Invisible Illness Awareness Week 2016: Our Voices Need to Be Heard
Never heard of Invisible Illness Awareness Week? You're not alone. Jody Smith sheds a little light to make it more visible
Discuss the article on the Forums.

Paper on final P2P Report

Discussion in 'General ME/CFS News' started by Dolphin, Jun 15, 2015.

  1. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,178
    Free full text at: http://annals.org/article.aspx?articleid=2322804#Abstract

     
    Last edited: Jun 15, 2015
    Sushi, Asa, beaker and 3 others like this.
  2. halcyon

    halcyon Senior Member

    Messages:
    2,293
    Likes:
    5,365
    Is it just me or was the draft report slightly better compared to this?
     
    Keela Too and worldbackwards like this.
  3. Sean

    Sean Senior Member

    Messages:
    3,257
    Likes:
    17,985
    Looks good to me. Very good even, including some hard truths for the medical profession to face about where the problems with patient-doctor interaction lie.

    Of particular importance is this from the first paragraph in the Conclusion section


    There is a phrase at the start of the Future Direction and Recommendations section that could be misinterpreted and may need clarification at the PR level;

    "The subjective nature of ME/CFS,..."

    I think they simply mean we have no established biomarkers yet and must rely heavily on patient self-report, which is true.


    A sentence in the Provide Training and Education section says;

    "Patients must also actively participate in their overall treatment."

    but further down in the same section they also say

    "Patients should be active participants in care and decision making."


    They do say CBT may be a useful secondary palliative component in a broader therapeutic or management package. But also make it clear that its benefits are modest, the methodologies used to derive/measure outcomes are problematic, and ME/CFS is definitely not a primary psychological disorder.


    Given the overall content and tone of the article and its particular statements on various critical matters, I don't think there is anything for us to be concerned with. Quite the contrary, it is a good distillation of, and backs up, just about everything we have been saying for years.

    If it is any indication of the Final P2P Report, then :thumbsup: .
     
    catly, Simon, Asa and 4 others like this.
  4. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,522
    I was hoping for some active criticism of how CBT/GET have been promoted, rather than just a somewhat tepid response to them. For people not following things closely this is not going to seem like much of a break from the past, and we do need a really dramatic shift rather than just gradual improvements. As it is I fear that this entrenches some of the problems we've seen and might make dramatic change more difficult.

    If this is where we were twenty years ago (and we could have been if those in positions of power had just been more reasonable and honest) then patients would have had a much better time of it, and this report isn't totally unreasonable like some CFS documents, but it's going to leave a lot of doctors thinking 'carry on as before' imo.
     
  5. SOC

    SOC

    Messages:
    7,802
    Likes:
    16,462
    I think the reason for this may be that this is a US-based report rather than a UK-based one. While (bad) CBT/GET gets some play in the US, it is not nearly as pervasive as it is in the UK. It is nowhere near as heavily promoted by US government agencies as it is by UK ones. So it's probable that this US-based committee didn't see the need for strong criticism of how they have been promoted.

    What we need is a similar initiative in the UK to come down hard on the way CBT/GET is promoted, more like heavily pushed, in the UK.
     
    Bob, Valentijn and Esther12 like this.
  6. halcyon

    halcyon Senior Member

    Messages:
    2,293
    Likes:
    5,365
    Same. What's worse is that it's almost a tepid promotion of CBT/GET that could be used by BPS proponents as official US support of CBT/GET.
     
    Nielk, Keela Too, Valentijn and 2 others like this.
  7. alex3619

    alex3619 Senior Member

    Messages:
    12,482
    Likes:
    35,015
    Logan, Queensland, Australia
    This is a paper on the report or workshop. Is the report itself out yet? (not the draft)
     
  8. halcyon

    halcyon Senior Member

    Messages:
    2,293
    Likes:
    5,365
    This is the final report as far as I can tell. From the NIH site:
    The text is very similar to the draft report as far as I can see.
     
    Nielk and Liz Willow like this.
  9. alex3619

    alex3619 Senior Member

    Messages:
    12,482
    Likes:
    35,015
    Logan, Queensland, Australia
    Thanks @halcyon, I guess I am incredulous that this tiny paper is a report. Big talk, big effort, big money, tiny report.
     
  10. halcyon

    halcyon Senior Member

    Messages:
    2,293
    Likes:
    5,365
    I felt the same way reading it. I guess with the way the AHRQ report laid waste to the ME literature, there wasn't much left to say.
     
  11. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,812
    A few excerpts (any emphasis is mine):

    They seem to take a subtle swing at BPS research here:

    They don't seem thrilled about GET, even if they aren't actively attacking it:

    They seem to be taking it for granted that it is a biological disease:

    And again a criticism of the inappropriate focus of (subjective BPS?) outcome measurements:

    This whole paragraph was quite good, and completely omits any mention of BPS research:

    This sounds a bit critical of HHS for failing to get much done thus far, with what they already know:

    I think they have a good focus for moving forward, both for research and for the education of doctors:
    There are a lot of good and detailed suggestions for how to do that in the publication as well.


