Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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AHRQ's responses to comments on draft AHRQ review on CFS

Discussion in 'Latest ME/CFS Research' started by Dolphin, May 29, 2015.

  1. Dolphin

    Dolphin Senior Member

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    http://effectivehealthcare.ahrq.gov/ehc/products/586/2064/chronic-fatigue-disposition-150416.pdf

    Start:

    Jennie Spotila just highlighted this on her blog: http://www.occupycfs.com/2015/05/29/running-in-the-background/

    I don't recall seeing it before but I don't read all the threads on Phoenix Rising

    It's a long document:
    http://effectivehealthcare.ahrq.gov/ehc/products/586/2064/chronic-fatigue-disposition-150416.pdf

    Some times it can be interesting to read about particular experts' views. For example, I found it interesting to read all sorts of weird and wonderful views Peter White had in the comments on the draft NICE guidelines (read here: http://forums.phoenixrising.me/inde...ice-guidelines-insight-into-their-views.1239/) and see that he has comments in the AHRQ document. If anyone sees anything of potential interest, perhaps you could post them as I imagine most of us won't read much of it.
     
    Last edited: May 29, 2015
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  2. Valentijn

    Valentijn The Diabolic Logic

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    Their responses regarding references to Wiborg were pretty disappointing. Basically they claimed it was only a review of other trials, and did not contain new data. But it did include new data (deliberately withheld from the papers which were being "reviewed"), regarding actometers showing no improvement even though patients gave better answers on questionnaires.

    Between that and their approach to the Oxford criteria ("not a good definition, but lets base all of our recommendations for treatment on it"), they either aren't very bright or went into the project intending to spin results.

    At least the IOM did well. Otherwise reading this crap would be leaving me highly pissed off instead of moderately annoyed :rolleyes:
     
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  3. Esther12

    Esther12 Senior Member

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    I started reading it thinking this was for the unreleased P2P report, and was thinking 'oh-oh... they sound a bit rubbish'. (TBH, I spent about 45 minutes getting increasingly concerned, then realised I'd been an idiot).

    A bit interesting to see why the Evidence Review was worse than it should have been.

    I only skimmed through and was mainly looking for interesting replies and the reading comments on the basis of that. I got a bit of a sense that they had so many responses that they dealt with a lot of them in a rather cursory manner. I noticed a lot of critical stuff about PACE and their recovery claims... go patient peer reviewers!

    edit: After reading more of their responses to comments I feel like we were lucky that the evidence review was not worse.
     
    Last edited: Jun 2, 2015
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  4. Valentijn

    Valentijn The Diabolic Logic

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    They also seemed to have approached the research in a rather cursory manner. Their understanding of it didn't seem to go beyond what someone would get from quickly skimming abstracts.
     
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  5. jimells

    jimells Senior Member

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    That's probably the most to be expected from any modern office today. I heard a report recently that the average person checks their smart phone ONE HUNDRED FIFTY times a day. Wow. That doesn't leave much time to do any actual work.
     
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  6. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    Or possibly the titles, in some cases.

    Someone gave them the cost effectiveness PACE paper, helpfully pointing out the null employment results, and they replied that cost effectiveness was beyond the scope of the review!

    Guess White et al. played their cards right to bury unwanted data.
     
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  7. alex3619

    alex3619 Senior Member

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    I have only just started reading but it looks as if PDW may get the anti PACE commentary weakened.
     
    Last edited: May 31, 2015
  8. Nielk

    Nielk

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    I really got a kick out of reading their reasoning for why they decided to include Oxford criteria based studies even though they agree that Oxgord criteria are inappropriate. :mad:

    They state that they had to include them because as it is, there is a lack of studies included for this report.!!!

    So, they had to include studies that were actually not based on real ME/CFS patients in order to have an adequate amount of research.

    Are they not embarrassed to admit that QUALITY was not an aim of this report?
     
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  9. user9876

    user9876 Senior Member

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    One of his comments is about safety

    The logical implication of his first point is that GET does harm some patients who may be misdiagnosed as having CFS. I seem to remember that mis-diagnosis included depression and sleep disorders but not sure. Haven't there been claims that GET helps with depression although I think there was a study that suggested it made little difference. But given his claim and the implications he should be justifying his claim by showing evidence that those who could have been misdiagnosed could been harmed by GET and that it is more likely than harm to people with ME. His statement just tries to muddy the water without any real critical thinking.

