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 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.