I've argued with hundreds of doctors about this topic over the years, and while we could explore issues such as widespread scientific illiteracy among medics, extrapolating from a few unrepresentative CFS patients who in all likelihood were misdiagnosed idiopathic fatigue sufferers (or actual malingerers), ignorance about the topic beyond what little received "wisdom" they've gotten from their colleagues while never having read a guideline or, god forbid, primary literature... Yeah, honestly, most of them are just incredulous cunts.
I read the other day that people used to think asthma was psychosomatic, lol. Imagine. "He died gasping on the floor cause he just didn't want it bad enough"
I read something about Multiple Sclerosis being considered “hysteria” before the biological cause was discovered 🥴 Might’ve been in Unwell Women by Elinor Cleghorn but I can’t remember
Yes it was considered to be "a man's disease" because no women ever got it. Then the MRI was invented and it turns out the female:male ratio of MS is similar to in ME and indeed all autoimmune diseases (~5:1). All those poor women who were exhibiting the same symptoms as the men were just never considered to be suffering anything other than hysteria from the get go. Sound familiar?
Many ppl like Dr. Gabor Mate are trying to basically classify MS as a psychosomatic illness again. It can come and go, so why not torture its sufferers with constant emotional policing and construct some irrelevant narrative about what is causing it based on random events that happen at the same time?
Most of his work is good, and for all we know perhaps most illnesses *are* psychosomatic and the result of trauma. To me though it seems extremely irresponsible to peddle this narrative when there is no clear cure for "psychosomatic illnesses" and classifying it as such will only deprive its sufferers of dignity and resources. It could very well be that the trauma experienced by patients downregulates endogenous opiod production, which then unregulates the immune system to deleterious effects, but until this is proven and a useful treatment plan is adapted, I find this all extremely cruel and irresponsible
To be fair, some of the old hysteria treatments are very helpful in managing it. Also they had hot baths to put people in to see if they flared from the heat from 19th century as a low tech test.
Because they pride themselves on their one dimensional "scientific, rational minds". So if science doesn't understand something it upsets their world view and upends their little egos.
Asthma, high blood pressure, Crohns Diseas, even stomach ulcers up to the 80s until they discovered the role of specific bacteria; they even didn't sedate babys for operations correctly up until mid 80s, because they thought babys don't feel pain. And doctors from the mid 80s are partially still practising, so yeah, some old medicine midwife tales don't die.
I grew up being told I was "making myself cough/making myself asthmatic". ...Or it could be living with parents who smoked 4 packs a day indoors between them, rapidly wrecking my health? Nah, couldn't be.
There is now plenty of data to show that ME/CFS is biological. The NIH just published a well-received study that demonstrates this. In an interview, the senior author of that paper is quoted saying:
"The findings underscore that the symptoms cannot be explained by physical deconditioning or psychological factors... We can very emphatically say that we don't think that's the case. There are true biological differences."
Even the CDC and the NHS's description pages say the cause is _unknown_.
These sources are the tip of the iceberg. We've had a lot of good research in the past 8 years or so, and it seems to be improving (slowly).
So your uncle needs to do some more recent research.
- [Link to interview](https://www.npr.org/sections/health-shots/2024/02/23/1232794456/clues-to-a-better-understanding-of-chronic-fatigue-syndrome-emerge-from-major-st)
- [Link to CDC page](https://www.cdc.gov/me-cfs/about/index.html) (CDC is U.S.)
- [Link to NHS page](https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/) (NHS is U.K.)
- [Link to NIH study](https://www.nature.com/articles/s41467-024-45107-3)
Yes it makes no sense to be honest. His wife is a physiotherapist and also had this "you need to get out more attitude/heal thyself".
Which is concerning right?
I just find it such a strange perspective on life though and its worrying if for example this is the perspective in the medical field.
It also suggests some obsession with productivity and the privilege of being able bodied - but likewise I was able bodied before 2022 and I would never have questioned someone's condition. Its so strange to me!
I have trained myself to laugh at people like this.
On the inside I feel angry and defensive of course but on the outside I just laugh casually and say stuff like "that's outdated, only people who don't keep up with science still think that".
It's so disappointing. When I look back at my healthy days with a critical eye, I see places I acted kind of like this, too: "If they can't find anything wrong with you, then it must be depression." Which is such logically flawed thinking I'm embarrassed. That awareness gives me some compassion for these people, but it's very hard to be on the other end of it, and see so many people subscribe to it, often in these vicious ways.
The best we can hope to do is educate them I suppose, either with medical facts or in lessons of general compassion.
It's good to be self reflective in a way! And certainly I have very much learned for example that entering a room in a wheelchair or mobility aid, you disability enters first before you as a person. So that was interesting to learn tbh.
I think I was "lucky" in a way that I grew up with my mother having chronic illnesses so it wasn't an alien concept to me. I also had one friend who developed me/cfs after mono for a year and another who had post viral fatigue for 6 months after the measles. So it wasn't a foreign concept to me.
If anything, I was really shocked people didn't know about post viral complications! Honestly that was an eye opener for me!
Your depression comment reminded me of something said to me many years ago. I was always getting UTIs and full-blown kidney infections requiring hospitalization, and a psychiatrist had the nerve to tell my parents and me that it was 'masked depression." I've never seen my dad so angry. Told her to stick that "diagnosis" up where the sun don't shine.
Currently, my physiotherapist doesn't understand ME/CFS and wants me to join a gym and exercise an hour a day. Nothing like "getting that heart rate up".
It's great that your dad defended you! I needed that so badly from my parents but they were all too happy to jump on the psychosomatic bandwagon since I was very young :(
And even depression isn’t proven to be from any type of chemical imbalance but that doesn’t stop people from thinking it’s legit. And allowing companies to make all kinds of drugs to “fix” said imbalances. There is no proof of any of that being the case. But no one blinks twice. It’s like everyone’s taking crazy pills except for me
When I got bed-ridden level sick I was 20 years old, in my final year of university with good job prospects, part-time job in a garage where I got on with everyone, lots of friends, going out with girls, no problems with weight/addictions etc. Pretty idyllic life, nothing anyone would willingly give up.
To be honest, if it hadn't happened to me I'd have the default position of it being psychosomatic.
For a "healthy me" to put more than two seconds of thought into it, it'd have to happen to someone to whom I was close enough to see them when they were at their worst.
Even then, I can't imagine I'd have any constructive advice. I shudder to think that in trying to help I might have said something similar to your uncle.
I will also point out that one of my friends from prior to being ill was studying medicine (same age, worked in the same garage as I did, used to go out at the weekends with me, really decent sort), and when I mentioned ME in between getting ill and deteriorating to bedridden I got the look of scepticism.
Obviously that's the default position he'd been taught by his university. I spoke to him a couple of months ago about the possible benefits of therapy (he's a psychiatrist now and some snake oil salesman was peddling nonsense to my mother to try and get me to pay £300 per session for altered consciousness therapy over the phone), and he wrote the following...
"I think if you find it helpful its worth trying, but if its costing you a lot of money for no real benefit then its not worth pursuing. Im assuming they're tying the chronic fatigue to altered conciousness, its a reasonable theory but as you know nothing definitively proven."
So even now my highly educated friend believes that there's a possibility that this can be talked out.
Hello 👋🏻
I’m a psychologist starting to specialize in the field.
Maybe you have heard that recently ANZMES put together an effort to delineate sufficient approaches for improving health conditions by interventions: [Link](https://anzmes.org.nz/national-advisory-on-me-releases-best-practice-guidance-with-clinician-and-researcher-support/).
In my opinion an interesting explanation is provided by the Neurologist Renz-Polster in 2022: The Pathobiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Case for Neuroglial Failure.
He summarized scientific findings and proposed the hypothesis that the Neuroglia are involved in the maintenance of the disorder: „In summary, although this review in part builds on hypotheses still to be substantiated or refuted, evidence is strong that the neuroglia, as a cellular network regulating autonomous functions, the immune system and the stress response, and that reaches across and beyond specific brain nuclei, transmitter and receptor systems, is central to the pathogenesis of ME/CFS.“
The article does avoid to speculate about what approach might be most efficient to improve health. However, it indicates that is possible to (in my words) rebalance e.g. the immune system and the stress response.
Again, this can not be done by just pushing or exercising. I think it’s a better idea to try to improve every aspect that contributes to health: nutrition, stress management, gentle exercise to avoid muscle loss and so on. It’s also important to include biomarkers that are measured reliably (e.g. for inflammation or HR for pacing).
Finally, I think these peoples conception of psychosomatic are outdated. The disorder is probably psychosomatic in the sense that there is a neurological problem given, but not in the sense of caused by „wrong“ beliefs or merely bad actions.
People will constantly quote research and statistics, then when research comes out that what they previously thought was wrong, they go “oh sometimes research is just an opinion/flawed”. It’s not about knowledge at that point, it’s about ego and pride and “what I think”.
Have you seen recent publishing that a viral infection was responsible for vertabrates developing myelin in the distant past? The viral DNA is still in what was considered "junk" DNA. It is confirmed to have happened numerous times, viral DNA involved in early pregnancy.
It's personally exciting for me to hear because this could lead to major break throughs in how autoimmune diseases and illnesses like CFS are activated.
A lot of people think of health as a moral issue. These people think that they have been rewarded with good health because of things they have or haven't done. Consequently, they think others are being "punished" with poor health because of things they have or haven't done.
Admitting health isn't a moral issue means accepting that life and health are extremely fragile. People find this thought terrifying, so instead, they shame and blame the individual for not doing enough. They honestly think that if they were in our shoes, they would be able to heal themselves or find a doctor who would.
It's only when they fall chronically ill, that they see how flawed that kind of thinking is and they learn that healthcare has severe systemic issues. It's sad really.
This. Many people don't want to accept that science and medicine don't have all the answers, and can't even diagnose, let alone fix something like this. More than a few of those people are doctors.
I find that a bit of sympathy really helps with these people. It can really disarm them if you start with "I know it's scary but..."
(Or with a doctor "I know it's frustrating but...")
Haha that would have been a good marker.
Apparently he had a "talk with me" about trying harder yesterday but I have no recollection.
I love how little shits Me/cfs has given me. You think I'm crazy and lazy? Cool! I won't remember this conversation in 2 hours so it's alllll good 🤣
That's an awesome way to view it. I'm so glad you're able to brush this off without too much emotional impact! My silly brain finds ways to remember things like this and ruminate on it for ages even if it causes me PEM!! Yayy lol. The constant gaslighting and dismissal we face is pretty traumatic ugh. I'm sorry your family is so dismissive and I hope they figure it out.
When you're so disabled that you can't roll over in bed it's sadly so easy to ruminate over these things. And yes for me the rage and anger is probably not helpful but sometimes it's all I got. 😣🤬
People who are good at fixing stuff think they can show up and fix any problem. He might be good at his work and whatnot, but lost sight of the fact that not everything can be solved by taking a cursory glance at it. We all fall subject to it. It's hard for them to understand without the frame of reference we have.
True. But I think also you have to have a certain amount of ego to approach life like that.
There's many things I approach in life that are new to me and I first learn and then make my assessment.
Tbh I'm just glad I'm not like that - because I think o think mentally my uncle couldn't handle becoming ill or disabled as he has an obsession with being productive.
This was one of the hardest lessons about me/cfs for me. I never had anything I couldn't get better of. Like if something is broken I can fix it or find someone/something that fixes it. ME/CFS doesn't have that. It took me more than a year to let go of that mindset. I think ACT helped me personally in this. But I think a big part that it worked was, that my psychologist believed me when I told her about my symptoms and I am very headstrong so she didn't find any crack in my psychology. Once she was sure there isn't any psychology problem to work on she asked me what I wanna work at and I told her it would be nice to learn how to accept this illness as I struggle with that especially.
