News from Scotland

Sly Saint · Jul 6, 2022

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome NICE guideline: stakeholder review
Published 5 July 2022
Directorate
Healthcare Quality and Improvement Directorate
Part of
Health and social care
ISBN
9781804354872

An independently-produced stakeholder review of the NICE guideline on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). It makes recommendations regarding the implementation of the guideline in Scotland, and identifying and addressing priorities for service improvement in ME/CFS care.

This publication is currently being converted into accessible web content. In the meantime, please check back regularly or download the supporting PDF.

Maree Todd MSP, Minister for Public Health, Women’s Health and Sport:

“I welcome the report of this Scottish stakeholder review of the NICE guideline on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), which was commissioned by Scottish Government and carried out by an independent provider. The publication is an important step towards recognising the views and voices of people affected by ME/CFS and those who care for and support them. I’m grateful to all those who contributed their time and energy to this review.

“One of the main findings of this report is that there is a visible commitment to supporting the key changes within the NICE guideline, to help end the scepticism and disbelief. It is noted in the NICE guideline that “people with ME/CFS may have experienced prejudice and disbelief and could feel stigmatised by people (including family, friends, health and social care professionals, and teachers) who do not understand their illness.

“I want this stigma and disbelief to end. The Scottish Government is fully supportive of the NICE guideline, and the accompanying implementation statement. We have also written to health boards and those providing medical education to highlight the key changes within the NICE guideline. We will continue to work to raise awareness on the condition and ensure the Scottish guidance is updated to reflect these changes.”
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report at link
https://www.gov.scot/publications/r...itis-chronic-fatigue-syndrome-nice-guideline/

adambeyoncelowe · Jul 6, 2022

The report is quite useful. They point out that the refusal of clinicians to accept the new NICE GLs emphasises their scepticism towards pwME. In other words, those who refuse to use the new GLs are continuing their gaslighting of us.

They also point out that the clinicians who complain about GET being removed seem to conflate GET with any intervention based on activity (including pacing). Which goes to show how ill informed they are.

There's some low-key shade being thrown in there.

Sean · Jul 7, 2022

adambeyoncelowe said: ↑

Which goes to show how ill informed they are.
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And want to remain.

MSEsperanza · Jul 10, 2022

ABrokenBattery on Twitter quoting Maree Todd MSP, Minister for Public Health, Women’s Health and Sport:

"I want this stigma and disbelief to end. The Scottish Government is fully supportive of the NICE guideline, and the accompanying implementation statement." Independently produced stakeholder review of the NICE guideline."

Report available as a PDF https://t.co/frUGNyzXe3 / Twitter

https://twitter.com/user/status/1544618838708346881

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"A few of the clinicians involved didn't seem to understand PEM or how the evidence was reviewed. Good to hear the guideline was supported despite there ignorance. Another positive step." https://t.co/2jnuQNxGZq / Twitter

https://twitter.com/user/status/1544623553726894080

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The Scottish Government (2022), Report on a Scottish stakeholder review of the Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome NICE guideline, https://www.gov.scot/publications/r...itis-chronic-fatigue-syndrome-nice-guideline/

Thank you to MEAction Scotland and everyone involved.

Barry · Jul 14, 2022

adambeyoncelowe said: ↑

They point out that the refusal of clinicians to accept the new NICE GLs emphasises their scepticism towards pwME. In other words, those who refuse to use the new GLs are continuing their gaslighting of us.
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In other words, they are (still) part of the problem, not the solution.

Amw66 · Jul 14, 2022

Barry said: ↑

In other words, they are (still) part of the problem, not the solution.
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You can't implement the guidelines without prior staff education
To do otherwise is to risk perpetuating harm

Hutan · Jul 15, 2022

ME Genetics Research Symposium, Edinburgh, 14th September 2022

Andy · Jul 30, 2022

An Update On The Scottish Implementation Of The NICE Guideline

rvallee · Aug 19, 2022

I don't think this has been posted. The Chief Scientist Office of the Scottish Government is funding another GET trial that isn't GET.

CISCO-21 Prevent and Treat Long COVID-19. (CISCO-21)
https://clinicaltrials.gov/ct2/show/NCT04900961

A personalised, resistance-based exercise intervention for patients during the convalescence phase in-hospital through to 3-months post-discharge, a duration reflecting chronic, maintenance treatment studies. To maximise enrolment of eligible patients, the intervention may be initiated in-hospital or in the community post-discharge. Resistance bands may be used according to the exercise guideline.

And I think this is another arm:

The exercise regimens are generic and designed not to require expert physiotherapy input, therefore, the availability of NHS physiotherapists, which may be at times limited, will not be a barrier to implementation

What count are we at? Has it reached 1,000 trials? I'm pretty sure it must have. They're all identical other than superficial differences. Complete systemic dysfunction.

Kirsten · Aug 30, 2022

Scotland's new version of PIP, Adult Disability Benefit, just began. I hope it's as good as it sounds.
https://www.bbc.co.uk/news/uk-scotland-62712288

Sly Saint · Sep 24, 2022

£6m needed to tackle ME crisis as patients demand action over long covid fears

Thousands of ME patients are demanding action to ring-fence £6million a year to treat them.

