Wilhelmina Jenkins
@wilhelminaj.bsky.social
Living with ME/CFS since 1983. An advocate since my diagnosis in 1988.
Pinned
Our workshop "Chronic Illness Caregiving for Youth, Teen, and Adult Children" with Denise Lopez-Majano is this Saturday - November 22nd at 3 pm ET! Get your ticket now: ow.ly/3IcV50XlbZh
All caregivers welcome! New to caregiving or a veteran at it, there is something for you!
#caregiver
All caregivers welcome! New to caregiving or a veteran at it, there is something for you!
#caregiver
Don’t miss this informative workshop today!
My daughter became ill with ME/CFS back in high school. I can’t express how important a workshop like this would have been for me as my family faced so many decisions about supporting her through this life-crushing illness.
Caregivers - join in today!
My daughter became ill with ME/CFS back in high school. I can’t express how important a workshop like this would have been for me as my family faced so many decisions about supporting her through this life-crushing illness.
Caregivers - join in today!
Reposted by Wilhelmina Jenkins
The majority of Long COVID research investigating exercise benefits completely ignores post-exertional malaise (PEM) - one of the core symptoms of #LongCOVID.
An analysis by @thesicktimes.org showed that less than 20% of Long COVID trials involving exercise even mention PEM.
An analysis by @thesicktimes.org showed that less than 20% of Long COVID trials involving exercise even mention PEM.
November 24, 2025 at 10:12 PM
The majority of Long COVID research investigating exercise benefits completely ignores post-exertional malaise (PEM) - one of the core symptoms of #LongCOVID.
An analysis by @thesicktimes.org showed that less than 20% of Long COVID trials involving exercise even mention PEM.
An analysis by @thesicktimes.org showed that less than 20% of Long COVID trials involving exercise even mention PEM.
Reposted by Wilhelmina Jenkins
Our latest News in Brief summary has headlines and links to further reading for #MECFS, #LongCovid, and related news for the week of Nov. 17 - 23.
Topics:
News, advocacy and articles
Coming events
Research news and commentary
& Published research
www.s4me.info/threads/news...
Topics:
News, advocacy and articles
Coming events
Research news and commentary
& Published research
www.s4me.info/threads/news...
News in Brief - November 2025
This thread has a Science for ME 'News in Brief' post for each week in November 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
November 24, 2025 at 12:02 AM
Our latest News in Brief summary has headlines and links to further reading for #MECFS, #LongCovid, and related news for the week of Nov. 17 - 23.
Topics:
News, advocacy and articles
Coming events
Research news and commentary
& Published research
www.s4me.info/threads/news...
Topics:
News, advocacy and articles
Coming events
Research news and commentary
& Published research
www.s4me.info/threads/news...
Reposted by Wilhelmina Jenkins
1) Quite impressive that PolyBio (@polybioRF) has raised $42 million since 2021 with very little overhead.
While we have doubts about their strong focus on viral persistence, their studies on brain scans and tissue samples look very interesting. 🧵
While we have doubts about their strong focus on viral persistence, their studies on brain scans and tissue samples look very interesting. 🧵
November 23, 2025 at 2:00 PM
1) Quite impressive that PolyBio (@polybioRF) has raised $42 million since 2021 with very little overhead.
While we have doubts about their strong focus on viral persistence, their studies on brain scans and tissue samples look very interesting. 🧵
While we have doubts about their strong focus on viral persistence, their studies on brain scans and tissue samples look very interesting. 🧵
Reposted by Wilhelmina Jenkins
This is today!
Our workshop "Chronic Illness Caregiving for Youth, Teen, and Adult Children" with Denise Lopez-Majano is this Saturday - November 22nd at 3 pm ET! Get your ticket now: ow.ly/3IcV50XlbZh
All caregivers welcome! New to caregiving or a veteran at it, there is something for you!
#caregiver
All caregivers welcome! New to caregiving or a veteran at it, there is something for you!
#caregiver
November 22, 2025 at 5:03 PM
This is today!
Don’t miss this informative workshop today!
My daughter became ill with ME/CFS back in high school. I can’t express how important a workshop like this would have been for me as my family faced so many decisions about supporting her through this life-crushing illness.
Caregivers - join in today!
My daughter became ill with ME/CFS back in high school. I can’t express how important a workshop like this would have been for me as my family faced so many decisions about supporting her through this life-crushing illness.
