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It’s definitely leg pooling for me. Waist compression makes no difference. Back when I was moderate I found that thick tights and high heels kept blood from pooling in my feet and helped me to stay upright for longer - at a cost though. Reducing the OI didn’t (much) reduce the PEM caused by...

Besox Precision are razor sharp and will cut through anything - including any stray fingertip in their path

What about children? I became sick as a young child and grew up being gaslit by parents, doctors and teachers. It made me depressed and insecure for years as I kept being told that what I was experiencing was a delusion. That has lifelong effects even after you see the truth, like being raised...

Patient: I feel more unwell when I exercise. Doctor: No you don't. Keep exercising, and you'll feel better. Patient: I did what you said, and now I feel a lot more unwell. Researcher: Let's lie to patients and tell them exercise is the approved treatment and will definitely make them feel...

Thank you Trish - you’re amazing. BACME have hit on a politically persuasive phrasing here which may cause immense harm. The WHO quote says patients have a right to “A process aimed at enabling people to reach and maintain their optimal physical, sensory, intellectual, psychological and...

For me, stimulants are helpful in the way that a bank loan is helpful. Sometimes you need the resources to do something time sensitive. But it all has to be paid back eventually. As other posters have said, this result is meaningless without long term follow up using objective activity...

I gave up after ten questions. I am so angry that scarce donations have gone to this. If anyone is listening (and it seems they aren’t): this survey is not accessible for most severe patients.

Not sure the journal was named - this is in BJPsych Bulletin, which is the house journal of the Royal College of Psychiatrists. This paper appeared in its Cultural Reflections section, the goal of which is to support psychiatrists to provide “excellent culturally informed practice to deliver...

The somatisation approach takes a situation in which we have no clear evidence. It then asserts that an unevidenced theory of mind, and a treatment hypothesis which has been proven ineffective, are rational and must be true. With equal conviction it asserts that the hypothesis that there may be...

As usual with BACME my flabber is gasted. They acknowledge that “We are aware that reflecting on times when life has been extremely challenging is emotionally demanding, which will make completing the survey difficult for some people” but not that for patients who are very severe, a survey...

I loved the “Sherlock Holmes” approach of the hypothesis paper. It eliminates everything ME/CFS definitely isn’t, and gradually the shape of what it must be starts to emerge. Before this year the story of 99% of ME research was overattentiveness (sensitisation?!) to pseudo-positives which were...

I haven’t seen any coverage yet in Pulse, the UK GPs’ magazine. Not surprising - they’ll say there’s no clinical impact from this research. Pulse seem not to be in a hurry to discuss whether there should be an attitude shift among HCPs as Sonya suggested. Is there any interested GP who...

The main lines of attack are now becoming clear: - this research was irretrievably biased by the involvement of biased activist patients - participants didn’t have HCP-diagnosed ME/CFS, they self-selected by questionnaire - associations between ME/CFS and certain genetic regions could be as a...

Chris was interviewed at length and was of course excellent.

Sorry for the dumb question, but could phagocytes be implicated in PEM? Could a problem with mitophagy or other phagocytosis explain the delay? Exertion somehow decreases phagocyte functioning, and the result is felt hours or days later when a lot of impaired cells are hanging around?

Do we now have to say “noise”? Is it now reasonable to say that if a DNA region hasn’t been identified by the DECODE ME main study as having an association, then the genes in that region probably aren’t usually associated with IOM/CCC-criteria ME/CFS?

I used to think scientific illiteracy was when otherwise intelligent people can’t understand science. But it seems scientific illiteracy is actually when scientists can’t understand straightforward writing. Perhaps scientific illiteracy syndrome is a side effect of being clever enough to...

Diagnosis wasn’t done by questionnaire. Diagnosis by an HCP was a precondition of the questionnaire. The questionnaire checked whether the patients with the diagnosis met the criteria for diagnosis. So that objection need not detain anyone. Unless Prof. Carson would have preferred patients with...

If human physios can so effectively be replaced by an app, it shows how trivial NHS physio has become. There is no substitute for a human physiotherapist conducting a physical examination and assisting you to perform the exercises correctly by showing you on your body, but increasingly the NHS...

ME sufferers could adopt a “type C personality” as a response to the stigma of the illness. Extreme niceness is a logical strategy when dependent on help from others that society says you have no right to. Not much point complaining and asserting yourself if you can’t look after yourself...