I am so sorry to hear about your situation, @Callie Arcale.
Wherever one finds themself on the spectrum of severity of ME/CFS, they are significantly disabled. Someone with so-called "mild" ME may be able to work but do nothing else than rest in their "free" time, and that is already a very difficult spot to be in. The severe, very severe and extremely severe ends of the spectrum are so incredibly disabling that they are unconceivable to those who have not been there, except for carers (at least the ones that understand ME). That speaks volumes.
With regards to biomedical research, I think there has been an uptick since the publication of the US Institute of Medicine's report in 2015 that was followed by a doubling of funding into ME/CFS research at the NIH. However, studies mostly remain about clinical observations, such as measuring orthostatic intolerance with tilt table testing or the 10 min NASA lean test and post-exertional malaise (PEM) with 2-day CPETs. What we are desperately missing is basic research to understand the biological underpinnings of the disease, and in particular PEM.
I will say about OMF that they are trying to do too much with too little resources. They list about 30 different projects on their website but they do not consistently provide updates on their progress, so we are left in the dark. Circling back to the previous point, I am sad to see that they went from wanting to collect as much biological data as possible and then formulating hypotheses off of these, to the opposite (for instance, the only grounds for the metabolic trap and the itaconate are theoretical). Alas.
I am not completely desperate about the current state of affairs, though. There have been two major advances lately.
First, the NIH intramural study, albeit small, was extremely thorough, covered many physiological aspects (79 researchers participated in the study) and has seemingly identified and detailed some problems like mitochondrial dysfunction. The results should be published in early 2023, and I hope it will bolster research into ME from other teams.
Second, the 25,000 participant strong, genome-wide association study DecodeME launched in September in the UK. Not only are the investigators very rigorous in their methodology, but among them are patients and carers who have worked hard to ensure that all patients with ME can participate easily — even the most severely affected ones. There is no better way to finding clues as to what causes ME than a properly designed genetic study because, where clinical observations may either be a cause or a consequence of the disease, DNA does not change throughout our lives so its implication in the disease can only be causal.
Those are the two hopes that I am clinging on to. The DecodeME team plans to release their first findings in early 2024, and whatever they find will lead to potential treatments. Unless my health completely tanks until then, I will be waiting for these results.
As for the biopsychosocial cabal, they have indeed been around for decades, but lately they have lost credibility. Health authorities in the US and the UK (IOM/NAM, CDC, AHRQ, NICE) now all agree that the scientific evidence they have provided (clinical trials) to support the use of graded exercise and "curative" CBT is of terribly poor quality. Even if one ignores the methodology, the objective outcomes are clear: these therapies do not lead to any improvement in daily step count (as a proxy for general physical activity), fitness, disability benefits, return to work / school.
These days, biopsychosocial advocates are just trying to hold on to what is left of their relevance by writing ridiculous "hit pieces" in medical journals that conveniently tuck the problems in their research under the carpet, or they contact journalists in their sphere of influence to do it for them. All of which get debunked as soon as they come out. Surely that indicates desperation on their end — after all, they have built their careers on this "deconditioning and unhelpful beliefs perpetuate the disease" model. The house of cards is crumbling and they're scrambling to hold the pieces together, no more, no less.
Sadly, they are why we only have pacing, rest and symptomatic medication (for pain, insomnia, orthostatic intolerance and MCAS) to date. Severe ME is even harder because literally anything makes you crash, so pacing, although an obvious necessity, fails most of the time. No wonder then that we seek the contact we crave for on Facebook groups and forums with people who understand and where we can talk about suicidal ideation. As you mentioned, it is a sick twist that we are in the opposite situation to many here on SaSu: we want to live so badly but are trapped in bodies that cannot bear the smallest bout of exertion.
ME/CFS indeed kills, and I hope this changes within the next 10 years. Whether we will be there to benefit from these potential changes is another question.