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They start off in the background section talking people with psychotic diseases having poorer physical health than average and that is a clear and valid concern. It is true for all mental diseases as well as learning disability and autism. There are barriers to physiological medicine that need...

Alcohol intake, drug use and smoking all involve a behavioural component which, surprise, means changing behaviour can help. Being in extreme pain is not a choice, neither is being unable to breath or having dysautonomia! A complete non sequitur. I am also dubious about any clinical trial that...

So where is the research to show that people with ME, CFS or longcovid are lacking in motivation to get well again? If people who have not recovered from covid did not want to get their old life back they would not be going to the clinic. :banghead::banghead::banghead:

I can't find the post again, sorry but someone said they are feeling angry these days. I feel like that too and I realised it is because these people are showing so much ignorance of what ME means. They make statements about us, make decisions and decide what is important but they do not know...

Moderate exercise is just as bad for ME as any other. There is no blanket level of exercise that is good or bad for people with ME. The point they do not seem to be able to comprehend is that a person with ME must keep exertion under a varying limit that would cause damage to their body. So any...

So they are saying ME is not post viral despite the fact it was named for a disease which was a long term consequence of epidemics. How ignorant these people are. Also Longcovid is valid because the onset is fixed but ME isn't because the cause has not been found. This despite many other...

That will be exactly like MS then? Though it is called remission and doesn't last. And where did he get the impression it is usually not perpetual? Research has found that only about 5% recover and those in the early years. When people who are totally ignorant about an illness they should keep...

You have captured the basic, dreadful, unscientific ghastliness of what we face. "Current physiological illnesses" indeed! They do not believe ME to be a physiological disease so there is nothing to explain the fatigue! I do not believe that arsenic is poisonous so the victim must have died...

I get swelling. My stomach looks as if I am pregnant and goes hard as a drum and I put on about 4 lbs. I also get swelling in my throat, lips and nose. Many years ago I read a report or research that said that people with ME can accumulate interstitial fluid which gave me a cause for what happens.

From memory, a researcher from the University of Hawaii worked on this but also the NIH or someplace like that. One of the problems was he called it ciguatera while the other papers spoke about anticardiolipin. It was very exciting work but just seemed to fade away. When the doctor died no one...

So longcovid is real because it is a set of symptoms common to patients who all had the same infection. That would be a description of the Royal free outbreak and other epidemics that led to ME.

The virus will never go away now so the hope is that vaccines will help stop people getting infected so the likelihood of meeting someone excreting virus will become low. People with ME are vulnerable to all infections as they carry the risk of the disease becoming worse so it makes sense to...

I am not convinced there was not enough good quality proposals put to the MRC. Derek Pheby asks for money to ask people with ME what symptoms they experienced which would have given us data as a start. Also, the research they funded was of poor quality. They awarded a fortune to the PACE trial...

Definitions are useful up to a point but mainly for legal reasons, not everyday life. We all know what is a lorry and what is a car but a definition is much harder and there is always a grey area at the edges. Cut off points are always dangerous in medicine. You have a disease with a reading of...

A friend has something that could be called this. He fell down a flight of stairs about 10 years ago, banging his shoulder against a wall on the way down. Since then he gets painful episodes now and again. His shoulder gets very painful his hands swell to twice their normal size and turn blue...

Medicine can only use anecdote as a starting point for further investigation. In the 70s anecdote suggested strongly that plentiful vitamin C in pregnancy prevented spina bifida. The results were so obvious that it was considered unethical to run a proper RCT. The controversy carried on for a...

Again my memory has failed me, but I believe that there was a discussion on an ME forum about whether having another infection can make ME a bit better as well as worse. If the immune system is revved up and people are forced to rest it could happen. Also if the idea of being stuck in dauer is...

I've remembered that its generic name was mefenamic acid. Ridiculous that you had all that pain but no one did a laparoscopy to actually look to see what was happening!

I don't remember the MRC ever being much use to us, at least I was never excited by anything they came up with, I would remember that. At one point money was available for research but it was used for BPS stuff and things like fatigue in liver disease, nothing that we wanted. Everything was...

In the 80s there was a category for getting free prescriptions which was "unable to leave house without help". This with the proviso as in Disabled Living Allowance "even if that help is not available" seems to cover a lot of the problems. It is the loss of independence that is the main factor...