By David Tuller, DrPH
October is a crowdfunding month at University of California, Berkeley. If you’d like to support my work, you can make a donation to the university (tax-deductible for US taxpayers) here.
In the last few years, geneticist Chris Ponting, a professor at the University of Edinburgh, has become a leading researcher in the field of ME/CFS. He is the principal investigator of DecodeME, a large gene-wide association study funded with a major grant from the UK’s Medical Research Council. This week, he published a commentary in The Conversation, an online site that posts articles from academics seeking to write for a larger audience beyond those who read the peer-reviewed literature.
The headline–“Ignored, blamed, and sometimes left to die – a leading expert in ME explains the origins of a modern medical scandal”—pretty much sums it up. Professor Ponting’s article is an impassioned, heartfelt plea for greater understanding and awareness of the terrible plight of patients and the neglect that they have been subjected to by the health care and medical systems. He and I spoke earlier today about the friendship with a university mate that prompted his decision to focus on ME research, widespread misogyny in the medical profession, and related issues. (We had a bit of a time lag in the call, so occasionally we seem to be talking over each other.)
So what else links endometriosis with ME, other than that they’re both female-predominant diseases? Perhaps that they’ve both been treated by (at least) sections of the medical profession (the RCPsych and the RCGP in this case) as “functional somatic syndromes” -see Table 1 on page 6 here -https://www.slideshare.net/slideshow/guidance-for-commissioners-of-services-for-people-with-medically-unexplained-symptoms/71912851 . OK, so endometriosis isn’t listed, but “chronic pelvic pain” is, with its supposed symptoms of period pain, painful sex and pelvic pain. Yep, that’s endometriosis to a tee and I can say that with some experience. And let’s look at another “syndrome” in that offensive table – “non-cardiac chest pain” under “cardiology” and then take a look at this 2021 paper -https://www.sciencedirect.com/science/article/pii/S1470211824033694?via%3Dihub where, in the last paragraph of the second section, “non-cardiac chest pain” or NCCP is synonymized with cardiac syndrome X . So what is “cardiac syndrome X”? This -https://www.bhf.org.uk/informationsupport/heart-matters-magazine/medical/all-about-microvascular-angina#:~:text=Microvascular%20angina%20is%20caused%20by,known%20as%20cardiac%20syndrome%20X. explains that it is another term for microvascular angina, an under-diagnosed condition that affects women more than men, particularly menopausal women. That webpage preceded (by several years) the 2021 paper in the “Clinical Medicine” journal. How was that 2021 paper allowed to be published? How come its authors appear to have been so behind the times?
It would seem that “medically unexplained symptoms” are not more common in women -https://www.cambridge.org/core/journals/the-british-journal-of-psychiatry/article/frequent-attenders-with-medically-unexplained-symptoms-service-use-and-costs-in-secondary-care/4DAD09FCBD16CDFFD23CA945ED4C8CBB (see end of second paragraph in the discussion section of this 2002 paper) even though it has frequently been reported that being female is a risk factor e.g in this 2003 paper -https://journals.sagepub.com/doi/10.1177/014107680309600505 . (It’s worth people taking a much closer look at those papers and the role that higher consultation rates in women may play in creating that impression.) What seems likely though is that conditions with medically unexplained symptoms (or more difficult to explain symptoms) that affect women more than men – like ME, like endometriosis, like cardiac syndrome X, and like SLE, are being under-investigated, under-researched, under-diagnosed in some cases (e.g. -https://academic.oup.com/rheumap/article/4/1/rkaa006/5758274?login=false) and/or under-treated. In my view, that can only be described as medical misogyny.
Returning to my first comment suggesting that medical misogyny may encompass more than just ME and endometriosis, it seems that I’m not the only one to have concerns regarding the 2021 paper on functional cardiac symptoms. It prompted a response from 2 consultant cardiologists and a medical trainee (foundation level) – available to read here -https://www.researchgate.net/publication/350368994_A_further_explanation_for_chest_pain_without_visible_coronary_artery_disease/link/605bea9b92851cd8ce65e1ad/download?_tp=eyJjb250ZXh0Ijp7ImZpcnN0UGFnZSI6InB1YmxpY2F0aW9uIiwicGFnZSI6InB1YmxpY2F0aW9uIn19.
So who’s not keeping up?
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I happily trust with my life a bloke who is not so vain as to move the ironing board before a Zoom!
Thank you Chris and David for your dedication to our cause. It certainly isn’t for the money.
Looking forward to the pre-print.