May 2012

Posted by Cort Johnson

Where will we be in five years? ME/CFS professionals look into their crystal balls and give their iinformed guesses.

For the last article in the “20 Years Ago Today” Series celebrating the 20th anniversary of International Awareness Day, we asked ME/CFS researchers and professionals to have some fun and take a look in their crystal ball and hazard a guess as to where CFS will be on a variety of topics in five years.

We asked them 10 questions….told them comments were welcome and, if they had anything else to add, to let it rip…..

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Posted by Cort Johnson

(This was never going to be easy….ME/CFS has been ignored by every federal agency for over 2 decades and its going to take time and work to break down those walls.  Let’s send a message that we are no longer willing stand for being ignored…Thanks to Mary Dimmock, Bob Miller and others for standing up for  the possibility of equal treatment for ME/CFS and producing this. )

CALL FOR THE FDA TO HOLD A STAKEHOLDER MEETING – SECOND LETTER!

May 14, 2012

To All who took ACTION requesting THE FDA TO HOLD A STAKEHOLDERS MEETING for ME/CFS

THANK YOU!!

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Posted by Cort Johnson

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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Posted by Cort Johnson

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.… Read More

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Posted by Cort Johnson

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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Posted by Cort Johnson

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 years130,000 views - Sleepydust’s only video captures ME/CFS like none other.… Read More

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Posted by Cort Johnson

“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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Posted by Cort Johnson

Discuss this article on the forums

Written by Cort

We’re moving tomorrow! After much testing and evaluating we hope the transition will be as seamless as possible but in a move like this some glitches are probably inevitable. All you will need to do is login again (and click the stay logged in button, if you wish). Be prepared for a quite different look!

Why did Phoenix Rising Switch Forum packages (from Vbulletin to Xenforo)?

Xenforo is a new entry into the Forum software market. Developed by former lead Vbulletin developer, Kier Darby, after VBulletin was sold to a larger firm, Xenforo is what Darby believed VBulletin should have become.… Read More

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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

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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Posted by Cort Johnson

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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