Wilhelmina Jenkins
@wilhelminaj.bsky.social
Living with ME/CFS since 1983. An advocate since my diagnosis in 1988.
Reposted by Wilhelmina Jenkins
And if you’re not new, please consider contributing! The site badly needs more people adding to and fact-checking it.
If you need help getting started, let me know, happy to try to help.
#MECFS #LongCovid
If you need help getting started, let me know, happy to try to help.
#MECFS #LongCovid
If you’re new to the #MECFS world I recommend bookmarking MEpedia.
It’s a great resource from @meactnet.bsky.social
Topics vary from the history of ME to researchers, systems affected in the body, treatments etc.
It’s a great resource from @meactnet.bsky.social
Topics vary from the history of ME to researchers, systems affected in the body, treatments etc.
Welcome to MEpedia
me-pedia.org
December 8, 2025 at 11:30 PM
And if you’re not new, please consider contributing! The site badly needs more people adding to and fact-checking it.
If you need help getting started, let me know, happy to try to help.
#MECFS #LongCovid
If you need help getting started, let me know, happy to try to help.
#MECFS #LongCovid
Reposted by Wilhelmina Jenkins
If you have ME/CFS or Long COVID or know someone with those diseases, you know how fragile their health can be. Please sign this letter to ensure their access to Medicaid is protected against new work requirements.
New Medicaid work requirements will take effect at the end of 2026 - it will FAIL sick people and cut off their care.
Tell HHS to recognize people with #MECFS and #LongCOVID as “medically frail” so our access to Medicaid is protected.
SIGN THE LETTER: actionnetwork.org/petitions/fr...
Tell HHS to recognize people with #MECFS and #LongCOVID as “medically frail” so our access to Medicaid is protected.
SIGN THE LETTER: actionnetwork.org/petitions/fr...
December 9, 2025 at 2:16 AM
If you have ME/CFS or Long COVID or know someone with those diseases, you know how fragile their health can be. Please sign this letter to ensure their access to Medicaid is protected against new work requirements.
Reposted by Wilhelmina Jenkins
1) Iwasaki's group has published a historical review of post-infectious syndromes.
Infections are traditionally viewed as having two outcomes: you either die or fully recover. But there are reports of post-acute sequelae after multiple infections, not just after COVID-19...
Infections are traditionally viewed as having two outcomes: you either die or fully recover. But there are reports of post-acute sequelae after multiple infections, not just after COVID-19...
December 9, 2025 at 8:46 AM
1) Iwasaki's group has published a historical review of post-infectious syndromes.
Infections are traditionally viewed as having two outcomes: you either die or fully recover. But there are reports of post-acute sequelae after multiple infections, not just after COVID-19...
Infections are traditionally viewed as having two outcomes: you either die or fully recover. But there are reports of post-acute sequelae after multiple infections, not just after COVID-19...
Reposted by Wilhelmina Jenkins
Neuroanatomical Considerations in Pediatric ME/CFS
Monday, December 15th at 1pm
Dr Peter Rowe's 5th #Evidencebased #Pediatric #MECFS webinar series #MedEd #MedSky
Provider-oriented & patient accessible
#livedexperience panel
Available online at:
Youtube.com/@MEActMaryland
#Neuroanatomy
Monday, December 15th at 1pm
Dr Peter Rowe's 5th #Evidencebased #Pediatric #MECFS webinar series #MedEd #MedSky
Provider-oriented & patient accessible
#livedexperience panel
Available online at:
Youtube.com/@MEActMaryland
#Neuroanatomy
December 9, 2025 at 6:44 AM
Neuroanatomical Considerations in Pediatric ME/CFS
Monday, December 15th at 1pm
Dr Peter Rowe's 5th #Evidencebased #Pediatric #MECFS webinar series #MedEd #MedSky
Provider-oriented & patient accessible
#livedexperience panel
Available online at:
Youtube.com/@MEActMaryland
#Neuroanatomy
Monday, December 15th at 1pm
Dr Peter Rowe's 5th #Evidencebased #Pediatric #MECFS webinar series #MedEd #MedSky
Provider-oriented & patient accessible
#livedexperience panel
Available online at:
Youtube.com/@MEActMaryland
#Neuroanatomy
Reposted by Wilhelmina Jenkins
If you’re new to the #MECFS world I recommend bookmarking MEpedia.
It’s a great resource from @meactnet.bsky.social
Topics vary from the history of ME to researchers, systems affected in the body, treatments etc.
It’s a great resource from @meactnet.bsky.social
Topics vary from the history of ME to researchers, systems affected in the body, treatments etc.
Welcome to MEpedia
me-pedia.org
December 8, 2025 at 7:19 PM
If you’re new to the #MECFS world I recommend bookmarking MEpedia.
