The propaganda war on chronically ill and disabled people just went up a gear

Another week and the media dropped another heavy dose of propaganda against chronically ill and disabled people. Nothing new under the sun, I hear you cry. Except there is. Because this time it shows a clear, coordinated pattern emerging in this ongoing smearing of a whole community.

Groundbreaking research?

On Monday 29 April Stanford University in the US published new research into myalgic encephalomyelitis (ME).

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.
  • Hypersensitivity.

 

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 disbelievedstigmatised, given incorrect treatment, or told it’s ‘all in their heads’.

You can read my full body of work for The Canary on ME here and there’s also plenty of content on this website.

This is not a medical article, so I won’t go into the details of Stanford’s research – you can read about that here and here. But in short it could pave the way for a proper “marker” for ME – that is, proof the disease exists.

And when compared to current UK mainstream medical thinking, it is infinitely better.

PACE trial

Currently, the NHS’ approved treatment is based on 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 and on this website.

So, Stanford’s research, potentially showing that ME is a disease to which endless amounts of CBT and GET would be ineffective, is important. So important that a lot of the media reported on it. But three outlets in particular made a point of pouring as much scorn on the research as possible.

Pouring scorn…?

Reuters, the Sun and the Telegraph among others all covered the story. I note these three outlets specifically because each of their articles all had several common denominators. All of these point to the story coming, in part, from one source.

All quoted psychiatrist, president of the Royal Society of Medicine and government adviser Sir Simon Wessely. He was also involved in PACE trial and is an advocate of CBT and GET.

They all used parts, or all of, the same quote from him; that is:

There have been many previous attempts to find a specific biomarker for CFS. The problem is not differentiating patients with CFS from healthy controls. The issue is can any biomarker distinguish CFS patients from those with other fatiguing illnesses?

 

And second, is it measuring the cause, and not the consequence, of illness? This study does not provide any evidence that either has finally been achieved.

Both the Sun and the Telegraph quoted other medical ‘experts’ as well as Wessely. Reuters just used him alone, saying his quote came from an “emailed comment”.

All were published within three minutes of each other at around 8pm BST.

And they all went with calling the disease “chronic fatigue syndrome” and “CFS” first, ME second.

So, why were there many similarities in the stories? Because the source for them all was the same. It was the industry PR agency the Science Media Centre (SMC).

A coordinated smear…?

For example, the writers of the articles lifted all the ‘expert’ comments from Wessely and others directly from a press release by the SMC. Of note is that both Reuters and the Telegraph gave only negative comments from the SMC press release.

The Sun, by all accounts, almost gave the game away as to where the comments had come from by including a positive one from the SMC press release. Whoops!

It also leads with “chronic fatigue syndrome” and “CFS” first, and ME second. That, in my opinion, is a now standard tactic to lessen ME as a debilitating disease and keep it in the realms of the psychosomatic in the mind of the public. CFS already has social connotations – ‘Yuppie Flu’, for example.

The fact all three articles went out at 8pm, bar Reuters at 8:03pm, is another giveaway. The website PNAS published the research at 8pm UK time, with Stanford University tweeting its press release at 8:11pm.

That’s quite a remarkable turnaround time for Reuters, the Sun and the Telegraph to analyse complex research, get comments from ‘leading’ UK ‘experts’ and publish – all in a matter of seconds.

Except of course they didn’t do that.

The MSM/SMC strikes again!

The SMC would have had pre-release access to the Stanford paper. It would have gathered the quotes, sent those along with its analysis of the research to its contacts at every major media outlet, and waited for the ball to get rolling.

Stanford’s research was probably embargoed (that is, not allowed to be published until a certain hour) until 8pm UK time. Although I know for a fact PNAS accidentally published it earlier, at around 10:30am – and then promptly withdrew it. Accident or interesting? I’ll leave that up to you to decide.

So, as soon as that embargo lifted, Reuters, the Sun and the Telegraph had their complete pre-scripted articles ready to go.

I deal with embargoed press releases, research and announcements week in, week out. I know how this rolls. And it rolls exactly as above.

But here’s the thing. We’ve been here before with the SMC and ME.

The merry-go-round continues

Just last month, I wrote extensively about how the SMC was coordinating a media campaign in support of PACE trial author Professor Michael Sharpe and the trial, and against people living with ME, their advocates and campaigners.

Central to this was Reuters‘ Kate Kelland (author of the latest Stanford article, too), who has a history of publishing “seeded” stories for the SMC – from GMO crops to fracking. Meanwhile, it effectively admitted [pdf, p4] to such, and also that it would support professionals like Sharpe if they were under attack.

And so, with Stanford University publishing new positive research, the media merry-go-round continued. If you ask me, it has less to do with people living with ME and more to do with UK regulator NICE currently reviewing treatment guidelines for the disease. PACE trial has to be maintained, so best get the smears in against people who disagree with it quickly – in case people start believing them!

But why does this matter? This is how the media works, after all.

It matters because the SMC and its advocates are pushing a damaging, junk science and political agenda.

Political agendas

It’s one which is abusive and harmful to patients. It is also one which has no basis in scientific fact.

But it has plenty of basis in furthering the careers of its proponents, propping up the plans of big government and big corporations, forcing sick and disabled people into work and ultimately creating a world where we’re all reliant on popping pills and seeing shrinks – as opposed to actually being healthy or being given proper treatment if we’re not.