Caregivers - join in today!
Our workshop "Chronic Illness Caregiving for Youth, Teen, and Adult Children" with Denise Lopez-Majano is this Saturday - November 22nd at 3 pm ET! Get your ticket now: ow.ly/3IcV50XlbZh
All caregivers welcome! New to caregiving or a veteran at it, there is something for you!
#caregiver
All caregivers welcome! New to caregiving or a veteran at it, there is something for you!
#caregiver
November 22, 2025 at 4:23 PM
Don’t miss this informative workshop today!
My daughter became ill with ME/CFS back in high school. I can’t express how important a workshop like this would have been for me as my family faced so many decisions about supporting her through this life-crushing illness.
Caregivers - join in today!
My daughter became ill with ME/CFS back in high school. I can’t express how important a workshop like this would have been for me as my family faced so many decisions about supporting her through this life-crushing illness.
Caregivers - join in today!
Reposted by Wilhelmina Jenkins
1) New sociology paper on severe ME/CFS. The authors analyzed 342 messages on Twitter/X to get insights into the daily reality of people with severe ME/CFS.
They highlight the feeling of being trapped by the illness, profound isolation and longing for the outside world.
They highlight the feeling of being trapped by the illness, profound isolation and longing for the outside world.
November 22, 2025 at 8:39 AM
1) New sociology paper on severe ME/CFS. The authors analyzed 342 messages on Twitter/X to get insights into the daily reality of people with severe ME/CFS.
They highlight the feeling of being trapped by the illness, profound isolation and longing for the outside world.
They highlight the feeling of being trapped by the illness, profound isolation and longing for the outside world.
Reposted by Wilhelmina Jenkins
Clinical trials are under attack from the Trump administration.
@washingtonpost.com reported on a new JAMA paper that shows grants for 383 clinical trials were terminated from the end of February to August, affecting more than 74,000 trial participants.
@allysonchiu.bsky.social
@washingtonpost.com reported on a new JAMA paper that shows grants for 383 clinical trials were terminated from the end of February to August, affecting more than 74,000 trial participants.
@allysonchiu.bsky.social
November 21, 2025 at 7:13 PM
Clinical trials are under attack from the Trump administration.
@washingtonpost.com reported on a new JAMA paper that shows grants for 383 clinical trials were terminated from the end of February to August, affecting more than 74,000 trial participants.
@allysonchiu.bsky.social
@washingtonpost.com reported on a new JAMA paper that shows grants for 383 clinical trials were terminated from the end of February to August, affecting more than 74,000 trial participants.
@allysonchiu.bsky.social
Reposted by Wilhelmina Jenkins
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... 🧵
“People who are performing these studies are extraordinarily ignorant, and their ignorance is dangerous,” said @exceedhergrasp1.bsky.social. She and other experts agree these trials are a waste of $$ and will not advance our biological understanding of Long COVID. thesicktimes.org/2025/11/21/l...
Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise - The Sick Times
An analysis by The Sick Times find that less than 15% of Long COVID clinical trials testing the benefits of exercise or cardiopulmonary rehabilitation measured post-exertional malaise, according to th...
thesicktimes.org
November 21, 2025 at 3:56 PM
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... 🧵
Reposted by Wilhelmina Jenkins
#MEAction has been working hard this year to be a lantern in the darkness. We have had some wins, moments that stood out, and times where this community made a difference. See our list: www.meaction.net/post/meactio...
We need your support. Your gift will be matched up to $50k!
#pwME #pwLC #MECFS
We need your support. Your gift will be matched up to $50k!
#pwME #pwLC #MECFS
#MEAction's Top 10 Accomplishments of 2025
This year has been hard- we know because we have been on the ground fighting for ME and Long COVID every single day. In 2025, #MEAction has accomplished a lot. Just take a look below.1. Advocating for...
www.meaction.net
November 20, 2025 at 7:49 PM
#MEAction has been working hard this year to be a lantern in the darkness. We have had some wins, moments that stood out, and times where this community made a difference. See our list: www.meaction.net/post/meactio...
We need your support. Your gift will be matched up to $50k!
#pwME #pwLC #MECFS
We need your support. Your gift will be matched up to $50k!
