#MEAction Scotland News

Copied from the NICE guideline thread here

Not much time me for this survey - Friday 11th for Scottish NICE guideline implementation consultation - survey link in tweet thread



 
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From #MEAction Scotland:

MEAction Scotland publishes 2024 Impact Statement
#MEAction Scotland said:
Following another busy and productive year, #MEAction Scotland is publishing our 2024 Impact Statement today, which covers the 2024 calendar year. It reports on our work to campaign for effective support, create stronger advocates and raise awareness.

The statement brings together some key successes over the year. Some highlights include:
  • £4.5m was included in the 2025/26 Scottish Budget to deliver services for people with ME, Long Covid, and other similar conditions – the first time ME has been included in the budget.
  • We engaged with 63 MSPs across all parties at our information stall in the Scottish Parliament.
  • We spoke as part of the Royal College of Physicians Edinburgh’s webinar on ME and Long Covid, which was inspired by our action in 2023. Almost 350 clinicians have accessed it so far and it’s still available for members to catch up on.
  • NHS Education for Scotland published a Practice Based Small Group Learning module on ME, which we have campaigned for and been in discussions about for many years. So far, 83 groups of GPs, General Practice Nurses and Pharmacists/Technicians have studied it.
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I'd love to hear more about the "Practice Based Small Group Learning module on ME" referred to there.
 
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I can't tell if the CPD course is good or not from just the first page. It's not clear if it has anything to do with #MEAction Scotland.

NICE guidelines on ME/CFS have been published in 2007 and 2021.1 Both guidelines emphasise the importance of early diagnosis, and of avoiding delay in initiating effective symptom management and appropriate therapies. It is often a diagnosis made by the exclusion of other illnesses, resulting in long delays for patients. NICE recommends that the condition should be suspected in patients who have the following symptoms for a minimum of six weeks for adults and four weeks in children and young people. Diagnosis can be confirmed after three months of persistent symptoms:
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Yes, there does seem to be an emphasis on getting people diagnosed quickly as if that magically does something, when actually just telling a patient that ME/CFS is suspected and telling them about PEM and energy management while a good diagnostic process is followed is the ideal.

I'm not sure why the 2007 NICE Guideline is mentioned, but perhaps it becomes clear in later pages. I don't think if something like multiple sclerosis had a relatively new guideline and a superseded guideline that is now nearly 20 years old that the old guideline would rate a mention.

The Scottish Government Good Practice Statement on ME/CFS in 20102 reported an estimated population prevalence of 0.2-0.4%, affecting any age and ethnic group, but more common in women and people aged 35-55 years.
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I don't think it makes sense to talk about an upper limit on prevalence. If we believe that few people recover after a few years of ME/CFS and if we don't think people with ME/CFS die dramatically younger than the average person - and I think we believe both of those things - then the real rates of ME/CFS will increase with age. It's probably just that ME/CFS doesn't get diagnosed in old people very often, and earlier diagnoses perhaps get forgotten.

NHS Scotland has a Chronic Pain CPD Module too that includes:
These are often complex patients and regularly lead to unsatisfying consultations for both clinicians and patients. Having a structured assessment, and engagement of the patient in a therapeutic alliance based on their own goals, helps build effective pain management plans. Expert guidance emphasises the importance of non-pharmacological measures
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That first sentence really illustrates an attitude problem on the part of the NHS. They could have written 'We often don't have much to offer these patients that makes a significant improvement.'. Instead, it's about how the difficult patients mean clinicians don't have a nice time at work.
 
From #MEAction Scotland:

Millions Missing Scotland 2025: Red alert for ME
#MEAction Scotland said:
#MEAction Scotland volunteers will be outside the Scottish Parliament in Edinburgh on Wednesday 14th May, from 12–2pm, calling on the Scottish Government to urgently act on its promises.

Around the world, millions are missing – from school, work, communities, and everyday life – due to ME. They are dismissed and disbelieved, left without support. In Scotland, we’ve had over 20 years of reports and recommendations which haven’t translated into improvements for people with ME. We need urgent, meaningful action.

The theme this year is red alert for ME. You can join us in asking MSPs to come out and support our urgent call for real action over warm words. In the 2025-26 Scottish Budget, the government committed £4.5 million to deliver specialist support for people with ME, Long Covid, and other similar conditions. The government is in the early stages of planning how the funding will be spent and consulting with health boards but, with less than a year to use the funding, it needs to move fast.
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See the full post for actions you can do to support this effort. Includes a template for email to send to MSPs.
 
From #MEAction Scotland:

Millions Missing Scotland 2025 raises a red alert
#MEAction Scotland said:
On Wednesday 14th May 2025, #MEAction Scotland held Millions Missing Scotland outside the Scottish Parliament in Edinburgh. The rally sent a clear and urgent message to the Scottish Government to act on the £4.5 million pledged in the 2025-26 budget for specialist support for ME, Long Covid, and other similar conditions.

This year’s theme, ‘Red alert for ME’, highlighted the dire situation for people with ME in Scotland and the need for the government’s recent warm words to turn into action. #MEAction Scotland volunteers were joined by people with ME, their carers, families and friends, and the event was live-streamed on Facebook for people at home to join virtually. Thanks to an effective email campaign from the ME community, 19 MSPs from across political parties came outside to show their support.
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