Oct. 24th 2023 Webinar: Infection Associated Chronic Conditions - Patient Advocacy Coalition Initiative - IACCPAC

[Redtruck99]

Oct 24, 2023, 12pm ET / 9am PT Nationwide Webinar

Witness the power of community on Tuesday, October 24 at 12pm ET / 9am PT as the IACC- Patient Advocacy Coalition (#IACCPAC) Initiative team presents findings from a new report about the needs and priorities of the infection-associated chronic conditions community.

The Infection-Associated Chronic Conditions Patient Advocacy Coalition (#IACCPAC) is excited to present our findings and recommendations to strengthen support for people living with infection-associated chronic conditions through strategic collaborations. Our national webinar - led by The Long Covid Alliance, Solve ME/CFS Initiative, COVID-19 Longhauler Advocacy Project, Dysautonomia International, and Patient-Led Research Collaborative, along with support from the CDC Foundation.

Register here: https://us06web.zoom.us/webinar/register/WN_WtuiDzWpRj2VzFBKEiTILQ#/registration
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[Redtruck99]

Phoenixrising members are experts on this so hope some of you can get involved.
Long Covid and other Infection Associated Chronic Conditions (ME/CFS, Long Lyme, Multiple Sclerosis, and more) can be triggered or driven by chronic pathogens (Covid-19, EBV CMV VZV HSV1,2 HHV6,7,8 Lyme).
Did I miss any?

There are little to no treatment options.
This needs legislation and funding to find solutions!
If we all join together we can make faster progress!
The long Covid Alliance endorsed petitions and other calls-to-action > here.

I am a member or Solving MS and we have suggested the IACCPAC review the clinical trials we are tracking. There are 14 trials for #EBVcausesMS, but the same therapies may work for EBV in other conditions.
Several of the therapeutics are also in trials for Covid-19.
https://solvingms.org/research-database

 

[Osaca]

I am a member or Solving MS and we have suggested the IACCPAC review the clinical trials we are tracking. There are 14 trials for #EBVcausesMS, but the same therapies may work for EBV in other conditions.
Several of the therapeutics are also in trials for Covid-19.
https://solvingms.org/research-database

Hey, @Redtruck99 I just saw that the extremely dissapointing preliminary data for ATA188 https://investors.atarabio.com/news...apeutics-announces-primary-analysis-data-from (also discussed here https://gavingiovannoni.substack.com/p/atara-bios-embold-study-is-negative), this could possibly turn on the breaks on EBV trials. I suspect it'll also have a negative impact for any pharma company that would even remotely consider ding something about a possibly EBV and ME/CFS patients. Knowing that EBV could somehow be implicated is unfortunatley still very far from knowing what exact role it plays. I fear with these negative results many MS patients won't see the end of that discussion...

Very dissapointing and saddening news for MS patients (and even ME/CFS patients). A positive signal could have done so much...

https://twitter.com/i/web/status/1722531842463522821

 

[Violeta]

Manuel Ruiz, @Manuel, has some interesting material that you might be interested in.

https://forums.phoenixrising.me/thr...-cfs-and-long-covid.88252/page-2#post-2409974

He also has information on X (Twitter).

https://x.com/manruipa/status/1622974865388052482?s=20