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I have suspected livedo reticularis for some time as an occasional symptom. I have never been able to ascertain what it might mean.

Does that mean that in CFS the patients are faking it, they just don't know that they are?

And Afme was in at the beginning of that and bears at least partial responsibility. Does anyone kow the unadorned history of those days?

Is it a necessary conclusion that the data have been altered in a way which would have been known to those releasing them for QMUL? Is it not possible that they merely released the file in the form which it was on their database assuming and trusting that it was in the form which had been used...

Frankly, I fail to see why or how the use of inaccurate devices to measure something which has no effect on the underlying disease process could be of benefit, other than to tell us what we already know. I'm in that sort of a mood today.

I agree with that about the complexity of sleep states. In the first ten years of illness I could sleep unbroken for ten or twelve hours and feel that it was entirely dreamless. Now I sometimes wake repeatedly feeling I have been dreaming for hours. The afternoon PEM sleep, when you fall asleep...

Who selects the experts?

There seems to be some irony in this. Did not QMUL say at one stage, as a reason for not disclosing data, that they had no-one with the necessary skills. That argument seems to be somewhat undermined.

So many papers. Has anyone ever studied whether their is an inverse relationship between number of papers written and understanding of the nature of the problems. EDIT. I did mean his first paper referring to ME. I bet he wishes he hadn't mentioned the Royal Free epidemic in a paper on hysteria.

Is there any evidence to indicate the minimum movement required to protect against this loss of function? One would suspect that it would be far less than the sort of exercise envisaged in GET.

It recently occurred to me that the suggestion that some clinics may withdraw the diagnosis of CFS and substitute Pervasive Refusal Syndrome, or whatever thy call it these days, specifically so as not to be bound by NICE guidelines on treatment of CFS, and thus potentially avoid one cause of...

Thy always said it the illness was a "cutting edge" problem. In more ways than one.

I am not sure there is much "induction" in the process. It seems to be entirely a priori.

That information is interesting, and, as you indicate, concerning. There look to be many points at which Sam's treatment appears to have been at variance with those guidelines. The guidelines may be bad but one might expect failure to comply with them, in a manner leading to worse treatment and...

In the middle of the night it occurred to me why I have, on the other thread, been going on about observation, assessment and evaluation, or apparent lack of them. There appears to be a major discrepancy between rhetoric and practice which needs to be explained. Practice for treatment is...

Certainly, but the problem seems to me to be that there is unlikely to be a "one size fits all solution". My gut feeling is strongly against sleep modification. Abnormal sleep is a consequence, not a cause, of the illness. If it is found to be a cause the patient was suffering from sleep...

There is one thing that strikes me in particular from the other thread which has presumably precipitated this debate. There may possibly be a compression of time due either to the circumstances or to the illness, but if the comments are taken at face value, it sounds as though enforced...

It is not merely a question of training. It is the capacity to make judgments and to learn outside the delivered training. People have to be responsible for their own decisions.

That's a dreadful story. Do medical "professionals" now lack the capacity to take and comprehend a history, and, if so, why are they registered to practice? Do they think that iatrogenic harm can only be caused by others? Striking off seems to be an inadequate sanction for some.

In view of the earlier discussion about GOSH I include this link to evidence at the contaminated blood enquiry. It makes disturbing reading. https://www.theguardian.com/uk-news/2019/may/09/haemophiliac-boys-mother-was-labelled-neurotic-blood-inquiry-hears