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penelopidia.bsky.social
@penelopidia.bsky.social
84 followers 140 following 75 posts

MA SocSci & MPH. Stroke survivor turned RN. Severe #LongCovid & #ME/CFS after early 2022 Covid. Passionate about science, health, tech, and art. Here for awareness, connection, and meaningful conversations—when brain fog and energy allow me to keep up!
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Reposted
tomkindlon.bsky.social
“Screaming Immune Activation”: Major Lipkin Study Finds ME/CFS Systems Folding Under the Stress

www.healthrising.org/blog/2025/09...

Screenshot from AMMES December 2025 newsletter

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Image of a rope being held together with by a tiny thread “Screaming Immune Activation”: Major Lipkin Study Finds ME/CFS Systems Folding Under the Stress A couple of major themes are present. Immune activation on a massive scale. Failures on multiple levels to provide the muscles with the necessary energy to exercise. Metabolic inflexibility that prevents the body from getting into “exercise mode”. A toxin and free radical-laden system that’s co-opting resources needed to deal with exertion. An extracellular matrix is under attack, but is unable to defend itself, and a variety of systems are so stressed that they fold when stressors show up. The really remarkable thing is that a coherent argument can be made that, like dominoes falling, virtually every one of the abnormalities cited above can be linked together. They may be the logical conclusion of an energy-depleted, toxin-overrun system. Read more here>>
December 21, 2025 at 1:46 AM
Reposted
chromatowski.bsky.social
Wow this is a great essay.

#NEISvoid
bhanlon15.bsky.social Billy Hanlon @bhanlon15.bsky.social · Nov 28
The Sick Times: 'You know someone with Long COVID. They need you to ask about it genuinely.'

Written by Philip Hoover

'If community-building is a bulwark against autocracy, then asking after one another might be a good place to start.'

thesicktimes.org/2025/11/28/y...
You know someone with Long COVID. They need you to ask about it genuinely. - The Sick Times
If community-building is a bulwark against autocracy, then asking after one another might be a good place to start.
thesicktimes.org
November 28, 2025 at 7:56 PM
Reposted
tomkindlon.bsky.social
The Sick Times @thesicktimes.org : Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise

thesicktimes.org/2025/11/21/l...

Experts say testing exercise is “money down the drain” and won’t advance understanding of Long COVID.

#LongCovid #PEM
Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise - The Sick Times
An analysis by The Sick Times find that less than 15% of Long COVID clinical trials testing the benefits of exercise or cardiopulmonary rehabilitation measured post-exertional malaise, according to th...
thesicktimes.org
November 24, 2025 at 12:03 AM
Reposted
minetodo.bsky.social
Stand By ME/CFS!
We are banding together globally to raise awareness, demand health equity and seek a path towards the cure for ME/CFS. Please lend your voice and become an ally today!

#StandByMEcfs #StillSickStillFighting #MEcfs #pwME
#TeachMETreatME #EndMEcfs #GlobalVoiceforME
#wishtreeforyokoono
Wish tag from virtual Wish Tree for Yoko Ono. Cynthia's wish is: Stand By ME/CFS!
October 13, 2025 at 10:51 PM
Reposted
tomkindlon.bsky.social
Shared with permission

#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Drawing of very wilted plants camilla @predi_cam_ents The plants from @thechronicchloe ’s room have all been moved🪴. She barely tolerates any light lately and they were slowly wilting. Every time I see them I’m reminded of yet another thing she’s lost to ME/CFS 😔
November 1, 2025 at 6:32 PM
Reposted
kissaosaaja.bsky.social
Tää suomen säästöpuhe velan taittamisesta vertautuu mun mielestä hevosen hoitoon.

Leikataan hevoselta ruoasta 20% ja ihmetellään, miksi se ei jaksa juosta kovempaa. Leikataan ruoasta 50% ja ihmetellään samaa. Lopuksi hevoselta leikataan kengät ja mietitään, miksi se ei taaskaan juokse kovempaa.->
October 8, 2025 at 8:14 PM
penelopidia.bsky.social
Hope they get the required amount!!
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · Sep 22
Google translation of article on an interesting ME/CFS drug trial that is about to start in Norway

www-nettavisen-no.translate.goog/nyheter/vild...

Sadly they still haven't reached the amount required to fully do this study.
People can donate here
www.me-foreningen.no/om-oss/stott...

