@valebodi.bsky.social
Surviving MyalgicE, AAG & CVID to tell the story, patient & advocate w/ a JD. Into MEdical, Social & Climate Justice & Arts. Human neutrino/ PwME = ME apolide/ Gnarled pacer. MEssLand Worldwide https://www.tandfonline.com/doi/pdf/10.2217/fmb-2022-0031
Pinned
The CFS-CARE study showed:
After inpatient #rehabilitation
44% experienced a worsening of symptoms,
only 13% showed improvement
in the #Bell score.
Furthermore, there were no effects on fatigue, pain, or cognition.
This is not merely a null result; the data show:
Rehabilitation is a risk for serious
After inpatient #rehabilitation
44% experienced a worsening of symptoms,
only 13% showed improvement
in the #Bell score.
Furthermore, there were no effects on fatigue, pain, or cognition.
This is not merely a null result; the data show:
Rehabilitation is a risk for serious
January 24, 2026 at 11:22 PM
The CFS-CARE study showed:
After inpatient #rehabilitation
44% experienced a worsening of symptoms,
only 13% showed improvement
in the #Bell score.
Furthermore, there were no effects on fatigue, pain, or cognition.
This is not merely a null result; the data show:
Rehabilitation is a risk for serious
After inpatient #rehabilitation
44% experienced a worsening of symptoms,
only 13% showed improvement
in the #Bell score.
Furthermore, there were no effects on fatigue, pain, or cognition.
This is not merely a null result; the data show:
Rehabilitation is a risk for serious
At the conclusion of the #LongCare conference on January 22, 2026, in Berlin,
a clear message:
For #PEM #MECFS,
no #rehabilitation.
@scheibenbogen.bsky.social presented the CFS-CARE data.
Primary endpoint (SF-36 physical function, 12 months):
no significant difference,
no improvements
no benefit
a clear message:
For #PEM #MECFS,
no #rehabilitation.
@scheibenbogen.bsky.social presented the CFS-CARE data.
Primary endpoint (SF-36 physical function, 12 months):
no significant difference,
no improvements
no benefit
January 24, 2026 at 11:18 PM
At the conclusion of the #LongCare conference on January 22, 2026, in Berlin,
a clear message:
For #PEM #MECFS,
no #rehabilitation.
@scheibenbogen.bsky.social presented the CFS-CARE data.
Primary endpoint (SF-36 physical function, 12 months):
no significant difference,
no improvements
no benefit
a clear message:
For #PEM #MECFS,
no #rehabilitation.
@scheibenbogen.bsky.social presented the CFS-CARE data.
Primary endpoint (SF-36 physical function, 12 months):
no significant difference,
no improvements
no benefit
Reposted
"The children are always ours, every single one of them, all over the globe; and I am beginning to suspect that whoever is incapable of recognizing this may be incapable of morality."
-James Baldwin, from Notes on the House of Bondage (The Nation, 1980)
#everynightapoem #ofsorts
-James Baldwin, from Notes on the House of Bondage (The Nation, 1980)
#everynightapoem #ofsorts
January 24, 2026 at 1:26 AM
"The children are always ours, every single one of them, all over the globe; and I am beginning to suspect that whoever is incapable of recognizing this may be incapable of morality."
-James Baldwin, from Notes on the House of Bondage (The Nation, 1980)
#everynightapoem #ofsorts
-James Baldwin, from Notes on the House of Bondage (The Nation, 1980)
#everynightapoem #ofsorts
Reposted
The Relation Between Cardiac Output and Cerebral Blood Flow in ME/CFS Patients with a POTS Response During a Tilt Test
www.mdpi.com/2077-0383/14...
Screenshot from the January 2026 AMMES newsletter
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #POTS #OrthostaticIntolerance
www.mdpi.com/2077-0383/14...
