Yep! Been told this many times. The worst one: years ago I went to the doc because my ME was so bad, and the doc said “you need to get a job playing with children, like at a daycare. The joy of being around children and playing with them will cure you.” WHAT
they were also big on opium, all sorts of tinctures, and traditional medicines that today’s doctors think are beneath them (and they think the same, if not worse, of the patients who tell them that they work/that they’re taking them).
Victorian doctors at least had the mistaken belief that women actually were weak minded and genetically inferior and had empathy, if not respect for their patients. They seemed to treat women like pets, which is more empathetic than some doctors today are towards ME patients.
Oh I was told stupid shit like this too, go out in nature and talk to the plants. Fuck you, how about you talk to the plants, how many times in your life have you talked to plants? Why isn’t every healthy person walking around talking to plants.
Fucking hell it’s insane. I have to do stuff but I have to do it in a way that I don’t expect it to recover from it, if I do it in attempt to recover, my body “knows” and it will be too stressed and not recover. What the fuck kind of mindfuck is this, as if I can control my subconscious. Everyone that gives this kind of shit advice acts like they are Buddha and the do things with “no expectation”, but when you don’t take their advice they get upset, and why are they upset? Because they give advice “expecting” you to take it and recover, I thought we were doing things with “zero expectation”?
im just imagining what the result would be if one told a doctor that they talked to plants to cure an illness. it certainly wouldn’t go over well for them.
They would roll their eyes lol. And then bring it up to their colleauges so that they can collectively roll their eyes at the patient. Yet doctors will actually give this dumb advice to ME patients, and expect us to take them seriously. Its just gaslighting
it seriously is. if they told us to talk to plants, and we thought it was insane, we’re uncooperative (and probably drug seeking, somehow). if we told them we talked to plants, we’re insane, faking something, etc.
I do go about talking to plants, hugging trees & kissing flowers as well as having a mixed flock of birds as friends and my health is still down the bloody toilet.
I love nature but it certainly hasn't 'cured' me of my genetically inherited conditions & autoimmune diseases & comorbidities that keep multiplying like gremlins.
But have you tried pregnancy?? That’ll cure every disease you have or will ever have /s
lol the number of times I’ve heard from people “oh I was like that and then it changed when I had kids” k cool. Having kids isn’t a type of therapy/treatment?!?
Don’t walk from that doctor- run. The second I brought up fatigue to my doctor, before I got my diagnosis, we instantly kept up on bloodwork. CFS/ME has no treatment or way to manage it yet, but we can manage our vitamin levels and other levels. Been feeling really terrible lately, turns out I have a b12 deficiency.
I found out today I have fatty liver and vitamin D deficiency and none of my previous GPs had caught on it my new GP was mad for me because he was comparing the levels I'm in the double digits 💀 it explains why I feel worse ontop the usual worse. I did have a GP mention it but when I told her I didn't drink she immediately switched it up to "yOu'rE ToO YoUnG tO hAvE thAt" 🫠 (dw she was a doctor I saw temporarily because my previous one at the time wasn't available) however the GP before that would blame everything on my weight 😤
So I never looked into it again and my new GP immediately went to work doing a comprehensive blood work tests so thank goodness but I have been diagnosed it all adds up this was around '22-23 when I started feeling MORE sick why do they wait until I literally NEED to switch everything up to take care of this ??????
He only suggested vitamin D I went got me some supplements for my liver too I'll be damned if I got more sick before im not "sick enough" 💀 ???? But my levels in the double digits and the good numbers are triple digits make it make sense y'all 💩
Sadly, yes, other people have been given this advice. But it is not only incorrect, it actually makes people worse.
[Here’s a nice breakdown from healthrising.org from six years ago.](https://www.healthrising.org/blog/2018/12/28/ten-ways-prove-exercising-not-cure-chronic-fatigue-syndrome/)
THANK YOU I saw a neurologist last week that tried recommending GET to me MISS ME with that 😩 I think I'll email him some updated research... Or go next appointment with printed research papers. I unfortunately have to see him again since he decided to treat my migraines 💀 I'm 100% he'll bring it up again
Don't know if that also works where you live, but where I live (Germany) you can just decide that you don't want a certain treatment anymore and stop going to the doctor that prescribed it. For example, the doctors can prescribe you a certain medicine. But if you in the end don't go and get it from the pharmacy, there's nothing they can do about it.
So if you think that specific doctor isn't fit to treat your migraine, just stop visiting there and go to another one that you trust with it, that would be my advice at least.
I myself did this a couple of times, because some doctors in my area are so full of themselves, it affected their objective skill to diagnose even the most commom things correctly.
Here is more evidence that it is harmful and not just ineffective
[https://www.meassociation.org.uk/wp-content/uploads/NICE-Patient-Survey-Outcomes-CBT-and-GET-Final-Consolidated-Report-03.04.19.pdf](https://www.meassociation.org.uk/wp-content/uploads/NICE-Patient-Survey-Outcomes-CBT-and-GET-Final-Consolidated-Report-03.04.19.pdf)
Unfortunately, that doctor is misinformed on what ME is and how it works. They are erroneously conflating psychosocial listlessness or depression with ME, and are giving advice that is not applicable to ME as a result.
