@TheRealMcCoy aka Meghan
@RipperMD41
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874
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Chronically ill. Until we land on one, Instagram: @/RipperMD41, Mastodon: @RipperMD41 @disabled .social T2: same as here @rippermd41 .bsky.social
NH, USA
Joined October 2016
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@animoller
Had a teacher in middle school always mock the students for how much they used the word “like.”
So one day, as a class, we clapped every time he said “Um.” After about the 20th time, the point was made.
He stopped mocking us for our fillers and we let him have his.
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@RamseyHootman
Them creating the assignment: no one would think you have to literally do the exact assignment. They won’t even understand.
Autistic kids: umm 🤯
Teacher: Just do your best
🫠🫠🫠
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@CT_Bergstrom
“Since the wolf is no longer a problem, we don’t need to track our sheep anymore.”
“But what if it comes back? Don’t we want to know how many were bit?”
“The wolf only takes small nibbles now. Tracking the number of bites is scaremongering, most won’t die.”
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@CT_Bergstrom
“But what if the wolf brings another wolf? A wolf that does more than nibble?”
“Silly child, that’s not how these things work. Everyone knows wolves naturally evolve to become more domesticated the more sheep they eat.”
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It seems many don’t understand why this bland cookie cutter statement is upsetting to some of us.
Let’s break it down.
🧵
I have tested positive for Covid. My symptoms are minimal and I will continue to work from home in Vermont while isolating in accordance with CDC guidance. I am glad to be fully up to date with the vaccine.
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She was fine after her first 3 Covid infections.
The 4th gave her
#LongCovid
.
This is truly unsustainable.
Rising star of Australian ballet's horror 9-month battle with long COVID.
#LongCOVID
#COVIDisNotOver
Source:
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First to get it out of the way:
He’s isolating —> good
In accordance with CDC guidance —> 🫤
CDC guidance is inaccurate and does not follow the science. Many are still contagious past day 5 of illness.
(Side note: the 5 day rule was created to appease businesses)
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@IngrahamAngle
@trumps_feed
Welcome to Alabama
#37
in child and teen death rate
#39
in teen births
#42
in children concentrated in high poverty areas
#46
in child poverty overall
#47
in public health
#50
in education
#1
in forcing a child that’s been raped to deliver.
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@RamseyHootman
I am so sorry. This gave me flashbacks to school.
Trying to do everything perfectly, burning out through the process and only later realizing they wanted 25% of that effort.
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@sicc_bitch
I started on my path to disability in internship year. It’s extremely difficult to manage your illness/disability and complete your training.
I was never able to finish my internship year nor return to residency.
Most programs are not accommodating (the military even less so).
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@lesliiealatorre
My rheumatologist was the first to hold space that she might be wrong:
“I don’t see anything right now, but I can’t say for sure there’s nothing going on. Let’s keep checking in and maybe we’ll find some answers.”
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Which leads to the next point: sick days.
There is no requirement for employers to offer sick days in the US.
Given his large platform Sanders could use this as an opportunity to say he’s taking a few sick days and that everyone in the US should have that right.
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Continuing to work goes against the guidance of many Long Covid and ME/CFS experts.
There’s a common theme in these patients that the final straw is them overexerting themselves or trying to push through during/right after an acute infection.
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But what people are more upset about:
- “continue to work from home”
- only mitigation he mentions is the vaccine
- doesn’t mention the current Covid wave
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“But why is everyone so angry?”
Because they’ve been left behind and abandoned. Because Biden and the Democrats did not follow through on their promises.
The immunocompromised and high risk have been shut out from society. Your choice is catch Covid or stay home.
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@MrkStdngr
I’m so sorry. I don’t understand why people think anyone wants to be sick.
Factitious disorder is so incredibly rare, but everyone acts like it’s incredibly common.
I’ve yet to meet a single person with chronic illness who hasn’t had friends/family/doctors imply it’s psych.
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Sanders stating he’ll continue to work also normalizes this behavior.
We really love to “push through” here in the US, lest we be viewed as “weak.” But it’s not good for our health.
Many people don’t even have the option to work from home and can’t afford to take time off.
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I am pretty open with friends and family about my struggles with
#MECFS
, partially so my medical friends learn about it.
Can you guess my reaction to this note that was attached to a belated holiday card?
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So Sanders could’ve warned people about the current wave, but he chose not to.
