Recoveries reports - reasons and theories

[Liie]

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".

 

[Liie]

@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.

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.

 

[forestglip]

Some anecdotes of recoveries to consider:

- https://healwithliz.com/me-cfs-recovery-stories/
- https://www.recoverynorway.org/

 

[Chandelier]

Site with more links to sources for recovery stories: https://forum.sickandabandoned.com/t/recovery-stories-mega-compilation-180-stories-23-rcts/547

 

[Utsikt]

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.

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.

 

[Trish]

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?

 

[Hoopoe]

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.

 

[forestglip]

Is there a point of bring them all together and repeating the same stories?

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.