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

[Rufous McKinney]

I possibly missed that hostility, but sorry that happened.

perhaps my choice of words was a bit harsh. It felt hostile, but maybe it's just more immediate skepticism followed by some invalidation.

when people say no one listened, but plenty of people have tried similar things but just didn't get similar results.

thats probably more often the case.

Just how many people actually tried the CUMIN cure? Will we ever know?

I think the main thing that meets with hostility here are versions of DNRS. I don't have the same feeling, but I understand the hostility a bit.

Having been exposed to a whole variety of experiences in this life, I cannot close off the valid possibility of everything from spontaneous healing, waking up well, Prayer, ritual or any other means of modifying our given physical state.

To entirely dismiss other modalities seems like a mistake. Because we know that sometimes, it really does happen.

My last listening to something Gupta, I turned it off, skeptically. Can't he provide better examples than this SAME one?

 

[hapl808]

Just how many people actually tried the CUMIN cure? Will we ever know?

I think a number of people have even reported on it. I've tried it several times - both to try to shield from PEM and as a PEM recovery. Cooking with larger amounts doesn't seem to help the way having a bit all at once. I may revisit it as it certainly didn't stop PEM, but I think maybe it helped 10%-20%. On the threshold where it's hard to tell, but I think I only used around 1/2 tsp maybe up to 1 tsp and can't remember now what the recommended amount was? I encapsulated because that much at once isn't very tasty to me. (Capsules are great for people if they don't like the taste, although you'll still get a bit of it when the capsule digests.)

I never dismiss modalities, even for others. If prayer worked for them or Gupta, then that's great. I tried Gupta for a couple months because at least he doesn't make a big deal out of 'believing' but he still makes you watch all the videos. Mantras are kind of 'nice' I guess, but I found zero effect on any of my symptoms.

 

[Rufous McKinney]

I think a number of people have even reported on it.

may be 3 or 4 others...I seem to think found its helpful, then probably a few more others, found it Not.

I admire folks who successfully try things, and manage to find some consistent results. Kudos.

 

[nolongerdiseased]

I feel like there is both the problem of some cases being incredibly questionable and some users, especially on reddit, being overly comfortable undiagnosing strangers who they have never talked to (not to say that OP falls into this category!). Maybe I am a hypocrite but I feel like there is some nuance to the situation.

When it comes to people who talk about how going on a spiritual retreat took them from bedridden to cured in 4 days, how with Dissociative Identity Disorder one of their alters has ME/CFS but not the others, and how childhood trauma is the root cause of their self diagnosed ME/CFS complete with 1 hour long "PEM"... it is hard to say these cases are correctly diagnosed ME/CFS.

But I have both seen and experienced an uncomfortable eagerness to dismiss the cases of people who had viral onset illness with PEM, who appear to fit ICC/CCC diagnostic criteria, because of some arbitrary reason. I feel it carries a real sense of "you didn't have real ME, because I have real ME" and "this is why we need biomarkers, because biomarkers would prove that I have real ME and you didn't, despite fitting the gold standard diagnostic criteria..." I really am also not a fan of the no true Scotsman approach, where if you recovered you couldn't possibly have had ME. It just feels self-defeatist.

 

[wabi-sabi]

But I have both seen and experienced an uncomfortable eagerness to dismiss the cases of people who had viral onset illness with PEM, who appear to fit ICC/CCC diagnostic criteria, because of some arbitrary reason. I feel it carries a real sense of "you didn't have real ME, because I have real ME" and "this is why we need biomarkers, because biomarkers would prove that I have real ME and you didn't, despite fitting the gold standard diagnostic criteria..." I really am also not a fan of the no true Scotsman approach, where if you recovered you couldn't possibly have had ME. It just feels self-defeatist.

I'm very sympathetic to this perspective. I think the best we can do at this point is to say if a person meets diagnostic criteria, then they have the illness. When we get more research we'll have more insight into the nitty-gritty of what's going on inside each of us. But it sure looks like the diagnostic criteria are describing a unique problem unlike other illnesses.

