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@tomkindlon.bsky.socialOct 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.socialOct 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.
@anilvanderzee.bsky.socialOct 8, 2026, 2:13 PM

Indrukwekkend stuk met Caroline Van Kessel door ellen de visser.

Sorry zou al een beginnetje zijn Sophie Hermans.

#QVS #LongCovid #lyme #postsepsis #pwme #myalgicE #millionsmissing #PAIZ #PAIS #IACI #IACC

www.volkskrant.nl/wetenschap/l...

@tomkindlon.bsky.socialOct 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

3
@chembarathi.northsky.socialOct 8, 2026, 1:51 PM

If anybody is looking for handmade gifts, please do checkout my Ko-Fi shop. There are some crocheted cuteness and lovely handknitted scarves and socks. I am running low on money and health at the moment. So please help me spread the word!!
International Shipping Available

#pwme #bsnm #helpsky🧶

@meassociation.org.ukOct 8, 2026, 12:46 PM

Nature: Safety of cardiopulmonary exercise testing in patients with severe post-COVID-19 condition: a matched case-control study

Read more, including comment from Dr Charles Shepherd, MEA Hon. Medical Adviser, on the blog: https://meassociation.org.uk/dijw

#MECFS #LongCovid #PostCovid #pwME #CPET

@katybrc.bsky.socialOct 8, 2026, 12:34 PM

#ME #pwME #MEAwareness
#MedSky

@irishmecfsassoc.bsky.socialOct 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

@keristars.bsky.socialOct 8, 2026, 2:31 AM

i think it's safe now to say: what the absolute heck.

the expected PEM from Thursday & Saturday has crept around the edges, but hasn't actually crashed in. what is going on?? I've got the hypersomnia/reversed sleep like it did happen, but little to no muscle weakness or pain.

#pwME

@stpaulsbay.bsky.socialOct 7, 2026, 11:44 PM

I don't know if anyone will ever realize how hard I fought to save people from a physical prison. I found the mechanism & recovery path for #MECFS, now in a peer-reviewed journal. Patients contact me saying they are better, yet it feels like yelling into a void. Please help amplify. 🧬💙 #pwME #rs5522

@tomkindlon.bsky.socialOct 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

@stpaulsbay.bsky.socialOct 7, 2026, 8:20 PM

#MECFS #LongCOVID #pwME #NEISvoid #Spoonie #LongCovidResearch #Genomics #OpenScience
#Biosky #Medsky

@tomkindlon.bsky.socialOct 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.socialOct 7, 2026, 7:46 PM

2/

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

@tomkindlon.bsky.socialOct 7, 2026, 7:42 PM

🧵
I’ve discovered if I lie down & put my feet up soon after I get up (see red in image), it recharges my body battery well, often at a better rate than when I was sleeping! If I do the same thing, later in the day (see green), I often see no increase in my body battery & often some decrease
#PwME
1/

Graph from body battery
@tessamunt.bsky.socialOct 7, 2026, 7:23 PM

👇🏽NB Helpful analysis and advice on the current Covid situation from @buds-disability.bsky.social. Remember that having Covid may bring long-term complications. And the data is that 50% of those with Long Covid develop ME-like symptoms.

So, be wise, be Covid cautious. 😷

#pwME #pwLC

@irishmecfsassoc.bsky.socialOct 7, 2026, 4:04 PM

A list we run for members of the Irish ME/CFS Association we thought we would plug.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Contact List (*optional*): Many ME/CFS “sufferers” +/or their carers/families express a desire to have contact with others in a similar situation. If you’re an ME/CFS sufferer, a carer/parent, spouse/partner, child or other relative/friend & you +/or any members of your family would like to have your/their name, phone no. (or other contact details) & (rough) address included in the Contact List (which will be printed in the group’s newsletter as well as being given to new members), please complete the details below. Phone numbers will be given by default but people can opt out of this part. You can also give an (optional) brief description of yourself (60 words or less) - ideas for this description include: your interests, hobbies, occupation (and occupation before you got ME/CFS if different), age, marital status, children, severity, tv/radio/music like, personality type, religion, Full address (if you want people to write to you), gender (if unclear e.g. Pat, Sam, etc.), best time(s) to call, E-mail/website/Twitter/Instagram/Tumblr/blog address, pets, Gaelgóir?, preferences for the sort of people you’d particularly like to hear from (e.g. age bracket), etc. (If you do not wish to have your name on the list or feel unable to be contacted by others, the list will still be available to you should you need support or a chat with someone) Names: 1 (and optional description) ....................................................................................................... ................................................................................................................................................................... ................................................................................................................................................................... 2): ............................................................................................................................................................. 3): ........…
@meassociation.org.ukOct 7, 2026, 3:31 PM

Get in touch today:
0808 801 0484
meconnect@meassociation.org.uk 

#pwME #LongCovid #SevereME

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