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

[Sean]

What @Trish and @Hutan said.

There is no good reason to think there is anything more to this drivel than crystal gazing or the alignment of the planets.

The biggest mistake we can make is to think that making some concessions on this stuff will somehow lead to progress, and a better long term outcome. It cannot. The advocates for it will simply take that inch and run a mile with it.

See what happened in France in the last few days. That is what we are up against.

I believe we have no choice but to stand firm. Somebody has to. The profession is clearly not up to the task of adequate self-regulation at this stage in its history.

 

[Maat]

Full Disclosure.

I have been what the West calls a mind-body practitioner for the last 24 years. Since becoming ill with a GP and clinic confirmed diagnosis of CFS under the 2007 NICE Guideline. I am, one could argue, open-minded. Indeed, that was my attitude when I attended the NHS for teaching on how to manage CFS/ME as it was then called.

I am a fully trained Traditional Japanese Reiki Master/Teacher. Master simply is the translation from Japanese of the concept of teacher.

It is first and foremost a personal practice centered around an holistic approach to inner calm. Traditional Japanese Reiki practice includes deep breathwork, meditation, placing hands on or slightly above ones own body, and noticing what happens to in form of sensations, thoughts and emotions in a non-judgemental way. There is a lot more to it, but this is not intended as a sales pitch or recomendation.

When I was working as a complementary therapist, the sessions were 60 mins and I did charge privately. As a trained teacher I offered courses at all three levels. I had to be a level 2 practitioner for 2 years before I could take the final Master/Teacher level. If offered my services free of charge to the local hospice for patients and visitors but at that time mind-body practice was not as pop culture as it is today. Added to which when Japanese Reiki was introduced to the western world it became known as spiritual healing and references to Chakras was added.

I became interested when my father was diagnosed with Cancer and was struggling with anxiety and depression. My late husband was a practicing Buddhist so I have been meditating since the late 1970s. But I knew that this would not be something my father would be interested in.

After completing my training I also attended a course for complementary therapists at what was then known as the Bristol Cancer Help Centre which covered issues such as the sorts of side effects of conventional cancer treatment so that I could have some personal understanding of what my father was going through. This never formed part of the Reiki courses I ran. In other words I did not mix and match and create a whole nwe concept. That would have been completely inappropriate.

I had a website where there were no testimonials or claims of healing or cures. No FB groups. Recommendation generally was by word of mouth and I was surprised by the number of nurses who would sign up for the courses or search engine.

I was a registered member of the UK Reiki Federation, https://www.reikifed.co.uk/

and

a registered member of the CNHC https://www.cnhc.org.uk/#gsc.tab=0

I carried Balens professional indemnity insurance as a responsible complementary therapist and a requirement of most registrations.

What Cancer Research UK say about it. https://www.cancerresearchuk.org/ab...ernative-therapies/individual-therapies/reiki

Research (such as there is)

Effects of Reiki therapy on quality of life: a meta-analysis of randomized controlled trials. Liu, K., Qin, Z., Qin, Y. et al.Syst Rev 14, 72 (2025). https://doi.org/10.1186/s13643-025-02811-5 [2026]

Abstract​

Purpose​

This review aimed to evaluate the therapeutic effects of Reiki therapy on quality of life.

Methods​

The review followed standard scientific journal practices and a systematic search of PubMed, Web of Science, Embase, Scopus, and the Cochrane Library, with a literature cutoff of September 2024, was conducted to identify relevant studies. Inclusion criteria comprised articles published in English, randomized controlled trials (RCT), Reiki therapy as the independent variable, diverse patient populations, and outcome measures focusing on quality of life improvement.

Results​

The review involved 661 participants aged 14 years and above, showing a significant enhancement in quality of life post-Reiki therapy (SMD = 0.28, 95% CI 0.01 ~ 0.56, P = 0.043). The subgroup analysis showed that Reiki therapy interventions with a frequency of ≥ 8 sessions and a duration of ≥ 60 min and acute interventions of ≤ 20 min were most effective in improving quality of life.

