By David Tuller, DrPH
Tuesday, September 17th, was World Patient Safety Day. (I didn’t know that either.) In the UK, more than 200 physicians, nurses and other health care providers and professionals marked the occasion by issuing an appeal—in the form of a letter to Wes Streeting, Secretary of State for Health and Social Care since–about the dire state of care for ME patients within the National Health Service. The letter highlighted in particular the plight of patients with severe ME.
The inquest this summer into the death of Maeve Boothby O’Neill, who died in Exeter three years ago at the age of 27, drew widespread attention to the abysmal situation for such patients at NHS hospitals. The presiding coroner, Deborah Archer, ruled that no individuals were responsible for causing or contributing to Maeve’s death, although she acknowledged that some of the decisions made were concerning. On Friday, September 27th, she will hold a hearing to consider whether to issue a report with recommendations to prevent future deaths.
As a Times article about this week’s letter to Secretary Streeting noted:
“A lack of NHS specialist services was highlighted at the inquest of Maeve Boothby O’Neill, who died in 2021 aged 27. An inquest last month concluded that she died from malnutrition caused by severe ME, with the government acknowledging that Boothby O’Neill ‘fell through the cracks’ and was “repeatedly misunderstood and dismissed” by the NHS.”
Dr Binita Kane, a respiratory physician in Manchester, co-organized the letter with #ThereForME, a campaign launched by carers for patients with severe ME associated with Long Covid. Dr Kane posted a thread about the letter on X (the former Twitter). The first listed demand is “acknowledgement from the very top of government…that gaps in NHS services for ME are resulting in serious patient safety concerns” and a commitment “to taking action.”
I have posted the full letter below, along with all the signatories. (I haven’t counted them, but the article in The Times says there are 202.)
**********
Dear Secretary of State,
We write to you on World Patient Safety Day to express our concerns about the safety of patients with Myalgic Encephalomyelitis (ME) within the NHS.
In August over 2,600 patients and carers affected by ME and Long Covid wrote to you, sharing recommendations from the #ThereForME campaign. The Department of Health and Social Care has thus far declined to meet with the campaign. On World Patient Safety Day, we – as healthcare workers – call on you to listen to their voices and take immediate action.
The theme for this year’s World Patient Safety Day is ‘Improving diagnosis for patient safety’, using the slogan ‘Get it right, make it safe’. Devastatingly, for patients with ME this simply is not true. There is little access to truly specialist ME care or treatment within the NHS and paradoxically, the sicker a patient is, the less care they receive.
The number of people affected by ME has grown vastly since the start of the pandemic. Although the data is difficult to disentangle, by some estimates as many as half of patients with Long Covid could meet the diagnostic criteria for ME and face the same gaps in NHS care. Even if doctors and healthcare professionals are knowledgeable and willing to treat patients, the infrastructure to provide safe and appropriate care does not exist.
Like all patients, people with ME deserve safe care within the NHS.
Patients at the severe end of the disease spectrum are bedridden, sometimes tube-fed and confined to quiet, darkened rooms due to extreme light and sound sensitivity. Hospital appointments or admissions often become impossible or make the condition worse. In the most extreme cases, patients languish behind closed doors with little or no support. Some – including high-profile cases in the media – have even starved to death.
This is a state of affairs barely conceivable in the UK in 2024.
The new cross-government delivery plan is a welcome opportunity to put patient safety at the heart of NHS care – but it will be months before the plan is published and perhaps years before it is implemented. Urgent action is needed today.
On World Patient Safety Day we call on you to:
- Acknowledge, from the very top of government, that gaps in NHS services for ME are resulting in serious patient safety concerns, and commit to taking action.
- Work with us to immediately convene an ME Clinical Taskforce to provide emergency specialist guidance in cases where patients are hospitalised, and drive forwards improvements in NHS treatment and care (including managing risks of malnutrition).
- Commit that this government will hold NHS Trusts and Integrated Care Boards accountable for implementing guidance from NICE on diagnosing and managing ME (NG206), recognising that a failure to do so risks unsafe care.
