Wilhelmina Jenkins
@wilhelminaj.bsky.social
Living with ME/CFS since 1983. An advocate since my diagnosis in 1988.
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
Reposted by Wilhelmina Jenkins
Fatigue & cognition are linked in #MECFS & #LongCOVID.
At #IACFSME2025, Dr. Suzanne Vernon (BHC Research Director) shared how oxaloacetate may restore energy metabolism & cognitive clarity by strengthening the fatigue-cognition axis.
Watch:
At #IACFSME2025, Dr. Suzanne Vernon (BHC Research Director) shared how oxaloacetate may restore energy metabolism & cognitive clarity by strengthening the fatigue-cognition axis.
Watch:
IACFSME 2025 Conference Susan Vernon, PhD
In this IACFSME 2025 conference highlight, Suzanne D. Vernon, PhD, Research Director at Bateman Horne Center, explains how oxaloacetate may strengthen the fa...
youtu.be
November 13, 2025 at 7:36 PM
Fatigue & cognition are linked in #MECFS & #LongCOVID.
At #IACFSME2025, Dr. Suzanne Vernon (BHC Research Director) shared how oxaloacetate may restore energy metabolism & cognitive clarity by strengthening the fatigue-cognition axis.
Watch:
At #IACFSME2025, Dr. Suzanne Vernon (BHC Research Director) shared how oxaloacetate may restore energy metabolism & cognitive clarity by strengthening the fatigue-cognition axis.
Watch:
Reposted by Wilhelmina Jenkins
1) 🇩🇪 Some really good news! Germany plans to invest half a billion euros in research on diseases such as ME/CFS and Long Covid.
They are calling it "The National Decade Against Post-Infectious Diseases"
They are calling it "The National Decade Against Post-Infectious Diseases"
November 14, 2025 at 8:30 AM
1) 🇩🇪 Some really good news! Germany plans to invest half a billion euros in research on diseases such as ME/CFS and Long Covid.
They are calling it "The National Decade Against Post-Infectious Diseases"
They are calling it "The National Decade Against Post-Infectious Diseases"
Reposted by Wilhelmina Jenkins
Join our caregiver call this Saturday Nov 15th at 1:30 PM – 3:30 PM EST.
We welcome caregivers of people with chronic diseases such as myalgic encephalomyelitis (ME), Long COVID, MCAS, etc. to our calls as we connect with and support each other!
www.meaction.net/event-detail...
#caregiver
We welcome caregivers of people with chronic diseases such as myalgic encephalomyelitis (ME), Long COVID, MCAS, etc. to our calls as we connect with and support each other!
www.meaction.net/event-detail...
#caregiver
November 13, 2025 at 6:39 PM
Join our caregiver call this Saturday Nov 15th at 1:30 PM – 3:30 PM EST.
We welcome caregivers of people with chronic diseases such as myalgic encephalomyelitis (ME), Long COVID, MCAS, etc. to our calls as we connect with and support each other!
www.meaction.net/event-detail...
#caregiver
We welcome caregivers of people with chronic diseases such as myalgic encephalomyelitis (ME), Long COVID, MCAS, etc. to our calls as we connect with and support each other!
www.meaction.net/event-detail...
#caregiver
Reposted by Wilhelmina Jenkins
Please help us wish @wilhelminaj.bsky.social a very happy birthday!
Wilhelmina is a force in our community. We would not be where we are without her. We are truly honored and touched by her gift which will be matched!
#pwME
Wilhelmina is a force in our community. We would not be where we are without her. We are truly honored and touched by her gift which will be matched!
#pwME
I am celebrating my birthday by making a donation to @meactnet.bsky.social to keep the struggle going in these difficult times. Here’s how to join me in supporting this essential work.
www.meaction.net/lantern-in-t...
www.meaction.net/lantern-in-t...
BE A LANTERN IN THE DARKNESS | #MEAction
Be the light by helping #MEAction raise $150,000 by December 31st. We have a $50,000 matching donation so your dollars go further!
www.meaction.net
November 12, 2025 at 9:39 PM
Please help us wish @wilhelminaj.bsky.social a very happy birthday!
Wilhelmina is a force in our community. We would not be where we are without her. We are truly honored and touched by her gift which will be matched!
#pwME
Wilhelmina is a force in our community. We would not be where we are without her. We are truly honored and touched by her gift which will be matched!
#pwME
Today is my 78th birthday. When I first became ill in 1983, I was 33. I was 38 when I was diagnosed and attended my first support group meeting. Since then, I have worked with many wonderful people in the fight to make ME/CFS respected, funded, researched, understood, treated and, we hope, cured.
November 12, 2025 at 8:38 PM
Today is my 78th birthday. When I first became ill in 1983, I was 33. I was 38 when I was diagnosed and attended my first support group meeting. Since then, I have worked with many wonderful people in the fight to make ME/CFS respected, funded, researched, understood, treated and, we hope, cured.
Reposted by Wilhelmina Jenkins
☕ Join us Wed. Nov 12 at 10 AM MST for “Coffee” with a Clinician: Navigating Clinical Uncertainty Pt 2.
Hear patients, caregivers & clinicians share ways to bridge communication in complex care.
Free | $5 optional donation.
🔗 https://bit.ly/3JCHAFq
#MECFS #LongCOVID #IACCs
Hear patients, caregivers & clinicians share ways to bridge communication in complex care.
Free | $5 optional donation.
🔗 https://bit.ly/3JCHAFq
#MECFS #LongCOVID #IACCs
November 11, 2025 at 11:10 PM
☕ Join us Wed. Nov 12 at 10 AM MST for “Coffee” with a Clinician: Navigating Clinical Uncertainty Pt 2.
