#ThereForME campaign / Building an NHS that’s there for Long Covid and ME

People with meningitis get told this too. With devastating and deadly consequences.

 

Posts moved from
United Kingdom: Cases of people with ME/CFS with severe feeding problems, in the media
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The Times: Patients with severe ME at risk of starvation, doctors say

Nearly 200 health professionals have written to the health secretary saying that patients with the illness are being left to ‘languish behind closed doors’​

I can't read this but probably someone else has access.

 

here’s the Full article
https://archive.is/2024.09.16-23473.../article/1d897c33-9d0d-45f2-8ecd-581eee3652fb

 

Some BBC coverage of this campaign from today as well:

https://www.bbc.co.uk/news/articles/c9dyyn834lwo.amp

A share link for the Times story:

https://www.thetimes.com/article/1d...b?shareToken=3d2f96a919796bf1125905e1ca4dd47f

And the letter they sent:

https://www.thereforme.uk/p/9ee430f4-53b1-4ab5-9e1d-7f2ba3483813?updated=2024-09-16T19:50:57.383Z&free_preview=false

 

The thereforme link and text in the previous reply should be copied and kept somewhere safe so people in the UK looking for ME help from the NHS might find someone who believes in ME patients. It's a long list with names from all over the country.

https://www.thereforme.uk/p/9ee430f4-53b1-4ab5-9e1d-7f2ba3483813?updated=2024-09-16T19:50:57.383Z&free_preview=false

I'm not sure if such links exist for ever, or if they become unavailable after a couple of weeks.

 

Quite a few recognisable names in the list, a number of whom we know have ME/CFS from their previous publications, interviews, social media posts. (I'm still surprised more aren't on this forum.)

 

One jumped out:
"Anna Gregorowki - Consultant Nurse and BACME Chair, London, University College London Hospital".

To my mind the list is another indication of how irrelevant BACME are now; certainly not deserving of being a primary source of information about pwME and ME.

 

Spoiler

Dr Binita Kane - Consultant Respiratory Physician, special interest in ME/ Long COVID, Manchester

Professor Carolyn Chew-Graham OBE - GP Principal and Professor of General Practice Research, Manchester

Dr Anna Porter - NHS GP, North Central London

Dr David Shakespeare - Consultant in Neurological Rehabilitation Medicine, Lancashire, Royal Preston Hospital

Dr Deepak Ravindran - Consultant NHS Pain Medicine, specialist interest in Long COVID, Berkshire

Dr Hollie Francis - GP Partner, Greater Manchester

Professor Amitava Banerjee - Consultant Cardiologist and Professor of Clinical Data Science, London

Dr Michelle Moore - GP Partner, Greater Manchester

Dr Cilla Rosen - GP with extended role in Long Covid, Hampshire

Professor Melvin Lobo - Cardiovascular Physician, Specialist in hypertension and PoTs, London, London Bridge Hospital

Dr Melissa Sargaison - Specialist Physician, Clinical Lead ME/CFS & Fibromyalgia Service, London, Royal London Hospital for Integrated Medicine

Dr Sarah Mason-Whitfield- GP, special interest in Emergency Medicine, London

Dr Helen Miles - GP, Oxfordshire

Professor Sarah Tyson - Physiotherapist and Honorary Professor of Rehabilitation, Manchester

Dr Asad Khan - Consultant Respiratory Physician, Manchester

Dr Ben Marsh - Consultant Neurodisability Paediatrician (retired), Exeter

Dr Abbas Khushnood - Consultant Paediatric Cardiologist, special interest in Long COVID, Newcastle

Dr Rebecca Goody - Consultant Clinical Oncologist, Leeds

Robin McNelis - Clinical Physiotherapist, special interest in Long COVID, Epping Forest

Dr Ben Sinclair - GP and Long Covid Doctor, London

Dr Clare Rayner - Consultant Physician in Occupational Medicine, Society of Occupational Medicine Long Term Illnesses Taskforce, Greater Manchester

Dr William Weir - Consultant in Infectious Disease, special interest in ME, London

Dr Claire Taylor - GP, special interest in Long Covid/ME, Perth, Scotland

Dr Rebekah Holmes - GP, Manchester, Northenden Group Practice

Dr Helen Salisbury - GP, Oxford

Sheryl Randhawa - Registered Nurse. Community Mental Health Nurse, London, Mother/Carer of Hannah who died of severe ME in 2022