Doing nothing is not safe. We urge you to take action now.
Your sincerely,
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, Cumbria
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
ME services are a failure by the government and the NHS and need to be completely rewritten to provide some support for the thousands of patients that have been neglected for decades
Hmm. There needs to be much more that this I think – an examination by the UK Government of the extent to which the (IMO far less than satisfactory) management of ME has been used as an exemplar for the (IMO far less than satisfactory) management of medically unexplained symptoms (MUS) in order to drive down NHS costs. And an apology would be welcome too.
As a person with ‘classic’ ICC ME dating from over 50 years ago, and whilst very sympathetic wrt those with Long Covid who might also meet the definition of ME (ICC is the *only* criteria that defines ME per se without conjoining the politically dubious moniker of ‘CFS’ and thus the only one which I take be useful and accurate), I am nevertheless concerned that the pre-pandemic ME patients (who might well have very different needs to those who succumbed during the pandemic) are being left behind in this conversation.
As an ‘old-timer’ I’ve kept a gentle eye on reports wrt the presentations of those whose ME was triggered by covid and I’m mindful that lung involvement seems to be a repeating factor (as one might expect from a post viral event after covid). Lung issues such as those discussed within various post-covid forums (I repeat again that because I’m not well enough to make a deep dive, I’m picking up information in an ad hoc way) is something I haven’t seen as being a common denominator in people with ME up until 2020. That is not to say that pwme can’t also be affected and have breathing issues, simply that I think we could be at risk of lumping patients together who are different at a biological level and thus whose needs might be different too.
Anyone who advocates for people with ME must firstly, in my opinion, do so from the point of view of the type of patient that existed before the pandemic … that ought to be the central thrust because that is where the 90 years or so of narrative about this disease lies, not to mention the name of ‘Myalgic Encephalomyelitis’ itself. A post-covid ME epidemic also needs the appropriate advocacy & care it is due, but (and maybe I’m wrong), as a long term patient I’m feeling less and less catered-for…. less and less visible.
If we use Maureen Hanson’s hypothesis (something which she is, I understand, diligently trying to disprove as any good scientist ought to do) whereby enteroviruses are likely the initial trigger (known or occult) which changes the biochemical terrain and downstream viruses are likely those for whom the patient is first aware that their body no longer works as it ought to do so then, of course, any viral assault has the potential to cause ME. (For the record, unless disproved this makes a great deal of sense to me given ME is a disease which primarily affects the neuro and immune systems of the body, and enteroviruses are predisposed to affect those systems).
Thus it would be easy to argue that covid has triggered ME in some people. Should Hanson’s hypothesis be correct (I’m sure someone will tell me if my paraphrasing of that isn’t accurate) I have no problem with LC sufferers being diagnosed with ME provided they really do meet the ICC conditions.
But where symptom patterns are distinct each group might require more specific understanding from both the advocacy and care points of view. In other words any proposed ME Clinical Taskforce should ensure that ‘OG’ ME patients and LC ME patients are catered for in a way that allows for both ‘overlaps’ and ‘distinctive qualities’ in their needs.
As an ME patient for over 30 years, I think it is long overdue to make it safe for ME patients to seek medical care. We have seen how dangerous it is for people who seek care from the NHS and in the US health care system as well as other countries that have minimized the reality of ME. “Doing nothing is not safe” is an understatement. Status quo is unacceptable.
I agree with Lady Shambles about the importance of distinguishing between patient groups. Hanson’s hypothesis makes sense to me. We need research to confirm (or not) this line of inquiry.
I don’t think ME magically stopped when Long COVID came along. We need stratification in research to understand which category patients belong. I’ve heard people with ME who caught COVID indicate their illness patterns changed. If Long COVID and ME were the same, I don’t think ME patients who also have Long COVID would see so much of a difference.
I imagine that classing ME as a ‘functional somatic syndrome’ and to NHS commissioners likely caused a whole lot of harm to ME patients in the UK. While they may not be individually responsible for that, I think it would be really good if UK medics made it clear to the UK Government that UK medicine got this badly wrong.