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Investigating fatigue has little relevance to ME and has held research back for almost 40years. It is nebulous and ubiquitous and of no more significance in ME than any other disease. If anything, we should have been looking at energy production and usage. Looking for long term problems from...

They get many tests to monitor progress so you would expect a large drop after doing a lot the day before to happen occasionally. If it has ever happened it has not been documented. I did not mean to imply they had 2 day tests. Just that these tests have been done in all hospitals for many...

I checked the reference for CFS. Couldn't access the whole paper but these are the highlights. It doesn't match what is being claimed here.

I don't think that is strictly true. People with cystic fibrosis and heart disease have extreme fatigue and very bad results on CPET testing but they achieve the same level each time it is done. Fatigue is no more part of ME than it is for other diseases, certainly not the central factor that...

Emotional lability is different from us being depressed or anxious. It happens on too small a scale to be picked up in trials or even doctor consultations unless we are asked. I know that I am in PEM when I suddenly get deeply depressed and anxious. A short nap can often fix it and it rarely...

I don't think other diseases get PEM the way we do mainly because I have spoken to people with other illnesses and they do not describe what I get. It may be that we all get PEM in that most of us get symptom exacerbation if we do too much but the other thigns are different. Being able to lift...

Some of it sounds like autism, but I get it as a cognitive dysfunction too. At times I just can't think. They kept trying to say it was agoraphobia but it was nothing like that. I would step into a supermarket stand all confused for a few minutes and then leave. Or wander about the town trying...

I am not sure what the quote from Ramsay is but when I was first diagnosed he was still medical adviser for the ME Association and the way I do not know I have done too much until I have symptoms 3 days later I can't remember being unusual. He never defined the disease he described it which...

I have never had a positive test for EBV.

I am overweight. Until fairly recently I had responsibility for children and I never ate anything because I fancied it just to prevent hypoglycaemia and to give a slight boost of energy for things I had to do. It was very annoying. The other problem with my weight or rather diet, is that when I...

That's interesting. So sorry your 13 year old is sick. I hope there are treatments soon so she can have some childhood. It would be good if someone out there was looking at this sort of thing. It must give some insight into what is happening to us.

This makes me wonder. What about their "rule-in" Hoover sign? If the epilepsy is organic it will be negative, if the seizure is psychogenic it will be positive but what about a patient who has both? There is a cat out there declaring prior rights! There is no mention in any of the papers...

PEM is already appropriated. BPS studies have claimed their subjects had PEM but what they mean is they get worse with exercise but that is common to many diseases. PEM as we experience it has inflammatory aspects, physical exhaustion causes mental problems and vice versa, it is out of...

I have the opposite problem. When I have overdone things badly my systolic goes up as my diastolic drops on one occasion it reached 165/52. This has happened a good few times now. I mentioned it to my diabetes nurse but she did not seem interested. Looking at google (I know...) the causes of a...

It may be a completely different system, not up to reading the paper, but accumulation of adenosine during the day is said to be what makes you drowsy so one of the processes which regulate sleep. Caffeine binds to the same receptors which is why it keeps you alert and awake.

This is the glucose tolerance test and it is the gold standard for diabetes. I used to get one every 2 years when I was prediabetic then one year it showed I now had diabetes. The brain controls the regulatory functions in the body so if that is damaged by ME or if there is not enough energy to...

Most people I know with MS believe their symptoms started years before they became sick enough to be diagnosed. Strange occasions when they kept dropping things or staggering for a few seconds.

I might have mentioned this on the thread before but I found that clonidine made a difference to me. I went from not managing to go out alone to the odd trip to the shops. I carried on with the deterioration but it gave me an extra year of independence.

It started over forty years ago when I did not understand the energy problems of ME and I became very frustrated because every time I felt a bit better and did more I would get attacks of feeling ill, dizzy and confused till I finally became completely unable to move. When I asked my GP I was...

When I am in a crash yet have to struggle to the toilet or something I begin to feel very dizzy and ill. I have attacks of POTS where my heart rate can go to 150 sitting up so my husband used an arm blood pressure machine to see if that was the problem. We found that my systolic kept going up...