ABC radio - Comparison of treatments for CFS - PACE trial

[Sean]

Swan is definitely not stupid or naive about establishment politics.

 

[Angela Kennedy]

Swan is definitely not stupid or naive about establishment politics.

So I guess the question is - why this behaviour from him?

 

[Esther12]

Sadly - we've got to be aware of the position we're starting from.

It's angry patients suspected of being mentally disturbed vs respected Professors.

In any debate or discussion, the presumption will be that we are wrong and stupid. Also - there are some CFS patients who will post things that are clearly wrong and stupid, whereas those speaking on behlaf of Pace will all be professionals who will, at the very least, know how to present their wrong and stupid ideas in ways that sound plausible and respecatable.

It's a really difficult situation to argue your way out of, when so many biases and prejudices are stacked up against us, and the issues are so very complicated that few people will be interested in taking the time to understand them - better to just trust the experts!

(I've got nothing constructive to add I'm afraid. I am exhausted after some travelling - maybe I'm just in a bad mood?)

 

[Snow Leopard]

Dr Sharpe responded to Tom's question (in the comments section):

I would just like to respond to the comment about data from measures listed in the protocol not being reported in the Lancet paper. This is simply because there is too much data to adequately report it in a single paper (the Lancet like most other journals has a strict word limit of 4000 words). There is a publication plan for this, so far unpublished, data which includes papers on: 'recovery'(careful reading will make it clear that recovery is not reported in the Lancet paper, longer term outcome, mediators and moderators of response, and economic aspects including employment. I hope this is helpful.

Michael Sharpe
Co-PI PACE trial

Which means that the following claims by Bleijenberg and Knoop in their editorial about 'recovery' is bullshit.

Graded exercise therapy and cognitive behaviour therapy might assume that recovery from chronic fatigue syndrome is possible, but have patients recovered after treatment? The answer depends on ones definition of recovery.3 PACE used a strict criterion for recovery: a score on both fatigue and physical function within the range of the mean plus (or minus) one standard deviation of a healthy persons score. In accordance with this criterion, the recovery rate of cognitive behaviour therapy and graded exercise therapy was about 30%although not very high, the rate is significantly higher than that with both other interventions.

 

[Angela Kennedy]

Sadly - we've got to be aware of the position we're starting from.

It's angry patients suspected of being mentally disturbed vs respected Professors.

In any debate or discussion, the presumption will be that we are wrong and stupid. Also - there are some CFS patients who will post things that are clearly wrong and stupid, whereas those speaking on behlaf of Pace will all be professionals who will, at the very least, know how to present their wrong and stupid ideas in ways that sound plausible and respecatable.

It's a really difficult situation to argue your way out of, when so many biases and prejudices are stacked up against us, and the issues are so very complicated that few people will be interested in taking the time to understand them - better to just trust the experts!

(I've got nothing constructive to add I'm afraid. I am exhausted after some travelling - maybe I'm just in a bad mood?)

This doesn't mean we have to accept or take up positions of 'guilty' of those misrepesentations of the community and those concerns. These concerns, from the rejected letters, from the trail of critiques I have made since 2004, from the publication of the PACE trial identifier by One Click since 2004, from the critiques made by Hooper et al, are substantive and legitimate.
People aren't making them for fun or to be crazy meanies.

As there are currently no 'experts' in a position to protect people from the dangers of this fundamentally flawed trial, the community and it supporters (like Malcolm Hooper) have no option but to protect each other.

Horton clearly did NOT know how to present a reasonable position. His prejudicial and inflammatory outburst on ABC should be one aspect of any grievance procedure around PACE and its publication.

 

[insearchof]

So I guess the question is - why this behaviour from him?

Why? How about for no other reason than simply because he can (for reasons explored by Esther12) and because I am sure, that whilst many will pen a few quick words on the ABC web page, few will take the time to write a formal complaint and object to his remarks and general approach taken in the interview.

 

[Snow Leopard]

As there are currently no 'experts' in a position to protect people from the dangers of this fundamentally flawed trial...

I think Dr Jason's response would have been interesting if interviewed on Swan's show.

The last interview about CFS was Myra Mclure before that, Karen Wallman (on her 'paced' graded exercise results from Western Australia. Interestingly, her results showed that there was not a statistical significant difference between activity levels of GET recipients and 'relaxation/flexibility therapy' controls at the followup).

A certain faction is arguably playing a better PR campaign than us.

 

[insearchof]

A certain faction is arguably playing a better PR campaign than us.

Drop the Australian ME CFS Society a note.

