Friday, December 6, 2013

Time For A Patient Revolution!

Time For A Patient Revolution!

Simon McGrath begins a series of advocacy related posts arguing that a
badly broken medical system that reflects institutional desires more
than patients needs is ripe for a 'Patient Revolution'.

A medical community that has virtually ignored ME/CFS is exhibit A of
this, of course, but Simon suggests the internet is spawning a medical
revolution in which patients voices cannot be ignored, and
demonstrates out how this trend is impacting ME/CFS for the better in

Time For A Patient Revolution!

Thursday, December 5, 2013

California -- Apply as OES Disability Representatives

Please circulate to your contacts in California....
N.B., when you click on the application link, the webpage will come up "navigation cancelled", but if you wait a bit, you'll get a pop-up to download the application.
Sent: 12/5/2013 11:37:16 A.M. Pacific Standard Time
Subj: APPLY TODAY! Governor Seeks Disability Representatives for Workgroups
APPLY TODAY! Governor Seeks Disability Representatives for Workgroups

Dear Community Partners:

I am pleased to announce the California Governor's Office of Emergency Services (Cal OES) application process to integrate disability representatives on Emergency Function (EF) workgroups. Each EF is led by a State Agency and is designed to bring together discipline specific stakeholders to collaborate and support all phases of emergency management: prevention, preparedness, response, recovery, and mitigation. Therefore, we are expanding the California EF workgroups to include representatives from the disability communities. 

As background, Senate Bill 1451 (Kehoe, Chapter 600, Statutes of 2006) was enacted requiring the Cal OES Director to appoint representatives from the disability communities on the evacuation, sheltering, communication, recovery, volunteer and other pertinent Standardized Emergency Management System (SEMS) committees, as well as the SEMS Technical Working Group. Although most specialist committees have been dissolved over time due to the implementation of EF process, I embrace the purpose and intent of SB 1451 to include the expertise and experience of the disability communities. The bill requires that representatives should be, to the extent practicable, from the following groups:

1. People who are blind and/or have low vision

2. People with other sensory needs, such as deaf and hard of hearing

3. People with cognitive/intellectual disabilities

4. People with physical disabilities

Attached is the application to complete, as well as additional information on the EF?s. Please share this information with anyone who might be interested in applying. We would appreciate receiving applications no later than Friday, December 20, 2013, and plan to assign representation in January 2014. Thank you in advance for your assistance.

If you require more information or assistance in this matter, please contact Richard Devylder, Office for Access and Functional Needs at (916) 845-8981 or email at:




Download link for Letter: Community Letter Emergency Functions

Download link for Application: EF Disability Rep Application

Monday, December 2, 2013

Fibromyalgia Breakthrough - Treat The Causes, Not Just The Symptoms

The only ones benefiting from lifelong symptom treatments associated with chronic fatigue syndrome, lupus, autoimmune disease, or fibromyalgia are the pharmaceutical companies who sell billions in medication to treat them. A long list of pain medications, sleep-aids, anti-depressants, and anti-inflammatories are not sufficient because the diagnosis is incorrect. Instead, let's look at what the possible causes are to these diseases. 
See more at:

Sunday, December 1, 2013

Earnings and the disabled who go back to work

If you want to go back to work after a period of Disability, be sure you contact SSDI and discuss their Ticket to Work program, to make sure you don't end up losing your benefits.
Those earnings limits are no joke; they're strictly enforced.
Remember, you're no longer deducting huge amounts for health insurance premiums to reach your allowable income; once you're on SSDI, it's just $100 a month for Medicare, which could in and of itself put you over the limit.