parvofighter
Senior Member
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XMRV International Advocacy Strategy
Some of us have been discussing the opportunity and urgency for the ME/CFS community to join forces with other patient groups internationally to get action on XMRV. The thinking is that - by the very nature of ME/CFS - we are indeed limited in terms of what advocacy we can do. That said, we share a common purpose with other groups affected by XMRV (eg. prostate cancer, autism Gulf War Illness) - even if there might be subtle genetic differences in the virus across diseases and/or countries. What we DO know is that XMRV replicates relatively slowly, and hence for the most part we are dealing with a relatively (genetically) stable virus. And we are all crying out for XMRV diagnostics and safe, effective treatment. Together, we could be powerful. (See our discussion on the Gulf War ME/CFS thread @ http://www.forums.aboutmecfs.org/showthread.php?t=1850&page=2 )
A suggestion was made that we start up a Facebook page as an international XMRV advocacy hub, and then break that down into separate countries. That way, say, Canadian XMRV advocates from prostate cancer, cervical cancer, autism, and Gulf War Illness (to name just a few) could join forces to make change for Canadian patients. Other countries could learn from best practices, and thereby accelerate XMRV care in their country.
This is where we need your help:
Straw-Man: First draft of an open invite re: XRMV International Advocacy Strategy
A New Day for Neuro-Immune Diseases and Cancer
October 8th heralded a new era for patients with Neuro-Immune Diseases and cancer with the publication in the prestigious journal Science of a stunning link between Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and the retrovirus XMRV. The astonishingly nimble Whittemore Peterson Institute for Neuro-Immune Disease - on a shoestring budget - cobbled together an illustrious Whos Who of researchers to achieve this groundbreaking find: The Cleveland Clinic, and the National Cancer Institute. The newswires exploded with the news: New York Times; Wall Street Journal; LA Times; Reuters; MSNBC to name just a few. The U.S. Department of Health & Human Services formed an interagency Blood XMRV Scientific Research Working Group on XMRV, collaborating with multiple agencies including the National Heart, Lung and Blood Institute and their Retrovirus Epidemiology Donor Study (REDS). A three-stage approach was announced addressing standardization of XMRV testing; determination of the prevalence of XMRV; and research on XMRV impacts. Now we wait for an imminent announcement on whether our blood supplies have been contaminated by a cancer-causing retrovirus: XMRV.
The pace of uptake of this research has been astonishing. Retrovirologists around the world have initiated dozens of research projects to explore XMRV and its relation to disease: prostate cancer; Gulf War Illness; cervical cancer; autism; atypical MS; Niemann-Pick type C Alzheimers to name just a few. In November, the renowned Cleveland Clinic convened 75 prominent retrovirology researchers to discuss XMRV research. Internationally, 70 Spanish specialists convened in Madrid to discuss their National Retrovirus Registry and the implications of the XMRV discovery.
Accelerating availability of XMRV testing, research, and care
Many ME/CFS patients have had this devastating NeuroImmune disease for 10, 20, even 30 years and more. Weve lost friends, family, careers, hobbies our lives. XMRV diagnostics and treatment cant come soon enough. HOW can we accelerate adoption of XMRV science? How can we rapidly infuse our respective governments with a sense of urgency on this issue?
Finding our Voice
Perhaps the #1 thing ME/CFS patients can do is to find our voice. We need to develop a coherent message and effective public relations strategy that demands swift and decisive redress for these decades of medical neglect. Many patients are home or bed-bound, and have lost their support systems. Few of us are healthy enough to become vigorously involved in advocacy other than through our online efforts. Our ME/CFS patient organizations are often supported by volunteer patients who also have limited capacity to advocate for our cause. But we are not alone.
Other patient groups
With one astonishing research publication, the Whittemore Peterson Institute has super-sized our patient community to include other potential XMRV-affected Neuro-Immune diseases (in alphabetical order):
Together, these patient organizations represent a powerful lobby for swift XMRV diagnosis and care. We can help them. And they can help us.
In the U.S., ME/CFS is still considered an Orphan Disease, and patients may therefore benefit from Orphan Drug legislation which can enable biotechnical research, and speedy access to therapeutics. But regardless of our particular Neuro-Immune disease, or our country, we all share a common need for SPEED. For many of us, decades of our lives have been lost to medical neglect. XMRV must be raised high on the political radar in each of our countries. Together, we can do this.