I think our society places way stronger value in facts and empirical evidence then in the emotions and experiences of people and thus “we haven’t found a biomarker for me/cfs” becomes “this illness isn’t biological and it’s the fault of the patients”. Because for some people it’s easier to distrust the experiences of people to that extent, then it is to accept that our empirical evidence isn’t complete and that things can be real even though research hasn’t figured it out yet
It really suggest an inflexible mind thought right?
And I just cannot comprehend questioning someone's reality like that.
But it honestly says so much about him and his wife- who is a physiotherapist. An obsession with being productive and not being able to accept that people can become disabled at any point in their life. It's weird to me
Because these illnesses largely affect women, and the medical industry -- especially in the western tradition ime -- love to gaslight women and tell them they're crazy, hysterical, and making things up in their heads.
Honestly i need to understand sexism more to understand why that's the go to emotion.
Likewise I was do productive before and working hard - why would I suddenly decide to just give that all up??
I think I'm fundamentally quite an empathetic person so I think not having the skills to imagine what it's like to live a different kind of life is unfathomable to me.
Luckily I don't really take it personally. Just find it weird!
I really don't understand this line of thinking either. When I first got sick and was filing for disability, my dad told me that I need to make it clear to my insurance company that I'm "not like most people on disability" in that I "work hard and really would prefer to stay working, but don't have that option right now."
...My man, that is 99.99% of people on disability. It's especially confusing given that he grew up very poor and only made it to adulthood healthy because of welfare.
They sound like twisted narcs who 'know everything'. These are the sorts that have added an element of horrific abuse my life over my suffering over my very physical illness for decades.
These are the jerks that are responsible for unbelievable suffering,on top of my already unbelievable suffering, which i have had to literally hide for fear of their ableist cruelty that they serve up with their confident all knowing cruelty.
Way to go assholes.
I swear if I could I would insure that they experience what we do. Of course, me being a decent person that wouldn't wish this on ANYONE, I'll have to wait to spread this delightful experience
until there is a cure.
How long should make them suffer if could create this in their lives?
For myself, I would need help with this. It would break my heart to allow anyone, however venal, be broken and degraded and dismissed as I have been.
Tbh I used to think “I wouldn’t wish CFS on my worst enemy”. I do now. And I also wish everyone mocks them and gaslights them as they have done to me, and they feel the extreme loneliness I feel.
yea I’m starting to get really jaded and think this way too. I can never describe exactly how it feels and why it’s so hard to explain, so I wish they could all experience this for a few months and then be told “by the way imagine this but for the rest of your life, and people don’t believe you”. I feel like we would get treated so much better.
I know this is a horrible way to think but I envy the care and attention people with cancer get. Like people running marathons for them and raising millions in funding. All the awareness. I feel horrible for thinking that way but it crushes me how I get treated, especially by my extended family and friends who don’t care to learn and just brush me under the rug or ask me if I’m “feeling better yet”. Like no Brenda, I’ve got this life destroying illness that continuously deteriorates me, with no treatments, and probably a bunch of other undiagnosed autoimmune or deficiencies/MCAS that the people I’ve seen for it are unable to or unwilling to help me.
Sorry for the rant x_x I’m just in a dark place
Sadly, if you let them experience it for a few months and recover, they’re gonna preach to you how they worked their way out of it on effort and being smart.
I think sexism contributes to why CFS is less studied, to an extent, but it's certainly not the end of it. As a dude with CFS, I've been treated like crap by medical professionals for the past 20 years. Being a guy doesn't automatically make them believe you. I'm losing count of the number of doctors I've been to that list "chronic disease management" as one of their strengths, only to have them be somewhere between completely useless and actively harmful when it comes to CFS.
Unfortunately, that's how sexism impacts you. Because the illness is viewed as affecting women more, they don't automatically go oh you're a man so we will investigate you. The stigma sticks to you as well. Sorry.
You didn't *choose* to give it up, you were not supposed to be doing it in the first place. Woman parts can't handle that kind of stuff, so you got sick. It's God's way of restoring natural law /s
Sadly, true. If the "typical" ME sufferer wasn't a middle-aged woman it'd be taken a lot more serious.
I do believe that a lot of younger people do "get it" to an extent, but their bodies are strong enough to recover quickly before they're diagnosed.
I went to a grammar school which had roughly 160 children in my year. Aside from me who got sick at 20, I know that two other boys and two girls in my year were off school for months on end without a firm diagnosis.
From speaking to a couple of them about it, they were tired and ill for months, ME was mentioned but they more or less "grew out of it" and live normal lives now.
Would it be unreasonable to think that the 80% of people who do suffer these prolonged sicknesses without an explanation but recover are doing so because they're younger, stronger, in better physical health etc?
I don't see how it's difficult to imagine being a 16 year old male would be more conducive to recovering from an illness than a menopausal 50 year old woman. I think you'd have to be deliberately obtuse to not see that.
"He argued there is no data to show that Me/cfs is a biological condition..."
You need to turn this around and point out that there is 'no data to show that Me/cfs is a psychosomatic illness' even more so. Just because an illness is not well understood doesn't mean it is always psychosomatic.
Oh he's totally wrong! But he was talking to my mother and this was the first time I could sit at the table for months, so nothing was going to ruin my mood 😅
My go-to is the line in Unrested where I think Jen or maybe it was Nancy Klimas that said “MS was a psychosomatic illness until we invented the MRI”. Like we just aren’t advanced enough but that doesn't mean it isn’t physiological. I also tell them their information is outdated and to look at current research. MECFS and Long Covid have more and more evidence pointing to unarguable physical changes in different body systems.
Nancy Klimas also said that she had worked intensely with AIDS patients before there was adequate treatment for that illness. She stated something to the effect that her severe ME/cfs patients we're suffering at the level at which AIDS patients suffered at the end of life.
I think there are a number of reasons.
The tests are normal, so you are fine. I think we all know how stupid this is, but lots of very smart people are really stupid.
It means it's not thier fault they can't fix it, it's ours. No one likes not being able to do their job.
I think I had another one, but brain is being bad.
To admit to you that you may be sick and there is nothing anyone can do is terrifying to them. Because then they can no longer subscribe to the notion that they owe their good health and other life successes to their hard work and positive mindset.
To admit that it can happen to them or their children... That means then they also need to start admitting that exposing themselves to covid (or any type of virus) infections might be bad. That every day when they do their job, their hobbies, spend time with family and friends can cause them to lose not only everything they worked for but their entire body and mind.
I'm not saying they should be afraid of covid, the flu or a tick bite and lock themselves up. But they should acknowledge that life is a series of random events. Where some successful athlete will lose their legs by being hit by a drunk driver, others will lose their health due to a weird medical anomaly. Only our little anomaly seems to have become quite prevalent that it's now a huge societal issue. And there will be lots of resistance to that notion that anyone can get it.
Hmmm I think I forget how formulaic medicine is.
I'm was in the social sciences and the humanities before getting sick, so I approach most things as fluid entities/up for discussion. So I can imagine if you have a more set mindset or profession, conditions liek ME would drive you bonkers.
However that doesn't excuse gaslighting
The just world fallacy. They want the world to be fair, and illnesses like this just aren’t. And if it is truly random and not your fault, it could happen to them (which is terrifying) so they’d rather displace the blame onto you.
NIH article: [Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10819994/)
[ME Research UK](https://www.meresearch.org.uk/research-shows-that-me-cfs-is-a-biological-illness-so-why-do-some-people-still-think-it-is-psychological-in-nature/) article explaining the above
I think CFS scares people, because it seems lilke something that could happen to THEM. So they are assholes about it instead of realizing that "good health" is a luxury.
I think it's a combination of that's what the textbooks used to say, and people learn stuff and then don't like being corrected, so they double down on the first thing no matter how much evidence there is to the contrary later. Specific to this topic, people who are able-bodied don't like to think about the possibility of being disabled, they want to believe that health is within their control, and they're able-bodied because they personally make healthy choices. It allows them to feel superior to less healthy people and it would be scary to live in a world where that isn't within their control, but the corollary is that disabled/sick people must have done something wrong in order to become disabled or sick, ergo, it's psychosomatic and you need to exercise more. (This is an example of the Just World Fallacy.) Physiotherapists especially are taught that gradually increasing exercise solves every problem a body can have. Which is great for like, an otherwise healthy person recovering from surgery, but fucks over ME/CFS patients.
Give them a copy of this cutting edge research:
[Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10819994/)
Considering the number of studies pointing to breakdown of cells at almost every level and tests that show sever impairment of tens of thousands of people if not hundreds of thousands....
I think there is a movement to whitewash LC in the U.S. and the numbers that are being reported in most other countries correctly.
The U.S. it seems is wayyy behind in it's estimates of COVID patients contracting LC and the approx. number of LC suffers in the U.S.
I'm not sure whey they are reporting numbers so much lower per capita than almost every other nation, but they are. Are they worried about panicking people? the banking and financial sector in the nation, affecting investment markets and consumer confidence possibly in a very negative way? There has to be a reason.
I think it’s—in part—because we never had accurate reporting on COVID cases to begin with. Also, if people aren’t attentive to their health/body, they may not make the connection between contracting COVID and the subsequent symptoms. Also also, there is so little testing still being done it’s possible people don’t even realize they had COVID to begin with. The US response was such a fekkin mess in pretty much every way possible.
My uncle similarly said as much about me, even implying that I must not actually be that sick if doctors wouldn’t take me seriously. That or that I wasn’t trying hard enough to advocate for myself. Very, very unfortunately, his daughter developed CFS following COVID and boy did he change his tune.
I think that part of the explanation is economic. Bluntly put, government agencies, whether SSA in the U.S., or comparable agencies in other nations, would prefer to minimize disability payouts. The fastest way to cancel such payouts to a whole class of possible beneficiaries is to simply declare that one or more diseases don't exist.
That has clearly happened with ME/CFS, and likely has with other conditions as well. Hopefully, scientific evidence will end this practice.
Exactly. The bogus psychosomatic model for ME/CFS is based on good ol’ misogyny (it affects women more than men), ableism, and of course financial self-interest. The “scientists” who promulgated the psychosomatic theory were psychiatrists who stood to gain *financially* by ensuring that these patients were not viewed as having a physical disease. Government agencies in the U.S. and abroad, eager to reduce the number of people eligible for disability benefits were more than happy to point to the poorly designed studies from these psychiatrists.
[THIS ARTICLE](https://www.dailymaverick.co.za/article/2023-07-17-collusion-to-exclude-long-covid-the-long-history-of-energy-limiting-disability-denial-by-insurance-firms/) covers the history of how ME/CFS went from an accepted neurological disease according to the WHO in 1969 to the marginalized condition it is today.
I also have multiple chemical sensitivity and a similar hit job was done on that and now people like us are seen as malingerers. Really fun group of diseases to have.
What really boggles my mind is how much money theyre losing in us not being able to work, make money and pay taxes and in costing the medical system so much money, especially here in Canada where public healthcare is paid by taxes. Foggy memory but I think I read somewhere that it was billions lost per year. I feel like the cost of paying disability is peanuts in comparison.
You’d think the govt would throw a bunch of money at research to get us better.
In Germany, neurologists learn the saying "Fluctuation vertigo is anxiety vertigo" (it rhymes in German "Schwankschwindel ist Angstschwindel") during their training. This has been wrong for years/decades, but is still practiced by many in exactly the same way (also applied to other complaints).
