[FMS Global News0] Phoenix Rising: the Making a Difference Edition / Phoenix Rising Treatment Review Project Begins
Cort Johnson
Check out the Newsletter, the big new Phoenix Rising Project, and blogs and news from the last month
Newsletter
May is advocacy month for ME/CFS and this month we feature interviews with one of the few successful state ME/CFS organizations and the 'retiring' patient advocate on the CFSAC panel.Most states don't have a statewide CFS organization let alone one that puts on conferences, writes comprehensive ME/CFS manuals, provides high school and college scholarships, advises schools on pediatric issues and more. In short, the ME/CFS community in New Jersey has somehow managed to create a viable, productive state organization that has been able to influence state practices. How have they been able to do when so many others have failed? We take a look at that at
Next we turn to Rebecca Artman, a co-founder of PANDORA, the Miami NeuroendocrineImmune (NEID) Group attempting to build an NEID treatment and research center in New Jersey, and the patient representative on the CFSAC panel. In this interview Rebecca talks about her life with CFS, what its like being on the federal advisory committee for CFS (CFSAC) and how she attempts to make a difference within the confines of her illness (and sometimes outside of them).
http://www.aboutmecfs.org/Int/Artman.aspx
- Coming up soon with be an interview with Jennie Spotila, the past Chairman of the Board of the CFID's Association of America on the CAA.
Talking about making a difference. Phoenix Rising is starting a project that we think could make a b big difference for us all on the treatment end.
The Phoenix Rising Treatment Review Project
- This project is about fundamentally altering how we learn about the treatment possibilities in ME/CFS
Imagine being able to quickly find your ‘ME/CFS twin’-- someone who hasyour kind of ME/CFS, your test results and those same symptoms that you have, and learning what’s working for her/him (or not working for her/him)…and perhaps finding something new and helpful for yourself.
Imagine being able to quickly get an idea of which treatments work in ME/CFS and don’t work? Which treatments sometimes really, really work well and for which types of people? Which treatments are the most cost-effective and which give you little bang for your buck? Which typically cause a lot of side effects and which do not? That is what the Phoenix Rising Treatment Review project is about.
- This project is about understanding the ME/CFS Community as it’s never been understood before
Imagine being able to look at some of the central questions of the disorder such as the effects of acute versus gradual onset . How do men with ME/CFS differ from women? Are people diagnosed with one criteria different from those diagnosed with another one. What happens to patients as they age with this illness? How is someone who’s had ME/CFS for ten years different from someone who’s had for 1 year.
Imagine an ongoing ‘study’ of 1,800 or 2500 or 5000 ME/CFS patients that’s continually providing more and more detailed and discerning information on the ME/CFS.
Where we are: Right now we’re in an exploratory phase; we have the basic outlines of the project set - now we’re digging in and determining the details; what is useful and what is not, what is feasible and what is not. We have preliminary estimates on costs.
We would love to have your advice and suggestions. We'd like to hear from anyone who's interested what they think this should look like. Brain Fog alert, though! This is a complex multi-dimensional project. Besides general suggestions, we could, in particular, use advice from people with, IT, programming, health industry, statistics and web design skills.
After we sift through the suggestions and build a stronger knowledge base of what's required and where we want to go, we'll take it to the next level and contact ME/CFS researchers and other professionals for their opinions. Check out the PatientsLikeMe site for something somewhat similar.
A month from now we’re committed to having a strong working plan that we’ll start putting into action.
You can find the project in the Create A PatientsLikeUS ME-CFS Treatment Program Forum
- Please email me if you you're interested in contributing/would like to talk about it.
NEWS
- The news on XMRV continues to pour out. For quick takes on what's happening now check out the XMRV Buzz.
- The April Surprise on XMRV turned out to be a huge surprise after all with Dr. Peterson leaving the Whittemore Peterson Institute
- See Dr. Mikovits Chat's on XMRV for a long chat I had with her
- The Big UK CBT/GET Study that would have likely spelled doom for the next generation of patients there thankfully crashed and burned. Check it out in Not So Fine After All: the FINE study Crashes to Earth
- If you haven't seen the Phoenix Rising Video by Teejkay be sure to (and bring a hankie)
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Cort Johnson
Phoenix Rising - An ME/CFS Website at http://aboutmecfs.org.
Proudly affiliated with ME-CFS Community at http://ME-CFSCommunity.com
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Cort Johnson
Phoenix Rising - An ME/CFS Website at http://aboutmecfs.org.
Proudly affiliated with ME-CFS Community at http://ME-CFSCommunity.com
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