Consultation outcome

Improving the experiences of people with ME/CFS: consultation outcome

Updated 19 December 2024

Introduction

On 9 August 2023, the Department of Health and Social Care (DHSC) published a cross-government interim delivery plan (IDP) on myalgic encephalomyelitis/chronic fatigue syndrome that was developed in close collaboration with key stakeholders. The IDP set out actions on research, attitudes and education of professionals, and living with ME/CFS, with an aim to bolster care and support for people living with the condition.

On the same day, DHSC launched a public consultation to seek views from individuals and organisations on how well the IDP identified and addressed key issues that the ME/CFS community faced, and where further action may be needed. The consultation closed on 4 October 2023.

The consultation received 3,338 responses. Of these:

• 3,113 were from individuals sharing their personal views
• 125 were from individuals sharing their professional views
• 53 were from individuals responding on behalf of someone else
• 47 were from organisations

Most organisations that responded were from the voluntary or third sector, although we also received responses from organisations in the public and private sectors, as well as other professional bodies and organisations.

A consultation in easy read format ran from 4 September 2023 to 30 October 2023. We received 244 responses to the easy read consultation. Most of these were from people who said they have, or think they have, ME/CFS.

Of the total 3,582 responses, there were 3,323 valid online responses from individuals (those responding as individuals sharing their personal views or on behalf of someone else). There were 123 valid online responses from individuals sharing their professional views and 47 from organisations.

This document summarises the consultation responses only and is not intended to announce new government actions on ME/CFS. The consultation responses, alongside continued stakeholder engagement, will inform the development of the final delivery plan on ME/CFS, which we aim to publish by the end of March 2025. As was the case with the IDP, the final delivery plan will be co-produced with stakeholders, through the ME/CFS Task and Finish Group, after careful consideration of the consultation responses and the assessment of the feasibility and viability of the proposed actions. Since the publication of the IDP, progress has been made on actions relevant to education and research, including the development of NHS England’s e-learning module on ME/CFS and closer collaboration between DHSC and researchers.

In the IDP, chapters entitled ‘Research’, ‘Attitudes and education of professionals’ and ’Living with ME/CFS’ all set out key problems to be addressed, some proposed descriptions of the future vision to be achieved and best practice principles for all interested parties to be aware of. Specific actions across all sections were set out in the ‘Agreed actions’ chapter of the IDP.

This document summarises key messages and suggestions for further improvement, from consultation respondents, for each of the chapters of the IDP. It should be noted that, in some cases, contradictory messages and suggestions were submitted by different respondents. Diversity of opinion is appreciated and will be addressed through the ME/CFS Task and Finish Group discussions.

While the IDP covered the population of England, the consultation was open to all UK residents. Devolved governments have received the responses from their jurisdictions so that they can consider respondents’ feedback on devolved matters. They will also be involved in the development of the final delivery plan as appropriate.

DHSC is grateful to all respondents for providing their detailed responses, particularly those with lived experience. The consultation responses will be invaluable as we consider how care and support for people living with this debilitating condition could be improved.

Research

This chapter of the IDP set out 4 priority problem statements, the background, the establishment of the Research Working Group, how we will know the IDP has been a success and examples of best practice in relation to research.

Of the individual responses, 97.1% of respondents selected ‘strongly agree’ or ‘agree’ to the contents outlined in the ‘Research’ section of the IDP.

Of those who responded to the multiple-choice question on ‘Suggestions for improvements’:

• 45.5% said some content could be more detailed
• 33.8% said some content could be simpler or clearer
• 28.2% said some content is missing
• 22.3% said some content does not reflect their experience

Messages and suggestions for further improvement to the IDP content from the survey respondents, in order of strength of support, related to:

• ring-fencing funding, as well as securing more funding and parity of funding with other conditions
• scope of research
• quick wins
• rebuilding trust with people with ME/CFS

Expanding on the above, key messages from the consultation respondents were as follows.

Funding

While supporting the ‘Research’ chapter and the positive language in the IDP, there is a need for a funding commitment, including ring-fenced funding, particularly for biomedical research, to ensure parity with other long-term conditions and to make a tangible impact.

Grant funding to projects aligned with the James Lind Alliance top 10s of priorities for research.

Strategy

Develop an actionable ME/CFS research strategy. SMART (specific, measurable, achievable, relevant and time-bound) research targets and metrics, and monitoring of actions and milestones, should be put in place. Short-term, medium-term and long-term goals should be identified.

There is a need for co-operation and join-up at international level.

Provide annual report on why (un)successful applications were accepted or rejected from the Medical Research Council and the National Institute for Health and Care Research (NIHR).

Set up a centralised database of research and a centre for research excellence, as proposed in the 2022 All-Party Parliamentary Group report.

Research capacity

Encourage funders to prioritise research into ME/CFS and educate those involved in the processes to ensure fair assessment of applications.

Put in place actions to increase research capacity, and proactively encourage research proposals and grant applications.

Attract and keep researchers in the field, including by securing funding and putting in place actions to support researchers at different stages (such as studentships and fellowships). A more cohesive and inclusive research community is needed, and researchers should be experienced in ME/CFS.

Join up researchers to maximise benefits and reduce duplication.

