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It must be over three years since I have been able to get a visit from my GP. Before lockdown I was working up to a visit to the surgery as the amount of time I can spend upright has improved, so will need to start to thinking about that again. I don’t know that after the first six months or...

Unfortunately these ideas can impact on the treatment given to people with ME, on Facebook and in patient forums I have read accounts by a number of people in relation to more than one UK specialist ME/CFS service where they are given psychotherapy aimed at resolving childhood traumas as a...

It would seem to me that this ‘phenomenon’, though it is not quite clear what the authors have observed, could in itself represent a cognitive impairment. Given high levels of variation between individuals within the normal population surely you would need considerably larger groups sizes to...

Though this is likely to be the case for some people with ME, it does sound like an enormous vague generalisation that lacks a clear evidence base. What are the ‘things’ assumed to worsen, and surely it depends on what treatment they get. Most people with ME would argue that GET would make them...

Am I missing something or did they fail to include an objective biological measure of the underlying pAPS? So though this study was based on the hypothesis that variation in fatigue can not be explained by variation in the underlying medical condition, they have no way of knowing if that is the...

@Michiel Tack, thank you for putting in the extensive work to achieve these important comments.

Yes @Invisible Woman we do not know near enough to make any statement about cause and effect in relation to sleep issues and have no idea whether the ‘sleep police‘ by presenting absolute rules of good sleep practice do more harm than good or not. I have given up trying to manage the variation...

Rhinitis is intermittent with me, but does often occur without any obvious infection or environmental trigger and is a feature of PEM for me. Didn’t we have a poll on this before or am I making this up?

Thank you @Joan Crawford for sharing. Below is the main text of the letter reformatted for those who like me might struggle to read it: Graded exercise self help for chronic fatigue syndrome in GETSET The mean score for physical functioning (measured by the Short Form-36 [SF-36] subscale) for...

Oh that every group of medical and medically related professions had a group as on the ball and as relevant as Physios for ME.

@Marky, this is perhaps less of an ethical no no than with the UK paediatric study, but still telling people with health issues to ignore medical symptoms and to lie about those symptoms is profoundly dangerous particularly with anyone who might be vulnerable for any reason. Also given the...

@PhysiosforME, where have you been all my illness. Very interesting proposals.

There was a whole field of psychology about why people are bad at making decisions in tasks where the outcome of that decision was delayed, for example like steering an oil tanker where you have to start the manoeuvre well before it actually happens. Unfortunately my knowledge is some forty...

So we are both reluctant to use the medical system whilst simultaneously desperately seeking expensive medical assessments to prove we have a biomedical condition. Does anyone ever get the impression that such researchers make up whatever premise happens to suit them at that point in time...

As a Speech & Language Therapist I am fairly confident that I do not have any specific voice or laryngeal issues that could not be explained by breath support issues. Nor am I aware of any higher incidence of such problems in other people with ME. Certainly it is not something I have come across...

It is possible to argue this point, but in doing so it makes potential bias explicit, something that needs to be addressed in the experimental design. Once potential bias is admitted, the need for meaningfully comparable controls and for objective outcome measures becomes unavoidable.

I second @Kalliope [added - and @Andy ] and also would argue that no research should be undertaken where the active treatment remains subject to commercial secrecy. We have no way of knowing what happens during the LP intervention, so it is impossible for anyone to undertake an independent...

The Sheffield events usually are, I watched David Tuller’s recent (or a life time ago) MUS talk after the event. [Added - Note - though I could not find it archived on their website, @dave30th ’s talk is still on their Facebook page ]

I personally found the article positive overall. I accept there are pluses and minuses to the current situation. Personally my communication, sense of feeling involved in my community and social contact has improved on the basis that everyone is making more of an effort and that more is...

Thank you @PhysiosforME a great piece of work making the important points clearly and concisely.