Screenshot from the January 2026 AMMES newsletter
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #POTS #OrthostaticIntolerance
![Photo of somebody having a tilt table test
The Relation Between Cardiac Output and Cerebral Blood Flow in ME/CFS Patients with a POTS Response During a Tilt Test
In ME/CFS patients with POTS during tilt testing with measurements of both the CO [cardiac output] and the CBF [cerebral blood flow], two different patterns were observed: 1) appr. two-thirds of patients had an almost 1:1 relation between the %CBF reduction and the %CO reduction. This CBF reduction is abnormal, as in healthy controls the CBF reduction for a given CO reduction varies between 1:3 and 2:3, and may indicate endothelial dysfunction with an inability of cerebral vessels to adequately dilate in the presence of a CO reduction. Appr. one-third of patients showed a limited reduction in CO together with a substantial increase in HR. In these patients, there was no relation between the CO and CBF reduction. These data suggest the presence of a hyperadrenergic response. If this mechanism is proven by norepinephrine levels, the CO is a robust measure to distinguish between hyperadrenergic and non-hyperadrenergic responses.
Read more here>>](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:43rudsv62fuwsmnk7oppgtdy/bafkreigp7tofmfyfm3xgmgohtg5gpmm6tdb7sbxqrrlwgikdkidezasua4@jpeg)
January 24, 2026 at 1:31 AM
The Relation Between Cardiac Output and Cerebral Blood Flow in ME/CFS Patients with a POTS Response During a Tilt Test
www.mdpi.com/2077-0383/14...
Screenshot from the January 2026 AMMES newsletter
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #POTS #OrthostaticIntolerance
www.mdpi.com/2077-0383/14...
Screenshot from the January 2026 AMMES newsletter
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #POTS #OrthostaticIntolerance
We recently published the linear relation between CO and #CBF in #ME/CFS patients and in healthy controls, both with a normal tilt (normal HR [HR] and blood pressure [BP]). The results showed that in a large majority of ME/CFS patients, the relation between CO and CBF is abnormal and significantly
www.mdpi.com
January 24, 2026 at 1:43 AM
How is a nationwide care structure for young people with #ME/CFS and Long COVID being created?
Prof. Dr. Uta Behrends explains in the PEDNET-LC project how a network of 20 locations is connecting care, research, and knowledge about post-viral diseases across Germany.
@mecfsresearch.bsky.social
Prof. Dr. Uta Behrends explains in the PEDNET-LC project how a network of 20 locations is connecting care, research, and knowledge about post-viral diseases across Germany.
@mecfsresearch.bsky.social
Wie entsteht eine bundesweite Versorgungsstruktur für junge Menschen mit ME/CFS & Long COVID?
Prof. Dr. Uta Behrends erklärt im Projekt PEDNET-LC, wie ein Netzwerk aus 20 Standorten Versorgung, Forschung & Wissen zu postviralen Erkrankungen bundesweit verbindet.
Prof. Dr. Uta Behrends erklärt im Projekt PEDNET-LC, wie ein Netzwerk aus 20 Standorten Versorgung, Forschung & Wissen zu postviralen Erkrankungen bundesweit verbindet.
January 24, 2026 at 1:36 AM
How is a nationwide care structure for young people with #ME/CFS and Long COVID being created?
Prof. Dr. Uta Behrends explains in the PEDNET-LC project how a network of 20 locations is connecting care, research, and knowledge about post-viral diseases across Germany.
@mecfsresearch.bsky.social
Prof. Dr. Uta Behrends explains in the PEDNET-LC project how a network of 20 locations is connecting care, research, and knowledge about post-viral diseases across Germany.
@mecfsresearch.bsky.social
Reposted
This article is worth reading very carefully.
People need to know that according to those proposals, if they fall ill and are not able to return to work long-term, there will be nothing for them apart from basic benefits to keep them alive. Poverty and misery. On top of illness.
#LongCovid
#ME
People need to know that according to those proposals, if they fall ill and are not able to return to work long-term, there will be nothing for them apart from basic benefits to keep them alive. Poverty and misery. On top of illness.
#LongCovid
#ME
This comes on top of the UK government not giving any new money towards #myalgicencephalomyelitis, whereas the German government is giving hundreds of millions of €.
Repellent.
#LongCovid
@ashleydaltonmp.bsky.social
Repellent.
#LongCovid
@ashleydaltonmp.bsky.social
Long-term claimants of employment and support allowance could be moved over to a new, time-limited disability benefit – equating to cuts.
January 23, 2026 at 3:38 PM
This article is worth reading very carefully.
People need to know that according to those proposals, if they fall ill and are not able to return to work long-term, there will be nothing for them apart from basic benefits to keep them alive. Poverty and misery. On top of illness.
