United Kingdom: BACME Guidelines for Severe ME, 2019 and 2024 update

Sly Saint

Sly Saint

Senior Member (Voting Rights)
New BACME guidelines for severe ME

See post #17 for copy of the 2019 BACME document and post #43 for the 2024 update

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The Sussex ME Society works for the nearly 5,000 people in the county affected by Myalgic Encephalopathy (ME) or Chronic Fatigue Syndrome(CFS) including many people from the LGBT communities here in Brighton and Hove.

THE charity is launching new guidelines for doctors that are caring for those who are most severely affected by the condition.

The document has been produced by the British Association for Chronic Fatigue Syndrome/ME (BACME) and includes experienced clinicians involved in the diagnosis and management of patients with severe ME."
https://www.gscene.com/news/new-doctors-guidelines-for-severe-me/

Doctors Guidelines for Severe ME – January
By admin On 28th January 2019
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The Sussex & Kent ME Society that works for the over 9,000 adults and children in the counties affected by ME or Chronic fatigue syndrome is launching new guidelines for doctors that are caring for those that are most severely affected by the illness.
The document has been produced by the British Association for Chronic fatigue syndrome/ME (BACME) that includes experienced clinicians involved in the diagnosis and management of patients with severe ME. It is designed to help professionals dealing with those that are house or bedbound to feel able to better understand the condition, and find a way forward in managing the complex illness to improve the patients quality of life.
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https://measussex.org.uk/doctors-guidelines-for-severe-me-january/

haven't found the actual guidelines yet!

eta: given Colin Bartons track record and BACMEs I'm sure we are all concerned.
eta2: this is a bit weird tho, why are they the ones launching it?
 
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The bacme published some severe ME guidance as far as a couple of years back but didn’t put them on their site for some reason. As a severe I really dont want that group launching guidelines on us. There’s been debate on them before maybe on PR, a mixed bag from what I recall.
 
Considering who the MEASussex is collaborating with, there are reasons to be concerned:

The prognosis of CFS/ME – Dr Alastair Miller
Despite a huge investment in biomedical research in the field of CFS/ME, there is still no unifying mechanism that explains the development and persistence of the syndrome. Neither is there a simple laboratory test that can confirm nor exclude the diagnosis. The diagnosis remains a clinical one made by an experienced clinician and based on a very characteristic pattern of symptoms. Although every patient’s experience may differ, the overall constellation of features makes the diagnosis clear so it is a positive diagnosis rather than a “diagnosis of exclusion” (although it is usual to perform a number of simple laboratory investigations to ensure that no alternative or additional diagnosis exists).

Once the diagnosis has been established there are two questions on everyone’s mind. What is the treatment and what is the prognosis (outlook)? I have not been asked to review the treatment here and it remains controversial but suffice it to say that in line with the lack of a disease mechanism there is similarly, a total absence of pharmacological approaches to treatment. So although some drugs may be helpful in relieving specific symptoms, there is no drug that will affect the overall natural history of the condition and effect a “cure”. Although NICE guidelines and the PACE trial remain contentious amongst some patient groups there is absolutely no doubt in my mind that the current approaches of cognitive behavior therapy (CBT) and Graded Exercise Therapy (GET) have helped and continue to help a large number of people to recover from the condition. This is based on my own personal experience, trial evidence (PACE and others), anecdotal experience from colleagues and patients and data from the National Outcomes Database (NOD).

Many of the websites give (in my view) an unrealistically gloomy picture of the outcome for CFS/ME. It is likely that those who still suffer from the condition may contribute more vociferously to the websites whereas those who have recovered may prefer to move on. Apart from the NOD there is little scientific data on which to prognosticate so my views are based largely on anecdotal experience gathered over a 30 year career of involvement with this condition. However, they are largely in accord with the NOD data.

In my view the simplest way to think about prognosis is in “thirds”. Using best available therapy (CBT/GET delivered by trained and experienced therapists), approximately a third of patients will make a full recovery and return to their pre morbid activity, about a third will improve but not recover fully and about a third will stay the same (and a small number may deteriorate).
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https://measussex.org.uk/what-is-me-or-cfs/
 
Cheshire said:
Considering who the MEASussex is collaborating with, there are reasons to be concerned:



https://measussex.org.uk/what-is-me-or-cfs/
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Well that sent a chill down my spine, possibly because i don’t have enough energy for fear or anger.

When i read it i thought i was reading some old guidelines but the link on their website took me to this too. So this ‘is’ the current guidelines??

And Allistair Miller is now retired from ME practice?

Please tell me i’m completely wrong and my brain fog is confusing me.
 
Hell..hath..no..fury... said:
Well that sent a chill down my spine, possibly because i don’t have enough energy for fear or anger.

When i read it i thought i was reading some old guidelines but the link on their website took me to this too. So this ‘is’ the current guidelines??

And Allistair Miller is now retired from ME practice?

