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

Sign up to OMF’s new global studyME registry!

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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 🙏

Campaign Update #25: #ThereForME is back! Dear readers, we’re happy to let you know that #ThereForME is back in action!

ThereForME campaign update

#pwME #pwLC @thereforme.bsky.social

open.substack.com/pub/therefor...

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.

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!

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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.)

Resources for Caregivers (M.E.), from
@chronicliving123.bsky.social

chroniclivingtherapy.com/resources-ca...

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #SevereME

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

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

Enjoy!

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.

#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

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

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...

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

Good work Bluesky 🤓 #academicsky

Thousands object to Tesla bid to supply energy to UK homes The company applied for a licence from the energy regulator last month

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...

Protect yourself and your loved ones

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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The news I’ve been waiting for! Made my day 😊

Such great news, thank you for moving forward on this, and with the best team of researchers too 😊

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

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).

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

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.

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David Systrom | International ME/CFS Conference 2025: LDN and Mestinon in ME/CFS and Long COVID YouTube video by MECFS Research Foundation

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

Congratulations!

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A mechanistic proof-of-principle for persistence of pathogen fragments driving aspects of chronic Lyme

#ME/CFS #LongCovid

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