    His second point should also cause concern since the implication is that GET is hard to role out as a service even within specialist centers (given that patients attending specialist centers report deterioration). Of course his claim that trials do not suggest harm should not be taken seriously until he has published all the data defined in the PACE protocol.
     
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  10. Bob

    Bob

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    It's a weak argument because we do know what the patients were diagnosed with; They were diagnosed with ME/CFS, and that's why they are responding to the survey. Whether or not they actually have ME/CFS is an issue for the health services that provided the survey respondents' treatment.

    Reading the comments from MEA's latest public survey, it seems that many patients who deteriorated after GET were simply given an appallingly inappropriate service by therapists who didn't understand their patients or the illness. The comments suggest it has nothing to do with misdiagnosis.
     
    Last edited: May 31, 2015
  11. worldbackwards

    worldbackwards A unique snowflake

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    I'm shocked, shocked...
     
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  12. user9876

    user9876 Senior Member

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    My point was that even if we were to accept that there were significant people misdiagnosed then he needs to demonstrate that those who may have been included with a misdiagnosis were more likely, given the possible diseases that they had, to be harmed by GET than those with a correct ME diagnosis. I think he would find any evidence to support that yet that is the consequence of him dismissing the various patient surveys on a mis-diagnosis argument.

    At the very least his statement is accepting that there is a group of people who get harmed by GET and that there is a good chance that they will be diagnosed with ME and then harmed by GET. Hence if you took this interpretation of his argument it would suggest that GET is a bad treatment as there is a failure to apply good diagnostic process.

    Unfortunately the AHQS response was to accept his point without further analysis. I don't know if comments can be made on comments.

    My belief is that GET is likely to be harmful to many with ME and with little benefit it isn't worth the risk. I noticed (on a quick scan) that Whites main emphasis with the AHQS report was to try to claim GET was safe and to increase his citation count. He did a search for his name on the comments and he didn't seem to want to justify his recovery claims. I wonder if this indicates that he is most concerned to justify his safety claims (because to be seen to have got those wrong would be pretty damning) or if that is all that is left that he feels is defensible.
     
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  13. jimells

    jimells Senior Member

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    The tobacco companies insisted for decades that their products were fun and safe. They also falsified data and hid unfavorable results. They are still paying for their crimes today, at least a little.

    I doubt if PD White has pockets as deep as the tobacco companies. When the time comes the disability insurance mob will dump him and Sir Simon overboard. Perhaps he is starting to fear for his own skin...
     
  14. Sidereal

    Sidereal Senior Member

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    I couldn't agree more with this comment:

     
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  15. Anne

    Anne Senior Member

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    Excellent point!

    So White is admitting that there are patient groups who get harmed by GET and as user9876 says, these groups (according to White) are commonly misdiagnosed as having ME/CFS.

    I wonder which illnesses he is thinking of - since PEM and deterioration following activity/exercise is often thought of as rather exclusive to ME/CFS and with most other illnesses patients are considered to benefit from exercise?
     
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  16. Tom Kindlon

    Tom Kindlon Senior Member

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    Regarding how GET is done, here's an extract from a letter I had published:
     
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  17. Tom Kindlon

    Tom Kindlon Senior Member

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    Also, from:
     
  18. Snowdrop

    Snowdrop Rebel without a biscuit

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    Keep digging that hole PDW. You might just find you have something you want to bury in it.
     
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  19. Tom Kindlon

    Tom Kindlon Senior Member

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    Peter White sometimes tries to claim that GET doesn't cause problems if done under an ME/CFS specialist.
    The data from 2015 ME Association ME/CFS survey report http://bit.ly/1N38qkp says otherwise:
    Courses given by ME-CFS specialists. symptoms after the course compared to how they were before.png
     
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  20. Dolphin

    Dolphin Senior Member

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    Anyone know why White are them are treating Powell et al. (2001) as a GET trial but the FINE Trial (Wearden et al. (2010)) (a different trial from Wearden et al., 1998) when the FINE Trial was just a big version of Powell et al. 2001?
    My suspicion is because Wearden et al. (2010) did not give a good result.
     
    Last edited: Sep 1, 2015

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