2018: Discussion on the NICE procedure: what to expect next?

"The fundamental mechanics of the ship remained water tight and at no time were the ship or its passengers in peril until it safely docked exactly where it was supposed to."
Really; no patients in peril or harmed...???
A friend wrote today, "I read this ages ago and can't bear to read it again! But a couple of things which struck me again just from this extract:

1) It's odd (but telling?) that he describes it as 'a prosperous voyage' - you wouldn't have thought that 'bringing wealth and success' or 'successful in financial terms' (the first two definitions of prosperous from a quick Google search) was the point of a medical trial would you?

2) I thought the point of a medical trial was to FIND THINGS OUT ie you would NOT KNOW THE DESTINATION at the out set would you (unless you were hell-bent on getting to where you wanted no matter what.....)
 
That corresponds with what Charles Shepherd explained in a talk to the Sheffield ME & Fibromyalgia Group (the Section on NICE starts around minute 42:30). Shepherd said:

“So the guideline group is now being brought together and the next stage is for the guideline group to then meet and then the evidence gathering process will start, so they will review all the published clinical trials […] So next year the group will be meeting - I think these sort of group meet every month or so, and they look at what’s coming in. The evidence is all analyzed by academics to give pointers to what is good quality evidence, poor quality evidence etc. etc. And then the process of writing the guideline starts. That’s what’s done by a professional team at NICE, it’s not actually done by members of the group themselves. And then the drafts are looked at, and then they go back to the stakeholders. […] And then finally […] the aim is to publish the guideline in October 2020.”

So in 2007 the behavioral stuff passed the initial good quality evidence criteria ?

I want to know how many of these meetings dr S is attending.

I see no reason not to lobby on mus and Iapt in the meantime, as the nice thing quietens for official stuff. I also think we should be lobbying on MRCresearch funding who’ve seemingly offered no response to the formal request for specific funding made by CMRC members earlier in the year. We would have much more due caution regarding activities and rehabilitation as we are going to bizarrely see “exercise as treatment “ the main debate once again if we had serious CPET research highlighting our exertion issues going on in uk.
 

I can only skim but the incompetence and indifference are shocking. This was clearly a process that had predetermined conclusions and no evidence would change those.

Legitimate objections were all brushed aside as inconsequential. All objections that were as true in the late 80's when this nonsense began as they are true now. They mostly center around the fact that their conclusions do not match patient experience but in their opinion this is not relevant because they know they are right.

Same as the objections to the PACE trial. Same as the objections to the Cochrane review. Same in every country where this has been tried. Same with every individual study that has been tried.

All evidence is against them. Competent researchers are against them. The overwhelming majority of patients are against them, very likely all of them if we could exclude misdiagnoses. But clearly it is all of this that is wrong and there is nothing even slightly imperfect to their logical fallacies and disastrously unscientific work.

So all the objections we have now were raised in 2006, they made no difference. All those objections are as true today as they were then and it made no difference. They are all recorded for posterity and have remained correct for decades and still it is us who are wrong and people with no personal experience with this disease who are 100% correct and infaillible.

But sure, let's trust the process and wait until it has completed its review, in two freaking years, to comment on how broken and sadistic this all is.
 
I seem to remember that several competent participants were excluded for being suspected to be "attached" to a single perspective.

Double standards, clearly.



As someone pointed out, Jo Daniels was the one who tried to do the shopping bag study. Oh, how we should not miss out on that level of world-class expertise!
 
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The more NICE documents I read, the more I believe that these unknown NGC persons will have a stronger influence on the NICE guideline than the actual Guideline Development Group. The document provided in this post (see below, somebody shared it on a Facebook group) in which the NGC presented itself to ME/CFS stakeholders, indicates that they will “search for evidence, abstract, distil and synthesize.”

But their influence goes much further. Anyone who has taken a look at the minutes of the previous NICE meetings will have noticed that committee members mostly respond to a text that’s already there. I’m now pretty confident that the technical staff (the NGC) writes that text: they draft the guideline. The Guideline Development Group simply comments, gives directions and votes if a particular decision is to be made.
So how can we know how independent these NGC people are, and if they are immune to (or already infected by) the BPS bullshit?
 
So how can we know how independent these NGC people are, and if they are immune to (or already infected by) the BPS bullshit?

I think we met some of these people at the scoping meetings. My impression is that they will tend to believe what they read. But they are well aware that there is discontent amongst the troops out there and that they may need to justify themselves. I don't think they will be attached to any ideology. Those I met seemed to be youngsters in their twenties with no professional healthcare training. They may want to defend their standard procedures but it should not be too difficult to point out where those may be flawed.
 
Royal College of Physicians of London
"We do not believe that an acceptable definition of CFS/ME has been adhered to. For instance, the commonly accepted definition for research and diagnosis is that of Fukuda et al 1994. The consensus group here have presented their own definition, which really describes fatigue for four months in the adult, with one, of a limited number, of other symptoms. This opens up the diagnosis from CFS/ME into a wider remit of fatigue disorders and not what is Generally accepted in medical practice as the heterogeneous group of fatigue conditions known as CFS. […]It also states the therapies of first choice should be CBT or GET. We feel that these are not either/or therapies, but quite different in their total effects and would be additive. The major studies on GET have only been used in ambulant patients who are able to travel, and never in isolation but always with a General management package, including recommendations for lifestyle changes etc. Clinical evidence and patient experience suggests strongly that some patients may be worsened with GET and more emphasis should be stated that it should be used in individuals who are able to sustain regular day to day activities and that appropriate supervision would be required.

"[…] This is managing setbacks: We think this is a potentially dangerous statement, that with increase in CFS/ME symptoms, exercise or physical activity should be maintained if possible to avoid the negative effects of deconditioning. not aware of any clinician who would make this recommendation, except in a very mildly affected patient. There are many reasons for setbacks in CFS, including excess physical activity or stress. If this is the case, and activity levels remain unchanged, the patient is at risk of having a more major or serious relapse."

So in this light, the delay of the NICE guidance draft by recently statements of RCP seems a big contradiction.
 
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