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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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Cort

Phoenix Rising Founder
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Jesus - never saw that coming! (Don't know why - now that I think about it). Our most expensive doctor must be paid for all the work he does doesn't he? Sorry about the sarcasm but I am disappointed not just that he requires ME/CFS patients to pay but that he puts such a high price tag on it; $50 for one month! Its too much for me - too bad!!
 

jenbooks

Guest
Messages
1,270
That is extremely gross...crass...etc. I'm going to write him with my thoughts about that.
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
Our most expensive doctor must be paid for all the work he does doesn't he? Sorry about the sarcasm but I am disappointed not just that he requires ME/CFS patients to pay but that he puts such a high price tag on it; $50 for one month!

I know he's supposed to be a BIG DEAL CFS expert, but honestly, his work makes my head spin. He writes up a very certain protocol one day, then does a complete about-face and totally contradicts the whole thing a few years later. :confused:

Simon says... take 2 steps forward...no, make that 3 steps backward... no make that inside out and back assward. :rolleyes:

He's not worth the money. And you're right JESUS would never have seen THAT coming.
Not that I have any strong opinions about these things.:)
 

jenbooks

Guest
Messages
1,270
Ha ha Wayne.
And yeah DB...he does a lot of about-face. I suspect his peptide creams are valuable as I take Atrium peptides (he started with that) and they are definitely adjunctively helpful. I'd like to see those distributed more widely. Or I'd like to see Atrium add on a heart one.
And I think his basic understanding of a subset of CFIDS downregulating to profound fatigue and even lowering blood volume to protect the heart and the body generally from cardiac arrest or death, makes sense.
But beyond that I just don't know. I'm doubtful that patent foramen ovale or whatever that hole in the heart thing is, is a significant player in ME/CFIDS/SLYME (slime) disease...I don't know why he has so radically abandoned things he felt helped before. And I disagree about oxygen toxicity. Hyperbaric oxygen has saved my life.
On the OTHER hand--the stem cell therapy--and taking patients there--is *fascinating*. I see that as a very hopeful thing for people who've been sick a long time.