Meighan Stone

Human rights at home & abroad ♿ Executive Director @LCCampaign. Past: President @MalalaFund, Senior Fellow @CFR_org, Fellow @Kennedy_School, @WFP & @ONECampaign

[Meighan Stone @meighanstone]

@robynasaldino The best thing you can do is keep fighting to get better Robyn 💙 I think of you a lot, we have to beat this. I know we can.

[Meighan Stone @meighanstone]

One of the worst emails I've ever received came today. My heart goes out to anyone else living with chronic illness or disability, who also was a caregiver to loved ones at end of life. Hospice was impossible & essential. I love you Mom. You fought so hard, you can rest now.

[Meighan Stone @meighanstone]

@sunsopeningband Thank you for your kindness. The PEM is so hard, crying and grieving seem to make it worse. I pray we all can work together & beat this.

[Meighan Stone @meighanstone]

@LittlestEngine This really resonates, thank you. I appreciate your understanding and kindness.

[Meighan Stone @meighanstone]

@TogetherWeMask All my gratitude to your team for your condolences. You really are such a caring, committed team of people. Thank you.

[Meighan Stone @meighanstone]

@tbirdtko I'm so sorry for your loss of your father last year. May his memory be a blessing. Thank you for your care and thoughtful words at such a challenging time.

[Meighan Stone @meighanstone]

@Sue04438732 I'm so sorry for the loss of your father. As you shared, navigating this while living with Long COVID has been nearly impossible, but trying to take it one day at a time. Thank you for your condolences and care.

[Meighan Stone @meighanstone]

@TMaritanoAquino Thank you so much Teresa for your kindness. I don't really have care for me, but I know so many of us living with chronic illness and disability face this too. We have to so often be caregivers when we need care. Your words here help 💙

[Meighan Stone @meighanstone]

@AnciraBecky Becky, I really appreciate your thoughtful words. I'm in terrible PEM & pain now, but I'd do it again. Sometimes impossible choices are all we have to choose from living with this. I couldn't bear to let illness steal this from me too. Thank you again.

[Meighan Stone @meighanstone]

@brailemom I greatly appreciate your kindness & vulnerability. I believe your parents would want you to know their great love for you & pray any residual sorrow may be released. You were enough, you are enough. May we all find some way to extend grace & care to ourselves too.

[Meighan Stone @meighanstone]

@emily_rj Emily, thank you so much for your kindness.

[Meighan Stone @meighanstone]

@KSPrior Oh Karen, thank you for sharing. The last night, I felt God say: pray down heaven to meet her. So I held her dying body, petted her hair, sponged water into her mouth. I sang the lullaby she sang to me when I was a child, because her mother sang it to her too. My hardest prayers.

[Meighan Stone @meighanstone]

@robynasaldino Thank you for your kindness, it means a great deal to me. PEM from acute loss & grief is very hard, all the more after overextending so far past baseline to help provide intensive, end-of-life care.

[Meighan Stone @meighanstone]

@robynasaldino You just have to make sure it's that specific 23-valent pneumococcal vaccine (and not another version, sound familiar), get your titers tested ideally before shot & then definitely about a month afterwards.

[Meighan Stone @meighanstone]

@robynasaldino Robyn, sending care to NYC 💙Just sharing friendly note if you've previously done Pneumovax 23 vaccine to then test titers for functional immune responses? Only note in case haven't tried yet for additional health evaluation & potential IVIG qualification, if getting anyway.

[Meighan Stone @meighanstone]

@royalhansen My teenage son was hospitalized most of August for treatment, so also adding your son & entire family to my daily prayers. May he recover from this challenge, believing for baseline & peace to return & increase, one moment, one day at a time.

[Meighan Stone @meighanstone]

@chiluvs1 It's helped make that case that the US military's own research actually shows #LongCOVID is measurably, negatively impacting service members & force readiness, with several significant studies over last few years.

[Meighan Stone @meighanstone]

@chiluvs1 I can't speak for others, but can share why I've been working on it: disappointment since Biden with NIH research delays / portfolio / targets / process / progress & we need more than one way to fund LC research so cuts or changes at one agency/program don't stall overall efforts

[Meighan Stone @meighanstone]

@chiluvs1 FWIW, it would certainly be cause for uproar if it was going to any nonprofit or advocacy orgs--as this specific CDMRP/PRMRP funding must go towards concrete medical research that could have real "near term" impact & delivery for patients, not nonprofit organizations/activities.

[Meighan Stone @meighanstone]

@chiluvs1 Hi Chimére! I don't believe any Long COVID or MECFS orgs could receive any of this funding, as must go to research institutions to build mechanistic trials network & do the initial clinical trial itself. As the funding is from Defense budget, those rules very different than HHS.

[Meighan Stone @meighanstone]

@robynasaldino @chiluvs1 Thanks Robyn, just sharing this is accurate! Also some funds go to Navy researchers part of the trials network. No funding is perfect, but Defense approps/CDMRP rules mean for this LC grant, overhead capped, less bureaucracy, was less than a year from application to award etc.