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In relation to children with ME, particularly in those geographical areas where child protection cases are more frequent in relation to families rejecting GET/CBT, is full and free informed consent even possible? For consent to be fully informed families need to know the risk of social services...

A complete irrelevance but did Cochrane ever come up with an appropriate placing of ME/CFS within there group structure? We must has long passed their own deadline.

There is a problem evaluating complex interventions in real life situations where it may be impossible to control for all the many variables involved both in the inputs and in the outcomes. When I was an undergraduate there was discussion of the need for convergent evidence in some situations...

I would argue there is a place for flexible outcome measuring based on specific patient agreed objectives for short episodes of rehabilitation or intervention, as it can turn a long haul into lots of smaller steps hopefully meaningful to the clinician and the patient. In such situations it does...

Though Turner-Stokes may not have deliberately intended the double meaning of gas-light in this context and though it was in less popular use at that time, the pejorative sense was still reasonably widely understood, so its use in this context implies at the very least a casual disregard for...

Though in current (or at least relatively recent, given my knowledge is decades out of date) scientific discourse ‘a priori’ has come to mean ‘from first principles’ or to work out an answer by logic from an established theoretical understanding or agreed premises, rather than by...

Admins - did not know whether this warranted its own thread or not, so please feel free to alter or move as appropriate. Dr Myhilll has started a petition calling for the immediate withdrawal of the old 2007 NICE ME/CFS guidelines, see Call for NICE to WITHDRAW its CURRENT ME/CFS GUIDELINE –...

Post copied from Petition: #MEAction: Publish the NICE ME/CFS Guideline Now Dr Myhilll has started a petition calling for the immediate withdrawal of the old 2007 NICE ME/CFS guidelines, see Call for NICE to WITHDRAW its CURRENT ME/CFS GUIDELINE – CG53...

The only difficulty is that there is a difference between ‘costing less’ and being more ‘cost effective’. It would certainly ‘cost less’ to develop your flying programme by will power and graded jumping programmes, indeed I have spent very little on my thirty year yogic levitation programme...

My heart sinks with just reading the title of the thread. I do hope I am not being over pessimistic, and the NICE ME/CFS evidence review, though the resultant guidelines are not without fault, was to be fair of much higher standard than the related Cochrane reviews.

So far I have felt frustrated by how poor quality many of these Long Covid studies are, that too many are repeating the failures of previous ME research and, though I hope not, I feel there is a possibility that people with Long Covid in a few years time will be no better off than we are now...

I agree, what we have seen for over twenty years is a devotion to a psychological and behaviour intervention that fits into neat marketable packages, and no interest at all in the conditions it is supposed to treat. I would argue this is illustrated in the ever increasing list of conditions they...

@Valerie Eliot Smith, thank you for all the effort you are putting into informing us on these issues and best wishes to you for tomorrow onwards.

To state the obvious, twenty years of mismanagement of ME in the UK does not inspire confidence that overnight British medicine will miraculously get it right for Long Covid. Whatever happens it will be a long hard struggle to get good management systems in place for Long Covid.

Thank you to our guidelines group for all your hard work, it must seem feel it is becoming endless, and thank you also for continuing to participate in the general activity of S4ME with the additional stress of monitoring what is said to whom and ensuring it does not breach the lurking embargo...

So does this mean there will be some Long Covid patients being wrongly accused of never having had Covid-19 in the first place?

Surely anything done requires ethical approval? Many years ago just going to schools as part of evaluating the word lists I was using in looking at acquired spelling disorders linked to brain damage in adults, just basically administering brief spelling tests to a few hundred children. I not...

It is frustrating there is so little good research and what I have read is so inconsistent, with estimated incidences of food intolerances associated with ME varying from 13.5% to 80%. When I was reading up on the issue sometime ago, I ended up assuming that around 40% of us will have gluten...

Also given they are now admitting GET/CBT can cause harm and have as of yet presented not indication as to how to distinguish those that will be harmed from those that will not, they are asking the patient to play Russian roulette. But also Russian roulette where they can not give any meaningful...

One possibility a dietician suggested to me (my food intolerance symptoms are dose dependant and come after a time delay, in the case of my gluten intolerance the main incapacitating symptom is a migraine that starts 24 hours after the gluten consumption, though a caffeine triggered migraine...