 

[Angela Kennedy]

Why? How about for no other reason than simply because he can (for reasons explored by Esther12) and because I am sure, that whilst many will pen a few quick words on the ABC web page, few will take the time to write a formal complaint and object to his remarks and general approach taken in the interview.

But, as Sean is alluding to, why would someone like Norman Swann, who apparently has a reputation for rigour and rationality (am I right there, Sean?) behave in such a way? His Twitter comments were asinine and mean, his programme a brown-nose to Horton and Sharpe, an attack on reasonable and substantive concerns. Has he allowed himself to be taken in by those attacking the patients, like Horton? This makes Swann naive at best (contrary to Sean's description). Or it means he's deliberately behaving unethically, whether by choice or compulsion. That's some pretty serious stuff on that programme.

I know we, as a community, are used to being treated badly, to being misrepresented and bad-mouthed, but what was said on that programme was outrageous and unethical. Why was it allowed to happen, basically? Where is Norman Swan's intelligence and ethics and rigourous analysis?

 

[Angela Kennedy]

I think Dr Jason's response would have been interesting if interviewed on Horton's show.

The last interview about CFS was Myra Mclure before that, Karen Wallman (on her 'paced' graded exercise results from Western Australia. Interestingly, her results showed that there was not a statistical significant difference between activity levels of GET recipients and 'relaxation/flexibility therapy' controls at the followup).

A certain faction is arguably playing a better PR campaign than us.

But Leonard Jason is not quite enough. He certainly has not demonstrated a knowledge of the vast range and depth of the problems in PACE. That's no criticism as such, just the observation. It might have been 'interesting'- but for the wrong reasons.

Has anyone, by the way, read Hooper's document? I have, I should say, twice. It's very substantive.

We don't have access to 'PR' or a docile media as a community. The misrepresentation of this community as powerful is ridiculous.

 

[insearchof]

Angela, I understand where your coming from.

It is still very disappointing for those of us who expected a lot more of Mr Swann and the ABC and I am not sure that you will ever find the answer to the question you pose.

On a more positive note though, you could view it through this lens: that our voices of protest and our collective message, that our days of our compliance with the status quo are over - are now being registered. It is clear that more patients than ever before, (especially in the last 2 years) are making energetic posts on web sites, writing letters to medical journals and starting to take action. This must be quite a shock to the powers that be - and their response is therefore predictable: shout out louder and drown out our voices (In the form of a strong media campaign etc).

So maybe, this is a strange sign - that the community's focused and well channelled anger -in the form of its advocacy initiatives, is hitting the mark.

Consequently, perhaps this is encouraging confirmation that we persist and continue doing what we have been up to this point, and keep the pressure up.

So I would ask people to spend a little more time composing those ''energetic'' forms of literary protest - not here at PR, but in the forms of emails and letters to Mr Swan and his employer the ABC, as well as an email to the Australian ME CFS Society asking them to take action on this matter as well.

 

[Hope123]

Can I quote Gandhi now?

"First they ignore you, then they ridicule you, then they fight you, then you win." -
-- Mahatma Gandh

I think we're a little past ridicule and onto the "fight" part here.

But really this isn't about a fight. I understand there are extremists in every group, even among people with ME/CFS, but I would hope clearer minds would have really thought this matter through on the radio program. Do they really want to be put down in posterity as the person or group that disaparaged a group of sick people who, in the end, really just want to get back to a half-way normal life? Do they subscribe to the saying "Kick them when they're down"?

 

[insearchof]

Can I quote Gandhi now?

"First they ignore you, then they ridicule you, then they fight you, then you win." -
-- Mahatma Gandh

I think we're a little past ridicule and onto the "fight" part here.

But really this isn't about a fight. I understand there are extremists in every group, even among people with ME/CFS, but I would hope clearer minds would have really thought this matter through on the radio program. Do they really want to be put down in posterity as the person or group that disaparaged a group of sick people who, in the end, really just want to get back to a half-way normal life? Do they subscribe to the saying "Kick them when they're down"?

If objecting to Pace Trial and Hortons remarks are not indicative of a battle going on, then I don't know what is.

Clearly in the absence of evidence to the contrary,this is not a battle that the radio station has a personal interest in other than as a topic to possibly increase ratings. So perhaps an element of controversy was preferable for this reason, than an approach reflecting clearer minds. I see the Horton and Sharpe camp, as the camp shouting louder...and using Mr Swann and the ABC as the vehicle to do so.

The question you raise is a good one and I hope you write to Mr Swann and put that to him directly.

 

[insearchof]

Another suggestion to counter the lack of balance presented on this program, people might like to write to Media Watch and complain about the way Mr Swann handled this matter and request the Media Watch Program ABC take up this issue. Whether Jonathon Holmes is willing to take one of his own journalistic colleagues to task, may be a problem, but it is worthwhile attempting, as this is exactly the kind of matter that this program normally covers.

