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
by admin on March 18, 2012
The recent blog on Hemispherx’s Ampligen study has been amended to take account of the fact that the study involved an analysis of data from a 1998-2004 study. The blog in its original state suggested that this was a new study done in response to the FDA’s 2009 concerns. That was not true. Hemispherx may have done a re-analysis of old data in an attempt to comply with some of the FDA’s concerns but it did not, at least in this paper, embark on a new study with new patients. My apologies for any misconceptions.… Read More
by admin on March 18, 2012
Short-take: Hemispherx provides added proof of Ampligens efficacy in ME/CFS and allays safety fears but is it enough?
Hemispherx has published a major study on the effects of Ampligen (Rintatolimod) on CFS. Ampligen has been under the gun since the FDA’s refusal to approve the drug in 2009, pending more study.
A Big Blow – In what journalist (and Hemispherx critic) Adam Feuerstein called a ‘staggering blow’, in Dec. 2009, the FDA told Hemipherx that it could not approve Ampligen’s use in ME/CFS until the following issues have been settled. Hemispherx needed to:
The FDA asked a lot for a small company when it asked for an expensive 300 person study and Hemipherx stock prices plunged 43% on the news.… Read More
by admin on March 6, 2012
As part of a treatment overview Phoenix Rising is documenting what has worked for individuals who have gotten well or nearly well. While recovery is not common it does happen and we want to find out how.
If you’ve recovered or have mostly recovered please give us your stories. If you know someone who’s recovered please let them know about this project (or give us their contact info and we will contact them.)
Neither your story or your contact information will be made public without your permission. Basic information (see below) about your recovery will be entered into a spreadsheet which will be made public. You can remain anonymous or use a pseudonym.… Read More
by admin on February 10, 2012
(Corrine continues her blog recounting her visits to and charting her progress with, Dr. Peterson, one of our most experienced practitioners. As a bonus she includes her “Picking Dr. Peterson’s Brain” section where he answers her’s and others questions about CFS.)
Summary to Date
“Life can be likened to a grindstone. Whether it grinds you down or polishes you depends on what you are made of.” Author unknown
Let me start with a summary of my last visit, August 2011 (for a summary of previous visits, refer to the complete August blog):
I’d been doing well – feeling less sick and more functional.… Read More
by admin on December 21, 2011
Chapter 4 of How to Be Sick – The Universal Law of Impermanence
There’s just no getting around universal laws. They’re like gravity – you cannot like gravity, you can protest against gravity, you can pretend gravity doesn’t exist but as soon as you roll out of bed there it is – gravity.
The Buddhist law of impermanence – that nothing is permanent – that everything changes – is like that. Is suggests that you can’t count on anything…and you really shouldn’t try because at some point it’s all going to disappear anyway. Your health, for instance, is going to disappear completely at some point.… Read More
by admin on December 20, 2011
I can promise we will be providing cutting edge research and care, and educating providers like never before.
Dr. Nancy Klimas
Dr. Klimas recently left the University of Miami to head up a new Institute dedicated to researching chronic fatigue syndrome (ME/CFS) and Gulf War Illness at Nova Southeastern University. Dr. Klimas worked at the Univ. of Miami for 27 years; they gave her a space and a platform for her ME/CFS research, and for that we must be grateful, but they were never an eager partner. Nova Southeastern University (NSU), however, sounds like it’s eager to make a difference in this field.… Read More
by admin on December 9, 2011
Last week a notice from the University of Miami stating that after 27 years Dr. Klimas’s doors at the University would close sent something of a shock wave through the ME/CFS community. The idea that a significant CFS researcher, physician and advocate had perhaps lost her academic base was more than disturbing – but that announcement turned out to be nothing but a prelude to the really big news; it turned out that University of Miami didn’t let her go at all – Dr. Klimas left them for greener, much greener pastures.
In fact Dr. Klimas was given an offer – to form a Neuro-Immune Institute at Nova Southeastern – that she couldn’t refuse.…
Read More
by admin on December 6, 2011
Corinne’s fifth blog of her visits to Dr. Peterson is her most comprehensive yet. First, an improving Corinne gives a summary of her work to date with Dr. P, then we get a blow by blow of her visit, and lastly the ‘Queen of Questions’ hits up Dr. Peterson with her long list of questions, and as always, he responds.
Let me begin with a summary of my first four visits with Dr. P.
June 2009: I traveled by RV (my husband drove) because I was partially bedridden and wanted to “stop and smell the roses” along the way.… Read More
