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ME was also known as epidemic vertigo. Over the years, I have suspected that CFS+FM is actually ME because the fukuda definition does not cover the excruciating pain that often goes with ME. Myalgic/ myalgia, how do they decide exactly how they differ especially since the number of points to...

It is forgotten now with all the problems with the published PACE results but while it was being set up we felt that the whole thing was designed to make sure they got the best result possible. I fully expected them to get an astounding success rate which we would have to fight by pointing out...

I saw the article on the BBC news front page at 9.45am and was surprised (astounded!) as I thought it would be another attack on ME patients. I went back at 10.15 to check some wording and discovered it had been removed to the health pages. Obviously the story that had run for 3 days about...

I can't see moving images as it is processing within the brain that is the problem, not fast enough for tracking. Double vision has plagued me since the start and I have had episodes of blindness (which may be MS) Bright lights also close down my vision for hours. It is time that more work was...

I think this could be a failure of proprioception which is not discussed in ME the way it used to be. Many of us have a negative Romberg test where we fall over if we close our eyes. In my own case it gets worse depending on how I am. At times I stumble every time I blink. If proprioception is...

I think our brain functions are on a knife edge, we manage only when things are ideal, any stress on the system knocks it over. Stimulants can be bad for ME, I think it was Dr Cheney who said that revving up a damaged system could make things better for a while but will be causing more damage...

This is not an attack on you, and I believe that you have this experience but one of the things we are up against, is that people who overuse the health service are the ones that GPs see the most, so too many people are seen as being timewasters. My father was told by a consultant that he was...

He seems to have severe mental issues and posts very strange things about numerology and medieval type alchemy stuff. He will talk about a drug or something then say the chemical symbol is like the symbol for mercury so it means it is a trap set by people who want to take over the world or...

It is very sad that so many children are too ill to attend school, however it does not give a complete picture and could skew the figures. I became ill after an infection when I was 14 but I never missed any school days because of it. I never felt I had chronic fatigue, never mentioned it as a...

He also did a study after 9/11 to show that ill effects were psychological, not the result of toxins. It said so on a TV documentary I think. He was chief psychologist or something like that for NATO. The way ME has been treated is very like the ways the CIA are documented to use to discredit...

There was an article in the New Scientist a few weeks ago about deconditioning. They said that birds "train" for long migrations by putting on fat and sitting about a lot. In humans, we seem to keep our bodies at a low level of "fitness" but when we need more efficiency we get it because the...

A while ago, a US doctor did research on GWS which showed biomedical abnormalities. I can't remember the details but it was reported in the New Scientist. They had the usual "comment" from SW. They asked the American about his view that GWS was psychological and she said "Simon who?" I loved it...

I had an OT who made all the difference to me. For one thing she pushed for me to get a wheelchair which I had never considered and which then transformed my life. She also helped me get an electric bath seat, toilet stand, stand to help me out of bed, transfer sheet, handles round the house...

The frustrating thing is that we have known what to do for years. Nigel Speight has said that many of his patients improved or recovered. The great medical secret - let people rest as much as they need. So give them advice - even call it CBT!!! - to organise their life, give them tips on how...

It may well have been a mistaken discovery, but politics were definitely involved, even if the story has been sanitised over the years. It was not the usual (and desirable) give and take of science to find the truth. It has been too long for me to remember exactly and I am too ill to search for...

Is the point not that ME patients, even if not all of them, do not have the same results on the second day? It is so taken for granted that everyone has the same results if this test is repeated that patients with heart disease or lung problems are only given the one test. While it cannot be...

I was never very excited about the XMRV research because treating retroviruses is so difficult that it's biggest effect would have been proof we are physically ill. But having said that I found the conclusions really dodgy. PCR is very dependent on conditions and no one was willing to replicate...

The mass hysteria thing was something that the average doctor thought but didn't care about, it was just a medical curiosity. A lot of work was being done in the early 80s and ME was moving back into the mainstream as it was acknowledged that it could be sporadic as well as epidemic. It had...

I think they are afraid of ME because it could be a bottomless pit as everyone feels fatigue. I've often thought it very devious that the same people responsible for redefining a specific neurological disease with a specific reaction to exertion into "chronic fatigue" which is universal, then...

Actually I think most of this thread has missed the point. SW is very, very clever. He qualified as a doctor but there are hundreds of doctors in the UK alone. No, he saw an opportunity to invent his own branch of medicine and has made a fortune out of it as well as gaining honours and respect...