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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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Thanks SOC and congratulations on your daughters recovery! And good luck on yours.....
1) Type of onset - gradual loss of cognitive and physical energy.
2) Age 60 years.
3) Degree to completely bedbound with loss of consciousness 3 times.
4) Length 6 years at worst
5) Effective treatment - can't specify except those (eg Canadians/Hooper I followed - it's been
12 years).
6) Degree recovery - walking (just) - not free of obvious recurring genitory/urinary infections -
musculoskeletal problems may be increasing.
7) Comment/Advice/Recommended Resources - Here on PR - latest research findings/
understandings/drug trialings/members contributions.
To SOC,
Correct me if I am wrong, but it seems that your mother, you and your daughter all suffer from a similar CFS like illness, which causes muscle pain and fatigue. Has anyone considered the possibility of some type of mitochondrial myopathy? (which classically has a mother to daughter inheritance pattern, because the mitochondria are passed from the mother not the father).
The response to valcyclovir may be due to a direct effect on the muscles and not its anti-viral effect.
I was more than a little confusing in my post and getting my "mother" and "daughter" scrambled. Only my daughter and I in the direct line have been diagnosed with ME/CFS. However], my mother did die of something that resembled MS -- we don't know more because she didn't choose to have any medical advice or treatment.
It's certainly possible that there is a familial mitrochondrial myopathy. As far as I know, none of our doctors have considered it.
Our family medical history has some interesting clues -- 3 men in 3 different generations on my mother's side had Hodgkin's Lymphona, which is associated with EBV. My father's brother also had ME/CFS (so not in the maternal line) and is in full remission after 6-8 years on antivirals. These clues suggest an inherited problem handling herpesviruses, but it certainly isn't more than a suggestion. While we've been assuming the AVs effecting the viruses is what's causing the remissions and improvements, it could also be the effect of valcyclovir on the muscles.
I will have to look into the mitochondrial myopathy issue. Thanks for the info!
I am recovering in progress. Do you want my story now or in 3 or 6 months? Or updates at a few time points as it progresses?
This CFIDS Assn post and Suzanne Vernon's comment about studying people who had recovered reminded me of this thread.
"How would you define "remission"?"
https://www.facebook.com/photo.php?....74987762107.90825.47921632107&type=1&theater
Also, still wondering