Posted by Cort Johnson ‘Where’s the Beef’ became a key catch phrase of the 1984 Presidential campaign but one wonders if the WPI is asking themselves the same thing today. They produced a major finding that got the feds to throw a substantial amount of money at XMRV none of which, thus far, has made to the WPI. The WPI
ContinueCategory: Advocacy
Advocacy issues in chronic fatigue syndrome (ME/CFS)
“CFS Patients Address the CDC” – Striking New Video
Posted by Cort Johnson Check out Dreambirdies striking new video from the Phoenix Rising Forums
ContinueThe Time is NOW For PANDORA
Posted by Cort Johnson PANDORA has been engaged in a month long contest on Facebook by Chase Community Giving. The top 200 charities will win $20,000 – an enormous amount of money for a CFS non-profit. As of 3 days ago PANDORA was at a solid 104th place. Now, with 21 hours to go, because of a last minute rush
ContinueOpen Pandora’s Moneybox – Vote in the Chase Community Giving Contest
Posted by Cort Johnson When I finally got what the Chase Community Giving Contest really is it made my jaw drop. What it is is easy money for non-profits – and lots of it – and in these difficult economic times that’s a godsend for nonprofits. Chase has deposited a boatload of money (5 million dollars) that it’s going to
Continue‘It’s All Academic’: How the Medical Research System Rewards Researchers Not Patients
Posted by Cort Johnson The NIH invests over $31.2* billion annually in medical research for the American people. NIH website There’s something fishy with the way the medical system works. Take this simple fact; from 1996-1999 the FDA approved 157 new drugs. From 2006 to 2009, not long after the NIH’s budget had more than doubled..the FDA approved only 74
ContinueEqual Pay/Equal Power/Equal….Research Funding – the ‘Campaign to End Pain in Women’ Begins
Posted by Cort Johnson The Problem – We know CFS patients can’t get any respect. We have solid data showing there are high rates of CFS prevalence (@1,000,000 people in the US), that CFS causes high economic losses (up to 20 billion dollar a year), and that it causes high rates of disability. In short we have data that demonstrates
ContinueThe CFSAC on Itself, XMRV, the CDC and More
Posted by Cort Johnson The main subject – the CFSAC Charter was not the most enthralling subject – but it is a critical topic if the Committee is going to make a difference and Dr. Wanda Jones should be congratulated for thinking strategically and devoting time to trying to get the Committee on more solid ground. Dr. Koh Arrives –
ContinueNot So Fine After All: the FINE Trial Crashes to Earth
Posted by Cort Johnson A million and a half dollars, two hundred fifty patients and seven years later the UK government’s best hope for locking in its twisted approach to ME/CFS permanently, fell to earth with a crash. UK ME/CFS patients, certainly aren’t out of the woods, but they can breathe a sigh of relief that they dodged a massive
ContinueFFC Fundraiser Is Over!
Posted by Cort Johnson The Fundraiser is (very quickly!) over. We raised $2650 in cash donations and $650 in software (to be delivered) in about a day and a half – a remarkable turnout. A big thank you to everyone who made the fundraiser such a success. We know the financial stresses that come with CFS and we very much
ContinueThe ‘Optimize Dr. Bateman’s Research’ Fundraiser
Posted by Cort Johnson The first ‘Official’ Phoenix Fundraiser will provide essential information infrastructure elements to Dr. Bateman that will assist her in her studies on XMRV with Dr. Light/Singh, on XMRV with Glaxo-Smith Kline, on muscle and other receptors with Dr. Light, on Ampligen with Hemispherx and other studies. etc. – from CBS, Cort Why Should We Help? Reason
ContinueAn East Coast WPI? Support the New Jersey NEID by Cort Johnson
Posted by Cort Johnson Marly Silverman and others at PANDORA and the Landford Foundation have big plans. She wants nothing less than to build the first NeuroEndocrineImmune Center for the research, treatment and education into diseases like Chronic Fatigue Syndrome, Fibromyalgia, Gulf War Syndrome, multiple chemical sensitivity and others in New Jersey. (Think the WPI’s Neuro-Immune Institute with the ‘Endocrine’
ContinueXMRV: the Urgency of Money
Posted by Cort Johnson In a recent article on RJC.com Dr. Mikovits came out swinging. Fights between researchers can get nasty but its probably rare that they veer into this kind of territory. After suggesting that the Imperial College group purposefully tried not to find the virus (!) Dr. Mikovits referred to the fact that the paper was paid for,
Continue