Linda Tannenbaum, Founder and CEO of Open Medicine Foundation, will deliver the inaugural lecture of Faculty of Medicine of the University of Lisbon’s new Open Lectures series on May 25.
Her presentation, “Long COVID and Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS): Research and Knowledge,” will explore the growing scientific understanding of ME/CFS and Long COVID and the urgent need for continued research progress.
📅 May 25
🕑 2:00 PM WEST
🕙 10:00 AM BRT
🕘 9:00 AM EST
📺 Watch live on YouTube:
FMUL YouTube Channel
Free and open to all. No registration required.
have shed some real tears over the way you’ve received “does the world miss me back”, thank you 🥹
for those asking when it will hit music platforms…first of all: you are the light of my life. secondly, this was just a partial demo. i’ll record the full song and release it together with a very special film later this year if all goes well. big if, as always.
a bit of context in the spirit of awareness month: the only reason i’ve been able to make a decent amount of music lately, is because on the days that i write/record/mix, my mom does everything else for me. she opens the blinds. she cooks. brings me food, medication and oxygen when needed. takes empty dishes and bottles back downstairs. cleans my toothbrush container (i work, eat, read, sleep, wash my face and brush my teeth in bed). she calls & e-mails my doctors. brings packages upstairs. empties my trash can. etc. etc. etc.
i have about three to four usable hours on a great day. barely one on a bad day. so i have to choose. being creative costs me the little bit of independance i’ve gained. i have to choose between a basic hygiene day or a recording day. a writing day or a texting my friends day. a singing day could cost me my phsyical comfort and capacity for weeks afterwards.
no person with (moderate to) severe ME would be able to live a remotely creative life without immense help, immense physical payback and immense sacrifice in other areas. making art often hurts us as much as it heals us.
which is why i think every single artist with me/cfs still creating against the current deserves their flowers. hence slide 6 💙 (please feel free to add yourself & other artists in the comments! i could only cram so many handles in that chaos graphic)
thank you to my amazing mom, for helping me do something that keeps my soul from starving without my body completely collapsing.
and fuck this insidious disease and the lack of support from all the institutions whose only job it is to support sick and disabled people.
{shoutout to @lowenergylounge and @openmedf for the question prompt!}
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#disabledartist #pwme #chronicillness #mecfsis #millionsmissing
The CTN Lite survey closes tomorrow, May 15.
We know surveys take energy you don't always have. If you're able to give the CTN Lite survey a few minutes before it closes tomorrow, your answers go directly to the researchers shaping what comes next for ME/CFS and Long COVID.
Every response counts. Survey link in bio!
🧬 Science Wednesdays: Multi-system chronic complex disease
What is a multi-system chronic complex disease?
While the term multi-system chronic complex disease is perhaps overwhelming at first, each component is relatively straightforward when you break it down. Multi-system is used to indicate that diseases within this group involve multiple systems in the body (e.g., immune system, cardiovascular system, etc.). Chronic is used to show that these diseases affect people for long periods of time (e.g., six months or longer). Finally, complex is included in the term to acknowledge that the diseases can result from a combination of things (e.g., genes, environment), which makes them challenging to understand.
Why use this term for ME/CFS and Long COVID?
Many terms have been used to describe the type of disease ME/CFS and Long COVID are. Multi-system chronic complex disease seems to appropriately encompass the aspects of these conditions that are widely accepted. They are long-term diseases that affect multiple systems in the body and have thus far been challenging to understand. In addition, the term is inclusive of the people that fit the diagnostic criteria for them, including cases that develop from unknown or potentially less common triggers.
At Open Medicine Foundation, our purpose is to revolutionize the way we understand and treat multi-system chronic complex diseases, with initial focus on ME/CFS and Long COVID, by illuminating their mechanisms, accelerating effective treatments, and empowering personalized care.
