"SEVERE" MYALGIC ENCEPHALOMYELITIS (M.E.) (also known as Enteroviral Encephalomyelitis) INQUIRY REPORT (Revised: Corrected Article)
"SEVERE" M.E. INQUIRY REPORT
atypical poliomyelitis
M.E. - Myalgic Encephalomyelitis
(also known as Enteroviral Encephalomyelitis) / Aseptic Meningitis | Poliomyelitis-like Syndrome
7th August 2026
Edited terminology version
IMPORTANT EDITORIAL NOTE
This document is an edited adaptation of the Severe ME Inquiry Report, dated 7th August 2026, produced by Action for ME and the 25% ME Group.
Throughout this edited version:
M.E. means Myalgic Encephalomyelitis (also known as Enteroviral Encephalomyelitis).
M.E. (also known as Enteroviral Encephalomyelitis) is not treated as synonymous with Chronic Fatigue Syndrome (CFS), ME/CFS or Systemic Exertion Intolerance Disease (SEID).
CFS, ME/CFS and SEID-like diagnostic constructs are treated separately from :
M.E. (also known as Enteroviral Encephalomyelitis).
Where the original report relies upon NICE NG206, the Government's ME/CFS: the final delivery plan, IOM/NAM criteria, ME/CFS research cohorts, CFS research cohorts, or prevalence estimates generated using such criteria, these are identified as evidence concerning those ME/CFS "CFS" diagnostic frameworks and are not automatically attributed to :
M.E. (also known as Enteroviral Encephalomyelitis).
Post-exertional malaise (PEM) is therefore not presented in this edited version as the hallmark or defining feature of M.E. (also known as Enteroviral Encephalomyelitis).
PEM belongs to the contemporary "ME/CFS" diagnostic framework used by NICE and related criteria.
The defining disease terminology used in this edited version is :
Myalgic Encephalomyelitis (also known as Enteroviral Encephalomyelitis).
The original report did not make these distinctions. They are editorial corrections made for this version.
CONTENTS
Foreword - Tessa Munt MP
Report
- Executive Summary
- Key Recommendations
- Introduction
3.1 Definition of Severe and Very Severe M.E. (also known as Enteroviral Encephalomyelitis)
3.2 Action for ME and the 25% ME Group - Purpose of the Inquiry
4.1 Scope
4.2 Aims
4.3 Methodology
4.4 Evidence - Findings
5.1 Key themes
5.2 Health and Clinical Care
5.3 Social Care and Support
5.4 Children and Young People - Analysis and Discussion
6.1 Clinical recognition without implementation
6.2 Health inequality: The more ill you become, the less care you receive
6.3 Failures in nutritional care can have life-threatening consequences
6.4 Reasonable adjustments remain the exception rather than the norm
6.5 People with severe M.E. (also known as Enteroviral Encephalomyelitis) should benefit from the Government's vision for a National Care Service
6.6 Children with severe and very severe M.E. (also known as Enteroviral Encephalomyelitis) are often not provided with a suitable education that considers their health needs
6.7 Safeguarding processes are being employed inappropriately - Policy Recommendations
7.1 Establish a national framework for severe and very severe M.E. (also known as Enteroviral Encephalomyelitis)
7.2 Ensure timely access to safe, life-sustaining healthcare
7.3 Improve professional knowledge and prevent avoidable harm
7.4 Protect patients and families from inappropriate safeguarding interventions
7.5 Improve support for children and young people
7.6 Strengthen leadership, accountability and data
7.7 Accelerate research and innovation
References
FOREWORD - TESSA MUNT MP
It is both an honour and a grave responsibility to introduce this report, which gives voice to a group of people whose suffering is too often unseen, unheard, and insufficiently understood. Sadly, for a few, it results in loss of life.
This inquiry set out to examine the experiences of people living with severe and very severe Myalgic Encephalomyelitis (M.E., also known as Enteroviral Encephalomyelitis) - individuals whose lives are profoundly constrained by a complex, debilitating, and at times life-threatening condition.
The evidence received was compelling, consistent, and deeply troubling. It paints a picture not simply of unmet need, but of systemic failure.
People described in the inquiry as having severe and very severe M.E. (also known as Enteroviral Encephalomyelitis) are among those with the worst quality of life in our society.
Many are confined to darkened rooms, unable to tolerate light, sound, touch, or even the basic exertions required to communicate or manage food and water.
Yet despite this extraordinary level of need, they are too often excluded from the very systems designed to support them.
Healthcare services do not accommodate the specific needs of those described as having severe and very severe M.E. (also known as Enteroviral Encephalomyelitis), to the extent that trying to use these services may be harmful, making them effectively inaccessible.
Social care is insufficient and inflexible. Education systems struggle to respond appropriately. Across all sectors, a lack of knowledge and understanding continues to drive stigma, disbelief and, in some cases, decisions that actively harm.
What struck me most forcefully throughout this inquiry was the stark injustice at its heart: those who are the most seriously ill are often the least able to access care.
Instead, the burden falls - unseen and unsupported - on family carers, many of whom are providing complex and highly skilled care under immense pressure, without training, guidance or respite.
Equally concerning is the evidence of institutional prejudice and misunderstanding.
Too many people described as having severe M.E. (also known as Enteroviral Encephalomyelitis) report that their illness is doubted, their symptoms dismissed, or their needs misinterpreted.
In the most distressing cases, this has led to inappropriate safeguarding interventions, including allegations of fabricated or induced illness in children. Such actions can have devastating consequences for families already coping with extreme illness.
This report does not seek to rehearse problems that are already well documented without also setting out a clear path forward.
The recommendations presented here centre on one overriding principle: people with severe and very severe M.E. (also known as Enteroviral Encephalomyelitis) must be able to access safe, appropriate and compassionate care - care that recognises the reality of their condition and is designed around their needs, not around the limitations of existing systems.
It is important to acknowledge that this inquiry was not concluded within a single parliamentary cycle.
