NICE to update guidelines for MS - Oct 2018

Sly Saint

Sly Saint

Senior Member (Voting Rights)
2018 surveillance of multiple sclerosis in adults: management (NICE guideline CG186)

Reasons for the decision
This section provides a summary of the areas that will be updated and the reasons for the decision to update.

Updated diagnostic criteria for MS will have an impact on recommendation 1.1. The implications of the changes in diagnostic criteria and MS classification on the information and support patients receive in recommendation 1.2 should be also be considered.

Recommendation 1.5 on MS symptom management and rehabilitation needs updating in the areas of pharmacological management of fatigue, mobility and spasticity and also for non-pharmacological management of fatigue, mobility, balance, pain and cognition. At present, the recommendation addresses each symptom separately, and has not considered how different interventions may address multiple symptoms, or the possible interactive effects of prescribing multiple pharmacotherapies for different symptoms. Therefore, a more integrated, patient-centred rehabilitation approach addressing multiple aspects of care should be considered when this recommendation is updated.
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"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
 
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Sly Saint said:
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
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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.
 
Peter Trewhitt said:
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.
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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
 
Suffolkres said:
IAPT £££££££ here we come........
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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.
 
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.
 
Joel said:
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.
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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.
 
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.
 
Inara said:
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.
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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
What is the MS hug?
The MS hug, also known as banding or girdling, is a symptom of multiple sclerosis in which someone feels as if they have chest pain, rib pain or a tight uncomfortable band around their chest. It can be felt anywhere between the neck and the waist and may feel so tight around the chest that it’s painful to breathe. For some people, it can be pressure on just one side of their body.

Some people experience a symptom similar to the MS hug but in their hands or feet, where it feels as though you are constantly wearing gloves or boots. For others, the tight feeling is around the head. The feeling can range from annoying to very painful. The feeling is different for everyone and may be described as pressure, an ache, a tickle, a pain or a burning feeling. It may be sharp or dull and can be short or long lasting.
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https://www.mstrust.org.uk/a-z/ms-hug#what-is-the-ms-hug
 
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