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

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Jonathan Edwards said:
It is simply a matter of too much to respond to adequately.
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I also believe this is the case. As a matter of policy, a body that issues a draft cannot really completely undo the draft just like that without causing incredible problems for itself. It would be a reputational disaster for NICE to decide, after producing a draft based on a thorough evidence review, that it was all a mistake and that CBT and GET are now fine. If that's the case, it would really require an entirely new process because it would essentially be a completely different guidance. As an organizational matter, NICE would have an impossible time explaining that and retaining any credibility. At some point, NICE's own institutional instinct not to completely undermine its own processes and appear to be buckling under outside pressure should kick in, if it hasn't already. I wouldn't be at all surprised at wording changes around the edges that make it easier for CBT and exercise people to offer something that would appear to be in line with the guidance.
 
dave30th said:
I also believe this is the case. As a matter of policy, a body that issues a draft cannot really completely undo the draft just like that without causing incredible problems for itself. It would be a reputational disaster for NICE to decide, after producing a draft based on a thorough evidence review, that it was all a mistake and that CBT and GET are now fine. If that's the case, it would really require an entirely new process because it would essentially be a completely different guidance. As an organizational matter, NICE would have an impossible time explaining that and retaining any credibility. At some point, NICE's own institutional instinct not to completely undermine its own processes and appear to be buckling under outside pressure should kick in, if it hasn't already. I wouldn't be at all surprised at wording changes around the edges that make it easier for CBT and exercise people to offer something that would appear to be in line with the guidance.
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I broadly agree with that, but worry exactly how much tinkering around the edges the BPS folk might be able to provoke. Hopefully not.
 
dave30th said:
As a matter of policy, a body that issues a draft cannot really completely undo the draft just like that without causing incredible problems for itself. It would be a reputational disaster for NICE to decide, after producing a draft based on a thorough evidence review, that it was all a mistake and that CBT and GET are now fine.
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Depends how much harm is promised to be dished out privately. We saw glimpses of this when Cochrane announced retraction of the exercise review, Gerada and a few others basically promising the kind of scorched earth that can be more damaging than doing the right thing, trashing the publication as a whole, which coming from a former head of the RCGP carries a lot of weight, with a complete end to the threats after Cochrane caved, publicly anyway.

I'm not saying this will work but I doubt the harm done would be noticed by anyone, in fact it would likely be hailed as a victory for science and not caving in to activists, which has been the main theme so far. I think we are truly that hated, the propaganda worked very well.

My point is we can't rely on what's normal and having truth on our side, in politics those are completely irrelevant when the balance of power is in the wrong hands, and this issue is 99% political. There are no GOTCHA! moments in politics, where someone makes an impassioned speech based on the facts and everyone claps and the opinion-havers relent, that's only in movies. Sometimes you can do everything right and still lose.

I have no idea what to do about it but it would be nice to be prepared, to have information about what is happening behind the scenes because there is sure to be a lot, there are billions riding on this and, more importantly, too many egos will be massively embarassed.
 
If they cannot influence a change in the draft at this point I expect the BPS to continue to damage the process from the outside by using the hilarious and outrageous slaging of ill vulnerable people and declare that we have subverted science with our militant lobbying. We all know how hypocritical it is to make THAT accusation.

But they have gotten away with so much over the years. What's needed is for the rank and file in medicine to start to take close note and start scrutinising the received wisdom from BPS (that part is Gerada's job to keep them onside by showing how much they care vs those nasty militant heartsink patients who they are free to dislike with impunity).

Regardless, the more exposure DT's Virology blogs and Brian Hughes The Science Bit get outside the ME community bubble the more science is kept front and centre of discussion rather than allowing the BPS to dictate discussion that basically amounts to an illusionists trick "look over here we want you to focus on this" because looking elsewhere exposes the illusion.

I hope the NICE guidelines turn out much like the draft (only better). But that will not stop the momentum of the massive death star from hurtling forward in it's underwritten objective to obliterate any vestige of science around medically difficult to diagnose illnesses.
 
Kitty said:
I agree, but I've been trying to reassure myself that NICE and the NHS don't themselves have an interest in the BPS approaches. There's no point spending money on clinics and services that don't help, when patients could be managed via existing GP resources.
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NICE includes several people, some of which I have a fairly clear idea of the psychology of. For some there is indeed a vested interest - coming from general practice, valuing the option of dumping patients elsewhere and not rocking boats; believing in curbing big Pharma but not necessarily nice psychologists. For others the penny dropped a good while ago but boat rocking was still a worry. Fortunately at some point it seems some respectable boat rockers were drafted in. But I don't think the situation has been straightforward.
 
Jonathan Edwards said:
NICE includes several people, some of which I have a fairly clear idea of the psychology of. For some there is indeed a vested interest - coming from general practice, valuing the option of dumping patients elsewhere and not rocking boats; believing in curbing big Pharma but not necessarily nice psychologists. For others the penny dropped a good while ago but boat rocking was still a worry. Fortunately at some point it seems some respectable boat rockers were drafted in. But I don't think the situation has been straightforward.
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[possibly misattributing here] I think you've touched on the concern that we're saying no to CBT & GET but not having an alternative - I assume the alternative would be to fund specialist Doctors and support research.
 
Barry said:
These people are so powerful, so deeply manipulative, so skilled at social engineering, and so good at normalising the outrageous,
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...and so utterly ruthless about it all.
Snowdrop said:
But they have gotten away with so much over the years. What's needed is for the rank and file in medicine to start to take close note and start scrutinising the received wisdom from BPS
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This.
 