#pwME #pwLC #MECFS
Reposted by Wilhelmina Jenkins
Our workshop "Chronic Illness Caregiving for Youth, Teen, and Adult Children" with Denise Lopez-Majano is this Saturday - November 22nd at 3 pm ET! Get your ticket now: ow.ly/3IcV50XlbZh
All caregivers welcome! New to caregiving or a veteran at it, there is something for you!
#caregiver
All caregivers welcome! New to caregiving or a veteran at it, there is something for you!
#caregiver
November 20, 2025 at 6:23 PM
Our workshop "Chronic Illness Caregiving for Youth, Teen, and Adult Children" with Denise Lopez-Majano is this Saturday - November 22nd at 3 pm ET! Get your ticket now: ow.ly/3IcV50XlbZh
All caregivers welcome! New to caregiving or a veteran at it, there is something for you!
#caregiver
All caregivers welcome! New to caregiving or a veteran at it, there is something for you!
#caregiver
Reposted by Wilhelmina Jenkins
Call to action: Congress has extended Telehealth until January 31,2026.
This is NOT a permanent solution. So, we must continue to put pressure on Congress to make telehealth for Medicare permanent.
Call now using our call script: www.meaction.net/telehealth
#Telehealth #PwME #MECFS #LongCovid
This is NOT a permanent solution. So, we must continue to put pressure on Congress to make telehealth for Medicare permanent.
Call now using our call script: www.meaction.net/telehealth
#Telehealth #PwME #MECFS #LongCovid
November 19, 2025 at 9:27 PM
Call to action: Congress has extended Telehealth until January 31,2026.
This is NOT a permanent solution. So, we must continue to put pressure on Congress to make telehealth for Medicare permanent.
Call now using our call script: www.meaction.net/telehealth
#Telehealth #PwME #MECFS #LongCovid
This is NOT a permanent solution. So, we must continue to put pressure on Congress to make telehealth for Medicare permanent.
Call now using our call script: www.meaction.net/telehealth
#Telehealth #PwME #MECFS #LongCovid
Reposted by Wilhelmina Jenkins
It's not quite the end of 2025 yet but here's a summary of what #meaction did this year:
"#MEAction's Top 10 Accomplishments of 2025"
https://www.meaction.net/post/meaction-s-top-10-accomplishments-of-2025
#mecfs #pwme #advocacy #activism
"#MEAction's Top 10 Accomplishments of 2025"
https://www.meaction.net/post/meaction-s-top-10-accomplishments-of-2025
#mecfs #pwme #advocacy #activism
#MEAction's Top 10 Accomplishments of 2025
This year has been hard- we know because we have been on the ground fighting for ME and Long COVID every single day. In 2025, #MEAction has accomplished a lot. Just take a look below.1. Advocating for funding for the ME/CFS Research Roadmap: Secured a meeting with the NIH Director, and got the roadmap included in Congress’ draft appropriations language.2. Helping Minnesotans with ME/CFS and Long COVID apply for home care support by launching the Minnesota Home Help Navigation Program.3. Fighting
www.meaction.net
November 19, 2025 at 6:27 PM
Reposted by Wilhelmina Jenkins
As a community-centered & disability-led organization, #MEAction’s strength lies in the choices we make that shape programs long before launch. It is these decisions that allow us to continue to serve you as a light for this community.
Learn more:
www.meaction.net/post/inside-...
Learn more:
www.meaction.net/post/inside-...
November 19, 2025 at 5:09 PM
As a community-centered & disability-led organization, #MEAction’s strength lies in the choices we make that shape programs long before launch. It is these decisions that allow us to continue to serve you as a light for this community.
Learn more:
www.meaction.net/post/inside-...
Learn more:
www.meaction.net/post/inside-...
Reposted by Wilhelmina Jenkins
Do you have a family caregiver in your life? Want to tell them thanks and show your appreciation? We created some images you are welcome to save and share throughout the year with the caregivers in your life! It can be for your caregiver or for a friend who is caregiving.
#FamilyCaregiver #pwME
#FamilyCaregiver #pwME
November 18, 2025 at 5:24 PM
Do you have a family caregiver in your life? Want to tell them thanks and show your appreciation? We created some images you are welcome to save and share throughout the year with the caregivers in your life! It can be for your caregiver or for a friend who is caregiving.
#FamilyCaregiver #pwME
#FamilyCaregiver #pwME
Reposted by Wilhelmina Jenkins
1) 🇺🇸 The RECOVER study published its data on Long COVID trajectories.
