Bjoern

#MECFS #LongCovid

[Bjoern @Bjoernx1]

@pausedME If one explanation fails there is always a new one. Even If they contradict each other, its just nonsense

[Martin @pausedME]

I can refute psychosomatic #MECFS models on a meta level all day.

But concretely: how does psychosomatics explain that I’m back working as a lawyer, doing NGO work and politics, walking my dog daily, and still have to pace every day to avoid PEM?

Still fear? Hysteria?

[Bettina Grande @GrandeBettina]

Kirsten Wittke, Charité, presented CFS_CARE data: NO significant improvement in physical function, fatigue or Bell score after ME/CFS rehabilitation. 43% WORSENED post-rehab, 13% improved.
Clear conclusion: “Primum non nocere.” #MECFS #PEM #NoGET #NoRehab

[Bjoern @Bjoernx1]

@pausedME Looking at the Research, It also seems Like the Reading directly after Waking up in the morning is by far the Most meaningful

[Bjoern @Bjoernx1]

@pausedME In this study hrv wasnt a good predictor of a Crash compared to Symptoms Tracking: https://t.co/TSs3xHu5lE

[ME/CFS Science @mecfsskeptic]

1) Looking at a large dataset (n = 4,244 participants) from the Visible app paper.

Seems that crashes and symptoms are mostly predicted by symptoms the day before and that biometrics such as heart rate variability add relatively little info to that.

[Bjoern @Bjoernx1]

@pausedME I have a 5y old Apple watch so dont know about newer Models but Mine only Tracks sdnn with crazy fluctuations, one hour its 200 and then 15. My polar gives me rMSSD AS Well and fluctuates by maybe 5-10 unit Points at max

[Bjoern @Bjoernx1]

@pausedME I used to rely on my Apple watch for hrv stats but in my opinion its quite unreliable. Apple hrv is more Like a Proxy to my Heart rate while the one measured with a polar chest strap often gives me good hrv values while Apple Shows terrible ones.

[TSG Hoffenheim @tsghoffenheim]

𝗖𝘂𝗿𝗲 𝗠𝗘/𝗖𝗙𝗦 💙🤍

[Bjoern @Bjoernx1]

@pausedME @SKaktus_ I Had a small Phase where i could walk 10k steps and didnt have pem the next day, but eventually after 2-3 weeks of Walking 10k steps. I feel Like Sometimes you can be fine for a while

[Christoph Ströck @cstroeckw]

The Ströck Bakery reaches around 100,000 customers per day or so. Most of them are confronted with ME/CFS on a daily basis. Using the back of the bread bags as an awareness tool has real throughput. That this works in principle is measurable by the fact that this advertising space can be sold. On the other hand, I doubt most people would believe how little the troughput in terms of actual donations (in terms of advertising per se, in this case buying a specific bread leads to a 50 cent donation through Ströck) is.

[Bjoern @Bjoernx1]

#ME/CFS
While a lot of things good go better with regards to research funding, at least attention for the disease is rising. Search traffic for the term ‚ME/CFS‘ from 2004 to today:

[Bjoern @Bjoernx1]

@cagiago_ @grok What about me @grok

[Bjoern @Bjoernx1]

@holo_cene Yes. It goes away completely if I eat once every hour and only 3g of fat and 2g of fibre per meal. Changed my life. Basically gastroparesis diet although I don’t have GP.

[Sarah Buckel @sarah_buckel]

In tiefster Trauer und Betroffenheit teile ich, Kai (@kai_hrmth), diese Nachricht

[Sarah Buckel @sarah_buckel]

TW Abschied/Tod

Ich möchte mich kurz - schmerzlos geht nicht - öffentlich verabschieden, weil mir hier viele über die Jahre eine große seelische Stütze waren!!

#lastdays #euthanasia #MEkills #farewell (very)#severeME #POTS #notjustadecicion #greatestMEdicalscandal‼️

[Rename MECFS @renamemecfs]

We need to rename MECFS asap!!!

[Billy Hanlon @bhanlon15]

Vice President of @Google, Royal Hansen (@royalhansen) shares a heartbreaking account of Long COVID & his son.

“…the medical and scientific developments directed at Long COVID and other post-viral syndromes are emerging at different paces…there is so much more to be done..”

[Sarah Buckel @sarah_buckel]

"In unserer wettbewerbsorientierten Gesellschaft werden chronische Krankheiten eher als persönliches Versagen betrachtet, statt als willkürliches Schicksal, dass sie in Wirklichkeit sind."

[Bjoern @Bjoernx1]

@pamelarbishop @MattMcGorry Same experience

[Céline @healingfromlc]

Quality of life in “recovered” SARS survivors 12 years after infection. Depressing figure…