"We are less than a month away from launching #MillionsMissing 2024, and we are thrilled at the success we’re already seeing with the campaign!
We know the impact of #TeachMETreatME will be HUGE with thousands more clinicians across the country being educated on how to diagnose and treat the ME. Some of these clinicians will become the specialists we so desperately need."
Gosh, it’s incredibly hard to see all the posts from CSS Day. It feels like a punch to the gut. I wish I were there. But I absolutely cannot speak at indoor events where zero people are wearing masks. Everyone just traveled. The risk of getting COVID is incredibly high. Such places are completely inaccessible to disabled people like me. I am excluded. So I sit at home with fomo, wondering how we got to this place. Knowing people I use to consider friends do not actually care. #MillionsMissing
ME/CFS explained for carers.
«ME/CFS is a complex and disabling disease that affects many systems of the body. These include, but are not limited to, the brain, muscles, digestive, immune and cardiac systems.» «It is not something that they did wrong or a psychological illness.» https://www.emerge.org.au/me-cfs-explained-for-carers/
«It’s the greatest medical scandal of the 21st century. For decades, patients with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) have been told they can make themselves better by changing their attitudes. This devastating condition, which afflicts about 250,000 people in the UK, was psychologised by many doctors and scientists, adding to the burden of a terrible physiological illness.» written by George Monbiot. https://www.monbiot.com/2024/03/27/first-do-no-harm/ #mecfs@mecfs#MillionsMissing
There's an Activism From Home toolkit (a google doc) that talks about how to amplify the event / live-streamed press conference. It mentions twitter & instagram but I'll only be sharing things here.
I sent in my decorated pillowcase already - it was delivered. I'll post a photo of it on May 12.
Please, #ablebodied#privileged people think people like me should just 'work harder'. Ya think your fucking spoiled kids could deal with #disabilities without your fucking bloody money??? SAY THAT SHIT TO MY FACE.
We are capable! We are human beings! We deserve human rights! We will fight for ours!
@msquebanh
Some of the reactions to my sitting there taking rests on natures walks have been very interesting. Most are encouraging, but some it's is obvious they are disgusted.
I try to choose mostly flat trails due to my ME/CFS. That isn't always an option. I need a 4WD scooter so I can do longer trails. #MECFS#MillionsMissing
This is extremely important for those with Long COVID and ME/CFS. ""Experts warn that exercise can "harm" and other approaches are needed"" Spread everywhere! You may help save lives.
I noticed this issue in myself long before I was diagnosed with ME/CFS. Nobody would listen. I kept getting told I need to exercise more. As a former farmer who was raising bull breed stock, getting enough exercise wasn't the problem. Too much was.
"Millions Missing 2024 is off to a great start! We are so thrilled that Teach ME, Treat ME is resonating with our community. Over 100 people attended our kickoff session last month …"
Interested in signing up to host an event? Or volunteer with a team? Sign up here:
"We are excited to announce the kick-off of #MillionsMissing 2024 – our ongoing campaign to Teach ME and Treat ME by educating medical providers across our nation’s hospital systems and medical schools about myalgic encephalomyelitis (ME)."
Good (laypeople) summary of results of the latest #LongCovid research study published in Science showing that certain proteins remain in alarm in Long Covid patients causing tissue damage and microclotting in the blood (and thereby explaining fatigue, brain fog and exercise intolerance)
Today is #MillionsMissing day - a day to bring awareness of the many people whose lives have been impacted by #MECFS.
I'm lucky that I could get out of bed today and travel to the Nebulas conference. My spouse loaded my powered wheelchair into my car. I'm currently resting in the back seat until my hotel room is ready.
For far too long, this disease has been dismissed and ignored by medical research. #LongCovid has forced a reckoning, but in the meantime, please do not forget that we exist.
#activityPubHelp it also looks like some of the alt text has stopped coming thru after my plug in update!
Naptime since I’m sooo exhausted but if anyone has recommendations on how to fix this I’d be very thankful , especially since I want to make sure the #MillionsMissing week art is accessible. Will try a few more tests later tonight :/
In 2017, I was an avid salsa and tango dancer. Then I breathed in too much wildfire smoke after catching a virus, got sick, and never got better. Now I use a cane for short distances, a wheelchair for long distances, and can't stay standing for over 10 min. #MillionsMissing#MECFS
2-minute video of Dave reading his poem plus a separate text piece by him
Dave who became ill with #CFS at 21 17 years ago, describes what it’s like to live with the condition, the impact on his life & sense of self worth, & how he has built a meaningful life, despite the condition.
“Living with chronic fatigue syndrome (CFS) is like being erased. It rubs out what my brain and body can do, turning me into a reduced version of myself.”
“Having CFS is like being a dormant seed, waiting for just enough energy to come alive.”
Change.org Petition to Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review (www.change.org)
This petition has been posted on behalf of the committee of the international Science for ME forum:...
CDC Data Brief: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Adults: United States, 2021–2022 (www.cdc.gov)
National Center for Health Statistics: Data from the National Health Interview Survey...