@munblockchain

@munblockchain

Bettina Grande

@GrandeBettina

1/9 Wenn Post Exertionelle Malaise #PEM nicht verstanden oder gar "anerkannt" ist, steht bei #MECFS rasch die übliche #GET #CBT #KVT Idee im Raum:
Ein (psycho-) therapeutisches Vorgehen, das"Schritt für Schritt", oder "stufenweise" die Möglichkeiten der Belastung steigern soll.

2/9 Warum dieses Vorgehen so gefährlich ist? Weil jede einzelne (!) Überschreitung der individuellen Belastungsgrenze zur womöglich BLEIBENDEN Verschlechterung führen KANN. Das Verständnis, dass die Rechnung für die Belastung zeitverzögert kommt, ist also von größter Bedeutung.

3/9 Gehe ich im "Hier und jetzt" bereits an spürbare Grenzen,ist die Gefahr von #PEM besonders hoch-zugleich ist ein Crash dennoch keine Gewissheit.Das ist die Unberechenbarkeit von PEM. Mit einem Kind entstand das Bild:
Du hast riesigen Hunger, vor dir steht dein Lieblingsessen:

Read 10 tweets

Tom Kindlon

@TomKindlon

🧵
"What Primary Care Practitioners Need to Know about the New NICE Guideline for #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome in Adults" (Dec 2022)

2 of 4 authors are MDs

Free
mdpi.com/2227-9032/10/1…

I thought this was very good. Will post extracts.
#MEcfs #CFS #MedEd
1/

2/

My overview:

Paper has lots of useful points & also helpful overall to show how the NICE guidelines for ME/CFS have changed dramatically in the UK from the 2007 version, with the updated approach being much more sympathetic regarding helping patients.

#MyalgicE #PwME #CFSME

3/

“The new NICE guideline for ME/CFS…recognis[es] the prejudice and stigma that people with ME/CFS often experience in the absence of any specific diagnostic test.”

#mecfs #cfs #neurome #cfsme #myalgice #pwme

Read 26 tweets

Marie-Aude VISINE

@AudeVisine

@nathanpsmad

#covidlong : merci à @nathanpsmad qui ce matin a permis à cet article de @TheGardianNews de remonter sur ma TL - merci @ROXANE66 aussi.
Les experts avertissent que les patients souffrant de covidlong utilisent des traitements coûteux et non éprouvés.
1/
theguardian.com/society/2022/d…

[En voici la traduction que je commenterai entre crochets au fil du texte pour les éléments le nécessitant particulièrement]
Le manque de thérapies approuvées et la nécessité de travailler font que les gens se tournent vers des options telles que le "lavage de sang".
2/

[aphérèse effectuée en Allemagne, à Chypre … où affluent des patients du monde entier – qui en ont les moyens et/ou organisent des collectes sur les réseaux pour financer ces nombreuses cures avant et pendant lesquelles les recommandations et traitements autres que la simple
3/

Read 46 tweets

#BildungAberSicher

@BildungSicher

Guten Morgen, liebe #Follower & solche, die es werden wollen! 😉

Immer wieder passiert es, dass #LongCovidKids #MECFSKids bzw. Eltern in Schulen o. Ämtern Probleme bekommen.
Die Kinder werden trotz deutlicher Symptomatik in den Unterricht gedrängt.

Ein 🧵 von #BildungAberSicher

Für die #MECFSKids #LongCovidKids ist dies höchst problematisch, da sie dann der einzigen bisher bekannten wirksamen #Therapie bzw. #Verhaltensweise, die in diesem Fall sicher angeraten werden kann, nicht nachkommen können:

dem #Pacing!

2/
mecfs.de/was-ist-me-cfs…

Unser neuer #Flyer soll hier erste Hilfe geben.
Er kann, darf und soll an #Lehrkräfte, #Erzieher_innen, #Schulpsycholog_innen, #Schulleitungen & Ämter weitergegeben werden.
Er bietet eine erste Information und weiterführende Links.

