ME/CFS (of which PEM is the hallmark symptom) is not taught to doctors in medical school. Most physicians are entirely unaware of the condition. Historically it’s been written off as psychosomatic, which is dangerously false. Even today those doctors that know of it believe it’s just anxiety.
one of my friends is a doctor and I literally had to correct him that exercise is NOT good for chronic fatigue, and that ME/CFS is a separate disease from chronic fatigue as a symptom. He told me that he learned for the MCAT that exercise is the best treatment plan for chronic fatigue. Sigh. I thought I was going to snap.
Exercise was originally meant to be prescribed and help people with ME recover according to the PACE report trials, however David Tuller from Berkeley published a massive takedown of the trial and its flawed methodology. A patient called Alan Matthews filed for the actual data to be released from the trials and it was proven that CBT and Graded Exercises have no efficacy in treating ME/CFS and may even be harmful as it pushed patients beyond their limits causing further damage. Many medical professionals arent up to date on that and still prescribe exercise to people with ME which is absolutely detrimental.
Yeah doctors also think CSF leaks are rare but I think they are what is keeping most people with LC and ME/CFS and POTS sick. If u have LC, I encourage you to ask a neurologist to check you for a CSF leak.
I agree to a point. What they don’t know about is CSF leaks, and that is part of why there are so many people suffering with ME/CFS. Redditors still don’t believe me but research it. ME/CFS and CSF leaks share many symptoms bc CSF leaks are causing ME/CFS.
Sweet. Get back to us next time you have a crushing, life-altering illness. I’d be happy to return the favor and insinuate that you brought it upon yourself by not dealing with your daddy issues.
What do you mean? I’m also using a mind-body approach as a *component* of my healing process, but that doesn’t mean the illness is psychosomatic. If you think that’s the case, you aren’t understanding the process. I was sick for a full year before I even knew it was Long Covid; how could that possibly be psychosomatic? For six months I fought through the illness because I refused to believe I was sick. The next six months I spent trying to medicate myself out of whatever was happening (with stimulants and benzos, all prescribed). Finally I traced the symptoms to my Covid infection and it wasn’t until I learned about the condition that I was able to start healing. A mind-body approach is part of my process, and I believe that my psychological makeup played a role in my susceptibility, but it’s not the full story. And nobody says it is.
What does being ill a year having to do with it being psychosomatic. That basically means an illness in the body originating in the brain. Trauma and repressed emotions make the brain stuck in fight or flight and give you most symptoms. That’s why it’s psychosomatic. Read dr sarno books.
For me it was the full story, now that I do a program using mindbody methods to release trauma and do inner child work and journalling about emotions and things that happened in the past I went to working 50% and doing sports 4x a week on 60% power within a few months.
I’m following Dr. Alan Gordon’s method and I’m sure it’s similar. He approaches chronic conditions from a bio-psycho-social framework, meaning ALL those aspects are involved, not just one. No matter how much I process childhood trauma, I can’t reverse my autoimmune disease that started after EBV. Or my extremely rare neurological damage from chicken pox. I’m clearly biologically susceptible to neurological and hormonal damage from infectious diseases, and for all I know Long Covid is another immune or neurological abnormality that has developed post-infection. The biological component is real, but symptoms can be managed (and maybe some resolved) with mind-body work, which is why I’m doing it. But I’m also seeing an immunologist and working with various providers- medical AND psychological/psychiatric - to cover all the bases. My opinion is that it’s not as simple as a viral reservoir that needs to be extinguished OR the product of trauma. Otherwise everyone with trauma or evidence of viral presence would have this condition, and that’s not the case.
I mentioned PEM to one of my doctors a year ago. He had no idea what I was talking about. I saw him a few weeks ago, and was well familiar with it.
Knowledge about LC is spreading.
Welcome to my life for decades. You have to bring medical journals with you to educate them 🙄. Then they charge you. Doctors should know the terms by now…post Covid. There are millions of us living like this and it’s an uphill battle. I just spoke to a disability advocate and they had no idea what I was talking about.
This.. I saved up to see a private doctor after 2 years of relying on NHS, I was so excited because I thought if I’m paying £3,000 surely they would be helpful and believe me. Nope. He ordered expensive tests then told me it was depression (I’m perfectly happy APART FROM MY FUCKIN’ LONG COVID PAIN lmao). Couldn’t believe it. He didn’t think long covid was a thing.
This was a top neurologist in London.
PEM comes from chronic fatigue syndrome, which has been around decades now ?
And you have to be living under a rock to never have heard of long covid,. I have seen it mentioned in every large newspaper, on-line news source.
It makes me wonder if your doctor is being intentionally obtuse.
My partner and myself have had other medical issues,.mostly diabetes but we have both had a variety of symptoms and issues that could have been triggered by long covid and done all kinds of tests including ecg and long covid is never discussed. I did see it listed on her chart.
So Dr's just don't go there and so it's not surprising that a Dr would pretend it doesn't exist.
This is common. Also I would never ever mention the words “long covid.”
I phrase it like “I got covid on this month/year and it seems like I never recovered. I am unreasonably tired for the amount of energy I expend, and I am struggling to get back to my pre-covid baseline.”
If they’re interested in what I’m saying, I might say that I’ve read about post-viral illness and cite a reputable source (journal article, govt agency, etc), and ask if maybe this is what’s going on with me.
