aeforbes.bsky.social
noticing–wondering–learning–creating–critiquing–revising
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Have you seen this guide that was published by the Bateman Horne Center in May? There is a chapter on pediatric & young adults. The BHC has many great resources on their website.
batemanhornecenter.org/wp-content/u...
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You have been her champion every step of the way.
I can tell how extremely proud you are! ❤️
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Colin, I was introduced to you and Rosie last fall via “The Unravelling”.
Everytime you post about your lives, I am inspired.
You and Rosie continue to enlighten the world in so many ways.
I continue to marvel at what Rosie has accomplished!
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My response –
My eyes well with moisture
My facial expression saddens
My whole body feels defeated
I am honored to be let into your world
But it hurts
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Incoming storm on Saturday
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www.amsterdamumc.org/en/research/...
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What a lovely, brave sharing of yourself! ❤️
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I really like this statement -- "Trial-and-pivot over trial-and-error."
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How is Rosie doing after her strenuous advocacy outing?
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"the administration should adopt a “no regrets” policy"
Very well written. Thank you.
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“When I first got sick, I was like, OK, I just have to survive 3 to 5 years and I think there will be, at least, decent symptom management trial data so that we have options. But we’ve made almost no progress...it’s nowhere near the volume it should be given the burden of disease.”
2/3
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Thank you for your steadfast focus on the future!
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Thank you for your amazing work! ❤️
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Mine are made from kits www.cleanairkits.com
Also -- here are DIY instructions itsairborne.com/building-a-p...
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I have made several #crbox with computer fans. While more expensive initially, they are very quiet and energy efficient. I keep mine on continuously.
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Such beautiful young ladies! ❤️
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"In a world where confusion is a tool, clarity is the antidote," says @kkjetelina.bsky.social
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🥲
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You are a strong and caring leader! ❤️
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"Education on ME and post viral-illnesses (such as Long Covid) needs to be included in university medical courses for healthcare workers, so that newly qualified professionals are aware that these illnesses exist, are real and know how to identify them."
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Current page, "...modified to comply with President Trump's Executive Orders"
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Archived page
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Oops--I meant CDC, not NIH. And I did find the page again. It was just linked beyond the main page.
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NIH Vector Borne diseases page changed from last night to today. Any mention of climate change has been removed.
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How would you tweak these statements?
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Post exertional malaise with LC is a delayed onset occurrence that results in an overall symptom worsening after minimal exertion. Recovery from PEM is prolonged.
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Exercise intolerance with LC is an immediate response to exertion that results in reduced performance capabilities. Recovery may occur soon after exertion is discontinued.
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Fatigue with LC is a generalized and persistent reduction in energy. There is no recovery period. It is constant.
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My greatest fear is that the incoming administration will gather undocumented farmworkers into close quarters resulting in the unintended consequence of co-infections. Such an environment could be the catalyst that accelerates the reassortment of human & bird flu. Will public health weigh in?
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“We feel that this can no longer be summarily ignored simply because it does not fit an existing paradigm.”
Applies, as well, to PEM with POTS!
Quote source: “Infection-associated chronic conditions: Why Long Covid is our best chance to untangle Osler’s web” – Peluso, et. al.