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Thank you, for that :) It is so hard to get explanations that have enough detail but are not way above my head.

The only reason for increasing activity is to do things you enjoy or that relieve the pain or boredom. Too many outside people act as if it is a moral duty. Society sees being fit and active as something to be applauded. My Granny tried to spend as much of her life resting as she could:) It is...

I truly feel for you, but ME is different from all other illnesses. We are told that we have to fight, do this, do that, but ME only gets better when you STOP. This is the rest of your life to sort and it will not be a quick process but it is possible to improve. Forget about baselines and...

I do not know about definitions but when I was diagnosed about 1984 they spoke about one of the symptoms being malaise in its specific sense of flu like, or what we would now call immune activation.

I say again :banghead::banghead::banghead:

Biologically, emotions are part of the sympathetic nervous system which sends out hormones and signals that work the body without conscious involvement. It is this instantaneous reaction that gives them the loophole to fit FND but they forget that it is a circular system. Signals come IN to the...

When it comes down to it, the hardware/ software analogy is self serving. It sounds good as a concise catchphrase and has built into it the idea that CBT is a way to rewrite the software program. It leaves patients satisfied because most people don't understand how computers work anyway. And it...

Dolphin, in NHS the union rep does their ordinary work usually but if another employee wants them to go with them to a meeting they go along during work hours.

You are right. We are trying to find words for something that other people have no concept of. It is all analogies trying to relate their experience to ours. Yet it is almost impossible because what we experience is not in the normal run of things. When my husband had a bad flu we went shopping...

Strangely, being much sicker now, I have less significant symptoms. In the ME days it was always said the danger point was when you started to feel better because it was easy to do too much. We know more now so maybe newer patients are smarter but this always applied to me. Now that I can...

Um, don't most people suffer fatigue and pain after being active it goes beyond a certain level? We have had it used against us that the PEM we claim is just the normal effects of exercise if you are deconditioned. There is a chance that people with IBS feel being active is different from...

A few people have mentioned stamina in various posts and I think it is an important facet of our disease. My main symptom is fatiguability, not fatigue and I can tell how well I am by how soon I have to stop something which feels as if I have run out of stamina. I have no warning, everything as...

The idea of a ceiling effect was used about ME before CFS. It meant that people could sometimes get some improvement, with exercise or a treatment, whatever but there was a point that could not be crossed. This could explain some of the clinic things. you can maybe get a bit better and they...

Anecdote from my dodgy memory but on an early ME forum one of the members was a biker and he said that SW was obviously afraid to meet with him to the point of diving into an empty room instead of passing in the corridor :) Maybe his patients love him because he only sees the ones that will!

"Fear avoidance was assessed with six items including ‘Doing less helps symptoms’ and ‘I should avoid exercise when I have symptoms’. Therefore, the items on this scale do not simply reflect post-exertional malaise." What does she think post exertional malaise is? With rheumatoid arthritis you...

Every now and then I step back and check that I am not being blinded by bias. When I thought about it I noticed a pattern with the attacks against us. Our "side" feels that their theories are not supported by evidence and that their research is badly planned, badly executed and the findings...

A description of ME is being able to lift a bag of potatoes over your head once but not lift a spoon to your mouth five times.I remember this because if describes my symptoms so well. I was pushed to collapse by twiddling knob for five minutes! So brief intense exercise may have less...

An interesting piece which shows that the increasing simplification of medicine down to psychological factors is not universal.

That is interesting beverlyhills. The behaviour of microbes is oversimplifed because that works pragmatically most of the time. It is a pity that microbiology as a research speciality was so neglected for years. PCR has given it boost again but that has its limitations too. Epidemiology is...

:banghead::banghead::banghead: :(:(:(