St George's ILD Support Group
@stg-ildsupportgr.bsky.social
We are an ILD Support group, open to patients, relatives and friends. You are all welcome to join us for a regular, friendly and supportive chat and find out more about ILD.
For more details - http://ildgroupstgeorges.com
For more details - http://ildgroupstgeorges.com
Reposted by St George's ILD Support Group
This review offers a detailed overview of how digital health can be utilized in the management of #ILD & #COPD A must read for all clinicians implementing supported self-management programmes @ucl.ac.uk @stg-ildsupportgr.bsky.social @ats-clinicalprobs.bsky.social doi.org/10.3389/fmed.2025.1361667
Frontiers | The role of digital health in respiratory diseases management: a narrative review of recent literature
doi.org
February 26, 2025 at 8:36 AM
This review offers a detailed overview of how digital health can be utilized in the management of #ILD & #COPD A must read for all clinicians implementing supported self-management programmes @ucl.ac.uk @stg-ildsupportgr.bsky.social @ats-clinicalprobs.bsky.social doi.org/10.3389/fmed.2025.1361667
We look forward to connect with the Interstitial Lung Disease (ILD) and Respiratory communities and continue to build our knowledge, support each other and share our lived experience.
January 27, 2025 at 10:12 AM
We look forward to connect with the Interstitial Lung Disease (ILD) and Respiratory communities and continue to build our knowledge, support each other and share our lived experience.
We've brought over most of our posts from twitter, thanks to @en.blueark.app for their help. Great service!
January 27, 2025 at 10:06 AM
We've brought over most of our posts from twitter, thanks to @en.blueark.app for their help. Great service!
We have #justsponsored Denise Bray, who's fundraising for Action For Pulmonary Fibrosis on @JustGiving. Donate now...
January 27, 2025 at 12:24 AM
We have #justsponsored Denise Bray, who's fundraising for Action For Pulmonary Fibrosis on @JustGiving. Donate now...
Post-transplant life and the 'big C'
Date: Monday 12 February
Time: 1pm to 2pm.
Join us for the next in the series of webinars for heart and lung transplant patients, their families and carers.
Select the link below to...
Date: Monday 12 February
Time: 1pm to 2pm.
Join us for the next in the series of webinars for heart and lung transplant patients, their families and carers.
Select the link below to...
January 27, 2025 at 12:24 AM
Post-transplant life and the 'big C'
Date: Monday 12 February
Time: 1pm to 2pm.
Join us for the next in the series of webinars for heart and lung transplant patients, their families and carers.
Select the link below to...
Date: Monday 12 February
Time: 1pm to 2pm.
Join us for the next in the series of webinars for heart and lung transplant patients, their families and carers.
Select the link below to...
At last a milestone reached in accessing medication for those living with #IPF . NICE has abandoned the 80%-50% FVC restriction to access Nintedanib treatment....
January 27, 2025 at 12:24 AM
At last a milestone reached in accessing medication for those living with #IPF . NICE has abandoned the 80%-50% FVC restriction to access Nintedanib treatment....
John from our group is speaking to specialist health professionals at the #ILDIN22 conference today, telling his story from IPF to life-saving lung transplant.
What can ILD health staff learn from his experience?
What can ILD health staff learn from his experience?
January 27, 2025 at 12:24 AM
John from our group is speaking to specialist health professionals at the #ILDIN22 conference today, telling his story from IPF to life-saving lung transplant.
What can ILD health staff learn from his experience?
What can ILD health staff learn from his experience?
Giving hope to people living with fibrosing lung disease #IPF - launch of the Margaret Turner Warwick Centre https://nhliblog.wordpress.com/2022/02/10/launch-of-the-margaret-turner-warwick-centre/
launch of the Margaret Turner Warwick Centre
On the 4th of November 2021, the Margaret Turner-Warwick ...
nhliblog.wordpress.com
January 27, 2025 at 12:24 AM
Giving hope to people living with fibrosing lung disease #IPF - launch of the Margaret Turner Warwick Centre https://nhliblog.wordpress.com/2022/02/10/launch-of-the-margaret-turner-warwick-centre/
It is clear from the PM's announcement that those living with chronic and long-term health conditions and respiratory conditions in particular, but not exclusively, are no longer a consideration for this PM and government.
https://www.bbc.co.uk/news/uk-60319947
https://www.bbc.co.uk/news/uk-60319947
Covid: Self-isolation law could be scrapped in England th...
