Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Swan is definitely not stupid or naive about establishment politics.
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 There is a publication plan for this, so far unpublished, data which includes papers on: 'recovery'(careful reading will make it clear that recovery is not reported in the Lancet paper, longer term outcome, mediators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
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.
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?)
So I guess the question is - why this behaviour from him?
As there are currently no 'experts' in a position to protect people from the dangers of this fundamentally flawed trial...
A certain faction is arguably playing a better PR campaign than us.
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.
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.
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"?
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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.
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.
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!
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.
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.
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?
Angela Kennedy wrote: Has anyone, by the way, read Hooper's document? I have, I should say, twice. It's very substantive.
Angela Kennedy wrote: The undeserving sick quote needs to be looked in the context of the whole speech he gave.
Angela Kennedy wrote: One thing I've noticed is that Wessely and Sharpe both write and speak with frequent non-sequiturs.
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.