Lightnews — Scholar-powered news

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

I really don’t know. I am brutally honest on my FB account with friends and family. I try to paint a picture of just how bad it can get.

It’s not fair that we’re doing this to anyone but least of all to kids.

But a role of a 20 sided die doesn’t faze them. Surely it’ll never come up 1
🙄🤦🏻‍♀️😔

1 2

Reposted by The Real McCoy

PZ @itsmepz.bsky.social · 1h

How can we get people to become conscious of the fact that

there is a disease that they don't know exists

that will absolutely destroy your life,

help is nonexistent and

you'll be screaming into an abyss for the rest of your torturous life if it takes you down

by a roll of the dice.

#MEcfs

The Real McCoy @rippermd41.bsky.social · 12h

There’s also #MECFS

1 in 22 covid infections will go on to develop ME, a condition with one of the worst qualities of life.

Only 25% of us can work.
The severest are too sick to leave their house and/or bed.

The absolute worst are tube fed, unable to tolerate light, sound or touch.

1 1 5

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

There are reports of people getting knock off supplements on Amazon and Walmart.

If Amazon is your only option, pay close attention to the packaging.

#MECFS #LongCovid #IACCs

How to Avoid Buying Counterfeit Supplements Online - ConsumerLab.com

ConsumerLab explains how to avoid counterfeit vitamins and supplements when shopping online on Amazon, Walmart.com, and other sites. Learn to identify authorized sites and sellers and avoid fake suppl...

www.consumerlab.com

1

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

Yet another absurdity of #MECFS and other #IACCs

Ostracized so much by our own medical system we’re forced to rely on unregulated supplements for relief.

Now there’s lead in the protein powder and god knows what in the Amazon knock off supplements 🤦🏻‍♀️

The Real McCoy @rippermd41.bsky.social · 9h

FYI for #MECFS and #LongCovid communities

If you use any protein powders, worth taking a look through this.

I’ve seen some people mention using Huel. Huel Black edition was one of the worst offenders.

paris martineau @paris.nyc · 12h

my latest investigation for @consumerreports.org is based on months of reporting and 60+ lab tests of leading protein supplements

we found that most protein powders and shakes have more lead in one serving than our experts say is safe to have in a day (🧵)

www.consumerreports.org/lead/protein...

1 3

Reposted by The Real McCoy

Tom Kindlon @tomkindlon.bsky.social · 4h

(MA, US)
Participants sought for LIFT (Life Improvement Trial) Clinical Trial at Brigham & Women's Hospital (BWH) that is being funded by the @openmedf.bsky.social

clinicaltrials.gov/study/NCT063...

Screenshot from Massachusetts ME/CFS & FM Association October newsletter

#MEcfs #PwME #CFS

LIFT (Life Improvement Trial) Clinical Trial at Brigham and Women's Hospital (BWH)

Dr. David Systrom at BWH, with support from the Open Medicine Foundation, is conducting a clinical trial on the effectiveness of low dose naltrexone (LDN) and/or pyridostigmine (Mestinon) for improving the quality of life for people with ME/CFS.

You may be eligible to participate if you live within 100 miles of Boston, are between the ages of 18 and 70, had the onset of symptoms before 2023, and have a smartphone. The trial will take about 3 months and involves 3 visits to BWH for testing, 4 virtual visits and using a wearable activity tracking device. Compensation of $300 is available. More details here. Contact jsquires1@bwh.harvard.edu if you are interested in participating.

2 2

Reposted by The Real McCoy

Tom Kindlon @tomkindlon.bsky.social · 4h

(MA, US)
MAESTRO Study Seeking Participants

talresearchgroup.mit.edu/mitmaestro

Screenshot from Massachusetts ME/CFS & FM Association October newsletter

#LongCovid #Lyme @immunofever.bsky.social

MAESTRO Study Seeking Participants

The Tal Research Group at MIT — headed by Dr. Mikki Tal and home of our Annual Meeting's guest speaker, Beth Pollack — is conducting the largest clinical study in MIT's history. The MAESTRO study aims to increase our understanding of the base causes of chronic infectious illness. The study is ongoing, and they are still seeking participants who have Long COVID, acute or chronic Lyme disease, and healthy controls.

If you are interested in participating in this study, you can find more information here.

