Discover and read the best of Twitter Threads about #MeCFS

Most recents (24)

»Ich habe [#MECFS] zum ersten Mal 1988 bei Patienten in Texas gesehen. Damals wusste man so gut wie gar nichts. Seitdem ist es nicht gelungen, eine wirklich überzeugende Therapie zu entwickeln«, erklärt [@Karl_Lauterbach].
»Man darf den Aufwand, [bei #MECFS] zu Ergebnissen zu kommen, nicht unterschätzen. Es gibt zu wenig Wissen über die Art und Weise, wie das entsteht.«

So ebenfalls @Karl_Lauterbach.

Das ist ja alles richtig... ABER:
Das wird sich NIE ändern, wenn nicht massiv in #MECFS investiert wird!

1⃣ Aufklärungskampagne
2⃣ Massive Forschungsprogramme
3⃣ Versorgungsstrukturen

So am 14.02. im Bundestag erläutert, @Karl_Lauterbach wäre auch eingeladen gewesen. #SIGNforMECFS

➡️signformecfs.de/?page_id=730 Image
Read 4 tweets
@sunsopeningband Great question! Our data also supports that the majority of folks we see with LC have both metabolic and autonomic components (we see kind of a distribution of 15-20% of autonomic or metabolic alone, and 60-70% of a mix of both). I think the main point is that you can have 1/
@sunsopeningband both processes at play, but I don't have evidence at this stage that the processes are linked, they're likely separate: you have metabolic PEM AND autonomic PEM and one doesn't influence the other. For autonomic we take careful physical and physiological measurement at each 2/
@sunsopeningband session in order to measure the extent to which someone's ANS is activated on the day, as well as to track progress (10m stand, HRV (SDNN), HR/BP changes through positional transitions), for metabolic it is very tough (we're going to release some research on this ASAP), but 3/
Read 7 tweets
Ok someone said it before me! What about Long Monkeypox. Didn't know if it was in good taste to talk about it so soon. But we learnt the hard way to consider morbidity, not only mortality

Anyway, #monkeypox has known long-term health effects and complications as per @WHO

🧵
Reported complications of historical cases of #monkeypox | i.e. before current cases | include secondary infections, bronchpneumonia, sespis, encephalitis, and infection of the cornea, with resulting loss of vision

who.int/news-room/fact….
Asymptomatic (subclinical | "silent") infection is also noted to occur. #monkeypox as a symptomatic disease can be prolonged in itself, with symptoms and signs reported to last for 2 to 4 weeks according to official guidelines | a bit of deja vu here with the early covid reports!
Read 7 tweets
Please read our latest review by @jan_choutka et al. on “Unexplained post-acute infection syndromes”.

What a privilege to work with Jan Choutka, who is an #MECFS patient, expert and advocate. Grateful to @mhornig on her expertise/insights 🙏🏼 (1/)

nature.com/articles/s4159…
With millions of #longCOVID patients, it is becoming better known that even a mild infection can lead to longterm debilitating health problems. SARS-CoV-2 joins the long list of other pathogens that cause post-acute infection syndrome (PAIS). (2/) Image
What are some common and distinct symptoms associated with PAIS? Strikingly, there are a number of shared symptoms such as excertion intolerance, fatigue, pain, neurological symptoms..etc. Others are more unique to the pathogen that triggered the disease. (3/) Image
Read 8 tweets
🧵 on repeat infections, negative lateral flow & #PCR tests, and the use of #COVID19 antibody tests. An n=1 experience #OmicronVariant #LongCovid #MedTwitter #TeamGP #psychtwitter #LongCovidKids #COVIDisAirborne #CovidIsNotOver 1/n
I had acute #COViD19 in Nov 2020, PCR +ve. Developed #LongCovid a month after. Had one dose #Pfizer Feb ‘21 which gave me new symptoms. Out of interest I had my anti-spike antibodies done May ‘21- they were above the upper limit the assay could measure 2/n
With the passage of time my antibodies dwindled. I had them rechecked in Dec 2021- both nucleocapsid & spike antibodies were below the protective limit. Therefore I had no protective antibodies. 3/n
Read 18 tweets
Wir alle machen Fehler, aber nur wenn man sie eingesteht, kann man daraus lernen. Tut man es sogar öffentlich, können andere lernen, bevor sie den Fehler selbst machen.

