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

Absolutely agree with this.

What we have already with this draft is very impressive - better than most dared hope for in truth. Tweaking to close off serious loopholes seems achievable. Trying to go beyond the realistic in search of perfection would be needlessly very high risk, when the necessary changes are attainable with negligible risk. How could we look at people afterwards it we got it badly wrong, and the final guideline ended up a huge step back from all the good in this draft, because we could not be pragmatic.

 

In my view, the NICE guideline draft makes a lot of useful recommendations and is a step in the right direction.

But there's always room for improvement. I wrote down a critique of the draft, with suggestions on how the document can be further improved. Interested in hearing other people's opinion on this.

https://mecfsskeptic.wordpress.com/...ine-draft-some-things-that-could-be-improved/

https://twitter.com/user/status/1327952859049156610

 

Yes, it is interesting that whenever anyone or any organisation speaks unfavourably of their science, they invariably attack the critic, not the scientific arguments. It seems it is NICE's turn now. Ironic really, given the 2007 guideline was influenced much more by bad eminence-driven "science".

Possibly an own-goal on their part, being how it very usefully amplifies to NICE the very behaviours of theirs we have been speaking of for so long.

 

To be fair, the only people who can decide what is achievable or realistic or not, are the people on the NICE guideline committee, not us. And they are not allowed to write here about their opinions on these topics.

 

I have heard this reference to central sensitisation in pain and maybe fatigue.
Have people had this response widely in clinics?

It will definitely be a good question for the PSP, ie what biomedical evidence is there that PwME have increased sensitivity to peripheral and central sensations.

For me the inflammation of dorsal root ganglia from post -mortem studies gives a physiological explanation for the extreme magnification of touch/smell/sound etc in people with severe ME.

Edit:typo

 

But we shouldn't have to. The difference between the MS guidelines and those for ME/CFS show that they are coming from two very different angles.
MS as a recognised serious incurable neurological illness regardless of severity and ME as this kind of nebulous, 'is it an illness or isn't it' which has so many falsly deeply embedded links to psychiatry that have become part of everything that defines it.

From the way it is classified with mild, moderate and severe, to the definitions of recovery, and the way 'improvement' is measured.
All that seems to be happening is that every time we try to define symptoms in an effort to

they appropriate the terms used and present their own explanation.
This has gone from the use of 'fatigue', to 'PEM' being equated to post-exertional fatigue, 'energy envelope' being used as a new term for 'baseline' to help patients increase activity (GET?) and so on.

In the TWIV discussion recently posted on another thread, David Tuller was trying to explain to his american colleagues about this grip that psychiatry has over ME in the UK and its implications for other chronic illnesses added to the MUS category.

I think this current rewrite of the guidelines should be viewed as 'round one'.

Getting PACE and similar largely excluded from the evidence was huge. But it is still all there available to access and influence, as are its proponents.

Given the current situation re 'long-covid' and the research being carried out and the whole issue of 'post-viral syndromes' being raised I would hope that a recommendation is made that once the new guidelines for ME/CFS are published that
a) all references across the NHS be changed to reflect the changes in the guidelines including the name.
b) all materials, including treatment and training courses also reflect the changes.
c) that ME/CFS be removed from MUS, be officially classified and included under neurology.
d) any new biomedical developments made within the research of 'long-covid' that may be applicable to ME/CFS be replicated with ME/CFS patients.

We have a long way to go.

 

Don't entirely agree. Yes, they can only make final decision, but that decision could go the wrong way if we badly misjudge. There's a gamble involved, because you don't get to make a submission with the option to keep resubmitting if it has the wrong effect. So there is a real decision process in deciding what to submit ... and what not to.

To take two hypothetical (and not for a moment suggesting we actually do!) extremes, which is a useful way of approaching things sometimes.

1. Everyone recommends no changes be made. That would be a dead cert to be acceptable to NICE. Virtually zero risk. Bad idea from our perspective.
2. Everyone recommends the whole thing be scrapped and rewritten from scratch. Total non-starter. Extremely high risk. Even worse idea.

So obviously the viable reality is somewhere in between. Given that so much of what we want is already in the daft, then it makes good sense for our submission to lean much more towards '1' than towards '2'.

 

Well, yes. But no one is asking for it to be rewritten from scratch!

 

Dr Alastair Miller, Deputy Medical Director at the Joint Royal Colleges of Physicians Training Board (JRCPTB)

It is extremely worrying that a doctor with this senior training role for medics is openly contradicting draft NICE recommendations.

Dr Miller and other other key figures still promoting PACE-style therapies MUST be EXCLUDED from any further training for doctors or other healthcare professionals.

 

That's why I said hypothetical. It's just an engineering technique I'm much accustomed to when trying to understand things if they exist on a continuum. Look at the extremes, no matter how outlandish they may be, to help get a better picture of what the full range is, and then home in on what the more realistic range is within that. Sort of a thought experiment to help home in on the reality.

 

I agree with this and have just completed the survey.

My concern is that there doesn’t appear to be any way to verify who is completing the survey – you don’t even have to give your name or email address. This means that people who are neither ME patients nor carers who have a particular agenda could complete the survey and encourage others to do likewise. I don’t know how likely this is, but given the hostility to people with ME and the strong support for CBT/GET among some medical professionals I don’t think it’s inconceivable.

 

Ha as an ex engineer I use this proposition in life. Non engineers jump with shock and think it’s my actual position. It never fails to make me look stupid or irrational. Perhaps that’s why I retired.

 

Yes If I find the time and energy I hope to add concrete suggestions in a format that could be submitted to NICE, with mention of the specific page and line number etc. I'll try to post them in the correct thread here on S4ME.

If anyone wants to comment on things I brought up in my blog, it's best to do so in the relevant thread, as Trish mentioned.

I suppose so, but not sure. Does anyone happen do know if non-UK residents can submit feedback?

@Andy @adambeyoncelowe @Keela Too

 

I think again, we shouldn’t second-guess what is realistic or achievable for the committee, as only they know that. They have not had any input into the discussions on the forum. We actually don’t know if they would add or delete or amend whole sections, if they got enough feedback about it, from enough stakeholders, or thought that the feedback and amendments are important enough to have a new discussion on, even if it’s from just one stakeholder.

I’ll be explicit here. I am concerned that some of many of my points - about keeping people with severe and very severe ME from harm - both in the Hospital Access to Care section 1.8, and in Managing Symptoms 1.11, which are not complete re-writes at all, but significant and important additions / closing of loopholes, are not going to be included in the submission - not because of the fact they don’t have merit, but simply because people on the forum have come to a consensus / second-guessed that the people on the committee will not be willing to even discuss or read anything that seems “too much”, even if it means that sort of thing is needed to keep the severest with ME, safe.

 

Yes, i'm mostly unfamiliar with this process but I wonder where that tipping point is where more feedback becomes less, and worry we might cross it. Maybe it's better to identify the highest yield stuff and pour all our feedback capital behind those.

 

Yes.

 

From https://www.nice.org.uk/process/pmg...86687/chapter/commenting-on-a-draft-guideline, it says simply

In the information that I have read from NICE about stakeholders and/or who can comment, I've not seen anything that limits submissions to residents of the UK. I suspect that stakeholders will be limited to UK based organisations or similar, if I remember correctly S4ME were eligible both because many of our members are from the UK, but I've not seen anything that confirms that.

 

Thanks Andy