What research do you want to see? (study ideas)

[Turtle]

Replicating and expanding Blood volume deficit in postural orthostatic tachycardia syndrome assessed by semiautomated carbon monoxide rebreathing (2024, Clinical Autonomic Research) to include ME/CFS patients, not just pw"POTS".

Ideally: correlating with OI and other symptoms severity, FUNCAP and cerebral blood flow.

And please include all patiens with ME/CFS also the normal blood pressure and normal heart rate group.

 

[Hutan]

[EV] proteomics uncovers energy metabolism, complement system, and [ER] stress response dysregulation postexercise in males with [ME/CFS], 2025,Glass+
Replication of the EV work done by Maureen Hanson's team, with bigger sample sizes and the latest analytical tools.

 

[V.R.T.]

[EV] proteomics uncovers energy metabolism, complement system, and [ER] stress response dysregulation postexercise in males with [ME/CFS], 2025,Glass+
Replication of the EV work done by Maureen Hanson's team, with bigger sample sizes and the latest analytical tools.

Seconded. But also with 48 and 72 hour measurements!

 

[SNT Gatchaman]

Metabolic adaptation and fragility in healthy 3-D in vitro skeletal muscle tissues exposed to Chronic Fatigue Syndrome and Long COVID-19 sera (2025)

I think the findings about muscle strength and the ability to sustain contractions are really interesting and I'd like to see that work replicated quickly.

 

[V.R.T.]

Metabolic adaptation and fragility in healthy 3-D in vitro skeletal muscle tissues exposed to Chronic Fatigue Syndrome and Long COVID-19 sera (2025)

Yeah this work is facinating and if it replicates it could be really important.

 

[Turtle]

Priority funding for this kind of research!!

 

[Hutan]

Longitudinal changes in data from wearables, from triggering illness onset - step count, sleep hours, resting heart rate

The linked study was just for Covid-19, not post-Covid19 ME/CFS, but shows what could be done

Thread 'Assessment of Prolonged Physiological and Behavioral Changes Associated With COVID-19 Infection, 2021, Radin et al'

Jul 9, 2021

Introduction

Long-term COVID symptoms marked by autonomic dysfunction1 and cardiac damage2 following COVID-19 infection have been noted for up to 6 months after symptom onset,3 but to date have not been quantified, to our knowledge. Previous studies have found that wearable data can improve real-time detection of viral illness4 or discrimination of individuals with COVID-19 vs other viral infections.5 Wearable devices provide a way to continuously track an individual’s physiological and behavioral metrics beginning when healthy (ie, before infection), during...

• Andy
• covid-19 heart rate long covid monitoring resting heart rate study idea tachycardia wearables
• Replies: 4
• Forum: Long Covid research

• 

 

[Hutan]

That is, any hypothesis for ME/CFS needs to explain why a person seemingly can have Covid-19 one time and not get ME/CFS, but can be exposed another time and get ME/CFS.

As far as I know, there hasn't been much study of people who got ME/CFS after their second or later Covid-19 infection. Perhaps looking for the factors that might tip someone towards ME/CFS in those people might be useful.

Suggestion of a study to characterise the people and environments when a second or later Covid-19 exposure triggers post-Covid-19 ME/CFS. Is there any factor that seems to be present or absent when ME/CFS happens?

Even just collecting a well-diagnosed cohort to really confirm that this phenomenon is real would be useful.