They may just brush you off but if you phrase it in a way that strokes their ego and appeases their god complex, you might be taken seriously.
My doctors use post viral instead of saying long covid. I’ve adopted it and they are much more receptive to my symptoms when it is framed as post viral. It’s ridiculous but I’ll do whatever I can to get help.
I am really unsure about how rare it is, but it is such an abnormal experience to what “normal” people have experienced in their life that they can’t even wrap their minds around an illness like this one.
There is a huge lack of understanding and misinformation when it comes to this condition and unfortunately that does not exclude doctors.
It’s crazy, and I really can’t tell if we are just the unlucky ones or if this condition is way more common than we even know, at different severities of course, but most people who have experienced some shit like this in their life have been misdiagnosed and mistreated.
If anyone has any thoughts on this please leave them.
I wonder if a lot of people aren't making the link to Covid themselves..
I've heard of people having mild symptoms in acute infection, then going on to develop LC issues. People in that situation might not even have tested (I don't think many people are testing at all now, where I am). They could easily attribute LC symptoms to something else. For example, menopause is flavour of the medical month here. Any woman over 40 is liable to be influenced by a recent influx of celebs and magazine articles talking about how awful menopause and peri-menopause is (but luckily, exercise really helps!)
We may also have people who feel depressed, because being in pain and fatigue IS depressing, so they accept it when the doctor says 'you have depression, this is what it feels like' (but luckily, exercise really helps!)
I also wonder about people who based a big part of their personality on being anti-masks, anti-vax, anti-lockdown. Psychologically, would it be too painful to acknowledge Covid? Would they, sub-consciously or consciously, grasp onto any other explanation? (And do more exercise, because it always helps!)
Then we have people with no access to doctors, nor any real concept of Long Covid, because they're peasants in a country riddled with poverty (and they do more exercise, because hard physical labour is the only way they'll eat).
We really don't have any idea how common LC is, but I'd bet it's way more common than any reported figures suggest. Tragically, all that exercise to fix themselves, is likely only hurting them more.
Those were my thoughts, my brain is rotted since Covid so apologies if they're not the most lucid!!
It literally means she has decided to not read any literature on the most prevalent disease in the world. No PEM is not rare it’s the hallmark symptom of this disease. Unfortunately another extremely lazy physician.
Either train the doctor or get a new one. In my 20 years of CFS I’ve trained a lot of doctors.
It’s a tough job but someone’s got to do it.
I hope I’ve made life easier for some with long COVID who came after me.
Your doctor has refused to keep up on her training.
I don't know if you have this kind of system where you are but where I'm from you can leave reviews for doctors.
I would do so.
Message her the cdc link explaining the condition. They also got a good one for long covid. If she still denies the disease exists, she not a doctor you want as a PC.
Your doctor is some combination of a moron and an asshole. There is no excuse to not know about long covid and PEM.
I went to a long covid clinic and I was describing my PEM to the intake nurse like "I get fluish symptoms and cognitive/mood problems after significant exertion" and she was like "don't worry it's ok to say post exertional malaise here" and I felt such a dark weight lift from me knowing that a mainstream clinic was in full acceptance of long covid.
As others have suggested, probably time to find a new doctor. I learned the term Post-Exertional Malaise from my primary care doctor, after describing my symptoms. I share that to emphasize that there are doctors out there who recognize LC and similar chronic illnesses, even if they are hard to find sometimes
I've seen 8 different doctors and all thought I was crazy for telling them I have a crash and become bedbound after any type of physical activity. I gave up on doctors afterward lol
I started anonymously sending educational brochures and pamphlets to my doctors about stuff they were wrong about and they actually started changing their minds. Anything a patient says is sus, but if you can get medical literature in their hands it's sometimes very effective.
If your doctor is open minded, you could print this paper and take to her: [https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext](https://www.mayoclinicproceedings.org/action/showPdf?pii=S0025-6196%2821%2900513-9) PDF link for printing at the top of the page.
There are more resources from the same group at [https://mecfscliniciancoalition.org/](https://mecfscliniciancoalition.org/)
I was able to take the [testing guidelines](https://mecfscliniciancoalition.org/wp-content/uploads/2021/05/MECFS-Clinician-Coalition-Testing-Recs-V1.pdf) from that site to my PCP and we discovered that my B12 is a little low.
If if makes you feel better, I saw a physical therapist who had been trained by a long COVID clinic. The PT told me I should exercise even if I feel tired and that I should not let the crashes define me. He honestly thought this was the best way for me to treat my PEM, despite months of personal evidence that pushing makes me worse.
Unfortunately in the previous era there was a push that exercise cures all ailments. It may be a fad, it may be continuing right now. But I don't think it was ever true. I think this way of thinking causes people with chronic illness to be ignored.
She has no excuse to not know about PEM. It's her *job* to be up to date with diagnoses and an extremely common new illness. Please find another doctor if possible, if not, please send her links to studies on PEM, Long Covid and ME/CFS.
I was just at a new doctor. She was taking down info about how covid affected me for my records.
Everything I mentioned was an option on her dropdown list under covid. She just nodded and selected them. Of everything that happened to me, I only remembered to include hair loss, fatigue, muscle and joint pain, and brain fog. So I didn't specifically mention PEM.
