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@meactnet.bsky.socialSep 11, 2026, 4:01 PM

MEAction is excited to be participating in Disability Voting Rights Week (DVRW) next week -Sept 14-18. Let’s get ready to vote!

It is a nonpartisan movement hosted by the AAPD - The American Association of People with Disabilities REV UP campaign.

#DisabilityVote #RevUp2026 #pwME

Disability Voting Rights Week from September 14-18, 2026. "Democracy is strongest when accessible to all! Blue background with white banners and red writing. Text at bottom: Disability Voting Rights Week (DVRW) is a nonpartisan movement hosted by the American Association of People with Disabilities and REV UP. MEAction proudly participates each year.
@meactnet.bsky.socialSep 11, 2026, 3:39 PM

Our Scientific Director Jaime Seltzer @exceedhergrasp1.bsky.social is at the Stanford ME/cfs Conference Community Symposium. Since today is open to the community, Seltzer will sharing in the thread below!

#pwME #MyalgicEncephalomyelitis #MECFS #LongCovid

@swastrosarah.bsky.socialSep 11, 2026, 3:10 PM

Great start to OMF symposium from Todd Davenport, setting the stage with #pwME at the centre

@swastrosarah.bsky.socialSep 11, 2026, 12:22 PM

outside the #ME bubble, this 'ultimately' is called a movement. If only #pwME and #LongCovid were not so terribly unwell, and not so unforgivably discriminated against, they would get out more.

@swastrosarah.bsky.socialSep 11, 2026, 10:57 AM

He is correct. The mess was made by others - many of them claiming to represent #pwME when they knew nothing about the illness - many still don't.

@andrewgiffordphoto.bsky.socialSep 11, 2026, 10:41 AM

From my photo project:

glass.photo/andrewgiffor...

ALT: colour photo of cluttered domestic corner, bags of rubbish, laundry spilling from basket, a yellow wall over-due repainting to a drab blue, green or stone

#MECFS #LongCovid #Covid19 #pwME #ChronicIllness #Photography

@swastrosarah.bsky.socialSep 11, 2026, 9:47 AM

They need a court order. There is no other method. As long as @england.nhs.uk withholds clinical guidance from NHS providers, Consultants can speculate & mentally torture #pwME with impunity.
Contact 39 Essex Chambers with an urgent request for immediate advice
Justice4ME.uk

@camillebuckner.bsky.socialSep 11, 2026, 6:51 AM

Community Symposium on the Molecular Basis of ME/CFS

Stanford Genome Technology Center

9/11 at 11:00am EDT

#MECFS #MECFSResearch #pwME
#MEAwareness #MillonsMissing

@tomkindlon.bsky.socialSep 10, 2026, 8:47 PM

New US research

Total blood volume and red blood cell volume are not associated with orthostatic intolerance in adults with myalgic encephalomyelitis/chronic fatigue syndrome

Free fulltext:
physoc.onlinelibrary.wiley.com/doi/10.14814...

#MEcfs #PwME #CFS #OrthostaticIntolerance

Abstract Orthostatic intolerance is common in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and may worsen daily functioning. Although hypovolemia has been proposed as a contributor, its relationship to objective orthostatic abnormalities remains uncertain. We examined whether measured blood-volume abnormalities were associated with standardized lean-test outcomes. Adults meeting the 1994 ME/CFS criteria and reporting substantial post-exertional malaise underwent a 10-min lean test with capnography, followed 8 days later by total blood volume (TBV) measurement using the Daxor BVA-100. Supine hypocapnia was defined as baseline end-tidal CO2 (eTCO2) <34 mmHg; postural orthostatic syndrome of hypocapnia (POSH) as normal supine eTCO2 with any leaning value <34 mmHg; and postural orthostatic tachycardia syndrome (POTS) as a heart-rate increase ≥30 beats/min or absolute heart rate ≥120 beats/min. Among 49 participants, TBV was hypovolemic in 35%, normovolemic in 43%, and hypervolemic in 22%; red blood cell volume was deficient in 49%. Overall, 55.1% had at least one lean-test abnormality, most commonly POSH (40.8%). Abnormalities did not differ by TBV or red blood cell volume category. Static blood-volume categories were not associated with lean-test-defined orthostatic abnormalities in ME/CFS, suggesting contributions from autonomic, vascular, respiratory, or cerebrovascular mechanisms.
@anilvanderzee.bsky.socialSep 10, 2026, 2:41 PM

For World Suicide Prevention Day. Adult patients affected by ME are at an increased risk of death by suicide, but as a health care professional you can help instead of harm.

#pwme #myalgicE #millionsmissing #severeME #suicidepreventionday

www.mdpi.com/2227-9032/9/...

Photo, no description
@tomkindlon.bsky.socialSep 10, 2026, 2:08 PM

4/
Here is a link to the LinkedIn post on this, if anyone wants to like it/react to it; comment on it; and/or repost it:
lnkd.in/p/dx3ptwiS

It already has over 2000 views so likely reaching outside the bubble.

#cfs #pwme #mecfs

@tomkindlon.bsky.socialSep 10, 2026, 11:16 AM

3/
The main re-analysis paper can be read for free here:
Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT
link.springer.com/article/10.1...

#mecfs #cfs #pwme

@tomkindlon.bsky.socialSep 10, 2026, 11:09 AM

4/

I see the paperback edition of this is now available.

#MEcfs #PwME

@katybrc.bsky.socialSep 10, 2026, 11:04 AM

A property inspector was here at my home earlier, I had to tell him that I have #ME began to explain it to him,
he told me that he knows all about it, he'd had a friend who had it, I asked how he was now, he told me that he died.
So many #pwME die having never received care or understanding

@mmissingaus.bsky.socialSep 10, 2026, 7:50 AM

It's probably not accessible for most #pwME anyway.

@tomkindlon.bsky.socialSep 9, 2026, 8:24 PM

“Trial By Error: A Study of The Switch, New Zealand’s Homegrown Version of the Lightning Process, Yields Meaningless Findings” By David Tuller @davetuller1.bsky.social

virology.ws/2026/09/09/t...

#MEcfs #LongCovid #Sceptic #Skeptic #CFS #PwME

Trial By Error: A Study of The Switch, New Zealand’s Homegrown Version of the Lightning Process, Yields Meaningless Findings Leave a Comment / By David Tuller / 9 September 2026 By David Tuller, DrPH The Switch is a New Zealand variant of the Lighting Process, the so-called “mind-body” intervention created by a Phil Parker, a British former faith healer who once declared that he had “this ability to step into other people’s bodies… to assist them in their healing with amazing results.” I don’t know whether Mel Abbott, founder of The Switch, possesses this unusual skill. Perhaps not. But she makes big promises for The Switch—as Parker does for the Lightning Process.
@corywysz.bsky.socialSep 9, 2026, 7:52 PM

Visible Achievement Unlocked. 2 pace to 3 points. This is borderline mythical. My energy was considerably lower than I thought, and even on my best days, getting to 2 points for the day was not possible, but inevitable.

#pacing #chronicillnessiswar #visible #pwme #cwyszzebralife

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@tomkindlon.bsky.socialSep 9, 2026, 5:36 PM

I’m sure I can speak for the PACE Trial investigators [Peter White, Michael Sharpe & Trudie Chalder] when I say they love when the re-analyses are highlighted online. 😜 #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome