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Fliss Alc

@flissaki.bsky.social
418 followers 994 following 200 posts

Microbiologist, amateur long covid specialist, mask-wearer, europhile, thalassophile, biophile, grecophile 🇬🇷. One of #MillionsMissing - LC, ME/CFS, POTS, MCAS

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Reposted by Fliss Alc
#MEAction Network @meactnet.bsky.social · 14/10/2026
Have you signed up for our Halloween art workshop yet? It will be October 29th at noon ET- all online & free to join! ow.ly/yJBN50ZXIpn Orion Romero, a #pwME, educator, artist, & MEAction volunteer, will be hosting! Thank you, Orion! Join in & have fun! Register now!
Poster for Orion's Halloween Art Workshop on October 29, 2026, at 12:00 pm Eastern, featuring spooky paintings and spider web decorations. Paintings are by Orion Romero, the artist teaching the workshop. MEAction logo in bottom corner.
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Fliss Alc @flissaki.bsky.social · 07/09/2025
Interested in participating in research into #ME/CFS #LongCovud #Fibromyalgia? Sign up to OMF’s new global studyME registry!
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Fliss Alc @flissaki.bsky.social · 07/09/2025
📌
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Fliss Alc @flissaki.bsky.social · 03/09/2025
A promising case series using combination antivirals for #LongCovid - thanks to the authors for doing and sharing this, here’s hoping for an RCT follow up 🙏
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Fliss Alc @flissaki.bsky.social · 02/09/2025
ThereForME campaign update #pwME #pwLC @thereforme.bsky.social open.substack.com/pub/therefor...
open.substack.com
Campaign Update #25: #ThereForME is back!
Dear readers, we’re happy to let you know that #ThereForME is back in action!
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Dr. Lucky Tran @luckytran.com · 31/08/2025
New Mexico has issued a public health order that removes federal restrictions to COVID-19 vaccine access so that pharmacies in New Mexico can vaccinate people of all ages and risk profiles. Every state need to do this!
PUBLIC HEALTH ORDER
NEW MEXICO DEPARTMENT OF HEALTH
SECRETARY GINA DEBLASSIE
AUGUST 29, 2025
Ensuring Availability of COVID-19 Vaccine for the 2025-2026 SeasonTHIS ORDER supersedes any previous order, proclamation, or directives to the extent they are in conflict. This Public Order shall take effect immediately and remain in effect until such time as it automatically expires one year from the date of issuance, or until such time as the New Mexico Department of Health Cabinet Secretary rescinds it.
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Fliss Alc @flissaki.bsky.social · 30/08/2025
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Tom Kindlon @tomkindlon.bsky.social · 30/08/2025
Resources for Caregivers (M.E.), from @chronicliving123.bsky.social chroniclivingtherapy.com/resources-ca... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #SevereME
	
Resources for Caregivers (M.E.)



Prompted by Ian Nye (see the first article above) who commented that he'd found few resources for carers of people with M.E. I decided to track some down. I was helped by many people on twitter/X who shared their top tips and resources with me.
The result is a list of UK and international helplines, books and online support groups. It includes some resources for those supporting the severe and very severe patients. 
Hopefully this will be a useful resource for therapists to share with clients. It's in our news section and on our resources page. 


Check out our resources for caregivers (M.E.)
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Tom Kindlon @tomkindlon.bsky.social · 25/08/2025
TREATME: the Open Medicine Foundation's Mammoth ME/CFS and Long COVID Treatment Survey Results www.healthrising.org/blog/2025/07... Includes a summary plus an audio version of the full article & separately of the summary #LongCovid #MEcfs #CFS #PwME @openmedf.bsky.social @cortjohnson.bsky.social
HealthRising logo
TREATME: the Open Medicine Foundation's Mammoth ME/CFS and Long COVID Treatment Survey Results

In the largest survey of its kind, almost 4,000 ME/CFS and long patients told TREATME how effective 150 drugs and supplements (and a few other treatments) had been.