Research scope

Focus on biomedical research and research into repurposing medicines used to treat other conditions with overlaps in symptomatology, rather than psychosocial research. There is an urgent need to identify biomarkers for this illness, and some respondents felt that psychological research into ME/CFS should be paused until we have a better understanding of biological aspects of the disease. Other respondents, however, expressed concern about the general trajectory of research towards a purely biomedical focus and away from any consideration about the importance of biopsychosocial factors in this condition.

Compose a list of all aspects that should be researched, including impact of childhood trauma. Research should also investigate the impact of stress and socio-economic factors on recovery.

Research and understanding of other overlapping functional conditions (such as functional neurologic disorder or irritable bowel syndrome) may have a higher yield.

Research into different types of ME/CFS (such as severe) and age groups (such as children and young people), as well as more research into those who are recovering or have recovered from ME/CFS and long COVID, is needed.

Decode ME was given as a great example of a successful study.

Openness required to ‘avoid tunnel vision’, including looking beyond long COVID as a trigger.

Combine research into long COVID and ME/CFS.

Research to assess the current disease burden of ME.

Research into the harms suffered by ME/CFS patients due to relapses, disease progression and trauma caused by process deadlines, the assessment or review process, issues with duration, behaviours, environment, poor understanding and so on.

The need for research that could have quick results, including the benefits of taking supplements. More research into complementary medicine.

Focusing on a neuroplasticity-based approach was described as helpful. More research is needed on acupuncture and vagus nerve damage.

Patient involvement

Include patients with ME/CFS in study cohorts rather than people experiencing fatigue, and ensure inclusion of the ME element when naming the condition.

Research best practice for severe ME/CFS, adapt studies to enable participation of people with severe and very severe ME/CFS symptoms, and encourage their participation.

Ensure patients feel included and plan research with those with lived experience, taking their needs into consideration.

Include people with ME/CFS in other research as a control group - for example, immunological and gastrointestinal research.

Explore personal stories of people with ME/CFS and long COVID where gradual increase in exercise led to improvement in symptoms.

Attitudes and education

Improve knowledge of healthcare professionals, including educating neurologists who should be on board with research.

There was objection to the problem statement that people with ME/CFS and their carers do not always trust research. However, some respondents raised flawed research from the past causing significant damage to health, attitudes and confidence. Dedicated actions are needed to address distrust between funders, researchers and patients. Literature and journals may still include references to flawed research, such as regarding exercise therapy, despite the National Institute for Health and Social Care Excellence (NICE) finding no evidence to support this approach.

An excessive focus on breakthroughs in medical science being the only hope for people with ME/CFS may be harmful because it is disempowering, does not provide practical solutions, misunderstands the nature of functional illnesses, and is unrealistic.

Address sex bias in disease - 75% of people with ME/CFS are female.

Attitudes and education

This chapter of the IDP set out 6 priority problem statements, how we will know the IDP has been a success and examples of best practice in relation to attitudes and education of professionals.

Of the individual responses, 98.3% of respondents selected ‘strongly agree’ or ‘agree’ to the contents outlined in the ‘Attitudes and education of professionals’ section of the IDP.

Of those who responded to the multiple-choice question on ‘Suggestions for improvements’:

• 50.7% said some content could be more detailed
• 32.9% thought some content is missing
• 23.2% thought some content does not reflect their experience
• 18.5% thought some content could be simpler or clearer

Messages and suggestions for further improvement to the IDP content from the survey respondents, in order of strength of support, related to:

• the need for training
• language in the IDP
• the inconsistent response of health services
• overlooked physical symptoms
• trauma, frustration, stigma, disbelief, indifference and neglect experienced by patients
• updating resources
• the need for stronger actions
• the attitude of the Department for Work and Pensions (DWP)

Expanding on the above, key messages from the consultation respondents were as follows.

Strategy and funding

The IDP vision was described as good or excellent, but some respondents point to actions on training needing to be stronger and the plan needing to be backed up with funding.

Set out timelines for the plan with measurable outcomes, statutory enforcement and monitoring of objectives.

Education and training

More training is needed and bias against ME/CFS should be removed, including changing the name of the condition away from CFS.

Healthcare professionals, employers, DWP staff and special educational needs co-ordinators (SENCOs) in schools require training. Training should be mandatory for healthcare professionals, and NHS trusts and GPs should be monitored to ensure compliance.

NHS England websites and the Department for Education (DfE) statutory guidance on Education for children with health needs who cannot attend school should be kept up to date. Better resources are needed for GPs to help them understand how they can help - for example, guidance on medicines and teaching on malnutrition.

Learnings should be adopted based on best practice services - for example, the Leeds and West Yorkshire ME/CFS Service.

People with ME/CFS and patient groups should be involved in the training process by helping to devise training materials, and providing patient stories and face-to-face contact with healthcare professionals during training.

There is a strong emphasis on the necessity of ongoing continuous professional development and adherence to updated guidelines to ensure practitioners remain informed about ME/CFS.

Run a public information campaign to increase awareness of ME/CFS.

Healthcare professionals need psychological support in order to cope with patients who, due to feeling unwell and unsure what to do, are angry and frustrated.

Ethical considerations and reflexivity in practitioner attitudes were highlighted as critical components of effective training. There is a significant need for healthcare professionals to adopt a more compassionate approach that focuses on individualised treatment, rather than defaulting to prescriptions for antidepressants. 