He could’ve encouraged:
- Increasing ventilation
- Adding HEPA filters or Corsi Rosenthal boxes
- Wearing N95s indoors or in crowds, or to stop transmission to household members
But he chose not to.
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“But he’ll only be working on emails. It’s not like he’s running 🙄”
True, but there are more forms of exertion besides exercise.
Just ask anyone with ME/CFS or Long Covid. (It’ll take me a all day to write this thread.)
This is from the excellent pacing guide by
@MEActNet
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@ctrssierra
FFS 🤦🏻♀️ I am so sorry.
I hate how quickly docs jump to “it must be psychological” when really it’s just they don’t understand it.
Ask you friend to read these 10,000 articles to fully “rule out” everything then get back to you.
The LitCovid
#LongCovid
collection has just passed 10,000 articles. These are PubMed articles (not preprints) relevant to long-term symptoms caused by COVID-19, regardless of the terminology used by the author(s) to name or describe it
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Even healthcare isn’t accessible. People are getting sick and dying because of infections they picked up at their doctor’s office or hospital.
The general response from everyone in the establishment is 🤷🏻♀️
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Alright, moving on.
He emphasizes he’s up to date with the vaccine. That’s great! It can definitely decrease your risk of hospitalization.
He doesn’t mention any of the other mitigation measures though. The US reliance solely on vaccines and Paxlovid isn’t working.
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Kid doing homework:
Them: Ugh, this shirt is bugging me.
Me: Go change then.
T: Nah, I’ll just ignore it.
M: You’ll use brainpower to block out the sensation. It’s better to use that on the hw.
They go change and it’s the fastest I’ve ever seen them do hw.
#ActuallyAutistic
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@AutisticCallum_
When it’s all “normal there are often coping skills that get passed down through the generations.
Explaining social interactions and practicing them. Stopping movies to make sure your kid picked up the subtext. Helping your kid create scripts to start convos, etc.
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We need more research into this, but there have been indicators of this association between overexertion and post infectious chronic conditions for decades.
This came from a small study looking at ME/CFS in athletes almost 30 years ago.
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@myrabatchelder
The US should be having public health campaigns on “what to watch for” following a Covid infection.
Even just re-releasing pamphlets on signs of:
- strokes
- DVTs and PEs
- heart attacks
- asthma
would be a start.
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@the_tweedy
“You’re very thorough.”
“Looks like someone did their homework!”
“I could never be as brave as you…”
“Ask Meghan, I’m sure she can give you a thesis on it.”
😂😂😂 Ah the joy of the backhanded compliment.
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Long Covid patients especially feel abandoned. Their governments said it was fine to get infected. Many of them had “mild” acute infections and were previously healthy.
Thanks to Long Covid they’ve lost jobs, friends, families, homes, and so much more.
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How do I know it’s not working? Because we’re currently in the 2nd largest wave of the pandemic.
Millions more will develop Long Covid due to this wave and we still don’t have a treatment for it.
1/
PMC COVID-19 Tracker, Dec 25, 2023 (U.S.)
At peak surge, we will have 2 million U.S.
#COVID
infections/day.
Nearly 1 in 3 Americans will get infected during the peak 2 months of this winter surge. That’s 105 million infections & >5 million resulting
#LongCOVID
cases.
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I think all of this is made worse because it’s coming from a progressive who claims to support the labor and disability movements.
It’s frustrating to see him follow along with everyone else.
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They know all too well that if you get long Covid there isn’t some magic safety net.
There are no approved treatments.
Experts are few and far between (and often don’t take insurance).
There’s no financial support and the process to get disability benefits is grueling.
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@sicc_bitch
It’s possible, but a lot is dependent on when your disability hits and how much you’re willing to suffer.
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Still no one in power does anything to mitigate infections.
This is damaging our healthcare system and will continue to damage our economy unless we acknowledge the problem and deal with it.
The current method of pretending it’s just a cold isn’t working.
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Because they’ve been abandoned Long Covid patients also pay close attention to the science.
Every week more and more papers come out that detail all the destruction Covid can wreak on your body.
The chronic affects of this virus will impact us for decades.
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@helaineolen
Since I’m immunocompromised and the rest of the world does not care about people like me at all
…I’m safer at home.
