TMW You get banned from a me/cfs subreddit for speaking on misdiagnosis and "recovery/cure" stories

[RyeRyeBread]

*Possibly controversial, just fyi*
So, I'm on a few subreddits about ME or CFS on reddit. To be honest, avoid most of them, most of the time, because a good chunk of people on there have either gone down the rabbit hole of natural treatments (only talking about herbs, spices, vitamins, etc. and nothing else) or they are talking about recovery stories.

The controversial part here is my opinion on the recovery stories, or "cured" people. Let me preface this by saying I am not claiming to be correct and maybe science will soon prove me wrong, I am open to it. That being said, I have yet to hear an actual recovery/cure story (I'm talking 80-100% better and essentially no longer sick, not just improvement) that I believed. Not that I do not believe their improvement or recovery, but that I do not believe that is the same illness that the majority of us know as "ME" (or CFS depending on your preference).

I believe the people who have these grand recoveries or found this random cures were suffering, definitely, and they they were 100% legitimately ill -- But I do not think it's the same ME that the rest of us have. I am a subscriber to the theory that there may be multiple illnesses currently shoved under the diagnoses of ME, MECFS, and CFS, and I believe these people were (unfortunately and fortunately) misdiagnosed.

So I was on this subreddit, and I came across a recovery story. Normally I'd scroll past and leave it, but this one caught my eye. I clicked, read through, and if I'm honest I immediately got offended. This woman claims she recovered by changing the way she thought about her symptoms. She changed her thoughts, basically thought more positive and acted like her symptoms were less scary than they were, and she saw a 85% recover over time. She considers herself to have *had* ME/CFS, but to now be easentially cured.

I find this not only offensive and problematic, but also harmful and sad. As I'm sure many of us know, our thoughts do not make our illness, so changing them will do nothing but help your mood. Sure, you might see a little improvement, as the psychological mind does impact our physical bodies, but it would not cure ME. So, I commented and shared that. I do not have my original comment as I was later permanently banned for (I believe, they didn't tell me outright, just that I violated one of their 3 rules) denying a person's illness.

The ban is wrongful and incorrect, as I never stated her illness was not ME, or even that it wasn't real - I only spoke about generalized ME and how other people with recovery stories were most likely misdiagnosed. I made sure not to speak specifically about her because I know people get defensive real easily over stuff like that (and I was correct, she got fiesty and then i was banned lmao), and I also didn't want to be rude while sharing a comment I hoped would reach more people than just her.

In summary, my [non-doctor/researcher] opinion is that if your ME greatly improves simply by thinking better, you do not have ME. Sounds either like placebo effect that is temporary, or that your illness has a huge psychological factor go it and should be addressed that way.

What about ya'll? Do you believe the recoveries/cures? Again, by cures I mean 100% or near to it, I have heard of and believe the semi-recoveries that happen with pacing and whatnot, but even those people aren't healthy people again, just greatly improved or mild. Do you think a person who recovers thanks to their thought processes actually has ME?

*If that woman is in these forums and sees this, I just want to take a second and apologize if I made her feel invalidated, that was not my intention.
I wish you and anyone in a similar situation good luck.

 

[hapl808]

In summary, my [non-doctor/researcher] opinion is that if your ME greatly improves simply by thinking better, you do not have ME. Sounds either like placebo effect that is temporary, or that your illness has a huge psychological factor go it and should be addressed that way.

Yep, agreed. Like you said - if something worked for her, then that's great. But maybe her problem was mental health related and personally I don't think that's connected with many ME/CFS cases (although I'm open to the possibility that it absolutely could be a major issue for some people).

I am a subscriber to the theory that there may be multiple illnesses currently shoved under the diagnoses of ME, MECFS, and CFS, and I believe these people were (unfortunately and fortunately) misdiagnosed.

Same. I've often wondered if I even have MS - so many of the symptoms overlap. For some reason my neurologists have never thought so, but I probably should've still pushed for an MRI back when I wasn't housebound. But when I wasn't housebound, I was too busy living life to the extent I could. I think the biggest mistake, no matter what the illness, was the constant encouragement from doctors (and people like this woman) to push through my symptoms. I think pushing through and too much exercise caused major and permanent declines for me - but that could apply to ME/CFS crashes or MS flares. Just different language.

Anyways, try not to let it bother you. I've been dealing with this for 25 years and to be honest, I just don't care about people like that. She'll get better through her positive thinking, or she won't and will relapse. Maybe she just has a mental illness and has figured out a way to manage it (which to be fair is more than most psychiatrists can offer). Maybe she found God and God cured her (or she made a bargain with Satan). In a selfish way, I only care if it helps me. I thought DNRS was silly, but I tried it because silly or not - I'd be fine if it helped me. Same with Medical Medium, and many other things.

