The Real McCoy
@rippermd41.bsky.social
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
Pinned
The Real McCoy
@rippermd41.bsky.social
· Nov 10
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)
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
Considering holding a pay-as-you're-able talk. People in the #NEISvoid, what would you consider valuable to you? Please do share as well ❤️
November 18, 2025 at 4:40 PM
Considering holding a pay-as-you're-able talk. People in the #NEISvoid, what would you consider valuable to you? Please do share as well ❤️
Reposted by The Real McCoy
- He stopped the policy of encouraging flu immunization in Louisiana
- Delayed reporting on a pertussis outbreak that killed two children in Louisiana.
-Promoted false information on covid vaccine harms.
He is now number 2 at CDC.
www.nbcnews.com/health/healt...
- Delayed reporting on a pertussis outbreak that killed two children in Louisiana.
-Promoted false information on covid vaccine harms.
He is now number 2 at CDC.
www.nbcnews.com/health/healt...
Controversial Louisiana surgeon general tapped for CDC leadership role
Louisiana Surgeon General Ralph Abraham has spoken against Covid shots and ended mass vaccination campaigns. Now he's in a position to make national health decisions.
www.nbcnews.com
November 25, 2025 at 6:49 PM
- He stopped the policy of encouraging flu immunization in Louisiana
- Delayed reporting on a pertussis outbreak that killed two children in Louisiana.
-Promoted false information on covid vaccine harms.
He is now number 2 at CDC.
www.nbcnews.com/health/healt...
- Delayed reporting on a pertussis outbreak that killed two children in Louisiana.
-Promoted false information on covid vaccine harms.
He is now number 2 at CDC.
www.nbcnews.com/health/healt...
Reposted by The Real McCoy
Great comment from @jefflubellc19.bsky.social in @annfammed.bsky.social.
He argues for the value of patient and caregiver observations and hypotheses, saying journals should publish more case studies and hypothesis papers from those groups.
Feat. @patientled.bsky.social!
#MedSky #MECFS #hEDS
He argues for the value of patient and caregiver observations and hypotheses, saying journals should publish more case studies and hypothesis papers from those groups.
Feat. @patientled.bsky.social!
#MedSky #MECFS #hEDS
To Ground Research in the Lived Experience of Patients and Caregivers, Give Us a Voice!
My daughter has been diagnosed with a range of chronic conditions, including Hyper-mobile Ehlers-Danlos Syndrome and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I have approached my r...
www.annfammed.org
November 25, 2025 at 7:57 PM
Great comment from @jefflubellc19.bsky.social in @annfammed.bsky.social.
He argues for the value of patient and caregiver observations and hypotheses, saying journals should publish more case studies and hypothesis papers from those groups.
Feat. @patientled.bsky.social!
#MedSky #MECFS #hEDS
He argues for the value of patient and caregiver observations and hypotheses, saying journals should publish more case studies and hypothesis papers from those groups.
Feat. @patientled.bsky.social!
#MedSky #MECFS #hEDS
Reposted by The Real McCoy
🧵#CLoCK Update
New paper released on #longcovid paediatric fatigue that demonstrates UK research culture has not made the vital steps needed to meet need or understand the disease.
Let's critically assess the issues:
/1
New paper released on #longcovid paediatric fatigue that demonstrates UK research culture has not made the vital steps needed to meet need or understand the disease.
Let's critically assess the issues:
/1
November 25, 2025 at 8:01 PM
🧵#CLoCK Update
New paper released on #longcovid paediatric fatigue that demonstrates UK research culture has not made the vital steps needed to meet need or understand the disease.
Let's critically assess the issues:
/1
New paper released on #longcovid paediatric fatigue that demonstrates UK research culture has not made the vital steps needed to meet need or understand the disease.
Let's critically assess the issues:
/1
Reposted by The Real McCoy
Some good discounts here for #pwME #LongCovid
The rest of this thread will contain our affiliate and/or discount information by vendor.
You can also go to our website to see or share them all at once. www.renegade-research.org/discounts-an...
You can also go to our website to see or share them all at once. www.renegade-research.org/discounts-an...