Deswegen von mir herzlichen Dank für diesen Bericht aus erster Hand über das #MEcfsStigma. 👏
#MECFS
"Stigma" ist ein so abstrakter Begriff - aber wenn man solche Geschichten liest, wird es verständlicher, was das #MEcfsStigma für Betroffene bedeutet.

Beklemmend ist für mich immer wieder, welche Autoritäten diese Vorurteile über #MECFS verbreiten. Hier der erfahrenere Kollege.
Aber auch dessen Meinung fiel ja nicht vom Himmel:
Im Ärzteblatt war schon in Überschriften zu lesen, dass #MECFS-Betroffene "zum Teil schwierige Patienten" wären. In der NKLM 2.0 ist heute immer noch von "Problempatienten" die Rede.
Read 5 tweets
Many with #longCovid are finding it difficult to describe what they are feeling. Those of us in the #MECFS and #ChronicLymeDisease #EDS community have had longer to think about and put these experiences into words…
Post-viral illness wreaks havoc on multiple systems within your body which of course are interconnected. The way I describe it is that you are losing your body’s life force — this is different from your soul. And it’s not just energy. It’s your actual life’s force.
In the beginning when you first get sick, you can still feel the healthy parts of you versus the sick parts — kind of like layers of an onion.

But eventually the sick parts seep into the healthy parts and you can no longer distinguish between the two.
Read 18 tweets
Die Bundesregierung hat auf die kleine Anfrage der @cducsubt-Fraktion zu #MECFS geantwortet.

📄(pdf)➡️dserver.bundestag.de/btd/20/017/200…

Inhaltlich ist die Antwort mMn eine herbe Enttäuschung - obwohl meine Erwartungen ohnehin niedrig waren. Alte Textbausteine & Desinformation wie gehabt.
Einige der kritikwürdigen Punkte der Antwort habe ich auf Facebook kommentiert:
➡️facebook.com/signformecfs/p…

Da es sich in weiten Teilen um eine Wiederholung alter Positionen handelt, sei auch auf unsere Stellungnahme zur #SIGNforMECFS-Anhörung verwiesen:
➡️signformecfs.de/?page_id=730#s…
Bemerkenswert ist der Verweis auf den med. Lernzielkatalog NKLM 2.0 (nklm.de).

Dort heißt es zu #MECFS u.a.:
"Problempatienten", Therapie: GET und CBT, #MECFS sei "umstritten".

#MedTwitter, wie soll es jemals besser werden, wenn DAS die "Lernziele" sind? 😵‍💫🤪
Read 4 tweets
#chronicillness Twitter to doctor advocates
-you’re only speaking out because you’re sick yourself
-now you know what it’s like (implication- all of us neglected & psychologised patients before. NOT true- some of us just did our best within a system stacked against us)
1/n
-you need to mention ‘x’ disease as well. (We’re learning as fast as we can. Remember we are sick too. Some of us are bed-bound lying in darkened rooms. You know how much energy it takes to speak up)
2/n
-don’t dabble in areas you know nothing about. (In my case #Palestine. Being a chronic illness advocate doesn’t make me a one-trick pony. I’ve visited the West Bank & witnessed firsthand the horrors of #IsraeliApartheid. So I will speak up- I’m not here for anyone’s comfort
3/n
Read 5 tweets
Early on we observed a period of improvement lasting several months followed by a 'second dip' into harder onset.

Even I, with really mild symptoms, had a noticeable dip around mo 3-4 after 'recovery'.

If you did too, it's not b/c you did anything wrong. #LongCOVID (1/3)
There are many possible reasons for this (including a return to semi-normal immune function!) but it is a pattern seen in many with #LongCOVID. And, looking back, in those with #MECFS. (2/3)
(Not claiming Serpina feels this way, but using their story as an example only!) (3/3)
Read 4 tweets
good morning! cases are surging again, which means new #LongCovid patients will soon be emerging (trust me, I've seen this episode before). It seems like a good time to recap some resources for media covering Long COVID...
1) The source list: @betsyladyzhets and I put together a source list w/ #LongCovid experts + patients (and patients who are experts, ofc) longcovidsourcelist.notion.site/longcovidsourc…