Hear patients, caregivers & clinicians share ways to bridge communication in complex care.
Free | $5 optional donation.
🔗 https://bit.ly/3JCHAFq
#MECFS #LongCOVID #IACCs
Hear patients, caregivers & clinicians share ways to bridge communication in complex care.
Free | $5 optional donation.
🔗 https://bit.ly/3JCHAFq
#MECFS #LongCOVID #IACCs
Reposted by Wilhelmina Jenkins
1) The results of RECOVER-NEURO are in!
It tested:
- computerized cognitive training
- cognitive-behavioral rehabilitation
- transcranial direct current stimulation
but no intervention showed significant improvement compared to a control group that did video puzzles and games.
It tested:
- computerized cognitive training
- cognitive-behavioral rehabilitation
- transcranial direct current stimulation
but no intervention showed significant improvement compared to a control group that did video puzzles and games.
November 11, 2025 at 9:25 AM
1) The results of RECOVER-NEURO are in!
It tested:
- computerized cognitive training
- cognitive-behavioral rehabilitation
- transcranial direct current stimulation
but no intervention showed significant improvement compared to a control group that did video puzzles and games.
It tested:
- computerized cognitive training
- cognitive-behavioral rehabilitation
- transcranial direct current stimulation
but no intervention showed significant improvement compared to a control group that did video puzzles and games.
Reposted by Wilhelmina Jenkins
Have you wondered how you can help a caregiver in your life?
If you’re a caregiver, have you ever had a friend say, “Let me know how I can help,” and your mind just goes blank?
Check out Supporting Family Caregivers by Caregiver Wisdom: www.caregiverwisdom.net/post/support...
#Caregiver
If you’re a caregiver, have you ever had a friend say, “Let me know how I can help,” and your mind just goes blank?
Check out Supporting Family Caregivers by Caregiver Wisdom: www.caregiverwisdom.net/post/support...
#Caregiver
Supporting Family Caregivers: 25 Heartwarming Ways You Can Make a Difference
Have you wondered how you can help a caregiver in your life - specific, actionable ways you can help? Here are 25 thoughtful ways you can provide meaningful support to family caregivers.
www.caregiverwisdom.net
November 11, 2025 at 5:49 PM
Have you wondered how you can help a caregiver in your life?
If you’re a caregiver, have you ever had a friend say, “Let me know how I can help,” and your mind just goes blank?
Check out Supporting Family Caregivers by Caregiver Wisdom: www.caregiverwisdom.net/post/support...
#Caregiver
If you’re a caregiver, have you ever had a friend say, “Let me know how I can help,” and your mind just goes blank?
Check out Supporting Family Caregivers by Caregiver Wisdom: www.caregiverwisdom.net/post/support...
#Caregiver
Reposted by Wilhelmina Jenkins
Solve ME: “Hyperstimulated Innate Immune System Can Drive ME/CFS-Associated Fatigue and Post-Exertional Malaise”
“These results suggest possible treatments for people with ME/CFS”
solvecfs.org/hyperstimula...
“These results suggest possible treatments for people with ME/CFS”
solvecfs.org/hyperstimula...
Hyperstimulated Innate Immune System Can Drive ME/CFS-Associated Fatigue and Post-Exertional Malaise - Solve ME/CFS Initiative
A new study by Dr. Ian Lipkin describes how a hyperactive innate immune system can drive ME/CFS-associated fatigue and post-exertional malaise.
solvecfs.org
November 11, 2025 at 2:07 AM
Solve ME: “Hyperstimulated Innate Immune System Can Drive ME/CFS-Associated Fatigue and Post-Exertional Malaise”
“These results suggest possible treatments for people with ME/CFS”
solvecfs.org/hyperstimula...
“These results suggest possible treatments for people with ME/CFS”
solvecfs.org/hyperstimula...
Reposted by Wilhelmina Jenkins
Sign up for these 2 workshops for #caregivers.
1. Nov. 16 @ 3 pm ET: 10 Lessons from 20 Years of Caregiving — Kim Moya
ow.ly/gtAP50XlbZb
2. Nov. 22 @ 3 pm ET: Chronic Illness Caregiving for Youth, Teen, & Adult Children — Denise Lopez-Majano ow.ly/3IcV50XlbZh
#pwME #ChronicIllness
1. Nov. 16 @ 3 pm ET: 10 Lessons from 20 Years of Caregiving — Kim Moya
ow.ly/gtAP50XlbZb
2. Nov. 22 @ 3 pm ET: Chronic Illness Caregiving for Youth, Teen, & Adult Children — Denise Lopez-Majano ow.ly/3IcV50XlbZh
#pwME #ChronicIllness
November 10, 2025 at 6:23 PM
Sign up for these 2 workshops for #caregivers.
1. Nov. 16 @ 3 pm ET: 10 Lessons from 20 Years of Caregiving — Kim Moya
ow.ly/gtAP50XlbZb
2. Nov. 22 @ 3 pm ET: Chronic Illness Caregiving for Youth, Teen, & Adult Children — Denise Lopez-Majano ow.ly/3IcV50XlbZh
#pwME #ChronicIllness
1. Nov. 16 @ 3 pm ET: 10 Lessons from 20 Years of Caregiving — Kim Moya
ow.ly/gtAP50XlbZb
2. Nov. 22 @ 3 pm ET: Chronic Illness Caregiving for Youth, Teen, & Adult Children — Denise Lopez-Majano ow.ly/3IcV50XlbZh
#pwME #ChronicIllness