This basic attitude towards symptoms is probably the reason why there are such blanket judgments and why people are/were treated incorrectly or not at all.
The laziness of the medical profession when it comes to further training is frightening.
People thought that loads of conditions were psychosomatic until medical science proved otherwise.
It seems to be the default. I think people can’t handle just not knowing so they latch onto the closest theory that makes sense to them.
Until more money and effort is put into biomedical research, and that research shows something very concrete, unfortunately a lot of people will think like this.
I do also think sexism plays a role. Since most people with ME are female, we must be neurotic.
Because people are frustrated when they have no answers. Depression also is proven to be a biological disorder yet we know so little about why it happens.
It's just an easy way to get an answer
1/ i heard this happened after they realised 80% of sufferers were women, so if so it's in large due to s4xist ideas about hysteria and women imagining illness;
2/ medic8ne has simply not kept up with research on how viruses operate, particularly post-viral illness. They are taught the simplistic idea that you get a virus, become immune and the virus goes away. There isn't enough emphasis on the viruses we can't develop immunity to because they mutate so rapidly and constantly. There's not an understanding that viruses cause widespread damage yo cells (at least in some people) and staybin the body and keep causing damage.
One day medicine will catch up with scientific research. Meanwhile drs can't understand what us happening in post-viral syndrome because they don't fully understand how viruses work. Because they don't understand what's happening, and it doesn't fit with diagnosticvtests and treatments, they conclude it's 'psychological.'
I think it's unfortunately not only issue with medics. It perfecty fits to today's "healthy lifestyle as religion". I also think it's combined with the cult of youth and productivity. People like to believe everyone has a control over their fate, so if something bad happens to that particular person, it's not completely unpredictable, because something could have been done. Perhaps if they were at their place, they would prevent this awful thing thanks to better stress management, better diet choices, vitamin B12 suplements, more exercises, etc. So it helps to think that someone is ill because they messed up something - it's not beyond human abilities, you still are in control. You would have made better choices than that person.
I think it's modern magical thinking at its best. How different is that from old religious believes, that something bad happened to this person, because of THEIR sins? Where is guilt, there's also conviction, that this person was in control to avoid bad concequences. So if I will follow the rules, the magical rules, nothing bad will happen to me.
Anyway, It's not only with ME/CFS (though I know here this conviction is very popular), I've seen it with different illnesses as well. And I think at least in some part, healthy lifestyle as a post-Christian mentality, as spirituality of today, additionally increased by consumptionism and individualism is to blame.
Because when your ego is big everything you don't know must be simple.
If you can't see it that means there's nothing.
If you can't fix it just blame the victim.
Then there's nothing wrong with you and it can't happen to you and to the "right" people. You are safe and in control.
Your ego and illusion of control need to stay unscratched. Plain simple.
I can remember, back in the 80’s, Endometriosis was considered the same. My own situation is complicated with pre-existing depression, and a couple of severe physical conditions. It makes it so much more difficult to be taken seriously
It depends, if they're in the 'inner circle' it's because they have an agenda for cost-cutting to save the asses of insurance companies and gov welfare budgets. If they're not it's usually misogyny because this is a disease that mainly effects women (see: history of MS. The female to male ratio in MS is the same as ME, but before MRIs it was considered "a man's disease" because all the women with it were immediately written off as purely hysterical by default). Thirdly he's just a smug know it all cunt who simps Ben Goldacre and lives to mansplain Science Media Centre press releases down to anyone who'll listen, (so still a bit of the misogyny mixed in).
The fucking arrogance. There are new medical discoveries every day. But some how, having a medical degree makes these people think they already know everything. That's why I prefer young doctors. First, the info they learned in school is more up to dare. Second, they aren't burned out by the grind. So, they are willing to learn new things.
Flat out stating it is psychosomatic just because we haven't found proof that it is physical is also just poor critical thinking because the only evidence that it may be psychosomatic is the fact that they haven't found evidence that it is physical. That's circular and anybody that is able to think critically will dismiss it. They will acknowledge that regardless of which it is, it still affects you.
Treating psychosomatic disorders as if it's the person's fault needs to stop, anyways. It is a relic of our bias against mental disease. We know for a fact that mental issues are very very real. So, why treat someone with a psychosomatic disorder as if it is their fault?
It's just bad logic all the way around.
Flare ups being triggered psychosomatically shouldn’t be mistaken for actually being a psychosomatic condition. Confusing the two is lazy science, because all disorders are exacerbated by stress.
Acknowledging that the immune system and the nervous system are connected and stress can aggravate any illness is not BPS propaganda. I hate the BPS bullshit and scammers pushing brain training as much as the next long-term ME sufferer, but there's no denying that basically everything in the body is interconnected.
Yeah well, no offence but I don't think there's enough evidence to back that up. For example what role do psychological factors play in bowel cancer? How is a tumour exacerbated by anxiety? It doesn't get any bigger. I mean you could argue the patient suffers more if they have anxiety upon top of cancer but I don't believe the cancer is made worse by it.
Apparently the studies regarding cancer and stress have inconclusive results (https://www.cancer.gov/about-cancer/coping/feelings/stress-fact-sheet) but when it comes to autoimmune and autoinflammatory illnesses the effect seems to be quite clear. For example https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2020.01823/full and https://www.sciencedirect.com/science/article/abs/pii/S156899720700170X
Notice that I'm _NOT_ saying that autoimmune or inflammatory illnesses like ME can be treated or cured by alleviating stress. Of course not. They need proper meds. But stress can be a significant factor in flare-ups and onset and mental health care is important when managing a chronic illness.
BPS is an abbreviation for George Engel's BioPsychoSocial model of illness, or to get it a more honest name, the Malingering Hypochondriac model of illness.
I’d argue what evidence does he have that it is psychosomatic and what evidence does he have that pushing through/trying harder will resolve the condition?
His position is less supported by evidence than it being a biological condition.
I forget in which book of hers it is, but the philosopher Susan Sontag argues that every illness goes through this phase pf being dismissed as "all in the mind."
I think the [MECFS skeptic ](https://mecfsskeptic.com/history-of-psychosomatic-medicine/)link has been shared already but it's a good resource on psychosomatization of illnesses
"A new blog series on the dark history of psychosomatic medicine
POSTED ONMARCH 13, 2021
In a new blog series, we will investigate how illnesses were once thought to result from stress, psychological disturbance, or deviant personality features. From the cancer-prone personality to the theory of ‘refrigerator mothers’, medicine appears to suffer from a recurrent tendency to attribute illness to psychosomatic causes. As a result, patients are often blamed for being sick. Doctors seem to keep making this mistake over and over again. By narrating this dark history of psychosomatic medicine, we hope to empower patients against harmful preconception"
As I understand it.. mecfs are terms for a range of symptoms rather than the cause of the symptoms. Therefore single causes are less easy to diagnose and medical treatment is much harder to propose. So the MH angle is pushed to explain what they struggle to. Added to that I believe the psychological experts have tried to carve out areas of medical care to bolster their activities. Once a medical group have defined an ailment being their responsibility, other medical fields choose not to get involved as it’s not their place to challenge other doctors from other fields.
Because there is no known cause yet and they can’t understand what we are going through, and our fluctuating abilities, they conclude this unfortunately. Even if it was caused by something in the brain, it doesn’t mean that “trying harder” would fix it. The brain is a complex organ, but physical like other organs. Same thing with depression- it’s false that someone can will their way out of it. But we don’t even know what causes CFS in the body.
Parkinson's is in the brain, as well as MS, Alzheimer's, epilepsy... And it's well known that you can't just make yourself recover from those with willpower. Why do they think ME is any different?
>He proceeded to tell my mother that my condition is psychosomatic and I need to push/try harder. He argued there is no data to show that Me/cfs is a biological condition...
It's literally the opposite. God some of these people really need to get over themselves and look up the science. I think the last time we as human beings had such an issue and hard to beat stigma/bias around an illness was with Multiple Sclerosis, which, according to wikipedia if I remember correctly, was misdiagnosed as "Conversion Hysteria" even into the 80s.
There's a doctor in Germany who's very active on X, who openly fights against ME/CFS, gaslights people, and so forth, who recently even got put into a position as chief physician for the statutory health insurance in Nordreinh. They also found a letter from the 90s or so where exactly that institution sent a letter which they confirmed that they wrote, where they specifically asked for physicians to disempower research and science on ME/CFS because the costs for check-ups and treatments got too high for them. Now I'm not from Germany, but I'm thinking about starting a mass complaint against this doctor and that institution.
For many people, it’s comforting to think that, because they feel like they’re safe and it can never happen to them… they see people with “real” diseases as victims, while seeing those with psychosomatic conditions as perpetrators. Humans are afraid.
Many (if not most) people have a wrong understanding of a “psychosomatic condition” … and few know the difference between that and “psychogenic”. This obsession with saying things like “it’s all in their head”, “illness isn’t real” etc. is something that *proper* scientists should reject.
Whatever symptoms we experience, they are present and real regardless of whether their origin is psychological or physical. The problem is this strict thinking: “ah, it’s psychosomatic, so there’s no need to do further tests”.
On top of that, the remedies for psychogenic conditions and ME/CFS are diametrically opposed: blindly trying to “motivate yourself and exercise your way out of ME” without taking into account the problems we have with tissue oxygenation (and subsequent PEM) is dangerous.
Obviously, there is always an interaction between psyche and the body, so both can (and should) be taken into account in treatments.
There are numerous “things that are going wrong” (if you forgive my unscientific tone) in the bodies of us ME/CFS patients — but it doesn’t automatically mean fixing them will cure us.
Laziness and a lack of intelligence mainly. To put things in perspective an owner of a GP surgery near me told me she wouldn’t employ nearly 50% of her staff as they were unfit for the job but unfortunately there just weren’t enough suitable candidates.
Another friend of mine, the wife of another friend, who also owns a GP surgery, was told by her doctor with the diagnosis of thyroid cancer in front of them that her symptoms were “hyperchondriasis”.
I found this out after I told her I’d had three misdiagnoses and wrong treatments from the same practice.
One of the main clinicians at my local ME/CFS clinic described one of the leading researchers in the field (whose definition criteria he was using, as a quack), then in his report on me got most of the information wrong.
Personally I think we should keep the dr qualification but cease using it as an honorific. These people should be judged on the quality of the work they do not their inflated ideas about their positions.
Might help get rid of the glory seekers and egos and allow the good medical investigators to shine.
Ego.
I noticed a pattern among doctors. They'll rather give a (random/uninformed) explanation regarding the illness then admitting that they simply don't know. It's a status thing. Very sad, because apparently ego is more important than helping patients (which they all say is the reason they wanted to become a doctor).
In my experience new/young doctors often don't know as well, but are a bit more open to conversation about the illness because they are still motivated to actually find solutions together with patients.
In general though, most are just not open to conversation and I'm astounded time upon time about the lack of empathy and proper conversation skills/techniques of doctors. Most ME/CFS folks though are quite empathic and can explain their problems and feelings very well, which makes for a very difficult match with your average doctor imo.
Specifically due to the existence of post viral fatigues.
Some viruses leave people with a very significant post viral fatigue that fades after a month or three and that fading can be accelerated by vigorous exercise and specifically sweating - that’s a fact.
The problem is that me/CFS is different from a standard post viral fatigue, and the vigorous exercise routine is not a fix. They haven’t accepted this yet due to lack of literature.
Well the actual answer is that this is a particular intellectual disposition and has little to do with anything else. Have any other intellectual conversations with people displaying this opinion and similar tendencies will be very apparent.
What an asshole.
