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@tomkindlon.bsky.socialSep 14, 2026, 12:13 AM

Trial By Error: Norway Disability Case Exposes Flaws in Draft Guideline for “Long-Term Fatigue–including ME/CFS”

virology.ws/2026/03/13/t...

Screenshot from September AMMES newsletter

#MEcfs #PwME #CFS #ME #MyalgicE

Image of somebody looking out over a long pier into an area of water Trial By Error: Norway Disability Case Exposes Flaws in Draft Guideline for “Long-Term Fatigue–including ME/CFS” The Norwegian ME Association recently posted an account by Schei of a hearing involving a young man’s effort to obtain disability benefits. The account makes for troubling reading. As Schei notes, “the case provided frightening perspectives on Nav’s view of ME”—specifically, that “the prognosis for ME was good, and that recovery from ME was about faith and hope and motivation.” Given that, any failure to get better can be interpreted as the patient’s fault. Read more here>>
@joyelephant.bsky.socialSep 13, 2026, 6:51 PM

247/365 "Overcome"
2x3in/5x7.6cm
#2026tinyart
Every day climbing mountains of exhaustion with moments of pain
#BlueSkyArtShow #tradart #watercolor #tinyart #smArtist #arttherapy
#mixedmedia52 #cfs #chronicfatigue #chronicillness

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@cfscounselling.bsky.socialSep 12, 2026, 8:49 PM

We're exactly one week away from #theGrandParadeBarrie! It's not too late to sign up to walk, volunteer OR donate. Come join us at https://thegrandparade.org/location/barrie #CFS #TheFutureIsOld #HopeLivesHere #TheGrandParade

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@tomkindlon.bsky.socialSep 12, 2026, 5:39 PM

5/

Thanks to anyone who has liked and/or reposted my LinkedIn post. It now has over 5000 impressions so hopefully has educated quite a number of people about it.

#MEcfs #CFS

@meownersclub.bsky.socialSep 12, 2026, 6:41 AM

Here it is - I’d call this tweet on X from one of the BPSM crowd a significant moment in the debates
around whether #ME aand #cfs are the same illness.

Copy of posts made by various authors
@tomkindlon.bsky.socialSep 11, 2026, 7:41 PM

Media gaslighting = patient harm

chroniclivingtherapy.com/brain-retrai...

Screenshot from latest edition of the Chronic Living Therapy @chronicliving123.bsky.social email bulletin

#MEcfs #PwME #LongCovid #CFS #chronicillness @lammasleaves.bsky.social

Photo of someone looking confused with the following text Media gaslighting = patient harm Recently the i newspaper in the UK published a gushing article about a not-yet-even-published piece of non-medical academic research into 75 people who 'recovered' from 'CFS' with various 'brain retraining' programmes. (Sorry about all the 'speech marks' but there's no other way to write about it...) The research has been challenged from several well-informed quarters already. It made me think of the harm that is done to patients when we and our families and friends read such publicity. I saw some other patients on social media commenting and reached out. Kirsty, a patient who has had ME/CFS since the 1990sl, responded by writing about how reading such articles has affected her and those around her. Read 'Brain Retraining Merry-go-round'
@cfscounselling.bsky.socialSep 11, 2026, 7:00 PM

Wondering where you can book your counselling session for Men's Counselling Link? We have you covered: https://cfssc.ca/about-us/mens-counselling-link. #CFS #MCL #HopeLivesHere #Collingwood #Barrie #SimcoeCounty #Muskoka

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@cfscounselling.bsky.socialSep 11, 2026, 2:01 PM

The best time to access help is now and #CFS works to make it easy. To book a free virtual or in-person session through our Men's Counselling Link program, visit https://tinyurl.com/yzpb6vz6. #HopeLivesHere #MCL

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@haebin.bsky.socialSep 11, 2026, 12:24 PM

I had one day - yesterday - where I felt okay. The pains were bearable. In the evening I got strong headaches + nerve pains in my leg. Woke up with the same amount of pains...
-sigh-
I am tired of this.

#chronicpain #fibromyalgia #fms #cfs

@framecad.bsky.socialSep 10, 2026, 8:48 PM

Learn more about FRAMECAD Steelwise software

Discover how to lay out floor joists using the Blocking Bearer Method in this how-to video.
hubs.li/Q04x5YvK0

#FramecadHowToVideos #ConstructionSoftware #EngineeringSoftware #Construction #CFS #CFSteel #SteelFraming #LGS

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@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.
@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

@cfscounselling.bsky.socialSep 9, 2026, 9:01 PM

In all honesty, this really COULD be you! Sign up to participate THIS Saturday for The Grand Parade Barrie. #CFS #TheFutureIsOld #HopeLivesHere #TheGrandParade #TheGrandParadeBarrie

@framecad.bsky.socialSep 9, 2026, 8:58 PM

Steel's light weight nature makes it easier to handle and transport to construction sites, leading to faster construction times, reduced labor costs and shorter project timelines.

#CFSteelFacts #Construction #CFS #CFSteel #SteelFraming #Prefab
framecad.com/steel-framin...

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@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.
@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

@tomkindlon.bsky.socialSep 9, 2026, 2:53 PM

2/
I very rarely post on LinkedIn these days but decided to do a longer post today on this.

With a lot of researchers posting less often if at all on X, more are communicating via LinkedIn.

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Tom KindlonTom Kindlon • YouYou Assistant chairperson, Irish ME/CFS AssociationAssistant chairperson, Irish ME/CFS Association 8m • 8 minutes ago • Visible to anyone on or off LinkedIn Today marks the 10th anniversary of a little known but important anniversary in the ME/CFS world. Ten years ago a psychiatrist, Peter White, of Queen’s University of London was forced to release some data from the PACE Trial he led which cost £5 million of UK taxpayers’ money (funding was received approximately two decades ago so it is the equivalent of around £9 million today). The investigators themselves dubbed this the “definitive” trial of graded exercise therapy and cognitive behaviour therapy for CFS. The data revealed, using the definition for the recovery the investigators committed to in their own published protocol, that neither CBT nor graded exercise therapy led to an increased rate of recovery. The PACE Trial investigators had been desperate for this data not to be released, with over £200,000 spent on legal fees fighting a Freedom of Information request from an Australian patient, Alem Matthees. Like many of us, Alem was desperate to get the data rather than relying on the very questionnable spin/hype the investigators had been presenting. The PACE Trial investigators had vigorously, successfully fought other FOI requests relating to the recovery data. Alem effectively became an FOI expert and in a David-vs-Goliath battle, he won the case. Unfortunately all the effort badly affected his health and he has been bedbound with very severe ME since. Anyway the data allowed a team including myself to reanalyse the trial. The image is a screenshot from our main reanalysis paper. This FOI case and subsequent reanalyses played a significant part in guidelines for ME/CFS being changed in the UK and elsewhere. A lot more could have been said but I thought I would keep it brief for busy LinkedIn users.
@haebin.bsky.socialSep 9, 2026, 2:10 PM

Sunday night I was in so much pain (chest) that I had to call the paramedics. It was a pinched nerve.
On Monday I got my period and have to deal with the strongest cramps I ever had.
What the fuck is going on with my body and can I please have a break??

#fms #chronicpain #cfs

@tomkindlon.bsky.socialSep 8, 2026, 11:15 PM

10 years today, after a David vs Goliath FOI legal battle that damaged Alem Mathees, White et al were forced to release data from PACETrial (that cost UK taxpayers £5M) showing graded exercise therapy & CBT didn’t lead to an increased recovery rate for CFS.

Please remind the world
#MEcfs #PwME #CFS

Rethinking the treatment of chronic fatigue syndrome-a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT Carolyn E Wilshire 1 , Tom Kindlon 2 , Robert Courtney 3 , Alem Matthees 4 , David Tuller 5 , Keith Geraghty 6 , Bruce Levin 7 Affiliations Expand PMID: 29562932 PMCID: PMC5863477 DOI: 10.1186/s40359-018-0218-3 Abstract Background: The PACE trial was a well-powered randomised trial designed to examine the efficacy of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for chronic fatigue syndrome. Reports concluded that both treatments were moderately effective, each leading to recovery in over a fifth of patients. However, the reported analyses did not consistently follow the procedures set out in the published protocol, and it is unclear whether the conclusions are fully justified by the evidence. Methods: Here, we present results based on the original protocol-specified procedures. Data from a recent Freedom of Information request enabled us to closely approximate these procedures. We also evaluate the conclusions from the trial as a whole.