3/

Read 13 tweets

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Read 32 tweets

Commercial & Business #InsuranceAgency (in MA)

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Read 5 tweets

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Read 15 tweets

Commercial & Business #InsuranceAgency (in MA)

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Read 17 tweets

Krippenreiter

@krippenreiter

@FlareNetworks

[1/9] Starker Post zum Thema @FlareNetworks #API-Portal! 💪

Die Schnittstelle schlechthin um z.B. über #HTTP-#GET (+#POST) Anfragen, Zustände (#States) der angefragten #Blockchains (+#DLTs) zu erhalten

Mein praktisches Beispiel für die Zukunft: Ein 🧵

https://twitter.com/JoshuaGEdwards/status/1589987291841589249

[2/9] Für alle die meine Zusammenfassung zur #FlareNetworks x #GoogleCloudTech (#GCP) Partnerschaft verpasst hatten, hier der Deepdive:

https://twitter.com/krippenreiter/status/1587887151995297800?s=20&t=ENFV1B3lPW2vbJP88m1P2Q

[3/9] Ich pflege derzeit für ein Portfolio von Assets (#Cash, #Immobilien, #Aktien, #Edelmetalle und #Krypto) eine selbstgebastelte Excel, die mir per API, je nach Wunsch, aktualisierte Zahlen liefert 💪

Read 10 tweets

Lunova Liability Business Auto & Home Insurance

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Read 12 tweets

brittany 🫀

@wildersreese

🧵 It’s #DisabilityPrideMonth and we’re seeing another wave of COVID globally, so here’s a list of reasons why you should watch the Netflix documentary ‘Unrest’ and educate yourself on #MECFS and #LongCovid

ME/CFS, also known as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a multisystem, physical disease that can be identified by its cardinal symptom, PEM (Post Exertional Malaise), in which after activity, the individual experiences a delayed worsening of symptoms. 1/

These symptoms are debilitating and leaves sufferers after activity, even on the mild end of the spectrum, with migraines, light/noise sensitivity, vertigo, nausea, vision changes, widespread muscle/joint pain, weakness, orthostatic intolerance and at its worst, paralysis. 2/

Read 14 tweets

Tom Kindlon

@TomKindlon

[Thread]
It's 3rd anniversary of our paper
"Monitoring treatment harm in #MyalgicEncephalomyelitis / #CFS: A freedom-of-information study of NHS specialist centres in England"

journals.sagepub.com/doi/abs/10.117…
Hopefully it will influence, among other things, #LongCovid clinics

#MEcfs
1/n

2/

Summary article for laypeople:
"Trial By Error: NHS ME/CFS Clinics Lax on Treatment Harms, Study Finds" (June 2019)

virology.ws/2019/07/16/tri…

#GradedExerciseTherapy #GET #cognitivebehaviouraltherapy #CBT #MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

3/

I searched but couldn't find a legal copy online of "Monitoring treatment harm in #MyalgicE/#ChronicFatigueSyndrome ..." that others can access so I uploaded here researchgate.net/publication/33… what we submitted to the journal which is something we own the copyright on.

#MEcfs #CFS

Read 4 tweets

Dr K Fearnley

@fearnley_k

https://twitter.com/dafoewhitney/status/1528878798686412800

🚨Attention medics.🚨 An important thread on #MyalgicEncephalomyelitis Forget what you think you know. It is not psychosomatic. These pts are desperately physically unwell, likely with a chronic infection. #MedTwitter #MedEd #TeamGP 🧵 1/

https://twitter.com/dafoewhitney/status/1528878798686412800

Bedbound & housebound, they make up #millionsmissing. They maybe out of sight, but they are never far from my mind.

Neglect of #ME is the biggest medical scandal of the 21st century. The medical community will soon look back on their treatment of #pwME with horror & shame./2

But some Drs maybe forgiven for their ignorance. #ME fails to feature on the UK medical curriculum and as such, awareness & understanding is low.

The condition has also been highly stigmatised & erroneously - but deliberately - labelled psychological./3

Read 22 tweets

Nick Else

@nick2155

"In Australia, the #RACGP continues to recommend that GPs prescribe #GET and #CBT for ME. Fatigue clinics continue to operate, risking continued harm to ME patients and people with other post-viral illnesses, including #LongCovid" #mecfs tinyurl.com/4x2eshha

"What I didn’t know at the time, was that ME patients were fighting to interrogate the notion that #GET and #CBT – were effective.

"It turns out, a group of psychiatrists in the UK had altered the evidence in the major scientific study advocating the use of GET and CBT for ME, changing the thresholds for what counted as recovery."

