Scottish ME/CFS clinical service provision

bicentennial said:
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
Click to expand...

I would like to give her the benefit of the doubt, however we seem to be heading down the BACME route with nothing learned, and she seems to have swallowed the FND pill without much question. Perhaps chasing the research money means you have to be seen to be agreeing with certain people to gain the funds.

I don't doubt that she genuinely cares, and many are reserving judgement at the moment. I havn't caught up with the Radio Scotland piece yet ; we have had many people who genuinely cared before who were unable to see wood from trees and left a legacy of harm.

The locomotion study she keeps using as a tag on social media has much to be concerned about. It features on a couple of threads here.
If she was mentored by Bearsdworth and Peto , there is much to be cautious about.

Tilly

Post in thread 'General news about Fabricated and Induced Illness syndrome (FII)'

SNT Gatchaman said:
Wider even than that awful context. It's how any parent and any child is viewed: as an unreliable witness and reporter of their own experiences. All countermanded by the unevidenced ideas of professionals who reckon they know what's going on.

Inevitably longitudinal studies are going to show the severe damage done to a generation of children. Eg just on the cardiovascular effects, let alone neurodevelopmental/accelerated neurodegenerative: Post-Acute Cardiovascular Outcomes of COVID-19 in Children and Adolescents: An EHR Cohort Study from the RECOVER Project (2024, Preprint...
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bicentennial said:
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
Click to expand...
From The Covid 19 Recover report (2023) - the rehab model is alive and well. Despite all the evidence that it is neither effective nor harmless.
I suspect that nothing has changed much since then, but now there are funds.
I would love to be proved wrong.

Janet Scott: My colleagues in health systems research hit the nail on the head: we need clear and well-publicised pathways. However we do that, whether through primary care or a combination of primary and secondary care, there has to be a clear way. We do not have a lot of funding for the large geographical area of the Highlands, so there is some reticence to go out and really publicise services because we already have quite a backlog of people to see and we are aware of the huge unmet need out there.

We know that, if we properly publicise services, there will be a deluge that we are not equipped to cope with.
We have people sitting at home needing care and we do not have the pathways to deal with it, so we need to ensure that those pathways exist.

We need to ensure that, if a patient needs selfcare, face-to-face physiotherapy or occupational therapy, a secondary care advocate or a general physician, they can access those facilities. Then, we need to publicise it. We do not want to publicise what does not exist and, at the moment, we do not have a clinic to see those patients who need one.

We do not have a face-to-face physio service to give to those patients who need it. The need exists—we hear that from patients all the time. It is not that every patient with long Covid needs all those services any more than every patient with chronic obstructive pulmonary disease needs to come into hospital three times a year. However, some patients with COPD need that and some 21 9 MARCH 2023 22 patients with long Covid need secondary care. You need somebody to advocate to ensure that they get seen by a postural tachycardia syndrome expert or an endocrine expert, get assessed for mast cell activation syndrome or have whatever done that we will do in order to optimise everybody’s health.
 
www.bbc.com

NHS Highland to offer virtual chronic fatigue syndrome service

NHS Highland plans to provide the help as part of its long Covid support service.
www.bbc.com www.bbc.com

NHS Highland is to launch a virtual support service for people with chronic fatigue syndrome.
Also known as ME/CFS, an estimated 50,000 Scots live with the condition but many find it hard to access treatment. Extreme tiredness is among the symptoms.
NHS Highland said it was expanding its long Covid service to offer online consultations to sufferers in the Highlands and Argyll and Bute.
From spring, patients referred by GPs will be offered personalised strategies aimed at alleviating their symptoms.


Dr Janet Scott, consultant physician on the health board's Covid recovery service, said a team of medical professionals would discuss a patient's individual needs and provide a treatment plan.
"ME/CFS can be a really severe problem," she said.
"Our role is to allow patients to enjoy life and remain part of society."
She added: "Everybody needs something a bit different."
NHS Highland said its long Covid service had seen about 300 patients over a two-year period.
In September, the Scottish government announced annual funding of £4.5m for health boards to invest in specialist services for chronic fatigue syndrome and similar conditions.
…
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Dr Janet Scott, consultant physician on the health board's Covid recovery service, said a team of medical professionals would discuss a patient's individual needs and provide a treatment plan.

Presumably 'medical professionals' means 'not actually doctors'. An individualised treatment plan?
 
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