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They use standard terms but give them a different meaning to make it seem like we are complaining about nothing. When the PACE trial was questioned they said that by "recovery" they meant "recovery from that particular episode" despite the usual meaning of recovery being no longer ill and their...

I have read a few things recently, both in articles and novels, which I have found appalling. They go like this - someone has become addicted to antidepressants or painkillers, they tried to get "clean" but kept relapsing because the pain or depression returned when they stopped the drugs. That...

She said it was down to hysteria about the millennium and seemed proud of the fact she did not look at any medical evidence. The millennium came and went, ME/CFS still affects millions and there has not been a peep out of her!

It is not "boom and bust" at all, even though that is what the psyches keep insisting (they distort terms all the time so it may be used differently by brain injury specialists) so it is our fault for becoming deconditioned but our fault if we get worse with their GET because we have been stupid...

The CDC were the authors of the confusion surrounding ME and made the lives of patients hell for decades. They have made some changes to their stance but they are not our allies. Anything they have got right is because they were forced to change, not out of goodwill or a desire to do the right...

We are having to reconsider disease caused by parasites. The insights into infectious disease from nineteenth and early twentieth century researchers were stunning and led to a miraculous release from the burden of infections - to the extent that people have forgotten how devastating they can be...

I have a rollator, bit more expensive but good if you have other needs. OT gave me a perching stool but I have a narrow, galley type kitchen and it was just in the way and too heavy to move easily, also found the same problems as Kitty. Coincidently, I got the rollator just as I gave back the...

Just seen this thread and it touches on things I feel very strongly about. I have some tangential experience with abused children. In some cases they have learnt the consequences of talking are so bad they chose to say nothing. This becomes worse when they are questioned about their home...

It sounds as if they are using ME/CFS to mean chronic fatigue. That was always the danger with changing CFS to ME/CFS without emphasising that chronic fatigue is just a symptom, not the disease. This is just more confusion from the way the psychos redefined ME as a disease of fatigue then...

Another frustrating piece of research. I worry that it will seem like common sense - look at symptoms then treat them - so any criticism by us will make it seem we are antiscience just like they say. The only way to get by with ME is to become your own doctor. With no medical input, we need to...

Have school nurses not gone the way of the dodo? Never heard any of my grandchildren mention one.

I can't decide of this is confused, naive or plain lying to make the diagnosis palatable by saying something the patient will believe means one thing while the doctor means another. FND is said to be an "opt in", accurate diagnosis which has a specific cause; that is a disordered nervous...

I attend a local MS clinic. Before the pandemic they became enthusiastic about a program called "Overcoming MS" There was a diet, supplements, advice on exercise and so on. Separately, there was NHS stuff where Rona Moss Morris was involved. (Think she is involved in RA as well) Anyway, the...

Armistice is in November, the heating would have been on so a low level of carbon monoxide is always possible. I never felt any anxiety about fainting because I thought it was a normal. I grew up in a newly built housing scheme and until the new church was built we had Mass in a small convent...

The problem with this is that epidemics started in the 1930s, if not before. There has been a continuity and overlap of patients since then so it is not a different disease.

I don't think it is individual doctors as such. They are presented with "evidence" outwith their speciality and believe it. The whole idea of evidence based medicine seems self evident and they do not know the evidence is not trustworthy. What is wrong is that the research side is presenting...

Sharpe was at Edinburgh University for a while. He published the first FND paper with Jon Stone, who was still at Edinburgh last year, in 2008. Though the idea of psychologically induced neurological disorders predated this, the flood of papers since then have moved it into the mainstream and...

Exactly. yet the likes of Peter White are still insisting that since their PACE trial (erroneously claimed to be an RCT) did not show evidence of harms the claims from thousands of patients are not scientific. And completely missing the point that a trial based on asking patients to fill out...

I have been reading these twitter threads with great interest. He says then goes on to explain why. Also He says Eye opening

This is a tactic they have used before and the FND people have used to legitimise their theories. There is now a paper with this title and backed by this number of scientists which will never be read but can be quoted forever. If the journals were not corrupt this would not happen as such...