Discover and read the best of Twitter Threads about #pem

Most recents (24)

Starting off #AAP2021 w #PEM #SOMHEI joint session to hear @DrTiffJohnson’s talk on racism and child health - can’t screenshot anything but will try to live tweet!
Some background info: Dr. Johnson’s prior talk @ChildrensNatl Grand Rounds childrensnational.org/news-and-event… #AAP2021
More resources about disparities especially in #PEM
onlinelibrary.wiley.com/doi/full/10.11…

Shoutout to @ElysePortillo and @monikagoyal123 among others in this special issue
Read 11 tweets
This slide shared by @scotgovhealth in a webinar for #teamGP on #LongCovid today.
#MedTwitter #MedEd we need to get these terms away from LC:

Tiredness
Deconditioning
Anxiety
Functional

These may come in after associated conditions are excluded. 1/
Fatigue👏🏻doesn't👏🏻equal👏🏻"tiredness"

Anxiety👏🏻doesn't👏🏻cause👏🏻#longcovid

PEM👏🏻needs👏🏻to👏🏻be👏🏻excluded👏🏻before👏🏻we👏🏻mention👏🏻deconditioning

And don't get me started on functional!!!! 2/
There is increasing evidence of microendothelial damage leading to #longcovid

O2 sats dropping, microemboli, dysautonomia are not functional disorders
medicalxpress.com/news/2021-10-e…

3/
Read 7 tweets
Nun also ein erster Einblick in dieses psychologische "Fachbuch" aus dem Jahr 2005. Selbstredend wird dort ein sog. kognitiv-behaviorales Modell unterstellt, das mit aktuellen biomedizinischen Erkenntnissen über #MECFS unvereinbar ist.
Die mittlerweile weltweit als Kardinalsymptom von #MECFS anerkannte und auch objektivierbare #PEM ("Post-Exertional Malaise") wird in dem Werk zwar nicht beim Namen genannt, aber immerhin als ganz typisches Symptom von Betroffenen umschrieben.
Als "evidenzbasierte" Therapie des "CFS" wird "allmählicher Aktivitätsaufbau (AAA)" empfohlen - also die altbekannte #GET (graded exercise therapy).

Die Autoren sehen dabei #PEM lediglich als Konsequenz "persistierender maladaptiver Bewältigungsmuster" der Betroffenen an.
Read 24 tweets
Just found this on Google Scholar. Will look thru on better brain day:

OSF Preprints | Broken Connections: The Evidence for Neuroglial Failure in ME/CFS #MECFS #pwME osf.io/ef3n4
"...identified the CNS neuroglia - microglia & astroglia - as the one functional unit in the human body which may best explain all & any of the clinical and pathological features, dysfunctions and observations described for ME/CFS...this points to neuroinflammation..." /2
"Of note, this is not a unifying theory about the etiology, the triggers or the inception process of ME/CFS. This approach is focused solely on finding the final pathogenetic pathway(s) which may underlie the clinical manifestations of ME/CFS." /3
Read 63 tweets
#longcovid recovery
A thread.
Whilst I write this I'm painfully aware of so many people with #longcovid who are far from recovery but at the same time I want to give hope.
Last September I lost my job as I was too ill to work due to #LongCovid
I was breathless, tachycardic, full of brain fog, and had tinnitus and myalgia. I had pyrexia daily and awful post exertional malaise that would hit every time I tried to do anything.
I went onto discover many of my symptoms were related to the #PoTS I had developed as a consequence of my #covid19 infection.
I started medication and luckily it had a good effect on me, allowing me to slowly build myself up to go back to work as a locum GP.
Read 13 tweets
Draadje. Pleidooi voor het luisteren naar de patiënt, nav ervaringsverhaal.
Toen ik vroeg in de eerste golf ziek werd (ik was toen 32 jaar en voorheen fit en gezond) dacht men dat ik snel beter zou zijn. covid zou een longvirus zijn en enkel gevaarlijk voor kwetsbaren en ouderen.
2 april kwam ik op de spoedeisende hulp terecht met een hoge hartslag en benauwdheid. Ik was toen al zes weken ziek. Ik werd naar huis gestuurd met een puffer en kreeg te horen dat ik snel beter zou zijn. Zo lang ziek op mijn leeftijd, daar hadden ze nog nooit van gehoord.
De hartkloppingen en hoge hartslag hielden aan, samen met talloze andere symptomen zoals tintelingen, extreme hoofdpijn, een opgejaagd gevoel en spierspasmes. De cardioloog concludeerde in mei dat ik gezond was. Ze had nog nooit van m’n klachten gehoord. Ik zou snel beter worden.
Read 27 tweets
I was harmed by #CBT/GET not bc I was forced into the torture (aka #MEcfs) Clinics but bc lack of education meant #NHS Dx me w/ Depression as cause of #PEM, #BrainFog & debilitating #Fatigue and was then traumatised by #Psychiatrists who told me I was to blame 1/
I was a happy, successful, yoga pant wearing, posh gym attending, green juice drinking, extroverted Californian forced to undergo #CBT w/ stern British #Psychiatrists. I wasn’t Depressed until I met them, temporarily saved by acceptance into @BerkeleyHaas MBS program 2/
MBA life is hectic, exhilarating & inspiring. In remittance, I love people & Academics so got involved in everything. For 2nd year, I got a position teaching undergrad Business. An income meant I moved into nicer apartment, flew business clothes to NYC for Reuters internship 3/
Read 20 tweets
Draadje over #LongCovid. Voordat ik in de eerste golf corona opliep had ik een geweldig leven. Ik was 32 jaar, gezond en werkte fulltime als museum conservator. Ik sportte meermaals per week en ik was gelukkig. Nu verlaat ik al 1,5 jaar amper het huis en kan ik niet meer werken.
Ik ben oa zo slecht geworden doordat ik het eerste driekwart jaar steeds maar weer probeerde, enorm over mijn grenzen gejaagd werd door fysio's, psychosomatische fysio’s en artsen die het niet serieus namen. Nu heb de diagnoses #POTS en #ME/CVS.
#Longcovid is geen grap, het is ivaliderend en dit moet uiterst serieus genomen worden. Hoewel bewustwording traag toeneemt, blijft hulp en kennis van de aandoening nog ver onder de maat. Nog te veel fysio’s houden geen rekening met #PEM.
Read 8 tweets
@iqwig @ME_Inactivist @Robert83563198 Zunächst vielen Dank für Ihre ausführliche Reaktion.

Inhaltlich lässt mich diese leider irritiert zurück. Die o.g. Gesundheitsinformation war einseitig, hat #MECFS bagatellisiert und schädliche Empfehlungen ausgesprochen. Das hat mir selbst und vielen anderen sehr geschadet.
@iqwig @ME_Inactivist @Robert83563198 Dass Sie dazu kein Wort des Bedauerns äußern wollen, ist Stilfrage – nehme ich zur Kenntnis und muss ich so hinnehmen.

Dass Sie aber andeuten, der Bericht habe der damaligen „Evidenz“ entsprochen, ist einfach unzutreffend und dem muss ich widersprechen.
@iqwig @ME_Inactivist @Robert83563198 Beispiel: Der erste Absatz der Information endet mit einem #MECFS krass verharmlosenden Satz.

„Wirklich schwerwiegende Symptome sind jedoch nicht sehr häufig.“

Was soll denn die Evidenzgrundlage hierfür gewesen sein?
Read 9 tweets
#LongCOVIDPhysio formed in November 2020 and as a group we’ve achieved a lot in this time. So what have we been doing in the context of #LongCOVID? A thread 🧵 longcovid.physio
Firstly we provide loads of free resources with huge diversity of topics, including what is “#LongCOVIDlongcovid.physio/longcovid
Read 19 tweets
#PostCovid #LongCovid #PEM
Ich leide seit 5 Jahren an MECFS. Ich weiß nicht, wie sich die Lungenbeschwerden bei #LongCovid-Patienten anfühlen, aber den Rest kenne ich. Fatigue zerstört Leben und kann durch seine Besonderheiten auch Familien zerstören.
Fatigue-Patienten wie ich genießen keine Aufmerksamkeit. Da ist der Grund, weshalb viele MECFA-Erkrankte Jahre bis zur Diagnose brauchen. Ärzte negieren die Erkrankung und schieben Erkrankte in die Psychiatrien ab.
Das gilt auch für andere Erschöpfungserkrankungen. Weil die ärztliche Ausbildung in Bezug auf diese Erkrankungen schlecht ist, müssen Betroffene immer wieder vor Gericht. Da die Unterstützung fehlt, entlasten sich die Krankenkassen durch Abschieben in die Sozialversicherung und
Read 8 tweets
So sieht es übrigens aus, wenn man an #MECFS - hierzulande leider auch als sog. "chronisches Erschöpfungssyndrom" bekannt - erkrankt ist.

Es gibt keine Therapie. Verbleibende Lebensqualität: Null. Dauer: unbegrenzt.

#MECFS ist auch Folgeerkrankung von #Covid19.
#LebenRetten
#MECFS ist als Folge von Virusinfektionen seit Ewigkeiten dokumentiert. Es handelt sich um eine häufige chronische Erkrankung. Die damit verbundenen Einschränkungen der HrQoL gehen im Schnitt über die fast aller Krankheiten hinaus.
Wir sind mitten in einer Pandemie, die viele neue #MECFS-Fälle hervorbringen wird. Es wäre so wichtig, auch diesen Aspekt dabei zu berücksichtigen.

Aber in Deutschland wird von fast allen so getan, als gäbe es das Problem nicht.
Read 7 tweets
Danke für die Warnung vor #MECFS.

Und mein allerherzlichster DANK für den Wechsel der Terminologie! 👏👏👏

Denn #MECFS-Betroffene sind nicht "erschöpft", sie sind schwerst krank und fühlen sich auch so.
Das Kardinalsymptom von #MECFS ist die sog. post-exertional malaise (#PEM), die Verschlechterung der Symptomatik und des Gesamtzustandes nach z.T. geringster Anstrengung.

Diese pathologische Belastungsintoleranz macht die Krankheit zur Hölle.
Deswegen gilt die verbleibende Lebensqualität von #MECFS-Betroffenen im Vergleich mit anderen chronischen Erkrankungen als eine der niedrigsten überhaupt.

Dieser Bericht von @LlewellynKing2 ist daher sicher keine Übertreibung.
Read 4 tweets
@PaulEremenko : “shameful” that aerospace is one of the only industries not to have a plan to meet the #ParisClimateAgreement
Believes that Hydrogen can reach price parity with Kerosene by mid 2020s....ready for the next airliners from Boeing, Airbus, COMAC
Enabled by breakthroughs in Polymer Electrolyte Membrane #PEM technology for generation of Hydrogen and conversion to electricity
Read 7 tweets
Disappointed to see @RCPCHtweets promoting this elearning module which contains outdated, inaccurate and potentially damaging information. The module appears to rely heavily on the deconditioning theory with very little mention of #PEM a hallmark feature of this condition 1/10
ME/CFS is NOT just about tiredness and fatigue. Additionally there is no mention of the abnormal physiological response to activity in people with ME/CFS - instead Graded Exercise Therapy/Graded Activity is heavily promoted and the NICE guidance quoted repeatedly. 2/10
It is important to acknowledge that the NICE guidance frequently referenced in this module is currently under review - the draft updated version takes a very different position regarding GET/graded activity 3/10
Read 10 tweets
@TiaTiaraymond @AlexisTopjian just announced a big change in the @HeartCPR Pediatric #CPR guidelines...ventilate 20-30 times per minute during CPR in children with an airway in place. Based, in part, on @CritCareMed publication by @SuttonB_ICUMD #PedsICU #CPRsaveslives
Take-home messages:

1. High-quality #CPR is the foundation of resuscitation. New data reaffirm the key components of high-quality CPR: adequate compression rate / depth, minimizing interruptions, allowing full chest recoil between compressions, & avoiding excessive ventilation.
2. A respiratory rate of 20 to 30 breaths per minute is new for infants and children who are (a) receiving CPR with an advanced airway in place or (b) receiving rescue breathing and have a pulse.
Read 26 tweets
I am living with #LongCOVID. I am experiencing multi-dimensional and episodic disability, across all dimensions of disability. My primary symptom is fatigue & post-exertion malaise. Along with other symptoms. I want to describe the nature & extent of disability I experience. Image
I have used the @WHO International Classification of Functioning Disability and Health (#ICF) to describe the nature of my disability living with #LongCOVID who.int/classification… Image
Yesterday I measured the extent of disability I experience living with #LongCOVID over the past 30 days, using @WHO World Health Organization Disability Assessment Schedule (#WHODAS). My complex sum score = 68.75% (0=no disability, 100=full disability) who.int/classification… ImageImage
Read 15 tweets
Young & healthy folks: I know the media has told you that you need to be safe to protect the high-risk around you from #COVID19 . But please, you must protect *yourself* also. Here's why – a thread:
6 years ago, I was a young, healthy, active person when I got a virus. 1/8
#MECFS #postCOVID
The virus itself wasn’t a severe case. I was never hospitalized from it. 2/8
#postCOVID19 #MyalgicEncephalomyelitis
Read 9 tweets
1/ The problem with Myalgic Encephalomyeltis/Chronic Fatigue Syndrome #MECFS is that it seems so ridiculous that exercise could actually make patients worse

How can exercise be so bad for #pwME but so good for almost every other serious illness?

THREAD
2/ New study by @4WorkWell @sunsopeningband et al shows that #MECFS patients have metabolic defects that cannot be explained by exercise phobias, deconditioning or 'illness beliefs'

#pwME have reduced oxygen consumption during exercise tests
buff.ly/2CXH6Hj
3/ #pwME have an impaired ability to increase their oxygen consumption during exercise

This is entirely different to every other disease we know including cardiovascular disease, lung disease, end-stage renal disease, hypertension & cystic fibrosis

…nslational-medicine.biomedcentral.com/articles/10.11…
Read 11 tweets
Die übliche Darstellung der Verläufe von #COVID19 ist zu zweidimensional: am Ende ist man NICHT entweder gesund oder tot.

Viele Pathogene können zu schweren chronischen Leiden wie #MECFS führen: Diese Patienten überleben den akuten Infekt, verlieren aber trotzdem ihr Leben. 1/
Eine 2006 in Australien durchgeführte Studie hat gezeigt, dass ganze 11% der an Pfeifferschem Drüsenfieber, Q-Fieber oder Ross-River-Fieber Erkrankten sechs Monate nach der akuten Infektion an #MECFS litten. 2/

ncbi.nlm.nih.gov/pmc/articles/P…
Nach dem Ausbruch von SARS in 2003 entwickelten viele Patienten ein sog. "post-SARS-Syndrom", das symptomatisch weitgehende Übereinstimmung mit #MECFS aufweist. 3/

bmcneurol.biomedcentral.com/articles/10.11…
Read 108 tweets
1/8 #FOAMPed #PEM #FOAMed

Another chat in CED last night about using Ibuprofen in chickenpox, and thought it would make a nice tweetorial! (for more detail check out end of thread for link to blog and podcast!)

Ever heard you shouldn't given ibuprofen to kids with chickenpox?
2/8
The concern is about increased risk of severe skin infections, in particular the dreaded necrotising fasciitis (nec fasc) with group A Strep (GAS).

This first popped up in the 60's with case reports of a GAS outbreak associated with ibuprofen.

journals.lww.com/pidj/Abstract/…
3/8
A few case control studies have been done since, with small sample sizes (Nec fasc is rare!) which seemed to confirm an association.

But, as you all know, correlation does not equal causation!

adc.bmj.com/content/102/10…
Read 8 tweets
Wonderful family celebration all weekend for neice's wedding.
A #joyinspring - I was able to attend abt 60%.

#PEM (a small selection):
sore throat;
muscle pains;
stiff hands;
#KnightBus ran me over;
stranded tortoise, unable to turn over;
barely have a Braincell......
But😊😊😊
This is the #joyinspring ....
Read 3 tweets
1/
Some time ago y discovered this amazing project: archive.worldmapper.org/textindex/text…

Altough it needs updating, I am sure many things shouldn´t have changed a bit.

Like this map of phisicians working

@WHO

(Thread)
2/
My collegue @mardi_steere is currently working with @PECCAfrica and gathering info about health-care human resources in the african continent. Today she detected a frightening number👉6 #PEM / #PEdsICU trained docs for more than 800 millons inhab👇

3/
Yes, believe the numbers

TO make things worse:
It is predicted that by 2050, 35–40% of children and adolescents globally are projected to be living in Africa.

This is what Vearey J et al recently published: bmcpublichealth.biomedcentral.com/articles/10.11…
Read 6 tweets
1. thread.

Nice @FrontPediatrics paper providing guidance for docs and #pwME in the diagnosis and management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS

#MedEd #MedTwitter #chronicillness #chronicpain #SickNotTired
frontiersin.org/article/10.338…
2. #MECFS is commonly misdiagnosed as a #somatic disorder

#pwME "..have been humiliated or dismissed by other providers, so [doctors] will need to be.. nonjudgmental.. & acknowledge that #MECFS is not a #psychological condition but a real illness"

frontiersin.org/article/10.338…
3. #MECFS symptoms can be diverse, complex, fluctuate and overlap with many other conditions making the diagnosis difficult

This @FrontPediatrics paper lists 33 (!) co-morbidities commonly associated with #MECFS

#MedEd #MedTwitter #pwME #SickNotTired
frontiersin.org/article/10.338…
Read 8 tweets

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