Within the online chronic illness community, discussions episodically arise as to why the UK press and wider media continue to stay silent on the nefarious politics driving the neglect of chronic illness such as ME/CFS and, increasingly, long Covid.
Most of the original work exposing these (largely UK-centric) politics in other knowledge-producing spheres has been produced by chronically ill and disabled people. Could ableism be part of what is driving the silence of the UK press? Whilst likely a contributing factor, this blogpost will demonstrate that people with diverse social positionalities have, over the years, detailed the web of morally void allegiances and self-interest that drives such politics and neglect - with apparently no interest whatsoever from the UK press.
Since this subject has been so well documented (by most knowledge producing arenas other than the media), a necessarily selective summary follows. (Readers who are familiar with this twisted tale may wish to jump ahead to the section entitled 'Free speech?')
The elephant in the (news)room
The ever-growing elephant residing in newsrooms across the country (arguably, across much of the globe) is that the neglect of conditions such as ME/CFS – and increasingly long Covid - can be traced back to the interests of academic-clinicians (largely, UK psychiatrists), together with their associates in the income protection insurance industry and government, all of whom claim to work in the best interests of disabled people. Here, ‘best interests’ transpire to be depriving disabled people of a financial safety net through taking away state support, denying them basic social accommodations and appropriate biomedical care, whilst forcing them to undertake harmful psychosocial ‘rehabilitative’ healthcare interventions and exposing them to psycho-coercion masquerading as welfare-to-work policies.
In other words, by re-positioning a medical condition as ‘psychosocial’ (allegedly caused by a person’s maladaptive psychology, and therefore amenable to psychosocial ‘healthcare’), eligibility to long-term benefits and private income protection is precluded, and the state saves on medical care.
These ‘best interests’ then are in fact the self-interests of a corporate, political and medical elite who are content to throw disabled people to the wolves (destitution, despair, early death and suicide) so long as their careers, egos and bank balances profit. For detailed analyses on the political backdrop to chronic illness more broadly, and ME/CFS more specifically, see examples here, here, here, here, here.
Similar political dynamics can be evidenced far beyond the UK, yet it could be argued that the UK has taken the lead in human rights violations and that UK health and social policy has become somewhat of a ‘model’ for other OECD countries. Whilst these agendas potentially impact all chronic illness, the target has historically been conditions that are clinically ‘contested’, since (oft politically induced) uncertainty creates a space where iniquitous political agendas are allowed to take centre stage. ME/CFS is perhaps the best example of this, a blueprint for the systematic social and epistemic marginalization of many other chronically ill and disabled patient groups under increasing austerity.
The entity now largely known as ME/CFS started out life as a relatively uncontested (bio)medical condition, classified by the World Health Organization as a neurological condition under the nomenclature ‘ME’ in the late 1960s. This entity later became re-positioned as an alleged psychosocial phenomenon under the name CFS, to be conflated as CFS/ME, by a number of academics (largely psychiatrists) for the above-mentioned political purposes. This re-positioning was aided by a strategic application of a (bio)psychosocial model, which was hijacked by the same academics, in allegiance with the disability insurance industry (notably Unum) and chums in UK government (see here, here, here). These agendas came to light in a spectacularly controversial way with the PACE trial. The many failings of this trial have been highlighted across knowledge-producing arenas far more than the politics that motivated it; however, for completeness, I include a brief overview here.
Funded partly by the UK Department of Work and Pensions (DWP), the PACE trial sought to prove that the researchers’ favoured interventions - cognitive behavioural therapy (CBT) and graded exercise therapy (GET) - were effective in ‘treating’ ME/CFS. ‘Sought to prove’ seems a fair representation; beyond numerous design problematics and the clear political agenda (get people off benefits, preclude income protection pay-outs and push people back into work), methodological jiggery pokery ensued when it became clear that the results were not going to meet researchers’ expectations. A special edition of the Journal of Health Psychology covers the ethical and methodological flaws in detail. For example, shifting of outcome measures after the start of the trial resulted in some participants meeting physical function and/or fatigue recovery threshold at baseline, meaning that they could be classed as ‘recovered’ at trial entry point. Re-analyses of PACE data using original (protocol-specified) procedures showed that moving the goalposts after play had started led to a substantial over-inflation of improvement and recovery rates (here, also see here). Rather ironically given the political agenda underpinning the trial, the interventions tested had little impact on claims for benefits, return to employment or healthcare use (see here and here).
