• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Leonard Jason's blog on the IOM criteria 3/4/2015

CBS

Senior Member
Messages
1,522
<snip>
My point is all Dx criteria for ME are basically quite arbitrary.

Not even the Fukuda criteria were entirely arbitrary. They were chosen based upon a theoretical model (and studied to a significant degree by Dr. Jason who has shown that they performed according to the psychosocial model). The question at hand is our understanding of the performance characteristics for a particular set of criteria. We can chose to study and understand or we can throw up our hands and say they don't matter or they can never be fully understood. On this we may simply have to disagree as to the wisest route.
 

user9876

Senior Member
Messages
4,556
Not even the Fukuda criteria were entirely arbitrary. They were chosen based upon a theoretical model (and studied to a significant degree by Dr. Jason who has shown that they performed according to the psychosocial model). The question at hand is our understanding of the performance characteristics for a particular set of criteria. We can chose to study and understand or we can throw up our hands and say they don't matter or they can never be fully understood. On this we may simply have to disagree as to the wisest route.

I would say they are about as good as they will get and the effort should be put into pushing for more research. As it is trying to improve diagnostic criteria the phrase polishing a turd comes to mind.
 

Ember

Senior Member
Messages
2,115
My point is all Dx criteria for ME are basically quite arbitrary.
How is the ICC arbitrary? ME is defined as an acquired neurological disease with complex global dysfunctions. The criteria are grouped by regions of pathophysiology:

(a) Post-Exertional Neuroimmune Exhaustion (PENE), a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions;
(b) neurological impairments;
(c) immune impairments;
(d) energy metabolism/ion transport impairments.

The signs and symptoms are described as dynamically interactive and causally connected but grouped to provide general focus.
To me the most important question is when out in the field will it produce consistent results.
What's the good of reliability in the absence of validity?
 
Last edited:

Ember

Senior Member
Messages
2,115
I am in substantial agreement with Jason's views. He emphasizes the need for empirically validating a new definition.
Dr. Jason's standard of frequency and severity has been imported into the IOM clinical criteria. That standard needs to be clinically tested:
Frequency and severity of symptoms should be assessed. The diagnosis of systemic exertion intolerance disease (myalgic encephalomyelitis/chronic fatigue syndrome) should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity.
Assessing cognitive impairments at that level would seem to require that many patients be work-disabled prior to a diagnosis.
 

Dolphin

Senior Member
Messages
17,567
The ICC are good description of the range of symptoms in the illness. And probably a good description of the illness in the more severely affected.

However, I'm not so sure how good they are in the more mildly affected.
 

Ember

Senior Member
Messages
2,115
The ICC are good description of the range of symptoms in the illness. And probably a good description of the illness in the more severely affected.... However, I'm not so sure how good they are in the more mildly affected.
I would have fulfilled the ICC requirements before becoming disabled; I would not have fulfilled the SEID requirements.
 

Ember

Senior Member
Messages
2,115
Which part or parts of the SEID requirements would you not have fulfilled?
In my case, the postexertional malaise and cognitive impairment criteria would have been questioned because I didn't have those symptoms “at least half of the time with moderate, substantial, or severe intensity.” Neither did I have OI.
 

Dolphin

Senior Member
Messages
17,567
In my case, the postexertional malaise and cognitive impairment criteria would have been questioned because I didn't have those symptoms “at least half of the time with moderate, substantial, or severe intensity.” Neither did I have OI.
Are you considering the PEM in relation to what you were doing post-illness rather than normal activities?

The question asks:
What happens to you after you engage in normal physical or mental exertion?

The ICC requires:

A. Post-Exertional Neuroimmune Exhaustion (PENE pen׳-e) Compulsory
This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms
primarily in the neuroimmune regions. Characteristics are:
1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as
activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
2. Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms
3. Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days.
4. Recovery period is prolonged, usually taking 24 hours or longer. A relapse can last days, weeks or longer.
5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in preillness activity level.
 

Ember

Senior Member
Messages
2,115
Are you considering the PEM in relation to what you were doing post-illness rather than normal activities? ... The question asks: ... The ICC requires:
I don't understand your question. You asked me, "Which part or parts of the SEID requirements would you not have fulfilled?" But you've responded with reference to the ICC.
 

Dolphin

Senior Member
Messages
17,567
I don't understand your question. You asked me, "Which part or parts of the SEID requirements would you not have fulfilled?" But you've responded with reference to the ICC.
I did two things. I highlighted part of the SEID criteria of that some people including yourself might not be aware:
What happens to you after you engage in normal physical or mental exertion?
Some people might say that they didn't have much post-exertional malaise, but that could be because they were not doing normal activities e.g. working or studying full-time, dancing and/or exercising, social life, etc.

I also highlighted the Post-Exertional Neuroimmune Exhaustion criterion of the ICC.

I think it would be uncommon that somebody would not have much problem with normal activities and yet satisfy the ICC Post-Exertional Neuroimmune Exhaustion criterion.
 

Ember

Senior Member
Messages
2,115
I think it would be uncommon that somebody would not have much problem with normal activities and yet satisfy the ICC Post-Exertional Neuroimmune Exhaustion criterion.
My first experience of ME was to crash after jogging, a normal activity but not one that I engaged in more than half of the time. Had I then experienced cognitive impairment, according to the SEID criteria, "at least half of the time with moderate, substantial, or severe intensity,” I wouldn't have been able to do my job.