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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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Help needed! : Building Alliances

awol

Senior Member
Messages
417
Reposting this from an earlier thread:


As is clear from the recent patent application submitted by WPI researchers and collaborators, the list of diseases in which XMRV is possibly implicated is very very long:

Prostate Cancer
ME/CFS
Atypical MS
Fibromyalgia
Autism
Bipolar Disorder
Alzheimers
ALS
Lymphoma
Leukemia
Female Cancers
................... and more.

ALL of these possible associations need to be investigated and that will take lots of research. In the meantime, the public needs to be aware that the virus is out there, is no doubt dangerous (there is NO SUCH THING as an infectious retrovirus that is NOT dangerous) and that research is badly needed to find effective testing and screening methods to stop its spread and protect the blood supply. The XMRV story is not just about us!

Therefore, we are trying to put together an outreach team as part of Project ENOUGH!!! These people will try to build alliances with patient organizations and forums for other diseases to design actions to ensure that the necessary research happens, and soon!

I hope there are some people out there who have some small awareness of one or more of these diseases who can offer to help reach out to these related patient groups.
 

awol

Senior Member
Messages
417
This team is the one still desperately in need of members. We have some people for autism. That's about it. So please, if you know ANYTHING about any of these diseases or know someone that does, or are just interested in helping out in this area, send word!