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Emperor CDC’s New Clothes

Nielk

Senior Member
Messages
6,970
The much-anticipated revision of CDC’s website on ‘ME/CFS’ section “Information for Healthcare Providers” was unveiled July 12, 2018. The main reason for the revision was to adopt and educate medical professionals to diagnose people using the government-sponsored clinical IOM/SEID criteria and to update the toolkit based on current scientific data.

The result of the CDC website update is full of deceptions and in many ways worse than the old toolkit for medical professionals.

Problems and Danger with Adopting and Using the IOM/SEID Criteria
ME advocates have warned that the 2015 government-sponsored IOM/SEID criteria are even worse than the failed and highly criticized government 1994 Fukuda definition. Critics of the Fukuda definition argue that it was overly broad with too much emphasis on the one common symptom ‘fatigue’. The IOM/SEID definition is even more vague. Unlike the Fukuda, it doesn’t specify exclusions which means that many people suffering from primary psychiatric and psychological conditions will get a diagnosis of IOM/SEID.

Even worse, the new criteria do not demand any neurological nor immune dysfunction symptoms! Investigators (Dr. Leonard Jason, Frank Twisk and Asprusten et al) who have looked into the IOM/SEID criteria and published papers comparing it with other definitions have warned that it does not define the neuroimmune disease myalgic encephalomyelitis (ME) as defined since 1969 by the World Health Organization (WHO) and coded under Neurological disorders as ICD – G93.3.

Entire blog here - https://relatingtome.net/2018/07/18/emperor-cdcs-new-clothes/
 

aaron_c

Senior Member
Messages
691
I think there's a very important distinction we need to make between the ME definition we use for research and the ME definition the government disseminates to clinicians. It's necessary to exclude people with comorbidities like depression from research into ME, at least until we have a reliable biomarker, because otherwise we risk contaminating the research sample.

However I think it's good that the definition that clinicians use doesn't exclude people based on comorbidities like depression. Some people both have ME and are depressed, and if we define ME as only those cases where the patient is cheerful, I would think we risk denying some people disability benefits or access to appropriate medical care. Yes we already face an uphill battle to get benefits and medical care, but things have slowly been improving (see the new policy social security put in place in 2014 conerning "CFS"). Frankly, I look forward to the day when one mention of depression to a psychologist ten years ago doesn't tank a CFS social security application. And the CDC website is clearly intended as a tool for physician education, not a guideline for research.

While the NIH Clinical Center Study doesn't exclude people with depression, it has a number of filters in place to prevent people who only have depression from taking part. One of these filters is that PEM is required part of the disease, which really makes me much less worried.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I want to elaborate on what aaron_c said.

SEID is a clinical not a research definition. We are used to research definitions. Research definitions have exclusions to remove confounds from the cohort. A clinical definition does not need to do this, and its actually undesirable that it do this. Doctors normally check for alternative diagnoses anyway, so its a bit redundant. By excluding CFS or ME if someone has another disease, any patient with both diseases will be excluded from appropriate medical care.

Lots of research evidence was excluded as part of the IOM review process, using evidence based methods. As I started saying in the lead up to the IOM report starting, this kind of methodology works well in heavily researched areas. However, both CFS and ME are massively under-researched and a lot of that has been heavily biased toward particular theories over the decades. This is both because of lack of interest, and lack of funding, though the two are connected.

So while the IOM report has substantial influence politically, it was always flawed as a scientific enterprise.

Now this does not mean that SEID could not be used in research on several grounds, but for biomarker identification and clinical trials they would have to do a lot of work. One of those would be to introduce diagnostic exclusions. This is what happens routinely in most medical research. If you have two immune diseases, for example, they cannot use you in a clinical trial designed for either one, unless the focus is specifically on those two diseases combined.

For example I have diabetes (though highly atypical and I think its more an ME complication) so I was rejected for one NCNED study on I think NK cells due to having immune complications. These complications are called confounds and can distort the findings in a study.