Thread of Drs and scientists working hard to solve
#Longcovid
and
#MECFS
, because god knows we need reminders that there's hope for an end to this for all of us. The light at the end of the tunnel is very very bright☀️
This time last year, I saw this infographic from
@TheEconomist
. I thought wow that would suck, but not the end of the world to have a lingering cough or headache. 1 year later thanks to
#longcovid
I haven't been able to work since June. 1/
Before I learned the hard way last year, I was one of those people who was under the impression that
#LongCovid
is lingering cold / flu symptoms - a cough, bit of a headache, being sleepy during the day. People still have no idea what it can do
I've been sick for nearly a year and a half now, and on here for
#LongCovid
for about a year.
Sometimes it feels like so little progress is being made but in the last year or so:
I tend to hold my tounge when there's something that I don't understand. I like to watch, listen, take my time. I watched as others speak up and be punished for it, for months. For months I've watched as the community that I love get taken over by wreckers
It's honestly wild to me that anyone thinks CBT can help
#LongCovid
, when it barely works for garden variety anxiety. Ask literally anyone who's done any CBT
I've had
#LongCovid
long enough that I forget how limited I am sometimes, until I hear myself telling people about it. It would have been unfathomable just 16 months ago that for several months I couldn't unpack the dishwasher and put on the laundry in the same day
There are people joining the Long Covid support groups who got infected in the pre-xmas wave 😣
My first time seeing new sick people from a wave after me. Can't imagine how pwME or first wavers feel.
How many more until we find a cure... ❤️🩹
#LongCovid
#MECFS
Even now, my brain gets tired writing out a few sentences. The public messaging still hasn't caught up. Healthy people, 2021 me included, have no concept of this. I don't feel 'sick', but my body doesn't work. Little bits of activity and then it starts to give out
I remember in the first couple of months of LC reading about very severe
#MECFS
, and it just being too scary to comprehend I just blocked it out. I wonder if this is how most healthy people deal with
#Longcovid
Kinda just want to give a shout out to Aaron I've seen him dropping notes of encouragement all over twitter and reddit for months and months, he's probably saved lives doing this
I debate walking 200m to get groceries some days in case I crash. For several months I couldn't think or write out sentences, it was a scary time. I texted friends in despair saying that I missed my brain, and couldn't reply because my brain was overwhelmed by the task.
Ok I'm not the sciencey tweeter but I'm sorry, gut bacteria can get in the brain AND correlates w microglial activation AND is reversible potentially w/ diet AND implicated in parkinsons and alzheimers??
h/t
@cjmaddison
Long covid strips everything away but at your core you find the sole single kernel of your soul that screams a primal cry – I am alive – I am alive and I want to keep living
Every time I hear a friend test positive I wonder if they'll join me in this liminal space. I wonder if it's worth warning people. I know human brains don't like vague warnings that they can't action. So most times I shut up
The last Christmas I had before I got sick.. aka where I would be if not for
#LongCovid
Instead of being on the beach I'll be tuning into the
#LongCovidMoonshot
space tomorrow to talk sending holiday cards to congress! I'm from🐨but hope 🇺🇸 friends can send one in for me <3
This survey result from
@qldhealth
is getting reported as "long covid symptoms no different from the flu", but the study results are actually more concerning than the headline attempts -
Holding myself back from coming out and saying how I feel. Sticking to replies and DMs. Being afraid of what might happen if I say something. Supporting Moonshot already got me doxxed. There's a reason why I was a lifelong lurker before LC
'Wreckers have no principles except to advance their position in whatever hierarchy exists... they only care about personal advancement, they are not restrained by principle, morality, political expediency, or any desire to advance the cause'
But my reticence is starting to feel like cowardice. I want to make it clear that without taking action, we stand to lose this community. And I'm not willing to let that happen without saying something.
For many months, nearly a year, people have been driven out of this community, out of advocacy, because of harassment. Look at the date on this. We stand to lose much more, for the sake of 'tolerance'
Shaming advocates and wishing ill on them. Framing grants - something every NGO receives - as corruption. Stating that advocacy organizations want to keep patients sick. Telling our best researchers that they are killing people by advocating
Telling politicians that LC advocacy organizations are not to be trusted - you don't think that could backfire? Calling advocates social media whore and minimizers. Telling yet another researcher that she is a murderer. Sowing division between LC and ME.
It still feels uncomfortable to name people - maybe because our culture looks down on calling people out - on 'tattling'. But there is no getting around it. People who are in LCAP and their orbit are at the centre of this. Apologies for lack of alt text - many screenshots to come
I'm about to attempt the first social activity I've done in two months, carefully planned to minimise energy needed. Even then, I have no idea if this means I'll be non functional for the next week. No idea if it'll set off a baseline declining crash.
Suggesting that Prof Iwasaki is corrupt. Suggesting that Lisa McCorkell is corrupt. Suggesting that Eric Topol is corrupt. Suggesting that Gez is corrupt.
