Recruitment for our recent Mason-funded ME/CFS biomedical study in VIC, Australia is LIVE! Please get in touch if interested or have questions. Some more info: docs.google.com/document/d/1-2… #MECFS #LongCovid #Victoria #Science

VIC, Australia: MECFS study recruiting - Importantly, includes home visits for Severe patients 👏👏👏 Please do look into whether you can join this one.

Hey, VICTORIA 🇦🇺 Mason-funded ME/CFS biomedical study in VICTORIA, AUSTRALIA 🇦🇺 Researchers are so keen, if you’re severe they will come to you. Be a part of the solution!! 🙏🏼

Our social security system is failing Disabled people. We need change - cuts and sanctions are not the way forward. Use this handy tool from @z2k_trust to write to your MP and ask them to defend vital disability benefits ahead of the Autumn Budget. z2k.eaction.org.uk/autumn-budget-…

To everyone who lost their; health, livelihoods, marriages, kids, homes + more from contracting COVID in the line of duty, I’m sure today’s events at the #CovidInquiry were very triggering. Look after yourselves. The lack of reflection, humility and accountability is staggering.

When people say “I’m determined to beat this”… You are in a position to say that because you’re not quite so severely sick where researching, accessing treatments, sitting upright, talking, advocating for yourself is no longer an option or you have someone doing it for you.

We are excited to share that OMF’s Life Improvement Trial (LIFT) has officially launched. Recruitment and screening began in August and the first participants have now been enrolled. Learn more 👉 omf.ngo/lift-update/.

I read a beautiful article today from someone who was effectively “coming out” as chronically ill. She spoke of the struggles of admitting to the world that she was sick - of putting it in writing for everyone to see.  I struggled to admit I was disabled as well… 🧵/1

Why are they doing it all the time with no mitigations then? #CovidIsNotOver #CovidIsAirborne #FFP3 #HEPA #CleanAirNow

If you are a problem-solver who is sometimes seen as too blunt, and are giftedly sensitive and empathetic, then you might be #Autistic.

People with #MEcfs who benefited from Mestinon (pyridostigmine): Did it help you immediately on taking just small doses, or did you have you to push through diarrhoea side effects before a higher dose helped? Please 🙏🏻 RT

🧵I’m in a weird place with trying to maintain friendships with back to normal folks. The few people I stay in touch with are aware of my struggles with LC. They acknowledge Covid is bad & they feel for me. They’ve dropped off care packages & sent vitamins & gift cards…(1/5)

My mother has a problem comprehending why I don’t talk to a lot of my friends anymore. The fact that they don’t Act the same, Care the same and Love the same is something she just can’t grasp. I tried showing her a friend’s FB page where she announced the death of her sister

Do Not Attempt Resuscitation notices (DNARs) were placed on the medical files of many people with Down’s syndrome, autism and other learning disabilities who were otherwise healthy before contracting the virus. #BetterOffDead inews.co.uk/news/politics/…

I’m convinced that “healthy” people who don’t need to spend time in hospital truly believe that if they need it the experience will be quick, pleasant and infection free. Unless you interact with the healthcare system regularly - you really can’t understand how bad it’s become

This is meant to go live today at Padholme Road in Peterborough. Not sure if the company are able to provide a photo as it’s a digital board so if any #pwLC or #pwME are able to keep an eye out or get a pic let me know 😅

Covid Tales, a 🧵 My 89 year old dad with advanced Parkinson's and a host of health issues was infected with Covid in March. It was not diagnosed for 4 days, the ICU Drs in the meantime convinced him he was aspirating (you're dying, you know), and he went on palliative care.