Restless Sands
@restlesssands.bsky.social
Myalgic Encephalomyelitis 🔰
Patient advocate 🔰
Championing biological science over dogma 🔰
International Consensus Criterion #ICC 🔰
90% homebound to manage moderate ME. Acute onset, post viral 2012 🔰
Patient advocate 🔰
Championing biological science over dogma 🔰
International Consensus Criterion #ICC 🔰
90% homebound to manage moderate ME. Acute onset, post viral 2012 🔰
8 Products That Can Bring Comfort to Life www.nytimes.com/2025/08/28/s...
#AssistiveTech 💡
#MyalgicEncephalomyelitis
#LongCovid
#AssistiveTech 💡
#MyalgicEncephalomyelitis
#LongCovid
8 Products That Can Bring Comfort to Life
www.nytimes.com
September 2, 2025 at 9:08 PM
8 Products That Can Bring Comfort to Life www.nytimes.com/2025/08/28/s...
#AssistiveTech 💡
#MyalgicEncephalomyelitis
#LongCovid
#AssistiveTech 💡
#MyalgicEncephalomyelitis
#LongCovid
@erinmg.bsky.social Hi Erin, I’d like to ask you to join a SevereME/LC Awareness webinar panel on 30/08/25. Unsure how to navigate in this platform but hope you see this and may respond for details.
Kindly, Sandra
ME Group Australia
Kindly, Sandra
ME Group Australia
July 30, 2025 at 12:56 PM
@erinmg.bsky.social Hi Erin, I’d like to ask you to join a SevereME/LC Awareness webinar panel on 30/08/25. Unsure how to navigate in this platform but hope you see this and may respond for details.
Kindly, Sandra
ME Group Australia
Kindly, Sandra
ME Group Australia
Reposted by Restless Sands
. @michelleb4.bsky.social of @physiosforme.bsky.social gave a talk hosted by the Sheffield ME and FM group on 20th May titled: Using national & international best practice to improve services locally with special mention of physiotherapy. 1 hour.
www.youtube.com/watch?v=Y-M-...
#MEcfs #PwME #CFS
www.youtube.com/watch?v=Y-M-...
#MEcfs #PwME #CFS
A talk from Dr Michelle Bull - Physios for ME
YouTube video by Sheffield ME & Fibromyalgia Group
www.youtube.com
June 1, 2025 at 11:34 AM
. @michelleb4.bsky.social of @physiosforme.bsky.social gave a talk hosted by the Sheffield ME and FM group on 20th May titled: Using national & international best practice to improve services locally with special mention of physiotherapy. 1 hour.
www.youtube.com/watch?v=Y-M-...
#MEcfs #PwME #CFS
www.youtube.com/watch?v=Y-M-...
#MEcfs #PwME #CFS
Reposted by Restless Sands
I’m an ambulatory wheelchair user myself.
May 28, 2025 at 8:36 PM
I’m an ambulatory wheelchair user myself.
Post Exertional Symptom Exacerbation #PESE or #PEM explained really well. Show you clinicians 💙
#MyalgicEncephalomyelitis
#LongCovid
#MEAwarenessMonth
youtube.com/watch?v=tcXn...
#MyalgicEncephalomyelitis
#LongCovid
#MEAwarenessMonth
youtube.com/watch?v=tcXn...
Implementing Pacing to Prevent PEM - Dr. Todd E. Davenport
YouTube video by The ME Action Network
youtube.com
May 14, 2025 at 10:08 AM
Post Exertional Symptom Exacerbation #PESE or #PEM explained really well. Show you clinicians 💙
#MyalgicEncephalomyelitis
#LongCovid
#MEAwarenessMonth
youtube.com/watch?v=tcXn...
#MyalgicEncephalomyelitis
#LongCovid
#MEAwarenessMonth
youtube.com/watch?v=tcXn...
Reposted by Restless Sands
Stand By ME/CFS!
Please take a look at my Stand By ME/CFS video: youtu.be/s9cMmFDI4rk
And become an ally in 2025!
With gratitude, Cynthia 💛
#StandByMEcfs #GlobalVoiceForME #TeachMETreatME
#StillSickStillFighting #MillionsMissing #ForgetMEnot #MEcfs #MyalgicEncephalomyelitis #EndMEcfs
Please take a look at my Stand By ME/CFS video: youtu.be/s9cMmFDI4rk
And become an ally in 2025!
With gratitude, Cynthia 💛
#StandByMEcfs #GlobalVoiceForME #TeachMETreatME
#StillSickStillFighting #MillionsMissing #ForgetMEnot #MEcfs #MyalgicEncephalomyelitis #EndMEcfs
Stand By ME/CFS | Cynthia Johnson, Edge Prize 2023
YouTube video by The Edge Prize
youtu.be
April 5, 2025 at 1:40 AM
Stand By ME/CFS!
Please take a look at my Stand By ME/CFS video: youtu.be/s9cMmFDI4rk
And become an ally in 2025!
With gratitude, Cynthia 💛
#StandByMEcfs #GlobalVoiceForME #TeachMETreatME
#StillSickStillFighting #MillionsMissing #ForgetMEnot #MEcfs #MyalgicEncephalomyelitis #EndMEcfs
Please take a look at my Stand By ME/CFS video: youtu.be/s9cMmFDI4rk
And become an ally in 2025!
With gratitude, Cynthia 💛
#StandByMEcfs #GlobalVoiceForME #TeachMETreatME
#StillSickStillFighting #MillionsMissing #ForgetMEnot #MEcfs #MyalgicEncephalomyelitis #EndMEcfs
#MEAwarenessMonth #MyalgicEncephalomyelitis #LongCovid
#bringMEoutoftheSHADOWS
youtu.be/56u6g0POvo0?...
…It's a beautiful world we live in
A sweet romantic place
Beautiful people everywhere
The way they show they care
Makes me want to say
It's a beautiful world
For you
It's not for #ME
#bringMEoutoftheSHADOWS
youtu.be/56u6g0POvo0?...
…It's a beautiful world we live in
A sweet romantic place
Beautiful people everywhere
The way they show they care
Makes me want to say
It's a beautiful world
For you
It's not for #ME
Devo - "Beautiful World"
YouTube video by Edgar Aldrett
youtu.be
May 9, 2025 at 5:08 AM
#MEAwarenessMonth #MyalgicEncephalomyelitis #LongCovid
#bringMEoutoftheSHADOWS
youtu.be/56u6g0POvo0?...
…It's a beautiful world we live in
A sweet romantic place
Beautiful people everywhere
The way they show they care
Makes me want to say
It's a beautiful world
For you
It's not for #ME
#bringMEoutoftheSHADOWS
youtu.be/56u6g0POvo0?...
…It's a beautiful world we live in
A sweet romantic place
Beautiful people everywhere
The way they show they care
Makes me want to say
It's a beautiful world
For you
It's not for #ME
We have a letter urging Dr. Bhattacharya to allocate $50 million to fund the ME/CFS Research Roadmap.
Sign our new letter now: bit.ly/MEcfsRoadmap
#MEAwarenessMonth #bringMEoutoftheshadows
#MyalgicEncephalomyelitis
Sign our new letter now: bit.ly/MEcfsRoadmap
#MEAwarenessMonth #bringMEoutoftheshadows
#MyalgicEncephalomyelitis
May 8, 2025 at 4:47 AM
We have a letter urging Dr. Bhattacharya to allocate $50 million to fund the ME/CFS Research Roadmap.
Sign our new letter now: bit.ly/MEcfsRoadmap
#MEAwarenessMonth #bringMEoutoftheshadows
#MyalgicEncephalomyelitis
Sign our new letter now: bit.ly/MEcfsRoadmap
#MEAwarenessMonth #bringMEoutoftheshadows
#MyalgicEncephalomyelitis
New PLRC-funded work out from Rob Wust & team!