Discounts & Affiliate Links | Renegade Research
Tests and supplements available at a discount using either a code or special link. Affiliate links to help us fund our mission.
www.renegade-research.org
November 25, 2025 at 8:18 PM
Some good discounts here for #pwME #LongCovid
Reposted by The Real McCoy
Both the NYT & WaPo are reporting today on Ralph Abraham, LA's surgeon general, who on Sun. quietly became principal deputy director at the CDC (a change reported via a Substack, vs publicly). He was a GOP congressman from 2014-2020.
He has BIG issues:
1/10
www.washingtonpost.com/health/2025/...
He has BIG issues:
1/10
www.washingtonpost.com/health/2025/...
Louisiana health official who halted state vaccine campaign tapped as CDC’s No. 2
Ralph Abraham has been appointed as the CDC’s principal deputy director.
www.washingtonpost.com
November 25, 2025 at 9:41 PM
Both the NYT & WaPo are reporting today on Ralph Abraham, LA's surgeon general, who on Sun. quietly became principal deputy director at the CDC (a change reported via a Substack, vs publicly). He was a GOP congressman from 2014-2020.
He has BIG issues:
1/10
www.washingtonpost.com/health/2025/...
He has BIG issues:
1/10
www.washingtonpost.com/health/2025/...
It’s helpful to know that Wust has form.
This past weekend wasn’t the first time he threatened to stop researching ME because of criticism.
One of his colleagues needs to call him in on this BS.
This past weekend wasn’t the first time he threatened to stop researching ME because of criticism.
One of his colleagues needs to call him in on this BS.
It’s not the first time Wüst didn’t handle feedback well and threatened to stop research b/c of it, an abusive move imo.
Dude needs to learn to manage his own feelings on it instead of lashing out as a first response.
Post in thread 'News from The Netherlands' www.s4me.info/threads/news...
Dude needs to learn to manage his own feelings on it instead of lashing out as a first response.
Post in thread 'News from The Netherlands' www.s4me.info/threads/news...
![Rob Wüst 22nd of July, deleted -
"Net patiënten feedback ontvangen van een [@]ZonMw aanvraag over #MECVS. Waarom moet er op alle slakken zout gelegd worden? Willen patiënten dan niet dat we onderzoek naar hun ziekte doen?? Beetje stoom afblazen..."
"Just received patient feedback on a ZonMw [grant] request on ME/CFS. Why does there have to be criticism on every small insignificant detail?* Don't patients want us to research their disease? Venting a little..."
[*lit translated: why does there have to be put salt on all snails?]](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:mi4z7r6iwl5mkniwgbm3oewt/bafkreih4qtbwiz6clqljrjr2aswzpg6loxh24rmttapcpvwwcnvq7ylb7q@jpeg)
November 25, 2025 at 11:38 PM
It’s helpful to know that Wust has form.
This past weekend wasn’t the first time he threatened to stop researching ME because of criticism.
One of his colleagues needs to call him in on this BS.
This past weekend wasn’t the first time he threatened to stop researching ME because of criticism.
One of his colleagues needs to call him in on this BS.
Also I know Twitter can be a place that stirs up division, but that’s not what happened with this.
Vast majority of the replies to his original comment were polite and measured. They ranged from “big fan of your work” and “please keep going”…
#MECFS
1/
Vast majority of the replies to his original comment were polite and measured. They ranged from “big fan of your work” and “please keep going”…
#MECFS
1/
If anyone wants an update, he responded with a clarification.
First post is the original that upset a lot of people with ME.
Next 3 posts were added today.
I’ll link what he was responding to in the next post.
First post is the original that upset a lot of people with ME.
Next 3 posts were added today.
I’ll link what he was responding to in the next post.
November 24, 2025 at 10:52 PM
Also I know Twitter can be a place that stirs up division, but that’s not what happened with this.
Vast majority of the replies to his original comment were polite and measured. They ranged from “big fan of your work” and “please keep going”…
#MECFS
1/
Vast majority of the replies to his original comment were polite and measured. They ranged from “big fan of your work” and “please keep going”…
#MECFS
1/
If anyone wants an update, he responded with a clarification.
First post is the original that upset a lot of people with ME.
Next 3 posts were added today.
I’ll link what he was responding to in the next post.
First post is the original that upset a lot of people with ME.
Next 3 posts were added today.