The rules are due to end in March - but that could be bro...
www.bbc.co.uk
January 27, 2025 at 12:24 AM
It is clear from the PM's announcement that those living with chronic and long-term health conditions and respiratory conditions in particular, but not exclusively, are no longer a consideration for this PM and government.
https://www.bbc.co.uk/news/uk-60319947
https://www.bbc.co.uk/news/uk-60319947
Do you know people with a passion for lung health who could join the team @lungtaskforce as patient and carer voice representatives? It’s a great way to share your experiences and help influence vital work. Apply before 31 January 2022....
January 27, 2025 at 12:24 AM
Do you know people with a passion for lung health who could join the team @lungtaskforce as patient and carer voice representatives? It’s a great way to share your experiences and help influence vital work. Apply before 31 January 2022....
Very sad to hear of the death of Rosemary Bechler, having struggled with #IPF for 5 years. We have lost an amazing and inspirational leader and campaigner for democracy and equality. #PF #curepf
https://www.opendemocracy.net/en/rosemary-bechler-obituary/?s=08
https://www.opendemocracy.net/en/rosemary-bechler-obituary/?s=08
Attention Required! | Cloudflare
www.opendemocracy.net
January 27, 2025 at 12:24 AM
Very sad to hear of the death of Rosemary Bechler, having struggled with #IPF for 5 years. We have lost an amazing and inspirational leader and campaigner for democracy and equality. #PF #curepf
https://www.opendemocracy.net/en/rosemary-bechler-obituary/?s=08
https://www.opendemocracy.net/en/rosemary-bechler-obituary/?s=08
How are COVID vaccines working in the immunocompromised? October 28, 2021, 3pm BST.
Join this webinar to hear from an expert panel discussing how vaccines are working in those with a compromised immune system.
Webinar registration...
Join this webinar to hear from an expert panel discussing how vaccines are working in those with a compromised immune system.
Webinar registration...
January 27, 2025 at 12:24 AM
How are COVID vaccines working in the immunocompromised? October 28, 2021, 3pm BST.
Join this webinar to hear from an expert panel discussing how vaccines are working in those with a compromised immune system.
Webinar registration...
Join this webinar to hear from an expert panel discussing how vaccines are working in those with a compromised immune system.
Webinar registration...
This is #IPFWeek and #OrganDonationtag/OrganDonationWeek" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link">#OrganDonationWeek. A lung transplant is a life-saver for those with IPF, if they are lucky enough to qualify for a transplant.
Please have a conversation with your loved ones about #OrganDonation that could one day save lives. #LeaveThemCertain
Please have a conversation with your loved ones about #OrganDonation that could one day save lives. #LeaveThemCertain
January 27, 2025 at 12:24 AM
This is #IPFWeek and #OrganDonationtag/OrganDonationWeek" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link">#OrganDonationWeek. A lung transplant is a life-saver for those with IPF, if they are lucky enough to qualify for a transplant.
Please have a conversation with your loved ones about #OrganDonation that could one day save lives. #LeaveThemCertain
Please have a conversation with your loved ones about #OrganDonation that could one day save lives. #LeaveThemCertain
I've been very inspired by the Tokyo Olympics and I'm particularly delighted on how well *Team GB* have done - 4th over! And it got me thinking, why have we done so well?... 1/3
January 27, 2025 at 12:29 AM
I've been very inspired by the Tokyo Olympics and I'm particularly delighted on how well *Team GB* have done - 4th over! And it got me thinking, why have we done so well?... 1/3
UK Government: Keep legal requirement to wear a face covering in shops, supermarkets, etc after July 19th - Please think of those who are clinically extremely vulnerable and have been shielding for over 16 months - Please sign this Petition! http://chng.it/DjDZXNbc via @UKChange
194,547 people signed and won this petition
Keep legal requirement to wear face coverings in shops an...