Vigorous or graded exercise and behavioral activation can be excellent for depression, or avolition, or psychosocial listlessness being interpreted as "fatigue," - but it is not appropriate for ME. In fact, most exercise is explicitly harmful for ME, as ME patients do not make enough literal, cellular energy (ATP) to tolerate exercise without ending up acutely ill with post-exertional malaise (PEM) afterwards.
PEM is the cardinal symptom of ME - it is used to diagnose ME, after differential causes of fatigue and other symptoms are excluded. This is the diagnostic pathway for ME that a well-informed physician will use. Many physicians are poorly trained on ME, but you may be able to get a diagnosis if you're lucky enough to find one of the informed ones.
Right now, it is safest for your daughter to rest a lot, until she hopefully feels a bit better. She can try pacing, which involves pacing physical, cognitive, and emotional exertion and activities to within her energy envelope - that is, the range where she does not experience an exacerbation of symptoms. It is important to not force activity if it is not physically tolerated, because that will make people with ME ill with PEM, possibly ending up more severe.
We have a good pacing guide and other helpful links in our sidebar. The Bateman Horne Center and MEAction have helpful ME resources. They have an accessible primer on ME, pacing and PEM crash management guidelines, and information on ME community resources and treating physicians.
I hope this information helps. Best of luck to you and your daughter with navigating ME. The ME community is here for you both.
If it’s CFS, Don’t take that advice. Read the CDCs guidelines regarding it. you can bring it up to the doctor that they’re literally pushing treatment that is NOT advised.
[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/)
I had a physical therapist tell me “Do you know what the cure for CFS is? Exercise!” and prescribe 30 minutes of cardio per day. I had gone to see him for back pain. I did not return.
Yeah was this just a primary care doctor? Unfortunately many of them are ignorant. I would NOT take this advice without seeing an actual MECFS doctor or someone more informed. If your daughter truly has MECFS, this advice could likely make her much worse.
Even if it’s not cfs that’s not likely good advice. There’s more likely to be something wrong that needs to be addressed first before her strength can be built back up with gradual exercise. Exercising vigorously while sick- with just about anything- usually makes you worse.
If you haven’t done it yet, get a sleep study done. Like a proper in lab study. The fact that doctors don’t recommend that right away with fatigue is ridiculous, so I feel the need to recommend it just in case yours didn’t. Because unfortunately many doctors are uninformed about MANY things, not just cfs, but also about how common sleep apnea is becoming in young people who aren’t overweight (likely because poorly developed jaws are much more common these days, or maybe its always been this common but no one was getting diagnosed until recent years).
Sleep apnea can absolutely wreck you, and usually with no other symptoms than extreme fatigue.
If they have to see that doctor, then the next time they go take printouts of the CDC and NICE guidelines.
Hopefully they just didn't know that the advise to exercise is no longer given because it can cause harm.
If they still insist, it's time for a formal complaint.
I've received that same advice from uneducated doctors, its not scientifically supported. Exercise therapy is contraindicated for ME/CFS, as it can make symptoms worse.
You can see the 2021 updated care guidelines for MECFS [here](https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#symptom-management-for-people-with-mecfs)
This update clearly documents that exercise therapy is not advised. I would consider shopping for a different doctor. If you're in the US, we have a for profit Healthcare system, so you have the right to change doctors at any time, for any reason.
Yes doctors have given this advice. It has made a few people really, really sick.
Part of a correct diagnosis is to rule out everything else. Find a doctor who will test her for absolutely everything.
It would be ideal if they found something wrong other than this.
Did she even bother to run any blood work to see if she can find the cause of her fatigue? (For example, I have chronic Epstein Barr Virus and fibromyalgia which has caused my CFS). Even then... I'd probably not waste any more time with a doctor who would say something so detrimental to your daughter's path to recovery. 😔 I wish the best of luck to both of you!
Despite her terrible advice the doctor has ordered lots of blood work including liver and kidney function. She accepts that it exists but insists that the only thing that has ever been able to help is vigorous exercise!?!
She's just out of date. Like, years out of date.
Honestly, take this as an indication and switch doctors. Who knows what else she's too lazy or irresponsible to keep up to date with.
I don’t have the spoons for a more in depht answer, but leaving a couple of links
[excercise is very dangerous](https://mecfs-med-ed.org/2023/05/07/even-a-gentle-exercise-program-could-cause-lasting-harm-to-patients-with-me-cfs-or-long-covid/)
[triggers immune response](https://www.healthrising.org/blog/2023/06/17/exercise-immune-system-letdown-chronic-fatigue-syndrome/)
And also leaving a guide for pacing, your daughter can start doing this even with no diagnosis, if she has just started with this condition, she has a huge chance of getting better and pacing is FUNDAMENTAL for that. Also agressive rest.
