Long Covid Advocacy 💙
@LongCovidAdvoc
A non-profit social enterprise dedicated to people with #LongCovid + #ME. 💙📚 Home to the #pedanticzebra book club. 🛍️ http://longcovidadvoc.shop
👋 Welcome to our Master Thread 🧵 We’re here to shift the paradigm for #LongCovid + #ME 🖖 This is our low down in what we do, what we offer and why it matters. Our 1st principles: ⚖️ Legislate 🔍 Investigate 💨 Ventilate 📚 Educate Let’s go 👇 1/17
Dr. Izqueirdo on their now-recruiting Long Covid fibrin imaging study: “If we move into the lungs—and this subject was having a lot of breathing issues… we can see that there’s a huge uptake of fibrin. The answer we want to obtain with this study is ‘does fibrin imaging with PET…
A day after The ME Delivery Plan people with ME are still not receiving safe care & being misdiagnosed with psychiatric disorders (FND). @AshleyDalton_MP @wesstreeting Please sign for Savannah ✍️👇🖇️
My friend, Savannah, a 23yo woman with severe ME/CFS, is currently in a London hospital being denied the care she needs after being told to seek psychiatric help instead. Please help - sign the petition. change.org/SaveSavannah @MEAssociation @MEActNet @WorldMEAlliance
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.”
In further thinking about BACME & power & influence it's worth remembering Tony Benn's 5 questions: ❓What power have you got? ❓Where did you get it from? ❓In whose interests do you exercise it? ❓To whom are you accountable? ❓How do we get rid of you?
This is why genuine change is so difficult. No one has had the nerve to dismantle BACME - it is their flawed ideology that perpetuates the systemic flaws. Their rep. Gregorowski interviewed is involved in the new e-learning module.
For the next few weeks I’ll share stories from my photo project about #MECFS Before Hillary became ill she was an entrepreneur, running companies, sponsoring motor racing, making music and living a full life. Updates on exhibition & book: tinyurl.com/58khuv8z #MEAwareness
BBC Breakfast segment on the UK government's new #MECFS Delivery Plan (12 mins) Features Sarah Boothby and Dr Binita Kane, who warn the plan doesn't go far enough and won’t lead to immediate change for patients. youtu.be/GZbSrdtiA9k?si…
ME Delivery Plan is out & #pwME are let down again. "Exploration of a specialised service for very severe ME” and Ashley Dalton... After three years of research and consultation, you have to wonder how much further exploration is needed" thetimes.com/article/e4a603…
I’ve spent 3 years photographing people with #MECFS, a condition I’ve lived with since 1987. 50 people. Invisible & incurable illness. The work shows at Oxo Tower in September. Updates & book info here: tinyurl.com/58khuv8z #InvisibleIllness #PhotographyForChange
Thank you to Elly for speaking up about her family's experience of false FII claims. We know this is happening to families with Long Covid - even from mother & child both having the illness. Instead of care there are accusations of abuse - urgent reform is needed @RCPCHtweets
Really grateful to @GMB for bringing this issue to the fore. I hope @RCPCHtweets will now discuss with Professor Andy Bilson, Professor Luke Clements, Dr Fiona Gullon-Scott, Cathie Long and @emilydugan amongst many others. Time for change 🙏💜
RIP @Bridget_OShea ‘think of the time you had flu, think about how it would impact yr life if you felt that way every day for months on end -empathize The smallest morsel of sympathy can make 🌎 of difference for someone suffering misunderstood illness bridgetoshea.substack.com/p/coming-soon