Severe ME/CFS

Understanding severe ME/CFS should be a top priority. NHS services are not flexible to people who are housebound.

Promotion and compulsory implementation of NICE guideline [NG206] on ME/CFS is needed as there is a lack of engagement with the guideline. Commissioners need to understand about ME/CFS and the NICE guideline so they can commission the services, particularly for people with severe and very severe ME/CFS.

Medics need to understand that people with severe symptoms need palliative care. Doctors should not withhold diagnosis because this is important for their own information, peer support and other services.

Research

There was some difference in opinion in terms of the specific aspects of ME/CFS that we should be focussed on. Some emphasised the inclusion of psychological or biopsychosocial approaches. Others suggested a stronger focus on the biological aspects of ME/CFS. It was noted that ME/CFS services should not be provided as mental health services, suggesting restructuring into more appropriate specialisms, such as rheumatology, because physical symptoms are often overlooked.

Respondents suggested conducting surveys or qualitative studies to explore and compare the attitudes of healthcare professionals and patients towards ME/CFS, aiming to identify gaps and promote understanding. Additionally, patients with ME/CFS should have a way of reporting professionals with negative attitudes. Outdated attitudes from clinicians are the most distressing aspect of the illness after the symptoms themselves.

Language in the IDP

The plan understates the level of stigma, disbelief, neglect and indifference that people with ME/CFS experience, which leaves them feeling frustrated and traumatised. 

There was disagreement with the wording in the IDP about patients misunderstanding medical terms such as ‘medically unexplained symptoms’ and ‘functional disease’. Medics should not be using these and similar terms to avoid diagnosing ME/CFS and circumvent NICE guidelines.

The vast majority of people with ME/CFS have had negative experiences with staff and this section of the plan should reflect that.

Living with ME/CFS

Quality of life

This chapter of the IDP set out 2 priority problem statements, how we will know the IDP has been a success and examples of best practice in relation to quality of life for people with ME/CFS.

Of the individual responses, 98% of respondents selected ‘strongly agree’ or ‘agree’ to the contents outlined in the ‘Quality of life’ section of the IDP.

Of those who responded to the multiple-choice question on ‘Suggestions for improvements’:

• 58.7% said some content could be more detailed
• 37.6% said some content was missing
• 17% said some content does not reflect their experience
• 13.7% said some content could be simpler or clearer

Messages and suggestions for further improvement to the IDP content from the survey respondents, in order of strength of support, related to:

• misunderstanding of the complexity of the condition
• the severe impact on quality of life for people with ME/CFS
• the reduced quality of life for families and unpaid carers without support
• the importance of financial security
• the need for compliance requirement for agreed actions
• the lack of treatment and research
• insufficiency of adaptations to improve activity participation

Expanding on the above, key messages from the consultation respondents were as follows.

Strategy

There were positive comments around the aims of the impact statement, but respondents stated that actions are not sufficient and should be more tangible with realistic goals.

There needs to be a reclassification of the terms ‘severe’ and ‘mild’ to describe the impact of ME/CFS. Additionally, ME/CFS sufferers should not be treated as a homogenous group, and support strategies should cater to varying severity levels.

Improving quality of life should be the ultimate goal. Lacking energy for self-advocacy ends up making the situation worse for people with ME/CFS who experience feelings of being a burden, mental health impact and healthcare professionals not caring.

Impact on families and unpaid carers

ME/CFS severely impacts quality of life for the individual, but also for family and unpaid carers without support. There is a need to distinguish ‘wants’ and ‘needs’ for those with ME/CFS. There are difficulties in finding balance - for example between taking part in social activities and other aspects of life - which impacts family too. More support, especially domestic assistance, should be available to help individuals manage their daily lives.

Employment and financial impact

Being able to work and remaining in work is crucial. There is a need to inform employers that some individuals with ME/CFS can work with reasonable adjustments, and employers need to offer support to people with ME/CFS. At the same time, people should not be forced into work. Equally, children are still expected to attend school, and there is nothing in the chapter about what help could be provided.

More guidance is needed for employers. Better understanding is needed of the fluctuations in symptoms as misconceptions around this hamper quality of life.

The importance of financial security, to which quality of life is linked, is stressed. There are barriers to accessing financial support, including fluctuating symptoms of ME/CFS. Include descriptions of the financial and social implications of ME/CFS. Outline the support mechanisms intended to address the financial, emotional and medical impacts of ME/CFS. The secondary effects of ME/CFS, including difficulties in work, study and daily functioning, can be as debilitating as the primary physiological disorder itself.

Education and training

There is a general misunderstanding of the complexity of the condition - improving this can contribute to improving quality of life through a series of support measures and interventions. Impact on the quality of life is underplayed compared with other long-term conditions.

Awareness alone is not sufficient due to the amount of misinformation and stigma. It must go hand in hand with education. Strong actions must be taken with the media.

Encourage the mapping of existing voluntary, community and social enterprise sector support networks, and target funding to enhance these resources. 

Better use of terminology will improve understanding, such as not using ‘chronic fatigue’. A comprehensive explanation of the extent of symptoms is needed.

Research

Pain has a huge impact on quality of life, and the lack of treatment makes this worse. More research is needed as there is a lack of treatment. Late diagnosis also exacerbates the problem.

