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NIH Post-Infectious ME/CFS Study
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==Criticism== Some patients have expressed concern at investigator Doctor [[Brian Walitt]] being a proponent of the [[biopsychosocial model|biopsychosocial]] illness model of ME/CFS. Other concerns have been expressed regarding patient inclusion and exclusion criteria and the inclusion of two controversial entities ([[chronic Lyme disease|post-treatment Lyme]] and functional movement disorder) as control arms in the study - although the functional movement disorder group was later removed.<ref name="PR43076" /> American patient group [[ME Advocacy]] accused the [[National Institutes of Health]] of "continued [[research bias in ME/CFS|institutional bias]]", calling the study "a road map for proving psychosomatic causation of CFS" and calls for the study to be withdrawn.<ref>{{Cite web|url=https://www.meadvocacy.org/nih_clinical_study_a_case_of_continued_institutional_bias | title = NIH Clinical Study: A Case of Continued Institutional Bias | last = | first = |website=[[ME Advocacy]]|access-date=2020-06-26}}</ref><ref>{{Cite web|url=https://www.meadvocacy.org/further_analysis_of_nih_clinical_cfs_study | title = Further Analysis of NIH Clinical CFS Study | last = | first = | last2 = | first2 = |website=[[ME Advocacy]]|access-date=2020-06-26}}</ref> Emeritus Professor [[Jonathan Edwards]] has criticized the sample size in combination with the large number of tests performed, arguing that it is easy to miss something important with a cohort of 40, and that the large number of tests makes obtaining reliable statistics difficult.<ref name="PR43076">{{Cite web|url=https://forums.phoenixrising.me/threads/details-on-nih-study.43076/ | title = Details on NIH study | website = Phoenix Rising ME/CFS Forums|language=en-US|access-date=2020-06-26}}</ref> [[Carol Head]] of the [[Solve ME/CFS Initiative]] said she was "deeply troubled by [[Brian Walitt|Dr Walitt's]] comments".<ref>{{Cite web|url=https://twitter.com/plzsolvecfs/status/701826226424426496 | title = plzsolvecfs status 701826226424426496 | last = Head | first = Carol | authorlink=Carol Head | date = |website=Twitter|language=en|archive-url=|archive-date=|access-date=2020-06-26}}</ref> [[MEAction]] submitted a series of questions to the investigators following concerns raised about some aspects of the study, and some members of the study team.<ref>{{Cite web|url=https://www.meaction.net/2016/03/04/meactions-questions-for-nihs-intramural-study-team/ | title = #MEAction's Questions for NIH's Intramural Study Team | date = 2016-03-04 | website = #MEAction|language=en-US|access-date=2020-06-26}}</ref> It also suggested patients sign a petition encouraging the NIH to include patients at the center of the study design.<ref>[http://my.meaction.net/petitions/nih-put-me-cfs-patients-at-heart-of-research-design-process NIH: Put ME/CFS patients at the heart of the research design process]</ref> Advocate and patient [[Mary Schweitzer]] criticized the study for not properly taking into account the history of the disease or the small but experienced group of doctors already treating it, saying "once again NIH is going off on its own, as if we were never here at all".<ref>{{Cite web|url=http://slightlyalive.blogspot.com/2016/03/an-open-letter-to-dr-collins-and-dr.html | title = Slightly Alive: An Open Letter to Dr. Collins and Dr. Nath on the NIH internal ME/CFS study | last = Schweitzer | first = Mary | date = 2016-03-04 | website = Slightly Alive|access-date=2020-10-11}}</ref>
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