By David Tuller, DrPH
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English actress Jennie Jacques is known for her roles in the BBC’s Desperate Romantics, a 2009 series about the Pre-Raphaelites, a police procedural called WPC 56, which ran from 2013 to 2014, and Vikings, a History Channel offering from 2015 to 2019. In 2021, she discussed having developed ME/CFS in a profile that appeared in The Times, in which she reported being “a shadow of my former self physically.” (The author of the article, Sean O’Neill, is the father of Maeve Boothby O’Neill, whose death of complications from ME/CFS has been widely covered in the British media.)
Although Jacques’ acting career has since been on hold, she has dedicated herself to ME/CFS advocacy. In particular, she has posted a series of interviews on her youtube channel. Last week, she hosted Guardian columnist George Monbiot and me to discuss the incredible mess created by the CBT/GET ideological brigades with their decades of disastrous and sometimes fraudulent research. (As I have repeatedly explained, I am not accusing anyone of “fraud” in the legal sense. I’m not a lawyer and so I have no public opinion to share on such matters. As a writer, however, I am using “fraudulent” in its meaning of “deceptive” or “misleading”–the research equivalent of a Potemkin village.)
I was really pleased to be asked to participate in this conversation. We covered a lot of territory. And yes, I did manage to point out that this cabal of investigators has engaged for decades in one big “circle jerk.” (For those unfamiliar with the figurative meaning of this term, it is, according to this slang dictionary, a “group of people who are ‘getting themselves off’ in the echo chamber of their own opinions or activities.)
Here’s the interview.
The main thing that struck me in this video was what George flagged up (from around the 5 to 6 minutes mark) about the problem with the media being that journalists don’t have the time to dig deep into the stories to research them properly and so can be easily steered or misled. The exact same thing can be said about doctors who, with such hectic work schedules, have little or no choice but to take on trust what they’re told by their medical journals (where peer review unfortunately often fails to protect them from being misled), textbooks, CPD sessions etc.
I think that both the medical and journalism professions need to wake up to and admit this problem (as George did) and take steps to address it. Surrendering the task of scrutiny to an overriding authority/body, and trusting that what’s being disseminated or taught is true, leaves both professions open to being grossly misled with potentially disastrous consequences.
The problem with medicine is probably a much harder nut to crack than that with journalism. (With journalism, getting rid of the SMC or any equivalents might mean that journalists once again have to try to get their own heads around the science and that lobbying by interested groups may become more obvious to them. Media organizations might then sensibly recruit scientists to science journalism roles rather than people with no scientific training. And just telling journalists not to put their faith in organizations like the SMC might have an effect, who knows? ) But what can medicine do? Doctors don’t have time to delve deep into the science behind what they’re being taught, they have to trust that they’re not being misled. Peer review is clearly failing, likely because instead of having competing teams in separate countries, regions, hospitals or universities who are more than happy to call each other out, we now appear to have global cliques of researchers all believing in the same thing who get together for fancy global conferences in really nice places. Pals across the world, all scratching each others’ backs. That is much harder to fix. Perhaps medical journal editors could rise to the challenge and do a much better job of reviewing the papers they publish, but they might well be part of a clique themselves. Maybe the bodies that oversee doctors’ fitness to practice could view misleading the medical profession as a much more serious offence than they seem to. And if it gets to the point where many patients are saying that something is going seriously wrong, perhaps politicians should step in and order an inquiry that looks closely at the science and listens to all perspectives instead of taking medicine’s word for it that everything’s ok…..as George has suggested -https://x.com/GeorgeMonbiot/status/1847235064012136658 .
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Is it not legally fraudulent to alter data in a trail to suit one’s own interests? I’ve heard it called scientific fraud. They financially benefited from speaking at medical insurance conferences due to the publication of that trial being favourable to that industry. That’s a conflict of interest.. I heard the authors and friends had GET clinics that received money because the trial was successful.
I see Simon Wessely was deeply involved in the ‘Science Media Centre’ where many have claimed the group intentionally misdirected and mislead journalists and politicians.
And patients were given a bogus treatment that worsened their disease.
If all that (and more) isn’t fraud then what actually is?
Wessely, Sharpe and Co can have a crack at suing me, but with 35 years of ME/CFS I don’t own anything. They can’t take away anymore than they already have. Like the blocked funding for biological research due to that Pace Trail, as that’s what’s kept us sick at least a decade longer than needed. And just as bad when Long Covid arrived, there could have been a treatment ready and waiting, but nothing was available due to lack of biological research on ME/CFS. Yet those same psychiatrists had a go at Long Covid sufferers too, claiming it was social contagion. There they were still trying to deflect the appalling damage to ME/CFS they’ve done. It’s like they were saying to us all “Don’t look up!” But people did start looking up.
Like when Michael Sharpe shoot the worst home goal of his career at the award winning investigative journalist George Monbiot, who Sharpe claimed was spreading Long Covid by “writing” about it! WTF?! Yet when challenged by Monbiot who also looked up, Sharpe couldn’t produce any evidence.
It’s actually Sharpe who needs assessed by a psychiatrist for that insane thought process.
So it’s fully established that Sharpe is an utter idiot for targeting Monbiot. As Monbiot has since written 3 damning articles exposing these charlatans to a wider audience. And great to see other media outlets are picking up on the scandal now too.
That will probably be Sharpe’s greatest regret, lol, and altering the data of the Pace Trail in the first place. Fools that spent years trying to hide their unethical behaviour finally catching up on them. And the best is yet to come.
I can’t wait for a Netflix documentary on the “The Greatest Medical Scandal of the 21st century”
I’m sure that will eventually happen.
In the meantime we desperately need funding for biological research. Write to your MPs or congresspeople briefly tell them your story and why funding actual ME/CFS researchers matters. And that it will benefit Long Covid too