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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...

I think the reason is that ME sufferers know their own thoughts and attitudes to life, that they have a positive outlook on life that is incongruent with clinical depression.

I am not talking about 'arguments' but what happens in actual practice to actual patients. I am not sure what you mean by primary and secondary arguments in this context. Most PWME go through their lives without engaging in the type of discussions we have here on the forum. What matters to them...

I do agree we need to be careful with our arguments in the context of dealing with the BPS brigade and when writing to journals, but I think we need to understand the frustrations of the average patient with regards to how they need other people to frame their illness as a physical disease. For...

I think it is easy to fall into a trap that we are just dealing with BPS professionals, whereas in our daily lives we are dealing with family, friends, neighbours, and (if mild) work colleagues. Most of these people do not think like BPS professionals, nor use complex arguments about 'mind-body'...

But exercise, or at the very least 'normal activity' is essential for human life. The only reason I am alive is because I am financially supported in a modern society (I would not for example, be able to move to seek food without severe PEM). So GET is not asking people to do things that the...

But surely if GET has harmed you then this is proof of physical disease?

I don't understand why people who are not depressed or don't have a mental illness should be told to deny they aren't depressed or don't have a mental illness. To me, that feels like we are being led to gaslighting ourselves and to deny our own lived reality and the experience of our own bodies...