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

Spoonseeker has written a good blog summing up what is happening with NICE guidelines, including quoting @Jonathan Edwards from this thread. There's one point he highlights which makes my heart sink:
An important PS:

The Royal College of Physicians will be heavily involved in the development of the new guidelines through their National Guidelines Centre. It is interesting to look at this Royal College’s contribution to last year’s Stakeholder Consultation exercise, which included the following (on page 89):

“The guideline could be improved for primary care with more focus on the mental health aspects, which are hardly mentioned. The model is very bio-medical and should be amended to give more weight to the psychological and social elements.”

This does not fill me with joyous anticipation of the new guidelines. If anyone has the head for it, it may be worth looking closely at how much power the RCP’s role in the revision process will give them.
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https://spoonseeker.com/
 
Trish said:
Spoonseeker has written a good blog summing up what is happening with NICE guidelines, including quoting @Jonathan Edwards from this thread. There's one point he highlights which makes my heart sink:


https://spoonseeker.com/
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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 ...
We would like to endorse the responses submitted by the Association of British Neurologists and Royal College of Psychiatrists
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... 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.
 
Barry said:
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?
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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.
 
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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....
 
Jonathan Edwards said:
I wonder if the RCGP response was written by Clare Gerada? It is clearly someone with psychological medicine sympathies.
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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 :-P
 
Dr Neigel Speight commented under @Spoonseeker 's blog:
As a doctor, can I comment on the problem of doctors feeling inadequate when they have no curative treatment to offer
Firstly, there are many other conditions in medicine where this is the case but doctors do not abuse and reject these patients, but continue their Hippocratic duty to care and support. It is only ME that seems to make doctors feel empowered to act in this way
Secondly, there is much that doctors can do for ME patients anyway.
I suggest they provide Sympathy, Support and (in the case of children) Protection.
There is also quite a role for symptomatic treatment, for pain, insomnia etc
In the case of children, liaison with school can be important, and in both children and adults support for benefits can be vital
Finally, actual advice is also of importance (as opposed to attempts to “eradicate negative thoughts” via CBT) In acute onset early ME following a virus infection, early diagnosis is important as it can lead to vital advice not to push one’s child (or oneself) back to school/work too soon
So really there is no justification for doctors to reject ME patients
I can reassure doctors who feel helpless and feel like avoiding patients with ME that if all the above steps are followed they are among the most grateful group of patients one can have
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Justy said:
Yes, i am aware there are currently no known genetics for EDSlll. The guidelines I quoted are up to date clinical guidelines, presumably compiled by many Drs who specialise in this area? they are not made up by wishful; thinking patients.

In terms of 'correct specialists, what i am referring to is a specialist who will rule out other forms of EDS, preferably, where indicated with genetic testing. These kind of decisions, such as affect my fami;y members ( have children with similar issues), shouldn't be judged by a GP, but by a competent specialist. What i was referring to was that i had ha no additional work ups based on my history to exclude other forms of EDS. The main reason for this is my M.E diagnosis and the NICE guidelines which restrict GP's from further investigations specifically.

As you know Julia Newtons team find 30% of us misdiagnosed, with many other dx found. The NICE guidelines need to reflect this need for more rigorous work up of patients with exclusions and common co morbid diagnoses laid out. The situation we have instead is many patients spending a lot of time and money searching for themselves for clues and Drs that can help them. Many of us are misdiagnosed when we have things like EDS, Behcets. Lupus, OI, MS, Lyme disease, MCAS as the primary causes of our illness.
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yep known someone with Behcets for many many years mis dx with me and fitted the canadian and other guidelines too
 
Jonathan Edwards said:
I am working from 2017 guidelines. The only thing new I have seen is the paper Esther12 found which suggests that if there is any link between hypermobility and pain it is pretty slight.

