I don't know exactly how to explain how far Europe is still behind. Not only is current research not sufficiently exposed in the media, even many patients still do not know there even MIGHT be a biomedical cause for their illness. They do not know there have been many research projects already. Entire countries have been indoctrinated into the psychological beliefs and it will take quite an effort to change this around. But it WILL pay off, by increasing awareness around the world more funds will become available for biomedical research. (your motivation to sign...) We hope and pray that research trials will be accessible in all countries soon, we hope for another press release by WPI or an international Health Organization and for advocacy to further unite. << MORE >>

        

Press Release from WPI

Viral Immune Pathology Diagnostics Introduces New Test for XMRV Patients and Clinicians
-Net proceeds from test dedicated to further WPI research

RENO, Nev. – The Whittemore Peterson Institute (WPI) has recently published a research study
revealing the prevalence of XMRV in patients with Myalgic Encephalomyelitis/Chronic Fatigue
Syndrome, ME/CFS or what has most recently been called, X associated neuro-immune disease,
(XAND). In response to an overwhelming request for a diagnostic test for XMRV, WPI has temporarily
agreed to allow Viral Immune Pathology Diagnostics (VIP Dx) to begin offering the identical tests that
have been extensively validated using the same technology developed by Drs. Lombardi and Mikovits
and their colleagues as reported in Science.

VIP Dx is a small state certified laboratory in Reno, Nevada that was formed in response to the
September 11, 2001 crisis which resulted in the cessation of blood sample shipments between the United
States and Europe. Faced with the loss of important lab tests impacting patients with neuro-immune
diseases, the Whittemore family made the decision to support the lab in Reno.
“Our family made it possible for the lab to not only continue delivering diagnostic tests to doctors, but
also help the WPI bring cutting edge biomarkers of disease to this field of medicine, such as the tests for
XMRV,” said Annette Whittemore, Founder and President of WPI. “Tests conducted for XMRV, and
other tests that support the diagnostic process in this field, will support the continuation of vital work at
WPI through our donation of all of our net proceeds.”

XMRV test acceptance commenced at VIP Dx this month. For more information about the XMRV test kit, visit www.vipdx.com.
Whittemore Peterson Institute

The Whittemore Peterson Institute for Neuro-Immune Disease exists to bring discovery, knowledge, and
effective treatments to patients with illnesses caused by acquired dysregulation of the immune system
and the nervous system, often resulting in lifelong disease and disability. The WPI is the first institute in
the world dedicated to neuro-immune diseases, integrating patient treatment, basic and clinical
research and medical education.

        

How much more good could have been done for the cause if that two hours each had been devoted to writing letters to the editor, letters to Congress begging for research funding, letters to the new head of CDC asking for legitimacy? Instead, it was wasted arguing semantics which doesn't change a thing for the patients who are suffering from it. And this is why CFS advocacy is in trouble, because there are too many activists hung up on semantics -- is it CFS, is it ME, is it ME-itis, is it ME-opathy? -- rather than getting down to the nitty-gritty that whatever the hell you want to call it, it's a problem. It's a big problem. It's a $26B problem in the US alone.<< MORE >>

Some people go into remission some people don’t. Obviously if you are not listening to your body, you’re over doing things when you shouldn’t be, you’re eating crap everyday, you’re negative then of course you’re not doing yourself any favours. Well I don’t do those things, I take really good care, I listen to my body and it’s been three & half years now and to no avail, no periods of remission or partial remission. I know that I am doing everything I can to take control but you know what no surprises, it’s not getting any better. I’m not getting worse and that’s what I have to hold on to, I’ve not entered the 25% of severe sufferers and hope I never will. I know why I’m not getting any better and it’s not because of something I am or am not doing. It’s because I have a disease that is not understood and therefore not being controlled, it has free reign of my body and does what it wants at its will. If you’ve gone into remission then I am really and truly happy for you, you should count yourself as lucky not some Guru. You should also recognise that there are many kinds of this illness so your type may not be like my type and once the truth is out we will know what each person is fighting and what we need to do for each one. I suspect that they will find that there are types that are progressive and kill, we sadly see evidence of that far too often, and there are types that are very mild and cause few problems at all. So please do not put us all in the same pot, you’re preaching to the converted but not all of us can be saved until the illness is fully understood. We have accepted that, isn’t it time you did too?<< MORE >>

Five Things You Should Never Say to Someone with Chronic Fatigue Syndrome

It is extremely difficult to suffer from an illness like chronic fatigue syndrome (CFS) both physically and emotionally.  While awareness has improved dramatically over the past 20 years, there are still many doctors and society in general who do not believe this debilitating illness is real.   If you have been fortunate enough to have a doctor, family and friends who believe you are truly ill, there are still many stereotypes and misconceptions surrounding CFS.

Chronic fatigue syndrome is a complicated illness that affects the brain and multiple areas of the body.   Some of ...<< MORE >>

Top 10 Causes had 2299 people on twitter vote for their favorite cause on Twitter. There were 53 amazing causes/charities recommended. Voting occured for a 3 week period from June 15 - June 30, 2009. Thank you to everyone who participated in the voting for BlueRibbonCampaingforME.org as a Top 10 Cause. According to the Top 10 Causes website: "@Top10Causes will now work hard to promote, raise awareness and support the new Top 10 Causes on Twitter via Twitter, Facebook, Blog, and this website. Our mission is, and always will be, to bring awareness to amazing causes/charities on Twitter. If one person finds the help they need, when they need it, through our awareness campaigns, we have succeeded." << MORE >>

Attempting a to complete it may illustrate some of the problems with it. You also have an opportunity to make your own comments at Q.19 and, of course, you could write to MP Des Turner as well if you choose. [People in other countries may be interested in following this because, although this is specifically about a service in the UK, the main treatments, Cognitive Behaviour Therapy (CBT) and Graded Exercise treatment (GET), are suggested universally]<< MORE >>

For nearly two years, the CFIDS Association of America has been working to effect a more robust research effort at CDC. In spite of these diligent ongoing efforts, the past two years of dialogue and public testimony has produced a 5-year draft plan from CDC that is substantially the same as what CDC has been reporting since 2006. Status quo. Groundhog day. Déjà vu. All over again.<< MORE >>

The health care system in Norway can not stand by and watch this situation continue. Establishing the ME/CFS-center at the Ullevål University Hospital is a step in the right direction, but the fact that the Health Directorate now is thinking about launching new guidelines (NICE) will lead to a situation where many patients with other diagnoses and other needs of treatment will be diagnosed with ME, making the situation worse. If one is willing to improve the situation for these patients, one must look away from criteria that includes heterogeneous groups of patients and not regards enough the specific characteristics of ME. Further, the diagnostic approaches must be improved by using the methods and tools able to define and differentiate the illness of these patients in such a precise way as possible.<< MORE >>