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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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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 · 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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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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#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
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 · 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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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 · 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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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 · 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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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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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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Carole Cadwalladr @carolecadwalla.bsky.social · 03/06/2025
Jon Stewart is a legend & the way this show is trying to explain to a mainstream audience the gravity what is happening in the US is amazing. It was both thrilling & terrifying to be part of it. Thank you @TheDailyShow 👏 www.youtube.com/watch?v=vG7C...
youtube.com
Carole Cadwalladr - Broligarchs, AI, and a Techno-Authoritarian Surveillance State | The Daily Show
YouTube video by The Daily Show
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Tracy Palmer @proftracypalmer.bsky.social · 01/06/2025
Check out our latest preprint! We show that the same antibacterial toxin requires different immunity proteins depending whether it’s intra or extracellular
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Caroline Litman @alicemydaughter.bsky.social · 27/05/2025
To mark the 1st day of my 4th year without Alice I have an announcement: I’ve joined up with a determined group of women working to change the narrative around trans people. Women standing in solidarity with our trans siblings. Our first step is to ask cis women to read and sign our open letter ⬇️
chng.it
Not in our name: Women in support of the trans+ community
Can you spare a minute to help this campaign?
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Microbiology Society @microbiologysociety.org · 27/05/2025
Registration and abstract submission for Staphylococcus Great Britain and Ireland 2025 are open until 30 May 2025: shop.le.ac.uk/conferences-...
shop.le.ac.uk
Staphylococcus Great Britain and Ireland 2025 | shop@le
The aim of the meeting is to bring together leading experts as well as early career researchers and postgraduate students in Staphylococcal research. The r
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RSPB @rspb.bsky.social · 23/05/2025
Labour promised to restore nature. ❌ Instead, their Planning Bill contains a licence to destroy it. We offered solutions. We’re done waiting. Part 3 of the Bill would gut the laws protecting our most precious habitats & species. Without significant change, it must be scrapped.
Screenshot of a Guardian news article with the headline: “Wildlife charities urge Labour to scrap ‘licence to kill nature’ in planning bill.” The subheading reads: “Conservationists say part of bill allowing developers to avoid environmental laws by paying into nature fund should be ditched.” Below, a protest photo shows handmade signs in woodland. One reads “BAT FACTS – 14 species of bat in Buckinghamshire. Bats are the only mammals that can fly.” Another says “FAT CATS KILL BATS” in bold letters. The image underscores public anger and the scale of opposition to the proposed Planning Bill.
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Fliss Alc @flissaki.bsky.social · 22/05/2025
🎧 If you like a politics podcast and haven’t yet found Quiet Riot, you’re a year late to the party! Informed analysis and insight with warmth and humour from the brilliant @sturdyalex.bsky.social and @pimlicat.bsky.social Give it a listen!
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Adam @abrokenbattery.bsky.social · 22/05/2025
#MECFSAwarenessMonth – Day 22: Conclusion Thirty years on, major health agencies have rejected the psychological approach to #MECFS. Patients were right — but the impact has been devastating. Harm, stigma, denial of care, stalled research and patients have no treatments.
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Fliss Alc @flissaki.bsky.social · 21/05/2025
“PEM is a core requirement for diagnosis of ME/CFS and is pathophysiologically distinct from fatigue, deconditioning or depression and worsened by graded activity.”
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Christopher Webb @cwebbonline.com · 20/05/2025
MAKE NOISE ON THIS ONE‼️ They didn’t just deport him—they sent him to CECOT in El Salvador. Agelviz came here legally through the refugee resettlement program—fully vetted. But when he landed in Houston, CBP snatched him over a tattoo: a clock and a rose. No charges. No record. Just a suspicion.
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Fliss Alc @flissaki.bsky.social · 20/05/2025
I’ve just nominated my cardiologist @sunny-rae1.bsky.social for this award. She offers proper care and a real ray of light to those of us #pwLC #pwME lucky enough to live in the north east. If she’s your cardiologist, please consider nominating her. #pots #dysautonomia tinyurl.com/5n8pjuzx
newcastle-surveys.survey.fm
Celebrating Excellence Awards 2025
We’re very pleased to launch our Celebrating Excellence Awards 2025 which recognise the achievements of our staff, volunteers, and fundraisers. This is now a key annual event in the trust’s calendar ...
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Helen Morgan MP @helenmorganlibdem.bsky.social · 12/05/2025
Today is #WorldMEDay. ME is a chronic, complex and often misunderstood condition that has a huge impact on patients. People with ME have been let down for decades - it's time for that to end. Our @libdems.org.uk letter to the Government 👇
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Fliss Alc @flissaki.bsky.social · 12/05/2025
Tweet of the day
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Fliss Alc @flissaki.bsky.social · 12/05/2025
Today is ME awareness day. Please read and share this thread to understand more about ME (Spoiler - it’s much more than ‘chronic fatigue’ or ‘low energy’) 1/2
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Adam Bienkov @adambienkov.bsky.social · 12/05/2025
Why trying to out-Farage Farage is just never going to work for Labour. The most hardline, anti-migrant set of policies from any UK Government in recent years and the Daily Mail still portrays it as a betrayal
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Natalie Bennett @nataliegreenpeer.bsky.social · 12/05/2025
#DeepSeaMining - NO! We cannot destroy the last relatively pristine havens of #Biodiversity. We have so little knowledge of what is there www.bbc.com/future/artic...
bbc.com
Scars from the world's first deep sea mining test 50 years on
Half a century after the world's first deep sea mining tests picked nodules from the seafloor off the US east coast, the damage has barely begun to heal.
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Long Covid Advocacy @longcovidadvoc.com · 12/05/2025
404,000 pairs of shoes. One invisible illness.👟 This is what ME looks like in the UK: thousands lost to a disabling illness. Symbolised by shoes that stretch around London. 🛌Yet there is still no effective care Time for action! @ashleydaltonmp.bsky.social #MEAwarenessDay #MillionsMissing
Infographic showing the number of people with ME in the UK represented through shoes. The top half has bold white and pink text on a dark blue background reading: "404,000 people have ME in the UK. In shoes this is the length of the M25." Below is a map of Greater London with a purple line tracing the route of the M25 motorway. The implication is that 404,000 pairs of

