[UK] A proposal for an ME/CFS, Long Covid, and Post-Infectious Disease research platform

There is one way to make this work, but it would be politically difficult: not just no biopsychosocial, but a rejection of its terrible legacy, excluding anything with the stink of it. It excludes all the bad actors, and marks off all the failed areas as off-limits.

The legacy is indisputable, it has been a complete disaster. Not just professionally and humanely, but economically as well, which is all governments are interested in. The difficulty is that the NHS, and the medical profession, clearly prefers disaster with biopsychosocial, over achieving something good without. But this is the way. Perhaps the only way.

It would take convincing enough people to want to do good, instead of bad, and getting them to understand that no good will ever come out of the psychobehavioral ideology, that if they want to help, they need to choose science and patients over egos and failed interests.

 

This is where I think something like the kind of social media campaign I talked about before - short videos where the BPS people's recorded statements about pwME and LC that show their hypocrisy and contempt is juxtaposed with the lack of good evidence for their therapies, reports of harm caused, and if it emerges as predicted, scientific evidence of abnormal pathology in pwME - could come in.

If this mysterious evidence emerges this year or next, then perhaps a campaign like this could cut through to the public, the media and those in government bodies to hold the purse strings. Well timed, and separate from this campaign or #ThereforME or anything like that, it could lay bare the toxicity and harm of BPS at a crucial time.

Even without it it could be effective.

 

A good funding panel would probably sort a lot of that out. Even if representatives of the usual suspects took part, they'd have to pull their socks up when confronted by serious researchers and informed patients.

If BPS-type research had been challenged as hard as biomedical research is, it'd never have cleared the first hurdle. Sick people with no science (or even academic) background can see how poor it is, how short it falls of what's expected. To a tough grants panel used to dissecting good bids it'd probably look like the kid who answers every exam question with drawings of ninja hamsters.

 

Beyond the letter, what is to be the pressure? Does it have a chance, this late in the day, of influencing the DHSC delivery plan surely being finalised now?
the previous ring-fenced funding for m,e was a small one off, called a “small start” by sir Hugh parry. The MRC refused to sustain it, even though both charities requested it politely behind the scenes as Is their way& sir Peter Spencer called the previous £1,6m investment “tiny compared with need” . This is different to the Medical research council strategy for tax payer funding of HIV, where funding was afaiu dedicated & set aside for it until it was assessed that the field had built up enough momentum and interest to overcome stigma and flourish unaided. I think that @InitialConditions posted that ME/CFS ring-fenced funding did stimulate research interest https://www.s4me.info/threads/1-uk-2023-interim-delivery-plan-on-me-cfs-consultation-research.34688/