Severe ME/CFS

There is no provision for those who have severe or very severe ME/CFS. The barriers for those who are housebound or bedbound are not addressed - for example, home visits refused by GPs and no access to dentists, opticians or occupational therapists. General necessity for more home care and a social care package. Compulsory training related to the needs of people with severe or very severe ME/CFS is needed urgently. Symptoms and problems experienced due to severe or very severe ME/CFS need to be included in the final delivery plan - for example inability to speak, swallow and the need for tube-feeding.

Recommendations to make assisted dying available are required.

The severity of ME should be stressed, and there is no strong evidence that those with ME/CFS will ever recover.

Language in the IDP

There was discontent with the wording of problem statement one in the IDP: ‘quality of life is often significantly reduced’. The statement does not reflect the severity of ME/CFS, which can cause significant loss of abilities and quality of life. There is a lack of adaptations for those with ME/CFS to participate in meaningful activities.

The IDP chapter should convey a more hopeful message about recovery and improvement, highlighting success stories, particularly those involving a mind-body approach.

There is a call for vivid descriptions of the severe impacts on quality of life, including long-term consequences for individuals who became ill in their youth. Incorporating real-life examples and quotes to illustrate the lived experiences of those with ME/CFS is crucial.

Support for children and young people with ME/CFS

This chapter of the IDP set out 2 priority problem statements, how we will know the IDP has been a success and examples of best practice in relation to education and social care provision for children and young people with ME/CFS.

Of the individual responses, 98.5% of respondents selected ‘strongly agree’ or ‘agree’ to the contents outlined in the ‘Support for children and young people with ME/CFS’ section of the IDP.

Of those who responded to the multiple-choice question on ‘Suggestions for improvements’:

• 49.2% said some content could be more detailed
• 33.7% said some content is missing
• 20.4% said some content does not reflect their experience
• 19.9% said come content could be simpler or clearer

Messages and suggestions for further improvement to the IDP content from the survey respondents, in order of strength of support, related to:

• improving awareness to prevent harm from false accusation of fabricated illness
• adaptations to physical environments and integration of pacing to support education
• the pressure and harm of physical attendance
• the need for education and recognition of ME/CFS as a disability to improve access to support in schools
• difficulty accessing timely support for children
• financial pressures for families and support for adapting education

Expanding on the above, key messages from the consultation respondents were as follows.

Training

Improve awareness to prevent harm from false accusation of fabricated illness. Parents require support as they face child protection action due to their unwell children not attending school. The issue of inappropriate safeguarding referrals should be addressed, a sensitive approach should be taken, and multiple stakeholders, including ME/CFS specialists and experts, should be involved. There is a need for training in ME/CFS for those handling safeguarding inquiries, in line with NICE guideline [NG206].

There should be training of teaching and guidance staff to enable them to assess needs, put in place provisions, and support social development and inclusion.

Legislation and enforcement

Carry out a review of existing social care legislation related to disabled children, support available and how to access support, and ensure local authorities know what they are expected to provide. 

A school absence code for long-term illness should be implemented.

Education

Adaptations to physical environments and integration of pacing to support education is required. Tailor education to the child in a quiet environment in short bursts through home and online schooling. Support in school or university is important, including during transition from school to university.

Greater awareness of the harm of physical attendance is needed, including pushing beyond energy limits and exposure to infections. Greater emphasis should be placed on maximising health outcomes rather than just school attendance.

There is a need for education and recognition of ME/CFS as a disability to improve access to support in schools. Respondents highlighted financial pressures for families and necessary support for adapting education.

Flexibility in education arrangements is needed, including:

• adjustments for form of schooling and examination, placing the emphasis on education rather than attendance, which can be harmful
• a flexible timetable to allow for variability in energy
• involvement of the Office for Standards in Education, Children’s Services and Skills (Ofsted) and exam boards when updating guidance (such as extra time, delayed starts or home-based assessments)

ME/CFS is a long-term condition and may often require extended remote education. DfE’s Providing remote education: guidance for schools is contradictory to DfE’s promise to update guidance on ‘education for children with health needs who cannot attend school’.

There is a difficulty accessing timely support for children. Early support gives the best chance of education continuation. Children should be allowed to resume education once they are well enough and should be supported to stay in the system. There were calls for more detailed information on support for home schooling and transitioning back to mainstream education.

Strategy

Shared responsibility in care was highlighted. Respondents suggested collaboration between DHSC and DfE to address educational needs of children and young people with ME/CFS. Joint working required between DHSC, DfE and local authorities about difficulties in obtaining education and health and care plans with social services and GPs. There needs to be understanding between authorities and care workers about the needs of children and young people with ME/CFS and safeguarding concerns. Clarify whether GPs are sufficient as a reliable source for diagnosis, rather than waiting for the consultant confirmation that schools ask for.

Integrated services for children and young people are needed.

It was noted that social care involvement might be more harmful than helpful for families already struggling due to ME/CFS. A shift towards providing targeted support was suggested instead.

There was a call for messaging that emphasises hope, and provides information on recovery possibilities and improvement strategies.

There were recommendations to leverage existing voluntary, community and social enterprise sector support networks rather than expect new initiatives. 

Health services for people with ME/CFS

This chapter of the IDP set out 4 priority problem statements, how we will know the IDP has been a success and examples of best practice in relation to provision of health services for children and adults who have ME/CFS.