#MEcfs #PwME
Vilde became disabled at the age of 25. Vilde Lepsøy became disabled at the age of 25. Then many of her dreams withered. Photo: RUNE JOHANSEN Now Vilde (33) is participating in a new ME study at Hauke
September 22, 2025 at 8:08 PM
Reposted
gayfabfourfan.bsky.social
One of the big COVID facts that tend to make people go deer in headlights is the high percentage of asymptomatic infections. Unfortunately these infections can still cause you or others problems months or years later. This was known back in 2020 but shushed up afterwards.
September 10, 2025 at 3:36 AM
Reposted
tomkindlon.bsky.social
"Long COVID-19: a Four-Year prospective cohort study of risk factors, recovery, and quality of life"

bmcinfectdis.biomedcentral.com/articles/10....

"Nearly 29% of post-acute COVID-19 patients developed long COVID-19"

#LongCovid #PASC #Novid
Long COVID-19: a Four-Year prospective cohort study of risk factors, recovery, and quality of life — Kamal et al. "This four-year prospective cohort study was conducted in Saudi Arabia, enrolling adults with confirmed acute COVID-19 from multiple affiliated healthcare centers between March 2020 and March 2024." "Nearly 29% of post-acute COVID-19 patients developed long COVID-19"
September 3, 2025 at 2:18 AM
Reposted
decodemestudy.bsky.social
See you soon for our genetic results webinar! Spots are limited to 3000, and registering does not guarantee a spot. Don't worry - we will also be sharing it live to our Facebook page at the time facebook.com/decodeMEstudy
as well as recording it so that you can watch it back.
August 14, 2025 at 12:52 PM
Reposted
koronakanava.mas.to.ap.brid.gy
On tärkeää, että pitkää koronaa käsitellään edelleen mediassa – aihe on yhteiskunnallisesti merkittävä ja koskettaa monia. Käsittelyn tulee kuitenkin olla monipuolista, tasapainoista ja rohkeaa. Tällä hetkellä kukaan ei tunnu uskaltavan kyseenalaistaa HUS:n Pitkittyneiden oireiden klinikan […]
Original post on mas.to
mas.to
July 14, 2025 at 7:04 AM
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chronicillness.bsky.social
I feel like I'm trapped in a symptoms cyclone
July 2, 2025 at 12:04 PM
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kkarapanagiotidis.bsky.social
#freedomflotilla #madleen #gaza #palestine #greta
June 9, 2025 at 3:03 AM
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debbierua.bsky.social
#madleen #flotilla #gaza #greta
June 9, 2025 at 12:47 AM
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abrokenbattery.bsky.social
Clips from The Golden Girls (1989): Dorothy sees a neurologist after months of #MECFS symptoms. He tells her there’s nothing wrong, it’s just ageing — and suggests a psychiatrist. She begins to doubt herself—until Rose comforts her saying “Doctors don’t know everything.”
June 3, 2025 at 7:44 AM
penelopidia.bsky.social
Mikä pettymys, (vaikkei yllätäkään), hallitukselta jää uupumaan teot palestiinalaisten kansanmurhan pysäyttämiseksi.
lauspalo.com Jarkko Lauspalo @lauspalo.com · May 22
Hallituksen yhteinen linja Palestiinan tunnustamisesta:
* KD vastustaa
* PS ei näe ajankohtaisena
* RKP haluaa keskustelua
* Kokoomuksen tavoite kahden valtion malli

Linja on yhtä selkeä kuin hallitusohjelma on hyvä.
Oppositio puhuu Gazan kansan­murhasta, Orpo vakuuttaa hallituksen yhtenäisyyttä – mutta Essayah vetää mattoa alta
Torstain tapahtumat jättivät epäselväksi, mikä on koko hallituksen linja suhteessa Gazan sotaan.
yle.fi
May 22, 2025 at 8:50 PM
penelopidia.bsky.social
Kas, kerrankin muutakin kuin liiran laarumia!
koronakanava.mas.to.ap.brid.gy Koronakanava @koronakanava.mas.to.ap.brid.gy · May 22
Helsingin yliopiston johtama kansainvälinen geenitutkimus on löytänyt perinnöllisen riskitekijän, joka lisää long covidiin sairastumisen riskiä, yliopisto tiedottaa. Long covidilla tarkoitetaan koronavirusinfektion jälkeisiä pitkäkestoisia oireita.

https://yle.fi/a/74-20163406

#koronafi
Perinnöllinen riskitekijä lisää long covidin riskiä
Uutiset nopeasti ja luotettavasti.
yle.fi
May 22, 2025 at 11:13 AM
Reposted
jukkatapani.bsky.social
Israel suorittaa kansanmurhaa: EBU päästää palkintopallille.

Espanja puolustaa ihmisoikeuksia: EBU uhkaa sakoilla!

