Ruth Brannan

here mostly for the long covid and me/cfs research

[Ruth Brannan @RuthBrannan]

@liamsLCjourney I found the idea that I had to get out into daylight, if possible soon after waking up, quite stressful when I was at the low end of moderately sick. Getting out of bed and dressed enough to sit outside took up so much energy.

[Ruth Brannan @RuthBrannan]

@nvolpewild Saddleback caterpillar on my recycling bin.

[NichtGenesen @NichtGenesen]

https://t.co/ivzSaRpKB5

@DPtVBerlin @InMindMagazin

[Thomas Zimmer @tzimmer_history]

Ich hoffe sehr, Demokratie Americana findet ein Publikum, dass groß genug ist, die deutsche Version meines Newsletters zu tragen.

Wenn ihr mir dabei helft, die Nachricht unter die Leute zu bringen, bin ich euch aufrichtig dankbar!

https://t.co/3Pd1Yq2Z7d

[verenabee @verenabee]

@Support, bitte entsperren Sie den Account @mecfsawareness. Der Account wird von einer echten Person betrieben – keinem Bot. Der Account leistet wichtige Aufklärungsarbeit zu ME/CFS. Bitte prüfen Sie die Sperrung noch einmal. Vielen Dank! 🙏

[Christina Koch @CK65375]

Mich lässt dieser Tag wieder ratlos und hilflos und auch hoffnungslos zurück. Zwei Todesanzeigen, zwei junge Frauen, beide unter 40. Und in beiden Fällen der Wunsch, statt Blumen an die ME/cfs-Forschung (WE&ME Foundation) bzw. an die Deutsche Gesellschaft für ME/cfs zu spenden.

Es passiert zu wenig. Zu langsam.

[Ruth Brannan @RuthBrannan]

@ImmunoFever @NeurologistMom We have access to bloodwork, scans etc through lab and health system portals - why not have access to metrics in research studies? I don’t see any issues with ethics but as empowering and promoting inclusivity.

[Ruth Brannan @RuthBrannan]

@liamsLCjourney @bhanlon15 Just starting LDA; thank you for starting the subreddit.

[Ŧєuєяқїn∂🎮👩🏻‍🦼🪫🛌🎗️ @xFeuerkind]

Mich hat bei mildem Mecfs, eine im Vergleich sehr entspannte Reha, zur nun schwer Betroffenen gemacht.
Es reicht, die reha Pflicht bei #MEcfs, egal welcher Schweregrad, muss ein Ende haben! Es dürfen nicht noch mehr Menschen ine ine Verschlimmerung getrieben werden!

https://t.co/RJFfjuF7gF

[Dfrizz @Dfrizz007]

anybody have any German contacts that are based in German for an advocate for @Lisat89133876 . she is in dire need of a 3rd party helping her manage her illness. I heard from her this morning and she needs immediate help. anybody have a lead?

[Ruth Brannan @RuthBrannan]

@surf4children For me, pacing during the day is critical for sleep. Yoga nidra helps to get back to sleep if I wake up too early.

[Ruth Brannan @RuthBrannan]

@DaniBeckman I’m so sorry this is happening. Thank you for the work you do.

[Ruth Brannan @RuthBrannan]

@DrMichaelaBauer Ich helfe gern mit der Übersetzung ins Englische! (Kann keine DM schicken, aber meine email auf Ihrem Kontaktformular hinterlassen).

[Laiken Jordahl @LaikenJordahl]

I spent my day watching the place I love more than anything in the world be irreversibly destroyed for no reason.

There is not a single logical explanation for what DHS and its contractors are doing to Big Bend. It has become perfectly clear: they are using the destruction of this crown jewel national park as a vehicle to transfer billions of taxpayer dollars into the pockets of these politically connected contractors.

They are sacrificing our public lands so obscenely rich men who have never once set foot here can get even richer. And if they can do it here in Texas' wildest and most beloved national park, they will do it everywhere.

Governor Abbott, Senators Cruz and Cornyn: WHERE ARE YOU?!

[Romain @32Sfc46582]

Hello @melindagates,

I’m reaching out to draw your attention to myalgic encephalomyelitis (ME/CFS), a severe neuroimmune disease that remains dramatically underfunded and affects women disproportionately.

In its severe forms, patients can remain bedridden for years, unable to work or leave their homes, and sometimes unable even to wash themselves or tolerate light, noise, or a simple conversation. Some become completely dependent on their families while remaining fully aware and intellectually intact.

Despite millions of people being affected worldwide, and the growing urgency created by Long COVID, there is still no curative treatment.