And honestly when I push for ventilation, filtration, etc. I usually get told “well if you’re so scared you should stay at home.” 🤷🏻♀️
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@FeralHeather
@SFdirewolf
I had big red signs above my bed saying: allergic to latex and iodine. It’s been on bright red allergy bracelets.
I stopped counting how many times they ignored the signs.
It’s exhausting when you’re ill having to constantly police healthcare providers.
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@bennessb
It’s okay to be the “difficult patient.” The medical system stinks, and you need to advocate for yourself.
If you don’t feel like you can advocate for yourself, find a family member or friend who will and bring them to your appointments.
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CW:
This 🧵 mentions suicide, euthanasia, medical neglect.
And anger. Lots and lots of anger.
#MECFS
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Given the overlap between
#hypermobility
#EDS
and
#MECFS
as well as the overlap with ADHD and autism…
there must be a lot of us with
#MECFS
and
#LongCovid
that are
#ActuallyAutistic
#ADHD
Are there any resources out there for us?
Laying in bed, doing nothing is so SO hard.
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@chronicallyaves
It is really difficult to explain to people that sometimes I don’t even have the energy to write a text.
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Oops, forgot to add the link to the pacing guide
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More on the importance of rest during illness
This is a big deal: adequate rest in the early weeks was protective against a more severe
#LongCOVID
category (measured by fatigue, ability to work, care for self, etc).
Also! Higher income was protective against ending up in this category as well. 2/
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@ellle_em
Yikes.
No acknowledgement of trying to figure out what’s causing the “tough times” or helping him through it.
Also, the “less motivation” stands out. That is the phrase my ADHD family members frequently use, and they often have to rely on procrastination to overcome it.
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@FoxNews
Have you watched some of your Covid coverage? Especially vaccine coverage?
90% of your employees are vaccinated but yet your primetime hosts keep pushing conspiracy theories with the vaccines.
“We don’t want to die from Covid, but we think our viewers should.”
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@EdoajoEric
Too many of my docs thought they were being “reassuring.” They often had the false impression I felt worse because I was anxious about something 🤦🏻♀️
I recommend always checking in and asking if they’re still having symptoms. No answers when you feel terrible is not reassuring.
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If you guessed something like this 👇
you are correct.
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@isaiah_bb
If you really want to be shocked, ask every doctor you meet if they learned about infection associated chronic conditions like
#ME
/CFS in medical school.
ME/CFS is at least 3 times more common than MS, guess which one I learned about in med school and which one I didn’t?
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@AbraarKaran
The government should’ve also started an indoor air quality grading system.
I need info to know what places are safe to visit if everyone will be unmasked.
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@beachweeds
@bibicosplays
It’s impossible to get our kid to eat in the morning. The doc was like “maybe we can get in a healthier breakfast.”
I had to point out that either they eat pop tarts or donuts or they just skip breakfast (and skipping meals triggers migraines, the reason they see the doc.) 🤦🏻♀️
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@bennessb
Resting does not mean you’re lazy.
Not meeting your pre-illness goals doesn’t mean you’re a failure.
You don’t need to “overcome” your illness (like the inspiration porn our society loves.)
Find comfort and happiness where you can. Your productivity does not equal your worth.
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@ErinInTheMorn
Thank you for this! I can’t even begin to express how much this has made Zero’s week.
They know all the ignorance and hate out there, but to have a moment when they see all the love is so wonderful!
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But what I will never accept, what I cannot accept, is a medical system that perpetuates this continued harm on patients.
I am grateful for everyone both within and outside the system that fights against it.
#MECFS
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@DiaryofaSickGrl
@SnoozyWeiss
She contacted me too. I remembered her name from other articles and had a feeling it would turn badly so I declined.
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Imagine if there were simple things we could do in schools to:
- decrease staff and student absences
- improve cognitive performance
- avoid chronic executive dysfunction
We don’t have to imagine. They already exist.
#COVIDisAirborne
#BackToSchool
#CleanAirCrew
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@choo_ek
I have ME already (yay EBV) and MCAS and dysautonomia (yay Ehlers Danlos) and my friends do not understand why we’re so afraid of Covid.
Common refrains: we’re “over- cautious” and “you can’t live your life in fear.”
Thanks friends, I just don’t won’t to live my life in misery.
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@ItsEmilyKaty
My special interest was books so they labeled me as “gifted” and just assumed any social difficulty was because I was gifted…
It’s a nice self fulfilling prophecy.