#LongCovid
#ME
People need to know that according to those proposals, if they fall ill and are not able to return to work long-term, there will be nothing for them apart from basic benefits to keep them alive. Poverty and misery. On top of illness.
#LongCovid
#ME
Reposted
A gvt that does nothing for #pwME/LC in 2026 with everything we know is actually a gvt that actively is saying: we want you gone. Meaning, dead. This is not demagogical. In 2026, it is not only an economical and political reality, but a scientific and medical one.
This article is worth reading very carefully.
People need to know that according to those proposals, if they fall ill and are not able to return to work long-term, there will be nothing for them apart from basic benefits to keep them alive. Poverty and misery. On top of illness.
#LongCovid
#ME
People need to know that according to those proposals, if they fall ill and are not able to return to work long-term, there will be nothing for them apart from basic benefits to keep them alive. Poverty and misery. On top of illness.
#LongCovid
#ME
This comes on top of the UK government not giving any new money towards #myalgicencephalomyelitis, whereas the German government is giving hundreds of millions of €.
Repellent.
#LongCovid
@ashleydaltonmp.bsky.social
Repellent.
#LongCovid
@ashleydaltonmp.bsky.social
January 23, 2026 at 5:01 PM
A gvt that does nothing for #pwME/LC in 2026 with everything we know is actually a gvt that actively is saying: we want you gone. Meaning, dead. This is not demagogical. In 2026, it is not only an economical and political reality, but a scientific and medical one.
Reposted
What would become of a Greenland whale, say, in those shuddering, icy seas of the North, if unsupplied with his cosy surtout?
January 23, 2026 at 1:47 AM
What would become of a Greenland whale, say, in those shuddering, icy seas of the North, if unsupplied with his cosy surtout?
Reposted
I got very choked up in class today showing my students what James Baldwin had to say about Shakespeare:
“the greatest poet in the English language found his poetry where poetry is found: in the lives of the people. he could have done this only through love…”
“the greatest poet in the English language found his poetry where poetry is found: in the lives of the people. he could have done this only through love…”
January 21, 2026 at 7:57 PM
I got very choked up in class today showing my students what James Baldwin had to say about Shakespeare:
“the greatest poet in the English language found his poetry where poetry is found: in the lives of the people. he could have done this only through love…”
“the greatest poet in the English language found his poetry where poetry is found: in the lives of the people. he could have done this only through love…”
Reposted
Neuroinflammation and M.E.: A Conversation with Professor Anthony Komaroff
#ME/CFS #Neuroinflammation
#ME/CFS #Neuroinflammation
DISCUSSION: Neuroinflammation and ME: A Conversation with Professor Anthony Komaroff
Scientific views on the causes of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) symptomology generally converge on a multi-system biological dysfunction, though they emphasize different ...
forums.phoenixrising.me
January 21, 2026 at 10:36 PM
Neuroinflammation and M.E.: A Conversation with Professor Anthony Komaroff
#ME/CFS #Neuroinflammation
#ME/CFS #Neuroinflammation
People should know about ME/CFS, just as MS, Parkinson’s, and diabetes are common knowledge. When ME patients disclose their illness, they are often met with comments such as “I’m also tired”. Patients shouldn’t have to face such ignorance—it’s a severe illness. #MemE/CFS
@stenhelmfrid.bsky.social
@stenhelmfrid.bsky.social
January 21, 2026 at 8:05 PM
People should know about ME/CFS, just as MS, Parkinson’s, and diabetes are common knowledge. When ME patients disclose their illness, they are often met with comments such as “I’m also tired”. Patients shouldn’t have to face such ignorance—it’s a severe illness. #MemE/CFS
@stenhelmfrid.bsky.social
@stenhelmfrid.bsky.social
Reposted
Dr. David Tuller. Chronic Denial: “The psychosomatic interpretation of Long Covid recycles a discredited framework, one that has repeatedly failed patients with #MECFS.”
www.openmindmag.org/articles/goi...
www.openmindmag.org/articles/goi...
