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The P2P Draft report is out

Discussion in 'Action Alerts and Advocacy' started by CBS, Dec 18, 2014.

  1. CBS

    CBS Senior Member

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    https://prevention.nih.gov/docs/programs/mecfs/ODP-MECFS-DraftReport.pdf

    First read through, generally much better than expected.

    Last lines 402-403:

    "We hope our work has dignified ME/CFS and those affected while providing expert guidance to the NIH and the broader research community."

    I hope so too!

    How HHS responds (especially $ support) to this document will determine if it was a good faith effort to better understand/treat ME or just an attempt at managing a political problem. Again, first impressions are better than expected.
     
    Last edited: Dec 18, 2014
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  2. snowathlete

    snowathlete

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    Read the first 73 lines so far and on balance it is positive and progressive. Not what I expected. Much more to read though...
     
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  3. Nielk

    Nielk

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  4. Ember

    Ember Senior Member

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    On case definitions:
     
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  5. snowathlete

    snowathlete

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    Most the way through and although not flawless, this is much much more than many of would have hoped for. It could make a huge difference (from what I have read so far...who knows what will come next though). Here is one quote from line 235:
    "Research is needed investigating the effect of the intestinal microbiome on ME/CFS using cutting - edge technologies such as high - throughput sequencing.

    If only we had a world renowned expert who wanted to do such a study? Cant though can we, else it'd already be fully funded and progressing, right? Right? :eek:
     
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  6. halcyon

    halcyon Senior Member

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    I agree, it is far better than I expected. Good emphasis on the need for a standard case definition, multiple mentions of ditching the Oxford criteria, reiteration that ME/CFS is real and not a mental illness. Unfortunately they still couldn't get away from CBT/GET and go so far as to say they provide "measurable improvement."

    What's disappointing to me is that, while this illness is still largely a mystery, it's not quite as mysterious as they make it out to be in the report. I partially blame the AHRQ report for this. There is so much interesting research that was excluded, or worse, not reviewed at all.
     
  7. Ecoclimber

    Ecoclimber Senior Member

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    I agree that it is far better than I expected and agree that this disease is not quite as mysterious as indicated.

    However I was pleasantly surprised by some of the statements and acknowledgement within this draft which so clearly addresses the stigma associated with this illness at the hands of the medical and research community. It's a reversal in the paradigm thinking of the past.

    Yes, finally an admission of the dereliction of duty on the part of the medical and research community !!
    :)

    Yes!
    I was surprise by this recognition, possible biomarkers!
    Yes, finally an admission of agreement to what the ME/CFS patient community has been stating over the last three decades!! :)
    It's a start to build on and hopefully it will have an impact on the IOM report. It's far better than the conclusions stated in the VA IOM report. I am disappointed that they failed to acknowledge the information in the letter from our ME/CFS researchers and patient advocates concerning the CCC & ICCC criteria.

    As it currently stands now, these are just words on piece of paper. The big question going forward is the question concerning the NIH. As mentioned by @CBS, Does the NIH have the political will to translate the information as outlined in this report into actionable $$ fundable programs? It remains to be seen as to the good faith effort by the NIH to actually finally fund projects that impact ME/CFS research. This will be the standard that the ME/CFS patient community will apply toward the HHS, NIH, CDC going forward.


     
    Last edited: Dec 18, 2014
  8. GalaxiiGrl

    GalaxiiGrl

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    "Even if it is not perfect"??? How condescending. Considering how abysmally the NIH has treated patients over the last 30 years, they absolutely owe us nothing less than perfection.

    Of course, this is their way of saying that the Fukuda definition, while not "perfect" in that it doesn't require the characteristic PEM that distinguishes this illness from "Chronic Fatigue", will do just fine.
     
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  9. catly

    catly Senior Member

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    I completed a first read through--it reads much easier than the AHRQ report and it's only 19 pages instead of hundreds of pages.

    I agree with most of the comments above, overall not that bad, actually had to wipe the tears from my eyes on some of the points.

    Of course it's not perfect--I will definately have some comments to make--and as they say, the proof is in the pudding--we still have a very long way to go but maybe, just maybe, this might/could be the new beginning we've been hoping for?
     