chng.it
January 27, 2025 at 12:29 AM
UK Government: Keep legal requirement to wear a face covering in shops, supermarkets, etc after July 19th - Please think of those who are clinically extremely vulnerable and have been shielding for over 16 months - Please sign this Petition! http://chng.it/DjDZXNbc via @UKChange
We are fortunate to be able to include a pulmonary rehab session at the start of our support group meetings over Zoom. This has really helped us to maintain our health over the last year. #PulmonaryRehabWeekUK21
January 27, 2025 at 12:29 AM
We are fortunate to be able to include a pulmonary rehab session at the start of our support group meetings over Zoom. This has really helped us to maintain our health over the last year. #PulmonaryRehabWeekUK21
Thank you Maxine and Dee for sharing your Personal experiences of caring for loved ones with #PF’. So informative, positive and hopeful. #CarersWeek2021
January 27, 2025 at 12:29 AM
Thank you Maxine and Dee for sharing your Personal experiences of caring for loved ones with #PF’. So informative, positive and hopeful. #CarersWeek2021
Vaccination part one! John from our support group, who is clinically extremely vulnerable, rolls up his sleeve for the first of his covid vaccine jabs. Very well organised at GP surgery. Please make sure you get yours as soon as you are invited.
January 27, 2025 at 12:34 AM
Vaccination part one! John from our support group, who is clinically extremely vulnerable, rolls up his sleeve for the first of his covid vaccine jabs. Very well organised at GP surgery. Please make sure you get yours as soon as you are invited.
Read Ron's honest and powerful interview on living with #IPF during Covid-19. Interview for the ERS Congress 2020 https://www.europeanlung.org/en/news-and-events/news/interview-with-ron-flewett,-patient-speaker-at-ers-congress-2020#.X4GWVem575Q.twitter
Interview with Ron Flewett, patient speaker at ERS Congre...
www.europeanlung.org
January 27, 2025 at 12:34 AM
Read Ron's honest and powerful interview on living with #IPF during Covid-19. Interview for the ERS Congress 2020 https://www.europeanlung.org/en/news-and-events/news/interview-with-ron-flewett,-patient-speaker-at-ers-congress-2020#.X4GWVem575Q.twitter
We are very grateful to @GeetaVekaria for presenting a very informative and interesting talk on oxygen and #ILD at yesterday's virtual support group meeting. Thank you.
January 27, 2025 at 12:34 AM
We are very grateful to @GeetaVekaria for presenting a very informative and interesting talk on oxygen and #ILD at yesterday's virtual support group meeting. Thank you.
Another successful ILD support group meeting today including our virtual PR session. Thanks also to @TriathARon for his helpful talk on the @PFTrust.
January 27, 2025 at 12:34 AM
Another successful ILD support group meeting today including our virtual PR session. Thanks also to @TriathARon for his helpful talk on the @PFTrust.
There is a real concern among patient groups that remote consultation, for all, will become the new norm post-Covid-19. How can this be safeguarded against at a time of ongoing C-19, increased fiscal pressure on the public purse and continued health inequalities? #ABCchat
January 27, 2025 at 12:34 AM
There is a real concern among patient groups that remote consultation, for all, will become the new norm post-Covid-19. How can this be safeguarded against at a time of ongoing C-19, increased fiscal pressure on the public purse and continued health inequalities? #ABCchat
Interesting article from 2003 and very relevant to where we are today #ILD #COVIDー19 https://pubmed.ncbi.nlm.nih.gov/12652455/
Viral-induced inflammation in interstitial lung diseases ...
Viruses have long been implicated as either causative age...
pubmed.ncbi.nlm.nih.gov
January 27, 2025 at 12:34 AM
Interesting article from 2003 and very relevant to where we are today #ILD #COVIDー19 https://pubmed.ncbi.nlm.nih.gov/12652455/