ALL HANDS ON DECK! Let CBS know what you think of new spinal fluid test evidence & PACE Trial

[Late breaking news: The Feb 23 episode of "CBS Evening News with Katie Couric" did indeed address ME/CFS, but not headlining the subject noted below. Katie began by stating "Chronic fatigue syndrome – new scientific evidence that it's not in the mind of the patient but very real." She is referring to breaking news regarding a research report on a new spinal fluid test that has been able to clearly distinguish ME/CFS patients and Lyme patients from each other and from healthy controls. CBS News Online offers the episode at Advocates' comments to CBS continue to be helpful.]

Rik Carlson, head of the Vermont CFIDS Association, distributed the following e-mail CALL TO ACTION on behalf of XMRV Global Action late Tuesday night, Feb 22, before the spinal fluid test news broke. To keep up with the latest news on this, go to the organization's Facebook site at

ALL HANDS ON DECK! Permission to repost

I've been told by 2 people that Katie Couric will be reporting on the UK PACE trials Wednesday, February 23 on CBS Evening News. This will be the first national evening news report I've seen in years on ME/CFS.

We do not know what angle Katie will take or how balanced her report will be but YOU can try to make it more balanced. Write or call CBS Evening News NOW and tell them your concerns about the PACE trial.

• In particular, share your non-improvement or deterioration with graded exercise therapy or cognitive behavioral therapy.

Tell her you do not fit the Oxford criteria (which is not used by the majority of ME/CFS researchers and stresses fatigue without the specific inclusion of other symptoms), you have more symptoms than just fatigue, and therefore, the PACE results do not apply to you.

Refer her to ME/CFS researchers like the Alan/ Kathy Light at the University of Utah, Dr. Leonard Jason (DePaul University, Chicago), Dr. Nancy Klimas (the University of Miami), Dr. Chris Snell (University of the Pacific, California) to talk about what happens biologically to ME/CFS patients when they exercise.

Here is a blog that puts this in a proper perspective:

CBS Contact info:

(Note: even if the story gets moved to another day, at least CBS will be left with a story they might follow and this is a chance to counteract the damaging media reports we have already encountered.l)

Thank you
Rik Carlson on behalf of XMRV Global Action

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