Annette Whittemore, the Founder of the WPI, and the mother of a daughter of ME/CFS, appealed to all people with ME/CFS to vote for the CFIDS Association of America in the Chase Community Giving Contest and has requested that they also vote for two other organizations – and ask that they vote for us. This is an opportunity to propel all four organizations upwards.
As the competition moves along more charities are combining efforts. In the spirit of working together for patients, we’re asking for people to use any unused votes to help support the The CFIDS Association of America. Many have already voted for both and we thank you. Let’s make medical research and patients a priority
Perhaps nothing better illustrates the plight ME/CFS research is in than Dr. Koh’s presentation at the CFSAC meeting last month. Despite detailing high level meetings with Asst Sec. Health Dr. Wanda Jones, D, NIH Director Collins and Secretary of Health Sebelius and despite the appearance of Dr. Collins at two workshops on CFS and XMRV, ME/CFS funding will go on as usual and the State of the Knowledge Workshop on ME/CFS will not result in a grant opportunity for ME/CFS this year – as is customary.
Government Says No Again – The NIH’s budgetary problems are so big and its commitment to ME/CFS is so small that even, after all the media reports, and the endorsements for more funding from virtually ever important official and the recognition of how under-funded this disease is, the NIH cannot find a way to pluck 5 million dollars out of a $25 billion dollar budget for a grant for ME/CFS research this year. (It continues to do so for other disorders). Instead they will put off that grant at least until next year XMRV’s fate is decided.
That’s dangerous because if XMRV does not work out then much of the excitement about ME/CFS may die down. XMRV was what got us to the place where the Director of the NIH and of the entire Dept of Health and Services actually sit down and talk about ME/CFS. If XMRV fades then this new interest may fade as well.
Chase Says “Yes” – The Chase Community Giving program is so important because, at a time when the NIH is saying ‘No’….Chase is saying “Yes”. Chase can, if we support both organizations enough, provide the seed money the WPI and CAA need to develop projects that will get funded. The WPI turned a little money into gold when the XMRV discovery prompted tens of millions of research dollars to be devoted to it. The CAA did a similar thing when several esearchers were able to turn small CAA grants into full-fledged NIH studies costing millions of dollars.
Vital Research Efforts – In fact it’s remarkable how much of the important research into ME/CFS began in non-profits; take the WPI away and XMRV disappears; take the CAA away and Pacific Fatigues Lab’s repeat exercise, the Light gene expression, Shungu’s brain mitochondrial abnormalities and the Huber endogenous retrovirus studies all disappear.
Allies Not Competitors – As Annette noted the CAA and the WPI are allies in the fight against CFS – not competitors – and both fund vigorous, innovative research programs in a field that gets almost little help from the federal government. Both organizations are currently funding innovative research projects into immune abnormalities and pathogens in CFS that very well may dovetail together at some point.
At a time when each person with CFS in the US gets all of $3.60 spent on them for research we need every research dollar available to us. Please vote for the
and please vote for
and ask that they vote for the CAA and the WPI.