#ThereForME letter to the Health and Social Care Committee

Today 28 organisations are calling on the committee to conduct an inquiry into approaches to ME and Long Covid

This morning #ThereForME is sending a letter, co-signed by 28 organisations and smaller initiatives, to the UK House of Commons Health and Social Care Committee. The letter calls on the committee to conduct an inquiry into approaches to ME and Long Covid. We’re posting the full text of the letter below and you can download it here.

Select committee inquiries can be a helpful way to draw attention to issues in parliament and add scrutiny to government approaches. The Health and Social Care Committee is chaired by Liberal Democrat MP Layla Moran and last week nine more MPs were announced as members of the committee.

If you live in any of the following constituencies, your MP is on the committee! You can help amplify our call by writing to them. The Health and Social Care Committee is due to meet for the first time on Wednesday morning, so if you have the energy to write to your MP before then it might make all the difference. We’ve got a template and all the information you need to write to your MP here.

• Oxford West and Abingdon (Layla Moran MP - Committee Chair)

• Farnham and Bordon (Gregory Stafford MP)

• Isle of Wight East (Joe Robertson MP)

• Worthing West (Dr Beccy Cooper MP)

• Chelsea and Fulham (Ben Coleman MP)

• Uxbridge and South Ruislip (Danny Beales MP)

• Calder Valley (Josh Fenton-Glynn MP)

• Ealing Southall (Deirdre Costigan MP)

• Thurrock (Jen Craft MP)

• Birmingham Erdington (Paulette Hamilton MP)

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Dear Layla,

We write to you in your capacity as Chair of the Health and Social Care Committee. Whilst we are grateful for your personal efforts on the issue of Long Covid, we wish to draw the committee’s attention to inadequacies, present and historic, in care for people with ME and Long Covid. We are calling on the committee to undertake an inquiry into this legacy of neglect and its resulting impact on the UK’s health inequalities, economic growth and pandemic preparedness.

Patients with ME have one of the worst qualities of life of any disease but have faced decades of substandard care and insufficient research funding. Recently, a Prevention of Future Deaths report following the inquest for Maeve Boothby-O’Neill highlighted ‘non-existent’ care for those most severely affected by ME, outlining the need to strengthen NHS care and research.

Since 2020 these gaps have also impacted people with Long Covid. According to ONS data, at least two million people in the UK have been affected by Long Covid. There is significant overlap with ME: approximately half with Long Covid meet the criteria for ME, alongside others suffering from wider health issues. A recent survey by the #ThereForME campaign, capturing stories from over 300 patients and carers affected by ME and Long Covid, found that two thirds felt that the NHS had not been there for them when they needed it. 

Each story of a patient with Long Covid or ME is an individual tragedy. Taken together, they speak to a vast loss to the UK’s society and economy. In early 2023 the National Institute for Health and Care Research LOCOMOTION study put the aggregate productivity loss of Long Covid at £10 billion nationally, spanning patients and caregivers. The development of meaningful treatments would represent an investment in the UK’s economic growth: returning people to work, bringing children and young people back to school, and lifting a heavy toll on family carers. Strengthening care for infection-associated chronic conditions such as ME and Long Covid is also key for the UK’s future pandemic preparedness, yet the Covid Inquiry has highlighted how little progress has been made. 

There are many under-supported conditions that the committee will wish to explore, but this represents a real opportunity to leave a clear and lasting legacy, initiating timely progress on an issue of importance. The Government is due to publish its first-ever delivery plan for improving the treatment of ME this Winter but urgency is lacking. Meanwhile, impacts on the workforce and the marginalisation of patient communities are damaging the UK in real time.

We recommend that an inquiry is undertaken by the Health and Social Care Committee with a remit to investigate:

• Current gaps in care for ME and Long Covid, and their connections to historic approaches to infection-associated chronic conditions (including NHS care and research funding); 

• Economic impacts, including the relationship between growing economic inactivity in the UK’s working age population and the lack of meaningful service provision for people with ME and Long Covid;

• Recommendations to strengthen future care and research for people with ME, Long Covid and other infection-associated chronic conditions - and how this can inform wider pandemic preparedness (including public health prevention strategies to mitigate the future health burden of infection-associated chronic conditions);

• Attitudes towards and assistance for patients with ME and Long Covid in society, including benefits provision, disability assistance, social care and guidance for settings including workplaces and education.

Representatives from the #ThereForME campaign would be happy to meet with you to discuss working with the committee to progress this issue.

Kind regards,

• #ThereForME

• Action for ME

• Co-EQ

• CrunchME

• Forward ME

• Hope 4 ME & Fibro Northern Ireland 

• Keyworker Petition UK

• Kirklees & Calderdale Independent ME Support Group

• Long Covid Advocacy

• Long Covid Kids

• Long Covid Nurses and Midwives UK

• Long Covid SOS

• Long Covid Support

• #MEAction Scotland

• #MEAction UK

• ME Association

• ME Research Collaborative Patient Advisory Group

• Not Recovered UK

• Oxfordshire ME Group for Action

• Patient Safety Learning

• POTS UK

• Physios for ME

• Science for ME

• SEDSConnective

• Sheffield ME and Fibromyalgia Group

• Supporting Healthcare Heroes

• UniteToFight

• World Health Network