• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Spuma Virus?

Carrigon

Senior Member
Messages
808
Location
PA, USA
I was surfing around the net, came across an old letter from 96 that was written to Dateline/NBC from a CFIDS/ME patient. She mentions a Spuma virus that was only found in CFIDS/ME patients. I don't remember hearing about this before. Anyone know what that is? She also describes having had tests that prove why we cannot exercise. This was back in 96, how was all the psychiatric junk ever allowed to reign over this disease when there was physical proof of what is happening to our brains all the way back then? How is all this still being covered up and why don't shows like Dateline/NBC or Oprah or any of the news shows ever do a real show on CFIDS/ME in all these years? Here's the letter she wrote:
http://www.anapsid.org/aboutmk/dateline.html
 

Carrigon

Senior Member
Messages
808
Location
PA, USA
Thanks for the link. So this kind of went nowhere, even though they knew they were finding spumavirus in a subset of CFIDS patients? I don't know why a bigger deal wasn't made out of this. It will be interesting to see if a subset has XMRV and another subset has spumavirus. There could be even more cofactors in why we are all sick.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Have you read "Osler's Web", Carrigon?

We had an "exciting time" for a few years when different retorviruses were being found in CFS and ME patients. Osler's Web describes how the charities and CDC abandoned that reseach etc etc.

Such a huge disappointment when it all died down. I'm just re-reading Osler's Web to remind myself of what happened.
 

Carrigon

Senior Member
Messages
808
Location
PA, USA
Yes, I read Osler's Web years ago. It's just so sad that only people like us seem to read a book like that. I've also read some of Neenyah Ostrom's books and articles. She always seems to be one of the few who really cares about us.
 
A

alexjoan

Guest
Genus of non-oncogenic retroviruses which establish persistent infections in many animal species but are considered non-pathogenic. Its species have been isolated from primates (including humans), cattle, cats, hamsters, horses, and sea lions. Spumaviruses have a foamy or lace-like appearance and are often accompanied by syncytium formation.