I’ve only just realised that in the guidelines it says to refer to a dietitian specialising in ME/CFS if they are losing weight, at risk of malnutrition or have restricted diet. And to send all PwSevere ME to one. This is amazing! So hopefully theres going to be specialist dieticians within each service? I cannot tell you how many times I’ve desperately wanted some help and am scared that I’m losing weight because of ME related reasons… such as now (partly related to ME, partly other things which also have a knock on effect on ME)…but never get help and instead just get underweight.. but can’t go to GP because they won’t understand and I don’t want to end up in hospital where they’ll decide it’s psychiatric, which would be the worst possible place to be. And I really struggle a lot and try to figure things out myself. It’s hard for my family too to see that. This way people with ME esp those with severe ME have a pathway to get help. And I like how that section has set out exactly why we would have problems - altered taste and smell, nausea, swallowing and chewing problems, intolerances. So that GPs and doctors can be in no doubt that it’s not psychiatric causes! :)

This will help PwME so much. Was reading through the guidelines again a few days ago and was amazed all over again how many good things are in it. I loved re-reading parts are 1.1.8 - 1.1.11, and 1.1.2 and 1.1.3. It is so validating. got some feedback from a doctor that they are very useful and detailed too. :) :)
 
Peter Trewhitt said:
Thank you for pointing this out.

I have got stuck in focusing on what the new guidelines may fail to achieve, and forgotten how big a step forward the draft represents.
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Yes, there’s so many amazing things in the draft, it’s a complete change of attitude. There’s so much more compassion shown to PwME. Things like - PwME may have encountered disbelief and prejudice and be aware of how that affects them. Children having unpredictable symptoms of ME is not abuse. Care for those with severe ME should be carried out wherever possible by a person known to them and their families and who understands the illness. Build supportive and trusting relationships. Risk assess interaction with Pw severe ME, and Pw severe ME may live in dark and quiet rooms with little or no social contact, and the very severe symptoms - at last we shouldn’t have to feel as frightened about what medical staff think of these things. our reality is actually reflected in these guidelines, and with kindness. It’s such a relief reading them even now, even though I’ve obviously read them many times!

The thing that frustrates me is the system of healthcare itself, having to deal with the system is extremely stressful and there are so many issues with communication, people not wanting to help, their own prejudices and harmful attitudes etc. But reading through the guidelines, i can see how much more this is going to help us. It’s still going to be difficult to implement, we need to figure out ways of doing that, but I know it’s a huge first step and hopefully our charities will start doing a lot more on awareness of these things.
 
IME NHS dieticians have been a totally, absolutely, useless waste of space, food, money and air.

I asked to be referred to one several years ago, for advice on how to combat my crash food preferences - for times where even a sandwich is too complicated to organise. This is a problem as I am also diabetic, to the degree that even on meds (which tend to get forgotten about when crashed) even 2 slices of bread eaten at the same time can cause a significant BG spike. Fortunately, when crashed I have no idea of the effect of a tub of ice cream followed by a packet of hob nob style biscuits is - as during such periods I am not able to drive a BG meter - but it's probably not 'good'.

I informed her that in such times I tended to live off nuts, ice cream, biscuits - simple open a packet and eat foods (often not that simple when crashed) - as anything else was/is too complicated.

The letter she sent to my GP said that she had advised me to avoid nuts, ice cream, and biscuits.

She didn't, I went there for help - I told her the problem, and all she does is send a letter to my GP basically saying exactly what I told her, but claiming it as her own work, as a solution she came up with - I know there is a word for that - maybe plagiarism.

No actual advice on how to deal with my diet when in a crashed state has been forthcoming, at any point, from any member of staff of the NHS.

Ever.
 
We have not had direct experience of a dietician , but I don't have much confidence based on relatives experiences.

Dietician input for cancer seemed to demonstrate a complete lack.of understanding re how cancer proliferated and the complete exhaustion chemo induces ( my cousin was single and lived alone) . It was as useful as a chocolate radiator and another cousin who is a biochemist was shocked. Family and friends rallied around to ensure prepared options were available.


Dietician input for Parkinsons where weight loss was an issue recommended increasing sugar intake and failed to give guidance on timing of fortified protein drinks ( have to be timed relative to certain meds so as not to interfere with absorption)

Dietician input for type 2 diabetes seemed to be unaware that Diet provided potential to reverse this .As long as you cut back on the chicken nuggets and chips and did some stuff from scratch that seemed to be enough to tick the box and move on.

There seems to be a lack of awareness of the effects of medications on vitamin and mineral availability and how dietician can be a useful tool to ameliorate this.

I would love to be wrong .
 
Amw66 said:
These are all in past 4 years.

The Parkinsons was this year. The sugar aspect surprised as ketogenic has some evidence of reducing symptoms as did an almost complete reliance on dairy for nutritional density . There are some suggestions that dairy is not necessarily a good thing for Parkinson's

I have a friend who had health issues for years which were eventually helped by a nutritionist. Her life has been turned around to the extent that she took redundancy and has retrained as a nutritional therapist herself and treats primarily through diet rather than supplements ( unless needed) . Her knowledge on cofactors, processes etc is impressive and she is very switched on re drug interactions.
Her experience previously of dieticians when dealing with relatives was similar to mine. Here at least there seems to be a large knowledge gap. Hopefully this is a local rather than general issue.
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I might be ahead of the curve as my mother among other things work with supervising home care for people with parkinsons :)

I wish we had more cell biology and biochemistry in nutrition studies. At bachelors level in Norway there is one intro course in each, and an intro ourse in microbiology. We also had a very small course (5 ECTS) that included immunology, pharmacology and microbiology. As you can imagine that won't cover much. Happy to have an additional degree in biomedicine with more cell biology, microbiology, immunolgy, gene regulation ++ :) That said, in the case of parkinsons we did go through this last year at masters level, although not very detailed.
 
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