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rikkapik.bsky.social
RikkaPik
@rikkapik.bsky.social
150 followers 340 following 330 posts
Suffering from ME/CFS, turning to art to keep (almost) sane. PTSD survior, broken brain lefty and demiace Gen X.
Posts Replies Media Videos
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tomkindlon.bsky.social
From Belgium:

"These data demonstrate that IgGs from long COVID patients bind to peripheral sensory neurons and induce pain-related symptoms in mice."

www.biorxiv.org/content/10.1...

Screenshot from latest Science for ME weekly update

#PostCovidSyndrome #LongCovid #PASC
Pathogenic IgG from long COVID patients with neurological sequelae triggers sensitive but not cognitive impairments upon transfer into mice — Mignolet et al. "These data demonstrate that IgGs from long COVID patients bind to peripheral sensory neurons and induce pain-related symptoms in mice."
December 4, 2025 at 2:46 AM
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galder.bsky.social
And the last supporter reward of the year is here. Jiraiya!

#feline #cat #reward #rewardart #digitalart
December 2, 2025 at 5:00 PM
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tomkindlon.bsky.social
From South Korea:

Distinct brain alterations and neurodegenerative processes in cognitive impairment associated with post-acute sequelae of COVID-19

www.nature.com/articles/s41...

Screenshot from latest Science for ME weekly update

#LongCovid #COVIDBrain #NeuroPASC
Distinct brain alterations and neurodegenerative processes in cognitive impairment associated with post-acute sequelae of COVID-19 — Seo et al. "The convergence of structural MRI findings and proteomic alterations in the Cog-PASC group provides insight into potential pathophysiologic mechanisms. Cortical thinning, particularly in the cingulate and insular cortices, may be linked to the observed downregulation of synaptic regulatory proteins, reflecting impaired synaptic maintenance and neuronal connectivity."
December 2, 2025 at 2:09 AM
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tomkindlon.bsky.social
Stanford author team including Ron Davis

Glymphatic System Dysregulation as a Key Contributor to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

www.mdpi.com/1422-0067/26...

Screenshot from latest Science for ME weekly update

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Glymphatic System Dysregulation as a Key Contributor to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — Nemat-Gorgani et al. Hypothesis paper. "With the recent discovery of the glymphatic system providing a mechanism for the removal of metabolic waste products from the brain, primarily during sleep, we were interested in exploring the relationship between GD and symptoms of ME/CFS."
December 1, 2025 at 1:45 AM
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tomkindlon.bsky.social
Opinion piece on the word "journey" as a problematic euphemism for #chronicillness.
"Sugarcoating my bitter pill, a chronic disease, by calling it a “journey” might sweeten it for you, but not for me"

www.statnews.com/2025/11/25/c...

Screenshot from latest Science for ME weekly update

#LongCovid
STATNews I have long Covid. Don't call my chronic disease a 'journey' Opinion piece by professor emeritus Peter Swensson on the word "journey" as a problematic euphemism for chronic illness. "Sugarcoating my bitter pill, a chronic disease, by calling it a “journey” might sweeten it for you, but not for me."
December 1, 2025 at 1:31 AM
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chromatowski.bsky.social
♥️
kmeekes.bsky.social Kristin Meekes @kmeekes.bsky.social · 5d
I’m a better nurse for being on social media and a huge part of that is because of people with Long Covid, ME/CFS, PEM, and other chronic illnesses sharing their stories online
November 29, 2025 at 7:53 PM
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chromatowski.bsky.social
Yep.

Link to ME-ICC: onlinelibrary.wiley.com/doi/10.1111/...
Tweet from Todd Davenport @sunsopeningband Today's unpopular opinion is maybe the worst development in Long Covid research has been confusing PESE with PEM. Just because a person may have unusual and disabling symptoms and signs after an exertion (PESE) doesn't necessarily make it PEM. Please see the ICC-ME for details. 11:54 AM • Aug 18, 2025 • 32.9K Views
November 29, 2025 at 9:12 PM
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galder.bsky.social
Time to see some OC's! Show me your characters please, and tell me a bit about them. Tag someone who has OC's to share too!

I haven't done this in ages.

Here are some of mine.

