Article in Neurology Today: "An IOM Report Gives a New Name, New Diagnostic Criteria to CFS/ME"

[Dolphin]

Sympathetic article

Free full text: http://journals.lww.com/neurotodayo...eport_Gives_a_New_Name,_New_Diagnostic.1.aspx

Neurology Today:
19 March 2015 - Volume 15 - Issue 6 - pp 1,18–19
doi: 10.1097/01.NT.0000463169.81547.b9

Features
An IOM Report Gives a New Name, New Diagnostic Criteria to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Shaw, Gina

ARTICLE IN BRIEF

An Institute of Medicine panel has proposed a new name, systemic exertion intolerance disease, and new diagnostic criteria for the condition previously referred to as chronic fatigue syndrome/myalgic encephalomyelitis.

 

[Ember]

False or misleading:

Labeling the cluster of symptoms as chronic fatigue syndrome, the report noted, perpetuates misunderstanding of the disease and a dismissive attitude on the part of both physicians and the public, while myalgic encephalomyelitis is inaccurate, since there is no evidence of brain inflammation in these patients and myalgia is not a core symptom of the disease.

Previous criteria stipulated that the patient could not also be diagnosed with another fatiguing disorder such as fibromyalgia or Lyme disease if they were to receive a diagnosis of what was then known as chronic fatigue syndrome or myalgic encephalomyelitis.

Dr. Sabin said that while varying diagnostic criteria may have led to other conditions from almost every medical specialty to be misdiagnosed as chronic fatigue syndrome/myalgic encephalomyelitis, there is a distinctive history to SEID that should be well captured by the new criteria.

And they observed that most studies to date have compared SEID patients with healthy control groups, rather than with patients who have other complex diseases that have fatigue as a distinguishing feature.

 

[Dolphin]

False or misleading:

And they observed that most studies to date have compared SEID patients with healthy control groups, rather than with patients who have other complex diseases that have fatigue as a distinguishing feature.

My impression of the literature is this is true with regard to symptom studies.

 

[duncan]

Ember, yes, misleading or flat out wrong data here and there.

But the tone...the tone struck me the right way. There was a bit of validation in that tone, I thought.

So much of what has been written has been done so dismissively or begrudgingly or condescendingly.

I thought this somehow different, and not in a nuanced way - more of an overtly matter of fact, no nonsense voice.

 

[Ember]

My impression of the literature is this is true with regard to symptom studies.

No studies have used SEID patients.

 

[Dolphin]

No studies have used SEID patients.

Ok, I suppose that is literally true. But given SEID didn't exist before this came out, it's clear what they were referring to was ME/CFS.

 

[Ember]

Ok, I suppose that is literally true. But given SEID didn't exist before this came out, it's clear what they were referring to was ME/CFS.

It's misleading when the proposed clinical criteria become the research criteria retroactively.

 

[starlily88]

Maybe I am missing something but CFS was a one note name - we had fatigue - just like cancer people.............
SEID - systemic exertion intolerance disease - is one note also. It is post-malaise exertion intolerance.

ME/CFS is not fatigue as is HIV, MS, Cancer. Cancer could be called Fatigue replicated cell disease.
I know we have post-exertional malaise but that is like calling MS "muscles sheath breakdown disease"
or myelin sheath deteriation disease (MSDD).

Recognized auto-immune diseases are short, easy for public to remember - MS, Lupus, Parkinson's, HIV, etc.

I'd be happier if it was called Methylation Block or MB. Or Glutathione Depletion or GD. OR swollen lymph nodes
disease - SLND . Just kidding. Short term memory loss or STML
I think they picked SEID because it is only thing that places like Hopkins can actually quantify.

 

[Dolphin]

I'd be happier if it was called Methylation Block or MB. Or Glutathione Depletion or GD.

I don't think there is sufficient evidence for the medical profession to think this was a definite aspect of the condition and also something that other people didn't have.

 

[Amaya2014]

Dr. Natelson believes that the new name and straightforward diagnostic criteria will reduce the heterogeneity of diagnosis to some degree. “This will be much easier to use for the practicing physician,” he said.

Researchers have found that patients previously diagnosed with ME/CFS who did not have any psychiatric comorbidities were more likely to have brain abnormalities than those with such comorbidities. Dr. Natelson's current study, which is being funded by the National Institutes of Health, will conduct triple brain studies on all involved patients: lumbar punctures to assess protein and cell count, MR spectroscopy to study brain chemistry, and neuropsychological testing.

Good stuff! Thank you @Dolphin