80% of ME/CFS sufferers are female. It’s a disease that has affected many feminist women, including Phyllis Chesler and Susan Griffin. Both have written movingly about what ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) did to them, and how they had to adjust to living with it. And both have used their experience to make sense of it politically.
Susan Griffin described how the illness connected her with the material reality of her body, and with the plight of the living planet:
“The inner state that this virus produces is nearly impossible for others to grasp … One feels the world dying within one’s own skin … we are like the canaries brought into the mine to test the safety of the air for the miners ….The slow disappearance of capacities, sensations, energy, which is often, until one is desperately ill, invisible to others. A sense of grief which seems to well up from the very material of cells. Not only the clinical fact of toxicity, but a feeling of having been poisoned.”
(Susan Griffin, Canaries in the Mine, Inquiring Mind, Spring 1991)
Phyllis Chesler’s experience with ME/CFS showed her how the medical profession dismissed physical illnesses they couldn’t cure. She saw how their redefining it as being ‘all in the mind’ exacerbated the invisibility of ME/CFS to others:
“When I first explored sexist bias among mental-health professionals in Women and Madness in 1972, I did not realise that when western medicine does not understand and/or cannot cure an illness it first denies that the illness is real by saying it is merely a psychiatric disorder …. Patients were told they were exaggerating or imagining things. While I would like to believe that psyche and soma are one, I also know that viruses, parasites, bacteria, funguses, sexually transmitted diseases and toxic chemicals are real, and can also cause neurological and cognitive dysfunction.”
(Phyllis Chesler, The Mystery and Tragedy of Chronic Fatigue Syndrome, On the Issues, 31 May 1997)
Both Griffin and Chesler knew that ME/CFS was real. They were determined to minimise its interference with their valuable work, and to do whatever they could to recover.
Angela, my late wife, was in her 50s when she was struck down by a particularly severe form of ME/CFS. She was hospitalised for 3 months, then bedbound at home for five years, then housebound for ten years. She poured every ounce of the energy that she was able to access into painstakingly rebuilding her strength (via a treatment protocol sometimes called activity management, or pacing). She longed to return to her writing, but when, briefly in her 70s, she had recovered sufficiently to make this possible she chose not to focus on her illness. Instead, she concentrated on submitting consultation responses to the UK government and law associations in defence of women’s rights (opposing a proposed reform that would give legal backing to men self-identifying as women, and opposing another proposed reform that would commercialise surrogacy and enforce erasure of the mother/child bond).
Earlier, in the most severe phase of her illness, Angela had not been able to read or write. On better days, she was able to spend a few minutes listening to a letter from a friend, or hearing how another feminist was dealing with the illness. On worse days, even this was ruled out. When I learnt that Elaine Showalter, an avowed feminist, sided with psychologists who denied the material reality of ME/CFS, I thought it best not to let Angela know. I couldn’t risk the damage it might inflict on her recovery. (In 1997 Showalter’s book Hystories force teamed ME/CFS with alien abduction and satanic ritual abuse, and dismissed it as a modern form of hysteria. Her dismissal was based on little more than observations that medical scientists hadn’t been able to determine a single organic cause, and that a studio audience of sufferers had responded with anger when a doctor on a TV programme insisted that their ME/CFS was caused by depression).
Not ‘choosing that victim status’
If Angela had still been alive she would have been shocked to discover, earlier this year, that Meghan Murphy, a feminist whose insights she had appreciated, was using her X/twitter account to attack women with ME/CFS. Angela had learnt a lot from having Murphy’s articles uncovering the harms of gender ideology read to her. I cannot imagine how upset, and disappointed, she would have been to hear Murphy’s posts this January, questioning “Why is it that I have never in my life met a man claiming to have ‘chronic fatigue’”.
Murphy’s framing is so wrong. ME/CFS is real, so there’s no need for scare quotes, and there’s a lot more to it than chronic fatigue. She may not have met a man with ME/CFS, but she’s unlikely to have met anyone who has it in its severe form, as they would have been confined to their beds. It’s true that proportionately more women than men suffer from ME/CFS, but that doesn’t make it any less real. And it doesn't mean that no men have it.
It gets worse. Murphy’s “working theory” (based on no evidence) is that women are more likely than men to “enjoy being pitied or identifying as a victim’’. There’s no comprehension that the different incidence may reflect real differences between women’s and men’s bodies, or different experiences of trauma.
“I wish that women would stop reinforcing these stereotypes and take empowerment into their own hands a little more.”
(Meghan Murphy, X, 7 January 2024)
The outburst on X was not some temporary lapse of judgement, to be retracted when sober. Four days later Murphy dished out more of the same on her weeklyYouTube channel. She titled the episode Sickophants, and offered ‘How much fun is being sick!’ as a description. She explained that she had once felt tired all the time, and appeared to believe this was akin to ME/CFS. But she cured herself, by getting out, taking exercise, sleeping well, and eating meat every day. This, she said, was ‘empowering’ (I lost count of the number of times she repeated this word). Not said explicitly, but clearly believed, was an assumption that ME/CFS sufferers choose to be ill. “It is very empowering to heal yourself and make yourself feel better,” she boasted. “It feels awesome.”
Angela, and others we knew with severe ME/CFS, would have loved to be able to get out, exercise, and sleep well (though not necessarily to eat meat every day - they were more concerned to improve their gut microbiome diversity by eating a wide range of plant foods). But they were unable to move far from their beds, and attempts to exercise made their condition worse (something that even the NICE guideline now recognises). They did everything their bodies allowed them to do to get better. It took resilience, persistence, and a lot of time. They would not have experienced denying the reality of their condition as empowering. And they were not in any way choosing a victim status.
“The truth is it is easier to have an excuse … You can call it victim blaming if you want, but you’re the one who’s choosing that victim status.”
(Meghan Murphy, Sickophants, YouTube 11 January 2024).
Women, and men, with ME/CFS have come to expect dismissal from the psychologists who take money from the government to make out they are malingering, and from the doctors who still follow their advice. Angela would have been 84 years old this month. I’m glad she never had to experience this erasure being reinforced by a younger feminist she had respected.