However, the contributions made by individuals with lived experience, carers, clinicians and professionals were too important to be lost.
This report, brought forward by Action for ME and the 25% ME Group, ensures that their voices continue to inform and shape the work ahead.
There is an urgency to this issue that cannot be overstated.
The evidence presented here shows that current failures are not benign - they have serious, sometimes life-threatening consequences.
Delay is not a neutral act.
Without decisive and coordinated action, people with severe and very severe M.E. (also known as Enteroviral Encephalomyelitis) will continue to suffer unnecessarily.
As Chair of the APPG on ME, I urge Government, the NHS, Integrated Care Boards (ICBs), local authorities and all relevant bodies to act on these findings with the seriousness they demand.
Change is both necessary and possible.
The question is no longer whether we understand the problem - but whether we are willing to respond.
We owe it to those living with severe and very severe M.E. (also known as Enteroviral Encephalomyelitis), to their families, and indeed to our country, to ensure that this report marks not another missed opportunity, but a turning point.
Tessa Munt MP
Chair, All-Party Parliamentary Group on ME
7th August 2026
REPORT
1. EXECUTIVE SUMMARY
This report presents the findings of an inquiry initially started by the All-Party Parliamentary Group (APPG) on ME into the experiences of people described as living with severe and very severe M.E.
For the purposes of this corrected version, M.E. means Myalgic Encephalomyelitis (also known as Enteroviral Encephalomyelitis) and is not used as another name for CFS, ME/CFS or SEID.
Due to changes following elections, the inquiry was not concluded by the APPG.
The inquiry was supported by Action for ME and the 25% ME Group and drew on evidence from people with lived experience, family carers, clinicians, and professionals across health and social care.
This report is a joint report by the two charities to ensure that the effort taken in providing evidence was not lost.
People described as having severe and very severe M.E. (also known as Enteroviral Encephalomyelitis) experience profound, life-limiting disability yet face systemic failure across healthcare, social care and education.
Evidence to the inquiry reveals that services are fragmented, frequently inaccessible and, in some cases, unsafe.
A lack of understanding contributes to stigma, disbelief and harmful decision-making, resulting in avoidable deterioration, delayed treatment and, in extreme cases, life-threatening consequences.
The inquiry identifies consistent and overlapping failures across systems:
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Healthcare services are not designed for people who cannot tolerate standard environments or processes because of their symptoms, leaving many unable to access essential care.
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Social care provision is inadequate and inflexible, failing to meet basic needs and placing unsustainable pressure on family carers.
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Children and young people face delayed diagnosis, disbelief and inappropriate safeguarding responses, including wrongful allegations of fabricated or induced illness.
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Professional knowledge and training remain insufficient, driving poor and sometimes unsafe care.
As a result, people described as having severe and very severe M.E. (also known as Enteroviral Encephalomyelitis) are exposed to a postcode lottery of provision, with outcomes dependent on geography rather than need.
In the absence of appropriate systems, family carers are forced to provide complex, high-risk care without adequate support or guidance.
The report concludes that the current system is not only failing to meet need but is, in some cases, causing harm.
2. KEY RECOMMENDATIONS
Immediate patient safety actions - within six months
These actions are needed urgently to prevent avoidable harm and improve the safety of people with severe and very severe M.E. (also known as Enteroviral Encephalomyelitis) while wider reforms are implemented.
1. Ensure urgent and equitable access to life-sustaining care
Introduce national standards for rapid access to nutritional support, specialist input and hospital care where needed, with clear red-flag criteria.
2. Establish a national framework for severe and very severe M.E. (also known as Enteroviral Encephalomyelitis)
Develop and implement a nationally mandated service model, including a clear service specification and referral pathway, specialist provision and community-care standards.
3. Protect patients and families from inappropriate safeguarding interventions
Strengthen statutory safeguarding guidance to prevent manifestations of serious neurological disease being misinterpreted as self-neglect or fabricated and induced illness.
Priority system reforms - within 12 to 24 months
4. Introduce mandatory training across health, social care and education
Require relevant professionals caring for a person with severe or very severe M.E. (also known as Enteroviral Encephalomyelitis) to receive appropriate disease-specific training.
5. Strengthen national leadership, accountability and data
The original report connects this recommendation with implementation and outcomes of the Government's ME/CFS Delivery Plan.
In this corrected version, the ME/CFS Delivery Plan is identified as a separate contemporary ME/CFS policy framework based upon ME/CFS criteria and must not be treated as synonymous with a plan specifically addressing M.E. (also known as Enteroviral Encephalomyelitis).
Data concerning ME/CFS populations likewise cannot automatically be attributed to M.E. (also known as Enteroviral Encephalomyelitis).
6. Improve support for children and young people
Ensure children and young people with severe M.E. (also known as Enteroviral Encephalomyelitis) can access appropriate healthcare and education that is flexible and based on individual clinical need.
7. Accelerate M.E. research and innovation
Recognise severe and very severe M.E. (also known as Enteroviral Encephalomyelitis) as a research and innovation priority supporting disease-specific diagnostics, investigation, treatments and clinical research.
Research based solely upon CFS, ME/CFS or SEID-like diagnostic criteria should be identified as research into those populations and not automatically represented as research into M.E. (also known as Enteroviral Encephalomyelitis).
3. INTRODUCTION
Correction of the original disease definition
The original report states that Myalgic Encephalomyelitis is also referred to as Chronic Fatigue Syndrome or ME/CFS.
That conflation is not retained in this edited version.
M.E. means Myalgic Encephalomyelitis (also known as Enteroviral Encephalomyelitis).
M.E. (also known as Enteroviral Encephalomyelitis) is treated here as distinct from:
- Chronic Fatigue Syndrome (CFS);
- ME/CFS;
- Systemic Exertion Intolerance Disease (SEID); and
- contemporary diagnostic algorithms derived from those constructs.
The original report also states:
“The hallmark feature of M.E. is post-exertional malaise.”
