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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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OMF News February 2017

Helen

Senior Member
Messages
2,243
@Valentijn , I think we have to wait for a definite result of the genetic investigations as the final result might not be about the mithochondrias primarily. We´ll see, hopefully in a near future.

I have had severe muscle weakness, low endurance adn PEM for a long time, probably due to an ongoing Lyme infection, but I´m also fulfilling the criterias for a ME-diagnose. To my surprise, all the symptoms that are connected to affected mitochondrias have disappeared when, during shorter periods, the Lyme treatment has been successful. That happened after many IV treatments with antibiotics (even antibiotics that are known to affect the mitochondrias negatively). Unfortunately the bacterias grew back, and they have still not been erradicated, and all my symptoms related to the mitochondrias are back again.
My single-case story, and many others that I´ve read, indicates for me that the mitochondrial issues are caused by something up-streams. The immune systeme would be a good guess, I think.

Naviaux, emphasizes in his articles that infections of any kind are triggering mitochondrial problems so we´ll see what the research results will show. Mitochondrial supplements have helped me as well, but I assume that´s only a symptomatic treatment. Exciting times with all the research results ahead in a not too far future!
 
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Tuha

Senior Member
Messages
638
I dont know if I remember correctly but I think prof. Davis did a statement about the long-term use of ATB - I think he had some concerns. Did someone remember if he did this statement and where I could find it? Thanks
 

Hajnalka

Senior Member
Messages
910
Location
Germany
Hi @Ben Howell,

I volunteer for a German ME-charity (from bed) and they asked me to find out, if we're allowed to add German subtitles to Ron David's video on youtube? (We're not sure, if the owner of the video always has to be asked first because of copyright stuff.) Maybe we could get an ok for all future OMF-videos, if they're published on youtube?

Thank you so much for all that you do and good luck for your current treatment, love your thread!

Best regards
Joh(anne)

Edit: Tagging @Rose49 as well, thank you so much for your time!
 
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NexusOwl

Spanish advocate
Messages
49
Location
Spain
A friend of mine approached OMF for the same and they told him to use automatic subs :/ I think if someone allowed us to submit subtitles it could be of great help for everyone.