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Dr Zaher Nahle's No Spin Zone slides

Discussion in 'Latest ME/CFS Research' started by AndyPR, Oct 1, 2016.

  1. AndyPR

    AndyPR Cookies for Tired Sam

    At the recent CMRC Conference, Dr Nahle gave a presentation which 'unfortunately' was hit by technical difficulties and therefore could not be seen on the Livestream - fortunately Dr Nahle kindly uploaded part of his presentation in this post in another thread in a PDF document, here I have simply uploaded screenshots of each page.

    ETA: Dr Nahle explained in this post in another thread that he requested that it not be broadcast due to suffering from the after effects of a cold.

    Page 1
    ZnahleP1.png
    Page 2
    ZnahleP2.png
    Page 3
    ZnahleP3.png
    Page 4
    Znahlep4.png
    Page 5
    Znahlep5.png
     
    Last edited: Oct 7, 2016
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  2. Glycon

    Glycon World's Most Dangerous Hand Puppet

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    Just to be clear, @znahle himself had NOT requested not to have his talk streamed?
     
  3. AndyPR

    AndyPR Cookies for Tired Sam

    I believe that we were given the reason of technical difficulties for why we didn't see Dr Nahle's talk but I can't recall where I saw that now, can anyone clarify?
     
  4. Hutan

    Hutan Senior Member

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    http://forums.phoenixrising.me/inde...c-annual-science-conference-2016.47067/page-2
    Quoted tweet:
    Then a bit later Action from ME posted the following:

    And here's Zaher's post later in that thread:
     
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  5. BurnA

    BurnA Senior Member

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    Shocking. They asked not to live stream a presentation by Zaher which contained question marks over CBT and GET.

    Do these people think we are fools.
    This is the kind of censorship I would expect in Russia or North Korea but the UK ....at a medical conference ?
     
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  6. Glycon

    Glycon World's Most Dangerous Hand Puppet

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    Let's not blow things out of proportion. It could just have been a well-intentionen fib in order to not irritate all the "young men, borderline psychopaths". It doesn't mean Solve ME/CFS is sharing data with the PACE researchers, or anything...

    In Russia, on the other hand, the conference would not only not have been streamed, but would have featured a keynote from an Orthodox-cum-KGB anti-gay activist. And in North Korea we'd all have been executed a long time ago. ;)
     
    Last edited: Oct 1, 2016
  7. Justin30

    Justin30 Senior Member

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    Just goes to show how hard a country is trying to deny that they influenced the world at the hands of there homegrown supposed experts if @BurnA is correct that they censored the CBT/GET component.
     
  8. Cheshire

    Cheshire Senior Member

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  9. AndyPR

    AndyPR Cookies for Tired Sam

    Zaher explained in this post on another thread the reasons why his talk was not broadcast, no consipiracy (this time ;))
     
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  10. TiredSam

    TiredSam The wise nematode hibernates

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    This presentation does rather undermine the argument that the good new scientists are likely to be scared off if vocal ME sufferers keep going on about the politics. Dr Nahle doesn't seem that scared, from what I can tell from the slides he basically walked into the lion's den and told them straight that PACE was a pile of crap.

    Just as the narrative of the vociferous militant borderline psychopathic ME patient has been shown to be entirely fictitious, I wonder how seriously we should take the narrative of the thin-skinned scientist who has got one foot out of the door and is ready to bolt at the slightest sign of controversy or patients wanting to discuss their concerns.

    We have only ever been presented with the threat of losing good scientists in the context of a study involving BPS people. The last time this was dangled over our heads was when we protested against Wallit & co. It just doesn't happen with studies outside the BPS sphere of influence, no-one has told us to mind our Ps and Qs with Fluge and Mella or Ron Davis, in fact from what I have heard @Rose49 has had to put up with a pile of shit on twitter, amazingly without complaining or threatening to storm off. Patient participation is encouraged (thanks @Ben Howell too :thumbsup:).

    That is the bar that the MEGA study should aspire to. Appointing Chowdhury as patient representative, constantly swerving discussion of patients' concerns, and telling us to shush in case we scare off the good guys, falls woefully short of that bar.