That statement is not retained as the definition of M.E. in this corrected version.
Post-exertional malaise (PEM) is a central diagnostic requirement within contemporary "ME/CFS" criteria, including the framework employed by NICE.
The presence of PEM does not, by itself, establish a diagnosis of M.E. (also known as Enteroviral Encephalomyelitis).
Accordingly, a diagnostic algorithm requiring symptoms such as post-exertional malaise, unrefreshing sleep and cognitive difficulties cannot simply be substituted for diagnosis of the neurological disease M.E. (also known as Enteroviral Encephalomyelitis).
The original report associates activity-induced muscle fatigue, pain, cognitive dysfunction, dysautonomia, poor or unrefreshing sleep and inability to sustain physical and mental activity with what it calls “M.E.”.
These symptoms may occur in severely ill patients, but a symptom cluster derived from an ME/CFS case definition should not itself be represented as establishing M.E. (also known as Enteroviral Encephalomyelitis).
Prevalence correction
The original report states that up to 1.35 million people in the UK live with “M.E. or ME-like symptoms”.
This number should not be represented as the prevalence of M.E. (also known as Enteroviral Encephalomyelitis).
The estimate incorporates research concerning "ME/CFS" and Long COVID, including estimates of people with Long COVID who meet an "ME/CFS" case definition.
Those populations cannot simply be relabelled as having Enteroviral Encephalomyelitis.
Consequently, the original report's subsequent estimate that up to 337,500 people have severe or very severe “M.E.” likewise cannot be assumed to represent the prevalence of severe or very severe M.E. (also known as Enteroviral Encephalomyelitis).
3.1 DEFINITION OF SEVERE AND VERY SEVERE M.E.
M.E. (also known as Enteroviral Encephalomyelitis)
People with severe neurological disease may be bedbound, reliant on round-the-clock care, in significant pain and unable to sit up, wash, dress or feed themselves.
They can face great difficulty speaking and communicating.
Some patients can develop profound difficulty chewing or swallowing and consequently require nutritional and hydration support.
Severe neurological dysfunction can also result in marked sensory intolerance and extreme functional impairment.
However, the NICE definitions reproduced in the original report are definitions of "severe and very severe ME/CFS" under NG206.
They must therefore remain identified as ME/CFS definitions, rather than being silently converted into diagnostic definitions of M.E. (also known as Enteroviral Encephalomyelitis).
NICE states that people classified as having "severe ME/CFS" may be unable to undertake activities for themselves, may have "severe cognitive difficulties", may depend on a wheelchair and may spend most of their time in bed.
NICE describes people classified as having very severe ME/CFS as being in bed all day and dependent upon care, with some unable to swallow and requiring tube feeding.
These are severity descriptions within NICE's ME/CFS framework. They are not, by themselves, diagnostic criteria demonstrating Enteroviral Encephalomyelitis.
3.2 ACTION FOR ME AND THE 25% ME GROUP
Action for ME describes itself as a UK charity supporting people diagnosed under the contemporary umbrella of Myalgic Encephalomyelitis or ME/CFS terminology, providing healthcare services, information and support and funding research.
The 25% ME Group is a national charity focusing on people described as having severe and very severe M.E.
For the purposes of this edited report, use of the abbreviation M.E. means Myalgic Encephalomyelitis (also known as Enteroviral Encephalomyelitis).
Where either organisation uses ME/CFS diagnostic criteria, those populations should be identified separately and should not automatically be assumed to represent disease-specific M.E. populations.
4. PURPOSE OF THE INQUIRY
4.1 Scope
The inquiry sought to identify:
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how people described as affected by severe and very severe M.E. interact and engage with health and social care and other professionals;
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the extent to which public bodies currently consider and respond to their needs and views; and
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ways in which services and support can be strengthened.
In this corrected version, M.E. means M.E. (also known as Enteroviral Encephalomyelitis).
Where the underlying inquiry population was selected using "ME/CFS" or other broader criteria, that limitation should be acknowledged rather than assuming disease-specific ascertainment.
4.2 Aims
The aims included collecting and analysing evidence from stakeholders concerning health and social care, developing recommendations and ensuring that policy decisions are informed by the experiences of severely affected people.
4.3 Methodology
Evidence was collated through:
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a targeted call for evidence;
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evidence sessions;
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written submissions from patients, families and health and social-care professionals;
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review of existing information and data; and
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briefings supplied by Action for ME and the 25% ME Group.
The original methodology specifically includes the Government's 2025 policy paper:
"ME/CFS": the final delivery plan.
This is retained as an ME/CFS policy document.
It is not renamed an M.E. Delivery Plan, because doing so would conceal the distinction between contemporary ME/CFS policy criteria and M.E. (also known as Enteroviral Encephalomyelitis).
4.4 Evidence
The inquiry heard health and clinical-care evidence from Action for ME, the 25% ME Group, people with lived experience, a family carer and NHS clinicians.
It heard social-care evidence from patients, carers and a social worker.
Evidence concerning children and young people was supplied by the charities, a parent and two paediatricians.
The diagnostic ascertainment underlying this evidence should be considered when deciding whether an individual case represents M.E. (also known as Enteroviral Encephalomyelitis), ME/CFS, CFS or another condition.
5. FINDINGS
5.1 KEY THEMES
Inaccessibility of care and lack of accommodations
People with profound neurological disability face major barriers to accessing services.
Hospital transport, waiting, noise, bright lighting and other sensory stimulation may be intolerable to severely affected patients and may contribute to substantial deterioration.
Institutional prejudice as a major barrier to care
People described as having severe and very severe M.E. reported being stigmatised, disbelieved, treated disrespectfully and blamed for their illness.
The evidence presented this as a recurring pattern rather than isolated instances of poor care.
Unsafe care
Severely affected people can be exposed to significant clinical risks when healthcare systems fail to recognise and respond to their physical illness.
Consequences described to the inquiry included deterioration, medical crises and, in some cases, death.
