NICE to update guidelines for MS - Oct 2018

2018 surveillance of multiple sclerosis in adults: management (NICE guideline CG186)

"Recommendation 1.5.5 recommends that mindfulness‑based training, cognitive behavioural therapy or fatigue management are considered for treating MS‑related fatigue. New evidence indicates that these interventions are effective in reducing fatigue in people with MS"

https://www.nice.org.uk/guidance/cg...ecision?tab=evidence#reasons-for-the-decision


eta: existing guidelines for MS
https://www.nice.org.uk/guidance/cg186/chapter/1-Recommendations

 

Some maybe relevant references on S4ME:

https://www.s4me.info/threads/nice-...-assessment-published.6195/page-2#post-112322

https://www.s4me.info/threads/nice-...-assessment-published.6195/page-3#post-115923

https://www.s4me.info/threads/cochrane-review-and-the-pace-trial.2529/page-3#post-92481

https://www.s4me.info/threads/objec...igue-and-fatiguability-lurija-institute.4241/

 

IAPT £££££££ here we come........

 

I wish someone would do a trial of mindfulness versus the patient spending the same amount of time doing a hobby they enjoy ( and can still manage) . I doubt that mindfulness would be superior. Of course that's my bias at work! I'm quite sure over the lifetime of an illness CBT/ mindfulness make no difference, but the trials will be short term as usual. Let's hope MS patients kick up a fuss.

 

Can not face reading yet more bad research, but presumably the evidence for this change is open labelled trials with subjective measures and biased or inadequate controls.

 

see these posts
https://www.s4me.info/threads/watt-from-mrc-defends-pace-in-letter-to-times.5491/page-5#post-99410
https://www.s4me.info/threads/watt-from-mrc-defends-pace-in-letter-to-times.5491/page-8#post-99590

so I'm guessing it's the latest from Moss-Morris

see also:
https://www.kingshealthpartners.org/our-work/mind-and-body/our-projects/reeditt-compass

 

That's ultimately what this is all about. All the unethical political influence working to elevate ME research, PACE, Cochrane. All of it is a stepping stone to the belief that we can train chronically ill people to overcome their illness, get them back to work and let medical professionals focus on life-threatening acute cases.

There is merit to helping people cope, but this ideological pursuit is based on assumptions about illness that are borderline delusional, that chronic pain, headaches, nausea, brain fog, fatigue and the whole slurry of symptoms from those chronic diseases can somehow get easier to handle over time and if you just don't think about them they won't be so bad.

I don't doubt that there are some good intentions but it just doesn't work like that. The symptoms of sickness, especially pain, are meant to be high-priority signals. It's necessary for survival.

But to push this nonsense while it still had no evidence base and at the direct expense of research funding that could actually make the whole exercise obsolete is serious malpractice. It's pure magical thinking to maintain that it merits this much focus and effort.

 

Well I thought we were always being told that 25% of people experience mental health problems? So an extra 5% over that isn't much given how devastating LTCs can be.

 

All the recent signs from NICE I've seen indicate an embrace of waffly holistic biopsychosocial care on the basis of junk-science. This is not a great sign for the ME/CFS guidelines, or for the UK as a society.

 

Ppl with ME are used to this crap quality research so we have experience fighting it. Bet those with other illnesses will offer less resistance at first when this sort of crap is proposed to be added to the treatment of their illnesses. I guess in ten or twenty years time there will be a big push back against it across medicine, but it's too easy for them to promote this crap at the moment.

 

Hopefully the patient organisations for those diseases will not be misled, but I doubt that they understand the vileness of what is about to be pushed on them. It's hard to imagine doctors being so motivated to inflict harm.

If only we had the capacity to organized and work with them to prevent any of this to take hold but I fear they will assume it is done in good faith and embrace it at first. Patients themselves may have to end up doing most of the work as the charities will be pressured into not causing issues.

 

https://twitter.com/user/status/1062254577284718593

https://twitter.com/user/status/1063342909720850433


eta: details
https://twitter.com/user/status/1062414471136772096

 

Primary progressive MS - that's MS from birth on? I didn't know that this exists?

Edit: It really seems discrimination against sick is gaining momentum.

 

It's not from birth. It means that the patient has no episodes of remission. The commonest form is relapsing/ remitting, which may eventually become secondary progressive. It is possible that the evidence for benefit in PPMS of octrezulimab is weak.

 

'The MS hug' : symptom I was not aware of and thought might be of interest

https://www.mstrust.org.uk/a-z/ms-hug#what-is-the-ms-hug

 

Well we can join forces with the ME organizations against mindfulness fraudulent reasearch, and any other disease they try for.