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

[Jonathan Edwards]

I am quite enjoying these threads now that i have made use of the ignore function.

It always amazes me how many times one can give the benefit of the doubt and with a little exploration find that there is no doubt.

It is all frauds and their groupies.
It is useful to have that brought to one's attention by new posters from time to time.

 

[Joni]

It’s all very “I’m an American who can’t afford healthcare”

Yes that is part of it for a lot of us poor, uninsured or under-insured Americans who can't access disability benefits and can't work enough. I have not been able to access medical or dental care that I need for the last 15 years, or not reliably so. Even in potentially life-threatening emergencies. There are about 10 states in the US that do not have state sponsored insurance even for the poorest of people. So you'll hear many Americans say they have Medicaid and think that everyone has access to Medicaid, but those of us in certain states have nothing. And some of us have been voting for all the right people and were politically involved for decades to no avail, so it's frustrating when people dismiss us with, "well they voted for this"

so yeah these programs have held their allure in times of desperation for people like me when we are faced with the eventual prospect of literally dying on the street if we cannot improve, but we may be able to spare the $300 when one of the more affordable programs goes on sale

 

[Maat]

Today I watched a youtube interview by Ben of re_origin with Raelan. It's 2 years old and 45 mins long. What a waste of my time.. It seems to be re-hash of the sort of stuff taught under the NHS and the auspices of the queen of research grants, and under which I was treated and severely harmed 15 years ago (the basis of my claim under the Ombudsman. @UkPoster please do not attempt to make assumptions about what I was or was not taught as I was trained by the people who literally wrote the the NHS published book on it in 2006.

3 days spending a little time on the internet and my body is now screaming at me and today sweat has been pouring off me in rivlets among many other symptom, so I'll say tarah for now.

But I will leave you with this thought; there is no incentive to speak out and protect patients from unregulated, unsupervised and potentially harmful therapies, in an arena where no accountability for harm can be sought, as the chances of these course providers carrying indemnity insurance is slim to none.

But what it does provide are success stories a plenty with no serious follow up. Why would there be the need for research, when youtube and social media provide anecdotal evidence for free. Hell, no problems with pesky informed consent issues either. Let the hoards of clamouring 'recovery' stories multiply until they drown those who have been undeniably harmed No need for inconvenient definitions of 'recovery' or Helsinki rules to trouble consciences.

About us — Oslo Chronic Fatigue Network

www.oslonetwork.no

I also looked up the meaning of clinical reputation laundering, suggested by an algorithym.

I'm off to wrap a cold wet towel around my neck which usually calms down the profuse sweating quite quickly. and see if I can force down some pureed nutrition.

 

[wallfish]

That guy publicly stated on some get rich podcast that his goal was to make a million dollars a year from selling his $7k recovery program. Any less than the "double comma club" would be very disappointing to him. In another clip he discussed what kind of cars and extravagant lifestyle he was aiming for.

I wonder if one of those hugely popular investigative journalism youtubers would be interested in exploring this stuff.

I imagine that the ME/CFS primer that's apparently in the works would be a good resource to share when reaching out to people like that.

Is a mention of this side of ME/CFS in scope for that document? (@Hutan, are you the right person to ask?)

 

[Joni]

More about Miguel and Raelan in a comment on this thread. I believe the group is a large MECFS recovery group on Facebook.

I'm the moderator of Raelans group who was banned for stepping down, because I didnt agree with the page being leveraged for business interests and also, the lack of transparency planned around how Miguel would be granted access to the space, nor the business partnership taking place between Raelan and Miguel. After stepping down as moderator, I was banned hours later, never to be invited back, then scape goated in the space, thrown under the bus, and the community was told that I was "endangering the well being of sick people" by stepping down before Raelan had her chance to make an announcement about the upcoming changes. Basically I was thrown under the bus, slandered and defamed in order for the new regime to take over. It's a real bummer as I was a care taker to that space with the other mods for years, while raelan had nothing to do with the space; and when she came back in after it had grown to 12K members, and we were not on board with the changes which felt like a betrayal to the spirit of the space, we were told to leave quietly. I left quietly but by stepping down made it obvious something was happening I could not support, and was BANNED from the space.

