Trial By Error: Letters to Fiona Godlee and Nigel Hawkes

http://www.virology.ws/2019/02/18/trial-by-error-letters-to-fiona-godlee-and-nigel-hawkes/

 

For anyone wishing to remind themselves of Nigel Hawkes' "previous" this is the link to his 2011 paywalled article
www.bmj.com/content/342/bmj.d3780

Nigel Hawkes reports how threats to researchers from activists in the CFS/ME community are stifling research into the condition​

​

There are jobs that carry a risk, such as volunteering as a human cannon ball at a funfair. There are jobs that attract opprobrium and abuse, such as becoming an estate agent, driving a white van, or selling double glazing over the telephone. And then there is the job of trying to conduct research into chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

​

CFS/ME is a common condition, and very debilitating. The evidence suggests a population prevalence of at least 0.2-0.4% in the UK.1 Patients are incapacitated for years, unable to move, sometimes bed ridden and fed through a tube. Yet it doesn’t prevent some people, who claim to be its victims, from conducting a relentless personalised attack on doctors and academics who are trying to discover its cause and improve its treatment.​

Simon Wessely, professor of epidemiological and liaison psychiatry at King’s College School of Medicine in London, has been the target of such attacks for years. He’s been compared on the internet to Josef Mengele, the Nazi doctor who performed experiments on inmates of concentration camps. He’s had threats against his life, been accused of throwing a boy into a swimming pool to check if his paralysis was genuine, been bombarded with offensive emails, and had complaints against him made to his employers and to the General Medical Council.

The campaign has gained new life since the publication in March in the Lancet of the PACE trial, a comparison of four treatments for CFS that concluded, to the fury of the campaigners, that cognitive behavioural therapy and graded exercise therapy can be effective. Pacing, a treatment favoured by leading ME charities, was found to be ineffective.2

The publication prompted...

 

If anybody can stomach it, access here, http://sci-hub.tw/http://www.bmj.com/content/342/bmj.d3780

 

What's in a name? Plenty. "Activists", "patients", "campaigners", all written as derisive labels. The minute someone becomes a patient, some medical authorities view this person as not credible, unreliable, and unintelligent.

This class distinction is so powerful that even colleagues disabled by ME are discounted. ME patients are not placard carrying yobs. Some are scientists, physicians, and other medical professionals, lawyers, statisticians, teachers, science journalists, even psychiatrists. And yet, these experts in their fields, now as patients, supposedly have no right or authority to question the methodology of the PACE trial. Nor, it seems, do others - pwME, intelligent, common sense people with lived experience of all kinds whose wisdom has been ignored for decades. Such is the class system, and it should change. It's time to stop viewing "patients", as second class.

 

my favourite line in this latest from david
"the editor’s note is still sequestered in the medical journal equivalent of Siberia"



(not for a moment suggesting that Dave has gone over to the Dark side tho')

 

The word activist when used about patients or our advocates is afaic a derogatory loaded term. There’s a big movement to get improvement for mental health care and I don’t think those campaingners and lobbyists are ever described as activists. It’s really mainly used for fringe and contested issues like animal rights and environmental campaigners isn’t it? A campaigner is something respected, an activist is considered often an extremist trouble maker ?

 

In some medical circles the word "female" is also a loaded term, ripe with connotations of hysteria, hypochondria and attention-seeking

 

Isn't that only when they cant pick their favourite genital though?

 

https://www.youtube.com/watch?v=j4Kv3EmmoVY

 

I know calling people names is not very nice, but I've been trying to think of alternative names we can call them instead of BPS or PACE proponents, since they seem so keen on "activists".

How about "Exercists"? or "Psycho-exercists"?

 

GETIES?

 

Bexercise-psychs?

(Typified by pedalling backwards.)

 

Antivists. OR Anticates.

Rather than giving them a name that relates to their POV I thought I'd define them on our terms.

 

PACE scientists. In a decade or two it's going to widely have negative connotations.

 

HAHAHAOMG I remember this!

https://forums.phoenixrising.me/thr...-petrie-john-weinman.50681/page-7#post-836932

Our no-man's-land between psychiatry and "real" medicine seems to make us even more susceptible to dismissal. But we, at least, have a shot of letting our audience in on the science of our condition. The bulk of mental health research seems to be biological mechanism-free, as though someone took it into their heads one time to suddenly have schizophrenia, or bipolar disorder. And Freud really, really poisoned the well. Like us, they have a significant percentage of post-infectious stories, but they are far, far more likely to be told to buck up, that their families should hide them away, or that they 'just' need to find the right drug, like that wasn't a complex-as-hell process with low chances of success... no matter what television and movies claim.

They are still called activists, but there is a bit of poor thing, doesn't know what she's doing condescension tucked in. Don't know that's better or worse.

I follow a lot of mental health advocates on social media but there's the end of my knowledge so I'll take a seat on this now!

 

I am surprised the PACE appologists are describing us as 'activists' as that rather contradicts their belief system that we have actively chosen to be inactive. [Surely they should be using 'activist' as a term of commendation, given their belief that we would be magically cured if we just got active]. Surely they are the 'activists' and should be calling us 'inactivists'.

Having said that, since their research and their clinics exclude those with severe forms of our condition, are they not also guilty of 'rampant inactivism'.

 

We could just refer to them as Norman.

 

I just watched that one a couple days ago.
They left out the next line, "they (the ones pictured) are such sore losers..."

 

I was hoping for a remix of all the FFEMALES! uttered by Ferengi on the show but, alas, no one volunteered to do it, yet. The attitude is so similar to how most physicians think of us. Well, that and apparently reacting like they are facing a velociraptor and backing... away...slowly... do not make... eye contact (I've actually seen several comments like this, generously upvoted in the medicine sub-reddit).

 

I can't recall many others off the top of my head, though i am sure there are some.
I do recall two of the characters talking about it though the scene was not great.
There are scenes about it but that utterance is probably not all that common (not to say my memory is eidetic)
However i do remember the one where pregnancy being considered a rental was shocking to everybody.

https://www.youtube.com/watch?v=qZmF5_4wVZg