SB_1108
Senior Member
- Messages
- 315
I realize that Phoenix Rising has enough drama right now but I thought I would change the subject and add some new drama. 
I would like to hear people's opinions on a new advocacy approach. I'm thinking of something similar to MillionsMissing but larger. I'm interested in reaching out to the other invisible illness communities about the idea of joining forces, specifically Lyme, Fibromyalgia, and Gulf War Syndrome (just to name a few).
I realize this is contentious for a number of reasons which is why I want some feedback. Can you think of some obstacles that we might encounter AND more importantly, how we could overcome these challenges?
For example, a common phrase that I hear from the Lyme community is "you probably don't even have ME, you have Lyme!" My response is... it's possible that there is some type of immune dysfunction keeping these infections active. The patient communities need to acknowledge the symptom overlap so we can advocate and guide research in the right direction.
Dr. Robert Naviaux hypothesizes that there are dozens of different stressers that can trigger a "cell danger response" and they are all just different paths to the same disease. People with the same core symptoms have the same metabolic abnormalities. It doesn’t matter whether the trigger was EBV, HHV6/7, Lyme, Enterovirus, organic solvents, a pesticide, or an industrial metal or solvent exposure. Once you develop these metabolic abnormalities, the same core symptoms are present.
Also Dr Ron Davis at Open Medicine Foundation's website says his research is "...designed to find biomarkers and effective treatments for ME/CFS and these findings should also provide insights into related diseases, such as fibromyalgia and Lyme disease."
Does anyone have any ideas about what might be the best way forward to unite these communities? Is it a physical protest? Is it the next generation of MillionsMissing? Ideally, the goal would be to make our invisibleness, more visible but we would also have to unite under some cause or demands.
I would like to hear people's opinions on a new advocacy approach. I'm thinking of something similar to MillionsMissing but larger. I'm interested in reaching out to the other invisible illness communities about the idea of joining forces, specifically Lyme, Fibromyalgia, and Gulf War Syndrome (just to name a few).
I realize this is contentious for a number of reasons which is why I want some feedback. Can you think of some obstacles that we might encounter AND more importantly, how we could overcome these challenges?
For example, a common phrase that I hear from the Lyme community is "you probably don't even have ME, you have Lyme!" My response is... it's possible that there is some type of immune dysfunction keeping these infections active. The patient communities need to acknowledge the symptom overlap so we can advocate and guide research in the right direction.
Dr. Robert Naviaux hypothesizes that there are dozens of different stressers that can trigger a "cell danger response" and they are all just different paths to the same disease. People with the same core symptoms have the same metabolic abnormalities. It doesn’t matter whether the trigger was EBV, HHV6/7, Lyme, Enterovirus, organic solvents, a pesticide, or an industrial metal or solvent exposure. Once you develop these metabolic abnormalities, the same core symptoms are present.
Also Dr Ron Davis at Open Medicine Foundation's website says his research is "...designed to find biomarkers and effective treatments for ME/CFS and these findings should also provide insights into related diseases, such as fibromyalgia and Lyme disease."
Does anyone have any ideas about what might be the best way forward to unite these communities? Is it a physical protest? Is it the next generation of MillionsMissing? Ideally, the goal would be to make our invisibleness, more visible but we would also have to unite under some cause or demands.
