Dr. Collins wants to mend fences - my call with him

[BurnA]

Hi Simon - I'm not privy to all of the details, but here's what I've gleaned. Vicky Whittemore seems to 'get it' - she understands the difference between chronic fatigue the symptom and ME/CFS the illness. But her boss, NINDS director Koroshetz, apparently does not get it. Now, I'm getting this second-hand so I can't 100% vouch for it. Various advocates have over the past few months had meetings with those two and have pushed for, a) a formalized role for patients and advocates in NIH research planning, and b) CCC criteria for the NIH clinical study. Neither suggestion has been acted on by the NIH team. Yesterday I sent a note to Dr. Collins explaining that things are not going well and NIH has a lot of work to do to get the patient community on board with what they're doing.

That said, yesterday Julie Rehmeyer heard from an NIH press officer that the clinical study protocol was mistakenly posted early. I hope this means there is still room for the NIH team to do a better job of listening to us. If they end up sticking with the protocol that was posted (it was not "announced" by NIH as some suggested...no one at NIH alerted anyone to it), I don't think it will be the total disaster some fear. If they do the 2-day exercise test properly, the study will find two groups of people - a group with PEM and a group without PEM. We already know these two groups exist, so the NIH is kind of reinventing the wheel here. It wouldn't be the first time an NIH intramural study unnecessarily replicated work done by outside researchers. They have a habit of doing that.

Several people are talking with the NIH team this week and expressing some of these sentiments. I hope they listen.

Brian

Brian,
Its great to know you sent a note to Dr. Collins.

A minor thought on the following....

If they do the 2-day exercise test properly, the study will find two groups of people - a group with PEM and a group without PEM. We already know these two groups exist, so the NIH is kind of reinventing the wheel here. It wouldn't be the first time an NIH intramural study unnecessarily replicated work done by outside researchers. They have a habit of doing that.

I think we all hope they do it properly but its hard to know as they don't specifically talk about PEM anywhere that i have seen and they state the purpose of the test is to make people tired.
However perhaps more importantly, as Simon has pointed out ...

The main beef over Reeves, as brilliantly shown by Lenny Jason's work, is that it's too lax and brings in a majority of sick people who are non-mecfs cases by other definitions: I think it's something like 2.5% prevalence for Reeves vs 0.25%-0.45% for, say, Fukuda, as more realistic prevlance figures. Applying that to a sample of 40 patients, you might get 10 or fewer Fukuda-patients - and 30 or more non-Fukuda patients - making this study fatally flawed from the off.

Even if they do test for PEM, it may only occur in 1/4 ME/CFS patients if the use the Reeves definition. Meaning that its significance might be lost. (certainly if 3/4 don't have PEM)

Replicating work isn't an issue with me, i think all good work on ME/CFS counts and if it is replicated by the NIH i think it adds weight.

Thanks again.