It's hard to hear stories of recovery without it bringing up some feelings. On the one hand, I have to hope that if I can just go some magic period of time without crashing myself, that I could get better. It hasn't happened yet.... but then I can't seem to stop crashing myself. I also have to remember that sometimes people do genuinely get better, and every recovery story isn't false hope.

However, I do draw a bright line in my mind (that may not be there in reality) between neurologic and psychiatric disease. I am definitely guilty of the one true scotsman thing when I hear stories that suggest depression, PTSD, etc. Of course, a person can have two diseases at once and might even have PTSD or depression from the ME/CFS "treatment", but I do try to differentiate the two. I'm sure much of this comes from the BPS brigade and trying to fight them. We surely shouldn't start fighting each other in the process.

Then again, I also think about this with other fatiguing illnesses. What if you have undiagnosed cancer, MS or who knows what other scary illness and read some stuff online about ME/CFS, and then think that sounds like you? Then I think it's good for the ME/CFS community to push back and encourage a person to seek further medical advice. It's so hard to get a real ME/CFS diagnosis which can create confusion for people. I know when I saw Unrest, I thought "That's me!" My doctors went along with my self-diagnosis, but it's always in my mind to wonder if I have something else. They've tested me for everything they can think of and nothing comes up, but I'm never 100% sure.

So the upshot is, I'm not keen on excluding people so I can have the one, true illness. But, I want to advocate and educate so there's less confusion about what ME/CFS is and less misdiagnosis, self or otherwise.

 

[hapl808]

They've tested me for everything they can think of and nothing comes up, but I'm never 100% sure.

This is a fundamental problem to me. I'm not 100%, and IMO no one can be 100% sure by definition. If we don't know what the illness is, we can't be sure if anyone has it because maybe it's three illnesses or ten or one or who knows?

I usually say ME/CFS-like illness or symptoms, because that's more pedantically accurate. I'm not a big fan of medicine's approach to symptom cluster disorders (hence why I think most of psychiatry is BS), as opposed to distinct diseases.

 

[Rufous McKinney]

On the one hand, I have to hope that if I can just go some magic period of time without crashing myself, that I could get better. It hasn't happened yet.

I remain totally convinced this is true.

Its this pot of gold at the end of the rainbow- if I could just rest enough, I'd get there...me thinks.

What if you have undiagnosed cancer, MS or who knows what other scary illness and read some stuff online about ME/CFS, and then think that sounds like you?

I now get to ALSO be the person with some scary cancer. Add diagnoses.

Lumps, more and more lumps appearing. How disconcerting.

They've tested me for everything they can think of

in my case, No they Haven't. I"m not resilient enough, to go thru all the many tests that still exist that might show something. Or I haven't paid enough money yet.

 

[Rufous McKinney]

between neurologic and psychiatric disease.

for me it came down to the day my "cool" friend entirely dismissed the existance of this illness as "An Illusion".

Just a flat out 100% invalidation of EVERYTHING.

Wow. Im just a being with nothing better to do? Than fake an illness?

 

[linusbert]

for me it came down to the day my "cool" friend entirely dismissed the existance of this illness as "An Illusion".

Just a flat out 100% invalidation of EVERYTHING.

Wow. Im just a being with nothing better to do? Than fake an illness?

i can do fake health for a few minutes

 

[Rufous McKinney]

fake health for a few minutes

I just had a normal person friend stop by. I faked it for maybe two minutes.

 

[Katy131]

i can do fake health for a few minutes

I just had a normal person friend stop by. I faked it for maybe two minutes.

I recently saw a quote on a blog somewhere which summed this up neatly:

"We don't fake illness, we fake health."

Sigh.

 

[Katy131]

I haven't read every single one of the posts on this five page thread so excuse me if this has been discussed.

My 2p's worth and current bugbear is that it seems to me that the medical world is far too pharma-centric. In many cases (and I'm not including serious life-threatening conditions like cancer here), the body wants to be well and working with the natural homeostasis of the body, finding out and giving it what it needs or is lacking should be the first line of treatment. It's not like we are all ill here because we are deficient in some big pharma drug. Now, finding what the body needs to achieve homeostasis and wellness is complicated and difficult and takes a lot of time, effort and money - usually funded personally by the individual, if they are lucky enough to have access to the relevant finances. The problem is compounded by the fact that in the medical world there is an element of arrogance - "if we can't find the problem in tests then it doesn't exist" "if this drug or that drug doesn't work then it doesn't exist" "if there is no research out there showing this then it doesn't exist" - and why would there be unless some big pharma company has paid for huge studies and research on their drug?

It's taken me 50 years and working with my functional medicine doctors over the last nearly 20 years to identify that my chronic illness was triggered by an undiagnosed untreated Lyme disease infection when I was a child. This kind of thing shouldn't be so difficult or take so long but the infrastructure to identify and treat long term illness is just not there.

 

[JasonPerth]

Looks like the moderator of r/cfsme is also the mod of r/mecfs.
Great. The sub named after our illness pushes brain retraining and exercise bans you if you speak up about it.
Surely something can be done?

You cant have a moderator of r/cancer banning people providing cures for example

 

[JasonPerth]

People in the brain training field define recovery the same way the UK psychologists defined Recovery in the PACE trial……

 

[linusbert]

Looks like the moderator of r/cfsme is also the mod of r/mecfs.
Great. The sub named after our illness pushes brain retraining and exercise bans you if you speak up about it.
Surely something can be done?

You cant have a moderator of r/cancer banning people providing cures for example

contact reddit company, say someone provides non scientific incorrect information. demand his reddit be renamed to like r/burnout or something.
though i think chances of anything happening = 0,0.......01%

 

[hapl808]

Look up recent articles about the decline in quality of Reddit moderators after the protest - a few journalists have covered it. Send them a short note describing the issue with a few links to official sources like NICE showing they are directly contradicting public guidance. Maybe the journalist will include it in a future article about ME/CFS or Long Covid.

 

[JasonPerth]

Someone on another post about the same thing said the below

Can someone confirm this? How do we link that name with the anonymous reddit and twitter account? If we can confirm this im happy to go public

Those two Reddit sub-forums (r/cfsme & r/mecfs) are run by the notorious promoter of the psychosomatic view of ME/CFS, David Jameson. He operates under many user names:

Reddit account: https://www.reddit.com/user/swartz1983/

Twitter account: https://twitter.com/cfs_research

On Wikipedia his username is Sciencewatcher, and you can see by his many contributions to Wikipediathat he tries to psychologise many diseases, not just ME/CFS (though ME/CFS is his main focus).

His website is here, and his book is here.



Jameson is a real fanatic and extremist believer that ME/CFS is "all in the mind". Not only does he push psychosomatic / somatoform views of ME/CFS, but he also will criticise any biomedical research. For example, he will always criticise the idea that viruses are involved in ME/CFS.

 

[JasonPerth]

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

Its a horrible resource when the moderator of r/cfsme and r/mecfs (the exact title of our illness) used one sided pseudoscience opinions and blocks deletes bans anyone who disagrees.
They promote Brain retraining and Exercise.
This is wrong

 

[linusbert]

i wonder if those people actually receive funding and support from certain lobbies.
there is definitely a great interest in the medical community to write cfs off as psychosomatic.

what is happening right now , IMHO, they establish fake research and sources, hence the name "cfs_research" to give themselves credibility.
now they do this a certain time, and later doctors and politicians will refer to those fake sources and claim the sources as valid reason for psychosomatic and graded exercise therapy sources.

so its a huge disinformation and even discredit campaign i would believe judging by current facts.

this needs to be stopped. but i dont know how.

 

[JasonPerth]

i wonder if those people actually receive funding and support from certain lobbies.
there is definitely a great interest in the medical community to write cfs off as psychosomatic.

what is happening right now , IMHO, they establish fake research and sources, hence the name "cfs_research" to give themselves credibility.
now they do this a certain time, and later doctors and politicians will refer to those fake sources and claim the sources as valid reason for psychosomatic and graded exercise therapy sources.

so its a huge disinformation and even discredit campaign i would believe judging by current facts.

this needs to be stopped. but i dont know how.

Need reddit to somehow rename the subreddits from r/cfsme and r/mecfs to r/brainretraining and r/cbt
Perhaps they will take action if we report with adequate infomertion like the infomation above