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Does this represent a positive culture shift? It certainly seems to do so. Although this conference was not necessarily the place to do it and although I applaud the steps forward by the CFS/ME Research Collaborative, do we still need to see them formally rejecting the bad science and bad...

So we just need to do isometric yoga in a warm bath with an ice pack on our heads. (Sorry for being flippant, I guess until we have an understanding of the underlying mechanisms people will pick up on individual features of the disease and focus on them. However when the only treatment option...

The stakeholder list reads as very eclectic even eccentric, and one can not help why some of them actually want to be stakeholders. Also I am not sure of the logic for allowing ME/CFS services covering a specific local area, but excluding local patient groups because they do not have a national...

Having gone to the trouble of writing a longer comment in response to Charles Shepherd's attempt to redirect comments on this MEA post to the issue of gentle yoga, I thought I would get my money's worth and copy it here: I take your point Dr Shepherd and have great respect for your expertise in...

Although agreeing with Marks on his assesment of PACE, I would argue that though it is bad science, it is still science. Indeed careful analysis of the PACE data provides weak evidence that CBT/GET are unhelpful for people with ME/CFS. However Marks goes further and argues that the faults of...

Moderators, is this turning into a new thread on gentle exercise and yoga?

It is a potentially interesting study, though yet again another study that relies on subjective measures which are most likely to be subject to placebo or bias effects, and are not necessarily indicators of any change in the underlying condition. Further there are the problem of the lack of a...

It is a potentially interesting study, though yet again another study that relies on subjective measures which are most likely to be subject to placebo or bias effects, and are not necessarily indicators of any change in the underlying condition. Further there are the problem of the lack of a...

On the issue of grading, mild, moderate, etc, what is ultimately relevant is not what in theory a person with that 'grading' can do, but rather what are they actually doing. Even if we had a reliable and agreed grading, it may be that someone with mild disability, who is working part time, has...

Promoting this article without any comment is directly undermining the good work that Dr Charles Shepherd and the MEA have done in challenging the harm and damage caused by the LP and by GET/CBT. Obviously there are people with an ME or CFS diagnosis that believe such as Neurolinguistic...

@Graham, Version 2 is great, everyone might have suggestions for modifications as everyone would write a slightly different letter, but this is eminently sendable. It is possible you could be more specific about what you are asking him to do, but I don't know if that would necessarily be more...

The Amazon page for this book with access to the content page and some more pages is

I suppose we would like Prof Murano to come out against the whole methodological nightmare of PACE and the BPS copycat research failures, perhaps even co-signing David Tuller's letter to the Lancett. However he has no necessary obligation to even consider the research that is not directly...

Yes, the BRTC include both Magenta and FIT-NET in their list of the current work of the collaborative. See the link cited above http://www.bristol.ac.uk/population-health-sciences/centres/brtc/current-trials/ The appallingly low standard of both these trials is in total contradiction of the...

@Graham, an important endeavour and a good critique of PACE, but it needs to be made clear from the beginning why this is relevant to the Bristol Randomised Trials Collaborative. That PACE is being used as justification and a model for ME/CFS research undertaken by The University of Bristol. I...

I can get a sore throat during PEM, usually as a cluster of symptoms resembling the onset of a cold. It does not sound as severe as your sore throat @JaimeS, so it does not effect talking, though by this stage I will be in bed and not likely to be talking much. I also can get nausea as part of...

I remember from one discussion thread, it may have been on an ME Association Facebook post though I am not sure, there seemed to be two distinct groups of people, those that had adverse reactions to the flue vaccination and those that did not. Interestingly there also seemed to be two groups of...

Is this meaningful in relation to children with ME? There are the problems of the disrupted sleep patterns , such you can even see reversals of normal daily rhythms (ie active at night and sleeping during the day)? It could be that only using data between 6am and 11pm is misleading, especially...

If this description from the trial paperwork is an accurate description of the feasibility study then it would imply the explicit intention to amend the experimental design on the basis of the outcomes of the feasibility study. Surely this means the rolling of the feasibility study into a main...

For a number of years I have regularly debated with my GP whether or not to have the flue jab. Over the Millenium new year, I had a bad dose of flue, that triggered a major relapse in my ME that forced me to take ill health retirement. So I had the jab for a number of years, but for me it...