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

[Hutan]

Ah, but you see @Evergreen it seems to be that it is a very specific fear at a very specific time in a very specific person that causes ME/CFS, even if that very specific person is not aware of the fear, and even if that very specific person had experienced all sorts of fearful situations at other times and had been fine, or indeed if they had not previously experienced any substantially fearful situations at all.

So, for the people with pre-existing ME/CFS who did not worsen during a fear-laden pandemic, it must be that they had been vulnerable at some earlier time to some other particular non-pandemic fear and now, their constrained life means that they are protected from their triggering fear. Nevermind that these people are supposedly hyper-sensitive and generally overly fearful, for some reason, they were resilient to pandemic fear.

Actually, it all reminds me very much of Tim Minchin's song Thank you God (which is about religion and has some seriously bad language, so don't watch it if you think it might offend, because it will). I think the faith healing theme of the song works very well as an analogy though for the brain retraining ideas, because it talks about the efforts people will go to cherry pick some very specific events to confirm their beliefs, while ignoring all the evidence and logic to the contrary.

Spoiler: somewhat sanitised version of some relevant lyrics

The story of Sam has but a single explanation
a surgical god who digs on magic operations
No, that couldn't be mistaken attribution of causation
born of a coincidental temporal correlation,
exacerbated by a general lack of education,
vis-a-vis physics in Sam's pious congregation,
It couldn't be that all these pious people are liars,
It couldn't be an artefact of confirmation bias,
a product of group think, a mass delusion,
an emperor's new clothes style fear of exclusion.

No, it's more likely to be an all powerful magician,
than a misdiagnosis of the initial condition,
or one of the many cases of spontaneous remission,
or a record-keeping glitch by the local physician,

No, the only explanation for Sam's mum's seeing,
they prayed to an all-knowing super being,
to the omnipresent master of the universe,
and he liked the sound of their muttered verse,
....
so, he popped on down to Dandenong, and just like that,
used his powers to heal the cataracts,
of Sam's mum..........

...
Now I understand how a prayer can work,
a particular prayer in a particular church
in a particular style with particular stuff,
and for particular problems that aren't particularly tough,
and for particular people, preferably white,
and for particular senses, preferably sight,
for a particular prayer in a particular spot,
to a particular version of a particular god,
and if you get that right.....

He just might
take a break from giving babies malaria
and pop down to your local area
to fix the cataracts of your mum.

 

[Trish]

There is a very strong bias on this forum.

This is our bias. You presumably agreed to it when you joined the forum:

We value four things especially:
· high quality scientific research, which will be necessary to produce effective treatments;
· open, critical discussion of claims and ideas;
· mutual support and respect;
· equality.

 

[UkPoster]

To try to clarify where you are coming from in this discussion, @UkPoster, I have some questions based on your posts so far. You are, of course, free to ignore them.

1. Is there somwhere online we can read your story of your own illness and recovery, or anything else you have writren or spoken about illness or treatment?

2. Are you, or have you ever been, involved in any organisation with a web presence we can review that is related to any brain retraining or related therapies such as NLP, or any organisation related to illnesses related to ME/CFS?

3. Is it part of the brain retraining you did to tell people you have recovered and to spread the word to others to persuade them to do it too, or to share your recovery story online?

4. What advice do brain retrainers and supporters give to people who found it ineffective, or made them sicker? Do the trainers carry insurance to cover professional therapy or treatment to undo the harm caused?

5. Do you believe ME/CFS is caused and can be cured by thoughts?

6. Do you believe everyone with ME/CFS
a. Is neurodivergent
b. has suffered trauma more that the population average
c. can be cured by brain retraining
d. wants to get better?

7. Do you think it is ethical for brain retrainers:
a. To claim they can cure people with a range of illnesses, without supporting clinical trial evidence
b. To charge vulnerable sick people large sums for unevidenced training
c. To give clients 'scientific' explanations not based on confirmed or relevant science
d. To advise psychobehavioural treatments to their clients who may also be suffering psychiatric problems such as PTSD, without clinical training or supervision do deal with problems that arise.
e. To advertise these services as 'training' thus trying to escape law and rules that require clinicians to be registered with recognised bodies, and require insurance.

