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...
Click to expand...
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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.
…
Click to expand...
 
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?
 
So Dr Janet Scott says there has been a clinic in Glasgow for years, but I thought there had only been one specialist ME person, a nurse in Scotland for a long time.
I have vague memories of an MEAction Millions Missing Event with two people dressed up as pandas. The point, at the time being: There are more pandas in Scotland (2 at the Zoo), then there are ME specialists, ie one nurse.

Or maybe that was just a weird dream....?
 
MEMarge said:
So Dr Janet Scott says there has been a clinic in Glasgow for years, but I thought there had only been one specialist ME person, a nurse in Scotland for a long time.
I have vague memories of an MEAction Millions Missing Event with two people dressed up as pandas. The point, at the time being: There are more pandas in Scotland (2 at the Zoo), then there are ME specialists, ie one nurse.

Or maybe that was just a weird dream....?
Click to expand...
The former homeopathy hospital provides services for ME / CFS and other conditions, including LP.
Woo central
 
Amw66 said:
The former homeopathy hospital provides services for ME / CFS and other conditions, including LP.
Woo central
Click to expand...

How was the Scottish Hom. Hospital renamed? Has it the same name as the Engish renamed one? Anyway I suppose these Long Covid merger-clinic "strategies" must be evaluated - I expect independently - by a national research platform, since these strategies seem to be offered as therapeutic treatments.

Adam pwme said:
(click on the arrow above to find the broken battery video giving the BBC interview with Dr Scott and a patient in need of virtual reality)
Click to expand...

- where virtual reality is the only NHS contract in town, it has a sure-fire monoply, as did ME/CFS rehab clinics

I was wondering, could this face-to-face Glasgow ME/CFS service be a service extended to ME/CFS patients by a Long Covid clinic in Glasgow, maybe one of the forerunners of these newer clinics merging the 2 conditions as if either:

- co-morbid or

- one and the same or

- one being the severe form of the other or

- one then exacerbated by the other (and vice versa) or

- whichever, correlating with repeat infections

These optional coded definitions will be an interesting read as provided in the format and guideline for the referrer assessments, the referrals, and the intake assessments

I note that Dr Scott adds - in her BBC interview - that there will be provision for a face-to-face ME/CFS service if needed, which I take to mean where and when its needed

Question being, is this face-to-face service available from a doctor with what knowledege of ME/CFS, or from some other "needed" clinician said to be a "specialist" in ME/CFS. but:

- distinctly not a specialist as one understands the word "specialist" to mean: qualified as a hospital consultant or at that level. Maybe specialist in the variation of standard rehab & CBT

So yes, a duke or an earl might be demoted to a christian name, King can become a surname, but this is the NHS whiuch delivered the demotion of "specialist" to mean any "therapist" in a dedicated clinic.

The reason for this question is:

* the provision of this new service - with its option(s) on face-to-face service - was much appreciated by the patient whom the BBC also interviewed.

She was very re-assured because there of events which GPs might not recognise, as did sadly happen to her in the past, so put her off GP consultations. Dr. Scott reported such aversions.

But now this patient can iroutnely take new symptoms, which might or might not be ME/CFS, into a real specialist consultation, and if need be see the specialist "face to face".

Eg for a phsyical examination (by a doctor).

The reason given for a primary care service to be, as launched, predominantly online for all initial consultative purposes, is because of NHS coverage still falling short (like fuel, water and comms coverage) in all the remote isolated rural districts across Britain

- exactly where the MEA app, and all the other traded apps are being so heavily promoted, since these still need a monoploy to be fully appreciated (by people with no other options) so won't go down so weell, in more populated, NICE-compliant areas

- all due to rural staff shortfalls for clinics, home visits, outpatient transport, district nurses and home helps. Like the rural shortfalls of plumbing, power-grid, mobile fone, cable and wi-fi coverage also taking years to catch up (across the world wherever out-sourced to commerce)

But maybe Wales in particular developed another problem with byzantine reluctance to cater for the isolated or house-bound
 
bicentennial said:
- exactly where the MEA app, and all the other traded apps are being so heavily promoted, since these still need a monoploy to be fully appreciated (by people with no other options) so won't go down so weell, in more populated, NICE-compliant areas
Click to expand...

So did Dr Scott mean it in 2023 when she told Parliament that we must ìdevelop experts in long Covid, which means seeing the patients, so that we can come up with the right studies, and the right questions to move things

ì from characterising - which is what we did in 2020 ñ on to, as Professor Doiminczak says, understanding the underlying aetiology and then providing proper management stt=rategies and treatments"

I look forward to an adept and independent evaluation of PROMS on offer (patient-reported outcomes), including the patient reports on the outcomes of the outcomes of the clinic assessments and toolkits).

How might these researching evaluation-platforms be evaluating PROMS and all other forms of the MEA promotion in rural Scotland - before buying into any of it be that MEA endorsed or, like Russell Fleming and his H4ME team, unresponsive at arms length, for which the MEA won't be at all responsible let alone respond

I expect prompt disclosure of such national research programmed method for evaluating these ìtreatmentî therapies aka strategies, since these treatments purport to treat ME/CFS as if NICE compliance is the new contractual benchmark, but:

- these homogeneous clinics still seek to rebrand and renew a monopoly on ME/CFS contracts 2006 - 2026, yet none were able to collect any validating clinic data beyond their own selected and directed patient-reports

I also expect prompt disclosure by the MEA promotion, and by its regulation authority. Prompt disclosure of the applications for registration, disclosing also - any actual registration agreed before offering it to NHS commissioners.

I have big problems with systems which do not tell me if I am dealing remotely in virtual
 
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