Skeletal muscles in #LongCovid and ME *differ* from skeletal muscles induced by bedrest.
LC and ME is not deconditioning! 1/
www.medrxiv.org/content/10.1...
Skeletal muscles in #LongCovid and ME *differ* from skeletal muscles induced by bedrest.
LC and ME is not deconditioning! 1/
www.medrxiv.org/content/10.1...
Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest
Patients with long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) suffer from a reduced exercise capacity, skeletal muscle abnormalities and post-exertional malaise (PEM), where...
www.medrxiv.org
May 7, 2025 at 3:02 AM
Reposted by Restless Sands
#MECFSAwarenessMonth – Day 6
1993-96: Wessely lobbied the UK government to reject ME as a neurological disorder and led an influential report that downplayed biomedical causes, pushed psychological treatments, and resulted in the virtual disappearance of ME for the next decade.
1993-96: Wessely lobbied the UK government to reject ME as a neurological disorder and led an influential report that downplayed biomedical causes, pushed psychological treatments, and resulted in the virtual disappearance of ME for the next decade.
May 6, 2025 at 6:09 AM
#MECFSAwarenessMonth – Day 6
1993-96: Wessely lobbied the UK government to reject ME as a neurological disorder and led an influential report that downplayed biomedical causes, pushed psychological treatments, and resulted in the virtual disappearance of ME for the next decade.
1993-96: Wessely lobbied the UK government to reject ME as a neurological disorder and led an influential report that downplayed biomedical causes, pushed psychological treatments, and resulted in the virtual disappearance of ME for the next decade.
Reposted by Restless Sands
Thank you @thesicktimes.bsky.social for featuring @johnvsjonvsme.bsky.social and to my lovely co-conspirators for writing this explainer!
#JohnVsJonVsME
#GreatestMEdicalScandal
#JohnVsJonVsME
#GreatestMEdicalScandal
In a crisis-filled world, breaking through the noise requires creativity, strategy — and, occasionally, a really good meme. This is why the #JohnVsJonVsME campaign began. bit.ly/4hTwUxa
April 1, 2025 at 8:10 PM
Thank you @thesicktimes.bsky.social for featuring @johnvsjonvsme.bsky.social and to my lovely co-conspirators for writing this explainer!
#JohnVsJonVsME
#GreatestMEdicalScandal
#JohnVsJonVsME
#GreatestMEdicalScandal
Karen Gordon: Update on UCLH decision to not provide home based IV feeding
Petition 🆘‼️ #Feed&SaveKarenGordon
meassociation.org.uk/hebr
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #SevereME #Malnutrition #TotalParenteralNutrition #TPN
www.facebook.com/share/p/1JDg...
Petition 🆘‼️ #Feed&SaveKarenGordon
meassociation.org.uk/hebr
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #SevereME #Malnutrition #TotalParenteralNutrition #TPN
www.facebook.com/share/p/1JDg...
Redirecting...
www.facebook.com
March 12, 2025 at 8:52 PM
Karen Gordon: Update on UCLH decision to not provide home based IV feeding
Petition 🆘‼️ #Feed&SaveKarenGordon
meassociation.org.uk/hebr
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #SevereME #Malnutrition #TotalParenteralNutrition #TPN
www.facebook.com/share/p/1JDg...
Petition 🆘‼️ #Feed&SaveKarenGordon
meassociation.org.uk/hebr
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #SevereME #Malnutrition #TotalParenteralNutrition #TPN
www.facebook.com/share/p/1JDg...
www.facebook.com/share/18Xpww...
#MyalgicEncephalomyelitis #ScopingSurvey #NewGuideLines commentary by David Tuller
#MyalgicEncephalomyelitis #ScopingSurvey #NewGuideLines commentary by David Tuller
Redirecting...
www.facebook.com
March 6, 2025 at 3:05 AM
www.facebook.com/share/18Xpww...