8. Have you read, and what are your thoughts on, the patients stories of their experiences of LP on the website I linked?

9. What particular aspect of brain retraining do you think is effective for ME/CFS? Can you summarise what it involves the patient doing and what changes the patient experiences during and after doing it? Do they have to keep doing it after recovery in order to stay well? Do people relapse?

10. And finally, you claim it would not be possible to do a clinical trial.

That's not true. All it would need would be a willing brain retrainer, and a therapist doing some other therapy such as CBT or mindfulness with equal conviction it will work and with the same amount of empathy and face time to provide a control group with reasonable equipoise, a willing set of participants with recorded doctors diagnosis, and some objective outcome measures because the trial can't be blinded, such as continuous step monitoring throughout the 2 years, and followup of at least 2 years with patients undertaking not to try any other treatment for their ME/CFS apart from symptomatic relief during that time. The PACE trial did it - the criticisms are mostly about the diagnostic criteria being too broad, and the outcome measures being falsely reported, not with the trial itself.

Even without a clinical trial, a good first step would be for every trainer to undertake, and require of their clients, to gather clinicians diagnoses, and meaningful, objective outcome data on starting, during, and for at least 2 years after participation in the training, and record any other treatments and training. That includes honestly recording drop outs and failures. That data to be collected from clients by a reputable scientist with no beliefs about the efficacy or otherwise of the training. At least that would provide clues about claimed recovery rates and the extent the recovery is real and lasting for that trainer's clients.

So my question 10.
Will you undertake to ask all the trainers you know, to employ an impartial scientist to gather this data and put it on the brain retrainers websites alongside the recovery stories?

If there is no attempt to provide any valid evidence of any sort beyond online collections of recovery stories, you cannot expect us to see them as any more than advertising, of the same level a Mrs Jones and hundreds of other women like washing powder X bacause it cleans their sons' muddy football shorts.

1. I would prefer not to identify myself, as I said before. Thank you.
2. No, but I send people who want more information to people like the ATNS, to Curable, to COFFI and SIRPA and to people who work using EAET or PRT.
3. No. Most people who recover don't share their journey, they go off and live their lives. The people who do only do so because they are passionate about the thing that helped them, is my experience and seem to feel motivated by the fact they could have recovered sooner if they had had access to brain retraining. The programmes don't ask people to talk about it.
4. I can't speak for everyone but many will try to support the person, either asking them to visit their gp, to recommend them to another person who might be a better fit. Many times, the person who feels they aren't getting anywhere choses to vanish, and its a shame because sometimes sticking with the therapy helps and there isn't the opportunity to have that conversation but you can't force people. Yes, people carry insurance I believe and should do so. I don't know everyone so can't guarantee everyone does
5. No I don't believe M.E is caused by thoughts, but I believe the cure lies in the brain
6a no but many are and that can look different in different cases
b no not necessarily
c in most cases, I think its very likely, yes. I feel that because of the huge number of people this works for and who report feeling their life has changed for the better for finding this work.
d yes but sometimes people have a part of them that want to get better and a part of them that is scared to. Many people with M.E have told me that's the case for them, so I respect that this is part of things for many (but not all).

I'll try to come back to the other questions later.

 

[Evergreen]

Ah, but you see @Evergreen it seems to be that it is a very specific fear at a very specific time in a very specific person that causes ME/CFS, even if that very specific person is not aware of the fear, and even if that very specific person had experienced all sorts of fearful situations at other times and had been fine, or indeed if they had not previously experienced any substantially fearful situations at all.

So, for the people with pre-existing ME/CFS who did not worsen during a fear-laden pandemic, it must be that they had been vulnerable at some earlier time to some other particular non-pandemic fear and now, their constrained life means that they are protected from their triggering fear.

It makes about as much sense to me as if people whose ME/CFS started, unambiguously, with an infection, started trying to convince people whose ME/CFS did not start with an infection that actually, they did have an infection at onset, just think back, and if they can't remember one, then it must have been asymptomatic, and that now what we have to do is undo that infection.