A charity supporting people with the condition is planning a protest outside the Scottish Parliament amid claims they are “stigmatised and neglected by medical and social services who turn a deaf ear to their plight”.

MEAction Scotland is calling for the sum to be spent every year on specialist medical care and treatment.
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features @Emsho and her mum
https://www.dailyrecord.co.uk/news/scottish-news/6m-needed-tackle-crisis-patients-28069473

Sly Saint · Sep 29, 2022

Belle and Sebastian singer: Living with ME makes me feel like a ‘non-person’

Stuart Murdoch, the lead singer of Belle and Sebastian, has said living with ME (Myalgic encephalomyelitis) left him feeling “invisible” and like a “non-person”.

He took part in a protest outside the Scottish Parliament on Wednesday, calling for more funding for specialist treatment to tackle the illness, which is also known as chronic fatigue syndrome (CFS).

As dozens gathered at Holyrood, Mr Murdoch said little had changed in the last few years despite promises from politicians.

A number of MSPs came outside to meet the demonstrators and speak to the crowd.

The campaign group ME Action, which organised the “millions missing” protest, says there are about 21,000 people in Scotland with ME.

Mr Murdoch told the PA news agency: “We’re looking for a cure and a treatment.

“It strikes me – why should this be a protest? What makes it different to other illnesses?

“The fact is people with ME, for some mysterious reason are not believed.”
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https://www.stroudnewsandjournal.co...ian-singer-living-makes-feel-like-non-person/

Sly Saint · Jan 3, 2023

SNP ministers accused of turning their backs on Scots suffering from ME

SNP ministers have been accused of turning their backs on thousands of Scots suffering from myalgic encephalomyelitis (ME).

Scottish Labour said the condition is twice as prevalent as multiple sclerosis and can prevent people from working and living independently.

However, just one health board in Scotland – NHS Fife – has any dedicated ME services. This means that across Scotland, just £67,405 is currently being spent on dedicated provision, Labour said.

The party’s health spokeswoman Jackie Baillie said: “The facts are plain for all to see – despite thousands of Scots living with ME there is next to no dedicated services to help treat patients. This SNP Government has turned its back on Scots with ME.

“This is an incredibly serious condition with a knock-on effect on our economy, workforce and NHS. Just like long Covid patients, ME patients are being abandoned by an SNP Government that doesn’t want to know. This must end and end now.”

SNP public health minister Maree Todd said: “This suggestion is not true – we are very well aware of the challenges faced by ME patients and are determined to ensure they have as much help and support as possible.
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https://www.scotsman.com/news/polit...heir-backs-on-scots-suffering-from-me-3971633

kilfinnan · Feb 2, 2023

ME debate in Parliament today. Lack of progress. Sad.

https://www.scottishparliament.tv/m...fkquAkH0FQWDhsIVBI99aTT0X_vFVuLtfuD9UpXIf8Zuc

Adam pwme · Feb 2, 2023

https://twitter.com/user/status/1621208471977828353

https://twitter.com/user/status/1621208740295761928

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Sean · Feb 3, 2023

Trish · Feb 3, 2023

I watched part of the debate. Well done to MEAction Scotland for their work on getting this to happen. It sounds like there is some progress towards getting better services, but there's a long way to go.

John Mac · Feb 3, 2023

SNP statement from yesterday's debate

https://www.theyworkforyou.com/sp/?id=2023-02-02.20.20

NelliePledge · Feb 3, 2023

John Mac said: ↑

SNP statement from yesterday's debate

https://www.theyworkforyou.com/sp/?id=2023-02-02.20.20
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Presume this is the statement on behalf of the Scottish Government in closing the debate rather than an SNP policy statement.

Sly Saint · Feb 5, 2023

Merged thread

Debate on ME Services : Scottish Parliament 2 Feb 2023

motion S6M-06112, in the name of Sue Webber, on a Scottish Government-commissioned review of ME services and future action. The debate will be concluded without any question being put, and I invite those members who wish to speak in the debate to press their request-to-speak buttons.

Motion moved,

That the Parliament notes that the Scottish Government commissioned and welcomed an independently-produced stakeholder review of the NICE guideline on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), published on 5 July 2022; further notes that the review states that myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) is a complex chronic medical condition affecting an estimated 250,000 people in the UK and that around 20,000 people in Scotland are living with the condition, including in the Lothian region; highlights the four key symptoms characteristic of the condition, which are debilitating fatigue that is worsened by activity, post-exertional malaise (PEM)/symptom exacerbation, unrefreshing sleep and/or sleep disturbance, and cognitive dysfunction, and which affect multiple physiological systems and can fluctuate from mild to very severe in individuals and across the population affected; understands that the review recommends consideration be given to identifying the most effective approaches to improving GP knowledge, confidence and understanding of ME/CFS through an appropriate education programme, and further understands that the review recommends that pilot services should be funded in a selection of NHS boards to test the development of specialist services with patient involvement and third sector collaboration embedded in the design.
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ME Services: 2 Feb 2023: Scottish Parliament debates - TheyWorkForYou

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