Scottish ME/CFS clinical service provision

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Amw66

Senior Member (Voting Rights)
I'm starting a thread , kicking off from my post in News from Scotland.

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Post in thread 'News from Scotland'

When there's the chance to start from scratch this is what we seemingly need .
MEA seems to be the go to


The H4ME team met with a Scottish Health Board to discuss a new, patient-centred service for ME/CFS/LC funded by the Scottish Government.
This symptom-focused service will be delivered by a multidisciplinary team, primarily through remote assessments in the Highlands. Patient feedback emphasised the need for validation, education on post-exertional malaise, and holistic support.
We're hopeful that all previous H4ME recommendations can be applied to this new...
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Given there is virtually no service provision here this is a huge opportunity -it's my understanding that NHS Highland with Janet Scott are also looking to investigate treatment options; clinical services establishes a cohort .If done well could be a gamechanger.

Given timing though, it may also be the testing ground for the MEA app and BACME current model. It may also feed into implementation of the Delivery Plan so it's worth keeping an eye on and following how this is procured and how it beds in.

If anyone finds info relative to this, please post to this thread.

Tagging @dave30th, @Jonathan Edwards as it may be of interest.
 
Jonathan Edwards said:
This looks very much like a rollout of the usual BACME stuff - multidisciplinary, holistic, patient centred - all the wrong buzzwords. And no substance. What treatment options?
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It sounds like an opportunity to grab a share of the funding for...well, something, we can work out the details later.

If they promised access to basic healthcare and twice yearly review I'd be genuinely excited.
 
Jonathan Edwards said:
I don't know Janet Scott. Are there any trials to do? Do they need a 'platform'?
Have we got threads on this.
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No. Not yet. This is partly why I started this thread as there seems to be various initiatives that could coalesce , and it may not be positive , though folks don't seem to want to be aware of pitfalls. I'm probably one of those categorised as " overly negative" .

It's not really been announced as far as I'm aware . There was a funding application and it seems to have been successful . Perhaps Sonya can fill you in as AfME were supporting it. I raised issues and didn't hear any further when they were looking for PPI input, so was probably backfilled.

Janet Scott heads up the NHS Scotland Long COVID team , she was appointed / stepped in when it was a political disaster area . The remit now includes ME/ CFS .
She has an infectious disease background . Her training mentors are questionable . She may of course not be anything like them. ( Hopefully) .
 
Amw66 said:
No. Not yet. This is partly why I started this thread as there seems to be various initiatives that could coalesce , and it may not be positive , though folks don't seem to want to be aware of pitfalls. I'm probably one of those categorised as " overly negative" .

It's not really been announced as far as I'm aware . There was a funding application and it seems to have been successful . Perhaps Sonya can fill you in as AfME were supporting it. I raised issues and didn't hear any further when they were looking for PPI input, so was probably backfilled.

Janet Scott heads up the NHS Scotland Long COVID team , she was appointed / stepped in when it was a political disaster area . The remit now includes ME/ CFS .
She has an infectious disease background . Her training mentors are questionable . She may of course not be anything like them. ( Hopefully) .
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Note from AfME - they did not support the grant application as they could not resource it.
 
Amw66 said:
Janet Scott heads up the NHS Scotland Long COVID team , she was appointed / stepped in when it was a political disaster area . The remit now includes ME/ CFS .
She has an infectious disease background . Her training mentors are questionable . She may of course not be anything like them. ( Hopefully) .
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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 —

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Great to hear Prof Jon Stone, FND specialist from @EdinburghUni, speak today at NHS Highland FND Study Day.

Functional Neurological Disorder is a condition where the nervous system doesn’t function properly despite no structural damage. Key quotes: “Because there is no damage to the nervous system, you have the potential to get better.”

“It’s at a level of the brain you are not in control of” - understanding this is essential for recovery.

Prof Stone covered modern diagnosis using positive signs, the neuroscience of FND, and why multidisciplinary treatment is showing promise.

Learn more about FND: www. neurosymptoms.org
#Neurology #FND #MedicalEducation #NHSHighland
@NHSNSS @longCOVIDScot @NHSHighland
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Daily stress and worry are additional triggers of symptom fluctuations in individuals living with Long COVID. Key Findings on Stress and Symptom Severity: The study highlights the relationship between daily stress, worry, and symptom severity in Long COVID patients.

• Stress and worry about illness are strong predictors of increased symptom severity on the same and following day.
• Symptoms affected include breathlessness, dizziness, depression, and cognitive dysfunction.

• Findings are consistent across gender and mental health history, suggesting the need for stress management in self-care programs.

Read the full paper here on Annals of Behavioral Medicine: eprints.whiterose.ac.uk/id/eprint/23...
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Amw66 said:
Note from AfME - they did not support the grant application as they could not resource it.
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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
 
SNT Gatchaman said:
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 —
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I am not joking that we would be better served by philosophy graduates.

Absolutely not kidding, not even a little bit.
 
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