Discover and read the best of Twitter Threads about #me

Most recents (24)

Another Interview with @VirusesImmunity 🙏 @zeitonline
#LongCovid #MEcfs #Lyme #Infections #PostVac
#Excerpts #Quotes 1/x Long🧵@Karl_Lauterbach‼️

„Iwasaki: Eine Möglichkeit ist, dass es sich bei Long Covid um eine anhaltende Virusinfektion handelt.….
Es gibt mehr als hundert Veröffentlichungen, in denen Forscher Teile des Virus oder seines Erbguts noch Monate nach der Infektion in verschiedenen Organen nachgewiesen haben.
Die zweite Hypothese ist die sogenannte Autoimmunität. 2/x
Es ist bekannt, dass verschiedene Viren eine Immunreaktion auslösen können, die sich gegen den eigenen Körper richtet. Dazu scheint auch Sars-CoV-2 zu gehören.
Die dritte Möglichkeit ist, dass im Körper schlummernde Viren wie Epstein-Barr-Viren oder andere Herpesviren 3/x
Read 17 tweets

Today is my second recovery day after going to see 7 yo grandson's playoff day. It was cloudy and unexpectedly cool, so I decided to risk being in the world irl.

I also played catch with him before the game. Afterwards I pitched whiffle ball curves to teach him how to hit a curveball. They were good curves and spooked him. Took maybe 30 pitches before he started to figure it out. We quit after he crushed one :-)

I also learned from my outing that watching 30 seven-year-old kids play baseball can just about trigger an #ActuallyAutistic meltdown. Take care and be safe!
Read 9 tweets
1/ Der menschenverachtende und einer Hexenjagd ähnelnde Umgang mit Warnern vor Nebenwirkungen der #Covid19-#Impfstoffe (Prof. Harald #Matthes, Charité und Andreas #Schöfbeck, BKK ProVita) durch Medien, Wissenschaftler und Funktionäre war allem Anschein nach weder eine … Image
2/ … Premiere noch einmalig in der Geschichte der Entwicklung und Zulassung von neuen #Impfstoffen.

Den Ausführungen von @PGtzsche1 im Buch „Impfen - Für und Wider“ nach zu urteilen, erhält man vielmehr den Eindruck, dass dieses Vorgehen eine bewährte Strategie von …
3/ … Impfstoff-Herstellern, Zulassungsbehörden, gewissen Medien und vermutlich mit #Interessenskonflikten behafteten Wissenschaftlern u. Ä. darstellt, um Zweifel an der Sicherheit von neuen Vakzinen zu zerstreuen und Warner und Kritiker mundtot zu machen. …
Read 21 tweets
„Müdigkeit“ (LL)

Symptome: Auswahl:
- Entkräftung bis auf die Knochen
- keine Anstrengung möglich
- eklatantes Herzrasen / besonders bei aufrechten Postiionen
- Blutdruckentgleisungen
- Schwindel
- Atemnot
- Sehstörungen bis hin zu Drop Outs
- Kopfgefässgeräusche zum Bersten
- Tinnitus
- Muskel-, Sehnen-, Nervenschmerzen
- Brennen auf der Haut, in den Schleimhäuten, im Gehirn, in den Augen usw.
- elektro-schockartige Stromstösse
- Lähmunsgerscheinungen
- Muskelschwäche
- Hautveränderungen / Exzeme / Haut platzt auf
- Pins & Needles (überall)
- Haarausfall
- Verlust von Bindegewebe (auch keine Fingerabdrücke mehr)
- nicht fähig zu sitzen, zu stehen, nicht fähig mehr als 5 Schritte zu gehen
- nicht fähig autonom für sich selbst zu sorgen usw.
Read 4 tweets
Vroeger – voor #LongCovid – was ik kunsthistoricus. Ik was dus niet altijd al een schreeuwende patiënt op Twitter. Mijn carrière is helaas gesneuveld, maar vandaag bedacht ik dat mijn oude en nieuwe leven soms best samengaan. #LongCovid en #ME de kunsthistorische versie 🪡
Je wordt na Covid niet meer beter. Bummer. Het is duidelijk dat je ziek bent - voor jou althans - maar medici zijn sceptisch. Tachycardie? Angst! Hartkloppingen? Stress! Tintelingen? Hyperventilatie. Uitgeput? Depressie!

