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That word had already been in the document I am writing. It was reading through NICE NG206 and the BACME resource that made me think 'agreed' was where it was hidden in plain sight.

Yes, I fully see the sense of an agreed care plan if it is something yo are being provided with - wheelchairs, suitable environments etc. My puzzlement is at an 'agreed care plan' that simply consists of the patient agreeing to get up and walk about a bit more and then a bit more and...

There are about 4,000 new diagnoses of Parkinson's in the Netherlands each year. Radboud is a big medical centre so might see several thousand cases over 5 years. We all probably meet serious stress once every 5 years. If you narrow down the time period to a week then one or two over a few years...

So maybe the doctors should be banned since all these beliefs must have been caught off doctors? It would be particularly disturbing if transfusion recipients came to believe that their symptoms of recurrent haemorrhage were psychosomatic.

Seems as up as mine, if not upper!

I have got a bit confused but Dania has messaged me the protocol, which says what I have already read so I guess we were already given the background information in the protocol sent for ethical approval. I think Dania is uncertain what can be posted publicly. My worry as for the toolkit study...

It is not clear to me that this patient was in the 'National Inpatient Centre for Psychological Illness' that is part of the Leeds ME/CFS service.

Indeed. But the bits about agreed plans seem to be specifically about what has been agreed that the patient will do in the way of activity.

It seems we don't get a protocol?

But why does the provider need to agree? If I saw a patient and recommended a more powerful drug and they said no thanks I wouldn't need to agree or disagree. If they opted for my suggestion then it wouldn't make sense for me to 'agree' to that.

That is rather what David Tuller and I concluded. In the USA this sort of phoney 'agreeing' doesn't work because people aren't prepared to be manipulated in the same way and can look elsewhere.

But do you think that actually means anything? It sounds to me like the doublespeak we hear all the time. It sounds as if it is all for the benefit of the patient but it is actually for the benefit of the professional. Healthcare is not a collaboration. It is providing a service. The patient's...

Yes, although in that regard it is interesting to note that BACME says that you can opt out of the agreement and opt in again at any time - implying without penalty.

But that isn't logic to me. You need to find a diet that suits the patient. If they the do not follow it then it is a pity but it was still worth giving the advice because they might have followed it. You wouldn't say ' well, I'm not going to bother to tell you what to eat because you won't...

There was a general sense with the NICE Guideline that the de-recommendation of GET and CBT was the crucial step forward but that there was still a bit of wiggle room for pacing-up or GET-lite 'activity plans'. I can see the justification for including some suggestions about supporting people in...

Reading through various documents, including the nice 2021 Guideline and the 2024 BACME resource for severe ME/CFS I continue to trip over the term 'Agreed Care Plan' What exactly does the word 'agreed' mean here? If the person is being provided with some form of treatment such as a drug or a...

For rituximab: in my experience no. We treated 5 seronegative rheumatoid cases in the first cohort of 22 and none responded. We did get responses in patients without autoantibody but other evidence of B cell dysregulation though - like high Ig levels. That is pretty much what we expected since...

Thanks. I need to look in detail. It seems an intelligent approach. The question is whether it can induce complete reversal of the process and Long term remission. It might be a way to unwind the autoimmune loop by attrition rather than by 're-booting' as for traditional B cell depletion.

It might but we simply don't know that cyclo is doing anything useful. A major contribution that Fluge and Bella made to clinical research in ME/CFS was to show that if you enrol people with ME/CFS into drug trials, at least in their hands quite a few are likely to appear to show very major...

Nobody knows but we are talking about doses that kill a high proportion of all types of immune cell including quite a lot of plasma cells. Doses that kill you unless you have stem cell rescue.