Saturday, May 25, 2013

Mary Dimmock’s May 2013 CFSAC Testimony | Thoughts About M.E.

 
At $3.7M, 2012 funding for this disease is 3% of the funding for multiple sclerosis, a disease with a similar level of disease burden. Funding for this disease is far, far below what would be expected based on burden of disease or economic impact. This is about a fair share of what funding is available.

The opportunities to change the future are palpable. But contrary to Mr. Munos's suggestion at the FDA meeting, patients are too stigmatized, impoverished and terribly ill to come up with the funding to solve these challenges on their own. They already pay with their lives and with $18-23B a year in lost productivity and direct medical costs. If there ever was a time for the NIH to step up to the plate, it is now. Use the approaches used in other disease areas to foster the needed investments and collaborations.

The disconnect between my sense of urgency for treatments and a cure to get my life back after 23 years with this disease and their totally lackadaisical manner and approach to everything discussed makes me totally feel like giving up. This meeting is a stark reminder that I am alone. I'm stuck with this illness for the rest of my life, just staring at my ceiling from my bed.

 

Slightly Alive: Testimony to CFSAC - May 2013

 
"City of Hope in Los Angeles was founded to get patients with tuberculosis off the streets. Where is the City of Hope for patients with ME or CFS?"
 
TB patients are known to be contagious.  It was a public health and safety matter to get them off the streets.  CFS seems to only be contagious in the earliest stages, so a City of Hope would be only for our benefit, not for the benefit of society ... and since we're presumed to be lazy fakers, why reward us with free room and board?
 
 
 
"As Irish patient and advocate Tom Kindlon puts it, "If graded exercise therapy were a drug instead of a treatment protocol, it would have long ago been banned by FDA." There are too many adverse responses, and (frankly) not much evidence of success.

"Post-exertional collapse, post-exertional dysfunction, post-exertional crash, post-exertional relapse – whatever you call it, is there really any debate any more over whether it exists?

"Shouldn't that be the first thing you tell doctors?

"I can tell you that it's the first thing we wish they knew."
 
Unfortunately, in my experience, when you try to tell them that exercise wipes you out, they latch onto deconditioning as a cause and will argue you into exhaustion that you just have to exercise yourself back to health.
 
I have led doctors by the hand through the thought process that it is absolutely impossible to become so deconditioned so quickly that within a week you go from able to walk two miles to being exhausted from walking a couple blocks.  And after getting them to admit that such severe deconditioning could never happen that quickly, they promptly lose that thought and go back to the mindset that you just have to get yourself re-conditioned by exercising.
 
Because, although we patients know this is a hallmark of ME/CFS, doctors don't!  CDC hasn't told them, and when patients tell them, it's brushed off as women don't want to exercise because sweat will ruin their hair and makeup.  "Stop making excuses and go exercise!  You'll feel better."

Thursday, May 23, 2013

Capitol Alert: Disability-rights advocates flock to Capitol

 

A flier at the event listed some key issues affecting Californians with disabilities, including:

  • Funding for In-Home Supportive Services, Medi-Cal, and Supplemental Security Income (SSI) programs.
  • Senate Bill 320: Would require health plans and health insurers to provide coverage for certain treatments involving acquired brain injuries.
  • Senate Bill 330: Would require mental health to be included in the next revision of California's health education framework.
  • Senate Bill 468: Would require creation of a "self-determination program" that would allow consumers of regional centers to use an individual budget for purchasing services and supports.
  • Senate Bill 391: Would impose a $75 fee on the recording of various real estate documents to generate revenue for affordable housing.
  • Senate Bill 651: Would require investigators of state developmental centers and state hospitals to authorize a sexual assault forensic examination for any resident suspected of being abused.
  • Senate Bill 705: Would bolster funding for the Disabled Students Program at community colleges.
  • Senate Bill 22: Would require health plans and health insurers to submit annual reports certifying compliance with mental health parity requirements.
  • Senate Bill 550: Would require adoption of future building standards to boost the number of residential public housing units containing mobility and communications features for people with disabilities.
  • Assembly Bill 420: Would restrict the authority of a school superintendent or principal to suspend or expel a student for "willful defiance."

    Read more here: http://blogs.sacbee.com/capitolalertlatest/2013/05/disability-rights-advocate-flock-to-capitol-for-day-of-lobbying.html#storylink=cpy

Sunday, May 19, 2013

Occupy CFS » 2012 NIH Spending on CFS Studies

 
"To make it worse, three of the grants NIH included in the 2012 ME/CFS list are not actually related to ME/CFS"
 
Same-old, same-old, they spend less per-patient on CFS research and some of that isn't even researching CFS.
 
Patients need to demand funding parity with similar diseases, such as MS.