Conclusions​

The existing meta-analysis and systematic review suggested that Reiki therapy positively impacted quality of life. Therefore, it was recommended that patients with cancer, surgical patients, chronic illnesses, and the general population receive acute Reiki therapy sessions (≤ 20 min) or Reiki therapy with sufficient frequency (≥ 8 sessions) and duration (≥ 60 min) to enhance their quality of life.

I haven't been well enough to run courses or therapy sessions since I became a pwME, 16 years ago, although I continue to practice on myself.

Yet, here I am, still severe.

The difference is clear to see.

ETA Links

 

[Trish]

The idea that all psychobehavioural treatments and trainings are much the same and should be regarded as equally unevidenced and carrying potential for harm for ME/CFS has sort of been reinforced in an odd way by COFFI.

COFFI is the organisation set up by the BPS/CBT/GET people, including the usual list - Wessely, Sharpe and so on. It now has a consumer/patient group very actively promoting brain retraining lead by Garner, Whitfield and Symington.

Does this mean that the BPS clinicians group now backs the provision of training run by unqualified influencers? I wonder what Wessely, Sharpe, White, Chalder, and the rest really think of what people like Realen Agle are doing. Surely as clinicians they can't condone it.

 

[Jonathan Edwards]

If you read my post carefully you will see that at no point do I say that I think brain retraining is likely to work. I think people who get better when they do brain retraining were very likely in a position to get better anyway such that psychosocial input of various sorts might be associated with a sense that that is when it happened.

And I am also uncertain that the negative results of trials exclude this possibility because people who might improve under brain retraining conditions might well not get recruited to trials like PACE - remember that the vast majority of candidates for entry into PCE were rejected - for whatever reason.

I also said that I was not particularly keen on the hypothesis of a separate mechanism producing the same symptoms.

But I agree with the prior comment that we should not discount this. Aftr all, many of us can remember a prominent ME/CFS advocate who claimed to be cured several times by various unlikely things.

There is still a need to do trials to validate any treatment that might be a candidate for offering through a health service.

 

[Jonathan Edwards]

One thing I do know is that drug-induced paranoid psychosis, which involves a biological brain mechanism likely to have nothing in common with usual ME/CFS can produce a number of similar symptoms. Things may be complicated.

 

[MrMagoo]

I can find the references if really needed, but IIRC, the misdiagnosis rate of ME/CFS by GPs is something like a massive 50% when compared to specialists conducting research e.g. PACE trial, Newton et al, which themselves might not have been accurately diagnosing ME/CFS if using outdated criteria.

Combine that with how self-reported ME/CFS is significantly higher than clinically-diagnosed ME/CFS. Combine that with how roughly half of those with ME/CFS-like symptoms have an exclusionary medical or psychiatric diagnosis. Combine that with how PEM, the hallmark feature of ME/CFS, is poorly defined, detected, or recorded.

Without a gold-standard diagnostic test, the above is a giant recipe for uncertainty that any particular individual has what we conceptualise and define as ME/CFS, even those claiming to have met the Canadian criteria, NICE criteria, or whatever.

Given how the proponents of brain retraining go on about fear and anxiety as being central, perhaps a significant proportion of them really did have another undiagnosed illness that was being primarily perpertuated by psychological issues all along, which they then generalise to everyone with similar symptoms?

Or perhaps there is a more nuanced possibility. The existence of PEM makes it plausible that people with ME/CFS are vulnerable to psychological stresses, which is obviously going to be a problem for those with psychological issues. Perhaps for them, brain retraining, especially in the earlier stages of illness, removes that prognostic factor before it has a chance to make them worse in the longer term.

But despite all that, I know from personal experience, and reading about others on this forum and elsewhere, addressing psychological factors can help with alleviating the effects of said psychological factors, but they tend not to actually resolve the ME/CFS itself.



I have been coming across brain retraining proponents claim they were told to avoid PEM at all costs or decrease activity as much as possible until they basically became isolated in a dark room by choice (emphasis on the choice part).