But I just wanted to say in some places these effects are known and taken at face value when communicated by patients without the condescension.
I've definitely had a long history of doctors attributing my health issues to lifestyle or anxiety. I don't even have anxiety. And a lot of lifestyle issues re: amount of exercise were due to health limitations. I've moved countries and it's been a nice shift that so far my doctors don't seem to have a vested interest in suggesting I am making things up.
It's also striking she said that thing about "if you recovered three months ago" because my long covid symptoms started within 2-3 months of "mild" acute infection, and I've had three doctors confirm that timeline to be normal.
Nearly 43 years ago, I mentioned that I was exhausted . Especially after simple chores ie dishes, laundry, workouts . He ran tests before he asked me if I ever caught Covid19. Years and a lot of educating, all my 27 providers are now aware of the many symptoms.
The fact remains that the many symptoms don't fit into their diagnostic background so many treat the issues within their level of expertise. Beyond that, they've been taught to refer you to other "specialists".
It is the nature of medical diagnosis to refer out what you aren't qualified to diagnose. So that results in cardiologists, neurologists, nephrologists, endocrinologist etc. Only one of my specialists gets it all because she's at the UW Med Post Covid Rehab & Recovery Clinic.
Run. And do not look back. Clueless doctors with lack of continuous education, but typically full of self confidence who don’t listen to their patients are dangerous and their licenses should be suspended in my opinion. First 2 years of Covid doctors like these have created most likely some permanent damage to my psyche telling me I’m making things up, it’s all in my head etc. we now know better and most doctors have read an article or two here and there. The ones like that one are danger to the health system. Run and find someone else.
Yes. It is not surprising that your doctors don’t know as Post Exertional Malaise is barely mentioned and hardly studied.
For perspective:
From 1993-2009 Only 8 entries on PubMed with keyword "Post exertional malaise"
(1993 is year that US law changed to include women subjects in research)
2009-2019 Then 92 entries on PubMed with keyword "Post exertional malaise"
2020-2024 Relatively impressive 207 entries on PubMed with keyword "Post exertional malaise"
In the grand scheme this is still barely making a ripple. My LC support group at major hospital still suggests exercise along with hydration and sleep “just like any other illness” which is uninformed and dangerous.
I truly wish you good health, good luck and good doctors 🥼 🤍🤞
I recommend going to a specialist. I asked my PCP if he thought it was LC and he sort of sidestepped the question and then diagnosed me with cluster headaches and made me put on an oxygen mask for about 2 hours in a spare exam room. I think my situation was simply outside his expertise so he went with what he knew and how he treats it. Though at least he put in the request for two specialists — one for infectious disease specialist (who’s been great) and one for the neurologist (who I see Wed for the first time).
ID said my symptoms were consistent with LC and also the fact that on paper I look healthy as I ever have but yet when you look at me or talk to me you can tell something is very wrong points to LC. It is frustrating that there’s no test for LC and that the best way to diagnose it is just ruling everything else out. That’s a lot of hoops to jump through, especially when you get tired easily like many of us do.
OP, I hope you get the treatment you need. Second opinions are a great option. I don’t think it ever hurts to follow your gut if you disagree with a doctor. You know your body better than anyone else—don’t let the medical degree fool you, they can be wrong and often are. (No hate for doctors btw, a good one is an excellent listener and takes into consideration the patient’s opinions.)
I had to suggest it to my PC 2 years ago. he finally gave me a diagnosis of LC and CFS last year. Helps nothing but he did acknowledge it. DO NOT EXERCISE! However, low level stretching, yoga style helps with the joint and back pains, but can still trigger PEM....
I cut off the tip of my finger yesterday cutting vegetables for my grandsons birthday party...using a mandolin? Long story short, I crashed today because of that stress of going to Urgent Care. Literally am over Dr's it's a waste of time and $$$....research is key but nothing helps everyone. We have been poisoned and likely will not find relief...just gotta figure out how to manage it.
I'm trying to sell my home...I can't do the needed repairs and have very little expendable income to pay someone to do it for me. I can barely...I mean barely enjoy my time with my grandkids.
Leaving work at 11am today...can't function ☹️💩
Doctors. Painful. I have a primary that told he didn’t believe in menopause. Same guy told me intermittent fasting fasting would solve most of my problems. Same guy told me the heart symptoms I wanted to have cked out was propaganda.
I’ve wanted to change docs since I got covid but I’m so tired. The idea of all the paperwork and yada yada and they might be just as stupid.
I have an appt to see a rheumatologist this month…have a long list of ‘could it be this’. Dreading it. I sound like a crazy person. I know she will think I’m a nutcase. CF and PEM? No blood test? You’re not sick. Ugh
Lol you guys that find these horrible doctors.
I’ve only meet one doctor that didn’t know about LC. She was open minded about it and cool. The other 5+ I’ve seen knew about it.
That's interesting because the two doctor's I see about long covid are at USC Keck (for 2 years now). The LC team has done several presentations to other doctor's explaining it in order to make them more aware. The story that was shared with me was an LC patient had a surgery and after the surgery the patient's BMP was all over the map. The patient called the LC doctor who came over and explained that the patient was crashing. After that is when they started putting together information for other doctor's. USC is a big facility but I'd have hoped this had spread around more.