Digging through
#MECFS
annals - "Interesting note: The one lifestyle change that doesn’t seem to help is exercise" from a 2011 CureTogether blog
Still a novel finding in 2022 apparently!
cc:
@elizacharley
The
#LongCovid
subreddit now has more members than: r/cfs, ehlersdanlos, multiplesclerosis, dysautonomia, lupus, psoriasis, rheumatoid, ankylosingspondylitis, hashimotos, UlcerativeColitis
Though still less than r/CrohnsDisease, diabetes, chronicPain, fibromyalgia, diabetes_t1
People should know that in many cases, "fatigue" = severe muscle weakness that you can't walk more than a few hundred steps, and "brain fog" = brain shutting down, loss of functions like reading, memory formation. Millions of people from 2020 overseas are still sick
#LongCovid
This week, we talk to Dr Bernard Shiu about symptoms and care for long COVID.
“While we are still learning about this new condition, what we know for sure is that the best way to not get long COVID is to not get COVID.”
For more information, visit:
Imagine knowing that funding for long covid is at risk of being at ZERO and thinking that someone asking for ONE BILLION DOLLARS PER YEAR is sabotaging your movement deliberately
This is so so magic - like everyone with
#LongCovid
I've spent the past few months scouring the internet looking for clues on what treatments might help.
@EurekaHealthApp
has done all the hard work and put it all together in one place!! This is beyond magic!! 💖💖💖
We need better data on
#LongCovid
treatments that work. Can AI language models like ChatGPT help?
🧑💻 After hacking on it for the last few weeks, we think the answer is yes.
🚀 We're sharing out a preview today - let us know what you think:
Welp, my first full year with
#LongCovid
down and I'm.. not recovered. I have had some gains with my cognitive functioning that I've been very grateful for - without these gains I don't know what kind of mental state I would be in right now
@AaronCa11
The first line already got me "As a busy working mother of three I don’t have time to be ill." I didn't have time to be ill either, that's not how it works
This is in reply to a researcher advertising their clinical trial for LC
Is this what we want as a community? Researchers accused of murder for trying to recruit patients into a clinical trial?
please understand that if you have been consuming the “lizard people” “levity” you have been fed dangerous, hateful bigotry that is immediately familiar to anyone in conspiracy circles:
Talking with folks about LC & ME symptoms & how we need better language.
Fatigue to some means they can’t do anything after work.
Fatigue for others means not being able to hold a phone.
I got trapped under my blankets the other night when I was to weak to move them.
Things unfathomable to me when I was healthy / abled--
waiting two years to see a doctor
being too sick to listen to music
or have the light on
triggering a crash from standing up for a minute too long
This is reality for too many of us 😔
If anything all I've seen is the opposite- ME losing research funding, researchers, clinicians, advocates to LC. It's not a zero sum game, but if it is, it's more than clear that LC is winning here
@MZissis1
@Nnwwzz124
"LC is going to take a back seat to ME if the ME orgs get their way." WHEN HAVE ME ORGS EVER GOTTEN "THEIR WAY"? This is a fear & frame that's been manufactured by LCAP *FOR YEARS*. It's not a fact. It has no basis in reality. No substantiation. There are endless screenshots ⬇️
Thanks
@alxalvaro
for covering this study which aims to aims to understand if COVID-19 causes damage to the❤️ & impacts functional capacity. We also want to know if best practice management (e.g. heart medication or exercise training) can restore function
@cstroeckw
Many thanks to you and other patient advocates, this pandemic has propelled me to investigate the pathobiology of
#longCOVID
,
#MECFS
and
#longLyme
🙏🏼 If enough people do the same, we can change how society and medicine view post-acute infection syndromes.
For
#severeMECFS
day, a reminder that ME/CFS is the one of the most underfunded diseases relative to its disease burden in the world.
Imagine how much low hanging fruit there must be. Imagine the suffering we can alleviate.
From the paper: "Viral reservoirs are a key driver of disease progression and persistence in many viral infections, and monocyte/macrophages are one of the major long-lived viral reservoirs in HIV patients following antiretroviral therapy"
'New Drug Breakthrough for Treating Long COVID & Preventing Reinfection'
'We are confident NACE2i is a potential treatment for long COVID that will relieve those debilitating symptoms and revive immune function'
ALS research funding from the NIH: ~$50m a year pre-2016, increasing to $100m+ after ALS groups hired a lobbying firm and formed an ALS congressional caucus
@bsw5020
@iamalsorg
"He read every book about AIDS activism, & learned that only a ‘sustained advocacy presence’ in DC could make ALS a priority.”
"The group hired lobbying firm & form an ALS congressional caucus, which worked to pass legislation that directs a $100 million a year to research."
“But where is the evidence that LCAP is harassing you and spreading lies?”
