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I have had all these symptoms despite being a sporadic case. I can't be the only one here. For instance, the bulbar weakness with thick speech would come on when I was exhausted. After a period when this was happening almost daily I developed a slight droop to the left hand side of my face which...

What I have never been clear about is whether this statistic refers to people who have clear PEM with distressing symptoms but cannot be taken seriously by a doctor or if it is people who experience fatigue but do not realise it is a disease not just the result of social factors (like an athlete...

If I am reading this correctly they gave people a questionnaire which is used to document symptoms after you have had a concussion. If someone had more than a few positive answers this was taken as post concussion being common in the community.:banghead: I really wonder about education today...

OK, I have been thinking a lot about reference scales for illness and I have come up with this which gives another way of seeing how you fit. An important point to emphasise is that in each category you can be mild or severe and it can vary. Here goes 1. Normal health. You are not restricted...

ME was defined as an abnormal response to exercise not chronic fatigue. The CPET testing shows that cellular respiration is compromised in some way. Even now I am severely affected (unable to carry out the activities of daily living without help and spend a lot of time lying down) the disease...

"characterized primarily by severe, unexplained fatigue" I am in a bit of a relapse so I am feeling bored and grumpy but I am getting angrier and angrier about people who should know better describing our disease this way. It is an ABNORMAL RESPONSE TO EXERCISE which characterises ME...

The guidelines for blood sugar levels used by the NHS say that patients of Asian descent are more likely to experience complications so ideal levels are lower. My friend was close to a woman who had thalassemia which took years to diagnose because she was not of Mediterranean descent. These...

These case studies are very tragic for the people concerned, but unless they have the cardinal symptom of their illness flaring after exercise in an unusual manner - physical exercise giving mental fatigue and vice versa, an increase in inflammatory symptoms such as swollen lymph nodes, a delay...

Just read this thread. I have been ill since before CFS and a deep burning pain was always considered a symptom of ME, especially in the large muscles like the legs, arms and back. It comes from the byproducts of anaerobic exercise such as lactic acid. I find the best thing for it is a very hot...

Over the years, the likes of SW and PW have been quick to respond to biomedical research with justified cautions of correlation against causation, the dangers inherent in small preliminary studies and other perfectly valid things that cannot be argued against. However they do not apply these...

I seem to remember that the CDC in Reeves' time said that CFS was more prevalent in minorities, though his definition was so weak it was useless for data. The idea that CFS was a disease of white women was pushed by Stephen Strauss. Tahoe was an upscale resort which was the only reason the CDC...

I think what this is about is having what are called nurse practitioners. For instance I see a nurse every 4 months to check my diabetes. If my medication needs changed she will check with the doctor and send me a prescription so I only need to consult a doctor if something major happens. In...

I am too old to make much sense of gender issues, but what I took from the article was that his own sense of what was fitting as a man prevented him from asking for the help he needed. This is a problem in medicine. I have uncles who have died because they would not go to see a doctor. It is...

As usual I can't remember the details but statins work by interfering with a precursor of cholesterol but that precursor also either becomes CoQ10 or something else needed for mitochondrial function.

There was a documentary by Channel 4 (I think) possibly 20 years ago or more (I am not good on detail) which was about the way mothers of children with ME are investigated for Munchhausen's by proxy. One of the doctors said he had no been given enough right of reply, maybe said he was taken out...

I never meant that fibromyalgia is not agonising, only that the pain experienced in ME was minimised when CFS became all about fatigue. The disconnect with ME meant that the adverse effect of exercise was forgotten for years and the pain was not properly acknowledged either. I am sure that many...

There was no correlation between ME and fibromyalgia. In fact I never heard the term until after CFS was invented - I believe it was originally called fibrositis but I may be wrong. At the time it looked like the Americans (who ignored all we knew about ME and took Fatigue as the critical...

So much nonsense :banghead::banghead::banghead:

I have started posts here over and over, but I soon get caught in a morass trying to describe what is wrong with FND. It is like trying to summarise what is wrong with the PACE trial, where do you start? The problem is they mix in sensible enough things, like signalling problems with dubious...

This is exactly what I mean. They imply that the brain systems are working properly so our thoughts and behaviours must be at fault, hence CBT. But like your analogy the system is not working properly because things are in the wrong place when they are needed. So the answer is to take away the...