A victory for ME sufferers could be a victory for women and those with Long Covid
NICE changes guidelines
At the beginning of summer, I went to see my female GP about long Covid symptoms.
Out of every 5-6 weeks, I would (and still do) lose three of them to fatigue, aches, sleeplessness, and brain fog. All I could do was lie on the couch. I'd had to drop a lot of my exercise, including my HIIT classes at F45.
It was in the middle of a 45-day fitness challenge, that I first had my fatigue crash. I was doing daily classes, and after three one week, on the fourth day, my resources seemed to have entirely run out.
I told my doctor that I was starting to do what I called progressive exercise this time around; NICE calls it graded exercise. I started a Couch-to-5k programme and was adding in various exercises during the week. I even tried to start up another F45 challenge.
I was hugely praised for this approach to exercise and told to continue.
It didn't work. I lasted two weeks until my reserves were all used up.
Today, it has been made official that the graded exercise approach is not necessarily the right one for people with myalgic encephalomyelitis (ME), which is also known as chronic fatigue syndrome (CFS), and not for similar syndromes such as Long Covid potentially.
The key symptom of ME is post-exertional malaise (PEM), which means that overexertion causes a serious flare of symptoms that in some cases can last months or even years.
After 14 years of recommending graded exercise therapy the National Institute for Health and Care Excellence (NICE) has removed this treatment from its new guideline on ME/CFS.
Over 250,000 people in England and Wales are estimated to have ME/CFS, and the latest data shows 1.1m sufferers of Long Covid in the UK (ONS 2021). "The guideline identifies the symptoms of ME/CFS as debilitating fatigue that is worsened by activity, post-exertional malaise, unrefreshing sleep or sleep disturbance, and cognitive difficulties (‘brain fog’)" (NICE, 2021).
Research on ME is said to be underfunded and unprioritised. Here's a clue as to why:
It is a syndrome that affects women 2.4 times more than men. It tends to develop for women in the mid-20s to mid-40s age bracket, which might is also the age range when the unpaid care burden is likely to be disproportionately placed on women.
Women, 25 to 44, have less leisure time of all. When you look at the differences in how much time people have by sex, women have less time than men. This result holds for data by employment type, region, work status, and income. Lower income households have less leisure time than the rest.
While "women’s leisure time was offset by unpaid work” but “for men, their leisure time seemed to be offset, by paid work or study rather than unpaid work” (ONS, 2015).
This is epitomised in academia by male authors acknowledging their female partners in their books for taking on household and family burdens while the men could write. It's a sexist cliché backed by data.
The effects of society’s gender divisions, were ultra compressed and magnified during the Covid pandemic. More women than men had to disproportionately increase their work load with the addition of homeschooling and caring for a family at home, while also working.
We’ve seen change in women’s roles over the last few decades. But some things haven’t changed as much as we are led to believe by popular culture and the media. Medical research prioritising women, is one of those things.
In the sitcom The Golden Girls, which ran in the 1980s/90s, there is a two-part special about the inability of the medical profession to diagnose these effects on the character Dorothy (older, low-income, female substitute teacher). She’s well-known for being the toughest of the ‘girls’ and in one episode is said to have made a police officer cry.
Dorothy: I don't know what to do. I just don't know. I was in front of the class and I couldn't talk. I was too tired to talk.
Not that they would have listened. They were too busy sniffing the whiteout they'd stolen from typing class. I had to excuse them early. I mean, I just cannot get rid of this flu. And it keeps getting worse, not better. But it's been months now.
Blanche: Maybe it's not the flu. Flu doesn't last that long. You ought to go back to Dr. Raymond.
Dorothy: I did, Blanche. He said I'm fine.
Blanche: Get a second opinion.
Rose: She did. She went to Dr. Schlesinger.
Blanche: Well, then, you are fine.
Ep. 5.1 Sick and Tired
The episode was written by the show's creator Susan Harris who had been eventually diagnosed with ME/CFS, which was later found to be an adrenal ailment (link).
"No one deserves that kind of treatment," Dorothy manages to tell the doctor who dismissed her. "I suspect had I been a man, I might have been taken a bit more seriously, and not told to go to a hairdresser.”
Thirty years on, there may be a little progress.
ME is serious. It has been identified as the cause of death for two British women and has also been linked to an increased risk of suicide (cited from Bitch Media).
The unequal treatment of women kills. The lack of medical funding for what are predominantly female ailments kills and causes a lot of suffering. It's not unique or a one-off. The lack of inclusion of women in science, society, work and care, has consequences (Invisible Women, Criado Perez, 2019).
Ultimately, capitalism’s arrangement of gender divisions in society through the patriarchy, kills. Some men, as we have seen, benefit in various ways, including more leisure time and the opportunity to pursue their own interests at the expense of women.
This change to the NICE treatment suggestions, away from graded exercise therapy, is a successful step for women, long Covid sufferers, and anyone who is affected by it.
The number of people being diagnosed with ME is increasing due to the recent COVID-19 pandemic, the similarities are striking and if a link is found it could be transformative. The sheer number of Long Covid sufferers could bring about a step change to how these symptoms are treated.
In parallel with ME, females are more likely to report Long Covid symptoms. It’s a syndrome that was also more common among those aged 35 to 69 years, living in the most deprived areas, working in health or social care, and those with another health condition or disability (ONS 2021).
NICE has now issued a new guideline that advises against any programme “that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy”. #MEAction UK -- an organisation of patients, carers and allies fighting for recognition and research for ME -- and other patient advocacy organisations across the world have been fighting for this removal for many years. Their hard work has paid off.
Rachel Elliott, whose daughter has very severe ME, describes her feelings on reading the guideline: “I am thrilled NICE has finally removed graded exercise therapy from the guideline. I am so relieved that other people with ME will be protected from being subjected to potentially devastating and lasting harm from this 'treatment' which caused my daughter to become severely affected. She remains bedbound 7 years later, and has been tube fed for the last 4 of these.”
Sian Leary, spokesperson for #MEAction UK, comments, “It’s appalling that so many have had to suffer for so long, but a relief that no new patients should suffer further because of discredited recommendations. That’s why spreading this news far and wide and getting the guideline into the hands of GPs is of paramount importance. We can prevent further damage if GPs know and understand this new guidance.”
My GP has been great. She previously diagnosed a serious vitamin D deficiency, which had also been debilitating for quite a few years. However, when she advised me to keep up with my graded exercise, she was following NICE guidelines that were not suitable.
We now know more. We can do better.