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I don't think trying to gather lots of signatories would be a good idea here. there are too many competing political interests. At this stage I am not sure that a signed letter is the way to go in fact. I have been asked not to pass on information from what has been said at ForwardME meetings...

My understanding is that Fluge and Mella noted improvements in cancer patients and then did a small, but controlled and blinded phase II study (with open label extension). The pilot Daratumumab study did not have a placebo group but it was set up in such a way as to provide some useful...

Hi @AR561. I think you will find a general agreement here that 'functional' is deliberately used to convey different meanings to different people as a way of manipulating patients by doctors to give an impression of knowledge that is not there. As a doctor I would never want to use it. Quite a...

I think the key distinction may be between 'provenance' and 'good provenance', the former just meaning 'where it is from' and the latter 'coming from a source that suggests reliability'.

Biomarker can mean pretty much whatever you like - a statistical population marker or an individual marker. I would never bother to use the term and I think Holgate might do well not to, since it obviously causes confusion.

Isn't that back to front. Suret blame comes with denying a medical explanation of symptoms?

I agree. I put it to the DHSC that a complete change of format was needed but there was no acknowledgement. The prosed model would probably cost no more. A large number of unnecessary salaries for useless sessions assesed by equally useless PROMS could be cut.

If by provenance you mean where is it from, I assume it is genuinely from Bateman Horne. If you mean quality assurance then, having just looked through, I think it is terrible. It is a sort of BACME Guide to Therapy for biobabblers. It rambles on about politically correct concepts and then...

Fair enough. Added in.

No.

Taking Robert's list as a very reasonable looking framework for what seems to have emerged as a near consensus, not just here but talking to physicians elsewhere, I wonder about some tweakings: 1. A service primarily delivered by a hospital-based physician 2. Dedicated nurse practitioner...

done

This seems a very useful idea, but looks all too much like a box tick of multidisiciplinary team names, including, thank you very much, a palliative care member for when you're just about to die. It would be good if there were lists that actually covered specific care items like glasses and...

ForwardME was set up by the Countess of Mar in October 2008. BACME was set up in 2009.

I am pretty sure tat ForwardME existed before BACME. Which of course adds irony to the BAACME name.

But doesn't this way of doing things play into the power struggle / lack of trust scenario? Are readers going to be reassured ? Why not just say that health workers have different views on the best way to deal with things. Our view is... Then those who encountered psychologisation can think...

Well here it is folks. Get posting. I think they need to be referable to a clinic with a physician in a standard medical speciality (not rehab) for an assessment of their problems with a waiting time of around 2-3 weeks on average. Edit: a current suggestion is below and in Word: Suggested...

I wonder what message the reader is supposed to take away? A sympathetic counselling psychologist might be the best option for someone with LC. Nobody else much can help. Would readers be put off? Is it really sensible to have these 'stories' rather than a plain English explanation of the...

I don't know how I would react to this if I was a young person still ill months after Covid 19. But what comes across most to me is the way everything seems to be pigeonholed into sociopolitical boxes and a sort of 'omnispeak' that is supposed to appeal to 'the masses' yet somehow forgets to...

Maybe we should have a thread on what people with ME/CFS need in the way of service - with details of practicalities? People can make suggestions and we can try to agree what is realistic. It might be useful to get input from physicians like Amolak Bansal and Saul Berkovitz who in the past have...