International ME/CFS Conference to Focus on New Frontiers, Long COVID, Exercise Studies, Immune Exhaustion & More

Gingergrrl

Gingergrrl

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I couldn't find an existing thread on PR re: this upcoming conference which I learned about recently from this Health Rising Article:

https://www.healthrising.org/blog/2...covid-exercise-studies-metabolomics-and-more/

The conference will be virtual/online on Aug 19th to 21st, 2021 from 10:00 AM to 3:30 PM (Eastern Standard Time) each day. Registration is open from July 1, 2021 to Aug 18, 2021 and if you register by Aug 12, 2021, you will receive 25% off. There are a variety of registration options for both patients & professionals (and you can attend just one day or the entire conference).

I am planning to register for the first day (Aug 19th) which includes many excellent speakers including Dr. Peter Rowe, Dr. Larry Afrin, Dr. David Kaufman, Dr. Carmen Scheibenbogen, Dr. Blair Grubb, and many others (plus many excellent speakers on Aug 20th & 21st, too).

Here is the link to the conference to register and to see the schedule of guest speakers:
https://www.iacfsme.org/2021-iacfsme-virtual-conference/
 
Gingergrrl

Gingergrrl

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I wanted to bump this thread in case anyone missed it. I registered for the conference yesterday (for the single day registration just for Thurs August 19th at the early discounted rate).
 
Pyrrhus

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The conference begins this Thursday!

2021 IACFS/ME Virtual Scientific Conference​
August 19 - 21, 2021, 10:00 AM - 3:30 PM EDT​
To view the full conference schedule and registration fees, ​

MEAction said:
Some of the conference events include:
  • “Orthostatic Intolerance and CFS/ME,” Blair Grubb, MD (University of Toledo)
  • NIH Grant Writing Workshops led by Dr. Vicky Whittemore and Dr. Joseph Breen of the National Institutes of Health (NIH)
  • Virtual poster sessions
  • “ME/CFS and Long-COVID: Overlapping or Distinct Entities?”, Dr. Avindra Nath (NIH, NINDS) and a subsequent Q&A session
Click to expand...
 
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P

perrier

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Martin aka paused||M.E. said:
I watched the patient's talks yesterday... Jarred Younger presented the same results he talked about years ago at the OMF symposium. VanElzakker nothing new, Dr. Kaufman nothing new, the rest nothing new...

I don't know what to say. Hopefully today will be better with Chia & Co.
Click to expand...
What this says to me is that perhaps, we need fresh eyes to look at this crippling disease.

Secondly, conferences often frustrate me: many times I have seen presenters just repeating ( or slightly altering) what they offered the year before. This happens not just in medical research but in the humanities also.

But there seems to be a real problem with ME research, and I can't figure it out. Is it that there is no agreement? That folks are competitive? The quality of life of patients is horrific. Something has to put some fire, some urgency, under the seats of ME research. (There are of course a handful of researchers who work around the clock--)
 
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Martin aka paused||M.E.

Martin aka paused||M.E.

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Nothing shockingly surprising so far but one thing stood out for me: Dr. Nath says that we have to be very careful interpreting AAB that we find in LC/ME bc there are always lots of AAB in all neurological diseases and it's hard to figure out if they are responsible for any symptom...That is an interesting statement bc of the role of GPCR found in ME

Chia had 3/4 patients respond well to Remdesivir but wants to to placebo controlled studies.
 
Pyrrhus

Pyrrhus

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Martin aka paused||M.E. said:
Dr. Nath says that we have to be very careful interpreting AAB that we find in LC/ME bc there are always lots of AAB in all neurological diseases and it's hard to figure out if they are responsible for any symptom.
Click to expand...
That's a good point. And the longer the chronic inflammation has been going on, the more auto-antibodies you are likely to find. Some of those will worsen the inflammation and some may turn out be harmless...
 
Martin aka paused||M.E.

Martin aka paused||M.E.

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Pyrrhus said:
That's a good point. And the longer the chronic inflammation has been going on, the more auto-antibodies you are likely to find. Some of those will worsen the inflammation and some may turn out be harmless...
Click to expand...
Yeah right, that was a point I made earlier here on PR. And it resonates with what Prof Edwards said years ago regarding this Cell Trend tests and the poor outcome of Scheibenbogen's plasmapheresis (though she still presents it as a success)
 
Pyrrhus

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Martin aka paused||M.E. said:
Chia had 3/4 patients respond well to Remdesivir but wants to to placebo controlled studies.
Click to expand...
It's a long shot, but did he mention the dosage he was trialling?
The effective dosage for remdesivir varies widely depending upon the underlying virus.
Some RNA viruses do not respond to remdesivir even at very high doses.
 
Martin aka paused||M.E.

Martin aka paused||M.E.

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Pyrrhus said:
It's a long shot, but did he mention the dosage he was trialling?
The effective dosage for remdesivir varies widely depending upon the underlying virus.
Some RNA viruses do not respond to remdesivir even at very high doses.
Click to expand...
Initially 200mg, then 100mg daily X 4... He run through it and I had some difficulties to follow when he changes the dose
 
Pyrrhus

Pyrrhus

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Pyrrhus said:
That's a good point. And the longer the chronic inflammation has been going on, the more auto-antibodies you are likely to find. Some of those will worsen the inflammation and some may turn out be harmless...
Click to expand...
Martin aka paused||M.E. said:
Yeah right, that was a point I made earlier here on PR. And it resonates with what Prof Edwards said years ago regarding this Cell Trend tests and the poor outcome of Scheibenbogen's plasmapheresis (though she still presents it as a success)
Click to expand...
And for anyone wondering about how chronic inflammation can produce auto-antibodies, see:
https://forums.phoenixrising.me/thr...urnal-article-from-nature.85019/#post-2357577
 
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