This week we learned that online activists are silencing scientists in the UK:
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…
The idea of critics or activists challenging researchers and seeking to hold science to account isn’t new. Most researchers say they are happy to engage in discussion. But with social media, email and internet now accessible from almost every home, mass communication gives online activists a voice with unprecedented power. In the field of CFS/ME research, it’s often personal. Those at the centre of it say it’s gotten out of control.
The good news is that these poor put-upon scientists are not going down alone. They have defenders. For example, rushing to their aid on the pages of The Times was none other than that paragon of fact-checking, Mr Rod Liddle:
Yep. That Rod Liddle.
Far be it from me to say anything bad about Mr Liddle. I will leave it to Wikipedia to explain how his various writings have been described as racist, homophobic, transphobic, ablist, misogynistic, Islamophobic and antisemitic, and regularly just hurtful to whatever vulnerable minority or target group he chooses in the moment. I know, Wikipedia might be wrong. Bad Wikipedia.
Nonetheless, we can certainly say that Mr Liddle is very much on the side of the silenced scientists. I won’t quote him directly. Instead, I will direct you to Frances Ryan’s eloquent riposte over at The Guardian, where she identifies the vilification of myalgic encephalomyelitis/chronic fatigue syndrome patients as just yet another form of 21st-century hate speech.
But won’t somebody please think of those poor scientists?
* * *
Who are they, exactly? Well, here’s an old group photo that contains some of them:
Yep, there they are, attending a meeting on “Malingering and Illness Deception” way back in 2001 (and yes, I edited the image to blur their faces and remove their names, as a courtesy).
For 20 years, they have promoted a psychogenic model of ME/CFS. Their theory dismisses sufferers as psychiatric patients whose condition is all in the mind, rather than persons debilitated by authentic physical illness or disease.
But those terms though. “Malingering“? “Illness Deception“? Seriously? Even if the psychogenic theory were true, such labels are not very nice ways to describe patients. You might even consider them, well, abusive.
As it happens, the psychogenic theory is in fact highly unlikely to be true. The theory is defended by an ever dwindling (predominantly British) cohort of professionally interconnected psychomedical practitioners, and stands in increasing contrast to, say, the scientifically informed positions listed by the ME International Consensus Panel, the US National Academy of of Medicine and Centers for Disease Control and Prevention, and the World Health Organization.
As I have written about before (here, here, here, here, and here), ME/CFS is a chronic, inflammatory, physically and neurologically disabling and likely immune-mediated disease, involving disruption and dysfunction of multiple bodily systems.
That is, unless you are in the UK’s crazy ME/CFS psycho-vortex. In that topsy-turvy place, ME/CFS is an example of “malingering” or “illness deception”. Basically, the disease is just an opinion. An idea the patient dreamed up in their free time. After all, patients have so much free time — you would too, if you were restricted to lying in your bed, unable to move, for several decades.
* * *
Note that the “Malingering and Illness Deception” conference pre-dated, by several years, the much beleaguered PACE Trial, which is so often held up as providing key evidence to support the use of psychosocial therapies for ME/CFS. According to Reuters,
…[the PACE trial] sought to evaluate the effectiveness of different types of therapy in CFS/ME patients…the results found that cognitive behavioural therapy – designed to help patients change their thinking and behaviour – and graded exercise therapy – in which patients are encouraged to start from very low levels of daily activity and then incrementally raise them – are safe and moderately effective treatments for some people.
It is striking how the Reuters reporter so readily accepts that the PACE Trial simply “found” what it said it found, just because the authors said so in the original research report. In reality, the PACE Trial has been described as flawed by several high-profile authoritative reviews, and is extensively described as such in subsequent scientific and medical literature (although not, it seems, extensively enough for the Reuters reporter to find it using, I don’t know, maybe the internet? Perhaps their broadband was down that day…).
