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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Peptide T, or, rather, its 3rd generation: monomeric DAPTA.
Although I think it is wonderful that Judy wants our input, I guess I'm a bit confused. Shouldn't the WPI have enough knowledge about this sort of thing - they are the scientists after all. Why are they needing our help on this? Am I alone in thinking this?
No....this was my first thought. Actually, my first thought was that there must have been some kind of miscommunication here as I cannot imagine why WPI would be asking us how to treat XMRV. Sorry, doesn't make any sense to me.
Shouldn't the WPI have enough knowledge about this sort of thing - they are the scientists after all. Why are they needing our help on this?
I cannot imagine why WPI would be asking us how to treat XMRV. Sorry, doesn't make any sense to me.
She is not asking us how she should treat XMRV, she is asking what treatment options we would like to see tested, or think she should test. The WPI scientists are very busy people and are not omniscient. What is so wrong with accepting ideas? I am happy she is so interested in the patients and is open minded, I don't understand why this should deserve criticism. Most other scientists think inside a box the size of an ice cube.
How about Dr. Cheney's treatments, such as pulsed inosine, alternated with wormwood swish and spit?
Also, how about Virastop (Ezymedica proteolytic enzyme formulation)?
CFS since, with all due respect, what is the difference between asking us how she should treat XMRV, and asking what treatment options we would like to see tested? It sounds like they are out of ideas and looking for help. Of course, i do not beleive this is the case but only think that Rrrr...worded the post in an unfortunate way. I have always valued all Rrrr's posts and hope she/he does not take offense to my questions and concerns.
The original post is as follows:
“Judy Mikovits, in an email to me, said that at this time she welcomes hearing thoughts about treatment options to consider. So I'd like to come up with, on this thread, a clean, uncluttered list of treatment options, meds and natural approaches, for XMRV. Let's try to come up with 25 of the top treatment options to send to her.”
“I will start it:
1. Spironolactone (it inhibits androgens, and androgens turn on XMRV). Judy said when she gets a few days in the lab, she'd like to design and test this drug on XMRV.
others? “
Rrrr….then cleared up the confusion in this post that I missed earlier.
"they don't "need" our help. she did not ask for our help. i told her i had a treatment idea and she said she welcomed it. i gave her mine (spironolactone) and to my shock she said it was a good idea and she wanted to test it in the lab. and then said she welcomes all treatment ideas at this time. i'm sure they have more than enough of their own. but input from expert patients like us can only help expand the pool of ideas! "
I do not understand why you take such offense at my and others confusion about this post. I think it is easy to misinterpret this post and will always speak my mind if I am unclear about something.
Thank you Rrrr....for clearing this up for those of us that were confused.
NOTE: judy mikovits did not ask me to post a request for treatment ideas online. she simply said she is open to hearing about treatment ideas. it does not mean she is out of her own treatment ideas, it just means she is open to hearing our thoughts too. so instead of me just sending her my 5 or so ideas, i thought why not ask this amazing list of well-researched patients for their ideas, too?!
best,
rrrr