ME: We need more funding and more research
Alastair Miller claims that there has been “years of well-funded research” into ME (“Maeve Boothby-O’Neill’s harrowing case highlights conflicting NHS narratives on ME”). We disagree. UK research funding for myalgic encephalomyelitis is arguably inadequate compared with its high symptom burden and compared with other diseases. From 2015-2020, just £6 million was committed to ME research funding through the National Institute for Health and Care Research and UK Research and Innovation, compared with £53 million for Parkinson’s disease and £22 million for multiple sclerosis.
Globally, there has been an increase in research funding for long Covid, including some investment in the UK. As Dr Miller points out, there is significant overlap between the two conditions. Yet this is far from enough to make up for 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 supported by 18 organisations, is calling for an NHS that is there for people with ME and long Covid. Our report, based on the experiences of over 300 people affected, highlights the need to harness the UK’s scientific and technological expertise to accelerate treatments.
Now, more than ever, we need to heed the words of Boothby-O’Neill: “My only hope lies in biomedical research, and adequate funding for this requires the medical community to abandon the false idea that behavioural therapies can cure ME.” Doctors rely on high-quality research studies for the evidence base on which good medicine rests.
Karen Hargrave And Emma Gore-LloydFounders of #ThereForME
Alastair Miller is right that the NHS should provide rapid access to multidisciplinary clinics where diagnosis can be confirmed and management guidance provided. This was recommended in the new (October 2021) Nice guidance on ME/CFS. However, some of the key recommendations on management, notably the removal of graded execution therapy, were opposed by the Royal College of Physicians.
About 25% of people with ME/CFS are severely affected – often resulting in constant pain, severely reduced mobility, hypersensitivity to light, sound and touch, and difficulty eating, swallowing and digesting food. At the most severe end of the spectrum is a group who are permanently bedridden and may require tube feeding to prevent life-threatening malnutrition – as was the case with Boothby-O’Neill.
The Nice guideline on ME/CFS provides clear recommendations on care and management at home and in hospital. Unfortunately, many healthcare professionals are not aware of this; a significant proportion of specialist referral clinics are still unable to provide a care and management service or plan for people with severe ME/CFS; and there are no longer any hospitals with dedicated medical units for people who need specialist clinical care. Health commissioners urgently need to review their specialist care for people with severe ME/CFS to ensure that it is in line with the Nice recommendations. If care is not provided at all, it can no longer be ignored. Otherwise, there will be more unnecessary deaths.
Doctor Charles ShepherdHonorary Medical Advisor, ME Association; Member, Nice Guideline Committee for ME/CFS
Gawcot, Bucks
Strictly speaking nice
I agree with Sonia Sodha that Strict needs a different format (“The perfect feel-good TV, has the sparkle of Strictly blinded it to the flaws in the format?”). The uptight, highly trained professionals need to be aware that this is a “fun” show, not a competition between other professionals, but amateurs daring to enter their world of gruelling training and performance.
Professionals should take into account a lack of stamina, and also the ability to learn. I worked in the NHS as a medical secretary and had some tough encounters with stressed doctors who expected support staff to have the same knowledge as they did. Fortunately I was experienced and old enough to stand up for myself.
Irene McWatt
Littlehampton, West Sussex
The time is ripe for polluters
Stewart Lee notes that there will be Nuremberg-style trials for the mass murder of all life on Earth (“The end is nigh. For insects, bats, protest, the planet…”). That will come sooner than he realises. The UK Youth Climate Coalition has a case at the International Criminal Court against BP, and the Climate Genocide Act Now has a case there against five leading British politicians. The legal profession is doing what it can to delay the inevitable, but justice is coming.
Jon Fuller
Westcliff-on-Sea, Essex
Abolish all prisons
I appreciated Eva Wiseman’s column on the urgent need to abolish prisons for the approximately 3,600 women in prison in the UK (“Women’s prisons have served their time. They should be abolished”).
I wondered, however, why she didn’t call for the abolition of men’s prisons. Although there are more violent offenders in men’s prisons than women’s, most men are there for non-violent offences. There were 92 suicides in prisons in the UK in the year to September 2023, 91 of which were men. This makes the suicide rate in men’s prisons almost four times higher than that of 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 to 73% of women.
During my medical training, I shadowed healthcare teams in women’s and men’s prisons. I was shocked by the horrible living conditions, the very high rates of mental illness, and the widespread violence and substance abuse. Women and men in prison deserve comfort, safety, and the chance to build better lives. Let’s end prisons and build better systems for everyone.
Doctor Charlie Wilkinson
Hotwells, Bristol
Discrimination is diverse
James Baldwin wrote eloquently and astutely about white American racism (“James Baldwin taught us that identities can help us locate ourselves. But they also trap us”). But he was less attuned to the forms of discrimination against others, including his own. It is often forgotten that Baldwin sometimes spoke condescendingly and ignorantly of Africans. It was not their color that offended him; it was what he saw—quite wrongly—as their lack of culture. Chinua Achebe criticized Baldwin’s ignorance of African culture, ancient and modern, while honoring Baldwin’s many critical contributions to American literature and life. We must be aware of the different ways in which racism and discrimination manifest themselves. Anti-African racism is not always based on color, but also on contempt for African culture and civilization, and disdain for their depth and diversity, let alone their existence and rich history. In this regard, we need to read Achebe alongside Baldwin and include African voices, uninfluenced 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 Children Eat or Not?’ Families in Keir Starmer’s Constituency Are Struggling with Poverty”). Despite your coverage of hunger, I have not seen an article that offers a solution. As a Sikh, I am well aware that a gurdwara offers free, hot, healthy meals to visitors throughout the day – all delivered by volunteers. Visitors are welcome regardless of religious affiliation, as long as they are respectful of the fact that they are in a holy place. Food banks are not the only place in this country where hunger can be alleviated.
Amritpal Singh Gill
London E7