The Guardian's Science Weekly podcast - 2 November 2018 - What role should the public play in science?

https://twitter.com/user/status/1062162464329162753

 

"
So, for a person with an illness of ambiguous status such as CFS, the choice is between
being given a diagnosis of a bona-fide medical condition which everyone regards as real, an
adequate reason to be away from work, a reason to seek medical care and a blameless
affliction or a psychiatric diagnosis which many people regard as imaginary brought on by
yourself, evidence of laziness rather than illness and not really deserving of any particular
sort of care.

The rational person would arguably make the obvious choice. Furthermore if
that person felt that the medical establishment had got it wrong, and indeed had got it wrong
not by mistake but by virtue of a conspiracy to prevent his/her illness being regarded as
legitimate, one might become politically active and make a big fuss. This seems to be what
has happened (Walker, 2003).

From the perspective of the patient advocate, this issue is not a mere intellectual
diversion but a serious battle. And, given the aforementioned considerations, perhaps an
understandable battle. The territory being fought over is the very legitimacy of the
illness. "

June 2005
Michael Sharpe
https://www.researchgate.net/public..._fatigue_syndrome_Controversies_and_conflicts

“Silence becomes cowardice when occasion demands speaking out the whole truth and acting accordingly.”
― Mahatma Gandhi

“If an offense come out of the truth, better is it that the offense come than that the truth be concealed.”
― Thomas Hardy, Tess of the D'Urbervilles

 

I'm sure he'd think of himself as doing that, ignoring the way that his treatment of ME/CFS patients raising concerns about things like PACE helps to stigmatise MH patients and presents them as undeserving of honest discussion and debate.

 

I think there is a need to avoid jumping to conclusions here. He says that psychiatric diagnosis is one "which many people regard as imaginary...etc". He is merely describing public perception, and, as a description, this is no doubt accurate.

It is strange how "dysfunctional cognitions" and "maladaptive behaviours", those reasons for CBT and GET have wholly disappeared from the description, just as the first steps towards the Pace Trial, to justify them, were being taken.

 

It was Sharpe who used the 'undeserving sick' quote, and there was an implied criticism of it. I think that they do talk about the need to challenge these prejudices, but then they continue to try to use them to dismiss patients raising concerns about things like PACE. Actions matter more than words.

 

(Note this and excerpt in previous post is from 2005)
Sharpe does go on to say:
"
At present however if one has an ambiguous condition the rational choice may well be to
vote ‘‘medical’’ rather than to vote ‘‘psychiatric’’.
From this view point one may argue that it is not the views of those advocates who attempt to defend CFS from psychiatric territory which must change, but us who must change in the way we currently conceptualize illness.
So whilst the issue of relationship between CFS and psychiatric disorder may seem to be
merely a small issue, it does, in fact, raise issues which challenge the way we see the larger
perspective of modern medical thought and practice."

The whole thing is to push the 'mind/body' thing; it has got nothing to do with CFS per se.
And they succeeded.

They created this illusion that it was/is all about the stigma of mental illness.

(I should have made this clearer in my earlier post).

 

The error is they chose to push a pseudoscientific ideology, rather than actually spend the billions characterising the reality of the hypothesised mind-body connection and developing an deep understanding of these illnesses.

 

Talking about the "rational choice" being to choose physical instead of psychiatric is another of those sleight of hand distractions. It makes sense to the reader but it has nothing to do with patients with ME (or CFS).

He says " if one has an ambiguous condition". This is just a hypothetical situation which the reader interprets from context as being about people with ME, but it is not a description of our situation at all!

We would be happy with a psychiatric diagnosis IF IT LED TO GETTING WELL AGAIN!!!

Our objection has nothing to do with physical/ psychiatric choices, it is because of experience and scientific research evidence.

 

Has anyone else heard back from The Guardian about this?

I had an email in mid December to say they were looking into it, but not heard anything since.

 

The Guardian have now issued an update: https://www.theguardian.com/science...public-play-in-science-science-weekly-podcast

 

How do they think that justifies their BS?

If that was the intention, shouldn't some of the public critics of this work have been allowed to speak?

Did anyone who complained get any sort of response?

The Guardian is just the worst.

 

I'm fairly confident the Daily Mail is Just The Worst™.

 

Not on ME/CFS issues (which is just about all I feel able to make an informed judgement on nowadays). That the Guardian manages to combine their ignorant bigotry with a smug sense of self-righteousness makes them all the more unbearable.

 

The Daily Mail article following the Reuters hit piece was actually better than the original Kelland article. It had fewer gross inaccuracies anyway, and was a bit less egregiously biased.

Which says a lot, since it was still pretty bad.

 

I've seen a lot more terrible Daily Mail articles on ME over the last 10 years than I have in the Guardian...

 

Really?

I think I've seen way more terrible stuff from the Guardian, and nothing like this from Jerome Burn to balance it out: https://www.dailymail.co.uk/news/article-4790904/Why-doctors-patients-war-M-E.html

 

Yeah, this. How can it be a conversation about the role of the public in science when it only airs the personal grievances of influential academics (and a celebrity-physician) who are deliberately obstructing the role of the public in science, up to and including the very population they allege to serve, and does not involve a counter perspective, especially from "the public"?

I guess they kind of answered their question. And we're not even talking about "the public" in general here, we are talking about a specific population whose role has essentially been erased by institutions despite being subject to systemic malpractice and a complete failure of duty of care in medicine. Apparently the stakeholders of medical guidelines should also play no role in science, according to Sharpe's personal grievances, a perspective presented uncritically.

If anything, the message is that if stakeholders want to play a role in countering harmful advice, enacted in full awareness of numerous complaints, then they will be attacked as unhinged militants by those who are causing harm and grief as long as institutions side against legitimate complaints and reliable evidence that contradicts a political agenda.

Massive, massive failure from the Guardian. Could hardly have been more contemptuous of the role of "the public" in science with a literal GFY.