Wednesday, April 22, 2009

Text of the 2009 Informational Brochure

"I have treated more than 2,000 AIDS and CFS patients in my career. And the CFS patients are MORE sick and MORE disabled every single day than my AIDS patients are, except for the last two months of life!"
    – Dr. Marc Loveless

(infectious disease specialist and head of the CFS and AIDS Clinic at Oregon Health Sciences University, in Congressional Testimony, CFS Awareness Day, May 12, 1995)
I've had patients who met post-traumatic stress disorder criteria... where their trauma was their interaction with their physician around this illness. They came to a doctor with Chronic Fatigue Syndrome; they left the doctor with PTSD.
         – Nancy Klimas, M.D.
Miami Herald, March 24, 2009
In fact, 77% of CFS patients report negative experiences with health care providers, and 66% believe the treatment they received made them worse.  As a result, many patients have lost faith in the medical profession and have simply stopped seeking any treatment, considering it a waste of time, money and their limited energy to attend an appointment where they will likely again be verbally abused as being lazy or crazy rather than physically ill.
This can result in other health problems going undiagnosed or untreated, bringing with it the risk of premature death from something that could have been treated if not for (a) the patient's well-founded distrust of doctors, or (b) the proclivity of doctors to attribute any new symptom to either the CFS or the patient's over-active imagination.

Research has demonstrated physical abnormalities including changes in micro RNA, different types of immune dysfunctions, and multiple viral assaults.  Without treatment, long-term sufferers develop significant neurological and cardiac abnormalities, and die an average of 20-25 years before their time.
However, in the US, research breakthroughs occur solely in the private sector, because the CDC and NIH combined allocate at most $6M a year to study a disease that they estimate affects 4-7 million Americans (more than AIDS, breast cancer and lung cancer combined; and more than 10 times as many people as have MS).  This works out to about $1 per patient per year – compare that to $35/patient for epilepsy, $70 for autism, $250 for MS, and a whopping $650 per patient for cancer!
More in-depth information is available from or at your request from
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a disabling neuroimmune disease that affects more Americans than AIDS, breast cancer and lung cancer combined; more people than have multiple sclerosis or cystic fibrosis; a disease where patients are more functionally impaired than those suffering from diabetes, heart failure and kidney disease. This disease, which costs the US as much as $26 billion annually, has been sorely neglected by government health agencies.
Approximately a million Americans of all ages, racial, ethnic, and socioeconomic groups suffer for years, decades – and often their entire lives – from this disease. Its impact on the economy has been measured and is significant. Yet after nearly four decades as an internationally recognized and categorized disabling neurological disorder, ME/CFS remains, here in the US, one of the most underfunded, maligned, miscategorized life-altering illnesses of our time.
At the behest of the Obama-Biden Transition Team, a group of long-term patients prepared a 36-page report, an edited version of which was selected to be placed on the Obama website,
The conclusion of the patient group was that while lack of health insurance is a problem, even having gold-plated health insurance is no guarantee that you will get the correct diagnosis/treatment, because the research is not getting down to the front-line doctors where it will do the most good for the most people. 
One of our members was told unconditionally that she would never work again purely as a result of doctors allowing her to deteriorate too far without proper treatment; the ultimate irony is that she told the doctors at the first appointment what the proper treatment was and they refused to prescribe the medications she requested because they were unaware of the research showing that what they were prescribing was completely useless for ME/CFS.
Dr. Richard Bruno observes that rather than admit that they don't know what they're talking about, doctors will throw out red herrings like deconditioning, weight, depression, and prescribe exercise ... which, if you have ME/CFS is guaranteed to make you feel worse.  Then you risk developing real depression, which he notes is triggered when patients "can no longer meet other people's expectations and do what they think they 'should'."  It's a result, not a cause, and the medical profession must take responsibility that sometimes the cause for the patient becoming depressed is their bullying the patient to do more than the patient is physically capable of.
"There is ample evidence that ME is primarily a neurological illness. It is classified as such under the WHO international classification of diseases (ICD 10, 1992) although non-neurological complications affecting the liver, cardiac and skeletal, muscle, endocrine and lymphoid tissues are also recognized. Apart from secondary infection, the commonest causes of relapse in this illness are physical or mental over-exertion."  – Dr. Elizabeth Dowsett
Unfortunately, quite often, the physical or mental over-exertion that triggers the relapse is a direct result of an uninformed doctor pushing the patient to do more, either to "prove you're not lazy" or because the doctor has misdiagnosed ME/CFS as depression and thinks that "exercise will make you feel better" by releasing endorphins.  In fact, there is ample evidence that aerobic exercise not only does not make the ME/CFS patient feel better, it can push patients into relapse; some are permanently bedridden as a result of this faulty medical advice.
Too many doctors still fail to distinguish between the symptom of "chronic fatigue" resulting from overwork or as a symptom of other medical conditions and the entirely-different neuroimmune disease of ME/CFS.
Please help us by sending letters to your elected officials, and enclosing our report, which you can download at:
Thank you for your participation.
<signed by 8 support group leaders/activists>
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Any activist/support group who would like to distribute this brochure, please contact  We can easily prepare a version including your contact information, meeting date/location, etc.  (Alternately, feel free to simply cut-and-paste this text into your word processing or publishing program.)
The more people (especially elected officials) who get this brochure, the better our chances of finally getting the research we need toward an effective treatment/cure.

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1 comment:

CFS Facts said...

Chloe writes:
I also wanted to let you know that I found a link on your site that doesn’t seem to be working. It’s a link to (found on this page:, which was archived when the Affordable Care Act became law. This page has replaced it:, which I thought would be helpful to you in case you’d like to update the broken link.