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NICE announces its next steps in updating its ME guidelines

Countrygirl

Senior Member
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5,427
Location
UK
https://www.nice.org.uk/news/article/nice-announces-next-steps-in-updating-its-guideline-on-me-cfs

15 February 2018

NICE announces next steps in updating its guideline on ME/CFS
A workshop last month with stakeholders marked the formal start of NICE’s collaborative work to update its 2010 guideline on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

The workshop was held so that stakeholders, including patient groups for people with ME/CFS and their carers, could help NICE identify at an early stage the issues they consider most important for the development of the new guideline.

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Over 45 people attended the workshop, representing 37 different organisations supporting people with ME/CFS.

NICE has also confirmed the next steps in the development of the new guideline, starting with a further workshop with stakeholder organisations on 25 May to discuss the scope of the guideline. Stakeholders will then have the opportunity to comment on the draft scope between 21 June and 19 July. This will coincide with recruitment to the independent guideline committee, which will also begin on 21 June with adverts posted on the NICE website.

Professor Mark Baker, director of the NICE centre for guidelines, said: “We wanted to get the views and insights of as many people as possible who are affected, either directly or indirectly, by ME/CFS to make sure we understand the issues that are important to them.

“The clear message from the workshop was the need to ensure the new guideline properly addresses and resolves the continuing debate about the best approach to treating people with this condition. It also confirmed our intention to ensure robust representation of people with ME/CFS, or their carers, on the independent committee that will develop the guideline.

“Therefore, following the scoping workshop we’re holding in May, we will recruit a guideline committee which will include 4 people with the condition or their carers, rather than the usual 2. Additionally, we will include a lay member on the recruitment panel for the chair of the guideline committee.”

Once recruited, the committee will review a wide range of evidence and develop recommendations, based on the agreed scope of the guideline.

ME/CFS is a relatively common condition affecting around 190,000 people in the UK. It comprises a range of symptoms that includes fatigue, headaches, sleep disturbances, difficulty concentrating and muscle pain.

It can cause prolonged illness and disability and although some people have relatively mild symptoms and can still manage daily activities with additional rest, others have a more serious form of the illness that severely affects their everyday lives and can leave them housebound. The pattern of a person’s symptoms, and their severity, can vary from day to day, or even in the same day.

Further details about the development of the new NICE ME/CFS guideline, including the timeline and information about how to get involved, either by sharing your views and experiences of ME/CFS, or by becoming a member of the guideline committee, are available on the NICE website or by emailing CFSME@nice.org.uk

Our public involvement team is also on hand to advise members of the public and patient groups who wish to be involved in this work.
 

andyguitar

Moderator
Messages
6,585
Location
South east England
So is anyone here going to apply to join the Guideline Committee? As far as i know you have to attend meetings about once a month and get paid + travel expences. Who would be a good representative?
 

andyguitar

Moderator
Messages
6,585
Location
South east England
This group (NICE) @shannah, is the body that advises the UK Gov on the best way for our Docs to deal with different illnesses. NICE issue guidelines to the medical profession who are expected to follow them. Could be anything from what drugs should be used to how a diagnosis should be made. Yes they do want to "get it right" but what "right" is depends on your point of view.
 

shannah

Senior Member
Messages
1,429
This group (NICE) @shannah, is the body that advises the UK Gov on the best way for our Docs to deal with different illnesses. NICE issue guidelines to the medical profession who are expected to follow them. Could be anything from what drugs should be used to how a diagnosis should be made. Yes they do want to "get it right" but what "right" is depends on your point of view.


Thanks @andyguitar

I've done a little more reading. I see it all sounded so promising but reality is often a different story.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I wrote an email sharing the kind of diagnosis and care I'm getting here in the US and contrasted it with CBT/GET.

Maybe others could do the same. If they see there are other valid medical options that help patients improve, perhaps CBT/GET won't seem like the only medical treatment.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Got an email back:
Thank you for contacting the National Institute for Health and Care and Excellence (NICE) and sharing your experience with us regarding our developing guideline on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management.

Unfortunately we are able to accept individual pieces of feedback however, we are aware of the concerns that people living with CFS/ME have about the PACE, GET trial and other research. As you are aware, we have begun the process of updating our existing clinical guideline and will therefore be looking at the evidence afresh.

Once the draft document is out for consultation you have the option to comment on the draft recommendations. You can do this by feeding your comments through one of the registered stakeholders the consultation for the draft scope will commence between 21 June – 19 July. The scope will define what the guideline will and won’t cover and to whom they will apply.

I hope this information has answered your question(s).
The registered stakeholder list is:

