Search results

Looking at the two links we have for the ExACT study one says the study will run from “4/12/19” to “3/12/20” and the other says “Recruitment will start early in 2021 and we will explore the acceptability”.

I had missed that, so according to this link the study has been seeing subjects thought out this year and was due to finish on 3/12/20 [added - Am I being over cynical, but was using children already known to their own service a way of recruiting children/families already identified as...

There seems to be overlap with this study see https://www.bristol.ac.uk/academic-child-health/research/research/cfsme/exact-study/ Presumably they will be using the same subjects in both studies, so given the subjects are long standing patients of the Bath service there will be a lot of...

Presumably we are seeing an attempt to get in on alternatives to CBT as people beging to realise it is not the magic cure all that it was being sold as. Is anyone aware of a more detailed proposal for this research or the source their 15% figure? The notice linked to above includes the...

The published version of your response @Michiel Tack reads very well, well done for getting this clear response out quickly. Looking at the range of responses published so far all pointing out the major errors in the Turner-Stokes & Wade editorial one only hopes that everyone reading the...

‘Except when they say what we want to hear’. The LP relies very heavily on glowing ‘testimonials’ from happy customers in its own advertising and promotional literature and the proposed research is to be evaluated solely on subjective reports, that is the personal views of the participants...

I read the letter via the Science Hub link. Thank you @Karen Kirke for the work you have put in on this.

Personally I think there might be an advantage here in the UK of ME not being included in the highest risk category in relation to Covid-19. Certainly for myself it is looking like I am not likely to be offered any vaccine before at least March. Though this means I will need to self isolate till...

Thank you @Trish, that very much answers my questions and indicates S4ME is very much doing all we can, and that when completed we can just hope NICE makes good use of the stakeholders’ and commenters inputs.

Thank you to all who are contributing to this process here. I struggle to get my head around larger quantities of information and gain an understanding of the overall structures even when as well set out as in the threads here, which means I have contributed much less that I would have liked, so...

Presumably the compilers of this check list believe they have selected items that distinguish between psychological conditions and biomedical conditions, and indeed it is theoretically possible that this might on average when looking at complete heterogeneous populations be true for some people...

Please consider supporting this #MEACTION petition in support of a young Swedish ME sufferer being threatened with enforced psychiatric treatment. https://act.meaction.net/page/25125/petition/1?fbclid=IwAR1vvV2JK6lLd-fm5s3GNtGc5aQHLEwlgZ9YxzqHQAWmArucalj9vshU5Jc

Just read the abstract as I can not face reading the article but several things jumped out: - is there any progress in testing treatment approaches, given the majority of patients would suggest the approaches currently provided by specialist services are worse than no intervention at all? - are...

I just wanted to echo the other comments praising this Rapid Response. It has the main information expressed clearly and concisely. Indeed my initial personal reaction was one of happiness to see this important information in print, outlining what we do and what we don’t currently know. However...

Do we know yet what the outcome measures are? The above wording suggests they are already specified. Presumably we can be reasonably certain they are subject self ratings or questionnaires.

Sorry a bit of a digression, but in relation to vaccines and ME, we don’t have systematic data but my subjective impression from various forums is: - many people with ME have no adverse response to any vaccine, possibly this is the majority, at least more than half people self reporting on...

I perhaps have trouble spotting mild brain fog because it is a norm. It is only on those rare occasions when I don’t have problems that I realise how impaired my normal cognitive functioning actually is.

Though subjectively I am not sure I can relate to what you describe as a sensation of ‘sore lungs’ in relation to a ‘good night’s sleep’, I do relate to it as a symptom of PEM and periods of worsening overall of my ME. However, I do think that often many of us wake from a ‘good night’s sleep’...

Do we need a description that combines both the ideas of an envelope and a threshold? Triggering PEM can be a specific point or threshold in a single activity or it can be a cumulative effect of a number of individually sub threshold activities within our overall energy capacity or envelope...

I don’t know if this is relevant, but it is interesting to see that funding for ME research is about the same as for alcoholism. Alcoholism is a condition which is considered self inflicted where the sufferers are blamed. It is also a condition where financial benefits are often denied to...