It is notable that most of the high-profile figures who promote the PACE Trial held their views long before the PACE Trial was ever conducted. They wrote papers about their views, authored books about their views, designed therapies based on their views, developed psychometric instruments drawing on their views, and — yes — organised conferences among themselves in order to discuss their views. These views are core to their professional identities. For many, these views are the only reason they have professional identities.
Rather than providing evidence to support a new understanding of ME/CFS, the PACE Trial was conducted long after the investigators’ conclusions were formed. PACE was not the source from which insights were sprung. It was practically the last act in the play. And according to one of its authors, the PACE Trial pretty much amounts to the very last thing he will have to do with ME/CFS:
[He] no longer conducts research into CFS/ME treatments, focusing instead on helping severely ill cancer patients. “It’s just too toxic,” he explained. Of more than 20 leading research groups who were publishing treatment studies in high-quality journals 10 years ago, [he] said, only one or two continue to do so.
(Of course, an alternative view could be that research prospects are drying up because the field of psychogenic treatments for ME/CFS is scientifically unsustainable. The model is proving to be anachronistic; it is increasingly hard to get research funding for the stuff.)
* * *
It is absolutely true that much of the discourse surrounding ME/CFS is deeply fraught and highly contentious. There is a lot of anger. There is serious pressure. There is extensive name-calling and criticism that targets individuals. Things can get messy. No doubt about it.
That said, though, we should remember what is going on here.
Namely: patients with serious physical disabilities are being told, by a small coterie of academic health professionals, that their illness is a figment of their imaginations. That’s pretty incendiary. But then they are told that, as a consequence of their “illness deception”, they must be treated effectively as psychiatric cases. They must be given psychological and behavioural therapy, instead of biophysical medicine.
It is quite the double-whammy. Many of these patients are bed-ridden for decades, emaciated and debilitated, unable to study or work or hold down a normal family life. And yet they are told: “We do not believe you are really ill. You are malingering. And precisely because you are malingering, you now will be prevented from receiving proper treatment.“
I don’t know about you, but that pretty much sounds like trolling to me.
These practitioners have basically been gaslighting their patients for twenty years.
All of which makes it just a little pathetic to watch them now leverage their press contacts to publicly complain that they are the ones being insulted by, ugh, mere sick people.
* * *
A final word: We have all been trolled on the internet. I have been trolled on the internet. In fact, just about every time I write about ME/CFS, I get trolled, sometimes on Twitter, sometimes by email. And I can tell you this. The folks who troll me are far from critics of the PACE Trial.
Very far indeed.
Brian Hughes is an academic psychologist and university professor in Galway, Ireland, specialising in stress, health, and the application of psychology to social issues. He writes widely on the psychology of empiricism and of empirically disputable claims, especially as they pertain to science, health, medicine, and politics.
I could kiss you!!
Thank you so much!! Spot on!!
Thank you Brian!
Thank you so much for this! Very eloquently put.
The thing I miss is that all the supposed threats and hate they’ve gotten turned out to be… Nothing. They get critique, but far from the aggressiveness they claim. If that’s not trolling, what is?
Thank you!!! Thank you so very much for being a voice of truth and reason!
Joining Anil when it comes to having strange urges to kiss you!
This was very well written.
From the bottom of my heart: THANK YOU!
Sending you a cyber bear hug for your help for ME patients. Maybe there’s something to Psychology after all! 😉 Seriously though, it’s wonderful to have support from real Professionals like you. My husband loved your book, but I haven’t yet had the energy to read it. I do look forward to doing so though – I just know I’m in for a real treat. My very best wishes to you.
Thank you so much. You are spot on. When Michael Sharpe’s CBT and GET made me so ill I ended up in a hospital bed in 1991 I was then subjected to a week of abusive treatment from him and his colleagues as an in-patient, blaming me for getting worse, claiming I subconsciously didn’t want to recover and, in our last meeting, leaving with the chilling words: ‘We will be proved right, our careers depend on it.’ I was iller than I had ever been and traumatised as well. Small wonder that when I saw him in The Sunday Times and heard him on Radio 4 on Monday, I had the kind of trauma reaction often suffered by victims when faced with their abuser and found myself sobbing and physically shaking. Thank you for standing up for us.