this tweet has info on how to submit yourself as a source for the list (which we update):
2) The comprehensive guide: I spent several months last summer working on a guide for press covering #LongCovid for @itsbodypolitic. I spoke with veteran health journalists and patient-advocates to better understand how media coverage can improve: drive.google.com/file/d/1_H4Yd-…
Read 7 tweets
Ich leide seit über 800 Tagen, d.h. seit über 2 Jahren und 2 Monaten, unter #LongCovid. Mild. Kurzatmigkeit, reduzierte Lungenfunktion, Tachykardie, Belastungsintoleranz & kognitive Dysfunktion sind Hauptbeschwerden. #NichtGenesen 1/
Ich kann keinen Sport mehr machen. Habe meinen Job verloren weil ich die kognitive Leistung nicht mehr bringen kann. Mit Betablockern, Antihistamin, Melatonin komme ich durch die Nacht und den Tag. Ich inhaliere Kortikosteroide, aber spüre keinen Nutzen. 2/
Vor der Erkrankung war ich topfit. Habe 100% in der Kommunikation gearbeitet, was ich lieb(t)e. Ich habe 3-4 Mal pro Woche auf meine Marathons trainiert. Ich bin #NichtGenesen. Mein Gesundheitszustand ist bei ca. 50%, langsam stetig abnehmend. Mild? 3/
Read 10 tweets
Horror stories from the #LongCovid rehab!

Max, 27 years old

Symptoms:
Fatigue, PEM, sleep disorders, brain fog ...

Therapy: Swimming and long walks

Result: Bedridden and no longer able to use his smartphone.

#LongCovid #MECFS
Bettina, 35 years old

Symptoms: Fatigue, PEM, muscle twitching, headache.

Therapy: Walking with weights on her feet

Result: Housbound and unable to care for her kids

#LongCovid #MECFS
Rob, 24 years old

Symptoms: Muscle pain, fatigue, PEM, sleep disturbances

Therapy: Running on a treadmill

Result: Beadbound and unable to communicate via smartphone.

#LongCovid #MECFS
Read 4 tweets
A thread for #MECFS & related research papers from w/c 9th May 2022.

Links will be to our forum discussion threads, where abstracts, links to paper, analysis and discussion can be found. Please note that inclusion in this list does not equal recommendation.

1/4
The Updated NICE Guidance Exposed the Serious Flaws in CBT and Graded Exercise Therapy Trials for ME/CFS by Vink & Vink-Niese.

s4me.info/threads/the-up…

2/4
"The Pathobiology of ME/CFS: The Case for Neuroglial Failure" by Renz-Polster et al

s4me.info/threads/the-pa…

3/4
Read 5 tweets
Pleased to share ⁦@FarazFallahi⁩’s #MECFS video this time with English captions featuring some of my favourite German & Austrian names #LongCovid #MyalgicEncephalomyelitis #pwME #MedTwitter #MedEd #TeamGP #psychtwitter. A sobering watch.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severe neuroimmunological disease that mainly occurs after infections (including COVID-19).

Please watch, like and share the video - help us to finally get attention!
Unfortunately, there are no therapies, hardly any research funds and no significant care structure. Due to COVID19 the number of sick people is increasing drastically.

Those affected demand:
Read 6 tweets
By far, the most important events in the lifecourse of my daughter's #MECFS were two massive relapse events that severely degraded her baseline level of functioning. Hoping to crowdsource ideas from #Medtwitter and #NEISVoid on this phenomenon and how to study it effectively. 1/
A better understanding of exactly what happens during these events would help us make faster progress in understanding #MECFS and perhaps #LongCOVID. Yet this phenomenon remains dramatically understudied. We need to change this! 2/
The field lacks clear and uniform terminology for describing these events, which is one of many obstacles to studying them. For now I have settled on the term "massive relapse event" for these reasons: 3/
Read 27 tweets
Reinfection update #longcovid at 20 months, now #mecfs. Breathing significantly worse on day 7. Zero appetite, drinking 3x as much, so weak I went from 90% bedbound to 100%. Cold to my bones (parents wearing shorts). Doc requested paramedics come check me out. They said… 1/
“Hospital is a bad place to be right now. You’ll get worse if we take you in for checks and you wait ten hours for a bed. We advise ppl to ride it out at home if they can.” My vitals were ok - no crackle or wheeze, just shallow & laboured breathing. 2/
Relieved not to be admitted. Deeply concerned about the state of hospitals. Feels like it’s been that way for 2 years. Am well enough to tweet right now so must be better than yday. Omicron has really seriously hit me. Don’t get it; don’t get sick enough to need hospital care./3
Read 5 tweets
👉#LongCovid

"Vamos todos a fingir que estamos sorprendidos, para justificar malas decisiones políticas. No se podía intuir, como que lo sabemos desde hace 2 años.