Chronic Denial
A debunked theory about chronic fatigue syndrome is being recycled to explain Long Covid—with troubling results.
www.openmindmag.org
May 28, 2025 at 8:33 AM
Dr. David Tuller. Chronic Denial: “The psychosomatic interpretation of Long Covid recycles a discredited framework, one that has repeatedly failed patients with #MECFS.”
www.openmindmag.org/articles/goi...
www.openmindmag.org/articles/goi...
Reposted
Fluge et al., pilot study on subcutaneous anti-CD38 antibody daratumumab in moderate to severe #MECFS. For six responders of ten patients, mean SF-36 PF increased from 32.2 to 78.3. Low NK-cell count was significantly associated with lack of response. www.frontiersin.org/journals/med...
Frontiers | Plasma cell targeting with the anti-CD38 antibody daratumumab in myalgic encephalomyelitis/chronic fatigue syndrome—a clinical pilot study
BackgroundMyalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) entails low quality of life for patients and massive societal costs. There is an urgent...
www.frontiersin.org
July 9, 2025 at 6:02 AM
Fluge et al., pilot study on subcutaneous anti-CD38 antibody daratumumab in moderate to severe #MECFS. For six responders of ten patients, mean SF-36 PF increased from 32.2 to 78.3. Low NK-cell count was significantly associated with lack of response. www.frontiersin.org/journals/med...
Reposted
Beentjes et al., comparison of traits for people with #MECFS and controls in UK Biobank data. Hundreds of traits differed between cases and controls, but single traits couldn’t distinguish case from control. The results cannot be explained by inactivity. www.embopress.org/doi/full/10....
Replicated blood-based biomarkers for myalgic encephalomyelitis not explicable by inactivity | EMBO Molecular Medicine
imageimageThere are no cellular or molecular biomarkers diagnostic of myalgic encephalomyelitis
(also known as chronic fatigue syndrome [ME/CFS]). We find hundreds of blood-based
traits are different,...
www.embopress.org
July 9, 2025 at 6:17 AM
Beentjes et al., comparison of traits for people with #MECFS and controls in UK Biobank data. Hundreds of traits differed between cases and controls, but single traits couldn’t distinguish case from control. The results cannot be explained by inactivity. www.embopress.org/doi/full/10....
Reposted
South African professional soccer player, Jethren Barr, who last played in Ireland is forced to retire from football due to ME/CFS
farpost.co.za/2026/01/17/w...
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
farpost.co.za/2026/01/17/w...
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
January 21, 2026 at 5:01 PM
South African professional soccer player, Jethren Barr, who last played in Ireland is forced to retire from football due to ME/CFS
farpost.co.za/2026/01/17/w...
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
farpost.co.za/2026/01/17/w...
#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
Reposted
January 21, 2026 at 4:07 PM
Reposted
Essential reading for everyone in the medical profession, regarding #longCOVID and the need to listen to patients. This one, by an MD, is going to get printed out and brought to a lot of appointments.
Also worth reflecting on the role of humility in "building the plane while we flew it".
#medsky
Also worth reflecting on the role of humility in "building the plane while we flew it".
#medsky
January 21, 2026 at 12:48 PM
Essential reading for everyone in the medical profession, regarding #longCOVID and the need to listen to patients. This one, by an MD, is going to get printed out and brought to a lot of appointments.
Also worth reflecting on the role of humility in "building the plane while we flew it".
#medsky
Also worth reflecting on the role of humility in "building the plane while we flew it".
#medsky
Reposted
Healthcare workers need to realize that the profession demanding you "push through" everything increasingly sees you as an assembly line worker, only there to mindlessly follow guidance from medicine's management class - and if #longCOVID stops you from doing that, you will be discarded too.
Healthcare Workers With Long COVID Struggle to Find Support
Some healthcare workers fail to recognize the symptoms of long COVID in themselves, says one physician.
www.medscape.com
January 21, 2026 at 1:08 PM
Healthcare workers need to realize that the profession demanding you "push through" everything increasingly sees you as an assembly line worker, only there to mindlessly follow guidance from medicine's management class - and if #longCOVID stops you from doing that, you will be discarded too.
