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#MEcfs
Latest posts tagged with #MEcfs on Bluesky
Posts tagged #MEcfs
I slept OK (for me), did nothing today, feel like I paced well and still look like someone clocked me right in both eyes.
#tiredeyes #mecfs #longcovid
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Human Endogenous Retroviruses and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Emerging Insights into Their Role in Disease Pathogenesis, Immune Dysregulation, and as Potential Biomarkers and Therapeutic Targets — Krishani Dinali Perera et al "Collectively, this hypothetical model positions HERVs as stress-responsive, epigenetically activated elements that transform transient viral or inflammatory insults into self-sustaining immune exhaustion and senescence, neuroinflammation, and impaired recovery in individuals with ME/CFS."
Human Endogenous Retroviruses and ME/CFS: Emerging Insights into Their Role in Disease Pathogenesis, Immune Dysregulation, and as Potential Biomarkers and Therapeutic Targets
www.preprints.org/manuscript/2...
Screenshot from latest Science for ME weekly update
#MEcfs #PwME
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Pathophysiological, Translational, and Diagnostic Aspects of ME/CFS: A Focus on Skeletal Muscle Involvement — Giorgio Fanò-Illic et al "Over the years, our group contributed to demonstrating that muscle alterations in ME/CFS are not secondary to deconditioning but represent primary biochemical and structural abnormalities." "In particular, we identified evidence of oxidative stress, mitochondrial dysfunction, and altered calcium homeostasis in skeletal muscle biopsies from affected patients."
Review by Italian team
Pathophysiological, Translational, and Diagnostic Aspects of ME/CFS: A Focus on Skeletal Muscle Involvement
www.mdpi.com/2075-4418/16...
Screenshot from latest Science for ME weekly update
#MEcfs #PwME
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April needs:
£1,002 rent
£50 mould fogger
£1,871 vascular treatment
£200 food/meds/IV
£500 surgery loans
Please share, reply to boost, and donate if you can ❤️ Every bit helps keep her safe.
#SaveLizNevra #MECFS #MoldIllness #ChronicIllness #CommunityCare
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#NEISVoid #ChronicIllness #Spoonie ?
I have had #MECFS symptoms for as far back as I can remember - literally having had exercise intolerance from at least kindergarten on.
I did not have developmental delays or muscle weakness
I have eds - originally type 2, no gene, never retyped.
NE1 else?
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Emerge Australia graphic showing a close-up of hands planting a small green seedling in soil. Text on a blue banner reads “WHAT WILL YOUR LEGACY BE?” with the Emerge Australia logo in the top left and a green sunburst shape in the bottom right.
Plant the seed for lasting impact 🌱
A bequest to Emerge Australia helps grow vital support, education and research for people with #MECFS and #LongCOVID. It’s a simple, meaningful way to make a difference.
Learn more: zurl.co/di330
#Legacy
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今日は路面の矢印をお届けします😃
筋痛性脳脊髄炎が広く周知され、治療法が見つかりますように。
#ブルーフォトチャレンジ
#筋痛性脳脊髄炎
#笑顔の花びら集めたい
#5月12日
#mecfs
#bluephotochallenge
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Genetic Insights into Circulating Complement Proteins in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Potential Inflammatory Subgroup #MECFS #LongCovid
www.researchgate.net/publication/...
www.mdpi.com/1422-0067/27...
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We're watching season 1 of #TheComeback in the #ChronicLoaf stream
mzelo.com/app/rooms/ch...
#NEISvoid #comedy #mecfs #DisCo #ForTinu #MutualAidMarathon #spoonie #mocumentary
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Ist das Theme #Mecfs und falsche Begutachtungen für die #SPÖ nun wirklich wieder erledigt?
Oder kommt da noch was zu der tollen Plakatserie, mit wir stehen an der Seite von Mecfs Betroffenen?
Ich weiß, ich bin lästig, aber es geht für VIELE um Leben und Tod.
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We will record a brief introduction with some helpful tips for those unable to attend but most of the video will not be recorded in order to let people receive help with their stories with privacy.
#FrailAndFurious #pwME #Medicaid #MECFS
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📢 Speaker & Chair Announcement: Dr. Wakiro Sato (NCNP, Tokio) ist Chair der International ME/CFS Conference 2026. Seine Forschung zu #MECFS fokussiert Gehirnanomalien, Autoimmunität und Immunpathogenese. 🧠🔬
🔗 Jetzt anmelden: https://t.ly/bNxJx
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Recently, I've been repeatedly tagged by people who mistakenly believe my account belongs to astronaut Christina Koch.
I'm not her.
I can barely make it to the next train station, let alone into space. I'm severely ill with #MEcfs #POTS #CCI #MCAS and housebound most days.
