ABC radio - Comparison of treatments for CFS - PACE trial

[Esther12]

To be honest Esther, I've been carefully checking the context of a LOT of the quotes from Wessely, Sharpe, White et al as cited by Hooper and Margaret Williams over the years: getting the original papers etc. I was concerned not to be taking the contextualisation of those citations at face value, especially as i have seen allegations of 'cheap points taking out of context' for example on the Bad Science forum (grossly unreliable as the posters on that forum actually are).

Doesn't he/they use the 'undeserving sick' one out of context sometimes? There was a recent thread on here with quotes taken from Hooper's letter to the Lancet, and I thought I remembered some of them being ones taken out of context too... but I was just going off my own memory that time, so it could have been me who was in error.

 

[Katyak]

If the Lancet is going to have Hooper's letter as the sole representation of concerns about Pace, and then let White go to town picking it apart, it will lead a lot of their readers to assume that we are just unfairly attacking researchers. To me, it sounds like the letters sent to the Lancet were read in light of their prejudices about militant and hysterical patients unfairly attacking evidence which does not conform to their own delusions, rather that judged individually and on the merits of the arguments presented. .

Esther - I also wondered, given the disparaging comments from Horton, if the Lancet intends to at least try and hang Hooper out to dry here, giving PW the last right of reply or the chance to seemingly pick him apart. So whether Hooper has on occasions taken criticisms out of context or not, it means that the final word will come from PW.

I also understand the Lancet is sending the PACE paper to be re-reviewed (??). If that's the case, even if the new reviewers aren't colleagues of PW et al, what sort of peer pressure will they be under, given Horton's comments here (and the reputations of PW et al), to say that the science/statistics were valid? So the 'new reviews' could be thrown into the mix too, along with (if we're really unlucky) another editorial, say, about the value of 'proper science and debate' in 'CFS' research. Oh god, I wish I wasn't so cynical - I've lost all faith in the UK medical establishment. I wish it were a more level playing field for Hooper - he's been such a stalwart for the ME community for years.

Does anyone know - did Horton and Sharpe always intend to do this ABC programme, or was it arranged in the aftermath of the criticisms of PACE, as a way of trying to dismiss some of those criticisms.

 

[Angela Kennedy]

Doesn't he/they use the 'undeserving sick' one out of context sometimes?

The undeserving sick quote needs to be looked in the context of the whole speech he gave. One thing I've noticed is that Wessely and Sharpe both write and speak with frequent non-sequiturs. This makes their writing often somewhat incomprehensible (and I would argue 'defended' in that they are conflicted about coming right out and saying what they believe, but are attempting to write rhetorically nevertheless). BUT if you look at the whole argument they give, you can contextualise the quotes. Sharpe has attempted to defend that quote- but when other ME advocates analysed it- his defence was untenable. Sharpe was actually speaking in a context of ME sufferers being undeserving of anything except CBT/GET! Also - if you see Sharpe's writing elsewhere, he is often writing in various modes of disapproval of welfare for ME sufferers, for example.

 

[Esther12]

One thing I've noticed is that Wessely and Sharpe both write and speak with frequent non-sequiturs. This makes their writing often somewhat incomprehensible (and I would argue 'defended' in that they are conflicted about coming right out and saying what they believe, but are attempting to write rhetorically nevertheless). BUT if you look at the whole argument they give, you can contextualise the quotes.

I agree, and am not defending the speech that quote was taken from, which I think is problematic... but the quote, in isolation and out of context is misleading, and when people realise this it does not make them think they should read the whole talk and see if there are other problems with it, but makes them distrust whoever took the quote out of context, and assume that there are no serious criticisms to be made of Sharpe.

The way in which Wessely etc communicate makes it particularly difficult to get a concise quote that illustrates their beliefs - but I don't think we can get arround this by using out of context quotes.

 

[Esther12]

I also understand the Lancet is sending the PACE paper to be re-reviewed (??). If that's the case, even if the new reviewers aren't colleagues of PW et al, what sort of peer pressure will they be under, given Horton's comments here (and the reputations of PW et al), to say that the science/statistics were valid?

