September 2012

A study suggests adolescents who come down with chronic fatigue syndrome after an infection may have an immune abnormality that allows pathogens to be activated.

Cytokine expression profiles of immune imbalance in post-mononucleosis chronic fatigue. Broderick G, Katz BZ, Fernandes H, Fletcher MA, Klimas NG, Smith FA, O’Gorman MR, Vernon SD, Taylor R. J Transl Med. 2012 Sep 13;10(1):191. [Epub ahead of print]

Broderick, Fletcher, Klimas, Vernon, Taylor… this big  NIH funded study was loaded with top ME/CFS researchers.  Similar to the Dubbo studies in Australia, the study followed people, in this case, adolescents, who came down with an infection (infectious mononucleosis), to see who came down with chronic fatigue syndrome and why. … Read More

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Two CFIDS Association projects win out over more than 100 other competitors and make it to the final round in the Sanofi Competition to fund medical breakthroughs

The CFIDS Association of America’s research efforts have been nothing if not innovative since Suzanne Vernon took over the organizations research helm about five  years ago.  Dr. Vernon has ‘smushed’ (:)) separate research projects together to form multi-layered ones, funded efforts on Drug repurposing and cajoled researchers somehow into doing complete metabiome and epigenetic analyses all on quite  limited funding.

The CAA has been adept at maximizing their limited resources but nowhere may they get more bang for their buck than in this years Sanofi Challenge.… Read More

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Rich Van Konynenburg’s generous support of the ME/CFS community will not be forgotten..

Long time chronic fatigue syndrome supporter and theorist, Rich Van Konynenburg died last night in his sleep. His wife Diana reported:

“There is no easy way to say this, and this message is very difficult for me to write. 

Rich died early this morning. It appears that he suffered a massive heart attack in his sleep. He did not have a history of heart disease, so this was sudden and quite unexpected. It doesn’t seem possible to me that Rich is gone. I am at a loss to express how profoundly I will miss him (I already do!)”

Rich Von Konynenburg was a unique figure.… Read More

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The ME/CFS community wins $30,000 for NIDA and Phoenix Rising in the two-week Chase contest

It looked like Phoenix Rising was toast; we had dropped from 86th on Sept 10th to 136th and then all the way to 174th and had a meager 40 vote cushion with a day and a half to go……and then the ME/CFS Community erupted – propelling us all the way up to 133rd and allowing us to win $10,000.  It was an amazing jump and we can’t thank the ME/CFS Community enough for your efforts.

NIDA’s story was less dramatic but in the end they were on the edge, too, at 87th place in the last day with just a 9 place cushion before they fell into the $10,000 slot.  … Read More

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In the next five hours NIDA will either win 20K or 10K

We  can’t thank you enough for the support you’ve given Phoenix Rising.  In one day we’ve rocketed up to 136th from 179th  - a rise we suspect is rather unprecedented :) :) . We’re tremendously honored by your support.

The big concern now is keeping the Neuro Immune Disease Alliance (NIDA) in the $20,000 category.  NIDA needs to be in the top 96 to win $20,000 and right now with they’re at 87th and things could go either way in what is easily the busiest day of the contest.

NIDA is the brainchild of two parents, Linda and Don Tannenbaum, whose daughter fell suddenly ill with ME/CFS when she was sixteen. … Read More

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 Hanging On For Dear Life….

With less than 15 hours to go in the Chase Contest Phoenix Rising asks for your help one more time!

Phoenix Rising is hanging on by its fingers and toes in the Chase Community Giving Contest.  Right now we’re at 163rd place and we need to place in the top 196 to win $10,000.  With about 15 hours to go we’re about 100 votes ahead of last place and we expect hundreds of votes to be cast on the last day of the contest. Last year 3 ME/CFS groups that were in the money the day before dropped out of it on the last day…We need your support!… Read More

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On the Brink!

Ever feel like you’re hanging on by your fingers and toes? That’s where Phoenix Rising is right now in the Chase Community Giving Contest. The good news is that we’re in 179th place and would win $10,000 if the contest ended right now. The bad news is that the contest ends tomorrow night at midnight and we’ve dropped almost 30 places in the last 3 days.

Yesterday there were over 100 votes separating us from the last place; tonight there are only 42…Last year 3 ME/CFS groups that were in the money the day before dropped out of it on the last day…The truth is that we’ve climbed a long way in the last two weeks but we really need a hand!… Read More

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Chase is giving lots of money away in their Facebook vote off extravaganza

Phoenix Rising is currently 155 on the Leaderboard with 913 votes, and any organisation in the top 196 wins $10,000. Yes, that’s a lot of money for relatively few votes.

Voting ends in a few days – this Weds 19th at Midnight (EST)

PR is hovering just 107 votes above the cut-off point for zero money. Voting speeds up as the deadline approaches and we will need a lot more votes to secure the $10,000. Every extra vote is crucial to securing that money.

To vote, go to Phoenix Rising’s page at Chase Giving and Vote

Note: Before you can vote, you will be asked to accept the Chase Giving app on your facebook page: it’s harmless enough and you can always delete it when the voting is over (facebook instructions on deleting apps).… Read More

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Posted by Cort Johnson

Phoenix Rising’s projects would contribute substantially to the ME/CFS community

In this series of blogs we’re going to focus on what ME/CFS organizations would do with their Chase winnings and we’re going to start with (naturally :) ) Phoenix Rising.

Phoenix Rising has many projects it could spend the Chase winnings on; it could make the Forum more accessible to the visually impaired, hire a crisis counselor to help those in need, revamp the website to make it more effective, create a Community Marketplace, etc. but we’re going to focus on two projects that fit together – the Rate A Physician and the Community Rising projects.… Read More

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Posted by Cort Johnson

Opportunity Knocks! 

The Chase Giving Contest is back and with it the opportunity to get cash-starved ME/CFS non-profits some real cash. All it takes is your vote and spreading the word for the next two weeks (Sept 6-19th). This, in the world of non-profits is a remarkably easy (if nerve-wracking) way to make money…
Over the past two years Phoenix Rising has played a key role in getting Chase to pump over $170,000 into ME/CFS non-profits coffers and now we and eight other organizations are in the contest. The Top 200 vote getters this year will win from 10K to 250K.… Read More
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Posted by Cort Johnson

By pairing up we can maximize our Bonus Votes and give ME/CFS organizations a leg up in the Chase Contest

If you’re not sure how to vote on Chase or if you don’t want to use the exchange please check out the blog coming just after this one…(This blog is out  of order purposefully so we could link to it from the next one)..

This blog explains Bonus Voting and sets up a Exchange we can use to get ME/CFS organizations more votes.

First some basics about Bonus Votes…if you know these already skip down to the Exchange..… Read More

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Posted by Cort Johnson

 

The Chase Community Giving Contest gives ME/CFS a chance at winning a significant amount of money

The Chase Community Giving Contest for non-profits will run from Sept 6th-19th.  In the past two years Phoenix Rising has poured time and resources into helping other ME/CFS orgs win over $170,000 and now, for the first time, we’re in ‘the chase’ (:)) and we’re excited to be there. The annual Chase contest provides a rare opportunity for ME/CFS organizations to pick up some easy money. 

Some History

2011 - Three ME/CFS non-profits; the IACFS/ME,  the ME/CFS KnowledgeCenter,  and the Mass CFIDS Association won 20k  in a contest that matched smaller non-profits against each other.

Read More

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