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Many thanks to our NICE guidelines (rapid response) team and to those forum members who are members of or who inputted to the NICE Committee itself. The work involved has been considerable, but hopeful a resultant significant improvement will make this cost worth while. Brian Hughes latest...

My reading is that the authors don’t think they need to make this distinction. They understand the symptom of chronic fatigue is not the same as CFS which they acknowledge may be a distinct biomedical condition, which they confusingly also seem to regard as solely defined as persistent chronic...

Though I very much agree with what you say, @Hutan , I am not sure that the authors are referring just to GPs or consultants under the term ‘health care professionals’ and to play Devil’s advocate there are a lot of people one comes across on social media that seem to be looking for such support...

My reading is that they are seeking conclusions that they believe relate to anyone who has the symptom of chronic fatigue that can be generalised to anyone with medically unexplained symptoms, that they indicate is a description that includes those with symptoms unexplainable by an underlying...

In terms my own experience false optimism, often supported by clinicians most especially in my contact with a specialist ME/CFS service, has been more harmful than realistic pessimism, both in terms of health outcomes and finances.

Also in some work pension schemes people are only eligible for ill health retirement when they get formal confirmation that they will never recover enough to be able to work again. I was pleased at the time to have a neurologist who said I would never be well enough to work again, as this was my...

Had a moment of panic as I struggled to make sense of my photo driving licence (as the codes are only explained in very small print on the reverse, that I did not locate until after looking them up on line and after starting this post). However before all that I realised as it had my current...

On an MEA Facebook post of the recent YouTube video on physiotherapy for ME from London’s Royal Free Hospital there was a comment from a patient of the featured physio including a throwaway half sentence about being ‘happy to pay’, which left me confused.

Shame PIP is not on the list.

We do not have any clear consensus on how to deal with discussing prognoses with other people with ME. I remember some years ago not proactively offering information and support to a neighbour in the early stages of severe ME, because in the past I had found support group settings depressing...

I suspect that many BPS advocates were never particularly attached to the deconditioning model, rather what collectively defines them is their belief in the supremacy of psychological/behavioural interventions. Reading through the ‘dysregulation model’ document, albeit fairly superficially...

Sad that the 6 minute walking test was not repeated again on a day two, as this does not enable us to distinguish between increased fatiguability and PEM.

We had discussed this at the stage of the committee being established and it does appear that conflict of interest is defined by NICE differently for those involved in advocacy work and the charity sector than it is for those working within the British NHS or universities, much tighter...

Surely if you lack pre morbid scores for the individuals in the various groups the only way to reliably avoid risk of selection bias is to use sufficiently large cohorts to ensure you are looking at representative population differences not individual differences? Could groups sizes of 21, 17...

An excellent informative video.

Even in machine translation this reads very well. Though it perhaps overstates our physiological understanding of some symptoms, it is overall a very useful document.

If it looks like the submission by the Deutsche Gesellschaft für ME/CFS is something we could get behind, would it be worth us submitting a short comment primarily endorsing what they say?

My understanding is that the sub group who compiled our response to the November 2020 draft guidelines will have sight of the draft and compile our response in relation to any errors of fact if any such response is needed. Because of the embargo they then can not comment themselves on what they...

This abstract indicates the author is imposing their own, potentially controversial, definition of what is a diagnosable disease. Such creates a purely circular logic that is as dangerous as it is insulting to the patient. In nearly thirty years every consultant, GP and specialist clinician I...

It will be interesting to see the final wording, but the latest 2020 draft NICE guidelines could be interpreted as recommending CBT for ME/CFS. They clearly state it is not a curative treatment, but do suggest it is a useful supportive intervention. It is sad if they do leave the draft as it...