The bigger concern is warning others who will follow down the rabbit hole and can't navigate it. For me, that was traditional doctors encouraging me to take a few NSAIDs or a muscle relaxer or a Valium and do some PT and push through. That and general toxic positivity permanently damaged me, so I can understand your concern.

 

[Andryr]

What about ya'll? Do you believe the recoveries/cures?

Before I say anything I need to clarify I have CFS-like symptoms not CFS (the last time I checked my symptoms I fit into any criteria but I have had PEM only 2 or 3 times).
CFS is a bunch of symptoms. We do not now what exactly are those caused by. We know triggers but not the mechanism.
I believe things are easy for those whose CFS has been triggered by stress or burnout. If their immune system is not affected (only adrenals are) it is often enough to downshift/travel/meditate for 2 or 3 month or use 'brain retraining' and voila you're back healthy again.
For those with viral onset I believe things are bad. You may meditate for decades but if your immune system can't clear the virus or it learned some anti-patterns when contacting the pathogen you may never be able to get your health back.
I am sorry you have been banned on reddit. Posts like the one you commented make CFS look as something lightweight and stupid like hysteria. And makes us look as a bunch of lazy imbeciles. Until biomarkers are found we are doomed to be frowned upon.
That is why I am so desperately looking forward to see the NIH CFS/ME study results.

 

[Wayne]

*If that woman is in these forums and sees this, I just want to take a second and apologize if I made her feel invalidated, that was not my intention. ... I wish you and anyone in a similar situation good luck.

Hi @RyeRyeBread -- Your post comes across as kind and respectful, and I'm assuming your original post to this woman was of the same tenor. To me, if someone posts respectfully, then there's really no reason to "moderate" it--just because you disagree with it, and certainly not a reason to totally ban someone from a forum.

It never feels good to be censored or banned, and I empathize with your situation. The treatment you've received should probably be grounds for the banner being banned (IMHO of course). Not that I would advocate for that, as I try to be kind and respectful as well (and hopefully tolerant).

Just know that you're welcome here on Phoenix Rising. When it comes to communicating with others with similar ME/CFS types health issues, I find this forum to be my home. Reddit can be interesting at times, but it really doesn't seem to have the sense of community that I value so much here on PR.

Take care!

 

[hapl808]

Reddit can be interesting at times, but it really doesn't seem to have the sense of community that I value so much here on PR.

Agreed - Reddit is a great resource, but it's not a community.

 

[lenora]

I've always thought that CFS/FM (now ME....what happened to FM?) is a combo of many different things in different people.

Heavens, even on here we have extreme ranges and shouldn't assume that the way we feel is the way that another reacts. I don't think healthy people choose to live this way.....I never have. In addition to our illness I've had brain surgery, and spinal CORD surgery....the latter was far worse than the brain surgery.

I'm old now, and I've been involved in this since the days of AIDS. Yes, there has been some progress, but an answer? No, I think that unfortunately will be a long time in coming. Your best chance is when you first become ill, especially if you're young. That's something I've noticed.

Even Long Haul Syndrome is being looked askance as not being real. Yours, Lenora

 

[RyeRyeBread]

Before I say anything I need to clarify I have CFS-like symptoms not CFS (the last time I checked my symptoms I fit into any criteria but I have had PEM only 2 or 3 times).
CFS is a bunch of symptoms. We do not now what exactly are those caused by. We know triggers but not the mechanism.
I believe things are easy for those whose CFS has been triggered by stress or burnout. If their immune system is not affected (only adrenals are) it is often enough to downshift/travel/meditate for 2 or 3 month or use 'brain retraining' and voila you're back healthy again.
For those with viral onset I believe things are bad. You may meditate for decades but if your immune system can't clear the virus or it learned some anti-patterns when contacting the pathogen you may never be able to get your health back.
I am sorry you have been banned on reddit. Posts like the one you commented make CFS look as something lightweight and stupid like hysteria. And makes us look as a bunch of lazy imbeciles. Until biomarkers are found we are doomed to be frowned upon.
That is why I am so desperately looking forward to see the NIH CFS/ME study results.

Thank you for your reply, and yes viral vs stress/psych onset definitely has it's differences and could play a major role in that.

