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Unfortunately, that 40 years of research has had about as much funding as 1 year of MS research (maybe more but definitely not much) and much of that research has not actually been on ME but on fatigue states which may not be relevant. Also the patients being tested have been a rag tag bunch...

Myalgic encephalomyelitis was a specific disease. When the CDC sent a team to investigate the outbreak at Lake Tahoe they ignored those doctors who recognised it as ME and made up their own new disease CFS where something that came in an outbreak was defined as 6 months of unexplained fatigue...

I think if you get sore throats, swollen glands, flu like feeling or just feeling sicker, rather than just tired or exhausted, you have PEM. If you do not get that it doesn't mean you don't have it, things could be going on under the surface. What you get in ME is a different response to...

Chronic Fatigue Syndrome is a such a vague diagnosis that it can cover many things since fatigue is such a common symptom but ME is a specific diagnosis. It is only when it is used as a synonym of CFS that there is confusion. The effects of exertion we experience are not seen in any other...

Moderator note: This post has been copied and subsequent posts moved from this thread: Concerns about craniocervical instability surgery in ME/CFS _________________________________ Chronic Fatigue Syndrome is a such a vague diagnosis that it can cover many things since fatigue is such a common...

Malaise in PEM was the term used to describe that flu like feeling when the immune system is flared up. Lily Chu found that healthy people do not experience immunological issues when they exercise but we do and that is one of the things that makes our response to exercise unique. She makes a...

Shame, tragic

I think her sister has ME

And what do they mean by self efficacy?

I am sure it was in his book but do not have it close at hand but Ramsay said something like 25% of people in the epidemics recovered, 25% steadily worsened, while the rest were variable round what we would now think of as PEM or crashes.

Just a bit of trivia, but one of the epidemics was in an army barracks among male soldiers.

That is very interesting. It is another of these things that is so obvious when it is discovered that you wonder why it was never thought of before. The body must have a way of regulating oxygen in the cell. We think of ME as being a disease of energy production but the switch to anaerobic...

These are just as likely to be symptoms of ME rather than comorbidities. The association of fibromyalgia with ME only started after the invention of CFS. The myalgia which was often severe was not considered by the US doctors who saw fatigue as the main symptom so people were told they had fibro...

Neurasthenia was seen as a disease caused by the weakening effects of living in an industrialised society. The "back to nature" ideas of the early 20th century were a response to this. Walking holidays and such like were very popular. Despite industry closing down in most places the idea...

Just because you can do something doesn't mean it was easy for you. There is a dreadful assumption that if you manage something that is your ability level so they feel free to ask you to just try a bit - when you tried till you were dropping to manage in the first place. You may guess I have...

Is that not what a doctor does, by definition? My wrist joint hurts so I must have been frightened by my father grabbing me when I was 2 years old, is that what we have come to? It's the only thing that has made me feel better about fitting the definition for functional neurological disorder!

That's the Mary-Jane Willows who, when people phoned AYME to ask for advice, told them that LP was a very good treatment.

This intrigues me. I have PKD (as well as PNKD, non kinesgnic) and over the years have come across people with ME who have it as well. I also had a friend with MS who had it who was told that neurological disease can make a mild genetic case apparent. First of all, how lucky is she that she has...

No matter where you stand this is at best disingenous at worst .... well. The term Myalgic encephalomyelitis was brought in to describe an epidemic disease which had occurred in many countries going back to the 1930's. It had nothing to do with "fatigue states" any more than measles did. The...

Problems with the brainstem have been suspected since the 80s so this is very promising.