Of the individual responses, 97.8% of respondents selected ‘strongly agree’ or ‘agree’ to the contents outlined in the ‘Provision of health services’ section of the IDP.

Of those who responded to the multiple-choice question on ‘Suggestions for improvements’:

• 48.6% said some content could be more detailed
• 43.1% said some content is missing
• 20.6% said some content does not reflect their experience
• 15% said some content could be simpler or clearer

Messages and suggestions for further improvement to the IDP content from the survey respondents, in order of strength of support, related to:

• failure of the health system
• inconsistency and the lack of help
• health services for severe and very severe ME/CFS
• early help and clinicians who believe patients
• the lack of management options
• clinicians blaming patients
• compliance with NICE guidelines on ME/CFS
• physical symptoms being ignored

Expanding on the above, key messages from the consultation respondents were as follows.

Failure of the health system

While agreeing with the problem statements, respondents stated there is a need for more specific actions that will go further and address the failure of the health system, including:

• the long waiting times to be diagnosed and offered help
• NICE guidelines on ME/CFS not being implemented effectively or consistently
• ME/CFS clinics not being available to new patients due to long waiting times
• having to resort to private healthcare
• inappropriate attitudes and lack of compassion
• patients distrusting health services after being dismissed by healthcare professionals (for example due to ‘normal’ blood test results)
• inaccessibility of services for people with severe or very severe ME/CFS
• regional inequalities in access
• lack of access to dental care, eye care, smears, GPs and psychological support
• short and infrequent appointments instead of a necessary full consultation and a review with a specialist

Consistency in service provision

Care and treatment options should be standardised, and a clinical pathway and specialised services should be established. Care and support is inconsistent, time-limited and lacking, with varying levels of treatment being provided - some experiences are positive but many are negative. Uniform minimum provision is needed, with an agreed procedure to allow patients to understand what support is available and what to expect. 

There is a need for consistent, multidisciplinary health services in line with the NICE guidelines on ME/CFS. There was a suggestion for an external body to review service provision and hold integrated care boards (ICBs) accountable for local provision. ICBs need to give priority to developing services for ME/CFS.

Specialists and multidisciplinary teams

Significantly more healthcare professionals are needed, such as specialist doctors, nurses for home visits, physiotherapists and dieticians. ME/CFS clinics need to be led by doctors or experienced generalists rather than mental health staff and physiotherapists. Respondents called for access to multidisciplinary care teams with a named contact for each patient. Ensure each healthcare team has at least one person trained and knowledgeable in the care of ME/CFS on call at all times. Respondents highlighted issues regarding staff retention and recruitment, and stated that secure funding and pay for healthcare professionals is needed.

People with severe ME/CFS require specialist nutritional support and palliative care services. Monitor patients in the community for signs of malnutrition.

ME/CFS has implications for mental health (for example, anxiety and depression). An annual health check was suggested so any new symptoms can be investigated and not dismissed as part of ME/CFS. People with ME/CFS need access to health specialists for comorbid conditions (for example, postural orthostatic tachycardia syndrome or mast cell activation syndrome).

Establish small, specialised teams for carers, including unpaid carers, that understand individual needs, to minimise interaction and exhaustion.

Strategy

Adopt person-centred care and multiple short visits to avoid exhaustion. Consider how health appointments can be staggered or spread out on a case-by-case basis, and appropriate ‘rest areas’ made available. Healthcare settings need to be adapted for people with ME/CFS, and a plan should be made on supporting people appropriately in hospitals to avoid environmental stress.

Explore access to off-label treatments such as those available in the USA .

Offer early help for new patients on pacing and online resources.

Respondents who described themselves as being in remission or recovered from ME/CFS highlighted the importance of giving people hope in improvement and recovery.

Collect data on the harm caused to patients from prescribed treatments.

Adult social care

This chapter of the IDP set out the priority problem statement, how we will know the IDP has been a success and examples of best practice in relation to adult social care support.

Of the individual responses, 97.6% of respondents selected ‘strongly agree’ or ‘agree’ to the contents outlined in the ‘Provision of adult social care’ section of the IDP.

Of those who responded to the multiple-choice question on ‘Suggestions for improvements’:

• 48.4% thought some content could be more detailed
• 37.4% thought some content is missing
• 25.3% said some content does not reflect their experience
• 18.1% thought some content could be simpler or clearer

Messages and suggestions for further improvement to the IDP content from the survey respondents, in order of strength of support, related to:

• the lack of knowledge and signposting about available social care support
• the need for joined-up health, social care and financial support services
• poor experience of support received due to lack of understanding and specialist training
• a reliance on family support due to inadequate support from the government
• how support is not fit for the flexible care needs of people with ME/CFS
• how support is needed to apply for benefits
• an advocate role being needed to support patients and families

Expanding on the above, key messages from the consultation respondents were as follows.

Education and support

Improve awareness of social care support available, including signposting, as it is not always clear what support is available.

Increased support is essential for individuals with adult social care who wish to enter supported education or employment settings.

Support is needed on claiming benefits, both due to lack of energy to engage with the process and unawareness of the support available.

An advocate role is needed to support sufferers and family, help with signposting and decision-making, and navigate support, particularly for severe and very severe ME/CFS.

