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They are busy gobbling everything up. Soon medicine will be entirely FND.

Action for ME was funded by government and was not a charity where members voted every year and so on. They have had a dubious stand over many things possibly because they have been about 6 months of fatigue rather than complex ME. In the early days, it was formed because some people felt that...

Actually, children do not get enough exercise and exercise is vital for good health for humans. We evolved to be active in our normal lives, though exercise for the sake of it is a modern invention because our lives are so different from paleo times. It is important we do not argue against...

This is an example of what we are up against because of the way ME has been considered part of the fatigue spectrum. In their ignorance they take what is known about exercise in individuals with a healthy energy production system and recommend it for post viral disease. If the medical...

The problem with research into ME is that there had been little to no funding over the years. Small scale projects show promise but then are ignored. The use of the Fukuda definition with its emphasis on fatigue, then the appalling change to that by Reeves at the CDC means that it is difficult...

EBV was always known to have a prolonged course in some people, taking up to 2 years to be back to health. That was the way the common herd (us non medical people) thought of it. Saying it is ME/CFS after 6 months must be because they think of it like Oxford no matter what definition they say...

PEM was the term the CDC used when they invented CFS. It was a sop to the ME experts or something because they never looked to see what the patients actually experienced. Before that ME was seen as a disease where there was an abnormal response to exercise and symptoms varied by the hour, day...

I had an enterovirus and spent a week in bed. I recovered enough to go back to school but I was never right after that with lots of strange symptoms, probably POTS, speech and vision, homeostasis, pain and lack of stamina. The CFS being slow onset is probably because of the 6 months of fatigue...

It would be easier to get people onside too. The characterization of us as unhinged terrorists striking fear into the hearts of hero researchers whose only crime was trying to help us made it very difficult to admit to having ME. Things have improved since then. People fund raise for those who...

Patient activism has been hobbled for the past thirty years because we are not able to fight for recognition. What some patients have managed to achieve is wonderful and incredible considering much of it has been done while bed ridden. I can't be the only person to go to sign a petition or send...

Not knowing about ME, I worked out PEM by myself (as was said, in milder days) because I would feel particularly sick and ill one day and realise that 3 days earlier I had done more than usual. Once I noticed the pattern I could look out for it. Repeating myself but I think it is important. To...

I wonder if that could be because your immune system is too "tired" or damaged to work properly. Or it could be the way some research, I think on Tahoe victims, which found and overactive immune system for the first few years then becoming underactive.

The problem with articles like this and I suspect for the average medical worker is that they think our problems involve exercise. Even when I was fairly mild it was day to day living I could not manage. There is no need for us to exercise, ever. What we need help to do from physiologists and...

I have no knowledge of EDS and joint hypermobility but the other things seem to be symptoms of Autistic Spectrum disease. The autistic brain has problems with processing information and all these labels make me think of some of the articles I have read which said that the names we give mental...

I wrote this in another post. I did too much 2 days ago and now I have a look of a hamster as my glands in the neck swell up and I have swollen glands under my arms too. All this plus dizziness and feeling fluey, including a sore throat. Now PEM does not give that every time in every patients...

Meibomian gland disorders are the commonest reason for dry eyes and it can be very uncomfortable. They recommend using heat pads on your eyes to melt the dried oil causing the blockage and let it run free again. The pad needs to be warm but not near hot and even a pad of kitchen roll dampened...

I did too much 2 days ago and now I have a look of a hamster as my glands in the neck swell up and I have swollen glands under my arms too. All this plus dizziness and feeling fluey, including a sore throat. Now PEM does not give that every time but there have to be cases like that among...

Politics and medicine have become like QVC*, you have to watch for what is not being said. *they all may mean well.

They are going to keep renaming FND/conversion disorder/hysteria every time patients discover what doctors really mean by them. It is an ego trip.

Ramsay spoke about ME as a disease defined by variability over hours, days weeks and months. I felt that longcovid was like ME because they were describing the same variability. It is not the same as relapsing/remitting where it goes away for a while and comes back. I can have a very painful...