UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

Thanks Andy, that’s great.

 

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PhysioUpdate News | Exercise - Oct 29, 2021

https://www.physioupdate.co.uk/news...elcomes-nice-guidelines-break-from-the-past-/

 

I guess this is from BACME:

Members are concerned that evidence supporting existing and successful specialist practices that patients report have positively impacted their condition are universally omitted. In our combined extensive clinical experience patients seen in our service have done well in terms of measurable, improved outcomes and data exists to support these claims.

It illustrates the complete failure to understand how you gather evidence of treatment efficacy. If you have no control group you have no way of knowing that improved outcomes have anything to do with the treatment. However much data you have it means nothing with controls.

Therapists need to learn that the traditional teaching in their professions - that you can tell your treatment is working just from doing it - is no good. It isn't their fault that they have grown upon this culture but they have a responsibility to see now how invalid it is.

 

I think the difficult bit would be proving harm. But if harm was accepted then I think going outside NICE guidance would be considered irresponsible behaviour - in the context of the background on reports of harm from GET.

 

https://twitter.com/user/status/1454384207514505219

 

The importance of people with MS staying within their energy limits is emphasised by NICE

My bolding
@PhysiosforME

 

Agree with that. I don't have the energy for any such undertaking, but I think it might be time that chronic patients stand up together to the bad science underpinning the CBT/GET trials for all diseases impacted. It's seeping into so much stuff that a huge coalition should be possible. Would be a massive undertaking though and it's easy for me to shout from the bylines it should happen without being able to contribute myself. This BS has to stop though, it's now harming so many people in one way or another.

 

Sorry if I'm duplicating something already posted. Looks like Phil Hammond is indulging in a little bit of revisionism.

https://twitter.com/user/status/1454182659119325195

 

You must admit, it is entertaining to watch.

There are those who fall into the Miller camp and say no-one is doing GET as per PACE anyway. Haven't done for years.

And those in the Chalder camp who say that we must follow the evidence based treatments. PACE providing the evidence.

Somehow they all seem to be in the same camp.

 

And this.

 

Maybe all in one big tent p***ing out in different directions?

 

Essential that this is done through co-operation between the patient groups, and good to hear that is in hand.

Commissioning on the basis of the new Guideline concerns not just improving the existing clinics but also the funding and provision of services where none are currently provided, including ensuring that Primary care has the resources to at least fulfill the basics of testing, provision of a secure diagnosis and a supported care plan. Following COVID it seems there are no functioning ME/CFS services in Wales, nothing in NI and perhaps just one in five of English CCGs currently funds specialist ME/CFS services. And any Scottish services are outside the NICE update.

A further complication is the patchwork existence of Integrated care systems [1] which will likely have growing influence on what services are provided where.

[1] https://www.england.nhs.uk/integratedcare/what-is-integrated-care/ and https://www.england.nhs.uk/integratedcare/how-did-we-get-here/

 

So the latest gaslighting is that no one was really trying to cure ME with CBT or using GET.

 

Yep. I hadn't realised that inclusion of PEM as a required symptom was even an issue outside of small research studies with frustratingly loosely-defined cohorts, until all the bleating about NICE having made it up. There needs to be yet another (sigh) discussion about agreeing which case definition must be used.

I even wondered last night whether the selection criteria established for DecodeME might come in useful. Probably not useful/appropriate in a clinic, but if they aren't even starting from the basis of a rigorous diagnosis, any evidence they gather is absolutely bloody useless.

 

I meant to include this in the post above: https://transformationunitgm.nhs.uk...mation-and-strategic-planning-implementation/

 

https://twitter.com/user/status/1454454570982252545


https://twitter.com/user/status/1454455568232497160