News from Scotland
- Thread starter Kalliope
- Start date
See my post just before yours. It's worth clicking through to the MEA document, but 'remote assessment' is still vague. A video call?
Again , severe at a disadvantage.
It's probably zoom as covering Highlands medically is a challenge . Phonecalls potentially - audio dial in on teams/ zoom are how pwME with less capacity have contributed to research / advocacy previously .
Access to symptom specific specialists will be worth watching - there is now I believe 1 pots specialist in Scotland in the Highlands .
Who will step into the breach - this looks like a potential pilot for PROMS and their app ....
Interestingly the patient input was from English areas , who would bring preconceptions re service provision based on their experience.
Could be a good or bad thing, but potentially better to start with a blank page
This is one that should be followed as it will form the model which will be rolled out elsewhere .
I wonder if the ME HASC liaised with the very active, well informed MEAction Sciotland Group that have had numerous discussios with the Scottish Parliament and key people involved in provision of health services.
Or have they just barged in and ignored local groups as in Suffolk.
Or have they just barged in and ignored local groups as in Suffolk.
bicentennial
Senior Member (Voting Rights)
My observation is linked with reference to the Scottish Parliament's Long Covid Inquiry. That needs a lot of quoting:
Long Covid Inquiry
Not likely since the Long Covid Inquiry examined and assessed rehab being unsuitable for some patients, with remote clinics being distinctly inadequate for clinical purposes, also distinctly inadequate for the integration of clinics with research. Dr Janet Scott et al gave this evidence.
But that didn't suit the MEAs unmet need to sell its oddly "validated" tool.
The statistical probability is very likely the adept MEA just barged in as in Suffolk.
Since it plainly decided to rule the market instead of serving the market.
Looks like it was unspeakably ashamed to be found - discreetly - mis-using Suffolk's co-production to promote its digital substitution
But it still can't validate the MEA-branded tool of its incredible trade.
It looks like its toolkit was approved by a sample of unrepresentative patients supposed to represent everyone else, inexplicably. It was ill-advised for marketing purposes aspiring to sophisticated national registrations, as a valid, highly regulated medical software device.
The toolkit was also "validated" by consulting wayward "specialist" clinics, still exempted from NICE compliance, still refusing to refer malnourished patients. So the renewal of their contracts had to be assisted by the MEA, BACME and 25%. In Scotland. Because its rural.
I see no NICE-compliant corrective advice from MEA's own dietician, and its 25% rep.
Long Covid Inquiry
Not likely since the Long Covid Inquiry examined and assessed rehab being unsuitable for some patients, with remote clinics being distinctly inadequate for clinical purposes, also distinctly inadequate for the integration of clinics with research. Dr Janet Scott et al gave this evidence.
But that didn't suit the MEAs unmet need to sell its oddly "validated" tool.
The statistical probability is very likely the adept MEA just barged in as in Suffolk.
Since it plainly decided to rule the market instead of serving the market.
Looks like it was unspeakably ashamed to be found - discreetly - mis-using Suffolk's co-production to promote its digital substitution
But it still can't validate the MEA-branded tool of its incredible trade.
It looks like its toolkit was approved by a sample of unrepresentative patients supposed to represent everyone else, inexplicably. It was ill-advised for marketing purposes aspiring to sophisticated national registrations, as a valid, highly regulated medical software device.
Development and content validity of the Clinical Needs Assessment for Myalgic Encephalomyelitis (CNAME)
Pre-print still being reviewed by Science for ME, here
"The main limitation lies in the representativeness of the sample.
Our sample was predominantly middle-aged women with prolonged lived experience who are moderately affected.
This is consistent with other large cross-sectional surveys of people with ME/CFS
so we are confident the sample is representative.
However, the recruitment methods may have biased towards English speakers who are active on social media and in ME organisations.
The main strength of this study lies in its large sample size, co-production with people with ME/CFS and clinicians and rigorous adherence to best practice research reporting guidance."
Pre-print still being reviewed by Science for ME, here
"The main limitation lies in the representativeness of the sample.
Our sample was predominantly middle-aged women with prolonged lived experience who are moderately affected.
This is consistent with other large cross-sectional surveys of people with ME/CFS
so we are confident the sample is representative.
However, the recruitment methods may have biased towards English speakers who are active on social media and in ME organisations.
The main strength of this study lies in its large sample size, co-production with people with ME/CFS and clinicians and rigorous adherence to best practice research reporting guidance."
The toolkit was also "validated" by consulting wayward "specialist" clinics, still exempted from NICE compliance, still refusing to refer malnourished patients. So the renewal of their contracts had to be assisted by the MEA, BACME and 25%. In Scotland. Because its rural.
Content validity of the Clinical Needs Assessment
"Discussion: For example, few services have dietetic input so the ability to address nutritional needs are limited
Anecdotally, some services would deal with this by developing relationships with other services to support referrals, while others would consider it beyond their remit.
There is an ethical and pragmatic dilemma about whether to ask patients about needs if the resources to address them are unavailable.
Not only could this raise unachievable hopes and expectations but also could give an inaccurate picture of how effectively the service was working within the resources available to them.
There is an argument that clinical needs assessments could be individualised to the services’ provision, i.e. to only ask about needs the service feels able to meet.
However, we advise against this, as it would limit the CNAME’s scope to support service benchmarking and improvement.