#Warcraft #WarcraftArt #art #oc
November 28, 2025 at 9:00 PM
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tomkindlon.bsky.social
#chronicillness #chroniclife #Spoonies #Spoonie
#ChronicallyIll #Disabled #Disability #ChronicPain
 Cat Lady's Quilt. catladysquilts +Chroniclllness 06/28/25 This is your friendly reminder that lying in bed all day is only enjoyable when it's RARE and VOLUNTARY. Bed rest is no fun whatsoever when it's half (or more) of my waking hours and there are a million and one other far more interesting (or pressing) things I would MUCH rather be doing. So please don't mistake my disability for luxury. If I don't rest this much, I will become too ill to function at all.
November 29, 2025 at 1:59 AM
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nasibov.me
November 25, 2025 at 8:30 PM
rikkapik.bsky.social
Translation (post by the ÖG ME/CFS, Austrian society for ME/CFS on the call for participation on the PEM study at the University of Vienna): V- PEM- AQ Appeal: This is not how participation works. What you should know about the new questionaire!
The ÖG ME/CFS has given specialist coucil but was not
November 25, 2025 at 3:30 PM
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mecfs.at
📌Appell:So gelingt Partizipation nicht. Was ihr über den V-PEM-AQ wissen solltet!

🔹Die ÖG ME/CFS hat den Fragebogen fachlich beraten, war aber nicht in den weiteren Prozess & in die Veröffentlichung eingebunden. Wir haben im Entwicklungsprozess umfangreiche inhaltliche Unterstützung geleistet
1/
Grafik mit orangener Überschrift „Appell: So gelingt Partizipation nicht.“ und Text „V-PEM-AQ – Was ihr über den neuen Fragebogen wissen solltet!“, im Hintergrund Hand auf Bewertungs-Smileys, unten ÖG-ME/CFS-Logo.
November 22, 2025 at 1:08 PM
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tomkindlon.bsky.social
Survey opportunity:
Validation of the Vienna Post-Exertional Malaise Assessment Questionnaire (V-PEM-AQ)

English:
www.soscisurvey.de/V-PEM-AQ_eng...

German:
www.soscisurvey.de/V-PEM-Q/

Questionnaire is estimated to take 20 minutes

Screenshot from latest Science for ME update

#MEcfs #LongCovid
Validation of the Vienna Post-Exertional Malaise Assessment Questionnaire (V-PEM-AQ) Dr. Ali Kapan and colleagues from the University of Vienna are working on a new questionnaire on post-exertional malaise (PEM). In this second phase of the project, they aim to evaluate how reliably and validly the questionnaire captures PEM and how it compares to existing assessment instruments. They are looking for participants to validate the questionnaire in English and German.
November 25, 2025 at 1:27 AM
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johannesfranzen.bsky.social
Die @bpb.de hat sich von X verabschiedet und wird deswegen massiv von rechts kritisiert. Ich denke, da sollte man mal reinfolgen.
November 25, 2025 at 10:38 AM
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nasibov.me
November 24, 2025 at 12:01 PM
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tomkindlon.bsky.social
Mucosal Viruses in ME/CFS: A Missing Piece of the Puzzle?

www.mdpi.com/1422-0067/26...

"Emerging evidence from saliva, mucosal tissues, & longitudinal studies suggests latent viruses can persist and periodically reactivate at mucosal sites, potentially driving immune dysregulation"

#MEcfs #PwME
www.mdpi.com
November 24, 2025 at 2:40 AM
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tomkindlon.bsky.social
From Austria:

The Clinical Relevance of Mast Cell Activation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

www.mdpi.com/2075-4418/15...

Screenshot from latest Science for ME weekly update

#MCAS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
The Clinical Relevance of Mast Cell Activation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — Rohrhofer et al. "our findings suggest that the prevalence of MCA increases with ME/CFS disease progression." "Limitations of our study include its reliance on self-reported data in the CCCFS patient cohort, the retrospective design of the ME/CFS-MCA patient cohort, and potential differences in MCAS diagnostic procedure."
November 20, 2025 at 1:51 AM
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galder.bsky.social
And another reward piece is here, this time a kit for an Assassin!

Reward for @tinsilvrthrn.bsky.social ! Thank you for your support.

Check out my DA subscriptions if you'd like to support me and get art like this on regular basis!

Enjoy!

#fantasy #weapon #itemdesign #reward #digitalart #art
November 19, 2025 at 2:43 PM
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tomkindlon.bsky.social
New:
Introducing “Energy Limiting Conditions”: The Emergence and Evolution of a New Impairment Concept

Free
www.scienceopen.com/hosted-docum...

Sympathetic exploration of topic

#EnergyLimitingConditions #Spoonie #Fatigue #chronicillness #Spoonies #ELCI #MEcfs #LongCovid
Abstract The terms “energy limiting condition” (ELC) and “energy impairment”locate the embodied experience of chronic illness into a category of impairment for the purposes of social policy and administration of disability. This article discusses the origins of these concepts in the UK-based Chronic Illness Inclusion Project (CIIP). Selected findings from the CIIP’s mixed-methods participatory research demonstrate how energy impairment, and related terms, arose as a practice of resistance against the invalidation of “fatigue” as impairment, giving rise to a transdiagnostic disability identity, and a strategy for self-advocacy. Theoretical tensions between the rejection of impairment within disability studies and the emancipatory aims of the CIIP are discussed, as well as the political history of fatigue within the disability category. Impairment labels, as a necessary evil, should reflect disabled people’s experience and identity, and further research should uncover their conditions of production.
November 15, 2025 at 10:09 PM
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tomkindlon.bsky.social
I was just clearing out some files and came across this set of treatment survey results from the CFIDS Association of America in 1999 which I thought might be of interest to the odd person.