Alison, I am so sorry to hear of your awful experience. And there is the crux of those such as Simon Wessely and others of his ilk. This has always been about their careers and funding, and not about the patients they claim to be there to assist.
Thank you very much for this. I’m at 49 years of this disease and reaching a point which is so intolerable I would have been put down decades ago if I were an animal. I have no illness-specific care because there isn’t any. Neuropathic pain meds are a joke. What I’m going to say next will be construed as trolling, but if you think about it, it simply can’t be so: I wish so much I could inflict what I am presently suffering on all members of the BPS cabal who have denigrated this disease and have led to a vacuum where I (and many others) suffer with indescribable symptoms every moment of every day for year upon year without the biomedical research that has been waylaid for 49 years (thanks to Beard and McEvedy) & which might have now provided respite from some of the worst of this disease, so much time we can never recover. That sentiment can’t be considered ‘trolling’ , because in their pathetic little self indulgent universe they have the tools of CBT and GET to readily return them to health.
If I see this comment reused by the BPS cabal and taken out of context then I think that will say it all!
Thank you, thank you, thank you.
Thank you, thank you Brian for adding some well needed humour into the pantomime equation, What are you going to do for an encore?( psst… He’s BEHIND you!)
Thanks for this Brian.
But I’d like to point out that the person in question hasn’t left the psychosomatic field. Instead they’ve been casting their net ever wider over the last few years and will almost certainly be busy inflicting their false illness beliefs on even more patients, including cancer sufferers and those with long term chronic conditions. God help us all.
Very well written! Thank you.
Thank you, tweeted out to the world.
Thank you for this precise and to the point write up. I personally love my area of work. In order to do it I am in bed every weekend and every morning in order to continue with it. I only work 3 afternoons a week for 3 to 4 hours. Why would I choose to live my life this way if I was just a malingerer?
Let me get this straight, so This main guy is now in the process of trying to get cancer patients to believe that they too are just imagining their symptoms? I don’t understand why I have been placed in this category. It has affected my ability to obtain disability pay & that plus opioid phobia has prevented me from receiving any type of meaningful useful treatment. The reason I don’t understand is because I have physically diagnosed conditions like osteoarthritis in at least 10 joints, I have either seborrheic dermatitis or psoriasis on my scalp- how can a person somatize that???? I mean there are flakes and scabs coming off my scalp I’m not imagining this everyone in the entire world can see it. So when I tried to get to the bottom of why I have this skin condition on my scalp and insist on better treatment because the only thing I’ve been offered is shampoo that doesn’t work, I’m told I have somatic symptom disorder. I am told about the joint pain that I’m spending way too much time trying to figure out how to fix it and how to keep it from getting worse.
Excuse me? Isn’t that the job of my healthcare providers? Why am I even having to do this? They are offering me next to nothing for treatment: Nsaids. Lidocaine patches. Acupuncture. That’s it. I got a consultation with the rheumatologist and asked her why she doesn’t consider a fibromyalgia diagnosis her reply was that I don’t have any brain fog. Meanwhile and I brought her attention to this as she was leaving the room telling me she was no longer going to see me in her practice anymore because I was verbally abusive, I tried to tell her that I do have brain fog so severe that I had at that time that she was saying that a dementia evaluation ordered that was scheduled for a month and a half following the rheumatological exam I was attending. It didn’t matter to her that I had that evaluation scheduled nor that I had complained of brain fog or whatever you want to call it that constellation of mental cognitive symptoms that results in a person thinking they might have dementia, I had complained of that at pretty much every primary Care appointment I had had in the year and a half to 2 years prior to the rheumatological consult. It became abundantly clear in that moment that this rheumatologist had not looked at anything in my files or chart and was facing her diagnosis on blood labs and x-rays and an odd MRI or two of a knee or lower lumbar and cervical spine. It’s probably worth it to mention that I am and have been the entire time a Medicaid patient in California……
👍👍To busy “malingering” to respond with more.
