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Sexism and science in the ME community
I can report from my own experience and observation that sexism is alive and well in the international ME community. Given that this is a patient cohort which consists largely (though not exclusively) of women, that is particularly disappointing. Reported ratios vary but common estimates suggest that somewhere between 65% – 80% of ME patients are female. However, my perception is that this gender ratio is not properly reflected amongst the higher profile advocates and activists in the community.
This is only a broad generalisation based on my own subjective observations but, however unpopular it may be, I suspect there are others who may recognise this pattern.
Quite apart from the distressing nature of the treatment experienced by some women (probably as a result of unconscious bias rather than anything more sinister), there is another serious point here. The predominant focus of many male advocates/activists is to expand and improve on the scientific research targeted directly at solving the illness. Obviously, the only way through which we will establish causation, biomarkers and treatment for the illness is by continuing to research them, so of course this is a vital aim. Nevertheless, on its own, science is not enough, as is already apparent.
As I’ve said before in “
Pause-Review-Reflect: towards a bigger picture“, we need to step back and consider the bigger picture of how best to address the reasons why we are so far behind other illnesses of similar controversy and/or vintage, such as multiple sclerosis or epilepsy. Scientific research is only one component of a much wider framework which requires the development of a political, medical and social context in which to flourish. This can only be realised through a customised and far-reaching strategy which faces squarely up to the reputational problems faced by this community.”
Edited version comment
Sticking my head up in a risky way, I think Valerie does have a point regarding advocacy which is difficult to articulate well but it does resonate, although I’m not sure if it’s equally age /length of service that’s taken the toll rather than gender. It’s true regarding male gender dominance at the top, Before the past few years and SC arriving at AFME, who herself has made no impact AFAIC, all the main groups MEA, AFME, 25% group, MERUK were led by men who’d been doing the role for years, the expert patients have been men and we have been led in the establishment by a quite advanced in years by man Holgate, slowly at it for years too. The approach to me seems to have been chip away, we will get there, through the respectable channels, in the end, notably different to the more bold aspirations in the USA eg Solve ME/CFS and End ME/CFS. ETA I notice others have disputed this and it’s true decades ago before my involvement there was Betty Dowsett and dr Anne macyntire but that is some time past. There is Jane Colby and i forgot about her, there is sue waddle in MERUK and there is countess of marr, although I think whist vocal on some issues she’s not necessarily a radical force and I don’t really recognise MJW or SC or CO as having been really trying to change the narrative in line with what the pwME want. So people can decide for themselves the balance.
I think VES is quite right to say that the main players in the Uk were essentially thinking science would sort and save. The former (male) medical adviser to AFME said on camera at a CMRC meeting, unchallenged, that as the research emerged it would change the landscape around care and decide who should medically look after us, and I think it’s right to say that some had essentially retreated into that position, that we were in a tough place and that it was going to have to be hung on research to change that, despite its slow pace. There hasn’t been, in the ten years I’ve been involved, campaigning on service provision whether against psychiatrists and OTs heading them (an eating disorder psychiatrist is filling dr Bansals place at Surrey) or waiting times, or severe provision, there hasn’t been any lobbying on research funds and theres not been any challenges on name, criteria, only really GET has seen a direct challenge. There was IMO not enough dynamism, no direct challenge to the establishment and crucially no mobilisation of the groaning masses, which was a mistake imo. This might be attributed to not enough female contributions or it might be that the youth is missing. Ultimately whether the conservative, establishment friendly style can be put down to gender is debateable
As Jonathan said it’s great the men have put themselves forward for representing us and there have been successes taking on the science side. It’s of note that one of the most radical actions past ten years was by Alem Matthews for taking on the PACE team but as a woman I’ve often been frustrated by certain things particularly groups heads just essentially running groups as their own projects and not including or delegating on things or mobilising the community and I’ve been frustrated for the approval not challenging the establishment instead “meekly” collaborating and just chipping away at improving the science. .
Spectacular revolutionary Jen brea is American and chiefly a global advocate after her uk unrest visit but She’s achieved more on aspects of narrative with more ambition in a couple of years than the same old was doing over years, partly because of refusing to accept the status quo, clever enough to use media and the community and connecting to the severe to create something moving.
We too now have carol Morgan and the excellent Scottish #MEAction lady too who’ve made strides in areas that weren’t being tackled head on eg changing the narrative from whining patients wanting their illness to be seen as “real” and controversy around that to that of patients demanding health equality as social justice issue and calling for research funds. Other Women abroad who in recent Times are engaging and proactive about changing the narrative are obviously carol head and the dr in Norway who lead the fantastic campaign against huge odds to get a Norway rituximab trial funded .
I think using media and social media to change the narrative is important and that’s only been available recently, #MEAction are filling that role. I see The ME association are looking to do more of that but I think that’s more about engaging the community in their work, than mobilising the community and there’s a big difference. Some believe patients should just leave it up to drs and charities to do all the liasing and represnting and advocacy but I don’t think thats worked.
I do think Uk advocacy until recently whilst patiently beavering away somewhat admirably, seemed based on a seemingly worn down establishment friendly
acquiescence and reluctance to try to look outside of the ways offered by the establishment (CMRC and modifying NICE), patient funded research (MEA & MERUK) and better self management (AFME) . This might be a result of repeatedly running into a concrete wall, gender, age, the type of people charities attracted or wanted involved or might be just personalities and inclinations who did get involved weren’t suited to doing more than a slow evolution based on collaboration with the establishment.
Outside the medical world, We have needed people to be innovative on social media, with a dynamic approach and deeply connected to the severe community to represent them, and that wasn’t there until recently. Men can be stereotypically more into to dry Facts, dry science and not engaging or acting on a human experiencele level which is why a gender balance can be much more preferable. Saying that Zache Nahle absolutely shone as an advocate on every level and I personally loved it when solve had him and carol at the helm. It’s arguable to those who’ve pointed out that AFME is now female led and not perfect, that they’re too lacking in science and detail and rigour but they also have had a strange perspective on moving forward and what the narrative should be that’s only starting to more align with ours eg on oxford criteria etc. Perhaps the female AFME and make MEA should merge and temper and improve each other. Controversial idea I’m sure. Apologies to their supporters who think they’re fine.
I personally don’t think it’s VES intention to offend or divide on gender (we do need all sorts, all types, all talents)
We need men and women, old and young, long term sufferers and fresh newbies, scientists, tech people and creatives so perhaps the general balance was out until recently and Also democracy wasn’t as evident before, it’s been and still is pretty top down, with a few individuals doing everything. But In charities top down is usually fine, ( it’s in justice campaigns it isn’t and we are both) and in a very multi divided area it’s perhaps inevitable that sick group leaders are protective about their work/groups direction and activity . I think it’s going to be patients and carers that change the narrative through #MEA as well as what’s going on officially with NICE and the science. I think there’s so much under used talent, that if encouraged to join forces, be vocal, visible and contribute could make it impossible for the world to continue ignoring ME and accepting totally dodgy narratives about us.
