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To add to my earlier post to @RedFox, learning a small bit from ME literature about how physicians assess patients' function and ability/disability, assisted me in communicating with my doctors. And in turn, assisted them. I accessed this assessment info on the advice of ME support groups, not...

Exactly.

You make a very good point. Once more information came out about ME, it helped my understanding, as well as communication with practitioners. Going through ME reference material, I have learned to explain symptoms and function in terms of categories such as Basic Activities of Daily Living...

Been there...

:laugh:

This concept has been around off and on before re ME. It would be interesting and perhaps helpful for medical science to get more to grips with this idea.

I feel positive, as yes, more info is getting out there. But I'm also still concerned, as medicine is very slow to change. What I can see is moving ahead is women's knowledge, and the awareness that they don't have to just put up with debilitating symptoms anymore. A few months ago there was a...

Institutes that require PEM as the core issue for ME; I haven't verified all of these, but it is quite probable that all of these are on board, certainly the CDC and NIH: The CDC, and NIH. Also possibly written up in the Canadian Institutes of Health Research, (CIHR) an arm of Health Canada. As...

As per the statement in the PACE therapy manual, do the authors have sufficient scientific proof that boom and bust cycles disallow desensitization to increases in activity? (For healthy people, there are methods of training that advise alternating between rest and exercise to avoid...

The authors appear to contradict themselves in saying these patients are not taken seriously enough with their condition. And yet, they also say too much attention is paid to the reports from pwME. On the one hand they seem to be saying reports from patients are very important, but on the...

ETA: Speaking of energy to properly understand, I don't know how to quote just a small bit of a Member's comments. So, this my attempt to try to get that figured out. :facepalm:

I agree with your point about assuming people will recover and just need "kind words along the way". That's what I encountered regarding ME from health care practitioners with a caring bedside manner. In our household we call this technique positive non-interventioinism (PNI). PNI appears...

Unsupportive family, friends and colleagues gaslight pwME by denying symptoms, denying the reality of what the pwME is going through. The pwME may start to question their own version of their illness. They may doubt they are physiologically ill, when in fact they are. ME is a biomedical...

Disappointed that Fukuda criteria was used. I do find Jarred Younger's work very interesting, and hope his brain imaging studies prove neuroinflammation.

Substantial misdiagnoses regarding ME vs. other diseases noted in "Misdiagnoses on a grand scale?" on the ME Research UK website. This article notes 2 studies. Several people diagnosed with "cfs" actually had other diseases. I will add the link to this article later. (Perhaps BPS practitioners...

It's amazing that "helpful hypotheses" can be generated for clinical practice and future research from low evidence studies. And, treatments be "effective" but "low evidence". (Double take, shake head again....)

Agreed. I was diagnosed in 1991. I was never told to exercise and do CBT. I never heard that this was the official guidance in Canada. All I was told was that I would recover. If I recall correctly, an official federal government booklet from about 1989, may have advised a one to three year...

@rvallee Your comment on H. Pylori sequestered in the body, and sometimes causing disease, really does show medicine has been exceedingly slow to suspect this of other disease causing entities that also lurk in the human body. I guess the logic of: If this, then this, is lost on most medical...

The voluntary and non-profit sectors are always expected to do a lot for not much compensation. Not that this view makes it right. Not at all.

Agreed. Big picture people. People who can organize data. We need more cohesiveness. And, replication of promising studies.