Nutrition was a particularly serious issue.
Severe swallowing difficulties and malnutrition were reported as being overlooked or misinterpreted.
One clinician described two patients experiencing delays in life-preserving nutritional support after being diagnosed incorrectly with eating disorders.
Lack of professional understanding
The inquiry attributed many problems to inadequate professional understanding.
The consequences include inaccessible services, failure to provide reasonable adjustments and avoidable harm.
Disease-specific education should distinguish M.E. (also known as Enteroviral Encephalomyelitis) from symptom-defined CFS, ME/CFS and SEID-like populations rather than perpetuating diagnostic conflation.
Misinterpretation of illness severity as safeguarding risk
Darkened rooms, limited communication, fluctuating capacity and intolerance of touch may be interpreted incorrectly as self-neglect, family obstruction or fabricated and induced illness.
The problem was described as particularly serious for children and young people.
Family carers pushed to the limits
Where services are absent or inaccessible, responsibility falls upon family members.
Caring for a profoundly neurologically impaired person can require complex nursing care, yet family carers frequently receive little guidance or support.
5.2 HEALTH AND CLINICAL CARE
Patchwork service provision
The inquiry found no national model, agreed pathway or detailed operational guidance for the severely affected population it examined.
It reported an absence of dedicated inpatient provision and nationally agreed red-flag criteria.
The original report
treats NICE NG206 as an important framework.
Correction: NICE NG206 is an ME/CFS guideline.
It should not be represented as establishing a disease-specific clinical framework for M.E. (also known as Enteroviral Encephalomyelitis).
If M.E. is to be treated as Enteroviral Encephalomyelitis, a disease-specific pathway requires appropriate neurological and infectious/post-infectious investigation rather than reliance solely upon an ME/CFS diagnosis-of-exclusion framework.
Services vary substantially according to geography.
The result is prolonged unmet need, avoidable deterioration and, in some cases, delays in receiving life-sustaining nutritional support.
Care is inaccessible because NHS services are not designed for this degree of disability
For profoundly affected patients, the question is not merely whether healthcare exists but whether it can be delivered safely.
Travel, waiting, noise and bright lights were reported as capable of provoking significant deterioration.
One specialist occupational therapist described apparently minor events, including prolonged waits for transport and carers wearing perfume, as potentially producing major setbacks.
A woman in her sixties described a Rapid Response nurse refusing to speak quietly during a home visit despite her explaining her illness and citing NICE guidance.
She subsequently did not receive the antibiotics she required and was admitted to hospital.
People with very severe disease are at risk of malnutrition
Nutritional decline was among the clearest examples of unmet need.
Evidence described people becoming unable to chew, swallow, digest or tolerate food while struggling to obtain specialist dietary support or enteral feeding.
One woman reported being admitted with a BMI of 16, severe swallowing difficulty and confirmation that her swallow was unsafe.
Tubefeeding nevertheless did not commence for ten days.
According to her account, feeding began promptly only after MRI/MRA identified a carotid dissection.
The report observes that treatment changed once another recognised physical diagnosis had been established.
Clinicians also described patients being labelled with anorexia nervosa or routed through psychiatric assessment, delaying life-preserving nutrition.
Prejudice and lack of knowledge remain barriers to care
The inquiry described severe disability and complex physical symptoms being reinterpreted too readily as psychological or behavioural.
A family carer reported that many medical professionals had never encountered a patient as profoundly debilitated as her daughter.
The report identifies lack of mandatory professional training as a contributing factor.
Family carers provide specialist nursing care unsupported
A family carer described her daughter as completely bedbound in a darkened room, unable to sit up, having great difficulty communicating and requiring 24-hour care.
Family carers reported learning complex care through personal experience, other carers and trial and error.
Physician-led specialist services
Positive evidence centred upon flexible physician-led services.
One patient described an independent clinic commissioned to provide NHS care whose GP recognised the need for tube feeding and liaised with the hospital.
Good care was described as flexible, low-stimulus and grounded in recognition of serious physical disease.
Virtual appointments, rest breaks and home visits may substantially reduce the physiological burden imposed upon profoundly disabled patients.
5.3 SOCIAL CARE AND SUPPORT
Pacing and continuity are critical to accessible care
The inquiry found that many severely affected people do not receive sufficient care time to meet basic daily needs including eating, drinking, washing and toileting.
Tasks may have to be carefully separated according to the patient's physiological tolerance.
The original report describes this explicitly through the contemporary ME/CFS concept of post-exertional malaise (PEM).
Correction: PEM should not be described as the diagnostic hallmark of M.E. (also known as Enteroviral Encephalomyelitis).
Where a patient has M.E. (also known as Enteroviral Encephalomyelitis), exertion intolerance, muscle fatigability, neurological deterioration or post-exertional worsening should be documented according to the patient's actual neurological manifestations rather than using PEM as proof of the disease diagnosis.
Continuity of care is also essential.
Repeatedly changing carers forces severely impaired patients to explain complex requirements repeatedly and may impose substantial physiological and cognitive demands.
Inadequate care leaves basic needs unmet
Inadequate care was associated with weight loss, malnutrition, dehydration, missed medication, increased isolation and long-term deterioration.
One older woman reported that insufficient care time meant carers could not prepare fresh food.
She relied upon ready meals that she could not tolerate, developed repeated diarrhoea, fell to 34 kg and required hospital tube feeding.
Underfunded and inflexible care packages can therefore represent a patient-safety problem rather than merely an inconvenience.
Clinical need is misperceived as self-neglect
Declining unsuitable care because of pain, hypersensitivity or adverse consequences may be interpreted incorrectly as self-neglect.
Patients described living under the threat of safeguarding referrals.
Lack of disease-specific knowledge
Care may need to be delivered in darkened, quiet environments.
Patients may have limited capacity to communicate and may have profound sensory intolerance.
Without adequate understanding, necessary adjustments can be misinterpreted as unreasonable demands.
