IOM report update

[cassava7]

The summary of the IOM report reads (p. 10, bolding mine):

It is encouraging to note that progress already is being made in understanding the etiology, natural history, pathophysiology, and effective treatment of ME/CFS using a variety of physiological and molecular methods. Several large cohort studies are now under way. The committee expects that this research will lead to findings that can be used to further refine the diagnosis of this disorder and the elaboration of clinically pertinent sub-types. As a result, the committee calls for a reevaluation of the evidence in no more than 5 years using the methods recommended in the IOM report Clinical Practice Guidelines We Can Trust (IOM, 2011).
​

Although it can be said that the committee's expectations have not been met, the delay of 5 years has already passed (the report having been published in 2015).

Do we know if any of the US advocacy organizations -- Solve ME, the US ME/CFS Clinicians Coalition, perhaps OMF -- has approached the NAM in this regard, or if the NAM itself has expressed its intention to update the report?

@Medfeb

ETA: Ellen Wright Clayton, who chaired the IOM committee for the ME/CFS report, remains an elected member of the NAM.

 

[Medfeb]

I could be wrong but I assume that NAM would need to be commissioned (paid) to do an updated review. The previous review was commissioned by HHS agencies - I'd have to dig it up to confirm but I think it cost $1M

 

[Denise]

I could be wrong but I assume that NAM would need to be commissioned (paid) to do an updated review. The previous review was commissioned by HHS agencies - I'd have to dig it up to confirm but I think it cost $1M

Like you, I believe the original report was about $1M. I don't know what NAM reports cost now. And I agree that they would likely have to be commissioned to do another report.
(Just as there was little new for the CDC Evidence Review, there's likely not enough new to warrant another IOM(NAM) except for the urgency we all face re ME and the dearth of help for PwME. Given that urgency, perhaps money for a new IOM/NAM report (IF there is $ for one) could be spent in other ways.)

 

[rvallee]

If I remember correctly, the IOM report happened because of the HHS advisory committee that was disbanded somewhere around, what, 2018?, for having served its purpose (of not doing anything, I guess).

So without that advisory committee, there is probably no mechanism to make people do their job when they don't want to. Or even anyone to raise the issue. If it were raised during a community call, I assume we'd just be told they'd look into it. Then don't. Which could be asked again, and probably be told in reply, I don't know, maybe a sing-along?

One of the recommendations made by long haulers to a White House task force was to form such a committee.

But really rules, requirements, laws, oaths, duties, those are all just meaningless words unless someone with the necessary power actually wants to act on them. Society is a contract based on honor, it's very hard to enforce anything when people badly don't have to do their job because neither they nor their managers care about an issue.

 

[Milo]

As a result, the committee calls for a reevaluation of the evidence in no more than 5 years using the methods recommended in the IOM report Clinical Practice Guidelines We Can Trust (IOM, 2011)

i believe you meant IOM 2015 and not 2011.

 

[DokaGirl]

@Medfeb @Denise

Yes, I recall the funding was $1million. I believe there were many volunteer hours involved as well.

I don't know if NAM has a broad enough mandate to look at the general state of quality of life now for pwME. Nothing is significantly different from when NIH did it in a few years ago.

ETA: will try to find the link for that NIH document later.

ETA #2: NIH report re the state of affairs for pwME, quality of life, research gaps, recommendation for Oxford definition to be retired as it may cause harm etc.: https://prevention.nih.gov/sites/de.../programs/mecfs/ODP-P2P-MECFS-FinalReport.pdf