RemissionBiome MECFS/LongCovid Patient-Led Science

Project run by @renegaderes, a non-profit 501c3 focused on #MECFS & #LongCovid • • Donate now ▶️

[Jack | amatica health @JackHadfield14]

Excited to have amatica attending @RenegadeRes again.

Nick will be presenting initial findings from our RNA dataset containing 159 patients and 85 control.

I will be in attendance, but not presenting, as I’m in a slight flare preventing long form calls.

Register below!

[Renegade Research @RenegadeRes]

This will feature @IsabelRamirezRD, @tessfalor, @sunsopeningband (University of the Pacific), Chris Armstrong (Director of OMF's Melbourne ME/CFS Collaboration) and Danielle Meadows (Vice President of Research Programs & Operations at OMF) with discussion with the audience.

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

Huge thanks to @liamsLCjourney and his friend for dedicating this donation to our "Innovation Inn" project! 🙏

This donation will allow us to rent Moxy sensors, which measure oxygen in muscles. (Ht to @ahandvanish for telling me about them.)

[Renegade Research @RenegadeRes]

We're hosting a live session with @OpenMedF on July 15 at 5pm ET focused on crashes & post-exertional symptom worsening (PEM/PESE/PENE) in ME/CFS.

These were top priorities identified by the CTN Lite Patient & Caregiver Survey.

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

"My brain hasn't felt like this in a very long time and it's incredible and I don't want it to go away." 😭

This is the response that many people with Craniocervical Instability (CCI) have when their head is lifted with invasive cervical traction (ICT). Many then have the same experience with cervical fusion surgery and many who meet the criteria for ME/CFS go into total remission.

There are hardly any surgeons who have the experience to do this surgery, though, and surgery doesn't work for everyone. It makes some worse. It's risky.

I don't think that CCI and/or mechanical issues are causing all cases of ME/CFS. It needs to be studied more!

We need to figure out how to prevent this altogether, how to stop it from getting worse, how to treat it with non-surgical options.

I think that instant improvement of symptoms in ICT is also a clue about pathophysiology of ME/CFS.

I hope that our paper will move the needle forward.

https://t.co/oBuCnQm3QA

[RemissionBiome MECFS/LongCovid Patient-Led Science @remissionbiome]

Help us reach out goals this #GivingTuesday2025

[Renegade Research @RenegadeRes]

1. It's here...... #GivingTuesday2025 ! In the next 24 hours help us raise 24K to support our mission of pioneering accessible, patient-led efforts to uncover scientific insights and improve overall quality of life for our global MECFS & Long Covid community

[RemissionBiome MECFS/LongCovid Patient-Led Science @remissionbiome]

Help out parent organization @RenegadeRes fundraise for the holidays without additional cost

[Renegade Research @RenegadeRes]

1. MECFS and LC organizations are underfunded, especially patient-led nonprofits. Renegade Research has a mixed funding model including affiliate links and discount codes. With no extra cost to you, potential savings, and raising funds for our projects, it's a win-win! 🧵

[RemissionBiome MECFS/LongCovid Patient-Led Science @remissionbiome]

Today at 2pm
Medtwitter MedX

[Renegade Research @RenegadeRes]

Save the date for our next roundtable on GLP1/GIP in MECFS with Dr Kauffman, Ruhoy and Dempsey. Link in comment. Please not this one is 2 pm ET not the usual 1 pm

[RemissionBiome MECFS/LongCovid Patient-Led Science @remissionbiome]

Reminder: This Friday at 2:00pm ET (USA) - invite your providers and share on your networks so more clinicians can learn how this intervention is helping patients

[Renegade Research @RenegadeRes]

Save the date for our next roundtable on GLP1/GIP in MECFS with Dr Kauffman, Ruhoy and Dempsey. Link in comment. Please not this one is 2 pm ET not the usual 1 pm

[RemissionBiome MECFS/LongCovid Patient-Led Science @remissionbiome]

New Medical Coaching and Consulting for patients with MECFS and long covid started by @RenegadeRes

Watch the recording of the info session https://t.co/pfhR1hjobR

Fill out the interest form https://t.co/jDa9j63To1

or send questions [email protected]

[RemissionBiome MECFS/LongCovid Patient-Led Science @remissionbiome]

Reminder that our @RenegadeRes parent organization has started a Medical Coaching and Consulting for patients with MECFS and long covid.

Watch the recording of the info session https://t.co/pfhR1hjobR

Send questions to [email protected]

[Renegade Research @RenegadeRes]

Announcement!!

1. Clinics are shutting down, but patients w/ MECFS & Long Covid need to regain function. Resources are decreasing, while the need grows!

We are thrilled to announce the launch of a full-service coaching and consulting program tailored for patients with ME/LC

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

I'm looking forward to this! I've been chatting with Alex and he's brilliant. I have his tech ready to start testing on Monday when I get back from vacation.

[John Haughton MD, MS 🌻 @doc4care]

Many clinical roads and biochemical / neuro paths lead to the brainstem.

🔔Lots going on with nerves in the brainstem (that can be disrupted by inflammation and limited blood flow).

[RemissionBiome MECFS/LongCovid Patient-Led Science @remissionbiome]

If you follow us for the RemissionBiome project, you will want to follow our parent organization @RenegadeRes to follow additional details on RB and also follow all of our projects!

[Renegade Research @RenegadeRes]

Recording of our Medical Coaching and Consulting Community Briefing is now posted to our YT channel. See link in comment.

[RemissionBiome MECFS/LongCovid Patient-Led Science @remissionbiome]

If you didn't know, Remission Biome is a project of @RenegadeRes. This announcement highlights our new Medical Coaching and Consulting for patients with MECFS and Long Covid. Join us Friday for more details and fill out the interest form in thread.

[Renegade Research @RenegadeRes]

Announcement!!

1. Clinics are shutting down, but patients w/ MECFS & Long Covid need to regain function. Resources are decreasing, while the need grows!

We are thrilled to announce the launch of a full-service coaching and consulting program tailored for patients with ME/LC

[Todd Davenport @sunsopeningband]

Pacing isn’t curative but it’s a necessary skill for people living with energy limiting conditions. ME and ME-like conditions that are associated with known deficits in aerobic metabolism. Obviously I teach pacing and that’s centered on patients’ specific self-identified needs.

[Isabel Burnett | Renegade Research @IsabelRamirezRD]

PwME, PwLC, POTS: The US is about to experience a scorching heat wave.

Electrolytes, compression, AC/fan, cold caps, cool shower/bath, etc

Please have everything available to you ready.

Most don’t have luxury of pool, but if you do & are able to get in one, use it.
Link 🧵

[Renegade Research @RenegadeRes]

✅️ Accelerate Research + Care! 🔬 #MECFS #longCOVID

Our work impacts the lives of many! Patients + caregivers are listened to and empowered. (campaign link below)

[Renegade Research @RenegadeRes]

We have many exciting projects underway! Any amount of donation helps no matter how small. Thanks we appreciate you! 🙏

🔗 https://www.zeffy
.com/en-US/fundraising/9888892c-f8dc-4dca-b1c2-3603f6f3c755