Is this really a common thing? Who is telling them to do this? Are they being misled by randoms on the internet who misinterpreted what pacing is really about in practice, or are they exaggerating in order to cast pacing in a bad light, just as Wessely et al did before them?

There were two big studies on misdiagnosis rate.

I am one of the “misdiagnosed” in the one by Peter Denton White, who found that my GP was wrong and I had depression and Fibromyalgia.
He found a 40% rate of misdiagnosis/overdiagnosed.

Guess why I’m here 20 years later, having taken part on DecodeME…

 

[Maat]

Does this mean that the BPS clinicians group now backs the provision of training run by unqualified influencers? I wonder what Wessely, Sharpe, White, Chalder, and the rest really think of what people like Realen Agle are doing. Surely as clinicians they can't condone it.

Link to the Executive Summary of the Goldsmith Report

ME/CFS and Long COVID Recovery: The Goldsmiths Report - The Recovery Channel

ME/CFS and Long COVID Recovery: The Goldsmiths Report For many people diagnosed with ME/CFS, being told by a doctor you’ll never recover is one of the hardest parts of the journey. But a new study from Goldsmiths, University of London is challenging this narrative. The Recovery Report, a...

recovery-channel.org

The copy and paste function brought across some formatting but I'm too unwell to rectify it now. I'll try and come back to it tomorrow.

Recommenda?ons

1. Direct resources towards recovery research
Research on CFS would benefit from the inclusion of recovery, and CFS research funding
ought include recovery as an object of study. Social and cultural research could be brought
into conversa2on with psychology and other disciplines to offer a more meaningful account
of the lived experience of recovery.

The exis2ng knowledge of people who have been recovered can be studied and brought into
the realm of ins2tu2onal legi2macy, along with exis2ng non-medical approaches to
recovery. Non-medical approaches to recovery should be explored through pilot studies. The
experiences of those who have recovered should be objects of research in their own right.
People who have recovered ought to be included as stakeholders in (1) news media, (2)
research, (3) health policy and (4) pa2ent support and advocacy.

The focus on a pharmacological solu2on should be held in balance with the evidence of
recovery—not only in the recovery community but held in wider society.

2. Share recovery stories wherever possible
Social and cultural evidence shows that hope is a vital resource, communicated effec2vely by
first-person accounts of recovery. The public sector and pa2ent support groups should share
stories of recovery and send posi2ve messages of hope to people who are unwell.

3. Work with non-medical prac00oners
If, as these findings suggest, non-medical recovery prac22oners are leading the way in
knowledge, support and understanding, they should be brought into the research,
policymaking and public conversa2on about CFS recovery. Non-medical prac22oners could
be invited to work alongside policymakers, healthcare providers and pa2ent support and
advocacy groups. Social and cultural researchers and prac22oners of the arts and humani2es
with an interest in health should also work alongside non-medical prac22oners.

Clinicians who wish to refer pa2ents to holis2c, mind-body or non-medical support should
receive public health guidance to do so.

Public health is recommended to play a role in suppor2ng professional standards and
iden2fying other measures to generate public trust, to help guide people whose experience Recovery Report—Execu/ve Summar

Non-medical prac22oners with a track record of suppor2ng people to recover ought to be
included as stakeholders in (1) news media, (2) research, (3) health policy and (4) pa2ent
support and advocacy.

4. Give primary care professionals a voice
General prac22oners and other primary care professionals should have a voice in how
policymakers and pa2ent support and advocacy groups understand the experiences of those
who develop symptoms and then go on to recover.

5. Stop associa0ng CFS with non-recovery
If, as these findings suggest, recovery from CFS is not only possible but prac2cable with the
right support, guidance and condi2ons, non-recovery must lose its pride of place in the
public conversa2on about CFS.

No one can know if, when or how each and every person with CFS will recover. What we can
know is that in its current usage, the message of non-recovery causes harm. Associa2ng
non-recovery with CFS obstructs improvement by ex2nguishing hope. Obstruc2ng even the
smallest improvement can have the effect of stealing a person’s whole chance for recovery.
Every clinical encounter maZers.

