Anonymous
Not logged in
Talk
Contributions
Create account
Log in
Search
Editing
Pathways to prevention report
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
Namespaces
Page
Discussion
More
More
Page actions
Read
Edit
Edit source
History
Warning:
You are not logged in. Your IP address will be publicly visible if you make any edits. If you
log in
or
create an account
, your edits will be attributed to your username, along with other benefits.
Anti-spam check. Do
not
fill this in!
[http://annals.org/aim/article/2322804/national-institutes-health-pathways-prevention-workshop-advancing-research-myalgic-encephalomyelitis '''''National Institutes of Health Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome''''' Position Paper] (Green CR, Cowan P, Elk R, O'Neil KM, Rasmussen AL). The report's title is often shortened to the "P2P report." The [[IACFSME]] organization wrote a [http://iacfsme.org/portals/0/pdf/IACFSME_NIH_P2P_January_statement_FF3.pdf response] to the report: "Generally we agree with the majority of the Panelβs recommendations but believe that the elephant in the room β research funding β alluded to in the [http://www.ncbi.nlm.nih.gov/pubmed/26075757 report] (e.g. Line 8) needs to be addressed more strongly and specifically."<ref>[http://iacfsme.org/portals/0/pdf/IACFSME_NIH_P2P_January_statement_FF3.pdf IACFS/ME Response to P2P Draft Report on ME/CFS (PDF)]</ref> The [[Chronic Fatigue Syndrome Advisory Committee]] of the [[U.S. Department of Health and Human Services]] assisted in the final draft of the report. The committee's recommendations for amending the draft report of the ''Pathways to Prevention: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome'' can be found [https://www.hhs.gov/sites/default/files/advcomcfs/recommendations/cfsac-pathways-to-prevention-january-2015-updated.pdf here.]<ref>{{Cite web|url=https://www.hhs.gov/sites/default/files/advcomcfs/recommendations/cfsac-pathways-to-prevention-january-2015-updated.pdf| title = Comments from the HHS Chronic Fatigue Syndrome Advisory Committee | last = HHS Chronic Fatigue Syndrome Advisory Committee | first = | authorlink = | date = 2015 | website = |archive-url=|archive-date=|url-status=|access-date=}}</ref> == Pathways to Prevention workshop position papers == <nowiki>*</nowiki>2015, Diagnostic Methods for [[ME/CFS|Myalgic Encephalomyelitis/Chronic Fatigue Syndrome]]: A Systematic Review for a [[National Institutes of Health]] Pathways to Prevention Workshop<ref name=":0">{{Cite journal | last = Haney | first = Elizabeth | last2 = Smith | first2 = M.E. Beth | last3 = McDonagh | first3 = Marian | last4 = Pappas | first4 = Miranda | last5 = Daeges | first5 = Monica | last6 = Wasson | first6 = Ngoc | last7 = Nelson | first7 = Heidi D. | date = Jun 16, 2015 | title = Diagnostic Methods for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review for a National Institutes of Health Pathways to Prevention Workshop | url =http://annals.org/article.aspx?doi=10.7326/M15-0443|journal=Annals of Internal Medicine|language=en|volume=162|issue=12 | pages = 834|doi=10.7326/m15-0443|issn=0003-4819|via=}}</ref> [http://annals.org/aim/fullarticle/2322800/diagnostic-methods-myalgic-encephalomyelitis-chronic-fatigue-syndrome-systematic-review-national (Full Text)] <nowiki>*</nowiki>2015, National Institutes of Health Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome<ref name=":2">{{Cite journal | last = Green | first = Carmen R. | last2 = Cowan | first2 = Penney | last3 = Elk | first3 = Ronit | last4 = O'Neil | first4 = Kathleen M. | last5 = Rasmussen | first5 = Angela L.| date = Jun 16, 2015 | title = National Institutes of Health Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome|url=http://annals.org/article.aspx?doi=10.7326/M15-0338|journal=Annals of Internal Medicine|language=en|volume=162|issue=12 | pages = 860|doi=10.7326/m15-0338|issn=0003-4819|via=}}</ref> [http://annals.org/aim/fullarticle/2322804/national-institutes-health-pathways-prevention-workshop-advancing-research-myalgic-encephalomyelitis (Full Text)] <nowiki>*</nowiki>2015, Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review for a National Institutes of Health Pathways to Prevention Workshop<ref name=":1">{{Cite journal | last = Smith | first = M.E. Beth | last2 = Haney | first2 = Elizabeth | last3 = McDonagh | first3 = Marian | last4 = Pappas | first4 = Miranda | last5 = Daeges | first5 = Monica | last6 = Wasson | first6 = Ngoc | last7 = Fu | first7 = Rongwei | last8 = Nelson | first8 = Heidi D. | date = Jun 16, 2015 | title = Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review for a National Institutes of Health Pathways to Prevention Workshop | url =http://annals.org/article.aspx?doi=10.7326/M15-0114|journal=Annals of Internal Medicine|language=en|volume=162|issue=12 | pages = 841|doi=10.7326/m15-0114|issn=0003-4819|via=}}</ref> [http://annals.org/aim/fullarticle/2322801/treatment-myalgic-encephalomyelitis-chronic-fatigue-syndrome-systematic-review-national-institutes (Full Text)] <nowiki >*</nowiki > 2016, July 2016 Addendum<ref name=Addendum2016>{{citation | vauthors = Smith ME, Nelson HD, Haney E, Pappas M, Daeges M, Wasson N, McDonagh M | work = Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome No. 219| title =July 2016 Addendum | pages = 1β433 | date = Dec 2014 | pmid = 30313001 | doi = 10.23970/AHRQEPCERTA219 | url = https://www.ncbi.nlm.nih.gov/books/NBK379582/ | publisher = Agency for Healthcare Research and Quality (US) | quote = The results are consistent across trials with improvement in function, fatigue, and global