2 4

Reposted by The Real McCoy

#MEAction Network @meactnet.bsky.social · 13d

Stellar new work from @grachstephanie.bsky.social, @exceedhergrasp1.bsky.social, @batemanhornecenter.bsky.social's Bell and Yellman & @raviganeshmd.bsky.social in the Elsevier text 'The Scientific Basis of Fatigue'! The book has chapters on #MECFS, COVID, Parkinson’s, stroke, and multiple sclerosis.

Text-based graphic with one photo. Text: New publication. Managing myalgic encephalomyelitis/chronic fatigue syndrome: a new narrative. a chapter in a new Elsevier textbook written by coauthors from #MEAction, Mayo Clinic Rochester and the Bateman-Horne Center. “I was honored to co-author this chapter with colleagues from Mayo Clinic and the Bateman-Horne Center to give clinicians and researchers the tools they need to better recognize, study and treat ME/CFS.”
Jaime Seltzer,
Scientific Director, #MEAction
Photo: Jaime Seltzer (white woman with long, dark hair) wearing glasses and cream blazer and red top slightly smiling.

5 23 51

Reposted by The Real McCoy

Julia Métraux @juliametraux.bsky.social · 4h

Some of us are truly only functioning due to medications working just enough, but even mild Long Covid can be the straw that breaks the camel's back.

Matthew Cortland (they) @matthewcort.land · 8h

It’s really disheartening to see people who admit this regime is doing eugenics fail to understand the ways in which chronically ill, disabled, and immunocompromised people are just absolutely fucked by Long Covid

2 8 66

Reposted by The Real McCoy

C.H. Romatowski @chromatowski.bsky.social · 4h

I hesitate to elevate this comment—IME people aware of how uninformed it is are in the majority on Bsky—but worth observing that this coming from eg the NYT opinion page is part of why RFK has an opening to pretend to be better on Long Covid than liberals. They’ve made the bar that low.

Post from jamelle
@jamellebouie.net
Account Muted

(and i think it is a demand that stems from fear more than a rational assessment of the threat environment)

October 14, 2025 at 5:06 AM

5 8 41

Reposted by The Real McCoy

Skyla Dawn Cameron @skyladawn.ca · 5h

I just want to add that for people on immunosuppressants, catching covid (or many other things) means they're often directed to stop taking their medication so they can fight off the virus. This risks a relapse of their condition and introduces a host of complications in addition to the covid ones.

The Real McCoy @rippermd41.bsky.social · 12h

To you, getting covid may be no big deal.

But thanks to a failure in public health you have no idea who or what you’re risking.

Repeat covid infections are really bad for those with Long Covid.

Did you know that Black, Latino and Native American communities are at highest risk for Long Covid?

1 14 35

Reposted by The Real McCoy

Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic.bsky.social · 8h

Cognitive and mental health outcomes in long covid
Rapid Response: Research must consider Post Exertional Malaise as a neurological event underpinning fluctuating cognitive dysfunction in Long Covid
www.bmj.com/content/390/...

Excellent letter by Dr Selina Shaw

Research must consider Post Exertional Malaise as a neurological event underpinning fluctuating cognitive dysfunction in Long Covid

www.bmj.com

6 11

Reposted by The Real McCoy

Matthew Cortland (they) @matthewcort.land · 8h

It’s really disheartening to see people who admit this regime is doing eugenics fail to understand the ways in which chronically ill, disabled, and immunocompromised people are just absolutely fucked by Long Covid

8 150 510

The Real McCoy @rippermd41.bsky.social · 9h

“According to the results, 4.5% post-COVID-19 participants met ME/CFS diagnostic criteria, compared to 0.6% participants who did not have a SARS-CoV-2 infection.”

4.5% aka 1 in 22

RECOVER: Researching COVID to Enhance Recovery

The long-term effects of COVID are real. Join the NIH in the search for answers.

recovercovid.org

10

The Real McCoy @rippermd41.bsky.social · 9h

“Hispanic and Black respondents were more likely than other racial or ethnic groups to report COVID-19 symptoms lasting three months or longer, according to the U.S. Census Bureau’s Household Pulse Survey (HPS).”

Household Pulse Survey Shows 31.1% Reported Symptoms Three Months or Longer After They Had COVID-19

Household Pulse Survey began asking about long COVID-19 in 2022 and 31.1% said they still experienced symptoms three months or longer after testing positive.

www.census.gov

1 9

The Real McCoy @rippermd41.bsky.social · 9h

“Of survey respondents who reported having had COVID-19, 40% reported ongoing symptoms at the time of the survey.”

link.springer.com/article/10.1...

