News from Scotland

Kalliope

Kalliope

Senior Member (Voting Rights)
The Scottish Health Department has posted an interim statement advising caution over the suitability of Graded Exercise Therapy (GET) in treating ME/CFS and has reiterated the earlier statement from NICE cautioning against use of GET in Post/Long-Covid.

Following a review of the evidence behind existing recommendations of GET as a suitable therapeutic treatment for ME/CFS, Health Improvement Scotland’s Health Technologies Group produced a rapid response in August reporting the conflicting reports of effectiveness for GET.

This has now been released in tandem with an update to the webpage for the Scottish Good Practice Statement on ME/CFS.

https://meassociation.org.uk/2020/1...d-exercise-therapy-in-me-cfs-post-long-covid/
 
#MEAction Scotland has published an article on February 5th 2021 headed:

Latest report shows people with ME have been failed by Scottish Government
https://www.meaction.net/2021/02/05...vernment/?mc_cid=21f9fe9763&mc_eid=83ddbd3a71

The Scottish Government has said it must not wait to address the needs of the ME community, but its latest report indicates that this is precisely what it has done and continues to do. The ME community has also waited: for nearly twenty years, people with ME in Scotland have waited for the government to act on the recommendations of successive reports

[...]

“…. it is recommended that Scottish Government should gather together, and give consideration to, the original HNA recommendations, the findings of the Health and Social Care Alliance Scotland gathering views exercise, the NICE guideline review, and the findings of the rehabilitation framework in order to define next steps in developing and improving services and support for adults and children with ME-CFS in Scotland.”

#MEAction Scotland endorses this recommendation and will work tirelessly with the Scottish Government and other ME organisations and charities to progress the recommendations reviewed in the briefing. We will continue to shine a light on the effect decades of disinterest has had on further generations of people with ME.
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"The Scottish Government has said it must not wait to address the needs of the ME community, but its latest report indicates that this is precisely what it has done and continues to do."

Heh, sounds like the Scottish government is exactly like every other government when it comes to ME :geek:
 
New support for professionals on M.E./CFS and managing Long Covid symptoms
GPs and health professionals in Scotland can now get a free one-hour training session on the diagnosis and management of M.E./CFS. This module, based on ten case studies, also supports the management of Long Covid symptoms.

Action for M.E. is very excited to launch a new partnership project in Scotland: Learn about M.E. – the M.E./CFS Professional Development Project in Scotland.
This project is a partnership between Action for M.E., The M.E. Association, #MEAction Scotland, The 25% Group and Dr. Nina Muirhead. Dr Muirhead, who developed a free online Continuing Professional Development (CPD) module in partnership with the UK CFS/M.E. Research Collaborative (CMRC,) became ill with M.E./CFS in 2016.
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full article here:
https://nen.press/2021/02/08/new-su...-on-m-e-cfs-and-managing-long-covid-symptoms/
 
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23rd February 2021.
Willie Coffey Scottish National Party
Can patients with myalgic encephalomyelitis, which is otherwise known as ME or chronic fatigue syndrome, be included with those at the highest clinical risk on our shielding list?

The First Minister:

I will double-check that, because I do not want to give wrong information in response to Willie Coffey’s question. I assume that patients with ME are in the group 6 category, which is the group that is starting to be vaccinated now, but I will double-check that and get back to Willie Coffey if that is not correct.
 
alktipping said:
i have had multiple invitations to be vaccinated but am to unwell to travel to the nearest centre . so in liverpool at least we seem to be in the at severe risk group .
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In England it seems to vary from GP to GP as to whether people with ME/CFS are classified in Group 6 or not. Group 6 includes those with long term health issues many of which are specifically named. Group 6 is prioritised after people aged over 70 and before those age over 65? The guidelines do not specifically name ME/CFS, but do say people with long term Neurological conditions should be considered for inclusion on the basis of a clinical judgement as to their risk. Representation from the ME Association has failed to persuade the English Chief Medical Officer to include ME/CFS as a specifically named condition, with him responding that GPs need to decide on individual cases. (See https://meassociation.org.uk/2021/02/latest-covid-19-me-cfs-and-the-jcvi-priority-vaccination-list/ )

The ME Association has provided a draft letter for people to use asking their GPs to include them in group 6. Judging by comments on the ME social media pages this seems to work for a lot of people that use it, certainly sending a copy to my GP got me bumped up from Group 8 to Group 6, though it probably just means I am getting my first injection two or three weeks sooner than I would have just on the basis of my age. (Because the UK is leaving a gap of 12 weeks or more between the two vaccination injections, I thought it was worth getting bumped up because various other groups are now also being given higher priority and we don’t have any certainty as to what vaccine supplies will be like in three months time.) If you know anyone in the UK with ME/CFS that has not yet been invited for their vaccination, it is worth suggesting they contact their GP and pointing them to the ME Association web page, as Group 6 are being given their first injection now. [Added - this is particularly important for younger people as it could be six months or more before they get vaccinated on the basis of age alone. ]

