Phoenix Rising: the Making a Difference Edition / Phoenix Rising Treatment Revi

[Guest guest]

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

 

_Making A Difference: the New Jersey Chronic Fatigue Syndrome

Association_ (http://www.aboutmecfs.org/Adv/NewJersey.aspx)

 

 

 

 

 

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_

(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 _ (http://patientslikeme.com/) 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

_http:/

/www.forums.aboutmecfs.org/forumdisplay.php?73-Create-A-PatientsLikeUs-ME-CFS-Tr\

eatment-Program-Project_

(http://www.forums.aboutmecfs.org/forumdisplay.php?73-Create-A-PatientsLikeUs-ME\

-CFS-Treatment-Program-Project)

* 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. _

(http://www.aboutmecfs.org/Rsrch/XMRVBuzz.aspx)

* * _The April Surprise on XMRV _

(http://blog.aboutmecfs.org/?p=1489) turned out to be a huge surprise after all

with Dr. Peterson

leaving the Whittemore Peterson Institute

* See _Dr. Mikovits Chat's on XMRV_

(http://blog.aboutmecfs.org/?p=1481) 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_

(http://blog.aboutmecfs.org/?p=1512)

* If you haven't seen_ the Phoenix Rising Video_

(http://blog.aboutmecfs.org/?p=1465) by Teejkay be sure to (and bring a

hankie)

 

 

 

 

 

 

--

Cort Johnson

 

Phoenix Rising - An ME/CFS Website at _http://aboutmecfs.org_

(http://aboutmecfs.org/) .

Proudly affiliated with ME-CFS Community at _http://ME-CFSCommunity.com_

(http://me-cfscommunity.com/)