Scottish ME/CFS clinical service provision

[bicentennial]

She came in with the Scottish Long Covid Inquiry in 2023, on the 9th of July being the day after she started as a consultant in infectious diseases and clinical pharmacology, at Raigmore Hospital, in Inverness.

She was also part of the LC team, and principal investigator of the LC multidisciplinary consortium, "optimising trewtments and services across the NHS - LOCOMOTION - study"

And she was an affilate senior clinical lecturer at the centre for virus research in Glasgow where she worked, and also she had studied post-viral conditions there for 8 years

She had already accumulated a lot to report from the evaluation of LC research programs and clinical services, in question

The link to this Inquiry is in this post on the Scottish News thread -

I am not being funny, I just cannot copy and paste links until I have salvaged my clipboard with the Welsh Senned draft (else its all lost), so I must type everything in from scratch

The Inquiry report is worth reading. So I attached a small file below, with an extract of her report on the clincial research and service provision in question. She starts her evaluation on page 8 of the Inquiry .pdf.

She followed the Professors Duncan and Cooper (page 7) who want more research to confirm that few LC patients could use self-management, rather give them the other "therapies"

She took a dim vew of remote services - she wanted face-to-face, hands-on clinics to do research, otherwise Scotland might be excluded eg from the Imperial College platform for LC clinics doing drug trials, STIMULATE-IP

I am still trying to see if the researchers then informing Parliament meant more than they said.

 

[hotblack]

To me this illustrates how misguided it is to try and 'capitalise' on the interest in Long Covid and share resources for 'post-infective conditions' in terms of getting service provision. The Long Covid clinics have been taken up by doctors with no idea of what they are handling - mostly people who didn't have a focus on anything else much I suspect.

Agree. And it’s one of the things that those involved in the MEA’s health and social care team have tried to use to explain or justify their approach when questioned on it. Utterly misguided.

 

[obeat]

My understanding is that Janet Scott is trying to create a four nation clinical trial network. I don't know if this is for trials of antihistamines and other trendy stuff. There are clinicians in each country involved but I don't know who?

I think she already has funding for the platform

 

[Jonathan Edwards]

I think she already has funding for the platform

It is the sort of thing that gets funded without anyone having any real idea where it will go. We had a 'platform' set up at UCLH for trials that after a few years got mothballed.

My experience is that when you think of a trial really worth doing you just get on with it. The hard part is thinking of a trial worth doing.

 

[obeat]

I think the process is now unstoppable but whether there's any options to influence outcome measurements that are used e.g. FUNCAP

@PhysiosforME
Do you have any input?