The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
Discuss the article on the Forums.

(The Canary) "Controversial online therapy to be used in childhood trial" by Conrad Bower

Discussion in 'General ME/CFS News' started by Tom Kindlon, Nov 1, 2016.

  1. Tom Kindlon

    Tom Kindlon Senior Member

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    http://www.thecanary.co/2016/11/01/...sed-childhood-chronic-fatigue-syndrome-trial/

    Conrad Bower has previously written sympathetic articles on ME/CFS.



     
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  2. Esther12

    Esther12 Senior Member

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    Seems they're getting their analysis from Kindlon's twitter feed... could do a lot worse!
     
  3. AndyPR

    AndyPR Senior Member

    Facebook commenting is possible on the article, the more comments the better, even if it's just a thank you message.
     
  4. aaron_c

    aaron_c Senior Member

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    Hi Yall. I wrote a response for their website, but I wanted to check in with yall--see if I got the details right.

    Here it is:

    Thank you Conrad Bower for producing a fairly balanced article on ME/CFS. I could not agree more that "The scientists of the FITNET-NHS trial should use the PACE trial as an example of how not to carry out medical research." Unfortunately it seems they are already failing (or planning to fail) this test in a few respects:

    First, their page on the NHS website (http://www.nets.nihr.ac.uk/projects/hta/14192109) leaves out a critical objective measure that has proven problematic for advocates of GET in the past, namely the use of pedometers. Although they plan to look at school attendance and parental employment, they don't appear to be looking at the quality of schoolwork or mental function outside of subjective self-reporting--which seems important, given the suspicion among many of us that GET/CBT will essentially serve to drag sick kids to school and rely on confirmation bias to improve self-reporting scores.

    Second, the enormous media blitz that falsely touts the "successful" Danish Dutch study as its inspiration might easily influence self-reported outcomes in an unblinded study such as this. Patients being treated with the "exciting" and "new" treatment will know they are getting that treatment, and patients in the control group will know they are not. Parents who enroll their children in this study will have high hopes that they will communicate to their children. Given this tremendous amount of peer and societal pressure directed on individuals at impressionable ages, how are we supposed to trust anything but objective outcome measurements?

    Finally, the study appears to make no effort to include the subset of patients who are severely ill, while it enthusiastically accepts patients whose symptoms are not severe or long-standing enough to be included in more conservative estimates of the patient population. In short, some of their participants may not have ME/CFS. The chief concern is that some patients will simply be depressed--and if 10% of the patients get all better because time or CBT cured their depression, we will spend the next ten years hearing about how ten percent of the patients in the FITNET trial were able to recover entirely. This in turn will be touted as proof that GET/CBT will cure ME/CFS for those willing to give it a try. Much of this could be avoided by using the more thorough Canadian Consensus Criteria.

    Given these not insignificant failings, we don't need to wait five or more years to find out that we have once again wasted taxpayer money--we know it now! In fact, these critiques are not new--they have been leveled at past GET/CBT trials such as PACE. There is no excuse for funding or promoting poor quality research like the FITNET trial promises to be.
    In particular: Am I correct in saying that they used pedometers that one time...and does anyone have a link to the study where they found that pedometer activity did not match up with self-reported activity outcomes?
     
    Last edited: Nov 2, 2016
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  5. Esther12

    Esther12 Senior Member

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    Looks good to me. Thanks for trying to get something posted.

    Personally, I'd simplify it by leaving out the reference to participants having depression and the Canadian Consensus Criteria, but that just reflects my priorities.

    The actometer data came from three CBT trials (so could change your GET reference to CBT/GET), and was then released as a meta-analysis showing that CBT was not associated with an improvement in objectively measured activity levels, but only self-report (the researchers do all they can to put a positive spin on it): https://www.ncbi.nlm.nih.gov/pubmed/20047707

    There was a recent GET study that used actometers, but it was looking at 'chronic fatigue', not CFS (there are a couple of threads on it, eg: http://forums.phoenixrising.me/inde...t-seems-to-be-lacking-a-decent-control.20876/ )
     
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  6. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Actometers and pedometers are two different things. Actometer data is what we are interested in.
     
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  7. Wildcat

    Wildcat

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    @aaron_c .... I don't want to confuse things, but was the earlier FITNET study Danish or From the Netherlands?

    BBC http://www.bbc.co.uk/news/health-37822068
    "Trials of the scheme in the Netherlands showed 63% of the patients given therapy had no symptoms after six months, whereas just 8% recovered without it."
    .
     
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  8. aaron_c

    aaron_c Senior Member

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    Thanks Wildcat, you are absolutely right. Got Danish and Dutch mixed up. Apologies to everyone that offends!
     
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