If, as these findings suggest, recovery stories are key to the collec2ve ar2cula2on of recovery
and can catalyse individual recoveries, then their silencing is a major social injus2ce.

Claims regarding non-recovery are not supported by good research and should not be used
to discredit, misrepresent or vilify the accounts of those who have recovered.

Conclusion
The recovery interview is a lynchpin and mobilising force of digital recovery culture.
Recovery stories foster belief in recovery and offer prac2cal advice. They reveal a collec2ve
intelligence and know-how, and they epitomise the values of community and pedagogy that
are central to digital recovery culture. They also suggest a prac2ce of mutual aid within the
recovery community. The popular appeal and impact of the YouTube recovery interview
points to the value of recovery stories more widely.

The Recovery Report is a catalyst for further research and an invita2on to doctors,
policymakers and pa2ent support and advocacy groups to engage with those who have
recovered. It claims, unequivocally, that the experience of recovery is paZerned, and the
thema2c paZerning of recovery narra2ves provides one way of learning about what makes
recovery possible.

 

[skronen]

Some people do recover at a time when they are engaged in these techniques but I think there is ample room for explaining that without needing the technique to cause the improvement. As has been pointed out there are tens of millions of people who think they have benefited from chiropraxy in the Western world and so a few hundred thinking brain training worked is no big deal.

But, I do agree with the thought that we should not dismiss the possibility that something more complicated is going on.

Which raises a thought about something we have discussed off and on - that there might be a group of 'others' who get diagnosed with ME/CFS and report the same symptoms, it seems, yet this group has a problem that is reversible in a way that members' here ME/CFS is generally not.

I am not particularly in favour of this hypothesis but wonder if there is a way to explain it in physical terms. My investigations of how brains think has led me to understand that neurons in various parts of the brain all receive rich inputs of information about the world or oneself or oneself in the world or whatever, at all sorts of different levels, for different usages. (This is neurobiological fact but few people seem to acknowledge it.) Our conscious thoughts appear to be based on the inputs to certain high level neurons that may be in the cortex but might be in thalamus or caudate or even cerebellum.

Let us say that you get a diagnosis of ME/CFS if the information coming in to these 'me' cells contains all the horrors of PEM and exhaustion and so on that are reported. If so, it is more than likely that the mistake that sends this information in is occurring somewhere else. It may be in the immune system or it may be in this or that other bit of brain.

Let us say that the conscious story of ME/CFS is in some cortical cells, maybe frontal cortex. And for members here let us postulate that it arises because of errors in pathways in dorsal root ganglia or cerebellum where CA10 and BTN2A1 hang out. But then let us say that you can also get similar rogue information generated by errors in cingulate gyrus or amygdala.

The next thing to suggest is that a loop involving amygdala or cingulate is open to psychosocial input. But the DRG or cerebellar errors are completely below this level of input and untouched by it. As a trivial example, you might shed tears when watching a film and if you turn the film off you stop crying. But if you shed tears because you are in a room full of ammonia that doesn't work.

One would think that there ought to be some simple way to distinguish the two situations and separate ME/CFS from this other problem. But my experience of people who believe they have diseases they do not have suggests that the distinction normally rests on physical signs - for which there aren't any in ME/CFS.

The implication of all this might be that rather than deny that anyone could possibly be cured by brain retraining it would be better to say 'OK, your sort of problem might have responded but what makes you think that most diagnosed ME/CFS is like that?'

This makes some sense to me. Another way of saying that, or I'm completely misunderstanding or disagreeing with you, is that a small subset of patients might be amenable to these types of interventions under the right (and often unachievable) circumstances. I'm not saying that's the case, I'm just saying I don't feel entirely comfortable dismissing all these people saying stuff like this has helped them.

Another complicating factor is programs like DNRS don't just try to treat ME/CFS but all unexplained chronic illnesses, so that makes for a much larger pool and therefore a larger group of potential responders. I hope I've made it clear I'm not endorsing any of this.