improvement and provided moderate strength of evidence for improved function (4 trials, n=607) and global improvement (3 trials, n=539), low strength of evidence for reduced fatigue (4 trials, n=607) and decreased work impairment (1 trial, n=480), and insufficient evidence for improved quality of life (no trials) | doi-access = free }}</ref> :The addendum to this report recommended that the Oxford criteria not be used when studying ME/CFS and downgraded the previous evidence for CBT and GET to "low quality" evidence. If studies based on the Oxford criteria were excluded, there would be insufficient evidence of the effectiveness of GET on any outcome. {{Quote| title = Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome No. 219 July 2016 Addendum|text=Existing treatment studies examining counseling and behavior therapies or graded exercise therapy demonstrate measurable improvements but may not yield improvements in quality of life (QoL). Therefore, these interventions are not a primary treatment strategy and should be used only as a component of multimodal therapy... <br />Blatantly missing from this body of literature are trials evaluating effectiveness of interventions in the treatment of individuals meeting case definitions for ME or ME/CFS. | author = Smith et al. Agency for Healthcare Research and Quality (US)}} ==Panel members == *[[Carmen Green]], Chairperson *[[Penney Cowan]] *[[Ronit Elk]] *[[Kathleen O'Neil]] *[[Angela Rasmussen]] ==Working group members== *[[Susan Maier]], Chairperson *Jody Engel *[[Carmen Green]] *[[Mady Hornig]] *Suchitra Iyer *[[Leonard Jason]] *M. Katherine Jung *[[Nancy Klimas]] *Deborah Langer *Janet Maynard *[[Marian McDonagh]] *[[Robert Miller]] (patient and advocate, Reno, Nevada) *Elizabeth Neilson *EunChung Park *Wilma Peterman Cross *[[Peter Rowe]] *Leorey Saligan *Mariela Shirley *[[M.E. Beth Smith]] *Paris Watson *Jessica Wu ==Notable findings == ===Patients are treated poorly=== "Both society and the medical profession have contributed to the disrespect and rejection experienced by patients with ME/CFS. They are often treated with [[Stigma and discrimination|skepticism]], uncertainty, and apprehension and labeled as [[deconditioning|deconditioned]] or having a primary psychological disorder. Patients often make extraordinary efforts at extreme personal and physical costs to find a physician who will correctly diagnose and treat their symptoms; some are [[Ethical issues |treated inappropriately]], causing [[medical neglect and abuse |additional harm]]."<ref name=":2" /> ===ME/CFS is not a psychological disease=== *"Although psychological repercussions (such as depression) may accompany ME/CFS, it is not a primary psychological disease."<ref name=":2" /> ===Criticism of the Oxford criteria === *"The [[Oxford criteria |Oxford CFS case definition]] is the least restrictive, and its use as entry criteria could have resulted in selection of participants with other fatiguing illnesses or illnesses that resolve spontaneously with time (16, 71)."<ref name=":1" /> *"Consensus groups and researchers should consider retiring the Oxford case definition because it differs from the other case definitions and is the least restrictive, probably including individuals with other overlapping conditions"<ref name=":0" /> ===Diagnostic uncertainty === *"In conclusion, 9 sets of clinical criteria are used to define ME/CFS, yet none of the current diagnostic methods have been adequately tested to identify patients with ME/CFS when diagnostic uncertainty exists. More definitive studies in broader populations are needed to address these research gaps."<ref name=":1" /> ==Learn more== *[http://annals.org/aim/article/2322804/national-institutes-health-pathways-prevention-workshop-advancing-research-myalgic-encephalomyelitis Full text of position paper] *[http://iacfsme.org/portals/0/pdf/IACFSME_NIH_P2P_January_statement_FF3.pdf IACFS/ME Response to P2P Draft Report on ME/CFS] The [[IACFSME]] response to P2P report (PDF) ==See also== *[[Institute of Medicine report]] ==References== {{Reflist}} [[Category:Reports]] [[Category:Secondary sources]][[Category:Seminal works]]
Summary:
Please make sure your edits are consistent with
MEpedia's guidelines
.
By saving changes, you agree to the
Terms of use
, and you irrevocably agree to release your contribution under the
CC BY-SA 3.0 License
and the
GFDL
. You agree that a hyperlink or URL is sufficient attribution under the Creative Commons license.
Cancel
Editing help
(opens in new window)
Templates used on this page:
Template:Citation
(
edit
)
Template:Cite journal
(
edit
)
Template:Cite web
(
edit
)
Template:Comma separated entries
(
edit
)
Template:If empty
(
edit
)
Template:Main other
(
edit
)
Template:Quote
(
edit
)
Template:Reflist
(
edit
)
Module:Arguments
(
edit
)
Module:Check for unknown parameters
(
edit
)
Module:Citation/CS1
(
edit
)
Module:Citation/CS1/COinS
(
edit
)
Module:Citation/CS1/Configuration
(
edit
)
Module:Citation/CS1/Date validation
(
edit
)
Module:Citation/CS1/Identifiers
(
edit
)
Module:Citation/CS1/Utilities
(
edit
)
Module:Citation/CS1/Whitelist
(
edit
)
Module:If empty
(
edit
)
Module:No globals
(
edit
)
Module:Separated entries
(
edit
)
Module:TableTools
(
edit
)
Navigation
Navigation
Skip to content
Main page
Browse
Become an editor
Random page
Popular pages
Abbreviations
Glossary
About MEpedia
Links for editors
Contents
Guidelines
Recent changes
Pages in need
Search
Help
Wiki tools
Wiki tools
Special pages
Page tools
Page tools
User page tools
More
What links here
Related changes
Page information
Page logs