Tessa Munt MP has organised a letter from all 72 LibDem MPs to Wes Streeting MP, Secretary of State for Health and Social Care, expressing concern about the viability of the forthcoming delivery plan for combatting ME/CFS. Here is the text of the letter (see also photo above):

As World ME Day on Monday 12™ May approaches, we — all 72 LibDem MPs — write to raise our concern about a lack of funding for the forthcoming Final Delivery Plan for ME/CFS and to request a meeting to discuss this further.

Following the Covid pandemic, 1.3 million people in the UK are estimated to be living with Myalgic Encephalomyelitis (ME) or ME-like symptoms, with one in every two people with Long Covid meeting the diagnostic criteria. Women are disproportionately affected.

People with ME have one of the lowest qualities of life of any condition but have faced decades of insufficient care and minimal research funding. The sickest patients are bedridden in darkened rooms, sometimes unable to speak or swallow. There is as yet no cure and a lack of effective treatment. Yet despite this, over the past 12 years the Government has invested just £8 million in ME research. There is every reason why people affected by ME, including our constituents, feel left behind. Many patients and their carers now also face losing critical benefits which they rely on to live in dignity.

Whilst this Government has said that “in the worst cases” NHS care for ME/CFS has “left some people feeling that their illness is not recognised”, we believe this is a significant understatement. A 2023 public consultation made clear how the health system is failing people with ME with inappropriate attitudes, a lack of compassion, inaccessible care and poor implementation of NICE guidance. A recent ‘Prevention of Future Deaths Report’ termed care for the most severely affected ‘non-existent’.

Our inability to provide meaningful care for people with ME is harming our society as well as those directly affected. While the Government has recognised the “cost to health and care services and the wider economy through, for example loss of work and an increased benefits bill”, neither the DHSC nor DWP has a current estimate of that cost. The annual economic impact of ME was estimated at £3.3bn in 2014/15, based on a longstanding pre-pandemic estimate of 260,000 people affected. Following the pandemic, the number of people living with ME-like symptoms as a result of Long Covid has risen significantly. With this, and a decade of inflation, this figure will now be very much higher.

The Final Delivery Plan for ME/CFS is an opportunity to recognise the depth of previous failings and demonstrate this Government’s commitment to finding solutions. The Final Delivery Plan aims to boost research, improve attitudes and education, and better the lives of people with ME. None of these admirable goals will be achieved without ring-fenced funding.

(words lost in page transition) new approaches that show promise to strengthen the quality of care (for example, specialist community nursing and tech-enabled solutions). Beyond funding, it is critical that the Final Delivery Plan includes clear, measurable targets and indicators to enable accountability and monitoring of progress.

People with ME have experienced decades of promises. Now is the time for action. Thank you.