Michael Lauchlan - Emergency Care Assistant, East Midlands

Amy Urry - Family and Systemic Psychotherapist, Exeter

Dr Rebecca Williams - GP Registrar with specialist interest in Paediatrics, training on hold due to ill health, West Yorkshire

Dr Rebecca Hall - GP, special interest in ME/Long Covid, Somerset

Dr Linn Järte - Specialist Registrar in anaesthetics, Wales

Julie Taylor - Nurse, special interest in Long Covid, Hull

Angela Tillen - Clinical Phlebotomist, supporting care of community patients with ME, Derby

Edd Tillen - Clinical Phlebotomist, supporting care of community patients with ME, Derby

Dr Clarke Gostelow - Junior Doctor

Dr Nicola Clague-Baker - Physiotherapist and Lecturer with special interest in ME, Liverpool, University of Liverpool, Physios For ME

Dr Michelle Bull - Physiotherapist, special interest in ME, Surrey, Physios For ME

Karen Leslie - Physiotherapist, special interest in ME, Merseyside, Physios For ME

Dr Charles Shepherd - Honorary Medical Advisor to ME Association

Dr Yasmin Levene - Histopathologist, London

Claire Appleton - Paramedic, Harrogate

Dr Eleanor Balmer - Consultant Paediatrician, Manchester

Carla Golding - Registered Nurse and Clinical Governance Advisor, Staffordshire

Aileen Mulligan - Registered Nurse, Belfast

Rachel Potter - Staff Nurse

Mandy Jones - Midwife, East Cheshire

Lorraine Horobin - Registered Nurse, Corporate Clinical Governance Facilitator, Staffordshire

Dr Nigel Speight - Paediatrician, special interest in ME, Durham

Dr Mark Fabrowski - NHS GP, Sussex, Medical Advisor to Long Covid Foundation

Dr Robin Kerr - GP, Scotland, Action For ME

Dr Katherine Wildon - GP, North West

Dr Joanne Murray - Consultant Clinical Psychologist, Manchester

Sarah Benjamins - Nutritionist, Manchester

Claire Sehinson - Functional Medicine Practitioner, Surrey

Amanda Dench - Paediatric Diabetes Nurse Specialist, East England, East of England Trust

Dr Stephanie de Giorgio - GP, East Kent

Mihai Mihai - Registered Nurse, Exetter

Dr Rageshri Dhairyawan - Consultant in Sexual Health, London

Dr Moira Phillips - Consultant Clinical Psychologist, Glasgow

Matthew Strang - Orthopaedic Surgeon, Bristol

Dr Kate Christie - GP, Surrey

Dr Emma Rivers - GP, Wetherby

Dr Azima Hussain - GP West Yorkshire

Dr Sakander Mahmud - Functional Disability Assessor (DWP), former GP registrar, West Yorkshire

Dr Alexis Gilber - Consultant in Health Protection, Leeds, UKHSA

Dr Sherena Nair - Consultant Elderly Medicine, Leeds, Leeds Teaching Hospitals NHS Trust

Dr Laura Graystone - GP Registrar, North Yorkshire

Dr Pia-Sophie Wool - GP, special interest in Paediatrics, Worcestershire

Dr Rachel Duncan - GP, special interest in Dementia, Sussex

Dr Johanna Theron - Clinical Lead Long Covid, Kent, Kent and Medway ICB

Kerry Davies - Registered Nurse, Cumbria

Dr Susie Harris - Emergency Care Registrar, Wirral

Dr Paul Smith - Consultant Physician, Lancaster

Dr Fayyaz Chaudhri - Community Dermatologist, North Cumbria

Dr Clare McNulty - Consultant Anaesthetist, Scotland

Sharon Garton - Registered Nurse, Derby, University Hospitals of Derby and Burton NHS Foundation Trust

Angela Marsden - Advanced Nurse Practitioner, East Sussex, Supporting Healthcare Heroes

Dr Alison Twycross - Nursing Professor and Deputy Dean (retired), Honorary Associate, Professor, Aylesbury, Supporting Healthcare Heroes, University of Birmingham