Of those infected with SARS-CoV-2 infection, 5% had persistently high Long COVID-related symptom burden. An additional 12% had a high burden that fluctuated but did not improve over time.
Of those infected with SARS-CoV-2 infection, 5% had persistently high Long COVID-related symptom burden. An additional 12% had a high burden that fluctuated but did not improve over time.
November 18, 2025 at 8:43 AM
1) 🇺🇸 The RECOVER study published its data on Long COVID trajectories.
Of those infected with SARS-CoV-2 infection, 5% had persistently high Long COVID-related symptom burden. An additional 12% had a high burden that fluctuated but did not improve over time.
Of those infected with SARS-CoV-2 infection, 5% had persistently high Long COVID-related symptom burden. An additional 12% had a high burden that fluctuated but did not improve over time.
Reposted by Wilhelmina Jenkins
November is Native American and Alaska Native Heritage Month.
It is ALWAYS important for us to be listening and learning from Indigenous and native voices. We are sharing some resources to help.
PBS has a selection of documentaries for those able to watch videos. ow.ly/9UAI50Xt6Kh
It is ALWAYS important for us to be listening and learning from Indigenous and native voices. We are sharing some resources to help.
PBS has a selection of documentaries for those able to watch videos. ow.ly/9UAI50Xt6Kh
What to Watch: Celebrate Native American Heritage Month | PBS
What to watch to celebrate Native American Heritage Month. Explore documentaries and programs from Indigenous and native storytellers.
ow.ly
November 17, 2025 at 11:28 PM
November is Native American and Alaska Native Heritage Month.
It is ALWAYS important for us to be listening and learning from Indigenous and native voices. We are sharing some resources to help.
PBS has a selection of documentaries for those able to watch videos. ow.ly/9UAI50Xt6Kh
It is ALWAYS important for us to be listening and learning from Indigenous and native voices. We are sharing some resources to help.
PBS has a selection of documentaries for those able to watch videos. ow.ly/9UAI50Xt6Kh
Reposted by Wilhelmina Jenkins
1) Researchers from Stanford University published an important paper linking Epstein-Barr Virus (EBV) with the autoimmune disease Lupus.
The first (Dr. Shady Younis) and last author of the paper (Dr. William H. Robinson) have previously been involved in ME/CFS research.
The first (Dr. Shady Younis) and last author of the paper (Dr. William H. Robinson) have previously been involved in ME/CFS research.
November 17, 2025 at 2:02 PM
1) Researchers from Stanford University published an important paper linking Epstein-Barr Virus (EBV) with the autoimmune disease Lupus.
The first (Dr. Shady Younis) and last author of the paper (Dr. William H. Robinson) have previously been involved in ME/CFS research.
The first (Dr. Shady Younis) and last author of the paper (Dr. William H. Robinson) have previously been involved in ME/CFS research.
Reposted by Wilhelmina Jenkins
Komaroff at the IACFSME conference: “40 years ago we knew nothing about the underlying biology of ME/CFS. Today, multiple abnormalities involving the CNS and ANS, immune system, energy metabolism, vascular system and gut microbiome have been identified and replicated."
tinyurl.com/43rf4rbz
tinyurl.com/43rf4rbz
My Reflections on the 2025 IACFSME Conference
From October 22 through October 25, I attended the 2025 IACFSME 17th Research and Clinical Conference (International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis)…
tinyurl.com
November 17, 2025 at 3:04 PM
Komaroff at the IACFSME conference: “40 years ago we knew nothing about the underlying biology of ME/CFS. Today, multiple abnormalities involving the CNS and ANS, immune system, energy metabolism, vascular system and gut microbiome have been identified and replicated."
tinyurl.com/43rf4rbz
tinyurl.com/43rf4rbz
Reposted by Wilhelmina Jenkins
A recent study by the team at the Center for Infection and Immunity at Columbia Univ. describes how a hyperactive innate immune system can drive #MECFS -associated fatigue & #PEM, laying the groundwork for preventive treatments & advancing diagnostic tools. Read our summary here:
ow.ly/piKz50Xt44g
ow.ly/piKz50Xt44g
November 17, 2025 at 6:42 PM
A recent study by the team at the Center for Infection and Immunity at Columbia Univ. describes how a hyperactive innate immune system can drive #MECFS -associated fatigue & #PEM, laying the groundwork for preventive treatments & advancing diagnostic tools. Read our summary here:
ow.ly/piKz50Xt44g
ow.ly/piKz50Xt44g
Reposted by Wilhelmina Jenkins
Our latest News in Brief summary has headlines and links to further reading for #MECFS, #LongCovid, and related news for the week of Nov. 10 - 16.
