Hi to you all,
I'm a patient and have something that is indeterminable between Fibromyalgia and ME/CFS (or perhaps both...).
I would ask you to please vote for the "Whittemore-Peterson Institute" in the following contest, to help them gain significant amount of funds for research. The "Whittemore-Peterson Institute" is a non-profit institute based in Nevada that was established by the parents of a girl who has ME/CFS for decades. It is an institute that is focused on exploring the causes and potential treatments for neuroimmune diseases. Naturally, it focuses currently mainly on ME/CFS, but they also study other neuroimmune diseases, including Autism (and Fibromyalgia, Gulf War Syndrome, atypical MS, chronic Lyme Disease etc.). Currently the institute does not get money, or enough money, from the government, and its work is based on donations - and due to lack of money they cannot study right now some things that they want to study. The institute is participating these days in the "Chase Community Giving" contest - a contest that it's winners win prizes that are between tens of thousands of dollars and 500,000 dollars. The contest is now at its second and final round, where the prizes are significant. Please, please vote for the institute, as the money recieved in this competition may help people with Autism too (not to mention that there are many ME/CFS patients who have autistic children - and that might mean that finding something about one disease can help patients with the other disease). In order to vote for the institute, you should have a facbook account (if you don't - you can open one for free, and you don't have to share your real details there) and then you shell do two very quick things:
1) Click on the following link and click the "like" button at the top of the page:
chasecommunitygiving.contextoptional.com/
2) Click the following link and then click "Vote & Share":
tinyurl.com/wpiround2
And that's it - you have voted. Another thing that would help tremendously is if you'd ask your friends, family, facebook friends, email contacts etc. to vote. So if you can - it might help a lot.
Some more about the Wihttemore-Peterson Institute (or WPI): Its target is to gain knowledge and find effective treatments for patients with neuro-immune diseases, such as ME/CFS, Fibromyalgia, Gulf-War Syndrome, atypical MS and Autism. What they are going to do is to open a practice there, with doctors carefully selected, and to use the knowledge gained by the doctors and patients, and the knowledge gained by basic research, to do "translational research" - turn it into things that you can use in the clinic - such as drugs and also biomarkers. In late 2009 the institute published a study in the most prestigous scientific journal in the world - "Science" - in which they found a retrovirus that was first found in 2006, named XMRV, in 68% of 101 ME/CFS patients, as opposed to 3.7% of 218 healthy people (controls). With additional tests they even showed that 98% of the 101 patients had evidence for infection with XMRV. Since then, there have been studies that did not find XMRV, in patients or controls, and a study by the NIH and FDA that found a very closley-related groups of viruses (named PMRVs) in 86.5% of ME/CFS patients, as opposed to 6.8% of the healthy controls.
XMRV is the third known human retrovirus - the other two are HTLV, which causes leukemia, lymphoma, and a neurological disease, and HIV, which causes AIDS. Before XMRV was found in the blood of ME/CFS patients, it was also discovered in tissues from prostate cancer patients (significantly more in patients than in controls). There is also some unpublished work (just the results are known) that shows a connection of XMRV to breast cancer. Other, very small studies (included a small number of patients), that are unpublished, have also showed a connection between XMRV and: Fibromyalgia, Autism an atypical Multiple Sclerosis, and I think that also Gulf War Syndrome. If XMRV causes diseases, there are four existing drugs, which are today used to treat HIV carriers, which have been shown to be effective in vitro (in the laboratory, "in a test tube") against XMRV - and also 4 medicinal compunds that are in develope for HIV and have been shown to be effective in vitro against XMRV. So, if XMRV is found to be the cause of a disease (or more than one disease), there is a good potential that patients would be able to get good treatments for their disease within the near future. It is very important for a disease like ME/CFS, which have no drug approved for, and is also improtant for other diseases that would be found to be caused by XMRV. There is some interesting data from an oncologist which has ME/CFS and was found some years ago to be sick with Chronic Lympocytic Leukemia: He got tested for XMRV (those tests are currently for research, and are not yet approved by the FDA), was found to be positive, and then started taking two antiretroviral drugs that were shown to be effective against XMRV in vitro. He experienced some relief in his symptoms, and his measurements (from blood tests) - both of ME/CFS and of Chronic Lympocytic Leukemia, got significantly better. You can read about it here, in a blod of another doctor who has ME/CFS, and she and her daughter (who also has ME/CFS) begun treatment with three antiretroviral drugs (shown to be effective against XMRV in vitro), and although none of those three people got healthy, they all feel significantly better:
treatingxmrv.blogspot.com/
Right now, the whole XMRV issue is in big debate, with scientists from both sides presenting their arguments - but what's important to know is that on the side that supports XMRV there are scientists with very big names - such as Dr. Francis Ruscetti, the discoverer of the first known human retrovirus, HTLV-1, and Dr. Harvey Alter, the discoverer of Hepatitis C and of Hepatitis C Virus. So, in spite of the debate - which is a big debate - there is a huge potential here, and the Whittemore-Peterson Institute is doing an enormously important work regarding XMRV, but the problem is that it is running out of money - they don't have money for many things that they would like to do, and that would help the dozens if not hundreds of millions of people around the world. Therefore, the prizes that they can win in this contest are important - and those prizes can make the difference in people's health.
So, you would help us a lot if you'd vote for the Whittemore-Peterson Institute, and you can also help yourself, since one of the interest areas of the WPI is Fibromyalgia. Anyway, millions and millions of patients around the wourld would be most thankful if you'd help.
Although the message I wrote might look as if I took it from somewhere - I did not. I am a patient. You wouldn't believe how many sick people can love scientists, when the scientists are doing everything they can in order to help them (and they can love them even much more when the scientists are not only trying, but also succeeding). It was said that "there are 17 million ME/CFS patients around the wrold, and they have all contacted Dr. Mikovits (which is the research director of the Whittemore-Peterson Institute)". I'll tell you, from my own experience: There are really many many many patients that contact her, mostly through email, and the amazing thing is that she answers everyone, in a personal way, and most of the times very quickly.
The people in the Whittemore-Peterson are truely angels. And for them to be able to do the best work possible, they need research money (because the tests, the equippment and everything cost a lot of money, which they currently don't really have)... ↓
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