There were reports of poor experience of support and care received due to neglect and lack of understanding. Standards of care for ME/CFS and specialist training are required. ME/CFS e-learning should be a mandatory requirement for the adult social care workforce to enhance skills and knowledge.

Include information for self-funders seeking care, including signposting on details about brokerage services. Currently, local authorities provide a list rather than support in the process.

Strategy

There is a need for joined-up health, social care and financial support services. Care for individuals with chronic illnesses like ME/CFS should be holistic, addressing financial, social, family, educational and workplace needs to ensure comprehensive support. Establish specialised or interdisciplinary teams who understand the needs of people with ME/CFS.

Acknowledgment of the workforce crisis in social care is necessary. Recruitment and retention issues hinder the ability to meet the growing demands of individuals with ME/CFS.

Reliance on family support was highlighted due to inadequate support from the government.

Support needs to be offered in the longer term, and be more flexible to accommodate variations and changes in symptoms manifestation. Equally, changes to social care assessment are needed. The assessments are challenging to complete and do not account for the fluctuating nature of the condition. People with ME/CFS face significant barriers, including lengthy phone calls, extensive forms and physical assessments, which can lead to them being deemed ‘not sick enough’ for necessary care.

There is a need for a more optimistic narrative regarding care and support, emphasising improvement and positive outcomes.

Young people transitioning to adulthood often feel abandoned at 18 years old due to the expectation that they develop independent living skills at a similar pace as peers, despite their ongoing need for care and support. 

Funding

There is a pressing need for increased funding to enhance the quality and accessibility of social care services.

Welfare support

This chapter of the IDP set out the priority problem statement, how we will know the IDP has been a success, information about welfare support services, and DWP’s vision.

Of the individual responses, 94.6% of respondents selected ‘strongly agree’ or ‘agree’ to the contents outlined in the ‘Provision of welfare support’ section of the IDP.

Of those who responded to the multiple-choice question on ‘Suggestions for improvements’:

• 48.3% said some content could be more detailed
• 37.6% said some content is missing
• 27.8% said some content does not reflect their experience
• 18.8% said some content could be simpler or clearer

Messages and suggestions for further improvement to the IDP content from the survey respondents, in order of strength of support, related to:

• support during the assessment process
• Personal Independence Payment (PIP) assessment issues
• professional input into assessments
• a lack of understanding from assessors
• understanding the wider impacts of ME/CFS

Expanding on the above, key messages from the consultation respondents were as follows:

Assessment processes

Provide assistance during the benefits assessment process as the application process is difficult to navigate. Assessments are lengthy, rigid and taxing, and do not account for fluctuating symptoms, all aspects of daily living or hidden disabilities. The application and appeals processes are fatiguing. DWP’s work plan, Transforming Support: The Health and Disability White Paper, does not offer a way forward.

Risks associated with post-exertional malaise (PEM) should be acknowledged and adjustments for the application or assessment process made (such as home visits).

The PIP form is not accessible. There is a time limit to complete long forms, and symptoms of ME/CFS are a barrier to completing the forms.

PIP descriptors need to be changed. Criteria for welfare support should change (for example, ME/CFS diagnosis from GPs and adopting a ‘whole person’ approach).

Assessments are done on appearance, not lived experience. Applicants with ME/CFS often do not meet the disability criteria, feeling they have to prove they are ‘ill enough’, hindering access to support. Cognitive dysfunction should be recognised as a disability.

Frequent assessments every 2  years cause considerable anxiety and can lead to ME/CFS flare-ups, compounding the challenges faced by people with ME/CFS.

Training

Assessors require mandatory training to improve their awareness and understanding of the complexities of ME/CFS, and ensure fair assessments for people with ME/CFS.

Strategy

Health professionals should be involved in the decision-making process for welfare benefits.

The benefits system needs an overhaul and more information or signposting to available benefits needs to be provided.

Benefits should be available until the patient feels a change in condition. 

Employment

This chapter of the IDP set out 2 priority problem statements, how we will know the IDP has been a success and examples of best practice in relation to supporting people with ME/CFS, and their unpaid carers, to stay in work or secure employment.

Of the individual responses, 88.5% of respondents selected ‘strongly agree’ or ‘agree’ to the contents outlined in the ‘Provision of employment support’ section of the IDP.

Of those who responded to the multiple-choice question on ‘Suggestions for improvements’:

• 41.4% said some content could be more detailed
• 35.8% said some content does not reflect their experience
• 36.7% said some content is missing
• 16.3% said some content could be simpler or clearer

Messages and suggestions for further improvement to the IDP content from the survey respondents, in order of strength of support, related to:

• flexible employment
• better recognition of severe ME/CFS by employers
• issues with DWP’s target of getting disabled people into work
• the lack of employment support and poor Work Capability Assessment
• employment adding to ME/CFS progression
• the complexity of pressures and expectations
• the lack of flexibility, sick leave and benefits for people with ME/CFS
• recognition of difficulties faced by smaller employers
• the need to focus on quality of life and volunteering opportunities
• the lack of a level playing field in the job market, with need for employer incentives
• patients feeling unreliable as employee and unable to sustain employment
• the need for specific, tailored energy management adaptations
• how work compromises energy left for daily activities
• difficulty finding employment that suits skills and ME/CFS
• ME/CFS’s impact on employment due to lack of treatments
• employers resisting ill-health retirement

Expanding on the above, key messages from the consultation respondents were as follows.

