Double Speak and Betrayal from Within

[Nielk]

On May 17, 2018, I wrote a blog about the actions by the organizations MEAction, Solve ME/CFS, and MassCFIDS to introduce a Senate resolution ( S.Res.508 – dated May 15, 2018) for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) International Awareness Day. ME advocates and the organization MEadvocacy strongly objected to the deceitful inclusion, by the organizations mentioned above, of the Institute of Medicine (IOM) recommendations into the Senate Resolution.

The three organizations purportedly representing the ME community are keenly aware that a significant segment of the Myalgic Encephalomyelitis (ME) community strongly disapprove of the IOM recommendations (see details of HHS’ charge to IOM and the resulting recommendations here) yet, chose to inject the IOM recommendations in the Senate Resolution.

In response to multiple objections in June 2018, the three organizations published a clarifying letter to the community about the “confusion” regarding the language in the Senate Resolution. In their letter, they claim that “one line was inadvertently changed” which became a cause of “confusion and upset” in the community.

- Read rest of blog here

 

[alex3619]

I have argued the IOM report was flawed from before it started and was in planning, as its far too premature to use an evidence based approach on an area of research that has always been massively underfunded with almost no replication of results. Its useful politically, but we have to be very cautious about making scientific claims based on it.

It is correct to say the ICC is the most recent scientific diagnostic criteria we have, though CCC is currently more widely in use. SEID is a clinical criteria, and was never designed as a research criteria. I do not support the use of SEID in research criteria, though its conceivable that with considerable changes during operationalisation it might be usable, but this would simply be making it more like ICC anyway, so why bother?

Now in a broad and deep investigational study, with deliberate inclusion of patients with comorbidities, massively funded, many patients with adequate numbers of males, and intensive bioinformatic analysis including clustering and other grouping approaches, then there is some use for more inclusive investigations ... but this will necessarily increase time and resource usage, and slow the process down. Why do that?

There is only one place for SEID in research, and that is in looking at comparing SEID to ICC and other definitions. Until that is done more fully we should not consider SEID to be a good research criteria, and it should only be accepted if the evidence in such studies how its a good choice. This needs to be carried out at the level of deep biochemistry, as simple inference of PEM/PENE is not sufficient to accurately diagnose PEM/PENE in a scientific setting. We need clear and easy to use post exertional biomarkers. This biomarker issue is not unique to SEID, every definition suffers from this.

I am not entirely against SEID as a clinical criteria though, but so far as I can see most doctors simply ignore criteria anyway, or go with the ones officially endorsed by their favourite medical guideline provider. We need multiple diagnostic tests as soon as possible. The ICC gets us there faster.