ME: we need more funding and more research

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, ME Association; member, Nice guideline committee on ME/CFS
Gawcot, Bucks

Strictly fun

I agree with Sonia Sodha that Strictly needs another format (“The perfect feelgood TV, did Strictly’s sparkle blind it to flaws in its format?”). The highly strung, well-trained professionals need to be aware this is a “fun” show, not a competition between other professionals but amateurs daring to enter their world of gruelling training and performances.

The professionals should make allowances for lack of stamina, as well as the ability to learn things. I worked in the NHS as a medical secretary and had a few sharp encounters with highly strung doctors who expected ancillary staff to have the same knowledge as them. It was fortunate that I was experienced and old enough to stand up for myself.
Irene McWatt
Littlehampton, West Sussex

Time’s up for polluters

Stewart Lee notes that Nuremberg-style trials will ensue due to the mass killing of all life on Earth (“The end is nigh. For insects, bats, protest, the planet…”). That will be sooner than he may realise. The UK Youth Climate Coalition has a case at the international criminal court against BP, and Climate Genocide Act Now has a case there against five senior UK politicians. The legal profession is doing what it can to stall the inevitable, but justice is coming.
Jon Fuller
Westcliff-on-Sea, Essex

Abolish all prisons

I appreciated Eva Wiseman’s column about the urgent need for prison abolition for the roughly 3,600 women in prison in the UK (“Women’s prisons have served their time. They should be abolished”).

However, I did wonder why she stopped short of calling for the abolition of men’s prisons. Although there are more violent offenders in men’s prisons than in women’s, the majority of men are there for non-violent offences. There were 92 suicides in prisons in the UK in the year to September 2023, of which 91 were men. This makes the suicide rate in men’s prisons nearly four times higher than men in the general population. Men are also cut off from their children, and children from their fathers. Only 38% of men were offered a phone call to their family on their first night in prison, compared with 73% of women.

During my medical training, I shadowed the healthcare teams in women’s and men’s prisons. I was shocked by the terrible living conditions, very high rates of mental ill health and pervasive violence and substance misuse. Women and men in prison deserve comfort, safety and the opportunity to build a better life. Let’s end prisons and build better systems for all.
Dr Charlie Wilkinson
Hotwells, Bristol

Discrimination is diverse

James Baldwin wrote eloquently and perceptively about white American racism (“James Baldwin taught us that identities can help us to locate ourselves. But they trap us too”). But he was less attuned to the forms of discrimination of others, including his own. It is often forgotten that Baldwin spoke at times in condescending and ignorant ways of Africans. It was not their colour that offended him; it was what he perceived – utterly wrongly – as their lack of culture. Chinua Achebe gently critiqued Baldwin’s ignorance of African culture, ancient and modern, even as he honoured Baldwin’s many critical contributions to American literature and life. We should be mindful of the diverse ways in which racism and discrimination manifest. Anti-African racism is not always based on colour but also on contempt for African culture and civilisation and disregard for their depth and diversity, let alone their existence and rich history. In that regard we must read Achebe alongside Baldwin and incorporate African voices unmediated by the American experience in our studies of racism and discrimination.
Dr Noam Schimmel
University of California, Berkeley

Hungry? I have a solution

James Tapper writes about children going hungry (“‘Will the kids eat or not?’ In Keir Starmer’s constituency, families struggle with poverty”). Despite your coverage of hunger, I have not seen an article offering a solution. As a Sikh, I am well aware that a gurdwara offers a free, hot and healthy meal throughout the day to visitors – all delivered by volunteers. Regardless of religious affiliation, visitors are welcome, so long as they are respectful that they are in a holy place. Food banks are not the only place to alleviate hunger in this country.
Amritpal Singh Gill
London E7