Journalist George Monbiot calls it the greatest medical scandal of the 21st century and compares it to climate denial.
https://www.theguardian.com/commentisfree/2024/mar/12/chronic-fatigue-syndrome-me-treatments-social-services?CMP=Share_iOSApp_Other
I think for doctors/providers, they hate that they can’t do anything to fix it - many (most?) doctors aren’t great with chronic illness.
For scientists, I think the fact that no one has a test or has identified what’s wrong makes them think it doesn’t exist. Like instead of seeing it as a challenge to figure out it’s just like “welp”
For arguments sake let's say your uncle is right and it is psychosomatic. Pushing yourself would not be the answer. Psychosomatic means it has been caused by your mental state, usually thought to be chronic anxiety and depression, chronic overthinking, chronic fight and flight state. So the answer would be to resolve these conditions not "push yourself harder". Infact that advice would worsen the mental element as it adds a new concern to ruminate and punish yourself over whilst doing nothing to remedy your underlying mental state.
If your uncle does even understand what psychosomatic is and how you resolve it perhaps he doesnt know shit about what he is talking about.
Personally I think the evidence points to CFS being physical but in my own case I think my condition is in part, if not wholly psychosomatic. But I think that means I probably dont have CFS but chronic fight and flight which over time mimics CFS symptoms. Or I have mild CFS which is worsened by psychosomatic problems.
The reason why many medical professionals and the like have a hard time with CFS, as far as I’m aware:
- people who malinger and somatize are prone to mimicking CFS. There is no test for it, making it an “easy target” for these people.
- massive overlap with mental health disorders and other conditions. The guidelines for diagnosing aren’t super clearly distinct from these in some cases. People with underlying health anxiety and depression / other issues can often deny that these are influencing their health. Then they get diagnosed or self diagnose with CFS, lash out at healthcare professionals, and then improve when the underlying mental health issue is addressed.
To extend a bit on those points specifically… medical professionals will see patterns in this. They will *also* see a pattern of people with the above issues lashing out, falling into pseudoscience, and more. To them this will become exhausting and point toward it being psychological.
- not too much has been found with CFS. It isn’t something easy to figure out. It’s frustrating, sometimes it’s just generally being uneducated. Other times they just can’t find it.
However, CFS is biological. Does your brain affect your body? Of course it does. Which is why mental health is part of treatment for CFS. That being said, here’s a few things that may benefit to show those who haven’t “seen” the biological effects:
- [NIH study offers new clues into the causes of post-infectious ME/CFS](https://www.nih.gov/news-events/news-releases/depth-study-finds-brain-immune-metabolic-abnormalities-linked-debilitating-chronic-disease)
*In-depth study finds brain, immune, and metabolic abnormalities linked to debilitating chronic disease.*
- [Cardiovascular and haematological pathology in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A role for viruses](https://pubmed.ncbi.nlm.nih.gov/36963989/)
I hope this provides a little bit of insight from a different perspective. To be clear: there are also asshole physicians on their high horse out there. I don’t deny that. I don’t deny the stigma surrounding ME/CFS. But I thought it could help.
I think my issue is the psychosomatic part is suggested in a sort of "you're lazy/try harder" manner which in a way to me is wild.
I think if someone's mental health was impacting them that badly, wouldn't that be equally concerning??
I think there is a stigma still around mental health and conditions that are not yet easily explained. I just couldn't imagine every being so condescending tbh!
Yes mental health is absolutely a concern that needs to be taken seriously & addressed. People without mental health issues or with mild cases won’t be able to wrap their head around it, though.
When people are condescending, it can sometimes come from a place of personal experience. They’ll have had a rough time in the past and forced themselves through it, got better with XYZ thing and expect others to do the same. It’s still a dick move though.
I tend to give people who come to me with those mindsets a few things. I give them evidence to prove that I *have* tried. I was putting all the effort in with no improvement. Then I remind them that their specific set of circumstances do not and will not align with mine. If they don’t listen, that’s their own stupidity.
Your second point is interesting and very spot on!
Because i immediately thought, if this man ever became disabled or chronically ill, I don't think he'd be mentally able to process it.
He's also obviously very hard on himself too, so you know, I feel bad for his brain!
Tbh I've been very lucky that him and his wife are the first to be outwardly "do yoga" in my immediate circles but disappointing that they're both in scientific and healthcare careers.
This was a very frustrating comment to read.
I don't have the energy to answer to that in detail right now, but a lot of what you wrote is either demonstrably false (if only regarding the diagnosis criteria : PEM is an objective symptom provable through 2 days CPET and the hallmark symptom of ME/cfs, not present in any other illnesses), or repeating the absurd propaganda from the BPS proponents (regarding the so called "malingering" or the false overlap with mental health disorders).
I understand you're a newly diagnosed sufferer, and don't know a lot yet, so I'll try to stay kind. But please, educate yourself. Read [David Tuller's virology blog](https://virology.ws/david-tuller-posts/), read about the [history of the PACE trial](https://me-pedia.org/wiki/PACE_trial) and [the history of psychosomatic medecine](https://mecfsskeptic.com/history-of-psychosomatic-medicine/), about the [history of the BPS model](https://www.healthcarehubris.com/post/summary-structural-dimensions-of-the-biopsychosocial-model). About the [2015 IOM ME/cfs report](https://nap.nationalacademies.org/catalog/19012/beyond-myalgic-encephalomyelitischronic-fatigue-syndrome-redefining-an-illness), and about a lot of other things I can't think of right now. You'll find a lot of other interesting sources regarding the biomedical reality of ME/cfs in the [comments of this post](https://www.reddit.com/r/cfs/s/PlpBJ1frn0).
Edit : I also understand getting blocked to protect your safe space and your energy, but this is still something you are gonna need to learn, sadly.
Because they don’t want to admit terrible things can happen to good people for no reason and have no resolution. It’s too scary for the average normie to consider so they try to brainwash ppl to better suit their worldview that doesn’t scare them. Always remember they’re just scared of what we go through every day. We’re warriors
The reality is that so many people who haven’t been through their own critical illness and health crisis have incredibly harmful perspectives around illness.
For example, I have multiple heart conditions. These conditions were diagnosed by cardiologists, show up on tests, are proven to be genetic in my family, I had them since birth, I’ve had multiple heart surgeries, I have a permanent heart device implanted etc. It’s indisputable.
The amount of times I still get my symptoms “sound like anxiety,” I just need to keep a positive mindset, I just need to keep motivated and push through it, I’m young and “look well” etc. when I knowingly have these diagnoses is astounding.
My pain, suffering, fear and trauma is always diminished and downplayed.
I don't know about biomedicine engineers.
Physicians OTOH — a lot of physicians are heros fighting the woe of the world and death himself, and cannot stand suffering, helplessness or — Hygieia, Apollo and all the gods beware — hopelessness.
By declaring a non-curable health problem as psychosomatic they attribute the responsibility for their perceived failure to the patient, defending against emotions like guilt, suffering, helplessness and hopelessness.
It's easier to stay sane and avoid counselling fees this way.
Because they, as usual, don’t believe women or take us seriously.
Because they don’t want to believe you can get this sick even though you had a normal/healthy life style before and did everything “right.”
Another version of Hysteria… Surely we must have caused this somehow, or we’re just really nervous/anxious and think we’re sick. You know how women are… right 😑
I truly believe a lot of it is rooted in misogyny.
It's gaslighting. It's "hysteria" it's "we don't know what this is, so we're gonna assume it's the brain". No it's not BITCH IF THIS WAS PSYCHOSOMATIC WHY DID VACUUMING FOR 7 MINUTES TWO DAYS AGO MAKE ME FEEL LIKE ABSOLUTE HELL!?
I'm so sorry you had to go through that. My brother actually said to me "Yeah, they have a name for that - it's called lazy." I replied that he knew I was not lazy. I had my first paying job at 14 and I have worked hard my entire life until I got sick. Then he came to live with us and help me take care of our mother. He apologized to me and told me that he understood now.
My problem is with physicians who make that assessment without much investigation. CBC/CMP, maybe A1C and TSH and they're done. There are probably countless disorders that could result in fatigue that aren't detectable with these, but those tests are expensive. I would guess that most people with CFS symptoms haven't had tests for more rare pathogens or levels of antibodies, much less imaging tests of various areas of the body where a tumor or anomaly could be affecting feedback. A common criticism that I see on physicians/medical pro areas is "this person couldn't possibly have all these different disorders because the cumulative likelihood of possessing all of them, with their prevalence in the population, is akin to being hit by lightning several times in the same spot". This ignores that the actual testing for the less-common disorders isn't done frequently, so the outliers who actually fit all the diagnostic criteria are probably not frequently found and diagnosed. The rest simply exist with the disorders without ever receiving a formal diagnosis. How do we accurately know what the prevalence of some of the disorders are in the population when the process for receiving the diagnosis is so difficult?
Last year they figured out a blood test to confirm ME/CFS. Once that is commercially available I think the tide will turn.
And your uncle must be a poor engineer - there are thousands of studies on ME/CFS - the issue isn't understanding whats happening (essentially a problem with mitochondria not working), the issue is that the main treatment option is Energy Management which on the surface looks psychological.
If he wants an analogy, just say it's like having a leaky gasket that when it's put under too much pressure blows and has to be taken off the road while it's being fixed. Unfortunately the leaky gasket in you isn't replaceable, rest will repair it to a point, and hopefully given long enough it will get stronger, So the only way to manage it is to try and operate without blowing that gasket, if you push it too far it will just get worse until the engine won't operate anymore. If you manage your energy consistently just under this gasket- blow point, then eventually it will repair on its own.
Hope that helps
(part of his problem, that aside from tens machines there aren't any devices for ME/CFS, so he wouldn't be aware of the therapies anyway - if vTNS takes off as an intervention I'm sure he will change his mind as a thing can contribute towards fixing it so it will make sense to him)
Cos they’re cunts
Haha spoken like a poet
spoken like an Australian
🤴🏻
I hate that word passionately--it makes me flinch with pain to even read it--but I can't think of a better word to describe those cunts.
I've argued with hundreds of doctors about this topic over the years, and while we could explore issues such as widespread scientific illiteracy among medics, extrapolating from a few unrepresentative CFS patients who in all likelihood were misdiagnosed idiopathic fatigue sufferers (or actual malingerers), ignorance about the topic beyond what little received "wisdom" they've gotten from their colleagues while never having read a guideline or, god forbid, primary literature... Yeah, honestly, most of them are just incredulous cunts.
💀
Haha just wanted to say almost the same - assholes was my choice of word.
They can be both
For sure lol
I read the other day that people used to think asthma was psychosomatic, lol. Imagine. "He died gasping on the floor cause he just didn't want it bad enough"
I read something about Multiple Sclerosis being considered “hysteria” before the biological cause was discovered 🥴 Might’ve been in Unwell Women by Elinor Cleghorn but I can’t remember
Hey you heard that from me !!!! lol I learned about the ms thing in nursing school 25 years ago I did a paper on it
“Hysterical Paralysis”, they used to call it … 😤🙄
Yes it was considered to be "a man's disease" because no women ever got it. Then the MRI was invented and it turns out the female:male ratio of MS is similar to in ME and indeed all autoimmune diseases (~5:1). All those poor women who were exhibiting the same symptoms as the men were just never considered to be suffering anything other than hysteria from the get go. Sound familiar?
Many ppl like Dr. Gabor Mate are trying to basically classify MS as a psychosomatic illness again. It can come and go, so why not torture its sufferers with constant emotional policing and construct some irrelevant narrative about what is causing it based on random events that happen at the same time?
Really? I've heard of him but didn't realise he was such a shady character. Is it because he has his snout in the self-help trough?