(Caravaggio, De ongelovige Thomas, 1600, Slot Sanssouci) Image
Hulpverleners zonder behandelplan, oftewel “herstelzorg”. Je krijgt steeds tegenstrijdig advies. Wanneer je huisarts, specialist, psycholoog en fysiotherapeut allemaal wat anders roepen…

(Bouts en Van der Goes, De Heilige Hippolytus, ca. 1475, Sint-Salvatorskathedraal, Brugge) Image
Read 16 tweets
"Medicine has no answers: there are no diagnostic tests, no drug treatments.. Yet, at the moment it is being acknowledged that #LongCovid is having an impact on the economy, research funding is drying up."…
"Professor @Daltmann10.. says research funding bodies have “bailed out of any interest in following through to #LongCovid answers”. There was interest & money during the pandemic & progress has been made. But.. research funding is drying up before any sustainable breakthrough"
"Research funding for all conditions collapsed during the pandemic when funds were diverted to finding Covid vaccines. Now that the acute phase of the pandemic is over, #LongCovid researchers are having to compete with all the other projects caught in the backlog."
Read 10 tweets
1/ I don’t know which medic needs to hear this, but post-exertional malaise (#PEM) is NOT fatigue.

Short explanatory 🧵

#MedEd #MedTwitter #TeamGP #ME #LongCovid
2/ Patients with #MyalgicEncephalomyelitis and approximately 50% of patients with #LongCovid experience Post-Exertional Malaise (#PEM), also called, Post-Exertional Symptom Exacerbation (#PESE)
3 #PEM or #PESE is a worsening of symptoms after any form - physical, cognitive, emotional - exertion.

#PEM or #PESE is NOT fatigue.
Read 8 tweets
(1/8) If someone had told a few years ago that I will suffer from an illness called "chronic fatigue syndrome", I would never have estimated its severity. I might have thought of people getting tired a little faster.
What do you think of when you hear "fatigue"?
(2/8) The feeling after a long day at work or after exercising, right? #ME(CFS) couldn't be further away from this feeling. The first time you heard "CFS", did you think of a serious illness like end-stage cancer or AIDS? Probably not.
(3/8) However, the level of suffering is similar for the most severely affected people with "#MECFS".
People know the feeling of #fatigue & therefore falsely draw the conclusion of being able to suspect what the illness feels like.
Read 8 tweets
What I mean is that they saw me before. They saw me sick. They saw me moderate, mild, severe. They heard and witness the dozens of symptoms accumulating for years. They saw it. I didn't know what was happening to me. I checked SO MANY OF the mecfs symptoms for YEARS.
doctors even diagnose me orthostatomic hypotension, orthostatic intolerance, then pots. the raynauds, like a lot of these conditions. But they did nothing about it. "It will disappear" Guess what ? It got worse. i even had a test for an illness that causes red blood cells to not
be able to transport the oxygen through the body. like they all saw that something was wrong but it was "nothing"

Of course they kept blaming the fact that I was sick and getting worse on me. "I wasn't doing enough" while I was overworking and probably in crashes all the time.
Read 7 tweets
"Best cost reduction specialist near me:

Schooley Mitchell: Brian Plain & Joe Gifford
225 Cedar Hill St
Suite 200 D117 Marlborough, MA 01752
508-266-5814 #best #cost #reduction #specialist #NEAR  #me #bestcostreductionspecialist"
"Struggling in business? Challenges are natural. Use setbacks to learn & grow. Reassess, seek advice & support.

Success isn't linear, persevere with a positive mindset to achieve your goals. Keep pushing, never give up #onyourdreams."
#StrugglingInBusiness #ChallengesAreNatural
"Feeling overwhelmed by challenges in your business?

Remember setbacks are opportunities to learn and grow.

#Seek advice and support, reassess, and persevere with a positive mindset to achieve your #goals.

Keep pushing, never give up on your dreams!"
Read 4 tweets
"Find me & #mycompany in #Massachusettsspecializinginexpense reduction services for small, medium, & large businesses near Boston & Marlboro:

Schooley Mitchell: Brian Plain & Joe Gifford
225 Cedar Hill St
Suite 200 D117 Marlborough, MA 01752
"#ObtainLowerExpense for Companies near Westborough, Shrewsbury, Northborough, Hudson, & Marlborough:
Schooley Mitchell: Brian Plain & Joe Gifford
225 Cedar Hill St
Suite 200 D117 Marlborough, MA 01752
Read 7 tweets
1/25 When I was a brand new Mum to @JasmineMarwick my Health Visitor told me to remember that I was the expert of my child and that HCP’s were there to guide and help me.