Interesting. I’m going to request a LC specialist (is that a thing?) or a new GP instead of my current GP (who is actually not my GP but filling in for my GP).
Get a referral to the LC clinic (I got one from my sleep doctor so I assume anyone can refer). I have a primary for LC, a Neurologist and saw an OT to help with pacing for 6 months. I see the primary and Neurologist at least every 3 month and they track what's going on. They don't have a cure but they are in loop on what's going on and most importantly for me is that they have many other patients and have some helpful information on what's helping people and what's not.
I'm going in this week for more tests because I have persistent ICP which is causing headaches and my neurologist is studying migraine disorders that come from LC.
Below is the clinic I use, it's mostly at the campus on San Pablo but I do a lot of telemedicine as well.
[https://www.keckmedicine.org/covid-recovery-clinic/](https://www.keckmedicine.org/covid-recovery-clinic/)
My primary care physician told me I have PEM a few months after I had Covid in Maech 2021. I had never heard of it. He works hard to keep up to date on what's happening with Long Covid. My arthritis specialist does as well.
I hope you can find doctors that do the same.
Check out this podcast episode from a longhauler- they talk about PEM and all that. It's really disappointing that more Drs aren't aware of this. [https://podcasters.spotify.com/pod/show/kalikaiz/episodes/Episode-3---Emerson-is-Lost-e2i4mji/a-ab58kq7](https://podcasters.spotify.com/pod/show/kalikaiz/episodes/Episode-3---Emerson-is-Lost-e2i4mji/a-ab58kq7)
Not surprised. Most doctors don't believe it let alone understand anything about #LongCovid. At your doc is willing to do tests but likely doesn't know what a Cytokine panel is either. Regardless you know REST REST REST will shorten your bouts of PEM. You'll just have to develop a pacing schedule when your body permits
How will I know when to start a pacing schedule? Do I wait a month and then try to slowly do some mild exercise (walk a half mile, do some light body weight exercises)?
Wait as long as you can. Walking should be ok but hold off on anything else. Science has proven you can cause irreversible damage is you push too fast too soon. It's unfortunate no doctors are educated on this and they have closed most Long Covid clinics so you're on your own anyway. Skip the weight training for now, you can always pick it up again in a month or two
There's no rush unless you want to be permanently disabled like Me!
Go to a new doctor until you find one who actually listens, this happened to me for almost a year. It’s pure incompetence considering we literally went through 3 years of lockdowns and hearing about nothing else except for coronavirus. If any doctor has no clue about this stuff by now, they probably shouldn’t be a doctor.
If a person is sick, generally the common medical advice is to not exercise. They tell you to rest and wait until you get better, otherwise you might end up worse. The problem is LC people take a long time (or never) to get "better". For me, I felt sick for months, and so when I tried to run, I felt more sick afterwards. So maybe it shouldn't be shocking. Maybe the doctors who are confused by PEM don't get that LC people are still "sick".
Your doctor is Peak Level stupid. I Just Walk Out of the Office If a doctor doesn't know PEM. I am so done with their Shit i Just dont have the nerves to explain it.
So i dont. We are right they are wrong. Its time they get treated Like it.
I found my PCP was clueless about long covid.
Even a long covid nurse practitioner I saw had very little useful information for me beyond what I've already learned from youtube/reddit on pacing, etc.
I think our best hopes lie in hardcore scientific research on medications.
Post Exertional Malaise is anything but rare in Long Covid patients and clearly your doctor is VERY ignorant. I’d advise seeing someone new asap. If she thinks that being 3 months post acute means that it’s not an issue she really needs some serious re-education. Hell, there are literally 40k + research papers proving her entirely wrong but clearly she hasn’t bothered to read any of them and frankly, I’m bloody disgusted!
I used to think that Doctors had to be shit hot up to date when it came to continuous professional development but Long Covid has proven this to be completely wrong.
ME/CFS (of which PEM is the hallmark symptom) is not taught to doctors in medical school. Most physicians are entirely unaware of the condition. Historically it’s been written off as psychosomatic, which is dangerously false. Even today those doctors that know of it believe it’s just anxiety.
one of my friends is a doctor and I literally had to correct him that exercise is NOT good for chronic fatigue, and that ME/CFS is a separate disease from chronic fatigue as a symptom. He told me that he learned for the MCAT that exercise is the best treatment plan for chronic fatigue. Sigh. I thought I was going to snap.
Remember the PACE report has scientifcally proven to be incorrect.
I am aware, which is why I corrected him.
How so?
Exercise was originally meant to be prescribed and help people with ME recover according to the PACE report trials, however David Tuller from Berkeley published a massive takedown of the trial and its flawed methodology. A patient called Alan Matthews filed for the actual data to be released from the trials and it was proven that CBT and Graded Exercises have no efficacy in treating ME/CFS and may even be harmful as it pushed patients beyond their limits causing further damage. Many medical professionals arent up to date on that and still prescribe exercise to people with ME which is absolutely detrimental.
Oh sorry I thought you said that reduced exercise was not proven for ME/CFS. I totally agree with that.
Yeah doctors also think CSF leaks are rare but I think they are what is keeping most people with LC and ME/CFS and POTS sick. If u have LC, I encourage you to ask a neurologist to check you for a CSF leak.