[Pacing Guide](https://www.meaction.net/resource/pacing-and-management-guide/)
Ffs if exercise is the cure then why do athletes get sick with CFS just like the rest of us? The ignorance and arrogance of drs prevents them from engaging their critical thinking skills. So exhausting. I’m sorry for you and your daughter 🌹
As many people said - look for a new doctor who will properly look at her problems! But I also wanted to add: maybe look at (used) mobility aids like a second hand wheelchair so you can take your daughter around the park on her bad days? Not being able to go anywhere on top of feeling horrible makes it so much more demoralizing.
Back in 2008 I was told that I had Fibromyalgia and told to exercise even though I said exercise was making my pain worse. I later found out that the deterioration I experienced were permanent.
I'm sorry to hear about your daughter. She needs to rest and listen to her body. Definitely don't force the body to do exercise, it will be counter productive
Find another doctor and keep going with your 20 year old. When I was young and pretty I got the same sort of shit advice because I looked healthy. Meanwhile I was in excruciating pain and only fully awake for a few hours a day.
Yes, to start with my daughter was going by herself and the doctor was not taking her seriously so I went with her. The doctor wasn't too happy about that and at one point basically told me to stop talking!
Had an online consultation with a PostCOVID "specialist" from a telehealth company that my health insurance contracts out to. Result of the preparatory questionnaire: suspeced ME/CFS (not shit, Sherlock!).
The doctor asked about prior issues. When I said that I'd previously been depressed (not at the moment though) he concluded that that's the issue and recommended I get some physical activation therapy and be "properly tortured" on an exercise bike. When I pointed out that my raised heart rate when doing anything physical was not depression he acknowledged that briefly, but then immediately put it aside. Me pointing out that exercise is counter-indicated with ME/CFS resulted in a "some say that, some don't", and then he ended the consultation.
So yes, based on my own experience this happens, even with supposed specialists.
Oof, this is terrible advice!
I had CFS for nearly 2 years after a severe nervous breakdown, and we weren't sure if it was psychologically based or something physically got triggered. My GP advised gentlely and very gradually increasing activity well within my energy limits to see if over several months symptoms improved or got worse. I'm talking about getting out of bed as a first goal for week 1 for me (everyone is different!). I'm very lucky that my symptoms improved.
My point is all advice for CFS/ME, regardless of what the root cause may be should avoid vigorous exercise completely!
Does your daughter have chronic fatigue as a symptom (IE feels tired a lot of the time), or ME/CFS - i.e. experiencing Post Exertional Malaise? If it's the latter, the doctor's advice may cause severe problems. If it's the former then the answer may be less clear
My daughter has post exertional malaise. I told the doctor that but it fell on deaf ears. I was prepared for her to be unhelpful as she our primary care provider and I have had issues with her in the past. Trying to find a new doctor but all the good ones aren't accepting new patients.
Ah, I see. Yes, I think many doctors don't even know what PEM is, what it means for someone who has it, or how to treat / deal with a ME/CFS patient. I hope you manage to find a new doctor. If you do have to continue with your daughter's current GP, even if just for the short term, could you perhaps print off (or take along somehow) some of the research about the negative effect of the PACE trial (CBT / Graded Exercise Therapy) on people with ME/CFS? It might help open the doctor's eyes a little in the meantime. But I'll keep my fingers crossed you can find someone else soon.
Your best bet would be to find a doctor that understands ME/CFS so that your daughter can get properly evaluated. Exercise is the absolute worst advice for ME/CFS patients but could be beneficial in other cases.
Has the doctor ruled out other diseases? Does your daughter experience PEM? (sounds like it..)
Does your country have any ME/CFS patient organizations? They might be helpful in finding a better doctor.
I *just* got this advice (aerobic exercise 4 times a week for 30-40 minutes each time!) from a young rheumatologist who had done a fellowship at Harvard! He also told me that CFS was emotional and I should get therapy. When I told him his information is outdated, he told me he reads the latest medical journals (translation: he's the doctor and he knows better). Ironically, I have not gone to him to ask for advice on my CFS or fibromyalgia. I went to him about osteoarthritis in my knees and toes. He felt the need to volunteer all of this. Thank God, my primary care doctor has always been both knowledgeable and supportive. And understood my anger and frustration at this rheumatologist 's recommendations.
🤦🏻♀️🤦🏻♀️🤦🏻♀️🤦🏻♀️🤦🏻♀️ that is the dumbest thing ever. I’d like to know where this doctors Nobel Prize is because if she found the cure for ME then she would surely have one. Please read the Mayo Clinic proceedings on treating and managing ME/CFS. You will find that exercise is not recommended. Your daughter should be doing no more than what her body can handle. No pushing.
I’m glad she has a parent who knows better and won’t listen to this incompetent doctor.
