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Posted by Cort Johnson

NeedyMeds could help some ME/CFS patients save a substantial amount of money on drug costs

Taking a Big Hit- The CDC found that the average family containing someone with chronic fatigue syndrome took about a $15,000 hit yearly in medical costs, lost wages etc…and that about 1/4 of medical costs were paid directly out of pocket. .. It’s clear that many families are hit hard financially by ME/CFS and anything they can do to shave costs would be a big help.

Lessening That Hit - In a recent webinar Pandora teamed up with NeedyMeds, a non-profit organization dedicated to finding ways people can save money on medications, to illuminate some interesting options.(The program is mostly for ‘low income’ patient but a quick glance at the programs indicated that families with under $100,000 in income can participate in some of them.) Since 1997 NeedyMeds has developed a variety of impressive databases that track a variety of drug and health assistance programs and it provides its own drug discount card.… Read More

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Posted by Cort Johnson

Marly Silverman is a worker! How many people have played a major role in creating not one or two but three organizations? Marly first created PANDORA, then in response to the CDC’s new website, dreamed up the MWCPA and then was a key figure in getting the Coalition4MECFS off the ground.

Plainly put Marly makes things happen. My first hankering of that occurred in 2007 while I was stewing in Southern California bemoaning my inability to get to the Florida Conference. It was Marly who not only told me to get off my butt and make it happen and provided some funds to do that.

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Posted by Cort Johnson

March 6th

  • The
    WPI’s response to CROI
    was

    “It is interesting that infectious XMRV is
    still found only in human cells and not in mouse cells or mice. In addition,
    these data have little to say about XMRV infection in humans.” In an email Dr.
    Mikovits stated “There is still not one piece of evidence of contamination in
    the Science paper. All of the authors stand by the conclusions and data in
    Lombardi et al”.

    Dr.
    Deckoff-Jones Talks
    – Dr. Mikovits was too busy to do an interview
    but Dr. Deckoff-Jones got her two cents in her personal blog.

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The 2007 PANDORA Patient’s Conference by Cort Johnson: PART II: Dr Bell and Sleep, Dr. De Meirleir, and the Gut / A Talk With the Experts / The Sand Castle Awards / Dr. Cheney’s Keynote Address

David Bell, MD – Sleep Disorders are they the Cause or the side effect of CFS?

An engaging talker with a sly sense of humor Dr. Bell showed an impressive grasp of the sleep issues in CFS. He listed nine clinical sleep abnormalities that can be found in CFS and FM. Importantly Dr. Bell noted that studies have shown that 18% of ‘CFS patients’ don’t have CFS: they have a sleep disorder that can, if identified, be treated successfully.

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The 2007 PANDORA Patient’s Conference: PART I: Politics, Advocacy and the Media, Dr. Teitlebaum and D-ribose, Ask the Experts by Cort Johnson

The patient conference was an overwhelming success. It has always been a kind of poor sister to the professional conference but this time with its strong program and top-notch speakers the patient conference was a success in and of itself. According to people who’d been to the patient conferences in the past the attendance for this one was double or triple that of the preceding conference. The credit for this success must go to Marly Silverman, Rebecca Artmann and the rest of the P.A.N.D.O.R.A.

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