 

[skronen]

I don’t think we have any reliable evidence at this point that brain retraining is good for anything.
Neither studies showing effects nor how it could work on a theoretical level.

To be clear, I do think most of these recovery stories are probably due to either natural recovery or psychosomatic issues. From reading through this thread and others that does seem to be what many of you think, maybe I'm totally misreading? You can point toward the lack of evidence (and you'd be absolutely right to!) but it does seem like a phenomena -- brain retraining people claiming full recovery -- that requires some sort of explanation, otherwise we wouldn't be wasting energy trying to explain it.

 

[skronen]

Thank you very much for sharing. A lot of these programs are secretive. Us on the outside frequently don’t know what actually goes on in these programs.

I’m really sorry if this comes across wrong. I really don’t want to minimize what you’ve done to get better as many people who try these programs are desperate to get better. But man, that just sounds like my theatre classes on Zoom in 2020. It’s so funny to me. I so often walked around my room in circles being told different speeds or emotions to do. I can’t imagine doing circles in my room again as a kind of recovery programme. I would just start laughing from the memories. What a crazy concept.

Doesn't come across wrong. It is like a bizarre kind of theater.

 

[MrMagoo]

Let’s just have a quick rundown of brain training
-claims to cure a number of illnesses including
fibromyalgia
Long Covid
chronic pain
Lyme
MCAS
Autonomic dysfunction
Depression
Anxiety
Chronic fatigue (including MS and cancer related fatigue)

Therefore it question is not “how does it treat ME” but “how does it work so that it can successfully treat these unrelated illnesses?

So there’s really no need for this community to tie itself in knots to see if it helps with ME. Maybe it does, maybe it doesn’t.

We don’t know and more importantly - neither do they.

More to follow…

 

[richie]

The implication of all this might be that rather than deny that anyone could possibly be cured by brain retraining it would be better to say 'OK, your sort of problem might have responded but what makes you think that most diagnosed ME/CFS is like that?'

My thoughts exactly. The traditional way of dealing with this question is "Well that's not ME", which is fairer if another diagnosis is plausible (as in my case now ) but is unfair where there is no apparent comorbidity/alternative diagnosis and the symptoms are ME consistent (as was my case).

But it all comes back to believism. They will not be objective as it undermines the power of their approaches. Thus they relativise the term "recovery", present any failure as a failure of practice rather than method and so they can remain abidingly optimistic about their methods. The optimism feeds belief/confidence/hope/faith and thus will feed recovery. And if all else fails and redefining recovery and talk of trying too hard and not trying enough become embarrassing, they can resort to "not ME". in which case they may well agree with us but want ME patients and concept for themselves, so they might never say so.

 

[rvallee]

The Recovery Hub:
'To continuously aim for ‘full-recovery’ can be exhausting in itself. It can also be a continuation of the attitudes that got us there in the first place.'


So what is it? - Aim for recovery, but not continuously cos that can be exhausting - and continuously aiming for full recovery can involve repeating the 'attitudes' that (according to The Recovery Hub) made you sick in the first place. ?????

Please make it make sense.

Ah, the depressed Marge Simpson standard: "Listen to your mother, kids. Aim low. Aim so low, no one will even care if you succeed."

 

[richie]

Let’s just have a quick rundown of brain training
-claims to cure a number of illnesses including
fibromyalgia
Long Covid
chronic pain
Lyme
MCAS
Autonomic dysfunction
Depression
Anxiety
Chronic fatigue (including MS and cancer related fatigue)

Therefore it question is not “how does it treat ME” but “how does it work so that it can successfully treat these unrelated illnesses?

So there’s really no need for the community to tie itself in knots to see if it helps with ME. Maybe it does, maybe it doesn’t.

We don’t know and more importantly - neither do they.