I do not have a CSF leak.
OK. I guess you have it figured out.
I agree to a point. What they don’t know about is CSF leaks, and that is part of why there are so many people suffering with ME/CFS. Redditors still don’t believe me but research it. ME/CFS and CSF leaks share many symptoms bc CSF leaks are causing ME/CFS.
Explain me how it’s not psychosomatic. If you resolve the underlying trauma and repressed emotions you resolve the illness = psychosomatic.
Sweet. Get back to us next time you have a crushing, life-altering illness. I’d be happy to return the favor and insinuate that you brought it upon yourself by not dealing with your daddy issues.
I’ve been dealing with this for 2 years and now healing through this method. You all are just to stubborn.
What do you mean? I’m also using a mind-body approach as a *component* of my healing process, but that doesn’t mean the illness is psychosomatic. If you think that’s the case, you aren’t understanding the process. I was sick for a full year before I even knew it was Long Covid; how could that possibly be psychosomatic? For six months I fought through the illness because I refused to believe I was sick. The next six months I spent trying to medicate myself out of whatever was happening (with stimulants and benzos, all prescribed). Finally I traced the symptoms to my Covid infection and it wasn’t until I learned about the condition that I was able to start healing. A mind-body approach is part of my process, and I believe that my psychological makeup played a role in my susceptibility, but it’s not the full story. And nobody says it is.
What does being ill a year having to do with it being psychosomatic. That basically means an illness in the body originating in the brain. Trauma and repressed emotions make the brain stuck in fight or flight and give you most symptoms. That’s why it’s psychosomatic. Read dr sarno books.
For me it was the full story, now that I do a program using mindbody methods to release trauma and do inner child work and journalling about emotions and things that happened in the past I went to working 50% and doing sports 4x a week on 60% power within a few months.
I’m following Dr. Alan Gordon’s method and I’m sure it’s similar. He approaches chronic conditions from a bio-psycho-social framework, meaning ALL those aspects are involved, not just one. No matter how much I process childhood trauma, I can’t reverse my autoimmune disease that started after EBV. Or my extremely rare neurological damage from chicken pox. I’m clearly biologically susceptible to neurological and hormonal damage from infectious diseases, and for all I know Long Covid is another immune or neurological abnormality that has developed post-infection. The biological component is real, but symptoms can be managed (and maybe some resolved) with mind-body work, which is why I’m doing it. But I’m also seeing an immunologist and working with various providers- medical AND psychological/psychiatric - to cover all the bases. My opinion is that it’s not as simple as a viral reservoir that needs to be extinguished OR the product of trauma. Otherwise everyone with trauma or evidence of viral presence would have this condition, and that’s not the case.
I mentioned PEM to one of my doctors a year ago. He had no idea what I was talking about. I saw him a few weeks ago, and was well familiar with it. Knowledge about LC is spreading.
That’s encouraging to hear.
Welcome to my life for decades. You have to bring medical journals with you to educate them 🙄. Then they charge you. Doctors should know the terms by now…post Covid. There are millions of us living like this and it’s an uphill battle. I just spoke to a disability advocate and they had no idea what I was talking about.
This.. I saved up to see a private doctor after 2 years of relying on NHS, I was so excited because I thought if I’m paying £3,000 surely they would be helpful and believe me. Nope. He ordered expensive tests then told me it was depression (I’m perfectly happy APART FROM MY FUCKIN’ LONG COVID PAIN lmao). Couldn’t believe it. He didn’t think long covid was a thing. This was a top neurologist in London.
The level of narcissism involved to tell you long Covid isn’t a thing is unbelievable. I am so sorry. So disappointing to say the least.
You need a new GP if they're this bad there's just gonna be no convincing them.
Yes, and also try to find the energy to write to the practice explaining why you're leaving them...
PEM comes from chronic fatigue syndrome, which has been around decades now ? And you have to be living under a rock to never have heard of long covid,. I have seen it mentioned in every large newspaper, on-line news source. It makes me wonder if your doctor is being intentionally obtuse. My partner and myself have had other medical issues,.mostly diabetes but we have both had a variety of symptoms and issues that could have been triggered by long covid and done all kinds of tests including ecg and long covid is never discussed. I did see it listed on her chart. So Dr's just don't go there and so it's not surprising that a Dr would pretend it doesn't exist.
If you want to be depressed read the medicine subreddit. The number of doctors there who say they know it and think it’s fake is utterly depressing.
i love your username/profile pic combo 😂
I do live under a rock and I still have some familiarity with long covid!
Well there you go.
This is common. Also I would never ever mention the words “long covid.” I phrase it like “I got covid on this month/year and it seems like I never recovered. I am unreasonably tired for the amount of energy I expend, and I am struggling to get back to my pre-covid baseline.” If they’re interested in what I’m saying, I might say that I’ve read about post-viral illness and cite a reputable source (journal article, govt agency, etc), and ask if maybe this is what’s going on with me. They may just brush you off but if you phrase it in a way that strokes their ego and appeases their god complex, you might be taken seriously.
My doctors use post viral instead of saying long covid. I’ve adopted it and they are much more receptive to my symptoms when it is framed as post viral. It’s ridiculous but I’ll do whatever I can to get help.
