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

Andy

Andy

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

Andy said:
Chair: Peter Barry, Consultant Paediatric Intensivist, University Hospitals of Leicester
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http://www.eastmidlandscongenitalhe...r-fantastic-teams/intensive-care/peter-barry/

Andy said:
Vice Chair: Ilora Finlay, Consultant in Palliative Medicine, Clinical Lead for Palliative Care for Wales, Velindre NHS Trust, Cardiff
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Also known as Baroness Finlay of Llandaff, https://www.parliament.uk/biographies/lords/baroness-finlay-of-llandaff/3609

Andy said:
Secondary care paediatrician: Theo Anbu, Consultant general paediatrician and lead for paediatric CFS/ME, Alder Hey Children’s NHS Foundation Trust, Liverpool
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Unable to find anything worthwhile yet. May also be known as Anbarasu Anbu perhaps?

Andy said:
Physician with an interest in ME/CFS: Mike Beadsworth
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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

Andy said:
Physiotherapist: Joanne Bond-Kendall
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Co-author on this paper along with Crawley, https://europepmc.org/articles/pmc5947766

Andy said:
Social worker: Tony Crouch, Social work advisor
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Represents 25% Group and TYMES Trust at Forward ME meetings - think we can trust him :)

Andy said:
Psychologist: Jo Daniels
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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

Andy said:
GP: Luis Nacul
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Think we can assume we are happy with this appointment.

Andy said:
Occupational therapist: Susan Watson, Senior occupational therapist, Leeds and West Yorkshire CFS/ME Service
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Can't find anything initially.
 
So we have a baroness as well as a countess now. On the HoL website it says the baroness has an interest in medical ethics.

Jo Daniels was on the panel with Sonya C at the Unrest event in Bath JD floundered and started off talking about CFS and by the end had started saying ME/CFS.
 
Andy said:
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.
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This thread mentions the Leeds clinic: https://www.s4me.info/threads/not-a...psychological-medicine-nicpm.1780/#post-59154
 
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

In 2015 she transferred her skills to work in the specialist paediatric CFS/ME service in Bath providing a clinical service and delivering treatment to participants of the MAGENTA and FITNET research studies; in conjunction with Bristol University and Professor Esther Crawley.
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https://apcp.csp.org.uk/content/joanne-bond-kendall

The children’s CFS/ME service at Royal United Hospitals Bath NHS Trust uses a range of techniques to help patients recover, including activity management, cognitive behaviour therapy and graded exercise therapy. The overall aim being to enable children to manage and control their pain.

‘We don’t promise to eliminate the pain but with specialist support it’s important to try to help the patient reach their goals and regain the social activities they were doing before,’ says specialist paediatric physiotherapist Joanne Bond-Kendall. ‘It’s about acknowledging what they’re feeling and then deciding jointly with the young person and parent or carer what the main problems are and then it’s how you design your treatment programme.’

It seems likely that physiotherapists will increasingly encounter children with CFS. Ms Bond-Kendall is particularly concerned about community physios who may be managing these patients in relative isolation. She urges physios to talk to colleagues and ask for advice where needed. Bath’s CFS/ME service is happy to provide help and support (ruh-tr.paedscfsme@nhs.net).
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https://www.csp.org.uk/frontline/article/childrens-pain-we-can-make-it-better
 
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.
 
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.
 
Esther12 said:
Having some many BPS committee members also makes me deeply worried about the chair and vice-chair, assuming they were involved with the selection process.
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I think it is to be expected that the BPS cult won’t go down without trying to fight for the status quo. the question will be how hard core these individuals are and how much they persist in digging their heels in. I’m relieved there are some people on the committee who will stand up for patients and common sense and I hope that any members who do not have a position will be persuaded that the evidence shows that the status quo is not an acceptable outcome from this process.
 
MEMarge said:
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.
Click to expand...
The issue there is that being open to reason isn’t going to be a good short term career move.....
 
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