Training should distinguish M.E. (also known as Enteroviral Encephalomyelitis) from CFS "ME/CFS" diagnostic constructs rather than treating the labels as interchangeable.
Direct payments
Direct payments can allow patients to recruit small, consistent teams of carers.
However, severely disabled people may be incapable of administering payroll, rotas, interviews and other employer responsibilities.
Administrative assistance may therefore be required.
Family carers carry unsustainable responsibilities
Partners, parents and children frequently compensate for inadequate formal services.
Family carers may train agency staff, coordinate care and fill gaps when commissioned packages fail.
The inquiry heard evidence of substantial physical, emotional and financial strain.
5.4 CHILDREN AND YOUNG PEOPLE
Diagnosis is delayed
Children with profound neurological illness face substantial barriers to diagnosis.
The inquiry heard that many GPs have limited knowledge and specialist provision is scarce.
However, diagnosis must mean diagnosis of the actual disease present.
A child satisfying contemporary ME/CFS criteria should not automatically be described as having M.E. (also known as Enteroviral Encephalomyelitis) without appropriate clinical evidence supporting that diagnosis.
Likewise, serious neurological or infectious disease must not be overlooked because a child satisfies a symptom-based ME/CFS algorithm.
Clinical disbelief
The inquiry reported substantial professional disbelief concerning profoundly ill children.
One paediatrician stated that clinicians encountering severe cases may have never seen one previously and consequently respond with disbelief.
Alternative psychiatric diagnoses may then be proposed and inappropriate investigations or admissions undertaken.
Fabricated and induced illness
The inquiry received disturbing evidence concerning children being viewed through a safeguarding framework.
One mother reported that her son was offered an intensive four-week admission involving graded exercise therapy and physiological input.
After refusing, she reported accusations of fabricated or induced illness, a safeguarding referral, placement of her child on a child-protection plan and proceedings seeking to remove him from her care.
A paediatrician reported having encountered around 200 paediatric cases in which families were threatened with child-protection proceedings.
The evidence suggests that families caring for profoundly neurologically ill children require protection from inappropriate safeguarding allegations.
The most severely affected receive the least support
Limited service resources disproportionately affect children who are housebound or bedbound.
One paediatrician stated that the children with whom services struggled most were those in the severe and very severe group because home support had to be provided across a large geographical area by a small team.
Community care and clinicians prepared to undertake domiciliary visits were proposed as solutions.
Being believed is central to good care
Families repeatedly described disbelief and failure to listen as major problems.
Clinicians should remain open-minded and investigate objective disease processes rather than allowing either psychiatric assumptions or broad ME/CFS labels to prematurely terminate differential diagnosis.
Education
Severely affected children may be unable to attend school, including on a part-time basis.
Flexible alternatives may therefore be necessary.
Attendance requirements should not override serious medical limitations.
6. ANALYSIS AND DISCUSSION
6.1 CLINICAL RECOGNITION WITHOUT IMPLEMENTATION
The original report presents NICE NG206 - Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management - as a national framework for “M.E. care”.
Correction: NG206 is explicitly an ME/CFS guideline.
Its severity categories describe people classified according to the NICE ME/CFS framework.
Those categories may describe profound disability, including housebound and bedbound patients, sensory intolerance, dependence upon carers and tubefeeding.
However, the NICE ME/CFS criteria do not themselves establish a diagnosis of M.E. (also known as Enteroviral Encephalomyelitis).
Consequently, clinical recognition of severe ME/CFS and clinical recognition of M.E. (also known as Enteroviral Encephalomyelitis) must not be assumed to be the same diagnostic process.
The inquiry nevertheless demonstrates an important broader problem: patients with profound physical disability lack nationally coordinated services, trained staff, referral routes and escalation mechanisms.
6.2 HEALTH INEQUALITY: THE MORE ILL YOU BECOME, THE LESS CARE YOU RECEIVE
The report cites Action for ME's 2026 Big Survey and states that:
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almost two-thirds of respondents classified as having severe M.E. and four in five classified as very severe could not access their local service because they were too ill;
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the majority received no ongoing follow-up, monitoring or review; and
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substantial proportions struggled to eat enough to maintain their weight.
Diagnostic qualification: These survey results should be reported according to the diagnostic population actually surveyed.
They should not automatically be converted into epidemiological evidence concerning M.E. (also known as Enteroviral Encephalomyelitis).
The original report then cites the Government's:
ME/CFS: the final delivery plan.
That plan acknowledges inequalities in services for people misclassified as having severe and very severe ME/CFS and discusses possible specialised services.
Correction
The ME/CFS Delivery Plan is an ME/CFS policy framework employing contemporary ME/CFS concepts and NICE criteria.
It should therefore not be represented as a disease-specific M.E. (Enteroviral Encephalomyelitis) Delivery Plan.
Under the terminology adopted in this edited report, M.E. (also known as Enteroviral Encephalomyelitis) is distinguished from the ME/CFS construct addressed by that policy.
Any specialised clinical service intended specifically for M.E. would consequently require appropriate disease-specific diagnostic ascertainment.
6.3 FAILURES IN NUTRITIONAL CARE CAN HAVE LIFE-THREATENING CONSEQUENCES
NICE NG206 recognises nutritional and hydration problems in people classified as having severe or very severe ME/CFS.
It recommends monitoring for malnutrition and dietetic involvement.
Where tubefeeding is necessary, other NICE nutritional-support guidance applies.
The inquiry nevertheless heard evidence of serious delays in initiating tubefeeding and of severely malnourished patients receiving inappropriate psychological diagnoses, without positive evidence of psychopathology.
Whatever the underlying neurological diagnosis, severe dysphagia and malnutrition require appropriate medical investigation and timely treatment.
In patients with M.E. (also known as Enteroviral Encephalomyelitis), swallowing impairment should not simply be reduced to an ME/CFS symptom label; appropriate neurological assessment is required.
