Strawfie Challenge
@strawfie
A Selfie Campaign - Take a photo breathing through a straw, #strawfiechallenge Download campaign song: Breathe With Me by Betsa in aid of the CF Trust (UK)
Jeremy Corbyn took the #StrawfieChallenge and felt the struggle to breathe, faced by those with #cysticfibrosis Pls Watch: facebook.com/BBCSouthNews/v… for our story. We need #LifeSavingDrugs4CF on the NHS now. Our campaign song: youtube.com/watch?v=ZkfwV1…
This is upsetting. Nurseries are "stepping up cleaning" but ventilation & air filtration are not mentioned! We need impeccable indoor air quality to help control this. Measles is an AIRBORNE disease. It spreads quickly before the rash appears. h/t @CoastalK8 @JournoJess_
If you want to see respirators in healthcare settings, please provide your comments on CSA’s proposed standard BEFORE 19 Aug. publicreview.csa.ca/Home/View/2256… You don’t have to be Canadian to comment. Once a precedent is set for Canada, it will be easier to roll out in other countries.
The CSA has put forward a proposed standard and if this standard is adopted, respirators will be required in Canadian health care settings by default. Your feedback can help. publicreview.csa.ca/Home/View/2256…
For anyone wondering if Severe ME can kill people: yes it can and does. Many will be aware of the cases where pwME have died from malnutrition, but the disease can also lead to *early* death from all causes, with the top 3 being suicide, cardiovascular reasons & cancer ⬇️
patients are at a significantly increased risk of earlier all-cause (55.9 years vs 73.5) and cardiovascular-related (58.8 years vs 77.7) mortality, & had a lower mean age of death for suicide (41.3 years 47.4) & cancer (66.3 years vs 71.1) compared to the overall U.S. population
“We didn’t even see his eyes for over a year.” “It was like dealing with someone almost in a coma.” Clip from Channel 4 News: Nick Benton (@BentonNick18437) and his family on life with severe #MECFS — as the government finally releases its delivery plan.
Channel 4 News segment (5 mins) on the new government delivery plan for #MECFS. Interviews with Dr @BinitaKane, Sajid Javid and Nick Benton a patient and his family. youtu.be/1sYD5iBXw8k?si…
This write up from @Channel4News is worth a look - more on @BentonNick18437’s story, who has done such an awesome job speaking out 💪
ME Delivery Plan: will it make a difference? channel4.com/news/me-delive…
My daughter died from ME. This new plan fails her and others like her. thetimes.com/uk/healthcare/…
Clip Sarah Boothby on todays BBC Breakfast segment on the UK government's new #MECFS Delivery Plan “I was accused of fabricating Maeve’s symptoms right up to the point in which she died. Two days before she died, we were subject to safeguarding investigations.”
Clip of Dr @BinitaKane speaking on BBC Breakfast about the new #MECFS delivery plan. The plan changes nothing now. “There are no commissioned services, so clinicians can’t practice this medicine within it. That forces both doctors and patients into the private sector.”
Disabled, Covid-impacted artists to Eric Bogosian: ‘Are you letting us be erased in your name?’ Disabled artists publish open letter to Eric Bogosian, AMC, and call for transformative justice after second wave of suspected media suppression thecanary.co/global/world-a…
"clean air is a basic human right... that includes the air in our schools.."
Opening speech by @hans_kluge, Director @WHO_Europe, at the 2nd European Indoor Air Conference, held in the Senate in Paris: "Breathing clean air is a basic human right that includes the air in our schools." ▶️ platform.genevahealthforum.com/index.php/ghf-…
“Long Covid *may* have surpassed asthma as the most common chronic health condition in children” in 2025….lets let that sink in for a moment……we’ve had FIVE YEARS to put in public health measures to protect our kids like clean air in schools and we’ve STILL NOT DONE it…..1/
A new NIH RECOVER study followed hundreds of children under 6 and found that up to 15% met criteria for probable Long COVID—many with symptoms lasting over a year. Distinct symptom patterns were seen by age group. Poor appetite, chronic cough, sleep issues, and fatigue were…
Read our position statement on why indoor air quality is important in healthcare settings: shh-uk.org/shh-uk-positio… Why Indoor Air Quality In Healthcare Matters
This is excellent! 🔥🔥🔥 I fully support every one of the recommendations in this Position Statement from @SupportingHH_UK.
Read our position statement on why indoor air quality is important in healthcare settings: shh-uk.org/shh-uk-positio… Why Indoor Air Quality In Healthcare Matters
Such good news for those with #cysitcfibrosis This new once-a-day triple combination modulator drug provides a treatment option for some people who are not eligible or able to take Kaftrio and an alternative for people who are already taking Kaftrio. instagram.com/p/DMHxlWDqjYb/
George has been walking from Land’s End to John O’Groats for @long_covid support You can donate HERE 🔽 justgiving.com/page/george-br…
George has been walking from Land’s End to John O’Groats for @long_covid since March 23rd, 115 days later he's on the home stretch! Let's get him over his fundraising finish line too. Amazing, amazing achievement. justgiving.com/page/george-br…
You don't have to live in Bristol - write to your MP in any UK area about #cleanairforkids in your local school ACT NOW: Remember summer recess for Parliament starts on 24th July!! All the details here🔽 cleanairforkids.co.uk/help-us
If you use this link it's easy to download a template letter to send in support. You can adapt the letter to ask your politicians to give kids clean air to breathe, no matter where you live. And we especially want people in Bristol to write in support. cleanairforkids.co.uk/help-us
Breakthrough breast cancer vaccine raises hopes of eradicating disease breakthrough breast cancer vaccine has completed Phase one trials, with over 75 percent of participants showing a strong immune response, raising hopes it could help eradicate the disease by 2030.
Prioritising clean air in schools means fewer sick days, better focus, & healthier kids. Clean air tools like the Blast air purifier help make classrooms safer so every child can learn, grow, and thrive worry-free. 🏫💚 Every child deserves clean air. Let’s make it standard.
We believe clean air should be accessible to all & we’re so excited to support Air Library Scotland’s initiative to rent out air purifiers for free across Edinburgh. If you’re in Edinburgh, you can try one out for yourself. Request form: bit.ly/4nvFTsk
Good news! This week @sianberry announced bringing the Clean Air Bill back to parliament. "Breathing clean air should be a human right" 💯 I wrote to her to tell her of the fantastic campaign Clean Air for Kids. I hope she will add her support. 🙏 x.com/sianberry/stat…
Here are five benefits from improving air quality in schools: 🔷 Reduced sickness absence 🔷 Improved performance 🔷 Saving money on supply teachers 🔷 Better learning experience 🔷 Less sickness for parents Can you help the campaign? cleanairforkids.co.uk/help-us