Well, let’s start here:
Alba hates our advocacy so much that she uses an image of MOONSHOT being DEAD as her banner.
Also pictured: an image implying that we have somehow killed tons of LC patients.
🧵
@ManvBrain
@zeynep
I was able to work part time a month after covid, walk 3km+ etc. Then I overdid it (multiple long walks ignoring increasing feelings of fatigue) and now I can't work at all. For months I could only walk a few hundred steps a day before my legs gave out. That's the harm Jeff
Endothelium = extremely resilient! If the reasons for pathol are addressed, healing can begin. Causes for pathology can be viral/bacterial & dysregulated inflammatory molecules, resulting in pathological clotting & platelet hyperactivation.
@dbkell
@doctorasadkhan
#TeamClots
Love it when the place doing a long covid study blood draw has a broken elevator and doesn't tell you
Typing this while I'm resting between the flights of stairs I gotta walk instead
Lots of folks wouldve not had this option and wouldve what had to just come back another day?
My
#LongCovid
symptoms are milder than others, I can still walk a few hundred metres a day, and I can still read a short article or two. But I still haven't been able to work after nearly 10 months
Their intervention involves suppressing neuro-inflammation and then reseting the neuroendocrine HPA axis to break out of the stable sickness state and simultaneously restore multiple systems to homeostasis. Dr. Klimas intends to develop something similar for
#MECFS
.
a bit different than what i normally draw, but something about pressed flowers.. not really alive, not completely dead. lying still, remembering life
#LongCovid
#MECFS
Pacing is the absolute balls I had a few good hours yesterday and today working on a cute little thing and I just want to keep working on it and finishhhhh itttt arghhhhhhh RESTING IS TORTURE.
#LongCovid
#MECFS
ME Research UK is delighted to announce funding to Dr Zack Shan
@usceduau
for the world’s first controlled study directly assessing neuroinflammation in the brains of people with ME/CFS. Read more: More detailed description:
#MECFS
The Center for Infection & Immunity was launched at Yale, a serious effort to understanding the true, long term impact of infectious diseases - because this pandemic won't be the last
Very excited to launch the Yale Center for Infection and Immunity
@YaleCII
focused on unraveling the disease pathogenesis of post-acute infection syndromes and making effective vaccines to prevent infectious diseases.
#longCOVID
#MECFS
#chronicLyme
“In the short history of studying
#LongCovid
, this is probably the most hopeful moment we’ve ever had”
“Researchers are optimistic that breakthroughs are coming.”
@rhymeswithvery
@MZissis1
@Nnwwzz124
MECFS orgs = so ineffective that they haven't managed to push research forward but apparently so effective that they have infiltrated the government and every LC patient organization
Something that's striking to me about these psych angles on
#LongCovid
is that they seem to misunderstand psychology just as much, if not more than the biomedical
Imagine writing about a subject for the very first time in your entire life — & having the hubris to quote arguably the leading researcher in the field (
@VirusesImmunity
) & completely undercutting them with “ya but nah” in the very next line.
Pretty unreal
@grace_huckins
@slate
@VicGovDH
People should know that in many cases, "fatigue" = severe muscle weakness that you can't walk more than a few hundred steps, and "brain fog" = brain shutting down, loss of functions like reading, memory formation. Millions of people from 2020 overseas are still sick
Dr Carmen Scheibenbogen
"I really think that now the time is changing, and that we really can achieve the development of therapies pretty soon. My great hope is that, within the next few years, we will have therapies to treat most sufferers."
First paper from the NIH ME/CFS Intramural study
I know many pwME have a lot of feelings about this but as a newcomer - what it means to me to have a NIH-led study that presents antigen persistence, immune dysfunction and microbial dysbiosis as the pathophysiology of ME/CFS
Dr Avi Nath
“[In a year's time] I think we’re going to know a lot. There are so many labs working simultaneously and the NIH is dumping a lot of money into the RECOVER Initiative... There’s private money, philanthropy, industry. It’s just exploding”
“We're Going to Learn a lot" Avi Nath on the deep diving
@IRPatNIH
’s study on
#MECFS
interview by
@CortJohnson
As the data came in, he brought the groups together to take a crack at it. As each group interrogated their data in relation 👇🏻
Disappointing that 'cognitive training' is the only intervention listed here, when I've seen so many people improve their brain fog with other interventions (LDN, antihistamines, acetyl-l-carnitine, PEA etc). Not to mention how exhausting cog training is for someone w brain fog
'MRFF Post-Acute Sequelae of COVID-19 Research Plan'
This plan supports research investments under the Medical Research Future Fund (MRFF) to improve outcomes for people experiencing Post-Acute Sequelae of COVID-19 (PASC). PASC is also known as long COVID
Post-exertional malaise in
#longcovid
and
#mecfs
makes me so curious that in the depths of despair I thought I'm going to hang on no matter what just bc I want to be around when they figure out what tf it is.