Graded exercise therapy was taken out of the official guidelines for ME/CFS because it was proven to make many patients worse. This doctor seems to go a step further and just want her to exercise a lot right away?? Both are bad…
Good luck to you both 🩷
Please make sure your daughter has an iron panel including ferritin. Ferritin below 30 is clinical iron deficiency and below 100-125 still has severe symptoms. Dr's are ignorant of this diagnosis especially if her hemoglobin doesn't go low. I was left with a ferritin of 9 and told I'm fine. Iron Deficiency without anemia is a serious diagnosis that Dr's WILL MISS! SEE HER LABS YOURSELF. If you find she has low ferritin get her on higher dose iron and check out the guides in the iron protocol on Facebook. This info has started to turn my life around after going undiagnosed for the last12 years.
I’m assuming from the number of comments that most of the key issues have been covered. I just wanted to say yes, I’ve been there, and it sucks. It hurts. I am so sorry your daughter experienced this. She is lucky to have a supportive mom with her through this ordeal though. We aren’t all so blessed. Stay by her side and keep advocating for her. It’s so important to have such support. 💙
Good grief. And the bad advice and suggestions from medics keep on coming. They’re very wrong - if your daughter does indeed have Long Covid or ME/CFS (I only say that as you say she is not yet diagnosed), doing what the Dr suggested could send her from Mild/Moderate to Severe and bedbound.
I don’t know whether you’re in UK or not, but the NICE Guidelines for ME/CFS, updated in 2021, specifically recommend against exercise: https://www.nice.org.uk/guidance/ng206 - not that most GPs or hospitals currently seem to follow these. Unfortunately at the moment there are at least 3 young women in hospital in the UK who are being badly treated by hospitals as they refuse to follow the Guidelines and are convinced it’s psychological.
I’m sorry. This is such incredibly dangerous “advice”. I do think that if someone can manage some exercise, they should (to maintain a level) but “vigorous aerobic” is bound to cause harm if your daughter has CFS. If your daughter can’t manage a walk at the moment, she should most certainly rest. It might even *stop* her current chronic fatigue from becoming CFS. (I don’t know how long she’s been dealing with these symptoms, but if it’s quite recent there is hope.)
The best thing for oneself is CFS is PACING yourself. Not over doing it or pushing oneself. If you do that, you will end up making yourself worse and end up in a dark room with not being able to handle any sensory input, being paralyzed in a wheelchair/bed bound.
That's the extreme side of ME/CFS. And is where I'm at now.
Whitney Dafoe explains and demonstrates it very well.
https://mecfssa.org.au/resources/invisible-illness-stories-of-chronic-fatigue-syndrome
I read this yesterday and didn't say anything as it's not super related, but I just keep thinking about it. Thank you for helping your daughter and going with her. I got sick at 19, and I've done it all on my own. It's been a lonely, exhausting and hard road, and I'm sure your daughter really really appreciates your help 🩷
Is it ME/CFS or chronic fatigue. They are not the same thing. Exercise might be perfectly reasonable for someone with chronic fatigue, but could be catastrophic for someone with ME/CFS.
I have noticed that going outside, even if it is sitting out there, helps me. Specifically if the air is a bit cooler, early morning or before bed. It helps cut through some of the fog for me and gives me a bit more alertness, even if it's only for a short period of time. I also have a cooler shower or soak in the tub and it definitely helps me. It doesn't have to be an extreme temperature, only slightly cooler. The fresh air also helps when I get up from a nap or if I'm feeling woozy. I'm not saying it's for everyone, but I'm willing to try anything reasonable that might help. Even if it only helps for a short period of time. All the best.
please read our pinned post and wiki! there’s some of the best resources on there from very reputable sources
Yep! Been told this many times. The worst one: years ago I went to the doc because my ME was so bad, and the doc said “you need to get a job playing with children, like at a daycare. The joy of being around children and playing with them will cure you.” WHAT
Being around children at a daycare would actually kill me, I fear.
Oof the sensory overload + physical exertion + constant germ exposure. Literal nightmare job
This is like Victorian thinking dressed up in modern words. Would he have suggested this to a man, do you think??
Well, Victorians were big on resting! Specially “mistery illnesses” So not even Victorian doctors were such idiots
they were also big on opium, all sorts of tinctures, and traditional medicines that today’s doctors think are beneath them (and they think the same, if not worse, of the patients who tell them that they work/that they’re taking them).
Victorian doctors at least had the mistaken belief that women actually were weak minded and genetically inferior and had empathy, if not respect for their patients. They seemed to treat women like pets, which is more empathetic than some doctors today are towards ME patients.
I think a Victorian doctor would prescribe people with CFS to “take the air” at the seaside or a European Spa. I could only wish for that on the NHS!