Please tell me i’m completely wrong and my brain fog is confusing me.
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No, this is not in the new guidelines, but is in the section 'what is ME and CFS' of the Sussex & Kent ME/CFS Society website.
 
Cinders66 said:
https://www.leedsandyorkpft.nhs.uk/...ation-for-cfs-me-shared-clinical-practice.pdf

This is the link you posted on PR @Sly Saint ;-p

Was this an early draft ?
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no idea; it says version 1, so maybe this is version 2? still haven't found it tho'

There are several threads on the Sussex and Kent ME Society here (search sussex in thread title).

but as AfME also back BACME
"The British Association for CFS/M.E. (BACME) also publishes a therapy and symptom management guide. This practical clinical treatment summary incorporates existing tools and methodologies from specialists who work with adults and children who have M.E., and offers a consensus approach to broader treatment based on clinician expertise, patient experience and the best available evidence. It's free to download at BACME's website." (On AfME website)

I'm surprised that they are not the ones 'launching' it.

Do the MEA know anything?
@Russell Fleming

on the article it says
"The guidelines are available by calling 01273 674828"

anyone fancy giving them a ring?

eta: it just occurred to me that as BACME were previously closely aligned to AYME (there were also some financial ties) maybe (now AYME no longer exist, in name anyway) they (BACME) have joined up with the Sussex ME Society as a 'good fit'.
 
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Andy said:
Just sent this email,

I'm going to err on the side of caution and not hold my breath until I receive it.
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There are no valid reasons to keep medical guidelines a secret. It would show awareness that the material is problematic, which will create all sorts of legal implications in the future. Keep the pressure on, this is good.

Surely the clinics have such material as well? Probably in the same file cabinet as the "there is no disease" Christmas pamphlet. Definitely worth making requests for any and all material used in practice. There are probably policy guides used at the higher levels as well, although it will definitely take many FOI requests to get through it all.
 
Sly Saint said:
but as AfME also back BACME
"The British Association for CFS/M.E. (BACME) also publishes a therapy and symptom management guide. This practical clinical treatment summary incorporates existing tools and methodologies from specialists who work with adults and children who have M.E., and offers a consensus approach to broader treatment based on clinician expertise, patient experience and the best available evidence. It's free to download at BACME's website." (On AfME website)
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Bleurgh.
 
Glancing through the document it seems to be a mix of good and bad. It has good recognition of the severity, symptoms and needs, including access to home visits for medical care, but the advice on treatment seems to focus a lot on rehabilitation, activity planning, incremental increases in activity, and normalising sleep patterns.

I can see the point of the planning in terms of breaking down activities into smaller increments and resting in between, but it all sounds too rigid, and too geared to the mantra of 'find your baseline and start increasing' which may not be possible for some people.
 
I have read most of it; as @Trish says some of it sounds reasonable but the underlying tone seems to be very much to do with a combination of deconditioning, and Mayo clinics approach (ie seeing all symptoms as 'allergy type intolerances') combined with fear avoidance.

bits like this
"However, if providing aids and adaptations (particularly permanent changes to the home), clinicians should carefully consider the message this might give the patient about their prognosis, and the potentially limiting influence they may have longer-term on recovery.

Depending on the circumstances, therapists should encourage the patient to view such aids as potentially temporary to assist them now, and not necessarily permanent.

Therapists should also consider whether there is a review process in place to ensure these remain appropriate should the patient’s condition improve."
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are dangerous imo, as surely it should be up to the patient to decide whether or not aids are still necessary.

I also have concerns with:
"
BACME Severely Affected Working Group contributors

Ms Mary Jane Willows, Chief Executive AYME and BACME executive"

and
"We would also like to acknowledge and thank additional contributions/feedback from :

Prof Esther Crawley, University of Bristol
Dr Hazel O’Dowd, Bristol CFS/ME Service"

Appendix C Inpatient services
National Inpatient Centre for Psychological Medicine (NICPM)
previously known as the Yorkshire Centre for Psychological Medicine (YCPM), Leeds
https://www.leedsandyorkpft.nhs.uk/our-services/services-list/nicpm/
This service takes referrals from all across the UK, i.e. from multiple commissioners and on a cost per case basis and provides expert multidisciplinary biopsychosocial assessment and treatment in an inpatient ward in a general hospital setting.
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Appendix D Children and Young People with CFS/ME
The Royal College of Paediatrics defines ‘severe CFS/ME’ in children and young people as ‘effectively housebound’ and ‘very severe’ as ‘effectively bedridden’ for a period of at least 3 months.
Royal College of Paediatrics and Child Health: Evidence based guidelines for the management of CFS/ME in children and young people (2004)
http://rcpch.adlibhosting.com/Details/archive/110001368
https://ep.bmj.com/content/90/2/ep46
Patient support organisation for young persons with CFS/ME
https://www.actionforme.org.uk/children-and-young-people/introduction/
Services that see Children and Young people with CFS/ME can be found via BACME website www.bacme.info
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@Naomi10 given your past/present experience, what is your opinion of this?
 
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