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  10. snowathlete

    snowathlete

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    I agree and I feel the same disapointment that the imprortance and effectiveness of these treatments, particularly CBT (as GET does have some negative things said about it as well) are still overstated. But there are also progressive statements like these:
    "There is reproducible evidence of neurocognitive dysfunction with abnormalities in functional magnetic resonance imaging (fMRI) and positron emission tomography (PET) studies. Strong evidence indicates immunologic and inflammatory pathologies, neurotransmitter signaling disruption, microbiome perturbation, and metabolic or mitochondrial abnormalities in ME/CFS, potentially important for defining and treating ME/CFS."
     
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  11. snowathlete

    snowathlete

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    That's not the message I get from reading this document. I think that's what many were expecting but that's not what we have here I don't think. The overal language and the points made with emphasis, suggest they think the definition needs to include neuro-cognitive dificulties, PEM and pain (they specifically state these as well as fatigue) as coming up again and again, which would suggest they are angling for a more specific definition than Fukuda.

    edit: dont want to put words into their mouths. Here is the bit I'm referring to (it's a pain to copy paste from btw):
    "A clear case definition with validated diagnostic tools is required before studies can be conducted. We noted a consistent constellation of symptoms: fatigue, post-exertional malaise, neurocognitive deficit, and pain."
     
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  12. GalaxiiGrl

    GalaxiiGrl

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    The problem here is that they didn't specifically say that PEM needs to be a required symptom in the case definition. As we've seen in the past, NIH has no problem with ignoring any "suggestions" that are made, even those by their own CFSAC committee. Subtly is definitely lost on them.

    I just think that the fact that they gave any credence, however small, to CBT and GET is a compromise that we, the patients, should not have to make. I thought it was made quite clear during the P2P presentations that the studies that insisted CBT and GBT were effective, or even appropriate, as treatments had used the Oxford criteria. It's just common sense that since they are suggesting retirement of the Oxford criteria, the results of the studies that used it should not be included in this report. (Of course, the AHRQ representative at the P2P meeting tried to argue against this logic with evasive language and circular reasoning).
     
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  13. *GG*

    *GG* Senior Member

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    Show me the money! And action will speak louder than words!

    GG
     
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  14. Bob

    Bob

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    Just posting my initial reaction...
    I'm very impressed! It has a major emphasis on recommending proper biomedical research.
    On initial reading, there are only about four or five lines that I didn't like.
    I've posted my dislikes, and a selection of my likes below. I've highlighted my key words in blue...

    Dislikes:

    282 Studies addressing
    283 biopsychosocial parameters (including the mind-body connection), function,
    284 and QOL should be encouraged.​

    362 The modest benefit from CBT should be studied as adjunct to
    363 other modalities of treatment such as self-management.​

    I think that saying there is an overlap with depression is misleading, and unhelpful:

    32 Despite the absence of a clear definition, an estimated million people have
    33 ME/CFS, and it overlaps with many other diseases (e.g., fibromyalgia, major depressive
    34 disorder, chronic pain).​

    93 A multitude of symptoms are associated with ME/CFS, with
    94 substantial overlap with other pathologic diseases (e.g., fibromyalgia, major depressive disorder,
    95 and a variety of chronic pain or inflammatory conditions).​

    I'm not familiar with the depression scale recommended below, but studies using depression scales are often misleading:

    293 Use of already well-validated measures developed by the NIH such as the
    294 Patient-Reported Outcomes Measurement Information System (PROMIS) and
    295 the Center for Epidemiological Studies Depression scale (CESD) should be
    296 encouraged.​


    Likes:

    I like loads of it, but these are some items that particularly stuck out...

    92 Although psychological repercussions (e.g., depression) often follow ME/CFS, this is not a
    93 psychological disease in etiology.

    296 Although ME/CFS is not a psychiatric disease, exploring
    297 psychiatric comorbidities such as depression, anxiety, and fear is critical to
    298 improve quality of life.​

    38 The Oxford criteria (published in the Journal of the Royal
    39 Society of Medicine in February 1991) are flawed and include people with other conditions,
    40 confounding the ability to interpret the science.

