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Long Term Caregiver

@ultracaregiving.bsky.social
89 followers 241 following 78 posts

Running an ultramarathon of caregiving for too many years to count and the foreseeable future.

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Reposted by Long Term Caregiver
Al Haddrell @ukhadds.bsky.social · 09/08/2025
CO2 monitors have become popular tools people can use to estimate their indoor air quality. A new study was recently published that looks into how we can use them to optimise occupancy thresholds and identify problem locations. Actual practical science!!! A thread
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Robbie Schneider @robbieschneider.bsky.social · 24/06/2025
Starting a 🧵 of things not to say to a family in crisis. Feel free to chime in: - All the rain is what makes the flowers bloom. - Say ( ) prayer. (Pick whatever combo.) - You're like Job. - You need an exorcism on your house. (Seriously!)
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Dr. Heather Hinam 🍁 🇨🇦 @secondnaturemb.bsky.social · 13/06/2025
Everything is a lot these days and I know I’m very lucky to live in a place in a situation that is relatively calm right now. So how about you come kayak along Lake Winnipeg with me? Hopefully it brings a little peace to your day. 1/ 🌿
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ThereForME @thereforme.bsky.social · 10/06/2025
Today’s #ThereForME blog is from our very own @oonaghcousins.bsky.social! Oonagh explores the importance of understanding rest, comparing her experiences as an athlete to those as a patient. Link in next post 👇
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Mary Fernando M.D. 🇨🇦 @maryfernando.bsky.social · 08/06/2025
Better late than never. We’ve asked why we are still doing routine measles immunizations when we’re in an outbreak. Now, the guidance appears to have changed (though the date thing is confusing) 2nd doses for those who have only had one measles vaccine. Routine: Outbreak:
Routine: 

Adults of any age who have had only one dose of MMR may receive a second dose if they are:
• Health care workers
• Post-secondary students
OR based on a health care provider's clinical judgement vaccine as soon as possible**
A second dose of MMR is recommended for all adults born in or after 1970 (for those who have not previously received 2
doses of MMR)
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Jeff Gilchrist @jeffgilchrist.bsky.social · 05/06/2025
School Indoor Air Quality Basics. "Easy-to-understand resources are designed for school staff and decision-makers without a technical background, helping them make informed choices about indoor air quality." Direct link to fact sheets ( www.ashrae.org/file%20libra... ). #school #iaq #airquality
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Dr. Heather Hinam 🍁 🇨🇦 @secondnaturemb.bsky.social · 30/05/2025
I'm 5'1" on a good day so getting my kayak on the roof of my car by myself can be a challenge. My friend lent me this roller that suctions to your window and it helps so much. That combined a with a folding stool that I keep in my car, and I'm good to go all by my short self :)
Close-up of a suction-cup roller bar attached to the back window of a blue Toyota Matrix. A blue Dagger kayak sits on top. A blue Dagger kayak sits on a roller bar suctioned to the back window of a dirty blue Toyota Matrix. They sit in the front yard of a green cottage in the woods.
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Patient-Led Research Collaborative @patientled.bsky.social · 22/05/2025
Grateful to @putrinolab.bsky.social and the clinicians, researchers, & PLRC members who authored this response piece in the BMJ yesterday. There are countless biological findings in severe ME, and people with severe ME need to be treated with effective therapies! #pwME www.bmj.com/content/389/...
bmj.com
Patients with severe ME/CFS need hope in the form of evidence-based interventions, not opinions.
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Josephine Robertson @josephinerobertson.com · 16/05/2025
Hey fellow therapist & MH peeps. Anyone have a curriculum for a caregiver (esp stroke caregiver) support group they'd be willing to share with a student (me)? I'm putting together a support group for stroke caregivers specifically and while I have ideas I'd love advice from others!
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Putrino Lab @putrinolab.bsky.social · 15/05/2025
by the patient community. For the longest time, patients have told us that CBT and GET cause harm. We finally have hard physiologic data to support this and yet idealogues are allowed to freely publish OPINION about #MECFS and other energy-limiting diseases in @bmj_latest. To 4/
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Denise Brown @caregiving.bsky.social · 02/04/2025
Help and support automatically should be there for us, side by side with support for our carees. We also need to define caregiving as an emotional experience rather than one about tasks and chores. It's how we feel that takes a toll. /4
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Denise Brown @caregiving.bsky.social · 02/04/2025
A few thoughts on this beautifully-written piece by @mcgowankat.bsky.social We deserve help during difficult times. Receiving help and support shouldn't depend on what we call ourselves. www.npr.org/2025/04/01/n... /1 #caregiving
npr.org
Caregiving can test you, body and soul. It can also unlock a new sense of self
Helping a sick family member over months or years can be an enormous strain. It can also disrupt your identity. Psychologists say embracing this change can open up new ways for caregivers to cope.
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Canadian Covid Society @covidsociety.ca · 21/03/2025
Le Musée de Vancouver prépare une exposition captivante visant à faire découvrir au public la réalité de la vie avec la covid longue. 1/3
Image contenant les détails d’un appel de propositions pour un projet de sensibilisation à la covid longue. L’image comprend des exemples de photos tels que des médicaments et des suppléments, une alerte de fréquence cardiaque sur une montre intelligente, un rendez-vous médical et des fleurs sous un rayon de soleil. Au bas de l’image figurent les logos des organismes organisateurs : l'Université Simon-Fraser, le OH-HI Science CoLab, le Musée de Vancouver, le réseau interdisciplinaire de soins cliniques post-COVID-19 de la Provincial Health Services Authority et l'agence de recherche Michael Smith Health Research BC. Le texte sur l'image se lit comme suit :

Votre vie, vos photos, votre histoire

Une journée dans la vie d’une personne atteinte de la covid longue

Partagez votre expérience de personne vivant avec la covid longue dans le cadre d'une exposition au Musée de Vancouver!

« Une journée dans la vie d’une personne atteinte de la covid longue » est un projet photographique qui met en lumière le quotidien des personnes touchées afin de donner une visibilité accrue à cette réalité, de réduire la stigmatisation et de plaider pour un meilleur soutien.
Que vous ayez reçu un diagnostic de covid longue ou que vous viviez avec des symptômes persistants après une infection à la covid-19, nous vous invitons à partager jusqu'à six photos de votre quotidien. Elles seront exposées au Musée de Vancouver à l’automne 2025.

Vous pouvez soumettre vos photos jusqu’au 30 avril 2025.
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Canadian Covid Society @covidsociety.ca · 21/03/2025
The Museum of Vancouver is planning an intriguing exhibition to show people what it’s like to live with long Covid. Longhaulers from across Canada are invited to share up to six pictures and captions, showing people what it’s like to live a day in your life. 1/2
Graphic with details of a call for submissions for a long Covid awareness project. The graphic includes examples of photos: medications and supplements; heart rate alert on a smartwatch; health care appointment; and flowers in a ray of sunshine. At the bottom of the image are logos of organizers: Simon Fraser University, OH-HI Science CoLab, Museum of Vancouver, PHSA’s Post-COVID-19 Interdisciplinary Clinical Care Network, and Michael Smith Health Research BC. 

Text on the graphic reads as follows:

Your Life, Your Photos, Your Story

A Day in the Life of a Longhauler

Share your Long Covid Story at the Museum of Vancouver!

"A Day in the Life of a Longhauler" is a photography project that captures the daily life of individuals living with Long COVID to enhance visibility, reduce stigma & advocate for improved support.
Whether you have a Long COVID diagnosis or are dealing with long-term symptoms following a COVID-19 infection, we invite you to share up to six photos from your everyday life which will be showcased at the Museum of Vancouver In the Fall of 2025.

