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Dr. Enlander comment on the IOM

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
There are three issues here. The first is the impact on clinical diagnosis. The second is the impact on research cohorts, which might become substantive over time even though this is not a research definition. The third one is the interpretation or operationalization of the criteria, especially PEM. This is the potential problem, but it always has been for every definition except Oxford.

The lack of clear biomarkers are the number one reason why this report process is premature. I think the panel knows that. Its why they require a review within five years. Things are changing, and within five years we might have a much better understanding. That is the hope anyway.
 

Nielk

Senior Member
Messages
6,970
There are three issues here. The first is the impact on clinical diagnosis. The second is the impact on research cohorts, which might become substantive over time even though this is not a research definition. The third one is the interpretation or operationalization of the criteria, especially PEM. This is the potential problem, but it always has been for every definition except Oxford.

The lack of clear biomarkers are the number one reason why this report process is premature. I think the panel knows that. Its why they require a review within five years. Things are changing, and within five years we might have a much better understanding. That is the hope anyway.
So why did HHS pY a million dollars for this contract at this time? What a waste!
 

nandixon

Senior Member
Messages
1,092
So why did HHS pY a million dollars for this contract at this time? What a waste!
Because the formal U.S. criteria for CFS has desperately needed a requirement of PEM (even though all of us CFS sufferers here in the U.S. know that real CFS, i.e., ME, has in actuality required PEM all along).

Now we finally have gotten that requirement with SEID, and research going forward will hopefully exclude people who don't have PEM.
 
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snowathlete

Senior Member
Messages
5,374
Location
UK
PEM is mandatory. look at page two chart. they call PEM - Post exertional malaise and or fatigue - meaning it's either called malaise or fatigue. But, the PEM symptom is mandatory,

That's the page I quoted so I think we are talking about the same bit. I think you are probably right. It is very badly written. If you only look at the title of box 2: 'Post-exertional malaise AND/OR fatigue' you might simply conclude that it means one or the other and thefore post-exertional malaise isn't a requirement. The specific sentance that follows causes the exact same problem again with the optional Or operator. It's only really the second part of that box which properly describes PEM without giving the option for it not to be present:
...and a tendency for other associated symptoms within the patient’s cluster of symptoms to worsen. There is a pathologically slow recovery period - usually 24 hours or longer.

I think this really highlights what @alex3619 is saying above about interpretation or operationalization of criteria.

The poor format might be one reason why HHS didn't want to adopt it.
 
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Nielk

Senior Member
Messages
6,970
That's the page I quoted so I think we are talking about the same bit. I think you are probably right. It is very badly written. If you only look at the title of box 2: 'Post-exertional malaise AND/OR fatigue' you might simply conclude that it means one or the other and thefore post-exertional malaise isn't a requirement. The specific sentance that follows causes the exact same problem again with the optional Or operator. It's only really the second part of that box which properly describes PEM without giving the option for it not to be present:


I think this really highlights what @alex3619 is saying above about interpretation or operationalization of criteria.

The poor format might be one reason why HHS didn't want to adopt it.

It would have been a lot easier and cheaper to just simify the instructions of the CCC which is what CFSAC proposed than to go through this whole IOM process.
 

halcyon

Senior Member
Messages
2,482
The naivete of the IOM criteria are the lack of exclusions which are contained in previous criteria.
If this is true, this does seem like a very valid criticism of the IOM criteria. I haven't read the whole report yet, but searching through it I can't find any. Am I missing something? This is really surprising to me because they cover, in decent detail, all of the exclusion criteria of the various other definitions in the report. The only exclusions in the main IOM criteria list are lifelong fatigue, fatigue due to ongoing exertion, or fatigue relieved by rest.
 

halcyon

Senior Member
Messages
2,482
Are they solely relying on the inclusion of PEM to exclude all other possibilities? If so, that seems really sloppy to me.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
If you only look at the title of box 2: 'Post-exertional malaise AND/OR fatigue' you might simply conclude that it means one or the other and thefore post-exertional malaise isn't a requirement.
The UK's NICE guidelines are written in exactly the same sloppy manner which I've always thought makes NICE ambiguous. But the CCC definitely requires post-exertional malaise and/or post-exertional fatigue and/or post-exertional pain or a worsening of other symptoms in reason to exertion.

The section of the CCC that I'm looking at says: "There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatiguability, post-exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patient's cluster of symptoms to worsen. There is a pathologically slow recovery period - usually 24 hours or longer." So the meaning is clear here, I think.
 
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Messages
15,786
So the meaning is clear here.
I think everyone's right :D The CCC does require PEM, but it's not easy for unfamiliar doctors to see that without careful and thoughtful reading.

The IOM report has the same problem. PEM is clearly required, but doctors will have to read carefully to see what it is. Hence guides for the doctors will need to make that point very clearly and succinctly.

We need to find a way to effectively communicate what PEM is, which even a clueless GP can understand. And then we need to put it at the top of the guide in a large, bolded, and underlined font in bright red ink.
 

A.B.

Senior Member
Messages
3,780
So why did HHS pY a million dollars for this contract at this time? What a waste!

There are doctors who wouldn't have accepted any definition coming from patients or "colluding" doctors. This is how the CCC and ICC are seen in certain circles. Maybe the IOM report was a necessary political maneuver.