We urge services which are not resourced to meet some of the CNAME’s needs to investigate what resources are available from other services locally, so that patients can be advised and referred onwards, and/or to work with managers and service commissioners to develop services to address those unmet needs."
"Discussion: For example, few services have dietetic input so the ability to address nutritional needs are limited
Anecdotally, some services would deal with this by developing relationships with other services to support referrals, while others would consider it beyond their remit.
There is an ethical and pragmatic dilemma about whether to ask patients about needs if the resources to address them are unavailable.
Not only could this raise unachievable hopes and expectations but also could give an inaccurate picture of how effectively the service was working within the resources available to them.
There is an argument that clinical needs assessments could be individualised to the services’ provision, i.e. to only ask about needs the service feels able to meet.
However, we advise against this, as it would limit the CNAME’s scope to support service benchmarking and improvement.
We urge services which are not resourced to meet some of the CNAME’s needs to investigate what resources are available from other services locally, so that patients can be advised and referred onwards, and/or to work with managers and service commissioners to develop services to address those unmet needs."
I see no NICE-compliant corrective advice from MEA's own dietician, and its 25% rep.
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I believe that MEAction Scotland have been in touch with the clinicians from the LC service this month ( so a fait accompli) .
Elsewhere there was talk of a grant application by the LC lead to set up a platform for trials for treatments - establishing clinical support would feed into this.
Theres a £4.5m fund for long covid which was a political embarrassment as it wasn't being spent and has been prioritized and now includes ME/CFS So that probably has attracted MEA, Elaros, BACME et al.
bicentennial
Senior Member (Voting Rights)
The Government was reminded that this fund obviously needs to be an annual commitment. A new Lead had re-oriented the Long Covid Network, committing it to sustainable provision, with a broader post-viral remit.
So now its an annual budget - still open to a rehab remit. No doubt coveted by competing parties - MEA et al, and the FND cohort last seen courting the new Long Covid Network lead, Dr Scott, who was quite polite and by now assesssed it
I had judged Dr Scott upon her trusty report to the Long Covid Inquiry, and its provenance. After that she stepped into the political embarrassment, appointed to lead the LC Network, maybe to end its embarrassment, just before it was outed by the vastly distressed resignations of Long Covid Scotland & Long Covid Kids.
Their joint announcement is here. The LCS video for sharing is here. A detailed LCK statement by text is here. All this news, and more, on page 6 of this thread.
bicentennial
Senior Member (Voting Rights)
No, according to the news from Scotland, I think more steps forward than backward regressors can drag down. Its just not clear to me how Long Covid Kids and Long Covid Support got on with the new Long Covid Network Lead.
And if she is achieving what she set out to achieve in 2023, since everyone spelt out all the problems to solve. Surely Parliament is better informed than the MEA:
Maybe also the commissioners are so close to the edge they will not forget "Buyer beware". Plainly face-to-face, hands-on clinics are required.
The Scottish Long Covid Enquiry already examined this medical challenge in isolated rural areas. Obviously the trading MEA and trading partners determined a strategy to overturn the Inquiry's 2023 advice, then claim victory as if its all done for us
bicentennial
Senior Member (Voting Rights)
Big problem with bulk-processing systems requiring communication. Phoning or surfing into digital meetings requires technical know-how and technical support. Not available from the remote teams operating such meetings. They often don't even know if - or how - its possible to phone into a video conference.
Its luck of the draw if there is someone with extra technical competence on the team. Then people phoning in must be shepherded, and especially facilitated as they do not have any of the cues the surfers have. This too can go beyond the competence of teams offering remote meetings. Its a lot of trial and error
Such digital trial and error is vastly inappropriate as a national health service.
All sorts of severe conditions may also need help in the home to note and use entry codes for phone-ins, but these details do not concern greedy people trading in digital platforms on a post-pandemic scale still set to increase for ever.
And the NHS will not pay staff to spend time on digital platforms reading patient reports. Competing digital platforms already got the hospital and GP contracts for the outpatient interface. Notably, the NHS won't read any outpatient's "self-help" reports.
So in many ways, an ME/CFS/LC app cannot be the saving its made out to be, by ambitious trading partners speculating in our brave new NHS. And - pssst - up to 25% don't do apps anyway. Do I hiss or can I cackle?
Then there are complex evolving protocols & industry standards for data protection, recording, record-keeping, accuracy, amendment, transparency, and the digital replacement of human operators, eg offering companionship to isolated targets.
Not to mention access, diversity, equality and inclusion, all things notoriouly banned in some places. Eg "specialist" clinics distinctly excluded ALL severe cases for decades to date. So they think MEA's Project Manager can help renew their choosy contracts.
Even Colin Barton (MEASussex), the high-society ace, said severe cases are insupportable. I heard he even helped Professor Tyson with her trials and tribulations.
All I've seen of recent MEA designs says its way out of its digital depth, since mutating into one of the few remaining bureacracies with priviliged position, a captive market and all designed for its own convenience only, while mouthing off about superb customer services being currently improved due to some blips.
Was Dr Scott not part of a research team who published a paper recently.
I think from memory that there were issues discussed here , but with 2 hours sleep I could be wrong .
The trials platform proposal raised red flags for me due to the blurb on lead researcher - trained under mike beardsworth and peto.
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
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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.
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.