Ignoring M.E./C.F.S.: A Cost the UK Can’t Afford

On January 20th, 2025, a critical letter was posted Special Delivery to the office of Rt Hon Rachel Reeves MP, the Chancellor of the Exchequer, with a copy also sent to the Secretary of State for Health and Social Care. This wasn’t just another piece of correspondence; it was an urgent plea, a stark warning about a health crisis silently crippling over 1.5 million people in the UK: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M.E./C.F.S.).

The letter, penned by Sally Callow, Managing Director of Stripy Lightbulb CIC, laid bare the devastating reality of M.E./C.F.S.. It highlighted that a shocking 4.7% of all COVID-19 cases lead to the development of this debilitating condition, transforming a pre-pandemic struggle into a full-blown health emergency. Imagine, as the letter stressed, 75% of those affected are physically unable to ‘push through’ their symptoms to remain in or return to employment. This isn’t just a personal tragedy for individuals; to use Government language, it’s a significant drag on our nation’s economic potential, directly contradicting the government’s stated aim of growing the economy.

Our letter pulled no punches, emphasising the alarming disconnect between the scale of the problem and the government’s response. ‘Current policies and initiatives do not appear to reflect the urgency required’, it stated, pointing to insufficient support structures and a woeful lack of resources for groups working to address the needs of people with ME/CFS. Anecdotal evidence of continued COVID-19 infections and alarming wastewater data, coupled with a striking comparison to US infection rates, painted a grim picture of a rapidly escalating crisis.

The call to action was clear: advocate for COVID-19 mitigations in public spaces and, crucially, significantly increased funding for M.E./C.F.S. biomedical research, on par with comparable diseases like Multiple Sclerosis and Parkinson’s. The hope was that the Chancellor and the Secretary of State would recognise the profound impact M.E./C.F.S. has on individuals’ lives and economic contributions and act swiftly.

However, swift action, it seems, remains elusive.

It is now May 23rd, 2025. Over four months after that urgent letter was dispatched, a reply was finally received on May 9th – not from the Chancellor or the Treasury, but from Ashley Dalton MP, Parliamentary Under-Secretary of the Department for Health and Social Care.

While any response is, in theory, better than none, the timeline speaks volumes. A delay of nearly four months to acknowledge a letter detailing a health emergency affecting 1.5 million people and actively hindering the economy demonstrates a profound lack of urgency. This isn’t a minor administrative oversight; it’s a reflection of how far down the priority list M.E./C.F.S. appears to be.

The letter to the Chancellor wasn’t just a request for funds; it was a plea for recognition, for a paradigm shift in how M.E./C.F.S. is perceived and addressed at the highest levels of government. The prolonged silence, followed by a delayed response from a different department, sends a chilling message to the 1.5 million individuals struggling with this devastating condition: your suffering, your lost livelihoods, and your contribution to our economy are, it seems, not a pressing concern.

We must continue to amplify these voices. The M.E./C.F.S. crisis is here, it’s growing, and it demands immediate, decisive action, not months of delay. The economic and human cost of inaction is simply too high.

Our letter and the response from Parliamentary Under-Secretary Dalton can be found in full below.

20th January 2025

Dear Chancellor, 

We hope this message finds you well. We are writing to express our deep concerns regarding the significant and growing issue of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). As you may be aware, it has been reported that 4.7% of all COVID-19 cases result in the development of ME/CFS (i). We believe the pre-pandemic crisis is now a health emergency. This is a matter that requires urgent attention, as it is having a profound impact on the health, livelihoods, and economic contributions of many individuals, particularly those of working age. We believe that the prevalence of M.E./C.F.S. in the UK now exceeds 1.5 million cases, yet that is not reflected in public discourse, political rhetoric (of all relevant Departments), or in the level of research funding allocation.

Unfortunately, despite the scale of this issue, current policies and initiatives do not appear to reflect the urgency required. Existing support structures are insufficient or inappropriate, and groups working to address the needs of people with ME/CFS do not seem to have the resources or attention needed to address the full scope of the problem.

From an economic standpoint, this issue should be particularly concerning to the Government. Research has shown that 75% of individuals with ME/CFS are physically unable to “push through” their symptoms to remain in or return to employment. As you know, the Government has repeatedly emphasised the importance of growing the economy, but the continued inability of many working-age people to participate in the workforce contradicts this narrative. These individuals who, to use political language, once contributed to the economy, are now sidelined by a debilitating condition that severely impacts their capacity to work.

It is also important to note that, while the recording of COVID-19 cases has significantly decreased, there is anecdotal evidence that many are being infected or reinfected with COVID19 all-year-round. Wastewater monitoring data suggests that COVID-19 is still present in communities across the country, meaning that the number of individuals who may develop ME/CFS is likely to continue rising at pace. To use the US as an example, on 6th January 2025, 1 in 49 Americans had COVID19 (6,860,000 new weekly infections), this rate is higher than it has been for 83% of the pandemic (ii). To reiterate, 4.7% of these people will go on to develop ME/CFS. The COVID19 infection rate, due to lack of mitigations, will be similar in the UK. This highlights the need for urgent investment in ME/CFS research and a comprehensive policy response.

We strongly urge you to advocate for mitigations against COVID19 in public buildings including hospitals, and increased funding for ME/CFS biomedical research. Equitable investment in this area is critical to providing those affected with the hope and opportunity to return to or remain in employment, and to ensure they are not left behind in the Government’s broader economic growth agenda. We would suggest the ME/CFS research funding allocation per person should be on a par with Multiple Sclerosis and Parkinson’s Disease, comparable diseases.

