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AfME have been letting down patients for years. If they want to support people with idiopathic fatigue, fine but they keep pretending they are a charity for people with a broken aerobic system ME. They should make it clear that they are not describing our neurological disease. My stomach sinks...

I will finally get my UK old age pension in November. At the weekend some friends put photos up on facebook from our schooldays. This gave me a bit of an emotional crisis as I have never answered the question "What will I be when I grow up?" Sicker than I was at 14 is the only real answer :) I...

It occurs to me that the only explanation they feel they need is that the patient has an emotional problem that can be cured by the patient accepting they have an emotional problem but no actual disease. Treated by CBT In other words they answer the question "Why does this patient appear to...

The patient is given CBT and when that does not work the medical system washes their hands of them because they do not want to get better and there is nothing more medicine can do for them; the patient knows what to do and it is up to them to do the work.

To do aerobic activity, that is shift to anaerobic respiration, healthy people go to classes or the gym, but for many of us we reach that state by walking from bed to chair. This must mean that our bodies are facing the same challenges as an athlete who over trains. They would not have the same...

This is interesting and I had not thought about it that way. Being stuck here with little to do but read, it is fascinating how much was going behind closed doors in the post war period, things that are not really in the public consciousness even today. Things like the MKultra programme were...

This is what I mean by having to distort evidence and invoke some strange new concept of disease. No one had any problem with polio being the result of the epidemic it was part of even though it was a long term issue. When there was a measles epidemic and children were left deaf or blind no one...

ME was described from epidemics which means that it is the description of an infectious disease. That can only be a physical illness. We may suspect now that it can be caused by other physical insults but if there is a physical subset it cannot be a psychological disease. Now the psychiatrists...

Of course, CFS covers so many things that it is possible to be given this diagnosis without any of the cardinal ME symptoms so CBT and GET may help them. Remember that in at least one of the CDC's phone trials some people had not realised they were ill.

Nobody we know of in the pace trial regained old roles and abilities. I would love that.

Wow, they managed to get enough bad science in there to carry on denigrating their white patients while being insulting to other races. What a talent.

Well with those sorts of qualifications he will be published in the BMJ soon.

ME became CFS and the psychiatrists took over. The researchers who had been working on me for years were sidelined and grants dried up. I know I keep harping on about it, but it looks, and is often stated as fact, that avenues like muscle and enteroviral involvement were explored and abandoned...

Convalescence after an infection (and fruit!) was still used in the 70's. I think that may have been because it was not that long since antibiotics became readily available and people still remembered how infections developed when there was no treatment except good nursing. Nigel Speight has...

I agree most of us do not get enough exercise nowadays but looking at our evolution we are actually quite strange in that regard. We keep our fitness/ mitochondria at the level which suits us right now then when we need more, exercise increases the number of mitochondria and so our fitness...

:banghead::banghead::banghead::sick:

I loved my music, was thinking about joining an amateur orchestra or open mike nights but I could not lift the weight of my flute anymore and my face drooped so I could not make the lip shape needed. Took up the whistle instead but it is a struggle and I can only do it on good days. So much for...

Congratulations, well done. Thanks for what you do for us.

The fatigue in MS is very different from the PEM that is experienced in ME, but it is like that experienced in a lot of diseases, mainly due to the struggle to do things with a body that doesn't work though there is a neurological, as they call it, aspect as well. It would be surprising if...

Oops, edited my post to add missing word. My eyes bounce from side to side very quickly for about 30 seconds then I just carry on reading. Being ill since 14 I don't know if it came after ME or not. I've always had trouble keeping to one line of text as well and often used a bookmark under the...