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@Daisy_Patton
I suggested this recently and the responses were dumbfounding:
- masks don’t work
- just double mask
- get a P100 “if you’re so scared”
- “what did you do before Covid?”
That last classic that shows how oblivious they were pre-pandemic, many of us did take precautions.
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@cmclymer
It drives me nuts that so many have created this culture of military worship with their clothes, and music, and stickers all over their trucks, but then you find out they’ve never served, no one in their family has served, none of their distant relatives, not even friends.
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@the_tweedy
I need to know all the things. Not sure why, but I do.
Smartphones are great because you can instantly answer “huh, why does that happen.”
Stuff like what’s the difference between a pidgin language and creole. Not something I needed to know, but now I know.
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@StephTaitWrites
That article made me want to scream.
“Admissions for covid are down.” They stopped testing people, stopped masking, no one is tracking hospital acquired infections.
“For most it’s a mild illness.” Overlooking the 1 in 10 that get Long Covid. 🤦🏻♀️
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@myrabatchelder
Then adding: POTS/dysautonomia, post-exertional malaise, MCAS, mental health changes, kidney damage, insomnia, etc.
Is any organization outside of govts doing this? It’d be great to have something for people to use as a resource after infection.
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@ellle_em
OP is definitely NTA.
I wonder if the difference in opinion on this breaks down along NT and ND lines.
But if I know my kid doesn’t handle change well (and is being evaluated for autism) then I do something that causes a big change…that’s on me.
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@Craig_A_Spencer
All we have to do is look around.
Our current approach to Covid as well as our complete surrender to nosocomial respiratory infections is modern day eugenics.
After all, if you have pre-existing conditions it’s okay if you “fall by the wayside.”
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I am truly hoping they didn’t read my personal narrative on
#MECFS
Because if they did and still had the audacity to call it “fatigue.”
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@hankgreen
Yeah, I have ME/CFS and use my watch with Welltory to limit my exertion.
It’s constantly giving me fun messages like “Don’t delay, hit the hay” or “self care and chill,” when all I’ve done is refilled my water bottle.
This is probably my fav though 😂
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Thank you
@zalaly
for wearing a mask while testifying about the importance of preventing Covid!
“The best way to prevent Long Covid is to prevent Covid.”
I love his energy right now.
#HELPLongCovid
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On this
#MEAwarenessDay
some quick stats:
WHO: 1 in 10 chance of
#LongCovid
Half of people with LC qualify for
#MECFS
diagnosis
1 in 4 with ME are housebound/bedbound.
There is no treatment for ME. We need help as our numbers grow.
#MillionsMissing
#StillSickStillFighting
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I know they meant well.
I should be grateful they’re still trying to hang out. Many friends just drop you when you become chronically ill.
But apart from the general frustration at ME being minimized to “fatigue,” this is the other piece 👇
@resist_breathe
I think they did mean well. It’s just a double gut punch.
First, they’re a doctor, but I know how crappy med ed is on ME.
Second, they knew enough to know I’ve been posting about life with ME, but not enough to read what I wrote about it.
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Real video of me trying to educate my medical friends 🤦🏻♀️
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It’s rare to see “but they have so much to live for.”
The harsh reality is they’re stuck in a painful prison partially designed and fully perpetuated by our healthcare systems.
#MECFS
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@commaficionado
There may be people in your life that don’t know they’re autistic until much later in life. They may have masked early on or been misdiagnosed.
I’ve known since I was 4 that I was different, but didn’t know why. I can socialize well, but it takes a lot of mental effort.
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@05c4rXr4y
@arseblog
@FA_PGMOL
Apparently the officials don’t realize the forearm is part of the arm 🤦🏻♀️
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I thought this might give you some perspective
@JonFavs
From the earliest days of the Covid pandemic, people with
#MECFS
sent out warnings that there would be a large wave of a post-Covid condition like
#MECFS
But no one listened.
#PodSaveJon
@MeghanMcCain
Meghan, I’d love to speak w/u on behalf of
@MEActNet
AZ &
@PlzSolveCFS
re the scary but real estimate that 10% of people—mostly women but also young people—who recover from coronavirus will get post-viral
#MEcfs
& be disabled for the rest of their lives.
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@StephTaitWrites
@kingdomofwench
I have the same fear. Not just of me getting sicker or dying, but my kid thinking it’s their fault. My kid is also at increased risk for Long Covid and an autoimmune disease because of my genetics.