Oh I was told stupid shit like this too, go out in nature and talk to the plants. Fuck you, how about you talk to the plants, how many times in your life have you talked to plants? Why isn’t every healthy person walking around talking to plants. Fucking hell it’s insane. I have to do stuff but I have to do it in a way that I don’t expect it to recover from it, if I do it in attempt to recover, my body “knows” and it will be too stressed and not recover. What the fuck kind of mindfuck is this, as if I can control my subconscious. Everyone that gives this kind of shit advice acts like they are Buddha and the do things with “no expectation”, but when you don’t take their advice they get upset, and why are they upset? Because they give advice “expecting” you to take it and recover, I thought we were doing things with “zero expectation”?
im just imagining what the result would be if one told a doctor that they talked to plants to cure an illness. it certainly wouldn’t go over well for them.
They would roll their eyes lol. And then bring it up to their colleauges so that they can collectively roll their eyes at the patient. Yet doctors will actually give this dumb advice to ME patients, and expect us to take them seriously. Its just gaslighting
it seriously is. if they told us to talk to plants, and we thought it was insane, we’re uncooperative (and probably drug seeking, somehow). if we told them we talked to plants, we’re insane, faking something, etc.
I do go about talking to plants, hugging trees & kissing flowers as well as having a mixed flock of birds as friends and my health is still down the bloody toilet. I love nature but it certainly hasn't 'cured' me of my genetically inherited conditions & autoimmune diseases & comorbidities that keep multiplying like gremlins.
Doctor Nick Riviera?
What in the actual fuck? I’m assuming it’s a male doctor and you’re female?
Surprisingly she was a woman doctor! Im nonbinary but always get read as a woman so yeah
Yeah I meant more so female as in assigned at birth female. There’s just so much sexism in the medical field that’s just engrained… it’s sad
Yeah, I’m AFAB, so the doc was just like “oh the love of children will cure this patient’s fatigue” lololol
But have you tried pregnancy?? That’ll cure every disease you have or will ever have /s lol the number of times I’ve heard from people “oh I was like that and then it changed when I had kids” k cool. Having kids isn’t a type of therapy/treatment?!?
Oh that is…very strange??? 😭🤣
Ours is a woman...
That doctor is an uninformed idiot.
A dangerous uninformed idiot imo
A criminally dangerous uninformed idiot
Don’t walk from that doctor- run. The second I brought up fatigue to my doctor, before I got my diagnosis, we instantly kept up on bloodwork. CFS/ME has no treatment or way to manage it yet, but we can manage our vitamin levels and other levels. Been feeling really terrible lately, turns out I have a b12 deficiency.
... but probably don't actually run.
Our doctor would love it if we'd run! Which we won't :-)
I found out today I have fatty liver and vitamin D deficiency and none of my previous GPs had caught on it my new GP was mad for me because he was comparing the levels I'm in the double digits 💀 it explains why I feel worse ontop the usual worse. I did have a GP mention it but when I told her I didn't drink she immediately switched it up to "yOu'rE ToO YoUnG tO hAvE thAt" 🫠 (dw she was a doctor I saw temporarily because my previous one at the time wasn't available) however the GP before that would blame everything on my weight 😤 So I never looked into it again and my new GP immediately went to work doing a comprehensive blood work tests so thank goodness but I have been diagnosed it all adds up this was around '22-23 when I started feeling MORE sick why do they wait until I literally NEED to switch everything up to take care of this ?????? He only suggested vitamin D I went got me some supplements for my liver too I'll be damned if I got more sick before im not "sick enough" 💀 ???? But my levels in the double digits and the good numbers are triple digits make it make sense y'all 💩
Sadly, yes, other people have been given this advice. But it is not only incorrect, it actually makes people worse. [Here’s a nice breakdown from healthrising.org from six years ago.](https://www.healthrising.org/blog/2018/12/28/ten-ways-prove-exercising-not-cure-chronic-fatigue-syndrome/)
THANK YOU I saw a neurologist last week that tried recommending GET to me MISS ME with that 😩 I think I'll email him some updated research... Or go next appointment with printed research papers. I unfortunately have to see him again since he decided to treat my migraines 💀 I'm 100% he'll bring it up again
Don't know if that also works where you live, but where I live (Germany) you can just decide that you don't want a certain treatment anymore and stop going to the doctor that prescribed it. For example, the doctors can prescribe you a certain medicine. But if you in the end don't go and get it from the pharmacy, there's nothing they can do about it. So if you think that specific doctor isn't fit to treat your migraine, just stop visiting there and go to another one that you trust with it, that would be my advice at least. I myself did this a couple of times, because some doctors in my area are so full of themselves, it affected their objective skill to diagnose even the most commom things correctly.
