Fliss Alc
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flissaki.bsky.social
Fliss Alc
@flissaki.bsky.social
410 followers 990 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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flissaki.bsky.social
Fliss Alc @flissaki.bsky.social · May 12
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
longcovidadvoc.com Long Covid Advocacy @longcovidadvoc.com · May 12
Today is #MEAwarenessDay
🐋 Let's take a deep dive into what ME is
and
😇 Why allyship is so important
1/15
flissaki.bsky.social
Interested in participating in research into #ME/CFS #LongCovud #Fibromyalgia?

Sign up to OMF’s new global studyME registry!
September 7, 2025 at 9:11 AM
flissaki.bsky.social
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 🙏
September 3, 2025 at 1:43 PM
flissaki.bsky.social
ThereForME campaign update

#pwME #pwLC @thereforme.bsky.social

open.substack.com/pub/therefor...
Campaign Update #25: #ThereForME is back!
Dear readers, we’re happy to let you know that #ThereForME is back in action!
open.substack.com
September 2, 2025 at 9:38 AM
Reposted by Fliss Alc
luckytran.com
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 Season THIS 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.
August 31, 2025 at 5:04 PM
Reposted by Fliss Alc
tomkindlon.bsky.social
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.)
August 30, 2025 at 12:42 AM
Reposted by Fliss Alc
tomkindlon.bsky.social
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
August 25, 2025 at 1:18 PM
Reposted by Fliss Alc
meactnet.bsky.social
#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
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.
www.meartistsproject.com
August 21, 2025 at 4:38 PM
flissaki.bsky.social
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
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...
www.theguardian.com
August 21, 2025 at 3:30 PM
flissaki.bsky.social
Good work Bluesky 🤓 #academicsky
altmetric.com Altmetric @altmetric.com · Aug 20
This is the definition of a failed social media platform.
August 20, 2025 at 1:44 PM
Reposted by Fliss Alc
bestforbritain.org
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...
Thousands object to Tesla bid to supply energy to UK homes
The company applied for a licence from the energy regulator last month
www.liverpoolecho.co.uk
August 20, 2025 at 10:23 AM
Reposted by Fliss Alc
benking01.bsky.social
Protect yourself and your loved ones
buds-disability.bsky.social BuDS Disability Service @buds-disability.bsky.social · Aug 19
The long period of historically lower Covid infection levels in England has come to an end. Covid infection levels in England have jumped nearly a fifth in the last week, and the overall Covid risk is just below High. Now is the time to start resuming strict precautions.

buds.org.uk/covid-19-ris...
Covid-19 Risk Assessment: Week Ending 17 August 2025
The BuDS Covid-19 Risk Assessment for the week ending 17 August 2025
buds.org.uk
August 20, 2025 at 6:08 AM
Reposted by Fliss Alc
fascinatorfun.bsky.social
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.
August 7, 2025 at 9:07 PM
flissaki.bsky.social
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.
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...
investors.adagiotx.com
July 2, 2025 at 5:46 PM
Reposted by Fliss Alc
craziedaizee.bsky.social
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
David Systrom | International ME/CFS Conference 2025: LDN and Mestinon in ME/CFS and Long COVID
YouTube video by MECFS Research Foundation
www.youtube.com
June 29, 2025 at 4:08 PM
flissaki.bsky.social
A mechanistic proof-of-principle for persistence of pathogen fragments driving aspects of chronic Lyme

#ME/CFS #LongCovid
June 26, 2025 at 8:38 AM
Reposted by Fliss Alc
tomkindlon.bsky.social
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.
June 20, 2025 at 8:01 PM
Reposted by Fliss Alc
patientled.bsky.social
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/
June 20, 2025 at 7:48 PM
flissaki.bsky.social
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
mediumwhite.bsky.social Peter White @mediumwhite.bsky.social · Jun 19
Excellent presentation made by Dr @binitakane.bsky.social
to the APPGs on ME and #LongCovid.

We are fortunate to have a Doctor who understands the problems, sees the need for change and can communicate so well.

Also some strong new thinking for #pwME.
(1 of 4 short vids)
June 19, 2025 at 12:31 PM
flissaki.bsky.social
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
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?
www.cleanairforkids.co.uk
June 15, 2025 at 9:35 AM
Reposted by Fliss Alc
groomb.bsky.social
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.
June 15, 2025 at 7:25 AM
Reposted by Fliss Alc
goodlawproject.org
There's a rare moment - with abortion rights increasingly under attack - to decriminalise abortion. Please use our easy tool to write to your MP asking them to support NC20, Stella Creasy's amendment. Please use and share in your networks. action.goodlawproject.org/decriminalis...
Ask your MP to put reproductive rights into law
The right to make decisions about our families and bodies is not protected by law. The 1967 Abortion Act allows people to seek abortion under certain circumstances but abortion otherwise remains a cri...
action.goodlawproject.org
June 12, 2025 at 6:04 AM
Reposted by Fliss Alc
solidevidence.bsky.social
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...
dashboard2 – 𓆞 lung.fish Data Explorer
lungfish-science.github.io
June 6, 2025 at 4:02 PM
Reposted by Fliss Alc
biorxiv-microbiol.bsky.social
Distinct immunity protein families mediate compartment-specificneutralisation of a bacterial toxin https://www.biorxiv.org/content/10.1101/2025.05.31.657152v1
June 1, 2025 at 4:17 AM
flissaki.bsky.social
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
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.
www.healthrising.org
June 7, 2025 at 6:23 AM
Reposted by Fliss Alc
whittledaway.bsky.social
The case for ending all fishing and mining on the 'high seas'

www.nature.com/articles/d41...
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.
www.nature.com
June 5, 2025 at 7:25 AM