I’ll link what he was responding to in the next post.
November 24, 2025 at 9:39 PM
If anyone wants an update, he responded with a clarification.
First post is the original that upset a lot of people with ME.
Next 3 posts were added today.
I’ll link what he was responding to in the next post.
First post is the original that upset a lot of people with ME.
Next 3 posts were added today.
I’ll link what he was responding to in the next post.
Reposted by The Real McCoy
Please share with people with #LongCOVID in your life. It would be incredible to hit 1000 in the next week! (They are already over 700 since this post!)
We are up to 688 LoCITT participants!
If we could enroll all 1,000 participants within a month of launch (by 11/30), it would send a powerful message about the demand for remote Long COVID clinical trials.
We appreciate the community's help to spread the word:
longcovid.scripps.edu/locitt-t/?ut...
If we could enroll all 1,000 participants within a month of launch (by 11/30), it would send a powerful message about the demand for remote Long COVID clinical trials.
We appreciate the community's help to spread the word:
longcovid.scripps.edu/locitt-t/?ut...
LoCITT-T - Long COVID Treatment Trial
The Long COVID Treatment Trial-Tirzepatide (LoCITT-T) is investigating the efficacy of repurposing this drug to treat Long COVID.
longcovid.scripps.edu
November 24, 2025 at 8:47 PM
Please share with people with #LongCOVID in your life. It would be incredible to hit 1000 in the next week! (They are already over 700 since this post!)
Reposted by The Real McCoy
I have $639 left, thank you SO much to the generous people who already donated 😭
Because of the ice raids, I haven’t been able to find a caregiver through medicaid since June. For three days a week I have to hire one from a company, and it cost $39.50 an hour. I owe $898 from my last bill and I’m struggling. If youd like to donate I would appreciate it ❤️
Donate to Critical Healthcare Support for Victoria, organized by Vee Copeland
Hello everyone,
My name is Victoria and thank you for checking out my gofundme.… Vee Copeland needs your support for Critical Healthcare Support for Victoria
www.gofundme.com
November 24, 2025 at 4:11 PM
I have $639 left, thank you SO much to the generous people who already donated 😭
Reposted by The Real McCoy
Dr. Wüsts reply to ÖG ME/CFS‘ critique on their validation survey is so indicative of the many issues within the academy. Especially re: power dynamics, & community-engaged work. I implore researchers to understand that community-engaged work is methodologically rigorous, & takes time to learn.
November 23, 2025 at 3:32 PM
Dr. Wüsts reply to ÖG ME/CFS‘ critique on their validation survey is so indicative of the many issues within the academy. Especially re: power dynamics, & community-engaged work. I implore researchers to understand that community-engaged work is methodologically rigorous, & takes time to learn.
Reposted by The Real McCoy
Ordinarily enrolling a thousand patients is a very protracted process of months or years—the speed of enrollment here is a chance to send a message that more trials should center patients like this one does.
To sign up or learn more:
To sign up or learn more:
November 23, 2025 at 9:19 PM
Ordinarily enrolling a thousand patients is a very protracted process of months or years—the speed of enrollment here is a chance to send a message that more trials should center patients like this one does.
To sign up or learn more:
To sign up or learn more:
Reposted by The Real McCoy
We always see a surge of infectious disease, including COVID, RSV, etc etc around Thanksgiving and Christmas. Unless you want to gift your fam with a few weeks sick this year, mask up as you travel!
November 24, 2025 at 12:24 AM
We always see a surge of infectious disease, including COVID, RSV, etc etc around Thanksgiving and Christmas. Unless you want to gift your fam with a few weeks sick this year, mask up as you travel!
Reposted by The Real McCoy
This is an excellent piece on PEM by @darthfoo.bsky.social. Seriously considering sending to literally everyone I know.
substack.com/home/post/p-...
substack.com/home/post/p-...
Why I Can’t Just Meet You for Dinner
The Reality of Post-Exertional Malaise
substack.com
November 23, 2025 at 6:23 PM
This is an excellent piece on PEM by @darthfoo.bsky.social. Seriously considering sending to literally everyone I know.
substack.com/home/post/p-...
substack.com/home/post/p-...
