Feedback from Stakeholder Engagement Workshop for the NICE guidelines on ME, Jan 2018

That will render the severe and very severe as fortunate that they cannot access current treatment protocols from the clinics.
How can abandoned by medical services and left to rot be the preferred option for any guideline.

 

I'm not sure Spoonseeker got that right? That comment was from the RCGP surely. Still worrying of course. And the Royal College of Physicians' response with ...

... is every bit as worrying of course? How can so many intelligent people be so stupid?

 

I agree with @Barry and have just submitted a comment under Spoonseeker's excellent latest blog post also saying I believe it was the RCGP who made that terrible comment he cites in his blog post if I have read the stakeholders' comments correctly in that table provided. Nonetheless, as Barry says the Royal College of Physicians said they endorsed the comments of the Royal College of Psychiatrists and the British Association of neurologists whose submissions were poor and inaccurate and did not want the guidelines updated, so I am still not filled with confidence having the Royal College of Physicians so heavily involved.

 

When I looked it was on the RCP section as Spoonseeker says.

Edit: No, I see, it looks like it but it is actually under the RCGP and RCP is just one sentence on page 88.

This all confirms my suspicions that the new committee is likely to consist of whichever physicians treating ME/CFS can be bothered to get involved - chiefly to fill up their CVs to earn merit award points I suspect. The majority are likely to be people with rather limited critical skills. As far as I can see the only reference under the RCP section is to a paper on hypermobility - which suggests that the contributors are more interested in banging their own drum than saying anything sensible. (Sorry this was also the RCGP bit.)

The sad reality I think is that in the UK ME clinics are often run by people with barmy ideas, mostly along BPS lines, because sensible physicians do not get involved because they realise they have nothing to offer.

Most physicians and GPs who are likely to be recruited will not understand that the CBT and GET studies are unusable. The conversation would go.
'These studies are no good because they are unblinded with subjective outcomes'
'Yes, but it is difficult to do blinded studies so we have to use these.'
'But the fact that it is hard to do better studies does not make bad studies any good. If these were studies of a drug treatment we would not take them seriously.'
'That may be true but we have to go with the evidence that can be gathered. Most of the studies do show some benefit so I think we should continue to recommend the treatments. After all otherwise we will have nothing to justify the service by.'
And on and on with further arguments ending up with the same conclusion - the recommendations should stay.

 

I wonder if the RCGP response was written by Clare Gerada? It is clearly someone with psychological medicine sympathies.

 

I think the focus right now should be symptom treatment while biological research move forward:
Use established treatment for:
Sleep,
OI,
Inmune disregulation tailored to the patient unique needs.
Metabolic abnormalities....

 

It looked like Crawley might have written the pediatrics one, from what I recall ... some grammar errors, and it looked like someone wrote it from a personal perspective then went back and changed instances of "I" to the royal "We". But missed one or two

 

Greg Crowhurst (Stonebird, 25%Group)

http://carersfight.blogspot.co.uk/2017/10/a-reply-from-nice.html

see also: http://carersfight.blogspot.co.uk/2017/09/nice-reply-to-sir-andrew-dillon.html

http://www.stonebird.co.uk/

 

Retaining treatments as the only ones that have any research evidence (SMILE Trial ) could be a dangerous place after Montgomery Vs Lanarkshire Health Board

https://www.supremecourt.uk/cases/docs/uksc-2013-0136-judgment.pdf

Informed Consent requires that any risk of harm that a reasonable person might consider when agreeing treatment.

 

yep known someone with Behcets for many many years mis dx with me and fitted the canadian and other guidelines too

 

I am interested in EDS because of my family history and because I have features myself, possibly enough to be diagnosed with hEDS. I really can't get my head round it currently and it's not my principal concern; the NICE guidelines and their effect on patient care are.

What I was clumsily trying to express before (so clumsily I think it got lost) is that bit bolded in JE's comment above. Justy and Bluesky both referred to it It hink. Once a diagnosis of ME/CFS is suspected from what I hear it can be potluck whether you get much investigation into what might be comorbid conditions or alternative diagnosis. Some doctors are thorough, some aren't. Some doctors it seems just don't want to know. I think this is an area where the BPS lot have done damage.

So I'd like to see the new guidelines include something that's clearer id possible.

 

I absolutely agree that the guidelines should emphasise that regular follow up to look for other diagnoses is one of the most important, if not the most important aspect of care.

 

I see the new guideline is now formally identified as CG869 at https://www.nice.org.uk/guidance/indevelopment/gid-ng10091:



Edit: I realise the title of CG869 is more encouraging also:

"Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management"

ME/CFS, not the BPS-promoted CFS/ME.

Am I getting too optimistic here.

 

Yes I agree with this totally. I am a bit behind reading this thread but just wanted to say amen to that. The "something is better than nothing" have left us with harmful treatments.

 

I was just reading some of their 2009 report. Not sure it's worth posting about, but this from the intro by Michael Rawlins and Andrew Dillon was a bit annoying:

https://www.nice.org.uk/Media/Defau...l-Report-2008-09-Vol-1-Review-of-the-year.pdf