And our irresponsible, servile media plays a major part in keeping this agenda going; as it does with everything that’s in the interests of the powerful but damaging to the rest of us.

Meanwhile, with #MEAwarenessWeek and #MillionsMissing events fast approaching and the ongoing #MAIMES campaign looking promising, expect the media circus to continue.

I’ve given up writing full time to support my partner Nic, who lives with ME and nearly a dozen other diseases and illnesses. You can read about her journey here. Most of her medical treatment now has to be private; a challenge in itself with no income.

If you want to support us on this journey, or if you like my writing, any gifts/donations are gratefully accepted below. Thank you.
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8 comments

  1. Pingback: The propaganda war on chronically ill and disabled people just went up a gear — Mr Topple – Introverted but Socially Concerned
  2. Liz W · 24 Days Ago

    The SMC press release raises the issue of the need for the population of patients in studies to be well defined. But didn’t Wessely and his BPS and CBT inclined colleagues spend decades defining fatigue patients by using rather loose criteria (such as ‘Oxford’ and ‘Fukuda’), so reducing the chance that a biomedical cause would be found? ME patients, on the other hand, seem to have had a much better grasp of the scientific method, and have long pressed for stricter criteria. Will these researchers now agree with ME patients that the definition needs to be far more strict, at least CCC and preferably ICC? And that all their research papers that were based on looser criteria didn’t cut the mustard?

    Liked by 2 people

  3. gildedcell · 24 Days Ago

    I thought one of the strangest comments came from Prof John Martin when he said “Could the test be picking up something in the 20 patients not present in the controls such as anxiety?”. Obviously a very loaded biopsychosocial sort of suggestion (minus the ‘bio’ in spades), after all he could have inserted all manner of biomedical symptoms in place of ‘anxiety’ in asking that question, couldn’t he? However I should imagine checking for anxiety in either population whilst using this assay should be easy assuming anxiety has a biomedical mechanism which might turn up in cells/ serum/ plasma. And if it did wouldn’t that in itself shunt huge numbers of people presently receiving CBT doled out by the BPS paradigm via their IAPT programme from the ‘somatizing’ F45 population to a population with measurable pathology, which is problematical for the BPS juggernaut? So isn’t Martin kicking a bit of an ‘own goal’? I know, I know: the BPS would twist that too… they’re good at twisting things .. ref the PACE Trial & Crawley’s dodgy studies using weird REC references that have nothing at all to do with the ‘research’ she’s supposedly carrying out. Business as usual.

    But I don’t, for one minute, think this test relates to any sort of mood problem. The paper itself says it uses a cohort defined via CCC and part of that cohort are, I believe, patients from the ‘Severely Ill Patient Study’ who were defined using ICC as per this You Tube video (see 3 minutes 50 seconds). https://www.youtube.com/watch?v=DhGDi4azCrc&t=30s These are the sort of patients deliberately filtered out of the BPS model research as Liz W notes above. We know that the misdiagnosis rates of ME are high.. a number of centres have had to re-diagnose as many as one in every two patients that they see. Many of those will have psychiatric disorder (almost certainly due to the lax criteria of the BPS cabal) but many with other autoimmune diseases have to be re-diagnosed too. Data exists to show that people with authentic ME have no greater propensity for mental illness than any other chronically diseased population. So I’m guessing the cohort for the paper is unlikely to be more anxious than the average person. Ie: by using strict criteria the chance of a mood disorder being the ingredient here has been largely screened out.

    We don’t know exactly what this latest paper has exposed. But at least it has found something which the BPS probably wish hadn’t been found and are desperately trying to spin the plates and the story. As Ron Davis himself has said, these findings point to measurable pathology which does NOT happen in properly healthy controls. The binary result is quite outstanding. It might be ME-specific or it might not. But what it does do is differentiate. Simon Wessely says “The problem is not differentiating patients with CFS from healthy controls.” I guess this was a typo, because in his orbit the actual problem is just that: using a pathological biomarker to prove these patients, who have been so hideously gas-lighted for decades, are bio-medically ill and should therefore rest outside the scope of psychiatry. That is the VERY problem he REALLY doesn’t want to have.

    (Caveat: I presume all major psychiatric disease to biomedical. )

    Liked by 2 people

  4. StellaB · 24 Days Ago

    Simon Wessley is one of the Trustees of the SMC

    Liked by 1 person

  5. Liz W · 24 Days Ago

    Goodness, so he is. And the SMC press release says that he’s published over 150 papers on CFS. I wonder how many of those studies would meet Prof Martin’s apparently high standards for patient selection criteria/ disease definition?

    Liked by 1 person

  6. Pingback: The Propaganda War On Chronically Ill And Disabled People Just Went Up A Gear – The York ME Community
  7. Pingback: Når 5000 sier det samme – hvorfor er det ingen som lytter? | Dagens lille ME-glede
  8. michel · 17 Days Ago

    The problem is that there is a financial crisis and its reached the point where people are under threat of death. Since the crash in 2007 the gov has had 12 years to figure out what is eroding our economy. All the brilliant and intelligent people in this country to consult and yet no ideas except starving the weak to death to save money and reducing the nhs services

    Like

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