 

[MrMagoo]

Yes that is part of it for a lot of us poor, uninsured or under-insured Americans who can't access disability benefits and can't work enough. I have not been able to access medical or dental care that I need for the last 15 years, or not reliably so. Even in potentially life-threatening emergencies. There are about 10 states in the US that do not have state sponsored insurance even for the poorest of people. So you'll hear many Americans say they have Medicaid and think that everyone has access to Medicaid, but those of us in certain states have nothing. And some of us have been voting for all the right people and were politically involved for decades to no avail, so it's frustrating when people dismiss us with, "well they voted for this"

so yeah these programs have held their allure in times of desperation for people like me when we are faced with the eventual prospect of literally dying on the street if we cannot improve, but we may be able to spare the $300 when one of the more affordable programs goes on sale

I’m sorry that’s the case for you. The NHS Isnt brilliant bit at least we have something. Usually. Dentists can be hard to see.m

I see them as part of your MLM type of thing, like Herbalife?
linked to your prosperity gospel type of evangelical churches, everyone needs to be healthy, wealthy, well-behaved and have a shirt and tie on, cookie cutter style.

Which is why it jars a bit for me.

 

[Felis Catus]

More about Miguel and Raelan in a comment on this thread. I believe the group is a large MECFS recovery group on Facebook that is used as an innocent looking sales funnel.

Anj wrote about it publicly on her Fb profile. I'm too unwell to dig now to post it here but one of the reddit comments sounds like her and sums it up well.

 

[wallfish]

More about Miguel and Raelan in a comment on this thread. I believe the group is a large MECFS recovery group on Facebook that is used as an innocent looking sales funnel.

Great stuff, I am listening-and-learning

 

[forestglip]

the only person publicly distancing herself from him is Anj Graineri. She was a moderator in Raelan's FB group. When Raelan appointed Miguel as co moderator, Anj objected. Raelan kicked Anj out of the group and blocked her, which I'm sure is a hard blow for someone trying to sell brain retraining courses.

Interesting. Here's are snippets from Anj's description of events:

4. In order to create a feeling of safety, we stopped allowing service providers to promote their work. We held ourselves as moderators to the same rules, viewing our work as a kind of public service.

6. In early December, we were made aware that Raelan would be returning, & making significant changes that seemingly went against the new energy of the space, including affiliate marketing partnerships being grandfathered in & given a voice.

9. Jack, followed by myself made our own announcements first,about stepping down in our roles; for reasons we have both already shared openly.
10. I was then banned.

I'm curious what Raelan's version of the story is.

 

[Jonathan Edwards]

It's a real bummer as I was a care taker to that space with the other mods for years, while raelan had nothing to do with the space; and when she came back in after it had grown to 12K members, and we were not on board with the changes which felt like a betrayal to the spirit of the space, we were told to leave quietly.

I guess this poor soul thought they were 'helping' 12 thousand people too.

It brings me back to my thought that the adage 'first do no harm' applies to all human beings, not just doctors.

 

[ChronicallyOverIt]

obvious how ill they were and how well they are now. You can see it in the photographs. Multiple photos. And people come back and give updates a year on/two years on/five years on to say 'I'm still well.' I do understand why you want to make it make sense in your mind and undermine this narrative

Please take some time read this:

Survivorship bias - Wikipedia

en.wikipedia.org

“Survivorship bias or survivor bias is a statistical error that results from concentrating on entities that passed a selection process while overlooking those that did not. This can lead to incorrect conclusions because of incomplete data”

The gold fish bowl of brain retraining: Surrounding yourself in only fb and WhatsApp groups of people who post they are better is the definition of survivorship bias.

What about the others who don’t post?

 

[velvetneuron]

Hi, Hate to jump in here, but it’s my first time posting and I am wondering: Is there a thread for proponents of brain retraining who don’t buy the nervous system regulation theory behind it? Like a thread for actual scientific theories and hypotheses behind why it might work for some people, related to the most recently published papers and science on neuroimmune mechanisms and other related areas?

 

[Utsikt]

Hi, Hate to jump in here, but it’s my first time posting and I am wondering: Is there a thread for proponents of brain retraining who don’t buy the nervous system regulation theory behind it? Like a thread for actual scientific theories and hypotheses behind why it might work for some people, related to the most recently published papers and science on neuroimmune mechanisms and other related areas?

Welcome!

In short: not that I know of for brain retraining specifically beyond this thread and similar ones.

There is no evidence beyond anecdotes that brain retraining, whatever it means, works for anyone for any conditions. There are far more negative anecdotes than positive, and the clinical trials with a bare minimum of quality have had negative results (like SIPCOV and MINIRICO).

The current trendy topic in the «academic» circles of brain retraining is predictive processing, but there’s not much science to their work, and it you actually formalise it mathematically it gives the opposite result of what they claim (thread on predictive coding).

There are no established mechanisms for ME/CFS, so there’s nothing to compare any hypothesis to either.

Edit: If there’s a specific hypothesis you think is worth discussing or there are articles you think are interesting, you’re more than welcome to share them here, in other appropriate threads if they already exists, or in new threads (ask for help to make one if you’re unsure about how to do that). Don’t let my opinion about the current evidence stop the discussion.

