#PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC

lilpink

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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.

"
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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Wally

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@lilpink and @Nielk - Awake late here on the West Coast and just checked the number of signatures on this petition. Looks like you are closing in on 3000 signatures. Pretty amazing to see how this petition has garnered so much support in such a short period of time.

Reaching 5000 signatures or more would not surprise me based on how quickly people have stepped up to have their voice heard through this petition. (@Nielk - petitions with signatures in the thousands make for excellent visual aids - especially when hand delivered to the recipients and/or used in other types of presentations. :rolleyes:)

Link to review and sign this petition is located here - https://www.change.org/p/the-us-dep...omyelitis-me-as-defined-by-icc-now/u/23073066
 

lilpink

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@lilpink and @Nielk - Awake late here on the West Coast and just checked the number of signatures on this petition. Looks like you are closing in on 3000 signatures. Pretty amazing to see how this petition has garnered so much support in such a short period of time.

Reaching 5000 signatures or more would not surprise me based on how quickly people have stepped up to have their voice heard through this petition. (@Nielk - petitions with signatures in the thousands make for excellent visual aids - especially when hand delivered to the recipients and/or used in other types of presentations. :rolleyes:)

Link to review and sign this petition is located here - https://www.change.org/p/the-us-dep...omyelitis-me-as-defined-by-icc-now/u/23073066
It's doing everso well isn't it? It seems to have hit a nerve and resonated with a huge number of patients whose voice has hitherto remained silent. It has been assumed that those who oppose the IOM/SEID construct and voice those objections are a minority of 'radicals' but this petition is illustrating very clearly that if 'we' are radical then a lot of patients agree with that stance and are happy to come along on the journey too. Of course this 'radical view' is one based on logic, plus a full understanding of the history and politics of the disease to date, plus a desire to strive for the best possible terrain on which research can be based to genuinely help patients and on which patients can be properly diagnosed. The are no vested interests other than the well-being of people with ME, and also of those who become entangled in the web of this disease by virtue of sloppy criteria. The mis-diagnosed and the missed diagnosed are an important factor in this point of view, they are not forgotten.
 

Judee

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anniekim

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@Neunistiva, you wrote, “Can someone please explain to me how can using IOM criteria select for people who only have depression and not ME/CFS? Depression does not cause PEM, depressed people feel a bit better after exercise”

Firstly, PEM is not the same as the distinct post exertinal neuro immune exhaustion (PENE) that people with ME get. ICC describe PENE and how it is different to post exertional malaise that can happen in a few conditions. Lilipink in comment 24 has put up a photo that describes in full the definition of PENE and the definition of PEM which as you can see are different. Major depressive disorder (MDD), includes a lot of fatigue and attempting every day activties can increase the feelings of fatigue and malaise. Prof Leonard Jason in his study, linked to above by Lilipink, which examined applying to different illness groups, including MDD, SEID criteria showed how some of these non ME patients would meet SEID criteria.

In the study he said, ‘to meet the post-exertional malaise criteria, a patient would need to have indicated presence of at least 1 of our two post-exertional malaise symptoms: sickness/fatigue for >24 h after exercising or experiencing high levels of fatigue after everyday activity." People with Major Depressive Disorder would fulfil ‘experiencing high levels of fatigue after everyday activity.’ Some of them would also meet the 3 other symptoms, fatigue, sleep problems and cognitive problems required for a SEID diagnosis and so could be diagnosed with SEID.

Finally, you mention how in your first years of illness you did not meet all the ICC criteria. The ICC criteria do include atypical ICC for those who do not meet all the ICC criteria.
 
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alex3619

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There are distortions in the discussion around PEM. For members of S4ME you can find my commentary here -

https://www.s4me.info/threads/pem-p...review-of-distortions-in-the-discussion.5224/

Basically not all the information is being considered. I support ICC in research, and I think its the current best clinical criteria if exclusions are not applied dogmatically, but many of the arguments about the alternatives are incomplete or distorted. We should support the ICC for the right reasons, not the wrong ones.

None of the issues will be resolved until we have good diagnostic biomarkers for at least PEM/PENE if not ME. The two day CPET protocol is the only one we have right now, and I would not want to see it used without discrimination on moderate or more severe patients.
 

alex3619

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This is a grossly distorted view. The IOM actually has a much more comprehensive review than the ICC, though the report is flawed for other reasons. Anyone considering this carefully should compare the full reports, not the massively truncated descriptions.

Again, I support the ICC as the best research definition, and if used flexibly as the best clinical definition, but we should support it for the right reasons.
 

anniekim

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The issue for me is the SEID IOM criteria have shown in studies by Jason and a recent Norwegian study to bring in other conditions and why I think at this moment in time the ICC criteria are the best we have in identifying a discrete disease, and there can be a degree of flexibility.

Of course the discovery of decent bio markers for the post exacerbation of symptoms would be the best option. Yes, the CPET does do this but, as said above, it is not suitable for severe and v severe and probably a fair few in the moderate category. I still haven’t recovered to the baseline of functioning I was at before a very short walk 8 years ago, so I worry that CPET could make someone worse not just for a short time but long term.
 

Nielk

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This is a grossly distorted view. The IOM actually has a much more comprehensive review than the ICC, though the report is flawed for other reasons. Anyone considering this carefully should compare the full reports, not the massively truncated descriptions.

Again, I support the ICC as the best research definition, and if used flexibly as the best clinical definition, but we should support it for the right reasons.
The ICC was created for diagnostic and research purposes - the reason being that the many ME experts who authored the ICC knew from past experience that the original aim of criteria gets blurred. Past CDC definitions for "CFS" or "ME/CFS" when directed for research, were actually used for both research and clinical purposes and vice-versa - criteria created for diagnostic purposes were widely used for research.

This is exactly what we are already experiencing with the IOM clinical definition. Dr. Bateman is providing the cohorts for some of the new NIH funded "ME/CFS" consortia and she is suing the IOM criteria to select those cohorts!

ME advocates warned about this from the start when they vigorously protested HHS's contract with the Institute of Medicine to create new clinical criteria. Later on, when the process had started, The IOM panel chair, Ellen Clayton, attempted to appease those who protested the process by promising that it will only be used in clinical settings but, for those who had decades of experience with HHS/CDC knew very well that the diagnostic criteria will be used for research.
 

Nielk

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This is a grossly distorted view. The IOM actually has a much more comprehensive review than the ICC, though the report is flawed for other reasons. Anyone considering this carefully should compare the full reports, not the massively truncated descriptions.

Again, I support the ICC as the best research definition, and if used flexibly as the best clinical definition, but we should support it for the right reasons.
It's not the reports that are in question, it's the resulting criteria which when flawed will adversely affect ME patients, as they have done for the past decades.