This is the second in three articles. You can read the first one here, and the third one will be out in a few hours.
The war continues…
As I discussed in the first article, there is currently a coordinated media war against chronically ill and disabled people who live with myalgic encephalomyelitis (ME, ME/CFS, chronic fatigue syndrome). This is because of patients and supporters’ objections to PACE trial – a study which defined treatment for them.
As I said in the first piece, the ME story has many threads to it. And one of them, detailed below, has far-reaching implications for people outside the ME community. It also shows why, in part, the media have waged this war. Because there’s a lot at risk if it loses.
Under the NHS, CBT and an “exercise plan” (which is GET, I’ve seen the consultations) is the recommended treatment for Fibromyalgia and Ehlers-Danlos syndromes (EDS). It’s probably applied to numerous other diseases and illnesses, too.
And it is this which forms part of a much wider agenda being pushed by the UK establishment.
Welfare “reforms” have been pushed by successive governments, most notably since 2008. The then Blairite New Labour government switched up things at the UK’s welfare (social security) agency, the Department for Work and Pensions (DWP). Not least, it introduced the Work Capability Assessment (WCA) for people claiming sickness-related payments. It was effectively saying that a doctor’s sick note was no longer enough to prove that people were entitled to disability and sickness-related welfare. The DWP wanted to check.
As I previously wrote for The Canary, the move was in response to the financial crisis. Blairite New Labour explicitly said so, but framed as if it was helping sick and disabled people. But in reality, it was a two fold approach.
Firstly, it was a way of reducing the welfare bill in line with bank bail-out-induced austerity. Secondly, in tandem with the burgeoning self-employment and ‘gig’ economy, it was part of a response to stave off recession; flooding the employment market with people who’d take any job going because the government had left them with no choice.
The election of the Conservative Party into coalition in 2010 took Labour’s agenda, and cruelly magnified it. It worked.
The betrayal of millions
Between October 2008 and July 2017, the DWP declared at least two million sick and disabled people ‘fit-for-work’. A further two million more withdrew their welfare claims. Millions of people, who previously may well have got sickness benefits, were suddenly magically cured by the DWP. It’s here where PACE trial comes in.
Take a medical trial, part funded by the DWP and conducted by some researchers with links to the private insurance industry.
Mix in an extra-political government agenda of reducing the welfare bill and pushing as many people into some kind of employment as possible (it’s called the Tories “Universal Credit“).
Add to this junk-science theories (PACE) that patients can ‘think themselves’ free of pain, and exercise to improve their symptoms.
Dollop in some media support via the SMC, plus an unquestioning NHS.
Throw in at least 250,000 ME patients, two million Fibromyalgia ones, an unclear number of EDS patients and probably other sick and disabled people along the way.
Force CBT and GET upon them.
Watch them accept it because many of them are the most deprived in society.
Tell all these people that if CBT and GET don’t work it’s their fault, or that their illnesses are ‘all in their heads’.
Tell the ones whose illnesses are ‘all in their heads’ that they’re not entitled to welfare. And tell the ones who are doing CBT and GET it’s proof they’re not that ill. So they’re not entitled to welfare, either.
What are you left with?
A corporatist capitalist’s wet dream. A decreased welfare bill, an increased cheap labour population and some smug ‘researchers’.
Or, as UK MP Carol Monaghan said, probably:
one of the biggest medical scandals of the 21st century.
So it continues
But don’t take my word for it. Because the UK government has got this part of its march to a dystopian future already sewn-up. Now, its moved [pdf, p43] onto its next target group: those living with mental health issues and musculoskeletal conditions and mental health issues.
We’re already seeing the DWP put work advisers into NHS talking therapy settings to get people in mental distress back to work. Or “psycho-compulsion” if you prefer. Last year, the NHS scrapped certain treatments for people living with some musculoskeletal conditions. And the DWP tried (but ultimately failed) to issue blanket guidelines to deny people living with mental health issues certain welfare payments.
But moreover, a certain Professor Wessley has just reviewed the UK government’s mental health laws. His recommendations include letting patients decide their treatments. In other words: ‘if you don’t get better it’s your fault’, or ‘you’re not really that ill, are you?’
The final knife to the heart? The DWP’s new, all-encompassing welfare payment Universal Credit. If you don’t know about it read my history lesson for The Canary here. But it’s essentially a policy to get everyone who can do the smallest amount of work possible, doing it. It’s a policy that’s been over a decade in the making and the linchpin to all of this.
Cui bono is Latin for “to whom is the benefit?” In the case of PACE trial, there are numerous recipients of all the evil benefits it brings. The government, junk scientists, gig employers and the stock markets to name a few.
But ultimately, there’s no ‘Illuminati’-style conspiracy, here. No single group of shadowy people are having secret meetings deciding all this. It is simply how our system works.
PACE: the thin end of the wedge
You have politicians who support the fundamental notion of capitalism that poverty is built in. They also support the idea of free markets, corporate globalisation and worshipping at those altars. So it is, of course, second nature and involuntary to them that poor, sick and disabled people are disposable; much like the thought processes behind sending people to war.
