Carol 🛌👩‍🦼😷 @TickedOffCodess

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Carol 🛌👩‍🦼😷 @TickedOffCodess

11 hours ago

@lara64390 I’m not sure. It’s only ever helped like 2-3%. Only way to find out would be to stop it, but I don’t want to change things in case it’s helping. In the past year, every change I have made seems to have negative impact.

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Carol 🛌👩‍🦼😷 @TickedOffCodess

12 hours ago

@lara64390 Due to the repeated PEM from trialing various dosages, my baseline is now much lower. It’s much easier to trigger PEM. With a lower baseline, my fatigue seems worse as well.

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Carol 🛌👩‍🦼😷 @TickedOffCodess

2 days ago

@chydorina I am interested. I stopped Prodrome glia in 2024 when they ran out of soft gels and I had to switch to oil.

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Sabrina Poirier (On Hiatus) 🇨🇦 @Sabrina_Poirier

5 days ago

I love art and the stories it can tell. But messaging matters & bad messaging is just that. Toxic positivity harms our community regularly by creating a false understanding of ME. Sadly, we have way too many clinics/orgs contributing to this, centering their own comfort. 1/

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Rob Wüst @RobWust

6 days ago

Our new study: in 121 people with #LongCOVID, recovery of the autonomic nervous system was delayed after exertion. Longer or more intense activity affected recovery into the next night. HRV may support personalised pacing and predict PEM. @KasperJanssen doi.org/10.1007/s40279…

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Wayside Scribbles @waysidescribble

2 months ago

– Help! – But have you tried just ignoring the water? #longcovid #postcovid #ableism #satire

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Brian Fog @useless_priest

6 days ago

We’re at a crossroads now, where we can keep placating the ableist onlookers by falsely celebrating what some with ME can do…* Or we can decide to put the most severe front and centre and find ways to reduce the hour by hour suffering and indignity they deal with.

Solve ME/CFS Initiative @PlzSolveCFS

2 weeks ago

Save your spot at the global premiere of Unbound, a dance film created by twenty people living with #MECFS, #LongCovid, and other disabilities. July 29 at 6:30 PM ET REGISTER FOR FREE: ow.ly/Chbb50ZqULE #UnboundFilm #DisabilityCulture #LongCovid #MECFS

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Carol 🛌👩‍🦼😷 @TickedOffCodess

a week ago

@lara64390 Yes. I don’t tolerate 6 mg of LDN, but I do tolerate 4.5 Within 12 hours of taking 6, I get PEM. I’ve been on 4.5 mg since October 2020, and didn’t know if it was helping or not. I recently stopped it and I worsened. It’s definitely helping with internal vibrations & restlessnes

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Tess Falor, Ph.D. | Renegade Research @tessfalor

2 weeks ago

Let's literally not throw them out 😆 ... if you have any devices sitting around that didn't work for you, please donate them to our lending library! We are a 501(c)(3) and can provide a receipt for tax purposes.

Tess Falor, Ph.D. | Renegade Research @tessfalor

2 weeks ago

Just because a treatment doesn't work for the majority doesn't mean we should throw it out. We should study why it works for some and not others.

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Tess Falor, Ph.D. | Renegade Research @tessfalor

2 weeks ago

I'm personally motivated to do this project because of my experience with the Truvaga vagus nerve stimulator. I tried it years ago + 3 other VNS devices over the years and they didn't do anything for me. I would not have tried again, especially since the device costs $500 ...

Renegade Research @RenegadeRes

2 weeks ago

1/ 🚨 Big news: @PlzSolveCFS has awarded @RenegadeRes a Catalyst Award to launch SIGNAL - a decentralized platform to test promising therapeutic devices for ME/CFS and Long COVID. Here's what it means for patients 🧵

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Carol 🛌👩‍🦼😷 @TickedOffCodess

3 weeks ago

@kirstler31 @AndrewG76201347 I take in the evening: 25 mg at 6 pm and 50 mg at 9 pm. I don’t find it sedating but I also don’t find Benadryl sedating unless it’s IV.

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Anna Wood @Annakwood

2 months ago

This looks good - a new (free) app for tracking PEM - links to a range of wearables and gives updates during the day (like visible but free). Developed by a university fatiguesense.com

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Carol 🛌👩‍🦼😷 @TickedOffCodess

2 months ago

@lara64390 Lower cognitive and physical thresholds. And all my comorbidities flare. POTS gets worse, MCAS gets worse. It’s like everything destabilizes at once.

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Carol 🛌👩‍🦼😷 @TickedOffCodess

2 months ago

@lara64390 Sore throat, insomnia despite sleep meds, extreme fatigue, joint pain, headaches, night sweats, nightmares. Worsening muscle fatigue and weakness.

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Carol 🛌👩‍🦼😷 @TickedOffCodess

2 months ago

@lara64390 I tried every 7 days, then every 10 days, and by the last month I was doing every 14 days. PEM would last from 6-10 days. Did not try lower than 0.5.