Trial By Error: Some Thoughts About an Upcoming Article

Well done @dave30th. Keep up the important work!

I figure this is good for the world see. Let people outside take part in this mess. At first it can be hard just to sit back and let it sink in, but ideally I hope for no response or just a tiny one.

 

Dear journalist - yes, you: the one who put those questions to Dr David Tuller and Prof Vincent Racaniello, you the journalist who's now reading ME forums looking for further material - I don't know you so I'm prepared to give you the benefit of the doubt.

From reading this thread you will have understood that your questions can be (mis?)interpreted as an attempt to gain material for a personal attack (and if we have misunderstood, my apologies, the following may not apply).

But maybe you were mislead by provided leads of alleged widespread harrassment of researchers, anti-science smear campaigns and more. All red herrings.

If you are familiar with just a portion of David's work you will have realised already that David is always fully transparent about his motives and doings, no hidden agendas or arms-length hatchet jobs from him.

You'll also have noticed that he always gets back to the substance of his critique of bad science. If he can seem repetitive in his missives - and I'm sure it can feel that way for those on the receiving end - that's only because he doesn't get any replies that satisfactorily address the concerns he raises. So he asks again. That is, as you know, what journalists do when their questions are being evaded.

And yes, at times he can by his own admission become emotional about the unethical practices he has uncovered. This marks him as human and as a man with a strong moral compass. Somebody who tries to do what is right, not what is easiest or most convenient.

I urge you to consult your own moral compass. The ethical way to cover David's work is not by focussing on his person but on the substance of his critique and, above all, on why he is not getting any timely and satisfactory responses to his valid questions. That's where the opacity and hidden agendas are hiding, ready to be uncovered by a good piece of independent investigative journalism. Maybe by your good piece of independent investigative journalism?

@dave30th Your response to the questions is excellent, sticking to the substance and transparent as always. Vincent's response was equally excellent, firm, polite and very professional.

 

That is true, but, if one hopes to win, not fighting rarely means doing nothing.

 

@dave30th Dave, has it been put to you that there are recent examples of "horrible behaviour" on the part of patients and that your work is enabling it, or is this merely a supposition? Have instances of any such alleged behaviour been cited?

It is noted that the questions which you quote are a selection, presumably selected for their banality. Were there other questions of a more substantive nature which you have considered it inappropriate to disclose?

 

I can confirm that Dr Racaniello's recommendation has not been taken up. I have not been contacted by any journalist.

I will not be surprised whether or not a piece appears. But I am surprised that a journalist would be naive enough to have come this far, unless of course someone is pushing them to do so.

Any intelligent professional directed to David's blogs by an article will see that he is right, even if they prefer to pretend otherwise

 

David ( @dave30th ) says "The journalist—one of the many BFFs of the Science Media Centre among the UK press corps", which suggests he believes the journalist to be responding to encouragement from a member of the British BPS crew.

It does seem that there has been a significant tendency in the British establishment to take the pronouncements of this small group of academics at face value, resulting in people rushing to their defence without asking how reliable the information they being given is. This failure to fact check by medical journals and by journalists has in the past enabled their claims of harrasment to successfully distract from their bad science and their inability to respond to valid criticism.

Although things are shifting, there are probably enough journalists left still naively willing to believe what they are told without exercising due diligence, as illustrated by the recent Cochrane piece by Reuter's.

 

...or Dave has googled the journalist's name, and seen that they 'have previous' when it comes to promoting the SMC line.

 

So they're seeing @dave30th as a threat now that needs to be silenced. Good sign in fact. If there's any help we/I can offer for the fight...just say so.

 

There may be several journalists lazy enough not to question the old activist narrative. However, I suspect there are not very many who are going to make this the theme of a piece having done some homework. They may be countable on the fingers of one hand - even that of a two-toed sloth. Most of the stuff from SMC has been quoting 'experts'. What seems to be being planned looks something rather different from anything so far, even the Reuter's piece.

 

Not sure how many agree with this point of view in this thread but this does worry me a fair bit. We’ve seen in the past that the message being inaccurate ultimately doesn’t matter when it comes to producing devastating consequences. Argh.

 

There are a number of instances of people being 'warned off' raising issues re PACE; from memory Countess of Mar from SW, recently Carol Monaghan from MS, I am sure there are others. Might it be an idea to gather these on one thread (just for reference)?

eta: my post here about Countess of Mar, also on that thread, Jo Edwards also 'offered a beer' by SW.
https://www.s4me.info/threads/micha...ohnthejack-on-twitter.3464/page-51#post-81243

 

I was surprised that Carol Monaghan's story of the 8 year old being left in a wheelchair by NHS treatments did not make the headlines. It has everything the press loves.

 

I think this is highly relevant. One already detects a note of caution which has been introduced into the debate. When this is noted alongside the comments about uncertainty as to whether any article will actually appear, there is cause for concern. I must say that I was surprised at all the disclaimers regarding support in any way for inappropriate behaviour on the part of patients. There is absolutely no need for such comments. There is no need to mount a defence for offences with which one is not charged.

 

Well said, Ravn. If the journalist is reading this, he/she would do well to look at a couple of articles written by another journalist in the past 2 years, here in Bristol, for more background/context. I met her in a cafe & was quoted in the first article. I urged her to watch Voices online, and later she emailed me saying it had reduced her to tears.

https://thebristolcable.org/2018/05/from-bed-and-the-streets-campaign-for-me-equality/
https://thebristolcable.org/2017/07...bristol-university-and-controversial-science/

 

Great idea.

It can have 2 sections:

BPS attacks on ME patients (vexatious, embedded medical error and abuse, Keith G, etc)

BPS attacks on defenders of ME patients (Dave, Countess, MP Carol, etc)


Maybe a 3rd section:

History of BPS attacks on different patient groups

 

Also about choosing battles, and timing.