It should be noted that most of the work in bringing this fraudulent project to light – and continuing to highlight the lack of evidence for CBT and GET for ME/CFS - was and is produced by chronically ill and disabled people living with ME, with support from allies within the academy (see further examples here, here, here, here, and here). This included a lengthy 5 year battle using Freedom of Information requests to gain access to trial data.
In February 2018, the PACE trial was discussed in UK parliament, where the Scottish National Party MP for Glasgow North West Carol Monaghan is famous for describing PACE and its surrounding politics as “one of the biggest medical scandals of the 21st century”. In fact, Monaghan hit the nail on the head when she commented: “One wonders why the DWP would fund such a trial, unless of course it was seen as a way of removing people from long-term benefits and reducing the welfare bill”. Whilst (albeit limited) UK press coverage of PACE's many failings exists, it is the broader political context, more precisely the historical web of allegiances and ideologies that motivated PACE and will continue to motivate disability denial, that the UK press continues to overlook.
You’d think the politics underpinning one of the biggest medical scandals of the 21st century would be the scoop of the century for an ethically minded investigative journalist. This, especially since (as most of us know only too well), Long Covid is now at risk of inheriting the landscapes long traversed by people with other politically charged diagnoses such as ME/CFS. And yet, for the last 15 years, when it comes to the politics that motivated PACE and that are killing off disabled folk, there seems to have been something of a media comms blackout. Why?
Free speech?
Maybe people with ME shouldn’t take the media silence too personally; it seems the UK press (with a few exceptions) does not discriminate when it comes to being complicit with the state-sponsored culling of disabled folk. In fact, with a few notable exceptions, the UK press has been silent on these politics - as they pertain to the entire disabled community - for over a decade. The tireless work of John Pring, editor of the Disability News Service is arguably the most notable exception here, alongside Steve Topple writing for Canary, whilst other journalists have made invaluable contributions in exposing the suffering of disabled people under austerity. However, as will become apparent, with the exception of Pring’s and Topple's journalism, the fundamental reasons for this suffering remain unreported.
Mo Stewart, Independent Disability Studies Researcher and research lead for the Preventable Harm Project (2009-2019), has written extensively about the demolition of the UK welfare state, and the impact on disabled people. Her writing includes a deep dive into the murky world of elite self-interest driving this demolition, including the burgeoning influence of Unum on UK government officials and thus UK social policy, the numerous morally dubious hats worn by the infamous Mansel Aylward, and the historical political backdrop from Thatcher’s administration onwards. Importantly, Stewart has also flagged up the silence of the UK press on these issues:
"Influential journalists such as Patrick Butler and Frances Ryan have regular columns in the Guardian, and they identify the ongoing preventable harm created by social policy reforms, yet they fail to acknowledge why it’s happening. Regular reports of the suffering, as reported by Butler (2015) and Ryan (2015), make for powerful press stories but fail to identify the reality of why the reforms were adopted, or the American corporate influence with DWP social policies since 1992 (Stewart 2015, 2016, 2017c, 2018a, 2019a, b, c). They say it’s not their job."
Reference: Stewart, M. (2019). Influences and consequences: The conclusion to the preventable harm project. Published by the Centre for Welfare Reform (Now Citizen Network Research).
As Stewart also points out in this article, the stance of Guardian journalists on this matter is particularly interesting given that the Guardian is where Jonathan Rutherford (a former professor at Middlesex University) wrote about the influence of Unum on social policy, way back in 2008. This, following his seminal academic paper in 2007. Given this apparent positive momentum, why the subsequent silence?
In trying to answer this question, I think it is highly relevant that Rutherford’s 2007 paper also linked UK welfare reform politics to the shenanigans of key players in the field of ME/CFS. Some of the players – once again, largely psychiatrists – are extremely powerful and influential people. Take Professor Sir Simon Wessely for example. Knighted for his ‘services to military healthcare and psychological medicine’ in 2013, former president of the Royal Society of Medicine and Royal College of Psychiatrists, appointed to chair of the Mental Health Act review in 2017, and now appointed to the board of NHS England as a non-executive director, this man’s ‘accolades’ go on and on. (Before enlightened readers start choking, the other side of the story behind some of these accolades is addressed here). Imagine the public response if details from Rutherford’s 2007 paper – not to mention all of the work produced since - made headlines in a national newspaper? It seems reasonable to speculate that those who have made a ‘success’ of their careers by profiting from dubious associations and abuse of power would be heavily invested in preventing the full story behind their success from coming out.
