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A great result, thank you to @Trish and everyone involved for the work put into this. Though in an ideal world they would have not needed this prompting, credit to AfME for acting decisively on this. Shame that the MEA are not acting as proactively in relation to their PROM project that also...

Isn’t part of the problem with CBT as often currently formulated that it was seized upon as part of the process model of health care? You define the process and then blindly apply it to everyone. Sorry I am struggling to remember the correct terms. Perhaps unfairly it is what I characterise as...

My concern is that it is only meaningful for the very mild who are the only people with ME served by most specialist services, for every one else it is ‘bust and more bust’ with nary a ‘boom’ in sight.

Sorry my brain is not currently able to process this thread, but I do agree that there is a strong chance that to understand the aetiology of ME we will need a new perspective, that may not sit comfortably with current medical thinking. So well done @FStevenChalmers for pursuing this model.

@PhysiosforME illustrate that Physios can get (ie understand) ME and what their role can be. [sorry cross posted with @Trish ]

As always, a well thought through blog post with some very important points.

More of the same. So we still have no idea which of our complaints they are investigating and which they are not. This tells us nothing about what the IAG is or isn’t doing, over and above any complaints about Cochrane themselves and worse no indication that they are addressing the ongoing harm...

Thank you @tuppence, an important perspective.

Thank you to the Committee and everyone for persisting in this head butting of the brick wall that is Cochrane. After all these years of them refusing to objectively evaluate the evidence or respond meaningfully to valid criticisms (apart from that brief spell when the previous Editor in Chief...

Colleen Steckel provides a useful overview of information and articles relating to the inquest, see Inquest into death of Maeve Boothby O’Neill Cause of Death - Malnutrition Because of ME...

Does any one else find this chilling? Given we are looking at a neurodivergent population can we know that what is being labelled ’FND’ here corresponds to what is labelled ’FND’ in other populations, but more worrying, if like ME/CFS, people on the Autistic Spectrum are at higher risk of other...

An excellent article, Claire Every is real developing a good understanding of ME, but will the people that need to read this ever see it or if the do take it seriously.

I have never understood how believers of the deconditioning model think it can explain the variation within ME. I have a relapsing and remitting form of ME, though over the thirty years of my ME each subsequent relapse has been more severe and each subsequent remission slower and more limited...

It is a decade since getting a bus has been an option for me.

The Baxter et al research by it nature only dealt with patients who survived the ordeal of health service disbelief and inertia, how many people do not survive this, but die of malnutrition and dehydration? PEG feeding ought to be considered after just a few weeks of NG tube feeding, not months...

Such a powerful and compelling account. Also crying.

Do you mean Leeds?

In theory the individual questions are irrelevant, what matters is how your answers compare to other people completing the same questionnaire. In theory all the questions could be about flower arranging or building or horoscope usage as long as the results differentiate in relation to the trait...

‘Feeling better’ is no doubt a good thing, and I would be happy if I could feel better all the time, but that is not enough. I could ‘feel better’ a lot of the time if I could get enough rest and avoid PEM and avoid anything else that might trigger PEM such as being upright or light or sound, as...

I thought I had previously read the Leeds inpatient service had shut, however it seems that it is still there (see https://www.leedsandyorkpft.nhs.uk/our-services/national-inpatient-centre-psychological-medicine-nicpm/ ) though the webpage has not been updated since 28/12/22. It’s title ‘the...