The UK is currently in the grip of Brexit. But amid this chaos, there is another, more sinister story brewing. It’s that of a group of chronically ill and disabled people, and the all out war against them being waged by medical professionals and the media.
This is the first of three stories. This part deals with the media. The second will deal with the ‘whys’ of the situation. The third will deal with the real-world implications for chronically ill and disabled people.
As I previously wrote for The Canary:
Myalgic encephalomyelitis, commonly referred to as ME, is a chronic systemic neuroimmune disease. It affects an estimated 17 million people worldwide and around 250,000 people in the UK. While symptoms vary for every person, people living with it often experience:
- A worsening of symptoms brought on by physical activities, mental activities, or both. Often referred to as post-exertional malaise.
- Flu-like symptoms.
- All-over pain.
- Sleep disturbance / problems.
- Cognitive impairments.
- Impairments of the body’s autonomic systems, such as nervous, digestive, and endocrine.
But ME has been fraught with controversy. For decades (and often still to this day), the medical profession has not properly recognised it. People living with ME have been disbelieved, stigmatised, given incorrect treatment, or told it’s ‘all in their heads’.
To be clear, within this piece ME is referred to as that, ME/CFS or chronic fatigue syndrome.
You can read my full body of work for The Canary on ME here.
So, this is the disease currently making the headlines.
Also making the news is the so-called “PACE trial”. Again, as I previously wrote for The Canary, the trial:
was a study into treatment for people living with ME. Its results claim that people living with ME can improve their illnesses, and sometimes recover, by having cognitive behavioural therapy (CBT) and by using graded exercise therapy (GET).
The results of the £5m trial, part-funded by the UK Department for Work and Pensions (DWP), were originally published in the Lancet in 2011. But they have been dismissed by many medical professionals and disabled people alike as damaging and ineffective. US government agencies have either downgraded the reliability of CBT and GET or removed them as recommended treatments altogether.
In the UK, CBT and GET are still the NHS’s approved treatments under guidelines from the National Institute for Health and Care Excellence (NICE). NICE is undertaking a review of this. But this has proved controversial. Because as ME Action UK reported, among the people sitting on the review committee are a co-author of the PACE Trial and other contentious medical professionals.
You can read my full body of work for The Canary on PACE trial here.
Now, over the past few days, there has been a flurry of stories around ME. And all of them are attacking people who oppose PACE trial.
The battle begins
It began with an article on Reuters about why one of the PACE trial researchers and main authors, Professor Michael Sharpe, was quitting his work on ME. It detailed how Sharpe and others were quitting due to being:
on the receiving end of a campaign to discredit their work…
Reuters contacted a dozen professors, doctors and researchers with experience of analysing or testing potential treatments for chronic fatigue syndrome. All said they had been the target of online harassment because activists objected to their findings. Only two had definite plans to continue researching treatments.
For me, this article was the beginning of a coordinated campaign against people opposed to the PACE trial. And it is being done by industry “shills”.
Enter the Science Media Centre
If you were wondering what I mean by shill, this may help:
‘Shilling’ for who, you may ask? The science and medical industries’ PR machine, the Science Media Centre (SMC).
It claims to be:
an independent press office helping to ensure that the public have access to the best scientific evidence and expertise through the news media when science hits the headlines
But in reality, this is not the case. Because it is actually little more than a corporate industry spin doctor, promoting the views of people who really don’t have the public’s best interests at heart.
$hilling for corporates
The author of the Reuters article Kate Kelland just happens to be quite involved with the SMC. Credit to Twitter user Carol L. Binks for pointing this out to me:
Kelland has been on board with PACE trial since 2011 – as this Reuters article shows. But she also has form.
She previously was involved in some controversy, over an article she did about chemical company Monsanto’s weedkiller and its trial in the US over its links to cancer. There were rumours she obtained vital documents from Monsanto directly. But for me, it’s also likely that the SMC had a hand in this, given they have been funded by Monsanto in the past and published analysis of the trial. Two out of the three scientists it quoted were effectively supportive of Monsanto, with one declaring a conflict of interest.
Then enter the UK fracking industry, and we have a similar scenario. Kelland pushing the safety to public health of the industry via Reuters on 31 October 2013; the same day the SMC were also promoting fracking.