shoes would stretch the full length of the

M25. In the bottom corner is the Long

Covid Advocacy logo.

Dismiss

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ThereForME @thereforme.bsky.social · 12/05/2025
Read our joint statement here: tr.ee/TsXPjMdu1A #pwME #pwLC #MyalgicEncephalomyelitis #FundThePlan @ashleydaltonmp.bsky.social @rthonwesstreeting.bsky.social @joplatt.bsky.social @eddavey.libdems.org.uk @tessamunt.bsky.social
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Long Covid Advocacy @longcovidadvoc.com · 12/05/2025
👋Now is the time for action @rthonwesstreeting.bsky.social Collaborative and united effort on #MEAwarenessDay from the community 🙌 #StrongerTogether 💙
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Adam @abrokenbattery.bsky.social · 12/05/2025
Clip from Re:News segment on #MECFS: “Waking up it’s like you’ve been hit by a truck. Everything’s shaking, vibrating internally. My brain feels inflamed, it’s like you’ve got a concussion.”
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Fliss Alc @flissaki.bsky.social · 12/05/2025
SOS Save Our Science #MECFS has been grossly underfunded since the beginning of time. MECFS is one of the few illnesses, along with #longCOVID, that just the act of living and existing makes you sicker. It is a cruel disease that can rob you of everything. 1/3
meaction.net
SOS: Save our Science
People disabled by ME and Long Covid across the UK send out an SOS.  It’s time to send out our SOS signal, if we want to have funded research. May 12th is Myalgic Encephalomyelitis Awareness Day. On t...
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Fliss Alc @flissaki.bsky.social · 12/05/2025
SOS Save our support systems Save our science Save our society There are #MillionsMissing from their lives due to #ME/CFS and #LongCovid Join the protest today! @meactnet.bsky.social 1/2
meactions.org
#MillionsMissing2025
For #MillionsMissing 2025, #MEAction is sending out an SOS.
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Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 12/05/2025
If you are able, please consider joining in on the #MillionsMissing action today. The livestream will start at 12 pm EST. See the RT post on other ways to join in from home! A great way to participate as an ally, is to RT people's stories, and help their voices circulate. Many incredibly
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Tom Kindlon @tomkindlon.bsky.social · 10/05/2025
I'm one of millions missing from our lives due to Myalgic Encephalomyelitis, each with their own challenges and losses. Unlike Covid lockdowns, the lockdowns we have dealt with for years due to #ME continue #May12 #MEcfs #PwME
MISSING

Photo of Tom Kindlon

TOM K ME/CFS SINCE 1989

MISSING FROM: GRADUATING, SPORTS, WORKING, INDEPENDENCE & LIVING IN MY OWN PLACE, TRIPS ABROAD, RELATIONSHIPS, CAREFREE LIVING WITHOUT DOZENS OF SYMPTOMS #MILLIONSMISSING #EMERGEAUSTRALIA #MECFS
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