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I have read it in several places but my memory is so bad. I had thought it was in the Adults Improving Access to Psychological Therapies programme ( see https://www.england.nhs.uk/mental-health/adults/iapt/ ), but in a quick glance through the links I did not find it stated clearly. It is...

Here is the body of the MEAction suggested draft for people to adapt to send to NICE Although very relevant, the MEAction approach allows NICE to potentially mix the issues of bias and with conflicts of interest as defined by themselves. The feeling of those commenting here seems to lean...

I had a surprise birthday party yesterday, that was great, but ... ... So do not at present have the intellectual capacity, but if no one takes it on I will later (after some more sleep) go through this thread to pick out the relevant information.

Not with it enough to look back through this thread but someone earlier suggested that the issues arround the individuals with clear financial conflicts of interest (eg marketing training re MUS), etc need specifically addressing, as NICE policies should exclude them from sitting. This is a...

I agree, that we should be raising the conflicts of interest in specific individuals now, where there are also clear arguements showing NICE's own policies are being breached, and that we subsequently raise concerns about potential bias of the whole committee later when the whole committee is known.

Attempt at a questionnaire: 1. Do inoculations/vaccinations increase your ME symptoms? + 0 - 2. Has your ME increased your susceptibility to other infections? + 0 - 3. Do co-occurring infections increase your ME symptoms? + 0 - I would answer +++, and wonder if we divide neatly into groups...

Don't know if this is relevant to why I am one of those that don't get a counter intuitive dimunition in ME symptoms in the context of an additional infection, but unlike @Sean I do not know in advance when I am getting a cold of flue, as a common symptom of PEM for me is feeling like I am...

The King Lear effect "Where the greater malady is fixed, the less scarce is felt". (May not be an exact quote as my memory is not reliable.) I think when he said this King Lear was seeking physical discomfort to distract himself from mental anguish. I guess the BPSers would see this as...

Thank you for the link, it makes very interesting reading. It is a shame that the chapter that this thread is about is behind a paywall, as we can not see what evidence purportedly supports their claim that vaccines have not been shown to cause ME and Fibromilagia. Obviously the onset of a...

Are there any figures on the numbers or percentage of people with ME or with Fibromyalgia whose onset dates back to a vaccination? A correlation does not give clear evidence for causality, but it is very suggestive of issues that need further investigation.

I had come to the conclusion I needed to address this issue with my GP especially as my GP's practice does not seem well able to deal the situation adequately when I am not able to attend the surgery. Unfortunately as I was drafting suggestions for some form of care plan, I have found out my GP...

Thank you @Sly Saint, definitely need a memory transplant as I had read the earlier posts in this thread.

Are we getting the format of a strongly worded protest letter to NICE about the potential bias of the Committee: - Introduction about the protest against the current guidelines based on bad science relating to CBT/GET, leading to the current guideline rewrite (perhaps references in appendix of...

I don't know if anyone has already posted this link, so appologies if it is already mentioned in this thread, but Carol Monaghan has already raised this in Parliament in the discussions about a full debate on ME, see...

It sounds like a great result for the US.

Can not face reading yet more bad research, but presumably the evidence for this change is open labelled trials with subjective measures and biased or inadequate controls.

I very foolishly have just read this entire thread in a single sitting (rather a single lying) and probably should assimilate and reread before commenting. However, I do feel, whilst making sure we do not not undermine the S4ME members who are also lay committee members and that we do not...

So the committee rewriting the ME guidelines is being recruited by the RCP even though if my memory services me correctly, they indicated that they felt the old guidelines were fine as they stood.

Interesting, might this contribute to understanding the apparant phenomenon that a large percentage of people with ME find a flu inoculation triggers an ME crash and another large percentage find it has no negative effect for them?

I think I mentioned before, that in my previous work life I have come across the elderly confused physically restrained in hospital settings and use of what amounts to chemical restraint, in situations where no formal committal procedures had been undertaken. It would seem to me as a lay person...