This blog is being written in response to Emily Maitlis’ lecture at the James MacTaggart Memorial Lecture of 24th August 2022, her lecture resonated with us and the issues she raised, in relation to journalism and politics, reminded us of some of the issues the M.E/C.F.S community faces in the UK with the UK Government, a small group of psychologists, and the Science Media Centre. As with the BBC, the Science Media Centre claims to be independent and impartial. However, its psychological bias towards M.E/C.F.S has been commented on many times within the M.E/C.F.S community. So much so that we won’t be repeating the points; we will simply share some of the articles and video clips for your reference at the bottom of this article.
During her lecture, Ms Maitlis said –
‘I’ve called this lecture “Boiling Frog: Why We Have To Stop Normalising The Absurd”. Because my contention is that despite Ian’s laudable protestations all those years ago, we’re becoming anaesthetised to the rising temperature in which facts are getting lost, constitutional norms trashed, claims frequently unchallenged.’
Specifically with M.E/C.F.S, the lost facts, trashed constitutional norms, and unchallenged claims are causing additional misery to a vulnerable chronically sick community that shouldn’t have to defend itself from attack from the medical profession or media. ‘Lost facts’ relates to the research studies, that would ordinarily be readily publicly available, that can only be accessed through persistent submission of freedom of information requests, trashed constitutional norms have a direct link to the human rights abuses of M.E/C.F.S patients in the UK by medical establishments, something we have been working on for nearly a year, in many cases these human rights abuses can be traced back to the work of the same small group of psychologists, the absurd claims of some in the medical profession often go unchallenged by their peers, and M.E/C.F.S patients who speak out are called ‘activists’ (Same effect as ‘fake news’ – right?).
Extract from Ms Maitlis’ lecture-
Populism – make no mistake – is not a traditional “ism” of ideology. It’s not Marxism or Reaganism; it has no adherence to a set belief or policy. The political scientist Cas Mudde explains it as the idea that society is separated into two groups at odds with one another: “The pure people” and “the corrupt elite”. Editor-in-chief of Foreign Policy Moisés Naím goes a step further: “Populism is best understood as a strategy for gaining and wielding power.”
“Populism is best understood as a strategy for gaining and wielding power.”
We strongly believe that the behaviour of a small group of psychologists and their M.E/C.F.S work has a very strong whiff of populism. Psychologists?! We hear you mock, how powerful can a group of psychologists possibly be?! That response is, in part, the problem. It sounds bizarre and M.E/C.F.S patients are often mocked when we call out the injustice. However, the evidence is there for anyone that takes the time to look for it. Professor Brian Hughes has written extensively in his blog The Science Bit (see links at the bottom of this blog) ‘about the destructive impact of eminence-based medicine on the lives of people with M.E The issue has a very long history that has many twists and turns.'(2) We would recommend anyone reading this blog also takes the time to read Prof. Hughes articles as they are always enlightening and most importantly, fact-based.
‘We – the frogs – have to give names to the populist playbook tricks we encounter. The Infowars host
Alex Jones (shortly to be 45 million dollars poorer) is not a “conspiracy theorist” in the sense he
believes the rot he peddles. That doesn’t appear to be the case. He peddles it to make money from subscribers to whom he then sells dietary supplements. Let’s not intellectualise and debate the merits of this as “free speech”. Any more than we would fake medicines. This is just a business model. ‘
It’s interesting to see Ms Maitlis include ‘fake medicines’ as her example because that is exactly the problem we have with this small group of psychologists. Their ‘business model’ is ‘peddling’ their wares to the highest bidder which is usually governments or global insurance companies looking to keep payouts and costs at a minimum. The psychologists research study (PACE trial – part funded by DWP and insurance companies) has been debunked internationally as flawed research. The M.E/C.F.S community fought for years to get the outcomes of this flawed study removed as ‘treatments’ for their disease as they harm some patients. NICE acknowledged these ‘treatments’ as potentially harmful and, in their ME/CFS guideline review final draft published on 29th October 2021, advised clinicians to no longer recommend Graded Exercise Therapy or Cognitive Behavioural Therapy to M.E/C.F.S patients. However, at the exact same time, Long Covid had emerged and grown into a large, untapped, opportunity. One of these psychologists, jetted off to give a presentation to a Swiss group of insurance companies. Given that the international M.E/C.F.S community of patients, scientists, charities, and advocates had already seen that many cases of Long Covid were in fact M.E/C.F.S, this development was, and remains, very concerning.
It has been described as ’eminence-based medicine’ for a reason, this small, group of psychologists haven’t only earned a living from their M.E/C.F.S work, they have also landed high-powered positions for themselves and/or their relatives as a direct result. They can do no wrong in the eyes of their fan base, but when you put all the pieces of the puzzle together, it is astonishing to see the lengths that have been taken to keep hold of their power, even when the international scientific community has acknowledged flaws in their work. Where have scientific standards gone? Some members of this small group have high level positions within the medical establishment and one was a Trustee of the Science Media Centre – thus guaranteeing that their ‘M.E/C.F.S is psychological’ narrative was allowed to dominate the UK media for over a decade (continues to this day in many outlets). There is now copious amounts of evidence to prove that M.E/C.F.S is a biological disease yet journalists always include a caveat in articles, explained away as ‘balance’, that some people believe M.E/C.F.S to be psychological. Why? There is no need to add ‘balance’ or an alternative view when it has been proven to be biological. It is particularly frustrating to see articles celebrating new published research that has found another biological anomaly in M.E/C.F.S-affected bodies with a caveat at the end from a psychologist or one of their professional fan base. This happened when NICE published their guideline review. NICE had just spent over 3 years sifting through extensive research and scientific developments yet there was a caveat. See the last paragraph of the article below –
Ironically, M.E/C.F.S patients have their own experience of BBC Newsnight’s ‘balance’. On 8th April 2021, the Newsnight episode contained a segment on Long Covid that used one person’s Long Covid experience to represent all Long Covid patients’ experiences. Watch the episode here. Stripy Lightbulb CIC submitted a complaint and queried the ‘balance’ included within the segment. See our complaint via this link. Our complaint was submitted via email on 13th April 2021.
This is the response we received a couple of hours later –
Dear Sally,I’ve passed the email on to those who produced it. They are happy that within the report there was balance and a variety of voices.If you wish to formally complain then you’ll have to contact the BBC complaints unit and they will examine it.I hope this is of some help and as I say the producers are aware of your concern.Kind regards, ******BBC Newsnight
I would later learn the ungainly name for this myopic style of journalism: “both sideism”, which talks
to the way it reaches a superficial balance whilst obscuring a deeper truth. At this stage, I had never
heard the term, or indeed the criticism; I just thought we were doing our job.
In the words of Ms Maitlis –
Our job is to make sense of what we are seeing and anticipate the next move.
It’s the moment, in other words, the frog should be leaping out of the boiling water and phoning all
its friends to warn them.
But by then we are so far along the path of passivity, we’re cooked.
Since the early days of the pandemic, we have been warning that Long Covid would be in the sights of the same group of people that have haunted the M.E/C.F.S community for too long. It is very sad to see that we were proven right. Too much of the research funding allocation has been given to psychological research and insurance companies are refusing payouts.
History is repeating itself.