Photo Submissions will remain open until April 30, 2025.
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Jennifer Baumbusch @geronursing.bsky.social · 20/03/2025
NEW PUB (open access): Weathering the Storm: Climate-Related Weather Event Experiences of Families of Children With Medical Complexity #ClimateChange #ClimateImpacts onlinelibrary.wiley.com/doi/full/10....
onlinelibrary.wiley.com
Weathering the Storm: Climate‐Related Weather Event Experiences of Families of Children With Medical Complexity
Background Climate change is increasingly an urgent concern because of the catastrophic and irreversible impacts on the planet and society as a whole. In recent years, there have also been more freq...
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Jennifer Baumbusch @geronursing.bsky.social · 17/03/2025
The other day my husband got the "you should really go on vacation" line from our GP. This is one of the worst things you can say to a caregiver. This is not support. This is just making a person feel worse about a situation over which they have little control. Please don't reply with suggestions.
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Long Term Caregiver @ultracaregiving.bsky.social · 01/03/2025
My robot vacuum isn’t perfect, but it saves me an hour or two a week. It’s one of the few ways I’ve “found” more time. If you’re supporting a friend who is #Caregiving, this could be a useful gift, especially if you’re not in the same location and want to help.
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Kate Violette @kateviolette.com · 01/03/2025
And people with ME/CFS, and people with Lyme, and and... If "think yourself better" worked for *any* biological illness, we'd know about it and would all be taking advantage of it. Try telling someone with MS or cancer to "think themselves better" and notice how ridiculous you sound.
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David Fisman. @dfisman.bsky.social · 28/02/2025
TLDR: Cleaning indoor air reduces the effective reproduction number of communicable diseases. Lower reproduction number = lower critical fraction to vaccinate (Pc = 1-1/R).
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André Picard @picardonhealth @picardonhealth.bsky.social · 18/02/2025
Canada needs a plan to help struggling caregivers. Without this army of helping hands, the country’s health and welfare systems would be collapsing even faster, by @picardonhealth.bsky.social www.theglobeandmail.com/opinion/arti... via @theglobeandmail.com @cdncaregiving.bsky.social
theglobeandmail.com
Opinion: Canada needs a plan to help struggling caregivers
Without our army of silent, unpaid helpers, our health and social welfare systems would be collapsing even faster
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Jennifer Baumbusch @geronursing.bsky.social · 27/02/2025
I had someone decline to participate in a qualitative study using interviews because they don't want their recorded voice to be stolen by AI. Anyone else experience this? It's a first for me. #QualitativeResearch
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Centre for Global Social Policy @cgsp-cpsm.bsky.social · 25/02/2025
Experts say people with disabilities are often left behind during evacuation and recovery efforts, and that as climate change amplifies the frequency and scale of natural disasters, the discrepancies are becoming more serious. #CareAndClimate #CareEconomies www.nbcnews.com/data-graphic...
nbcnews.com
Disability amid disaster: People with disabilities are disproportionately impacted by natural disasters
After disasters, people with disabilities are more likely to be displaced, more likely to never return home and more likely to receive scam offers, Census Bureau data shows.
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Charlie Park @givesnospoons.bsky.social · 31/01/2025
A reminder that it's ok for Support Workers to: 1) Work remotely/offsite. 2) Go out alone on errands. 3) Work alone while we work, rest, play or go out. 4) Work with us only when needed. Not all disabled adults need supervision, training or companionship. Social stimulation can be counter-helpful.
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Al Haddrell @ukhadds.bsky.social · 19/02/2025
This is neat! My video on how to use a CO2 monitor to measure ventilation has been reviewed by a YouTube channel dedicated to home performance. It's really good, and they bring up a few points I missed. Check it out: www.youtube.com/watch?v=Uzce...
youtube.com
DIY Test for Home Ventilation: Simple CO2 Tracking Process by Al Haddrell
YouTube video by Home Performance
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Care, Tech, and Tips Podcast @caretechandtips.bsky.social · 12/02/2025
Assistive Access is a game changer for loved ones who need a more simple, more accessible version of Iphone with guardrails that give YOU a little more peace of mind.
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Kelly @broadwaybabyto.bsky.social · 14/02/2025
RFK Jr seems intent on erasing chronic illness with “wellness activities”… Remember that healthy living can’t make you bulletproof & the wellness movement is often toxic & dangerous Before I became disabled I was big into holistic health. The community turned on me the moment I didn’t “heal myself”
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Katy B @katybrc.bsky.social · 14/02/2025
#ValentinesDay can feel like one of the toughest days for #pwME #ME takes a huge toll of the lives of those who are close to us, some relationships don't survive this, for many other #pwME there's no possibility of a relationship Sending love to all your courageous hearts💖
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WHO @who.int · 11/02/2025
Dr Menattallah Elserafy is known for her research on using yeast to study DNA damage-related diseases. She advises women to dream big, emphasizing that their unique qualities can make them leaders in scientific research. 🔬 #WomenInScience
Science doesn't only satisfy my curiosity, but also represents a hope of change.
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WHO @who.int · 11/02/2025
It is International Day of Women and Girls in Science. Gagandeep Kang’s research on enteric infections has contributed to the rotavirus vaccine rollout in #India, protecting millions of children and shaping a healthier future. for all. 🔬 #WomenInScience #WomenInSTEM
When you have women leaders in science, they think about problems differently.
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WHO @who.int · 11/02/2025
"I have a message for the next generation. They have to do something that they enjoy. If they like to solve puzzles, science is for them." Katalin Karikó’s journey in #mRNA research shows that persistence and belief in one’s work can change the world. 🔬 #WomenInScience
Women are important for science and science needs more women
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Long Term Caregiver @ultracaregiving.bsky.social · 10/02/2025
“Many were frustrated and stressed from having to constantly accommodate the system and its requirements.” This quote from the paper feels familiar. Other #caregivers may also appreciate feeling seen by reading the (pseudonymous) stories of navigating home care supports.
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The Canadian Anti-Stalking Association (CASA) @antistalkingcanada.bsky.social · 06/02/2025
Language matters! The way people throw around the word "stalking" makes it difficult for survivors to be believed because "Hey, haven't we all done a little light stalking in our day?!" + your ex is allowed to move on! They, and their future partners, don't deserve harassment as a result.
Image of a text exchange between two friends.

