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Sorry I have not yet pulled these comments together. Have been trying to do some gardening this week, as have had more help available, but as always pacing issues. I am also trying to get my head around my cognitive limitations in relation to collating and integrating information; when I...

A potentially very important study as it stresses how essential using the right diagnostic criteria in ME/CFS research is and that studies using such as the Oxford criteria that is unable to distinguish between ICF and ME/CFS are totally irrelevant to service planning for people with ME/CFS...

Is their any mileage in asking the vocal supporters of the Bristol Lightening Process study to comment on this decision? As well as asking the University itself to comment on how their study got ethical approval when in Norway it presumably would have been considered unethical, is it worth...

Heartening to see a meaningful account of PEM and its significance coming out of Germany.

It is an interesting point. A friend’s daughter has Long Covid with very ME like symptoms and is pressing to move onto an ME diagnosis. She is using the term PEM, and has insights on pacing, cognitive issues, orthostatic intolerance and hypersensitivities that took me well over a decade to...

When Esther Crawley published her Lightening Process study in 2018 I thought great, the whole methodology of open label trails with subjective outcomes in ME will be seen for what it is, this study being the ‘reductio ad absurdum’ of this approach when it purportedly endorses such a patently...

Thank you, a very helpful response. I despair that so many papers like this are still being published without a basic understanding of experimental design, repeating basic logical failings that we were taught to avoid when I was a psychology undergraduate over forty years ago. Real life...

I just did a web search as I am thinking the same. There were lots of links to popular newspaper articles saying that the Indian variant is more readily caught by children, but I did not find any more serious sources.

We have discussed this in previous thread(s) I think. The University of Bristol has this group and possibly another relating to clinical research and the University’s associated publicity highlight Prof Crawley’s work with ME and her research in general suggesting she is a national or even...

‘Yes, but ... ... ...’ I think our response to the UK draft NICE guidelines indicates we collectively could produce our own suggested ideal model of services for people with ME, and even just a rewriting of those comments as a stand alone document rather than numbered responses to something...

Was my hope for Covid studies actually looking at sufficient physiological detail etc to be able to differentiate those who will develop Long Covid symptoms and those who go on to develop ME like symptoms from those who readily recover over optimistic? It seems prospective studies like this are...

Are these authors working on the principle that if a symptom persists beyond any acute condition after the end of the initial cause, eg an active viral or bacterial infection, it is by definition ‘functional’ or ‘somataform’? Certainly they do not seem to think that an initial biomedical trigger...

Not only has their work been peer reviewed but it has been peer reviewed by researchers equally “eminent and free of selfishness or bias”. And we know that this is true because the peer reviewers are all from the same grouping of academics working in over lapping university departments and with...

Isn’t the problem that we need an additional mechanism to explain why some people improve, others remain stable, others experience relapses and remissions and yet others experience on going deterioration. I am not sure this model easily fits the course of my ME without postulating other factors...

Struggling with reading comprehension this evening so may completely have got the wrong end of the stick, but are we looking at two possibilities for long term conditions The incorporation of virus RNA into the individual human’s DNA which is then replicated by normal cell devision. Presumably...

Isn’t the problem finding viruses lurking undetected long term that they are dormant, so could this explain an ongoing symptomatic condition such as ME? There are active viruses such as Hep C that can be active on an ongoing basis, there are viruses that can remain dormant in difficult to...

Though Dr Horton was helpfully outspoken in the British press about the acute aspects of the pandemic (it really peeved me that I had to agree with what he was saying), until he acknowledges the failings of the PACE trial he is leaving many people with Long Covid at risk of harmful misguided...

Although in principle I support the use of pooled data nationally to improve services, it is also a matter of trust. I do not trust the current UK government to not make use of this data against my interests or not to sell it to private companies that will.

It must take skill to so persistently answer questions that weren’t asked and to ignore those that were. The BPS advocates seem to have taken up with glee the assertion because ME is defined by self reported symptoms it must be appropriate to research it only with subjective questionnaires. To...

Thank you for all the comments, hopefully I will be up to having a go at incorporating them all in a redraft over the next few days.