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

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.
 
anniekim said:
As the NICE guidelines are classed I believe as advisory and not binding, would this weaken citing them in any court case by an individual claiming harm by being prescribed GET?
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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.
 
Good questions, @Invisible Woman. And, @adambeyoncelowe.

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The issue here is that these were not actually baselines, because a baseline should be agreed between the patient and the therapist and should by definition be sustainable. The problem was that the therapists thought that they could set baselines for the patient, not that baselines per se are unsustainable. This is an example of poor quality rehabilitation in some settings, not a problem with baselines as such.
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Completely and utterly wrong.

There is no baseline, or at least it is too unstable to be of practical use. IOW, it isn't a 'baseline' in any useful practical sense of the word. That is one of the fundamental problems in dealing with this disease.

What patients have to figure out, to the degree it is possible, is how to live without a stable predictable baseline. Which is a whole different game from finding a stable predictable baseline, and then making safe progress from it.

To the extent baseline means anything for most of us it is probably when we have to stop moving, lie down in a dark quiet room, and ride it out for however long it takes.

Pretending that manipulating the patient into a bogus agreement, based on a falsehood, is some kind of legit therapeutic or management practice is dishonest and plain nuts. How does the whole notion of 'agreement' even work when nobody knows what is going on? What are we 'agreeing' on? Pointless intrusive micro-managing of our lives to provide a justification for the clinician's authority and employment?

If you want an example of just how little they understand this disease, how they still see it all through the lens of the psycho-behavioural rehabilitative model, this bit of drivel is a biggie.

If this is any taste of the ongoing resistance we will face to real change – and it increasingly looks like it – then it is time to start also preparing for the law suits. They will have to be forced into compliance via a few high profile cases and large malpractice payouts.

Yeah, it is risky. But pick our test cases and lawyers well, and they will have a decent chance. We may not have a choice.
 
Joel said:
This guideline is a great victory. Well done everyone who has made it happen.

We’ve won the battle but not the war yet, it seems to me. The clinics will try to carry on, just rebrand away from GET and toward non-fixed “paced” activity. Probably they will even drop the word activity. Nothing meaningful will change if they get their way.

The next battleground is commissioning, to dump the bad practice and genuinely shape clinics to adopt the new guidelines in ways that actually serve patients. Are patient orgs working together on this yet?
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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.
 
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.
 
Joel said:
The next battleground is commissioning, to dump the bad practice and genuinely shape clinics to adopt the new guidelines in ways that actually serve patients.
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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/
 
CRG said:
provision of a secure diagnosis
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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/
The NHS Transformation Unit is experienced in delivering services throughout the transformational change process. The STP team specialise in a broad range of services to support clinical redesign, taking ideas for change from a point of concept through to the stage where a decision is made on implementing the most suitable solution. We can offer services supporting reform of a single clinical pathway in one site or system change for a whole region.
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