Discover and read the best of Twitter Threads about #ms

Most recents (24)

Kurzbericht aus dem Gesundheitsausschuss des #LandtagBW zum Krankheitsbild #MECFS.

Link zum Live-Stream ab 10:00 Uhr heute: landtag-bw.de/home/mediathek…

#BildungAberSicher
Zunächst Einführung:
- 17 Mio Betroffene weltweit
- ca. 300.000 Betroffene in D (außer #LongCovid-Fälle)
- Symptomatik
- Erläuterung der Belatungsintoleranz (#PEM)
- Leidensweg bis zur Diagnose
2/x
Problematik der medizinischen Infrastruktur:
In BW besteht dringender Handlungsbedarf, da es bisher keine Klinik, kein Zentrum für die medizinische Versorgung gibt!
3/x
Read 50 tweets
”Det här blir en slags skenriktlinjer när jurister bestämmer vilken vetenskap som ska ingå i ett kunskapsunderlag.”
Oacceptabelt anser prof Anders Svenningsson som avgår som ordf i proriteringsgruppen MS.
->
#offlabel @dagensmedicin

dagensmedicin.se/alla-nyheter/n…
->
Mer om sakfrågan #rituximab vis #MS och #offlabel här i @lakartidn i oktober.
->
lakartidningen.se/aktuellt/nyhet…
->
Särskilt intressant följande i @lakartidn artikel från i oktober.
lakartidningen.se/aktuellt/nyhet…

Historien upprepar sig.
->
Read 13 tweets
Buchberger et al. schreiben über #MECFS und wie soll ich es sagen? Ich bin müde. Und #MECFS habe ich außerdem.

Die Abhandlung fokussiert sich auf #Fatigue und schließt, "die Forschung zu Fatigue [dürfe] nicht nur viral bedingte Erkrankungen umfassen".
link.springer.com/article/10.100…
"Zurück in die Zukunft!" möchte ich da sagen. Denn der Fokus auf das Symptom #Fatigue war gerade der Kardinalfehler, von dem sich die Forschung an #MECFS bis heute nicht erholt hat.

Charakteristisch für #MECFS ist das Symptom #PEM, nicht dagegen #Fatigue.
Diesen Umstand überspielt der Beitrag, indem an mehreren Stellen behauptet wird, auch Menschen mit krebsassoziierter Fatigue oder mit MS-Fatigue würden das Symptom #PEM aufweisen.

Wäre das Fall, wäre das sehr interessant. Allein: Belege werden dafür so gar keine geliefert (🤔).
Read 11 tweets
Day 823 of my #longcovid battle
a thread.
This will mostly be rambling, screaming out into the void as I've felt even more disconnected as my health continues to deteriorate.
Took cpl hrs to get this out & is all over the place but that's ok too.
1/21
"mild" case of covid February 2020 led to LC rearing it's ugly head by June 2020. In 1styear, I went from being healthy & active to suffering 100+ symptoms.
Each dr visit & scan found further degeneration & damage. I was met w dismissal & gaslighting from med community.
2/21
I found great solace & help in the LC communities on social media. It gave me strength to keep advocating for healthcare & finding ways to self manage symptoms until I could find a dr to listen.
I firmly believe I wouldn't have survived w out y'all.
3/21
Read 22 tweets
🆕 Mehr gute Nachrichten in Sachen #MECFS:

Es geht um eine 2016 begonnene #MECFS-Studie, die eine Kohorte mit niedrig zweistelliger Teilnehmerzahl aufweist, vorzeitig beendet werden musste und heute – also mehr als fünf Jahre später – immer noch keine Ergebnisse vorweisen kann.
Das klingt für #MECFS-Betroffene erstmal altbekannt und - wie üblich - nicht besonders erfreulich. Trotzdem ist diesmal alles anders und es könnte sich hierbei um die bislang vielleicht wichtigste #MECFS-Studie überhaupt handeln.
Es geht um die institutseigene #MECFS-Studie der NIH, angesiedelt am National Institute of Neurological Disorders and Stroke (@NINDSnews) und geleitet durch Dr. Avindra Nath, Neuroimmunologe und klinischer Direktor des NINDS.