I believe I mentioned similar stuff in the reddit comment, how most of the people I've seen who had these drastic recoveries were those who developed it after stress/trauma, or those who didn't seem to have immune or neurological symptoms as present as those with viral onset. I have viral onset, and have tried the whole mind over matter thing, and know very well it does not work LoL

That's one of the main reasons I commented on it instead of leaving it be, because stories like that (without a question of whether it's actually ME or not, or ones that are urging others to cure themselves by doing xyz super simple thing like positive thinking) are harmful af both to the patients but also to the image of patients. We have all tried to "think positive" or change our view of things. It doesn't fix our bodies, not when you have ME (or what we know as ME).

I am very much looking forward to biomarkers and more research so we all know for sure!

 

[RyeRyeBread]

Yep, agreed. Like you said - if something worked for her, then that's great. But maybe her problem was mental health related and personally I don't think that's connected with many ME/CFS cases (although I'm open to the possibility that it absolutely could be a major issue for some people).



Same. I've often wondered if I even have MS - so many of the symptoms overlap. For some reason my neurologists have never thought so, but I probably should've still pushed for an MRI back when I wasn't housebound. But when I wasn't housebound, I was too busy living life to the extent I could. I think the biggest mistake, no matter what the illness, was the constant encouragement from doctors (and people like this woman) to push through my symptoms. I think pushing through and too much exercise caused major and permanent declines for me - but that could apply to ME/CFS crashes or MS flares. Just different language.

Anyways, try not to let it bother you. I've been dealing with this for 25 years and to be honest, I just don't care about people like that. She'll get better through her positive thinking, or she won't and will relapse. Maybe she just has a mental illness and has figured out a way to manage it (which to be fair is more than most psychiatrists can offer). Maybe she found God and God cured her (or she made a bargain with Satan). In a selfish way, I only care if it helps me. I thought DNRS was silly, but I tried it because silly or not - I'd be fine if it helped me. Same with Medical Medium, and many other things.

The bigger concern is warning others who will follow down the rabbit hole and can't navigate it. For me, that was traditional doctors encouraging me to take a few NSAIDs or a muscle relaxer or a Valium and do some PT and push through. That and general toxic positivity permanently damaged me, so I can understand your concern.

thank you for your reply!

Also same with MS or similar, I actually intend to get to a neurologist sometime soon to double check/rule out extra stuff, or at the least have a neurologist on my team. My neuro symptoms aren't severe (I'm mild->moderate overall) but they are far from the norm when they are happening and scary as hell, so I rather figure out what (of not ME) they could be or have it documented by a neuro and maybe an MRI if there are any abnormal stuff going on up there

 

[RyeRyeBread]

Hi @RyeRyeBread -- Your post comes across as kind and respectful, and I'm assuming your original post to this woman was of the same tenor. To me, if someone posts respectfully, then there's really no reason to "moderate" it--just because you disagree with it, and certainly not a reason to totally ban someone from a forum.

It never feels good to be censored or banned, and I empathize with your situation. The treatment you've received should probably be grounds for the banner being banned (IMHO of course). Not that I would advocate for that, as I try to be kind and respectful as well (and hopefully tolerant).

Just know that you're welcome here on Phoenix Rising. When it comes to communicating with others with similar ME/CFS types health issues, I find this forum to be my home. Reddit can be interesting at times, but it really doesn't seem to have the sense of community that I value so much here on PR.

Take care!

Agreed, PR forums are a comfortable home, and reddit and elsewhere seems to be a rough motel off the side of a highway

As for my tone, I hope it came off that way as I never intended to be rude or harsh, but I am a bit afraid I may have been blunt or not-sugar-coated in the original. Either way, I can no longer comment or view my comments in the subreddit, so it is what it is I'm just happy it was a group I wasn't too fond of and not a good one

 

[wabi-sabi]

This was just the thread I needed to read today. I've been spending too much time on reddit lately (stuck in bed and too braindead to read books, so what am I going to do?) and getting upset by what I see. This is such a nice reality check.

I have to admit that I don't really ever look at MECFS reddits. They feel full of ignorance and false hope to me. I find far better info here and on HealthRising, so I try to stick to those sites for real hope and the latest gossip.

 

[hapl808]

Also same with MS or similar, I actually intend to get to a neurologist sometime soon to double check/rule out extra stuff, or at the least have a neurologist on my team. My neuro symptoms aren't severe (I'm mild->moderate overall) but they are far from the norm when they are happening and scary as hell, so I rather figure out what (of not ME) they could be or have it documented by a neuro and maybe an MRI if there are any abnormal stuff going on up there

Yeah, when I was mild-moderate, I just crashed a lot. I could do a full day of work or travel, but then needed 2-3 days to recover. I stopped being able to work out for 2 hours - first lowering to 1 hour, then 30 mins, then 20 mins, then pretty much stopped weightlifting for 10+ years (I never should have restarted). My legs always felt 'heavy' and I stopped generating endorphins after physical activity. All stuff that mostly led to shrugs.

