I've seen a lot of posts today about the BC007 negative trial results & a lot of good thoughts about issues with this. I'll collect people's thoughts that I think are relevant in this thread.

It's really frustrating to see this happen. Obviously the negative results might be real, but with all of the issues with the trial design, like the outcome measures used (explained in this thread), I worry that BC007 will be "put on the shelf". People will think, "this doesn't work ... Moving on to the next trial."

What if it does actually work in a subset of people with #LongCovid, though? What if it would work for many if tried in combination with other interventions to hit the system from multiple angles? What if it did even actually work for a subset of people in this trial, but for Sx other than fatigue that weren't measured?

It's complicated. 😞 We need a new way of exploring diagnosis & treatment for complex, chronic, multi-system disease. Outcome measures.

See the questionnaire used in the study in the Tweet before this one.

https://x.com/elle_carnitine/status/1856658449314017424?t=l9wmy9P4eZwTu2Rw3AvH2Q&s=19

How important are posture & pillows when you have structural issues in your cervical spine/neck?

(Structural issues that could possibly lead to symptoms of #MECFS, #Dysautonomia, etc., which are discussed using the hashtag #MEspine.)

🧵

https://twitter.com/bryan_johnson/status/1656403905989976064

@bryan_johnson said that he has congenitally narrow internal jugular veins & was able to watch with real-time imaging how his posture affects the blood flow through them.

This blood flow is important, because if there's not enough it can lead to high pressure in the brain.

One of our goals at @renegaderes is to bridge the gap between anecdotes & trials.

We run systematic, decentralized studies by organizing patients to work with their own healthcare providers & then pooling the data. In addition to our direct research, we want to connect people working on different aspects of the problem (patients, caregivers, clinicians, fundamental researchers, clinical researchers, etc.) They can all inform each other's work.

In @remissionbiome we refer to "remission events". They can be short-lived, like even minutes, but during them, ALL Sx of #MECFS go away. You feel like a healthy person.

I've found that most people don't understand what I mean when I describe it ... They get confused that I would refer to something as short as a few mins as a "remission event".

But for the people who have had them, it makes sense.

🧵 with a few key slides from the @wearlumia presentation today

https://twitter.com/tessfalor/status/1819161450419835231

Lumia vs transcranial doppler

A new paper came out about glutamate, #MECFS, & #LongCovid.



It made me realize that it's been almost a year since @KatBoniface's epic glutamate thread!



@IsabelRamirezRD @arta_semita @Really_Richellesciencedirect.com/science/articl…

https://twitter.com/KatBoniface/status/1670688821397307395?t=cShGVezpD1sLK3KbPESFYQ&s=19

She had come across it when looking into the Default Mode Network & Amoxiclav.

https://twitter.com/KatBoniface/status/1670662879757090821?t=Xd-9jwEIFWw3Brzw7j-SUQ&s=19

Wenzhong Xiao (PhD. Computational Research Center for Complex Chronic Diseases, Massachusetts General Hospital;
Co-Director, Ronald Tompkins Harvard ME/CFS Collaborative Research Center)

Severely Ill Patient Big Data Study and Comparing ME / CFS with other diseases

#MeLcFladLisbon Similar cortisol profile in severe ME and LC. morning lower than controls

Klein 2023 - also found lower cortisol

Su 2022 - PASC lower than controls

Carmen Scheibenbogen (MD, Internal Medicine physician; ME/CFS doctor and Deputy Chair, Institute of Medical Immunology at the
University Hospital Charité in Berlin, Germany)

Autoimmunity in ME/CFS and Post COVID Syndrome and Treatment Trial

#MeLcFladLisbon Mirin 2022 - updated #MECFS prevalence

1% worldwide

Up next Phillip Joseph - Neurovascular Dysregulation in ME/CFS

#MeLcFladLisbon Insights from invasive cardiovascular cardiovascular exercise testing

Oxygen uptake through ventilatory, through left side of heart, delivered to muscle, produce atp, CO2 through the venous system, through right side of heart

Ed Yong @edyong209 via video - 3 Years of Covering COVID, Long COVID and ME/CFS: What You Need to Know. Lessons learned by Pulitzer Prize winner in Explanatory Journalism

#MeLcFladLisbon I'm not an expert, not a clinician, not a patient. I'm a journalist who has reported on #MECFS and #LongCovid.

Early 2020 people thought Covid sent you to the hospital or was mild. Then people started to talk about not recovering. When I interviewed scientists and clinicians in May many were surprised

Talk 5 - Lucinda Bateman (presenting via video)

Covid Long haulers, Presentation of Long COVID and Post-Viral Syndromes, Common Comorbidities of Long COVID and the Design of Simple Treatment Plans

#MeLcFladLisbon Bateman Horne center in Utah

BatemanHorneCenter.org

2nd talk - David Systrom

The Nexus Between ME/CFS and Long Covid: Insights from the NIH RECOVER Initiative and the NIH ME/CFS and Long COVID Commonalities Task Force

#MeLcFladLisbon Mission is to tell about project that was offshoot of RECOVER, effort to determine commonalities between #MECFS and #LongCovid. His specialty exercise pathophysiology

Systemic circulatory abnormalities

Skeletal muscle mitochondrial dysfunction (worthy of Dx and Tx)

I'm working on a thread about the overlap between #MECFS & post-spaceflight physiology in 👩🏿‍🚀🧑🏾‍🚀 w/@cstroeckw & @cuboidalhug

I'm going to use this thread to gather references. Please share any you have, especially for dysautonomia & viral reactivation! @RayCronise, any tips or contacts?

#MECFSroadmap nervous system talk 2. Gudrun Lange on Cognitive Function

"Cognitive dysfunction is one of the most frequent and disabling symptoms of #MECFS"

"89% of patients perceive memory & concentration problems" "Cognitive dysfunction in #MECFS is independent from depressive disorder, though depressive disorder can be comorbid"

"Reported relation to lack of effort/motivation is not supported by data"

"They are REAL."

#IIMEC15 Ron Davis He's wearing all black, because it's the "uniform of #MECFS". @DafoeWhitney doesn't do well with color, so he's used to wearing black

#IIMEC15 Professor Robert Phair

The Itaconate Shunt Hypothesis for ME/CFS Start with TCA cycle

NAD is reduced to NADH, used to make ATP

Looking at part of pathway not in the textbooks - The itaconate shunt

#IIMEC15 Kristian Sommerfelt

Funcap - Functional Capacity Questionnaire in #MECFS How do you access functional capacity?

5857 responses from #MECFS patients (online anonymous, spread via social media)

#IIMEC15 Dr Jesper Mehlsen

TREATMENTS - Toward uniform treatment
regimen for ME/CFS Listen to patients about what works and what doesn't work.

#IIMEC15 Professor Jonas Bergquist

Visits to severely affected Patients Andrea affected at 22 after mild infection (maybe EBV)

Extreme progression after a few months

Today fully bedbound

#IIMEC15 Professor Maureen Hanson

Immune Abnormalities and Viruses in ME 65 million people world-wide have #MECFS, same number have #LongCOVID now

Has occurred in outbreaks, some with polio outbreaks

#IIMEC15 Professor Alain Moreau

Long Covid to ME/CFS Transition challenges of recognizing the facets of #LongCOVID

It's like trying to solve the Rubik's cube with changing colors