Was macht diese Studie so besonders?
Read 13 tweets
Hallo Herr @HagelManuel, es freut mich sehr, dass Sie sich mit dem Thema #MECFS beschäftigen!

#MECFS ist der Name, den Betroffene und Wissenschaftler weltweit für das sog. "Müdigkeitssyndrom" verwenden, weil es bei dieser sehr schweren Krankheit eben nicht um "Müdigkeit" geht.
Ferner ist auch "Fatigue" nicht das Hauptsymptom von #MECFS, weshalb der Name "Chronisches Fatigue-Syndrom" ebenfalls unpassend ist.

Sie müssen außerdem wissen: Diese Krankheit ist weder neu noch selten.
Schon vor der Pandemie gab es allein in @thelaend ca. 35.000 Betroffene!
In 2021 unterschrieben innerhalb von 4 Wochen fast 100.000 Menschen die #SIGNforMECFS-Petition an den Bundestag.

@HagelManuel, hören Sie doch bitte mal kurz rein, was ich dem Petitionsausschuss über die Lage der #MECFS-Betroffenen erzählt habe!
Read 7 tweets
I’m always listening
As long as my Google search of #MultipleSclerosisCauses yields “Possible” Causes, question every word, every Doctor.
Next tweet is more thoughts about your ideas Martin 😎🖖🏼
Of course if You Follow Me, You know I am fighting #MultipleSclerosis
#Gadolinium
War in #Ukraine
#trolls
Partisan Hate Speech/Censorship allowed by @paraga @Twitter with #Section230 Protection Racket by Lawmakers 🇺🇸
Pondering 🤔 our complex vascular system.
#pharma is a drug
Martin, started using @Apollo_Neuro and @ouraring September 2020. traveloguefortheuniverse.blogspot.com/search?q=Apollo+
My HRV never as low as Pre-Apollo. Gets me thinking about my years as an ICU Nurse. Blood Flow, Perfusion, that Pause during heartbeats that sends blood to the heart, takes toxins away.
Read 10 tweets
New @polybioRF podcast. I interviewed Dr. Tobias Lanz: MD + researcher in the lab of Prof. William Robinson at the Department of Rheumatology/Immunology at Stanford School of Medicine. Listen on Spotify (open.spotify.com/episode/4bTQss…) or watch on Youtube ()
2/ In the interview Tobias discusses this breakthrough study he led at Stanford. It showed that a cross-reactive antibody can contribute to #MS neuroinflammation thanks to molecular mimcry b/t an EBV viral protein (EBNA1) + a human CNS protein (GlialCAM): nature.com/articles/s4158…
3/ Tobias also describes this recent Harvard study which further implicates #EBV as a driver of MS. He talks about treatment for MS now that #viral activity is understood to be at the heart of the disease process: science.org/doi/10.1126/sc…
Read 7 tweets
🛣️ Ventura Highway 🛣️

