NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

Cinders66 said:
“While entirely understandable, given issues with the PACE trial and the unhelpful responses from scientists involved in, I do not think it is realistic to accurately judge anyone’s commitment to upholding the Nolan principles (to which all committee members are required to adhere) based solely on selected information found online, anecdotal accounts, and their apparent working relationships with other professionals.

“Instead, I think it would be helpful to understand more about the current views and recent experiences of every committee appointment, and their relationship with people living with M.E. My team and I will be contacting them to ask if they would be willing to share this with us – and you, via our website and social media channels.”
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I think it is extremely important to judge everyone's commitment to upholding the Nolan principles, based on the information available. AfME seems to be suggesting that we should ignore all the information available (dismissed as "selected information found online, anecdotal accounts, and their apparent working relationships with other professionals") and instead just ask them and take their word for it. I'm not convinced that's the best approach myself (this sentence has been edited multiple times to comply with forum rules on obscene language and cussing).

Patients may use emotive language or employ dramatic metaphors when describing their symptoms (e.g. ‘I feel as if I am being stabbed by a red-hot poker’).
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This puts a patient who has just been stabbed by a red-hot poker and is seeking medical assistance in a bit of a catch-22 position. Edward II can be glad that he isn't alive today, because in addition to having a red-hot poker shoved up his ... , he would have to suffer the indignity of being treated with the contempt usually reserved for ME sufferers when he went to his doctor.

rvallee said:
The substance of what they say isn't important now, but with hindsight it will be a huge record of massive, even malicious, incompetence and fraud.
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We've been waiting for hindsight for over 30 years. I'm not a big fan of the just-world hypothesis myself.

The just-world hypothesis or just-world fallacy is the cognitive bias (or assumption) that a person's actions are inherently inclined to bring morally fair and fitting consequences to that person, to the end of all noble actions being eventually rewarded and all evil actions eventually punished.
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https://en.wikipedia.org/wiki/Just-world_hypothesis

There are a number of other scenarios which are just as likely, including that we all have to put up with this shit for a considerable time longer, and that the perpetrators retire on large pensions complaining that nobody really understood them properly or read the studies, or that they were using the best available evidence at the time. How many of those responsible for treating asthma, autism, stomach ulcers and MS psychologically have been held to account?
 
Someone posted in a comment on Tom Kindlons FB page about his involvement in ongoing research with mus symptoms which would be a coi? - so adding here to keep as much information together as possible :

http://www.isrctn.com/editorial/retrieveFile/6b3d6b51-92b3-4825-89a8-9060bf0da471/35773#page16

I think the best thing to do at the moment is compile a list of facts against each person so that if/when the charities or MPs need information to use then it's ready for them. NICE may not be aware of the COIs so there is no harm in pointing them out in a controlled fashion.
 
Sorry such a lot to read.
I was trying to work out how many on the committee so far have actual experience of seeing housebound severe and very severe ME patients who need home visits or at very best stretcher ambulance.
Edited last sentence to make clearer as no good if they only see them at clinics
 
Forestvon said:
Sorry such a lot to read.
I was trying to work out how many on the committee so far have actual experience of seeing housebound severe and very severe ME patients who need home visits or at very best stretcher ambulance.
Edited last sentence to make clearer as no good if they only see them at clinics
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Susan Watson MAY have... The website for Leeds and York CFS service says they do home visits for the severely affected, but then they say home-rehabilitation and elsewhere say they aim to "help you on a journey towards recovery".

And FITNET NHS says it allows severely ill children to enroll, so Joanne Bond-Kendall MAY have had Skype calls with severe kids.

So yeah, some may have seen severe pwme, but so have other professionals who still have no clue... I wouldn't put much weight in knowing if they have or haven't.
Dunno if you've read Jessica Taylor's book, but professionals who saw her daily were still shockingly oblivious and abusive.
 
Gecko said:
"help you on a journey towards recovery".
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As I read that phrase (knowing who it was coming from) I had the immediate impression that their 'help' would have been along the lines of encouraging someone to 'walk toward the bright light' . . . and whatever metaphoric pearly gates at the end.

Euphemisms and double speak are their tools in trade.
 
MEMarge said:
Is that the same Norma O'Flynn who works at the same GP Surgery as Mrs Wessely?
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I've had a wee look and there do look to be connections between Dr Clare Gerada and Dr Norma Flynn, however that's all we know for sure, we have no evidence of any wrong doing.

http://hurleygroup.co.uk/career-opportunities/doctors/

Hurley GroupLondon's leading provider of GP services

Hurley Group NHS GP Partnership

The Hurley Group is an NHS organisation that runs a number of practices and urgent care centres across London. We have been providing patient-centred care since 1969, working within some of the UK’s most deprived communities. We currently employ over 300 staff compromising of 1/3rd clinical and 2/3rds non-clinical. With a number of practices and unscheduled care sites across London we are able to offer a range of opportunities for GP seeking salaried positions.
.............................

The Hurley Group is one of the UK’s most well-known super practices, and is an earlier adopter of technology including its own online consulting and patient self-triage service. Hurley Group consists of 20 centre, with 100,000 patients, whose seven partners include NHS England director of primary care Dr Arvind Madan and former RCGP chair Dr Clare Gerada.

See here:
http://www.pulsetoday.co.uk/your-pr...e-placed-in-special-measures/20034216.article
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http://hurleygroup.co.uk/category/about/gp-partners/

GP Partners and Medical Directors

Clare Gerada, MBE, FRCP, FRCGPGP Partner
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Dr Norma O'Flynn, Chief Operating Officer at National Guideline Centre at Royal College of Physicians:

https://www.rcplondon.ac.uk/ngc-our-team

And she is Chief Operating Officer for the ME/CFS guidelines, https://www.meassociation.org.uk/2018/05/nice-summary-report-scoping-workshop-30-may-2018/ and am I right in thinking they do the interviews for GDG members?