Even if the program fails to give this issue coverage, an avalanche of letters to the program, wont bode well for Mr Swann at the ABC.



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Dont forget to include references to Mr Swanns tweets

 

[markmc20001]

Great job on the responses everybody is giving on this pace trial and the interview. Looks like you definitely have hit a nerve!

The fact they have to respond to all the patient commentary says something for sure! This is making them answer some questions to somebody, and it's giving them trouble somehow.

 

[TinyT]

Submitted two responses, just waiting for them to come up

 

[biophile]

The pathological blindspot of PACE enablers is scary

I listened to the broadcast and later read the transcript. Angela's prediction was correct afterall, it was a complete whitewash. Although we can't expect much from a routine radio broadcast on health topics, it was heavily biased and one sided. It did however provide some insight into how Sharpe and Horton view the PACE trial, and their disingenuous attitude towards the criticism. Still working on a response to the transcript, which I may post later if I think it adds anything not said already.

Ellen Goudsmit in particular has been complaining about the editorial bias of the Lancet for years, and after hearing Horton's comments on ABC Radio I would be very surprised if there was no editorial bias in the Lancet. On another thread, [Zoe Mullan (Lancet) wrote to Angela Kennedy]: "The trial received unanimous support from three clinical reviewers and a statistician." I guess this was the "endless rounds of peer review" that Horton alluded to on ABC Radio? If "three clinical reviewers and a *statistician*" were unable to spot the flaws and factual errors, then the reliability of the Lancet is in question.

Norman Swan on Twitter (thanks Dolphin):

- "Tomorrow's Health Report, good news on chronic fatigue but some patient groups don't like it: big time vilification."

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

[Dolphin on Norman Swan's Twitter comments]: 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 wrote: He can't be that stupid though, surely? Or can he?

Sean wrote: Swan is definitely not stupid or naive about establishment politics.

Unfortunately this is a bad sign from Norman Swan. Almost all of the comments on the ABC website are pointing out serious flaws with the study which anyone can verify on their own, and he interprets these as "big time vilification" and "the ME lobby is on the attack". It suggests he hasn't even looked into any of the points raised by the comments, instead he seems to interpret and automatically dismiss all criticism as vilification without considering the possibility that what he calls the "ME lobby" have raised fundamental issues with the trial.

Esther12 wrote: Sadly - we've got to be aware of the position we're starting from. It's angry patients suspected of being mentally disturbed vs respected Professors. In any debate or discussion, the presumption will be that we are wrong and stupid.

Yes, this is a fundamental problem. Such appeals to authority are getting really ridiculous and now even promoting incompetence when obvious flaws and even factual errors are being ignored as a result.

Esther12 wrote:

Also - there are some CFS patients who will post things that are clearly wrong and stupid, whereas those speaking on behalf of Pace will all be professionals who will, at the very least, know how to present their wrong and stupid ideas in ways that sound plausible and respectable.

It's a really difficult situation to argue your way out of, when so many biases and prejudices are stacked up against us, and the issues are so very complicated that few people will be interested in taking the time to understand them - better to just trust the experts!

True, but overall the comments on the ACB Radio website aren't bad. Swan probably hasn't even looked at them.

Angela Kennedy wrote: This doesn't mean we have to accept or take up positions of 'guilty' of those misrepresentations of the community and those concerns. These concerns, from the rejected letters, from the trail of critiques I have made since 2004, from the publication of the PACE trial identifier by One Click since 2004, from the critiques made by Hooper et al, are substantive and legitimate. People aren't making them for fun or to be crazy meanies. As there are currently no 'experts' in a position to protect people from the dangers of this fundamentally flawed trial, the community and it supporters (like Malcolm Hooper) have no option but to protect each other.

Well said.

Angela Kennedy wrote: Horton clearly did NOT know how to present a reasonable position. His prejudicial and inflammatory outburst on ABC should be one aspect of any grievance procedure around PACE and its publication.

Agreed. Horton was out of line and as far as I'm concerned he is now an accessory (to the "crime" of tolerating flaws and errors in the Lancet).

Angela Kennedy wrote: But, as Sean is alluding to, why would someone like Norman Swan, who apparently has a reputation for rigour and rationality (am I right there, Sean?) behave in such a way? His Twitter comments were asinine and mean, his programme a brown-nose to Horton and Sharpe, an attack on reasonable and substantive concerns. Has he allowed himself to be taken in by those attacking the patients, like Horton? This makes Swann naive at best (contrary to Sean's description). Or it means he's deliberately behaving unethically, whether by choice or compulsion. That's some pretty serious stuff on that programme. I know we, as a community, are used to being treated badly, to being misrepresented and bad-mouthed, but what was said on that programme was outrageous and unethical. Why was it allowed to happen, basically? Where is Norman Swan's intelligence and ethics and rigourous analysis?

