fadra tedesco

Long time PwME, and parent of PwME fighting for better access to care and treatments. Hope begins in the heart.

[fadra tedesco @318Fadra]

Oh no!

[Bottsie Hicks @BottsieHicks]

I was considering running off the @MountSinaiNYC manual to put in my go-bag I'm preparing in case I have to go to the hospital, and a friend alerted me to this.
@PutrinoLab doesn't seem to really get PEM in #MECFS at. all. if recommending this! This is GET which makes us worse!😩

[Ror Preston @RorPreston]

It's brilliant to see a conference dedicated to PEM!

📅 Demystifying PEM - 10th May, Online & In-Person

As @wecrunchme's analysis shows, PEM seems significantly under-represented in LC & even ME research!

Hosted by Medical University of Vienna, in colab with @weandmecfs 💙

[NotRecovered @Not_Recovered]

ME/CFS is one of the most common neurological diseases, stealing the lives of millions worldwide — yet it remains invisible.

No cure, no treatment, no outcry.

We need change.

[Andrew Green @AndrewG76201347]

@Z3R0Gravitas @sunsopeningband @joshual_tm Also @PhysiosForME @ClagueNjc36 showed severe patients are over anaerobic threshold just sitting doing a 5 min cognitive task.

[Richard Lewis @Z3R0Gravitas]

Oh gosh, could this be happening in some with #MEcfs & #LC? Burning nerve myelin for emergency energy.

Was it @sunsopeningband describing us as (metabolically) like extreme athletes?

Also, similar to @joshual_tm's protocol focus on collagen synthesis, to replace that burned?

[Jeannette Burmeister @JKBurmeister]

Please participate in this Call to Action to #RetractNathPaper

See bottom of part 4 of my analysis of "Effort Preference."

Thank you!

https://t.co/AUYxRYCdh5

[Julie Rehmeyer @julierehmeyer]

Unless Congress acts in the next three weeks, Medicare will stop covering telehealth. For people like me, too sick to leave home for months, that would mean losing all access to healthcare. Please sign this petition prodding your representatives to act: https://t.co/VWaHtjAm0h

[Long Covid SOS @longcovidsos.bsky.social @LongCovidSOS]

"The most contagious period is shortly before they become symptomatic - 2 to 3 days beforehand, and shortly after"

Asymptomatic transmission - this is how #SARSCoV2 does spreads so successfully

Prof Beggs @covidinquiryuk

[charlos @loscharlos]

New #LongCovid paper:

"Upon physical activity, affected patients exhibit reduced systemic oxygen extraction & oxidative phosphorylation capacity.. these are mediated by dysfunctions in mitochondria & microcirculation.. maintained by.. immune activation." https://t.co/Lgko2FwByT

[Sten Helmfrid 🇺🇦 🇬🇱 @StenHelmfrid]

Did you know that the evidence base for #MECFS has been reviewed by several impartial expert committees, for example the Canadian Consensus Report 2003 and the NAM/IOM report 2015? The conclusion is that ME/CFS is serious, chronic, complex multisystem disease. #MEAwarenessHour

[The Ehlers-Danlos Society @TheEDSociety]

📢New Research Identifies Potential Biomarkers for Diagnosing Hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD)!

🩸A recent study funded by The Ehlers-Danlos Society, and published in the American Journal of Medical Genetics, has identified potential blood-based biomarkers that could help diagnose hEDS and HSD.

❗This discovery is significant because diagnosing hEDS and HSD has been challenging due to the lack of established laboratory tests and molecular markers.

What was the study, and what did it find❓

🔬In this study, researchers examined blood samples from 466 adults, including 94 diagnosed with hEDS and 80 with HSD.

1. The study revealed the presence of a specific 52 kDa fragment of fibronectin in the blood of every individual with hEDS and HSD. This fragment was notably absent in healthy controls, individuals with other types of EDS, and those with various kinds of arthritis.

2. The consistent presence of the 52 kDa fibronectin fragment in individuals with hEDS and HSD suggests a possible common underlying pathophysiology, thus questioning the differentiation between these conditions.

3. Additionally, a fragment of collagen I was found in all individuals with hEDS and HSD, although this fragment was also present in other conditions.

What could this study mean❓

The identification of these fragments could lead to the development of the first blood test for hEDS and HSD, providing a more reliable diagnostic tool for healthcare providers, and reducing the time to diagnosis, which currently averages around 12 years.

What are the next steps❓

The study's findings are a significant step forward, but the authors emphasize that before this test is ready for diagnostic use, other investigators must confirm the results in additional cohorts of hEDS, HSD, and controls.

The Ehlers-Danlos Society is sponsoring further confirmatory work. Currently, no diagnostic lab offers this test, but if validated, it could become an important tool in diagnosis and treatment trials and provide new insights into the underlying causes of hEDS and HSD. Of course, we will keep you up to date with all developments!

Find an FAQ and further information, including a link to the research paper here: https://t.co/1rrN1bcGvS

#hEDS #HypermobileEDS #HSD #hypermobility #hypermobilityspectrumdisorder #EhlersDanlossyndrome #medtwitter #meded

[It's M.E. Linda 💙 😷 @HappyHoundHouse]

#MEcfs
#MaeveInquest
#RealitiesOfME

I've never understood the argument that GPs are inundated by M.E. patients.....
I only trouble them if brand new, concerning, symptoms

Friend asked which speciality/Consultant looked after me & I almost choked laughing
🫤

[Janet Dafoe @JanetDafoe]

Trial By Error: A Deeper Dive into the Inquest's "Findings and Conclusions" | Virology Blog https://t.co/k1kpimd4fK

[Billy Hanlon @bhanlon15]

News 10: "New study identifies long Covid DNA profile"

'A new Albany Medical Center study has shown that levels of methylation in blood DNA of long Covid patients differ from those of health patients.'

https://t.co/uWO05wadz4

[Eric Feigl-Ding @DrEricDing]

JUST IN— W.H.O. Declares Global Emergency Over New Mpox Outbreak. The threat this time is deadlier. Since the beginning of this year, the Democratic Republic of Congo alone has reported more than 14,000 mpox cases and 524 deaths. Those most at risk include women and children under 15. The outbreak has spread through 13 countries in Africa, including a few that had never reported mpox cases before.

(Gift 🎁 link)
https://t.co/MTLSx7k8W0

[Tom Kindlon @TomKindlon]

Pre-chopped fruits and veggies make it possible for so many people with various disabilities to prepare healthy meals and maintain their energy.

#disabled #spoonie #chronicillness #mecfs #longcovid

[Nicholas Boyd-Gibbins, MEng, PhD @NBoydGibbins]

I've spoken to many of the top ME/CFS researchers in the world and all of them told me they struggle to get funding

Today I heard about one of the top ME/CFS research clinicians asking for advice from a top scientist and saying they may have to change focus

[Billy Hanlon @bhanlon15]

Chicago Business: 'Long COVID's brain fog doesn't lift for years'

'Neurological symptoms can linger even two or three years following a COVID-19 infection for more than 60% of those who contract the disease...'

https://t.co/KFfJlJvo8f

[S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic @dysclinic]

In a review of one of my papers, one reviewer brought up "functional" etiology and cited a case report of one patient with post-Covid FND... my paper is on post-Covid #POTS and small fiber neuropathy with references to large studies on #LongCovid, not case reports. Yet some people continue to be dismissive of scientific literature while endorsing their beliefs with N=1 to back themselves up. 🙄