The Real McCoy
@rippermd41.bsky.social
2K followers 900 following 1.3K posts
My life runs by the Murphy’s Law of illness: If something can go wrong, it will go wrong. Latest one is #MECFS but the laundry list is long. Live in New England
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rippermd41.bsky.social
New followers here’s an intro on me and what I post about:

I have #SevereMECFS and am housebound. (It sucks)

I have an MD, but don’t practice medicine. Other health problems took me out during residency. (Seriously, my life follows Murphy’s Law)
Reposted by The Real McCoy
napaaqtuk.bsky.social
Most of rural Alaska is Alaska Native. Bonus donating to support Alaska Native people on Indigenous Peoples Day.
napaaqtuk.bsky.social
Western Alaska was hit hard by the recent storms. Houses floated away in Kipnuk, houses flipped over, people lost everything from the flooding that came with the storms. Please donate if you can. This group has a long history of supporting AK communities.

alaskacf.fcsuite.com/erp/donate/c...
Reposted by The Real McCoy
napaaqtuk.bsky.social
I am seeing a lot of people reposting Lakota Man today bc it's Indigenous Peoples Day. A reminder that he is not well liked amongst many (most?) Natives on social media. Many of us blocked him a long time ago. Some of the reasons why are in this article.

www.dailydot.com/irl/lakotama...
Who is LakotaMan, the user behind one of the most popular Native American accounts on X?
John Martin is adored by white X users—but infamous among Native and Indigenous communities.
www.dailydot.com
Reposted by The Real McCoy
carlbergstrom.com
Thankfully, some of yesterday's CDC firings have been rescinded.

But this should be a major scandal, not business as usual in this shitshow of an administration. It's either spectacular incompetence or an effort to make even politically untouchable positions feel precarious to those in them.
helenbranswell.bsky.social
100s of #CDC employees were notified Friday they were being fired — RIF'd. The firings cross multiple parts of the agency, endangering its core mission of keeping Americans safe.
Saturday, some were informed they were RIF'd in error.
Hard to imagine how this happens www.statnews.com/2025/10/11/c...
CDC battered by government shutdown firings, while some are rescinded
The White House’s mass firing of CDC staff on Friday has decimated offices related to injury prevention, respiratory disease surveillance, and chronic disease, according to four people familiar with t...
www.statnews.com
Reposted by The Real McCoy
katelynburns.com
I wrote a little about some of the little details you might have missed in this video and why it hit me so hard as a trans person this morning:

www.burnsnotice.com/you-have-to-...
rippermd41.bsky.social
BTW I say recovered* because it’s actually remission. You’ve gone into remission from #LongCovid. It can come back.

The #MECFS community knows this all too well.
rippermd41.bsky.social
This isn’t the first person with #LongCovid I’ve seen have this response.

They want to live their life “fully.”

I honestly can’t imagine seeing how bad LC and #MECFS can get, then going “nah, I’ll risk it again. I’ll be fine.”

To each their own.
rippermd41.bsky.social
Just saw someone say they’re fully recovered* from #LongCovid.

That’s great!

Someone with #MECFS congratulated them then cautioned that it can come back with reinfection so to take care.

They responded: they don’t want to live their life in fear so they’ll be using zero mitigations.

😶
Reposted by The Real McCoy
vashetc.bsky.social
Do you all think it’s inhumane to leave people rotting in bed (literally, not metaphorically)? Im talking about people who cannot tolerate light and sound, and maybe even touch. People who can’t drink or chew on their own. For decades.

If so then you should look up Myalgic Encephalomyelitis.
Reposted by The Real McCoy
hazie.bsky.social
“If we assume, conservatively, that it takes 12 to 15 years to develop acceptable therapeutics for Long COVID, and then another 18 years for them to reach clinical practice, people my age — and yours — will have passed before they get help. We need to accelerate this.”
thesicktimes.org
A group of 53 people with #LongCOVID joined a clinical trial for Vyvgart. For many of them, the treatment changed everything.

Then, without warning, Argenx canceled the trial.

Most of them have now relapsed.

They're calling on the NIH and HHS to study the drug: bit.ly/48l1Qp5
A photo Nicole Barrick, a woman in a pink KN95 mask, receives an infusion of Vyvgart. The text reads, "The Sick Times. Vyvgart brought us back to life, but the Long COVID trial was canceled. We are calling on the NIH and HHS to study the drug. By Clare Banaszewski, Nicole Barrick, Mike Bilik, Addie Davis, Mia Delli Gatti, Ellie Hayes, Roman White." "For those living with Long COVID, every ounce of hope is hard-won. This isn’t just about physical symptoms. It’s about the emotional toll of being given hope — and then having it taken away." - Vyvgart clinical trial participants
 Clare Banaszewski, Nicole Barrick, Mike Bilik, Addie Davis, Mia Delli Gatti, Ellie Hayes, Roman White
Reposted by The Real McCoy
jessothomson.co.uk
It cannot be made clearer.