25% M.E. Group
Action Against Allergy
Action for ME
Action Heart
Alder Hey Children's NHS Foundation Trust
Aquatic Therapy Association of Chartered Physiotherapists
Assocation of NHS Occupational Physicians
Association for Cognitive Analytic Therapy
Association for Family Therapy and Systemic Practice in the UK
Association for Psychoanalytic Psychotherapy in the NHS
Association of Anaesthetists of Great Britain and Ireland
Association of British Neurologists
Association of National Health Occupational Physicians
Association of Paediatric Chartered Physiotherapists
Belfast Health and Social Care Trust
Body Beautiful
BRAME
Bristol and Avon Chinese Women's Group
British Association for CFS/ME
British Association for Community Child Health
British Association for Counselling and Psychotherapy
British Association of Dramatherapists
British Association of Prosthetists & Orthotists
British Association of Sports Rehabilitators and Trainers
British Infection Association
British Liver Trust
British Medical Association
British Medical Journal
British Nuclear Cardiology Society
British Nuclear Medicine Society
British Paediatric Mental Health Group
British Pain Society
British Psychological Society
British Society for Paediatric and Adolescent Rheumatology
Buckinghamshire Healthcare NHS Trust
Cambridge University Hospitals NHS Foundation Trust
Care Quality Commission
Care Right Now
Carers Matter Norfolk
CFS/ME Clinical Network Coordinating Centre
CFS/ME Service for South Yorkshire and North Derbyshire
Chartered Society of Physiotherapy
Chronic Fatigue Research Unit at King's College London
CIS'ters
Cochrane Depression Anxiety and Neurosis Group
College of Mental Health Pharmacy
College of Paramedics
Counselling and Psychotherapy Trust
CWHHE Collaborative CCGs
Department of Health
Department of Health, Social Services and Public Safety - Northern Ireland
DO NOT USE - NHS Direct
DO NOT USE
DO NOT USE Health Protection Agency
Doctors Support Network
East and North Hertfordshire NHS Trust
Eli Lilly and Company
Essex Centre for Neurological Sciences
F.O.R.M.E
Faculty of Pain Medicine of the Royal College of Anaesthetists
False Allegations Support Organisation
Family Nutrition Coach Ltd
Ferring Pharmaceuticals
Forward - ME
GP update / Red Whale
Great Western Hospitals NHS Foundation Trust
Greater Manchester West Mental Health NHS Foundation Trust
Health and Care Professions Council
Health and Social Care Board NI
Healthcare Improvement Scotland
Healthcare Quality Improvement Partnership
Healthwatch Bolton
Hertfordshire Partnership NHS Trust
Hertfordshire Partnership University NHS Foundation Trust
Hindu Council UK
Hope 4 ME & Fibro Northern Ireland
Human Givens Institute
Invest in ME
Isle of Wight Council
Kent and Medway NHS and Social Care Partnership Trust
King's College Hospital - Weston Education Centre
Lancashire Care NHS Foundation Trust
LocalME
London North West Healthcare NHS Trust
London School of Hygiene and Tropical Medicine
Lyme Disease Action
LymeAid UK
M.E Support Northern Ireland
Maidstone and Tunbridge Wells NHS Trust
Manchester Mental Health & Social Care Trust
Mast Cell Action
ME Action Network
ME Research UK
Medicine Gov
Medicines and Healthcare Products Regulatory Agency
ME-Letterforce
MESIG Wales
Ministry of Defence
Moving Minds Ltd
National Guideline Alliance
National Guideline Centre
National Institute for Health Research
National Patient Safety Agency
National Tremor Foundation
NEMS Community Benefit Services Ltd
NHS Choices
NHS Digital
NHS England
NHS Hardwick CCG
NHS Health at Work
NHS Kernow CCG
NHS Oxfordshire CCG
NHS Plus
NHS Sheffield CCG
NHS Somerset CCG
NICE GP Reference panel
Niger Delta University
Norgine Pharmaceuticals Ltd
Northumberland, Tyne & Wear NHS Trust
Nottingham City Council
Nottinghamshire Healthcare NHS Foundation Trust
Nutrition Society
One Click Group
Paediatric Mental Health Association
Pain Concern
Partnerships for Children, Families, Women and Maternity
Pelvic Pain Support Network
PERIGON Healthcare Ltd
Pernicious Anaemia Society
Pituitary Foundation
PoTS UK
Pottergate Centre for Dissociation & Trauma
PrescQIPP NHS Programme
Primary Care Pharmacists Association
Primary Care Rheumatology Society
PRIME Project
Public Health England
Public Health Wales
Quality Institute for Self Management Education and Training
Queen Elizabeth Hospital
reMEmber - The Chronic Fatigue Society
Royal College of General Practitioners
Royal College of Nursing
Royal College of Obstetricians and Gynaecologists
Royal College of Occupational Therapists
Royal College of Paediatrics and Child Health
Royal College of Pathologists
Royal College of Physicians
Royal College of Psychiatrists
Royal College of Psychiatrists in Wales
Royal College of Radiologists
Royal College of Surgeons of England
Royal Cornwall Hospitals NHS Trust
Royal Free London NHS Foundation Trust
Royal Liverpool University Hospital
Royal Pharmaceutical Society
Royal Society of Medicine
S.E.E.N.A
Salford Royal
Salford Royal NHS Foundation Trust
Science for ME
Scottish Intercollegiate Guidelines Network
Sensory Integration Network
Skills for Care
Sky Medical Technology Ltd
Social Care Institute for Excellence
Society for Academic Primary Care
Society for Endocrinology
Society of Homeopaths
Solent NHS Trust
Somerset Foundation NHS Trust
South Asian Health Foundation
Southampton City Council
Stockport NHS Foundation Trust
Stonebird
Support for ME
The Hepatitis C Trust
The M.E. Trust
The ME Association
The ME Association
The National ME Centre
The Princess Alexandra Hospital NHS Trust
The Young ME Sufferers Trust
Thought Field Therapy Foundation UK Ltd
UK Primary Immune-Deficiency Patient Support
United Lincolnshire Hospitals NHS
University College London Hospital NHS Foundation Trust
University Hospital Birmingham NHS Foundation Trust
University of Manchester
Urgo Medical Ltd
VIRAS
Welsh Association of ME & CFS Support -
Welsh Government
Welsh Health Specialised Services Committee
Welsh Scientific Advisory Committee
Wessex Neurological Centre
West London Mental Health NHS Trust
 

Seven7

Seven
Messages
3,444
Location
USA
This is important world wide, so whomever can go to support please go in all of our names.
Also, would be nice if recognized international doctors can go. Not sure if this is the hearing.