Reposted by The Real McCoy
Because of the ice raids, I haven’t been able to find a caregiver through medicaid since June. For three days a week I have to hire one from a company, and it cost $39.50 an hour. I owe $898 from my last bill and I’m struggling. If youd like to donate I would appreciate it ❤️
Donate to Critical Healthcare Support for Victoria, organized by Vee Copeland
Hello everyone,
My name is Victoria and thank you for checking out my gofundme.… Vee Copeland needs your support for Critical Healthcare Support for Victoria
www.gofundme.com
November 23, 2025 at 6:02 PM
Because of the ice raids, I haven’t been able to find a caregiver through medicaid since June. For three days a week I have to hire one from a company, and it cost $39.50 an hour. I owe $898 from my last bill and I’m struggling. If youd like to donate I would appreciate it ❤️
Reposted by The Real McCoy
71 responses in 4 days. Thank you to all hcps who have answered the survey so far. Please keep sharing. You can stop and restart the survey so it does allow for pacing. Thank you for all your insights, so valuable. @physiosforme.bsky.social
🚨New survey alert 🚨
The experiences of healthcare professionals living with Long COVID (with PEM) and/or ME
All information can be found on the landing page here.
www.physiosforme.com/hcpwithmesur...
The experiences of healthcare professionals living with Long COVID (with PEM) and/or ME
All information can be found on the landing page here.
www.physiosforme.com/hcpwithmesur...
hcps with ME survey | Physiosforme
www.physiosforme.com
November 23, 2025 at 7:55 AM
71 responses in 4 days. Thank you to all hcps who have answered the survey so far. Please keep sharing. You can stop and restart the survey so it does allow for pacing. Thank you for all your insights, so valuable. @physiosforme.bsky.social
A great thread of advice for doctor’s appointments 👇
I’ll add some other tips but know this:
It is completely absurd and ridiculous that we have to game the system like this.
Doctors should listen and take us seriously from the get go.
But that’s not the world we live in.
#MECFS
I’ll add some other tips but know this:
It is completely absurd and ridiculous that we have to game the system like this.
Doctors should listen and take us seriously from the get go.
But that’s not the world we live in.
#MECFS
Found my doctors appointments got less frustrating once I started going in like “I really want to play badminton again 😢 but I can’t even push a cart around the grocery store 😢 and I’ve hit a wall where no matter what I do I can’t seem to increase my exercise capacity 😢 and it makes it hard to work”
The rationale behind these studies, Seltzer contests, is [that] “it presumes that the patient had never heard of exercise until a doctor told them [it] exists.”
Thanks to Simon Spichak for putting this idea into print. I've said multiple times in interviews that it's the strangest part... 🧵
Thanks to Simon Spichak for putting this idea into print. I've said multiple times in interviews that it's the strangest part... 🧵
November 23, 2025 at 7:39 AM
A great thread of advice for doctor’s appointments 👇
I’ll add some other tips but know this:
It is completely absurd and ridiculous that we have to game the system like this.
Doctors should listen and take us seriously from the get go.
But that’s not the world we live in.
#MECFS
I’ll add some other tips but know this:
It is completely absurd and ridiculous that we have to game the system like this.
Doctors should listen and take us seriously from the get go.
But that’s not the world we live in.
#MECFS
Reposted by The Real McCoy
Unfortunately after the sudden loss of my very young brother last month, grief left me unable to advocate for myself and i fell $460 short on rent.
$maelee21
V: @ Maelee-Johnson
PayPal.me/maeleeJ
ko-fi.com/maedaej
#neisvoid #disabilitycommunity #spoonie #helpfolkslive
$maelee21
V: @ Maelee-Johnson
PayPal.me/maeleeJ
ko-fi.com/maedaej
#neisvoid #disabilitycommunity #spoonie #helpfolkslive
November 22, 2025 at 8:52 PM
Unfortunately after the sudden loss of my very young brother last month, grief left me unable to advocate for myself and i fell $460 short on rent.
$maelee21
V: @ Maelee-Johnson
PayPal.me/maeleeJ
ko-fi.com/maedaej
#neisvoid #disabilitycommunity #spoonie #helpfolkslive
$maelee21
V: @ Maelee-Johnson
PayPal.me/maeleeJ
ko-fi.com/maedaej
#neisvoid #disabilitycommunity #spoonie #helpfolkslive
Reposted by The Real McCoy
Clip: @oonaghcousins.bsky.social explains how post-exertional malaise has affected her. It’s not tiredness after exercise, simple tasks like preparing food or even talking would cause her whole body would go into shutdown, affecting her nervous, immune, digestive systems and more.
