- WPI announced today that a new, better diagnostic test for XMRV is now available. Read the press release (it's a pdf file, so click on the link under Breaking News) or visit the VIP Diagnostics laboratory site that is administering the test (though the website was down today).
- Newspaper article about WPI's response to the UK study.
- An online discussion forum on XMRV testing in the UK. At least one person on the forum (in the UK) tested positive for XMRV; others are waiting for their test results.
- Whittemore Peterson Institute Reseacrh Questionnaire. Fill this out if you're interested in possibly participating in future WPI research studies on CFS and XMRV. Right now, they're just collecting data, as I understand it. I believe that anyone, anywhere in the world, can fill out the form. I haven't gotten around to doing this yet for the boys and I, but I plan to.
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
Dear Sue! Great job with the blog, I read it in one sit. I am also a CFS sufferer and I live in Poland where doctors do not even try to help. I am also trying all kinds of remedies. Now I am taking antibiotics being treated from Mycoplasma (tests negative) I have been reading also about XMRV being very upset there is no place here I can make a test. Anyway, what I do not seem to find is even if the person is positive what kind of treatment do they suggest?
ReplyDeleteBest regards.
Jana Kucharska
Hi Sue,
ReplyDeleteI've been in a crash, too. I find them scary wince they remind me of how I was all the time in the beginning. Don't push yourself. Rest and let it pass. I'm trying to do the same.
hugs
Pris
Dear Jana -
ReplyDeleteWelcome to my blog!
You bring up a couple of good points that I'm sure others are wondering about, too:
- Anyone can have the XMRV testing done, anywhere in the world - they send a test kit, your doctor or a local lab takes a blood sample according to the instructions and sends the kit back to the lab in the US.
- And you pinpointed the main problem at this point - there is not yet any action you can take if you test positive! I know my doctor is firm on this point - she won't order tests if she doesn't know what to do with the results. At this point, the testing is just to determine who's positive and who's negative. Hopefully, treatments won't be too far away, though - WPI says they're working to test drugs already on the market to see what might work against XMRV.
I plan to wait until there's something to do with the test results...though my older son and I will be tested as part of a study we're signed up for (it was originally going to focus only on EBV and HHV-6, but they added XMRV to the protocol as soon as it was discovered).
Sue
Pris -
ReplyDeleteI'm sure you've been extra-active with your book being published recently! I remember how exhausting that was...and I didn't have CFS yet!
Take good care of yourself and rest up...
Sue
Great information Sue. Thanks for posting.
ReplyDelete