Long-covid afecta al 10-30% de las personas después de la infección.
👉Artículo:" Expertos perplejos por número de personas que tienen #LongCovid

👉"Jim Heath, lidera la iniciativa RECOVER del Instituto Nacional de Salud (NIH), que analiza la condición posterior al COVID-19 y formas potenciales de prevenirlo y tratarlo.
👉"Según Heath, una estimación del 15 al 20 por ciento de los sobrevivientes de coronavirus que experimentaron COVID-19 prolongado después de seis meses fue una "suposición fundamentada" razonable y agregó que había evidencia para respaldar esa tasa de ocurrencia.
Read 5 tweets
🧵 ⭐️ NICE chronic pain guidance summary ⭐️ The word ‘psychological is used 27 times. ‘CBT’ 17 times. Recommends ACT- ‘acceptance and commitment therapy.’ 1/
Management = exercise. Psychology. Acupuncture. Anti-depressant. However in the ‘don’t’ list section it says don’t even offer paracetamol. 2/
However the first section of the guideline says ‘Offer a person-centred assessment to those presenting with chronic pain’ 3/
Read 10 tweets
What I have learned since being unwell myself has destroyed any faith I had in my profession’s leaders. I used to think that deep down most senior clinicians acted because they had the best interests of the patient, their colleagues & society at heart. That illusion is gone. 1/n
Be it the treatment of those with #MECFS #LongCovid #Fibromyalgia #POTS #MCAS #EDS #HSD #PansPandas #Lyme #FQtoxicity #vaccineinjuries & other so-called invisible illnesses; 2/n
the refusal of senior medics to stand up & protect colleagues, the public & schoolchildren from airborne spread of #SARSCoV2 as they are too afraid to displease those in the ivory towers of infection control, @UKHSA & @NHSE management & @UKgovcomms; 3/n
Read 7 tweets
Today's 🧵 is about autonomically-led post-exertional symptom exacerbation (PESE) in #LongCovid, #MECFS and other infection-associated chronic illnesses. This form of PESE is different to metabolically-led PESE, but it is also possible to have both occurring at the same time (1/)
Autonomic dysfunction happens a lot in #LongCovid and #MECFS and can be highly debilitating. The autonomic nervous system (ANS) manages a lot of intricate body physiology. For instance, every time you change position from laying down to sitting up, your ANS makes changes to (2/)
your blood pressure and heart rate to make sure that blood can travel all the places it needs to (e.g. the brain) despite the new position. The ANS does 1000 little ingenious, complex and entirely automatic functions like this on the daily. As such, when people experience (3/)
Read 18 tweets
My desperate cry for help. Twitter, please do your thing🤍

Dear @elonmusk (1/6) Image
Dear @elonmusk (2/6) Image
Dear @elonmusk (3/6) Image
Read 8 tweets
🧵 ⭐️ let’s talk about exercise, post-exertional malaise and #MECFS ⭐️ Have you ever told your fatigued patient they are deconditioned and need to exercise? There have been some very eloquent studies that demonstrate why patients have been saying exercise makes them worse..1/
The 2-day cardiopulmonary exercise test (or CPET). Various measurements are taken while the patient is on a treadmill or stationary bike. What’s really interesting is the ‘2 day’ part. Most people if you do this test the day 2 results are the same or better….2/
When you do the 2 day CPET test in ME/CFS patients they are the same as controls on day 1 but WORSE on day 2. This is not normal physiology! Even patients with severe heart failure can produce the same results on day 2 of testing 3/
Read 14 tweets
1/6 #MEAwarenessDay #MECFS

Es kam einmal ein Neupatient
zu einem Arzt, der alles kennt.
Zumindest wähnt der sich ein Gott in Weiß,
sein langes Studium sei der Beweis.
Auch hat er einen Kurs gemacht
für psych‘somatischen Verdacht.
2/6 #MECFS

„Herr Doktor, mir tut alles weh,
vom Kopf bis hin zum großen Zeh.
Die Muskeln schwächeln, brennen, schmerzen,
Es rast und stolpert mir im Herzen.
Im Kopfe dröhnt‘s, mir schwindelt sehr,
ich hab‘ null Energien mehr.“
3/6 #MECFS

„Das kann doch alles gar nicht sein,
die Werte des Labors sind fein.“

„Mein Denken stochert wie im Nebel.
Ja früher, da zitiert‘ ich Hegel!
Doch heute muss ich mich oft fragen,
… hm, was wollte ich jetzt sagen?“
Read 6 tweets

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