It’s a great resource from @meactnet.bsky.social
Topics vary from the history of ME to researchers, systems affected in the body, treatments etc.
It’s a great resource from @meactnet.bsky.social
Topics vary from the history of ME to researchers, systems affected in the body, treatments etc.
Reposted by Wilhelmina Jenkins
New Medicaid work requirements will take effect at the end of 2026 - it will FAIL sick people and cut off their care.
Tell HHS to recognize people with #MECFS and #LongCOVID as “medically frail” so our access to Medicaid is protected.
SIGN THE LETTER: actionnetwork.org/petitions/fr...
Tell HHS to recognize people with #MECFS and #LongCOVID as “medically frail” so our access to Medicaid is protected.
SIGN THE LETTER: actionnetwork.org/petitions/fr...
December 8, 2025 at 6:37 PM
New Medicaid work requirements will take effect at the end of 2026 - it will FAIL sick people and cut off their care.
Tell HHS to recognize people with #MECFS and #LongCOVID as “medically frail” so our access to Medicaid is protected.
SIGN THE LETTER: actionnetwork.org/petitions/fr...
Tell HHS to recognize people with #MECFS and #LongCOVID as “medically frail” so our access to Medicaid is protected.
SIGN THE LETTER: actionnetwork.org/petitions/fr...
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 Dec. 1 - 7.
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 - December 2025
This thread has a Science for ME 'News in Brief' post for each week in December 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
www.s4me.info
December 8, 2025 at 1:56 AM
Our latest News in Brief summary has headlines and links to further reading for #MECFS, #LongCovid, and related news for the week of Dec. 1 - 7.
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...
Atlanta friends! Don’t miss this free concert experience on Dec. 13 for those living with chronic illness, including long COVID, and their family members, caregivers and health care providers. Masks will be available and encouraged. For those who can’t attend in person, there will be a livestream.
Atlanta Friends: Reserve a spot now for Joshua Roman's Immunity tour coming December 13! #longcovid #mecfs
www.eventbrite.com/e/joshua-rom...
www.eventbrite.com/e/joshua-rom...
Joshua Roman Immunity - Atlanta
A free concert experience for those living with chronic illness and/or long COVID, family members, caretakers, and healthcare providers.
www.eventbrite.com
December 7, 2025 at 6:30 PM
Atlanta friends! Don’t miss this free concert experience on Dec. 13 for those living with chronic illness, including long COVID, and their family members, caregivers and health care providers. Masks will be available and encouraged. For those who can’t attend in person, there will be a livestream.
Reposted by Wilhelmina Jenkins
In need if some pre-holiday, restorative self-care? Need it to be crafted specifically for #pwME?
We invite you to join an EXTREMELY modified movement class Dec. 12th at 11 am PT/2 pm ET/7 pm GMT.
Register: ow.ly/sHNr50XCebh
This virtual class is free to attend.
#spoonie
We invite you to join an EXTREMELY modified movement class Dec. 12th at 11 am PT/2 pm ET/7 pm GMT.
Register: ow.ly/sHNr50XCebh
This virtual class is free to attend.
#spoonie
December 5, 2025 at 7:08 PM
In need if some pre-holiday, restorative self-care? Need it to be crafted specifically for #pwME?
We invite you to join an EXTREMELY modified movement class Dec. 12th at 11 am PT/2 pm ET/7 pm GMT.
Register: ow.ly/sHNr50XCebh
This virtual class is free to attend.
#spoonie
We invite you to join an EXTREMELY modified movement class Dec. 12th at 11 am PT/2 pm ET/7 pm GMT.
Register: ow.ly/sHNr50XCebh
This virtual class is free to attend.
#spoonie
Reposted by Wilhelmina Jenkins
1) 🧬 New results from the LOCOME project. It applied the combinatorial analytics of PrecisionLife on data from DecodeME.
The 259 genes that were most associated with ME/CFS pointed to "neurological dysregulation, inflammation, cellular stress responses, and calcium signaling"
The 259 genes that were most associated with ME/CFS pointed to "neurological dysregulation, inflammation, cellular stress responses, and calcium signaling"
December 5, 2025 at 8:45 AM
1) 🧬 New results from the LOCOME project. It applied the combinatorial analytics of PrecisionLife on data from DecodeME.
The 259 genes that were most associated with ME/CFS pointed to "neurological dysregulation, inflammation, cellular stress responses, and calcium signaling"
The 259 genes that were most associated with ME/CFS pointed to "neurological dysregulation, inflammation, cellular stress responses, and calcium signaling"
Reposted by Wilhelmina Jenkins
Experts Urge Long COVID Study of Historical Illnesses
In a paper publishing in the Cell Press journal..on December 4, scientists & doctors highlight the importance of studying long COVID in the context of other post-acute infection syndromes or chronic illnesses
www.miragenews.com/experts-urge...
