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.
Helen Morgan MP – the Times
In ‘The Times‘ 18th Feb 2025 (free via sign-up) Helen Morgan MP summarises well in a short comment piece not only on the need for swift action on publication of the government’s Delivery Plan for ME/CFS but also challenges the government on both the Plan’s scope and its drive.
However, the call may already have been undermined as reports are (The Times – paywall) that the Delivery Plan will not be backed with additional financial resources for new services or for research. In a statement to parliament, Ashley Dalton MP as Parliamentary Under-Secretary (Department of Health and Social Care), commented “There are currently no plans to allocate additional funding towards the myalgic encephalomyelitis/chronic fatigue final delivery plan.”
If the Delivery Plan was, as Ms Morgan writes an ” … opportunity to move away from this legacy of neglect towards a transformation of care and research. However, it needs ambition, clear targets and resources to make a meaningful difference” then what will the rump of an under-whelming and under-resourced Delivery Plan achieve? The only hope is to persuade those charged with actioning the Plan to divert funds away from other priorities but this is unlikely to happpen if it is perceived that central government do not see the area as worthy of investment.
As Ms Morgan points out it has taken 33 months and five health secretaries to get to the stage where the Plan is reportedly ready for publication. People with ME, she wrote, now look to Ashley Dalton MP to provide much-needed reassurance that the plan will be a ministerial priority but the Parliamentary Under-Secretary (Department of Health and Social Care) may have shown just how low a priority ME really is within government circles.
And, specifically on ME research Ms Morgan stated that
Research funding is negligible. Over the past 12 years, the government has invested just £8 million in ME research. While the UK has committed strategic funding to dementia, motor neurone disease and mental health conditions, similar funding for ME has been considered an impossibility.
It will recalled that ME Research UK wrote only last week of the “Importance of political will in ME/CFS Delivery Plan process” and gave examples of when the government has provided ring-fenced funding for diseases. These being tellingly in areas where Ministers directed central funders to act. ME Research UK asked “….. does the new Minister have sufficient political weight and drive to make a real difference or will the Delivery Plan prove to be a further tombstone of ambition?” The answer, in the Delivery Plan sphere at least, now seems indicate the latter proposition.
The only hope is that post Delivery Plan political will can be applied to ‘persuade’ funding bodies to look at ME research once more, to accept that the passive Highlight Notice-based approach (NIHR funding call now uses term ‘Researching ME/CFS: priority area’) has failed, and to explore pro-active, collaborative ways to fund biomedical ME research to a degree commensurate with the disease’s symptom and prevalence burden.