– Kun ihmisoikeudet ovat vaakalaudalla, hiljaisuus ei ole vaihtoehto. Rauhaa ja oikeutta Palestiinalle!
Espanjalaiskanava keskeytti Euroviisujen finaalilähetyksen ja esitti Palestiinaa tukevan lausunnon
”Kun ihmisoikeudet ovat vaakalaudalla, hiljaisuus ei ole vaihtoehto”, RTVE:n viestissä kirjoitettiin. RTVE:n mukaan se sai Ebulta varoituskirjeen kannanottoaan edeltäen.
yle.fi
May 18, 2025 at 5:06 AM
penelopidia.bsky.social
Germaine's poem from 25 years ago is deeply moving and a powerful reminder of why awareness and support are still so needed. Thank you for sharing💙
#mecfs #MEawarenessday.”
germainehypher.bsky.social Germaine Hypher - Crafting A Path Through Illness @germainehypher.bsky.social · May 12
I wrote this poem 25 years ago. Thankfully, due to greater awareness, I no longer identify so acutely with it, but I know many will so am sharing it this ME Awareness Day in solidarity and for increased social/medical support.
#chronicillnes #invisibleillness #ME/CFS #disabilitysos #millionsmissing
A purply-pink, moody sky with clouds has a white box over it containing a poem in black text. Beneath this black text says ©️ Germaine Hypher @craftingapaththroughillness The poem is as follows: Abducted (by M.E.) Dragged from her route, pushed to the floor hidden from sight, stripped to the core hauled and mauled behind respectable walls the present is no gift, the future falls away. Skin bruised body battered, twisted tattered; aching jaw gagged and bound lest pain should issue sound and give itself away. Tied inside, blocked goals, no air no way out except peepholes flimsy limbs snared with lead all that moves is in her head as frantic plans ricochet round Body plunged, left to drown oxygen deficient muscles burn, head pounds, brain drains, deflating deflating And the voices, they taunt, they echo and haunt, Accusing her of flirting with fate.
May 12, 2025 at 11:14 AM
Reposted
tryangregory.bsky.social
Reminder that half the population of Gaza are children.

www.theguardian.com/commentisfre...
Israel is starving Gaza. It’s a cheap, silent and brutal way to kill | Ahmed Moor
Starvation is a slow, painful way to die. And unlike bombs and tanks, it’s easy for western leaders to ignore
www.theguardian.com
May 8, 2025 at 12:28 PM
Reposted
arielglenn.bsky.social
In what world is this acceptable? In what world can any country continue to provide weapons to a nation who declares it will seize all of the land of another people and remain there as long as it wishes, perhaps forever? In what world do other governments remain silent about this?
Sadly, in ours.
May 5, 2025 at 9:20 AM
Reposted
tomkindlon.bsky.social
Thousands demand withdrawal of review article recommending exercise therapy for chronic fatigue syndrome

Links in image:
www.cochranelibrary.com/cdsr/doi/10....

retractionwatch.com/2025/01/23/t...

Screenshot from the AMMES May email newsletter

#MEcfs #CFS
Image of a woman running Thousands demand withdrawal of review article recommending exercise therapy for chronic fatigue syndrome The decision to abandon a process to re-evaluate a review recommending exercise therapy for chronic fatigue syndrome (ME/CFS) has reignited calls for the article to be withdrawn. The 2019 version of the Cochrane Library review, “Exercise therapy for chronic fatigue syndrome,” has accumulated 67 citations, according to Clarivate’s Web of Science.
May 4, 2025 at 12:50 AM
Reposted
tomkindlon.bsky.social
“Shared Metabolic Changes Among People with ME/CFS, Fibromyalgia, or Gulf War Syndrome Suggest Common Biomarkers and Treatments”

Summary article from the Solve ME/CFS Initiative @solveme.bsky.social

solvecfs.org/shared-metab...

#MEcfs #CFS #Fibromyalgia
April 30, 2025 at 1:25 AM
Reposted
tomkindlon.bsky.social
ME Association:

Leading UK Charity invests in Canadian trial of drug treatment for #MECFS & #LongCovid

We've provided funding to Dr Luis Nacul (principal investigator) for an important clinical trial in Canada to test the potential benefits of low-dose naltrexone #LDN

meassociation.org.uk/h5h2
Press Release: Leading UK Charity invests in Canadian trial of drug treatment for ME/CFS and Long Covid - The ME Association
The ME Association, a leading UK charity for people with […]
meassociation.org.uk
April 5, 2025 at 11:25 PM
penelopidia.bsky.social
So much to say, but don't even know where to being. As my #lc#me turned 3yrs it became 15yrs since my #stroke. Went through new set of neuropsychological tests and was faced with the aftermath post stroke.. things I had blissfully (purposefully) forgotten after so much #medicalgaslighting
March 20, 2025 at 2:29 PM