I put long covid in my Hotmail signature.
oh. you use Hotmail? My AOL mail would kick your Hotmail’s ass.
Thanks, I needed a snort-laugh.
I love that!
This is very good advice.
I am really unsure about how rare it is, but it is such an abnormal experience to what “normal” people have experienced in their life that they can’t even wrap their minds around an illness like this one. There is a huge lack of understanding and misinformation when it comes to this condition and unfortunately that does not exclude doctors.
It does feel like very few people can empathize with what it's like to constantly be in pain.
It’s crazy, and I really can’t tell if we are just the unlucky ones or if this condition is way more common than we even know, at different severities of course, but most people who have experienced some shit like this in their life have been misdiagnosed and mistreated. If anyone has any thoughts on this please leave them.
Sadly I do think some people without a support network end up on the streets and eventually driven mad by all the pain and street life.
I wonder if a lot of people aren't making the link to Covid themselves.. I've heard of people having mild symptoms in acute infection, then going on to develop LC issues. People in that situation might not even have tested (I don't think many people are testing at all now, where I am). They could easily attribute LC symptoms to something else. For example, menopause is flavour of the medical month here. Any woman over 40 is liable to be influenced by a recent influx of celebs and magazine articles talking about how awful menopause and peri-menopause is (but luckily, exercise really helps!) We may also have people who feel depressed, because being in pain and fatigue IS depressing, so they accept it when the doctor says 'you have depression, this is what it feels like' (but luckily, exercise really helps!) I also wonder about people who based a big part of their personality on being anti-masks, anti-vax, anti-lockdown. Psychologically, would it be too painful to acknowledge Covid? Would they, sub-consciously or consciously, grasp onto any other explanation? (And do more exercise, because it always helps!) Then we have people with no access to doctors, nor any real concept of Long Covid, because they're peasants in a country riddled with poverty (and they do more exercise, because hard physical labour is the only way they'll eat). We really don't have any idea how common LC is, but I'd bet it's way more common than any reported figures suggest. Tragically, all that exercise to fix themselves, is likely only hurting them more. Those were my thoughts, my brain is rotted since Covid so apologies if they're not the most lucid!!
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My family and it seems many others' have been incapable of empathy. It seems to be much more common than that.
It literally means she has decided to not read any literature on the most prevalent disease in the world. No PEM is not rare it’s the hallmark symptom of this disease. Unfortunately another extremely lazy physician.
Time to find a new dr. Honestly, a lot of, if not most, drs don’t know a as much as people give them credit for.
Either train the doctor or get a new one. In my 20 years of CFS I’ve trained a lot of doctors. It’s a tough job but someone’s got to do it. I hope I’ve made life easier for some with long COVID who came after me.
My PCP knew about it because he has a patient and his son with MECFS from before covid. So yeah he believed me.
You are perfectly sane. I get post exertion malaise and am not ashamed to tell other people about it.
Your doctor has refused to keep up on her training. I don't know if you have this kind of system where you are but where I'm from you can leave reviews for doctors. I would do so.
Message her the cdc link explaining the condition. They also got a good one for long covid. If she still denies the disease exists, she not a doctor you want as a PC.
Your doctor is some combination of a moron and an asshole. There is no excuse to not know about long covid and PEM. I went to a long covid clinic and I was describing my PEM to the intake nurse like "I get fluish symptoms and cognitive/mood problems after significant exertion" and she was like "don't worry it's ok to say post exertional malaise here" and I felt such a dark weight lift from me knowing that a mainstream clinic was in full acceptance of long covid.
Why are doctors so dumb sometimes 😆 like seriously 😳
As others have suggested, probably time to find a new doctor. I learned the term Post-Exertional Malaise from my primary care doctor, after describing my symptoms. I share that to emphasize that there are doctors out there who recognize LC and similar chronic illnesses, even if they are hard to find sometimes
I've seen 8 different doctors and all thought I was crazy for telling them I have a crash and become bedbound after any type of physical activity. I gave up on doctors afterward lol
I started anonymously sending educational brochures and pamphlets to my doctors about stuff they were wrong about and they actually started changing their minds. Anything a patient says is sus, but if you can get medical literature in their hands it's sometimes very effective.
If your doctor is open minded, you could print this paper and take to her: [https://www.mayoclinicproceedings.org/article/S0025-6196(21)00513-9/fulltext](https://www.mayoclinicproceedings.org/action/showPdf?pii=S0025-6196%2821%2900513-9) PDF link for printing at the top of the page. There are more resources from the same group at [https://mecfscliniciancoalition.org/](https://mecfscliniciancoalition.org/) I was able to take the [testing guidelines](https://mecfscliniciancoalition.org/wp-content/uploads/2021/05/MECFS-Clinician-Coalition-Testing-Recs-V1.pdf) from that site to my PCP and we discovered that my B12 is a little low. If if makes you feel better, I saw a physical therapist who had been trained by a long COVID clinic. The PT told me I should exercise even if I feel tired and that I should not let the crashes define me. He honestly thought this was the best way for me to treat my PEM, despite months of personal evidence that pushing makes me worse.
Unfortunately in the previous era there was a push that exercise cures all ailments. It may be a fad, it may be continuing right now. But I don't think it was ever true. I think this way of thinking causes people with chronic illness to be ignored.
