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

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.

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

 

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.

https://twitter.com/user/status/1020237712664776704


he also retweeted this:
https://twitter.com/user/status/1016984282252890113

 

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/