An Invitation to Join Forces
This is an invitation for us to join our voices, and to fight with a common purpose. This is not meant to supplant the efforts of our individual patient organizations. We need them to further our unique needs. But this proposal is that we join forces in our areas of XMRV crossover. Specifically, we share the same urgency for:
An international discussion forum, website, and Facebook page could allow diverse patient groups potentially affected by XMRV to join forces and then to exert powerful influence together, on their respective national governments, research institutions, and private sector. A central, global hub could serve to share international best practices in XMRV advocacy, so that others might leap-frog their efforts. In this way for example, XMRV advocates in France could share with their government that Spain has a National Retrovirus Registry, and has already had a meeting of the top retrovirologists, addressing XMRV. Advocates in Canada could point to the U.S. meeting of 75 retrovirologists on XMRV, and demand similar action in Canada. Gulf War Illness veterans from the UK could learn of political fast-tracking to address this issue in the U.S. Templates could be provided on the international sharing site, such as letters of invitation to prostate cancer advocacy groups; strategy pointers for dealing with the media; success stories, etc.
National Advocacy
Each national page could provide specific links and contacts for the key patient organizations potentially affected by XMRV in that country. For example the National Page for Canada might have contacts for:
A To-Do list could be created for each country, identifying areas in which patient advocates could contribute. Letters to the media. Invitations to patient organizations to join forces.
Keeping it Simple
Bottom line, if we build critical mass stick together - within the XMRV patient community, we could do great things quickly. We could ensure that successes in one country are swiftly shared with other countries - for the betterment of all XMRV patients.The key would be to identify the areas in which we share a common purpose and to stick to, and collaborate on those. Again, we dont want to re-invent the wheel. But we sure could use some turbo-boost to make XMRV diagnosis and treatment a reality SOON. Together, we might just do this.
Let the good times roll!
Some of us have been discussing the opportunity and urgency for the ME/CFS community to join forces with other patient groups internationally to get action on XMRV. The thinking is that - by the very nature of ME/CFS - we are indeed limited in terms of what advocacy we can do. That said, we share a common purpose with other groups affected by XMRV (eg. prostate cancer, autism Gulf War Illness) - even if there might be subtle genetic differences in the virus across diseases and/or countries. What we DO know is that XMRV replicates relatively slowly, and hence for the most part we are dealing with a relatively (genetically) stable virus. And we are all crying out for XMRV diagnostics and safe, effective treatment. Together, we could be powerful. (See our discussion on the Gulf War ME/CFS thread @ http://www.forums.aboutmecfs.org/showthread.php?t=1850&page=2 )
A suggestion was made that we start up a Facebook page as an international XMRV advocacy hub, and then break that down into separate countries. That way, say, Canadian XMRV advocates from prostate cancer, cervical cancer, autism, and Gulf War Illness (to name just a few) could join forces to make change for Canadian patients. Other countries could learn from best practices, and thereby accelerate XMRV care in their country.
This is where we need your help:
- Firstly, what do you think of this idea?
- Can someone set up an XMRV International Advocacy Strategy page on Facebook for us? (I have no clue how!). Can this be split into countries? Can you folks suggest a better name for it that every one will "get"?
- I've done a Straw-Man outline of what could be on the intro for this Facebook page. (This would still need to be further edited so it speaks to ALL patient groups.) Comments? Edits? Other?
Straw-Man: First draft of an open invite re: XRMV International Advocacy Strategy
A New Day for Neuro-Immune Diseases and Cancer
October 8th heralded a new era for patients with Neuro-Immune Diseases and cancer with the publication in the prestigious journal Science of a stunning link between Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and the retrovirus XMRV. The astonishingly nimble Whittemore Peterson Institute for Neuro-Immune Disease - on a shoestring budget - cobbled together an illustrious Whos Who of researchers to achieve this groundbreaking find: The Cleveland Clinic, and the National Cancer Institute. The newswires exploded with the news: New York Times; Wall Street Journal; LA Times; Reuters; MSNBC to name just a few. The U.S. Department of Health & Human Services formed an interagency Blood XMRV Scientific Research Working Group on XMRV, collaborating with multiple agencies including the National Heart, Lung and Blood Institute and their Retrovirus Epidemiology Donor Study (REDS). A three-stage approach was announced addressing standardization of XMRV testing; determination of the prevalence of XMRV; and research on XMRV impacts. Now we wait for an imminent announcement on whether our blood supplies have been contaminated by a cancer-causing retrovirus: XMRV.
