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Coming at this as someone who knows nothing about them, when I viewed their website my conclusion was that they appeared to be set up to give professionals a voice under the guise of a patient group. There are just too many professional advisors listed for this to be a genuine 'patient group'. I...

Are there actually any ME patient members of this organisation, as when I looked over their website all they seemed to offer patients is the occasional coffee morning and Yoga classes? There doesn't seem to be any means where members can engage socially online.

So the clinic that Mike Beadsworth, one of the professionals who resigned from the guideline committee, now runs? Michael Beadsworth a consultant in infectious diseases and clinical director specialist in academic medicine at Royal Liverpool University Hospital, and clinical lead for ME/CFS...

And the IAPT outcome measure are highly misleading, so I'd anticipate any ME/CFS patient receiving treatment via this route is going to be deemed 'recovered' however ill they are...

Did the Liverpool clinic respond? I suspect he is referring to the clinic he used to run. EDIT: I meant the clinic Allister Miller used to run, as obviously this is who is feeding the President of the RCP the information. If GET and CBT are so effective, why are there so many long term...

Yes, an excellent well balanced article. Apt that is is published today.

Yes (you are correct). Because there are no services for patients with severe ME/CFS in the UK, most CFS clinics state they only accept mild and moderate (ambulant) patients. Some very severe patients do end up in hospital, but you only need to read Jessica's book to see how inappropriate and...

I think it shows patients are in favour of the draft guidelines as they saw them, which shows that it is not a small minority of patients opposing GET and 'CBT for CFS'. I don't expect every patient to have the depth of knowledge we have on the forum, and you also need to take into account the...

That worked for me and I use Google Chrome. So thanks for the advice as I can again see comments like I used to be able to (no way I am setting up a twitter account myself).

You are unfortunately living in an alternate universe, one bound by the laws of physics and time...

He is referring to the outcomes recorded by clinics. As members here are well aware, thanks to @Jonathan Edwards, the unreliability of these measures are why robust clinical trials are required. Hearing these sort of statements from what should be an independent senior physician does not help...

Allister Miller has a vested interest, due to his intricate involvement with the PACE trial (quote from 2011): https://www.sciencemediacentre.org/expert-reaction-to-lancet-study-looking-at-treatments-for-chronic-fatigue-syndromeme-2-2/ Edit: Just laughed when I imagined how @dave30th would...

https://www.ncic.nhs.uk/consultants/alastair-miller A pretty weak argument from the Deputy Medical Director of the Joint Royal Colleges of Physicians Training Board (JRCPTB).

Getting a formal diagnosis does not involve 'medication for life'. Like any other medical problem, patients have choices after diagnosis! She is so ignorant, doesn't appear she has even bothered to read the NICE guidelines or the diagnostic criteria (which require substantial impairment of...

I'm wondering what impact the experience of being on the committee has had on those BPS/MUS members who PWME were concerned about at the time they were selected, but have actually signed off on the final guidelines and not resigned.

I'm not on twitter so can't read the comments, but it is natural for there to be an increase in ADHD diagnosis over the last several years (including the ADD type) as it used to be an exclusion criteria for autism, but in more recent years (and in the DSM 5) it is recognised that about 70% of...

In light of the recent 'protest' resignations from the committee from 3 professional members with known conflicts of interests and/or clear ideological attachments in response to a finalised guideline that has objectively and thoroughly reviewed the evidence, I wonder if NICE will learn anything...

Just bumping this thread up again in anticipation of Wednesday... https://www.nhshealthatwork.co.uk/chronic-fatigue.asp The 2006 guidelines are still live on the NHS website.

I don't know other's experience, but I have never - in 30 years - had a medical doctor suggest directly to me that my ME (which they do sometimes refer to as 'CFS') is a mental health condition rather than a physical illness. Neither have they suggested I exercise more or that I am...

I guess this is an individual choice, but I wouldn't state that. I would state I wasn't suffering from a mental health condition. I feel it is very important for health professionals involved in my care to understand and accept my reality (both objective and subjective). I have autism, which...