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In those faraway days it was difficult to know what was going on in the background. In even further away days in my microbiology lecturer spoke about long term effects of viral infection especially flu and glandular fever and my parents' generation accepted that it took time to get back to...

I know what you mean. It is infuriating when someone says that especially if they say they had it but they got better because of X and because they did not give into it like you :) It is a disgrace that the BPSers reduced the complex systemic disease of ME into the mish mash that is CFS. It was...

I am getting increasingly worried by the constant use of PEM as a symptom of longcovid. They do not define it anywhere so I think it most likely they are talking about malaise after exercise. "I feel bad when i exercise". the BPS people have been trying to change PEM to mean this. The original...

I'd much rather it wasn't catatonia, though I had it dismissed as that and called a classic sign of hysteria. I had wondered if it was like cataplexy as it also happens suddenly if I laugh or get excited but when I asked about that I was told disgustedly that I did not have cataplexy. I wish...

This symptom of ME should be better known as it is devastating. Tom Kindlon shared the story of an Irish patient who had a terrible time in hospital because of it and which described my biggest fear. With my ME, I do not get fatigue as such, I just stop, mid sentence, mid movement, a second or...

It is the way they use symptoms we talk about but have no understanding of what they are. It is infuriating the number of people who say PEM but actually mean prolonged fatigue or fatigue after exercise which are common to many things. The problems we have after exercise are different, even...

It is complicated by the fact that Action for ME is the go to organisation. Sharpe being based at Edinburgh and leaving at least one acolyte, Jon Stone of FND fame, in place may be a factor too.

Invisible Woman said ME has been described as being able to lift a bag of potatoes over your head once but collapse trying to lift a spoon to your mouth over and over. A rheumatologist told my MIL to make sure she moved every joint once a day if she was able so that she could keep a full...

It leaves out the most important question. Many children experience early life trauma but do not get MS so the question of why some people get MS and others don't is still wide open. Also MS is commoner in higher latitudes yet if early trauma was a cause you would expect it to be highest in...

Possibly off topic. I have known a lot of people with MS and most of them feel that a period of stress brought on their first major attack. It was not the other way round, though, of course, that also happens. My friend with bad IBS also felt it was caused by stress at work - she was forced to...

I can't read the article, but does this not suffer from the same problem that Jonathan Edwards pointed out in the physical signs for FND. People who believe in FND believe certain things diagnose it, when these are put into a calculator it is bound to make the same diagnosis with no benefit to...

A great song and dance was made about ME being the latest example of millennium fever with all of us going mad because it was 1999. Not a word said about it in 2021 when we are still here, still ill and numbers not getting less. Wessley and co made a lot of ME being spread by social media...

We can't do moderate exercise either and she must know that, so it sounds like she is the one who is misunderstood when it is actually irrelevant to what anyone is saying.

So they do not use functional to mean "software" but actually "hardware". This only goes to show that everything is not known about the physical structures and workings of the brain which makes a mockery of MUS and FND.

She said that exercise was good for everything and it has been pointed out to her that there are some conditions that exercise is not good for. She was wrong on a fact she had stated so people corrected her. I have made mistakes of fact on this forum and when people have corrected me I have...

Talking about longcovid on another thread, one of the problems with the BPS approach is that they ignore the patient's concerns for what they think is the problem, like summarising a long list of symptoms into "fatigue" I read somewhere that the problem with psychologists is that they offer...

This happened to me when I was in a neurology ward. I was so naive in those days I was shocked by it. No one wanted to talk about the neurological symptoms I was getting.

I think impact scales do not take into account the way you can struggle and still do things if you are feeling worse with ME. There is a point when you can't do anything but it is commoner to do it but just feel bad about it. When I was moderate, I often felt that ME did not stop me doing things...

This whole area is typical of the way modern life has become full of agendas rather than straightforward truth. If a doctor finds that his patients are doing better on drug B rather than drug A, especially if it is cheaper and with fewer side effects that they report, then it does not need a...

Especially nowadays when the tests for fibro have become so loose they are almost meaningless. (Doctors complained about it at the time.) More and more we see CFS and fibromyalgia treated as the symptoms of fatigue and widespread pain respectively.