In a paper publishing in the Cell Press journal..on December 4, scientists & doctors highlight the importance of studying long COVID in the context of other post-acute infection syndromes or chronic illnesses
www.miragenews.com/experts-urge...
Experts Urge Long COVID Study of Historical Illnesses
In a paper publishing in the Cell Press journal Trends in Immunology on December 4, scientists and doctors highlight the importance of studying long
www.miragenews.com
December 4, 2025 at 4:58 PM
Experts Urge Long COVID Study of Historical Illnesses
In a paper publishing in the Cell Press journal..on December 4, scientists & doctors highlight the importance of studying long COVID in the context of other post-acute infection syndromes or chronic illnesses
www.miragenews.com/experts-urge...
In a paper publishing in the Cell Press journal..on December 4, scientists & doctors highlight the importance of studying long COVID in the context of other post-acute infection syndromes or chronic illnesses
www.miragenews.com/experts-urge...
Reposted by Wilhelmina Jenkins
Feeling extra pressure to push yourself past your limit? Wondering how to explain those limits to those around you? Wanting to join in the seasonal joy but not sure how to make it a SAFE reality for you? We've got you! www.meaction.net/post/facets-...
#holidays #spoonie #pwME #spoonie
#holidays #spoonie #pwME #spoonie
December 4, 2025 at 11:51 PM
Feeling extra pressure to push yourself past your limit? Wondering how to explain those limits to those around you? Wanting to join in the seasonal joy but not sure how to make it a SAFE reality for you? We've got you! www.meaction.net/post/facets-...
#holidays #spoonie #pwME #spoonie
#holidays #spoonie #pwME #spoonie
Reposted by Wilhelmina Jenkins
We’re discussing Grief, Stress, and Connection During the Holidays at the #MEAction Partner Caregiver support group meeting this Sunday, Dec. 7, from 12–1 p.m. PST / 3–4 p.m. EST / 8–9 p.m.
All caregivers are welcome to join
www.meaction.net/event-detail...
All caregivers are welcome to join
www.meaction.net/event-detail...
#MEAction Partner Caregiver Support Call | #MEAction
The Partner Caregivers Support Group invites caregivers who are spouses, partners, or significant others of people with ME/CFS or Long COVID (and associated conditions) to join us to connect, share, a...
www.meaction.net
December 3, 2025 at 10:02 PM
We’re discussing Grief, Stress, and Connection During the Holidays at the #MEAction Partner Caregiver support group meeting this Sunday, Dec. 7, from 12–1 p.m. PST / 3–4 p.m. EST / 8–9 p.m.
All caregivers are welcome to join
www.meaction.net/event-detail...
All caregivers are welcome to join
www.meaction.net/event-detail...
Reposted by Wilhelmina Jenkins
Today is Giving Tuesday! All Donations tripled!
We simply cannot continue without your support. We need your help to raise $150,000 by Dec. 31, or #MEAction will not be able to do the work we do.
Donate now and be a lantern for all of us! meaction.net/donate
We simply cannot continue without your support. We need your help to raise $150,000 by Dec. 31, or #MEAction will not be able to do the work we do.
Donate now and be a lantern for all of us! meaction.net/donate
December 2, 2025 at 9:06 PM
Today is Giving Tuesday! All Donations tripled!
We simply cannot continue without your support. We need your help to raise $150,000 by Dec. 31, or #MEAction will not be able to do the work we do.
Donate now and be a lantern for all of us! meaction.net/donate
We simply cannot continue without your support. We need your help to raise $150,000 by Dec. 31, or #MEAction will not be able to do the work we do.
Donate now and be a lantern for all of us! meaction.net/donate
Reposted by Wilhelmina Jenkins
#MEAction has a 3X Matching opportunity for this #GivingTuesday - all donations will be TRIPLED today! www.meaction.net/donate
We simply cannot continue without your support. Help us continue to be a lantern in the darkness. We need your help to raise $150,000 by December 31st.
Thank you!
We simply cannot continue without your support. Help us continue to be a lantern in the darkness. We need your help to raise $150,000 by December 31st.
Thank you!
December 2, 2025 at 1:33 PM
#MEAction has a 3X Matching opportunity for this #GivingTuesday - all donations will be TRIPLED today! www.meaction.net/donate
We simply cannot continue without your support. Help us continue to be a lantern in the darkness. We need your help to raise $150,000 by December 31st.
Thank you!
We simply cannot continue without your support. Help us continue to be a lantern in the darkness. We need your help to raise $150,000 by December 31st.
Thank you!
Reposted by Wilhelmina Jenkins
1) No new research papers today, so we wanted to share some info from the big PAIS protest in the Netherlands on Sunday. It had a big turnout and reached the national press.
