I've been thinking about why there has been a strong reaction to this article. I'll share a few thoughts.
First, the foregrounding of brain retraining in the article as something that has anecdotal evidence and the apparent conclusion that this means it should be researched, but there is allegedly patient hostility to the method meaning it can't be talked about and can't get reseached.
I think exactly the same argument could be made about any of the biomedical treatments that have anecdotal evidence but little or no research. Take abilify, dara, antivirals, hyperbaric oxygen, HELP apheresis and blood thinners as examples with their keen advocates who have either read of recoveries or experienced recovery or improvement themselves while using those treatments, and think there should be more money in research, and in the meantime those who advocate for them think people should be free to try them without being criticised or told there's no valid evidence.
None of these treatments has as far as I know undergone clinical trials for Long Covid of sufficient size and quality to enable anyone to claim they are cures or have evidence of any efficacy for Long Covid or ME/CFS. I don't think any of them even have funding for large trials.
Why is that? Could it be that the nearly 40 years of post infectious illnesses being firmly anchored by a group of psychiatrists and their followers in the psychosomatic domain, egged on and funded by vested interests in governments and health insurance to keep us classed as not physically sick, but rather to having character flaws and making ourselves sick by fear of activity or lack of resilience or malingering? As a result funding bodies have put most of what little money there is for ME/CFS and lately Long Covid research into psychobehavioural studies and treatment trials. Little or no government funded research money has gone into biomedical studies or trials for ME/CFS or Long Covid.
Psychobehavioural treatment comes in different forms of two types: the 'respectable' versions administered by health professionals such as CBT, GET and rehabilitation with a psychological component; and the 'fringe' versions of brain retraining that call themselves training rather than therapy to get around criticisms that the people running them are not trained health professionals.
Far from patients being able to stop psychobehavioural trials, CBT and its variations have been tested multiple times for ME/CFS for decades in trials large and small, and now for Long Covid too. The outcome is always the same - small differences from controls in short term questionnaires that are too easily skewed by therapist effect etc, and no difference in objective or longer term subjective outcomes compared with controls including no treatment. They don't work. If it were a drug it would have been dismissed long ago as ineffective, as indeed NICE did in 2021.
Yet despite that, promoters of psychobehavioural therapies fight on, with their power outweighting what we patients can do. Look at the just this week Garner and Chalder getting to promote this at a UK psychiatrists conference. They are not being silenced. Far from it.
Brain retraining specifically has not been tested much in clinical trials, probably partly because doctors who might carry out those trials recognise that training run by non clinicians that often is secretive about its methods and if they look closely into it makes claims to be able to treat a very wide range of conditions is not something they would get ethics approval for.
Many brain retraining providers show all the signs of being unevidenced scams - outrageous claims of cures for people with irreversible pathologies, secrecy over methods unless you pay first, only allowing people to take part if they agree not to question the methods or explanations and believe wholeheartedly it works, explanations of neuroscience that is factually incorrect, websites full of unverifiable anecotes, use of social media influencers to promote them and so on. And if you bother to look, multiple other anecdotes of harm and unethical practices. So why would any doctor take these serously enough to research them when they would see the flaws and unethical practices if they looked into them? And they would know that the already tested versions like CBT have been tested and shown to be ineffective.
There are some doctors and therapists who do use brain retraining methods without evidence beyond anecdotal, just as there are some who use the biomedical treatments I listed based on anecdote. And there have been some trials such as the infamous Crawley trial of LP on children.
I wonder how we would react if the same article were written, with emotive anecdotes and claims of harassment of researchers, if the treatment the article promoted was antivirals, or abilify or blood thinners. I suspect we would be equally critical, and talk about lack of evidence, side effects, and we would be critical of doctors who prescribe them without evidence for years without doing the research.