I often think about those words…..
2/25Aug 20 when Jasmine fell unwell & immediately too tired to attend school or walk up a flight of stairs without collapsing no one mentioned or tested for Covid but I knew it wasn’t the blue light on her phone keeping her awake that made her fatigued as suggested by the Doctor
3/25 So we kept going back…….

In Feb 21 when we finally got to see the Paediatrician I didn’t think it was ‘good news’ as they said after they bent her hand back & said that there was nothing neurologically wrong with Jasmine. I wanted answers.
Read 25 tweets
THREAD 📣 Vito Russo's 1988 ACT UP speech "Why We Fight" and it's many parallels to the continuing COVID-19 pandemic currently causing 1k+ deaths p/week + mass disability #LongCovid #ME #POTS A black and white photo of ...
1/ Russo delivered "Why We Fight" during an ACT UP Demonstration at the Department of Health and Human Services, D.C. on October 10, 1988.…
2/ "My family thinks two things about my [AIDS diagnosis.] One, they think I'm going to die, & two, they think that my government is doing absolutely everything in their power to stop that & they're wrong on both counts."…
Read 18 tweets
1/ Chat on Triglyceride rich #LDL

#Me: Why would triglyceride rich LDL particles be more atherogenic than triglyceride poor LDL particles?

#ChatGPT: Triglyceride-rich LDL (low-density lipoprotein) particles are more atherogenic (i.e., more likely to contribute to the……

#Me: Couldn’t it also be possible that triglyceride rich LDL are ultimately the result of metabolic dysfunction and that better explains its association with atherosclerosis?

#ChatGPT: Yes, that is also a possibility. Triglyceride-rich LDL particles are often associated……

#Me: Is it possible that almost the entire amount of atherogenesis associated with high triglyceride rich LDL is due to dysfunctional lipid metabolism and the diseases that result in these profiles rather than the LDL particles themselves?

#ChatGPT: Yes, it is possible that……
Read 4 tweets
Habe zwar kein #PostVac, da ich seit 2014/15 erkrankt bin, unterstütze die Petition von @FeliciaBinger und habe unterschrieben, weil es nicht sein darf, dass man wegen einer Impfung schwer krank alleine gelassen und von Ärzten abgewiesen wird. 1/5
Kann auch nicht mehr ausschliessen, dass nicht frühere Impfungen wegen beruflicher Reisen, nicht auch zu meinem schlechten Zustand beigetragen haben, neben Infektionen und den verhassten #Fluorchinolonen. 2/5
Ich habe jahrelang erfahren, was es bedeutet vom Gesundheitssystem und von Ärzten quasi verachtet zu werden.
Das ist schrecklich.

Diese Argumentation, ob selten oder nicht selten, nützt ausserdem schwer Erkrankten nichts. Im Gegenteil. Sie stigmatisiert weiter. 3/5
Read 5 tweets
Journalism & #ME
and related diseases

There is nothing that can reproduce or describe this nightmare.

By that I don't just mean the torture in the body or the desperate enduring of symptoms, the torture, which a healthy person cannot imagine at all.
All this fighting for treatment, for recognition, this constant humiliation...

...and then these desperate messages that you exchange with other affected people, and I don't mean the ones that you can read here, but that you exchange DIRECTLY,
this daily confrontation with death, every new treatment attempt - Russian Roulette ...while people are discussing out there whether it is appropriate to invest in research etc. or to educate.
Read 5 tweets
What do aluminium sulfate water poisoning, Gulf War Syndrome, World Trade Centre Syndrome, the neurological disease #ME, the post infection disease(s) #LongCovid and poisoning of Iranian school girls have in common?

A British #psychiatrist claiming ‘mass sociogenic illness’!

2/ Does the psychiatrist, Sir Simon Wessely, project his own catastrophic thinking to all ‘grey’ areas in health science transforming them into black and white?

What cannot be explained immediately can be explained through the old ‘hysteria’ hypothesis?…
3/ Thank you @LongCovidAdvoc for this summary on the knighted psychiatrist’s ‘work’!

