To the women with #mecfs or #LongCovid who have lost the opportunity to have children, or raise the children they’ve had, we recognise your pain & loss. Thank you ⁦Hayley Gleeson⁩ ABC News⁩ #MyalgicEncephalomyelitis ⁦⁦Tracey Spicer AM GAICD⁩ abc.net.au/news/2024-12-2…

long covid isn't just stopping people from working, exercising, socialising, living independently. it's also snuffing out patients' dreams of having children, and complicating pregnancy for those who are able to conceive abc.net.au/news/2024-12-2…

Hayley Gleeson Thank you Hayley Gleeson so important to be getting stories like this about LongCovid, MECFS, heritable connective tissue disorders like Ehlers-Danlos out in the mainstream! Please check out Connective Tissue Disorders Network Australia an Australian NFP supporting those impacted by HCTDs 🙏

Hayley Gleeson Prof Brendan Crabb You've done an amazing job of portraying these diseases in all their complexity. One to consider for your journalism award Emerge Australia ??

Thank you Hayley Gleeson so important to be getting stories like this about LongCovid, MECFS, heritable connective tissue disorders like Ehlers-Danlos out in the mainstream! Please check out Connective Tissue Disorders Network Australia an Australian NFP supporting those impacted by HCTDs 🙏

The impacts of fertility and childbearing with complex chronic illnessEs such as LongCovid, MECFS and HCTD like Ehlers-Danlos syndrome are tremendous. This article delves into the nuance of navigating such.

Connective tissues The 'issues with our tissues' continues... Here is our well known umbrella and if you would like any of our infographics please let us know ! #hypermobility #neurodivergence #Autism #ADHD #dyspraxia #EDS #HSD #POTS sedsconnective.org

Thrilled to share our published study on cerebral hypoperfusion in #POTS! Findings highlight key implications for clinical management and future research into autonomic disorders. Read more: rdcu.be/d7UFW SAHMRI @CelineGallaghe2 Dennis H Lau ADARC #Dysautonomia

Harry Spoelstra SAHMRI @CelineGallaghe2 Dennis H Lau ADARC Thanks for sharing and continuing to bring attention to science that fights the archaic narrative that post viral syndromes are purely psychosomatic. 🙏

New from Stanford Neurology & Neurological Sciences Among 491 individuals with no prior history of #autonomic disorders: 🔹 44% developed an autonomic disorder after COVID-19 🔹 75% of these had new onset POTS link.springer.com/article/10.100…

BREAKING: Cutting-edge Recommendations Provide Treatment Path for Millions of Long COVID patients 💊 In a new report global experts outline key considerations to address persistent SARS-CoV-2; provide a roadmap to test critical new long COVID therapies: polybio.org/cutting-edge-r…

Our new Viewpoint is out! We draw from treatment strategies in HIV, Hep C & other infections, to detail key considerations for #LongCovid clinical trials targeting persistent #SARS-CoV-2. These include combination trials of drugs that target both the virus and the immune system:

At the APAA Summit in Canberra, Emerge Australia CEO Anne Wilson represented those with ME/CFS and long COVID prior to the election with Petrina Keogh of Medicines Australia. Stay tuned for more updates!

This is a great article discussing the pitfalls of applying the term #DGBI and recommendations for incorporating new objective findings in diagnosing and treating conditions such as #IBS. rdcu.be/ezA8q

This is tracheal hypermobility, seen in hypermobility spectrum disorders (HSDs) such as Ehlers-Danlos syndrome (EDS). The trachea is normally supported by cartilage and connective tissue. In those with EDS or HSD, the connective tissues are weaker or more lax, which can affect

"...could diagnosis confine as much as it liberates?" On the cover, Daniel Marchalik & Nicholas Mark explore the nuanced role of diagnosis in health and identity. Find out more in our new issue: hubs.li/Q03Q07_W0

We are hosting a drop-in session at the Houses of Parliament on Tuesday, 25th November to inform MPs about these conditions, and what they can do to support. Ask your MP to attend using our simple form: actionforme.eaction.org.uk/dropin 4/5

You can also learn more about the alliance, which includes: Ehlers-Danlos Support UK, MastCellAction, PoTS UK , Long Covid Kids / [email protected], @Long_Covid, and @ActionforME, here: overlappingillnessalliance.org.uk 5/5

Jarred Younger is starting the process of getting Dextronaltrexone, a dedicated anti inflammatory targetting glial cells in the brain, through the regulatory process so he can run a trial. He waited 12 years and has decided its time to do it himself. youtube.com/watch?v=KpsK6R…

The #REIMAGINE study of the #microbiome MAST Research Program has been so successful. We are excited to announce a collaboration Cedars-Sinai Cedars-Sinai Guerin Children's (Drs. Wozniak and Rabizadeh). The first study to look at the small intestinal microbiome of children called #PREIMAGINE.