BedboundPhotography vol 13 reaching for life & light #SevereME #SevereMEawareness #disabilityrights #CanyouseeMEnow #chronicpain #millionsmissing
March 19, 2025 at 9:17 AM
BedboundPhotography vol 13 reaching for life & light #SevereME #SevereMEawareness #disabilityrights #CanyouseeMEnow #chronicpain #millionsmissing
From @dougieslifewithmecfs on IG:
Today is severe ME awareness day. If you can please show love and support to this post for all the people suffering and having suffered from severe ME.
#mecfs #mecfsawareness #severemeawareness #severemeawarenessday #spoonie
Today is severe ME awareness day. If you can please show love and support to this post for all the people suffering and having suffered from severe ME.
#mecfs #mecfsawareness #severemeawareness #severemeawarenessday #spoonie
August 8, 2026 at 10:13 PM
From @dougieslifewithmecfs on IG:
Today is severe ME awareness day. If you can please show love and support to this post for all the people suffering and having suffered from severe ME.
#mecfs #mecfsawareness #severemeawareness #severemeawarenessday #spoonie
Today is severe ME awareness day. If you can please show love and support to this post for all the people suffering and having suffered from severe ME.
#mecfs #mecfsawareness #severemeawareness #severemeawarenessday #spoonie
When time loses all meaning
& you are stuck in the void
it can be really hard to find your voice
Thanks Tom @tomkindlon.bsky.social for leaving a light on
#SevereME #SevereMEAwareness
& you are stuck in the void
it can be really hard to find your voice
Thanks Tom @tomkindlon.bsky.social for leaving a light on
#SevereME #SevereMEAwareness
One week ago to August 8, #SEVEREMEDAY
I have a Pinterest board with 699 pins on #severeMECFS here ie.pinterest.com/tomkindlon/m... that could be shared around. It mainly contains images but also links to videos & articles
You don't need to be on Pinterest
#SevereME #MEcfs #PwME
I have a Pinterest board with 699 pins on #severeMECFS here ie.pinterest.com/tomkindlon/m... that could be shared around. It mainly contains images but also links to videos & articles
You don't need to be on Pinterest
#SevereME #MEcfs #PwME
August 2, 2025 at 4:08 AM
When time loses all meaning
& you are stuck in the void
it can be really hard to find your voice
Thanks Tom @tomkindlon.bsky.social for leaving a light on
#SevereME #SevereMEAwareness
& you are stuck in the void
it can be really hard to find your voice
Thanks Tom @tomkindlon.bsky.social for leaving a light on
#SevereME #SevereMEAwareness
@solveme.bsky.social + BHC co-hosted a series for people with #SevereME & caregivers.
Part 4: Removing Barriers to Research
Solve ME hosts Sabrina Poirier & Dr. David Putrino to discuss how patients are reshaping research.
Watch: bit.ly/4f4m4Vn
#SevereMEAwareness #MECFS
Part 4: Removing Barriers to Research
Solve ME hosts Sabrina Poirier & Dr. David Putrino to discuss how patients are reshaping research.
Watch: bit.ly/4f4m4Vn
#SevereMEAwareness #MECFS
August 26, 2025 at 5:31 PM
@solveme.bsky.social + BHC co-hosted a series for people with #SevereME & caregivers.
Part 4: Removing Barriers to Research
Solve ME hosts Sabrina Poirier & Dr. David Putrino to discuss how patients are reshaping research.
Watch: bit.ly/4f4m4Vn
#SevereMEAwareness #MECFS
Part 4: Removing Barriers to Research
Solve ME hosts Sabrina Poirier & Dr. David Putrino to discuss how patients are reshaping research.
Watch: bit.ly/4f4m4Vn
#SevereMEAwareness #MECFS
Share your words.
In honor of #SevereMEAwareness Day (Aug 8), we're gathering short reflections for a special storytelling series.
Deadline: Aug 4
Email: outreach@batemanhornecenter.org
Help others understand life with Severe ME/CFS.
Video w/o music: bit.ly/4lVrS6l
In honor of #SevereMEAwareness Day (Aug 8), we're gathering short reflections for a special storytelling series.