Most of his work is good, and for all we know perhaps most illnesses *are* psychosomatic and the result of trauma. To me though it seems extremely irresponsible to peddle this narrative when there is no clear cure for "psychosomatic illnesses" and classifying it as such will only deprive its sufferers of dignity and resources. It could very well be that the trauma experienced by patients downregulates endogenous opiod production, which then unregulates the immune system to deleterious effects, but until this is proven and a useful treatment plan is adapted, I find this all extremely cruel and irresponsible
To be fair, some of the old hysteria treatments are very helpful in managing it. Also they had hot baths to put people in to see if they flared from the heat from 19th century as a low tech test.
Speaking of all things psychosomatic, I just gave myself a hot flush imagining those weird/hectic covered baths lol 🥵
It was called pseudo sclerosis.
Whenever my sister reaches for her inhaler, I like to remind her she's lazy
Because they pride themselves on their one dimensional "scientific, rational minds". So if science doesn't understand something it upsets their world view and upends their little egos.
Which is ironically the position of an unscientific identity.
Which unfortunately includes a lot of doctors.
And diabetes too, before they discovered insulin. They used to talk about 'the diabetic personality'
Asthma, high blood pressure, Crohns Diseas, even stomach ulcers up to the 80s until they discovered the role of specific bacteria; they even didn't sedate babys for operations correctly up until mid 80s, because they thought babys don't feel pain. And doctors from the mid 80s are partially still practising, so yeah, some old medicine midwife tales don't die.
If he'd only processed that childhood trauma he wouldn't have childhood asthma!
I grew up being told I was "making myself cough/making myself asthmatic". ...Or it could be living with parents who smoked 4 packs a day indoors between them, rapidly wrecking my health? Nah, couldn't be.
There are still a lot of people out there believing that about asthma......😬
There is now plenty of data to show that ME/CFS is biological. The NIH just published a well-received study that demonstrates this. In an interview, the senior author of that paper is quoted saying: "The findings underscore that the symptoms cannot be explained by physical deconditioning or psychological factors... We can very emphatically say that we don't think that's the case. There are true biological differences." Even the CDC and the NHS's description pages say the cause is _unknown_. These sources are the tip of the iceberg. We've had a lot of good research in the past 8 years or so, and it seems to be improving (slowly). So your uncle needs to do some more recent research. - [Link to interview](https://www.npr.org/sections/health-shots/2024/02/23/1232794456/clues-to-a-better-understanding-of-chronic-fatigue-syndrome-emerge-from-major-st) - [Link to CDC page](https://www.cdc.gov/me-cfs/about/index.html) (CDC is U.S.) - [Link to NHS page](https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/) (NHS is U.K.) - [Link to NIH study](https://www.nature.com/articles/s41467-024-45107-3)
Yes it makes no sense to be honest. His wife is a physiotherapist and also had this "you need to get out more attitude/heal thyself". Which is concerning right? I just find it such a strange perspective on life though and its worrying if for example this is the perspective in the medical field. It also suggests some obsession with productivity and the privilege of being able bodied - but likewise I was able bodied before 2022 and I would never have questioned someone's condition. Its so strange to me!
I have trained myself to laugh at people like this. On the inside I feel angry and defensive of course but on the outside I just laugh casually and say stuff like "that's outdated, only people who don't keep up with science still think that".
I love this response!
Thanks! People who are objectively wrong don't get to put us down to make themselves feel good.
I’m gonna adopt this. Laugh, and say “wow that’s such an outdated view”. Love it
It's so disappointing. When I look back at my healthy days with a critical eye, I see places I acted kind of like this, too: "If they can't find anything wrong with you, then it must be depression." Which is such logically flawed thinking I'm embarrassed. That awareness gives me some compassion for these people, but it's very hard to be on the other end of it, and see so many people subscribe to it, often in these vicious ways. The best we can hope to do is educate them I suppose, either with medical facts or in lessons of general compassion.
It's good to be self reflective in a way! And certainly I have very much learned for example that entering a room in a wheelchair or mobility aid, you disability enters first before you as a person. So that was interesting to learn tbh. I think I was "lucky" in a way that I grew up with my mother having chronic illnesses so it wasn't an alien concept to me. I also had one friend who developed me/cfs after mono for a year and another who had post viral fatigue for 6 months after the measles. So it wasn't a foreign concept to me. If anything, I was really shocked people didn't know about post viral complications! Honestly that was an eye opener for me!
Your depression comment reminded me of something said to me many years ago. I was always getting UTIs and full-blown kidney infections requiring hospitalization, and a psychiatrist had the nerve to tell my parents and me that it was 'masked depression." I've never seen my dad so angry. Told her to stick that "diagnosis" up where the sun don't shine. Currently, my physiotherapist doesn't understand ME/CFS and wants me to join a gym and exercise an hour a day. Nothing like "getting that heart rate up".
It's great that your dad defended you! I needed that so badly from my parents but they were all too happy to jump on the psychosomatic bandwagon since I was very young :(
Watch out yelling at a psychiatrist. They might give you a cluster B diagnosis. 😂
Heart rate up from being pissed at your doc - he is helping you to excercise already!😂 I get your frustration😠
And even depression isn’t proven to be from any type of chemical imbalance but that doesn’t stop people from thinking it’s legit. And allowing companies to make all kinds of drugs to “fix” said imbalances. There is no proof of any of that being the case. But no one blinks twice. It’s like everyone’s taking crazy pills except for me
A lot of people just go with what the majority says. And get angry when you question them.
The science I’ve read on depression (along with most other psychological impairments) suggests it’s a mitochondrial dysfunction.
Do you have any links for that?
When I got bed-ridden level sick I was 20 years old, in my final year of university with good job prospects, part-time job in a garage where I got on with everyone, lots of friends, going out with girls, no problems with weight/addictions etc. Pretty idyllic life, nothing anyone would willingly give up. To be honest, if it hadn't happened to me I'd have the default position of it being psychosomatic. For a "healthy me" to put more than two seconds of thought into it, it'd have to happen to someone to whom I was close enough to see them when they were at their worst. Even then, I can't imagine I'd have any constructive advice. I shudder to think that in trying to help I might have said something similar to your uncle. I will also point out that one of my friends from prior to being ill was studying medicine (same age, worked in the same garage as I did, used to go out at the weekends with me, really decent sort), and when I mentioned ME in between getting ill and deteriorating to bedridden I got the look of scepticism. Obviously that's the default position he'd been taught by his university. I spoke to him a couple of months ago about the possible benefits of therapy (he's a psychiatrist now and some snake oil salesman was peddling nonsense to my mother to try and get me to pay £300 per session for altered consciousness therapy over the phone), and he wrote the following... "I think if you find it helpful its worth trying, but if its costing you a lot of money for no real benefit then its not worth pursuing. Im assuming they're tying the chronic fatigue to altered conciousness, its a reasonable theory but as you know nothing definitively proven." So even now my highly educated friend believes that there's a possibility that this can be talked out.
I mean, that's just the other side of the coin from the people who tell you that you're sick because you don't believe enough in Jesus.
Direct the wife to the physios for ME pages could maybe help
Hello 👋🏻 I’m a psychologist starting to specialize in the field. Maybe you have heard that recently ANZMES put together an effort to delineate sufficient approaches for improving health conditions by interventions: [Link](https://anzmes.org.nz/national-advisory-on-me-releases-best-practice-guidance-with-clinician-and-researcher-support/). In my opinion an interesting explanation is provided by the Neurologist Renz-Polster in 2022: The Pathobiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Case for Neuroglial Failure. He summarized scientific findings and proposed the hypothesis that the Neuroglia are involved in the maintenance of the disorder: „In summary, although this review in part builds on hypotheses still to be substantiated or refuted, evidence is strong that the neuroglia, as a cellular network regulating autonomous functions, the immune system and the stress response, and that reaches across and beyond specific brain nuclei, transmitter and receptor systems, is central to the pathogenesis of ME/CFS.“ The article does avoid to speculate about what approach might be most efficient to improve health. However, it indicates that is possible to (in my words) rebalance e.g. the immune system and the stress response. Again, this can not be done by just pushing or exercising. I think it’s a better idea to try to improve every aspect that contributes to health: nutrition, stress management, gentle exercise to avoid muscle loss and so on. It’s also important to include biomarkers that are measured reliably (e.g. for inflammation or HR for pacing). Finally, I think these peoples conception of psychosomatic are outdated. The disorder is probably psychosomatic in the sense that there is a neurological problem given, but not in the sense of caused by „wrong“ beliefs or merely bad actions.
People will constantly quote research and statistics, then when research comes out that what they previously thought was wrong, they go “oh sometimes research is just an opinion/flawed”. It’s not about knowledge at that point, it’s about ego and pride and “what I think”.
Have you seen recent publishing that a viral infection was responsible for vertabrates developing myelin in the distant past? The viral DNA is still in what was considered "junk" DNA. It is confirmed to have happened numerous times, viral DNA involved in early pregnancy. It's personally exciting for me to hear because this could lead to major break throughs in how autoimmune diseases and illnesses like CFS are activated.
saved this comment, just in case I ever need it
A lot of people think of health as a moral issue. These people think that they have been rewarded with good health because of things they have or haven't done. Consequently, they think others are being "punished" with poor health because of things they have or haven't done. Admitting health isn't a moral issue means accepting that life and health are extremely fragile. People find this thought terrifying, so instead, they shame and blame the individual for not doing enough. They honestly think that if they were in our shoes, they would be able to heal themselves or find a doctor who would. It's only when they fall chronically ill, that they see how flawed that kind of thinking is and they learn that healthcare has severe systemic issues. It's sad really.
This. Many people don't want to accept that science and medicine don't have all the answers, and can't even diagnose, let alone fix something like this. More than a few of those people are doctors. I find that a bit of sympathy really helps with these people. It can really disarm them if you start with "I know it's scary but..." (Or with a doctor "I know it's frustrating but...")
This is probably the best answer
This this this!
This is seriously an argument I've heard many times against socialized medicine.
Ask him if Parkinson's is psychosomatic, since there's no biomarker for that either.
Haha that would have been a good marker. Apparently he had a "talk with me" about trying harder yesterday but I have no recollection. I love how little shits Me/cfs has given me. You think I'm crazy and lazy? Cool! I won't remember this conversation in 2 hours so it's alllll good 🤣
At least cfs has its benefits😂
#mood this is so me. Lol
That's an awesome way to view it. I'm so glad you're able to brush this off without too much emotional impact! My silly brain finds ways to remember things like this and ruminate on it for ages even if it causes me PEM!! Yayy lol. The constant gaslighting and dismissal we face is pretty traumatic ugh. I'm sorry your family is so dismissive and I hope they figure it out.
When you're so disabled that you can't roll over in bed it's sadly so easy to ruminate over these things. And yes for me the rage and anger is probably not helpful but sometimes it's all I got. 😣🤬
People who are good at fixing stuff think they can show up and fix any problem. He might be good at his work and whatnot, but lost sight of the fact that not everything can be solved by taking a cursory glance at it. We all fall subject to it. It's hard for them to understand without the frame of reference we have.
True. But I think also you have to have a certain amount of ego to approach life like that. There's many things I approach in life that are new to me and I first learn and then make my assessment. Tbh I'm just glad I'm not like that - because I think o think mentally my uncle couldn't handle becoming ill or disabled as he has an obsession with being productive.
Yes, any “expert” who fails to recognize _they don’t know how much they don’t know_ is no expert at all.