6.4 REASONABLE ADJUSTMENTS REMAIN THE EXCEPTION RATHER THAN THE NORM
The Equality Act 2010 imposes duties concerning reasonable adjustments for disabled people.
For profoundly affected patients, adjustments such as virtual appointments, home visits, reduced sensory stimulation, appropriate transport and adequate time between care activities can determine whether healthcare is accessible.
Standard models assume patients can travel, wait, speak, tolerate light, noise and touch and recover rapidly from interactions with services.
Those assumptions may exclude profoundly neurologically impaired patients.
Family carers likewise require appropriate support, assessment, training and respite.
6.5 PEOPLE WITH SEVERE M.E. (ALSO KNOWN AS ENTEROVIRAL ENCEPHALOMYELITIS) SHOULD BENEFIT FROM A NATIONAL CARE SERVICE
A National Care Service based upon person-centred care, prevention, independence, NHS integration and a skilled workforce should include people with profound neurological disability.
People with severe M.E. (also known as Enteroviral Encephalomyelitis) may require highly skilled care.
Staff need to understand the patient's neurological impairment, communication difficulties, sensory abnormalities, nutritional risks, mobility limitations and physiological response to activity.
Family carers should not be forced to substitute indefinitely for properly commissioned professional care.
6.6 CHILDREN WITH SEVERE AND VERY SEVERE M.E. (ALSO KNOWN AS ENTEROVIRAL ENCEPHALOMYELITIS) AND EDUCATION
Department for Education guidance requires suitable education for children unable to attend school because of health needs.
Flexible, home-based, remote or part-time education may therefore be necessary.
The original report specifically identifies post-exertional malaise as a consideration.
Correction
PEM is part of the contemporary ME/CFS diagnostic framework and should not be presented as the defining pathological feature of M.E. (also known as Enteroviral Encephalomyelitis).
For children diagnosed with M.E. (also known as Enteroviral Encephalomyelitis), education should instead be adapted to the child's actual neurological and physiological limitations, including exertion intolerance, muscle fatigability, motor impairment, cognitive dysfunction, sensory intolerance or other documented manifestations where present.
6.7 SAFEGUARDING PROCESSES ARE BEING EMPLOYED INAPPROPRIATELY
The original report relies upon NICE ME/CFS guidance warning that severe symptoms may be confused with abuse or neglect.
That remains relevant to people misdiagnosed under the ME/CFS framework.
For M.E. (also known as Enteroviral Encephalomyelitis), the same fundamental safeguarding principle applies: manifestations of serious neurological disease must not be misinterpreted as evidence of neglect, fabricated illness or parental obstruction without appropriate evidence.
Professional disbelief, delayed diagnosis and failure to understand severe physical disease can trigger inappropriate safeguarding procedures.
The inquiry concluded that existing protections were not consistently preventing such harm.
7. POLICY RECOMMENDATIONS
7.1 ESTABLISH A NATIONAL FRAMEWORK FOR SEVERE AND VERY SEVERE M.E. (ALSO KNOWN AS ENTEROVIRAL ENCEPHALOMYELITIS)
A disease-specific national framework should distinguish M.E. (also known as Enteroviral Encephalomyelitis) from CFS, ME/CFS and SEID-like diagnostic constructs.
It should include:
-
a clear service specification and referral pathway;
-
appropriate specialist medical provision;
-
community and domiciliary care;
-
adequate time for essential care;
-
continuity of carers;
-
staff trained in severe neurological disease;
-
named clinical leadership; and
-
appropriate investigation of neurological, autonomic, swallowing, nutritional and other manifestations according to clinical presentation.
The original report proposes development of a nationally commissioned service pursuant to the ME/CFS Delivery Plan.
Correction
A specialised service commissioned under an ME/CFS Delivery Plan should remain identified as an ME/CFS service unless it introduces separate disease-specific ascertainment for M.E. (also known as Enteroviral Encephalomyelitis).
ME/CFS criteria should not simply be renamed M.E. criteria.
7.2 ENSURE TIMELY ACCESS TO SAFE, LIFE-SUSTAINING HEALTHCARE
People with severe and very severe M.E. (also known as Enteroviral Encephalomyelitis) should have timely access to healthcare.
National standards should include:
-
rapid access to nutritional support;
-
enteral feeding where clinically indicated;
-
clear red-flag criteria;
-
urgent specialist assessment;
-
appropriate investigation of dysphagia and other neurological dysfunction;
-
protection against unsupported psychiatric reinterpretation of serious physical deterioration; and
-
maximum waiting times where malnutrition or medical deterioration creates immediate risk.
7.3 IMPROVE PROFESSIONAL KNOWLEDGE AND PREVENT AVOIDABLE HARM
Healthcare, social-care and educational professionals require appropriate training.
Training concerning M.E. (also known as Enteroviral Encephalomyelitis) should not consist simply of training in NICE ME/CFS criteria.
It should clearly distinguish:
M.E. (Myalgic Encephalomyelitis; also known as Enteroviral Encephalomyelitis)
from:
CFS
ME/CFS
and
SEID-like symptom-based diagnostic constructs.
The original recommendation that training should reflect NICE NG206 and PEM should be identified specifically as ME/CFS training, not disease-specific proof of M.E.
Practical guidance should also cover low-stimulation care, home-based assessment, hospital accommodation and management of profound disability.
7.4 PROTECT PATIENTS AND FAMILIES FROM INAPPROPRIATE SAFEGUARDING INTERVENTIONS
People with severe neurological disease and their families should not face safeguarding investigations merely because professionals misunderstand their medical condition.
Government should:
-
strengthen safeguarding guidance;
-
require appropriate specialist medical advice;
-
prevent serious neurological symptoms from being interpreted automatically as self-neglect, fabricated or induced illness or treatment refusal;
-
require adequate medical differential diagnosis before psychiatric or safeguarding escalation; and
-
establish independent review mechanisms for serious incidents involving inappropriate safeguarding action or avoidable harm.