One of the problems I sense is that researchers with an interest in psychosocial medicine tend to be supportive of this approach to CFS, and those unfamiliar do not understand it well enough to recognise the problems with psychosocial papers. I'm sure the paper would look fine to a virologist, and anyone whose own career has been spent promoting a psychosocial approach to illness will be unlikely to challenge work that they think is moving medicine in the right direction.

 

[Angela Kennedy]

I agree, and am not defending the speech that quote was taken from, which I think is problematic... but the quote, in isolation and out of context is misleading, and when people realise this it does not make them think they should read the whole talk and see if there are other problems with it, but makes them distrust whoever took the quote out of context, and assume that there are no serious criticisms to be made of Sharpe.

The way in which Wessely etc communicate makes it particularly difficult to get a concise quote that illustrates their beliefs - but I don't think we can get arround this by using out of context quotes.

But these quotes are not out of context.

I've often wondered why Hooper/Williams use quotes with '...' in it. When I've gone and looked for myself (and actually, I would recommend people should not take anything at face value), their use of that has most often been to take away the disjointed non sequiturs and red herrings that are present, in order to make the quote coherent, likely for a sometimes, even often cognitively impaired readership.

To be honest - Hooper and Williams can't win on this one. They write too much - they write too little. But it's people's inability to understand (or allow challenge to cherished but untenable beliefs) that is the biggest problem this community faces- and I don't mean from the community itself, but the average joe and Bad Science (and probably Lancet) reader. They are the ones who aren't bright enough to understand these issues.

 

[Angela Kennedy]

One of the problems I sense is that researchers with an interest in psychosocial medicine tend to be supportive of this approach to CFS, and those unfamiliar do not understand it well enough to recognise the problems with psychosocial papers. I'm sure the paper would look fine to a virologist, and anyone whose own career has been spent promoting a psychosocial approach to illness will be unlikely to challenge work that they think is moving medicine in the right direction.

I think you are right. This means the 'scientists' out there are idiots though. : (

 

[Dolphin]

New(ish) thread: PACE Trial - letters that were not accepted by the Lancet

A new(ish) thread has started:
"PACE Trial - letters that were not accepted by the Lancet":
http://forums.phoenixrising.me/show...-letters-that-were-not-accepted-by-the-Lancet

You can read what other people submitted or submit your own (or alternatively you can PM somebody who has posted on the thread such as me and we'll post it for you, with or without your name).

One can judge whether Richard Horton is being unfair or not. To me, there were plenty of quality points submitted. I'm hoping more letters will also be posted to the thread. It could be a useful resource in the future.

 

[insearchof]

Yeah, thanks for posting. Some of Richard Horton's comments, including the one Sean highlights, must be up for 'unintended irony of the decade' award. And notice how he uses emotive phrases like 'orchestrated response' to suggest underhand tactics, rather than just the ME charities and ME sufferers reacting sensibly to the weak science and media distortion of the paper.

Given Horton has already framed the debate (to take place in the Lancet) as 'sensible, impartial researchers versus orchestrated attacks from fringe groups', it strikes me as odd that he even intends to publish parts of Hooper's so-called 'diatribe'. It's incredibly unprofessional of Horton to frame the debate thus before it's even been published.

I wonder if Horton has ever heard of countertransference. Some of his sentences were just perfect inversions of the actual state of affairs.

Hortons statements and his attitude were far more extraordinary to me, than anything else in this news piece. It was everything other than what you would expect from a man in his position. A very aggressive attack.

I have not read the" diatribe" and know scant details on the substance of Hoopers allegations regarding ethics breaches...but that is a serious complaint, which would put the lancet in the position of having the study reviewed further etc. The lancet would not like this challenge to their authority, I am sure.

However, if Hoopers assertions had no substance, then there would be little need for such an aggressive response. Is it a case of where there's smoke there's fire?

Puzzling to me and of more of a concern, was the less than objective reporting style of the ABC and the repeated reference to patient advocacy groups (a possible dig at the Australian Society and it's press release on the matter perhaps?, though it's hard to say)

All the same, I hope the Society finishes what it started with it's issue of the press release, in taking up the fight on this issue and takes steps to insist that the ABC provide the Society a right of reply, failing which..it should lodge an immediate complaint to the ACMA. Anything less, would be an huge mistake in light of how much trouble this journalistic piece has created.

