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Though men with ME may be gaslighted, I suspect that on average we are better treated than women with ME, and also had ME not been a condition that predominantly effected woman would men with ME be better treated than they are. Also the fact there are woman clinicians does not guarantee they...

Is the issue that any research needs to involve some evaluation of subjects total activity level during the research process? This is in relation to both meaningful outcome measures and selection bias. Participation in research has energy costs such that we end up with the act of measuring...

Reading this thread highlights how important it is for access to forums to share information like this; to develop a collective repository of the science, of what products are available and of different people’s experiences, good and bad. Ideally specialist ME services would provide a mechanism...

To conclude that ‘life stressors’ of themselves are significant contributors to symptom exacerbation you need to be able to distinguish between them as sources of stress and as unavoidably requiring higher levels of activity/exertion. ‘Life stressors’ almost invariably demand significant...

I am half remembering from somewhere a useful wording that indicated the need for patient involvement in planning but how to avoid a tame user group or charity with close links to the researcher(s). It was something about using a national charity or several charities/groups to ensure a voice...

This might be too specific for your intentions, but I would want to reiterate ‘wherever possible use objective outcome measures’, ‘in unblinded trials never rely solely on subjective outcomes’.

Yes ‘convergent evidence’ does not mean lots of evidence from repeated use of the same experimental design, but rather evidence from very different sources or different research methods. Repeating the same error over and over again, does not make the results any more reliable, but it may be...

Doesn’t it depend where you are in the British Isles? When I lived in a part of Scotland with high numbers of sheep, but low numbers of red deer, ‘tick fever’ was blamed on sheep ticks. (The red deer were a relatively recent (re) introduction to a number of the Western Isles, for the utility of...

As a psychology undergraduate in the late 1970s and then involved in clinical research in the early 1980s, we were very much taught that self reported outcome measures in unblinded studies were methodologically unsound. It was accepted that in some circumstances they were unavoidable in...

Here is a novel idea, how about demonstrating with objective outcome measures that you have any interventions that would with individual patient groups by themselves before suggesting they work for combined trans diagnostic patient groups? Though people with long term illnesses may have some...

As well as contradicting those that believe exercise is always the answer, if confirmed this is important in relation to the belief of biopsychosocial brigade that all forms of fatigue are the same and that the best way forward is to give identical interventions to ever broader patient...

Not sure which thread would be best to post this, but have included it here as it is in effect a comment on the draft guidelines. Goodelf has written a piece published on the Opposing MEGA blog, pointing out anomalies in the recorded selection of papers for the evidence review: The Mystery of...

Following @Mithriel ’s line of discussion would this ‘model’ predict enjoyable or pleasurable activities to be less harmful than negative activities in ME. In as much as it is possible to quantify levels of exertion involved, my personal experience is that pleasurable activities are as likely...

One of my few brushes with ‘celebrity’ was meeting the family that the gangsters in Get Carter were later based on. That was back in the day when Spain sheltered people wanted in the UK.

But we don’t want a MEGA Carta.

To be pedantic technically we can only say that there is no environmental or external reason for ‘these signals to be sent’ or these sensations to be experienced. There could a physiological reason for theses sensations, we just do not currently know.

Subjectively seeing the same trusted health professionals over time is much more preferable than an ever changing sequence of strangers, however though I see continuity of ‘good’ care as desirable, continuity of ‘bad’ care can be disastrous.

Thank you @Hutan for providing this useful summary.

Prof Crawley has avoided saying much in research papers about aetiology, but in the press she has repeatedly referred to ME/CFS as having biomedical components, but she is wedded to the idea that those biomedical components can be magically treated by behavioural and psychological interventions...

So counter productive this distinction between CFS and ME and the assertion that such as GET or CBT is relevant to CFS. There is no evidence than CBT/GET helps anyone anywhere on the ME/CFS spectrum and good evidence that it can be harmful to people anywhere on the spectrum. Further we have so...