The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
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Proposed new training module for Australia: CBT and GET

Discussion in 'Action Alerts and Advocacy' started by Sea, Mar 28, 2016.

  1. Sea

    Sea Senior Member

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    https://anzctr.org.au/Trial/Registration/TrialReview.aspx?id=370222&isReview=true

     
  2. Sean

    Sean Senior Member

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    Level One evidence

    :meh:

    And citing Prins, twice in five refs, is a warning bell and a half.

    :grumpy:
     
  3. CCC

    CCC Senior Member

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    Time to ask for a copy of the training material.

    If the science about GET/CBT is not only not settled, but perhaps about to be exhibit A in how not to do science, then a training package is perhaps too early. It will also be humiliating for the researchers at UNSW.

    I've been following the PACE debate, but not as closely as I would if I lived in the UK. Can someone with more UK experience perhaps point us to some useful links to help the argument.
     
    Last edited: Mar 28, 2016
  4. CCC

    CCC Senior Member

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    This was the good doctor's PhD:
    http://www.unsworks.unsw.edu.au/pri...cId=unsworks_1474&fromSitemap=1&afterPDS=true
    • Title:The role of the intertrial interval in the loss of context conditioned fear responses.
    • Description: Eight experiments examined the role of the intertrial interval in the extinction of conditioned fear to a context. Rats were shocked in one context (A) but not in another (B) and freezing responses to Context A were extinguished. ...
     
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  5. TiredSam

    TiredSam The wise nematode hibernates

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    And now she wants us to be her rats.
     
  6. worldbackwards

    worldbackwards A unique snowflake

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    This is a recent article from a well respected source which tears heavily into PACE:

    http://www.stats.org/pace-research-sparked-patient-rebellion-challenged-medicine/

    And David Tuller's lengthy and exhaustive run through the issues, as well as a few other things, can be found here:

    http://www.virology.ws/mecfs/
     
  7. jimells

    jimells Senior Member

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    Maybe we should be grateful for small favors...

    --------
    It's so unbelievable that all the evidence of the failures and harms of GET and CBT, all the evidence of real biochemical anomalies count for absolutely nothing. How is it that so many of these people are willfully blind? It doesn't seem possible there could be so many people being paid to be blind. The Wessely crowd, sure we know they are paid by the insurers, but does it include *all* these researchers everywhere?

    I can imagine this sounds crazy, but sometimes I wonder if we are on the front line of a financial war we are not even aware of. I'm listening to a CBC radio report of people on the US Gulf Coast who now have vague chronic symptoms after exposure to the BP oil catastrophe a few years ago.

    I assume that many of those folks would qualify as Fukuda "CFS". How much disability insurance benefits will the insurers save by claiming they have psychosomatic "CFS" with a two-year limit on benefits due to "mental illness"? And this is only one example of people damaged by toxic exposures.

    In the last 30 years the struggle for gay marriage was started, waged, and won in the US. Meanwhile, the policy of psychosomatic "CFS" has hardly moved a millimeter. How is that possible, other than someone has a very big financial stake in the policy?
     
  8. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    This study doesn't even involve patients. It is an RCT to evaluate clinician's skills in implementing CBT and GET. They've made the assumption that better-trained clinicians will lead to better outcomes for patients. Say what?

    Will they then take their well-trained clinicians and see if they lead to better outcomes for patients or will they just be happy with saying, "Look, we've shown how to brainwash the brainwashers?"
     
  9. Sea

    Sea Senior Member

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    Someone said on Facebook that they have emailed the researcher with a link to Tuller's information.

    I also read that Dr Lloyd confirmed that this training has been triggered by Centrelink asking for doctors to be trained to manage CFS - ie reducing those needing welfare assistance. I don't know how true that is.
     
  10. alex3619

    alex3619 Senior Member

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    And so it begins ... but now we have the tools to fight back.
     
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  11. alex3619

    alex3619 Senior Member

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  12. CCC

    CCC Senior Member

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    I guess that would make it a potential election issue, if the government's aim were to simply pull people off benefits. More likely is that they have responded to senate estimates questions about research funding for CSF, and the prestigious UNSW has managed to get dibs on the dollars.
     
  13. sarah darwins

    sarah darwins I told you I was ill

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    There are very nice careers in it. All they have to do is believe. What else are we going to do with all these psychology grads?

    Here in the UK we have a proliferation of private providers of counselling / CBT etc. for a range of conditions, many of them small groups of OTs, many with NHS contracts. No upside for them in skepticism. Meanwhile GP surgeries are totally overwhelmed with patient numbers — suits everyone (except patients) to have a sizeable group parcelled out to the CBT-factories instead of clogging up doctors' waiting rooms.
     
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  14. Snow Leopard

    Snow Leopard Hibernating

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    Any evidence of this, or just a rumor?

    Keeping in mind the PACE study along with other CBT studies have not found any beneficial effect on employment outcomes. (Actually, the PACE study led to substantially more people claiming welfare, regardless of the trial group).
     
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  15. CCC

    CCC Senior Member

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    I've been around the research sector enough to think it's almost certainly money and mates in the departments. Even if this study isn't government funded, successful grants build up the case for future funding applications.
     
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  16. Sea

    Sea Senior Member

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    A person on the ME/CFS Australia facebook page claims a direct conversation with Lloyd. Not knowing this person I wouldn't regard it as evidence, which is why I didn't word it as such, but I'd say it's a step-up from hearsay
     
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  17. Justin30

    Justin30 Senior Member

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    Send this info to friends.

    Get them to write emails to the Mason Foundation that gave the grant.

    The last thing we need is more wasted money on PACE type BS......
     
  18. simeyss

    simeyss

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    Writing to the Mason Foundation would be very helpful.
    In addition to this RCT of the GET/CBT online course, there are several other ME/CFS behavioural studies which they have funded recently:

    Video game exercise intervention (SA researcher):
    https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=370224&isReview=true

    Study of Cognitive Activity Therapy (GET for cognitive symptoms) (Lloyd's group:
    http://www.ncbi.nlm.nih.gov/pubmed/26995250

    And email confirmation from Sophie Li (researcher for the RCT for online course) that they are also undertaking a study to find improved ways to measure pacing (no specific details on that one).

    The Mason Foundation is one of the few dedicated ME/CFS funders in Australia, and they'd funded some great projects in the past, so this is a really worrying trend.
     
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  19. Justin30

    Justin30 Senior Member

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    Hi @simeyss,

    I am not from Australia but would like to well to visit their one day when they figure out how to fix me or I dind out how to fix me.

    I did email them and so should everyone else that cares about about having PACE and these rediculous treatments stoped.

    I have template that can be easily adjusted to get your points in. Contact me if you want it.

    Any research that is not associated with Biological Work on well defined ICC/CCC patients should be contested regardless of where you are from.

    So many people write long...messages on PR and want change to occur yet.....i question how many PR MEMBERS will actually stop writing on PR and send an email to stop rediculous wasteful research.

    I write this because I truly wonder how many people would rather argue research and studies instead of writing emails and signing petitions and participating with our organizations?

    I may get called out for this but just thought I need to say something.

    I know many here do countless things for the community and I am grateful to those that do what they can.
     
    simeyss likes this.
  20. taniaaust1

    taniaaust1 Senior Member

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    I got knocked back twice by centrelink for disability pension before I got it, one of the reasons being that I wasn't doing the treatment for it, I assume they meant cbt and get by that as my doctor was doing other treatments eg I was on a lot of supplements
     

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