US: Infection-Associated Chronic Conditions Patient Advocacy Coalition (IACCPAC) national webinar, October 24, 2023 at 12pm ET / 9am PT

Andy

Andy

Retired committee member
From an email I've received.

We’re pleased to invite you to the Infection-Associated Chronic Conditions Patient Advocacy Coalition (IACCPAC) national webinar, a part of the IACCPAC Initiative, led by The Long Covid Alliance, Solve ME/CFS Initiative, COVID-19 Longhauler Advocacy Project, Dysautonomia International, and Patient-Led Research Collaborative, with support from the CDC Foundation through the Infection Initiated Chronic Conditions Understanding and Engagement (ICUE) program.

We have previously brought together patient advocacy groups and community-based organizations working on infection-associated chronic conditions to begin discussions regarding common objectives among attending organizations and identify IACC community needs that might benefit from collaboration across organizations.

During our webinar, we’ll present findings from our workshop sessions and identify a roadmap that we hope will strengthen support for individuals experiencing IACC through strategic collaboration.

Please join us on

October 24, 2023 at 12pm ET / 9am PT

Registration link: https://bit.ly/IACCPACWebinar
 
While it's great to sorta admit there are long-term intractable problems with some infections, and it's great to unite infection sufferers under a kind of support group/banner, and yes, there's power in numbers - I still cannot help feeling "one step forward, two steps back".

How'd direct CDC and NIH attention in Lyme work out? Babesiosis? Long-Covid? ME/CFS? In each individually over what for some has been decades?

Why should anyone think that lumping them together suddenly will generate success? Putting all the undesirables in a single community? Is this being kind and attentive and genuinely seeking out answers and cures, or is it skid-row medicine re-branded?

Hard not to be cynical. One can only hope for the best.
 
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