Discover and read the best of Twitter Threads about #EDS

Most recents (24)

#Hypermobility #CCI #CranioCervicalObstructions #EDS #MEcfs

„Compared to a general population, we found a large (‼️) overrepresentation of hypermobility, signs of IH, and craniocervical obstructions. 1/4
Our hypothesis was strengthened for future studies on the possible relation between ME/CFS symptoms and hypermobility, IH, and craniocervical obstructions in a portion of patients with ME/CFS. 2/4
If our findings are confirmed, new diagnostic and therapeutic approaches to this widespread neurological syndrome should be considered.“ 3/4
Read 4 tweets
Versuche gerade Laptop aufzuräumen, brauche Speicherplatz, finde Brief, den ich im Winter 2017/18 verzweifelt hilfesuchend aus einer Klinik an einen Arzt geschrieben habe-da war ich bereits Jahre krank, VOR der Charité Diagnose (Herbst 2018), #MEcfs &Co. kannte ich nicht.
🧵1/x
Auszüge des Briefes; Symptome:
„- Ohren/Kopf: unverändert laut, sie schwanken, aber wie bisher von laut bis extrem laut, mal pulsierend im Herzklopf- Rhythmus, dann stolpert mein Herz - Töne setzen aus, (ganze Herzaussetzer, beängstigend)
2/x
- Diese eklatante Erschöpfung, es zieht mich vom Körper und Geist (Konzentrationsschwächen, Lücken im Gedächtnis) immer wieder runter und ins Bett, ich fühle mich schwach, als ob mir alles viel zu viel wäre, schon allein ein kurzer Spaziergang ist zu viel für mich,
3/x
Read 10 tweets
Just a reminder:

For those who do not know what #PEM is ( i do not like the word „malaise“, because it’s not malaise - it’s a horror trip) Definition excerpt from the Canadian Consensus Criteria document (2002/2005):
1/x
„2. Post-Exertional Malaise and/or Fatigue
Physical or mental exertion often causes debilitating malaise and/or fatigue, generalized pain,deterioration of cognitive functions,and worsening of other symptoms that may occur immediately (‼️) after activity or (‼️) be delayed (‼️)2/x
Patients experience rapid muscle fatigue and lack endurance. These symptoms are suggestive of a pathophysiology which involves immune system activation,channelopathy with oxidative stress (‼️) & nitric oxide related toxicity (‼️),and/or orthostatic intolerance (‼️)(#OI #POTS) 3/x
Read 11 tweets
Wenn dir das Seltene passiert…

Diese Debatte um selten oder nicht selten ist für schwer Kranke wirklich ein Alptraum. Denn es nützt den Betroffenen nichts, wenn ihre schwere Erkrankung - durch was auch immer ausgelöst - angeblich selten wäre.

#selten
1/x
Beispiel: Abgesehen der #Fluorchinolon Schädigungen habe ich eine instabile HWS #CCI, aber auch eindeutig eine #MEcfs Diagnose (2018). Die mir jüngst auch noch mal bestätigt wurde (2023).

Nun zur HWS (#CCI Diagnose 2020/21): wenn mir da jemand sagt, das ist/sei selten, 2/x
habe ich davon nichts, - überhaupt NICHTS - , denn ich suche ja Hilfe & Behandlung. Wenn man dann noch rausfindet, dass die instabile HWS möglicherweise etwas mit dem Collagenabbau durch die drecks (sorry) #Fluorchinolone, die auch keiner ernst nimmt, zustande gekommen ist,
3/x
Read 7 tweets
Sneak peek at our latest #LongCovid preprint about microclot detection using imaging flow cytometry

By Simone Turner, Jaco Laubscher, @resiapretorius & @dbkell

These are 1st results from the instrument YOU funded by donating to @givewithkernls

#TeamClots

1/n
Grey columns are using brightfield microscopy; black are using Thioflavin T

See the difference in size between #LongCovid & control microclots

There were statistically significant differences in mean size, number & other variables

More in the paper!

2/n Image
Why is this important?
Because flow cytometry is already accessible in clinical settings, unlike fluorescence microscopy which is mainly a research tool.