The pace of uptake of this research has been astonishing. Retrovirologists around the world have initiated dozens of research projects to explore XMRV and its relation to disease: prostate cancer; Gulf War Illness; cervical cancer; autism; atypical MS; Niemann-Pick type C Alzheimers to name just a few. In November, the renowned Cleveland Clinic convened 75 prominent retrovirology researchers to discuss XMRV research. Internationally, 70 Spanish specialists convened in Madrid to discuss their National Retrovirus Registry and the implications of the XMRV discovery.
Accelerating availability of XMRV testing, research, and care
Many ME/CFS patients have had this devastating NeuroImmune disease for 10, 20, even 30 years and more. Weve lost friends, family, careers, hobbies our lives. XMRV diagnostics and treatment cant come soon enough. HOW can we accelerate adoption of XMRV science? How can we rapidly infuse our respective governments with a sense of urgency on this issue?
Finding our Voice
Perhaps the #1 thing ME/CFS patients can do is to find our voice. We need to develop a coherent message and effective public relations strategy that demands swift and decisive redress for these decades of medical neglect. Many patients are home or bed-bound, and have lost their support systems. Few of us are healthy enough to become vigorously involved in advocacy other than through our online efforts. Our ME/CFS patient organizations are often supported by volunteer patients who also have limited capacity to advocate for our cause. But we are not alone.
Other patient groups
With one astonishing research publication, the Whittemore Peterson Institute has super-sized our patient community to include other potential XMRV-affected Neuro-Immune diseases (in alphabetical order):
- Autism
- Atypical MS
- Cervical Cancer
- Gulf War Illness
- Irritable Bowel Syndrome
- Lyme Disease
- Multiple Chemical Sensitivity
- Niemann-Pick Type C Alzheimers
- Prostate Cancer
Together, these patient organizations represent a powerful lobby for swift XMRV diagnosis and care. We can help them. And they can help us.
In the U.S., ME/CFS is still considered an Orphan Disease, and patients may therefore benefit from Orphan Drug legislation which can enable biotechnical research, and speedy access to therapeutics. But regardless of our particular Neuro-Immune disease, or our country, we all share a common need for SPEED. For many of us, decades of our lives have been lost to medical neglect. XMRV must be raised high on the political radar in each of our countries. Together, we can do this.
An Invitation to Join Forces
This is an invitation for us to join our voices, and to fight with a common purpose. This is not meant to supplant the efforts of our individual patient organizations. We need them to further our unique needs. But this proposal is that we join forces in our areas of XMRV crossover. Specifically, we share the same urgency for:
- Credible XMRV diagnostics;
- Fast-tracked research on XMRV;
- Access to clinical trials for XMRV therapeutics; and
- Access to safe, effective therapeutics as they become available.
An international discussion forum, website, and Facebook page could allow diverse patient groups potentially affected by XMRV to join forces and then to exert powerful influence together, on their respective national governments, research institutions, and private sector. A central, global hub could serve to share international best practices in XMRV advocacy, so that others might leap-frog their efforts. In this way for example, XMRV advocates in France could share with their government that Spain has a National Retrovirus Registry, and has already had a meeting of the top retrovirologists, addressing XMRV. Advocates in Canada could point to the U.S. meeting of 75 retrovirologists on XMRV, and demand similar action in Canada. Gulf War Illness veterans from the UK could learn of political fast-tracking to address this issue in the U.S. Templates could be provided on the international sharing site, such as letters of invitation to prostate cancer advocacy groups; strategy pointers for dealing with the media; success stories, etc.
National Advocacy
Each national page could provide specific links and contacts for the key patient organizations potentially affected by XMRV in that country. For example the National Page for Canada might have contacts for:
- 3 national and 6 regional Autism groups;
- 2 national Atypical MS groups;
- etc, etc.
A To-Do list could be created for each country, identifying areas in which patient advocates could contribute. Letters to the media. Invitations to patient organizations to join forces.
Keeping it Simple
Bottom line, if we build critical mass stick together - within the XMRV patient community, we could do great things quickly. We could ensure that successes in one country are swiftly shared with other countries - for the betterment of all XMRV patients.The key would be to identify the areas in which we share a common purpose and to stick to, and collaborate on those. Again, we dont want to re-invent the wheel. But we sure could use some turbo-boost to make XMRV diagnosis and treatment a reality SOON. Together, we might just do this.
Let the good times roll!