Deadline: Aug 4
Email: outreach@batemanhornecenter.org
Help others understand life with Severe ME/CFS.
Video w/o music: bit.ly/4lVrS6l
July 31, 2025 at 4:33 PM
Share your words.
In honor of #SevereMEAwareness Day (Aug 8), we're gathering short reflections for a special storytelling series.
Deadline: Aug 4
Email: outreach@batemanhornecenter.org
Help others understand life with Severe ME/CFS.
Video w/o music: bit.ly/4lVrS6l
In honor of #SevereMEAwareness Day (Aug 8), we're gathering short reflections for a special storytelling series.
Deadline: Aug 4
Email: outreach@batemanhornecenter.org
Help others understand life with Severe ME/CFS.
Video w/o music: bit.ly/4lVrS6l
#severeME Day
Aug 8th is a day of Remembrance & a day of amplification
25% of those with #MyalgicEncephalomyelitis are Severe/Very Severe. Trapped in the Dark, the Void, the Wasteland
#SevereMEAwareness
#SevereMEAwarenessDay
#UnitedForME
Aug 8th is a day of Remembrance & a day of amplification
25% of those with #MyalgicEncephalomyelitis are Severe/Very Severe. Trapped in the Dark, the Void, the Wasteland
#SevereMEAwareness
#SevereMEAwarenessDay
#UnitedForME
August 7, 2025 at 6:03 PM
#severeME Day
Aug 8th is a day of Remembrance & a day of amplification
25% of those with #MyalgicEncephalomyelitis are Severe/Very Severe. Trapped in the Dark, the Void, the Wasteland
#SevereMEAwareness
#SevereMEAwarenessDay
#UnitedForME
Aug 8th is a day of Remembrance & a day of amplification
25% of those with #MyalgicEncephalomyelitis are Severe/Very Severe. Trapped in the Dark, the Void, the Wasteland
#SevereMEAwareness
#SevereMEAwarenessDay
#UnitedForME
While the month comes to an end: the shares, focus, education, advocacy, and fight will continue.
#MyalgicEncephalomyelitis #SevereMEAwareness #MECFS
#MyalgicEncephalomyelitis #SevereMEAwareness #MECFS
August 31, 2026 at 7:12 PM
While the month comes to an end: the shares, focus, education, advocacy, and fight will continue.
#MyalgicEncephalomyelitis #SevereMEAwareness #MECFS
#MyalgicEncephalomyelitis #SevereMEAwareness #MECFS
@solveme.bsky.social + Bateman Horne Center co-hosted the Severe ME/CFS Webinar Series to support patients & caregivers.
Part 3: Medical Panel
A candid discussion on provider challenges, systemic gaps & care strategies.
Watch: bit.ly/46pjuaj
#SevereMEAwareness #MECFS
Part 3: Medical Panel
A candid discussion on provider challenges, systemic gaps & care strategies.
Watch: bit.ly/46pjuaj
#SevereMEAwareness #MECFS
August 19, 2025 at 5:55 PM
@solveme.bsky.social + Bateman Horne Center co-hosted the Severe ME/CFS Webinar Series to support patients & caregivers.
Part 3: Medical Panel
A candid discussion on provider challenges, systemic gaps & care strategies.
Watch: bit.ly/46pjuaj
#SevereMEAwareness #MECFS
Part 3: Medical Panel
A candid discussion on provider challenges, systemic gaps & care strategies.
Watch: bit.ly/46pjuaj
#SevereMEAwareness #MECFS
Solve M.E. & Bateman Horne Center present Part 2 of the Severe ME/CFS Webinar Series: Legal Planning.
📑 Learn about:
– Guardianship & POA
– SSDI & SSI
– Practical legal strategies for caregivers & patients
Watch now: bit.ly/4m23jop
#SevereMEAwareness #DisabilitySupport @solveme.bsky.social
📑 Learn about:
– Guardianship & POA
– SSDI & SSI
– Practical legal strategies for caregivers & patients
Watch now: bit.ly/4m23jop
#SevereMEAwareness #DisabilitySupport @solveme.bsky.social
August 12, 2025 at 5:58 PM
Solve M.E. & Bateman Horne Center present Part 2 of the Severe ME/CFS Webinar Series: Legal Planning.
