[Time for commenting has passed]Birmingham UK CCG DRAFT Policy for the treatment of Chronic Fatigue Syndrome (CFS) / Myalgic Encephalomyelitis (ME)

[Esther12]

Just came upon this, published 10 May 2018:
https://sandwellandwestbhamccg.nhs....reatment-of-cfs-me-engagement-09-05-2018/file

Their public engagement page says that the time for commenting has passed, so maybe not worth posting here.... but there's not much to lose.

Following on from new treatment policies published in 20016/17, in July 2017 Sandwell and West Birmingham CCG began working with clinicians and key stakeholders to discuss and assess the evidence and current guidance relating to 21 further treatments and procedures. As a result draft policies have been created in the areas listed below.

The table shows the treatment or procedure, details of the prosposed changes and an opportunity for you to read the full policy as well as a patient friendly leaflet.

We have completed an engagement exercise to listen and understand the thoughts and views on the proposed new harmonised treatment policies with members of the public, patients and key stakeholder groups. This was completed by carrying out an online survey and we held a number of engagement events across the local area between 14 May and 22 June 2018.

We would like to thank everyone who has taking the time to share their views. We are currently in the process of evaluating all the feedback and a final report will be published in the near future.

20. Treatment for Chronic Fatigue Syndrome

Chronic Fatigue Syndrome (CFS) is also referred to as Myalgic Encephalomyelitis (ME) or Post Viral Fatigue Syndrome, it is characterised by long term tiredness that affects everyday life and does not go away with sleep or rest. It can encompass both physical (e.g. fatigue) and psychological difficulties (e.g. muddled thinking).

In patient care or therapy in a residential setting are not routinely commissioned for the treatment of CFS / ME due to the lack of clinical evidence to support this intervention. Patients should be referred for specialist assessment and offered out-patient therapy in the form of a PACE programme comprising of CBT/exercise therapy as appropriate.

See full policy for more details.
No current policy

NICE (2007). Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management. https://www.nice.org.uk/guidance/cg53

See draft patient leaflet.

https://sandwellandwestbhamccg.nhs.uk/public-engagement

 

[Trish]

''it is characterised by long term tiredness''
''out-patient therapy in the form of a PACE programme comprising of CBT/exercise therapy''

Oh dear. Now they are even naming it a PACE programme. When did that start happening? And they have no idea what ME/CFS is.
I haven't dared look at what my local CCG says about ME.

 

[Sly Saint]

this was retweeted by MP Tom Watson (one of the four MPs for Sandwell area)
might be worth tweeting back and linking to the parl debate tweet (with MP holding PACE edition of JHP, its on David Marks twitter feed); asking why is the NHS pushing a debunked treatment.



he also retweeted this:

 

[Sly Saint]

The service appears to have been replaced with a Long Covid clinic and much of the info is about
post-viral fatigue or post-covid fatigue as they also refer to it.

The biggest irony is this

"
Post Exertional Malaise
A worsening of your fatigue after exertion
It is common to experience tiredness and fatigue during and even after an episode of illness. Fatigue for weeks or months after a serious illness can be quite normal. People who are recovering from an illness often report feeling a little better each day, it can take time to fully recover. With Long COVID you may feel fatigued after activities which were not previously difficult to cope with and this can affect your quality of life and ability to function as you did previously. This is more likely to occur at the end of the day or at the end of a busy week.

Sometimes people experience a number of other symptoms worsening after physical stress. This could include brain fog, muscle aches or headaches alongside increased fatigue. Clinicians may call these “post exertional symptoms”. They are not in themselves dangerous but can affect your quality of life."

which is absent on most if not all NHS websites for ME/CFS.


https://www.yourcovidrecovery.nhs.uk/managing-the-effects/effects-on-your-body/fatigue/