Dr Vikki McKeever - GP, special interest in ME/CFS, Leeds and York

Dr Elke Hausmann - GP, Derby

Amy Warbuton - Advanced Clinical Practitioner for Diabetes and Endocrinology, Lancaster, Royal Lancaster Infirmary

Dr Badia Ahmed - Histopathology Speciality Trainee Doctor, London

Dr Sheena Rakhra - GP, London

Gill Armstrong - Nurse Manager (retired), London

Professor Lesley Kavi - GP (retired), Visiting Professor, Warwickshire, Trustee and Chairperson of PoTs UK

Dr Rachel Reaveley - Rehabilitation Consultant, North East

Dr Anam Ahmed - GP and LTFT Obs and Gyne speciality training registrar, South Yorkshire

Dr Clare Rollason - GP, Urgent Care, Lancaster

Dr Andrew Blease - GP, East Kent

Sophie Lewthwaite - Registered Nurse, Cumbria

Deborah Singleton - Nurse specialist Long Covid, Manchester

Dr Yasmin Razak -NHS GP & Educator, London, Golborne Medical Centre

Dr Hannah Georgious - GP, Cheshire

Dr Paulette Ah-Chung - GP (Retired), Essex

Dr Gemma Banham - Consultant Renal Medicine and General Internal Medicine, West Midlands

Dr Nina Muirhead - Consultant Dermatologist, London

Dr Sarah Glynne - GP and Menopause Specialist, London, The Portland Hospital

Dr Paul Glynne - Consultant Physician, special interest in Long COVID, London, ULCH

Dr Ian Barros D'Sa - Consultant Radiologist, Birmingham

Dr Shaun Qureshi - Palliative Medicine Physician, Oxford

Dr Helen Smith - GP, Bedfordshire

Patricia Temple - Staff Nurse NHS

Dr Gareth Price - GP Partner, West Yorkshire

Dr Adelaide Lippold - GP, North Yorkshire

Clare Westwood - Advanced Nurse Practitioner, West Yorkshire, Huddersfield Royal Infirmary

Katie Wade - Advanced Clinical Practitioner, Paediatrics, West Yorkshire, Calderdale Royal Hospital

Leanne Spender - Midwife, North Yorkshire, Harrogate Royal Hospital

Dr Natalie Winfield - GP, Leeds

Ellen Dedus - Children's Community Nurse, West Suffolk, West Suffolk Foundation Trust

Kate MacDougall - Physiotherapist, Bedford

Sally Jennings - Palliative Care Physiotherapist (Retired), Leicester

Dr Timothy Jennings - GP (Retired), Leicestershire

Dr Julia Ward - GP, Dundee

Dr Eleanor Drager - Consultant in Genitourinary Medicine, London

Dr Cara Strachan - GP Locum, East Lothian

Dr Salina Jain-Parmar - GP, North Leeds

Dr Julie McDonald - Consultant Anaesthetist, Aberdeen, Aberdeen Royal Infirmary

Dr Calum McDonald - Consultant Anaesthetist, Aberdeen, Aberdeen Royal Infirmary

Dr Chia Liang - Consultant Geriatrician, London

Dr Rachel Ali - GP, Plymouth

Dr Sara Thompson - GP, Hertfordshire

Dr Amy Small - GP, Sheffield

Dr Catherine Steven - GP Partner, North London

Dr Lakhveer Manku - Consultant Physician, Manchester, Northern Care Alliance

Dr Mary-Ann Bentham - Consultant Paediatric Anaesthetist (Locum), Manchester, Manchester Children's Hospital

Dr Susannah Thompson - GP, North East

Dr Kul Bushan - Consultant Psychiatrist, London

Dr Anna Wylie - GP, Cambridgeshire

Dr Avril Washington - Consultant Paediatrician, London

Alice Martin - Midwife, Suffolk

Dr Angela Stevens-King - GP Partner, Cambridgeshire

Dr Aisha Sarwar - GP, Manchester

Karen Donaldson - Respiratory ACP, Lancashire

Anna Gregorowki - Consultant Nurse and BACME Chair, London, University College London Hospital

