M.A.D (Making a Difference) About ME/CFS Group
The M.A.D. Group was formed in response to a potentially pivotal event that will occur
shortly; the Oct 29th/30th CFSAC meeting at which the CDC will present its Five Year plan for ME/CFS.
A Pivotal Event - This group is focused on producing a strong voice for change in the CDC's CFS research program
at the Oct. 29/30th CFSAC meeting. With patients, support groups and researchers
united in support of dramatic change at the CDC this meeting has the potential to become an epochal event in ME/CFS history.
Dr. Jason has called it the biggest event in 25 years. We intend to do our best to make it so.
We'll be discussing and outlining the different ways we can make a difference at
this pivotal moment. Physical participation at the meeting itself is not
required.
Here's the latest from the CDC:
- Their newest definition (Empirical Definition)
relegates the importance of post-exertional problems to near nothingness,
requires that patients have only a low level of fatigue to be classified as
having ME/CFS and adds emotional factors to the mix for the first time.
- That new definition added so many new 'CFS' patients
to the fold that CDC estimates of ME/CFS prevalence went up fourfold. Dr.
Leonard Jason showed it was easy for patients with major depression to be
misclassified with CFS using the CDC's new definition - suggesting that many of
those patients have emotional disorders.
- The CDC's big finding of the past few years - using
the Empirical definition - is that the rates of sexual abuse are
increased in ME/CFS patients.
- Despite the high disability rates Dr. Reeves has
recently stated that ME/CFS is not a disease or disorder at all but 'something'
that may lead to a 'real' disease at some point. He now refers to this 'thing'
using the term 'unwellness'.
- A CFID's Association investigation found that the
CDC paid a firm almost two million dollars simply to find patients for a
study - making this study already the most expensive ever in ME/CFS. The CDC has
ignored the CAA's claims of financial mismanagement for the past year.
- Both the CFID's Association of America, the
IACFS/ME and the CFSAC have called for Dr. Reeves to step down and the program
to be overhauled.
- Earlier this year agreeing that the program doesn't
collaborate well with the rest of the research field the Dr. Reeves promised to
hold an International Conference on ME/CFS treatment this summer- that
was the last we heard of it. His first promise was broken remarkably quickly.
Is this the kind of program you want to entrust your health to? If you're interested in making a difference in the biggest research program on
the planet please join this group.
The M.A.D. About
ME/CFS group is located on the
Phoenix Rising Forums. To join the group register for the Forums and then
click on the Community button on the menu bar running near the top of the
page. From there click on Social Groups to go to the M.A.D About ME/CFS
group or click here
to go directly to the group.
See you there!