    378 Specifically, continuing to use the Oxford definition may impair progress and cause
    379 harm. Thus, for needed progress to occur we recommend (1) that the Oxford definition be
    380 retired, (2) that the ME/CFS community agree on a single case definition (even if it is not
    381 perfect), and (3) that patients, clinicians, and researchers agree on a definition for meaningful
    382 recovery.​

    313 We believe ME/CFS is a
    314 distinct disease that requires a multidisciplinary care team (e.g., physicians, nurses,
    315 case managers, social workers, psychologists) to optimize care.​

    113 Existing treatment studies (cognitive behavioral therapy [CBT] and graded exercise therapy
    114 [GET]) demonstrate measurable improvement, but this has not translated to improvements in
    115 quality of life (QOL). Thus, they are not a primary treatment strategy and should be used as a
    116 component of multimodal therapy.

    82 There is reproducible evidence of neurocognitive dysfunction with abnormalities in functional
    83 magnetic resonance imaging (fMRI) and positron emission tomography (PET) studies. Strong

    84 evidence indicates immunologic and inflammatory pathologies, neurotransmitter signaling
    85 disruption, microbiome perturbation, and metabolic or mitochondrial abnormalities in ME/CFS,
    86 potentially important for defining and treating ME/CFS.​
     
    Last edited: Dec 18, 2014
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  15. Sidereal

    Sidereal Senior Member

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    This is actually pretty good, I'm shocked. Though if the Oxford criteria are so bad, why not toss out studies from the review that used them? Oh that's right, because then there would be no evidence for CBT/GET.
     
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  16. Bob

    Bob

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    I've added this to my 'likes' (I see a number of people, above, have picked up on this section):

    82 There is reproducible evidence of neurocognitive dysfunction with abnormalities in functional
    83 magnetic resonance imaging (fMRI) and positron emission tomography (PET) studies. Strong

    84 evidence indicates immunologic and inflammatory pathologies, neurotransmitter signaling
    85 disruption, microbiome perturbation, and metabolic or mitochondrial abnormalities in ME/CFS,
    86 potentially important for defining and treating ME/CFS.​
     
    Last edited: Dec 18, 2014
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  17. Valentijn

    Valentijn WE ARE KINA

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    People can send their feedback in regarding this draft, according to https://prevention.nih.gov/programs...s/me-cfs/workshop-resources#archivedvideocast :
    I think we should all be sending in our thoughts, in our own words, even if it's a very brief comment. And it's probably a good idea to say "thanks" for the good parts, while objecting to the bad parts :D
     
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  18. Bob

    Bob

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    I agree.

    And there's plenty of text about the range of symptoms experienced, including this:

    58 Fatigue has been the defining focus of recent research, but many other symptoms need to be
    59 explored, primarily neurocognitive deficit (“brain fog”), post-exertion malaise, and pain.​
     
    Last edited: Dec 18, 2014
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  19. snowathlete

    snowathlete

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    I agree that the NIH has a history of ignoring suggestions from other comittees. This could happen again here. I hope not. But this report isn't using subtlety in suggesting that these other symptoms should be included; they are being pretty clear and direct really.

    I know it is galling to have GET and CBT in the report getting some credence. I feel that too, and I agree we shouldn't have to put up with it, but it isn't the whitewash that many predicted. I think we need to be pragmatic and realise that progress whenever it comes, is going to be incremental. GET and CBT will die a very slow death. But we should celebrate it's wounds. The chances of this report damning these treatments entirely had to be very close to nil. The chances of them saying the negative things they have about GET had to have been pretty slim, yet they have said some negative things about it. They say that Oxford should be dropped and they say one definition should come out at the end of this, leaving little room for those practicing non-science to come up with their own Oxford-mark2 definition. I think these are pretty big victories, so long as NIH act on them correctly. We need to pressure them to do so.

    I agree that we have a strong case for any studies used as evidence that relied on Oxford definition to be dropped or their weight further lessened in this report. We should make that case when providing feedback on this. There are signs that they have listened to input from patients up to this point, so it probably wont be a wasted effort. Bob does a good job of highlighting other points that we should raise. I also agree with Val that we should also praise the panel for the good things in the report.
     
    Last edited: Dec 18, 2014
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  20. jimells

    jimells Senior Member

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