#MyalgicEncephalomyelitis #ScopingSurvey #NewGuideLines commentary by David Tuller
#MyalgicEncephalomyelitis #ScopingSurvey #NewGuideLines commentary by David Tuller
Reposted by Restless Sands
🚨BREAKING. From a program officer at the National Science Foundation, a list of keywords that can cause a grant to be pulled. I will be sharing screenshots of these keywords along with a decision tree. Please share widely. This is a crisis for academic freedom & science.
February 4, 2025 at 1:26 AM
🚨BREAKING. From a program officer at the National Science Foundation, a list of keywords that can cause a grant to be pulled. I will be sharing screenshots of these keywords along with a decision tree. Please share widely. This is a crisis for academic freedom & science.
“Very Severe ME patient Line aged 26 from Denmark (@nebulow on IG) has appealed to the international ME and Long Covid community to help prevent her being involuntarily removed to a psychiatric hospital from the nursing home she has been living in for the past 10 months.”
bit.ly/linepetition
Please read and share everywhere.. the importance of this such a huge priority.. all eyes on link..
#mecfs #mecfsawareness #mecfswarrior #MyalgicE #MEcfs #pwME
#SevereME #MillionsMissing #CanYouSeeMEnow
#EndMEcfs #MillionsMissingSpeakOut #MillionsMore #MyalgicEncephalomyelitis
Please read and share everywhere.. the importance of this such a huge priority.. all eyes on link..
#mecfs #mecfsawareness #mecfswarrior #MyalgicE #MEcfs #pwME
#SevereME #MillionsMissing #CanYouSeeMEnow
#EndMEcfs #MillionsMissingSpeakOut #MillionsMore #MyalgicEncephalomyelitis
Sign the Petition
Prevent forced psychiatric hospitalisation of Very Severe ME patient in Denmark
bit.ly
January 22, 2025 at 10:33 AM
“Very Severe ME patient Line aged 26 from Denmark (@nebulow on IG) has appealed to the international ME and Long Covid community to help prevent her being involuntarily removed to a psychiatric hospital from the nursing home she has been living in for the past 10 months.”
Reposted by Restless Sands
Health Rising: 'A “Scarred Landscape” … Epigenetic T-Cell Study Moves the ME/CFS Field Forward'
"...the authors wrote that “validating T-cell exhaustion in ME/CFS could open the door to the use of drugs that can return them to proper functioning”
www.healthrising.org/blog/2025/01...
"...the authors wrote that “validating T-cell exhaustion in ME/CFS could open the door to the use of drugs that can return them to proper functioning”
www.healthrising.org/blog/2025/01...
A "Scarred Landscape" ... Epigenetic T-Cell Study Moves the ME/CFS Field Forward - Health Rising
Evidence indicating that the T-cells in ME/CFS are exhausted could lead to new treatment options.
www.healthrising.org
January 15, 2025 at 10:31 PM
Health Rising: 'A “Scarred Landscape” … Epigenetic T-Cell Study Moves the ME/CFS Field Forward'
"...the authors wrote that “validating T-cell exhaustion in ME/CFS could open the door to the use of drugs that can return them to proper functioning”
www.healthrising.org/blog/2025/01...
"...the authors wrote that “validating T-cell exhaustion in ME/CFS could open the door to the use of drugs that can return them to proper functioning”
www.healthrising.org/blog/2025/01...
Reposted by Restless Sands
A great interview with @violetblue.bsky.social. Her Covid Safety Handbook covers Covid boundaries in such a terrific and helpful way, with lots of incredibly useful sample scripts and templates for those conversations. www.barnesandnoble.com/w/the-covid-...
January 14, 2025 at 7:47 PM
A great interview with @violetblue.bsky.social. Her Covid Safety Handbook covers Covid boundaries in such a terrific and helpful way, with lots of incredibly useful sample scripts and templates for those conversations. www.barnesandnoble.com/w/the-covid-...