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

Just spotted this on ME Research UK's Facebook page.

[The current committee member list can be found on this page, https://www.nice.org.uk/guidance/indevelopment/gid-ng10091/documents. Previously I linked directly to it but NICE keep changing the file name, this way, hopefully, the latest version can be easily found.]

Chair: Peter Barry, Consultant Paediatric Intensivist, University Hospitals of Leicester

Vice Chair: Ilora Finlay, Consultant in Palliative Medicine, Clinical Lead for Palliative Care for Wales, Velindre NHS Trust, Cardiff

Core members / Members
Secondary care paediatrician: Theo Anbu, Consultant general paediatrician and lead for paediatric CFS/ME, Alder Hey Children’s NHS Foundation Trust, Liverpool

Physician with an interest in ME/CFS: Mike Beadsworth

Physiotherapist: Joanne Bond-Kendall

Social worker: Tony Crouch, Social work advisor

Psychologist: Jo Daniels

GP: Luis Nacul

Occupational therapist: Susan Watson, Senior occupational therapist, Leeds and West Yorkshire CFS/ME Service

Lay member: Saran Bonser
Lay member: Sally Burch
Lay member: Nicola Kidby
Lay member: Adam Lowe
Lay member: Dorinda Jack

Still to be filled;
Community paediatrician
Dietician
Epidemiologist
Nurse with specialist interest in ME/CFS
Community children’s nurse

ETA 25/10/18
GP: Chris Burton (Professor of Primary Medical Care, University of Sheffield)
Physician with an interest in ME/CFS: Gabrielle Murphy (Clinical Lead, Fatigue Service, Royal Free London NHS Foundation Trust)
Community paediatrician: Alan Stanton (Consultant Community Paediatrician, University Hospitals Birmingham)
have been added to the list of appointments. although no announcement would seem to have been made.
Discussion of these new appointments can be found, on this same thread, here, https://s4me.info/threads/nice-guid...as-now-been-published.6197/page-6#post-115551

ETA 08/11/18
Changed from linking direct to the file listing the committee members to linking to the webpage that should show the latest version, this should be a more reliable way of finding the latest version.

 

Thanks. Pleased to be included. Glad Nacul and Crouch are involved, and the chair and vice chair seemed very good at the scoping and outreach meetings.

 

I could almost begin to feel hopeful here .

 

Initial information gathering on the professional members. I have tried to find anything that would seem to indicate a BPS, or otherwise, approach.

http://www.eastmidlandscongenitalhe...r-fantastic-teams/intensive-care/peter-barry/

Also known as Baroness Finlay of Llandaff, https://www.parliament.uk/biographies/lords/baroness-finlay-of-llandaff/3609

Unable to find anything worthwhile yet. May also be known as Anbarasu Anbu perhaps?

https://www.researchgate.net/profile/Mike_Beadsworth
An author on this study, https://www.meassociation.org.uk/20...nd-the-medical-research-council-2-april-2015/
Author on conference paper "The role of IP-10 in Chronic Fatigue Syndrome.", https://www.fasebj.org/doi/abs/10.1096/fasebj.31.1_supplement.lb789

Co-author on this paper along with Crawley, https://europepmc.org/articles/pmc5947766

Represents 25% Group and TYMES Trust at Forward ME meetings - think we can trust him

Based at Bath. https://www.researchgate.net/profile/Jo_Daniels2
Author of poster, "Anxiety and depression in Chronic Fatigue Syndrome: prevalence and effect on treatment. A systematic review, meta-analysis and meta-regression" - I've been unable to find it online anywhere.
Author of presentation, "The prevalence and treatment of health anxiety in Chronic Fatigue Syndrome (CFS)", can be read here, https://www.researchgate.net/public...ealth_anxiety_in_Chronic_Fatigue_Syndrome_CFS
Author of article "Anxiety and depression in CFS/ME: the incidence of health anxiety in chronic fatigue syndrome", abstract can be read here, https://www.researchgate.net/public...of_health_anxiety_in_chronic_fatigue_syndrome

Think we can assume we are happy with this appointment.

Can't find anything initially.

 

Sad not to see @Jonathan Edwards on the list.

 

This thread mentions the Leeds clinic: https://www.s4me.info/threads/not-a...psychological-medicine-nicpm.1780/#post-59154

 

I have not received a no. But don't ask further.

 

With a couple of exceptions, the professional members look pretty bad to me. I think we're in for a gruelling fight.

Joanne Bond-Kendall

https://apcp.csp.org.uk/content/joanne-bond-kendall

https://www.csp.org.uk/frontline/article/childrens-pain-we-can-make-it-better

 

@JoanneS points out here, https://www.s4me.info/threads/nice-...-assessment-published.6195/page-2#post-112288, that Jo Daniels was involved with the Shopping Bag trial.

 

This isn't sounding promising. Who do we know to be good? Nacul, obviously...

 

Horrifying!

Tony, Luis, Sally & Adam should all resign under protest that the NICE process is very evidently not fit for purpose.

No sign of any medical practitioner who understands severe ME such as Drs Speight or Weir or any legal oversight for patients such as from Valerie.
A kick in the guts from NICE.

 

Beadsworth is the doctor who first diagnosed me with CFS.
Told me that they don't use the label ME because there is no evidence to support it.
Also told me "don't be afraid of exercise"

I'm sure he's hardcore BPS.

 

"Regulatory capture" often arises from relative apathy on the part of one side to the argument. That could not be the excuse here.

 

Having so many BPS committee members also makes me deeply worried about the chair and vice-chair, assuming they were involved with the selection process.

 

I think the physio could be far worse....

She was at our table for the scoping mtg. She is obviously v pro Crawley and is the one who said that the Magenta results were looking good!

However, she has only been under the Crawley dept since 2015. EC can be very persuasive if you don't know much about ME, plus the lure of publishing could be attractive...

I have some degree of hope that she might be open to reason, when she hears more about PACE gate etc.

At least we don't have a Liaison Psychiatrist in the team.