A little help from one’s comrades …
Before naysayers accuse me of conspiracy theory (and it wouldn’t be the first time), it was implied over a decade ago that influential members of the biopsychosocial cabal might have taken action to prevent their sordid interests coming to light in the UK press. In 2010, Professor Malcolm Hooper and Margaret Williams published Magical medicine: How to make a disease disappear, which details many of the unsavoury allegiances and agendas undergirding the neglect of ME (again,with no subsequent media interest). In this piece, the authors state:
"Editors of broadsheet newspapers have confirmed that editorial policy
will permit them only to publish items about ME/CFS that come from the
SMC."
Source: Hooper, M. & Williams, M. (2010). Magical medicine: How to make a disease disappear. (p.73)
The SMC is of course the Science Media Centre, formed in 2002, which exists partly to provide the UK media with science-related briefings, for example through publishing ‘expert’ reactions to high-profile scientific research papers that science journalists (who surely should be able to work it out for themselves?) then re-fashion into press reports. The SMC has known associations with influential biopsychosocial proponents: Wessely for example was for some time on the board of trustees and also served as a science advisor.
In the wake of the PACE trial, various media outlets appeared to seize upon the ‘results’, framing them as evidence that exercise and positive thinking could ‘treat’ or even ‘cure’ ME/CFS. It is highly likely that these stories were in fact informed by the SMC. As an example (and you might need a sick bag at the ready), archived SMC literature shows that Tom Feilden’s Radio 4 Today programme piece on the purported harassment and intimidation of ME/CFS researchers by patients was indeed informed by the SMC, who then nominated Feilden for an award (which he won). The same promotional literature also mentions how the SMC nominated Wessely for the Sense about Science John Maddox prize for Standing up to Science (this newly created award was allegedly for Wessely’s "courage and bravery for speaking out in the face of intimidation"). Predictably, Wessely won the award.
Fear of repercussions?
My reading of Hooper & Williams is that there likely was (and possibly remains) some form of enforced media censorship in this arena, though what legal foundation such censorship might have is questionable. Nevertheless, it might still be asked why a maverick journalist hasn’t taken it upon themselves to break ranks and get an exclusive scoop on this story. What is the worst that could happen? A recent piece by David J Black in Scottish Legal News might go some way to answering this question. Black begins by asking how Wessely, with his laundry list of disability denialist endeavours, could have risen to such an elevated position in what Black aptly refers to as our socio-medical order. Black then explores reasons for this in the remainder of the article. The following extract particularly stood out for me:
"Another critic [of Wessely] was Dr Margaret Cook, ex-wife of former foreign secretary Robin and a consultant haematologist, who wrote in her regular Scotsman column in 2003 that Wessely had been “central to the psychiatric perspective that ME does not exist at all, and that the related ‘Chronic Fatigue Syndrome’ is a mental condition best managed by a psychiatric therapeutic approach”. She claimed he had “downplayed the need for research into diagnostic markers and such is his influence that no state funding is forthcoming to support any other research than his own”. When Sir Simon threatened to sue, The Scotsman wimpishly sacked Dr Cook and deleted her article from its archive."
Source: Black, D.J. (2023). Cherchez la shrink. https://www.scottishlegal.com/articles/david-j-black-cherchez-la-shrink
Note: David J Black has also written on the politics of PACE and its broader context, examples here and here.
Here, the worst that could happen transpired to be sacking from a British national newspaper, deletion of work, and threat of legal action from an uber-influential knighted psychiatrist. If this was the punishment awaiting a rather well-connected columnist daring to speak truth to power, then it is perhaps unsurprising that other writers baulk at the prospect of befalling a similar fate.
Looking forward
So, what to do with this sorry state of affairs? A scandal of epic proportion, with nightmarish human rights implications, and a national press that looks the other way. As a multiply-marginalised woman, the only thing I can do is to continue to use my limited function to write on this subject when I am able, and to amplify others who write or otherwise raise awareness on this subject. I suggest others do the same if they are able, and I know and appreciate that many people have been doing this for years.
I have also spent a good portion of my time writing pitches on this subject for national newspapers, so far to no avail. Perhaps the above discussion suggests I am wasting my very limited and precious energy (and if the media suffers from the same androcentric and ableist bias as I've encountered in academia, I have no hope!). That said, the sheer numbers implicated in the emergence of long Covid, and the substantial social platforms of some of those affected, suggest that if ever the time was ripe for a ‘tipping’ in public consciousness - and for a UK press willing to play a facilitating role - that time is now.