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A few years ago now, there was a report in the New Scientist about research that showed physical signs in GWS. As usual SW, as leading authority, was asked his thoughts and pooh, poohed physical disease. When the researcher was asked to comment she said, "Simon who?" And it was printed that way...

The very first ME association newsletter I read (about 1985!) had an article which said that ME patients had a "ceiling" to how much improvement they could make. Some people could make a dramatic increase but then it would plateau, others were already living at their limit. I agree that the...

I enjoyed Nick Lane's book on mitochondria " Power, Sex, Suicide: Mitochondria and the meaning of life" and his other books as well. He looks at how energy is used by the cell and a lot of it felt relevant, but my brain doesn't retain that sort of information any more, unfortunately. Some...

A lot of the confusion is because aerobic activities are ones that are done after you have reached the anaerobic threshold and are respiring anaerobically within the cell. So aerobics classes are ones where you exercise so hard you exceed the oxygen available and pass your AT. The damage caused...

I have no idea what you mean. I am not being hypocritical or grasping at straws. Some things exist, what people do with those facts is another matter. A lot of people got ill with a disease (on many occasions), doctors examined those patients and decided they all had a new disease which they...

So my GP tried to do this test in her office. Sitting in my wheelchair waiting for my appointment sends my pulse up and makes me faint so when she got me to stand I only managed to do it for a few seconds. She felt she did not know enough about it anyway so referred me to cardiology. Give them...

There is already proof of infectious onset. ME was the name given to a disease that came in epidemics, outbreaks and clusters. Even CFS was invented because of an outbreak among many people at once who all appeared to have an infection. This is the exact opposite of thoughts being able to bring...

“one true infectious/sudden onset ME” I am sorry you find it a turn off, but for those of us ill since before the invention of CFS it is what ME actually is - a disease of infectious onset, often trivial or subclinical, which can occur in outbreaks. We had it then and those of us who've...

There seems to be several things being mixed together in this thread. You cannot compare ECT as a final resort with CBT given as a first line treatment. I have known people with varying levels of depression but only one who was treated with ECT. It was not offered to those who were still...

In ME, it was always known that it was exertion and fatigability that were the cardinal symptoms. When the CDC went to Incline Village to investigate the epidemic there, they somehow manage to describe the illness as fatigue lasting 6 months which is a very strange way to describe an outbreak of...

I think we can rule out thought processes as a cause of disease. Fruit flies get disease, bacteria get disease, plants get disease. I believe my diabetes was caused by years of dysautonomia which was part of my ME. I am not convinced that all these negative tests show nothing is wrong. Tests...

Only 25% of sufferers are house or bedbound and I agree that their illness will be exacerbated by inactivity, but for the rest it is different. To overstate it a bit, if you have a very inactive lifestyle you are unlikely to get PEM and that does not fit with most people with ME who continually...

There were objections to the PACE trial right from the beginning because there had already been studies done in CBT and GET and they were all flawed. We believed that the trial was being rigged right from the start to give the answer they wanted. I can't remember the details now, but there had...

After being ill with ME for many years I developed autoimmune diseases. Some I am not convinced about, Sjorgren's and MS, but I definitely have psoriasis and frontal fibrosing alopecia. You can tell it is autoimmune because there are little collars formed round the base of the hair which show...

Deconditioning is not common in ME anyway. While all this was going on, none of them actually asked patients if they were deconditioned (or even what their coping styles were). It was assumption after assumption. They said what they assumed to be true about patients, then stated what they...

Paul Cheney spoke about his heart transplant. He said that once he got his new heart it took almost two years before he felt completely well, despite the heart working efficiently from the very start. This was because it took that long for the rest of his body to recover from the previous...

Derek Pheby wanted research to be done asking people who felt they had ME what symptoms they had. Simple, straightforward, commonsense but the BPSers blocked it. Where we might have been today if someone had had the courage to fund it.

This July was the 50th anniversary of my becoming ill. As I have become elderly, more and more of my life experiences have become "history" to other people. The disease I have, and share with other people, was best described as "able to lift a bag over potatoes over head but collapses lifting a...

This is happening because of the invention of CFS. Fatigue is a symptom but has been used as a diagnosis for years now so it is no wonder that many people are misdiagnosed with it. Tragically, this includes diseases which can be treated. CFS has never been one illness and calling it ME/CFS...

I don't think there is a continuum of our disease, not with the healthy population at least. Everyone with MS has antibodies to myelin not present in the general population. How severe an individual's MS expresses is down to how many neurons are involved and which ones they are. In ME it is...