Pacing came out on top

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Bar chart of results, too many to list
November 15, 2025 at 6:37 PM
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volksverpetzer.de
Wenn eine Regierung mit den Grünen exakt die Politik machen würde, die die derzeitige Regierung macht, wären alle überzeugt, dass das die schlechteste Regierung aller Zeiten sei, weil das täglich in der BILD stünde.
November 14, 2025 at 5:47 PM
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tomkindlon.bsky.social
"The ME/CFS brain is inflamed" from Jarred Younger, PhD

(www.youtube.com/watch?v=wuzm...

Screenshot from November AMMES newsletter

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Photo of Jarred Younger 067 - New results: The ME/CFS brain is inflamed Here are new positron emission tomography (PET) results showing abnormal microglia activation in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The study was funded by the National Institutes of Health (NIH).
November 15, 2025 at 1:33 AM
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tomkindlon.bsky.social
Redox Status in Patients Suffering from Multiple Chemical Sensitivity (MCS): A Pilot Study

www.mdpi.com/2077-0383/14...

Image is screenshot from MCS-Aware November 2025 Newsletter

#MCS #MultipleChemicalSensitivity
Oxidative Stress Status in Patients with MCS (A Pilot Study) J.Clin.Med.2025,14(17),6185; Published: 2 September 2025 This study, published in The Journal of Clinical Medicine, explored oxidative stress in MCS patients compared to healthy individuals, focusing on blood plasma and red blood cell markers. Results suggest oxidative stress plays a key role in MCS, especially through disruption of the red blood cells’ glutathione cycle. The research emphasises the importance of investigating the molecular mechanisms behind MCS, aiming to refine diagnosis and treatment. Insights into cellular oxidative imbalances could help explain the widespread dysfunction seen in those with MCS. https://doi.org/10.3390/jcm14176185
November 9, 2025 at 2:03 AM
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tomkindlon.bsky.social
New US research:

Post-Exertional Symptom Exacerbation after Sub-Maximal Exercise in Individuals with #MyalgicEncephalomyelitis / Chronic Fatigue Syndrome & Post-Acute Sequelae of COVID-19

journals.lww.com/acsm-msse/ab...

#ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid #PostExertionalMalaise
Purpose: In individuals with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and post-acute sequelae of SARS-CoV-2 infection (PASC), physical activity can exacerbate symptoms for days-to-weeks, referred to as post-exertional symptom exacerbation (PESE). This study characterized the trajectory of PESE symptoms before and for 7 days after a sub-maximal exercise task in individuals with ME/CFS or PASC. Methods: Individuals with ME/CFS (n=30) or PASC (n=30) and matched controls (n=30) were recruited from a university hospital and the community setting. Participants completed a 25-minute moderate intensity exercise on a whole-body cycle ergometer. The trajectory of 8 commonly reported PESE symptoms (physical fatigue, mental fatigue, pain, physical function, flu-like symptoms, gastrointestinal symptoms, sleep dysfunction, anxiety) before and for 7 days after exercise. Results: There was variability in the proportion of those who experienced increased symptoms ranging from 46/60 reporting physical fatigue to only 18/30 reporting anxiety. There was no change in any of the symptoms across the 7-day period when analyzed individually. An aggregate score of 4-5 symptoms that includes physical fatigue, mental fatigue, physical function and flu-like symptoms, with or without pain, was more comprehensive in capturing maximal changes in PESE. Changes were greatest during the 72h post-exercise and for those with ME/CFS. The aggregate score shows 8/30 of individuals with ME/CFS and 12/30 with PASC show minimal-to-no increase in PESE, while 6-7/30 show increases greater than 3/10 points. Conclusions: PESE to a clinically relevant exercise task is variable in individuals with ME/CFS and PASC as submaximal exercise does not exacerbate symptoms for some, while modifications of intensity may be necessary to minimize PESE in others.
November 4, 2025 at 2:08 PM
rikkapik.bsky.social
Another night of me waking up to panic attacks. This will be a huge drain on my energy. Well, c-PTSD was no fun before the pandemic. I do think I got my ME from the covid variant with the wild dreams. Every infection (with anything) brings them back up, too. Panic attacks are not helpful with
October 29, 2025 at 7:54 AM