IOM Report On ME/CFS To Be Released

[duncan]

The IOM report tasked by the NIH with, among other things, defining ME/CFS and possibly renaming it, is due to be released today.

It is important to the Lyme community for many reasons, not the least of which is many of us end up with an ME/CFS diagnosis somewhere along the line.

My sense is there is not much optimism in the ME/CFS world that this IOM report will prove broadly beneficial.

[duncan]

IOM-recommended new name for ME/CFS: Systemic Exertion Intolerance Disease - SEID.

[duncan]

Clearly and unequivocally states SEID is not somatising.

As implied in the new name, a central and defining characteristic is PEM, i.e., post-exertional malaise, which reflects the fact that exertion of any sort, physical, cognitive or emotional, adversely impacts patients' physical well being, including many organs systems (sic).

It looks like it is to receive a new ICD 10 Code.

[ChronicLyme19]

Sounds like a step forward?

Do you have a link to the report? What are the other defining characteristics? I ask because:

As implied in the new name, a central and defining characteristic is PEM, i.e., post-exertional malaise, which reflects the fact that exertion of any sort, physical, cognitive or emotional, adversely impacts patients' physical well being, including many organs systems (sic).

sounds like what a lot of Lyme patients/other chronically ill patients go through.

[duncan]

I don't have a link. Sorry. I know the report - which is LONG - can be downloaded. Links are out there, though.

It looks like the diagnostic criteria are as follows:

1) A substantial reduction or impairment in the ability to engage in pre-illness levels of activities that persists for more than six months and is accompanied by fatigue - which is often profound- of new or definite onset, not the result of ongoing excessive exertion, and not substantially alleviated by rest.

2) The worsening of patients' symptoms after any type of exertion - including physical, cognitive and emotional - known as post-exertional malaise.

3) Unrefreshing sleep

4) And at least one of the two following symptoms:
a) Cognitive impairment;
b) Orthostatic Intolerance.

Interestingly, the IOM gave little weight to the government-popular therapies of CBT and GET, pointing out that there really was little evidence suggesting either made any substantive and enduring change for the better in the lives of patients.

There are potential problems with the IOM report, which include what to me - and others - seems another loosening of already existing ICC criteria that including immunological and neurological elements. The IOM report supposedly does not emphasize these elements; many patients believe they should have been important factors.

I have not read the report in its entirety, only excerpts.

[velvetmagnetta]

Thank you for this very important post, Duncan.

Does anyone have a link to the report? Did I miss it in the previous posts? Perhaps a summary article would be easier to read?

Also, I have another question:

Does anyone have any information on orthostatic intolerance that a layman can understand? All I can find about it are really complicated medical text definitions. This is a very important finding, I believe. And from what I can gather about it, a regular doctor's check-up is likely to miss the signs. A normal blood-pressure reading will not show this problem - and it is a very big problem!

Any info for Dummies (like me) on this?

Looks like I might have to get my nerd on after all

Thanks to anyone who can accommodate me on this!

[duncan]

VM, a simple explanation of OI may be that when a person in a reclining position - sitting or laying down - suddenly stands up, and the act of standing up causes major body responses like blood pressure and heart rate and even carbon dioxide elimination to go abnormal, sometimes in dramatic and dangerous fashion.

Dizziness, nausea, and fainting can be common manifestations of OI.

Tilt table tests are a method to diagnosis OI.

I'm sorry about the link thing. I can't remember how to cut and paste it here. I've misplaced my cheat sheet, and my son is off in college so I can't tap into his know-how. Links are out there; you can find several on Phoenix Rising, an ME/CFS Forum. The report is about 250 pages long, though.

[RitaA]

http://iom.edu/Reports/2015/ME-CFS.aspx

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness
------------------------------------------------------------------------------
Released: February 10, 2015

Here’s a related blog entry:

http://www.occupycfs.com/2015/02/10/iom-report-card/

IOM: Report Card
Posted on February 10, 2015 by Jennie Spotila

velvetmagnetta,

You’re definitely no dummy. I’m not sure if the following reference will be helpful or not. It was apparently written for patients (and possibly family members), so the medical terminology is explained:

http://www.dysautonomiainternational.or ... ummary.pdf

GENERAL INFORMATION BROCHURE ON
ORTHOSTATIC INTOLERANCE AND ITS TREATMENT

Peter C. Rowe, MD
Chronic Fatigue Clinic
Johns Hopkins Children’s Center
March 2014

snippet:

Orthostatic intolerance, then, is an umbrella term for several conditions in which symptoms are made worse by upright posture and improve with recumbency. This document provides further information about neurally mediated hypotension (NMH) and postural tachycardia syndrome (POTS), two common forms of chronic orthostatic intolerance.

And here’s a quick summary of possible symptoms:

https://www.nymc.edu/fhp/centers/syncop ... erance.htm

Symptoms of Orthostatic Intolerance

Lightheadeness
Headache
Fatigue
Neurocognitive/Sleep Disorders
Visual Disturbances (black/white/spots)
Exercise intolerance
Weakness
Hyperpnea/Dyspnea
Tremulousness
Sweating
Anxiety/Palpitations
Heat

[duncan]

Ha! Rita, thank you so much for bailing my ass out of the link thing!

[RitaA]

What a coincidence! I was just posting the IOM link and a couple of other references -- apparently at the same time you were posting your comments. Good timing!