NICE ME/CFS guideline - draft published for consultation - 10th November 2020

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Jonathan Edwards said:
Nobody gets notified in such a way that they are likely to read it. There are far too many guidelines to read regularly. Over a period of time GPs and consultants get exposed to educational material that is supposed to update them but it is fairly optional. Some issues are contentious and everyone gets to know the guideline. others everyone just does what they used to do.
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The only thing I'd add is that, these days, if a GP - or even a consultant - isn't sure how to treat or refer, they'll often consult one of the subscription-based online resources that produces short actionable summaries of the most recent guidelines.

One of the most popular, Medscape's Univadis, published a clinical guidance summary back in November after the draft guidelines were released (although they got things wrong in two places that I can see).

Perhaps it would be helpful, once the guidelines are finalised, for the ME charities to lobby the CCGs directly, asking for changes to be made to commissioned services to make them congruent with the new guideline. It's something we desperately need.
 
lunarainbows said:
@Jonathan Edwards but I would’ve thought a lot has to change - even if GPs only look at it optionally - because the services they’re referring people to will have to change. If the new nice guidelines say CBT is not curative, or get rid of CBT altogether - then local areas won’t / can’t commission that type of CBT or maybe even CBT at all for their clinics can they? I understand they’ll still refer to IAPT and that worries me but if there’s something in the guidelines about making sure any service providers are aware that CBT won’t cure / treat ME and it’s not related to thoughts etc, that should may be enough to dissuade some (even if it had to be done legally). Also they can’t refer to GET anymore.

And physio too - if physical exercise gets taken out (only physical maintenance), it’ll be a very different service.

Also, wouldn’t GPs have to now start offering more home visits etc? And help us access care better (even when referring to hospitals?).

So I would’ve thought there would be huge changes?

And legally surely the guidelines would make a big difference? Like in hospital care for instance. And in places where harm is likely to occur.
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Also - i would hope that the guidelines could at the very least bring about a change in attitudes for most GPs. Even if it’s optional and they get to know it slowly. Like those of us with severe and very severe ME rely on GPs for so much - and then when they’re rubbish we are often on our own. So if they realise they actually need to be empathetic (like the guidelines say), should risk assess, think about where they are referring to (not to an unsuitable environment), talk to patients about accommodations, help them with pain and symptoms, understand that medication needs to be started low.. or we can point it out to them.. all these things too could make a massive difference. So I really hope that things don’t stay much the same! I don’t really see how they can. Especially if accompanied by training and our charities getting really involved in it, producing leaflets or educational information etc.
 
With luck academic psychiatry departments will lose interest in ME research and services will move more towards medical clinics but it will take time.

I really don't know how different things will be in practice for a while. GPs were always supposed to be empathetic and risk assess etc. ... Writing it down will not change whether or not they do it. There needs to be a change of view in continuing medical education circles. At present medical eduction in the GP area is dire - with people like Gerada and Greenhalgh involved. It is driven by GP empire building. My suspicion is that a better approach will only come when GP is absorbed into the rest of medical services and the internal market is abolished.
 
Jonathan Edwards said:
At present medical eduction in the GP area is dire - with people like Gerada and Greenhalgh involved.
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It can quite easily be dire even without Gerada and Greenhalgh.

In my region of New Zealand, we got the regional health authority online guidance for ME/CFS for doctors improved to something that was pretty good. I told my GP about it last year, and she said that she had seen the update notification and had read the care pathway. Over the 4 or so years that I and my son have been her patients, I haven't seen her often, but I have tried to give her a bit of an idea about ME/CFS. All that is to say, my GP should have been as well informed about ME/CFS as most.

But when I needed care for a non-ME/CFS matter recently, including a referral, it became obvious that she was not aware of the content of the online ME/CFS guidance, and that her rather unhelpful view of it seems focussed on fatigue and health anxiety. And that she wasn't aware of changes in the management of the non-ME/CFS illness either. Which is rather sad, and doesn't bode terribly well for rapid change in knowledge in any sort of medical system where continuing professional development has lots of optionality and randomness, and no real check that knowledge is gained.

I have suggested to my regional health board people that there should be a sort of annual Warrant of Fitness (that's what we call the government-required vehicle check here) for doctors. They should be given a few pages with the most crucial updates in their field each year to study, and then have to sit an online multi-choice quiz on the material. Even just a 20 minute test would do. If they fail it, they can do a test again, immediately, but with different questions. And they have to keep doing it until they get all the questions right. That way, you know that, for example, every GP is at least aware of the most important changes in good practice. So hopefully, it's not just the luck of the draw whether you get the GP who showed up to the CPD lecture on something important, or the GP who thought a seminar on mindfulness in a resort somewhere warm would be a more pleasant way to get their CPD credits.
 
I am not sure that one should be despondent about this. I think a huge amount has been achieved. I also think that just as habits tend to get fixed there are times when things suddenly collapse into a new mould.