Big thanks to @gezmedinger @HarryLeeming @fearnley_k @Geraint6Jones @clarejdaly @loscharlos @ShaneyWright @j_b_kennedy 3/n
Read 7 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.
1/x
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,
2/x
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.
3/x
Read 5 tweets
After 6 weeks in hospital with severe gastro issues and needing my PEJ tube resited. They believed I was drug seeking the first 2 1/2 weeks because I was asking for antiemetics that worked. Even though they saw my PEJ wasn't right, they didn't apologise they booked it in before
the media ran my story which they knew about. Being ignored and then suddenly rushed in on a Saturday night? Erm ... not worrying at all!
So they have got 2 psychiatrists involved regardless of I want them in the background or not. This I was told didn't need my consent!
I mentioned I had ME to the consultant and next thing I have 2 pysch, the head quack actually told me the PACE trial wasn't flawed and that pyschs just wanted to help PwME!! He didn't like that I was a campaigner for those of us living with disabilities! He also told me that I
Read 14 tweets
#Putrino #Webinar #SolveMEcfs

#LongCovid ist ein Überbegriff, für alle Erkrankungen, die sich durch eine #Covid Infektion manifestieren. #MEcfs ist eine von vielen! #Putrino hat darauf hingewiesen, dass man nicht auf Biomarker warten muss, um #LongCovid zu diagnostizieren.
1/x
#Putrino hat auch darauf hingewiesen, wie wichtig es ist, jetzt zügig Untergruppen zu benennen, z.b #POTS #SmallFiber #Dysautonomia #ConnectiveTissueDisorder & natürlich viel mehr, um gezielter zu forschen.

Wir haben bei #LongCovid EINEN Auslöser und VIELE Erkrankungen. 2/x
Aber auch bei #LongCovid gibt es Risikofaktoren (nein, keine psychischen, die haben in dem Webinar keine Rolle gespielt #Henningsen), sondern die Frage, was passiert, wenn eine #Covid Infektion bspw auf jemandem trifft, der/die #EDS hat?
3/x
Read 7 tweets
A major part of the stories of #iamthefaceofMAID is that some health conditions are NOT recognized and/or treated in Canada (like MCS and hEDS). BUT!!! They are recognized by #MAID. This is THE disconnect Canada! This is why we need to talk about #IamthefaceofMAID 1/n
If #MAID will recognize conditions, like #MCS and #hEDS, and there are not even specialists in Canada that treat those conditions. Well, we have a problem.
2/n
The #hEDS community struggles every day, thousands of us, for treatment that we know is available but it is not offered in Canada. Often we travel to the US for diagnosis because there are so few specialists in Canada. The surgeries needed are not offered in Canada. 3/n
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
Selten gab es so viele Berichte in Folge rund um #MEcfs
Warum lässt das die Politiker nur so kalt!? @Karl_Lauterbach @starkwatzinger

@martinruecker (🙏) schreibt in der aktuellen @fr:
„Gesundheitsskandal um ME/CFS: Durch alle Raster gefallen“
1/x
„Manche Schwerbetroffene nehmen die Nervenschmerzen wie „Elektroschocks“ wahr: Auf die moderat Erkrankten, die mit dem Unverständnis von Kolleginnen und Partnern leben, wenn sie sich bei der Arbeit eine Auszeit nehmen, nach dem Einkauf zwei Stunden Pause brauchen. 2/x
Und auf die Schwerbetroffenen, von denen manche die Nervenschmerzen wie „Elektroschocks“ wahrnehmen und deren Herzfrequenz und Blutdruck ins Unermessliche steigen, wenn sie nur versuchen, aufzustehen. Die im schlimmsten Fall in dunklen Zimmern leben, weil sie das Licht nicht 3/x
Read 7 tweets
To those intent on psychologising #LongCovid & #MECFS because ‘there is no biomarker’- let me tell you something as a senior Dr. Many diseases don’t have biomarkers & diagnosis is clinical. Take asthma for example. Symptoms vary between patients. 1/n
Many patients have abnormal exhaled nitric oxide (FeNO) & histamine challenge tests- some don’t. Yet if the patient’s symptoms & signs fit with asthma, we have no hesitation in making the diagnosis. 2/n
There is the well-known example of multiple sclerosis. Many deemed it psychogenic because there was no lab or radiology test that was diagnostic. Until of course the MR scan was invented. 3/n
Read 8 tweets
Lieber @Karl_Lauterbach!
Da Sie leider im #KaDeWe waren, - wo war eigentlich @starkwatzinger ? - 2 Min #MEcfs Realität & Politik!

