When the government released the results of its Consultation on the draft Delivery Plan on ME/CFS on 19th December 2024 it disclosed that 3,338 responses were received –
- 47 were from organisations – including the views of ME Research UK
- 3,113 were from individuals sharing their personal views
- 53 were from individuals responding on behalf of someone else
- 125 were from individuals sharing their professional views
Such were the number of responses that the DHSC took over a year to analyse the results. Measured by strength of support, the number one priority in research was “ring-fencing funding, as well as securing more funding and parity of funding with other conditions” – and in Attitudes and Education, “updating resources” was number 6. Reporting the Consultation results however came with a caveat namely that the “… document summarises the consultation responses only and is not intended to announce new government actions on ME/CFS. and is not intended to announce new government actions on ME/CFS.”
Jo Platt MP tabled a parliamentary written question (UIN 29110) and the answer confirmed the reality of the government’s attitude to the disease. The newly appointed Parliamentary Under-Secretary for Health and Social Care (Ashley Dalton MP) was quite clear – despite neglect over decades, a 3 year engagement process, many meetings, workshops and sub groups, and results of a public consultation, no new money would be allocated to fund the Plan’s implementation.
Q – To ask the Secretary of State for Health and Social Care, whether his Department has plans to allocate additional funding towards the Government’s myalgic encephalomyelitis/chronic fatigue delivery plan.
A – There are currently no plans to allocate additional funding towards the myalgic encephalomyelitis / chronic fatigue (ME/CFS) final delivery plan. The ME/CFS final delivery plan continues to be developed.
The plan will focus on improving research, attitudes and education, and bettering the lives of people with this disease. The consultation responses, alongside continued stakeholder engagement via the ME/CFS Task and Finish Group, will inform the development of the final delivery plan for ME/CFS, which we aim to publish by the end of March 2025.
On every ground – from economic burden, disease prevalence, symptom burden, historic under-funding and just plain humanity – increased funding for research, education, healthcare provision and medical training is central to basic improvement in the lives of the many hundreds of thousands affected by ME/CFS. On 11th February 2025 ME Research UK raised the importance of political will in ME/CFS Delivery Plan process but now we know that such political will, such as there may have been at the beginning of the Plan process, has failed. The only hope is that a minister can make it clear to funding bodies that biomedical research into ME/CFS MUST be a priority (NIHR funding call actually uses term ‘Researching ME/CFS: priority area) and demand that action is taken within existing budgets to alleviate a problem that all agree has existed for decades and to the detriment to all.
As Helen Morgan MP wrote in The Times (18 February 2025)
The sickest lie in darkened rooms, sometimes unable to move, speak or even swallow. Those living with the most extreme forms of ME describe it as not a life but a bare existence.
