George Monbiot on ME/CFS, PACE, BPS and Long Covid

[Kitty]

What do we think of the idea a Tsar?

Depends what we think they could achieve, I guess? What most of us need is simple but radical: start offering us the same access to healthcare as other ill, disabled and housebound people. There aren't effective treatments for some of their diseases either, but they're still offered care and support.

Also, are there even suitable candidates for the job?

 

[rvallee]

This is the part that needs making as visible as possible; we knew, but decided we knew better - the absolute opposite of evidence based medicine, and paternalism continuing.

Yup. If I had enough ability to write this is probably the main thing I would focus on, showing how they have known the whole time, they freely put it in writing and even whine about how much we object. We might have no ability to do so now, but when they are discredited, all of this will be used against them and their institutions seeking huge legal penalties.

Because it doesn't just concern them. They likely won't pay a cent out of their own pockets. It's their employers and the large institutions, and ultimately governments, that systematically failed in their responsibilities that will be targets of lawsuits. They might feel like they are immune from it, but the point is that there is actually an overabundance of evidence for it, and they might also feel that science won't actually solve this, but they'd have to be giant fools to actually believe that. They simply think that whatever happens, they will be safe from consequences, and they need to be disabused of that notion. This is the only real leverage we have: there will be an after, and you will look absolutely awful.

 

[V.R.T.]

Spend millions on inquiries that will take years, put a brake on progress, and solve nothing?

If you really want change, fund research. Disease-modifying treatments are guaranteed to change things.

Yes lets have the inquiry in say a decade when we've gotten people well and there is a consensus about what MECFS is. A lumbering UK government inquiry now would be railroaded by the Wesselities and used as an excuse to delay investing in research.

Clinical trials have found improvements in fatigue and physical functioning in some people following exercise-based interventions, albeit with important limitations.​

Conveniently failing to mention those "important limitations". Those very critical limitations that collectively render the claim meaningless at best, and dishonest and dangerous at worst.

If they are so important then why not list them so the reader can judge how valid the research is the claim is based on?

The important limitations being that it doesn't f-king work.

 

[Axel]

The argument from new research is that we now have evidence of genes expressed in the central nervous system that must be causal in the development of ME/CFS. This completely transforms the scientific landsacape and gets beyond the arguent that we do not know cause or effect.

Exactly.
And they need to be able to picture what it implies when we don't know exactly what happens - in the brain and maybe elsewhere by extension, as it could as well react like a wound, and, for us, opening up for things just as trivial as sleeping, making a cup of coffee, concentrating on a calculation, watching a video or the scenery, talking, chewing, digesting…
Very, very, very far from what must actually be happening.

It’s not even a matter of gain muscle or taking deep breathes. It’s something else entirely, and they need to visualise that it is something else – and change their perception of what would or wouldn't cause harm here.

 

[Sean]

The important limitations being that it doesn't f-king work.

There is that somewhat relevant detail.

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I agree that at this stage a broad public inquiry into the whole shit show is probably premature, and hence risky, and will take too long, and that more and better targeted research funding will pay off sooner.

But a more focused limited inquiry looking specifically at the highly defamatory, decades long, well coordinated smear job, from the highest level of the profession against patients allegedly subjecting the BPS gang to 'harassment and violent threats' should take less time, and is more likely to deliver a serious blow to their credibility as effectively, maybe even more so. Plenty of evidence against them already in the public arena, including official and legal.

Very few in government or society will be too keen on defending them against an adverse finding, and it would raise serious questions about the legitimacy of their scientific claims. If they are prepared to resort to such dirty vicious underhanded tactics, then what is it that they are so desperate to hide that requires resorting to these kind of tactics? Sort of thing.

Yes, there are risks there too. Any process can be rigged and derailed, as we know all too well. Establishments rarely like to have their incompetence, indifference, and perfidy exposed, and the entire political establishment in the UK is up to its neck in this whole disaster. But I think that one will be a much safer route for a public inquiry, and success here will help justify a larger inquiry into the wider problem.

We absolutely do have the right to demand a fair hearing and appropriate redress against such vile unsubstantiated accusations. Our reputations have been ruthlessly and systematically shredded by these self-serving arse holes for decades, and they have faced effectively zero meaningful accountability for it, indeed often been rewarded for it, and it is still happening.

This is completely unacceptable behaviour from anybody, let alone medical 'experts' ganging up against an entire group of sick, vulnerable, innocent patients, who are asking for nothing more than to not be actively hurt by an incompetent health system.

I do note that it often takes more than one inquiry over time for the real story to finally come to light, and for at least some accountability to be applied. The Hillsborough stadium disaster being an example in the UK context.

This is likely to be a long term process for us. But we have to start somewhere, and the stakes are just too high to just let it slide. Besides any other reason, if this kind and degree of persistent widespread institutional failure to maintain some acceptable minimum standards is not exposed and the hard lessons from it learned, then it will inevitably happen again. Hard enough to prevent or even mitigate it with a clear understanding of events and how they came about, the consequences of it all, and where the culpability for it lies. But vastly more difficult without it.