#MEcfsImBundestag
#Auslöser Infektionen - Impfungen - Fluorchinolone - Unfälle uvm - Komorbiditäten #SmallFiber #POTS uvm
#WirfordernForschung 1/2
Weil einige Anfragen kamen:
das Video enthält Ausschnitte aus dem 3sat Kulturzeit Beitrag (Oktober 2022 über #MEcfs @KarenBreece Wien’s Anatomy), plus Ausschnitte Debatte #MEcfsImBundesTag
Hier der Link zum Beitrag (Autoren D.Schmidt-Langels/S. Dahrendorf)
und p.s.
Fotos sind von Silke Reents und @MariaWagnerBER
Danke.
Read 3 tweets
Tag 3 nach #MEcfsImBundestag

Ich gehöre zu denjenigen, die extrem von den sogenannten #Komorbiditäten betroffen sind, die - das darf bitte nicht vergessen werden - nicht irgendwelche belanglosen Begleiterkrankungen sind, sondern hochgradig quälend. 1/x
Dazu gehören #posturalesTachykardieSyndrom (z.B abnorme Herzraten, Atemnot usw.), die #SmallFiber Neuropathie (z.b ekelhafte Nervenschmerzen, Brennen, Sehstörungen, Gehirn in Flammen, Pochen am ganzen Körper usw.) und das MastzellAktivierungssyndrom. #Dysautonomia 2/x
Allein #MCAS kann zig ekelhafte chronische Symptome hervorrufen.

Alle diese sogenannten #Komorbiditäten können vorkommen sowohl bei #MEcfs #LongCovid als auch #PostVac und - das ist mir ja immer wichtig - in hohem Masse auch bei der Schädigung durch #Fluorchinolone. 3/X
Read 6 tweets
"Covid-19 and Ehlers-Danlos syndrome: the dangers of the Spike protein of SARS-CoV-2"

Looks like there IS increased risk for #hEDS and #EDS and not just from Covid itself but also from the mRNA vaccine.

docs.google.com/document/d/1cn…

@remissionbiome #MECFS #LongCovid
@remissionbiome 1. Jean-Marc Sabatier – Although EDS is a rare genetic pathology, with an overall incidence of around 1 in 5,000 people (highly variable incidence depending on the type of EDS), I have observed that a very high number of people suffering from the most severe forms of long Covid
@remissionbiome 2. (post-infection or post-vaccination sequelae) had EDS. As mentioned earlier, EDS is systemic and directly linked to abnormalities in the connective tissue of genetic origin (production of collagen). It seems to me quite possible that the deficiency in proteins of
Read 9 tweets
@purbini @beinsports_FR La visibilité = Match accessible au plus grand nombre, et donc en clair, et au prix le plus bas!

Vous êtes vraiment tous à coté de la plaque les journaleux tellement corporatistes, bourgeois, pistonnés/cooptés.. opportunistes.
Tu cherches du boulot chez beinTV ?!
@purbini @beinsports_FR C'est comme les gars de l'#EDS #EDG réservés, à l'époque sur les intentions de #PrimeVideo (comparé à "l'Historique" Canal+ & gentil beinTV ) pour la #L1.
@purbini @beinsports_FR Ils étaient encore traumatisés d'avoir léché le cul au milliard annuel d'imposture de MediaPro alors que nous "sale populace/grand public" avions vu l'arnaque arriver....
Mais là aussi évidemment, "après" tous ces journaleux retournaient leur veste...
Read 27 tweets
When I got #LongCovid, it felt like I began to fall apart. But that was not only figuratively, I really was, literally.
Now I know the status of my neck- and spine. And it’s very seriously damaged…1/
#EDS #MEspine #MECFS #hypermobility
Following imaging & evaluation at @Clinica_Teknon I have been diagnosed with -

