Up Close and Personal at 2010 NJCFSA conference

Sue C;130891 said:

Hi everyone, It has been a long while since posting. Yesterday, had an early birthday present attending the conference. It was 'packed' with families and as noted those from WPI, including VIP lab member who is in front lines of XMRV testing. After my diagnosis in 1995 by Paul Cheney, MD and f/ups with him for several yerars, I had not been this excited and enthused since one on one conversations with him. Yes, the technology which allows one to see and listen to these researchers and doctors is superb. This forum leaves no stone unturned, And as in hiv/aids activism, when they got angry, people began to listen. Practiced as a nurse in mid 1980's when we started getting patients with opportunistic infections. It was scary not knowing what particular entity that we were exposed to or bringing to our families and others. When the blood supply was in real danger, it brought AIDS to the front pages. It was my impression, yesterday that it IS the time to not ease on what we know, support research keep in touch and respond, as when Dr Bell asked for support of WPI. PANDORA was represented and had sign up for those who would contact at least five of their local docs, as there are still so many who have no idea what we have is real and serious. It has been and is being maligned by others, in high places of influence and power. It was emotional to listen to older docs like James Oleske MD who worked in the eighties with AIDS babies and families in Newark, NJ when his peers questioned his choices. His emphasis, was on, despite the severity, to aim for QOL quality of life, that it is critical in longterm care and tx of child and adult.
Judy Mikovits was first guest speaker, and as noted well, by another post, there were other WPI attendees. Realized that it is symbiotic, meaning I heard repeated that we, the patients are important to them, as they the researchers and doctors are vital to us. The highly technical, scientific studies were explained and outlined great. But as a nurse sitting next to me asked, 'did you get that?' Its important for me to be validated by those who know the truth of the matter. If I had wondered if or when to be tested for XMRV, there is no doubt today. Why doesn't the gov't want those with cfs/me to be tested? Could it be that there is power in our numbers? Susan Levine focused on education and about her new role on the CFSAComittee. Shared that Dennis Mangan new NIH director will use cfs/me from now on. There is now a broader picture of overlap: immune, viral, CNS requiring a team to deal with complexities. During Q&A there was a woman from Europe there as rep for those with more limited access to experienced doctors due to politics. She asked about those back in Europe if they could be tx'd here. And reply focused on using Skype having virtual management with each pt's unique profile. Then a tailor made approach with their tx is possible. No one doubts that many have lost hope or do not have social support to deal with their problems. Also asked if difference in FM and CFS and reply was yes, in gene expression, yet can have dual dx. Their summary of CFSAC mtg was that the ' funding process is so rigorous, and frustration that the research reviewers were not from related fields!' Most moving to researchers were the testimonies of patients (quote)
Would like to know more (possible dvd by NJCFSA) as it was briefly mentioned at end of Q&A by Judy, about ....get hyper methylated, puts itself at the start site of genes...change in methylation. Johns Hopkins study of epigenic drugs to silence inheritable reversible identical twins and early changes in autism. Detection of XMRV in nasal swabs in immunocompromised pts leading to a respiratory resevoir for the retrovirus. (not T and B cells as thought?) Of utmost importance is consistency of methods used (done in non mouse labs!)and snap freeze and culture. Due to PEM post exertion better stop as am breaking notes up into pieces, It is an experience that I hope others are able to share, discuss and feel positive about.
Sue C

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