Guidance and education

DWP guidance for employers is needed. Employers should:

• offer flexible employment, ill-health retirement and appropriate sick leave
• recognise ME/CFS as a severe condition with a lack of treatments, and adhere to the disability definition in the Equality Act 2010
• recognise the complexity of pressures and expectations with phased return to work, shorter working hours, remote working, reduced responsibility to accommodate cognitive dysfunction and energy limitations, transition support and occupational health support

DWP should recognise that, while some individuals may work with adjustments, most people with ME/CFS cannot sustain employment. DWP’s target to get disabled people into work is problematic and simplistic. There is an impact of forced employment on people with ME/CFS, with work compromising the energy required for basic daily activities. People should not be forced into work when they are not ready, especially during early stages, to prevent relapses. Focus should be on quality of life, with some support for volunteering as a priority.

Strategy

Employers need incentives. There needs to be recognition of difficulties faced by smaller employers in particular, and of the lack of government support and funding.

People with ME/CFS have difficulty finding and sustaining employment that suits both their skills and their condition. Access to an occupational therapist in occupational health or DWP vocational support would be the best way forward.

There is a lack of employment support, and the Work Capability Assessment is poor. Reasonable adjustments at work are insufficient. There is a need for specific, tailored energy management adaptations in the IDP.

Employment support needs should be considered for all individuals, including unpaid carers who may work reduced hours or work flexibly to support people with ME/CFS.

It would be beneficial to have job-share opportunities, remote-working opportunities, and access to roles that are less time dependant, as well as to roles that can address social isolation.

 Agreed actions

This chapter of the IDP set out agreed actions across research, attitudes and education of professionals, broader awareness and understanding, and statutory support, aiming to address the problems identified and achieve the impact proposed by stakeholders.

For individual responses, all agreed actions outlined in the IDP had a high ‘agree’ or ‘strongly agree’ response rate of over 96%.

Overall, respondents described actions in the IDP as positive and comprehensive, but lacking urgency and ambition. Respondents proposed a SMART action plan supported by funding, action monitoring, outcome measuring, and clear accountability and transparency.

Research

96.6% of individual respondents strongly agreed or agreed with the actions outlined for improving research in ME/CFS.

Six actions proposed in the IDP include:

• support for workshops with funders, academics and people with ME/CFS on how to develop research questions
• commissioning a landscaping review of national and international work underway in ME/CFS
• support for funders to raise awareness of opportunities for research funding
• support for funders to raise awareness of mechanisms for effective patient and public involvement and engagement in research
• support for development of case studies of research that show good practice
• support for engagement with initiatives to educate clinicians and practitioners about ME/CFS

Key actions proposed by respondents were:

• a research funding commitment
• production of a targeted research plan
• an urgent need for more research, particularly biomedical research, to understand causes and treatments

Attitudes and education

97.4% of individual respondents strongly agreed or agreed with the actions outlined for improving attitudes and education towards ME/CFS.

Nine actions proposed in the IDP include:

• considering how to increase our knowledge of public sector professionals’ current attitudes towards ME/CFS
• the development of an NHS England e-learning module on ME/CFS for professionals and the public
• updating NHS England and the NHS Health at Work Network webpages on ME/CFS
• encouraging development and sharing of learning resources and an NHS England e-learning module on ME/CFS to UK medical schools and wider organisations
• encouraging signposting and sharing of e-learning with educational organisations and providers, as well as updating DfE guidance
• supporting and promoting the work of stakeholders to raise awareness and knowledge within the social work profession about severe ME/CFS
• inclusion of ME/CFS in the scope of the Medical Licensing Assessment
• ensuring that the training on ME/CFS keeps pace with research and guidance in the core postgraduate training for primary and secondary care physicians
• production of a ‘Language matters in ME/CFS’ guide

Key actions proposed by respondents were:

• training for a broad range of professionals, including compulsory training for healthcare professionals
• a shift in attitudes and public understanding
• better guidance for schools, as ME/CFS can impact children and their education
• a stronger action plan

Awareness and understanding

97.7% of individual respondents strongly agreed or agreed with the actions outlined for improving awareness and understanding of ME/CFS.

Two actions proposed in the IDP include:

• collaboration with stakeholders to increase awareness among people with ME/CFS, and their unpaid carers, of support available from adult social care and the process for making a complaint about care, as well as identifying how best to raise public awareness of ME/CFS
• working with stakeholders to disseminate information and guidance on support available and how to access it

Key actions proposed by respondents were:

• a public awareness campaign
• SMART actions with a timeline for implementation
• inclusion of patient voices

Statutory support

96.8% of individual respondents strongly agreed or agreed with the actions outlined for improving statutory support for individuals with ME/CFS. 

Four actions proposed in the IDP include:

• reviewing existing social care legislation relating to disabled children
• working with stakeholders to consider how to better support health commissioners and providers, what local service provision should be available, and how existing national initiatives can be adapted or used for people with severe ME/CFS
• engagement with stakeholders to discuss timely diagnosis, safeguarding responsibilities, and support for children who have ME/CFS and their families
• changes set out in DWP’s Transforming Support: The Health and Disability White Paper, which will benefit people with ME/CFS, as well as other people with disabilities

Key actions proposed by respondents were:

• stronger actions and language to enforce those actions
• reforming support systems such as DWP assessments
• broader public sector support, such as funding for charities’ support services
• rebranding and a public apology to correct views about the condition
• mental health support

Language use in relation to ME/CFS

As part of the consultation, respondents with personal experience of living with ME/CFS were asked to offer their suggestions for more appropriate language that other people (for example, family members, friends and professionals) can use to show compassion and understanding.

