Search results

This article is indeed eye-opening as @EzzieD days. Appalling, really, what shenanigans can go on. And, not just what we have seen in non-biomedical ME research. It's now less surprising to me why science usually moves so slowly.

Interesting what the article said about peer review being non-adversarial, and not set up to catch fraud. As for it being non-adversarial, in the specific case of biomedical ME research applications, there may be examples to the contrary.

I have also wondered if a history of antibiotics might be a factor. But, I also think given that antibiotics were handed out like candy in my formative years, and even much later than that, likely the majority of people have had them. However, perhaps amount and how frequently used might be...

Thank you @dave30th Your work has made a huge difference to our community! :thumbup:

:thumbup:

Yes, I would too.

Yes, powerful symbolism. ETA: would make a good documentary

@josepdelafuente Here are the links to the documents I noted above: https://www.mefmaction.com/images/stories/Overviews/ME-Overview.pdf https://www.mefmaction.com/images/stories/Medical/ME-CFS-Consensus-Document.pdf https://me-pedia.org/wiki/Institute_of_Medicine_report ETA: It's difficult...

Aside from the question of a definitive biomarker, or biomarkers, there are suggested tests that may indicate abnormalities, but these are not of course recognized biomarkers of ME. As others have said, there isn't a recognized biomarker for ME. Also as others here have said, exclusion of other...

Good article. Unusual, thoughtful, and important point of view, that is, to follow up with members after the protest. What a good idea! :thumbup::thumbup::thumbup:

Thank you @Peter Trewhitt for noting remission can mean partial remission. I think that many pwME always have some level of symptoms, with perhaps some exceptions to this.

Yes, definitely. The term "fluctuation" is a much more accurate description. It seems relapsing/remitting is too dramatic a picture of what happens for many pwME. The article may give readers the impression that health for pwME is good, or at least normal for significant chunks of time.

"Chronic Fatigue Syndrome" is not just fatigue. Chronic fatigue is chronic fatigue, without the syndrome bit. When will researchers, and pretty much everyone else understand this?! (I think I know the answer to this...:banghead:)

"Variable" is of course subjective. My ME varies just a very few percent either way, in the worst moderate to low severe category. We need biomedical testing - more accurate, more frequent, more available, and covered by government health care. Then maybe when a pwME says they have...

I haven't read the full article yet, but I would like to say that my ME is not relapsing and remitting. I never have a remission from this. I always feel poorly, and often, I feel terrible. In my experience, there is never a break from ME. If people see me out and about, that is not a good...

Re inconsistency. Sounds like their interview techniques follow interview methods police use. Repeat interviews, looking for holes or inconsistencies in the story. The effects and restrictions of ME vary, even over the space of a few minutes. So, this fact then relegates those who suffer from...

Many times over the years I have felt physically and cognitively exhausted after a 10 to 15 munute phone call. Laying on the couch talking on the phone to anyone. No vigorous exercise there. After mild physical exertion, my body and brain both feel taxed. This manifests as tired painful...

Thanks @Ravn :thumbup:

Ongoing reassessment is terrible. Benefit programs seem to operate on the assumption that the person receiving benefits is guilty until proven innocent. Official guidance to restrict testing, of course assists in proving the "guilt" of pwME who are actually suffering from a very debilitating...

Very well put. Thank you.