    There are many reasons why a good scientist might suddenly leave the MEGA study - they might decide that they can better contribute to ME research away from the incestuous and corrupt medical establishment in the UK, they might decide that they are not minded to play the game the British way, they might discover that they lack confidence in the integrity of the project or some of the people in it and would prefer to no longer be associated with it, they might decide it doesn't meet their standards for a scientific study, they might read an article by Peter White in the Guardian, they might even be mobbed out by the BPS brigade.

    But guess who'll get the blame? Vociferous ME sufferers. No question of anyone else looking at themselves and taking a modicum of responsibility when you can just blame the patients as usual. Well we didn't create this toxic situation. We are not perpetuating it by appointing the wrong people to the wrong jobs. And any problems that arise from it are not our doing.
     
    Last edited: Oct 7, 2016
  11. BurnA

    BurnA Senior Member

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    I have to retract that after Zaher clarified he requested his talk not be streamed.
     
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  12. AndyPR

    AndyPR Cookies for Tired Sam

    Couldn't agree more with this, well said. :thumbsup:
     
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  13. Cinders66

    Cinders66 Senior Member

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    These slides are great and whilst I recognise these weren't pointed against the uk situation specifically I think it's voices from outside the country who are and must be most bold in challenging what is probably quite a hierachal, powerful U.K. Establishment who've spent 15-20 years gong the wrong CFS direction (Although Prof Jonathan has also been a welcome plain speaker) And that applies to journalistic voices too.

    I rewatched aspects of last years CMRC conference and saw how dr Jose Montoya also spoke about apologies, funding and egos in a way most welcome given the context
     
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  14. dreampop

    dreampop Senior Member

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    Looking at slide 2 (depression =/ cfs) it reminds me that depression activates the HPA axis. Gluccosteriods inhibit HPA axis, and antidepressants restore this inhibition. Are there any drugs that activate the HPA axis?
     
  15. Sidereal

    Sidereal Senior Member

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    His slide about CFS and depression is not strictly accurate I'm afraid. HPA axis can be activated, normal or downregulated in depression. Some people with atypical depression have slightly lower cortisol than normal the way some people with CFS do.
     
  16. Barry53

    Barry53 Senior Member

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    This letter of Dr Nahle's indicates how significant a precedent it is that the U.S Goverment's AHRQ (Agency for Health Research Quality) has downgraded its usefulness rating of CBT and GET for ME/CFS. The point he emphasises is the precedent - it is virtually unheard for this sort of downgrading to happen. So the fact that it has, is itself a major indictment of the PACE trial, and the CBT/GET mindset.

    http://solvecfs.org/september-zaher-letter

    An excerpt:-

    "While this process is highly nuanced—and more needs to be done by AHRQ—what is noteworthy is that this decision establishes a precedent. The precedent for rectifying misinformation should not be underestimated in a climate of increased pressure toward the standardization of policies on common data elements for clinical evaluation and other forms of cooperation across government agencies. As such, it is unthinkable that such a precedent from the federal authority that sets the standards on health research quality may go unnoticed ...".

    Thought I'd post it here, to help it not go unnoticed.

    Edit: Also this excerpt: "... this development was triggered by unrelenting requests from the patient community."
     
    Last edited: Oct 15, 2016
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  17. Barry53

    Barry53 Senior Member

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    Looking in the July 2016 Addendum (linked to within Dr Nahle's letter), is the following:-

    "Our sensitivity analysis would result in a downgrading of our strength of evidence on several outcomes which can be attributed to the decrease in power, dominance of one large trial, or lack of trials using criteria other than the Oxford (Sharpe, 1991) case definition for inclusion."

    I do not fully understand what is being said in the above, can anyone help? Is the "large trial" referred to here PACE?

    And:-

    "Blatantly missing from this body of literature are trials evaluating effectiveness of interventions in the treatment of individuals meeting case definitions for ME or ME/CFS."

    I presume this is saying the trials' eligibility criteria are not screening to accurately identify ME or ME/CFS, so the results cannot be relied on to determine treatments for them? Have I got this right?
     

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