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At least that will leave a document trail. Thank for your efforts. I have no expectation that it will lead to even a common sense result never mind justice but I hope that history will see what they have done to us.

If it is any consolation, I am 66 and had to have a hysterectomy when I was 41. I presume I had a menopause but it was completely lost in the general MEness of the years :)

I may be reading it wrong, but if they help fight infections and help aerobic metabolism a virus that could switch them off, or an enterovirus that replicates to fill the cell but carries on living there instead of bursting the cell wall might cause a problem with aerobic respiration... ME! (not...

If only the clinics here took this approach. And my GP :)

The problem with the clinics, even when they are helpful to people in some ways is that they do not understand or acknowledge what ME actually is. I am sure that there are many people working there who are supportive and do not despise their patients, who are willing to help with employment and...

The only place you ever see such a list of diseases with one cure is on the side of the wagons of snake oil salesmen or the modern day equivalent. CBT only works for 13% and they are benefitted, not cured. If you are not one of those then, well, that's it, goodbye. How can they acknowledge...

This contradicts those papers that have come out recently which flatly state that FND is the new name for conversion disorder or hysteria. Their brain findings may be approaching a truth but they treat it all with CBT! If the theory of emotional problems was true this would work but it doesn't...

POTS is a symptom that some people with ME get because of what is gong wrong in the body with ME. People can also get POTS as a result of another disease. Even if exercise helps everyone with POTS who does not have ME it will make us worse because we have a problem with exercise.

:banghead::banghead::banghead: They find consistent biomarkers, that is physical things that are different from the biology of healthy individuals. Then they use this, and demand more research into them, to bolster their theory that the problems are caused by wrong thoughts! So if you believe...

I've finally managed to finish watching these a little bit at a time. What they describe is the closest to my disease I have come across. The suggestions are practical and many match the things I have learned through trial and error over the years. I wish I had been told them when I was first...

He wanted to do research asking people with ME what symptoms they actually experienced as that was the only way to find out what the illness actually was. He was refused and the money given to the PACE trial instead.

You understand these things much better than I do! I was using something I read. I watched the Workwell video on energy management and they say 30 seconds but it is always possible I am misunderstanding. Biology is so complex and my brain is not what it was. :)

When you move respiration is anaerobic for the first 2 minutes then aerobic respiration which is damaged for us begins. it might have been Workwell but i read that keeping things to this 2 minutes can help you do more without payback. I have been doing this when I can and it seems to work. At...

They never listen to patients so they have probably not noticed that mice can't use language.

These sort of studies worry me. They find something that is also found in psychological distress and then assume it must be caused by psychological distress when there is no evidence of causality. Since the beginning ME has been seen as a disease which has dysautonomia as part of it though the...

When a group of self proclaimed experts come along and change the definition and name of a disease at the same time so that people already diagnosed no longer fit the criteria you are bound to have more than one group. When SW and mates set up CFS in the UK, they were selecting for a new...

So tell doctors FND is a real disease and that treatments work and they will think that is a good thing. I wonder how much of the workshop was taken up with critically examining the evidence and explaining how to rule out neurological diseases with obscure presentations such as myotonic...

I remember reading that the child's mother was present when the child was in the swimming pool. I suspect this is one of those BPS things where it revolves round wording not concept. Someone says "thrown" in the pool when he was actually lowered in carefully so it is correct it is not true...

My husband hurt his back moving freezers at work in the days before health and safety. As a young male he was berated on the bus home for not standing and giving an older person a seat. If you are a respectable looking person it is worse. They would not complain to the face of a tattooed...

TRIGGER WARNING I have contemplated suicide but only as a final response to a level of pain and this is not mentioned. I have an eye condition which feels like chili being rubbed into them every time I go into REM sleep. My eye doctor referred to it as a nasty little disease and together we...