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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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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’)

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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
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Fliss Alc @flissaki.bsky.social · Sep 7

Interested in participating in research into #ME/CFS #LongCovud #Fibromyalgia?

Sign up to OMF’s new global studyME registry!

It's ME(Jaime) @exceedhergrasp1.bsky.social · Sep 5

Now Danielle Meadows is talking about OMF's new registry... www.omf.ngo/signup-study...

OMF's StudyME Registry - Be Counted! - Open Medicine Foundation

Volunteer for research! Join OMF's free StudyME registry to accelerate ME/CFS, Long COVID & Fibromyalgia research.

www.omf.ngo

Fliss Alc @flissaki.bsky.social · Sep 7

📌

Fliss Alc @flissaki.bsky.social · Sep 3

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 🙏

Boo-trino Lab @putrinolab.bsky.social · Sep 3

Happy to share some new #LongCOVID data that went to pre-print today. Before we begin breaking this down, one caveat: this work MUST be validated by a well-powered placebo-controlled randomized controlled trial before we can get too excited, but this is

www.researchsquare.com/article/rs-7...

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Comparison of IMC-2 alone and IMC-2 and Paxlovid® shows substantial short and long-term efficacy in reducing symptoms of Long COVID with combination therapy: a case series

IntroductionLong COVID (LC), an infection-associated chronic illness (IACI) with no currently approved treatments. In order to address SARS-CoV-2 persistence and herpesvirus reactivation, which have b...

www.researchsquare.com

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Fliss Alc @flissaki.bsky.social · Sep 2

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

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Reposted by Fliss Alc

Dr. Lucky Tran @luckytran.com · Aug 31

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.

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Fliss Alc @flissaki.bsky.social · Aug 30

📌

Reposted by Fliss Alc

Tom Kindlon @tomkindlon.bsky.social · Aug 30

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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Reposted by Fliss Alc

Tom Kindlon @tomkindlon.bsky.social · Aug 25

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

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Fliss Alc @flissaki.bsky.social · Aug 23

Enjoy!

Reposted by Fliss Alc

#MEAction Network @meactnet.bsky.social · Aug 21

#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

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Fliss Alc @flissaki.bsky.social · Aug 21

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

Fliss Alc @flissaki.bsky.social · Aug 21

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

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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

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Fliss Alc @flissaki.bsky.social · Aug 20

Good work Bluesky 🤓 #academicsky

Altmetric @altmetric.com · Aug 20

This is the definition of a failed social media platform.

For scientists who use social media to encourage followers to visit external links (websites, papers, etc.,) here’s some data from this blog. For nearly a decade, Twitter was the #1 or #2 source of traffic to the blog almost every day. It hasn’t been in the top 10 sources of traffic to the blog in years, and a single SheetMusicPlus.com article from 2016 generates more traffic here than all of Twitter. So far this year, Bluesky is responsible for about 100x as much traffic as Twitter. AltMetric reports that despite Twitter having 10x the user base as BlueSky, BlueSky users share almost as many scholarly publications as Twitter users- and Twitter’s numbers are declining as Bluesky’s rise.

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Reposted by Fliss Alc

Best for Britain @bestforbritain.org · Aug 20

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

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Dr Ben King 🌍 @benking01.bsky.social · Aug 20

Protect yourself and your loved ones

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

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Reposted by Fliss Alc

Fionna O’Leary @fascinatorfun.bsky.social · Aug 7

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 · Jul 31

📌