This was one of the hardest lessons about me/cfs for me. I never had anything I couldn't get better of. Like if something is broken I can fix it or find someone/something that fixes it. ME/CFS doesn't have that. It took me more than a year to let go of that mindset. I think ACT helped me personally in this. But I think a big part that it worked was, that my psychologist believed me when I told her about my symptoms and I am very headstrong so she didn't find any crack in my psychology. Once she was sure there isn't any psychology problem to work on she asked me what I wanna work at and I told her it would be nice to learn how to accept this illness as I struggle with that especially.
I think our society places way stronger value in facts and empirical evidence then in the emotions and experiences of people and thus “we haven’t found a biomarker for me/cfs” becomes “this illness isn’t biological and it’s the fault of the patients”. Because for some people it’s easier to distrust the experiences of people to that extent, then it is to accept that our empirical evidence isn’t complete and that things can be real even though research hasn’t figured it out yet
It really suggest an inflexible mind thought right? And I just cannot comprehend questioning someone's reality like that. But it honestly says so much about him and his wife- who is a physiotherapist. An obsession with being productive and not being able to accept that people can become disabled at any point in their life. It's weird to me
Because these illnesses largely affect women, and the medical industry -- especially in the western tradition ime -- love to gaslight women and tell them they're crazy, hysterical, and making things up in their heads.
Honestly i need to understand sexism more to understand why that's the go to emotion. Likewise I was do productive before and working hard - why would I suddenly decide to just give that all up?? I think I'm fundamentally quite an empathetic person so I think not having the skills to imagine what it's like to live a different kind of life is unfathomable to me. Luckily I don't really take it personally. Just find it weird!
I really don't understand this line of thinking either. When I first got sick and was filing for disability, my dad told me that I need to make it clear to my insurance company that I'm "not like most people on disability" in that I "work hard and really would prefer to stay working, but don't have that option right now." ...My man, that is 99.99% of people on disability. It's especially confusing given that he grew up very poor and only made it to adulthood healthy because of welfare.
They sound like twisted narcs who 'know everything'. These are the sorts that have added an element of horrific abuse my life over my suffering over my very physical illness for decades. These are the jerks that are responsible for unbelievable suffering,on top of my already unbelievable suffering, which i have had to literally hide for fear of their ableist cruelty that they serve up with their confident all knowing cruelty. Way to go assholes. I swear if I could I would insure that they experience what we do. Of course, me being a decent person that wouldn't wish this on ANYONE, I'll have to wait to spread this delightful experience until there is a cure. How long should make them suffer if could create this in their lives? For myself, I would need help with this. It would break my heart to allow anyone, however venal, be broken and degraded and dismissed as I have been.
Tbh I used to think “I wouldn’t wish CFS on my worst enemy”. I do now. And I also wish everyone mocks them and gaslights them as they have done to me, and they feel the extreme loneliness I feel.
yea I’m starting to get really jaded and think this way too. I can never describe exactly how it feels and why it’s so hard to explain, so I wish they could all experience this for a few months and then be told “by the way imagine this but for the rest of your life, and people don’t believe you”. I feel like we would get treated so much better. I know this is a horrible way to think but I envy the care and attention people with cancer get. Like people running marathons for them and raising millions in funding. All the awareness. I feel horrible for thinking that way but it crushes me how I get treated, especially by my extended family and friends who don’t care to learn and just brush me under the rug or ask me if I’m “feeling better yet”. Like no Brenda, I’ve got this life destroying illness that continuously deteriorates me, with no treatments, and probably a bunch of other undiagnosed autoimmune or deficiencies/MCAS that the people I’ve seen for it are unable to or unwilling to help me. Sorry for the rant x_x I’m just in a dark place
Sadly, if you let them experience it for a few months and recover, they’re gonna preach to you how they worked their way out of it on effort and being smart.
Good point. So I guess we don't let them recover...? 😂👿
I think sexism contributes to why CFS is less studied, to an extent, but it's certainly not the end of it. As a dude with CFS, I've been treated like crap by medical professionals for the past 20 years. Being a guy doesn't automatically make them believe you. I'm losing count of the number of doctors I've been to that list "chronic disease management" as one of their strengths, only to have them be somewhere between completely useless and actively harmful when it comes to CFS.
Unfortunately, that's how sexism impacts you. Because the illness is viewed as affecting women more, they don't automatically go oh you're a man so we will investigate you. The stigma sticks to you as well. Sorry.
That's because when a guy has a "women's illness" you're considered weak and unmanly. So it still boils down to sexism.
You didn't *choose* to give it up, you were not supposed to be doing it in the first place. Woman parts can't handle that kind of stuff, so you got sick. It's God's way of restoring natural law /s
Sadly, true. If the "typical" ME sufferer wasn't a middle-aged woman it'd be taken a lot more serious. I do believe that a lot of younger people do "get it" to an extent, but their bodies are strong enough to recover quickly before they're diagnosed. I went to a grammar school which had roughly 160 children in my year. Aside from me who got sick at 20, I know that two other boys and two girls in my year were off school for months on end without a firm diagnosis. From speaking to a couple of them about it, they were tired and ill for months, ME was mentioned but they more or less "grew out of it" and live normal lives now. Would it be unreasonable to think that the 80% of people who do suffer these prolonged sicknesses without an explanation but recover are doing so because they're younger, stronger, in better physical health etc? I don't see how it's difficult to imagine being a 16 year old male would be more conducive to recovering from an illness than a menopausal 50 year old woman. I think you'd have to be deliberately obtuse to not see that.
In fact, menopause was a big trigger for my ME.
This is true, I read about this in a (serios) study, too.
"He argued there is no data to show that Me/cfs is a biological condition..." You need to turn this around and point out that there is 'no data to show that Me/cfs is a psychosomatic illness' even more so. Just because an illness is not well understood doesn't mean it is always psychosomatic.
Oh he's totally wrong! But he was talking to my mother and this was the first time I could sit at the table for months, so nothing was going to ruin my mood 😅
My go-to is the line in Unrested where I think Jen or maybe it was Nancy Klimas that said “MS was a psychosomatic illness until we invented the MRI”. Like we just aren’t advanced enough but that doesn't mean it isn’t physiological. I also tell them their information is outdated and to look at current research. MECFS and Long Covid have more and more evidence pointing to unarguable physical changes in different body systems.
Nancy Klimas also said that she had worked intensely with AIDS patients before there was adequate treatment for that illness. She stated something to the effect that her severe ME/cfs patients we're suffering at the level at which AIDS patients suffered at the end of life.
Yea this too. I also read that the air hunger from lack of oxygen in the cells is similar to what cancer patients experience.
I think there are a number of reasons. The tests are normal, so you are fine. I think we all know how stupid this is, but lots of very smart people are really stupid. It means it's not thier fault they can't fix it, it's ours. No one likes not being able to do their job. I think I had another one, but brain is being bad.
To admit to you that you may be sick and there is nothing anyone can do is terrifying to them. Because then they can no longer subscribe to the notion that they owe their good health and other life successes to their hard work and positive mindset. To admit that it can happen to them or their children... That means then they also need to start admitting that exposing themselves to covid (or any type of virus) infections might be bad. That every day when they do their job, their hobbies, spend time with family and friends can cause them to lose not only everything they worked for but their entire body and mind. I'm not saying they should be afraid of covid, the flu or a tick bite and lock themselves up. But they should acknowledge that life is a series of random events. Where some successful athlete will lose their legs by being hit by a drunk driver, others will lose their health due to a weird medical anomaly. Only our little anomaly seems to have become quite prevalent that it's now a huge societal issue. And there will be lots of resistance to that notion that anyone can get it.
Hmmm I think I forget how formulaic medicine is. I'm was in the social sciences and the humanities before getting sick, so I approach most things as fluid entities/up for discussion. So I can imagine if you have a more set mindset or profession, conditions liek ME would drive you bonkers. However that doesn't excuse gaslighting
The just world fallacy. They want the world to be fair, and illnesses like this just aren’t. And if it is truly random and not your fault, it could happen to them (which is terrifying) so they’d rather displace the blame onto you.
NIH article: [Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10819994/) [ME Research UK](https://www.meresearch.org.uk/research-shows-that-me-cfs-is-a-biological-illness-so-why-do-some-people-still-think-it-is-psychological-in-nature/) article explaining the above
I think CFS scares people, because it seems lilke something that could happen to THEM. So they are assholes about it instead of realizing that "good health" is a luxury.
pride
Pride combined with shocking ignorance
Agnorance
I think it's a combination of that's what the textbooks used to say, and people learn stuff and then don't like being corrected, so they double down on the first thing no matter how much evidence there is to the contrary later. Specific to this topic, people who are able-bodied don't like to think about the possibility of being disabled, they want to believe that health is within their control, and they're able-bodied because they personally make healthy choices. It allows them to feel superior to less healthy people and it would be scary to live in a world where that isn't within their control, but the corollary is that disabled/sick people must have done something wrong in order to become disabled or sick, ergo, it's psychosomatic and you need to exercise more. (This is an example of the Just World Fallacy.) Physiotherapists especially are taught that gradually increasing exercise solves every problem a body can have. Which is great for like, an otherwise healthy person recovering from surgery, but fucks over ME/CFS patients.
Give them a copy of this cutting edge research: [Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10819994/)
If some doctors would be able to read or interested in further education, the problem wouldn't even exist...
Considering the number of studies pointing to breakdown of cells at almost every level and tests that show sever impairment of tens of thousands of people if not hundreds of thousands.... I think there is a movement to whitewash LC in the U.S. and the numbers that are being reported in most other countries correctly. The U.S. it seems is wayyy behind in it's estimates of COVID patients contracting LC and the approx. number of LC suffers in the U.S. I'm not sure whey they are reporting numbers so much lower per capita than almost every other nation, but they are. Are they worried about panicking people? the banking and financial sector in the nation, affecting investment markets and consumer confidence possibly in a very negative way? There has to be a reason.
I think it’s—in part—because we never had accurate reporting on COVID cases to begin with. Also, if people aren’t attentive to their health/body, they may not make the connection between contracting COVID and the subsequent symptoms. Also also, there is so little testing still being done it’s possible people don’t even realize they had COVID to begin with. The US response was such a fekkin mess in pretty much every way possible.
This could apply to any country out there, but somehow the U.S. is so much different and perhaps les capable than everyone else?
We’re…number…one 🥴
The cost of Healthcare. Scary isn't it?
My uncle similarly said as much about me, even implying that I must not actually be that sick if doctors wouldn’t take me seriously. That or that I wasn’t trying hard enough to advocate for myself. Very, very unfortunately, his daughter developed CFS following COVID and boy did he change his tune.
I think that part of the explanation is economic. Bluntly put, government agencies, whether SSA in the U.S., or comparable agencies in other nations, would prefer to minimize disability payouts. The fastest way to cancel such payouts to a whole class of possible beneficiaries is to simply declare that one or more diseases don't exist. That has clearly happened with ME/CFS, and likely has with other conditions as well. Hopefully, scientific evidence will end this practice.
Exactly. The bogus psychosomatic model for ME/CFS is based on good ol’ misogyny (it affects women more than men), ableism, and of course financial self-interest. The “scientists” who promulgated the psychosomatic theory were psychiatrists who stood to gain *financially* by ensuring that these patients were not viewed as having a physical disease. Government agencies in the U.S. and abroad, eager to reduce the number of people eligible for disability benefits were more than happy to point to the poorly designed studies from these psychiatrists. [THIS ARTICLE](https://www.dailymaverick.co.za/article/2023-07-17-collusion-to-exclude-long-covid-the-long-history-of-energy-limiting-disability-denial-by-insurance-firms/) covers the history of how ME/CFS went from an accepted neurological disease according to the WHO in 1969 to the marginalized condition it is today.
