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That’s a lot of words to say the author is worried patients might doubt the efficacy of what he has to offer. Maybe he should get some support for his catastrophising?

Any further nonsense about remarks being actionable should elicit a reference to Arkell v. Pressdram. Hopefully the current regime has now gone too far to survive. This increasingly poor management has been a terrible drain on community energies ever since the PROMs study, but the situation...

Explaining why this paper is ‘not even wrong’ feels like it would make me dumber. Perhaps that is analogous to why interception may be dulled in chronic conditions. Repeatedly engaging with negative stimuli which cannot be resolved serves no purpose but creates stress and frustration.

Some of Doctors with ME’s content has also been idiosyncratic. MEA needs to become judicious, professional, evidence-based and responsive to members - and not to be the hobby horse for anyone else evangelising their pet theories.

The compulsion to lie flat is unlike anything else and impossible to ignore. It feels like it is an issue of blood supply to the brain. I have lain down on a filthy street in the rain, on the floor of a pub, and twisted myself to fit into the foetal position across the seat cushion and tray...

This question relies on an unproven model of hoe PEM works. For those lucky enough to have care arrangements that make intensive resting possible, it may be the case that after a prolonged period of rest followed by new pressure to exert, the pressure reveals a significant improvement in PEM and...

“The MEA cannot listen only to the few who are baying for blood, or only to the many who welcomed Neil's editorial.” If true, that is very surprising. Why would “many” people with ME use their scarce energy to contact the MEA to welcome an editorial repeating advice we have all heard a million...

Cold water immersion should be filed along with dark chocolate and green tea. My N=1 like Kitty’s is that it’s a stimulant. It temporarily masks fatiguability but not PEM. The exertion bill still has to be paid eventually.

Or a different job.

I don’t think ME/CFS attracts an abnormal amount of bad research. All science publishing and especially all medical publishing is full of bad research for the reasons discussed: incentives to publish low quality work, poor peer review, poor baseline standards of reasoning in medical research...

My N=1: No, this symptom is not lateralised; and yes, blocking one eye or one ear helps. For me, reducing the input by covering one eye or ear reduces the degree of discomfort and sense of exertion, and in the case of eyes can be useful as I can still see. But it makes no difference which eye...

Can’t we just reply to this sort of nonsense with ‘No thank you’. I’m fed up with wasting my scarce “METs” on humouring and nursing the egos of professionals who are paid to know better than this.

There are several activities related to managing my time commitments which usually fall to my family and which a computer could take care of. That is what I understand by introducing temporal uncertainty in HCI. For example, I would find it useful if Teams could finalise my meetings at short...

The Ramsay Fund seems to be making some surprising decisions. Does anyone know what is going on? A compassionate and fearless family member who died a few years back stated in her will that in lieu of flowers, loved ones should donate in her memory to the MEA, specifically for the Research...

Two absolutely critical points which so often get forgotten by the “it can’t do any harm” approach to quackery.

Presumably we can expect more of the same in relation to Long Covid: "Exercise does not cause PEM in a cohort of Long Covid patients most of whom never experience PEM." Clearly these researchers do not understand the logic of the evidence review behind NICE 2021.

I think I’ve posted about this before, so forgive me if this anecdote is familiar, but my cat - who was seriously ill with cat flu when he came to me as a kitten 12 years ago but appeared to make a full recovery - has always seemed both more rapidly fatigued than other cats and to experience...

That’s how I see it too. The difference between a blood test and a patient history is that patients do not have conscious control over their physiology. A test that differentiates ME/CFS patients from sedentary controls but does not identify the cause will not prove that ME/CFS is not...

Maximal flexibility around PPI activities, including the ability to use a proxy, support to contribute in advance or afterwards instead of during a meeting, and the acceptance of PPI members attending meetings with the video off. Maximal notice of activities, preferably scheduling meetings...

TLC? That name is quite the sick joke. The opposite of tender, loving care. The internet suggests that in a nursing context TLC should stand for "Timely: Proactive rather than reactive approach to avoid prolonged unnecessary suffering; Team oriented: Nurses, social workers, trained laypersons...