Chronic fatigue as a symptom of ME/CFS

Respondents reported that the symptom of chronic fatigue is often misunderstood as ‘just being tired’ when, in fact, it is extreme and abnormal exhaustion.

Respondents noted:

• not understanding, empathising or being curious to understand the symptom, or how to help, can be dismissive
• use of language is important
• words such as ‘fatigue’ and ‘tired’ underplay the symptoms of ME/CFS sufferers
• PEM is the symptom that makes ME/CFS different
• acknowledging it is okay for ME/CFS suffers to take their time, and acting with curiosity, appreciation and acceptance, can be helpful

Alternative phrases proposed by respondents:

• “clearly there is more to this than just being tired - do you have any information I can read to better understand this illness?”
• “is there anything I can do to help you?”
• “would more rest help you?”
• “can you tell me more about what you are experiencing?”
• “I can appreciate the tiredness you feel is very different to mine”
• “it is okay if you need to rest right now”
• using analogies - for example, a phone battery dying - to explain how ME/CFS is not just tiredness but complete exhaustion

Recovery from ME/CFS

Respondents noted that overemphasis on recovery can raise false hope. More emphasis should be on support and managing the condition because symptoms can fluctuate.

Respondents suggested:

• do not blame, and be supportive, to help sufferers to feel more comfortable and reduce impacts on mental health
• be supportive and empathetic in managing symptoms, and understand and accept that sufferers cannot push through exercise with fatigue
• recognise that symptoms fluctuate
• shift cultural thinking, through education and training, that those with ME/CFS should try harder to get better, which is not the case

Misconceptions that ME/CFS is a mental health condition, or how you think can impact your symptoms

Respondents reported that negative responses can destroy people’s hope and set recovery back.

Respondents noted:

• a need to prevent stigma perpetuated by some professionals, and stop sufferers being blamed for their condition
• there needs to be validation and recognition of physical symptoms
• mental health impacts come from the experience of catching a disabling, invisible illness that is misunderstood
• thinking positively and psychological support can help but cannot cure
• some suggested a biopsychological approach is needed, not just medical

The lack of a medical test to prove a diagnosis of ME/CFS

There is no clear diagnostic test for ME/CFS. Therefore, it is important that symptoms are believed.

Respondents noted:

• it is important that reassurance is given and that symptoms are believed, especially when test results come back normal
• doctors should look for the 4 core symptoms of ME/CFS to support a diagnosis, once other diagnoses have been ruled out through tests
• the management of symptoms should be a priority

The lack of obvious signs that someone has ME/CFS

The cultural aspect emerged as a central theme, with respondents suggesting that discourse and assumptions about invisible illnesses need to change.  

Respondents noted:

• discourse about mobility aids, such as ambulatory wheelchairs, needs to change, as people do not always understand why they are used
• ME/CFS sufferers are misunderstood and judged on looks
• symptoms fluctuate greatly and on a day-to-day basis

Alternative phrases proposed by respondents:

• it is important to ask people how they are feeling and let them know they can change plans or leave if they are feeling unwell
• “please let me know what I can do to make your life easier”
• “it must be difficult having an illness that makes life so unpredictable”

Using pacing to manage energy

ME/CFS is a fluctuating illness, with symptoms and severity of symptoms frequently changing, making people with ME/CFS unable to prepare ahead of time. Sufferers have to prioritise how to use their energy - for some, pacing has helped, but it can be difficult.

Respondents noted:

• education is the key to people understanding ME/CFS and the correct language to use
• people need to be empathetic and compassionate, and let sufferers know they are there for them
• the symptoms of ME/CFS make socialising difficult and have financial impacts - for example, if people are out of work
• it would be beneficial for people to be aware of ME/CFS and for sufferers to understand their own ME/CFS
• use the spoon theory for dynamic disabilities

Difficulty explaining or understanding PEM

Respondents noted the need for:

• a public awareness campaign
• education and training on:
  • lack of energy, including having a lower baseline to start with, PEM, the spoon analogy, and how it can be unpredictable and involve crashes in energy
  • the difficulty around knowing how long it will take to recharge, and the importance of not putting pressure on the person to do something if they need to rest

Respondents suggested:

• asking if there is anything you can do to help
• most sufferers are happy to explain - it is better to ask if unsure
• “hope you feel better soon”
• be supportive and do not blame
• be more empathetic and understanding

Next steps

In the coming weeks, we will reconvene the ME/CFS Task and Finish Group, including senior DHSC and cross-government officials, ME/CFS specialists and representatives from NHS England, NICE, devolved governments, and ME/CFS charities and organisations.

Building on the richness of what respondents to the consultation have told us, the ME/CFS Task and Finish Group will consider and agree actions in the final delivery plan on ME/CFS, which we plan to publish by the end of March 2025.

We are committed to creating a society where every person, including those with ME/CFS, receives high-quality, compassionate continuity of care that they need and deserve, with their families and carers supported.