The 20 Years Ago Today Series V: Still the ‘Yuppie Flu’

by Cort on May 16, 2012

This entry is part 5 of 5 in the series '20 Years Ago Today" Series

An Institute for all Americans….

Or Just Some?

The Department of Health and Human Services 2013 Budget proposal doesn’t mince words about whose health the Department, which oversees the NIH and CDC, is charged with protecting….

This Budget request represents the Administration’s priorities for guiding the Department of Health and Human Services (HHS) to enhance the health and well-being of all Americans.

But has  it? Government funded studies have been invaluable in documenting that the million people or so people with chronic fatigue syndrome in the U.S. have high rates of disability and cost the economy about $20 billion a year.Those are  major disease type figures but  has the DHHS listened to its own figures?… Read More

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The 20 Years Ago Today Series IV: 1992 and Now – What Have We Learned?

by Cort on May 14, 2012

This entry is part 4 of 5 in the series '20 Years Ago Today" Series

In the World – President George Bush made news by suddenly falling violently ill and doing  a face-plant into the lap of the  Japanese prime minister.  The European Union is formed (perhaps to break up 20 years later?) and a 12-year civil war ends in El Salvador.  Yugoslavia breaks up and the Bosnian war begins… Pope John Paul finally  lifts the edict of inquisition against Galileo and Princess Charles and Diana separate…

Meanwhile in CFS,  a retrovirus finding by Dr. Elaine Defreitas of Wistar the year before had generated enormous interest and efforts were underway to validate it.

The Year 1992

In this article we look at what happened to those 1992 findings and what they tell us about  ME/CFS research?  We took each finding and then went  20 years in the future.… Read More

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The 20 Years Ago Today Series III: the Most Influential Researchers of the Last 20 Years

by Cort on May 12, 2012

This entry is part 1 of 5 in the series '20 Years Ago Today" Series

Who’s made the most difference in the chronic fatigue syndrome research field? A measure called the ‘H-index’ attempts to determine the impact a researcher has had on a field based on how often his/her work is cited by others. Researchers publishing ‘seminal’ papers in highly read journals will do the best. The index does not measure who’s right..it measures who’s work is read and cited the most by other researchers. The higher the score the bigger the impact.

The index is not perfect; flaws have been pointed out but it does give us a good sense of who’s had the most impact in the CFS research field.… Read More

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The 20 Years Ago Today Series: ME/CFS Video’s Come of Age

by Cort on May 12, 2012

This entry is part 3 of 5 in the series '20 Years Ago Today" Series

There’s nothing like a video to arouse passion. ME/CFS videos really came of age  five years ago with the publication of Sleepydust’s ME/Chronic Fatigue video. That video, still her only one, has garnered over 130,000 views – far outpacing any others.

To celebrate 20 years since CFS International Awareness Day was created, here are the top 15 or so most watched CFS English speaking  video’. Some of the best are the latest, check out, for instance, GettingWellFromME’s recent series, with its fine production values.  At the end we have a video made for the anniversary today.

SleepyDust’s ME/Chronic Fatigue Syndrome Video

5 years – 130,000 views - Sleepydust’s only video captures ME/CFS like none other.… Read More

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The 20 Years Ago Today Series II: the ME/CFS Survey!

by Cort May 12, 2012
This entry is part 2 of 5 in the series '20 Years Ago Today" Series

“It was twenty years ago today…”

Check out our “20 Years Ago Today” survey celebrating the 20th Anniversary of International Awareness day. A wide-ranging (would you take Rituximab if you could get it for free?), sometimes quirky, (what was the most you ever spent on ME/CFS?), sometimes wishful (if you had $100 million dollars to spend on ME/CFS how would you do it?) look at ME/CFS, among other things, we ask where you were 20 years ago, where you are today and where you think you’ll be in the future.

Check out the “20 Years Ago Today Survey Here”….… Read More

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Cheaper Meds for ME/CFS:the Pandora/NeedyMeds Webinar

by admin May 6, 2012

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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ME/CFS Buzz: ‘Unrewarding’ Illness!, Brain ‘Zapper’, Treatment Primer on the Way and more… (May 2nd, 20102)

by admin May 2, 2012

RESEARCH NEWS

A Very Unrewarding Ilness: CDC Study Suggests Reward Center of the Brain is Rather Quiet in CFS

Chronic fatigue syndrome does appear to still be something of a hot media item…The latest CDC study made the news before it was published or even presented at a big conference. (This study was actually presented at the IACFS/ME Conference but somehow it didn’t make it out to the news wire there :) )

This study found that blood flows to the basal ganglia, a part of the brain involved in both motor activity and reward (what a combination)…was significantly reduced in people with ME/CFS during a card game.… Read More

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Online Memorial Service For Patrick Kelly (May 6th)

by Cort May 1, 2012

Funny, charismatic and often an inspiration to others, for almost two decades Patrick battled an illness his doctors couldn’t fix and his country has essentially ignored.  Patrick was, by all accounts, what doctors might call a ‘good’ ME/CFS patient; he worked hard on the physical side, trying the different protocols available, and on the mental side-  to glean what goodness he could out of a life  spent wrapped in illness. In the end, though, the disorder proved to be too much.

A straight A college student and successful entrepeneur prior to becoming ill Patrick’s death was a sobering reminder  that talent and gifts are no bulwark against the devastation this disorder can cause.… Read More

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WPI Back on Track? University Gives WPI Strong Show of Support

by admin April 29, 2012

“We’re excited to be in this partnership with the WPI”
Dr. Ken Hunter, University of Nevada Reno

The Whittemore-Peterson-Institute ( WPI) has been through a brutal stretch of bad news lately; first their aggressively defended XMRV discovery didn’t work out, then the firing of their lead researcher, Dr. Mikovits, left them under attack from her supporters, then her alleged theft of research materials embroiled them in legal matters and then Harvey Whittemore was hit with a lawsuit alleging misuse of funds, some involving the WPI (the WPI counter-sued.) One began to wonder if the University of Reno was beginning to regret being associated with such a hot-button Institute.… Read More

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