I wish I lived in a different country.
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@ADDeeCee
@GeraintWorks
That is the pattern for me. My husband always has to check before grocery shopping.
“Are you still in your Lucky Charms phase?”
“Nope. We’re entered the time of bagels.”
(That is until the cream cheese skeeves me out and they’re banned for years 😂)
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Yet another person with Myalgic Encephalomyelitis (ME) left this earth.
I’ve lost track of how many that is now. The posts appear every week or two. This person died by suicide. That person is setting a date for euthanasia.
#MECFS
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@adamfare1996
I wish we taught kids what it’s like to be autistic or ADHD, but it’s difficult when even the adults don’t have a firm grasp on it.
Everyone looks for the external signs, but autism and ADHD can really be about how the internal process works.
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@anildash
I love etymology, but my superpower is I can find almost anything interesting.
Conversation with my kiddo yesterday:
Me: I’m curious why it’s like that. I wonder how that started..
Kiddo: Yes, yes we know <exasperated sigh> you’re curious about everything.
😂😂😂
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@RebecaLares2
@neilhimself
Not sure what book you read but GOOD Omens is identical to the tv series.
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Instead it’s:
We are holding you in love.
I wish you peace.
I hope your parting is peaceful.
You will be missed.
Thank you for your brave voice.
#MECFS
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This is what life with
#MECFS
is like.
I spend most of the day in the dark, listening to audiobooks.
And I feel incredibly grateful I can do that because I know there are many more with ME that can’t.
#SevereMEAwarenessDay
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Followed by:
Our medical system has failed you.
I am so sorry that our society and medicine push us to make such a final choice.
How terrible it’s come to this.
#MECFS
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@ellle_em
Also, it’s classic that they’re assigning beliefs to her behavior.
She tells them she’s upset because of the change, they see her upset and assume she’s ungrateful. 🤦🏻♀️
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@StephTaitWrites
Thank you for putting this into words. It’s beyond frustrating.
The worst part is the kids. I don’t mind losing experiences myself. But I hate seeing my kid denied the chance because people won’t take basic precautions in a pandemic. It’s not fair to them.
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@JolentaG
One of the good things about social media is that I have a clear idea of what they mean by “careful.”
“Oh, we’ve been really careful with Covid too…”
Flipping through their SM: indoor concerts, indoor dining, extensive travel, large indoor unmasked parties…
Careful 🫠
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A system that would rather harm patients for the convenience of clinicians than provide care and assessment effectively at home.
A system unwilling to fund research proportional to disease burden for DECADES.
#MECFS
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Him: ME is all psychological!
Us: Here are multiple papers showing physiological differences. Also it’s
been grossly underfunded for decades.
Him: You’re bullying me!
Us: By challenging your belief with scientific evidence?
Him: Bullies!
Muted this yesterday, the legions calling me names got old quickly. Worth saying again: there is no known disease pathology in ME/CFS, only symptoms.
Now, It's entirely valid to explore pharmacological routes to treating those symptoms for people who are suffering, but it
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A system that doesn’t even teach about the condition in medical school despite affecting as many as 1 in 100.
A system designed to reward procedures like colonoscopies and not the lengthy assessments required for complex chronic illness.
#MECFS
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@renudhinakaran
I had the same problem. Took them years to believe me that I had arthritis. I was stiff (for me) but I looked like I had a normal range of motion.
They knew I had hypermobility but it took them forever to go “Oh, this might change what we see on exam.” 🤦🏻♀️
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To have
#MECFS
is to suffer.
“Mild” illness is painful and debilitating.
As you sink deeper and progress to moderate you find only more loss and more agony.
Plunge further and you begin to understand why many score their quality of life as “worse than death.”
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@MarisaKabas
It is infuriating. People minimized it at the start “oh it’s just a cold, not like it will kill me, what’s the worst that could happen?”
While talking to me, someone immunocompromised.
My kid has been so limited in what they can do these past 2 years.
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A system that too often is wrapped up in the prestige of academia and countless egos unable to admit they’re wrong.
I’m looking at you BPS, CBT, GET and FND.
#MECFS
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@manic_femme
The irony in all of this is that these policies and shortages could create more substance use disorder 🤦🏻♀️
There’s been evidence to suggest that appropriate treatment of kids with ADHD meds may prevent SUD.
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