When We Don’t Have All the Answers: Long COVID and the Need for Humility in Medicine
Liza Di Leo Thomas
Ochsner Journal September 2025, 25 (3) 152-158;
In these days of aggressive self-assertion, when the stress of competition is so keen and the desire to make the most of oneself so universal, it
Liza Di Leo Thomas
Ochsner Journal September 2025, 25 (3) 152-158;
In these days of aggressive self-assertion, when the stress of competition is so keen and the desire to make the most of oneself so universal, it
When We Don’t Have All the Answers: Long COVID and the Need for Humility in Medicine
> In these days of aggressive self-assertion, when the stress of competition is so keen and the desire to make the most of oneself so universal, it may seem a little old-fashioned to preach the necess...
www.ochsnerjournal.org
January 21, 2026 at 4:17 PM
When We Don’t Have All the Answers: Long COVID and the Need for Humility in Medicine
Liza Di Leo Thomas
Ochsner Journal September 2025, 25 (3) 152-158;
In these days of aggressive self-assertion, when the stress of competition is so keen and the desire to make the most of oneself so universal, it
Liza Di Leo Thomas
Ochsner Journal September 2025, 25 (3) 152-158;
In these days of aggressive self-assertion, when the stress of competition is so keen and the desire to make the most of oneself so universal, it
Reposted
3 years ago @ahandvanish.bsky.social, @lisamccorkell.bsky.social, @julialmv.bsky.social and I published a review on #LongCovid. Since then it has been downloaded nearly 2 million times and is #4 of >500,000 papers published since by @altmetric.com www.nature.com/articles/s41...
Long COVID: major findings, mechanisms and recommendations - Nature Reviews Microbiology
Long COVID is an often debilitating illness of severe symptoms that can develop during or following COVID-19. In this Review, Davis, McCorkell, Vogel and Topol explore our knowledge of long COVID and ...
www.nature.com
January 18, 2026 at 5:07 PM
3 years ago @ahandvanish.bsky.social, @lisamccorkell.bsky.social, @julialmv.bsky.social and I published a review on #LongCovid. Since then it has been downloaded nearly 2 million times and is #4 of >500,000 papers published since by @altmetric.com www.nature.com/articles/s41...
Reposted
2 million! The scale of people that this review reached is incredible
I can only imagine what the next 3 years of researching and publishing on Long COVID has in store for us 🎢
I can only imagine what the next 3 years of researching and publishing on Long COVID has in store for us 🎢
3 years ago @ahandvanish.bsky.social, @lisamccorkell.bsky.social, @julialmv.bsky.social and I published a review on #LongCovid. Since then it has been downloaded nearly 2 million times and is #4 of >500,000 papers published since by @altmetric.com www.nature.com/articles/s41...
Long COVID: major findings, mechanisms and recommendations - Nature Reviews Microbiology
Long COVID is an often debilitating illness of severe symptoms that can develop during or following COVID-19. In this Review, Davis, McCorkell, Vogel and Topol explore our knowledge of long COVID and ...
www.nature.com
January 20, 2026 at 5:14 PM
2 million! The scale of people that this review reached is incredible
I can only imagine what the next 3 years of researching and publishing on Long COVID has in store for us 🎢
I can only imagine what the next 3 years of researching and publishing on Long COVID has in store for us 🎢
Reposted
Happy Martin Luther King Day my friends: "I refuse to accept the view that mankind is so tragically bound to the starless midnight of racism and war."
Speech given on December 11, 1964 after being awarded the Nobel Peace Prize.
Speech given on December 11, 1964 after being awarded the Nobel Peace Prize.
January 19, 2026 at 6:14 PM
Happy Martin Luther King Day my friends: "I refuse to accept the view that mankind is so tragically bound to the starless midnight of racism and war."
Speech given on December 11, 1964 after being awarded the Nobel Peace Prize.
Speech given on December 11, 1964 after being awarded the Nobel Peace Prize.
Reposted
1) Solve ME/CFS (@PlzSolveCFS) has made an overview of researchers who were supported by a Ramsay grant and went on to win millions of research funding from other institutions.
So, the support of Solve might have acted like a stepping stone to bigger grants.
So, the support of Solve might have acted like a stepping stone to bigger grants.
January 17, 2026 at 8:50 AM
1) Solve ME/CFS (@PlzSolveCFS) has made an overview of researchers who were supported by a Ramsay grant and went on to win millions of research funding from other institutions.
So, the support of Solve might have acted like a stepping stone to bigger grants.
So, the support of Solve might have acted like a stepping stone to bigger grants.