When Tom Morrison MP asked “The Secretary of State for Health and Social Care, if he will make an assessment of the potential impact of myalgic encephalomyelitis on the economy” the answer from Ashley Dalton MP Parliamentary Under-Secretary (Department of Health and Social Care) was wider than expected.
In responding to the question (UIN 40021) far greater insight was given as to the current progress on publication and implementation of the Delivery Plan for ME/CFS than the question asked.
The most illuminating points are where the DHSC reveals that
- The responses to the 2023 interim delivery plan consultation, along with continued close engagement with stakeholders, will inform the development of the final delivery plan. We have listened to key ME/CFS stakeholders to allow for more time to develop the plan and help ensure we can be as ambitious as possible across the three themes, to make the most impact for those living with ME/CFS. As such, we aim to publish the plan by the end of June. As well as boosting research, the plan will focus on improving attitudes and education, and bettering the lives of people with this debilitating disease.
- We intend to provide additional support to ME/CFS researchers to develop high quality funding applications and to access existing National Institute for Health and Care Research and Medical Research Council research funding. All research funding applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality. Our forthcoming ME/CFS delivery plan will outline the additional support we will offer to the research community to increase the volume and quality of applications and, therefore, increase the allocation of funding to this area.
ME Research UK has been involved in the reconstituted Task and Finish Group meetings to press for increased funding and a transformative approach to ME/CFS research. It would appear that across all three themes of the Delivery Plan that undisclosed and self-reported progress is being made to ensure the Plan is “as ambitious as possible.”
On research – no commitment to ring-fenced or increased funding is promised rather effort to be placed into giving support to ME/CFS researchers to develop high quality funding applications and to access existing competitive NIHR and MRC research funding streams. The hope being that additional support will lead to more and better applications which can/could/may lead to increased funding.
The sentiment is laudable but does it move things forward? It appears to commit to supporting researchers to make better and more applications to NIHR and MRC but then at the vagaries of the current system which has failed ME/CFS research for decades.
When ME Resaerch UK responded to the Delivery Plan Consultation it was pointed out that –
The interim delivery plan states that one of the reasons for the lack of research into ME/CFS is that “there is low capacity and capability among the research community to respond to research needs in this area”. While there is undoubtedly a lack of awareness of ME/CFS amongst researchers, the capability to conduct research into the disease is there; what is not there is dedicated funding to carry out high-quality biomedical research into ME/CFS and to encourage researchers into the field.
The plan sets out no strategies to keep established researchers in the field, and to help them build capacity through multidisciplinary collaboration, and no dedicated funding to encourage early career researchers to specialise in ME/CFS research (such as PhD studentships or postdoctoral fellowships – initiatives which ME Research UK has funded by individual donations).
There is and has been a now termed ‘Researching ME/CFS: priority area‘ Notice for over 20 years with little impact and Ministers have long blamed researchers for lack of ME/CFS research funding by NIHR and MRC – “The truth is — sometimes it is a hard and inconvenient truth to hear—there have not been good enough research proposals in the ME space, partly because of the stigma …….. and partly because of the division in the medical community.”
Is what is being formulated and trailed teh recipe for being “… as ambitious as possible”?
Answer in full –
We are committed to improving care and support for people with myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). We recognise how devastating the symptoms can be, and the significant impact they can have on patients and their families.
We intend to provide additional support to ME/CFS researchers to develop high quality funding applications and to access existing National Institute for Health and Care Research and Medical Research Council research funding. All research funding applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality. Our forthcoming ME/CFS delivery plan will outline the additional support we will offer to the research community to increase the volume and quality of applications and, therefore, increase the allocation of funding to this area.
While no specific assessment has been made of the impact of ME/CFS on the economy, we know that long-term conditions like ME/CFS not only impact negatively on patients and their loved ones, but also come at a cost to health and care services and the wider economy through, for example, loss of work and an increased benefits bill.
The content of the delivery plan has not yet been finalised. The responses to the 2023 interim delivery plan consultation, along with continued close engagement with stakeholders, will inform the development of the final delivery plan. We have listened to key ME/CFS stakeholders to allow for more time to develop the plan and help ensure we can be as ambitious as possible across the three themes, to make the most impact for those living with ME/CFS. As such, we aim to publish the plan by the end of June. As well as boosting research, the plan will focus on improving attitudes and education, and bettering the lives of people with this debilitating disease.
People with ME/CFS deserve the most appropriate treatment, and deserve to be confident that the National Health Service can offer that treatment. We recognise 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 more research, better services, and a better understanding of the condition all have the potential to make a huge difference in the quality of life of people with ME/CFS.