1) CCI (Cranio-Cervical Instability) and Cranial Settling.
This means that my skull, C0, is sinking down, pressing on my spine and compressing my brainstem.
2) AAD & AAI (Atlanto-Axial Dislocation and Subluxation).
This means that my C1 & C2 vertebrae are misaligned and dislocated to the left.
Read 13 tweets
@Xrpihype @abocanal @Nabil_djellit Non juste des critères racialistes de bourgeois qui veulent des "crève la faim".
Et pour eux, un petit blanc comme eux (recruteurs), même de cité ne peut pas être un "crève la faim"!
Comme ça depuis les années 90!
@Xrpihype @abocanal @Nabil_djellit TOUS les gars SCOLARISES (et n'ayant pas la mémoire courte ou selective) en Quartier/Cité a alors fait au collège des "journées de detection" & connait alors ces critères racialistes/racistes de merde
@Xrpihype @abocanal @Nabil_djellit Car pour les "recruteurs", ex footeux #bourgeois d'hypercentre-ville ou de village bourgeois, les "crève la faim" ne vivent donc que en "quartiers/Cités", & jamais "blancs" car eux même "blancs" ne "faisaient du foot que pour se prendre une cuite à la fin" alors......
Read 12 tweets
Fun astronaut facts for #mespine, #mecfs and #eds peeps:
1) When astronauts go into space, they gain 2 inches height because their SPINES expand in microgravity. adventhealth.com/practices/adve….
2) Herpes reactivation is extremely common in astronauts. Herpes titres INCREASE the more time spent in space/on the space station. However, CD4+, CD8+, T-cells and NK cells all drop. hhv-6foundation.org/latest-scienti…
Read 10 tweets
1st, what a sloppy claim. The hypothesis that intracellular folate deficiency can cause symptomatic elements of #EDS is not new, but I think it's wrong. The #MTHFR polymorphism is SO common and we've gone down the MTHFR rabbit hole before. /1
You hypothesis is that decreased activation of decorin causes structural differences in collagen making it loose enough to cause hypermobility. I find it interesting that other, peer-reviewed studies say that "decorin promot[es] inflammatory activity" science.org/doi/abs/10.112… /2
suggesting that a decrease in decorin could actually be protective in disease associated with an inflammatory state, such as #EhlersDanlos. That is not to say that treating patients with the MTHFR polymorphism with methylfolate couldn't cause improvement, but /3
Read 20 tweets
One of the things I struggle with when I'm having a fatigue flare up is the impact it has on my #EDS symptoms: less movement/strengthening = more pain & injuries.

I've been having a hard time not getting frustrated by this, so I wrote a little "Agony" Aunt letter to @jdibon. 🧵
I wanted to know how can I balance the substantial change in capacity and respecting the extra rest and time in bed that my body needs with the things I know I need to do to manage my EDS issues.
I asked what advice would she'd give to someone in a similar position? How can we start thinking about the safest ways to move our bodies through increased times of physical stress and fatigue? What are the benefits of finding ways to keep moving in these safe ways?
Read 10 tweets
#MEcfs – Chronic Fatigue Syndrom. Was ist das? Wie wird es behandelt? — Ein leicht verständlicher 🧵 von Neurona, der kleinen Neurone, über die schlimmste Form von #LongCOVID.

(Bildbeschreibung als Text, Credits am Ende) Image
„Hallo! Ich bin Neurona! Ich möchte dir erzählen, was wir heute über ME/CFS wissen. Du & deine Angehörigen können dann besser verstehen, welche Ursachen für ME/CFS wir heute vermuten & wie wir es behandeln. Image
ME steht für Myalgische
Enzephalomyelitis. Enzephalomyelitis bedeutet
Entzündung des Gehirns & des Rückenmarks. Mark, altgriechisch muelos. Gehirn, altgriechisch enképhalos. Myalgie bedeutet
Muskelschmerz. CFS steht für
Chronic Fatigue Syndrome oder chron. Erschöpfungssyndrom. Image
Read 21 tweets
I have #IIH, #EDS and #PoTS. I have struggled to find information about managing all three so here's a thread sharing my experience 🧵

(Disclaimer: I'm not a doctor, this is intended for informational purposes only)
If you have a new headache that doesn't go away after a few weeks, visual disturbance, dizziness, tinnitus, pressure feeling in your head, whooshing in your ears. It might be a good idea to go get checked over by your doctor...
These were all my signs of increased pressure in my brain. If your doctor, like mine, just tells you you're stressed (insert medical gaslighting here) you can also go for a vision test with your optician as they can also look for signs of increased pressure.
Read 16 tweets
📺🧵Key takeaways from @IndependentSage
@DrGrahamLJ on the long term risks of #SARSCoV2:
🔹Covid is a blood vessel disease
🔹1/2 billion virus in 1tsp of saliva
🔹Importance of mouth hygiene
🔹Viral load in mouth predictor of acute illness
Clear explanation by @Sunny_Rae1 of #SARSCoV2 as:
🔹a blood vessel disease
🔹 pathophysiology of microclots & endothelial damage
🔹present in #LongCovid & a lesser degree in 'recovered' patients
Summary by @Sunny_Rae1
Read 5 tweets

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