You have medical professionals like Sharpe and Wessley who are either one of two things: gullible fools, not realising exactly what their primary school science has done. Or, they are utterly complicit narcissists, knowing what they are doing is abusing and harming millions of people – but the glory (and paychecks) are too tempting for them to repent.
You have journalists who fit the above criteria. Or they’re just thick as pig shit. You have the SMC, pretty much in the same categories.
Then you have everyone else: the NHS GPs and consultants, the DWP staff, the charities. All so compliant, so servile, so forelock-tugging and so consumed by the system that they don’t even realise what they’re doing. ‘But I’ve got bills to pay! I can’t possibly rock the boat!’
Connect the dots
Trevor Butterworth, from US organisation Sense About Science (like the SMC but in the US) responded to a tweet I was tagged in, which was discussing the links (see my previous article) between journalists and the SMC. And I’m afraid his assertion is very wrong:
Because PACE, where it comes from and why it’s defended, is the same system, ideology and ultimate disregard for other human beings that defends Monsanto, that defends GM crops, that defends wars, poverty, climate change and everything else.
But ultimately with PACE, you have millions and millions of sick and disabled people. Ones like my girlfriend, who have been so abused and mistreated by the medical profession, the DWP and ultimately the system that she’s almost given up.
A privileged, warped reality
Sharpe doesn’t have to deal with her effective PTSD whenever she has to go to see any NHS professional who automatically presumes she is a ‘hypochondriac’, ‘suffering’ from poor mental health. Thanks in part to PACE trial she was sectioned (locked up in a mental institution) for nine days because everyone believed her illnesses were ‘all in her head’. They weren’t, and she was discharged without a mental health diagnosis.
Wessley doesn’t have to sit and listen to low-down-the-food-chain NHS neurologists tell you the best cure for ME is “psychotherapy”. Nor does he have to explain time and time again that yes, ‘we’ve tried CBT and GET and it made her worse’. After explaining what ME is in the first place, obviously. And getting past the it’s just “Yuppie Flu‘ prejudices.
Neither of these men have to comfort her when she crying her eyes out, day after day, because it’s all too much and she feels she can’t go on constantly fighting classism, both socially and medically. Which is, in essence, what much of PACE trial manifests as. I’ll discuss that in the third article.
Not that either of these men care. If they did, they would have admitted their corrupt, nefarious and down right cruel experiment at the expense of some of the sickest people in society was a sham, a farce and a fraud.
I doubt that will ever happen. So I and millions of missing people will remain “trolls”. Or rather, patients and their supporters who have suffered decades of abuse; the implications of which are almost unimaginably far-reaching.
In response to a comment from Trevor Butterworth, I am happy to include that Sense About Science and himself have been highly critical of PACE trial. Read more here.
The third article will be out shortly. You can read the first one here.
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Have you read ‘Thrive’ by Layard and Clark? It’s always good to know where these people are coming from. Apparently it was circulated to politicians of all parties before the 2015 election to try to ensure that whoever won was on board. You might need something sedating to take/imbibe while you’re reading it though. I got my copy second-hand, (no way was I going to give them any money).
Reblogged this on sdbast.
I think it’s a little unfair not to note that both I and my organization have been highly critical of PACE, and differ with the SMC on this, e.g.:
My point in that tweet was not to assert a position about IARC and all the other issues around GMOs, but that combining all these issues isn’t doing people suffering from ME/CFS any favors when there is legitimate disagreement on fundamentals.
I understand that people with ME/CFS have little reason to trust the medical and scientific establishment in the U.K., but the reality is that the defeats inflicted on PACE have come from patients and scientists using science. And that laser focus has meant that a proscribed treatment regimen has been questioned and, in many places, dropped across the globe. That is a hard-won and fantastic victory. And it’s a victory born of relentless focus.
There is a huge amount to do—and the wider context is how a models—namely the biopsyhosocial model—get reified into policy through economic needs. This is huge issue, in terms of the future of public health (and in your country the NHS). This needs allies in science, medicine, bioethics, and notably the sociology and philosophy of science who can add much clarity and critical power (I made earlier tweets on these points).
But you’re not going to get this if PACE, ME/CFS, and BPS starts bleeding into debates about GMOs and then… what— vaccines? (I’ve seen this online). I can tell you now that patient power is not going to win the scientific community to its cause if it becomes so diffuse in issue focus that it stops being careful about the science and simply becomes anti science. This charge has been the most powerful rhetorical weapon in the BPS camp. The ME/CFS movement’s strength is that it has—through the work of Tom Kindlon et al.—done knock out research *with* scientists by focusing on very clear, comprehensible problems in scientific methodology.
Matthew Bolton makes many excellent points on campaigning in “How to Resist,” but one in particular about the failure of Occupy London resonates with me. You have to focus in order to make someone responsible and be specific in order to see progress.
Thanks, Trevor. I have updated the article to add that you and SAS have been critical of PACE trial and have included a link.
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