"The spike protein is a PRION-LIKE PROTEIN...
The immune cells carry that prion-like protein into the SPLEEN...then in the spleen, the prion-like protein, which again, you can say is spike protein, causes the immune cells to start producing alpha-synuclein>
which is a prion-like protein linked to Parkinson's Disease. The immune cells in the spleen are making lots and lots of spike protein, it’s really toxic. They need to get rid of it. They stuff it into these exosomes...
These little nanoparticles…human manufactured nanoparticles>
What the ones will contain with the vaxxine is spike protein…. along with some miRNAs that are regulatory molecules, along with alpha synuclein...all of that’s packaged up in those exosomes and shipped out of those immune cells in the spleen.
Where it goes is, it travels along>
Read 10 tweets
Dietary Glycine Is Rate-Limiting for Glutathione Synthesis and May Have Broad Potential for Health Protection ncbi.nlm.nih.gov/pmc/articles/P… interesting 🧐 @sennasthunder @planetd1 @lambertdebb @Gadolinium_MRI Friends, you started me hopeful this chilly Virginia Morning.. 🎁
Spent a little time in @Google and will be headed back there sometime. @Wagner_Nephro interesting thoughts. @GavinGiovannoni Just read your post on #MS & Loneliness. Will comment later. This thread reminds me of my worldwide group of Twitter friends. No pressure, Nice People. ImageImage
I keep remembering a head nurse I had in ICU. She was scolding me for “making waves”. I couldn’t let wrong things just happen like burned out people often do. She said with hint of disdain “You’re always trying to fix something “ like it was a bad thing. Today it’s #Gadolinium 😎
Read 4 tweets
The story of the #BuildBackBetter has yet to be written. Let’s examine the 50 Republican US Senators who are voting against lifting children out of poverty, education,elder care, affordable prescription drugs, child care & family leave? What does this mean for YOUR STATE? Image
#ALABAMA Sen. Richard Shelby is voting against the #ChildTaxCredit “The Center on Budget &Policy Priorities found making the program permanent would benefit 93% of #AL children,lift 162,000 #AL children above/closer to poverty line & benefit 480,000 #AL children under 17. Image
#ALABAMA Sen. Tommy Tuberville has offered you no solutions; he has admitted that he “wouldn’t have a clue” how to address the current pandemic and recently told people that $600 per week in federal unemployment benefits was just “too much.” al.com/news/2021/12/a… Image
Read 46 tweets
1/9 משתף מחקר נוסף שלנו: MRI מח לפני הריון יכול לנבא התקפים קליניים של טרשת נפוצה לאחר לידה.
@AVDlaboratory
doi.org/10.1177/135245…
2/9 טרשת נפוצה היא המחלה הדה-מיאלינטיבית הדלקתית הנפוצה ביותר במערכת העצבים המרכזית. למעשה זו המחלה הנוירולוגית המגבילה הנפוצה ביותר שפוגעת בצעירים, ובעיקר בצעירות (גיל20-40).
3/9 חולות בטרשת נפוצה חוות פחות התקפים במהלך הריון, וידוע שהסיכון להתקף (relapse risk) עולה בתקופה המוקדמת שלאחר הלידה, וניתן לחיזוי על פי פעילות המחלה בזמן שלפני ההריון או במהלכו.
Read 9 tweets
Hola a todos.
Tanta veces nos preguntan a @mariofitzm, a mi y otros muchos colegas que estan dedicados al tema de la #MS. Que es un #DEA ? (desfibrilador externo automático). Vamos a explicarlo muy fácilmente. Va Hilo.
@MarianaLestelle
@natachadiz
@BombitaDarin
@LG_RDT
(1). Video
Es un aparato portátil que DIAGNOSTICA y puede TRATAR el paro cardíaco (#PCR) cuando es causado por la arritmia más imp. en los casos de #MS
que es la Fibrilación Ventricular (#FV) y puede restablecer el ritmo cardiaco normal. Mirá: #FV luego ritmo normal. @Facundo_Arana (2)
La desfibrilación consiste en emitir un impulso de corriente electrica al corazón, con el objeto de normalizar la actividad eléctrica del mismo. Los #DEAs son efectivos para muchos de los #PCR debidos a #FV pero son ineficaces..(3)
(Video #FV versus ritmo normal)
@ColoBV3
Read 9 tweets
The @US_FDA says you might retain a little, maybe forever.
They never get to the part that says #Gadolinium goes into veins of MRI patients without informed consent& Administering Tech & Ordering Doctor & Hospital Formulary don’t know why you’d need consent, it all comes out, No?
The #eecummings poem in my Head
#AlButNotQuiteMost Gad comes out in urine of MRI patients into the wastewater treatment plant and it flows unharmed into our waterways. Mined in China 🇨🇳 Using Slaves to mine Rare Earth Metals. Can I get Any of my Doctors Curious 🤨??
They don’t know,They don’t know.
They don’t think I could be accurately reporting my Symptoms which, conveniently for @Bayer overlap nicely with #MultipleSclerosis ,Obesity, HTN, DM, Seizures, Pain of an otherworldly nature. Nails grew straight through digit tips. Neurotic?
Read 8 tweets
Thank God @amazon @JeffBezos are way bigger than little old #MS riddled me, sometimes in a heap of hurt, no, that’s HURT 😢
I’ve written letters that never are answered traveloguefortheuniverse.blogspot.com/search?q=Canna…
Now found deltaeffex.com and prefer Delta 8, 10 to Cannabis for Symptoms.
So imagine my surprise as Virginia USA Quasi-Legalized a measured amount of Cannabis, There are New Laws and Regulations (feel the price of a nickel sack go astronomical) in pipe-line.
Banning Post office from delivering vaping products, and Other carriers will be banned too 🤔
Ahhh, I get it, the Legislators formulate their law building by the forces of Money Flow. Delta Effex developed and makes a Superior Hemp Product (legalized under Farm Bill). THC<0.3%. With #Terpenes that promotes, for me, less pain, more active, feel Better ❤️‍🩹
Read 4 tweets
Thank You @JordanTishlerMD for your information on #MedicalCannabis
Also for consultation with me. You helped me 👍🏼
Virginia USA Today Quasi legalized it with many hoops, scarce availability and prohibitive pricing. Is this Really what the Doctor ordered? @GovRalphNortham ?
I have a card.
3rd year.
No access.
Can have 4 plants, not 5.
My need far from recreational.
I have distressing symptoms of the #MonSter known as #MS.
All the lines of this complicated bill translates to money transfer
And micromanaging.
Too many details to go one by one.🙄
My Poor Doctors I Love at @UVA Hospital couldn’t quite grasp the #MedicalCannabis Application. I didn’t push it. In my experience working many years with Neurologists, they run Hot and Cold on using Cannabis for #MS symptoms. Don’t ask. Don’t tell.
Read 4 tweets
As soon as I saw Virginia, I knew it was a Hyper-Micromanaging bill.

