An Institute for all Americans….
Or Just Some?
The Department of Health and Human Services 2013 Budget proposal doesn’t mince words about whose health the Department, which oversees the NIH and CDC, is charged with protecting….
This Budget request represents the Administration’s priorities for guiding the Department of Health and Human Services (HHS) to enhance the health and well-being of all Americans.
But has it? Government funded studies have been invaluable in documenting that the million people or so people with chronic fatigue syndrome in the U.S. have high rates of disability and cost the economy about $20 billion a year.Those are major disease type figures but has the DHHS listened to its own figures?… Read More
by admin on April 23, 2012
For decades, ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) has devastated the lives of patients and our loved ones, leaving us with an alarmingly low quality of life. Today, ME/CFS affects the lives of more than 1 million Americans of both sexes and all ages at an annual cost of at least $21 billion in direct costs and lost productivity.
As patients and loved ones, we have suffered too long with too little research, a disbelieving medical community and no approved drug treatment specifically for ME/CFS.
This has to change! We know that we need many things, such as more money for research.… Read More
by Cort on March 25, 2012
What's the story with Social Security Disability and ME/CFS? Take the survey and let's find out..
Getting Social Security Disability/Supplemental Income (SSD/SSI) can be a lifeline for financially beleaguered people with CFS (ME/CFS) but the application process is often lengthy and difficult. Anecdotal reports from physicians and patients suggest getting disability may be more difficult for CFS patients yet documentation of success rates is lacking and little hard data exists on what works best in the disability process.
We’re attempting to rectify some of those problems in this online survey of people with ME/CFS who have applied for Social Security Disability and/or Supplemental Income Security (SSI).… Read More
by admin on February 26, 2012
U.S. Senate Committee on Health, Education, Labor & Pensions
Full Committee Hearing on
Pain in America: Exploring Challenges to Relief
February 14, 2012
TESTIMONY OF JENNIFER SPOTILA
This testimony is submitted on behalf of the CFIDS Association of America, in loving memory of Christy Gaffey of Williamsburg, Iowa. Christy lost her battle with chronic fatigue syndrome (CFS) and interstitial cystitis on February 9, 2012 at the age of 52. She was an advocate for these medical conditions and, in days of better health, participated in lobby days organized by the CFIDS Association. With this testimony at today’s hearing chaired by Sen.… Read More
by admin on February 23, 2012
Spread the word!
It is time to YANK (not tug) the nation’s heartstrings again.
Young People with ME/CFS –
JOIN US in Speak Up About ME, to be
Invisible No More!
Washington DC this spring (2012)
How do we yank people’s heartstrings?
With the participation of young people and their families at the Chronic Fatigue Syndrome Advisory Committee meetings (CFSAC) in Washington D.C. Historically, few young people with ME/CFS have attended the CFSAC meetings.
Speak Up About ME
changes that, as young people with ME/CFS proclaim themselves to be INVISIBLE NO MORE!
Parents, guardians, and representatives from organizations supporting Speak Up About ME, accompany the young patients to the Speak Up About ME events in Washington.… Read More
by admin on February 9, 2012
The statistics the Campaign to End Chronic Pain in Women cites are startling…$50 million women in the US suffer from six chronic pain conditions (ME/CFS, FM, Interstitial Cystitus, TMD, Endometriosus, Vulvodynia), one of which is ME/CFS, which cost the US economy 80 billion dollars a year…..yet the NIH devotes only $1.36 per woman a year to research these disorders. (Is this the last great example of discrimination against females in the medical community?)
Women with these disorders suffer from the same litany of problems as do people with ME/CFS…..they generally get blank looks from physicians (and a quick call for anti-depressants), have difficulty simply getting diagnosed and once they are they are offered few treatment options.… Read More
by admin on February 5, 2012
Thanks to Alex for allowing us to post a thought-provoking blog suggesting that focusing a bit less energy on righteous indignation and bit more energy on undertaking rigorous examinations of positions and studies might make ME/CFS advocacy a lot more effective.
This is a detour from my three-quarter written blog on another aspect of philosophy of science – but not much of a detour. It still addresses a topic on my long term agenda.
We spend of lot of energy blaming people who do various things we don’t like. In particular, private complaints about proponents of biopsychosocial (BPS) approaches including CBT/GET are a favourite passtime – I understand why, but we make up most of the people listening.… Read More
by admin on November 30, 2011
It’s hard to beat a three for one deal – you put a dollar in for ME/CFS research and the McGrath Family Foundation will match it with three more dollars. It’s particularly hard to ignore when it’s going to a research team with a proven record of success. The CAA’s research team is nothing if not innovative. They are determining
- if ME/CFS patients brains are functioning as anerobically as their bodies seem to be
- if standing up causes a flare of free radicals that causing you to tip over, grow dizzy or at the very least ditch several points of IQ
- if exercise causes CFS patients gut microflora to go bananas – spiking an immune response – and causing post-exertional fatigue
- if exercise causes sensory, immune and endocrine genes involved in pain, fatigue and blood vessel functioning to spike resulting in pain, fatigue and you know the rest
- if immune and other gene expression networks hold the key to subsetting CFS
- a computer program that develops novel theories for CFS using existing research
That’s not all.… Read More
by admin on November 21, 2011
We started out with seven CFS non-profits in the running for $175,000 in the Chase Community Giving Contest. We knew the contest was going to get really volatile in the last couple of days and it has with four organizations dropping like rocks.
With only 22 hours left in the contest only three organizations appear assured of taking home any money; the IACFS (AACFS), the CFSKnowledge Center and Mass CFIDS.
Rocky Mountain and Wisconsin have dropped precipitously and are in the last few hours have dropped out of the top 100 (and the $25,000 prize). The fine New Jersey CFS Association which has done so much over the years is now off the leaderboard as is the exciting Enterovirus Foundation devoted to studying what may be a key culprit in CFS.… Read More