From the ME Association social media comments and local group pages not all GPs are agreeing to include us in Group 6, though the reasons they give for not doing so are often based on a misunderstanding of the guidelines or the process rather than any clinical grounds. A small minority of those refusing to include ME/CFS in Group 6 do with the assertion that it is a psychological condition so at no higher risk than the general population.

In Wales and also I think Northern Ireland the guidelines have been altered so that people with ME will automatically be included in Group 6, which also in effect was the question above put to the Scottish First Minister. [Added - However, given potential problems with recording of ME/CFS in medical records in the UK, even in Wales, Northern Ireland and Scotland it is probably worth checking what priority group you have been assigned to.]

Do we know anything about ME/CFS priority in vaccination roll outs in other countries?

[corrected typos and a couple of indicated additions.]

[added - the statement about Wales automatically including ME in group 6 is inaccurate, it is only one Welsh Health Board, see my more recent comment below.]
 
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alktipping said:
i have had multiple invitations to be vaccinated but am to unwell to travel to the nearest centre . so in liverpool at least we seem to be in the at severe risk group .
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Here in rural Derbyshire and in North Staffordshire provision has been made through local GP practices for people unable to attend the centres to be vaccinated at home. This is being organised at a very local level by GPs not the large NHS directly run regional centres. So @alktipping it might be worth contacting your GP practice to discuss a home visit.
 
Sly Saint said:
New support for professionals on M.E./CFS and managing Long Covid symptoms

full article here:
https://nen.press/2021/02/08/new-su...-on-m-e-cfs-and-managing-long-covid-symptoms/
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The podcast on 'Learn about M.E.' - a CPD module funded by the Scottish Gov, is now available to listen to online for free. The podcast is host by our Operations Director, Ruth, and features Nina Muirhead, GP Clare Taylor, and Anna + Craig, who have #mecfs.
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As linked to helpfully by Anna, you can find the podcast at the link below. buzzsprout.com/1717775/8027624
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Code: 
https://twitter.com/actionforme/status/1366320024072433667
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Peter Trewhitt said:
In Wales and also I think Northern Ireland the guidelines have been altered so that people with ME will automatically be included in Group 6, which also in effect was the question above put to the Scottish First Minister. [Added - However, given potential problems with recording of ME/CFS in medical records in the UK, even in Wales, Northern Ireland and Scotland it is probably worth checking what priority group you have been assigned to.]
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Apologies, I had misread information from the MEA and it was only one Welsh Health Board so far that supports automatic inclusion of ME in the at risk Group 6

Information we have received from Dr David Hefin, Member of the Welsh National Assembly for Caerphilly, makes it clear that the Aneurin Bevan University Health Board accepts that people with ME/CFS should be included in group 6 of the JCVI priority list (see below).

The board employs 14,000 staff in Blaenau Gwent, Caerphilly, Monmouthshire, Newport, Torfaen and South Powys.

I am writing to the other six Welsh Health Boards today to ask them to confirm that they are applying the same policy.
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see https://meassociation.org.uk/2021/0...-actions-in-england-wales-and-scotland/#Wales
 
No I don't. It appeared on their internal notices yesterday. Sent to all D & G healthcare professionals.

As a matter of interest. GP's get these notices.

They will scroll through. Would they open and go through modules like these as a matter of course. Or would they pick and mix by personal interest? NICE notices appear here but they'd be a bit different.
 
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‘Stigmatised and ignored’: Campaigners call on government for urgent help for patients with chronic illness

More than 20,000 people in Scotland are living with myalgic encephalomyelitis (ME) which is often diagnosed following an infection, such as glandular fever.

The lives of people who’ve previously been healthy and active can often be left devastated following a diagnosis.

Yet little is known about the cause of ME, which is also known as chronic fatigue syndrome (CFS), or the best treatment for the condition.

Time for change
The campaign group #MEAction Scotland has now written to the Scottish Government calling for “urgent action” to be taken.

One of its volunteers, Helen McDade, said: “#MEAction Scotland is seeking urgent action from the Health Secretary, Humza Yousaf.

“People with ME are still routinely stigmatised and ignored by the medical and social care services.
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https://www.pressandjournal.co.uk/f...rgent-help-for-patients-with-chronic-illness/
 
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