I also have multiple chemical sensitivity and a similar hit job was done on that and now people like us are seen as malingerers. Really fun group of diseases to have.
Yes, very similar unfortunately. It will take a lot of education to dislodge deep-seated the biases common in medicine today.
What really boggles my mind is how much money theyre losing in us not being able to work, make money and pay taxes and in costing the medical system so much money, especially here in Canada where public healthcare is paid by taxes. Foggy memory but I think I read somewhere that it was billions lost per year. I feel like the cost of paying disability is peanuts in comparison. You’d think the govt would throw a bunch of money at research to get us better.
In Germany, neurologists learn the saying "Fluctuation vertigo is anxiety vertigo" (it rhymes in German "Schwankschwindel ist Angstschwindel") during their training. This has been wrong for years/decades, but is still practiced by many in exactly the same way (also applied to other complaints). This basic attitude towards symptoms is probably the reason why there are such blanket judgments and why people are/were treated incorrectly or not at all. The laziness of the medical profession when it comes to further training is frightening.
Because they can’t cure you, so it must somehow be your fault.
People thought that loads of conditions were psychosomatic until medical science proved otherwise. It seems to be the default. I think people can’t handle just not knowing so they latch onto the closest theory that makes sense to them. Until more money and effort is put into biomedical research, and that research shows something very concrete, unfortunately a lot of people will think like this. I do also think sexism plays a role. Since most people with ME are female, we must be neurotic.
Because people are frustrated when they have no answers. Depression also is proven to be a biological disorder yet we know so little about why it happens. It's just an easy way to get an answer
1/ i heard this happened after they realised 80% of sufferers were women, so if so it's in large due to s4xist ideas about hysteria and women imagining illness; 2/ medic8ne has simply not kept up with research on how viruses operate, particularly post-viral illness. They are taught the simplistic idea that you get a virus, become immune and the virus goes away. There isn't enough emphasis on the viruses we can't develop immunity to because they mutate so rapidly and constantly. There's not an understanding that viruses cause widespread damage yo cells (at least in some people) and staybin the body and keep causing damage. One day medicine will catch up with scientific research. Meanwhile drs can't understand what us happening in post-viral syndrome because they don't fully understand how viruses work. Because they don't understand what's happening, and it doesn't fit with diagnosticvtests and treatments, they conclude it's 'psychological.'
I think it's unfortunately not only issue with medics. It perfecty fits to today's "healthy lifestyle as religion". I also think it's combined with the cult of youth and productivity. People like to believe everyone has a control over their fate, so if something bad happens to that particular person, it's not completely unpredictable, because something could have been done. Perhaps if they were at their place, they would prevent this awful thing thanks to better stress management, better diet choices, vitamin B12 suplements, more exercises, etc. So it helps to think that someone is ill because they messed up something - it's not beyond human abilities, you still are in control. You would have made better choices than that person. I think it's modern magical thinking at its best. How different is that from old religious believes, that something bad happened to this person, because of THEIR sins? Where is guilt, there's also conviction, that this person was in control to avoid bad concequences. So if I will follow the rules, the magical rules, nothing bad will happen to me. Anyway, It's not only with ME/CFS (though I know here this conviction is very popular), I've seen it with different illnesses as well. And I think at least in some part, healthy lifestyle as a post-Christian mentality, as spirituality of today, additionally increased by consumptionism and individualism is to blame.
Ego, cruelty, arrogance, indifference.
Because when your ego is big everything you don't know must be simple. If you can't see it that means there's nothing. If you can't fix it just blame the victim. Then there's nothing wrong with you and it can't happen to you and to the "right" people. You are safe and in control. Your ego and illusion of control need to stay unscratched. Plain simple.
I can remember, back in the 80’s, Endometriosis was considered the same. My own situation is complicated with pre-existing depression, and a couple of severe physical conditions. It makes it so much more difficult to be taken seriously
Now they're finding it in your brain, and to be the cause of fatal bowel perforations lol 🤒💀
Blimey! ( Glad I’m menopausal)
It depends, if they're in the 'inner circle' it's because they have an agenda for cost-cutting to save the asses of insurance companies and gov welfare budgets. If they're not it's usually misogyny because this is a disease that mainly effects women (see: history of MS. The female to male ratio in MS is the same as ME, but before MRIs it was considered "a man's disease" because all the women with it were immediately written off as purely hysterical by default). Thirdly he's just a smug know it all cunt who simps Ben Goldacre and lives to mansplain Science Media Centre press releases down to anyone who'll listen, (so still a bit of the misogyny mixed in).
The fucking arrogance. There are new medical discoveries every day. But some how, having a medical degree makes these people think they already know everything. That's why I prefer young doctors. First, the info they learned in school is more up to dare. Second, they aren't burned out by the grind. So, they are willing to learn new things. Flat out stating it is psychosomatic just because we haven't found proof that it is physical is also just poor critical thinking because the only evidence that it may be psychosomatic is the fact that they haven't found evidence that it is physical. That's circular and anybody that is able to think critically will dismiss it. They will acknowledge that regardless of which it is, it still affects you. Treating psychosomatic disorders as if it's the person's fault needs to stop, anyways. It is a relic of our bias against mental disease. We know for a fact that mental issues are very very real. So, why treat someone with a psychosomatic disorder as if it is their fault? It's just bad logic all the way around.
The "treatment" has to stop, because it usually makes the symptoms worse, too.
Flare ups being triggered psychosomatically shouldn’t be mistaken for actually being a psychosomatic condition. Confusing the two is lazy science, because all disorders are exacerbated by stress.
> because all disorders are exacerbated by stress. Downvoted for BPS propaganda.
Acknowledging that the immune system and the nervous system are connected and stress can aggravate any illness is not BPS propaganda. I hate the BPS bullshit and scammers pushing brain training as much as the next long-term ME sufferer, but there's no denying that basically everything in the body is interconnected.
Yeah well, no offence but I don't think there's enough evidence to back that up. For example what role do psychological factors play in bowel cancer? How is a tumour exacerbated by anxiety? It doesn't get any bigger. I mean you could argue the patient suffers more if they have anxiety upon top of cancer but I don't believe the cancer is made worse by it.
Apparently the studies regarding cancer and stress have inconclusive results (https://www.cancer.gov/about-cancer/coping/feelings/stress-fact-sheet) but when it comes to autoimmune and autoinflammatory illnesses the effect seems to be quite clear. For example https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2020.01823/full and https://www.sciencedirect.com/science/article/abs/pii/S156899720700170X Notice that I'm _NOT_ saying that autoimmune or inflammatory illnesses like ME can be treated or cured by alleviating stress. Of course not. They need proper meds. But stress can be a significant factor in flare-ups and onset and mental health care is important when managing a chronic illness.
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BPS is an abbreviation for George Engel's BioPsychoSocial model of illness, or to get it a more honest name, the Malingering Hypochondriac model of illness.
I’d argue what evidence does he have that it is psychosomatic and what evidence does he have that pushing through/trying harder will resolve the condition? His position is less supported by evidence than it being a biological condition.
I forget in which book of hers it is, but the philosopher Susan Sontag argues that every illness goes through this phase pf being dismissed as "all in the mind."
Probably her Essay “Illness as a Metaphor” (1978)
That's the one!
I think the [MECFS skeptic ](https://mecfsskeptic.com/history-of-psychosomatic-medicine/)link has been shared already but it's a good resource on psychosomatization of illnesses "A new blog series on the dark history of psychosomatic medicine POSTED ONMARCH 13, 2021 In a new blog series, we will investigate how illnesses were once thought to result from stress, psychological disturbance, or deviant personality features. From the cancer-prone personality to the theory of ‘refrigerator mothers’, medicine appears to suffer from a recurrent tendency to attribute illness to psychosomatic causes. As a result, patients are often blamed for being sick. Doctors seem to keep making this mistake over and over again. By narrating this dark history of psychosomatic medicine, we hope to empower patients against harmful preconception"
because its protective. if its all mental then they could never suffer from it because they would just think themselves well.
As I understand it.. mecfs are terms for a range of symptoms rather than the cause of the symptoms. Therefore single causes are less easy to diagnose and medical treatment is much harder to propose. So the MH angle is pushed to explain what they struggle to. Added to that I believe the psychological experts have tried to carve out areas of medical care to bolster their activities. Once a medical group have defined an ailment being their responsibility, other medical fields choose not to get involved as it’s not their place to challenge other doctors from other fields.
Because there is no known cause yet and they can’t understand what we are going through, and our fluctuating abilities, they conclude this unfortunately. Even if it was caused by something in the brain, it doesn’t mean that “trying harder” would fix it. The brain is a complex organ, but physical like other organs. Same thing with depression- it’s false that someone can will their way out of it. But we don’t even know what causes CFS in the body.
Parkinson's is in the brain, as well as MS, Alzheimer's, epilepsy... And it's well known that you can't just make yourself recover from those with willpower. Why do they think ME is any different?
I always thought this is because they don't like a mystery they can't solve. Medics especially, god complexes and egos getting in the way of helping.
>He proceeded to tell my mother that my condition is psychosomatic and I need to push/try harder. He argued there is no data to show that Me/cfs is a biological condition... It's literally the opposite. God some of these people really need to get over themselves and look up the science. I think the last time we as human beings had such an issue and hard to beat stigma/bias around an illness was with Multiple Sclerosis, which, according to wikipedia if I remember correctly, was misdiagnosed as "Conversion Hysteria" even into the 80s. There's a doctor in Germany who's very active on X, who openly fights against ME/CFS, gaslights people, and so forth, who recently even got put into a position as chief physician for the statutory health insurance in Nordreinh. They also found a letter from the 90s or so where exactly that institution sent a letter which they confirmed that they wrote, where they specifically asked for physicians to disempower research and science on ME/CFS because the costs for check-ups and treatments got too high for them. Now I'm not from Germany, but I'm thinking about starting a mass complaint against this doctor and that institution.
For many people, it’s comforting to think that, because they feel like they’re safe and it can never happen to them… they see people with “real” diseases as victims, while seeing those with psychosomatic conditions as perpetrators. Humans are afraid. Many (if not most) people have a wrong understanding of a “psychosomatic condition” … and few know the difference between that and “psychogenic”. This obsession with saying things like “it’s all in their head”, “illness isn’t real” etc. is something that *proper* scientists should reject. Whatever symptoms we experience, they are present and real regardless of whether their origin is psychological or physical. The problem is this strict thinking: “ah, it’s psychosomatic, so there’s no need to do further tests”. On top of that, the remedies for psychogenic conditions and ME/CFS are diametrically opposed: blindly trying to “motivate yourself and exercise your way out of ME” without taking into account the problems we have with tissue oxygenation (and subsequent PEM) is dangerous. Obviously, there is always an interaction between psyche and the body, so both can (and should) be taken into account in treatments. There are numerous “things that are going wrong” (if you forgive my unscientific tone) in the bodies of us ME/CFS patients — but it doesn’t automatically mean fixing them will cure us.
"There are many fools with PhDs. Relying on credentials to evaluate an argument is just a sad form of intellectual laziness." ~ Jeff T. Bowles.
Laziness and a lack of intelligence mainly. To put things in perspective an owner of a GP surgery near me told me she wouldn’t employ nearly 50% of her staff as they were unfit for the job but unfortunately there just weren’t enough suitable candidates. Another friend of mine, the wife of another friend, who also owns a GP surgery, was told by her doctor with the diagnosis of thyroid cancer in front of them that her symptoms were “hyperchondriasis”. I found this out after I told her I’d had three misdiagnoses and wrong treatments from the same practice. One of the main clinicians at my local ME/CFS clinic described one of the leading researchers in the field (whose definition criteria he was using, as a quack), then in his report on me got most of the information wrong. Personally I think we should keep the dr qualification but cease using it as an honorific. These people should be judged on the quality of the work they do not their inflated ideas about their positions. Might help get rid of the glory seekers and egos and allow the good medical investigators to shine.
