Review: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Neurological Entity?

[nerd]

Authors: Iñigo Murga Gandasegui, Larraitz Aranburu Laka, Pascual-Ángel Gargiulo, Juan-Carlos Gómez-Esteban, José-Vicente Lafuente Sánchez
Published: 27 September 2021
doi: 10.3390/medicina57101030

Abstract

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a disorder of
unknown physiopathology with multisystemic repercussions, framed in ICD-11 under the heading
of neurology (8E49). There is no specific test to support its clinical diagnosis. Our objective is to
review the evidence in neuroimaging and dysautonomia evaluation in order to support the
neurological involvement and to find biomarkers serving to identify and/or monitor the pathology.
The symptoms typically appear acutely, although they can develop progressively over years; an
essential trait for diagnosis is “central” fatigue together with physical and/or mental exhaustion
after a small effort. Neuroimaging reveals various morphological, connectivity, metabolic, and
functional alterations of low specificity, which can serve to complement the neurological study of
the patient. The COMPASS-31 questionnaire is a useful tool to triage patients under suspect of
dysautonomia, at which point they may be redirected for deeper evaluation. Recently, alterations
in heart rate variability, the Valsalva maneuver, and the tilt table test, together with the presence of
serum autoantibodies against adrenergic, cholinergic, and serotonin receptors were shown in a
subgroup of patients. This approach provides a way to identify patient phenotypes. Broader studies
are needed to establish the level of sensitivity and specificity necessary for their validation.
Neuroimaging contributes scarcely to the diagnosis, and this depends on the identification of
specific changes. On the other hand, dysautonomia studies, carried out in specialized units, are
highly promising in order to support the diagnosis and to identify potential biomarkers. ME/CFS
orients towards a functional pathology that mainly involves the autonomic nervous system,
although not exclusively.

 

[wabi-sabi]

I particularly like this paragraph:

In the latest proposal for a terminological change in this pathology, the US National Academy of Medicine advocates for the name of Systemic Exertion Intolerance Disease [16], highlighting an important feature of the syndrome, the marked and rapid fatigability together with a prolonged recovery time (at least 24 h). This aspect differs from the “central” fatigue experienced by patients with pathologies, such as multiple sclerosis or Parkinson’s disease. In them, rehabilitation including physical exercise is mandatory. It is a pillar in the management of these diseases, being irrelevant to the presence of postexertional discomfort. In contrast, the “chronic status” of ME/CFS patients deteriorates or worsens significantly if physical exercise is incorporated into their treatment [67–69].

 

[Rufous McKinney]

In the latest proposal for a terminological change in this pathology, the US National Academy of Medicine advocates for the name of Systemic Exertion Intolerance Disease [16],

I happen to have an SEID diagnosis.....my US doctor seems to like the term, and I never have bothered to debate the issue.

 

[wabi-sabi]

Do you know what ICD-10 code you have?

 

[wabi-sabi]

happen to have an SEID diagnosis.....

This is the issue that MEAction is currently trying to handle with the ICD-10-CM revision.

While your doc may have told you (and written in your chart) SEID, SEID doesn't actually exist in the ICD-10-CM for the US. That means the disease doesn't exist for research, insurance, or CMS purposes.

That's why it's so very important to get the coding fixed. Essentially, the words SEID or ME/CFS just sit in your doc's office file cabinet. It's the code number that gets into the electronic health record (because computers like numbers) and matters to all the entities that track diseases because everyone uses computers to gather data nowadays.

 

[wabi-sabi]

Here is a website for checking ICD-10 codes.

https://www.icd10data.com/

If you know your code, you can type it in. You can also type in the name of your disease or condition to see the corresponding code. SEID does not appear to exist.

 

[Pyrrhus]

Thanks so much for posting!

Related discussion:

Medicina Journal Special Issue: "Chronic Fatigue Syndrome: From Clinical Observations to Unifying Hypotheses of Disease Mechanisms" (2021)
https://forums.phoenixrising.me/thr...-hypotheses-of-disease-mechanisms-2021.85702/

 

[Rufous McKinney]

While your doc may have told you (and written in your chart) SEID, SEID doesn't actually exist in the ICD-10-CM for the US. That means the disease doesn't exist for research, insurance, or CMS purposes.

I guess I was told, or otherwise thought, that it all codes to the same one place.

 

[Rufous McKinney]

If you know your code, you can type it in. You can also type in the name of your disease or condition to see the corresponding code. SEID does not appear to exist.

I found a code on this one referral:

S 53.82

chronic fatigue, unspecified.

I should at least have G 93.3- post viral....

 

[wabi-sabi]

I found a code on this one referral:

S 53.82

chronic fatigue, unspecified.

Yes, that's the code I have too.

We very much need to get the coding problem fixed! ME/CFS doesn't exist in the ICD-10-CM for the US.

 

[Rufous McKinney]

Essentially, the words SEID or ME/CFS just sit in your doc's office file cabinet. It's the code number that gets into the electronic health record (because computers like numbers) and matters to all the entities that track diseases because everyone uses computers to gather data nowadays.

I see an old school doctor. Something must get reported, but I sure don't know what. Paper files only, the office manager is who knows pretty much everything. No nurse. No other doctors.

If I ask for a copy of a test result, I seem to come back with a Xerox that can't be read.

I was never able to secure my medical files from Blue Shield. So nothing was transferred over. I cannot begin to explain what happened for 10 years, over in that office. What did that doctor put in my files? Other than send her to a psych ward, as her teeth are coming out of her mouth, the patient reports.

the mouth isn't part of the human body, did't you know?

 

[wabi-sabi]

I guess I was told, or otherwise thought, that it all codes to the same one place.

Well, each code has a number of words diagnoses that apply to it. Coding is just as complicated as the diagnosing, I think. That's why medical offices have people working as coder and billers.

 

[Rufous McKinney]

Yes, that's the code I have too.

We very much need to get the coding problem fixed! ME/CFS doesn't exist in the ICD-10-CM for the US.

benign ME exists in that other code.......I'll be asking why its not being used.

 

[wabi-sabi]

benign ME exists in that other code.......

MEAction is also working to take the word benign away from ME, since ME clearly isn't benign.

 

[Rufous McKinney]

benign away from ME, since ME clearly isn't benign.

I assumed that was the past polio baggage.....

So it a total joke.

How many people have ME?

who knows? The numbers sure dont' make sense. Most undiagnosed, so we announce a number. out of thin air.