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I can't remember the fine mind which pointed it out but it deserves to be repeated. If you are doing a study to see how many tall children there are in a school, you don't have to see the results to know that changing the definition of tall so that it is a few inches shorter will give more tall...

Problem with all these studies is they most likely predict chronic fatigue not ME. Chronic fatigue is not to be taken lightly but it is not the same and the confusion will not be helpful to anyone. I can see why a disordered immune system would lead to fatigue and it is an interesting study...

He was in the game from the early days. The Dubbo studies surprised me as they were so different from the shocking psychological stance taken in the writings of Lloyd and Hickie before that.

Could I just repeat a post I made. It could be a useful addition to other scales as it takes into account things others miss. My life is actually easier than it was when I was moderately affected. Standing in a supermarket queue hanging onto the counter and knowing I had to get home and unpack...

I read a horror story about a child with ME in the Australian system after being taken from her parents. It must have been over twenty years ago. Horrendous it is still happening, but Lloyd was the expert then as well.

Clonidine works by relaxing the blood vessels and may be easier to get. I found it helped me a lot. Work done in Dundee showed that patients had stiffened walls in their blood vessels, I think Paul Cheney did as well so it is reasonable to think drugs like these would help. They may not be...

My husband's lab shared a corridor with the gut microbiologists. Cultures on a small scale would make life much more ... fragrant.

The very first "Perspectives" I read (89/90 or thereabouts) had an article which talked about "The Glass Ceiling" which said that ME patients can improve their fitness but only to a certain point. This is very difficult for outsiders to appreciate. I have managed to do much more (on good days)...

There are too many posts in this thread for me to follow so sorry if this has been said. I recently read "Why We Sleep; The New Science of Sleep and Dreams" by Matthew Walker. I was very impressed by his work which is all done in a proper sleep lab. It makes sense that sleep is a dynamic...

I had a bad experience on another ME forum. We had someone who rejoined under a pseudonym and kept asking questions, demanding to know why he shouldn't have psychological treatments and criticising researchers on our side. Like others I assumed he was newly diagnosed and used precious energy to...

I have read things where it was stated as fact that the more symptoms you have the more likely you are to have a psychiatric or possibly psychological illness. The problem with that is it may work for something easy to diagnose or with a test. If it is suspected that you have an overactive...

It may not be so depressing :) Human beings have evolved to only be as fit as they need to at any given time. I can't remember exactly how the process works but if you go into anaerobic respiration (aerobic exercise) mitochondria die. The byproducts of their death are the signal to the cell...

My limitations are not due to fatigue. For instance I do art work when I can but after about 5 to 10 minutes I have to stop because of double vision, pain in my back and tremor. On good days, resting for an hour means I can do another 5 minutes. When I was still able to go out myself I tried to...

Though there are people out there who enjoy becoming another person, like acting or writing a novel. Some will enjoy getting attention and caring while others will feel a sense of power of the ones they are fooling. Manipulators are common in real life so they must really enjoy the anonymity of...

"Based on my views above, I have long thought that the ME epidemic will eventually culminate and be replaced by another, socially contagious state." This reminds me very much of the views of Elaine Showalter who had a very influential book published which claimed that ME was a fashionable way...

Yes, I am always annoyed that colds go on longer than I expect!

When I am exerting there comes a point, soon or later, when it feels as if I run out of something and I can't go on till I have it back (like visual purple). Signalling problems are just not fast enough to account for the few seconds that make movement possible again. The theory that seems to...

I read once that spatial senses are one of the first things to be damaged in the brain after something like a stroke. I don't know how true it is but my spatial sense is dreadful.

The doctors who were there at the epidemics were very knowledgeable about enteroviral disease. The key to understanding polio was that many people were infected with the virus but only some developed the complication of polio. ME was seen as a similar complication of an enteroviral infection...

His first paper was called "New Wine in Old Bottles" and he said that ME was the modern name for neurasthenia. His university website said that neurasthenia had faded since Victorian times but reemerged in the 80's. The epidemics were completely ignored. The neurasthenia link brought in the...