Dr Richard Tozer - Consultant Paediatrician and Local lead for ME/CFS, Devon

Dr Kelly Fearnley - Foundation Doctor, Bradford, Bradford Royal Infirmary

Maria Esslinger-Raven - Midwife, Lancashire

Dr Brian Holloway - Consultant Radiologist, London

Dr Wolfgang Water - GP, Bristol

Dr Sarah Jenkins - Consultant Neuroradiologist, Glasgow, NHS Greater Glasgow & Clyde

Dr Mary Zadik - GP, Greater Manchester

Dr Sarah Pocknell - GP (medically retired), London

Jonathon Dunn - Family and Systemic Psychotherapist, West Devon

Debora Tudge - Specialist Public Health Practitioner, Derbyshire

Emma Brown - Specialist Nurse, Cumbria, Dismissed from NHS on grounds of ill health, due to Long Covid

Professor Louise Cummings - Professor of Clinical Linguistics, York, St Johns University, UK

Rachel Jessey - Long Covid Nutritionist, Hampshire

Jessica Wainman-Lefley - Clinical Psychologist, Glasgow

Marina Townend - Specialist Occupational Therapist, Team Lead on ME/CFS and Post-Covid Syndrome services, Malvern Community Hospital

Dr Jonathan Fluxman - GP (retired), London

Dr Rachael Fear - SPT4 Obstetrics and Gynaecology

Sue Luscombe - Registered Dietician, Bedfordshire, Honorary Dietary Adviser ME Association

May Nisbet - Midwife (retired), Scotland, Aryshire and Arran NHS Trust

Dr Sarah Gawthorpe - GP with Special Interest in Dermatology, Southampton

David Martin - Clinical Psychologist, Suffolk

Dr Helen Day - Consultant GP, Yeovil, Ryalls Park Medical Centre

Dr Joanna Kirkcaldy - GP, Devon

Dr Chantal Meystre - NHS Emeritus Palliative Medicine, West Midlands

Dr Sophie Carpinteiro - GP and Genito-urinary Medicine Speciality Doctor, Brighton

Dr Sarah Jordan - Consultant in Acute Medicine and Gastroenterology, Darlington

Dr Alice Poskett - Obstetrics and Gynaecology, West Midlands

Mrs Amy Pearson - Consultant ENT Surgeon, Hull

Dr Sarah Loveridge - Surgical registrar (retired), Essex

Dr Jennifer Gibb - FY2 Doctor, Severn Deanery

Dr Christopher Gibb - GP, North Devon

Dr Rebecca Steed - GP, Nottingham

Dr Francesca Farmer - GP, London

Dr Sammy Syed - GP, Manchester

Dr Sharon Taylor - Psychiatrist, London

Dr Kerry Smith - GP, Chichester

Dr Lindsay Wakeford - GP, Rugby

Dr Angela Wilkinson - Consultant Geriatrician, Fife

Dr Rachel Jones - NHS Consultant, London

Dr Davina Darmamin - Community Paediatrician, Cardiff, Cardiff & Vale University Health Board

Dr Julia Bodle - Consultant in Obstetrics and Gynaecology, Sheffield

Louise Lumb - Healthcare Assistant, Huddersfield, Huddersfield Royal Infirmary

Dr Clare Bolt - Former Consultant Psychiatrist, Hereford

Dr Laura Hobbs - GP, Hampshire

Dr Kaveri Jalundhwala - GP Registrar, Thames Valley

Dr Nathalie MacDermott - Consultant Paediatric Infectious Diseases, Cambridgeshire

Dr James Gill - GP, Assistant Professor Warwick Medical School, Warwickshire

Dr Terry Segal - Consultant adolescent paediatrician, Adolescent Specialties Lead, University College London Hospitals, London

Fiona Mckechnie - Occupational Therapist, ME/CFS Advanced Clinical Practitioner, Bristol

Dr Ella Billson - ST4 anaesthetics, West Yorkshire Deanery, West Yorkshire

Dr Esther Mitchell - GP, Shetland

Dr Alice Leaney - GP, Somerset

Dr Leanne Royle - Consultant Paediatric Radiologist, Sheffield Children’s Hospital, Sheffield,

Dr Angela Rowntree - GP and Occupational Health Practitioner, Oxfordshire

Dr Sophia Williams - CAMHS Psychiatrist (ST6), London

Dr Rosemary Shilling - Consultant Anaesthetist, Midlands

Dr Ian M Frayling - Consultant in Genetic Pathology (retired), Honorary Senior Clinical Research Fellow, Cardiff University, Wales