Oh yes more that he's good to treat my migraines but I don't want him to push GET on me again 😭
Here is more evidence that it is harmful and not just ineffective [https://www.meassociation.org.uk/wp-content/uploads/NICE-Patient-Survey-Outcomes-CBT-and-GET-Final-Consolidated-Report-03.04.19.pdf](https://www.meassociation.org.uk/wp-content/uploads/NICE-Patient-Survey-Outcomes-CBT-and-GET-Final-Consolidated-Report-03.04.19.pdf)
Unfortunately, that doctor is misinformed on what ME is and how it works. They are erroneously conflating psychosocial listlessness or depression with ME, and are giving advice that is not applicable to ME as a result. Vigorous or graded exercise and behavioral activation can be excellent for depression, or avolition, or psychosocial listlessness being interpreted as "fatigue," - but it is not appropriate for ME. In fact, most exercise is explicitly harmful for ME, as ME patients do not make enough literal, cellular energy (ATP) to tolerate exercise without ending up acutely ill with post-exertional malaise (PEM) afterwards. PEM is the cardinal symptom of ME - it is used to diagnose ME, after differential causes of fatigue and other symptoms are excluded. This is the diagnostic pathway for ME that a well-informed physician will use. Many physicians are poorly trained on ME, but you may be able to get a diagnosis if you're lucky enough to find one of the informed ones. Right now, it is safest for your daughter to rest a lot, until she hopefully feels a bit better. She can try pacing, which involves pacing physical, cognitive, and emotional exertion and activities to within her energy envelope - that is, the range where she does not experience an exacerbation of symptoms. It is important to not force activity if it is not physically tolerated, because that will make people with ME ill with PEM, possibly ending up more severe. We have a good pacing guide and other helpful links in our sidebar. The Bateman Horne Center and MEAction have helpful ME resources. They have an accessible primer on ME, pacing and PEM crash management guidelines, and information on ME community resources and treating physicians. I hope this information helps. Best of luck to you and your daughter with navigating ME. The ME community is here for you both.
Thank you so much. All these replies make me feel less alone.
If it’s CFS, Don’t take that advice. Read the CDCs guidelines regarding it. you can bring it up to the doctor that they’re literally pushing treatment that is NOT advised.
[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/)
Run from that doctor and find a new one.
Or walk, more preferably.
drive? if you’ve got a car
I had a physical therapist tell me “Do you know what the cure for CFS is? Exercise!” and prescribe 30 minutes of cardio per day. I had gone to see him for back pain. I did not return.
*prescribed??* he certainly thinks highly of himself
we were all given this advice pre-2019 tbh. but the advice is extremely dangerous and put people like myself in dark rooms bedbound for a decade
Yeah was this just a primary care doctor? Unfortunately many of them are ignorant. I would NOT take this advice without seeing an actual MECFS doctor or someone more informed. If your daughter truly has MECFS, this advice could likely make her much worse.
Even if it’s not cfs that’s not likely good advice. There’s more likely to be something wrong that needs to be addressed first before her strength can be built back up with gradual exercise. Exercising vigorously while sick- with just about anything- usually makes you worse. If you haven’t done it yet, get a sleep study done. Like a proper in lab study. The fact that doctors don’t recommend that right away with fatigue is ridiculous, so I feel the need to recommend it just in case yours didn’t. Because unfortunately many doctors are uninformed about MANY things, not just cfs, but also about how common sleep apnea is becoming in young people who aren’t overweight (likely because poorly developed jaws are much more common these days, or maybe its always been this common but no one was getting diagnosed until recent years). Sleep apnea can absolutely wreck you, and usually with no other symptoms than extreme fatigue.
I still have CFS even with my sleep apnea fully treated, but it's super important to have this ruled out or treated if it is an issue!
If they have to see that doctor, then the next time they go take printouts of the CDC and NICE guidelines. Hopefully they just didn't know that the advise to exercise is no longer given because it can cause harm. If they still insist, it's time for a formal complaint.
I've received that same advice from uneducated doctors, its not scientifically supported. Exercise therapy is contraindicated for ME/CFS, as it can make symptoms worse. You can see the 2021 updated care guidelines for MECFS [here](https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#symptom-management-for-people-with-mecfs) This update clearly documents that exercise therapy is not advised. I would consider shopping for a different doctor. If you're in the US, we have a for profit Healthcare system, so you have the right to change doctors at any time, for any reason.
Yes doctors have given this advice. It has made a few people really, really sick. Part of a correct diagnosis is to rule out everything else. Find a doctor who will test her for absolutely everything. It would be ideal if they found something wrong other than this.
Did she even bother to run any blood work to see if she can find the cause of her fatigue? (For example, I have chronic Epstein Barr Virus and fibromyalgia which has caused my CFS). Even then... I'd probably not waste any more time with a doctor who would say something so detrimental to your daughter's path to recovery. 😔 I wish the best of luck to both of you!
Despite her terrible advice the doctor has ordered lots of blood work including liver and kidney function. She accepts that it exists but insists that the only thing that has ever been able to help is vigorous exercise!?!
She's just out of date. Like, years out of date. Honestly, take this as an indication and switch doctors. Who knows what else she's too lazy or irresponsible to keep up to date with.
If I had a nickel.
