News from Scotland

Highlands MSP calls for national guidelines on chronic fatigue syndrome

Highlands and Islands MSP Emma Roddick has called for national guidelines on Myalgic Encephalomyelitis (ME), also called chronic fatigue syndrome, to be established.

Currently in Scotland there is no national-level guidance for doctors of ME patients to refer to, leading to inconsistency in treatment across health boards and some patients suffering difficulties with diagnosis.

Ms Roddick said: “I have had regular communication with constituents of mine who have described the stress and difficulty caused by the lack of clear guidance for doctors. Folk want their doctors to understand what their condition means.

“They deserve for there to be clear guidelines so that doctors are armed with the information and confidence they need to prescribe treatment and support. This would also allow patients to refer easily to guidance that they can trust.

“I have previously written to every health board covering the Highlands and Islands supporting constituents on individual cases, clearly there is a need for full national guidance.
“Suggestions that doctors should simply follow the NICE guidelines simply do not work unless the underlying infrastructure is the same, we need guidance which works for our health services.”

She added: “I hope that the Scottish Government will accelerate work to make such national guidance a reality.”
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Highlands MSP calls for national guidelines on chronic fatigue syndrome (inverness-courier.co.uk)
 
A nice podcast from Nature Scot linked on the birds thread. Anna Wood was a very good spokesperson for ME/CFS. Not that ME/CFS was the focus of the podcast, quite the contrary, it's mostly about birds and nature photography.
Feathered Friends - birds and bird-watching

It just sort of normalised the illness. I wish BPS proponents would listen to that podcast - Anna Wood is a person making the best of a very difficult illness.


at 16 minutes said:
Creativity is something that, I think it's important for everyone, but I think particularly everyone that I know with a chronic illness of some sort finds creativity really important. It's a way to escape, I guess. It doesn't take away the symptoms. It doesn't make you feel less ill. It doesn't make you any better, but it does just give you some moments of joy and a break, I guess. A short break. Which is lovely.

I have to say that one of the key symptoms of ME is any sort of exertion, whether that is physical or cognitive, there is often a huge exacerbation of symptoms. There's often payback. And that's really hard. So it can be, on a beautiful sunny day when I just want to be outside all morning, that I suffer quite badly from having done that. So, it's not necessarily always a good thing. It's a wonderful thing for mental health and for having a break from the drudgery of being ill every single day. But it can also come with consequences so I have to be quite careful about how much I do and keep an eye on how I am feeling.
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at 24 minutes said:
I try not to make goals because it's so hard to predict what my body going to be able to do. And because it so out of my control, it can feel disappointing when I can't achieve something I want to achieve. So I'm quite happy most of the time to see what comes, see what I am able to do. Having said that.. (she goes on to mention lots of things she would love to do).
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Question reference: S6W-15392
  • Asked by: Mark Ruskell, MSP for Mid Scotland and Fife, Scottish Green Party
  • Date lodged: 27 February 2023
  • Current status: Answered by Humza Yousaf on 13 March 2023
Question
To ask the Scottish Government how much of the announced £170 million for multi-disciplinary teams in NHS Scotland will be dedicated towards supporting people living with myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS).

Answer
We are providing £170m to support the delivery of extended multidisciplinary teams (MDTs) making it easier for patients to see the right person, at the right time, in GP practices and the community.

Whilst the fund does not have direct provision to support living with myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), the reforms are focused on strengthening the whole general practice team for the benefit of all patients.

We have recruited 3,220 whole time equivalent (WTE) healthcare professionals, such as pharmacists, mental health workers and physiotherapists, into these MDTS. This is helping to refocus the role of the GP on patients with more complex conditions, in turn improving patient outcomes, community health and practice sustainability.
 
Kalliope said:
the suitability of Graded Exercise Therapy (GET) in treating ME/CFS
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only today came across this rapid response
Graded exercise therapy (GET) for people with chronic fatigue syndrome / myalgic encephalomyelitis (CFS/ME)
GET is characterised by establishment of a baseline of achievable exercise or physical activity, followed by a negotiated, incremental increase in the duration of time spent physically active followed by an increase in intensity. It usually involves exercise that raises your heart rate, such as swimming or walking.

Full findings and conclusions can be found in the report below:
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https://www.healthcareimprovementscotland.org/evidence/rapid_response/rapid_response_02-20.aspx

a section where they discuss the Cochrane review.
@Caroline Struthers
 
Post copied from LC in the media

Urgent action needed to tackle stigma around long Covid, report warns
An inquiry from the Covid-19 Recovery Committee outlined a raft of measures to raise awareness surrounding the condition

Ministers have been urged to establish a single point of contact for long Covid sufferers in every health board after a report called for an “urgent” end to the stigma surrounding the illness.

