**TW: Upsetting Content**
Its people are of all ages, ethnicities and classes. What unites them is a disease: all are diagnosed with myalgic encephalomyelitis, or ME.
By Prof. Chris Ponting
Extracts
We hide them there because we don’t know where else to put them. Like a plague village, we have no plans to treat them, to study their disease or to trial possible drugs for them. We could choose to draw up such plans, to give the residents hope for their future health. But our country’s choice is to turn away and forget about these 250,000-plus inhabitants altogether. A city the size of Brighton that we deliberately ignore.
Worse, when we don’t ignore them, we blame them, telling them that they are all free to rise from their beds and wheelchairs, to walk away from the city. Doctors tell them they can free themselves of the disease by changing their belief systems. Make the effort, they say, and you will regain your health and previous lives.
Outwardly, the city is quiet: its clocks have stopped, the streets are empty and house blinds are drawn. Inwardly, some lie still in their darkened rooms, masks on to protect them from their light sensitivity, keeping within their limited energy level, unable to tolerate sound, food and touch – lives spent in the shadows, barely lived. Inside, they feel like they have life-sapping toxins coursing through their veins. They say it feels like being on the verge of death; some even call it a “pseudo dying syndrome”.
A brief conversation with a friend, or washing their hair, or a sudden movement causes their symptoms to flare. This intensifies a fatigue that sleep cannot alleviate, and heightens their muscle or joint pain, headaches, or sensitivities to food, light or sound.
Quote from Simon McGrath:
Fatigue does not begin to describe this disease, despite its other name being chronic fatigue syndrome, or CFS. “A bad day is like a very bad hangover lasting 24 hours or more: the morning after, without the night before,” Simon explains. “But with much more pain, much more fatigue and very bad brain fog. I feel as if all the neurons in my skull have collapsed and disconnected from each other.” By spotlighting fatigue, ME’s other name fails to convey its many debilitating symptoms.
Treatment of ME has been called “the greatest medical scandal of the 21st century” by Guardian journalist George Monbiot. It is difficult to disagree when there is not a single bed anywhere in the UK set aside for treating people with severe ME.
The Times journalist, Sean O’Neill, says that ME is “routinely stigmatised and ignored by the NHS” and calls it “a scandal waiting for its Post Office moment”. O'Neill and his family had to endure the inquest into the death of his daughter, Maeve Boothby O’Neill, who died from natural causes because of severe ME.
Going back to Simon, ME made him housebound, then bedbound. The NHS treated him with therapies based on increasing activity levels (Graded Exercise Therapy, or GET). This involves “gradually increasing physical activity to improve fitness and get the body used to activity again”.
The other NHS treatment approach, Cognitive Behavioural Therapy (CBT), is about changing “illness beliefs”. Here, patients are asked to examine “how thoughts, behaviour and CFS/ME symptoms interact with each other”.
But these treatments are ineffective as cures. And worse still, for the majority of 11,000 people with ME on one survey, GET did more harm then good. In a different online survey, of 542 ME patients, 81% responded that their symptoms worsened because of GET treatment. National Institute for Health and Care Excellence guidelines, revised in 2021, say that CBT is not curative and that GET should not be offered to people with ME.
For two-and-a-half years our team went back-and-forth with the Medical Research Council MRC and the National Institute for Health and Care Research NIHR. Eventually, we managed to secure a £3.2m award for DecodeME, a hunt for ME’s genetic causes.
DecodeME is not just the world’s largest study of the genetic causes of ME, but it was the first to place people with experience of ME at its heart. A total of 27,000 people with ME in the UK took part. We will report the study’s results as soon as we can. When we do, we will give them back first to the ME community whose data and samples we hold in trust.
The UK government has pledged to publish its delivery plan on ME in 2025. Andrew Gwynne MP, parliamentary under-secretary of state at the Department of Health and Social Care, has said that it “will focus on boosting research, improving attitudes and education and bettering the lives of people with this debilitating disease”.
Further information
- Parliamentary Questions: Inpatient provision, hospital knowledge of NICE Guideline, and DHSC Delivery Plan on ME/CFS | 29 April 2024
- Parliamentary Questions: Hospital compliance with NICE Guideline on ME/CFS | 8 May 2024
- The Times publishes a letter regarding specialist ME care from the chair and vice-chair of the 2018-2021 NICE Guideline Committee | 3 October 2024
- Labour government commits to publishing the final delivery plan on ME/CFS | 7 August 2024
- Building an NHS that’s there for people with Long Covid and ME | 23 July 2024
- Decode ME