Observer Letters 04 August 2024
“Alastair Miller claims there have been “years of well-funded research” into ME (“Maeve Boothby-O’Neill’s harrowing case highlights clashing NHS narratives on ME”). We disagree. UK research funding for myalgic encephalomyelitis has been demonstrably insufficient compared with the high symptom burden and with other diseases. From 2015–2020, just £6m was committed in funding for ME research through the National Institute for Health and Care Research and UK Research and Innovation, compared with £53m for Parkinson’s disease and £22m for multiple sclerosis.
“There has been an increase worldwide in research funding for long Covid, including some investments in the UK. As Dr Miller points out, the two conditions overlap considerably. Yet this has been nowhere near sufficient to recover lost ground from decades of underfunding. Since 23 July, 1,400 patients and carers have signed our open letter calling for £100m annual funding for ME and long Covid biomedical research. #ThereForME, a patient and carer-led campaign backed by 18 organisations, is calling for an NHS that’s there for people with ME and long Covid. Our report, drawing on experiences from over 300 people affected, emphasises the need to leverage the UK’s science and technology expertise to accelerate treatments.
“Now, more than ever, we should heed Boothby-O’Neill’s words: “My only hope lies in biomedical research, and adequate funding for this requires the medical establishment to set aside the inaccurate idea that behavioural treatments can cure ME.” Doctors rely on high-quality research studies for the evidence base that good medicine depends on.”
Karen Hargrave and Emma Gore-Lloyd, Founders of #ThereForME
“Alastair Miller is correct to say that the NHS needs to provide rapid access to multidisciplinary clinics where diagnosis can be confirmed and guidance on management provided. This was recommended in the new (October 2021) Nice guideline on ME/CFS. However, some of the key recommendations on management, especially the removal of graded execise therapy, were opposed by the Royal College of Physicians.
“Around 25% of people with ME/CFS are severely affected – often resulting in constant pain, severely reduced mobility, hypersensitivity to light, sound and touch and problems with eating, swallowing and digestion of food. At the severest end of the spectrum are a group permanently bedbound who may require tube feeding to prevent life-threatening malnutrition – as was the case with Boothby-O’Neill.
“The NICE Guideline on ME/CFS contains clear recommendations on care and management in the home and in hospital. Sadly, many health professionals remain unaware of them; a significant proportion of specialist referral clinics are still not able to provide a care and management service or plan for those with severe ME/CFS; and there are no longer any hospitals with dedicated medical units for those who require specialist in-patient care.
“Health service commissioners must urgently review their specialist care of people with severe ME/CFS to make sure this is consistent with the Nice recommendations. Where no care at all is provided, this can no longer be ignored. Otherwise, there will be more unnecessary deaths.”
Dr Charles Shepherd, Hon Medical Adviser, The ME Association; member, NICE Guideline Committee on ME/CFS, Gawcot, Bucks