If you want a double whammy, here’s another article by Kelland backing Monsanto, but with a pro-genetically modified (GM) crops thrust. This time it was specifically about Monsanto’s GM corn. And then you have the SMC also caught up in scandal over its pro-GM line – allegedly to help former UK Prime Minister David Cameron.
So, firstly we are seeing a broad kickback against criticism of PACE trial. This looks to me like it’s coordinated by the SMC. But we’re also seeing an all out war being waged in support of Sharpe.
$hilling for Michael Sharpe
Both the Times and the Daily Mail have published supportive [paywall] articles about Sharpe’s ‘troll drama’. And both papers’ parent companies have previously funded the SMC. Meanwhile the assistant editor of the Times sits on the SMC advisory committee.
In the Sunday Times, notorious columnist Rod Liddle wrote a piece [paywall] supportive of Sharpe and critical of the “ME lobby”. That’d be ‘patients’ to the rest of us. It was factually incorrect, littered with contempt and as amateurish as they come. But Liddle, like Kelland, has form, having written a supportive piece on PACE around the time it was released. He was previously editor of BBC Radio 4‘s Today programme, the BBC forcing his hand to leave in 2002. It’s unclear just why Liddle feels so strongly about PACE and Sharpe. But again, we’re back to the Sunday Times‘ parent company previously funding the SMC.
And then, as if by magic, Sharpe appeared on the Today programme on Monday 18 March:
People such as Dr Emma Reinhold noted that the interview was completely one-sided:
But as Stewart pointed out, the SMC admitted [pdf, p4] that it spoon fed (or “seeded” as it’s known in the industry) Tom Feilden, the science and environment editor for Today, a previous story. It wrote [pdf, p4] that Feilden:
won the UK Press Gazette’s first ever specialist science writing award for breaking the story the SMC gave him about the harassment and intimidation of researchers working on CFS/ME. The SMC had nominated him for the award.
Unsurprising, maybe, when you consider one former and one current senior BBC employees both sit as trustees of the SMC.
Also, the SMC included this statement [pdf, p8] in its 2017/18 accounts:
It did the same [pdf, p7] in 2016/17, although it referred to the “select groups or individuals” as “prejudiced”.
Further to this, Ed Sykes is SMC’s senior press manager and head of mental health and neuroscience. But he was [pdf, p10] also a “non-voting member of the advisory board” of the UK CFS/M.E Research Collaborative (CMRC), a group which historically supported [pdf, p5] PACE trial’s findings. Action for ME, part of CMRC, had been criticised for it’s partial support for PACE trial’s findings, then it’s slowness to keep up with the growing concerns over the trial.
To be fair to CMRC, last year SMC left [pdf, p4] its board and ended any involvement with it. Also, the CMRC recommitted to a biomedical focus on ME. So things there look hopeful.
But still, for me, the current media and medical storm over PACE trial, Sharpe and those critical of it is coordinated. And it’s being done, in no small part, by the SMC. It has blatantly seeded stories to Reuters, the Times, the Daily Mail and the BBC using preexisting contacts and/or it’s network of connections.
For example? This is writer/broadcaster Claire Fox tweeting praise of Sharpe’s appearance on Today programme:
Claire is the sister of Fiona Fox, the SMC’s chief executive. No, really. Then look at who’s been sharing Claire’s tweet. Mark Buckingham, for example – pharmaceutical giant Bayer’s “corporate engagement lead”. Bayer of course are current funders of the SMC.
Meanwhile, Oxford Psychiatry which also retweeted Claire’s tweet has Sharpe as a “principal investigator”.
See what’s happening here, yet? There’s no need for Russian bots. The SMC has a farm of real people acting like them all to itself.
A wider agenda
But why all this fuss? All this effort? Why all this BS?
It probably seems odd that much of the mainstream medical and media community seem so defensive of a trial, whose results have effectively banned in the US.
The situation with ME has many threads to it. Not least among these, in my opinion, is the notion that it is part of a wider pandemic of chronic illnesses worldwide. I’m convinced ME has its roots in virology/immunology. I am also certain it is catastrophically under-misdiagnosed. And I’m also convinced the degradation of our bodies via soil depletion, air pollution, poor diet and more is making humans more susceptible to diseases and illnesses than ever before.