📑 Learn about:
– Guardianship & POA
– SSDI & SSI
– Practical legal strategies for caregivers & patients
Watch now: bit.ly/4m23jop
#SevereMEAwareness #DisabilitySupport @solveme.bsky.social
📑 Learn about:
– Guardianship & POA
– SSDI & SSI
– Practical legal strategies for caregivers & patients
Watch now: bit.ly/4m23jop
#SevereMEAwareness #DisabilitySupport @solveme.bsky.social
Lisa Marie of the WIMEL Writers shares an excerpt from When My Myalgic Encephalomyelitis Was Severe, offering a glimpse into a reality too often unseen.
Watch the full conversation: https://youtu.be/HlfbfyRl3K8
#SevereMEAwareness
Watch the full conversation: https://youtu.be/HlfbfyRl3K8
#SevereMEAwareness
August 19, 2026 at 6:06 PM
Lisa Marie of the WIMEL Writers shares an excerpt from When My Myalgic Encephalomyelitis Was Severe, offering a glimpse into a reality too often unseen.
Watch the full conversation: https://youtu.be/HlfbfyRl3K8
#SevereMEAwareness
Watch the full conversation: https://youtu.be/HlfbfyRl3K8
#SevereMEAwareness
Five organizations. One conversation.
Join the #UnitedForME collaborative on Tues, Aug. 12 at 10 a.m. MDT for a special "Coffee" with a Clinician recognizing #SevereMEAwareness Month.
Register here: https://bit.ly/3JCHAFq
@openmedf.bsky.social @solveme.bsky.social @meactnet.bsky.social
Join the #UnitedForME collaborative on Tues, Aug. 12 at 10 a.m. MDT for a special "Coffee" with a Clinician recognizing #SevereMEAwareness Month.
Register here: https://bit.ly/3JCHAFq
@openmedf.bsky.social @solveme.bsky.social @meactnet.bsky.social
August 4, 2026 at 5:19 PM
Five organizations. One conversation.
Join the #UnitedForME collaborative on Tues, Aug. 12 at 10 a.m. MDT for a special "Coffee" with a Clinician recognizing #SevereMEAwareness Month.
Register here: https://bit.ly/3JCHAFq
@openmedf.bsky.social @solveme.bsky.social @meactnet.bsky.social
Join the #UnitedForME collaborative on Tues, Aug. 12 at 10 a.m. MDT for a special "Coffee" with a Clinician recognizing #SevereMEAwareness Month.
Register here: https://bit.ly/3JCHAFq
@openmedf.bsky.social @solveme.bsky.social @meactnet.bsky.social
#SevereMEAwareness #MyalgicEncephalomyelitis #pwME
August 8 is International Awareness Day for Severe and Very Severe #MyalgicE. Let us not forget those who have died from M.E. and those who are housebound and/or bedbound, hidden from public view, suffering without proper diagnosis or healthcare.
August 8 is International Awareness Day for Severe and Very Severe #MyalgicE. Let us not forget those who have died from M.E. and those who are housebound and/or bedbound, hidden from public view, suffering without proper diagnosis or healthcare.
August 7, 2025 at 11:10 PM
#SevereMEAwareness #MyalgicEncephalomyelitis #pwME
August 8 is International Awareness Day for Severe and Very Severe #MyalgicE. Let us not forget those who have died from M.E. and those who are housebound and/or bedbound, hidden from public view, suffering without proper diagnosis or healthcare.
August 8 is International Awareness Day for Severe and Very Severe #MyalgicE. Let us not forget those who have died from M.E. and those who are housebound and/or bedbound, hidden from public view, suffering without proper diagnosis or healthcare.
