New BACME guidelines for severely affected out... somewhere?

[Esther12]

Just saw this from Colin Barton's group: https://measussex.org.uk/severely-affected-guidelines-february/

Severely affected guidelines – February
By admin On 21st February 2017
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Sussex Argus (21/2). A charity which supports people with ME has welcomed new guidelines aimed at improving care for those most severely affected by the condition.

The Sussex ME Society says the document, drawn up by the British Association for Chronic Fatigue Syndrome/ME (BACME), is designed to help professionals dealing with those who are house or bedbound feel better able to understand ME. It also helps them find ways to manage the complex illness to improve the patient’s quality of life.

ME is characterised by disabling persistent physical and mental fatigue, pain, cognitive dysfunction and other symptoms. At its most severe it can lead to individuals becoming housebound, bedbound or in a wheelchair. This leaves them dependent on family and carers for many or all basic activities of daily living for many years. However others have been known to return to health within a much shorter time.

Colin Barton from the Sussex ME Society said: “Sometimes those most in need are the most neglected and we hope that these guidelines will go some way to resolving that very unfair situation.”

The guidelines are available from Sussex & Kent ME/CFS Society.

Anyone else know anything about this? Couldn't find the guidelines on-line anywhere. Knowing BACME, I would expect them to be appalling.

 

[Sasha]

I see BACME's website is up again:

https://www.bacme.info/

They've got some guidance here:

https://www.bacme.info/#guidance

But nothing leaps out that looks like guidance for the treatment of severely ill patients.

 

[Esther12]

I see BACME's website is up again:

Thanks - I'd failed to find that.

 

[Esther12]

Wow - even Action for ME are not rubbish enough to be recommended by BACME.

Patient Support Groups
The Association of Young People with ME (AYME) is a UK charity that provides support for children and young people aged up to 26 who have M.E./CFS.

• Association of Young People with ME - www.ayme.org.uk

The Sussex & Kent ME/CFS Society is a major regional charity which aims to inform, support and represent people affected by CFS/ME in the South East of England.

• Sussex & Kent ME/CFS Society - www.measussex.org.uk

reMEmber was formed in 1999 to secure good medical services for people who have CFS/ME.

• reMEmber - www.remembercfs.org.uk/cfs.htm

I don't know much about reMEmber, but saw they recommended the BACME guidance.

 

[user9876]

I see BACME's website is up again:

https://www.bacme.info/

They've got some guidance here:

https://www.bacme.info/#guidance

But nothing leaps out that looks like guidance for the treatment of severely ill patients.

They have their symptom management guide
https://www.bacme.info/sites/bacme..../BACME Therapy & Symptom Management Guide.pdf
But that has been out for a long time. I'm sure someone had sent them a whole set of mistakes and inaccuracies in their document. One was there description around Rituximab which they haven't corrected. It is worrying that a group aiming to give advice to professionals have not corrected inaccuracies in their advice.

 

[Cinders66]

It's a severe ME guideline which seems to be being kept part secret, i.e. Not for public consumption but available on request. Stonebird and 25% group have written in condemnation of it but not made public the literature itself so I assume its copyrighted and not available for passing around and download

Frankly these BACME are the last people I'd like to see giving advice on the severely ill

 

[Orla]

There is a link to the guide here (under 25% Group and Stonebird
How not to care for someone with Severe ME) http://www.25megroup.org/infomedical_other_related_medical_papers.html

 

[slysaint]

This is the direct link to the guidance for severe patients:
https://www.leedsandyorkpft.nhs.uk/...ation-for-cfs-me-shared-clinical-practice.pdf

"Working Group on Severe CFS/ME
Shared Clinical Practice Document
Version 1 January 2017"

 

[Esther12]

This is the direct link to the guidance for severe patients:
https://www.leedsandyorkpft.nhs.uk/...ation-for-cfs-me-shared-clinical-practice.pdf

"Working Group on Severe CFS/ME
Shared Clinical Practice Document
Version 1 January 2017"

I only skimmed through but it looked bad, with some mixed stuff in there. Sold with an anecdote with a 'Continuing progress and recovery'section.

The whole positive thinking/hope/helpful-thoughts stuff seems so unpleasent given the limited, but often fairly grim, evidence we have available to us on prognosis and treatment efficacy.

4.1 KEY PRINCIPLES

4.1.1 Instilling hope

4.1.2 Establishing a working relationship

4.1.3 Flexible and collaborative approach

4.1.4 Involvement of family and carers

Helpful thoughts...

It is important for the families and carers to see that positive change can happen with
person specific management plans including practical support and management
techniques tailored to the person’s current capacity and rate of change, allowing for
relapse and plateau