First friend : So Tanya told me my ex has a new gf...
Second friend: OMG! Already?!
First friend: Right?! Ugh. You free tonight? We should grab drinks and stalk her socials!
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Long Term Caregiver @ultracaregiving.bsky.social · 06/02/2025
Handled stressful matters for my loved one today. Instead of running back, I was reminded to build an hour of time into my leave request for my own self care. It meant I wasn’t completely burnt out when it came to the end of the day. Supporting #caregivers in the workplace makes such a difference!
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Centre for Global Social Policy @cgsp-cpsm.bsky.social · 29/01/2025
Great new #TimeUse #DataVisualization tool from Statistics Canada, which includes "unpaid #Care" as an activity group. www150.statcan.gc.ca/n1/pub/71-60...
A screenshot of StatCan's new Time Use data visualization tool. Users have the option to filter by type of day (weekdays, weekends or both), as well as by gender and age. Users can toggle between tempograms and data table. Users can also filter by "activity groups." The visualization captured in the screenshot says "percentage of participants in various activities, by time of day: total, weekdays and weekends" and is filtered by "unpaid care activities" as an activity group. The tempogram being displayed shows peaks in unpaid care around 7am and 7pm.
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Centre for Global Social Policy @cgsp-cpsm.bsky.social · 05/02/2025
Great piece about policy and advocacy efforts to demand a National #Caregiving Strategy, featuring insights from CGSP director Ito Peng and #CareEconomies in Context project partner CCCE.
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Timothy McBride @mcbridetd.bsky.social · 04/02/2025
NIH must address the twin crises of long Covid and ME/CFS — together www.statnews.com/2025/02/04/r... via @statnews.com
statnews.com
NIH must address the twin crises of long Covid and ME/CFS — together
NIH has an historic opportunity to transform post-viral illness research by bringing ME/CFS into its long Covid RECOVER Initiative.
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Still COVIDing Canada @stillcovidingca.bsky.social · 03/02/2025
Would you like to avoid buying respirators made in the United States? We have options. Check out the StillCOVIDing.ca site for lists of respirators made in 🍁 Canada and the 🇪🇺 European Union. stillcoviding.ca/en/resources... #CovidIsntOver #LaPandemieNEstPasFinie
stillcoviding.ca
Masks / respirators
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Still COVIDing Canada @stillcovidingca.bsky.social · 03/02/2025
Vous voulez éviter d’acheter des respirateurs fabriqués aux États-Unis ? Nous avons des options. Consultez le site StillCOVIDing.ca pour obtenir des listes de respirateurs fabriqués au 🍁 Canada et dans 🇪🇺 l’Union européenne. stillcoviding.ca/fr/ressource... #CovidIsntOver #LaPandemieNEstPasFinie
stillcoviding.ca
Masques / respirateurs
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Tara Moriarty @moriartylab.bsky.social · 03/02/2025
Prévisions de COVID pour le Canada : FÉV 1-14, 2025 GRAVE : ON TRÈS ÉLEVÉ : CAN, AB, MB, Nord, QC ÉLEVÉ : CB, NB, TNL, NÉ, ÎPÉ, SK MODÉRÉ : aucun Environ 1 personne sur 42 est actuellement infectée au Canada.
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Tara Moriarty @moriartylab.bsky.social · 03/02/2025
Canadian COVID Forecast: Feb 1-14, 2025 SEVERE: ON VERY HIGH: CAN, AB, MB, North, QC HIGH: BC, NB, NL, NS, PEI, SK MODERATE: none About 1 in 42 people in Canada are CURRENTLY infected.
This image shows gauges with the Feb 1-14, 2025 COVID Forecast scores for Canada, the provinces, & territories. From left to right:VQ5RF