And she works as a GP at the Hurley Clinic and has done since March 2000:

https://www.nhs.uk/Services/GP/Staff/DefaultView.aspx?id=41451


From Feb 2007 - March 2009 she was Clinical Director at Royal College of GP's:

https://www.researchgate.net/profile/Norma_OFlynn

And https://uk.linkedin.com/in/norma-o-flynn-72b2932b


And off course Dr Clare Gerada was President of RCGP from 2010 - 2013 and previous to that she would have been Vice President etc. etc
 
I very foolishly have just read this entire thread in a single sitting (rather a single lying) and probably should assimilate and reread before commenting.

However, I do feel, whilst making sure we do not not undermine the S4ME members who are also lay committee members and that we do not prematurely compromise our role as a stakeholder, that we should strongly protest the bias/conflict of interests of the professional committee members.

The key issues are their pre existing professional and academic commitments to therapeutic approaches based on unacceptably bad science, which is the very reason for this rewriting of the guidelines in the first place, and their associated conflicts of interest. As soon as there is a final list I believe we should submit a strongly worded protest, listing the committee members known conflicts of interest requesting clarification from NICE how they plan to resolve this situation. Also making it clear this is a public letter and a first step, depending on how they respond.

I accept it is very very hard to create any committee of UK professionals without some bias, but no attempt has been made to even examine this. Also a letter at this stage may not achieve a lot, but in the context of such as the recent comments in Parliament about this, it will reinforce the information in the public domain and help us gauge how NICE plan to manage this disaster.
 
Jonathan Edwards said:
Yes, Charles received a 'thanks but no thanks' letter.
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Given who have places on this biased committee it's not surprising, but it is appalling. I despair of ever getting any decent help from NICE. I'm 70 now, I've been sick for 26 years. I had to stop working when I'd hardly started working again post children - was just beginning to look for full time work after 4 years of part time work. I know that I'm not the only one in this bind, but I AM ANGRY!

Thanks JE for all you do to try help us. I'm not getting at you but at NICE.
 
Peter Trewhitt said:
I accept it is very very hard to create any committee of UK professionals without some bias, but no attempt has been made to even examine this. Also a letter at this stage may not achieve a lot, but in the context of such as the recent comments in Parliament about this, it will reinforce the information in the public domain and help us gauge how NICE plan to manage this disaster.
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I am in a difficult situation here and so may be some of those mentioned in Tom's tweet. It is not that no attempt has been made to examine the problem of bias. It has, but NICE is not a group of people. It is an administrative structure in and out of which people move in response to various situations. Some people who have been involved are very aware of the need to address the issue of bias. Exactly what has determined the outcome so far is hard to say but it may be more cock-up than conspiracy. Or perhaps the right hand not knowing what the left hand is doing. Or various other interpretations.

My thought is that it would be reasonable for a carefully worded response to come from S4ME once the full complement of the committee is known. That need not undermine the role of those committee members who are members here. Nobody voted on to the committee is as a 'S4ME representative'. It is important that I maintain an impartial position in all this - as I have always done, even if it might not seem like that to one or two people. But I agree that the complement of the committee has not turned out to be what was apparently intended by those who agreed to review the guidelines. The reviewing of the guidelines acknowledged that vested interests had clouded the prior situation and that this needed to change.

Put another way I think this is a good opportunity for S4ME to demonstrate its scientific and ethical credentials by making a well reasoned statement.
 
Jonathan Edwards said:
Yes, Charles received a 'thanks but no thanks' letter.
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Thank you.

Does this mean the latest e-mail Andy received didn't hide anything and there are really only two nurses and one dietician still to be added to the committee?

edit: see https://www.s4me.info/threads/nice-...s-now-been-published.6197/page-16#post-116694

Edit 2:
My question is directed at @Russell Fleming whose post I understood as if yesterday it still was not clear whether NICE's answer posted by @Andy contained all relevant information.

Russell Fleming said:
Greetings and apologies for absence, but as Nellie has said above, it's proving very hard balancing work and the demands of M.E.

Dr Shepherd has been adding what comments he can to several threads on our Facebook page.

I am afraid that until we have exhausted negotiations, sorted out whether he will actually be on the guideline committee, and discussed any action with other members of Forward ME; we won't be issuing a formal statement.

Comment from Dr Shepherd yesterday:
QUOTE]
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Barry said:
And yet they accepted a PACE author. Maybe Carol Monaghan can pick on this some time.
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The problem as I see it is that it is right and proper that there should be some rules about who is eligible based on a common sense approach to expertise and yet this seems not to have worked in this context. Since there was a recognised problem with involving psychiatrists it looks as if psychiatrists were not invited. So there had to be invitations to physicians dealing with ME, since they at least would have first hand experience. And political correctness requires that other health care professions were represented. This of course may not be strictly rational, but inclusivity is the flavour of the era. It would have seemed logical to me to include some physicians from other specialities, as more disinterested, but goodness knows who would have volunteered.

With that remit I suspect they had hardly any applicants that fitted the requirements apart from lay members and maybe a few therapists. Clearly they had to re-advertise. I can imagine that hardly any physicians initially applied. In that context if a PACE author applies, on what grounds do you make them ineligible? Doing research in an area is not evidence of a biased view. And the quality of PACE is something that this committee has to decide, not something that is established fact a priori.

Charles and myself and probably the others are not NHS ME physicians. I am not even a registered medical practitioner now. We were ineligible, at least according to the rules as they stood.
 
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