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Paper on final P2P Report

Dolphin

Senior Member
Messages
17,567
Free full text at: http://annals.org/article.aspx?articleid=2322804#Abstract

Position Papers | 16 June 2015
National Institutes of Health Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Carmen R. Green, MD; Penney Cowan; Ronit Elk, PhD; Kathleen M. O'Neil, MD; and Angela L. Rasmussen, PhD

Ann Intern Med. 2015;162(12):860-865. doi:10.7326/M15-0338

The National Institutes of Health (NIH) Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome was cosponsored by the NIH Office of Disease Prevention and the Trans-NIH Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Research Working Group.

A multidisciplinary working group developed the agenda, and an Evidence-based Practice Center prepared an evidence report through a contract with the Agency for Healthcare Research and Quality to facilitate the discussion.

During the 1.5-day workshop, invited experts discussed the body of evidence and attendees had the opportunity to comment during open discussions.

After weighing evidence from the evidence report, expert presentations, and public comments, an unbiased, independent panel prepared a draft report that identified research gaps and future research priorities.

The report was posted on the NIH Office of Disease Prevention Web site for 4 weeks for public comment.
 
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Sean

Senior Member
Messages
7,378
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

Furthermore, the multiple case definitions for ME/CFS have hindered progress. In particular, continuing to use the Oxford definition may impair progress and cause harm. Therefore, for progress to occur, we recommend that this definition be retired; the ME/CFS community concur on a single case definition (even if it is not perfect); and patients, clinicians, and researchers agree on a definition for meaningful recovery.


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: .
 
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13,774
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.
 

SOC

Senior Member
Messages
7,849
I was hoping for some active criticism of how CBT/GET have been promoted, rather than just a somewhat tepid response to them.
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.
 

halcyon

Senior Member
Messages
2,482
This is a paper on the report or workshop. Is the report itself out yet? (not the draft)
This is the final report as far as I can tell. From the NIH site:
The panel's final report will appear in print in the Annals of Internal Medicine and will be posted online on the ODP website on Tuesday, June 16, 2015.

The text is very similar to the draft report as far as I can see.
 

halcyon

Senior Member
Messages
2,482
Thanks @halcyon, I guess I am incredulous that this tiny paper is a report. Big talk, big effort, big money, tiny report.
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.
 
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15,786
A few excerpts (any emphasis is mine):
Although psychological repercussions (such as depression) may accompany ME/CFS, it is not a primary psychological disease.


They seem to take a subtle swing at BPS research here:
Small clinical trials of ME/CFS, most with methodological limitations and all constrained by the lack of a gold standard for diagnosis, have led to confusion. Most studies have significant methodological limitations and take place primarily in specialty clinics in relatively homogeneous populations. These trials often use subjective, unclear, and poorly defined end points (which may not be meaningful to patients) and do not provide information explaining the high withdrawal rates.


They don't seem thrilled about GET, even if they aren't actively attacking it:
The focus on exercise programs has discouraged patient participation in any type of physical activity (such as mild stretching) due to concerns of precipitating increased symptoms.


They seem to be taking it for granted that it is a biological disease:
There is little understanding of the inciting event or the cellular and molecular mechanisms that underlie ME/CFS, preventing quantitative assessments of disease severity or prognosis.


And again a criticism of the inappropriate focus of (subjective BPS?) outcome measurements:
The symptoms that patients consider clinically meaningful are not in the scientific literature; this discordance must be rectified.


This whole paragraph was quite good, and completely omits any mention of BPS research:
Current research has neglected many of the biological factors underlying disease onset and progression. Research priorities should shift to include basic science and mechanistic work that will contribute to development of tools and measures, such as biomarker or therapeutics discovery. The following questions need to be answered: What is the pathogenesis of ME/CFS? What are the roles of virologic mechanisms, especially herpesviruses? Does mononucleosis lead to ME/CFS in adolescents? What are the roles of other pathogenic agents? Is this a genetic disease? Is there a gene–environment interaction? Is it a spectrum disease? Are different pathways responsible for different symptoms?


This sounds a bit critical of HHS for failing to get much done thus far, with what they already know:
Overall, we have not implemented what we already know for patients with ME/CFS while the disease steals their health and well-being.


I think they have a good focus for moving forward, both for research and for the education of doctors:
Innovative biomedical research is urgently needed to identify risk and therapeutic targets. The scientific community and funding agencies are responsible for conducting trials in an ethical way that is meaningful for patients.
. . .
The dissemination of diagnostic and therapeutic recommendations should begin by focusing on primary care providers and expand to other areas, such as neurology, rheumatology, and infectious disease.
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:
Many clinicians do not fully understand ME/CFS. We believe that it is a distinct disease that requires a multidisciplinary care team (such as physicians, nurses, case managers, social workers, and psychologists). Primary care clinicians will be instrumental in ensuring that patients are treated appropriately and care is optimized.


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:
The modest benefit from cognitive behavioral therapy should be studied as an adjunct to other methods.


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:
Furthermore, the multiple case definitions for ME/CFS have hindered progress. In particular, continuing to use the Oxford definition may impair progress and cause harm. Therefore, for progress to occur, we recommend that this definition be retired; the ME/CFS community concur on a single case definition (even if it is not perfect); and patients, clinicians, and researchers agree on a definition for meaningful recovery.


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.
 

Bob

Senior Member
Messages
16,455
Location
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.
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
The modest benefit from cognitive behavioral therapy should [only] be studied as an adjunct to other methods.
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!
 
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Sasha

Fine, thank you
Messages
17,863
Location
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.
 

Nielk

Senior Member
Messages
6,970
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.

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.