I hope you can get a neurologist - I didn't get one until I already was having trouble walking. Even then, and even when I started using crutches - they just offered more invasive "well we can do a biopsy" without any explanation of what they would look for. Always felt like a gauntlet thrown down: if you aren't willing to do a biopsy or an LP, then it's probably not that serious. After hearing a few horror stories of CSF leaks, I'm glad I didn't do that.

I do think a brain MRI could be helpful and hope you can get one. Not that MS is that well understood or easily diagnosable, but at least it's taken a bit more seriously by doctors and people.

 

[RyeRyeBread]

Smh well apparently my comments triggered an entire announcement post! Meanwhile, never in any of my comments did I say this person didn't have ME, because again, I never addressed their illness. I never claimed to know anything about their illness and never stated anything about them in particular. I spoke about "Many people with ME/CFS who recover like this don't actually have ME, but we're misdiagnosed" and other broad statements (as an example. I spoke generally and broadly, and did not claim anything about this person in particular.)

"Unfortunately this happens often in ME forums" Are they talking about us, here? Normally this wouldn't be funny, but it's so sad and strange to me, that I am finding it humorous. You have(?) and illness that is very unknown in terms of research and causes, cures, treatments, etc. and is very commonly misdiagnosed - and yet you get angry when someone suggests that perhaps people are misdiagnosed a lot? ‍♂

I had sympathy at first, but the fact that the forum itself is built upon never questioning anything is 100% giving medical cult vibes. Big red flags for me, and now I have less regrest getting kicked out lol.
It's making it feel like those Lyme forums where every single symptom *must* be connected to Lyme, when in reality its Lyme+other illness and deficiencies all in one the majority of the time. (this of course happens in every forum to some degree for every illness, but Lyme is known for this connect the dot behavior going overboard). We have to be able to question ourselves and each other.

Here's the screenshot of the announcement lol
That person below is the person I commented with. The person/mod posting is probably the one who banned me.

 

[RyeRyeBread]

This was just the thread I needed to read today. I've been spending too much time on reddit lately (stuck in bed and too braindead to read books, so what am I going to do?) and getting upset by what I see. This is such a nice reality check.

I have to admit that I don't really ever look at MECFS reddits. They feel full of ignorance and false hope to me. I find far better info here and on HealthRising, so I try to stick to those sites for real hope and the latest gossip.

Same here, I usually avoid them on there and stick to here and individual creators on Instagram and such. The reddit forums seem full of recovered/cured people (questionable ones imo) or health food conspiracy theorists, which is fine if you're into it but it get depressing and frustrating.

I scroll there daily, but from now on I'm gonna stick to my disabled, wheelchairs, chronic illness, TIFU and AITA subreddits LoL

 

[hapl808]

I had sympathy at first, but the fact that the forum itself is built upon never questioning anything is 100% giving medical cult vibes. Big red flags for me, and now I have less regrest getting kicked out lol.
It's making it feel like those Lyme forums where every single symptom *must* be connected to Lyme, when in reality its Lyme+other illness and deficiencies all in one the majority of the time. (this of course happens in every forum to some degree for every illness, but Lyme is known for this connect the dot behavior going overboard). We have to be able to question ourselves and each other.

Yep. The bad API stuff on Reddit was a good excuse for me to stop posting there. I used to be active with 50k karma, but I think it's not a good use of my limited energy.

The medical cult vibes is part of why physicians don't take us seriously. Sadly, until there are accepted diagnostic criteria, we either suffer from the Cult of Everything, or the Hypochondriac (Cult of Nothing). I even hate saying I have ME/CFS, because after thousands of hours of research: I don't know what ME/CFS is. I usually say ME/CFS-type illness, because that's more accurate. Same with lyme - everyone claims their test is the One True Test, but it has to be interpreted with a divining rod and a newly saged lab. Any disease where the diagnostic is hazy becomes exponentially harder to treat.

I'm rambling, but you get the idea. This is part of why chronic illness is so hard to treat. We are absolutely barbarians trying to treat glioblastomas with leeches and mercury, but we think we're in an episode of Star Trek. Even the well meaning physicians are stumbling around in the dark on a good day, and there aren't too many of them.