 

[MrMagoo]

Hi, Hate to jump in here, but it’s my first time posting and I am wondering: Is there a thread for proponents of brain retraining who don’t buy the nervous system regulation theory behind it? Like a thread for actual scientific theories and hypotheses behind why it might work for some people, related to the most recently published papers and science on neuroimmune mechanisms and other related areas?

No, as they lament, it can’t really be scientifically tested.

I’m summarising, but it falls down between not being very measurable or possible to blind, plus they’d have to convince science researchers to test it and they can’t.

I guess because of that they need to accept they will forever be untested and unproven, and exist alongside meditation, mindfulness and homeopathy as an “alternative” medicine.

 

[MrMagoo]

Hi, Hate to jump in here, but it’s my first time posting and I am wondering: Is there a thread for proponents of brain retraining who don’t buy the nervous system regulation theory behind it? Like a thread for actual scientific theories and hypotheses behind why it might work for some people, related to the most recently published papers and science on neuroimmune mechanisms and other related areas?

I don’t think there are any, that’s the trouble.

Given we don’t know the science of ME or the definite processes involved in the body, looking at the processes brain training is theorised to affect is kind of unrelated.
A lot of the proposed theories like “neuroplasticity” don’t align with good medical research or evidence.
The latest evidence doesn’t inform brain training theories.
I suppose as brain training covers a number of illnesses you might find other fora, for example I didn’t know it was used for RSI.
That is a well scientifically defined biological issue so maybe a forum like that would be better?

 

[Sean]

Brain training is a heterogeneous mix of positive thinking, somatic tracking, mindfulness and identifying fears and personality inadequacies.

Yet we have also been told for decades by the psychosomatic crowd that paying attention to symptoms is a major part of our psychopathology and cause of our symptoms.

Except when it is Acceptance & Commitment therapy, in which case it is critical to it being successful.

Who need consistency? Just ask Prof. Chalder.

It is just the same old basic woo recipe that has been bobbing around for decades for virtually all medical conditions.

I think it would be very rare to prefer the lifestyle of not working, not being able to think, needing help with everything, the isolation, having no projects, doing almost nothing, just because it came with a sense of safety or familiarity.

There is no world in which my situation could be described as 'safe'. That suggestion is just bizarre, and typical of the arbitrary theory-led evidence-free mental gymnastics of the brain retrainers, et al.

If anything my situation is getting more and more precarious as old age, and the looming consequences of an accumulated lack of social capital and decades of poverty, all compound.

There ARE clear explanations of it. In several places:

The TMS wiki
Unlearn your Pain
The Way Out
Dan Buglio YT
Raelan covers basic explanations
Doc Tovah
They Can't Find Anything Wrong (book)
Flippin Pain talks
Free 6 weeks use of Curable with codes offered in various places
Dave Clarke
Alan Gordon (he does lots of breaking it down on Instagram)

Cite the hard science directly, please, from the mainstream journals. Show us you know what it is, understand it, and indeed that actually exists at all.

If the sneering carries on, I'll leave.

Bye.

Spare us your moral high ground act. You have delivered no robust evidence or argument in favour of your claim, and have instead consistently dodged legit criticism and questions from the start, and insulted us repeatedly. It is disingenuous sophistry and marketing speak all the way down.

You don't get to act all high and fucking mighty about being rightly called out on it.

Put up or shut up, frankly.

[Cue accusations of uncivility, suppressing The Truth™, and how that justifies you not having to address it all. Whatever.]

@UkPoster I wonder if some of what you perceive as "general sneeriness" might be a result of the following:

Many of us are here are interested in evidence, proof, and the very high and difficult to achieve standards necessary to definitely prove cause and effect, efficacy of a proposed treatment. We are pretty uncompromising about that.

Much of what you've said seems to suggest that you think this is somehow a flaw in our characters, or a kind of Achilles' Heel that we could overcome, if we just made different choices (e.g choosing to believe that brain training works).

Speaking for myself, I definitely find the implication that my having very high standards for proving causality is somehow a character flaw quite offensive!
If that manifests as a "general sneeriness" then so be it.

Indeed. If this is sneering, then I am honoured and proud to be a member of that club. Sneer on, fellow sneerers!

Everyone I know who sees a chiropractor loves it. From my perspective, I can't be far enough away from someone wanting to "crack" my back or twist my neck or whatever.

Tried a chiropractor once very early on, under pressure from a family member, and very much against my better judgement.

Complete fraud. And a dangerous one too. So of course the local chiropractor professional organisation named an award after him.

