This is the MEA s proposal . Given they seem to be working hand in hand with BACME and app developers it's a bit like the King is dead , long live the King .
Scottish ME/CFS clinical service provision
- Thread starter Amw66
- Start date
Have you been in Touch with MEAction Scotland? They've been having discussions with Scottish Parliament for years.
Note from AfME - they did not support the grant application as they could not resource it.
She posted that she'll be interviewed on BBC Radio Scotland today (?) so we may get a better sense. She may be OK but there is certainly cause for circumspection, given these posts four and three months ago —
Jonathan Edwards
Senior Member (Voting Rights)
OMG
Geez
And where has she suddenly come from and how has she suddenly landed in this spot where she will develop a service? I’m not following closely but it seems the announcement has come out of nowhere but, like when we had some of the app and other plans, that doesn’t mean it’s not because it hasn’t be being worked in and just being deliberately kept quite whilst that was happening
rvallee
Senior Member (Voting Rights)
I am not joking that we would be better served by philosophy graduates.
Absolutely not kidding, not even a little bit.
Responding to the question in the News from Scotland thread.
Co-author of two recent papers —
Daily stress and worry are additional triggers of symptom fluctuations in individuals living with Long COVID: results from an intensive longitudinal cohort study (2025)
What Can We Learn Four Years On? A Multi-Centre Service Evaluation Exploring Symptoms, Functional Impact, Recovery and Care Pathways in Long Covid (2025)
Co-author of two recent papers —
Daily stress and worry are additional triggers of symptom fluctuations in individuals living with Long COVID: results from an intensive longitudinal cohort study (2025)
What Can We Learn Four Years On? A Multi-Centre Service Evaluation Exploring Symptoms, Functional Impact, Recovery and Care Pathways in Long Covid (2025)
I was right to be worried .
Nightsong
Senior Member (Voting Rights)
bicentennial
Senior Member (Voting Rights)
Below is a a lost and found post (since my browser got seized up some days ago when 2 hours sleep was not enough here either). Meanwhile this discussion was continued on the new thread for:
Scottish ME/CFS clinical service provision where:
2 of Dr. Scott's recent research papers are linked - re the daily stress and worry which exacerbates illnesses, and her multicentre service evaluation
National and international research programs bring many disparate applicants together. My picture of the post-pandemic research programs is extremely skimpy, not even patchy.
I could use a precise map of the lot of it. But apart from the shining examples, much of the English establishment still prefers not to distinctly map itself to its public.
So I remain provisionally loyal to Dr Scott - partly due to her 2023 mapping of this research infrastructure in the Scottish LC Inquiry.
I am looking for her recent affilations and recent research, its a lot to cover. Like others before her she has mingled with all sorts, including the Sivan and Greenwood pairing out of L... (possibly the same centre once notorious in the playing fields of MSBP - now FII)
She was already working with Pell and others on the Scottish research infrastructure, and before that on the concerted efforts to alleviate post-Ebola Syndrome which she loyally compared to Long Covid in her own terms eg:
- crippling, gaslighting, stigma, exclusion from health services for a variety of similar reasons and unless allowed self-referral (as in Wales)
- the tendency to withdraw of research funding mid-stream upon surges of other lingering contagion (as upon finding virus in post-Ebola).
In LC particulars she asserted the need for face-to-face clinics, integrated with research, and she I think she asserted that the rehab program was not suitable for all LC cases.
Reading this in 2025, I thought her quite wonderful to assert all that to her Parliament
I guess "LC" still included cases of organ damage without post-viral liability
I found that conflation dire and sneaky. But I admit I do perceive rehab programs for post-viral liablity as a rash. And as an endemic outbreak of rash fringe rehab still aspiring to become a pandemic outbreak
Scottish ME/CFS clinical service provision where:
2 of Dr. Scott's recent research papers are linked - re the daily stress and worry which exacerbates illnesses, and her multicentre service evaluation
National and international research programs bring many disparate applicants together. My picture of the post-pandemic research programs is extremely skimpy, not even patchy.
I could use a precise map of the lot of it. But apart from the shining examples, much of the English establishment still prefers not to distinctly map itself to its public.
So I remain provisionally loyal to Dr Scott - partly due to her 2023 mapping of this research infrastructure in the Scottish LC Inquiry.
I am looking for her recent affilations and recent research, its a lot to cover. Like others before her she has mingled with all sorts, including the Sivan and Greenwood pairing out of L... (possibly the same centre once notorious in the playing fields of MSBP - now FII)
She was already working with Pell and others on the Scottish research infrastructure, and before that on the concerted efforts to alleviate post-Ebola Syndrome which she loyally compared to Long Covid in her own terms eg:
- crippling, gaslighting, stigma, exclusion from health services for a variety of similar reasons and unless allowed self-referral (as in Wales)
- the tendency to withdraw of research funding mid-stream upon surges of other lingering contagion (as upon finding virus in post-Ebola).
In LC particulars she asserted the need for face-to-face clinics, integrated with research, and she I think she asserted that the rehab program was not suitable for all LC cases.
Reading this in 2025, I thought her quite wonderful to assert all that to her Parliament
I guess "LC" still included cases of organ damage without post-viral liability
I found that conflation dire and sneaky. But I admit I do perceive rehab programs for post-viral liablity as a rash. And as an endemic outbreak of rash fringe rehab still aspiring to become a pandemic outbreak
Last edited:
Jonathan Edwards
Senior Member (Voting Rights)
She presumably came with the wind that brought in 'Long Covid clinics'.
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.
bicentennial
Senior Member (Voting Rights)
(Edit - the link to the Long Covid Inquiry report now works)
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 ME/CFS clinical service provision thread
(edited this link so now it works)
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.
Edit - so the link to the 2023 Long Covid Inquiry report now works
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 ME/CFS clinical service provision thread
(edited this link so now it works)
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.
Edit - so the link to the 2023 Long Covid Inquiry report now works
Last edited:
hotblack
Senior Member (Voting Rights)
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
Senior Member (Voting Rights)
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
I think she already has funding for the platform
Jonathan Edwards
Senior Member (Voting Rights)
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
Senior Member (Voting Rights)
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?
@PhysiosforME
Do you have any input?