Lesley Pickering - Specialist Occupational Therapist, North West Fatigue Clinic and Yorkshire ME/CFS Service, Lancashire

Dr Holly Vickers - Consultant Urogynaecologist, Mid Yorkshire Teaching Trust, Yorkshire

Dr Gregory Gibson - Resident Doctor, London

Sue Mangan - Practice Nurse, Primary Care, Greater Manchester

Dr Charlotte Morris - GP, Greater Manchester

Rebecca Matthews - Delivery Suite Coordinator, Harrogate and District Foundation Trust, Harrogate

Dr Leila Hummerstone - GP, Pickering Medical Practice, North Yorkshire

Dr Heather Reid - Paediatric Registrar, Royal London Hospital, London

Dr Tessa Dessain - Anaesthetic Registrar, Bristol

Hannah Ashcroft - Advanced Clinical Lead Practitioner, Leeds Teaching Hospitals, Leeds

Dr Alice Reid - Foundation Year 1 Doctor, Royal Devon and Exeter Hospital, Devon

list of names in spoiler above

 

I wonder how they were able to put together such a long list given, as I understand it, there wasn’t a public call for support?

 

I was pleased to see Professor Lobo's name on it. I haven't seen him but have been seen in his clinic. A highly regarded mainstream doctor with a focus on blood pressure disorders.


"Professor Melvin Lobo is a pioneering cardiovascular physician and clinical hypertension specialist, based in London. He is renowned for his work as a specialist in all forms of blood pressure disorders, and has been involved in a number of key clinical studies of device-based therapies for these conditions. He is an internationally recognised specialist in hypotension (low blood pressure) and highly variable BP disorders and circulatory conditions including PoTS and fainting disorders. His group has been involved in novel treatments (some first in man) to help patients with these diagnoses."

 

Ironic that Chew-Graham has signed it, given her involvement with the FINE trial and her interest in "..anxiety and depression, multiple health conditions, unexplained symptoms..", https://www.keele.ac.uk/medicine/staff/carolynchew-graham/#research-and-scholarship

 

I notice Louise Cummings' name in that list - she published this on language and cognition impairment in Long Covid, which looks like she understands it pretty well. (I especially liked her discussion of how traditional cognitive testing is inadequate to identify these impairments)

https://www.sciencedirect.com/science/article/pii/S2949903823000015

 

Yes, I wonder how many of them are "long covid people", particularly patients or others with a relative with the condition rather than those who have had a long-lasting interest in ME.

 

I also wonder how many are strongly critical of the biopsychosocial viewpoint e.g. with regard to graded activity/exercise/CBT. Possibly best not to assume that based on their signing this particular letter.

 

https://www.youtube.com/watch?v=vRZTZdnHb-0

 

I think there are fairly well established networks through the charities, and no doubt through BACME and the Primary Care BPS community. I think I may have been asked twice to sign this but had my doubts and politely said no thanks.

My concern is that it is very easy to sign this if you have a professional stake in ME/CFS. Of course we want better services for people with ME/CFS. But I have seen this sort of bid before and not liked the result I saw.

Streeting may ask a research assistant to look into it. Do we need more ME services? Better ask the people who do ME services. That would be BACME. We find a senior BACME member only too ready to advise. A multidisciplinary rehabilitation team is essential, not so much the doctors as the therapists. And of course we have to consult patients. They consult patients. Would you like a whole multidisciplinary team of all sorts of people including physios and stuff? Yes please. That's great.

And in terms of following NICE the senior BCME member would say of course that is essential, although, between you and me, I think the Guidelines were not good - much too influenced by patients (I am quoting...).

And if the research assistant also consults an eminent physician interested in ME/CFS or Long Covid they might well say that we should of course not be limited too much by guidelines. Yes, of course multidisciplinary teams are an essential start but there should be scope for exciting new experimental treatments like blood washing.

All credit to the organisers for trying to get support for quality care, but some of the names on the letter might be seen as the problem rather than the solution. The current government has a big focus on Primary Care, so that is the direction they would go in if they respond.

 

Interesting absence of Dr Strain, being the AfME medical adviser and all that..at least I couldn’t see him on the list.