When I was taken to hospital with labyrinthitis recently I was very pleasantly surprised. Despite this being a condition of no great importance other than being horrible I was gently taken through the process of excluding more serious problems like stroke, with two head scans in two days and lengthy explanation of how to minimise risk factors based on expert knowledge from people who I suspect were once GPs but moved into hospital care in order to be able to do things with self-respect.

These are the people who take note of changes in guidelines and think 'right, we need to do things properly and if this is the evidence we need to use it'. These are plenty of these people around but hey can only thrive if old systems collapse into new possibilities. What I think the NICE guidelines may achieve is a vacuum for the psychiatry-drive approach that in time will implode. But it will take a while.
 
If after the collapse of the CBT/GET approach we see an increase in biomedical research as well as more competent care, I would interpret this as evidence that the collection of ideas associated with CBT/GET prevented progress. I expect to see an increase in research and better care.

One way it has prevented progress is particularly harmful, and that is by depicting patients as having severely misunderstood their own illness. If someone really believes this, they would not take anything patients say seriously (unless of course it confirms their own beliefs). And with patients being silenced in this way, it's difficult to make progress because only patients can tell you what the illness is like.
 
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Jonathan Edwards said:
I am not sure that one should be despondent about this. I think a huge amount has been achieved. I also think that just as habits tend to get fixed there are times when things suddenly collapse into a new mould.

When I was taken to hospital with labyrinthitis recently I was very pleasantly surprised. Despite this being a condition of no great importance other than being horrible I was gently taken through the process of excluding more serious problems like stroke, with two head scans in two days and lengthy explanation of how to minimise risk factors based on expert knowledge from people who I suspect were once GPs but moved into hospital care in order to be able to do things with self-respect.

These are the people who take note of changes in guidelines and think 'right, we need to do things properly and if this is the evidence we need to use it'. These are plenty of these people around but hey can only thrive if old systems collapse into new possibilities. What I think the NICE guidelines may achieve is a vacuum for the psychiatry-drive approach that in time will implode. But it will take a while.
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My neighbour is a (agency) casualty doctor and yes they have to maintain their accreditation i.e. via an examination (not to be taken lightly).
@Hutan
 
Well for me, it’s already made a big difference to my life.

I was able to send these guidelines to a legal team. I’ve been able to cite the guidelines to the medical teams looking after me, and have referred to them needing to risk assess everything they’re doing. I can’t say it’s entirely registered with them yet but at some point it will have to. It backs up everything I’m saying and is an incredible relief. My GP practice nurse looked at them and said they are really good and back up what I’m saying I need.

When they come out I will definitely contact my GP about relevant sections when I need to. And mention them to consultants and ask them to read it. I can tell my GP he has to arrange home visits now, to actually come and see me - and to understand how difficult life is for me. And to arrange better symptomatic treatment for me especially regarding pain.

Even just changing the GP patient relationship alone would have a huge impact, and this even if it helps a little bit could make a difference. Then there’s the fact there’s no more GET - and depending on the changes made - changes to CBT and our management, so I don’t have to be terrified I’ll be sent off to do GET again somewhere. I can actually talk to consultants about my symptoms - without being afraid of being sectioned or what they will do - and recently I’ve actually been doing that, not being so afraid and I’ve even said “look, psychological stress and cognitive effort has worsened my condition, because of what you’ve put me through, so now you need to do a home visit for pre op - do the talking part on the phone with my mum and do the other things on day of admission or through district nurse”. So to me this has already made a huge difference.
 
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There will be a role for the medical education group here. They already have that one hour module. The charities should get together/ forwardME possibly to write to all CCGs to highlight the new nice guidelines and the cpd module. I would be disappointed if they don’t have that in their plans already.

I would then envisage a good research topic for a student about the extent to which guidelines have been put into practice so the charities can then do a report and highlight any falling short which no doubt there will be.

Any individuals as LR exemplifies can use the guidelines to press for better support and any falling short can be highlighted in letters to MPs etc.
 
In the past I've taken four ME Association purple booklets to my local Clinic, one for each G.P. It would be interesting to know if they will be publishing a new one in light of the hopefully improved final updated guidelines.
At the very least the admin staff get to see them.
ETA: They have a free leaflet on their website that mentions the draft guidelines.
 
Hutan said:
It can quite easily be dire even without Gerada and Greenhalgh.

In my region of New Zealand, we got the regional health authority online guidance for ME/CFS for doctors improved to something that was pretty good. I told my GP about it last year, and she said that she had seen the update notification and had read the care pathway. Over the 4 or so years that I and my son have been her patients, I haven't seen her often, but I have tried to give her a bit of an idea about ME/CFS. All that is to say, my GP should have been as well informed about ME/CFS as most.

But when I needed care for a non-ME/CFS matter recently, including a referral, it became obvious that she was not aware of the content of the online ME/CFS guidance, and that her rather unhelpful view of it seems focussed on fatigue and health anxiety. And that she wasn't aware of changes in the management of the non-ME/CFS illness either. Which is rather sad, and doesn't bode terribly well for rapid change in knowledge in any sort of medical system where continuing professional development has lots of optionality and randomness, and no real check that knowledge is gained.