It comes after the Covid-19 Recovery Committee published its report on the illness, outlining a raft of measures for the Scottish Government to improve the condition and raise the awareness of it among healthcare professionals.

Hearing from from academics, clinicians and those living with long Covid, committee members noted “concern” as patients reported being unable to receive a correct diagnosis or proper treatment.

An estimated 172,000 people in Scotland have self-reported the condition, with an estimated 1.9m across the UK.

The four-month inquiry, launched in January, focused on awareness, recognition, therapy and rehabilitation.

It has led to a number of recommendations, including a single point of contact for long Covid in every health board and a public health campaign to raise awareness of the impact the condition can have on sufferers.

Jim Fairlie, committee convener, also said he was “deeply saddened” to learn of the stigma facing those with the debilitating condition.

He said: “The report sets out the urgent need for the Scottish Government to take action to address the stigma and lack of awareness surrounding long Covid and to improve the diagnosis and treatment for individuals living with this condition.

https://news.stv.tv/scotland/urgent...kle-stigma-around-long-covid-ministers-warned
 
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The report is long and detailed - 85 pages.
https://t.co/rhsrU3WcDd
It includes sections on
Awareness and recognition - including a section on stigma with quotes from pwLC and a note about similar stigma for pwME. Stigma was described from both clinicians and the general public. Also sections within this on medical education and access to benefits.
Therapy and rehabilitation
I haven't read this section
Study and Research
 
ME in Scotland: 'I've battled ME my entire adult life - the help is still not there'

A campaigner who has battled ME since she was 18 warns sufferers are falling through the cracks of the health service.

Karima Rahman experiences post-exertional fatigue, nausea and headaches and struggles to perform basic household chores as a result of the illness.

Myalgic encephalomyelitis, also called chronic fatigue syndrome or ME/CFS, is a long-term condition with a wide range of symptoms.

There are around 20,000 in Scotland living with persistent and fluctuating symptoms including post exertional malaise, pain and cognitive dysfunction.

The condition can affect anyone, including children, but is more common in women and tends to develop between the person’s mid-20s and mid-40s according to the NHS.

ME Action Scotland campaigner Karima, 31, works remotely three days a week and has lived with the condition for since 2010.

She told STV News: “I work three days a week and spend the rest of it recuperating. I can appear quite well but my body will flare with symptoms as a result of energy expenditure.

“Everyday household tasks such as washing up and hoovering really set me back.

“Within our community my ME is considered mild, which shows how low the bar for a quality of life is. I consider myself extremely lucky.

“Around 25% are lying in bed at home, they’ve basically been in lockdown for a decade. Exertion for them is sitting up or making it to the toilet.”

The Scottish Government promised to implement parts of new NICE practice guidelines for treating ME last year to help end “scepticism and disbelief” around the illness.

But patients say specialist services are still not available.

Ms Rahman added: “There’s no training, no support. It’s not high on their priority list.

“Healthcare professionals can and should play a role in supporting people. We need to see that continued professional development to get up to date with where we are now.

“There are some that really try but do not have that support or the structure in place.

“Even if the GP asked, there’s nowhere to send people.

“I found the patient community often offers more support than healthcare professionals.”
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full article
https://news.stv.tv/scotland/me-in-...ic-fatigue-condition-left-with-little-support
 
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Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Services in Scotland: Findings from an analysis of surveys issued to NHS Boards in Autumn 2022
Published 16 May 2023

This report analyses survey responses from ten NHS Health Boards in Scotland to understand delivery of ME/CFS services, implementation of the updated ME/CFS NICE guidelines, barriers and opportunities to implementing the guidelines, and options for future ME/CFS service development.

Introduction
Myalgic Encephalomyelitis (ME), also referred to as Chronic Fatigue Syndrome (CFS), is a long-term, chronic condition with a range of symptoms, the most common of which is extreme tiredness. Other symptoms may include pain, brain fog, and sensory overwhelm as well as sleep disturbances and post-exertional malaise after activity.
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disappointing start with the 'extreme tiredness' being the first symptom and linking to the NHS UK site.

PEM seems to be optional ('other symptoms may include').

https://www.gov.scot/publications/m...urveys-issued-nhs-boards-autumn-2022/pages/3/

I hope #MEAction Scotland are on this.
 
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