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The confusion brought about by the invention of CFS has been devastating for ME research and has left patients to suffer alone for decades.

PEM is not a crash with exercise, though that often happens. It is an exacerbation of symptoms with physical or mental exertion and a response to that exertion which is abnormal and not intuitive - walking can cause brain fog, doing the accounts can interfere with walking, and so on. The weird...

Not very useful, but when SW made the claim that people were advocating complete rest none of us were able to think of anyplace or anyone who had ever said that. There must have been about 20 of us in the local group at that point and no one had ever felt that complete rest was recommended. It...

No one funds anything. There have been important studies, such as the NIH research years ago, which looked at cardiac problems in ME. They were meant to be doing larger studies, then... nothing. Also, people complain that they have had blood samples taken then hear nothing more about whatever...

Years ago there were studies done that found abnormalities in the brainstem in people with ME. A healthy functioning brainstem is important for homeostasis from google "The brain stem consists of a group of structures that lie deep within the brain, including the pons, medulla oblongata, and...

There are animal models for psychiatric diseases. One of the most curious is attention deficit disorder. In Australia they had a breeding programme for police dogs, drug sniffers and the like. They needed working animals who were not easily distracted but they also ended up with dogs who could...

I think we are extremely good at processing medical reassurance - we know exactly what it is worth.

Forty years ago they used early morning urine samples to test for pregnancy as there was time overnight for the hormone to gather. Mine was negative as no one took into account how often I had to get up during the night. It makes me wonder how often our negative tests are due to the fact our ME...

The lights are the insides of an animal so rising of the lights could like hysteria, or hysteria is the only specific instance that has survived t the modern world The definition on the website is "Rising Of The Lights: Generally considered to be croup. However, the Oxford English Dictionary...

They say there is no relevant lesions. They are quite happy to diagnose FND even if you have positive signs of neurological lesions if they think they are not the "proper" ones. Jonathon Edwards gave the example of a stroke victim who has left side weakness but right side vision deficit. I see...

A lot of research is being done on dry eyes so the basic biology of how the eye makes adjustments is being worked out. It is only when you think about it you realise how much is going on. When they try new treatments they often work for a while then the body gradually resets to the previous...

The important point is that our immune systems do not work normally. Some research found that in the early years it was most usual to catch everything going then later the opposite was true. Many of what we recognize as symptoms of infection are the immune system response so it may be that the...

David Bell found low blood volume in ME patients. He gave them IV saline and they felt normal almost at once. Unfortunately the effect wore off and the treatment had to be repeated weekly. This is another area of research that was ignored rather than disproved.

Um, they say that BDS is commoner in younger women but they arbitrarily excluded anyone over 65.

If they found that physical abuse causes physical problems in the brain that are measurable then it is not a conversion disorder caused by emotional distress. So they have shown these patients have not got FND, instead they have discovered a neurological syndrome associated with physical abuse...

What people on this forum may not appreciate is the way many of the things we have fought for years are being rolled out for other diseases and are becoming mainstream. We know the promises are empty and the end result is blaming patients for their own ill health and/or making money out of them...

Gould developed pancreatic cancer which has a very short time on average from diagnosis till death. I think he desperately wanted to believe that his attitude was critical. I believe he did have longer than usual before his death.

Wasn't there a suggestion recently that Stephen Hawking had a psychosomatic disease?

I have mentioned before that the MS therapy centre I attend for hyperbaric oxygen is promoting a commercial 7 step treatment approach called "Overcoming MS". There is also an NHS approach called "Living Well with MS" which I have no quarrel with - the usual, eat well, exercise as much as you...

An abnormal response to exercise is not mentioned. In 2020 we should expect and demand that anyone claiming to be an expert, spokesperson or researcher into ME should know that. It is the defining characteristic of ME. The horrendous consequences of the arrogance of Stephen Strauss and the...