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Myalgic encephalomyelitis was a name given to an epidemic illness by respected doctors (one became chief medical officer in the UK) They chose it for a reason and it is not associated with pseudoscience or a name patients prefer because it is latinate or sounds more serious. It has a...

It may be a different symptom but people with ME often talk about "air hunger". I do not know if everyone is talking about the same thing, but I have several problems with breathing. There is the physical problem when my chest muscles go into spasms and I can feel as if I have a tight band round...

I have never seen a decent explanation for any sort of "functional" disorder. A lot of them lie along the lines of "there is no damage to the optic nerve so the blindness can't be physical" when the brain has to process what comes along the nerve so the problem could be anywhere there. It is an...

There is actually a direct thread between neurasthenia and CFS. It is that psychologists use empty theories because they cannot look at the brain the way you can look at microbes under a microscope. This was sort of OK in 1890, but shocking in 2018. We have the unreal situation where blood...

There was an article in the New Scientist about fatigue about 20 years ago. It mentioned CFS (not in a good way sigh) but was primarily about athletics. It spoke about fatigue in marathon runners who would get exhausted if there was suddenly a hill on their route but were fine if they knew it...

Years ago, I knew an old doctor who had done trials in a local Borstal where one group ate what they chose and the other followed a careful nutrition plan which led to astounding improvements in behaviour. Just another piece of research which landed in the dust and was forgotten.

I think that AFME is shockingly blind to the fact that they are continually used AGAINST us. It is all very well to sit and wait for evidence or to claim that they are into peer support but not science but over the years and especially with the PACE trial it is always rolled out that patient...

Ramsay did not talk about PEM but he did talk about an abnormal reaction to exercise. Describing the Royal Free epidemic they said that even examining patients made them sicker. There were a lot of things implicit about ME, we all seemed to be talking about the same thing in the days before CFS...

Autopsies done on people with severe ME like Sofia Mirza showed nodules on the spinal cord that could be related to herpes viruses. As usual, I can't remember the details but at the time it was said that these could well account for the fact that all sensory inputs were amplified. I know that...

Now I'm severely affected (and all this may be why:) ) but I always found walking to be quite easy especially compared with standing or a complicated manoeuvre like getting on a bus, handing over money. I've seen ME described as being able to lift a bag of potatoes over your head once but not a...

I had a terrible experience in a neurology ward which left me so distressed I couldn't bear to think about it for years BUT I felt better when I came home because for 14 days I hadn't had to make any meals, tidy up, get kids ready for school, sort out squabbles and so on. I was very frustrated...

It may just be my confused brain, but it looks like it could be 0 day max available 100% which I use because I am overdoing it so next day I only have 70% but I am not doing so much so I don't notice Then 2nd day post overdoing it I only have 40% of the original as the maximum I can do but I...

The CPET testing explained this. Normal healthy people AND sick people get their energy from aerobic respiration. It is so hard for them to move into the "emergency" anaerobic respiration they have to go to a gym. Anaerobic respiration is an inefficient "dirty" way of making energy, imagine...

Migraine has all sorts of strange symptoms so a brain disease like ME is bound to share them. I often think that the BPS theories have robbed the world of a useful tool to examine how the brain and body work because we get these things and then they go away so they could give valuable insight...

Stephen Strauss was the CDC guy who turned the world against us. He decided Tahoe was an epstein barr epidemic and when he found it wasn't he turned against the patients. He refused to admit it was ME and toured US hospitals talking about us in such a way that Yuppy flu was invented. The doctors...

I remember that round about the time of the PACE trial starting people were complaining that PW (and maybe others) listed COIs in US medical journals which had strict rules but was happy to say no conflicts in UK ones. Can't remember details though, maybe someone else can. It implies that he...

In the early days of psychology and "CFS" it was stated in different ways that patients were people who wanted to be perfectionist or something like that and when they couldn't manage they adopted "the sick role" rather than see themselves as just ordinary. I think it was Stephen Strauss who...

In Martha Stout's book on psychopaths she says people ask her how to recognise them and are surprised by her answer. She says that early in her research a psychopath told her that he always invoked pity in the normal as they then became easy to manipulate. As she says, most people go out of...

For a while, lots of my friends with MS were taking part in clinical trials. As they discussed them, it became clear that "a little bit better" is where the placebo effect occurs. None of them wanted to dismiss a possible treatment out of hand so if it did not actually make them throw up or fall...

Just read this, I find it hard to believe that the elderly would have a response to CPET testing like ME with serious deterioration on the second day. This testing is used for people with heart and lung diseases so older individuals must get them all the time. A single test is believed to give a...