Actually, it all reminds me very much of Tim Minchin's song Thank you God (which is about religion and has some seriously bad language, so don't watch it if it will offend). I think it works very well as an analogy though for the brain retraining ideas, because it talks about the

I read the lyrics. Indeed. It's the evangelical nature of it all that I find uncomfortable. It's great that you're doing well, just please don't insist that I have to believe what you
believe.

 

[Jonathan Edwards]

It's the evangelical nature of it all that I find uncomfortable.

This had come to my mind.

 

[JellyBabyKid]

Can you summarise what it involves the patient doing

Thanks @Trish, I am always curious about this, and it seem to either be "journal" and "listen to recovery stories" or here's a $400 a month plan

psychiatric problems such as PTSD

I have PTSD and have actually found adapted safety messages really helpful. Still got PTSD and ME, but not having quite so many panic attacks and flashbacks. Hypervigilance is an [expletive] and an absolute battery drainer still though.

 

[Joni]

We = the brain retraining community

I believe you mentioned hundreds of recovery stories. Where are they found? Raelan's FB page and youtube group? I've seen a lot of those. Also I've seen some on substack. One LC recovered person wrote an essay in support of the WIRED piece but did not mention she was only ill 18 months with LC before her brain retraining recovery. I find that kind of failure to mention pertinent details disingenuous, and it's common in those recovery stories.

 

[Joni]

Most people who recover don't share their journey, they go off and live their lives.

This makes me think these people you are (hearing from? working with?) have been ill for a very short period of time. And people who've been sick for shorter times sometimes recover without interventions.

Many of us who've been disabled for years upon end, and are able to form online connections, get at least a little attached to other pwME in communities. While some would just disappear without wanting to try and 'rescue' the others, a lot would stick around and try to convince others to give it a try. I would feel unethical if I recovered to not at least tell people what worked for me, and I know others agree.

Yet we don't get many of these recovery stories.

 

[MrMagoo]

This makes me think these people you are (hearing from? working with?) have been ill for a very short period of time. And people who've been sick for shorter times sometimes recover without interventions.

Many of us who've been disabled for years upon end, and are able to form online connections, get at least a little attached to other pwME in communities. While some would just disappear without wanting to try and 'rescue' the others, a lot would stick around and try to convince others to give it a try. I would feel unethical if I recovered to not at least tell people what worked for me, and I know others agree.

Yet we don't get many of these recovery stories.

Oh there are some. Don't summon Fiona.
How can Garner still be a member of the GMC? Scary that he’s allowed to practice medicine.

 

[BrokenBeaktheBrave]

Why do people who recover through brain training all seem to work as brain trainers?

People love to feel like the hero in their own story. Healing themselves with their own thoughts is a powerful narrative that compels them to proselytise.

 

[Sean]

People love to feel like the hero in their own story. Healing themselves with their own thoughts is a powerful narrative that compels them to proselytise.

I think the thing that humans most desperately want to be true is the power of mind over matter. The ability to make to make the world comply to your thoughts and desires, simply by wishing it so, by sheer will power.

 

[BrokenBeaktheBrave]

I think the thing that humans most desperately want to be true is the power of mind over matter. The ability to make to make the world comply to your thoughts and desires, simply by wishing it so, by sheer will power.

Makes sense given the common trait of this group seems to be trauma. Having a sense of control after a traumatising event must feel very comforting. In that sense I guess it was always going to end in some form of cult.

 

[UkPoster]

Really, can you put an approximate number on this?

Are these stories told before any treatment, or after?

Given that it seems that part of brain retraining is telling people they are being helped to overcome their brain's fear of activity (and implied, fear of recovery), it's important to include in such data whether the information was collected before or after treatment.

I have never, in all the reports I have read and interactions with hundreds of people with ME/CFS, come across anyone who says they are scared to recover.

It's possible that there are a tiny proportion of people with ME/CFS who are indeed scared to recover, and are therefore attracted to brain retraining to try to overcome that fear, so any sample you gather in brain retraining circles will be skewed.

Your conclusion that 'this part of things for many' has no sound evidential basis.

Doing my best to keep up with replies but bear with me if I miss anything important.

