Telebriefing by Trans-NIH ME/CFS Working Group on March 7, 3-4 PM Eastern Time

[ahimsa]

I got some email today from the The Trans-NIH ME/CFS Working Group.

(I guess I signed up for their mailing list but had forgotten all about it)

===== start of mail =====
We request your participation in a telebriefing about updates on NIH’s efforts to advance research on ME/CFS. The telebriefing will be held on March 7, 2018, 3:00 until 4:00 pm ET. If you will be calling from the U.S., please use the following dial-in information for the telebriefing.

Dial-in: 866-844-9416
Participant passcode: 4042892

If you will be calling from another country, please see the attached chart for your country’s access information.

Please remember to register at NIHME-CFSWorkingG@ninds.nih.gov if you plan to participate in the call.

Thank you in advance for your participation and we look forward to an engaging, thoughtful and productive conversation.

Regards,

The Trans-NIH ME/CFS Working Group
===== end of mail ========

There was an attached file (MS Word format, .docx) with phone numbers which I have converted to a PDF file and uploaded. For some reason I had trouble uploading the original file.

 

[Milo]

Reminder that this telebriefing is today! Check out your time zone.

 

[Sasha]

Do they post recordings of these things later?

 

[Sasha]

A little bump for this - I think it's on in 30 minutes. Anyone going to listen?

 

[Alvin]

missed it

 

[Sasha]

I listened but don't recall anything especially earth-shattering (but I have the concentration of a pingpong ball).

 

[Webdog]

Made it through about 45 minutes before my brain gave out. Lipkin emphasized he thinks this is many many diseases, making an analogy with cancer.

One of these days, the NIH will stop calling it "chronic fatigue".

 

[Milo]

Lipkin said there is a paper in the work, that he couldn’t discuss its content otherwise he wouldn’t be able to publish it.

 

[Forbin]

Are calls like this recorded and archived by the NIH? I seem to recall hearing one that way, but I may be mistaken.


ETA:

I answered my own question. It looks like a transcript and recording will eventually be posted at the link below. I'm not sure how long it takes, though it looks like it took a couple of weeks last time.
https://www.nih.gov/mecfs/events
https://www.nih.gov/mecfs/events

 

[Andy]

Video and transcript available here, https://www.nih.gov/research-traini...ves/mecfs/nih-me/cfs-advocacy-call-march-2018

 

[Forbin]

In the teleconference, Dr. Lipkin said this:

[From the NIH transcript]

We have now done two projects with the Fiehn group [at UC Davis]: one on plasma using materials from the Chronic Fatigue Initiative supported by the Hutchins Family Foundation and the other is a set of spinal fluids that we analyzed in collaboration with Dan Peterson in Incline Village. And I will tell you that this is tantalizing and unfortunately not very satisfactory for you. But and I wish it were different, but I can't present the data because if I do that then it will never get published. That's just the way these things go. But I'm hopeful that they'll be out there soon.

If there were something that would immediately impact the community in a profound way, in such a way that it would change treatment and so forth, I would break that embargo. But given that it doesn't meet that bar, I can't. But I think you will find that we are able to confirm some of the findings that came out of UC San Diego, but we have differences too. And things that I think extend that work, change it a bit and suggest certain treatment modalities that might be helpful.

By "the findings that came out of UC San Diego" I assume he's referring to Dr. Naviaux's metabolomics study that resulted in this paper in 2016. Metabolic features of chronic fatigue syndrome