7.5 IMPROVE SUPPORT FOR CHILDREN AND YOUNG PEOPLE
Children with severe M.E. (also known as Enteroviral Encephalomyelitis) should receive appropriate healthcare and education without being forced beyond their neurological and physiological capacity.
Government should:
-
guarantee flexible, remote or home-based education where necessary;
-
permit temporary withdrawal where clinically required;
-
prevent inappropriate attendance enforcement;
-
base educational planning upon actual functional and neurological capacity; and
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improve professional understanding of serious neurological disease.
7.6 STRENGTHEN LEADERSHIP, ACCOUNTABILITY AND DATA
National leadership should monitor outcomes for severely affected patients.
However, data must be diagnostically stratified.
M.E. (also known as Enteroviral Encephalomyelitis), CFS and ME/CFS should not automatically be pooled into a single epidemiological category if the purpose is to determine disease-specific prevalence, pathology, outcomes, mortality or treatment response.
The original report recommends annual reporting concerning implementation of the ME/CFS Delivery Plan.
That should continue to be described accurately as ME/CFS reporting.
It should not be represented as disease-specific surveillance of M.E. (also known as Enteroviral Encephalomyelitis) unless the population has been independently identified accordingly.
7.7 ACCELERATE RESEARCH AND INNOVATION
M.E. (also known as Enteroviral Encephalomyelitis) should be investigated using disease-specific biomedical research.
Research should seek objective diagnosis, pathology, mechanisms and treatment rather than assuming that fulfilment of CFS, ME/CFS or SEID-like symptom criteria identifies the same disease.
The original report cites major programmes including DecodeME and Sequence ME & Long Covid.
Diagnostic correction
Research programmes recruiting participants through ME/CFS or CFS criteria should be described as research into those selected cohorts.
They cannot automatically be presented as research specifically into M.E. (also known as Enteroviral Encephalomyelitis) unless the research design independently establishes that disease population.
Likewise, Long COVID should not automatically be conflated with M.E. merely because some people with Long COVID satisfy an ME/CFS symptom-based case criteria.
A person satisfying an ME/CFS algorithm has satisfied that algorithm.
That fact alone does not establish Enteroviral Encephalomyelitis.
Disease-specific M.E. research therefore requires disease-specific ascertainment rather than circularly defining M.E. by contemporary ME/CFS criteria and subsequently claiming that an ME/CFS cohort demonstrates the pathology of M.E.
REFERENCES - DIAGNOSTIC QUALIFICATION
The references in the original report should remain cited under their actual titles and diagnostic populations.
They should not be retitled to make CFS or ME/CFS publications appear to concern specifically diagnosed Enteroviral Encephalomyelitis.
Particularly important examples include:
Institute of Medicine, 2015
Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.
This publication concerns the IOM's ME/CFS framework and its proposed replacement terminology, Systemic Exertion Intolerance Disease (SEID).
It should not be used in this edited report as the disease definition of M.E. (also known as Enteroviral Encephalomyelitis).
NICE NG206
Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management.
This is the contemporary NICE ME/CFS clinical guideline.
Its diagnostic framework and severity categories should be identified as ME/CFS criteria rather than automatically relabelled as diagnostic criteria for M.E. (also known as Enteroviral Encephalomyelitis).
Government ME/CFS Delivery Plan
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): the final delivery plan.
This remains an ME/CFS Delivery Plan.
It should not be called an M.E. (Enteroviral Encephalomyelitis) Delivery Plan in this corrected version.
ME/CFS prevalence studies
Studies estimating the prevalence of ME/CFS, CFS/ME or populations satisfying an ME/CFS case definition should remain identified according to those diagnostic populations.
They cannot be used directly to calculate the prevalence of M.E. (also known as Enteroviral Encephalomyelitis).
Long COVID studies
Finding that a proportion of people with Long COVID satisfy an ME/CFS case criteria establishes overlap with that case definition.
It does not establish that the same proportion has M.E. (also known as Enteroviral Encephalomyelitis).
Research programmes
DecodeME and other programmes using broad ME/CFS ascertainment should be described according to the cohorts they actually recruit.
Their findings should not automatically be attributed to M.E. (also known as Enteroviral Encephalomyelitis).
CONCLUDING CORRECTION
The central problem with the terminology of the original Severe ME Inquiry Report is that several different concepts are repeatedly treated as though they were interchangeable:
M.E. (also known as Enteroviral Encephalomyelitis)
CFS
ME/CFS
NICE NG206 ME/CFS
and, through its reliance upon the IOM framework,
SEID-like disease criteria.
In this edited version these categories are separated.
M.E. - Myalgic Encephalomyelitis
Myalgic Encephalomyelitis (M.E.) - also known as Enteroviral Encephalomyelitis.
It is not defined here merely by fatigue, PEM, unrefreshing sleep or cognitive complaints.
PEM is not treated as the hallmark that establishes the diagnosis.
ME/CFS - Chronic Fatigue Syndrome
ME/CFS refers to the contemporary clinical construct used by NICE NG206 and related policy and research programmes.
Material derived from this population remains labelled ME/CFS.
CFS
Chronic Fatigue Syndrome remains a separate misdiagnosis construct and is not used as another name for M.E. (also known as Enteroviral Encephalomyelitis).
SEID Algorithm
Systemic Exertion Intolerance Disease is the diagnostic construct proposed by the US Institute of Medicine in 2015.
It is not another name for M.E. (also known as Enteroviral Encephalomyelitis).
"ME/CFS" DELIVERY PLAN
The Government's ME/CFS Delivery Plan is treated as a plan concerning the contemporary ME/CFS framework.
It is not renamed or represented as a disease-specific plan for Enteroviral Encephalomyelitis.
PEM
Post-exertional malaise is retained where discussing ME/CFS criteria.
It is not used as the defining hallmark or diagnostic proof of M.E. (also known as Enteroviral Encephalomyelitis).
