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ME & Long COVIDWhen Will Our Exhausted Cries Be Heard?
Reverend Joe Haward shares his experiences of having ME and explores the challenges patients face in getting the reality of their lives with the disease heard by professionals and those in positions of power
On Friday 8 February 2019, I was rushed into hospital with a suspected stroke. The right side of my face had dropped and I was experiencing numbness in my right arm and leg.
A CT scan ruled out a bleed on the brain and eventually the doctor settled for a diagnosis of Bell’s Palsy. I had a course of steroids and was told that, because I was young, fit, and healthy, I’d be fine after two weeks of rest.
By the end of 2019, my body was bound up in constant pain and fatigue.
Last January, after further tests and appointments with a rheumatologist, I was diagnosed with Myalgic Encephalomyelitis (ME) – one of an estimated 260,000 people to have this condition in the UK.
My GP told me to do a little exercise every day, book myself in for Cognitive Behavioural Therapy (CBT), and gave me a leaflet and some painkillers. In March, I collapsed. Over the next three months, I struggled with any and every activity. The physical toll of ME was debilitating. Then, in July, I turned a corner and found myself able to return to a fairly normal way of life.
This year, in January, I collapsed again. I was on the bathroom floor for five hours unable to move, walk, and barely talk. Since that day, I have hardly left my bed; my body in a state of exhaustion and pain. For me, every activity comes with a cost. I’m 39 years old.
What is ME?
ME was classified as a neurological disease by the World Health Organisation in 1969. The International Consensus Primer describes it as a “complex, acquired multi-systemic disease” that results in faulty communication and interaction between the central nervous system and the body, “notably the immune and endocrine systems”.
It “is characterised by an inability to produce sufficient energy on demand… resulting in exhaustion, extreme weakness, exacerbation of symptoms, and a prolonged recovery period”.
People with ME suffer from post-exertional neuroimmune exhaustion (PENE). What this means is that anything that requires energy – having a shower, preparing dinner, talking on the phone, laughing – can result in a ‘crash’ and the exacerbation of all symptoms, often delayed 24-72 hours, and lasting days, weeks, or even longer.
Symptoms include, but are not limited to: short-term memory loss; widespread pain; fatigue; headaches; muscle fatigability and pain; poor coordination; flu-like symptoms; susceptibility to bacterial and viral infections; irritable bowel syndrome; dizziness, orthostatic intolerance; air hunger; and more.
Having lived with this disease, I can testify to all of these symptoms. It is brutal. Yet, for such a debilitating and disabling condition, there continues to be a lack of support, understanding, and research.
Divergence From Lived Experience
For decades, people suffering with ME have been dismissed and ridiculed, with the disease falsely labelled as ‘psychogenic’. Unable to be given a definitive organic diagnosis, too many patients have been told that it is merely psychosomatic.
For instance, an outbreak of ME at London’s Royal Free Hospital in 1955 was first attributed to ‘mass hysteria’ by two psychiatrists who never examined any of the patients. Sixty-five years later, and those of us suffering with ME are still prescribed Cognitive Behavioural Therapy. We are told that it is ‘all in our mind’ and what we need is to change the way that we think about our illness.
It cannot be stated enough: ME is a chronic, organic illness – not a major depressive disorder.
For people with ME, activity comes with a cost known as post-exertional malaise (PEM). However, NHS guidelines continue to offer Graded Exercise Therapy (GET) – where physical activity is gradually increased over time – as a treatment.
A study – ‘Pacing, Graded Activity, and Cognitive Behaviour Therapy: A Randomised Evaluation’ – is the reason why. The trial was funded by the UK Medical Research Council, the Department of Health and Social Care for England, the Scottish Chief Scientist’s Office, and the Department for Work and Pensions. At a cost of £5 million, it was the most expensive piece of research into ME (also known as CFS – Chronic Fatigue Syndrome) ever conducted. Recruitment through to data collection took nearly five years and was completed in January 2010.
The study’s main outcomes were published in the Lancet medical journal in 2011, stating that both GET and CBT helped “moderately improve outcomes” for patients with ME/CFS.
But, evidence of flaws in the trial began to emerge, as well as concerns over its “robustness”. Alongside this, patient advocates were deeply alarmed by the study’s claims because of their own lived experiences. A variety of surveys conducted by patient charities have found that GET increased the disease’s symptoms.
The National Institute for Health and Care Excellence updated its draft guidelines at the end of 2020, stating that “because of the harms reported by people with ME/CFS, as well as the committee’s own experience of the effects when people exceed their energy limits… Graded Exercise Therapy (GET) should not be offered for the treatment of ME/CFS… The draft guideline also emphasises that Cognitive Behavioural Therapy (CBT) is not a treatment or cure for ME/CFS”.
An Approaching Health Tsunami
The Government’s mishandling of the Coronavirus pandemic has left more than 130,000 people dead and many thousands more, including 80,000 children, with Long COVID – an illness that often shares many similarities with ME.
ME patients are looking at the healthcare tsunami Long COVID is bringing, and we weep – because we know what’s coming.
COVID long-haulers are sharing their stories on social media and in support groups, telling the world that their lives are no longer the same. And, like the ME community, they are being told by some in the medical profession that it is anxiety or stress, that their tests appear normal and they should go home.
Those of us living with these chronic illnesses are calling out for support; for the Government to dramatically increase investment into research and treatments; to recognise the reality of patients’ lived experience.
Funding for biomedical research and education into ME, with the knowledge and exposure that would bring, is vital as there has been no such major investment for decades. Instead, well-funded but flawed psychiatric research has dominated, leaving a trail of broken ME patients in its wake.
How much longer before those in power listen to our exhausted cries?