December 2, 2025 at 9:39 AM
1) No new research papers today, so we wanted to share some info from the big PAIS protest in the Netherlands on Sunday. It had a big turnout and reached the national press.
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. 24 - 30.
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 30, 2025 at 11:17 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. 24 - 30.
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) Dr. Michael Peluso will lead a big ME/CFS project called CHIME.
The infrastructure first built for HIV, then used for Long Covid in the LIINC study, will now also help with studying pre-pandemic ME/CFS
The research will focus on gut biopsies and PET-CT scans.
The infrastructure first built for HIV, then used for Long Covid in the LIINC study, will now also help with studying pre-pandemic ME/CFS
The research will focus on gut biopsies and PET-CT scans.
November 27, 2025 at 9:37 AM
1) Dr. Michael Peluso will lead a big ME/CFS project called CHIME.
The infrastructure first built for HIV, then used for Long Covid in the LIINC study, will now also help with studying pre-pandemic ME/CFS
The research will focus on gut biopsies and PET-CT scans.
The infrastructure first built for HIV, then used for Long Covid in the LIINC study, will now also help with studying pre-pandemic ME/CFS
The research will focus on gut biopsies and PET-CT scans.
Another excellent article from @miriametucker.bsky.social covering the panel on disability at the International Association of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) 2025 virtual meeting. Very helpful insights.
Medscape: 'How to Help With ME/CFS and Long COVID Disability Claims'
By Miriam E. Tucker
www.medscape.com/viewarticle/...
By Miriam E. Tucker
www.medscape.com/viewarticle/...
How to Help With ME/CFS and Long COVID Disability Claims
A disability attorney specializing in chronic disabling conditions and a physician with extensive experience helping patients file claims offer advice.
www.medscape.com
November 27, 2025 at 12:21 AM
Another excellent article from @miriametucker.bsky.social covering the panel on disability at the International Association of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) 2025 virtual meeting. Very helpful insights.
Reposted by Wilhelmina Jenkins
When a loved one with #MECFS or #LongCOVID experiences a crash, knowing how to respond matters. 💙 Our Caregiver Guidance resource offers practical steps for safe, compassionate support during post-exertional malaise (PEM).
Read it now: https://bit.ly/44ZtO4R
#UnitedForME
Read it now: https://bit.ly/44ZtO4R
#UnitedForME
November 25, 2025 at 7:16 PM
When a loved one with #MECFS or #LongCOVID experiences a crash, knowing how to respond matters. 💙 Our Caregiver Guidance resource offers practical steps for safe, compassionate support during post-exertional malaise (PEM).
Read it now: https://bit.ly/44ZtO4R
#UnitedForME
Read it now: https://bit.ly/44ZtO4R
#UnitedForME
Reposted by Wilhelmina Jenkins
To celebrate Family Caregivers Month, we’re unveiling brand-new shirts, sweatshirts, & mugs — created by caregivers for our community!
Our community came together — caregivers, volunteers, designers, friends — to create these items! Find them here: www.bonfire.com/store/meacti...
#InvisibleIllness
Our community came together — caregivers, volunteers, designers, friends — to create these items! Find them here: www.bonfire.com/store/meacti...
#InvisibleIllness
November 25, 2025 at 7:12 PM
To celebrate Family Caregivers Month, we’re unveiling brand-new shirts, sweatshirts, & mugs — created by caregivers for our community!
Our community came together — caregivers, volunteers, designers, friends — to create these items! Find them here: www.bonfire.com/store/meacti...
#InvisibleIllness
Our community came together — caregivers, volunteers, designers, friends — to create these items! Find them here: www.bonfire.com/store/meacti...
#InvisibleIllness
Reposted by Wilhelmina Jenkins
Light Up A Lantern!
Everyone who gives $50+ to #MEAction fundraiser will have the ability to list a name on a lantern. You may light up a lantern in honor or in memory of someone else.
And, your donation will be DOUBLED thanks to a matching donation!
www.meaction.net/donate
Everyone who gives $50+ to #MEAction fundraiser will have the ability to list a name on a lantern. You may light up a lantern in honor or in memory of someone else.
And, your donation will be DOUBLED thanks to a matching donation!
www.meaction.net/donate
November 25, 2025 at 6:43 PM
Light Up A Lantern!
Everyone who gives $50+ to #MEAction fundraiser will have the ability to list a name on a lantern. You may light up a lantern in honor or in memory of someone else.
And, your donation will be DOUBLED thanks to a matching donation!
www.meaction.net/donate
Everyone who gives $50+ to #MEAction fundraiser will have the ability to list a name on a lantern. You may light up a lantern in honor or in memory of someone else.
And, your donation will be DOUBLED thanks to a matching donation!
www.meaction.net/donate
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. 🧵