NHS Scotland website not yet updated Nov 2021

Sly Saint · Nov 1, 2021

This website is in need of updating. The first page isn't too bad but......

Chronic fatigue syndrome (CFS)
GET and CBT stuff is still there and then there is this

Living with chronic fatigue
Even in its mildest form, chronic fatigue can have a significant emotional and financial impact on your life.

Source: Action for M.E.

https://www.nhsinform.scot/illnesse...yndrome-cfs#treating-chronic-fatigue-syndrome

eta: last updated June 2021

InitialConditions · Nov 1, 2021

Scotland has it's own version of NICE (SIGN), so I don't think we should automatically expect this website to change due to the new guideline.

DokaGirl · Nov 1, 2021

This case aside, it does bring up the question of what are the plans for disseminating the new guidelines?

It seems there are often gaps in communicating updates. At any rate, patient advocates may be busy. I know it's an ongoing task in Canada.

I hope the policies and guidelines for Scotland change soon!

Sly Saint · Nov 2, 2021

"ME - CFS Chronic Fatigue Syndrome

Background

NICE guidance was last published in 2010 and is due to be updated in 2021. The Scottish Good Practice Reference Guide gives useful background information, but some of its guidance is now outdated.

Please also see the 2021 Scottish update on Graded Exercise Therapy (GET) "

https://apps.nhslothian.scot/refhelp/InfectiousDiseases/ME-CFS

Scottish Good Practice Statement on ME-CFS
The Scottish Good Practice Statement on Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME-CFS) was published in November 2010. Scottish Ministers have given a commitment to review the content of this Statement when the National Institute for Health and Care Excellence (NICE) publishes its revised guideline on this condition in 2021.

NICE published its draft guidelines on ME-CFS on the 10 November 2020 https://www.nice.org.uk/guidance/GID-NG10091/documents/draft-guideline. Please note there are two major differences relating to treatments for ME/CFS:

Do not offer people any therapy based on physical activity or exercise as a treatment or cure for ME/CFS including any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy.

Cognitive Behavioural Therapy is not a treatment or cure for the condition and should not be offered in this context. It may be useful though in supporting people who live with ME/CFS to manage their symptoms and to improve wellbeing and quality of life.

Please also note that in August 2020 the Scottish Health Technologies Group (SHTG) published a rapid review into the use of GET as a treatment for people with ME-CFS. This concluded that:

In light of a Cochrane systematic review and the NICE guideline revision, caution should be noted on the use of GET for ME/CFS until the updates are published, and

No published evidence on the use of GET for people experiencing persisting fatigue following Covid-19 was identified. NICE has made a statement cautioning against assumption that ME/CFS recommendations apply to people with fatigue following Covid-19.

Click to expand...

https://www.scot.nhs.uk/scottish-good-practice-statement-on-me-cfs/

Sly Saint · Apr 9, 2022

The website has now been updated and reflects the new NICE guidelines:

Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS)
Myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) is a long term (chronic) neurological condition that affects the nervous and immune systems.

People with ME/CFS experience severe pain and fatigue associated with post-exertional malaise (PEM). This is when the body is not able to recover after using even small amounts of energy. This fatigue feels very different from ordinary tiredness. It might take a day or 2 to kick in after physical, mental, or emotional exertion.

ME/CFS affects more women than men, can affect children and adults of all ages and from all social and ethnic groups. It doesn't go away with sleep or rest and affects everyday life. It can sometimes be diagnosed as post viral fatigue syndrome (PVFS).

Symptoms of ME/CFS
The symptoms of the condition vary from person to person. There may be times when your symptoms improve and you'll be able to do some normal everyday activities. At other times, symptoms may get worse, affecting your daily life.

If you experience new symptoms, talk to your GP or specialist as the new symptoms may be unrelated to ME/CFS. Women often find that symptoms worsen at different times in their menstrual cycle. Not everyone will experience all of the symptoms.

Post-exertional malaise
People with ME/CFS experience severe pain, fatigue and a range of other symptoms associated with PEM. This is the body and brain’s inability to recover after using even small amounts of energy.

Simple physical or mental activities, or combinations of activities, can leave people with ME/CFS feeling completely exhausted. It can also lead to an increase in other symptoms.

Other symptoms of ME/CFS include:

feeling generally unwell

pain

broken sleep

problems with concentration, thinking and memory (‘brain fog’)

speech and language problems, including word-finding difficulties

poor temperature control

dizziness

being very sensitive to light and sound

nausea

loss of appetite

Click to expand...

https://www.nhsinform.scot/illnesse...myelitis-me-and-chronic-fatigue-syndrome-cfs/

Hutan · Apr 9, 2022

Good to see the update, it's pretty good. It says the information is sourced from AfME.

Women often find that symptoms worsen at different times in their menstrual cycle.
Click to expand...

Most people with ME/CFS improve over time, although some people don't make a full recovery.
Click to expand...

I'm not sure that there is any credible evidence to support those statements. I think there might be a link between the menstrual cycle and migraines, but is there any evidence that PEM is more likely at a particular time during the menstrual cycle? If there was, that might be a clue as to what is going on.

Sly Saint · Apr 9, 2022

Most people with ME/CFS improve over time, although some people don't make a full recovery.
Click to expand...

I think that statement is back to front ie should be 'Some pwME improve over time, although most dont make a full recovery'

DigitalDrifter · Dec 5, 2022

https://www.nhsinform.scot/illnesse...omyelitis-me-and-chronic-fatigue-syndrome-cfs

Causes of ME/CFS

stressful major life events

Click to expand...

Not happy with this as it implies ME is a psychological illness. The page still lists CBT as a treatment.

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NHS Scotland website not yet updated Nov 2021

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