virginiamercury.com/2021/04/07/mar…
Protects Business Cultivating/selling
Scares People trying to get #MedicalCannabis
Criminals don’t care Re: regulations
Virginia legislature calling #Cannabis “Marijuana’ 1st mistake
Virginia Pain Report.
When. July 1st rolls around,
Virginia quasi-legalized a Plant 🪴
#Cannabis
I will still be in Pain
I call it “The Rack of #MS

Bill Doctor, @GovernorVA signed
Is So Micromanaging
That #medicalcannabis will Not be Available to me
Not be Affordable 😢
virginiamercury.com/2021/04/07/mar… better have another coffee ☕️ before reading this tome. I keep waiting for #Disability Advocates to weigh in. This bill is too complicated. Medical Cannabis taking a back seat, no, put in the trunk. No access for Patients.
Read 5 tweets
#Gadolinium Always on (in) my mind… #MultipleSclerosis #MS
@sennasthunder @Gadolinium_MRI @lambertdebb @SandiTitus1 Latest thoughts: is rise in Multiple Sclerosis related to increased #Gad use to diagnose what might not be MS? @GavinGiovannoni You’re one of the most open minded
I’m sounding this cry for #Gadolinium Moratorium until PROVEN SAFE. I don’t Want to be a conspiracy nut who is mocked and humiliated. But I am willing to be mocked.
Gad is Bad. I saw what @sennasthunder dragged out of his fingers and I have the same. @threadreaderapp #unroll
Gad goes in vein of probably dehydrated person (drink fluids before MRI?)
MRI spins it all around
A little tiny amount of gad precipitates out and is trapped, or entwined or spun into filaments, hairs. Scars the worst. My C5 lesion lit up. Did a little #Gadolinium cross over?
Read 3 tweets
I Love Your Blog and Never miss an Episode of Real World Reporting on all things #MultipleSclerosis !
I had one issue with one post which was tainted with political bias. Your writing also carries an undertone. The President of the United States Twit account BLOCKED by @jack
You use the liberal code words:
Trump Supporters (75 million strong)
Conservatives (And.?)
Conspiracy Theorists (Define!)
Far Right Extremists (Who?)
I’m a #realDonaldTrump supporter, @DonaldJTrumpJr ‘s Dad
Conservative believes in individual Liberty
@threadreaderapp #unroll
I’m a Conspiracy Analyst. When the Progressive Liberals in my old home state Vermont tried to sell my farm for paying taxes 9 months late, nobody cared about this old disabled woman. traveloguefortheuniverse.blogspot.com/search?q=Tax+s…
Far Right Extremists are non existent in my friends circle.
Read 5 tweets
Today is #purpleday. I was diagnosed with #epilepsy at the age of 28 after having simple partial seizures for years. I had tonic-clonic seizures -- what used to be called grand mal seizures -- in my sleep, and never knew.
This was diagnosed in a very classy way -- I woke up with a bruised forehead and a broken toilet seat. Things like stroke and brain cancer had to be eliminated. I had just moved to NYC and started writing for @CBSRadio. Bad timing.
There are more than 40 different types of seizures. They are very personal. They have different 'triggers'. Mine are triggered by exhaustion. I had to stop working overnights, and I avoid early mornings, which is difficult in a business that starts at 3am and goes all night.
Read 17 tweets
The moral of this story is: if you work for ⁦@FoxNews⁩, advocacy on behalf of your dead relatives is purely political. If you work for other news outlets, advocacy is no problem at all.

