Another Critique of the IOM

[Cort]

Like they say - everyone is a critic. Ken Friedman has been a member of CFSAC and has done quite a bit of advocacy and other work on ME/CFS. He has been in the thick of things for a long time. My critique of Ken's critique is below. While there are some good points in here they're mostly secondary for me. We can all things we don't like about it. The question is whether they outweigh the good points? For me

The words Systemic and Exertion and Disease -

Ken focused on certain connotations of system and exertion (and ignored others). I agree with him on "disease" but disease was chosen to emphasize the seriousness of the disorder. It's possible, though, that they went too far with disease.

New criteria for diagnosing the illness should not have been recommended without evidence of their validity

This was apparently impossible since they didn't have anyone in the group who could do this. If Lenny Jason was on board that would have been different. Essentially Friedman seems to be saying -if you can't test it- don't propose new diagnostic criteria. Most of the criteria, however, were based on statistical studies. In any case the new criteria must better than the criteria they are replacing - the Fukuda criteria.

there was consensus that the adoption of the IOM’s proposed diagnostic criteria would complicate the evaluation of clinical trials. The use of a new set of
criteria for accepting patients into studies, when older studies have used different criteria, will make the comparison of old and new studies more difficult if not impossible. -

Yes, it will. But any new diagnostic criteria will do this. What's better - using better diagnostic criteria that requires PEM and going through the change that requires or sticking with the old and out-of-date Fukuda criteria. That's a pretty easy question to answer for me.

The proposed, new diagnostic criteria may result in an ICD code reclassification of ME/CFS from a neurological disorder to a mental disorder.

I don't really understand this and don't know much about ICD, but the authors specifically proposed the opposite.

The report does not indicate that the cause of gender disparity found inME/CFS is an area of insufficient research nor does it make the recommendation that research funding should be increased to investigate this gender disparity.

I think Ken has a good idea here, it's a nice addition

Cluster outbreaks assumed to represent one illness

The last cluster outbreak reported was about 30 years and they stretch back long before that. Nobody has done any research on a "cluster outbreak" in 30 years. I don't see that it would be fruitful to spend our limited time and resources investigating old anecdotally reported outbreaks at this point. I just don't think they're relevant anymore. The people coming down with ME/CFS now are the issue.

The failure to identify a unique etiology of ME/CFS despite repeated attempts, the documentation of different triggers precipitating what we choose to characterize as the same illness, and the highly variable case presentation of that illness, all suggest that we are not dealing with a single illness. Rather than being a specific illness, should the name be considered a generic term akin to the term, “cancer”? -

Agreed but I think that SEID is a generic term.

 

[JennyJenny]

I am for the criteria as it does not have a psychiatric component and will allow you to have other illnesses explaining symptoms and not STOPPING because there is an illness that can explain the symptoms. As if we don't have 3, 4 or 5 other conditions in the real medical world. And we can get 1.7 million of the undiagnosed in the US diagnosed and that means validation for them as well as possibly getting the correct health care support in the hopefully near future.

Exactly, SEID is generic just like breast cancer is generic. There are 10 types of breast cancer with different causations.

There isn't very much explanation for gender disparity in MS or Lupus either, it just is.

Now that we have biomarkers, I think we can say DISEASE. They knew it was and would probably be proven out soon so just took the brave leap. Good for them.

The new criteria is better than Fukuda in my opinion as I could have been diagnosed at age 17/18 with this newly proposed criteria instead of it taking decades to start coming down with comorbids and symptoms that would allow me to be diagnosed with CFS. I finally had the swollen lymph nodes and one or two other issues that allowed me to be diagnosed.

Give it time and we will have a nasty cluster to study. It will very likely be different causation as it very well may have been mold in Lake Tahoe but some virus in LA and perhaps another in London. Hopefully the money will be there to study the patients immediately and then follow for 10 years.

Sorry, my responses are not in the order of your article. Too tired to bother with that.

Thanks for the Forum!

 

[Cort]

Thanks Jenny. I like the sound of disease - that's for sure. It's so much more significant sounding than disorder.