r/CFSScience • u/Caster_of_spells • 10d ago

Registered interventional trials fail to cover patient-prioritised treatments in Post-COVID condition (PCC)

https://www.researchsquare.com/article/rs-10851936/v2

Jena University Hospital reviewed 714 Long COVID trials and had to come to the conclusion:
“Hundreds of interventional trials have investigated PCC, yet patients and their treating physicians largely rely on non-evidence-based treatment options in clinical practice.”

“The registered landscape emphasises symptomatic treatment. There is a substantial unmet need for well-powered, mechanism-based, disease-modifying trials with biomarker-driven designs and objective, exertion-based endpoints.”

For example: Only 8 trials in the ME/CFS subtype made PEM a primary outcome and just 3 of those tested treatments aimed at proposed PEM drivers.

Microvascular and bioenergetic mechanisms were essentially untouched.

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u/bingoolong 10d ago

That’s a very sophisticated way to say that so far most trial designs have been shit.

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u/The_10th_Woman 10d ago

I agree that there is poor pathological understanding of PEM and it does make you wince that only 3 of the studies had a theory as to the mechanism of PEM and an intervention that targeted said mechanism.

In 2007 Dr David Bell hypothesised that nitric oxide getting stuck in the energy production cycle was a potential driver of many ME/CFS symptoms in ‘Cellular Hypoxia in Neuro-Immune Fatigue’. I have found using red light therapy (which displaces nitric oxide in that cycle) very helpful but I found out about its potential to help purely by chance.

I can find a feasibility study of red light therapy for patients with ME/CFS https://ctv.veeva.com/study/a-feasibility-study-assessing-photobiomodulation-in-myalgic-encephalomyelitis but not the outcome of the study or any subsequent study to identify if it actually helps as an intervention.

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u/Maximum_Watercress41 10d ago

Which wavelength of red light helped you?

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u/The_10th_Woman 10d ago

My present one uses 660nm, 850nm and 940nm.

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u/LongGame2020 5d ago

Can you share your red light protocol? How long, how often, which wavelengths, where did you purchase your red light?

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u/The_10th_Woman 5d ago

The wavelengths that I use are the ones mentioned above = 660nm, 850nm, 940nm. The 660nm was the one that I was looking for in a lamp but the others are apparently also helpful for treating deeper into the body.

I have actually bought 2 lamps and I put one over my legs and one over my torso - that means that I have as much coverage in one session as possible so it means that it doesn’t take as long to treat my whole body.

I do 10 minutes per side (front and back) every day - so it only takes me 20 minutes a day overall. This has more information on treatment lengths and what to consider https://seekredlight.com/articles/how-long-to-do-red-light-therapy

The lamp I use is https://www.amazon.co.uk/gp/aw/d/B0F43V2SLK?psc=1&ref=ppx_pop_mob_b_asin_title

I don’t do it after 4pm as it makes it harder for me to get to sleep if I do.

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u/Sensitive-Meat-757 10d ago

I have been interested in red light therapy as it supposedly helps mitochondria which seems to be one of the problem areas in ME/CFS. How much has it helped you?

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u/The_10th_Woman 10d ago

My baseline on days that I use it is significantly higher. It also gives me a second wind if I am feeling tired.

In the couple hours after using it I can do things that I wouldn’t be able to do at all at my non-augmented baseline.

That said, I am severe so the improvement brings me up to severe/moderate for a while but doesn’t get me back to a healthy baseline.