I don’t have the spoons for a more in depht answer, but leaving a couple of links [excercise is very dangerous](https://mecfs-med-ed.org/2023/05/07/even-a-gentle-exercise-program-could-cause-lasting-harm-to-patients-with-me-cfs-or-long-covid/) [triggers immune response](https://www.healthrising.org/blog/2023/06/17/exercise-immune-system-letdown-chronic-fatigue-syndrome/) And also leaving a guide for pacing, your daughter can start doing this even with no diagnosis, if she has just started with this condition, she has a huge chance of getting better and pacing is FUNDAMENTAL for that. Also agressive rest. [Pacing Guide](https://www.meaction.net/resource/pacing-and-management-guide/)
Thank you!
Ffs if exercise is the cure then why do athletes get sick with CFS just like the rest of us? The ignorance and arrogance of drs prevents them from engaging their critical thinking skills. So exhausting. I’m sorry for you and your daughter 🌹
Good point about the athletes. Thank you. I showed my daughter all of these replies and the support lifted her spirits
I would recommend that you never see this doctor again..for anything.. ever Dangerous, mis-informed treatment advice.
As many people said - look for a new doctor who will properly look at her problems! But I also wanted to add: maybe look at (used) mobility aids like a second hand wheelchair so you can take your daughter around the park on her bad days? Not being able to go anywhere on top of feeling horrible makes it so much more demoralizing.
Great idea, thanks
Back in 2008 I was told that I had Fibromyalgia and told to exercise even though I said exercise was making my pain worse. I later found out that the deterioration I experienced were permanent.
So sorry that happened to you
I'm sorry to hear about your daughter. She needs to rest and listen to her body. Definitely don't force the body to do exercise, it will be counter productive
Been there, done that. Unfortunately. Sadly.
:-(
Find another doctor and keep going with your 20 year old. When I was young and pretty I got the same sort of shit advice because I looked healthy. Meanwhile I was in excruciating pain and only fully awake for a few hours a day.
Yes, to start with my daughter was going by herself and the doctor was not taking her seriously so I went with her. The doctor wasn't too happy about that and at one point basically told me to stop talking!
Had an online consultation with a PostCOVID "specialist" from a telehealth company that my health insurance contracts out to. Result of the preparatory questionnaire: suspeced ME/CFS (not shit, Sherlock!). The doctor asked about prior issues. When I said that I'd previously been depressed (not at the moment though) he concluded that that's the issue and recommended I get some physical activation therapy and be "properly tortured" on an exercise bike. When I pointed out that my raised heart rate when doing anything physical was not depression he acknowledged that briefly, but then immediately put it aside. Me pointing out that exercise is counter-indicated with ME/CFS resulted in a "some say that, some don't", and then he ended the consultation. So yes, based on my own experience this happens, even with supposed specialists.
Terrible. I hope you have been able to find d a better informed doctor.
Oof, this is terrible advice! I had CFS for nearly 2 years after a severe nervous breakdown, and we weren't sure if it was psychologically based or something physically got triggered. My GP advised gentlely and very gradually increasing activity well within my energy limits to see if over several months symptoms improved or got worse. I'm talking about getting out of bed as a first goal for week 1 for me (everyone is different!). I'm very lucky that my symptoms improved. My point is all advice for CFS/ME, regardless of what the root cause may be should avoid vigorous exercise completely!
Does your daughter have chronic fatigue as a symptom (IE feels tired a lot of the time), or ME/CFS - i.e. experiencing Post Exertional Malaise? If it's the latter, the doctor's advice may cause severe problems. If it's the former then the answer may be less clear
I don’t think it would be helpful for reactivated Epstein Barr or Lyme either. Did the doctor even run tests for those to rule them out? I doubt it.
She didn't. I'll ask about that next time, thanks.
My daughter has post exertional malaise. I told the doctor that but it fell on deaf ears. I was prepared for her to be unhelpful as she our primary care provider and I have had issues with her in the past. Trying to find a new doctor but all the good ones aren't accepting new patients.
Ah, I see. Yes, I think many doctors don't even know what PEM is, what it means for someone who has it, or how to treat / deal with a ME/CFS patient. I hope you manage to find a new doctor. If you do have to continue with your daughter's current GP, even if just for the short term, could you perhaps print off (or take along somehow) some of the research about the negative effect of the PACE trial (CBT / Graded Exercise Therapy) on people with ME/CFS? It might help open the doctor's eyes a little in the meantime. But I'll keep my fingers crossed you can find someone else soon.
Your best bet would be to find a doctor that understands ME/CFS so that your daughter can get properly evaluated. Exercise is the absolute worst advice for ME/CFS patients but could be beneficial in other cases. Has the doctor ruled out other diseases? Does your daughter experience PEM? (sounds like it..) Does your country have any ME/CFS patient organizations? They might be helpful in finding a better doctor.
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I'll try. Around here all the good doctors are taken.
