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It seems the ME/CFS participants may be doubly unpresentative of pwME given the choice to use Fukuda criteria, and the differences in blood cell percentages.

This study shows there is more to FM than is popularized in the literature. It is surprising, and yet not, how something so fundamental to health, such as difficulty eating and swallowing could be mostly overlooked.

Yes, we definitely need the what's going on underneath issue(s). It would be good to see a wrap up of studies showing similar findings in the various areas. Although, bomedical research has been blocked for so long that replication numbers are few to zero.

Thanks for this stat, @RedFox So, ME is common! (My recall is seeing percentages, but not seeing anything about where the benchmark is for defining ME as common.)

I did a 2 day CPET. I felt horrible after day 1. Several symptoms were exacerbated: fatigue of course, weakness, I became quite uncoordinated, and muscle pain really increased. After day 2, I could hardly stand up, my OI kicked in right away, and I was cognitively very fatigued. It took me about...

Absolutely, weakness. Maybe that's where the term Raggedy Anne Syndrome came from. I feel, just limp in PEM. Also, sometimes in such pain during PEM I can hardly stand it.

That would be great if we could look for the NIH publications on its intramural study to start in 6 months. I read the 6 months to a year estimate on a Health Rising interview with Brian Vastag. :)

Thanks @Sly Saint Of course (!), this declaration "cfs" is common is what the BPS Movement has aimed for, in designating ""cfs" a psychiatric condition. As in lots of people are tired, anxious and depressed from time to time. So, everyone can occasionally feel this way. The BPS group would...

It would be amazing if this depth of research was applied to ME. But, wait a minute, in-depth research has been done by the NIH, but we're still waiting to see results. It's been almost 7 years so far - the study started in late 2016. The first publication is still many months to one year away...

"Seeing a doctor", "seeing a therapist","seeing whomever", in everyday language and understanding means some kind of action is taking place. The implication is it's useful, helpful action. However, to write this up as a scientific paper without the actual methods in the abstract, other than...

Interesting the authors are saying this is a common condition. I'd have to review numbers, but my recall is CFS for any age category is not officially defined as common. Maybe, just maybe, if "CFS" was officially defined as "common", there would be more biomedical research funding for it. And...

Good point @Trish about coordinating medical education about ME. Very difficult to do though, as the powers that be still don't seem to do it. For example, the brand new doctor I talked to last summer who had never heard of ME. I wonder if he'd heard of CFS. If so, I can imagine the eye...

Good point in the article about doctors reacting to hearing about ME. I would bet they're told their medical education is thorough. I've seen various reactions including skepticism, and outrage when doctors hear there is a very debilitating disease affecting millions, but they've never heard...

Speaking from my own experience, and understanding of what went on with the two names: Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS), first the term used for the disease defined by Dr. Melvin Ramsay, was Myalgic Encephalomyelitis. Then for political, and financial reasons...

:thumbup:

I would like to know what the BPS definition of "activity" is. Do they use a narrow definition? Is it just about going to the gym, and vigorous exercise such as jogging, cycling, swimming etc.? In other words, having a sporty lifestyle. Many pwME do activities, out of necessity, and maybe for...

This is a mind over matter approach, like so many others: don't let your symptoms guide your behaviour. Except, one's legitimate symptoms may be smarter than one's belief that mind and behaviour can overcome a chronic debilitating illness.

Yes.

Thanks @Sly Saint I wonder how many of these NHS facilities need literature, and program updates - a change of focus.

The film sounds like it could be interesting. But, I don't like the idea of lumping all the conditions into one name. We need to know a lot more about each of them before we consider anything like that.