No, I can't because it's a mix of people who talked to be about trying brain retraining and couldn't face it and people who have recovered and looked back on their experience. I didn't ever keep track of numbers.

I suspect what you might be picking up on is the idea of abstract recovery (of course people want that. They're suffering) and reality. The former, people want desperately. They don't get a chance to face the reality of recovery as there is such a strong message of 'only 5% recover and most in the first 2 years.' When they do is when you see some people hesitate.

And why wouldn't they? Some women in long term abusive relationships choose to stay because humans find change hard. There are so many unknowns to face. If someone has been ill for 10 years, the reality of recovery has challenges. If you lose your benefits quickly, how do you plan on paying the bills? Who is going to employ you? What if all your friends are online and you need to tell new people you're meetng you used brain retraining (people might think you were faking, it's very hard talking about recovery). I have a couple of friends who recovered from severe M.E (both ill for decades, both housebound) and I have been on a bus with one of them and to a restaurant with another. They found it very overwhelming to manage. They have had to stagger her recovery with being around others and having confidence to go out and talk and use public transport and trust they now have the energy to get home and cook supper (which they do have, but they didn't cook for herself for 25 years). The mental shift and the changes can be huge.

It's all very easy to say 'people want to recover.' Yes, I believe you. But it's also true that actual recovery feels too much for some people, they don't have the support in place to feel they can face it. There are definite advantages to continuing your life where you know how to live it, even if it comes at a cost with feeling physically ill.

 

[dave30th]

It's all very easy to say 'people want to recover.' Yes, I believe you. But it's also true that actual recovery feels too much for some people, they don't have the support in place to feel they can face it. There are definite advantages to continuing your life where you know how to live it, even if it comes at a cost with feeling physically ill.

I've never heard anyone articulate this instinct. I'm not saying it doesn't happen, but in my personal experience in talking to many, many people, I haven't met anyone who prefers their "sick role" to getting their life back. What is the evidence that people feel this way? It seems often to be a response to those who don't report recovery from mind-body interventions.

 

[UkPoster]

I believe you mentioned hundreds of recovery stories. Where are they found? Raelan's FB page and youtube group? I've seen a lot of those. Also I've seen some on substack. One LC recovered person wrote an essay in support of the WIRED piece but did not mention she was only ill 18 months with LC before her brain retraining recovery. I find that kind of failure to mention pertinent details disingenuous, and it's common in those recovery stories.

Simple answer is they aren't found anywhere you can see them. I appreciate I'm asking you to believe me that they exist and you have no idea who I am. So you have every right to not believe me, that's fair. But once you're someone doing brain retraining, there are lots of places people are talking privately. Whatsapp, FB, private groups, there are in person groups now in the States and the UK too, many run for free by other people who recovered by the way. Lots of people share their stories online and they often share them in detail, with photos before and after to inspire others. There's a lot of support in these communities so people want to encourage others who are still struggling.

The vast majority will not share publicly now or ever. A big part of that is because they are sharing personal things and don't want to be sneered at. 'You didn't have M.E, you had mental health problems' is a common one. 'You were only ill x months is another' (and that's wrong, many have been ill for decades). 'You're a grifter.' Imagine sharing some of the most personal details of your life and your hard recovery work and then people mocking you online.

 

[UkPoster]

I've never heard anyone articulate this instinct. I'm not saying it doesn't happen, but in my personal experience in talking to many, many people, I haven't met anyone who prefers their "sick role" to getting their life back. What is the evidence that people feel this way? It seems often to be a response to those who don't report recovery from mind-body interventions.

You have your personal experience. I have mine.

What evidence? I doubt any exists in research. Doesn't mean to say it's not a real thing. You likely don't talk to many people who are facing real recovery or who have recovered. I do and have.

I know several people who actually started recovering and who turned around to me personally and said 'this is too much. I can't do it.' And they put the brakes on. I had photos of them doing things showing their recovery and their Facebook shows they were ill for years before and are ill now. Would I share those with you as proof? Of course not. That's their private business and decision and I respect their decision.