⭐️ Part 4/4 of important GFM update ⭐
www.gofundme.com/f/save-nevra
⭐️Email for interest free loan- h.a.sharland@protonmail.com
#severeme #pwme #severemeawareness #mecfs #pmdd #spoonielife #millionsmissing #spooniesupport #disabilitycrowdfund #MutualAid #endometriosis
www.gofundme.com/f/save-nevra
⭐️Email for interest free loan- h.a.sharland@protonmail.com
#severeme #pwme #severemeawareness #mecfs #pmdd #spoonielife #millionsmissing #spooniesupport #disabilitycrowdfund #MutualAid #endometriosis
December 23, 2024 at 10:26 PM
⭐️ Part 4/4 of important GFM update ⭐
www.gofundme.com/f/save-nevra
⭐️Email for interest free loan- h.a.sharland@protonmail.com
#severeme #pwme #severemeawareness #mecfs #pmdd #spoonielife #millionsmissing #spooniesupport #disabilitycrowdfund #MutualAid #endometriosis
www.gofundme.com/f/save-nevra
⭐️Email for interest free loan- h.a.sharland@protonmail.com
#severeme #pwme #severemeawareness #mecfs #pmdd #spoonielife #millionsmissing #spooniesupport #disabilitycrowdfund #MutualAid #endometriosis
I really want to help awareness advocacy for Severe ME Day (August 8), but I have very limited energy. If you know of some good campaigns to back or stories to share, please reply below 👇 #SevereME #SevereMEAwareness
July 23, 2025 at 11:14 PM
I really want to help awareness advocacy for Severe ME Day (August 8), but I have very limited energy. If you know of some good campaigns to back or stories to share, please reply below 👇 #SevereME #SevereMEAwareness
“We hear you. We’re on your side.”
As #SevereMEAwareness Month closes, Stoo Brown of WIMEL reminds us why lived experience needs to reach healthcare professionals and decision-makers.
Listening, learning and advocacy continues.
https://youtu.be/HlfbfyRl3K8
As #SevereMEAwareness Month closes, Stoo Brown of WIMEL reminds us why lived experience needs to reach healthcare professionals and decision-makers.
Listening, learning and advocacy continues.
https://youtu.be/HlfbfyRl3K8
August 30, 2026 at 12:21 PM
“We hear you. We’re on your side.”
As #SevereMEAwareness Month closes, Stoo Brown of WIMEL reminds us why lived experience needs to reach healthcare professionals and decision-makers.
Listening, learning and advocacy continues.
https://youtu.be/HlfbfyRl3K8
As #SevereMEAwareness Month closes, Stoo Brown of WIMEL reminds us why lived experience needs to reach healthcare professionals and decision-makers.
Listening, learning and advocacy continues.
https://youtu.be/HlfbfyRl3K8
Looking for community this August? 💙
Aug. 4: Support Group—Caretaking While Chronically Ill
Aug. 12: Special Edition "Coffee" with a Clinician for #SevereMEAwareness Month
Aug. 18: Support Group—Self-Compassion Amidst Disease
Register: https://bit.ly/4npZ4Ud
Aug. 4: Support Group—Caretaking While Chronically Ill
Aug. 12: Special Edition "Coffee" with a Clinician for #SevereMEAwareness Month
Aug. 18: Support Group—Self-Compassion Amidst Disease
Register: https://bit.ly/4npZ4Ud
July 30, 2026 at 5:08 PM
Looking for community this August? 💙
Aug. 4: Support Group—Caretaking While Chronically Ill
Aug. 12: Special Edition "Coffee" with a Clinician for #SevereMEAwareness Month
Aug. 18: Support Group—Self-Compassion Amidst Disease
Register: https://bit.ly/4npZ4Ud
Aug. 4: Support Group—Caretaking While Chronically Ill
Aug. 12: Special Edition "Coffee" with a Clinician for #SevereMEAwareness Month
Aug. 18: Support Group—Self-Compassion Amidst Disease
Register: https://bit.ly/4npZ4Ud
⭐️ Part 2/4 of important GFM update ⭐
www.gofundme.com/f/save-nevra
⭐️Email for interest free loan- h.a.sharland@protonmail.com
#severeme #pwme #severemeawareness #mecfs #pmdd #spoonielife #millionsmissing #spooniesupport #disabilitycrowdfund #MutualAid #endometriosis
www.gofundme.com/f/save-nevra
⭐️Email for interest free loan- h.a.sharland@protonmail.com
#severeme #pwme #severemeawareness #mecfs #pmdd #spoonielife #millionsmissing #spooniesupport #disabilitycrowdfund #MutualAid #endometriosis
December 23, 2024 at 10:26 PM
⭐️ Part 2/4 of important GFM update ⭐
www.gofundme.com/f/save-nevra
⭐️Email for interest free loan- h.a.sharland@protonmail.com
#severeme #pwme #severemeawareness #mecfs #pmdd #spoonielife #millionsmissing #spooniesupport #disabilitycrowdfund #MutualAid #endometriosis
www.gofundme.com/f/save-nevra
⭐️Email for interest free loan- h.a.sharland@protonmail.com
#severeme #pwme #severemeawareness #mecfs #pmdd #spoonielife #millionsmissing #spooniesupport #disabilitycrowdfund #MutualAid #endometriosis
Today is #SevereMEawareness Day, so I'll just leave this here. It does a good job illustrating how this chronic illness wrecks people's lives and why they can't advocate for themselves.
