News from Scotland

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/

 

This is very muted but still a positive that should influence the NICE committee and Cochrane review.

 

"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

 

Governments have a sense of urgency about some things; however not ME!

I wonder what governments' definition of "Must not wait", actually is.

 

It is complicated by the fact that Action for ME is the go to organisation. Sharpe being based at Edinburgh and leaving at least one acolyte, Jon Stone of FND fame, in place may be a factor too.

 

Don't forget Prof Carson a psych also based in Edinburgh.

 

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/

 

Scottish Government Issue Caution for Graded Exercise Therapy in ME/CFS & Post/Long-Covid

Thread there.

 

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.

 

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 .

 

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.]

 

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.

 

Code:

https://twitter.com/actionforme/status/1366320024072433667

 

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

see https://meassociation.org.uk/2021/0...-actions-in-england-wales-and-scotland/#Wales

 

Dr. Nina Muirhead's educational modules went live on the NHS D & G system yesterday.

 

NHS Dumfries & Galloway? https://www.nhsdg.co.uk/

I couldn't find the educational modules you refer to. Do you have a link? A search of the site came back with zero results for "moorhead"

 

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.

 

‘Stigmatised and ignored’: Campaigners call on government for urgent help for patients with chronic illness

https://www.pressandjournal.co.uk/f...rgent-help-for-patients-with-chronic-illness/

 

The Long Covid timebomb: We could soon have 10,000 new cases a day

https://www.scotsman.com/health/cor...could-soon-have-10000-new-cases-a-day-3303616