Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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"Sick and Tired" Undiscovered podcast on PACE trial & CFS (by members of the Science Friday team)

Discussion in 'General ME/CFS News' started by Tom Kindlon, May 29, 2017.

  1. Tom Kindlon

    Tom Kindlon Senior Member

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    I received this email today.
    ---

    I had a long phone call with her at the end of last year and exchanged some emails. I can't remember now what I said. Elah explained to me that this is a new-ish podcast series from members of the (well-known) Science Friday team.
     
  2. AndyPR

    AndyPR Senior Member

    Last edited: May 30, 2017
  3. wdb

    wdb Senior Member

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    London
  4. Esther12

    Esther12 Senior Member

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    Any responses from PACE? If they're coming out with new stuff I'd like to wait til I was feeling a bit sharper before listening.
     
  5. AndyPR

    AndyPR Senior Member

    They have a few comments from Peter White, more of the usual waffle about "these treatments aren't a cure but they are the best thing out there", as well as the sob story of how doing bad science (my addition there obviously) has meant that him and the others have had a rough time of it. Overall I thought the presenters were supportive of the efforts everybody has made to point out all the flaws with PACE.
     
  6. char47

    char47 Senior Member

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    thanks so much to Science Friday for covering this.
    I dont have the wherewithall to listen at the moment, but I'm feeling a bit frustrated with the little 'write up' about it on the podcast page though....
    As per usual it wrongly states that there is a battle 'between patients and scientists'... that is factually and importantly INCORRECT. This usually made mistake infuriates me:bang-head:
    It is NOT a battle between scientists on one side & non scientist patients on the other.... it's a battle between 2 groups of doctors&scientists, one group of whom are involved with patients & have their support.

    This distinction is critical imho, because the idea of 'patients vs scientists' is a subtle branding of the debate as 'educated/scholarly/scientific' vs 'people who dont understand & dont like what science tells them', a branding that suits the PACE PIs & it's fans well. It's misleading & I'm certain is a key factor in why the entire scientific community isnt up in arms over PACE. It makes it so much easier for the CBT fanclub to present all critisism as "they dont understand & just dont want to accept the stigma of a mental illness". And people are generally so strapped for time & attention that unless they have a personal reason to, they're not going to invest their time & energy looking into the situation if they think it's just a bunch of patients moaning because they dont like the results of a scientific research project. I'm sure it's why people just skim over it & dont take the time to look into the real situation.
     
  7. TiredSam

    TiredSam The wise nematode hibernates

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    It's a battle between scientists and the PACE authors.
     
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  8. Mrs Sowester

    Mrs Sowester Senior Member

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    @char47 They do make the point it's science versus science and not science versus patients at the end
     
  9. Tom Kindlon

    Tom Kindlon Senior Member

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  10. Sean

    Sean Senior Member

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    It's a battle between PACE and reality.

    And reality will always win, eventually.
     
  11. alex3619

    alex3619 Senior Member

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    I like they included a link to the ME recovery song on their web page.
     
  12. alex3619

    alex3619 Senior Member

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    I am only part way through this podcast, but I am highly enjoying it so far.
     
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  13. Esther12

    Esther12 Senior Member

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    My notes as I listened:

    I'm British, so can find the personal story aspect of this sort of thing a bit cringey. Actually had to pause the start a few times to get through it.

    I thought that it was not great having PACE introduced in terms of Julie feeling insulted about the claims of benefit from psychotherapy [also later on in the podcast Julie explicitly stated that it was not that she was offended, but that it was that the claims were not true, so it felt a bit like the podcast was creating a simiplified & emotionaly driven intro with her]. I'd have much prefered them focusing on the details of the science, which is what matters.

    LOL at the clips from @Graham 's videos though, brilliant... I wish they'd included links! [They did include the video of the singing sunflowers on their website! http://www.undiscoveredpodcast.org/sick-and-tired.html] My partner had a slight concern that the clips played were too brief to show that there was real substance behind what was being said, and that they could seem silly? Given how the rest of the show went, I don't think that's a concern.

    Sharpe utterly evasive on recovery. Maybe the show lets PACE rather get away with claiming CBT/GET better than nothing though? - doesn't really go into the problems with bias in a nonblinded trial... but did mention null results for employment and fitness outcomes.

    I wish they'd pushed Sharpe more on details. We really got nothing interesting from him. Also it was a bit infuriating having Sharpe talking about how hard it was for the researchers given the way they've chosen to conduct themselves. My partner wondered if that self-pity from Sharpe would play badly with most of the audience, especially in contrast to Matthees being too ill to be interviewed?

    Maybe they interviewed him before they felt they had enough of a grasp of the details to really push him? I think PACE is complicated enough that a lot of people will be nervous about taking on the researchers, even if they have a strong hunch that they're dodgy.

    I thought that bit with Julie on 'self-correcting science' was very good.

    Overall: PACE won't like this, so that is good. Great to have more people discussing these issues in a reasonable way, but also, I think that they really could have done with a podcast that's double the length.

    Maybe this points to PACE's new defensive position? Give up on defending the recovery claims (but don't retract) while still arguing that CBT/GET is better than nothing and that they have been unfairly treated by overly critical patients. I think that they will have a lot of the prejudices of the UK medical establishment on their side with that. IMO: The best response from patients is to stay cautious in the claims we make and keep pushing for more discussion and debate on the details. The more info we get out of them, the worse they end up looking.
     
    Last edited: Jun 1, 2017
  14. user9876

    user9876 Senior Member

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    I suspect that when face to face with someone they can't defend the recovery claims but they have in all of their recent comments and statements. So I suspect they will still be pushing the recovery message in an unchallenging environment.
     
  15. AndyPR

    AndyPR Senior Member

    Undiscovered have a short survey that they say will help the out with the next season of podcasts they do. If you have 5 mins to fill it out, then we can encourage them to perhaps look more at ME. Make sure to say that you listened to the "Sick & Tired" episode.

    https://www.surveymonkey.com/r/YHCXJDX?source_code=[social
     
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  16. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    I miss Science Friday. My local radio station no longer carries it. :aghhh:
     
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  17. AndyPR

    AndyPR Senior Member

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  18. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    I have a dial-up connection. Out here in the boondocks we have really poor telephone lines. My connection speed is supposed to be 56K. I took a look just now and it says the connection is actually 492K, which is typical. If I do a download or update that shows me the actual speed, it is usually around 5 or 6K. I have seen it go into the byte range. This is not fast enough to download continuous audio. I can pause a very short video, that watch it after it has buffered. I cannot see any way to buffer the audio.

    Thanks for the link. It does look like they have transcripts on the site, so I can read the ones I am most interested in. It was nice to be able to listen on the radio while doing something else, though.
     
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  19. Esther12

    Esther12 Senior Member

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    Is this a new addition to their page? Looks like they've added link to two the two duff Cochrane reviews which ignore the problem of relying on subjective self-report outcomes for nonblinded trials:

    http://www.undiscoveredpodcast.org/sick-and-tired.html

    If it is an addition, I wonder what led to that.

    The poor quality work done by the Cochrane Collaboration is a major problem for making progress. Anything we can do ot pressure them to start doing their job properly?
     
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  20. lafarfelue

    lafarfelue Senior Member

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    Emailing them directly (rather than completing the survey?) and perhaps encouraging some of our scientist and medical doctor supporters/champions to email them too?

    undiscovered @ sciencefriday.com (note: I've included spaces around the @ symbol to help stop spambots from doing weird things with their email address)
     
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