Today I feel so much worse than I have for some weeks, dismayingly so. I’m worried. Mostly about friends and family but also the amount of unknowns. What does this mean if I get the virus? Will it push back my recovery, when I’d started to hope that I might be someone who recovered? Will it push it into the severe form, where you cannot get out of bed, or read, or even have the curtains open? This can last for years. The advice from the ME Association is do all you can to not get it. Thankfully I am lucky enough to feel safe and secure enough financially, to live in a village where I can go out with little risk, and a garden I love large enough for me to potter around (and a gardener to maintain what I no longer can). My husband works from home and is very caring. He has taken on virtually all chores and we have a weekly cleaner. I’m also well-practiced at ‘social isolation’, and socialise online, not only FB and Twitter and WhatsApp, but voice chat while gaming, and telephone calls, and Skype and many online tools that keep me in close contact with friends who I’ve known in many cases for years.
ME/CFS crashed through my life early last year and has changed it beyond my own recognition. For months I could only get out of bed and sit in a chair and doze, perhaps send one, two emails. Then sleep all afternoon. Sometimes I forced myself to do things, such as memorably going into London to the library, or for a meeting, which was a mistake. I was also anaemic (iron deficiency, and vitamin D) and my GPs had nothing to offer beyond iron tablets, antibiotics for recurrent infections, a diagnosis and several months of waiting to see a specialist (actually, this is among the best-case scenarios for CFS/ME). Rest and be patient, or exercise and lose weight I was told, depending on who I saw. It quickly became apparent that there was no real help on offer for the CFS/ME in any reasonable timescale so, with my PhD on hold, I tried between naps and dizziness, brain fog and flu-like fatigue to find and work my way through the medical literature. Instead of clear advice I found an enormous amount of very heated debate. This has been written extensively about online and in medical and scientific journals if you want to look it the exact details and form your own view as I’ve had to.
The crux of the debate is what are the underlying causes in the continuation of the disease, and connected to that, whether it is several conditions that produce similar symptoms. It is classified as a multi-system neurological disorder and its prevalence in women is at least double that of it in men, once factors like women being more likely to visit a doctor are added in. Its recent diagnosis and treatment have roots in psychiatry, and little to no attention has been given to its relationship to the history of women’s medicine, although it seems to have been once considered an organic disease called neurasthenia and predominantly diagnosed in white men of professional status.[i] It is presently considered “medically unexplained”, which is a euphemism for medically inexplicable, and a risk factor for having a medically unexplained conditions is being female or from a lower socio-economic background.[ii] So we’re part-way back to hysteria. Recent research has however been finding biological abnormalities, and links to auto-immune conditions, in particular Hashimoto’s thyroiditis. Auto-immune diseases are found much more frequently in women than men, which is probably because women’s immune systems differ to allow carriage of a pregnancy. The problem once again seems to be the relationship between medical models predicated on men, and insufficient knowledge about women’s bodies.
This scrappy research I’ve had to do is not like my PhD. I claim no expertise whatsoever in medicine. Humanities research training however is useful to me in dealing with such a contested area. Humanities focus on your own relationship to your research – what are your biases, perspectives, weaknesses – and shows that you have no neutral place to stand. In the absence of effective treatments or evidence for the underlying aetiology of the disease progression all I can really do is try to keep an open mind and find something that works for me.
There are only two ‘available’ (postcode lottery) treatments on the NHS –CBT and graded exercise therapy, neither of which are much help and in fact surveys by patient associations say they cause harm. Both assume that continuing CFS/ME is a perceptual problem and straightening out your faulty thinking will help. The idea of women being irrational, unreliable witnesses is such a trope that well, google it. The US CDC no longer recommends these treatments and defines CFS/ME as a neurological condition. A review of the NHS treatment recommendations is due at the end of the year. There is little other evidence for treatments such as various supplements, although there are some reasonably good studies, and research is now looking for a straightforward biological diagnostics and treatment. There isn’t enough research yet into these, most probably because huge quantities of research funding went on the funders assumption that it was largely made up in (female, low economic status) patients’ heads.
The absence of evidence being used to construct a model that doesn’t stand up under scrutiny chimes with my own research which considers how the absence of (much) evidence has been used to construct an absence of women in Roman military buildings. Archaeologists only find what they actually look for and have tended to dismiss or explain away evidence. Absence is then created. In the case of CFS/ME, now that medicine is starting to look more closely at the biological abnormalities that are found in patients, it seems likely a better understanding of the disease processes should emerge.
But this is CFS/ME and it’s tricky. The relationship of these researchers to their research has been negatively highlighted. Most of these clinicians and medical researchers have themselves CFS/ME and this is used to undermine their reliability as researchers. There can indeed be a desire to avoid the stigma – and consequences – of a diagnosis that involves the mind and mental health. On the other hand, much money has been spent, and reputations built, on research grounded on ME/CFS being a problem of the mind: this equally raises issues of cognitive bias, and conflicts of interest.[iii] [iv] In summarising the criticisms so briefly I’ve tried to take the people out of it, because some of the criticism has been outright and threatening abuse. In fact I’m not sure we have good mechanisms for handling abuse and reasonable criticism when it is all mixed up like this – other examples of this pattern seem to include MPs (including Jo Cox) and Mary Beard – with the abuse always seeming to follow particularly predictable and nasty lines such as misogyny, racism, antisemitism and the like. Abuse stops effective criticism and puts off researchers and then we all lose.
However, the relationship of the mind to the brain does seem pretty fundamental in a neurological condition, which is what CFS/ME does appear to be. There is no clear separation between the two, which is explored by Jo Marchant in ‘Cure: a journey into the science of mind over body’, primarily the placebo and nocebo effects. The one thing that she finds to be consistently important to survival rates and improved functioning in almost every type of illness is that “if we feel safe, cared for and in control – in a critical moment during injury or disease, or generally throughout our lives – we do better. We feel less pain, less fatigue, less sickness. Our immune system works with us instead of against us. Our bodies ease off on emergency defences and can focus on repair and growth.” It’s not only the drugs we need for this condition. The support I’ve had has a lot to do with why I am so much better. And it does fuck with your psyche; I used to see myself as semi-indestructable, unstoppable. I can’t any more.
When I started thinking about this blog, I was mostly thinking about myself, my research and how this fits with CFS/ME. Since then covid19 has torn holes in our lives and my concerns seem almost a useless thing to write and post. But I think that last thing is important. It’s the caring and focusing concern on other people that will improve our own survival rates and reduce post-viral complications such as CFS/ME. We’re all in the middle with this.
[i] http://www.simonwessely.com/Downloads/Other/OldWine.pdf
[ii] https://www.ncbi.nlm.nih.gov/pubmed/11448704
[iii] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC479220/pdf/jmedeth00004-0041.pdf
[iv] https://blogs.plos.org/absolutely-maybe/2019/02/08/consumer-contested-evidence-why-the-me-cfs-exercise-dispute-matters-so-much/
Dr. Claire Millington 