I'm with you, muffin...I have a 21 y.o. grdau with CFS since age 14. She just came to live with me as she was destitute, unable to care for herself, and with no health insurance or ability to fend for herself and fill out forms for SSDI/SSI. I'm doing that now and have good dr. for her. I also have one daughter with slight signs of CFS, and a briliant 12 y.o. grson that so far seem very well and healthy.
Note, on co-cure today, they broadcast a replication study in the UK that found NO XMRV in any tested; however, they also used a group of their 'unwell' patients (who could have anything in the world, not real CFS/ME), and did not use the stringent methodology that the Wittemore Peterson Institute did, AND one of the so-called 'researchers' was of the psychobabble group, Dr. Simon Wesselly.
Did you know the UK has a ban on M.E files of the government being opened until something like 2035 or later? Very interesting.
The more I read and learn, the more I know good scientists are very interested in this new retrovirus and are studiously trying to replicate the pilot study in CFS. One can only wait and be patient and hope.
Dr. Judy Milovits, the lead scientist on the pilot study, worked for 22 years at the National Cancer Institute, and knows her retroviruses very well, will be giving a video broadcast on Jan 22 about the further work taking place. Should be interesting.
Best to you, and the next generations to come!