If you continue to support the Harry Potter franchise in any way, you are directly funding the removal of trans people's human rights in the UK.
JK Rowling pledges to keep up fight against SNP trans policies

Author vows to bankroll campaigners after Scottish government fails to pay group's legal fees in Supreme Court equality case
rippermd41.bsky.social
I’m autistic and I was trying to explain this to my autistic teen. They didn’t understand why people can be so gloom and doom about autism.

I showed them the “I Am Autism” commercial from Autism Speaks.They treat a neurotype like it’s a serial killer.

youtu.be/9UgLnWJFGHQ?...
I Am Autism commercial by Autism Speaks
YouTube video by Find Yaser
youtu.be
rippermd41.bsky.social
Realized I mostly notice the passage of time because of my supplement organizers.

When every day is the same, it’s hard to know it’s Thursday.

#MECFS #NEISvoid
Color photograph of 2 large supplement organizers. One is purple and blue (blue side isn’t visible in this photo) and one is rainbow colored. Both are empty except for Thursday and Friday. The organizers are sitting on a grayish purple sheet.
Reposted by The Real McCoy
darthbluesky.bsky.social
i am not saying the world has gone completely bonkers but
the world has gone absolutely completely bonkers
dannykpolitics.bsky.social
WATCH: ‘Portland Frog’ pepper balled by ICE agents
rippermd41.bsky.social
I learned how to protect my family from an airborne pandemic thanks to social media.

5 years in and zero infections (that we know of) so far.
conradhackett.bsky.social
Has anything great happened in your life because of social media?
Reposted by The Real McCoy
wilhelminaj.bsky.social
An excellent article by Laurie Jones, executive director of @meaction-mi.bsky.social, about the difficulties that proposed Medicaid work requirements would cause the ME/CFS community.
medpagetoday.com
"There is nothing beautiful about shifting the burden onto those least able to bear it. But this is precisely what our nation is now poised to do."

ME/CFS and long COVID advocate Laurie Jones writes on Medicaid work requirements. https://www.medpagetoday.com/opinion/second-opinions/117839?trw=no
Opinion | Medicaid Work Requirements Will Devastate People With Invisible Disabilities
ME/CFS and long COVID patients must qualify as 'medically frail'
www.medpagetoday.com
rippermd41.bsky.social
A fun part (for me) of #MECFS is trying to pinpoint the area of my brain that’s struggling based on my symptoms.

Latest is phonemic aphasia. I unintentionally replace a word with one that sounds similar. For example “gold” when I meant to say “coal.”

Location? Possibly the external capsule.
rippermd41.bsky.social
Forgot to tag #MedSky

Want to learn how to help your patients with #LongCovid and/or #MECFS?

Check out these monthly sessions.

I guarantee you’re seeing patients with ME/CFS.

NIH estimates for every 22 Covid infections, one will develop ME/CFS.

But the vast majority go
undiagnosed.
rippermd41.bsky.social
Their first session was today and it focused on chapter 1 of their clinical care guide for #MECFS #LongCovid and #IACC.

The sessions will review a new chapter each month.

Looks like it could be a good resource to share with your health care providers.

And yes they’re recording them.

More info 👇
Reposted by The Real McCoy
broadwaybabyto.bsky.social
AI data centres are gobbling up environmental resources.

Billionaires are flying around on private jets.

Endless amounts of money & resources spent on wars around the globe.

But inhalers are the real threat to the climate?

They really will blame disabled people for everything
Screenshot of a post from local 12 WKRC TV which reads “inhalers contribute significantly to global warming study finds” and then a photo of two blue inhalers
rippermd41.bsky.social
Tip for #MECFS patients:

When evaluating new resources for healthcare providers I always read the section on PEM first.

If they can’t get PEM right I know I can’t trust the resource.
rippermd41.bsky.social
The Bateman Horne Clinical Care Guide for #MECFS #LongCovid and #IACCs is linked below.

I haven’t had the energy to read through the whole document yet, but what I read so far is solid.

Their section on PEM is the best I’ve seen.

batemanhornecenter.org/clinical-car...
batemanhornecenter.org
rippermd41.bsky.social
Their first session was today and it focused on chapter 1 of their clinical care guide for #MECFS #LongCovid and #IACC.

The sessions will review a new chapter each month.

Looks like it could be a good resource to share with your health care providers.

And yes they’re recording them.

More info 👇
rippermd41.bsky.social
Jaime Seltzer is an excellent resource, saw she offered to DM.

There are ways to modify work to reduce the cognitive load.

Example: I can’t read books anymore but if I listen to audiobooks at 0.75x speed, low volume, low or no light, only listening with one ear, it reduces my exertion.
rippermd41.bsky.social
Long Covid and ME/CFS patients often find that those that rest early do better.

I have severe ME/CFS and I got here because I continued to push through my body’s warnings.