    I'm a little wary of the "multi-disciplinary" treatment approach, due to the way it's so badly abused in the UK and the Netherlands. But it's a good sign that physical therapists aren't mentioned:

    I think they're missing the point quite a bit by claiming that CBT has even modest benefits, but at least they aren't sounding enthused about it, and are putting it in a supporting role instead of as a primary treatment:

    As someone else mentioned, this bit in the conclusion is pretty good, and is a big middle finger for Oxford and the BPS practitioners who adore it:

    Overall, I see little to fault. The tone is generally quite mild, especially compared to some of the heat emanating from the IOM report, but it is putting the right message across. It might be more appealing to politicians, bureaucrats, and doctors due to the moderate tone, whereas the more intense IOM language works better with the media and public advocacy efforts. And that mild tone throughout allows the few blunter and more overt statements to really shine, such as the criticism of Oxford and the criticism of useless outcome measurements.

    Regardless of what the report ends up looking like, this publication is a pretty useful addition to the literature.
     
    Dolphin, SOC, Esther12 and 5 others like this.
  12. Sidereal

    Sidereal Senior Member

    Messages:
    3,095
    Likes:
    17,172
    Boring waffle.
     
  13. beaker

    beaker ME/cfs 1986

    Messages:
    773
    Likes:
    1,839
    USA
    surprised at how short it is. Focus different then IOM though.
    It seems kinda ho hum. Not negative, but not wonderfully helpful.
    STill, let's hope these 2 together help to get us some $$$$$$$$$$
     
    catly, Bob and Valentijn like this.
  14. Sasha

    Sasha Fine, thank you

    Messages:
    12,778
    Likes:
    34,181
    UK
    But this is the report? I'm a bit confused.
     
    aimossy likes this.
  15. Valentijn

    Valentijn Senior Member

    Messages:
    14,281
    Likes:
    45,812
    No, it's a publication. Several papers have been published yesterday which seem to contribute to the report. The report itself comes out later today I think?
     
    alex3619 and Sasha like this.
  16. Bob

    Bob

    Messages:
    9,844
    Likes:
    33,946
    England (south coast)
    On first reading, I thought it was a mixed bag with some good recommendations (e.g. recommendations re biomedical investigations), some mediocre (and obvious) recommendations, and some dodgy stuff too (e.g. a recommendation to use depression scales and to use research funding to further investigate CBT etc.) Overall, I was disappointed on first reading, but perhaps I need to read it again (with much lower expectations), trying to interpret it from the point of view of a government official who is trying to justify a major step-change in investment and focus on ME/CFS. Ultimately, it all depends on how the report is used and interpreted and what strategies it is used to justify. If it's taken seriously by the authorities, and interpreted with good intent, and used as a springboard to a new vigorous approach to ME along with new funding streams then perhaps it will all have been worthwhile. (As long as they ignore the recommendations re investing in CBT.) Overall, my first impression was that it's a mediocre and disappointing report. I'll read it again.
     
    Last edited: Jun 16, 2015
  17. Bob

    Bob

    Messages:
    9,844
    Likes:
    33,946
    England (south coast)
    I'd like to have seen the word 'only' added to that recommendation.

    I know that they say that the benefits of CBT are modest, with the evidence coming mainly from low quality studies, but I think they fail to focus on the fact that all the studies fail to meet the standard of double blind trials.

    Also, I wish they'd said that the modest benefit from CBT was seen only in subjective measures in open label trials, and does not translate to improved function when objectively measured.

    Edit: I can't remember if they have explicitly stated any of the above. If they have said any of this, then I wish they'd forced the point repeatedly or, better still exclude the evidence!
     
    Last edited: Jun 16, 2015
    Dolphin, Kati, mango and 3 others like this.
  18. Sasha

    Sasha Fine, thank you

    Messages:
    12,778
    Likes:
    34,181
    UK
    Just skimmed this. A bit disappointed that they left in a lot of what I shall refer to technically as 'weird shit' such as the recommendation for homeopathy research and the face-value take on CBT and the incorrect figures on economic burden and other stuff that a lot of us wrote in about.

    Some good stuff, some not so good. It still all looks very much like a committee paper that's trying to please all of its members rather than as something with an entirely consistent view.

    But the good thing is that, like the IOM report, it makes it clear that this is not a psychological disorder and that we've been treated like shit.

    Not long now until the phone event - 4pm UK time.
     
    Dolphin, Kati, Esther12 and 6 others like this.
  19. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,611
    I agree with this statement. It is inconsistent and is seemingly trying to please everyone. It does not throw out the PACE results and puts too much emphasis on patient self-help. It is all a matter of how one interprets this report/article.
    See this link http://www.eurekalert.org/pub_releases/2015-06/acop-pst060915.php
    Scroll down to #2
    The featured headings are: "No diagnostic methods proven effective for diagnosing ME/CFS" & "Counseling therapies and graded exercise may improve fatigue and function in some patients."
    This is what many will hear/understand from this. By not negating/throwing out PACE results or at least point out the dangers and harms, they have left the door totally open of perpetual promotion of CBT/GET.

    I do not understand how patients can approve/accept this.
     
    Wildcat, Esther12, GalaxiiGrl and 3 others like this.
  20. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,611

See more popular forum discussions.

Share This Page