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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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Rivvka, can you guys talk to anyone who could tell Houghton or other CFSAC folks to publicly amend all the incorrect things HOughton said yesterday?
some of his errors that are seriously wrong that we dont want the misinfo to get out:
- The Weiss info was a different subject, and not rigorous science in ME/CFS.
- Houghton public conclusions far off the mark regarding XMRV research.
- WPI does not have the only positive studies. XMRV has been found in ME/CFS in Japan, in the nasal secretions of immunocompromised patients in Germany, in ME/CFS patients from various European countries tested by de Meirleir in Belgium, I think recently in Spain and Italy, and both WPI and Alter and Lo have found polytropic MLV in ME/CFS patients. Dr. Singh can see the cells in her microscope with her immunohistochemistry technique. Dr. Mikovits and Dr. Bagni have antibody tests, and there are the macaques. Most studies have not activated or amplified their blood samples for XMRV detection.
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anyway, rivvka, glad to hear your campaign is working, I will continue to do both then, personalized emails and the barrage of your making
keep up the good work
I've had a concern about this campaign from day one. Part of this is my own personality, and part comes from experience with spammers. Personalized letters, which cannot be machine generated -- or handled -- is the way to go.
I agree with anciendaze about personalization -- you can't beat it.
I will continue my series of personalized rhesus macaque cartoons. Every one I do is slightly different. (My first tries are linked on the CFS Central blog by Mindy Kitei.) I will send new cartoons to Dr. Mangan, but reserve the option to inflict them more widely.
Oh, and a message to Stuart LeGrice... this is not a WhatHaveYouDoneForMeLately Campaign. This is a WhatHaveYouDoneForMeEVER Campaign.
Can we do this from other countries, too?
It was clear what Dr. LeGrice was doing at the science presentation today, which was to insinuate that what really needed to be done was to clean out those test tubes and get over XMRV.
More possible suggestions:
Alert the media that Ampligen is out there but costs $24K/year out of pocket and patients should have acess to this medication with Medicare/health insurance companies paying for it. There are medications that are helpful to ME/CFS patients but the Federal government will not allow their use or make changes (FDA) that would ensure that these meds are paid for by Medicare and health insurance companies.
The manufacturers of Ampligen are just as much to blame for cost recovery programs - consider contacting them also.
3) Tell the HHS that the CDC must be removed from ALL CFS research - 30 years of damage we do not trust them and we do NOT want them involved. Hit the White House.gov site and tell what you have told the Fed health orgs. Never hurts to alert the Presiden/VP, etc. to an epidemic, retrovirus, etc. and what the Federal government orgs are NOT doing about it.
It is not reasonable to have the CDC removed from all CFS research - if they actually did their job this farce would not still exist. Tell them instead that they need to hire someone from the outside who is not emeshed in the old regime.