Impact on Approaching Research
Traditionally, medical care systems and research institutes are set up to study, understand, and treat diseases via specific, singular systems. This approach is not sufficient for addressing a multi-system chronic complex disease, however. Open Medicine Foundation aims to break the traditional mold and remove research silos via our Collaborative Approach to Systems Research model, bringing together different areas of expertise to create a more holistic approach.
Learn more at omf.ngo.
May 12 marks International ME/CFS Awareness Day. This year we asked our community to share the questions they live with because of ME/CFS. Here are some of their responses.
Visit the link in bio to join us in raising awareness.
#MECFSAwareness #EndMECFS
Let’s make the invisible, visible. 💙
ME/CFS is a life-altering illness with no approved treatments and no clear roadmap. For the millions living with it, and those who care for them, uncertainty shapes daily life in many ways.
This May, we’re focusing on the questions we carry as a way to share what it means to live with this condition.
Through #MECFSis, our community is turning an invisible struggle into the momentum we need to drive research forward and find the answers this community deserves.
Thank you to everyone who’s shared so far. Your voice helps make ME/CFS harder to ignore. 💙
#MECFSis #MECFSAwareness #MECFS
I'm lucky, I don't always have to be in the complete darkness.
In stillness. In silence.
Too many of us disappeared into the darkness.
Alone. Neglected. Dying.
I'm lucky, I have people that care.
For me. About me.
Too many of us have been abandoned by people that should care.
Family. Friends. Doctors.
I'm lucky, I'm alive.
In my bed. Pacing.
Too many of us aren't. Lost to a system that failed them.
Blue Roses. Candles. Grief.
I'm lucky, I can type these words.
For everyone who can't.
Too many of us disappeared into the darkness.
Alone. Neglected. Dead.
✨
When will you see us? When will you notice us?
When will it be enough? When will we have shared enough blue roses for you to care about this illness that is taking our lives, loved ones, friends, family?
#mecfs me awareness day #chronicillness disability #meawareness #disabilityawareness
ME/CFS is not “just fatigue”. For many of us, it is life-altering disability.
It can take away work, freedom, identity, friendships, family life, independence, and the future you thought you had.
Many patients are housebound or bedbound. Many are hidden away. Many are left without proper care. Families are forced to become healthcare systems.
Long Covid has made this crisis even more urgent: many now live with ME/CFS-like symptoms, including post-exertional malaise and severe loss of function.
Still, ME/CFS remains severely underfunded, misunderstood, and stigmatized.
These are the questions I wish more people would ask.
Please swipe, read, share — and help make severe ME/CFS visible.
#MECFSis #MECFSAwareness #SevereME #LongCovid #millionsmissing
#MECFSis wondering: ‘Will I remain isolated and lonely for the rest of my life?’ It is the question that comes back to me again and again on my darkest days.
As I lay on the sofa in the house I live in on my own, and I can’t touch my phone to text my friends and family due to the severe migraine, or my fingers hurt too much to hold it up, or I’m too nauseous to look at the screen, this one thought that summarises my biggest fear is a returning feature.
Having ME/CFS means not being able to live life to the fullest. Or even to the half-est. Most of us don’t get past 20% and way too many of us exist below 5%.
That’s not living. That’s barely existing. Add the isolation and the loneliness and things get very dark and bleak very fast.
I’ve been ‘living’ with this illness for 25 years this month exactly. It means after twenty-five years the world has not been able to find any type of treatment, therapy or cure. Nothing. There are clues, there is research, but not enough to make our lives easier. We still need money. So much more money.
Thank you @openmedf for raising those much needed funds for much needed research. You represent our hope. Thank you @lowenergylounge for letting us be us, in every beautiful and painful moment.
Sending love and hugs to all of my ME friends all over the world. We are one in this and we got each other.💙
x Sandra
#mecfs #mecfsawarenessmonth #mecfsawarenessday #spoonie
May 12th is Myalgic Encephalomyelitis (ME/CFS) Awareness Day and I wish I’d known about this neuroimmune condition before I developed it. I wish my doctors had known too.
Latest research proves there are measurable genetic differences but unfortunately, harmful past beliefs labeling it a psychological condition still affects patients today both medically, and in wider society.