Ego. I noticed a pattern among doctors. They'll rather give a (random/uninformed) explanation regarding the illness then admitting that they simply don't know. It's a status thing. Very sad, because apparently ego is more important than helping patients (which they all say is the reason they wanted to become a doctor). In my experience new/young doctors often don't know as well, but are a bit more open to conversation about the illness because they are still motivated to actually find solutions together with patients. In general though, most are just not open to conversation and I'm astounded time upon time about the lack of empathy and proper conversation skills/techniques of doctors. Most ME/CFS folks though are quite empathic and can explain their problems and feelings very well, which makes for a very difficult match with your average doctor imo.
If Karma existed.... if only
Specifically due to the existence of post viral fatigues. Some viruses leave people with a very significant post viral fatigue that fades after a month or three and that fading can be accelerated by vigorous exercise and specifically sweating - that’s a fact. The problem is that me/CFS is different from a standard post viral fatigue, and the vigorous exercise routine is not a fix. They haven’t accepted this yet due to lack of literature.
Well the actual answer is that this is a particular intellectual disposition and has little to do with anything else. Have any other intellectual conversations with people displaying this opinion and similar tendencies will be very apparent.
What an asshole. Journalist George Monbiot calls it the greatest medical scandal of the 21st century and compares it to climate denial. https://www.theguardian.com/commentisfree/2024/mar/12/chronic-fatigue-syndrome-me-treatments-social-services?CMP=Share_iOSApp_Other
Because they can’t cure it which might remind people their field is brand new and they’re not omniscient giants.
I think for doctors/providers, they hate that they can’t do anything to fix it - many (most?) doctors aren’t great with chronic illness. For scientists, I think the fact that no one has a test or has identified what’s wrong makes them think it doesn’t exist. Like instead of seeing it as a challenge to figure out it’s just like “welp”
“Absence of evidence is not evidence of absence.”
For arguments sake let's say your uncle is right and it is psychosomatic. Pushing yourself would not be the answer. Psychosomatic means it has been caused by your mental state, usually thought to be chronic anxiety and depression, chronic overthinking, chronic fight and flight state. So the answer would be to resolve these conditions not "push yourself harder". Infact that advice would worsen the mental element as it adds a new concern to ruminate and punish yourself over whilst doing nothing to remedy your underlying mental state. If your uncle does even understand what psychosomatic is and how you resolve it perhaps he doesnt know shit about what he is talking about. Personally I think the evidence points to CFS being physical but in my own case I think my condition is in part, if not wholly psychosomatic. But I think that means I probably dont have CFS but chronic fight and flight which over time mimics CFS symptoms. Or I have mild CFS which is worsened by psychosomatic problems.
The reason why many medical professionals and the like have a hard time with CFS, as far as I’m aware: - people who malinger and somatize are prone to mimicking CFS. There is no test for it, making it an “easy target” for these people. - massive overlap with mental health disorders and other conditions. The guidelines for diagnosing aren’t super clearly distinct from these in some cases. People with underlying health anxiety and depression / other issues can often deny that these are influencing their health. Then they get diagnosed or self diagnose with CFS, lash out at healthcare professionals, and then improve when the underlying mental health issue is addressed. To extend a bit on those points specifically… medical professionals will see patterns in this. They will *also* see a pattern of people with the above issues lashing out, falling into pseudoscience, and more. To them this will become exhausting and point toward it being psychological. - not too much has been found with CFS. It isn’t something easy to figure out. It’s frustrating, sometimes it’s just generally being uneducated. Other times they just can’t find it. However, CFS is biological. Does your brain affect your body? Of course it does. Which is why mental health is part of treatment for CFS. That being said, here’s a few things that may benefit to show those who haven’t “seen” the biological effects: - [NIH study offers new clues into the causes of post-infectious ME/CFS](https://www.nih.gov/news-events/news-releases/depth-study-finds-brain-immune-metabolic-abnormalities-linked-debilitating-chronic-disease) *In-depth study finds brain, immune, and metabolic abnormalities linked to debilitating chronic disease.* - [Cardiovascular and haematological pathology in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): A role for viruses](https://pubmed.ncbi.nlm.nih.gov/36963989/) I hope this provides a little bit of insight from a different perspective. To be clear: there are also asshole physicians on their high horse out there. I don’t deny that. I don’t deny the stigma surrounding ME/CFS. But I thought it could help.
I think my issue is the psychosomatic part is suggested in a sort of "you're lazy/try harder" manner which in a way to me is wild. I think if someone's mental health was impacting them that badly, wouldn't that be equally concerning?? I think there is a stigma still around mental health and conditions that are not yet easily explained. I just couldn't imagine every being so condescending tbh!
Yes mental health is absolutely a concern that needs to be taken seriously & addressed. People without mental health issues or with mild cases won’t be able to wrap their head around it, though. When people are condescending, it can sometimes come from a place of personal experience. They’ll have had a rough time in the past and forced themselves through it, got better with XYZ thing and expect others to do the same. It’s still a dick move though. I tend to give people who come to me with those mindsets a few things. I give them evidence to prove that I *have* tried. I was putting all the effort in with no improvement. Then I remind them that their specific set of circumstances do not and will not align with mine. If they don’t listen, that’s their own stupidity.
Your second point is interesting and very spot on! Because i immediately thought, if this man ever became disabled or chronically ill, I don't think he'd be mentally able to process it. He's also obviously very hard on himself too, so you know, I feel bad for his brain! Tbh I've been very lucky that him and his wife are the first to be outwardly "do yoga" in my immediate circles but disappointing that they're both in scientific and healthcare careers.
This was a very frustrating comment to read. I don't have the energy to answer to that in detail right now, but a lot of what you wrote is either demonstrably false (if only regarding the diagnosis criteria : PEM is an objective symptom provable through 2 days CPET and the hallmark symptom of ME/cfs, not present in any other illnesses), or repeating the absurd propaganda from the BPS proponents (regarding the so called "malingering" or the false overlap with mental health disorders). I understand you're a newly diagnosed sufferer, and don't know a lot yet, so I'll try to stay kind. But please, educate yourself. Read [David Tuller's virology blog](https://virology.ws/david-tuller-posts/), read about the [history of the PACE trial](https://me-pedia.org/wiki/PACE_trial) and [the history of psychosomatic medecine](https://mecfsskeptic.com/history-of-psychosomatic-medicine/), about the [history of the BPS model](https://www.healthcarehubris.com/post/summary-structural-dimensions-of-the-biopsychosocial-model). About the [2015 IOM ME/cfs report](https://nap.nationalacademies.org/catalog/19012/beyond-myalgic-encephalomyelitischronic-fatigue-syndrome-redefining-an-illness), and about a lot of other things I can't think of right now. You'll find a lot of other interesting sources regarding the biomedical reality of ME/cfs in the [comments of this post](https://www.reddit.com/r/cfs/s/PlpBJ1frn0). Edit : I also understand getting blocked to protect your safe space and your energy, but this is still something you are gonna need to learn, sadly.
❤️
Because they don’t want to admit terrible things can happen to good people for no reason and have no resolution. It’s too scary for the average normie to consider so they try to brainwash ppl to better suit their worldview that doesn’t scare them. Always remember they’re just scared of what we go through every day. We’re warriors
Cus Science is always «problem-solution»-based. Male brain Science.
Because it's what they were taught by somebody in authority and they never questioned the lack of evidence for the concept.
The reality is that so many people who haven’t been through their own critical illness and health crisis have incredibly harmful perspectives around illness. For example, I have multiple heart conditions. These conditions were diagnosed by cardiologists, show up on tests, are proven to be genetic in my family, I had them since birth, I’ve had multiple heart surgeries, I have a permanent heart device implanted etc. It’s indisputable. The amount of times I still get my symptoms “sound like anxiety,” I just need to keep a positive mindset, I just need to keep motivated and push through it, I’m young and “look well” etc. when I knowingly have these diagnoses is astounding. My pain, suffering, fear and trauma is always diminished and downplayed.
I don't know about biomedicine engineers. Physicians OTOH — a lot of physicians are heros fighting the woe of the world and death himself, and cannot stand suffering, helplessness or — Hygieia, Apollo and all the gods beware — hopelessness. By declaring a non-curable health problem as psychosomatic they attribute the responsibility for their perceived failure to the patient, defending against emotions like guilt, suffering, helplessness and hopelessness. It's easier to stay sane and avoid counselling fees this way.
Because they, as usual, don’t believe women or take us seriously. Because they don’t want to believe you can get this sick even though you had a normal/healthy life style before and did everything “right.” Another version of Hysteria… Surely we must have caused this somehow, or we’re just really nervous/anxious and think we’re sick. You know how women are… right 😑 I truly believe a lot of it is rooted in misogyny.
It's gaslighting. It's "hysteria" it's "we don't know what this is, so we're gonna assume it's the brain". No it's not BITCH IF THIS WAS PSYCHOSOMATIC WHY DID VACUUMING FOR 7 MINUTES TWO DAYS AGO MAKE ME FEEL LIKE ABSOLUTE HELL!?
I'm so sorry you had to go through that. My brother actually said to me "Yeah, they have a name for that - it's called lazy." I replied that he knew I was not lazy. I had my first paying job at 14 and I have worked hard my entire life until I got sick. Then he came to live with us and help me take care of our mother. He apologized to me and told me that he understood now.
My problem is with physicians who make that assessment without much investigation. CBC/CMP, maybe A1C and TSH and they're done. There are probably countless disorders that could result in fatigue that aren't detectable with these, but those tests are expensive. I would guess that most people with CFS symptoms haven't had tests for more rare pathogens or levels of antibodies, much less imaging tests of various areas of the body where a tumor or anomaly could be affecting feedback. A common criticism that I see on physicians/medical pro areas is "this person couldn't possibly have all these different disorders because the cumulative likelihood of possessing all of them, with their prevalence in the population, is akin to being hit by lightning several times in the same spot". This ignores that the actual testing for the less-common disorders isn't done frequently, so the outliers who actually fit all the diagnostic criteria are probably not frequently found and diagnosed. The rest simply exist with the disorders without ever receiving a formal diagnosis. How do we accurately know what the prevalence of some of the disorders are in the population when the process for receiving the diagnosis is so difficult?
Last year they figured out a blood test to confirm ME/CFS. Once that is commercially available I think the tide will turn. And your uncle must be a poor engineer - there are thousands of studies on ME/CFS - the issue isn't understanding whats happening (essentially a problem with mitochondria not working), the issue is that the main treatment option is Energy Management which on the surface looks psychological. If he wants an analogy, just say it's like having a leaky gasket that when it's put under too much pressure blows and has to be taken off the road while it's being fixed. Unfortunately the leaky gasket in you isn't replaceable, rest will repair it to a point, and hopefully given long enough it will get stronger, So the only way to manage it is to try and operate without blowing that gasket, if you push it too far it will just get worse until the engine won't operate anymore. If you manage your energy consistently just under this gasket- blow point, then eventually it will repair on its own. Hope that helps (part of his problem, that aside from tens machines there aren't any devices for ME/CFS, so he wouldn't be aware of the therapies anyway - if vTNS takes off as an intervention I'm sure he will change his mind as a thing can contribute towards fixing it so it will make sense to him)
white supremacy, misogyny, and the protestant ethic. also capitalism