‘Chasing’ ME/CFS Research Dollars: the Big Chase Facebook Contest Begins

May 18, 2011

Posted by Cort Johnson

The Chase Community Giving Contest for CFS: WPI and CAA researchThe regular season is over – it’s playoff time for the Chase Community Giving Contest for large non-profits…..time to win some BIG MONEY for CFS research.This is a unique opportunity. Increasing govt funding for ME/CFS has been agonizingly difficult given the negative attitudes towards ME/CFS and it’s pretty darn clear, with the NIH suffering significant cuts this year, that funding is not going to increase significantly this year or the next. Given the smaller pot of funds available now, winning grants -always a difficult task for any CFS researcher – is going to be more difficult than ever.But Chase Community Giving (funded by JP Morgan Chase) has given CFS research a kind of life line; a chance to win some big money in a time of dearth and to put that money directly into the hands of excellent researchers. Plus there’s no one to convince, no office to call, no one to flash any stats at..all it takes is voting on Facebook….and spreading the word.

We’re talking about major inputs of funds into these organizations. Based on the prior voting the WPI could bring in $200,000 – a 20-30% increase in their research budget. The CAA would bring in $25,000, a nice chunk of change, in itself but they could easily do much better.

The contest begins May 19th and lasts until May 25th.

How To Vote?

Since the contest takes place on Facebook you need a Facebook account to vote.

  • I do not have a Facebook Account - go to www.facebook.com and quickly create a page. Since you must ‘like’ Community Chase Giving first in order to vote go to Community Chase’s Facebook page http://apps.facebook.com/chasecommunitygiving and click on the ‘Like’ button. Now use links below to vote.
  • I have a Facebook Account But Have Not Voted Before – You must ‘like’ Community Chase Giving first in order to vote. Go to http://apps.facebook.com/chasecommunitygiving and click on the ‘Like’ button. Now use the WPI and CAA links below to go to their Chase Pages to vote.
  • I have a Facebook Account And Have Voted Before - go to the URL’s below and vote!

The Organizations

The WPI – the WPI’s discovery of XMRV in the blood of people with ME/CFS has spurred more research and interest in CFS than any other in history. Prior to the XMRV discovery the WPI was doing ground-breaking work in pathogen detection and immune functioning. A recent paper on immune signatures indicated the WPI was able to detect dramatic differences in cytokine levels – a startling finding that could promise much. This summer the WPI will open the largest and most sophisticated ME/CFS clinic in existence. They are a natural choice for people with ME/CFS.

The CFIDS Association of America – love them or hate them for their work in other areas its clear that the CAA has funded potentially ground-breaking research work into ME/CFS. The CAA’s ‘star’, Gordon Broderick turned a $100,000 CAA grant into a 4 1/2 million dollar NIH/DOD grant to study the effects of exercise on immune and nervous system functioning. Both Dr. Light, Dr Shungu and Dr. Huber were able to turn CAA seed money into rare NIH grants to study aberrant receptor functioning, mitochondrial problems in the brain and reactivated endogenous retroviruses in ME/CFS.

Other researchers under the CAA’s umbrella are doing cutting edge work in Epstein-barr virus, identifying blood vessel problems and characterizing the ‘flora’ of the largest immune reservoir in the body – the gut. The CAA is primarily a research organization now…if you believe we need more money for innovative research into the causes of ME/CFS – voting for them, in my opinion, is a no-brainer…

7 comments

{ 7 comments… read them below or add one }

upnorth May 19, 2011 at 11:09 am

Done.
I hope they both win and do good things with the money that help patient SOON.

Reply

cort May 19, 2011 at 7:28 pm

ME too…we vitally need more research!

Reply

John May 22, 2011 at 8:51 am

Who are the patients in Dr. Broderick’s exercise study going to be? Longtime CFS patients or the prolonged recovery from mono patients that he has been studying (and who very well might get better all by themselves)?

Reply

Cort Johnson May 22, 2011 at 9:47 am

:) . I like that because it does seem that people who get infectious mononucleosis as adolescents and then get CFS do have a ‘disturbing’ (:)) tendency to get well over time..

These will be longterm CFS patients provided, I would imagine, but don’t know, by Dr. Klimas…I believe, but don’t know, that she is part of the study.

Reply

upnorth May 22, 2011 at 1:01 pm

John,
I know people who have had CFS/M.E. for almost a decade (me included) triggered by mono. We deserve to be studied and legitamately have CFS/M.E. I got mono at 32 and was told I’d recover in 4-6 weeks….nine years and counting.

Reply

John May 23, 2011 at 7:10 am

Upnorth, I agree that if a person has CFS for a long time and doesn’t get better then they deserve to be studied. I was just referring to the quite large percentage of individuals who have a prolonged recovery from mono, which once this recovery hits the 6-month mark they technically qualify as CFS, but more than 90% of whom get better within a year or two. This to me really raises questions as to the adequateness of the diagnosis. The Dubbo group in Australia, which has been studying such patients, recently published a paper which used such a cohort and which stated that reactivated herpes virus infections don’t play a part in CFS, for example, when reactivated herpes virus infections have long been shown to occur in CFS patients.

It’s a bit of a catch-22, you don’t want to wait forever to start studying people but you also don’t want to study people who are going to get better shortly and then generalize the findings to patients who have been ill for decades.

Reply

upnorth May 23, 2011 at 11:41 am

Do 90% get better within a year or two? Oh, yes, I guess that fits with the Dubbo study. But still, 10% of people remaining ill from EBV is pretty big – and so many people I know had mono as a trigger. I think it’s worth know WHY some of us just don’t recover and what does that path look like right from the beginning?

I think that EBV isn’t understood well enough yet. Some research seems to link it to MS, certain cancers etc. What does a truely dormant EBV look like vs., lets say, a reactivated one?

The issue really is more RESEARCH money and more “GOOD” “BIOLOGICAL” research of all the subgroups (infection trigger, insideous, logitudinal studies that catch patients at the beginning and studies of long-term patinents….I scoff at none of it if it’s good. I’m actually near the end of my tether with this illness. I’m tired of waiting and being ill while governments, the general public and most the medical field continues to dismiss this illness.

Reply

Leave a Comment

Previous post:

Next post: