Recoveries reports - reasons, theories and discussions

Liie

Liie

Senior Member (Voting Rights)
Reports about recoveries from ME/CFS and long covid are common. They also are often used to influence the public discourse in various way. Many people seem to be convinced of various treatments by recovery stories, so it seems important to understand them, for argumentation and advocacy.

This thread is for discussion the cause of recovery reports, collect facts and thoughts about them.

These are a few reasons I can think of:

1. Is it because ME/CFS pass spontaneously, and people relate that to whatever they were believing in at the time?

2. People have some kind of biomedical underlying disease, that respond to different treatments?

3. Some people have a the psychological condition that BPS people think about: Fatigue from some cause, which is misinterpreted by the sufferer, which leads to avoidance, stress, fear, and so on. And really benefit from CBT/GET or similar treatment.

4. People have another psychological condition, such as burnout or depression, which is misdiagnosed as ME/CFS, and really benefit from CBT/GET.

5. People having a remission, and are in reality still sick, but think they are recovered.

6. People being influenced by things like Lightning protocol to deny their symptoms.

7. Lies as part of grifts to sell treatments.

A reported recovery could be a combination of these reasons, of course.

Some reasons are only relevant for psycho-cognitive techniques such are CBT or "brain retraining".
 
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@rvallee contributed this. This kind of stories are really interesting! They should be highlighted more. They are good arguments for why recovery stories are bad arguments.

rvallee said:
Also, although in the last 1-2 years of Long Covid there were a lot of boasts and testimonies about which supplements made them recover, the vast majority of recovery reports in the last 2 years have become what is the usual standard: didn't do anything different, some day things just got better, and kept on being a bit better, without changing anything. Lots of relapses, too. It's all over the place. All of which nullifies all the healing magic anecdotes, but because it's so easy to walk away from it, they can also simply ignore it.
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Liie said:
3. Some people have a the psychological condition that BPS people think about: Fatigue from some cause, which is misinterpreted by the sufferer, which leads to avoidance, stress, fear, and so on. And really benefit from CBT/GET or similar treatment.

4. People have another psychological condition, such as burnout or depression, which is misdiagnosed as ME/CFS, and really benefit from CBT/GET.
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It would also be possible that the conditions do not benefit from CBT/GET, but rather pass naturally with time. We shouldn’t automatically assume the recovery was caused by the intervention just because the condition wasn’t ME/CFS.
 
I don't like to squash enthusiasm for a discussion, but I don't see the point of this thread.

Surely at the moment all we can say is we don't know why pwME and pwLC recover. Any anecdote that makes a claim for a particular treatment may or may not be due to the treatment, or may be spontaneous recovery, or something unrelated to the treatment that the patient happened to experience around the same time.

Until we have well run clinical trials and long term follow up data for them, we simply don't know.

We already have multitudes of threads about possible treatments that are promoted in various ways, and posts on those thread with recovery anecodotes. Is there a point of bring them all together and repeating the same stories?
 
People get used to the illness, lose awareness of how badly they are affected. When the illness gets a little better for no clear reason, as many illnesses do, the hope of recovery returns strongly and the person overestimates how well they are because they've lost touch with what it means to be well. They just know that they feel better and can do more, and want to believe that they're recovering. The few lingering doubts are annoying but they can be extinguished by just being positive, right? Maybe that's how some recovery stories happen.
 
Trish said:
Is there a point of bring them all together and repeating the same stories?
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I think so. BPS proponents point to the recovery stories as evidence that recovery is possible, and that certain treatments increase the chance of recovery.

Many people probably base their decisions to try the various BPS programs on these stories. So it seems worthwhile to compile them to examine what they are evidence of, if anything, to act as a resource for people who are considering interventions based on how promising the stories sound.

And maybe some other unexpected patterns might emerge if all the stories are examined together.
 
I think this thread is valuable. I'd like to discuss some of the (very few) recovery stories I've seen that seem interesting. I was big into meditation before I got sick, so I wanted to believe this stuff could work, and I've paid attention to some of these stories over the years.

I think many of the "recoveries" can be explained easily. I've seen people who, it seems clear to me, had other issues going on like an eating disorder or being in an abusive situation. They got away or did therapy, did brain retraining, attributed healing to brain retraining.

People who have recovered from 1.5 years of long covid are lecturing us malingerers (/s) on Substack, Facebook, etc, how we're missing the point with the WIRED article, because see, they recovered from brain retraining and maybe we should stop being mean. These people did not listen to pwME when we told them to pace, and now they won't listen to the history of BPS models in ME.

However, there are a few examples of BPS recovery/improvement stories where I'm curious because I don't know what's going on. And I don't see how meditation and "Stop!" could possibly end severe symptoms. When I get more spoons I'll try to bring them up here.
 
I used AI to scrape Reddit posts of recovery. What was interesting was that it found people were hesitant to say “recovered” they preferred to say remission as they weren’t certain it was permanent (wise) also that it was usually a combination of factors like meditation, stress reduction, supplements, therapy, brain training etc all at the same time when remission occurred.

Interesting that it wasn’t often attributed to one treatment, and as we know “passage of time” can be a factor anyway.

Could be one thing, could be another number of things, could be nothing. Clear as mud.
 
MrMagoo said:
I used AI to scrape Reddit posts of recovery. What was interesting was that it found people were hesitant to say “recovered” they preferred to say remission as they weren’t certain it was permanent (wise) also that it was usually a combination of factors like meditation, stress reduction, supplements, therapy, brain training etc all at the same time when remission occurred.

Interesting that it wasn’t often attributed to one treatment, and as we know “passage of time” can be a factor anyway.

Could be one thing, could be another number of things, could be nothing. Clear as mud.
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You are forgetting that many of these stories are marketing to pump for a treatment. They are fake stories, trying to boost revenues in a treatment or supplement. Works every time

People ask the guy for the supplement brand or course or treatment, and of course, he recommends it with enthusiasm!
 
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Also regarding reddit: there’s a new thing called AI Engine Optimisation, where people or companies use AI bots to spam the sources they know that LLM models use, like Reddit.

At this point, your default assumption has to be that anyone you interact with on the generic social mediums are bots. It’s really that bad.
 
ryanc97 said:
You are forgetting that many of these stories are marketing to pump for a treatment. They are fake stories, trying to boost revenues in a treatment or supplement. Works every time

People ask the guy for the supplement brand or course or treatment, and of course, he recommends it with enthusiasm!
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No I’m not, we are discussing people who regularly post on Reddit about their illness recovery. There may be a few people trying to push something they are selling, but the mods usually deal with that, also I asked the AI to track the user name over a period of time.

If it was someone promoting something they would have had to spend months/years first pretending to be ill and then following it up and months or years after keeping the story up.

This is different to the lame “the answer is magic brain reshaping” or “my inflammation was cured by activated charcoal and spirulina pills” with a link, which pop up on Twitter/insta/FB stories in the comments
 
So I've spent some time lately revisiting some of these recovery stories and seeing "recovered" people on social media chastising us for being mean and "silencing" the helpful brain retraining promoters. These are people who credit their recovery to brain retraining.

The anger I have for charlatans hawking these courses is high, but I have to say these "recovered" people can be pretty unscrupulous and infuriating too.

It's irresponsible of them to say authoritatively brain retraining healed them and that everyone with ME should try it... especially when they were also doing 5 other things and it coincided with them resting more. If they would say, "hey, I got better while doing these 5 things, and 1 of them was brain retraining, make of that what you will" -- fine. But that's not what most of them do.

Even with certain supplements that are generally fairly safe, it's irresponsible to shout that it cured you and double down against any pushback. With something that can make us worse and costs $$$$$ it's unethical.

But if you point that out you are "silencing" them and refuting their lived experience. Then they turn off comments.
 
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