This would be an uncomfortable truth for the corporate, globalised world. As it would throw into question the entire system, and how we structure our lives as a species and as a society. It would also add fuel to the fire over our collapsing, corporate capitalist system. So, diseases like ME are far better left ‘unexplained’. And sick and disabled people left on pharmaceutical painkillers and antidepressants. All that is for another article, though.
But for this thread of the ME story, PACE has implications far beyond people living with the disease.
The second and third articles on this will be published shortly.
If you like my work any gifts/donations to keep it going are gratefully accepted below. Thank you.
Michael Sharpe claims that he has stopped his research on CFS/ME and yet his St Cross College webpage lists them as his current interests. Maybe he has forgotten to update the page, or perhaps it’s that he wants people to know that he’s still interested in it/them, who knows? Whichever is true, I don’t think the recent news releases mentioned that he is Vice President of the EAPM – European Association of Psychosomatic Medicine – and (according to its website) President-elect of the Academy of Consultation-Liaison Psychiatry in the USA that used to be called the Academy of Psychosomatic Medicine. I suspect that both organizations view ME/CFS, or CFS at least, as a psychosomatic condition, although I stand to be corrected on this if they don’t.
NB Sharpe has said on occasion to the effect that ME is different from CFS, but produces papers with people who seem to think that they are the same thing. Confusing, huh?
I believe that Sharpe HAS moved on to working with the elderly and on cancer and long term conditions. (It looks like he stopped working on ME/CFS quite some time ago, so why the news report now, I wonder? It couldn’t have anything to do with him co-authoring a response, [that was published last week], to a paper that debunked the PACE Trial, could it?) All I can say is I pity the elderly, cancer sufferers and people with long term conditions, because this is all part of the same ploy to reduce costs in the NHS. That’s what ‘Liaison Psychiatry’ is all about. Advocates for it will claim that they are attending to the psychological needs of sick patients, but they are working to the same cost-cutting model that says that physical problems can be due to, or exacerbated by, psychological factors and that the answer to the NHS’s woes is cheap psychotherapy. ‘Integrated care’ strategies are promoted that include getting patients at outpatient appointments (for their physical health) to complete questionnaires about their mental health. You’d have thought that extra psychological care would cost the NHS more money wouldn’t you? But the Government has been sold a fanciful idea (by Lord Layard and David Clark) that this will cut costs overall. Now the NHS and people like Sharpe (who wrote a chapter on chronic fatigue in David Clark’s 1997 textbook on CBT), need to make that happen.
We know how ME patients are ignored by the NHS, no matter how much pain and distress they are in . How long will it be before patients who are concerned that their cancer might have returned are told that they are mistaken, that they’re just health anxious and need a short course of CBT to sort them out?
After 30+ years of M.E I have endured a breakdown in my marriage x 2, bullying by my employers constant pain,not to mention addiction to prescription drugs and a life time stolen by a so called non existent disease!!I shall be 70 in may and became ill after a severe bout of the flu..I used to enjoy running, swimming, horse riding amongst many outdoor pursuits.I have never been lazy but found myself trapped in a pain ridden body. After a severe shock caused by a fall I shortly after was diagnosed with Fybromyalgia. This pushed my pain to the extreme which in turn led me to becoming addicted to prescription opiates.I truly wish I would sleep and not have to wake up with another day of pain.I still try to remain hopeful for the sake of my family. Please stop arguing and find a proper cure I believe Cannabis oil would help me because I have limited relief from CBD oil.
Thanks for exposing this
Thanks for filling in the dots. Whyever isn’t the ME community doing a similar indirect PR seeding work via an independent scientific research pr body to help move the debate past pace and personalities onto all of the more recent good scientific research evidencing biomedical causes. The timing of this fight back can be no coincidence with the nice review underway.
Thank you for this brilliantly pulled together piece. Over thirty years of living with M.E. has finally led me to the same conclusions. There is no mystery illness here, just lack of proper attention and research. My diagnosis of M.E. came after ten years of ill health at exactly the point the CDC were engaged in a rapid cover up, including changing the name to CFS. The wall of silence and disinformation is still being perpetuated on both sides of the Atlantic, even in the face of exemplary research from many interested scientists.