The Experience of Long COVID Among American Indian Individuals in Three Great Plains Communities - Journal of Racial and Ethnic Health Disparities

Long COVID may impact populations differently. In July 2023, at the direction of a community advisory board, we administered a cross-sectional survey to explore attitudes and experiences of long COVID...

link.springer.com

1 9

The Real McCoy @rippermd41.bsky.social · 9h

If you want some stats to back up these claims.

“Three months after COVID-19 infection, 40% of adults and 16% of children living on the Navajo Nation or White Mountain Apache Tribal lands in Arizona still had symptoms…”

www.cidrap.umn.edu/covid-19/cov...

COVID symptoms prolonged in adults, kids living on Arizona tribal land, data suggest

The most common symptoms were fatigue, cough, headache, nasal congestion, and muscle pain.

www.cidrap.umn.edu

1 13

The Real McCoy @rippermd41.bsky.social · 9h

FYI for #MECFS and #LongCovid communities

If you use any protein powders, worth taking a look through this.

I’ve seen some people mention using Huel. Huel Black edition was one of the worst offenders.

paris martineau @paris.nyc · 12h

my latest investigation for @consumerreports.org is based on months of reporting and 60+ lab tests of leading protein supplements

we found that most protein powders and shakes have more lead in one serving than our experts say is safe to have in a day (🧵)

www.consumerreports.org/lead/protein...

Protein Powders and Shakes Contain High Levels of Lead - Consumer Reports

CR tests of 23 popular protein powders and shakes found that most contain high levels of lead.

www.consumerreports.org

7 8

The Real McCoy @rippermd41.bsky.social · 12h

It’s only controversial when referring to it in the context of covid since it’s airborne.

The best hand hygiene in the world won’t protect you on a plane if the person sitting next to you has covid. Only a high quality respirator (like an N95) will.

1 1

The Real McCoy @rippermd41.bsky.social · 12h

Sometimes I’m great at pacing.

Other times, not so much 😬

For me I know it’s directly tied to my autism and ADHD. I can’t shut my brain off and it’s hard to switch between tasks as frequently as pacing requires.

4

Reposted by The Real McCoy

Steve Fifield @stevefifield.bsky.social · 14h

🙏👍 Important fundraising initiative to help people with ME:

#pwME #pwLC

sarah boothby @swastrosarah.bsky.social · 14h

Please repost to other platforms if you have a presence there @meownersclub.bsky.social @tomkindlon.bsky.social @janetsylvester.bsky.social @severemecymru.bsky.social @davetuller1.bsky.social @meactnet.bsky.social

sarah boothby @swastrosarah.bsky.social · 15h

I just donated, again. One week to go before Judicial Review deadline. Please support these brave families www.crowdjustice.com/case/justice...

1 2

Reposted by The Real McCoy

sarah boothby @swastrosarah.bsky.social · 15h

I just donated, again. One week to go before Judicial Review deadline. Please support these brave families www.crowdjustice.com/case/justice...

NHS care for ME now

Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.

www.crowdjustice.com

8 13

The Real McCoy @rippermd41.bsky.social · 12h

There’s also #MECFS

1 in 22 covid infections will go on to develop ME, a condition with one of the worst qualities of life.

Only 25% of us can work.
The severest are too sick to leave their house and/or bed.

The absolute worst are tube fed, unable to tolerate light, sound or touch.

1 2 19

The Real McCoy @rippermd41.bsky.social · 12h

As to the what you’re risking, it’s almost every facet of your health.

Blood clots, your brain, heart attacks, strokes, organ damage, etc (the list is endless).

There’s also concern it may increase your risk of cancer and neurodegenerative diseases. Only time will tell.

1 20

The Real McCoy @rippermd41.bsky.social · 12h

To you, getting covid may be no big deal.

But thanks to a failure in public health you have no idea who or what you’re risking.

Repeat covid infections are really bad for those with Long Covid.

Did you know that Black, Latino and Native American communities are at highest risk for Long Covid?

1 5 28

The Real McCoy @rippermd41.bsky.social · 12h

Most people aren’t asking you mask at all times.

They ask that you mask in essential places: public transit, hospitals, doctors’ offices, pharmacies etc.

Places high risk people can’t avoid.

But if you hate wearing masks? Then advocate for indoor air quality: ventilation, filtration, etc.

jamelle @jamellebouie.net · 20h

yeah, i think a commitment to public health obligates you to get vaccinated and, when you are sick, do what you can to avoid spreading that to other people. the demand that one mask at all times in public spaces is, i think, unreasonable.

3 48 140