Very good question. It really is incredible how blind, smug and glib the supporters or enablers of the PACE trial have been towards the criticism, our concerns are just dismissed without a second thought. What scares me is that the dismissal is now so entrenched that not only glaring flaws are tolerated but even factual errors are being ignored, while Horton can appear on a national radio broadcast feeling proud about the Lancet's "peer review process" of the PACE trial which clearly failed to do a proper job. How does the saying go, "pride before a fall"?

We as a community are not stupid, we can do fact checking and basic calculations if health permits. The peer preview process of the Lancet has been found wanting. I looked up The Lancet on Wikipedia and it seems they are no stranger to controversy. Publication of the PACE trial was at least as bad as many of the examples given on Wikipedia.

Angela Kennedy wrote: Has anyone, by the way, read Hooper's document? I have, I should say, twice. It's very substantive.

Horton says it is 43 pages, but the word document I downloaded is 70 pages? Anyway, I have only skimmed through it so far, but from what I have seen so far, his document raises serious objections to the PACE trial which are worth considering. It covers the major issues and Horton or White et al are going to have a hard time responding to it. Calling it a "diatribe" from alleged fringe radicals in an attempt to discredit the arguments doesn't change the fact that we have a good case against PACE.

At this stage, White et al have the upper hand in terms of influence and audience, but they are on some pretty shaky ground. It is possible PACE will get away with publishing additional spin which general audiences will swallow again, but they have been forced to respond in the first place because their initial spin has been exposed; PACE responding with more spin won't fool the ME/CFS community. We now have access to the original document so we will know exactly how much cherry picking and spin has been put into the PACE response.

What would be ideal is: a full retraction (or at least a partial retraction?), an independent re-analysis, and an apology for providing ambiguous/misleading impressions to the news media press about patients getting back to "normal". I am still willing to accept that CBT/GET can on average have a relatively small effect on a minority of people diagnosed with Oxford criteria CFS, but I think in the fullness of time the PACE trial will eventually be exposed for what it really is, a colossal piece of spin which the Lancet either fell for or was complicitly involved with.

Angela Kennedy wrote: The undeserving sick quote needs to be looked in the context of the whole speech he gave.

Does anyone have the full speech?

Angela Kennedy wrote: One thing I've noticed is that Wessely and Sharpe both write and speak with frequent non-sequiturs.

And don't forgot the copious amounts of guilt by association, usually without making direct statements and leaving room for backpedaling. This would be like me going on about how psychiatry reeks of quackery, has a history of unproven ideology and a bad reputation for psychobabble, and out of all medical professions has the lowest rate of religious belief; then I would make no firm conclusion but finish up with saying how some of Wessely et al's views aren't supported by evidence and he doesn't attend church. Technically, I can still claim I was only speculating and never said directly that "Wessely is a godless quack" but it can be implied in the reader's imagination. That is the sort of writing style Wessely strikes me as having.

I think someone recently (maybe it was Angela?) commented somewhere that Wessely's style also seems to be laced with a subtle sarcasm. I think I agree with that assessment/suspicion.

 

[Bob]

Invest in ME have sent an open letter to Dr Richard Horton, the editor of The Lancet, along with an invitation to the Invest in ME conference, in response to his Australian radio broadcast...
http://www.investinme.org/IIME Letter 2011-04 Lancet.htm

 

[biophile]

I sent an email (not a letter submitted for publication) to Horton which demonstrates factual errors in the Lancet regarding normative data and physical function scores, and then asks him to consider the possibility that if such basic factual errors went undetected despite "endless rounds of peer review" then perhaps the ME/CFS community have been making other important points which have also gone undetected by the Lancet. Originally I was working on that email for Swan but I couldn't find Swan's email address and then I realised the same argument would be better directed towards Horton.

 

[Angela Kennedy]

I sent an email (not a letter submitted for publication) to Horton which demonstrates factual errors in the Lancet regarding normative data and physical function scores, and then asks him to consider the possibility that if such basic factual errors went undetected despite "endless rounds of peer review" then perhaps the ME/CFS community have been making other important points which have also gone undetected by the Lancet. Originally I was working on that email for Swan but I couldn't find Swan's email address and then I realised the same argument would be better directed towards Horton.

This was an excellent idea biophile. I think that will be VERY useful for people as this issue progresses. Thank you.