Not surprisingly some surprises - good and bad - were in store. Nobody would have guessed what the most efficacious drug would be, and along the way, some favorites took a hit.

Find out what happened in
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Fliss Alc @flissaki.bsky.social · 23/08/2025
Enjoy!
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#MEAction Network @meactnet.bsky.social · 21/08/2025
#MEAction will be hosting a Community Watch Party for this year’s Severe ME Artists Project Video Gallery on Thursday, August 28th at 4 pm PT/7 pm ET. We are trying to offer as many ways to view the art as possible. RSVP: www.meartistsproject.com/event-detail... #pwME #SevereME #Art #Artist
meartistsproject.com
Severe ME Artists Project: Community Watch Party | #MEAction
#MEAction will be hosting a Community Watch Party for this year’s Severe ME Artists Project on Thursday, August 28th at 4pm PT/7pm ET.
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Fliss Alc @flissaki.bsky.social · 21/08/2025
Also good to hear the devastating impact of severe ME on quality of life properly acknowledged Thanks Madeleine Finlay and @iansample.bsky.social #pwME #MECFS
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Fliss Alc @flissaki.bsky.social · 21/08/2025
Great to see the #DecodeME study covered by @theguardian.com @scienceweekly.bsky.social … plenty of discussion of how this *could mark a turning point for research, disappointingly little (nothing) on how this can’t happen until the dearth of funding is addressed 1/2
theguardian.com
Can science crack the mystery of ME? – podcast
Madeleine Finlay speaks to science editor Ian Sample about a new study of how genes affect people’s chances of developing ME/CFS, and to Nicky Proctor who has ME and took part in the research. She als...
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Fliss Alc @flissaki.bsky.social · 20/08/2025
Good work Bluesky 🤓 #academicsky
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Best for Britain @bestforbritain.org · 20/08/2025
More. More. More. "A total of 8,462 individuals have used [BfB's] digital platform to register complaints with Ofgem. The public has until Friday to voice their opinions on the application, after which Ofgem will decide whether to grant Tesla a licence." ~AA www.liverpoolecho.co.uk/news/uk-worl...
liverpoolecho.co.uk
Thousands object to Tesla bid to supply energy to UK homes
The company applied for a licence from the energy regulator last month
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Dr Ben King 🌍 @benking01.bsky.social · 20/08/2025
Protect yourself and your loved ones
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Fionna O’Leary @fascinatorfun.bsky.social · 07/08/2025
It isn’t a cure but it is a marked step forward in understanding why some people suffer so badly from post viral syndrome ME Ponting & colleagues uncovered eight “signals” in genetic code where people with ME tended to have markedly different gene variants compared with the general population.
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Fliss Alc @flissaki.bsky.social · 31/07/2025
📌
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Fliss Alc @flissaki.bsky.social · 02/07/2025
The news I’ve been waiting for! Made my day 😊
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Fliss Alc @flissaki.bsky.social · 02/07/2025
