By David Tuller, DrPH
Earlier today I spoke with George Monbiot, a British investigative reporter and political activist, who has been a columnist for The Guardian for almost 30 years. He and I have been in occasional communication in recent years over an issue of mutual interest—the scandalous mistreatment of patients suffering from the devastating illness (or cluster of illnesses) known as ME/CFS and, more recently, from Long Covid.
For years, I have been hoping that a prominent British journalist would take on the charlatans who foisted the fraudulent PACE trial upon an unsuspecting public. Last month, Monbiot gratified that desire with a scathing column that correctly characterized the treatment of ME/CFS patients as a “national scandal.” (I blogged about the column here.) As he explains, his interest in the issue was largely prompted by the actions of PACE investigator Professor Michael Sharpe. Three years ago, at an insurance industry gather organized by Swiss Re, Professor Sharpe essentially blamed Monbiot for triggering patient reports of Long Covid by having written about it. (Monbiot’s initial 2021 column on Long Covid is here, and his response to Professor Sharpe ridiculous criticism is here; my blog about the contretemps is here.)
Excellent to see this engagement.
Patients need more involvement from thoughtful people in the media across publications. ME doesn’t discriminate.
Excellent. Many thanks to George and David.
Let’s not forget this presentation -https://www.youtube.com/watch?v=DqDTAHUMnq4 .
If George hasn’t seen it yet I’d highly recommend it to him. It’s a real eye-opener.
I think George mentioned that the BPS model is popular with governments and touched on some of the reasons why. With this model – which I would suggest is a distortion of what the BPS model should represent – responsibility is passed to the individual for their poor health and suffering, their failure to recover and their often deteriorating psychosocial situation rather than it falling on the state, health and welfare services, medicine and research to step up to the plate. It’s the patient’s fault for not getting better – either because they’re not trying hard enough or because they’re not willing to engage properly with the treatments – and they don’t deserve welfare or healthcare support beyond cheap exercise and psychotherapy. Cheap therapy will save money, lots of money, or that appears to be the theory that’s been touted. In terms of healthcare funding, physical health seems to have been pitted against mental health in, to my mind, the most hideous and reckless way. But in the UK at least, I’d say there is evidence that medical neglect is now reaching much further than ME and Long Covid, although I’d argue that they’re central to the BPS doctrine. The BPS model is likely now impacting many other chronic conditions and I’d wager is having a serious impact on the UK’s economic inactivity figures as a result. I think NHS hospitals are badly mistaken if they think they can safely cut physical healthcare appointments, investigations and length of stay by directing patients to psych services and exercise/physio- therapy but it looks very much to me like that’s a belief that’s currently taking hold.
I suspect the BPS model is not just popular with governments but is also very popular with doctors who can offload their most difficult cases or most stress-inducing patients on to somebody else. What’s not to like? Unchallenged discrimination on the basis of whatever prejudices they might hold. And if they don’t hold any prejudices there are plenty of anti-patient tropes put out there for them to adopt -https://bjgplife.com/unlearning-resentment/ .
When will people wake up and see that this a disaster for medicine and a disaster for our country?
I cried when i heard George’s last bit. Thank you both for seeing and hearing me and all my comrades in this struggle
Quan vas al metge surts pitjor que abans d’ entrar.
Thank you for the continued truth telling of the experience of those of us with M.E at the hands of those who got lost in their own prejudices and swollen egos and chose to do harm rather than proper scientific research. Just to add, that in my experience in the Uk (and as a long term M.E sufferer) it is not necessary for medics to push us towards the psychosomatic theory that they have invented. It is not all about the dreadful PACE trial.More sneaky than that they can happily send us round the exhausting circuit of ‘physical’ consultants, blood tests and scans which are all set up with the old paradigm of what constitutes ‘real’ illness. These testing systems bear no relation to the presence of M.E because they have not allowed any research and so as we all know to our cost, humiliation and frustration that these tests will always be negative. And the conclusion will always be that we are somatising a perceived illness. I suppose when you hold all the power you can invent the rules to suit yourselves..which is what the PACE trial did. But ironically, especially in the light of all the doctors who now have Long Covid, until you fall foul of this ‘one size fits all’ testing system ..you don’t know it exists. And the clever bit is that it will seem that the medical profession is attending to your needs..when in fact you were excluded before you even began the process. ’Insanity is doing the same thing over and over again and expecting different results’. Einstein
Amanda Carroll’s remark about repeating the same thing over and over reminded me of this -https://www.youtube.com/watch?v=P_q3fzhGtUw at 25.30 mins. One test is repeatedly negative so it must be a mental health problem? Isn’t it just possible that it was the wrong test?
I commented before: “The BPS model is likely now impacting many other chronic conditions and I’d wager is having a serious impact on the UK’s economic inactivity figures as a result.”
I’ve just been watching the UK’s Prime Minister announcing planned changes to its welfare system and stressing how people with mental health problems, who I gather are a sizeable part of the economic inactivity problem, must be helped to work. So I’d like to ask – how many of those people actually have serious physical health problems which the NHS refuses to address in order to save money, labelling them instead with ‘functional’ illnesses or medically unexplained symptoms which are treated as mental health problems? And…do doctors understand the part they may well now be playing in the dismantling/decimation of our welfare system?
How to destroy UK medicine and rip up the UK’s social contract with its people, in 3 easy-to-remember steps (PPS), perhaps:
Step 1: Paint physical health problems as mental health problems (thus reducing NHS spending and forcing desperate patients into the private sector).
Step 2: Paint mental health problems as normal struggles of life
Step 3: Sweet-talk the public into believing that people who experience normal struggles of life need to get a grip and don’t need time off work (thus reducing welfare spending).
To my mind, the MUS scandal, including the abuse and neglect of ME and long covid patients, should be at the forefront of any general election campaigning about the proposed UK welfare changes. The scandal appears to me to reach much further than ME and long covid now – I’d say that a wide range of patients is now at serious risk of being denied appropriate investigations and care.
Brilliant. Diagnosed in 1996, “retired” from teaching in 1998, I have followed the research and politics since then, and of course, David!!!! I was surprised by George’s comments on the Science Media Centre -and the links with the environmental science – I have also been involved with this via my partner.
It stinks. Go George ( and David) Go!
Really interesting interview. I am familiar with the history of the RCP setting up front groups and nestling itself in the establishment (or a part of it). I is the only thing that explains the relentlessness of the ‘respectable’ far right right now. A desire for money and power explains everything – that’s why they don’t care whether what they say is true or not.
And yes, ME is real, and we have to hope all the research on Long Covid will bring people’s suffering to a treatment option.
When watching the BBC series, The Rise Of The Nazis, I was struck by the similarities in the Nazi technic in rising to power shown on that program and that used by the BPS behavioural group. Posing as left wing, Infiltrating multiple groups and committees that make decisions such as funding, ethics, publishing, research and control of media. One of them is actually on a committee choosing judges I believe. The over arching theme is always defining patients as dangerous terrorists an enemy that needs to be suppressed by all means and stripped of benefits. One BPS person actually said he would rather be on the front line in Iraq than deal with ME patients. Yet some of them are psychiatrists and psychologists who you would imagine could expertly handle difficult patients. But of course most if not all of what they say isn’t true.
This was fabulous – it’s been fantastic to see George amplify so much of the vital work David and others have been doing. I also appreciated a direct call out to the misogyny that undoubtedly underpins a lot of the issues with the treatment of M.E. (and similar illnesses). Talking about it doesn’t solve the problems, but it does bring them to light. And for me at least, it makes me feel less alone as I navigate an illness so many people refuse to believe in.
Please write the book on this!