 

[Trish]

They don't get a chance to face the reality of recovery as there is such a strong message of 'only 5% recover and most in the first 2 years.' When they do is when you see some people hesitate.

I agree some of the messaging from some people gets this wrong. We on this forum generally agree, I think, that most people with post infectious illness recover within the first two or 3 years, as we have seen with long covid. The figure in the first few years is way above 5%, and that's in people, the majority of whom can't attribute their recovery to anything but time and luck. In that context, any attribution to something other than luck is probably just coincidence.

If the 5% figure is used, it's only applied to those with long term illness, and usually caveated with the figure actually being unknown, and probably significantly higher in people who got sick young.

It's all very easy to say 'people want to recover.' Yes, I believe you. But it's also true that actual recovery feels too much for some people, they don't have the support in place to feel they can face it. There are definite advantages to continuing your life where you know how to live it, even if it comes at a cost with feeling physically ill.

I can understand that it can take time for some people with good supports in place while ill to adjust to the withdrawal of supports once they recover. I find it impossible to believe that anyone who is physically and mentally healthy would go on playing the sick role for decades.

And your comment seems to imply that most people who have ME/CFS are given good financial, emotional and practical support while ill, so all they suffer is some symptoms, and otherwise life is pretty good so we wouldn't want to change it.

The reality for most of pwME I have come across is financial insecurity, in some cases homelessness or insecure and inappropriate homes, lack of medical care and lack of social and care support. For many it's a fight for survival. Your comment sounds like it comes straight from the BPS mantra of 'secondary gains' keeping us ill.

 

[UkPoster]

I can understand that it can take time for some people with good supports in place while ill to adjust to the withdrawal of supports once they recover. I find it impossible to believe that anyone who is physically and mentally healthy would go on playing the sick role for decades.

And your comment seems to imply that most people who have ME/CFS are given good financial, emotional and practical support while ill, so all they suffer is some symptoms, and otherwise life is pretty good so we wouldn't want to change it.

The reality for most of pwME I have come across is financial insecurity, in some cases homelessness or insecure and inappropriate homes, lack of medical care and lack of social and care support. For many it's a fight for survival. Your comment sounds like it comes straight from the BPS mantra of 'secondary gains' keeping us ill.

Is it 'playing the sick role?' I wouldn't describe it as that. You find it impossible and I get why but that contradicts what people have actually said to me.

Yes, I think that's a really fair point, many do struggle badly. But many don't, many at least have their basics covered with benefits and although it's a difficult and precarious life, it could still be considered safer than facing no money coming in at all. If you recovered tomorrow and you had to give back your benefits, do you genuinely know what job you'd get and how you'd have an income? Brain retraining recoveries sometimes happen quite quickly, a few weeks to a few months. Do you think mentally you'd be ready to jump straight into full time work, even if there was someone who'd employ you as someone who has been ill for years? Do you really feel confident in that?

I think there is such a thing as secondary gains, by the way, but it's not the way the BPS describe it. I think they're unconscious and based on needs around safety and care that go under someone's radar.

 

[dave30th]

You likely don't talk to many people who are facing real recovery or who have recovered. I do and have.

I would suggest you not make any assumptions about who I do and don't talk to, or have and havent' talked to. yes, I have my experience and you have yours. I haven't tried to offer rationalizations for why your reported experiences are different, and I'd appreciate that you not try to interpret or rationalize mine. You say it is easy to say, "I want to recover" but suggest that people still harbor fears of recovery. it's also very easy when someone doesn't "recover," to say, well, they really have hidden reasons they're not quite aware of or aren't acknowledging.

 

[UkPoster]

I would suggest you not make any assumptions about who I do and don't talk to, or have an havent' talked to. yes, I have my expereince and you have yours. Period. I haven't tried to offer rationalizations for why your reported experiences are different, and I'd appreciate that you not try to interpret or rationalize mine. You say it is easy to say, "I want to recover" but that people have occult or hidden reasons they really don't want to, consciously or not. I'd say it's also very easy to say, when someone doesn't "recover," to say, well, they really have hidden reasons they're not quite aware of.

Am I meant to be interpreting this as a warning? Tone is hard to judge online.