Such great news, thank you for moving forward on this, and with the best team of researchers too 😊
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Fliss Alc @flissaki.bsky.social · 02/07/2025
Extensive evidence of persistent virus/spike & +ve clinical reports strongly support this trial from both theoretical and real world perspectives Today’s announcement is a big boost to everyone who felt mega-frustration and disappointment that the world was abandoning this promising treatment ave
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Fliss Alc @flissaki.bsky.social · 02/07/2025
Other companies’ mAb’s (eg evusheld) have used successfully (off label) but have been discontinued due to limited efficacy in their licenced indication (acute covid).
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Fliss Alc @flissaki.bsky.social · 02/07/2025
There are multiple independent clinical success stories for Pemgarda and other mAb’s. However Pemgarda is licenced in the US only for Covid prophylaxis, and is not licenced in UK or EU
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Fliss Alc @flissaki.bsky.social · 02/07/2025
Amazing news of forthcoming trials to test anti-spike mAb’s in #LongCovid and #PostVac 🥳 Lead by @putrinolab.bsky.social @michaelpelusomd.bsky.social and Amy Proal in collab w Invivyd, the manufacturer of Pemgarda.
investors.adagiotx.com
Invivyd and Leading Researchers Form SPEAR (Spike Protein Elimination and Recovery) Study Group to Assess the Effects of Monoclonal Antibody Therapy for Long COVID and COVID-19 Post-Vaccination Syndro...
SPEAR Study Group initiated following multiple, independent reports of substantial clinical benefit associated with PEMGARDA ® (pemivibart) therapy among people with Long COVID SPEAR Study Group colla...
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Fliss Alc @flissaki.bsky.social · 01/07/2025
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Fliss Alc @flissaki.bsky.social · 29/06/2025
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Crazie Daizee @craziedaizee.bsky.social · 29/06/2025
ooh there's a NEW Dr. David Systrom video even though I am very familiar with the topics he is discussing, LDN and and Pyridostigmine, I never miss anything he presents because if anyone is going to come up with treatments or cures for #LongCovid / #meCFS it might be him, always cutting-edge stuff
youtube.com
David Systrom | International ME/CFS Conference 2025: LDN and Mestinon in ME/CFS and Long COVID
YouTube video by MECFS Research Foundation
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Fliss Alc @flissaki.bsky.social · 27/06/2025
Congratulations!
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Fliss Alc @flissaki.bsky.social · 26/06/2025
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Fliss Alc @flissaki.bsky.social · 26/06/2025
A mechanistic proof-of-principle for persistence of pathogen fragments driving aspects of chronic Lyme #ME/CFS #LongCovid
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Fliss Alc @flissaki.bsky.social · 21/06/2025
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Tom Kindlon @tomkindlon.bsky.social · 20/06/2025
Florida, USA: People who had COVID at anytime & recovered (no persistent symptoms that started with acute COVID) are sought for $4m CDC-funded study. ME/CFS-aware researchers want to compare #longCovid to #MECFS but need controls Survey link: redcap.nova.edu/redcap/surve... Please share widely 🙏
 

