Unfortunately, it doesn't. I am severe and can hardly read more than a few lines of text. I need help even typing this.
My question is simple, yet I have never received a straight answer from IOM criteria critics.
The question might be simple but sometimes the answers take longer to explain and I appreciate that you're not well enough to read much. Neither am I, so this might be 'doable' if you read it in small chunks. I have permission from the writer to share publicly.
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New Norwegian Study Suggests CDC IOM ME/CFS Diagnostic Criteria Tend to Select Patients with Depressive Symptoms
JERROLD SPINHIRNE·
THURSDAY, JUNE 7, 2018
In 2017, the Centers for Disease Control and Prevention (CDC) adopted new diagnostic criteria developed by the Institute of Medicine (IOM, now renamed the National Academy of Medicine) to replace the CDC’s previous diagnostic criteria for chronic fatigue syndrome (CFS) based on the 1994 Fukuda research definition of CFS.
The new IOM criteria are to be used to diagnose what the CDC is now calling “ME/CFS” and the 2015 IOM report calls “systemic exertion intolerance disease” (SEID). To avoid confusion with “ME/CFS” as diagnosed by the more specific 2003 Canadian Consensus Criteria (CCC), the new CDC IOM diagnosis will be called “SEID” here.
The CDC adopted the IOM SEID diagnostic criteria before it had been validated by independent research. Research done by Leonard Jason’s group at DePaul University, rather than validating the IOM criteria, suggests that because the four required SEID symptoms are commonly reported by patients with a variety of medical and psychiatric disorders, SEID is, in fact, not a distinct disease, despite its name.
“The findings indicate that many individuals from major depressive disorder illness groups as well as other medical illnesses were categorized as having SEID. The past CFS Fukuda et al. prevalence rate in a community based sample of 0.42 increased by 2.8 times with the new SEID criteria.”
(From Jason et al. “Unintended Consequences of not Specifying Exclusionary Illnesses for Systemic Exertion Intolerance Disease.”
http://www.mdpi.com/2075-4418/5/2/272/htm)
Further research evidence of the unfitness of the new CDC SEID criteria to be put into use by doctors, or to be part of new physician education programs, comes from a new Norwegian study of 120 adolescent subjects previously determined to have CFS using the NorCAPITAL group’s criteria.
(Asprusten et al. “Systemic exertion intolerance disease diagnostic criteria applied on an adolescent chronic fatigue syndrome cohort: evaluation of subgroup differences and prognostic utility.”
http://bmjpaedsopen.bmj.com/content/2/1/e000233)
These CFS subjects were then additionally evaluated for meeting the SEID criteria. 45 of the CFS subjects were SEID-positive, 69 were SEID-negative, and 6 were unclassifiable because of insufficient data.
The Norwegian research findings indicated that:
“No cardiovascular, infectious, inflammatory, neuroendocrine or cognitive biomarker differed significantly between the SEID-positive and the SEID-negative groups.”
“The SEID-positive group had significantly more depressive symptoms.”
From the study’s Conclusion section:
“This study questions the discriminant and prognostic validity of the SEID diagnostic criteria in adolescent CFS, and suggests that the criteria tend to select patients with depressive symptoms. These results corroborate earlier findings and question the concept of classifying fatigued patients based on symptom phenotype.”
This sample of CFS subjects had been screened for clinical depressive disorders, but depressive symptoms considered secondary were allowed.
These findings suggest that the SEID diagnostic criteria do not discriminate between patients with physical abnormalities detectable by laboratory testing and those patients with subjective symptoms. Also, the SEID criteria are biased towards selecting patients with depressive symptoms.
In practice, doctors will be diagnosing SEID from a general population which has not been screened for clinical depressive disorders. Because the SEID criteria have no exclusions, patients with a primary, i.e., not determined to be subsequent to another disease, undiagnosed clinical depressive disorders will be eligible to be diagnosed with SEID.
In the Jason et al. study cited above, 47% of a group of patients diagnosed with primary melancholic depression (a severe form of clinical depression excluded by the Fukuda CFS definition) met the diagnostic criteria for SEID.
As independent research is now showing, it appears to have been premature and irresponsible of the CDC to begin recommending the unvalidated IOM criteria for the diagnosis of “ME/CFS” (SEID).
Nevertheless, the CDC is now recommending solely the SEID criteria for use in diagnosing “ME/CFS.” The CDC website now has no recommendation for diagnosing CFS.
Also, no provision is made on the CDC ME/CFS website to prevent people with myalgic encephalomyelitis (ME) from being misdiagnosed with SEID. Patients with primary psychiatric disorders also will suffer from being misdiagnosed with SEID because they will be less likely to receive appropriate psychiatric treatment.
ME is a separate disease with its own current diagnostic and research criteria, the ME-ICC, which the IOM report and the CDC are attempting to hide within their new “one-size-fits-all” unvalidated SEID diagnosis. Previously, the CDC on its CFS website, as recently as 2012, had acknowledged that ME is a separate disease with its own case definition:
"The name myalgic encephalomyelitis (ME) was coined in the 1950s to clarify well-documented outbreaks of disease; however, ME is accompanied by neurologic and muscular signs and has a case definition distinct from that of CFS.”
At the very least, the CDC ME/CFS website should acknowledge that the neurological disease ME must be ruled out by doctors using the 2011 ME-ICC and 2012 IC Primer before making an “ME/CFS” (SEID) diagnosis. Since 2015, ME G93.3 has been excluded from the CFS R53.82 diagnosis in the US version of ICD-10. However, few doctors or researchers seem to be aware of this change because the CDC has not publicized it, even though the CDC controls the US version of the ICD.
See ME advocate Gabby Klein’s recent article “Beware of Aiding in the Burial of ME!” for an accurate account of how the CDC and its allies are now using the SEID criteria to hide the separate disease ME within their newly created group of medical and psychiatric disorders called “ME/CFS,” which is actually newly invented SEID.
https://relatingtome.net/2018/05/17/beware-of-aiding-in-the-burial-of-me/
As Gabby Klein reports, the former CFIDS Association of America (CAA), now renamed the Solve ME/CFS Initiative (SMCI), and the ironically named US group MEAction are now attempting to promote further the SEID misdiagnosis by unnecessarily including the IOM report’s recommendation to use the SEID criteria for diagnosis and physician education in Senate resolution S.Res.508, dated May 15, 2018.
See also my previous Note “The Ambiguous Term ME/CFS: Why ME and CFS Cannot Be Combined” for why the term “ME/CFS” is vulnerable to this type of exploitation by unprincipled organizations using “bait and switch” tactics to further their misguided anti-ME political agendas.
https://www.facebook.com/notes/jerrold-spinhirne/the-ambiguous-term-mecfs-why-me-and-cfs-cannot-be-combined/1527608180644089
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