explore | Grilled Cheese

@tomkindlon.bsky.social Oct 8, 2026, 3:34 PM

4/
Another extract that quotes me from "Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis" by @chloedecanson.bsky.social

#MEcfs #PwME #CFS #epatient #MyalgicEncephalomyelitis

Lay scientists do not merely criticise existing institutional research on the disease, but also produce their own. In this way, they produce not only extitutional, but also what they have called patient-led and what we might call more generally lay-led science (McCorkell et al., 2021). They produce, sometimes in collaboration with institutional scientists, new studies, review articles, opinion pieces, and conceptual-definitional groundwork, which they publish in scientific journals.30
I devoted considerable time and energy in writing a narrative review of the reporting of harms associated with graded exercise therapy and cognitive behaviour therapy in ME/CFS. This included collating data from patient surveys, data which generally had never been submitted to the peer-reviewed literature. I subsequently published other papers on the topic of the safety of graded activity therapies and harms reporting, along with reanalyses of the PACE Trial, a major UK trial which was designed to be the definitive assessment of CBT and graded exercise therapy for CFS. (Tom Kindlon)

@tomkindlon.bsky.social Oct 8, 2026, 2:45 PM

New from the US

searchMECFS: An Online, Interactive Platform to Facilitate Secondary Use of Biospecimens and Associated Research Data From Myalgic Encephalomyelitis Studies

doi.org/10.3768/rtip...

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Abstract
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex,
debilitating disease affecting multiple body systems, with no established biomarkers
for diagnosis or treatment. This publication introduces searchMECFS, a free, interactive
online platform developed by the Data Management and Coordinating Center of the
ME/CFS Research Network, with funding from the National Institutes of Health. The
platform’s purpose is to facilitate the secondary use of biospecimens and associated
research data from ME/CFS clinical studies by improving accessibility, visibility, and
sharing of these resources. Currently, searchMECFS facilitates access to biospecimens
and associated data from two studies: The Chronic Fatigue Initiative study, funded
by the Hutchins Family Foundation, and the Multi-Site Clinical Assessment of ME/
CFS study, funded by the Centers for Disease Control and Prevention. Users can query
participant demographics and clinical information and request available biospecimens
through an application process. Eight specimen types are currently available,
though availability varies by study. The results highlight a case where a researcher
used the searchMECFS platform to identify 40 serum samples, which contributed to
published research on circadian rhythm disruption in ME/CFS. searchMECFS aims to
accelerate scientific discovery within the ME/CFS research community by improving
biospecimen utilization, fostering data sharing, and supporting collaboration.

@tomkindlon.bsky.social Oct 8, 2026, 2:13 PM

From the popular Diploma Duck account on IG, FB and probably elsewhere

“ME/CFS (explained by ducks)” (58 seconds)

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #PEM

@irishmecfsassoc.bsky.social Oct 8, 2026, 9:43 AM

We have given €54,000 from our research fund to the Solve ME/CFS Initiative over the years.
#MEcfs #CFS #PwME

@tomkindlon.bsky.social Oct 7, 2026, 10:31 PM

6/
Some people with ME/CFS complain they can feel groggy in the morning. But maybe rather than fight, it could be welcomed as an opportunity to get good rest?

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@tomkindlon.bsky.social Oct 7, 2026, 8:10 PM

5/
Somebody elsewhere asked about what "feet up" means in this case:

So I am lying on a couch with my feet on top of cushions which are on top of the elevated end of a couch

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

@tomkindlon.bsky.social Oct 7, 2026, 7:58 PM

3/
This screenshot is from today. My sleep is often longer and a bit more restorative and usually my body battery is lower by the time i go to sleep but the same principle applies.

#CFS #ChronicFatigueSyndrome

@tomkindlon.bsky.social Oct 7, 2026, 7:46 PM

I have noticed this pattern for last month.

I think of it as a continuation of my sleep even though I spend some of the time mentally active, reading and on social media, alternating with some time listening to music.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

@cfscounselling.bsky.social Oct 7, 2026, 7:00 PM

Do you want to avoid the next crisis? Let's talk. #CFS offers counselling services specifically designed for those who identify as men. Book your free session, online or in-person today at https://tinyurl.com/yzpb6vz6 #CFS #MCL #SaferSpaces #HopeLivesHere