Read 4 tweets

BODY POLITIC

@itsbodypolitic

Graded Exercise Therapy (#GET), once recommended as "treatment" for patients with #MECFS, has been found in multiple studies to instead cause patients *significant* harm. Thread ⬇️ graphics by Body Politic Vice Pres. Lauren Nichols: instagram.com/p/CKl50EyhT84/

In 1989 an erroneous & damaging paper about a “new approach” to chronic fatigue emerged in a British medical journal.

In it, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) was dismissed as psychological. News flash: it isn’t. Not even remotely. It stated that the pain patients felt after exercising was in their heads and that if they exercised enough, their symptoms would subside.

Read 10 tweets

Susan Hopkins

@SMHopkins

I lead the #SIRENStudy and have been studying the impact of prior infection with COVID-19 and COVID-19 vaccinations on immunity for more than 18 months. We have published multiple studies with collaborators. The most recent preprint is available here medrxiv.org/content/10.110… 1/6

In this pre-print, which is under peer review, we demonstrate that 2 doses of vaccination on top of prior of infection, significantly reduces both asymptomatic & symptomatic infection compared to infection alone - Table 3 - the longer since primary infection the more effect 2/6

This is on top of the evidence provided in the original paper showing immunity 81-87% immunity with the original strains and early alpha period.... but just as immunity wanes from vaccines so it does from primary infection. 3/6
pubmed.ncbi.nlm.nih.gov/33844963/

Read 6 tweets

Trisha Price

@hummbugpie

Trigger warning- Will try keep this short. Uncovering the scale of medical gaslighting and corporate corruption. Who teaches our doctors to dismiss medically unexplained symptoms as hysteria?

Lynn Turner- MUS management PowerPoint, Kings College London

She also developed the GAS-light model as way of determining which treatments were worth trialling ie cost effectiveness - gauging effectiveness based on patient set goals for graded assessment. If we set the goals, its not on them if the treatments aren't effective, it's on us.

Michael Sharpe is a psychiatrist&an author of the fraudulent #PACETrial. He does consulting work for insurance companies & advises them that #ME is a mental health disorder. Here he consulting for Swiss Re, classifying #LC as 'health anxiety'-

Read 14 tweets

Emma 💉💉 Reinhold😷 #BLM

@DrEReinhold

@RcgpFaculties

@RcgpFaculties @MartinRCGP @AoMRC @HelenStokesLam @RCSnews
#notinmyname
This statement supposedly from RCs does not represent my views as a Clinical Advisor to the @rcgp. I find it utterly inappropriate for it to have been released after the conclusion of the @NICEComms process.

https://twitter.com/doctorasadkhan/status/1454294524856094720

@doctorasadkhan

In fact, I'm embarrassed on behalf of my whole profession, who are allowing a small but vocal minority with vested interests (protecting their own careers) to speak on our behalf. In the context of #LongCovid, many more of us now know the truth about #MECFS.
@doctorasadkhan

#MECFS and #LongCovid are not going to be cured by some exercise & CBT, no matter how loudly those who offer them to unsuspecting patients scream and throw their toys around. If you think you've cured someone with these treatments MAYBE YOUR PATIENT LIED TO GET AWAY FROM YOU!

Read 5 tweets

Tom Kindlon

@TomKindlon

[Thread]
"#MyalgicEncephalomyelitis/#ChronicFatigueSyndrome: Essentials of Diagnosis & Management" (from US ME/#CFS Clinician Coalition)

mayoclinicproceedings.org/article/S0025-…

"21 clinicians specializing in ME/CFS convened to discuss best clinical practices for adults affected by #MECFS"

1/

2/
"the United States and other governments as well as major health care organizations have recently withdrawn graded exercise and cognitive-behavioral therapy as the treatment of choice for patients with ME/#CFS

#ChronicFatigueSyndrome #MEcfs #MyalgicE #PwME #MyE #MEeps

3/
"There are many steps that clinicians can take to improve the health, function, & quality of life of those with ME/#CFS, including those in whom #MECFS develops after COVID-19"

#PostViralFatigueSyndrome #PostViralSyndrome #PVFS #LongCovid #Covidlonghaulers #PostCovidSyndrome

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