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

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Peter Trewhitt said:
It will be quite a lot of work, but would it be worth having a list of deviations/changes in the main guidelines from the November draft, and an idea if they seem to be in response to stakeholder comments prepare for sharing as soon as possible after publication.
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As part of the group I mentioned who wrote our submission, and a committee member, I certainly intend to spend as much time as I can in the next 2 weeks working on studying it in detail. As I said, we haven't clarified yet just how we will do this. We can't really tell how much detailed work will be needed until we read the final version.

I spent so much time on it back in November/December I feel like I have the whole thing seared on my eyeballs! I think those of us who worked on it in line by line detail for our submission will be able to pick up fairly clearly where any changes are.

I'm hoping any substantial changes might actually be highlighted by the guideline committee to help us with our response, but I have no idea whether that will happen.
 
Trish said:
I'll raise this with the committee. At present I'm assuming the small group who wrote our forum submission will read the final version and decide whether to raise any issues. We can't share it with members in general as it is embargoed until publication date.
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If it is going to kick off over the next few weeks, just a reminder about the PEM reanalysis palava. That was not professional at all. They lied to stakeholders about the reason for the delay, and they've done extra work after the draft that may have changed the recommendations.
 
Peter Trewhitt said:
Do we collectively as a stakeholder organisation feel any need to question NICE about Dr Shepherd being stood down, or do we feel like him, that at this stage it would be of little value?
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I personally think at this stage before we see the document, we should be guided by Dr Shepherd's wishes on this. He says he's not going to appeal.

If the guideline turns out to be significantly changed for the worse, that would change things. I'd certainly want there to be strong protests.
 
FYI re NICE new Guideline release!
'It would appear that some patients have been contacted by East Coast Community Health (ECCH). They are interested in the opinions of patients / carers in a review of the new NICE Guidance due later this month and any subsequent ME service redesign.
Discussion to be via email and / or Teams /Zoom.
If you are interested in contributing then you can ring the ECCH community access on 01493 809977. Or ECCH.enquiry@nhs.net. The deadline on the letter was 16th July, but still worth contacting them as they have not yet decided how they are going to proceed with the review.
It would be very interesting to hear feedback from group members regarding this initiative from ECCH.'
 
Trish said:
I personally think at this stage before we see the document, we should be guided by Dr Shepherd's wishes on this. He says he's not going to appeal.

If the guideline turns out to be significantly changed for the worse, that would change things. I'd certainly want there to be strong protests.
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I am disappointed that he isn't going to appeal; from the little I know, the decision seems very unfair.

Dr Shepherd's decision about appealing may not also mean that he does not want organisations to protest the decision. But I can see that it could be a distraction at the time when we may need to be dealing with negative changes in the final guideline.
 
Hutan said:
I am disappointed that he isn't going to appeal; from the little I know, the decision seems very unfair.

Dr Shepherd's decision about appealing may not also mean that he does not want organisations to protest the decision. But I can see that it could be a distraction at the time when we may need to be dealing with negative changes in the final guideline.
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At this point I'm thinking that the timing may make that irrelevant, such an appeal would be a slow process. Which may just have been the point. It probably hints at the politics hinted at by the BPS gang, with the medical associations applying pressure behind the scenes. We're probably just seeing a small glimpse of it, scattershots.
 
Does anyone have any idea what is within the reasonable scope of possibilities for negative changes to the draft?

On a personal note, as a person living with this illness, I often really cannot believe that people are spending their time trying to ensure harmful interventions are imposed on patients - with no warning attached and no regard for their welfare. It is still surreal after all these years that this happening.
 
rvallee said:
At this point I'm thinking that the timing may make that irrelevant, such an appeal would be a slow process. Which may just have been the point. It probably hints at the politics hinted at by the BPS gang, with the medical associations applying pressure behind the scenes. We're probably just seeing a small glimpse of it, scattershots.
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Yup.
The fat lady has not even started singing yet ...
 
Hutan said:
I am disappointed that he isn't going to appeal; from the little I know, the decision seems very unfair.
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I'm not sure I agree. Even if there were time for an appeal, the decision should be allowed to stand. When the final guidelines are published we will see the changes that have been made to the draft and we should also be able to see the representations which have led to those changes. Should it appear that inappropriate weight has been given to particular representations questions might arise as to the process. Corroborative evidence of inequity would be useful. If CS appears to have been treated differently to other members , or, at least, another member, that would appear to be prima facie evidence of bias, potentially.

We should be ready to run with this.
 
chrisb said:
Apologies for keeping on with my random thoughts, but will the removal of CS from the committee mean that he does not get sight of the final version prior to publication? That might impede the ability to make a timely response against all those who will be quick out of the blocks. The nature and extent of embargoes could be important in setting the narrative.
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@chrisb I am sure that the ME Association is the stakeholder, not Dr CS as an individual, so he will get access to view the final (embargoed) version before 18 August.
 
According to the BMJ, four members of the committee have resigned in the past weeks.

https://www.bmj.com/content/374/bmj.n1937

I do not have access to the full article.

ETA:
cassava7 said:
According to @Adam pwme, the following persons have resigned:

Michael Beadsworth, consultant in infectious diseases in Liverpool
Gabrielle Murphy, ex-BACME chair
Joanne Bond-Kendall, senior physiotherapist in a ME/CFS service
Charles Shepherd has been stood down.
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