RESEARCH
Research involving people selected using CFS, ME/CFS, NICE or SEID-like criteria should be reported according to the cohort actually studied.
Such a cohort should not automatically be relabelled an M.E. (Enteroviral Encephalomyelitis) cohort.
ACKNOWLEDGEMENTS
The original report acknowledges the people living with severe illness, family carers and health and social-care professionals who participated in the inquiry and submitted evidence.
Many contributors shared deeply personal and distressing experiences at considerable personal cost.
The original report also acknowledges members of the All-Party Parliamentary Group on ME and specifically Carol Monaghan and Jo Platt.
The analysis and drafting of the original report were led by Dr. Katharine Cheston of the Institute for Medical Humanities, Durham University, with support and contributions from colleagues at Action for ME and the 25% ME Group.
This terminology-corrected adaptation is not the original report and should not be attributed to those authors as representing their wording or conclusions.
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MP Tessa Munt, who is Chair of the APPG on ME, has written to the new Minister of Health Innovation, MP James Frith, about M.E. and has identified five initial areas for the Government to address:
- Getting better numbers
- Understanding the economic cost
- Research to develop diagnostics and treatment
- Changing detrimental attitudes, knowledge and practice
- Providing a national specialist service for very severe M.E.
James Frith MP
Parliamentary Under-Secretary of State for Health Innovation
Department of Health and Social Care
London SW1H OEU
Our ref: TM17798
14th August 2026
Dear James,
Myalgic Encephalomyelitis (M.E.)
Congratulations on your appointment as Minister for Health Innovation. As Chair of the APPG on M.E., I understand that M.E., along with other infection associated chronic conditions, falls within your portfolio.
Given the numbers affected, and the length and extent of their suffering, M.E. represents a significant burden to our country at personal level, to society, and to our economy. However, the government's response, the Final Delivery Plan launched in July 2025, is widely seen to lack ambition and the dedicated resources needed to address such a significant issue for so many. As you take office, I hope very much that you will take inspiration from the Prime Minister's vision to bring back hope. There is no doubt that at present we are all paying for the failure over successive governments to acknowledge the needs of all those affected by M.E.. It is time for a fresh start, with investment to address their needs, to enable them to lead healthier lives and make the contributions to our country that they have dreamt of for so long.
M.E. an introduction
M.E. is a “serious, chronic, complex, and multi-system disease that frequently and dramatically limits the activities of affected patients”. I am struck by the numbers affected, the length and extent of suffering, and the multiple ways in which people with M.E. continue to be let down by the State. Indeed, M.E. remains one of the health injustices of our time.
The two UK major charities estimate that 1.35 million people in the UK live with M.E. or M.E.-like symptoms (with 80-85 percent of these being female), nearly 40% more than those living with dementia. NICE recognises that 25% of those with M.E. will be severely affected. Action for ME and the 25% M.E. Group recently published a hard-hitting report into Severe M.E., building upon an APPG on M.E. Inquiry.
To quote from my Foreword to that report:
- Data - getting better numbers
The estimate of 1.35 million living with M.E. is itself the sum of two estimates and so serves only as a useful ballpark figure. However, given its magnitude, it should trigger a move to establishing a better understanding of the scale and demography of M.E. to provide the foundations for better planning and understanding the true economic burden. The use of SNOMED codes within the NHS should provide this information, but there is significant work to be done so that those with M.E. present to GPs and are captured, to ensure consistency of coding for those with M.E., and that data is correctly aggregated. - Understanding the economic cost to the UK
The most recent estimate of the economic burden of M.E. on the UK, dates from 2017 and relies on data from 2014/15. This predates the significant increase in those with M.E. following COVID and doesn't reflect high inflation in the period since. The German studies published in 2025 (and updated in 2026) highlighted the significant contemporary cost of M.E. and Long Covid, providing the basis for government to invest EUR 500 million in research. Given the scale of M.E., and undoubted cost, the UK urgently needs a similar study to inform investment decisions ahead of the next spending round. - Research to develop diagnostics and treatment
With the exception of Germany, across the West, M.E. has one of the lowest levels of investment in research relative to disease burden for any health condition. The UK government is no exception, the Final Delivery Plan had new commitments of only £2.2 million in research funding, followed by £4.75 million for Sequence ME in March 2026. And yet the UK is a world leader in unravelling the genetics of M.E.. This has already confirmed that M.E. is an organic disease and critically points the way to the development of diagnostics and treatment. - Changing detrimental attitudes, knowledge and practice across the NHS
Action for ME's 2025 Big Survey gathered data from more than 5000 people living with ME and/or Long Covid. Initial results painted a bleak picture. When asked to describe their experiences of seeking NHS healthcare for their M.E., more than half said that they had been disbelieved by an NHS healthcare professional. One in three had been made to feel that their M.E. was their own fault, and almost 40% had an encounter with a clinician that was traumatic or traumatising. Sadly, my postbag on M.E. bears this out. The full results, due to be released in September, will describe an NHS that has failed those with M.E. Indeed, many with M.E. actively avoid contact with the NHS because of well- founded patient safety issues, and an awareness that too many languish with inappropriate care.
- Moving at pace to provide a national specialist service for very severe ME
The Final Delivery Plan commitment to explore whether a national specialist service for very severe M.E. should be set up was widely welcomed. There was then consternation across the M.E. community at the news in March 2026 that this exploration was to be paused until April 2027 due to the uncertainties associated with the planned abolition of NHS England and changes to ICBs. It will be critical to this process that a clinical committee is convened to provide recommendations to the Secretary of State. It would be an important confidence booster if this committee could be put in place now so that it may start work as soon as the restructuring allows.
Appropriate investment in M.E. could transform the lives of more than a million people, to bring hope and long dreamed of contributions. I hope very much that we may have the opportunity to meet soon to discuss this, perhaps after the launch of the Big Survey results in September.
Kind regards,
Tessa Munt
Member of Parliament for Wells and Mendip Hills
Chair, APPG on M.E.
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