Despite Wessely repeatedly #blaming media for fueling the affected persons’ ‘mass psychogenic illnesses’ #media has seemingly been satisfied reporting this instead of performing #journalism
Read 7 tweets
The establishment creates this problem by first denying the disease, creating a vacuum that quickly fills up with untested treatments & questionable cures. Then they go about trashing their victims who desperately need relief, and the doctors who are willing to treat.
#BTDT #Lyme
It is both infuriating & heart wrenching to watch this scene play out again, with some of the same establishment players engaging in narrative control. Go to ~48:00 for IDSA creep Paul Auwaerter’s word salad tossed at Congress, thx to my friend @PowerOfNeo…
That they have denied, conflated & confused for DECADES #LymeDisease #ME #mecfs #cfs #fibromyalgia and passed them off as psychiatric, and now are doing the same with #LongCovid, should tell you all you need to know about #PublicHealth’s intentions.
Read 4 tweets
@FuzzyDanSo @DianeB528 @Rasmussen_Poll YOU "dgaf" about what #ScottAdams ACTUALLY said or meant

Preferring to #VirtueSignal your #Woke credentials by joining racist "liberal" #CancelCulture #TwitterMob #DogPile on him

He ACTUALLY said "Choose Love instead of Hate"


Bravery over fear

Thoughtfulness over anger
@FuzzyDanSo @DianeB528 @Rasmussen_Poll #ScottAdams said he lived in a mixed neighbourhood

Next door to a Black man

And he said if you live in a neighbourhood (of any demographic) where up to 50% of the residents don't like you

And too large a proportion are criminals

Move out

And to judge people as individuals!🤦‍♂️
@FuzzyDanSo @DianeB528 @Rasmussen_Poll As I said to another #Woke #VirtueSignalling #ScottAdams #CancelCulture #TwitterMob #DogPile on #Troll

He's often said every local party goes to is very mixed race (& marriage)

Hasn't & didn't mean "Run Away"

He's a comic

It's a joke

Here's the demographics of where he lives
Read 28 tweets
gonna watch zero day 2003 .!!
gonna be live tweeting my reactions lol
-wait bye his parents being so used to his problematic habits that they laugh with him instead of being actually concerned for him(holds head in hands)
-andre's whole family is wild and it explains so much about him
-cal being bad at parties #me
Read 12 tweets
Millions are missing
And the cooper’s wife is too
So we hold our silent vigil
For a girl in a gown too blue
Lost in halls and hospitals
A silver talisman bears true
The diagnosis they doubted
With “Maybe it’s just you?”
“Maybe it’s your fault
Did you ever think it might?
It sure looks like anxiety
Caught in fight or flight
This isn’t an emergency
I’ve no time to spare tonight
For another hypochondriac
Who thinks her Google search is right”
The words echo again
We’ve heard them all before
Generations of us girls
Lost to fable and to lore
Seal wives and fae women
Changelings left by the door
You wouldn’t hear our screaming
So now you’ll hear our roar
Read 15 tweets
Hi everyone!

I am very excited to announce that I have finally completed a massive #ME/CFS & #LongCOVID treatment survey entitled "TREAT ME"‼️🎉🤩

If enough people respond thoughtfully, I’m confident we may push research in the field forward!🏇
TREAT ME covers 150+ medications & supplements. Treatments were selected based on published trials, case reports, other relevant studies, results of earlier surveys I’ve written, direct patient accounts (incl lots of feedback from many of YOU🥰), and my own pharmacist intuition.
The survey has been granted IRB exemption.👍

Furthermore, @OpenMedF will be reviewing a summary of the survey results as they gather info for prospective research studies🤩😍

PLEASE join this effort to investigate #ME & #LongCOVID treatments!
Read 6 tweets



✅ publicatie vandaag!
✅ dit zou wel eens de belangrijkste uitspraak kunnen zijn in de lange geschiedenis van gerechtelijke uitspraken in arbeidsongeschiktheidszaken over ME/CVS

/1 ImageImageImage
✅ wat UWV al lang had moeten en kunnen doen, doet de Centrale Raad nu zelf

✅ de Raad onderwerpt de inzichten van de Stichting Cardiozorg - die UWV stelselmatig verwerpt of negeert - aan het oordeel van (door de Raad terzake kundig geachte) deskundigen…

/2 ImageImage
✅ je kunt van alles vinden van hoe de deskundigen, een internist, een anesthesioloog en een psychiater, de zaak benaderen
✅ maar bottom line is hier het eindresultaat voor deze ME/CVS-patiënt
✅ en mogelijk vele anderen…

/3 ImageImage
Read 9 tweets

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