We need people to read all about it - that’s why I chose this song. This knowledge can have such an impact on medical care and overall support, but it makes no difference if no one knows about it.
If everyone could read all about it, maybe less people will have to experience it.
I developed it as a fit and healthy 25 year old after a virus in 2019. After 4 years of Mild and Moderate ME, it became Severe 2.5 years ago. I’m one of the lucky ones.
Some have had it for longer than I’ve been alive, and there are children who get it before they really get to live. There are so many people suffering alone in darkened rooms - not because they want to hide away, but because they can’t speak, eat, or even roll over without becoming more ill. There are also those who have been lost to it.
This video shows a glimpse but doesn’t reflect my true reality, so here’s what it took to make it:
- started accompaniment in September (arranging for accessibility)
- singing in January (struggled through, had to cut bits together for the video and haven’t sung again since)
- adapted extra slides from previous years, saving research as I saw it
- final video finished at the start of this month
I am privileged to have moments where I can use my voice and energy this way, and I’ll gladly use it for those who have lost theirs.
Once there is proper awareness, people with ME/CFS won’t need to use their limited energy on it to receive the care and support they need.
‘Read All About It Pt.III’
Emeli Sandé (also original performer), Stephen Manderson, Thomas Barnes, Peter Kelleher, Benjamin Kohn, and lain James
Information
@emergeaustraliainc@bateman_horne_center@decodemestudy
Griffith’s National Centre for Neuroimmunology and Emerging Diseases
Also check out
@openmedf@meactnet
There’s so many questions that plague me with having severe ME/CFS, a Neuroimmune disease with no cure and no treatments. But, these two weigh heavily on my mind.
With the severity of my ME/CFS, which I developed from Long Covid, I can’t work. Which means no income. I have extreme phototobia, so I can’t look at a computer screen. I also can’t type on a keyboard, as I can barely move my arms. But you are posting on your phone? Yes, with the brightness at 5% and with dictation. Afterward, I need to lay in the dark for hours. 30 mins of cognitive work leaves my brain feeling like it was hit by a 2 x 4, and then I lose my speech. I could not work from my phone for 8 hours a day.
What about disability? The average time to get disability takes 3 to 4 years. At the start of the pandemic, I lost two jobs and was unemployed. Which means I don’t have 5 years of consecutive work credits leading up to the date of my disablement in Nov 2022. But, I do have years of work credits prior. So I’m eligible for social security at my gov’t retirement age of 67. But, how do I survive till then? Will I be alive by then?
Being sick means you spend so much on healthcare. My first year of ME/CFS cost thousands in medical bills. I currently need 24/7 care, but the expense is astronomical and unaffordable. What about my health insurance? It only covers home care for 1 hour a week. I must rely on my Ex for care and rapidly deplete my life savings to pay for caregiving 4 days a week. I recognize the privilege to have savings at all. But, I can’t sustain this.
And, why can’t I walk? No one fully knows, But, ME/CFS causes mitochondrial dysfunction and hypoxia to your tissues; my legs are dead weights. Long COVID causes muscle necrosis (a study proves this) and initiated autoimmune arthritis in my feet and ankles. I also developed POTS (a co-morbidity of ME/CFS) which causes orthostatic intolerance and a high heart rate, making it impossible to stand, and I, like many, must use a wheelchair. It’s hard to imagine a world where I’ll get function back in my legs.
May is ME Awareness month. You’ll see more posts from me about it ;)
#MECFSis #millionsmissing #unitedforme
Over 1,000 of you have already shared your priorities for the future of ME/CFS treatment research.
One week left to add yours.
The CTN Lite survey closes May 15. Your responses are directly influencing which symptoms and biological systems we prioritize first. This is science being shaped by the people who need it most.
Find the survey link in our bio. Caregivers can complete on behalf of patients and answers save if you need to take breaks.
Thank you for spending your spoons on this. We see you.
#MECFS #LongCOVID #CTNLite