COVID-UPP Study











We’re nearing the finish line on our important CDC study designed to compare Long COVID to ME/CFS — a vital step toward advancing our mission. But we still need healthy control participants!
We are looking for anyone who had COVID at anytime and recovered (no persistent symptoms that started with acute COVID).
 
We particularly need: males between 55-65 years old and females between 18-50 years old.
  
The study involves filling out health related surveys and spending a half day at our clinic (Davie or Kendall) completing on-site tests. Our evaluation includes a physical exam, cognitive tests, spirometry etc.  There is a financial compensation for your time.   

Thank you for considering this opportunity and helping spread the word!
 
If you’re interested in participating, please complete our COVID-UPP survey: HERE

If you have any questions please email our team at postcoviduppstudy@nova.edu.
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Patient-Led Research Collaborative @patientled.bsky.social · 20/06/2025
A new #LongCovid clinical trial is enrolling for bezisterim, an investigational anti-inflammatory drug that crosses the blood-brain barrier. It has been studied in neurological & neurodegenerative disorders, including Alzheimer’s & Parkinson’s. 1/
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Fliss Alc @flissaki.bsky.social · 19/06/2025
This is a really important and brilliantly delivered presentation from @binitakane.bsky.social. *please* watch, share, and urge your MP to get involved. We can and must make this change happen #ME/CFS #LongCovid #GreatestMedicalScandal
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Fliss Alc @flissaki.bsky.social · 18/06/2025
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Fliss Alc @flissaki.bsky.social · 17/06/2025
This is horrendous, and incalculably dangerous for a group with such a precarious health condition. Unsurprising though, and presumably the same applies to people with ME/CFS and other infection-associated chronic illness. Proper social care for this group is as lacking as medical care
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Fliss Alc @flissaki.bsky.social · 15/06/2025
Fantastic new initiative from @ruthbrooker.bsky.social to get clean air for kids in schools. This simple action can have so many benefits… Starting in Bristol - help it spread nationwide! #pwME #pwLC #CleanAir4Kids www.cleanairforkids.co.uk
cleanairforkids.co.uk
Clean Air for Kids
Bringing Clean Air to the Kids of Bristol and Beyond. We wouldn’t let our children drink dirty water, why are we letting them breathe dirty air?
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Brian Groom @groomb.bsky.social · 15/06/2025
The IRA detonated a 3,300lb lorry bomb on Corporation Street, Manchester, at 11.20am #OTD 1996, the biggest bomb detonated in Britain since WW2. Four coded warnings meant that no one died, but 220 were injured and damage to the city's retail and commercial core was extensive.
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Fliss Alc @flissaki.bsky.social · 10/06/2025
Love the cover!
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Fliss Alc @flissaki.bsky.social · 09/06/2025
Woohoo! Congratulations 🎉
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Solid Evidence @solidevidence.bsky.social · 06/06/2025
This is so cool. I’m pleased to share version 1 of our new dashboard for displaying data from our wastewater metagenomic project. This is a collaborative projected between MU, U. Wisc, and SecureBio; funded by Inkfish and Open Philanthropy. 1/ lungfish-science.github.io/wastewater-d...
lungfish-science.github.io
dashboard2 – 𓆞 lung.fish Data Explorer
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Fliss Alc @flissaki.bsky.social · 07/06/2025
Yes. It won’t be for everyone - nothing is - but it could help some, and could help us understand more.
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Fliss Alc @flissaki.bsky.social · 07/06/2025
This article demonstrates the problem w the very broad WHO definition of long covid. I saw no reference to PEM in this article, and couldn’t find the cited studies to check. So in all likelihood these studies did not include pts w the ME-like illness so many of us mean by ‘long covid’
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Fliss Alc @flissaki.bsky.social · 07/06/2025
No
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bioRxiv Microbiology @biorxiv-microbiol.bsky.social · 01/06/2025
Distinct immunity protein families mediate compartment-specificneutralisation of a bacterial toxin www.biorxiv.org/content/10.1101/202…
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Fliss Alc @flissaki.bsky.social · 07/06/2025
Fantastic to see such positive reports emerging from clinical use of GLP-1 RAs (ozempic et al) for #LongCovid. Alongside @zalaly.bsky.social’s research and new GLP-1 RAs coming to market, hoping this avenue into long Covid, #ME/CFS and #MCAS research and treatment will really take off soon
healthrising.org
The GLP1 Agonists: An Exciting New Class of Drugs For ME/CFS, FM and Long COVID? - Health Rising
GLP-1 agonists like Ozempic could be surprisingly helpful in diseases like chronic fatigue syndrome, fibromyalgia and long COVID.
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Pádraic Fogarty @whittledaway.bsky.social · 05/06/2025
The case for ending all fishing and mining on the 'high seas' www.nature.com/articles/d41...
nature.com
Why we should protect the high seas from all extraction, forever
Exploitation of the high seas risks doing irreversible damage to biodiversity, climate stability and ocean equity. A consensus must be built now to save them.
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Jack Wallington @jackwallington.com · 04/06/2025
Concern over planning bill amendments www.theguardian.com/politics/202...
theguardian.com
Labour MPs poised to rebel over planning bill amid concerns for nature
Ministers understood to be drawing up amendments to bill to try to head off threatened rebellion by two dozen MPs
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Nature Communications @natcomms.nature.com · 04/06/2025
A single immunization with an intranasal vaccine provides effective protection and sustained immunity against highly pathogenic avian #influenza viruses in animal models #H5N1 #birdflu #vaccines
bit.ly
Intranasal influenza virus-vectored vaccine offers protection against clade 2.3.4.4b H5N1 infection in small animal models - Nature Communications
Current seasonal flu vaccines hardly protect against emerging H5N1 such as clade 2.3.4.4b circulating in cattle. Here, the authors show that a single intranasal immunization of DelNS1-H5N1 vaccine candidates provides effective protection and sustained immunity against highly pathogenic avian influenza A viruses.
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