OUR FAVORITE DRUG (HOPE), AND TIME TO SAY “AUF WIEDERSEHEN”, October 8, 2012, by XMRV Global Action

[Frickly]

"Suffice it to say that the XGA team has reached a turning point, and we wanted to exit with a positive statement about hope. This is not a capitulation, rather an opportune time for us individually to focus on our health and our respective advocacy initiatives. October 8th seemed like an apropos day to close shop, and to pass the torch on to other forums. We hope that the tone and content of this letter conveys our feeling of continuing and irrepressible optimism about research and treatment prospects for neuro-immune diseases and for M.E. Even with XMRV’s demise, we have moved substantially forward. And each of us is continuing to work in the background on our own personal advocacy initiatives."

https://docs.google.com/open?id=0B5WMbsUn0T0TZDJGU2x0NTlnZHM

 

[Frickly]

We’ve already found an error in our Resources for XGA members:Somehow we linked Jennie Spotila with Frank Twisk’s Twitter account. The resource list should read:

ME/NEURO-IMMUNE BLOGS:
Occupy CFS: www.occupycfs.com

TWITTER:
Jennie Spotila: https://twitter.com/knittahknits

 

[gracenote]

We really agonized over the bittersweet decision to close the doors on XGA, and still feel ambivalent... it’s been a tough call, particularly as this has been a home for us on the internet that has resonated with our values. And along the way, although we’ve never met each other, the XGA admin, and many of our group members have become fast friends. Which is why we think of this as a “See you again”, rather than a “Good bye”.

We’ll keep these pages open for another week, and encourage you, our members, to offer your favorite forums and websites for M.E. and neuro-immune disease information. And in the final pages of this document, we too have provided some of our favorite online resources.

As we said at the outset, this is an Auf Wiedersehen, not a good-bye. Thank you for joining us on this journey, and we look forward to the next chapter of hope.

 

[Lynne B]

Hullo Frickly and gracenote,

That's a great closing letter! It's moved me to tears, the way it sums up all the work by all the dedicated scientists and researchers and patient advocates doing their best for us. And you're right, we will prevail, it's simply a matter of more time and more work. I'm looking forward to the many moments ahead as the pieces of the puzzle come together and more and more members leave this forum because they've recovered enough to go on with their lives.

cheers,

Lynne B

 

[waiting]

Excellent closing letter summarizing where XMRV has taken us and where we are now.

Thank you to the XGA members who ran a professional site with up-to-date bulletins. Now rest and focus on your health.

 

[gracenote]

CFS Patient Advocate
WEDNESDAY, OCTOBER 10, 2012

http://cfspatientadvocate.blogspot.com/2012/10/see-you-later.html

"See you later"

The news comes that XMRV Global Action (0n Facebook) is saying "Auf Wiedersehen". This is a bit of disappointing news to say the least. It seems that the world of ME/CFS information and communication is shrinking dramatically in the last few weeks.

Since late 2009, XMRV Global Action has been a clearinghouse for information on neuro-immune illness. They did a first-rate job and their site was the go-to site for many of us. Somehow they were able to consolidate the important current issues without a lot of clutter. This of course is useful to many whose cannot spend a long time on the computer - or for those who have trouble focussing.

This website was extremely useful to me over the years and I am not sure how I am going to replace their information feed. I can say the obvious. I won't be able to. I am going to miss a great deal of information now - information that was essential to form an opinion and a course of action with this difficult illness.

As a daily reader of the site I want to thank the six or eight sponsors, those who ran the site, for their generous daily efforts. What they did was just great. It could not have been done better and many of us are indebted to their joint enterprise. Hopefully someone else will be able to step forward and fill the void left by their departure. Certainly those who ran this site have given others a fine matrix to follow.