Art by Kornelia Paulsen
#MECFS #chronicillness
Art by Kornelia Paulsen
#MECFS #chronicillness
August 9, 2026 at 3:16 AM
Today is #SevereMEawareness Day, so I'll just leave this here. It does a good job illustrating how this chronic illness wrecks people's lives and why they can't advocate for themselves.
Art by Kornelia Paulsen
#MECFS #chronicillness
Art by Kornelia Paulsen
#MECFS #chronicillness
ICYMI: Watch all recordings from our four-part #SevereME webinar series co-produced with Bateman Horne Center. Experts in the field share information on caregiving, legal rights, medical care, and research.
https://ow.ly/qTl550ZyLFN
#SevereMEAwareness #UnitedForME #MEAwarenessHour
https://ow.ly/qTl550ZyLFN
#SevereMEAwareness #UnitedForME #MEAwarenessHour
August 12, 2026 at 7:05 PM
ICYMI: Watch all recordings from our four-part #SevereME webinar series co-produced with Bateman Horne Center. Experts in the field share information on caregiving, legal rights, medical care, and research.
https://ow.ly/qTl550ZyLFN
#SevereMEAwareness #UnitedForME #MEAwarenessHour
https://ow.ly/qTl550ZyLFN
#SevereMEAwareness #UnitedForME #MEAwarenessHour
#SevereMEAwareness #pwME #SevereME
Please read & share today's Substack by longtime trustworthy patient/advocate Colleen Steckel. Good news this time: some research studies cohorts with *Severe M.E.* patients. This is progress.
Aug 8, 2025 - Severe ME Awareness Day
open.substack.com/pub/colleens...
Please read & share today's Substack by longtime trustworthy patient/advocate Colleen Steckel. Good news this time: some research studies cohorts with *Severe M.E.* patients. This is progress.
Aug 8, 2025 - Severe ME Awareness Day
open.substack.com/pub/colleens...
Aug 8, 2025 - Severe ME Awareness Day
Myalgic Encephalomyelitis Research
open.substack.com
August 8, 2025 at 6:50 PM
#SevereMEAwareness #pwME #SevereME
Please read & share today's Substack by longtime trustworthy patient/advocate Colleen Steckel. Good news this time: some research studies cohorts with *Severe M.E.* patients. This is progress.
Aug 8, 2025 - Severe ME Awareness Day
open.substack.com/pub/colleens...
Please read & share today's Substack by longtime trustworthy patient/advocate Colleen Steckel. Good news this time: some research studies cohorts with *Severe M.E.* patients. This is progress.
Aug 8, 2025 - Severe ME Awareness Day
open.substack.com/pub/colleens...
Reminder: Submissions are due Wednesday, Aug. 5.
There's still time to share your story for our In Their Words series. A short reflection, audio, or video can help others better understand severe ME/CFS.
💙 Submit here: https://bit.ly/4ftJXq5
#SevereMEAwareness #MECFS
There's still time to share your story for our In Their Words series. A short reflection, audio, or video can help others better understand severe ME/CFS.
💙 Submit here: https://bit.ly/4ftJXq5
#SevereMEAwareness #MECFS
July 28, 2026 at 5:30 PM
Reminder: Submissions are due Wednesday, Aug. 5.