Topics:
News, advocacy and articles
Coming events
Research news and commentary
& Published research
www.s4me.info/threads/news...
Topics:
News, advocacy and articles
Coming events
Research news and commentary
& Published research
www.s4me.info/threads/news...
News in Brief - November 2025
This thread has a Science for ME 'News in Brief' post for each week in November 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
November 16, 2025 at 11:18 PM
Our latest News in Brief summary has headlines and links to further reading for #MECFS, #LongCovid, and related news for the week of Nov. 10 - 16.
Topics:
News, advocacy and articles
Coming events
Research news and commentary
& Published research
www.s4me.info/threads/news...
Topics:
News, advocacy and articles
Coming events
Research news and commentary
& Published research
www.s4me.info/threads/news...
Reposted by Wilhelmina Jenkins
1) Neuroscientist Michael VanElzakker showed some interesting results on brain inflammation in ME/CFS and Long Covid.
This was presented at the International Conference in Portugal earlier this week.
This was presented at the International Conference in Portugal earlier this week.
November 16, 2025 at 9:18 AM
1) Neuroscientist Michael VanElzakker showed some interesting results on brain inflammation in ME/CFS and Long Covid.
This was presented at the International Conference in Portugal earlier this week.
This was presented at the International Conference in Portugal earlier this week.
Reposted by Wilhelmina Jenkins
Join us TOMORROW - Nov. 16 at 3 pm ET for a workshop for caregivers: Top 10 Lessons from 20 Years of Caregiving by Kim Moy. ow.ly/gtAP50XlbZb
Do not miss our 2nd workshop especially for parent caregivers coming Nov. 22.
#PwME #UnitedForME #Caregiver #ChronicIllness
Do not miss our 2nd workshop especially for parent caregivers coming Nov. 22.
#PwME #UnitedForME #Caregiver #ChronicIllness
November 15, 2025 at 7:55 PM
Join us TOMORROW - Nov. 16 at 3 pm ET for a workshop for caregivers: Top 10 Lessons from 20 Years of Caregiving by Kim Moy. ow.ly/gtAP50XlbZb
Do not miss our 2nd workshop especially for parent caregivers coming Nov. 22.
#PwME #UnitedForME #Caregiver #ChronicIllness
Do not miss our 2nd workshop especially for parent caregivers coming Nov. 22.
#PwME #UnitedForME #Caregiver #ChronicIllness
Reposted by Wilhelmina Jenkins
1) This study from Cornell University tested more than 6000 proteins before and after two exercise tests.
It found altered patterns in ME/CFS patients compared to controls, particularly in proteins involved in the immune system, signal transduction, and muscle contraction.
It found altered patterns in ME/CFS patients compared to controls, particularly in proteins involved in the immune system, signal transduction, and muscle contraction.
November 15, 2025 at 8:21 AM
1) This study from Cornell University tested more than 6000 proteins before and after two exercise tests.
It found altered patterns in ME/CFS patients compared to controls, particularly in proteins involved in the immune system, signal transduction, and muscle contraction.
It found altered patterns in ME/CFS patients compared to controls, particularly in proteins involved in the immune system, signal transduction, and muscle contraction.
Disability activist Alice Wong has died.
November 15, 2025 at 7:53 AM
Disability activist Alice Wong has died.
Reposted by Wilhelmina Jenkins
The Sick Times wrote an article about how community and organizations fight to advocate for #longCovid and #MECFS, even in very sick bodies.
#MEAction is featured throughout the article for our medical education work and direct action.
@thesicktimes.org
#MEAction is featured throughout the article for our medical education work and direct action.
@thesicktimes.org
November 14, 2025 at 7:07 PM
The Sick Times wrote an article about how community and organizations fight to advocate for #longCovid and #MECFS, even in very sick bodies.
#MEAction is featured throughout the article for our medical education work and direct action.
@thesicktimes.org
#MEAction is featured throughout the article for our medical education work and direct action.
@thesicktimes.org