More to follow…

Imo they probably reset the autonomic system from which benefits flow if the patient is amenable, if the patient has a primary problem with the ANS and esp. if psychological issues undergird these problems. Nothing buttery since positive mindset helps and some people respond to a hotter gospel.

 

[MrMagoo]

Brain training and CBT

We know that NICE has guidance on CBT for ME in NG206

“…may help them manage their symptoms but it is not curative” — NG206, recommendation 1.12.28

“[CBT]…does not assume people have ‘abnormal’ illness beliefs and behaviours as an underlying cause of their ME/CFS…”
NG206 recommendation 1.12.32

NG206 also specifies that The Lightening Process is not to be offered to pwME.

In fact I can see why Garner is always dunking on NICE, the additional notes, evidences and discussions are even more relevant as to why the CBT recommendations were made. The whole thing is a treasure trove of reasons against the sort of stuff the Choo-choo brain train lobby are pushing. I’m sure they are reading along and taking notes! Choo Choo!

More to follow…

 

[MrMagoo]

Imo they probably reset the autonomic system from which benefits flow if the patient is amenable, if the patient has a primary problem with the ANS and esp. if psychological issues undergird these problems.

Maybe. Opinions are fine. Nobody knows for sure.

 

[rvallee]

The mantras you repeat are 1: you say stop stop stop or change change change while smiling 2: you say my brain is stuck in a rut and it's sending my mind and body false messages (you're supposed do some gesture with each mantra) 3: you say due to over-firing of protective mechanisms in the limbic system, I had symptoms that in the past led to unhealthy coping behaviors (mouthful)

4: you say but now I know that is all due to cross wiring in the nervous system and I am choosing to rewire my brain 5: then you step into your "higher self" and tell yourself you're doing a great job and to keep going 6: you thank your limbic system for all its done for you so far but then say honey you were working with the wrong information and we're running a new program now.

7: you step back into your higher self and ask how you are choosing to be now 8: then you repeat your proclamation which goes something like "I am happy and healthy and strong everywhere all the time forever." Then steps 9 and 10 are the past and future visualizations.

- The Aristocrats
- Evidence-based medicine

This is insane. It's far more insane that medicine is not only peddling this stuff, but asserting that it's superior to medical science. This is enough to drive people genuinely insane. This is the future of medicine in the hands of people. It's beyond obvious that AI will need to fully take over this entire profession. It's as imperative as how computers had to take over communications, it just crossed the limits of what human minds can handle.

 

[richie]

Maybe. Opinions are fine. Nobody knows for sure.

I agree. Another version might be nocebo vs placebo Degrees of functional symptom amplification as nocebo mechanism responding to a placebo. Very difficult to subject to analysis, I would think, but any scientific sounding talk aids the placebo.

 

[MrMagoo]

Something interesting occurred to me in looking at a few of these websites

They sometimes point to Lightening Process, we already know what NICE NG206 says about that

They sometimes point to Curable. This app is often recommended by the NHS…for chronic pain. There was a small study which showed some benefits in managing…chronic pain (have not read it myself.

Curable themselves don’t claim to treat ME/CFS.

So let’s just see how much creep there is with brain training.

- It treats lots of conditions not just ME
-there’s lots of iterations and versions, including curable used by the NHS (for chronic pain) and Lightening Process (not recommended for ME by NICE)

So what we have is it that some versions of it might treat people, who might not have ME. But the evidence of “so many recovered” is diluted by it being used in different diseases, for different reasons.

Which is fine, but you know, on balance there’s no good reasons or evidence to recommend it for ME.

There are however reasons to not recommend it based on NICE

More to follow

 

[Trish]

Some people in the Rituximab trials recovered, both in the treatment group and the placebo group.
Some people in the NIH study that didn't involve any treatment recovered,
Some people recover spontaneously.

I don't interpret any of those people as therefore not having ME/CFS, I interpret them as among the people who recover for no known reason.

I apply the same logic to some people who use brain retraining recover.

None of these recoveries is evidence that it was a particular treatment that cured them.

So we need clinical trials for brain training of the same rigorous standard as the Rituximab trial.