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🕊️

https://threadreaderapp.com/thread/1680856431870738433.html

https://s4me.info/

#MyalgicEncepahlomyelitis
#LongCovid

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🕊️

https://davidfmarks.net/me-cfs-and-the-wessely-school/

#myalgicencepahlomyelitis

Posted on 🐦 by @sibylle_berlin

“For my english speaking followers. The Bundestag debate on #MEcfs took place today. An organized silent demo with camp beds and portraits of #NichtGenesen (NotRecovered) in front of the Bundestag.

A friend took pictures, here they are. 1/2”

https://twitter.com/sibylle_berlin/status/1616164629805236225?s=46&t=XuPHVMHxNpAoNUayf-dO1Q

#MECFSimBundestag #mecfs #cfs #MyalgicEncepahlomyelitis #chronicfatiguesyndrome

'Autonomic Nervous System Regulation Effects of Epipharyngeal Abrasive Therapy for #MyalgicEncepahlomyelitis/#ChronicFatigueSyndrome Associated With Chronic Epipharyngitis'

https://bit.ly/3HeecRG

“CFS group had an increased baseline heart rate vs controls & #CFS group had a greater increase in parasympathetic activity & a decrease in heart rate with nasal abrasion. Oral abrasion elicited a pharyngeal reflex & increased heart rate & both sympathetic & parasympathetic activity”

#mecfs #pwme

🧵
I just got my hidden disabilities card and lanyard which I bought from
https://hiddendisabilitiesstore.com/

One can select from a range of conditions and also specify 5 types of accessibility needs one has (mine are in part 2)

Cards can be sent from 15 different countries

COI: I have no financial or other connection with this service

@chronicillness @spoonies #invisibledisability #invisibledisabilities
#chronicillness #spoonie #spoonies #pwme #MyalgicEncepahlomyelitis
1/

“#ChronicFatigueSyndrome: Carmen Scheibenbogen, on the other hand, wants to find medication”

https://california18.com/chronic-fatigue-syndrome-carmen-scheibenbogen-on-the-other-hand-wants-to-find-medication/8873872023/

The site is full of ads but I found the article itself interesting to learn a bit about Dr Scheibenbogen’s background. I’m guessing it is automatically translated from a German article?

#MEcfs #LongCovid #MyalgicEncepahlomyelitis

T/W: Death

“M.E Recorded As Underlying Cause of Kara’s Death”

https://karajanesings.com/2023/01/06/deathcert/

“Today we share important news with you all: Kara’s death certificate has been issued, and it records myalgic encephalomyelitis as the underlying cause of her death. The primary cause was sepsis, a condition she suffered countless times due to her M.E-related immune dysfunction. “

@mecfs #MyalgicEncepahlomyelitis #mecfs #NeuroME #cfs #cfsme #pwme #meeps

“Avindra Nath on ME/CFS and #LongCovid – ‘We’re Going to Learn a Lot’” by Cort Johnson (Dec 9)
https://bit.ly/3QwDXzR

I have long been excited by the NIH in-depth, intramural inpatient #MEcfs study.

Unfortunately this article doesn't give much away in terms of what it has found so if you only have limited reading ability, perhaps not an article to prioritise reading.

#MyalgicEncepahlomyelitis #chronicfatiguesyndrome #cfs #pwme #cfsme

From the Science for ME forum

Our first News in Brief post of the New Year, for week commencing 2nd Jan 2023 is linked below.

It covers the #MECFS and related news in the following topics:

News, articles and advocacy
Research news
Research
Coming events
& In Memory

https://www.s4me.info/threads/news-in-brief-january-2023.31362/

@mecfs #CFS #pwme #MyalgicEncepahlomyelitis #cfsme

6/

“There is no biomarker (measurable substance indicative of the specific disease) for what I have. The endless dead ends, and “normal” test results, lead me to doubt myself. Labels of depression, anxiety, hypochondria are being thrown around because my physician does not believe in my disease.”

#mecfs #cfs #fibromylgia #MyalgicEncepahlomyelitis

3/
“#MyalgicEncepahlomyelitis, #fibromyalgia, #Dysautonomia, #PosturalOrthostaticTachycardiaSyndrome & #LongCovid are just a few #ChronicIllnesses that present with complex ambiguities. As a part of human nature, we don’t like ambiguity. We prefer concrete evidence and proof. However, not every chronic illness allows for this. So, when you and your loved one are confronted with such a journey, start at a place of compassion and validation. Next, cultivate a sense of understanding and acceptance”

From the Science for ME forum:
Our last News in Brief from 2022 is out now.

Providing headlines and links to further reading for the #MECFS and related news in the following topics:

News, articles and advocacy
Research news and commentary
Research
and #LongCovid research

https://www.s4me.info/threads/news-in-brief-december-2022.30751/

#pwme #PwMEs #MyalgicEncepahlomyelitis