Canada: 12.7 - VERY HIGH
Alberta: 10.3 - VERY HIGH
British Columbia: 8.5 - HIGH
Manitoba: 10.0 - VERY HIGH
New Brunswick: 8.4 - HIGH
Newfoundland and Labrador: 8.3 - HIGH
North: 10.9 - VERY HIGH
Nova Scotia: 9.1 - HIGH
Ontario: 16.4 - SEVERE
Prince Edward Island: 9.3 - HIGH
Quebec: 12.7 - VERY HIGH
Saskatchewan: 9.9 - HIGH

A text box reads: "The COVID Forecast is calculated from 3 equally weighted categories: 1) Current infections and spread; 2) Healthcare system impact; 3) Mortality. Within each category there is one sub-category for trends over the most recent week (Trends) and one sub-category for current parameter values relative to a specified baseline (Current values). Trends and current values are weighted equally when determining the final score for a category. All Forecast input data and sources are available here (https://datastudio.google.com/embed/u/0/reporting/42b886cf-d661-488e-b7d8-5c5836b55ab6/page/p_2yqs028mwc). Past Forecast scores are available in the table below. Forecast scores are grouped into 4 ranges: MODERATE (1 to <5, white), HIGH (6 to <10, yellow), VERY HIGH (10 to <15, orange), SEVERE (>15 red)."
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Al Haddrell @ukhadds.bsky.social · 02/02/2025
This study made some waves on social media yesterday. It purports to show that CO2 concentration doesn’t correlate with covid transmission. Let’s talk about this, I have some thoughts. www.sciencedirect.com/science/arti...
sciencedirect.com
CO2 levels and SARS-CoV-2 transmission in public schools: A retrospective cohort study in Montreal (Canada)
Scientific evidence suggests that SARS-CoV-2 is transmitted primarily through close contact with susceptible individuals and that the risk of transmis…
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Tara Moriarty @moriartylab.bsky.social · 01/02/2025
DYK? Since July 2022, the lag between COVID-19 symptom onset and a positive PCR test is 4.5-6.5 days. You might test positive earlier than 5 days after symptom onset, but it can be up to one week. That's PCR--with RATs you're even less likely to test positive within the first 5 days of symptoms.
Screenshot from Ward et al 2024 Supplementary Figure 5 showing the average time between COVID-19 symptom onset and a positive PCR test in the United Kingdom up to March 2023.

The lag between symptom onset and the first positive PCR test increased to 4.5 to 6.5 days after July of 2022.
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Long Term Caregiver @ultracaregiving.bsky.social · 30/01/2025
#IndoorAirQuality and #CovidConscious teams … what do I need to consider before moving a loved one into a multi-unit residence with an HVAC system that has an energy recovery unit with a MERV 15 filter for each unit? (I think it might draw from a shared supply of heated/cooled air.)
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Julie S. Lalonde @julieslalonde.bsky.social · 30/01/2025
American influences in Canada abound but the "You must register to vote!" one isn't talked about enough and the misinformation is a problem. I've voted in every election since I was 18 & never been on the registry because of my stalker. It's FINE. It still takes me less than 5 mins to vote!
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Long Term Caregiver @ultracaregiving.bsky.social · 30/01/2025
#IndoorAirQuality and #CovidConscious teams … what do I need to consider before moving a loved one into a multi-unit residence with an HVAC system that has an energy recovery unit with a MERV 15 filter for each unit? (I think it might draw from a shared supply of heated/cooled air.)
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Mary Fernando M.D. 🇨🇦 @maryfernando.bsky.social · 30/01/2025
3/ If you only received one vaccine (everyone prior to 1970 did) you can take this article and, regardless of your titres, ask for a measles booster. I did. Also, many thanks to @deonandan.bsky.social and @kidsdoc1.bsky.social for your excellent and timely info on measles.
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Shematologist, MD @shematologist.medsky.social · 29/01/2025
Just your regular reminder that iron deficiency is super common especially in those who menstruate and it matters even if you aren’t anemic. jamanetwork.com/journals/jam...
jamanetwork.com
Prevalence of Iron Deficiency and Iron-Deficiency Anemia in US Females Aged 12-21 Years, 2003-2020
This study examines prevalence of iron deficiency among females aged 12 to 21 years to inform future screening strategies for iron deficiency and iron-deficiency anemia.
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