I would be encouraging people here to drop the CEO of the Australian Society a request that they do just that

 

[Sean]

For those not familiar with the Health Report, this particular show fell well below their otherwise consistently high standard. Very personally disappointing, as they have long been a significant and reliable source of my health news, so it gives me no pleasure to have to be so critical of them.

 

[Angela Kennedy]

For those not familiar with the Health Report, this particular show fell well below their otherwise consistently high standard. Very personally disappointing, as they have long been a significant and reliable source of my health news, so it gives me no pleasure to have to be so critical of them.

Hi Sean,

Yes, I remember us talking on that. You hoped it was going to a balanced piece I remember. Well - you were hoping in good faith. How demoralising to have that faith dashed

Have you thought of mentioning your disappointment and the fall from usual standards perhaps on the comments section?

 

[Sean]

Thanks for that, Angela.

 

[Snow Leopard]

Why would Richard Horton's presence be necessary? Unless on their PR campaign, they thought that journalists might ask difficult questions such as: Why was the paper accepted when there were so many unexplained changes from the published protocol? Is it not scientifically dishonest to publish a protocol and then either not publish half the results and the remaining measures each have their own changes, from scoring methods, loosening up of clinically significant thresholds, looser p values etc.

 

[Purple]

Here is the interviewer's Twitter account which includes several comments from before the show was aired:

http://twitter.com/#!/normanswan

 

[Tulip]

Here is the interviewer's Twitter account which includes several comments from before the show was aired:

http://twitter.com/#!/normanswan

That is just sad

 

[TinyT]

Why would Richard Horton's presence be necessary? Unless on their PR campaign, they thought that journalists might ask difficult questions such as: Why was the paper accepted when there were so many unexplained changes from the published protocol? Is it not scientifically dishonest to publish a protocol and then either not publish half the results and the remaining measures each have their own changes, from scoring methods, loosening up of clinically significant thresholds, looser p values etc.

Thats a very good point. I wonder if he participates in interviews for all/many articles published. I think not.

Very disappointed in Norman Swan & I'm not a follower of his program at all. What astounds me is how other Doctors/reviewers & even the peer-review process have either not picked up on the glaring problems with measurements, bias, poor statistics etc. Hell, I've only completed an undergraduate in B.sc and have a basic understanding in statistics and I can tell that the study & results are pretty darn average (and thats putting it nicely).

 

[Hope123]

As someone once said, "you can't make this stuff up." We don't have to guess at Mr. Horton's views; we can just quote him.

Very odd that a scientific journal Editor would be making such inflammatory remarks in public when one would think they'd want to try to preserve at least a somewhat impartial impersonal image in public. Painting all patients and advocacy groups with such a wide brush just shows the extent of the prejudice we face; would he have said the same thing about any other group of patients or advocacy groups? Contrast his statements with those of the PNAS editor last year (when there was concern about publication of the Alter paper) whose statements were mostly neutral or at least not inflammatory.

If this were the US, I'd be calling Jon Stewart to cover ME/CFS on the Daily Show! He's a master of juxtaposing people's stupid statements with the facts or showing how inconsistent/ hypocritical they are.

 

[Dolphin]

From Norman Swan's Twitter account (in case it can get deleted I thought I'd post it for the record):

Tomorrow's Health Report, good news on chronic fatigue but some patient groups don't like it: big time vilification http://bit.ly/ecFFQd

Haven't broadcast this morning's show yet and already the ME lobby is on the attack! Incredible.

(These two aren't interesting):

Got to go to the studio now. Follow the energetic comments on Chronic Fatigue Syndrome at http://bit.ly/fp9ApV

@weezmgk Sorry for the jargon. Some people call Chronic Fatigue Syndrome Myalgic Encephalomyelitis - hence 'ME'.

He seems to be completely unaware that he was the person who threw the first stone with his Tweet ("vilification") and link to the loaded website description.

 

[Angela Kennedy]

From Norman Swan's Twitter account (in case it can get deleted I thought I'd post it for the record):




(These two aren't interesting):



He seems to be completely unaware that he was the person who threw the first stone with his Tweet ("vilification") and link to the loaded website description.

He can't be that stupid though, surely? Or can he?

 

[insearchof]

He can't be that stupid though, surely? Or can he?

He obviously believes that he can say what he likes, irrespective of whether it creates offense.