Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

I can’t help but think that this attitude stems from a belief that sick people are inherently worth less, so they allow for explanations that are rooted in what they perceive to be the nature of the sick people. These explanations are embraced because it confirms their own status of superiority because they are healthy.

 

I think I know which one you mean: 'ME/CFS & Long Covid Recovery, Support, & Inspiration'. It does include a lot of people enthusiastic about these brain retraining programs.

The moderators however, seem to have conflict of interest for selling courses for these programs and often do not have a formal medical degree. If I understand correctly, it grew as a general support group but has recently been changed to promote these courses and recovery programs.

 

I think that’s what upholds the attitude. But I also think for a lot of people it’s less deep than that. Humans naturally seek meaning in everything. That’s what makes us human. When there is no meaning, we like to make our own.

So why people get sick or not, since it is such a strong an intimate experience, and we tend to apply meaning to everything, is probably one of the most common targets of these sorts of pseudoscientific explanations seeking to apply meaning to something we don’t necessarily understand.
(And the historical and discursive inertia continue, as this has been the case for centuries, in many religions illness was seen as punishment or karma).
(also, just world fallacy).

 

It seems that the people who sell and promote these brain retraining courses rarely hold a medical degree or have a scientific background.

Phil Parker (lightning process) – osteopath
Miguel Bautista (CFS recovery) – personal trainer
Raelan Agle (Brain Retraining 101) - social work degree
Ashok Gupta (Gupta Program) – economics degree?
Dan Neuffer (CFS Unravelled) - ?
Toby Morrison (CFS Health) - ?

 

If anyone wants to read the description and the rules: https://www.facebook.com/share/g/1PmYGXH2qF/?mibextid=wwXIfr

You’re probably right!

 

If I remember correctly, that's the one where virtually every guest has something to sell. There is a great deal of desperation out there; many people whose lives have been turned upside down.

It's not at all surprising to me that there are grifters preying on desperate people. Saddening, but not surprising.

Astrology is popular. "The Secret" sold 30 million copies. Popularity and correctness are two very different things.

If these ideas have merit then why not engage in the scientific process, rather than setting oneself up as a "mind-body therapist" or peddling various dubious notions as some kind of influencer? If there is genuine merit to them their ideas would spark scientific interest and debate, but, strangely, their proponents don't seem interested in that. You should ask yourself why. These people often make grandiose claims about their approach being rooted in neuroscience but to anyone with a genuine scientific background it's all very obviously "neurobabble", not neuroscience.

In my view these people with no background or training or qualifications to meddle with people's minds and no oversight of their actions shouldn't be permitted to set themselves up as psychotherapeutic authorities in this way. Even those who are so qualified often have a remarkably limited understanding of what it is they are doing. The potential for harm is very considerable indeed.

 

Yes, and the guests actually have to pay her to be on the show and sell their product. So the whole video is basically an advertisement.

https://www.s4me.info/threads/recov...m-youtube-goldsmiths.38843/page-3#post-537786

 

I find these ideas and discussions both fascinating and also unsettling to think about (because of my vulnerability as a patient). If it was true – and we must at least accept the possibility that it is true in the absence of evidence to the contrary – then how could it be proved or falsified? Theoretically you might be able set up trials similar to the rituximab trials with a different drug that has no therapeutic effect on ME/CFS having published papers with made up data showing evidence of efficacy in order to persuade participants of its efficacy, but that would breach even more ethical standards than the worst BPS trials.

Even if/when research reveals the biological causes and mechanisms of most people who are currently diagnosed with ME/CFS, there will very likely be a subgroup of people who do not have whatever abnormalities are identified. The possibility would then exist that most people in that group have the type of neuropsychiatric illness discussed above, but it would be a terrible mistake to throw them under the bus by inferring that be the case – although I fear that is quite likely to happen.

 

I am more sanguine. I think research will reveal the pathways in both groups, if there are such groups. From what I can glean, relevant data are emerging at a similar rate for neuropsychiatric and immune disorders.

 

Just a quick post to say I'm not ignoring the responses, I'm just very busy today but will be back to reply. Thanks.

 

You might want to take a tour in the forum before you make the claim that our understanding is out of date. We don't discuss pop psychology fluff much, we look at what the researchers are saying, read and discuss the papers as they are published, and there isn't even much of a concept of being in date, or out of date, because the ideology is built on a bunch of narratives and assertions made out of nothing. It's astrology for doctors.

The idea that the field is progressing and has "moved on" is part of their mythology. Truth is that if Freud were transported to today, alive and well, he would find nothing surprising or new in what is being said, other than the terms used. He'd be up to speed on the whole thing in one hour. They are just models, like the celestial spheres. They are not useful models, completely hollow.

 

In that situation, wouldn't there be some people faking the disease and recovery, just to get "likes" or whatever people try for in those groups?

 

Recently a new member joined my group and asked a question about how she was supposed to do exercise as she is just not capable without triggering PEM. She said she read a lot of books about ME/CFS and they universally recommend some kind of exercise. I asked her about the books and they were all the brain retraining types.

She could go on short walks but nothing more and wanted to know how to actually incorporate proper exercise. I told her about all the pseudoscience going on about brain retraining, how it is unproven and these people pushing it are not actual doctors or experts and that for example the NICE guideline specifically says LP (which is basically brain retraining) is something that should not be recommended and also what the guideline says about exercise in general etc. And that she could ruin her health even more if she keeps trying to exercise when it is clear from her own words that she is not capable of doing it.

She unfortunately decided to just leave my group and is probably hanging out in a group like Raelan Agle's. The method is clearly not working in her case, yet she is still holding out hope and I wonder how many more of those members are there in those groups who don't even experience any improvement, they are just there for the hope of recovering. It was very very sad for me to experience this and I feel so powerless when this happens.

Also, some rules from Raelan Agle's FB group:

So differing opinions may be moderated. I don't know for sure as I'm not a member but the last time I checked, her YT comments looked moderated. People may not even see the negative or disappointing experiences in such group if they are discouraged or moderated.

 

This category might also include some of the ‘it stopped working after X time’-people. Essentially, any positive change has to be caused by whatever they were taking and any negative change has to mean that whatever they were taking stopped working.

Edit: swapped effect for change.