WASF3 disrupts mitochondrial respiration and may mediate exercise intolerance in myalgic encephalomyelitis/chronic fatigue syndrome, 2023 Hwang et al

Me too.

 

Absolutely

 

This feature is great, thank you for your efforts on this, @B_V!

 

I don’t know anything about how muscles work, but for me it seems that my underlying muscle strength is quite normal for a sedentary person. On a good day, I can access that strength.

But most of the time I have almost no effective strength at all and am often too weak to (for example) lift a glass to drink out of. But if I rest for a few weeks until the PEM lifts, my muscle strength is back to normal again (incidentally falsifying the deconditioning hypothesis).

It’s like the machinery is all working, but the power supply is usually switched off. On the rare days that the generator is functional, the machinery seems fairly normal. If the researchers tested the mice’s strength at the start (rather than after the exertion) then a normal finding doesn’t seem necessarily inconsistent with some ME experience.

 

1) I don't think it's possible outside of a research setting.

2) So the numbers are a little tricky. The main measure of WASF3 was really between populations....the average in the entire ME/CFS cohort (14 patients w/ muscle biopsies examined) was significantly higher than the average in the controls. That's the measure that Paul thinks is more important. But yes, like all things with ME/CFS, there was variation and not everyone had elevated WASF3.

3) I don't know what chemotherapy she received.

 

This comment stood out to me —

 

This was the most-read article on Washington Post yesterday:

https://twitter.com/user/status/1703492395478712405

 

Brilliant article, thank you @B_V

 

Well said. My muscle strength switches on and off for no obvious reason. I try to lift small amounts of weights on good days to maintain some strength, small amounts are better than doing nothing, but I have days/weeks/months that I can't do 4 reps so it's full stop. Same with muscle balancing exercises, some days I'm almost normal but others I can't do anything.

 

https://twitter.com/user/status/1703779153521082397


The director of the National Heart, Lung, and Blood Institute is Gary Gibbons, and he likely has the power to fully fund Dr. Hwang’s team and trial. His office’s email is NHLBIinfo@nhlbi.nih.gov, note that it’s for Dr. Gibbons when you reach out

 

It looks like Relyviro was rejected by the EMA and is being re-examined. https://www.ema.europa.eu/en/medicines/human/summaries-opinion/albrioza

I hope he gets funding for the ME study with more convincing results.

 

Surprised to see someone say that people with ME have already accessed relvyrio — if that’s what he’s referring to.. https://twitter.com/user/status/1703676597646086269

 

Even when there's not overt 'hatred', there is certain1y mora1 judgment of the patient at a11 1eve1s. As if they are 'chronica11y fatigued' by '1ifesty1e choices', or they are deemed to be 'just 1azy'.

 

I've played soccer/football for a number of years after I've got diagnosed and feeling flat turned into feeling like garbage at some point.

 

How long did it take that garbage feeling to turn into PEM? Felt flat after exercising during PVFS, and then I went straight to getting PEM years later.

 

Very good question that I don't have an exact answer too. It's been about 13 years ago that I've stopped playing and at the time I didn't know about PEM, so I don't think I took much notice.

 

Thanks for sharing @Jaybee00. That message inspired me, and I wrote to NHLBI Director too. Hoping others may follow suit as well.

 

I saw in an NIH media piece on the study that they were also looking at the ER stress inhibitor drug salubrinal and tested it on ME cells in the study and it reduced WASF3 as well as normalized mitochondria energy production.

 

@B_V thank you for all the hard work on this, and for providing the patient community a much needed dose of new discovery and reinvigorated hope. It’s nice to connect again in some way.

You and I originally met near your place in DC in 2013 when I was working at NIH and had recently gotten ME from a protracted viral infection and was trying to reach out to others for help. You were at WaPo and your ME had been deteriorating. Feels like a lifetime ago. Brian you and Beth were both very kind and helpful I wish all the best for you. I was able to continue working at NIH with tons of accommodations until 2021 severity progressed to mostly bedound and I had to stop my cancer research career. I hope you both are doing well in Hawaii.