November 22, 2025 at 6:15 PM
Clip: @oonaghcousins.bsky.social explains how post-exertional malaise has affected her. It’s not tiredness after exercise, simple tasks like preparing food or even talking would cause her whole body would go into shutdown, affecting her nervous, immune, digestive systems and more.
Reposted by The Real McCoy
Hope she gets better but I’m cringing at the boom-bust behavior & the language around “failing” 👀
open.substack.com/pub/inneruni...
open.substack.com/pub/inneruni...
I was the Deputy Director of the Office of Long COVID. Now I’m terrified I have it.
I have been unwell for almost two months.
open.substack.com
November 22, 2025 at 10:18 PM
Hope she gets better but I’m cringing at the boom-bust behavior & the language around “failing” 👀
open.substack.com/pub/inneruni...
open.substack.com/pub/inneruni...
Reposted by The Real McCoy
This is another oft-undescribed thing! Often people who have "recovered" still experience PEM, just at much, much higher levels of activity.
Thread.
Even now, when I am 90% back to my pre-Covid baseline, I can experience PEM after going past my now-better (much!) limit. You say, “Hey! If I go past my limit, I am stuck feeling flu-like for two to three days!”, and they don’t listen.
Even now, when I am 90% back to my pre-Covid baseline, I can experience PEM after going past my now-better (much!) limit. You say, “Hey! If I go past my limit, I am stuck feeling flu-like for two to three days!”, and they don’t listen.
The rationale behind these studies, Seltzer contests, is [that] “it presumes that the patient had never heard of exercise until a doctor told them [it] exists.”
Thanks to Simon Spichak for putting this idea into print. I've said multiple times in interviews that it's the strangest part... 🧵
Thanks to Simon Spichak for putting this idea into print. I've said multiple times in interviews that it's the strangest part... 🧵
November 22, 2025 at 1:49 PM
This is another oft-undescribed thing! Often people who have "recovered" still experience PEM, just at much, much higher levels of activity.
Reposted by The Real McCoy
All of Bluesky this morning:
a person holding a bag with a note that says dead dove do not eat
Alt: a person holding a bag with a note that says dead dove do not eat
media.tenor.com
November 22, 2025 at 1:33 PM
All of Bluesky this morning:
Fair warning: this survey triggered PEM for me and I bailed only 4 questions in.
Under the post on the other site others reported similar issues.
There is a save button at least.
#MECFS
Under the post on the other site others reported similar issues.
There is a save button at least.
#MECFS
#pwME #LongCovidME please help Rob Wüst with establishing a clincial definition of #PEM.
"= Minimum age of 18 years
= Physician-confirmed diagnosis of ME/CFS
= Ability to read and answer the questionnaire in German or English
= Voluntary consent to participate"
www.soscisurvey.de/V-PEM-AQ_eng...
"= Minimum age of 18 years
= Physician-confirmed diagnosis of ME/CFS
= Ability to read and answer the questionnaire in German or English
= Voluntary consent to participate"
www.soscisurvey.de/V-PEM-AQ_eng...
Questionnaire | page 1
www.soscisurvey.de
November 22, 2025 at 1:33 PM
Fair warning: this survey triggered PEM for me and I bailed only 4 questions in.
Under the post on the other site others reported similar issues.
There is a save button at least.
#MECFS
Under the post on the other site others reported similar issues.
There is a save button at least.
#MECFS
Reposted by The Real McCoy
Clip: Julie Heath shares the impact of becoming a carer for her husband and two children with #MECFS, and how she’s become their advocate because they don’t have the energy to do things like speak to their GP. ME/CFS doesn’t just affect individuals it affects whole families.
November 22, 2025 at 11:23 AM
Clip: Julie Heath shares the impact of becoming a carer for her husband and two children with #MECFS, and how she’s become their advocate because they don’t have the energy to do things like speak to their GP. ME/CFS doesn’t just affect individuals it affects whole families.