There's still time to share your story for our In Their Words series. A short reflection, audio, or video can help others better understand severe ME/CFS.
💙 Submit here: https://bit.ly/4ftJXq5
#SevereMEAwareness #MECFS
There's still time to share your story for our In Their Words series. A short reflection, audio, or video can help others better understand severe ME/CFS.
💙 Submit here: https://bit.ly/4ftJXq5
#SevereMEAwareness #MECFS
8/8/2026
A month of chronic illnessness;
Yesterday was #severemeawareness day.
To find out more about what bsky.app/profile/meac... has been up to and how you can help in the greater work of our mission, check out their profile.
#cwyszzebralife #mecfs #chronicillnessiswar #severeME
A month of chronic illnessness;
Yesterday was #severemeawareness day.
To find out more about what bsky.app/profile/meac... has been up to and how you can help in the greater work of our mission, check out their profile.
#cwyszzebralife #mecfs #chronicillnessiswar #severeME
August 9, 2026 at 4:06 PM
8/8/2026
A month of chronic illnessness;
Yesterday was #severemeawareness day.
To find out more about what bsky.app/profile/meac... has been up to and how you can help in the greater work of our mission, check out their profile.
#cwyszzebralife #mecfs #chronicillnessiswar #severeME
A month of chronic illnessness;
Yesterday was #severemeawareness day.
To find out more about what bsky.app/profile/meac... has been up to and how you can help in the greater work of our mission, check out their profile.
#cwyszzebralife #mecfs #chronicillnessiswar #severeME
Meine Welt wurde nicht von heute auf morgen kleiner. Sie schrumpfte in Etappen. Mit jedem Verlust verschwand ein weiteres Stück meines bisherigen Lebens.
Zum #SevereMEAwareness Day habe ich darüber geschrieben. 💙
pacing-mecfs.de/severe-me-aw...
#SevereME #MECFS
Zum #SevereMEAwareness Day habe ich darüber geschrieben. 💙
pacing-mecfs.de/severe-me-aw...
#SevereME #MECFS
Meine Welt schrumpft: Gedanken zum Severe ME Awareness Day
Wie ME/CFS die Welt von Betroffenen Schritt für Schritt kleiner werden lässt – und warum echteres Verständnis mehr braucht als einen Blick in dunkle Zimmer.
pacing-mecfs.de
August 8, 2026 at 5:47 AM
Meine Welt wurde nicht von heute auf morgen kleiner. Sie schrumpfte in Etappen. Mit jedem Verlust verschwand ein weiteres Stück meines bisherigen Lebens.
Zum #SevereMEAwareness Day habe ich darüber geschrieben. 💙
pacing-mecfs.de/severe-me-aw...
#SevereME #MECFS
Zum #SevereMEAwareness Day habe ich darüber geschrieben. 💙
pacing-mecfs.de/severe-me-aw...
#SevereME #MECFS
ICYMI: Solve recently joined host Bateman Horne Center and #MEActionhttps://bsky.app/profile/did:plc:hedpcce7vylvdgibxuxjsuzb" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link" target="_blank" rel="noopener" data-link="bsky-mention">#MEAction Network, Open Medicine Foundation (OMF) & the WIMEL Writers for "Coffee with a Clinician" in honor of #SevereMEAwareness Month.
Watch the replay here:
https://ow.ly/x9Sy50ZGmU6
#UnitedForME
Watch the replay here:
https://ow.ly/x9Sy50ZGmU6
#UnitedForME
August 28, 2026 at 4:10 PM
ICYMI: Solve recently joined host Bateman Horne Center and #MEActionhttps://bsky.app/profile/did:plc:hedpcce7vylvdgibxuxjsuzb" class="hover:underline text-blue-600 dark:text-sky-400 no-card-link" target="_blank" rel="noopener" data-link="bsky-mention">#MEAction Network, Open Medicine Foundation (OMF) & the WIMEL Writers for "Coffee with a Clinician" in honor of #SevereMEAwareness Month.
Watch the replay here:
https://ow.ly/x9Sy50ZGmU6
#UnitedForME
Watch the replay here:
https://ow.ly/x9Sy50ZGmU6
#UnitedForME