 

[RyeRyeBread]

Yeah, when I was mild-moderate, I just crashed a lot. I could do a full day of work or travel, but then needed 2-3 days to recover. I stopped being able to work out for 2 hours - first lowering to 1 hour, then 30 mins, then 20 mins, then pretty much stopped weightlifting for 10+ years (I never should have restarted). My legs always felt 'heavy' and I stopped generating endorphins after physical activity. All stuff that mostly led to shrugs.

I hope you can get a neurologist - I didn't get one until I already was having trouble walking. Even then, and even when I started using crutches - they just offered more invasive "well we can do a biopsy" without any explanation of what they would look for. Always felt like a gauntlet thrown down: if you aren't willing to do a biopsy or an LP, then it's probably not that serious. After hearing a few horror stories of CSF leaks, I'm glad I didn't do that.

I do think a brain MRI could be helpful and hope you can get one. Not that MS is that well understood or easily diagnosable, but at least it's taken a bit more seriously by doctors and people.

I've been able to avoid bigger crashes a lot in the last year, but I still have a wavering baseline/possibly rolling PEM after activities like showers, meals, going to appointments, etc. I've been pretty good with pacing and managing, and I'm hoping I have enough energy to start working soon once I get my new wheelchair - but the only thing I feel like I don't really have a "grasp" on are the neuro symptoms that come with a moderate crash. Hopefully I can get a scan

If I do I'll be sure to share pics!! Brain selfies!!

also, biopsies sound scary smh I ain't doing one of those unless they know what they're looking for and it's likely they'll find it LoL

 

[linusbert]

also there seam to be some folks who are moderate sick and so tired of this shit that at some point they just say they are better or cured... but are not really better.
its some kind of lieing to themselves and therefore tell untrue stories.
i dont think these kind of folks are active on this forum though.

the hallmark for cfs for me is PEM, if this isnt present, its not cfs. being tired alone doesnt fit for me.
i think canadian consensus paper also goes that way.

 

[hapl808]

the hallmark for cfs for me is PEM, if this isnt present, its not cfs. being tired alone doesnt fit for me.
i think canadian consensus paper also goes that way.

I tend to lean this way as well. For me, PEM was the consistent symptom - even when my GI symptoms waxed and waned. I just never accepted the term PEM until really the last 5 years - partially because I felt the ME/CFS community was filled with negative people. Only once my symptoms got as bad as those 'negative people' did I finally realize that maybe the community wasn't wrong, but I was.

Nonetheless, when I was 'mild' I still had constant crashes. I always thought it must be food related and tried anti-candida diets, vegetarian, keto, carnivore, etc. My crashes were so delayed that I just didn't put together, "Hey, you worked on the computer a lot the day before yesterday - maybe that's why you feel like death."

 

[wabi-sabi]

Same with lyme - everyone claims their test is the One True Test, but it has to be interpreted with a divining rod and a newly saged lab. Any disease where the diagnostic is hazy becomes exponentially harder to treat.

Oh, this is so hilarious and true! I look forward to the day when I can roll on down to sickbay and Dr. McCoy will give me one pill to cure them all!

I am both frustrated with and have sympathy for all those on reddit. I do have hope that we are getting closer to understanding what MECFS is and I am very excited to find out. Are we a mishmash or different illnesses with similar symptoms? Are we different levels of severity of the same thing? Are there lots of causes leading to this illness?

On the happy side, I have been tested for Lyme and that's negative with and without the sage smudging.

 

[RyeRyeBread]

also there seam to be some folks who are moderate sick and so tired of this shit that at some point they just say they are better or cured... but are not really better.
its some kind of lieing to themselves and therefore tell untrue stories.
i dont think these kind of folks are active on this forum though.

the hallmark for cfs for me is PEM, if this isnt present, its not cfs. being tired alone doesnt fit for me.
i think canadian consensus paper also goes that way.

I've seen posts where people in the reddit subs were asking "mecfs but without pem??? anyone else?" and people were like "yeah I feel tired after doing stuff, that's it, so yah it can be mecfs" and it's like nooo it's so much more than that pls do your research

and the people who confused (or their doctors confused) chronic fatigue with ME, and they refuse to acknowledge the difference or do their own research to see that they do not have this illness, but instead have a very valid symptom/condition that does often get cured/treated and goes away after a time... 6 months to a year... very often confused with this illness... sndhsjbdjshdjs

we need biomarkers LoL

 

[wabi-sabi]

at some point they just say they are better or cured... but are not really better.

You know I saw a twitter post a while back by Dr. Putrino along those lines. He was doing a survey of people who had recovered from long COVID and when he looked at the questionnaires, lots of people who said they were recovered were really still having symptoms. He didn't have any explanation about why people think they are recovered. Maybe some combo of desperately wanting it and becoming slightly less severe.