Thank you so much for this. I’m with the others, unsure of whether to kiss you or give you a huge hug (I’m apparently a very good hugger). For this to come from a psychologist will give us some much needed and appreciated credibility. 🤗. Have share to my very modest blog.
Thank you so much, brilliant piece of work 🙏👍
This is a bracing reminder of all the many ways in which those with power will do anything to keep it. I thought I knew this story but your point about the PACE trial being little more than one giant case of confirmation bias in action was very revealing. The intellectual hole at the heart of the psychosomatic project is like a vortex into which logic, evidence, and scientific method are relentlessly sucked. It’s true because we think it’s true so it’s always true. No evidence? No problem! No evidence is our evidence. See? Just like magic.
Thank you, great article. That photo of the malingerers and illness deception meeting really brings it home. The abuse of patients with this illness is shocking.
I was so moved by your article I just had to read it to my husband, who is a scientist. (And who tsked and chuckled at all the right places.) Now I am losing my voice and need to rest, but it was very, very worth it. Thank you, your voice travels so much farther than mine. 🙂
I have followed the awful treatment in England for 20 yrs since I have FM/ME in Canada for all those years. The Kings College Dr.’s & the treatment from all the money wasted, & then the PACE trial??? I would like to follow this silence bit as I liked this writing. Joan
Great piece Brian thanks so much for the continued advocacy it’s so greatly appreciated!
Thank you Brian. It is so nice to have you standing up for us patients. All we want is for researchers to follow the science. Even the PACE objective data is useful as it shows that people didn’t recover and were still very ill at the end of the trial despite the authors claims.
Well said. Thank you for speaking out for us.
Oh but didn’t you know people with ME should just accept they are ill and are never going to have any quality of life and what drs and physio’s say is law and patients know nothing about there own bodie!!
CFS must have been deliberately engineered. That’s why you have these « illness deception and malingering », which are so shockingly abusive that they must have an alternate purpose- to deny the illness exists so that when people ask why there’s no treatment for a disease as debilitating as end-stage cancer, they can simply reply: « they’re crazy. ». This was a technique used by the Stasi in communist East Germany: Zersetzung and the like.
Well, you know.. except that Florence Nightingale almost certainly had it. So that’s some kind of magic, engineering a disease that long ago…
No, this is just criminal behavior, period. People protecting their wallets over people’s lives.
Thank you, from the bottom of my heart, for writing this 💙
Thank you so much Brian for speaking out on behalf of the patients and for telling it as it is.
You really can’t know just how much it means to all of us.
Thank you for joining our growing band of champions.
They dressed their little psychogenic theory about ME up and bluffed and bluffed their way and many were taken in by it. But now as the fact that it has no clothes is becoming evident to more and more in the medical and academic world, they are abandoning the ship. And once again true to form, blaming the patients and adopting the role of the victim, adding yet further insult to the patients.
Funny how they don’t mention that more and more academics and scientists are expressing criticism of their hypothesis about the illness and their PACE Trial study, which was supposed to seal the deal, but has actually done the opposite for anyone that has looked at it with an open mind.
Excellent Brian. Many Thanks
Excellent article and love your humour. I also loved your book and take every opportunity to use “eminence-based”. Hahaha.
Excellent stuff, thank you! Did you send this to reuters?
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Written 2 years ago. Absolutely still worth reading.
This is sooo true:
And yet they are told: “We do not believe you are really ill. You are malingering. And precisely because you are malingering, you now will be prevented from receiving proper treatment.“
What my ME ill wife is told and what i am told about my ME ill daughter
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