ME (Myalgic Encephalomyelitis) – sometimes also known as Chronic Fatigue Syndrome (CFS) – is a serious illness that can be severe and even fatal, and yet research remains chronically underfunded despite the clear parallels with Long Covid that have been apparent for two years. It’s time to bring some hope to the millions worldwide who continue to suffer.
Back in April, Kelly Heath wrote an article for Central Bylines about her experience of long covid and how “long-covid may be very similar to other illnesses such as ME, but sadly people suffering with these conditions have also been long and much neglected in terms of research and treatment. In too many cases, they’ve been treated as though it’s all in their heads, a similar story for some long-covid patients.”
A personal story of ME
During the same summer of 2020 when Kelly caught Covid, in that brief respite between lockdowns, I met my friend Cat in the park opposite where she lives and we discussed the emerging obvious similarities between ME and Long Covid.
Now in her mid-forties, Cat began experiencing symptoms of ME following a bout of flu when she was 13. She has experienced exactly what Kelly described and more ever since: not believed, dismissed as a hypochondriac, offered treatments which made her worse. Cat has been refused further investigations because ‘It’s probably just your ME’ so other conditions were missed. “There’s nothing I can do for you” is another phrase Cat does not ever need to hear again.
That afternoon we speculated that what we are in fact seeing with Long Covid might come to be recognised as being a spike in new cases of ME due to a global pandemic of a novel virus. Awful as it is for those diagnosed with the condition, we thought, it may lead to long overdue greater investment into research, benefiting those with ME and Long Covid, worldwide.
“This almost flurry of research into long COVID contrasts with the experience of many with ME/CFS, who often have felt ignored or misunderstood by the medical profession. But for some, the interest in long COVID is an opportunity to learn more about the longer-term consequences of viral infections – which could, in time, also benefit people with ME/CFS.”
After having the flu Cat was never fully well again, although she did manage to complete school and university, the latter with help.
Initially misdiagnosed with anxiety, Cat got a GP diagnosis of ME at university, five years after initially becoming ill, but no specialist diagnosis or input until 15 years after first contracting it. By that point, she was already too ill to work, having pushed herself to do so for five years after leaving university.
Multiple relapses in the years that followed were caused by viral infections or simply overdoing it. Sometimes there was no obvious cause. Even though she ‘recovered’ from each one, every relapse left her worse than before. She stopped being able to work at the age of 28.
A combination of repeated relapses and post-exertional malaise, a primary feature of ME, means the amount she can do is progressively getting smaller.
She now spends on average 22 hours a day in bed – sometimes less; often more: “But if I stay in bed and never do anything”, Cat says, “my already-poor quality of life will reduce to zero and then, from my perspective, my life will literally not be worth living. So I have to play with that horrible balance and take that gamble every time, trying not to think about the possible consequences of visiting a friend for a few hours or going somewhere like the cinema.”
Covid has made things worse, especially since the lifting of all restrictions, including mandatory mask wearing, in March this year. Viruses are a major cause of relapse.
“I’m terrified of what a novel virus could do to me and the risk is higher now that people are not wearing masks. Because I don’t live alone so I can’t isolate properly, I’ve started doing a few things again (while wearing a mask and being as safe as possible) – because it would be a horrible irony to stay at home and do everything possible to protect myself and have it brought into my home anyway, thus losing out on whatever time I had left at my current level of health. I feel, like many others do, that I’m on borrowed time now no matter what I do, so I might as well try to enjoy some of it. Weirdly, that’s just a more acute version of what I’ve felt for years anyway with ME.”
ME research is underfunded and treatments are often unsuitable
ME research remains chronically underfunded, creating an environment where it was possible that Graded Exercise Therapy (GET), a treatment approach that was at best limited in its impact, and in fact was regularly shown to be harmful, “came to dominate ME/CFS for more than two decades.”.
GET, establishes a “baseline of achievable exercise or physical activity” and then makes “fixed incremental increases in the time spent being physically active”. Since October 2021 NICE guidance is clear: people with M.E. should not be offered GET.
Similarly, on Cognitive Behavioural Therapy (CBT), often offered alongside GET as potentially curative, NICE now make it clear that CBT “should only be offered to support people who live with ME/CFS to manage their symptoms, improve their functioning and reduce the distress associated with having a chronic illness” and only after thorough discussion of the possible benefits and possible risks. It should not be offered as a potential cure. The new NICE guidance has not closed down the issue, with some criticising the new guidance and others rebutting these criticisms.
It is long past time to bring some hope to the approximately 17 million people worldwide who continue to suffer.
According to Action for M.E. the condition affects an estimated 250,000 people in the UK, making it more common than H.I.V. and Multiple Sclerosis combined but receives less funding. Both these conditions obviously need continued substantial funding, but The ME Association says that “ME/CFS research in general is appallingly underfunded compared to other serious medical conditions”.
Governments must act but we as individuals can still make a difference by raising awareness, supporting loved ones with ME, and supporting organisations like Action for M.E. and the ME Association.