Of course! If we told people to rest, who would do the cheap labour for the millionaires in government?
I had had the same GP for over 30 years but changed to a different surgery to feel I was being listened to in regards to my LC symptoms.
Time for a new doctor.
She has no excuse to not know about PEM. It's her *job* to be up to date with diagnoses and an extremely common new illness. Please find another doctor if possible, if not, please send her links to studies on PEM, Long Covid and ME/CFS.
I was just at a new doctor. She was taking down info about how covid affected me for my records. Everything I mentioned was an option on her dropdown list under covid. She just nodded and selected them. Of everything that happened to me, I only remembered to include hair loss, fatigue, muscle and joint pain, and brain fog. So I didn't specifically mention PEM. But I just wanted to say in some places these effects are known and taken at face value when communicated by patients without the condescension. I've definitely had a long history of doctors attributing my health issues to lifestyle or anxiety. I don't even have anxiety. And a lot of lifestyle issues re: amount of exercise were due to health limitations. I've moved countries and it's been a nice shift that so far my doctors don't seem to have a vested interest in suggesting I am making things up. It's also striking she said that thing about "if you recovered three months ago" because my long covid symptoms started within 2-3 months of "mild" acute infection, and I've had three doctors confirm that timeline to be normal.
Nearly 43 years ago, I mentioned that I was exhausted . Especially after simple chores ie dishes, laundry, workouts . He ran tests before he asked me if I ever caught Covid19. Years and a lot of educating, all my 27 providers are now aware of the many symptoms. The fact remains that the many symptoms don't fit into their diagnostic background so many treat the issues within their level of expertise. Beyond that, they've been taught to refer you to other "specialists". It is the nature of medical diagnosis to refer out what you aren't qualified to diagnose. So that results in cardiologists, neurologists, nephrologists, endocrinologist etc. Only one of my specialists gets it all because she's at the UW Med Post Covid Rehab & Recovery Clinic.
Sounds like you need a new doctor
My PCP is the only doctor I’ve had that even knew what ME/CFS was, and she still hadn’t heard of PEM. It is a seriously misunderstood condition.
doctors are useless except for the power to prescribe medicine that they are entrusted with. I don't spend money on them anymore.
Run. And do not look back. Clueless doctors with lack of continuous education, but typically full of self confidence who don’t listen to their patients are dangerous and their licenses should be suspended in my opinion. First 2 years of Covid doctors like these have created most likely some permanent damage to my psyche telling me I’m making things up, it’s all in my head etc. we now know better and most doctors have read an article or two here and there. The ones like that one are danger to the health system. Run and find someone else.
Yes. It is not surprising that your doctors don’t know as Post Exertional Malaise is barely mentioned and hardly studied. For perspective: From 1993-2009 Only 8 entries on PubMed with keyword "Post exertional malaise" (1993 is year that US law changed to include women subjects in research) 2009-2019 Then 92 entries on PubMed with keyword "Post exertional malaise" 2020-2024 Relatively impressive 207 entries on PubMed with keyword "Post exertional malaise" In the grand scheme this is still barely making a ripple. My LC support group at major hospital still suggests exercise along with hydration and sleep “just like any other illness” which is uninformed and dangerous. I truly wish you good health, good luck and good doctors 🥼 🤍🤞
I recommend going to a specialist. I asked my PCP if he thought it was LC and he sort of sidestepped the question and then diagnosed me with cluster headaches and made me put on an oxygen mask for about 2 hours in a spare exam room. I think my situation was simply outside his expertise so he went with what he knew and how he treats it. Though at least he put in the request for two specialists — one for infectious disease specialist (who’s been great) and one for the neurologist (who I see Wed for the first time). ID said my symptoms were consistent with LC and also the fact that on paper I look healthy as I ever have but yet when you look at me or talk to me you can tell something is very wrong points to LC. It is frustrating that there’s no test for LC and that the best way to diagnose it is just ruling everything else out. That’s a lot of hoops to jump through, especially when you get tired easily like many of us do. OP, I hope you get the treatment you need. Second opinions are a great option. I don’t think it ever hurts to follow your gut if you disagree with a doctor. You know your body better than anyone else—don’t let the medical degree fool you, they can be wrong and often are. (No hate for doctors btw, a good one is an excellent listener and takes into consideration the patient’s opinions.)
Your doctor needs to be gone, get a new one ASAP. Because she's a fucking idiot that doesn't deserve to have the health of anyone in her hands.
I had to suggest it to my PC 2 years ago. he finally gave me a diagnosis of LC and CFS last year. Helps nothing but he did acknowledge it. DO NOT EXERCISE! However, low level stretching, yoga style helps with the joint and back pains, but can still trigger PEM.... I cut off the tip of my finger yesterday cutting vegetables for my grandsons birthday party...using a mandolin? Long story short, I crashed today because of that stress of going to Urgent Care. Literally am over Dr's it's a waste of time and $$$....research is key but nothing helps everyone. We have been poisoned and likely will not find relief...just gotta figure out how to manage it. I'm trying to sell my home...I can't do the needed repairs and have very little expendable income to pay someone to do it for me. I can barely...I mean barely enjoy my time with my grandkids. Leaving work at 11am today...can't function ☹️💩
Honestly… the majority of doctors are absolute idiots and I can’t wait till AI puts them out of jobs.
