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

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[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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3 thoughts on “ALL HANDS ON DECK! Let CBS know what you think of new spinal fluid test evidence & PACE Trial”

  1. aidanwalsh says:

    stand up comedy at its best…i was living in montreal for years with the disease and my doctors there were always concerned for my health…now i am living in the u.k. and yes i have some good doctors following me but i feel very sorry for the majority of cfs/m.e. patients here in the u.k. because of the phycologists like simon wessely and his school of thoughts… when i hear this lunatic going on and on about the illness as purely in ones head or imagination and at the same time he benifits from the insurance industry to downplay this illness so these companies deny patients their insurance policy monies… i am truly very sorry for these patients and i am really ashamed of being british born…it is inhumane over here and sometimes i think it is a third world country…it is shocking,immoral and a complete violation of human rights what goes on here…the british government also goes on about human rights issues in other countries yet they treat their own worse than animals…i am glad researchers now found something in the spinal fluids of patients and i myself had the highest pressure of fluid ever recorded at the university of miama years ago by a neurologist which was over 500 opening pressure…this man saved my life with 80 mg. of prednisone and if it was not for him i would be dead today…the reason for him finding this was in medicine ‘listen to what your patients are telling you in their medical history’ this is why i am alive today ‘he listened to me’ i think it is time now for all governments to get off their asses and put a stop to this serious disease and put the clowns back in the closet where they belong and patients to file the numerous lawsuits for neglect on this disease from governments to the low lifes in the insurance industries…enough is enough!! i have suffered 21 years with this monster and i look forward to rising again to file my lawsuits…meanwhile the memorial lists continue to grow yet the clowns still are getting attention…’lunatics’…

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  3. aidanwalsh says:

    it was good to see cbs drop the phyco-babblers for physical findings in spinal fluids and do away with the ‘nice’ b.s. i guess now simon ‘the weasle’ wessely must be reaching for his prozac before heading for a nervous breakdown… when is this retarded lunatic going to realize he cannot win the physical battle with pure medical research…are any of you going to the wedding this summer for simon wessely and peter white when these lovers tie the knot…i guess now it is time in the u.k. to strip the ‘weasle’ of funding and put it into spinal tap research and stop the waste of lost funding…sincerely aidan walsh southampton, u.k.

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