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Covid long-haulers are often women. Maybe it'll change the system's perspective on our pain.

The sheer volume of post-Covid patients may finally show the medical establishment that post-viral pain exists — as women have long been saying.
Image: Patient wheeled inside Mount Sinai Hospital during coronavirus disease (COVID-19) pandemic in New York
A patient is wheeled across a bridge connecting buildings inside Mount Sinai Hospital in New York City on Dec. 3.Mike Segar / Reuters

While more men have died of Covid-19 at time of writing, Frances Williams, a professor of genomic epidemiology at King's College London, says that preliminary data from the Covid Symptom Tracker app — which she helped develop — shows women are slightly more likely to suffer long-term effects following a Covid infection.

By way of contrast, in post-viral fatigue, women outnumber men two to one. In chronic fatigue syndrome (or myalgic encephalomyelitis), they make up 85 percent of patients.

Greystone Books

Early data coming from online Covid support groups certainly seems to mirror this — although this could change with time. This cohort appears to consist of patients who are relatively young and previously healthy, which is also the case with people who acquire CFS/ME.

As I have documented in "Pain and Prejudice: How the Medical System Ignores Women — and What We Can Do About It," CFS/ME is one of 10 overlapping chronic pain conditions that predominantly affect women; all suffer from stigmatization, lack of research and poor treatment offerings.

The worry is that, when these Covid-19 patients present to their health care practitioners complaining of long-term symptoms, they will be written off as anxious, lazy, hypochondriacal or hysterical. Certainly, the drastic changes happening to society as a result of Covid-19, compounded by severe economic distress that is likely to last well past the acute phase of the pandemic, are stressful and have the potential to trigger or exacerbate mental illness. It will be tempting for health practitioners to put all symptoms — especially those as general as fatigue, poor sleep, "brain fog," headaches and muscle pain — down to this stress.

The universal health care systems in the U.K., Australia and Canada will protect many people. But in the U.S., it’s a different story.

While depression and anxiety surely must be considered as part of a diagnosis (and indeed overlap with chronic pain and CFS/ME), it is equally as incumbent on doctors to be alert to CFS/ME and other chronic pain conditions as a possibility. "It's tough for women because traditionally they don't get taken as seriously by medical practitioners," Williams tells me. "Because of the overlap with depression, which undoubtedly exists, some people will put it all down to psychological problems."

"And that of course makes it worse," she said. "People think, 'Well, maybe I am going mad?' And all it requires is someone to sensitively give it a label, give it a diagnosis. Once you've got a diagnosis, you know what you're dealing with. Even if it's not perfectly clear — there's no obvious treatment, there's no drug to prescribe — but having a label is a big step towards managing it effectively."

Helene Fox, a Londoner who was recovering from surgery to remove endometriosis when she caught Covid in March 2020, found this out for herself after a battle with her general practitioner to be believed about her long-lasting Covid symptoms.

She told me that doctors kept "shutting [her] down" when she was explaining that her post-viral fatigue had lasted from March to July: "I don't know what you can do. There's not really anything they can prescribe you, but it just felt like I just wanted it on the record with my GP. But it was just 'OK, what are you doing to manage your stress?' It felt like suddenly I was in another state where I wasn't going to be taken seriously."

Preliminary data from the Covid Symptom Tracker app shows women are slightly more likely to suffer long-term effects following a Covid infection.

Helene had already spent years fighting similar dismissals over her endometriosis symptoms. She says doctor after doctor told her she was stressed and refused to believe she was in physical pain. Facing it again over post-viral fatigue felt infuriating.

Plus, she was at the added disadvantage — common among long-haulers — of not having a positive Covid test to show doctors. She had been told in early March that she could not be tested and to stay home and isolate. Now, that lack of testing could deprive her of proper treatment.

The universal health care systems in the U.K., Australia and Canada will protect many people, because they will still be able to access some treatment, with or without a test. But in the U.S., it's a different story.

Lack of a positive test result is certainly a major issue in the U.S. long-hauler support groups. One of the largest such groups is a Slack channel run by Body Politic with more than 14,000 members. It addressed the testing issue in its August 18, 2020, newsletter, outlining the array of barriers people without a positive test result face, despite widespread acceptance that diagnostic tests still lacked reliability at the time and testing was still difficult to access for some people — mainly already disadvantaged people.

While the U.K.'s Royal College of Occupational Therapists has released guidelines on managing post-viral fatigue after Covid-19, no American medical group had done similar by August 2020. Awareness of post-viral fatigue and CFS/ME was also boosted in the U.K. by the experience of Professor Paul Garner, the infectious disease specialist who has been publicly documenting his Covid-19 journey since May 2020.

Could it be that the voice of an expert male professor and a worldwide pandemic finally bring overdue attention to these debilitating conditions?

Whereas he was initially sure his condition was not post-viral fatigue, by June he had changed his tune, pointing out his symptoms felt very much like CFS/ME and calling for greater awareness and recognition of the condition. "Health services are largely institutionally prejudiced against people with chronic fatigue and ME, and in some cases these attitudes are framing the service response to Covid-19," Garner wrote in a blog post on The BMJ's website in June.

"Yet for us 'long-haulers' the symptoms are the same, the management schedules are the same, even if we don't quite fit the somewhat arbitrary definition of 'chronic' at 4 months."

Garner emphasized the scale of the problem: "A post-viral tsunami is hitting our health services right now, yet in the U.K. it doesn't even seem to be on the national agenda."

He concluded his post with a call for doctors to be more understanding and educate themselves about the condition. "This stuff is real. People are ill. Doctors need to stop diagnosing this as anxiety. We have messed up before, let's not do it again with long term Covid-19 illness."

In documenting the questioning of his own sanity, the frustration of being given poor advice and the stress of not knowing where his illness will lead, Garner has given voice to the millions of women and other people who suffer from CFS/ ME and chronic pain conditions.

Could it be that the voice of an expert male professor and a worldwide pandemic finally bring overdue attention to these debilitating conditions?

Excerpted from "Pain and Prejudice: How the Medical System Ignores Women — And What We Can Do About It," by Gabrielle Jackson. Now available from Greystone Books at Amazon and Bookshop. Excerpted with permission of the publisher.