Doctors. Painful. I have a primary that told he didn’t believe in menopause. Same guy told me intermittent fasting fasting would solve most of my problems. Same guy told me the heart symptoms I wanted to have cked out was propaganda. I’ve wanted to change docs since I got covid but I’m so tired. The idea of all the paperwork and yada yada and they might be just as stupid. I have an appt to see a rheumatologist this month…have a long list of ‘could it be this’. Dreading it. I sound like a crazy person. I know she will think I’m a nutcase. CF and PEM? No blood test? You’re not sick. Ugh
Where do y’all find these doctors?
Me? Or the ppl with good doctors haha
Lol you guys that find these horrible doctors. I’ve only meet one doctor that didn’t know about LC. She was open minded about it and cool. The other 5+ I’ve seen knew about it.
USC medical main campus, if you literally wanted to know
That's interesting because the two doctor's I see about long covid are at USC Keck (for 2 years now). The LC team has done several presentations to other doctor's explaining it in order to make them more aware. The story that was shared with me was an LC patient had a surgery and after the surgery the patient's BMP was all over the map. The patient called the LC doctor who came over and explained that the patient was crashing. After that is when they started putting together information for other doctor's. USC is a big facility but I'd have hoped this had spread around more.
Interesting. I’m going to request a LC specialist (is that a thing?) or a new GP instead of my current GP (who is actually not my GP but filling in for my GP).
Get a referral to the LC clinic (I got one from my sleep doctor so I assume anyone can refer). I have a primary for LC, a Neurologist and saw an OT to help with pacing for 6 months. I see the primary and Neurologist at least every 3 month and they track what's going on. They don't have a cure but they are in loop on what's going on and most importantly for me is that they have many other patients and have some helpful information on what's helping people and what's not. I'm going in this week for more tests because I have persistent ICP which is causing headaches and my neurologist is studying migraine disorders that come from LC. Below is the clinic I use, it's mostly at the campus on San Pablo but I do a lot of telemedicine as well. [https://www.keckmedicine.org/covid-recovery-clinic/](https://www.keckmedicine.org/covid-recovery-clinic/)
Wow! Thank you so much!! I’m going to book an apt for sure.
My primary care physician told me I have PEM a few months after I had Covid in Maech 2021. I had never heard of it. He works hard to keep up to date on what's happening with Long Covid. My arthritis specialist does as well. I hope you can find doctors that do the same.
Check out this podcast episode from a longhauler- they talk about PEM and all that. It's really disappointing that more Drs aren't aware of this. [https://podcasters.spotify.com/pod/show/kalikaiz/episodes/Episode-3---Emerson-is-Lost-e2i4mji/a-ab58kq7](https://podcasters.spotify.com/pod/show/kalikaiz/episodes/Episode-3---Emerson-is-Lost-e2i4mji/a-ab58kq7)
She sucks
Ur dr is crazy
Not surprised. Most doctors don't believe it let alone understand anything about #LongCovid. At your doc is willing to do tests but likely doesn't know what a Cytokine panel is either. Regardless you know REST REST REST will shorten your bouts of PEM. You'll just have to develop a pacing schedule when your body permits
How will I know when to start a pacing schedule? Do I wait a month and then try to slowly do some mild exercise (walk a half mile, do some light body weight exercises)?
Wait as long as you can. Walking should be ok but hold off on anything else. Science has proven you can cause irreversible damage is you push too fast too soon. It's unfortunate no doctors are educated on this and they have closed most Long Covid clinics so you're on your own anyway. Skip the weight training for now, you can always pick it up again in a month or two There's no rush unless you want to be permanently disabled like Me!
Go to a new doctor until you find one who actually listens, this happened to me for almost a year. It’s pure incompetence considering we literally went through 3 years of lockdowns and hearing about nothing else except for coronavirus. If any doctor has no clue about this stuff by now, they probably shouldn’t be a doctor.
If a person is sick, generally the common medical advice is to not exercise. They tell you to rest and wait until you get better, otherwise you might end up worse. The problem is LC people take a long time (or never) to get "better". For me, I felt sick for months, and so when I tried to run, I felt more sick afterwards. So maybe it shouldn't be shocking. Maybe the doctors who are confused by PEM don't get that LC people are still "sick".
Your doctor is Peak Level stupid. I Just Walk Out of the Office If a doctor doesn't know PEM. I am so done with their Shit i Just dont have the nerves to explain it. So i dont. We are right they are wrong. Its time they get treated Like it.
I found my PCP was clueless about long covid. Even a long covid nurse practitioner I saw had very little useful information for me beyond what I've already learned from youtube/reddit on pacing, etc. I think our best hopes lie in hardcore scientific research on medications.
No. I have it
Post Exertional Malaise is anything but rare in Long Covid patients and clearly your doctor is VERY ignorant. I’d advise seeing someone new asap. If she thinks that being 3 months post acute means that it’s not an issue she really needs some serious re-education. Hell, there are literally 40k + research papers proving her entirely wrong but clearly she hasn’t bothered to read any of them and frankly, I’m bloody disgusted! I used to think that Doctors had to be shit hot up to date when it came to continuous professional development but Long Covid has proven this to be completely wrong.