1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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The Chronic Fatigue Initiative and Interview with Mady Hornig
In a follow-up article to the recent IACFS/ME conference presentation in San Francisco, and after speaking at length with Dr. Mady Hornig, 'searcher' delves deeper into the impressive work being completed by the Chronic Fatigue Initiative, and focuses in on those cytokine results ...
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Cross-Disease Advocacy Groups - An Idea For more Effective Action

Discussion in 'Action Alerts and Advocacy' started by Hip, Jan 17, 2010.

  1. Hip

    Hip Senior Member

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    Many people with CFS/ME and Fibromyalgia will know about the present the Clash of Ideologies taking place over the discovery of the XMRV virus connection to CFS.

    On the one hand, you have the Wessely School influence, who perpetrate the ridiculous dogma that CFS/ME is "All in the Mind", in other words, that you accidentally made yourself critically ill, just by a few inadvertently pernicious thoughts that accidentally crossed your mind one day.

    On the other hand, there are those dedicated researchers who have realized that CFS/ME is generally caused by one or more infectious pathogens, and have dedicated much of their time and energies in trying to bring this insight into the scientific light of day.

    Most people with CFS, via their own personal experience of this condition, tend to support the infectious disease etiology for CFS. I certainly do.

    The thing is that, in the last decade or so, more and more common diseases, from multiple sclerosis to diabetes to cancer to arthritis, are being linked to viral and other microbial causes. It is quite likely that many other inexplicable sudden-onset medical conditions will follow the same infectious disease model, conditions such as anxiety disorders, anorexia nervosa, ADHD, autism, some type of depression, dementia, Alzheimer's, coronary and vascular diseases, many cancers, strokes, heart attacks, and thousands of others.

    So this present era should be a watershed in medical and scientific thinking, where the light finally dawns on us, and we realize that probably the MAJORITY of diseases have a viral or microbial underlying cause.

    In other words, the tide is turning now, and it is not just CFS/ME that is increasing being understood as an chronic infectious disease - so are many other disease of previously unknown etiology.

    What is needed now is a huge investment in researching, and hopefully eradicating, a whole array of diseases caused by microbial infection, not just CFS/ME.

    It would be far more efficient for CFS/ME researchers to team up with MS researches, diabetes researchers, arthritis researchers, etc, in trying to figure out how to tackle and eradicate the underlying microbial infections, and not just palliate the symptoms.

    Similarly, perhaps people with CFS should not isolate themselves from people with MS, diabetes, or any other microbially-casued disease, in their fight to bring to this understanding to politicians, and to the many doctors that are still in the scientific dark.

    We need to set up larger, "cross-disease" advocacy groups that might better throw their weight around, to impress upon the relevant decision makers and budget directors that A GREAT MANY DISEASES ARE LIKELY DUE TO A HIDDEN UNDERLYING CHRONIC INFECTION, not just CFS/ME.

    Only a very small budget is presently allocated to infectious disease research, compared to the money that goes into drug research, and into other areas of medical research. THIS MUST CHANGE! We need to fight the causes of disease AT SOURCE - that is, the viruses, bacteria, parasites, etc themselves. Then, in the long term, the huge healthcare costs that nations currently bear would fall dramatically, as these diseases are eliminated, and better human health emerges all round.

    So the question is, what can we in the CFS/ME and Fibromyalgia community do to team up with people with say MS (which is linked to both Epstein-Barr virus and HHV-6), or type 1 diabetes (which is linked to the enterovirus CVB4), and so where extra-advoacy weight this leads us all.

    And I mean ALL: although most of the human race do not realize it, the vast majority of serious and minor diseases that more or less everyone is or will be afflicted by, are likely caused by infectious microbes.

    This, then, is an issue that, in many ways, is more important than climate change.

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