Never went back.

I want to respond to the throwaway claim that women in abusive relationships remain in them because they are afraid of change. This is a repugnant error which causes huge harm.

All I can say is they are damn lucky they did not make that claim at a conference for professionals working with domestic abuse victims. Be lucky to get out of the room alive.

Thanks for addressing it with a dose of hard reality.

We know that it's normal for people to recover from ME/CFS and Long Covid, especially in the first years. A recovery is not an extraordinary event that requires an extraordinary interpretation. Having recovered is not evidence that a person possesses special knowledge that would make them an authority on recovery.

We're not asking for "perfect evidence" but any evidence at all.

Personal testimonials are not evidence. A person saying "I witnessed the miracle in Saint Peter's Square and it truly happened." is not evidence. Many people saying this are also not evidence.

What you need is a controlled experiment. There are well-stablished standards of what that looks like.

This.

We are not looking for perfection, we are looking for the sort of evidence required of every drug trial before it can be approved as a treatment for a particular condition.

Would you recommend a powerful drug to everyone with ME/CFS on the basis of private facebook groups where people are experimenting with it? We have seen some of that with drugs like abilify and neck surgery and poo transplants, all of which can cause harm. We rightly critique those. Criticising the lack of research evidence for those treatments is not sneering, it's a medically sound requirement for clinical trial evidence before we allow those treatments to be recommended. That's what this forum is for. Examining the evidence.

Why would anyone expect brain retraining to be recommended without challenge on this forum? It has no more evidence for ME/CFS than neck surgery.

We have had people joining the forum to evangelise about all sorts of unevidenced treatments for ME/CFS, with the same pattern of so called evidence consisting of:

1. unverifiable claims of thousands of recovered patients gathered in private online groups,

2. a made up 'science' consisting of a story cobbled together from a mix of poorly conducted or irrelevant research and sometimes some popular science books that tell an uplifting story based on anecdotes and pseudoscience, and a few clinicians making money out of the treatment. The 'science' presented to us as a list of links to articles and books telling us to read them.

3. Accusations that we are closed minded, don't want to get better, are too scared to try it, enjoy secondary gains from staying sick,

4. Pushing us hard to try the treatment, claiming it doesn't cause harm, and ignoring or dismissing reported harms.

5. Sometimes singling out members who are desperate to try anything and telling them they would be ideal subjects for the treatment (which is medical advice not allowed on this forum - if anyone receives a forum private message about treatment, please report it to moderators - it happens, including to me in the past).

Questioning so called evidence and claims are not sneering.

Excellent summary, @Trish.

 

[MrMagoo]

Yet we have also been told for decades by the psychosomatic crowd that paying attention to symptoms is a major part of our psychopathology and cause of our symptoms.

Except when it is Acceptance & Commitment therapy, in which case it is critical to it being successful.

Who need consistency? Just ask Prof. Chalder.

It is just the same old basic woo recipe that has been bobbing around for decades for virtually all medical conditions.


There is no world in which my situation could be described as 'safe'. That suggestion is just bizarre, and typical of the arbitrary theory-led evidence-free mental gymnastics of the brain retrainers, et al.

If anything my situation is getting more and more precarious as old age, and the looming consequences of an accumulated lack of social capital and decades of poverty, all compound.


Cite the hard science directly, please, from the mainstream journals. Show us you know what it is, understand it, and indeed that actually exists at all.


Bye.

Spare us your moral high ground act. You have delivered no robust evidence or argument in favour of your claim, and have instead consistently dodged legit criticism and questions from the start, and insulted us repeatedly. It is disingenuous sophistry and marketing speak all the way down.

You don't get to act all high and fucking mighty about being rightly called out on it.

Put up or shut up, frankly.

[Cue accusations of uncivility, suppressing The Truth™, and how that justifies you not having to address it all. Whatever.]


Indeed. If this is sneering, then I am honoured and proud to be a member of that club. Sneer on, fellow sneerers!


Tried a chiropractor once very early on, under pressure from a family member, and very much against my better judgement.

Complete fraud. And a dangerous one too. So of course the local chiropractor professional organisation named an award after him.

Never went back.


All I can say is they are damn lucky they did not make that claim at a conference for professionals working with domestic abuse victims. Be lucky to get out of the room alive.

Thanks for addressing it with a dose of hard reality.


This.


Excellent summary, @Trish.

Don’t worry, they all want us to believe that their interpretation of the temporal variance perception influences by the neuroplastic modulation of the Shatner’s Basson region of the brain will cure us, and if we don’t agree then can we please explain why that wouldn’t work.

Like we’ve got time to teach them GCSE biology.