I have suggested to my regional health board people that there should be a sort of annual Warrant of Fitness (that's what we call the government-required vehicle check here) for doctors. They should be given a few pages with the most crucial updates in their field each year to study, and then have to sit an online multi-choice quiz on the material. Even just a 20 minute test would do. If they fail it, they can do a test again, immediately, but with different questions. And they have to keep doing it until they get all the questions right. That way, you know that, for example, every GP is at least aware of the most important changes in good practice. So hopefully, it's not just the luck of the draw whether you get the GP who showed up to the CPD lecture on something important, or the GP who thought a seminar on mindfulness in a resort somewhere warm would be a more pleasant way to get their CPD credits.
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One thing LC has shown is that far from being a fringe view, the ME-BPS view is actually fully mainstream. It's basically unquestionable gospel for the most part, right there with maligning any criticism of it as personal attacks. No one dares openly challenge it, attacks are immediate.

Despite having no impact whatsoever on outcomes, the model has been sold and bought in full. That much is very clear now. There is something attractive about an alternative approach to medicine where you can basically make up whatever you want without consequences. Maybe there is something liberating about it. As if it's some vehicle to take all that pent-up anger many harbor towards difficult patients onto a patient population for which it is encouraged to be cruel with.

Those who don't buy into it are pretty much universally silent, there is clearly enormous group pressure to not challenge the ideology, lest all the cruel harm it has done be acknowledged. I thought it would be too embarrassing to propose the BPS model for LC and yet it has basically been the near universal response. To think I was not nearly cynical enough.

I feel really bad for telling many long haulers that help was on the way. I really thought it was. Instead medicine has clearly doubled down. Truly all hopes on the NIH, nothing else has a chance of having an impact. Or if long haulers start to get mad and have many healthy former LC allies. They better do, window's closing quickly. BPS stuff is cheap and already packaged, research is the very opposite.
 
Jonathan Edwards said:
Nobody gets notified in such a way that they are likely to read it. There are far too many guidelines to read regularly. Over a period of time GPs and consultants get exposed to educational material that is supposed to update them but it is fairly optional. Some issues are contentious and everyone gets to know the guideline. others everyone just does what they used to do.

I am not sure if the new guidelines, assuming they are like the draft, will make much difference to GP practice. GPs that refer for CBT are likely to continue and therapists will accept patients on a 'coping' basis. GPs that refer to physios will continue. Physios may be informed enough to recommend something different but it will vary.

The situation for specialists is hard to guess. Of the few that exist those that are already informed will not change much - they already know the issues. Those that like BPS treatments may have to scratch their heads.

I guess that my overall view of this is that not so very much may change in terms of clinical care at least for now. The main change will be in the status of the research as a basis for clinical care - it has been rejected. But physios may come to see that they need to do things differently. Covid may have a big impact on that too. I am not very optimistic that clinical psychologist will believe that the new guidelines are valid. They will carry on in their fantasy world. What might make a difference is if budget holders start restricting use of psychology, but if they had had a motivation to do that they would have done it long ago.
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The main impact will be on the decision making process at the new regional level- Joint Strategic Commissioning Process within each CCG Alliance or 'Sustainability & Transformation' planning mechanism.
Patient Groups can involve local Health Overview and Scrutiny Committees to make sure the application of NICE is according to patient needs established through a co production process.
at least that is our experience in Suffolk ( who are willing) and Norfolk (who, with Waveney CCG in the steer, are not and are positively obstructive....) Just saying! Ask Invest ion ME and Ian Gibson!
They will go through the process, cost it and say we can't afford it....
 
rvallee said:
One thing LC has shown is that far from being a fringe view, the ME-BPS view is actually fully mainstream. It's basically unquestionable gospel for the most part, right there with maligning any criticism of it as personal attacks. No one dares openly challenge it, attacks are immediate.
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I realise that I have a revisionist view of history, but I would argue that te "ME-BPS" model has been fully mainstream internationally since at least 1985. The model is clearly based on the "illness behaviour model" discussed at the international conference in Toronto. The major participants were from the USA and Canada, along with Issy Pilowsky from Australia. The UK participants Maayou and Brown are not significantly associated with ME.
 
What is he referring to? The NICE draft does not synthesise qualitative evidence as far as I am aware?
The guideline is based on an assessment of formal evidence.
I thought it was Turner-Stokes wanted a different interpretation of the qualitative evidence - not the Garner/GRADE crowd.
Why is Garner now so keen to discredit NICE? Is it to please his friend Mrs Floptop?
It is not normal for professionals to discredit their peers in this way with tweeting.
Garner is accusing Peter Barry and Ilora Finlay of incompetence.
The odd thing is that Garner appears so out of touch with the background.
 
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