judderwocky
Senior Member
- Messages
- 328
A Collective Show of Force
http://xmrvaction.org/content/collective-show-force
I'm probably preaching to the choir on this:
The CFS/ME community has been pushed aside for many years. It goes without saying. On one hand the community has suffered greatly from deeply ingrained stigmas and misconceptions about the disorder and what it entails. These beliefs, deeply pervasive within the medical community, have made patient groups vulnerable to being pushed aside and ignored. On the other hand though... this is all changing.
XMRV has had a critical impact on the way in which patient groups perceive themselves. The mystery surrounding the disease has perhaps made it harder for a firm group identity to emerge. An individual with CFS is often times dissuaded from seeking medical help. The illness's mysterious origins, the difficulty in conveying this to those both inside and out of the medical community, has made the disease highly personal. Individuals often suffered alone, trusting but a few others with a secret they were told to be embarrassed about. Needless to say discovery of the “third pathogenic lympotrophic human retrovirus” has completely changed the internal perception of the CFS community. This change has been facilitated by online patient groups.
For many patients, these groups are the only place where they can find support and listen to people who have quietly endured the same symptoms they have. Now however these support groups are taking on a new role. As communities are becoming more aware of their marginalized status and the pathogenic nature of their condition, these communities are also becoming places of change. As perceptions of illness change, the political demands of these patient groups will begin to change as well.
As these changes ripple through our social networks I believe it is important to take a moment and develop our strategy. Now is the time when our communities need to band together under a common creed: we need a common set of goals and initiatives to set before our elected officials.
I believe that we should work to develop a plan that involves (at least) the following elements:
1)Equal Inquiry: A reasonable figure for research funding comparable to other infectious illnesses. The recent article in Aids Reviews “AIDS REV: A Third Pathogenic and Lymphotropic Human Retrovirus” suggests that XMRV could be one of the most prevalent viral infections worldwide. An annual research budget for CFS twenty to thirty times its current level would be a starting figure.
2)Changes to the Americans with Disabilities Act / SS : In reality these are two separate issues. There are many components to be addressed in each. A roadmap here is especially neccessary.
3)Healthcare and medical coverage – Many of us do not have any insurance and do not have a primary care physician. For many of us, that ended with our livelihood.
These are just a few things, but our community needs to collectively address them and define a unilateral inclusive work-plan.
http://xmrvaction.org/content/collective-show-force
I'm probably preaching to the choir on this:
The CFS/ME community has been pushed aside for many years. It goes without saying. On one hand the community has suffered greatly from deeply ingrained stigmas and misconceptions about the disorder and what it entails. These beliefs, deeply pervasive within the medical community, have made patient groups vulnerable to being pushed aside and ignored. On the other hand though... this is all changing.
XMRV has had a critical impact on the way in which patient groups perceive themselves. The mystery surrounding the disease has perhaps made it harder for a firm group identity to emerge. An individual with CFS is often times dissuaded from seeking medical help. The illness's mysterious origins, the difficulty in conveying this to those both inside and out of the medical community, has made the disease highly personal. Individuals often suffered alone, trusting but a few others with a secret they were told to be embarrassed about. Needless to say discovery of the “third pathogenic lympotrophic human retrovirus” has completely changed the internal perception of the CFS community. This change has been facilitated by online patient groups.
For many patients, these groups are the only place where they can find support and listen to people who have quietly endured the same symptoms they have. Now however these support groups are taking on a new role. As communities are becoming more aware of their marginalized status and the pathogenic nature of their condition, these communities are also becoming places of change. As perceptions of illness change, the political demands of these patient groups will begin to change as well.
As these changes ripple through our social networks I believe it is important to take a moment and develop our strategy. Now is the time when our communities need to band together under a common creed: we need a common set of goals and initiatives to set before our elected officials.
I believe that we should work to develop a plan that involves (at least) the following elements:
1)Equal Inquiry: A reasonable figure for research funding comparable to other infectious illnesses. The recent article in Aids Reviews “AIDS REV: A Third Pathogenic and Lymphotropic Human Retrovirus” suggests that XMRV could be one of the most prevalent viral infections worldwide. An annual research budget for CFS twenty to thirty times its current level would be a starting figure.
2)Changes to the Americans with Disabilities Act / SS : In reality these are two separate issues. There are many components to be addressed in each. A roadmap here is especially neccessary.
3)Healthcare and medical coverage – Many of us do not have any insurance and do not have a primary care physician. For many of us, that ended with our livelihood.
These are just a few things, but our community needs to collectively address them and define a unilateral inclusive work-plan.
