Wednesday, October 10, 2012

"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 who 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.

3 comments:

  1. There is always co-cure.org

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  2. I agree that the loss of X Global Action leaves a void. They did a great job, and I am glad that you have publicly thanked them.

    Patricia Carter, an administrator of the me/cfs forums, also does a great job. She posts up-to-date links and information several times a day, and she doesn't miss anything important. I believe her forum is easier on the eyes and easier to search than facebook was.

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  3. Thank you Chris. I will continue to follow your blog and am very happy that your daughter is feeling better. Best wishes to you and your family.

    Jill

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