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DHCR7 Mutation Carriers and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: No Associations According to DecodeME Data — Antoniy Elias Sverdrup et al "To our knowledge, this study is the first to attempt to establish a link between cholesterol metabolism defects (at the level of heterozygous SLOS carriers) and this syndrome. The negative results obtained are consistent with clinical observations: heterozygotes for DHCR7 mutations are phenotypically healthy and do not differ from the general population in key health indicators (with the possible exception of minor biochemical abnormalities)."
DHCR7 Mutation Carriers and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: No Associations According to DecodeME Data
www.jppn.ru/jour/article...
Screenshot from latest Science for ME weekly update
#MEcfs #PwME
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![Proteomic signatures in cerebrospinal fluid and their clinical associations in patients with ME/CFS — Bragée et al
"pathway analysis […] identified an enrichment of neutrophil degranulation and platelet-related signatures in POTS, and complement cascade and coagulation-related pathways corresponding with severity of ME/CFS"](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:43rudsv62fuwsmnk7oppgtdy/bafkreif7ciz6qq4aqhhkjpm7or4sfhvyxekhxrscxsv4gd346uhzv2hrue)
Proteomic signatures in cerebrospinal fluid and their clinical associations in patients with ME/CFS — Bragée et al "pathway analysis […] identified an enrichment of neutrophil degranulation and platelet-related signatures in POTS, and complement cascade and coagulation-related pathways corresponding with severity of ME/CFS"
Proteomic signatures in cerebrospinal fluid and their clinical associations in patients with ME/CFS
www.nature.com/articles/s41...
Screenshot from latest Science for ME weekly update
#MEcfs #PwME
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Had a really bad flare up yesterday that is overflowing into today. After several really good weeks.
I don't know what triggered it.
I can't believe I used to feel like this, or worse, every day.
#recovery2026 #MECFS #DarkSojourn
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TW: medical gaslighting, bloody images
As someone who has experienced gaslighting from medical professionals (among others), I found this video cathartic. And the creativity and talent of the artist, Ren, is off the charts.
#MECFS #disability #LongCovid #Chronic #pots #Lyme #mentalhealth
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Sometimes you have to forget what's gone, appreciate what still remains and look forward to what's coming next. #recovered #anxiety #nevergiveup #AlwaysKeepFighting #irondeficiency #eatingdisorder #fibromyalgia #MECFS #Erythromelalgia
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Komplett falsche Zahlen:
"0,6 bis 1 % der Bevölkerung [...], also bis zu 15 Millionen Menschen" sind alleine schon die Zahlen der #PostCovid- und #MECFS -Erkrankten in Deutschland.
Warum wird nie richtig recherchiert, sondern die Summary ungeprüft abgeschrieben?
www.sueddeutsche.de/wirtschaft/l...
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Nicht verfügbar.
Ich würde gerne wie wissen, wie ich als Bettlägerige Person meiner Pflicht, den Führerschein einzutauschen nachkommen kann.
Falls die Regierung ihre Blockade gegen Arzneimittelforschung für #MEcfs aufgibt könnte ich ja vielleicht in ein paar Jahren wieder Auto fahren.
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Join the Mayor of Trafford for a wonderful evening of music, mystery and a Snakes & Ladders quiz!
Sunday 12th April, 7–9pm Dunham Road Unitarian Chapel, Altrincham WA14 4NS.
Tickets just £5 per person.
https://www.quiz.brophys.com
#MECFS #pwME #Fundraising #MyalgicE #Carers
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Here's some context for what I mean by art from me in 2021 being rare. My #MECFS used to be progressive and gradually almost completely took art from me. In 2021 I actually started improving on Abilify, but in 2023 is when I started being able to regularly draw again with iron infusions.
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Menschen mit ME/CFS:
Frage für eine Freundin:
Könnt ihr verträgliche Schlafmittel empfehlen u/o welche Erfahrungen habt ihr mit
a) Zolpidem
b) Agomelatin
c) Melatonin (welche Produkte?)
d) Betadorm
gemacht?
Gern teilen.
Danke.
#mecfs
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Newsletters´re worked up, updates posted.
I´ll go offline now until tomorrow morning due to #MECFS, since I can´t receive any TV program anymore I´ll listen to some more Radio Seefunk.
#ByeBye to all online f(ur)riends.
💖💖💖
en.wikipedia.org/wiki/Myalgic...
radio-seefunk.imsueden.de
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![Abstract
CC-BY-NC 4.0 International license
.
Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic multisystem
disease characterized by profound fatigue, post-exertional malaise, cognitive impairment, and
autonomic dysfunction. Its pathophysiology is incompletely understood and likely involves complex
interactions between immune, autonomic, and metabolic dysregulation. Despite features with potential
relevance for anesthesia and perioperative care, evidence to guide anesthetic management in
individuals with ME/CFS remains limited. We therefore performed a retrospective matched-pair
analysis to generate clinical data on perioperative responses and identify areas for future research.
Methods: We conducted a retrospective matched-pair analysis at a single tertiary center. All patients
with ME/CFS undergoing general anesthesia from 2015 to 2026 were identified using ICD-10-GM
codes (G93.3 and U09.9) with additional manual verification and matched 1:1 to controls for
comparison. Patients with confounding diagnoses or American Society of Anesthesiologists physical
status above III were excluded. The analysis focused on intraoperative hemodynamic parameters,
including baseline, post-induction, median, and lowest recorded systolic blood pressure and heart rate,
as well as early postoperative outcomes in the post-anesthesia care unit (PACU), including maximum
pain scores and requirement for rescue analgesia.
Results: Out of 189 individuals identified through ICD-10 codes, 15 matched pairs were included after
application of exclusion criteria. ME/CFS patients exhibited lower lowest recorded intraoperative
systolic blood pressure (90.0 [82.5-95.0] mmHg in ME/CFS vs 100.0 [90.0-110.0] mmHg in controls, p
= 0.044) as well as lower lowest heart rate (50 [40.0-57.5] bpm in ME/CFS vs 60 [50.0-65.0] bpm in
controls, p = 0.012). Vasopressor use and fluid administration did not differ, and no episodes of severe
hypotension or peri…](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:43rudsv62fuwsmnk7oppgtdy/bafkreiarcjjd562zvxehhgqhrgri66nsmnrl5sfqb6ab4inumipmqjmtky)
Abstract CC-BY-NC 4.0 International license . Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic multisystem disease characterized by profound fatigue, post-exertional malaise, cognitive impairment, and autonomic dysfunction. Its pathophysiology is incompletely understood and likely involves complex interactions between immune, autonomic, and metabolic dysregulation. Despite features with potential relevance for anesthesia and perioperative care, evidence to guide anesthetic management in individuals with ME/CFS remains limited. We therefore performed a retrospective matched-pair analysis to generate clinical data on perioperative responses and identify areas for future research. Methods: We conducted a retrospective matched-pair analysis at a single tertiary center. All patients with ME/CFS undergoing general anesthesia from 2015 to 2026 were identified using ICD-10-GM codes (G93.3 and U09.9) with additional manual verification and matched 1:1 to controls for comparison. Patients with confounding diagnoses or American Society of Anesthesiologists physical status above III were excluded. The analysis focused on intraoperative hemodynamic parameters, including baseline, post-induction, median, and lowest recorded systolic blood pressure and heart rate, as well as early postoperative outcomes in the post-anesthesia care unit (PACU), including maximum pain scores and requirement for rescue analgesia. Results: Out of 189 individuals identified through ICD-10 codes, 15 matched pairs were included after application of exclusion criteria. ME/CFS patients exhibited lower lowest recorded intraoperative systolic blood pressure (90.0 [82.5-95.0] mmHg in ME/CFS vs 100.0 [90.0-110.0] mmHg in controls, p = 0.044) as well as lower lowest heart rate (50 [40.0-57.5] bpm in ME/CFS vs 60 [50.0-65.0] bpm in controls, p = 0.012). Vasopressor use and fluid administration did not differ, and no episodes of severe hypotension or peri…
Good to see some empirical research in this area
Perioperative outcomes in patients with myalgic encephalomyelitis/chronic fatigue
syndrome undergoing general anesthesia: a retrospective matched-pair study
www.medrxiv.org/content/10.6...
#MEcfs #PwME
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The MEA also funds a number of Healthcare Research and PhD studies, more details here:
meassociation.org.uk/research/ramsay-research...
#MECFS #LongCovid #Research #MEAssociation
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NDR:
In Deutschland sind etwa 650.000 Menschen von ME/CFS betroffen - einer komplexen neuroimmunologischen Erkrankung.
Zahlreiche Betroffene fühlen sich weiterhin unsichtbar und kämpfen um Aufklärung.
Weitere Geschichten #MEcfs #PostCOVID #PAIS Betroffener:
ndr.de/dasrotesofa-1726.html
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Arghs... Wie ich diesen Einfluss von #BigTech insbesondere #Whatsapp hasse. Will eigentlich schon lange weg, allein die kognitiven Kapazitäten zur Auseinandersetzung verlangsamten das ( fck #MECFS)
Kündige nun baldigen Ausstieg an, frage Kontakte nach #Threema oder zumindest #Signal... Ja nee, da 1/
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