Fox meteorologist Dean turns into fierce Cuomo critic apnews.com/article/fox-we…
I have never been a political person in my life. Ever. Ask anyone who knows me. I’ve been an advocate for #ms for 15 years. What about all the journalists who stand up for things that matter to them? It seems to be fine for some but not for others. Which is a shame.
One of the reporters kept asking me when I’m running for governor even though the subject was supposed to be about my husband’s parents who died in nursing homes. They don’t talk about them until the 9th paragraph. A throwaway quote from my grieving sister in law was gross.
Read 5 tweets
I deeply relate to this. After almost dying of ❤️ failure from #Lyme & being told by 11 “top” docs that in spite of my tick bite, bullseye, & classic symptoms, I could not poss still have it after a short course of doxy. Well, I did. 1/
And after the 12th doc saved my life (thx @StevePhillipsMD), I wrote my story in @HuffPost. I didn’t think anyone would care. But they did. The editor called & asked me to keep writing about this scandal as so many ppl were reading my story. 2/ huffpost.com/entry/how-11-t…
So I kept writing and began hearing from people all over the world, including a nurse from Ghana, who used my story to guide them back to health. I even interviewed celebrities who had gone through it like Daryl Hall. 3/ m.huffpost.com/us/entry/us_11…
Read 16 tweets
Influence policy w/ Postcards for America #PostcardsforAmerica
Elected Officials;All levels. In-depth Actions & Addresses
FB Postcarding Group
facebook.com/groups/postcar…
Page facebook.com/postcards4USA
Website postcardsforamerica.com
*Has #GOTV #VoteByMail & 50 States Dem Candidates
Check it out!
All Democratic Candidates for ALL 50 STATES #Congress2020, Govs, AGs, SoS
Postcards & Links to Support!
postcardsforamerica.com/all-democratic…
Ready-made Tweets & Posts for each Candidate here
postcardsforamerica.com/all-dem-candid…
Mega-thread
FB: facebook.com/pg/postcards4U…
ALL 50 states ALL Info you NEED #VoteByMail
Alternate ways to Request & Return #AbsenteeBallot
LINKS to apply #AbsenteeVoting
postcardsforamerica.com/vote-by-mail.h…
Medium article: link.medium.com/jfQjF4yXS9
FB Album; Postcards for each State facebook.com/pg/postcards4U…
THREAD
Read 12 tweets

Related hashtags

Did Thread Reader help you today?

Support us! We are indie developers!


This site is made by just two indie developers on a laptop doing marketing, support and development! Read more about the story.

Become a Premium Member ($3.00/month or $30.00/year) and get exclusive features!

Become Premium

Too expensive? Make a small donation by buying us coffee ($5) or help with server cost ($10)

Donate via Paypal Become our Patreon

Thank you for your support!