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Thank you @Trish and all involved for all the work gone into this letter. It is hard to see how anyone with a modicum of sense could continue to ignore these points. One can only conclude that Cochrane management are now deliberately avoiding any meaningful consideration of these issues...

Me too.

We desperately need a good natural history or just a basic description of the range and variations of symptoms in ME and of associated/co-occurring conditions. I am not sure even people with ME have a full understanding of what ME can involve for others. Certainly a lot of us have symptoms we...

Very much this.

I thought the current estimates of those with Long Covid meeting the diagnostic criteria for ME/CFS was in the region of 50%. It is perhaps not surprising that Dr Miller continues to echo the BACME party line of emphasising recovery and trying to sneak in some form of GET disguised as...

Thank you @Andy for raising this with the MEA, I had foolishly assumed that Sarah Tyson would have returned to try to resolve the issues once she had reflected on this. But I am more disappointed if the MEA are deliberately sidetracking this too.

I think Lord Simon would imply a hereditary title, whereas for a life peer these would be the options: The Rt Hon Lord Wessely of Grabalot, or The Rt Hon Simon, Lord Wessely of Grabalot (or the short form Lord Wessely) The Rt Hon Simon Wessely, Lord Grabalot (or Lord Grabalot for short) See...

They had supposedly put the data on an ‘open access’ platform, but last I heard no one had managed to down load any of it. Does anyone have any up to date information?

Great if this becomes better understood. Potentially a game changer.

I was wondering if death was considered a psychosomatic symptom by the authors.

It will be interesting to see what happens. It does feel that things have moved on from articles being withdrawn and journalists offending the BPS deities getting the sack. Weesley and Sharpe must be itching to respond, but also must be aware of the risks this involves. I suspect either others...

Good to see this in the Guardian, given their historic support for the BPS crew and associated patient bashing.

Fortunately I have escaped the sleep police, and since I have taken ill health retirement I find what works for me is just let my sleep patterns do what they want. For me I snooze during the day if needed, I use screens during the night as distraction when I can’t sleep, and generally sleep or...

I tend to comment before reading fully, and have only just looked at the reference pulled out by @ME/CFS Skeptic above This 2001 letter, co authored by our old friend Simon Wessely, is unfortunately behind a pay wall, but on the basis of the abstract along with the authors and the date of...

First I have a conflict of interest to declare in that I most likely have an acquired non coeliac gluten intolerance, though I can not be certain as I was already on a gluten free diet when tested for coeliac which I did not realise at the time invalidates the test and makes a false negative...

Having more papers with different author lists creates the idea of a wider movement rather than a single group of researchers pushing forward under the lead of just one high profile academic. Also even Prof Crawley must be aware that she has become toxic at least to the patient community so it...

This is definitely bad science and it would seem that Walitt, at least, went into this study wanting to find that ME fitted into his own psychosomatic/functional preconceptions (perhaps regardless of any outcomes), but do we have a ‘preponderance of evidence’ demonstrating intentional...

My knowledge of MS is very much out of date, but my understanding is that its initial presentation can be very very variable and more than one episode is required for a formal diagnosis, making it inevitable that a lot of not yet understood neurological issues will initially be considered as...

Prof Crawley had started a number of research projects looking at new psychological interventions (modified CBT) to use with children who were not cured by her clinics previous intervention, even though by her previous claims such children didn’t exist. Is it a mixture of her realising that her...

I am surprised how much people scoring so low on SF36 seem able to do. Does this reflect issues with SF36 scale? I did score myself several years ago on the SF36 scale and though I can’t remember the exact score I was in the severe ME range. However I could not imaging being able go to...