Thank you for your time and consideration. We hope that you will recognise the urgency of this issue and take swift action to support those affected by ME/CFS.

This letter has also been sent to the Secretary of State for Health and Social Care as the issue overlaps both Departments.

Yours sincerely,

Sally Callow

Managing Director 

References 

i. Vernon S.D. PhD, et al. Incidence and Prevalence of Post-COVID19 Myalgic Encephalomyelitis: A Report from the Observational RECOVER-Adult Study, Journal of General Internal Medicine, 13 January 2025. 

ii. Pandemic Mitigation Collaborative – https://www.pmc19.com/ 

Response from Department for Health and Social Care

9 May 2025

Dear Ms Callow,
Thank you for your correspondence of 20 January about myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) and COVID-19 guidance. I apologise for the delay in replying.
I appreciate your concerns.
We are committed to taking a comprehensive and compassionate approach to supporting individuals with ME/CFS, recognising the unique challenges this condition presents. Every patient deserves to have their condition understood and treated appropriately.
I would like to assure you that the Government is committed to better care and support for people living with long-term conditions, including ME/CFS. We want a society where everyone receives high-quality, compassionate care that also supports their families and carers. We will change the NHS so that it becomes not just a ‘sickness service’, but able to
prevent ill health in the first place. This will help us to be better prepared and allow
services to focus more on the management of chronic, long-term conditions, including ME/CFS.
We know that care for people with ME/CFS has varied widely and, in the worst cases, has left some people feeling that their illness is not recognised by the health and care system. We know that improvements in research and services and a better understanding of the condition have the potential to greatly improve the quality of life of people with ME/CFS.
The Department published an ME/CFS interim delivery plan in August 2023, alongside a public consultation that closed in October 2023. At the end of 2024, we published a summary of the responses to that consultation, which can be found at

www.gov.uk/government/consultations/improving-the-experiences-of-people-with-mecfs-
interim-delivery-plan.

The responses to the consultation, along with continued close engagement with stakeholders, will inform the development of the final ME/CFS delivery plan, which we aim to publish by the end of June. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.
We have listened to ME/CFS stakeholders and allowed for more time to develop the plan, to help ensure that we can be as ambitious as possible to make the greatest impact for those living with the condition. Providing more time for development will also enable the final delivery plan to align more closely with wider related Government strategies, such as the forthcoming ten-year health plan. The extension to the publication timeline will allow vital further engagement with the ME/CFS Task and Finish Group and those across Government and beyond who are responsible for actions in the final delivery plan. Through
this engagement, we will further consider and develop new and stronger actions to deliver meaningful change for the ME/CFS community.
The Government is committed to funding high-quality research to understand the causes and treatment of ME/CFS and is looking at the next steps for such research. The Department funds research through the National Institute for Health and Care Research
(NIHR) and welcomes funding applications for research into any aspect of human health, including ME/CFS. It is not usual practice to ring-fence funds for expenditure on particular topics – research proposals in all areas compete for the funding available. Applications are subject to peer review and judged in open competition, with awards being made based on
the importance of the topic to patients and health and care services, value for money and scientific quality. In all disease areas, the amount of funding depends on the volume and quality of scientific activity.
The NIHR and the Medical Research Council remain committed to funding high-quality research to understand the causes, consequences and treatment of ME/CFS, and are exploring the next steps for stimulating further research in this area. The NIHR provides funding to support the recruitment of participants to studies and welcomes the opportunity to collaborate with partners, including patient representative groups and industry.
With regard to funding for ME/CFS services, NHS England is responsible for allocating funding to integrated care boards, which in turn are responsible for commissioning specialist ME/CFS services that meet the needs of their population, subject to local
prioritisation. Regarding COVID-19 guidance, the UK Health Security Agency (UKHSA) has issued guidance for the public on living safely with respiratory infections, including COVID-19; this is available at www.gov.uk/guidance/people-with-symptoms-of-a-respiratory-infection- including-covid-19. It provides advice on actions that we can all take to reduce the risk of catching COVID-19 and passing it on to others, including encouraging regular hand- washing or sanitising throughout the day.

The UKHSA has also issued guidance for workplaces, Reducing the spread of respiratory  infections, including COVID-19, in the workplace, which is available at www.gov.uk/guidance/reducing-the-spread-of-respiratory-infections-including-covid-19-in-
the-workplace. There is no longer a requirement for all employers to explicitly consider COVID-19 in their statutory health and safety risk assessments; however, the guidance does advise what actions employers can take to reduce the spread of respiratory
infections, including maintaining a clean workplace. The UKHSA continues to issue proportionate reminders of its advice through media and  social media channels to encourage actions we can all take to reduce the spread of respiratory infections.
I hope this reply is helpful.
Yours sincerely,

ASHLEY DALTON

We do not believe our concerns have been addressed by Ashley Dalton MP, in fact we have received many of these copy and paste response paragraphs before from the DHSC. It’s ironic that she mentions preventing illness but cannot see that COVID19 is causing an exponential rise in cases of M.E./C.F.S. She makes no mention of air filtration or other measures that could be advocated for at a Government level. As this blog is being written there are reports of the latest COVID19 wave overwhelming hospitals in China and a large wave starting to cause problems in the US. This wave will hit the UK in the coming days or weeks, this will mean yet another big increase in M.E./C.F.S. case numbers. Whilst the Government may not be collecting data on either COVID19 or M.E./C.F.S., this problem is growing and becoming harder to ignore with each day that passes.

The issues flagged in this correspondence remain a work in progress.