IOM Gives Chronic Fatigue Syndrome New Name and Definition

[Gingergrrl]

Alex, I read the link and you are right, that is actually a pretty decent article! Kudos to Australia!

 

[taniaaust1]

From Wikipedia: Seid or Seiðr, an Old Norse term for a type of sorcery or witchcraft....

Minkeygirl.. also from wiki

"In the Viking Age, the practice of seid by men had connotations of unmanliness or effeminacy, known as ergi, as its manipulative aspects ran counter to masculine ideal of forthright, open behavior.
............

So Seid could be said to be a new representive of this being a "woman's" disease.. effeminacy in men. (men with female traits).

 

[halcyon]

Minkeygirl.. also from wiki

"In the Viking Age, the practice of seid by men had connotations of unmanliness or effeminacy, known as ergi, as its manipulative aspects ran counter to masculine ideal of forthright, open behavior.
............

So Seid could be said to be a new representive of this being a "woman's" disease.. effeminacy in men. (men with female traits).

Well, this disease has spiked my prolactin level and crashed my testosterone, so maybe it's not far from the truth.

 

[Sidereal]

Well, this disease has spiked my prolactin level and crashed my testosterone, so maybe it's not far from the truth.

Off-topic but high prolactin levels in this disease are another indication of low dopamine. These two antagonise each other.

 

[Dr.Patient]

Comment posted on Medscape's article:

I read through the entire report, and most of my doubts were cleared in the table 7-1, Operationalizing the proposed criteria for diagnosis. The last column's heading makes it all clear, "Abnormal Findings on ?liable objective tests that, when considered in the context of other symptoms, support the diagnosis of ME/CFS (these tests are not routinely required, nor do negative results preclude the diagnosis).

Still, including sleep, cognitive, and orthostatic intolerance as mandatory criteria makes it confusing, The report itself acknowledges that "unrefreshing sleep are "almost" universally present " Page 6, and "cognitive impairment and orthostatic intolerance are "frequently" present " Page 6 and 7. Including them as mandatory, when they are not universally present like fatigue and PEM, will lead more physicians to avoid diagnosing this illness, some of them who may not be open to this condition to begin with.

This above, and the statement in Table 7-1 that "negative results do not preclude the diagnosis" are not prominently shown in the Diagnostic algorithm Fig 7-1, and Proposed diagnostic criteria Box 7-1. So for physicians who are moving quickly through their day, absence of these prominently on the algorithm and diagnostic criteria will only make them skip the diagnosis.

Also, in the first criterion, "of new or definite onset" of fatigue- there are several patients for whom this has gradually evolved over several years, so they cannot even pinpoint to a even a year when this happened. Case in point, my mother. I diagnosed her as having CFS only after I've had it myself for the last 3 years. For years in the 1990s, when she was in her 50s, she hadn't had as much energy as people her age and conditions (diabetes, HTN, etc). I could not, nor she could think of even a year when this started. I would say, in retrospect, this was gradual over a decade or so. So, "definite" onset is a little confusing.

Also, your criteria do not show the severities of the illness. Although the Box 3-1, page 57, shows subtypes of patients, it is important to include the severity in the criteria. While research will go on to identify biomarkers, treatments, etc, the present and dire immediate need is Acknowledgment of this illness by physicians, and Disability support. So, the criteria should address these immediate needs.

I propose "mild" ( people are able to work full time, but have cut down other personal or social activities) "moderate" ( can work part time only), "severe" ( unable to work at all, but not home bound, can leave home a few times a week), and "profound" (home or bed bound).

Patients identified in the mild or moderate stages, can be educated about the need to live within their energy envelope, so it may not deteriorate to severe or profound.

Also, patients in the mild stage are not looking for disability, they are wondering about their condition, and want to get better.

Medical students and primary care residents must have a mandatory 1 month or at least 2 weeks' rotation in CFS, where they see severe home and bedbound patients as well. This will ensure the coming generation of physicians will be fully aware of this condition.

Thank you for your time!
Vijay.

 

[Dr.Patient]

Comment posted on Medscape's article:

Another important criterion in the Diagnostic Criteria should be that "adequate treatment of comorbid conditions has not improved the patient's fatigue significantly." Otherwise, physicians will attribute the fatigue to these comorbid conditions and continue to be frustrated by the lack of response to treatment, may also blame the patient for noncompliance.

The ICC also allows for some variation without disproving that a patient has CFSME. "Atypical myalgic encephalomyelitis: meets criteria for postexertional neuroimmune exhaustion but has a limit of two less than required of the remaining criterial symptoms. Pain or sleep disturbance may be absent in rare cases."

The IOM criteria should also make an allowance for such atypical cases, these patients do have fatigue and PEM, the two cardinal criteria, but may or may not have other kinds of symptoms. The IOM criteria cannot exclude such patients from a diagnosis of MECFS.

 

[Valentijn]

If someone's doctor is allowing "fatigue" to qualify as fulfilling the PEM requirement, fiddling with the exclusionary requirements isn't going to help. The doctor is going to need to learn to read, and look at the part describing PEM.

Since PEM doesn't exist in any other disease, it should then become quite simple to accurately diagnose the patient, or to exclude SEID as a possible diagnosis for them. A huge list of exclusionary diseases is no longer needed, since there is a unique symptom required for diagnosis, so it doesn't make any sense to fixate on the lack of exclusionary diagnoses.