Last Sunday, the Observer published an article called, “Long Covid: Is This Now Me Forever?” that derides and stigmatizes both the long Covid and ME community as falling prey to a disease-mindset and catastrophic thinking. Just another hysterical women’s disease.
#MEAction sent the following letter to the editor at the Observer, asking them to remove the article, which is highly stigmatizing to both communities.
Dear Mr Webster,
We are writing to you today to raise our concerns about an article published in the Observer on 30 November 2020, written by Eleanor Morgan and entitled Long Covid: Is this me now forever? Ms Morgan repeated information that is outdated, incorrect, or not supported by current evidence, and perpetuated a long-standing culture of gaslighting people with ME/CFS, which she wrongly calls Chronic Fatigue Syndrome throughout the article. Having read the article, #MEAction UK argues that it falls below the usual ethical standards expected of the Observer, and that its ethical missteps are inseparable from its factual errors.
Amy Durant, who was interviewed for the piece, has subsequently described it as “very upsetting… and damaging to the long haulers community” and stated that Ms Morgan had framed long COVID and ME/CFS as just another hysterical woman’s disease,” pushing “outdated” and defunct ideas.
First, numerous studies show that support groups promote better mental health — yet Ms Morgan quotes an old canard that support groups “reinforce a ‘disease’ mindset”. There is no study that has provided evidence of the poor influence of support groups in people with ME. One study found that people in support groups tend to be more severely affected, and it is this association alone to which Ms Morgan refers. Susan Abbey, analysing this association stated that, “it may reflect more severely ill people seeking the support of other sufferers” (Abbey, 1993). In short, Ms Morgan’s article argues that those who are sickest and in most desperate need of support are wrong to seek it.
Ms Morgan also states that people with ME and long Covid push for “superfluous” testing. This is an opinion rather than a verifiable fact and with the addition of the phrase “catastrophic thinking” frames ME and long Covid as hysterical.
Ms Morgan states that ME/CFS is “often informed by a person’s underlying mental health and past experiences” and that there is “the well-established link between CFS and those who have experienced childhood trauma”. This purported link has been disproved in a recent study which stated that “Childhood trauma was not significantly associated ….. on level of fatigue or physical functioning. Additionally, ‘childhood trauma’ and ‘adverse events’ are almost solely discussed in diseases like ME, that predominantly affect women. Studies show that people with ME have emotional role functioning and mental health similar to healthy people, despite having diminished physical and cognitive abilities.
Ms Morgan ignores the fact that ME has been classified as a neurological disease by the World Health Organization since the 1960s. Multiple organisations, including the US Centers for Disease Control and Prevention and the National Academy of Medicine, have felt obliged to reiterate that it is neither a psychological nor a psychosomatic disease, The new draft NICE guideline on ME/CFS calls it a complex, chronic medical condition affecting multiple body systems.
Finally, please note that the ME community generally views the term “chronic fatigue syndrome” as stigmatizing and belittling, suggesting that a multi-system disease is simply a case of being overly tired. The National Institute for Care and Health Excellence refers to the disease as ME/CFS. Either ME or ME/CFS are acceptable terms for a national newspaper to use.
We ask that you either correct or remove the article, and ensure that the author engages with greater integrity with the chronically ill and disabled community in the future.
On behalf of #MEAction UK