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This paper/article appeared in the journal "Progress in Cardiovascular Diseases". It isn't related to ME but so much of what is described reminds me of some of the experiences of writers and researchers on the subject of ME - people like David Tuller ( @dave30th ) and Keith Geraghty ( sorry...

I did once stop and refuse to continue a test. I was doing a treadmill test for checks on my heart. I think medical staff were looking for evidence of blocked coronary arteries, but that wasn't what was wrong with me. (It took a different hospital and nearly another year for the problem to be...

There were far more responses to this survey than were given in the document from post #1 itself. All the patients who gave examples of doctors' comments, and many of them couldn't be included in the response itself due to lack of space. So, there is a supplementary document available, which is...

Something to consider, and I'm not recommending anything at all... Low (and high) vitamin B6 can cause peripheral neuropathy.

And doctors compound the problem... Doctor : Good news, Mrs X, your test results are all normal. <Doctor gives a big beaming smile.> Patient : But I don't feel any better, what can I do. <Patient looks miserable and not at all gratified.> Doctor : <Looks pissed off because the buggers never...

I don't know about people with fibromyalgia. But people with thyroid disease who complain of not getting well on the standard (under-) treatment are referred to, directly to their faces quite often, as drug addicts and drug-seekers. Many doctors appear to be oblivious to the fact that T3 is a...

The response to the Women's Health Survey from the ITT (Improve Thyroid Treatment) group can be found here : https://drive.google.com/file/d/1sK6d8LManRI3mMIDT5nERThwRPOZlnRT/view I thought it might be of interest since so many people with ME also have thyroid disease of some kind. And I...

Regarding Long Covid care for children are parents going to have their children taken away if the kids don't get better? Or if the child refuses to follow instructions? Or if parents refuse to allow their child to do the treatment suggested because it has already made them worse? Will children...

Or perhaps we could discuss whether or not doctors need to disinfect their hands after cutting up dead bodies, but before attending pregnant women.

What do you call it when you have a medical condition which has been definitively diagnosed, it has been mentioned in clear terms in a letter from a surgeon, and then, a few years later, when the patient mentions it to a doctor who was uninvolved in the diagnosis that doctor just rolls their...

The report from the Chronic Illness Inclusion group is really excellent.

This is the first time in my life that someone has won a prize for writing and I've read some of their work before they received it. Many congrats to Ed Yong.

Merged thread Mostly good article, worth reading, several mentions of ME/CFS. https://www.theguardian.com/society/2021/jun/13/why-are-women-more-prone-to-long-covid

I would assume this question is based on the assumption by the authors of the questionnaire that doctors can never be wrong, and me, a patient, thinking otherwise is a sign of me being mentally ill. I have many examples in my own medical history of doctors wrongly attributing my symptoms to...

If there is any merit in this paper - and I can't judge today - then it suggests that problems are arising with the metabolites of tryptophan. And for anyone interested in doing an n=1 experiment some of the things mentioned in the diagram below are available over the counter, at least in some...

But, but, but ... CG said that exercise makes everybody better! Source : https://www.s4me.info/threads/paul-garner-on-long-covid-and-me-cfs-bmj-articles-and-other-media.15629/page-20#post-320520

Is that reference to "more than 80 people per month" figure referring to suicides alone or deaths from all causes? Just a heads-up... In that last sentence of the quote the word "than" is missing before the number 80.

If a treatment, such as exercise, is individualised it therefore implies (to me) that there is no protocol being followed. So if therapists are making stuff up as they go along doesn't that mean they can be blamed for harming people with GET and/or CBT of their own devising?

I liked all four of these articles. I wonder if they will have any impact on IAPT or MUS or CBT for everything.

The thumbnail for that video is so unflattering to PG it's actually very funny.