Your commitment to women and to the most vulnerable could have an enormous impact here. Financial support for ME/CFS research could accelerate the discovery of biomarkers and, above all, treatments for patients who have sometimes been waiting for decades.

Thank you simply for taking the time to look at this disease and at those who are still living almost invisibly in the eyes of the world.

[Liam's LC/ME Journey @liamsLCjourney]

The link is live for the first 250 United States-based participants to get free mobile phlebotomy for @ChronicleBioAI's multiomics testing study:

https://t.co/jkAQ6EzVhK

I especially encourage fellow severe patients to take advantage of this - this is a rare research opportunity offering at-home collection.

Note that due to their phlebotomy partner, this is only available if you live in a larger city.

[Polly Patterson @PollyPAuthor]

Who wants to see a constructive response to the recent Kathleen Stock article?

I’ve just polished off my 800-word piece, ready to go to any journalist interested in giving the victims of the post-viral care crisis a say in the story currently being written for us by a minority of TikTokers, but mainly by their critics.

I’ve fired off personalised pitches to those with the power to help us. Now I need your help.

Please amplify this so it reaches the right person. 💚

#LongCovid #MECFS #Dysautonomia #MedicalGaslighting #ChronicIllness

[Tess Falor, Ph.D. | Renegade Research @tessfalor]

OMG. Last cryotube of #InnovationInn! 482 samples. 😅💪🏻🙌🏻

This was mine - from a 2nd blood draw of the day because I went downhill fast into full cognitive PEM a few hours after my first draw. We lucked out that the mobile phlebotomist was still here.

There were many benefits of doing an at-home study like this. Within 10 minutes of fully hitting my cognitive wall, I was sitting with the WAVi EEG on my head with the MIT team ready to test.

[Manuel Ruiz-Pablos @manruipa]

🔴 I think it is time to start taking seriously the disease model we have been proposing for Long COVID and ME/CFS.
For years, we have argued that persistent viral reservoirs may be the initiating event connecting many of the mechanisms observed in these diseases:

-Chronic antigenic stimulation.
-Immune hyperactivation.
-T-cell exhaustion.
-Reactivation of latent herpesviruses.
-Chronic inflammation.
-Loss of immune tolerance.
-Autoimmunity in genetically susceptible individuals.

A new study has now identified the kind of cellular response that this model predicts:
Persistent, virus-specific, cytolytic and exhausted CD8⁺ T cells directed not only against SARS-CoV-2, but also against EBV and CMV.

This is not simply “an immune system that forgot to switch itself off.”
These lymphocytes recognize viral antigens.
The more important question is:
What continues stimulating them?

(1/13)🧵

[Christina Koch @CK65375]

Sehr geehrter Herr Prof. Dr. @Karl_Lauterbach,

mein Name ist Christina Koch, ich bin 43 Jahre alt, ehemalige Lehrerin und lebe mit meinem Partner, der mich pflegt. Seit August 2023 bin ich schwer erkrankt an #MECFS, #POTS, Small-Fiber-Neuropathie #SFN, #MCAS und craniocervikaler Instabilität (#CCI). Hinzu kommt mein vorbestehendes Marfan-Syndrom. Ich bin im Pflegegrad 3 und größtenteils bettlägerig.

Ich wende mich bewusst an Sie, weil ich weiß, dass Sie sich für Betroffene von Long COVID und ME/CFS einsetzen. Genau deshalb habe ich Ihnen bereits per E-Mail und auf dem Postweg geschrieben und um ein Gespräch zur dramatischen Situation von Menschen mit ME/CFS und den häufig damit überlappenden Erkrankungen gebeten. Leider habe ich bis heute keine Rückmeldung erhalten.

Da Sie Ihren X-Account selbst betreuen, versuche ich nun diesen Weg. Mir ist vollkommen bewusst, wie stark Sie zeitlich eingespannt sind. Dennoch liegt mir dieser Austausch außerordentlich am Herzen. Die Lage der Betroffenen ist dramatisch, die Versorgung unzureichend und die wissenschaftliche wie politische Aufmerksamkeit für diese komplexen Erkrankungen weiterhin viel zu gering. Als direkt Betroffene mit mehreren schweren Komorbiditäten würde ich sehr gerne persönlich oder per Videocall mit Ihnen sprechen.

Ich wäre Ihnen unendlich dankbar, wenn Sie mir über eine direkte Nachricht (DM) eine Möglichkeit zur Kontaktaufnahme geben würden und bin bereit, mich jederzeit Ihren Terminen anzupassen.

Vielen Dank für Ihre Zeit und Ihr Engagement.

Mit freundlichen Grüßen
Christina Koch