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My instinct is that rather little change will actually occur with this new administration. Most of what is being said is not because of 'beliefs'. It is just being said for the sake of sounding 'anti-elite', whatever that is supposed to mean if you are from a presidential family. And if there is...

Never heard of it. Sounds a bit like waterboarding. Tailored torture for the masochist who wants to make the most of their misery?

I Would have thought that playing with 'animal models of Long Covid' would be one of the best ways to create yet another new virus that kills 20 million people. Why do these people have no sense of caution?

It looks like ill-informed speculation to me. The only figures they quote for autoimmunity that I have previous knowledge for they get wrong. They oversimplify some important things. We have recently discussed the sex ratio for post-EBV fatigue and that may be pretty equal. ME/CFS is obviously...

Interesting that nobody has suggested hiring airline pilot associates or bomb-disposal expert associates to do the stuff that you don't need a [pilot to do.

Plasma exchange is cumbersome, expensive and never worked very well for most things probably because it has no selectivity. I wouldn't revisit it. The FcRN strategy is newer but not much better I suspect. Reducing IgG load isn't going to do a lot. But before even considering these things there...

I was interviewed by the journalist but she doesn't seem to have been interested in whether this is actually any good for patients, or honest science or anything like that.

The selling of things is regulated yes, but I am not aware of any regulation of providing things for people to try if they wish. The fact that it is almost impossible to get hold of prescription drugs other than through official channels simply reflects the fact that nobody is likely to provide...

So it isn't hard to see why this programme got nowhere. The thinking is so simplistic and even contrary to the evidence. If you fail to find any supportive evidence for a popular theory you don't just assume it must be right anyway.

I am suggesting that some underlying process gradually shifts the person's physiology into a position where an additional stimulus makes it evident. We know that disease processes can evolve silently over 5-10 year spans - that is true for rheumatoid and diabetes for instance. Longer than that...

Not necessarily. People who develop ME/CFS may be destined to develop it for reasons unrelated to viruses over perhaps a 5-10 year time window. But a virus may trip the process into action. Since people have always tended to get a virus of some sort at least every other year the rate might not...

Is there a monopoly of medicine on health issues? Plenty of non-medical people supply health solutions. If someone makes a drug they are free to give to it somebody to try as far as I know. The reason they don't in general is that they don't very much want to fork out 10 million dollars when...

I have to say that from my perspective from within one particular specialty looking out on others the NIH seems to have been impressively underachieving over the last 20 years. Add to that the fact that NIH supported approaches may well have been the cause of Covid-19 in the first place, or at...

I agree, @Andy, that the issue is not a need for guidelines but for intelligent well informed individuals contributing to fine-tuning of study design in ways that are often unique to a given study. I have no doubt that DecodeME has benefitted hugely from patient involvement!! I am not sure...

Nick is not medical and admits the limits of his knowledge if you converse with him by email. He seems to have picked up some wrong ideas - not surprisingly since HealthWatch is full of them - but in the past when I have pointed out things to him he has appreciated being better informed.

Endometriosis is female by definition so we cannot judge. But 'irritable bowel syndrome' is pretty similar and abdominal pain is dismissed as 'functional' just as much in men as in women, if not more so. I had 'functional bowel disease' on my records until I asked to have it removed. Putting...

I agree. I don't even think it is a failure of the medical profession. It is a reflection of human beings' inability to understand how little they know of other people's experiences and how ready they are to jump to conclusions about cause and effect. The BPS view is popular prejudice given...

I doubt there is any reliable evidence other that if you have met a virus before you are less likely to have trouble with that one again. I huge amount of blather has been said about this over the years. The low levels of asthma in Amesh could be due to 101 things. Moreover, I don't see it...

That seems to me to be the key sentence, and in my experience reflects Nick's humility. His arguments are not very well-informed but I have to admit to thinking that Chris also had some pretty weak arguments. I don't think prejudice against ME/CFS has much to do with misogyny to be honest. Men...

I haven't read the full article but going by the quotes and Greenhalgh's usual level of analysis I suspect a basic missing point. Patient experience of experience is undoubtable and the ultimate gold standard. But patient 'experience' of what seemed to cause what is at least as unreliable as...