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Reposted by The Real McCoy

darth™️ @darthbluesky.bsky.social · 13h

i am not saying the world has gone completely bonkers but
the world has gone absolutely completely bonkers

Danny K @dannykpolitics.bsky.social · 3d

WATCH: ‘Portland Frog’ pepper balled by ICE agents

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The Real McCoy @rippermd41.bsky.social · 11h

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.

Conrad Hackett @conradhackett.bsky.social · 1d

Has anything great happened in your life because of social media?

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Reposted by The Real McCoy

jamelle @jamellebouie.net · 21h

i desperately want everyone involved in the destruction of USAID to have to, st the very least, answer to the american people for the suffering and misery they have caused apnews.com/article/myan...

Starving children screaming for food as US aid cuts unleash devastation and death across Myanmar

U.S. Secretary of State Marco Rubio has repeatedly said “no one has died" because of his government’s decision to gut its foreign aid program.

apnews.com

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Wilhelmina Jenkins @wilhelminaj.bsky.social · 12h

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.

MedPage Today @medpagetoday.com · 15h

"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

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Reposted by The Real McCoy

George Monbiot @georgemonbiot.bsky.social · 1d

Just as we are beginning to understand the biochemical basis of this horrendous condition, the government appoints the man perhaps most responsible for the mischaracterisation of ME/CFS – Simon Wesseley - to its *overdiagnosis* commission. www.benefitsandwork.co.uk/news/controv...

Controversial professor to investigate overdiagnosis of mental health and neurodivergence for Labour

Get the benefits you're entitled to: help with personal independence payment (PIP), universal credit (UC), employment and support allowance (ESA),disability living allowance (DLA). Claims, assessments...

www.benefitsandwork.co.uk

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The Real McCoy @rippermd41.bsky.social · 1d

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.

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The Real McCoy @rippermd41.bsky.social · 1d

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.

The Real McCoy @rippermd41.bsky.social · 1d

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 👇

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Reposted by The Real McCoy

Kelly @broadwaybabyto.bsky.social · 1d

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

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The Real McCoy @rippermd41.bsky.social · 1d

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.

The Real McCoy @rippermd41.bsky.social · 1d

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

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The Real McCoy @rippermd41.bsky.social · 1d

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 👇

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The Real McCoy @rippermd41.bsky.social · 1d

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.

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The Real McCoy @rippermd41.bsky.social · 1d

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.

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The Real McCoy @rippermd41.bsky.social · 1d

It’s difficult but if you can, absolute rest might help.

These are pacing guides developed for ME/CFS and Long Covid. Don’t know if you’re having issues with other types of exertion besides cognitive exertion but you want to as much as possible. Then pace ie alternating activity with rest.

PACING & MANAGEMENT GUIDES | #MEAction

Find #MEAction's original Pacing Guide and Pediatric Pacing and Management Guide for ME/CFS and Long COVID, with translations.

www.meaction.net

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The Real McCoy @rippermd41.bsky.social · 1d

Severe #MECFS is shit but it’s hard to imagine how much worse it can get.

I can risk exertion right now to distract myself from pain. Probably shouldn’t, but I can.

But with Very Severe ME there is no choice. You lie in dark silence with only your thoughts and the pain for company.

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The Real McCoy @rippermd41.bsky.social · 1d

One of the things* I hate about #MECFS is you lose the tool of distraction when it comes to pain.

Because distractions (video game, tv, book etc) cost energy.

I’m hovering at a crash. I should be lying still and doing nothing.

But I need a distraction so here I am on social media.

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The Real McCoy @rippermd41.bsky.social · 1d

Never fails. Pain is always at its worst when I need to sleep 🤦🏻‍♀️

#PsoriaticArthritis + #HSD + #CRPS + #MECFS is a shit combo.

I feel like a giant ball of pain and my entire spine is messed up 🫠

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The Real McCoy @rippermd41.bsky.social · 1d

I take Aimovig monthly which reduces the headaches a bit then it’s ibuprofen, sumatriptan, my ice cap, and eye massager.

I’ll also use a neck cushion to give my spine a break. I find muscle tension and misalignment of my neck always makes the headache or migraine worse.

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The Real McCoy @rippermd41.bsky.social · 1d

The above quote from Monbiot comes from his article on #MECFS

It’s a scandal now impacting #LongCovid patients as many of them develop ME as part of their LC.

www.theguardian.com/commentisfre...

‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal | George Monbiot

The notion that this illness is psychosomatic is having devastating effects, says Guardian columnist George Monbiot

www.theguardian.com

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The Real McCoy @rippermd41.bsky.social · 1d

Simon Wessely is a key figure in what @georgemonbiot.bsky.social called “the greatest medical scandal of the 21st century.”

He helped destroy the lives of millions of #MECFS patients around the globe.

Now the UK govt want him deciding if mental illness and neurodivergence is “over diagnosed.” 🤦🏻‍♀️

Adam @abrokenbattery.bsky.social · 2d

Simon Wessely — the controversial psychiatrist once dubbed “Britain’s most hated doctor” has been appointed vice chair of Labour’s review into overdiagnosis of mental health and neurodivergence.

www.benefitsandwork.co.uk/news/controv...

Controversial professor to investigate overdiagnosis of mental health and neurodivergence for Labour

Get the benefits you're entitled to: help with personal independence payment (PIP), universal credit (UC), employment and support allowance (ESA),disability living allowance (DLA). Claims, assessments...

www.benefitsandwork.co.uk

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The Real McCoy @rippermd41.bsky.social · 2d

Ideally it shouldn’t be transactional like that.

But this is the situation we’re stuck with due to a failure of public health.

They’re high risk for #LongCovid
and knowing the hell that is Severe #MECFS we’ll protect them however we can.

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The Real McCoy @rippermd41.bsky.social · 2d

Honestly I debated about the ethics of having them use a valved mask.

But for the past 2-3 years they were the only one that masked at their school.

Them continuing to mask, even with a valve, is still protecting their classmates more than their classmates ever protect them.

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The Real McCoy @rippermd41.bsky.social · 2d

I was right.

Zimi mask was the winner based on comfort and appearance.

I also liked that we could get valved and unvalved filters.

The Real McCoy @rippermd41.bsky.social · Sep 8

Our plan is to find a bunch of masks for our teen and hope one works 🤞🏻

I think the valved zimi might be the winner but it’ll take a while to get here.

Any suggestions on valved earloop masks (KN95 or KF94) that might take less time to get to the US?

The Real McCoy @rippermd41.bsky.social · Sep 8

I need help from the masking and Covid aware community.

My teen is having sensory issues with masking, specifically sweating.

They’ve masked ever since they went back in person, but their sensory issues are worse lately.

Any suggestions? Types of masks that are better?

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The Real McCoy @rippermd41.bsky.social · 4d

I agree with Sparrow and C.H,

I know we try our hardest to stay out of doctors’ offices but this is something I’d get evaluated if you can.

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The Real McCoy @rippermd41.bsky.social · 4d

God I feel this. I was a decent writer pre-ME, not because I’m a good writer but because I’m a good editor.

And now editing is one of the fastest ways for me to trigger PEM.

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