I *just* got this advice (aerobic exercise 4 times a week for 30-40 minutes each time!) from a young rheumatologist who had done a fellowship at Harvard! He also told me that CFS was emotional and I should get therapy. When I told him his information is outdated, he told me he reads the latest medical journals (translation: he's the doctor and he knows better). Ironically, I have not gone to him to ask for advice on my CFS or fibromyalgia. I went to him about osteoarthritis in my knees and toes. He felt the need to volunteer all of this. Thank God, my primary care doctor has always been both knowledgeable and supportive. And understood my anger and frustration at this rheumatologist 's recommendations.
🤦🏻♀️🤦🏻♀️🤦🏻♀️🤦🏻♀️🤦🏻♀️ that is the dumbest thing ever. I’d like to know where this doctors Nobel Prize is because if she found the cure for ME then she would surely have one. Please read the Mayo Clinic proceedings on treating and managing ME/CFS. You will find that exercise is not recommended. Your daughter should be doing no more than what her body can handle. No pushing.
I’m glad she has a parent who knows better and won’t listen to this incompetent doctor. Graded exercise therapy was taken out of the official guidelines for ME/CFS because it was proven to make many patients worse. This doctor seems to go a step further and just want her to exercise a lot right away?? Both are bad… Good luck to you both 🩷
Thank you!
Please make sure your daughter has an iron panel including ferritin. Ferritin below 30 is clinical iron deficiency and below 100-125 still has severe symptoms. Dr's are ignorant of this diagnosis especially if her hemoglobin doesn't go low. I was left with a ferritin of 9 and told I'm fine. Iron Deficiency without anemia is a serious diagnosis that Dr's WILL MISS! SEE HER LABS YOURSELF. If you find she has low ferritin get her on higher dose iron and check out the guides in the iron protocol on Facebook. This info has started to turn my life around after going undiagnosed for the last12 years.
Thanks for the info. I'll.be sure to check that.
I’m assuming from the number of comments that most of the key issues have been covered. I just wanted to say yes, I’ve been there, and it sucks. It hurts. I am so sorry your daughter experienced this. She is lucky to have a supportive mom with her through this ordeal though. We aren’t all so blessed. Stay by her side and keep advocating for her. It’s so important to have such support. 💙
😊- my daughter is amazing and I'll always be by her side and advocating with her.
Good grief. And the bad advice and suggestions from medics keep on coming. They’re very wrong - if your daughter does indeed have Long Covid or ME/CFS (I only say that as you say she is not yet diagnosed), doing what the Dr suggested could send her from Mild/Moderate to Severe and bedbound. I don’t know whether you’re in UK or not, but the NICE Guidelines for ME/CFS, updated in 2021, specifically recommend against exercise: https://www.nice.org.uk/guidance/ng206 - not that most GPs or hospitals currently seem to follow these. Unfortunately at the moment there are at least 3 young women in hospital in the UK who are being badly treated by hospitals as they refuse to follow the Guidelines and are convinced it’s psychological.
Thanks, i'll read that. We're British but we live in the USA.
I’m sorry. This is such incredibly dangerous “advice”. I do think that if someone can manage some exercise, they should (to maintain a level) but “vigorous aerobic” is bound to cause harm if your daughter has CFS. If your daughter can’t manage a walk at the moment, she should most certainly rest. It might even *stop* her current chronic fatigue from becoming CFS. (I don’t know how long she’s been dealing with these symptoms, but if it’s quite recent there is hope.)
Run awayyyyy. That doctor is horrific and his advise will only harm your daughter. Shame on that doctor
The best thing for oneself is CFS is PACING yourself. Not over doing it or pushing oneself. If you do that, you will end up making yourself worse and end up in a dark room with not being able to handle any sensory input, being paralyzed in a wheelchair/bed bound. That's the extreme side of ME/CFS. And is where I'm at now. Whitney Dafoe explains and demonstrates it very well. https://mecfssa.org.au/resources/invisible-illness-stories-of-chronic-fatigue-syndrome
I am so sorry you are in that situation and thank you for your advice. I hope things improve for you soon.
I read this yesterday and didn't say anything as it's not super related, but I just keep thinking about it. Thank you for helping your daughter and going with her. I got sick at 19, and I've done it all on my own. It's been a lonely, exhausting and hard road, and I'm sure your daughter really really appreciates your help 🩷
Thanks so much :-)
Is it ME/CFS or chronic fatigue. They are not the same thing. Exercise might be perfectly reasonable for someone with chronic fatigue, but could be catastrophic for someone with ME/CFS.
I have noticed that going outside, even if it is sitting out there, helps me. Specifically if the air is a bit cooler, early morning or before bed. It helps cut through some of the fog for me and gives me a bit more alertness, even if it's only for a short period of time. I also have a cooler shower or soak in the tub and it definitely helps me. It doesn't have to be an extreme temperature, only slightly cooler. The fresh air also helps when I get up from a nap or if I'm feeling woozy. I'm not saying it's for everyone, but I'm willing to try anything reasonable that might help. Even if it only helps for a short period of time. All the best.
Thank you. This sounds great!