physically tasking and impossible. A proper gastric emptying study aka scintigraphy takes 5 hours, just for the imaging part.

Those people are actively dying locked up in inappropriate hospital wards or already dead, but I agree with you. One big obstacle, among the many that we pwME have to face, is being properly assessed for delayed gastric emptying, which is rarely done before needing tube feeding and which is also

Wow, what a relief Ezra! KP? And is the eye condition nystagmus per chance? Don’t worry if you prefer not to reply here.

That is why your voice is very much needed and yes the deadline is September 30. You can request the questionnaires by emailing info@bacme.info 💙💙💙🙏🏻💙💙💙

Powerful closing remarks from PLRC co-founder @ahandvanish.bsky.social at the Keystone Symposia on #LongCovid last week, reflecting on the state of research & the journey of the patient community:

"In our immediate presence, time slows, while the world beyond speeds up & moves without us”

Summaries of presentations made at the recent Patient-Led Research Collaboration (PLRC) @patientled.bsky.social conference

solvecfs.org/plrf-event-h...

Prepared by Solve ME/CFS Initiative @solveme.bsky.social

#LongCovid #MEcfs

Re: my last boost of @patientled

Really loved Hannah's point that #LongCovid is not mysterious & unknown....whenever you read or hear that, replace it with "complex, devastating and increasingly well-understood as an incurable neuro-immune disorder."

#Medsky🧪 #IDsky #publichealth A comprehensive age-stratified profile of #SARSCoV2 immune responses, revealing a progressive shift from antiviral STAT1 to proinflammatory STAT3 signaling with age.This mechanisms helps to explain the heightened susceptibility of older adults to severe viral disease.

The recommendations are part of the AAP's annual childhood immunization schedule, which includes guidance for COVID, flu and RSV vaccines for those aged 18 and younger.

The American Academy of Pediatrics (AAP) said on Tuesday that children ages 6 months to 23 months should receive a COVID-19 vaccine, in contrast with federal health officials.

Here are the recommendations to follow now that ACIP is a broken arrow.

Opinion | The Playbook Used to ‘Prove’ Vaccines Cause Autism (Gift Article) Data can easily be manipulated to show a causation that doesn’t exist.

A must-read, must-share piece - clearly deconstructing the shoddy science of the Geiers (who are inexplicably in charge of studies at HHS).

Consider this an early warning for what lies ahead. 🛟🩺🧪

www.nytimes.com/interactive/...

Please support the vital advocacy work of @meactnet.bsky.social with a donation, if you can funraise.org/give/Myalgic...

And it is paying off! As you may have seen, the Senate appropriations committee recently included language about “the urgent need to advance research for ME/CFS,” as a result of our joint advocacy work with @notjustfatigue.bsky.social!

#MyalgicEncephalomyelitis #MECFS

blue square image with white clouds in the corners. A white frame around the #MEAction logo and the words, Update: ME/CFS Research Roadmap Community Letter to NIH

NIH Advocacy Update!

#MEAction has been advocating for the past year to fund the ME/CFS Research Roadmap.

We have been approaching funding for the roadmap from two sides: congressional support and securing direct funding from the director of the National Institutes of Health (NIH).

#pwME #NIH

these concepts can be generalized to all genetic diseases.
#IEIs #Immunology #Genetics #Epigenetics #Mosaicism

penetrance that we have recently proposed: genetic variant quality, epigenetic and genetic modification, environment, and mosaicism. For each of these principles, I review what is known and unknown and propose future experimental approaches to fill the gaps in our knowledge. I focus on IEIs, but

Thus, most IEIs are actually Mendelian disorders with incomplete penetrance. Despite the frequency of incomplete penetrance in IEIs, the conceptual framework for systematically categorizing and explaining these occurrences remains limited. Here, I expand on four recurrent themes of incomplete

Thank you @alexisme.bsky.social

You can request all 3 versions and go through them yourself. I think it is important that you do that. 💙💙💙🙏🏻💙💙💙

our findings.

The results of the MR analysis revealed no causal relationship between MDD and ME/CFS. The pleiotropy test revealed that causality bias was improbable, and no evidence of heterogeneity was found among the genetic variants. Finally, the leave-one-out test confirmed the stability and robustness of

Relationship between major depressive disorder and myalgic encephalomyelitis/chronic fatigue syndrome: a two-sample mendelian randomization study analysis - Scientific Reports Scientific Reports - Relationship between major depressive disorder and myalgic encephalomyelitis/chronic fatigue syndrome: a two-sample mendelian randomization study analysis

Relationship between major depressive disorder and myalgic encephalomyelitis/chronic fatigue syndrome: a two-sample mendelian randomization study analysis The results of the MR analysis revealed no causal relationship between MDD and ME/CFS. www.nature.com/articles/s41...

energy management strategies like pacing from the outset can lead to a cascade of immunological and neurological dysfunction, resulting in a permanent worsening of the disease. (5, 6) "Rest is best" must be a primary public health message.”
@alexisme.bsky.social

“Fourth, the management section omits the single most critical intervention for preventing long-term disability: the early identification and management of Post-Exertional Malaise (PEM). For both ME and a significant subset of Long Covid patients, PEM is the hallmark symptom. Failure to teach

The survey can be completed online, or you can request a pdf copy from info@bacme.info
It is open until 30th September 2025

People with #ME, carers, and healthcare professionals in the UK with experience of tube feeding are invited to complete the ME/CFS Tube Feeding Survey for BACME.
bacme.info

#EndMalnutritionInME

In severe #ME, sometimes oral intake cannot meet nutritional needs. Tube feeding and intravenous saline may be necessary. These can help conserve evergy as well as prevent malnutrition and dehydration.
#SevereMEDay
#EndMalnutritionInME #HANWeek
www.mdpi.com/2227-9032/9/...

BACME ME/CFS Tube Feeding Survey Take this survey powered by surveymonkey.com. Create your own surveys for free.

@swastrosarah.bsky.social Did you see this? BACME ME/CFS Tube Feeding Survey(s) www.surveymonkey.com/r/WYW857D

Hot off the press! Read our report, 'Safer shared air - a critical accessibility and inclusion issue' online here 📖 https://buff.ly/40Wgb7v

#CleanAir #InclusionMatters #SaferSharedAir #SaferAirProject