I am happy if EDSIII has been abandoned but what is there instead?

mr edwards i am sorrry i am new to forums like this. so i may make mistakes in navigation and posting. sorry for any confusion on my part. please feel free to advise me if i get it wrong. hope these links are useful to you and others

julia newtons paper http://www.rcpe.ac.uk/journal/issue/journal_40_4/newton.pdf

snip
40%) of referrals were eventually diagnosed with other conditions which could explain the concatenation of symptoms. The main alternative diagnoses in these patients were fatigue associated with a chronic disease (47% of all alternative diagnoses); a primary sleep disorder (20%); psychological/psychiatric illnesses (15%, most commonly, depression, anxiety and post-traumatic stress disorder); and cardiovascular disorders (4%).

which is from the very useful article from me research uk which cites two papers on misdiagnosis. they are not perfect but useful start and somethingn we need to call for in our talks with the nice people.

http://www.meresearch.org.uk/information/publications/misdiagnosis-on-a-grand-scale/

snip from second paper link in article

Its major finding was that a diagnosis of “CFS” was eventually confirmed in only 54% of patients. Of the rest, 53 patients (21%) were given alternative medical diagnoses (most commonly primary sleep disorders, endocrine disorders, nutritional disorders and pain disorders), while 54 patients (22%) received alternative psychiatric diagnoses (most commonly a depressive illness or anxiety disorder)

contact lara bloom who is a patient who is working international level with drs patients or perhaps you would be interested in this conferece

https://www.ehlers-danlos.com/2018-european-conference/ dr grahem does not seem to be there though

genetic research heds project research here seems still recruiting i think
https://www.ehlers-danlos.com/heds-gene-project/

i think this page is useful for you and others re the whole eds new nosology

lots of info to read https://www.ehlers-danlos.com/2017-eds-international-classification/

this site i find is very useful for patients and as a patient they do very well in trying to keep up with the new nosology and the research from a patient perspective. though i am not well enough to really pick up the right pages. however this is a start

http://ohtwist.com/eds-resources

its interesting to me the cases of fibro may cross over or be misdiagnosis of eds. with many pwme having a fibro and me dx this is an area of interest. sme links at the bottom of page.

stars charity has lots of very good info and support relevant to eds pwme oi pots
http://www.heartrhythmalliance.org/stars/uk/

pots uk
http://www.potsuk.org/
great charity lots of helpful info and a great facebook page too for support

nhs page on pots cites its common amongst pwme or cfs as they state quite a useful page cites pots uk
https://www.nhs.uk/conditions/postural-tachycardia-syndrome/

the other one we really need to look at is the vit deficiencies from vit d through to b12. many patients get missed with pa. it may be the link with pwme is the gut but a lot are just pa or b12 def. thats another topic i believe though on misdiagnosis
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Jonathan Edwards said:
I agree with Julia Newton that many people diagnosed with ME may be misdiagnosed but I do not see EDS as likely to be relevant.
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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 see the new guideline is now formally identified as CG869 at https://www.nice.org.uk/guidance/indevelopment/gid-ng10091:

upload_2018-1-24_9-52-5.png

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.
 
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Moderator note:
I am in the process of splitting off the EDS discussion as it has progressed beyond a discussion relevant to the NICE Guideline.

Please don't make further posts on EDS here. This thread is about the NICE Guideline and specifically the Stakeholder Engagement Workshop.

Edit: the new thread on EDS is here:
EDS and ME - is there a connection?
https://www.s4me.info/threads/eds-and-me-is-there-a-connection.2074
 
BurnA said:
I think this is a huge issue.
If we are going to stick with evidence then the "something is better than nothing" approach needs to be kicked out.

It would be far better if they offered Nothing and doctors realised that that was the reality, rather than hiding behind non treatments to ease their guilt.

I would prefer a blank page of treatments rather than a dodgy list of half assed treatments.
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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:

The year also held some challenges. Our processes
and recommendations were closely scrutinised in the
High Court when our clinical guideline on chronic
fatigue syndrome/myalgic encephalomyelitis (CFS/
ME) and our technology appraisal of drugs for
osteoporosis were both subject to judicial review. In
each case our guidance was upheld. The judgement
on the CSF/ME guideline fully endorsed the rigorous
way we develop our clinical guidelines. For the
appraisal, in response to the Court’s request, we
reached agreement on partial release of previously
confidential information held by a third party.

Our processes are robust because we’ve spent
10 years developing them. [?!] This year alone, we’ve
sought the opinions of our stakeholders and the
public on updated process and methods guides to
all of our guidance programmes.
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https://www.nice.org.uk/Media/Defau...l-Report-2008-09-Vol-1-Review-of-the-year.pdf
 
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