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Why don’t people question that if something is ‘unbelievably good’ it might just be in fact unbelievable? Yes, the BPS empire building, all the MUS research, FND research, the UK IAPT (improving accesses to psychological therapies) programme, the use of CBT with IBS, non epileptic seizures, and...

So this in part my be an indirect ‘recruitment’ drive, in the same way as if you sign a petition sponsored by a political party you ever after get bombarded by emails from that party?

Is there a risk that such a petition could be counter productive? If the powers that be decide Long Covid and ME are more or less the same thing, could they think ‘as we are spending so much on Long Covid research there is no need to spend on ME’?

Well said @Robert 1973. My first thought is that requesting parity of funding for ME and Long Covid just because there is an overlap in the two conditions would sound to anyone outside the field at best arbitrary and at worst ‘sour grapes’. Does it play into the narrative of those dreadful CFS...

We could do with a stock response ready to send off every time someone confounds ‘ME/CFS’ with ‘chronic fatigue’ something along the lines of: Is there any thing in the draft NICE guidelines that could be quoted here?

It is so important that right from the start of any attempt to make anything conditional on being vaccinated or to produce documentary confirmation of vaccination status, this recognises there are valid reasons for some not being vaccinated and a mechanism for including this in any formal...

I had not read the full study and struggle with following the biochemical terminology (something I would have had no problem with pre ME), but this seems an interesting early step in developing objective markers related to fatigue. However, it is important to recognise that fatigue is likely to...

Thank you @Andy

Thank you @Robert 1973, yes a much better piece of journalism. Though still suggestive that there are ‘sources’ breaching confidentiality.

The MEA are still sharing on Facebook links to these articles and allowing reader/member comments. Though Dr Shepherd is being very circumspect about what he himself says, he is not above encouraging readers/members to comment themselves on such as the BMJ article.

There is now another article, this time in the Times, on the three resignations: ‘Experts quit over call to drop exercise as treatment for ME’...

And no attention to accuracy, even when quoting a headline from her own organisation. Only three of the four actually resigned.

Can you be confident there were no orthostatic intolerance issues at that time? It retrospect I suspect my orthostatic intolerance was present mildly for a good number of years before I recognised it. For a number of years I was aware that there were significant differences between resting...

In advance, thank you to our subgroup that collated our response to the November draft, who are also envisaging imputing time into considering this draft during this embargo period. Do we collectively need to indicate our support for you responding on our behalf to any initial issues of fact...

I see rapid fatiguability as relevant here, though this also interacts with the PEM issues. I rapidly fatigue with sensory over stimulation or being up right, especially in a fixed position, and very quickly experience brain fog, headaches, tiredness, etc. However this is not the same as my...

There is a potential concern in that Dr Shepherd in the MEA’s account of his being ‘stood down’ (see https://meassociation.org.uk/2021/08/dr-charles-shepherd-stands-down-nice/?fbclid=IwAR1raQuSbOP0iSV7JoEubq4F7dJBMWvL4kcE4qRIYaDRsfiPk-le63aXaiU ) finishes with: Though I agree, given the three...

Brian Hughes in his ever inimitable fashion points out the failings of the BMJ’s recent article suggesting the three NICE guideline committee resignations indicate the failure of the entire process, see his Blog The Science Bit...

It will be quite a lot of work, but would it be worth having a list of deviations/changes in the main guidelines from the November draft, and an idea if they seem to be in response to stakeholder comments prepared for sharing as soon as possible after publication.

Presumably the final draft must be now agreed, as isn’t it due to go out under publication/comment embargo two weeks before the actual publication date, to allow stakeholders and the press time to prepare their response to the document at publication? The only things that Dr Shepherd is...

Dr Shepherd describes the ‘conflict of interests’ that lead to his being ‘stood down’ as follows: I know we have had discussions about this issue before, but I am unsure how Dr Shepherd’s role in the MEA represents a conflict of interest when that of those working in the Specialist ME/CFS does...