Nonpartisan ME/CFS Petition sign now

Petition to U.S. Government officials and candidates:

Introduction:

We represent a large and severely disabled group of Americans who have been seriously neglected by previous administrations. We do hope that you will take a few minutes out of your busy schedule to read about us.

In the United States alone, approximately 800,000 adults and an uncounted number of children suffer from the disease known throughout the world as Myalgic Encephalomyelitis (ME). By the time you count the spouses, children, and parents of these terribly ill people, there are several million Americans whose lives are affected by this devastating disease. Yet you probably haven't heard the disease referred to by its internationally recognized name. Here in the USA, a CDC committee made the regrettable decision, back in 1988, to re-name the disease "chronic fatigue syndrome." The name itself has become part of the problem. Not only does the trivial-sounding name contribute to the disparaging way in which ME/CFS sufferers are treated, but it also discourages serious research into the biological malfunctions of the disease.

In reality, "fatigue" is only one symptom of this disabling illness, which is actually a complex interaction of neurological, endocrine, and immunological disorders. People who suffer from CFS are not tired. We're sick. For years on end, we deal with a flu-like illness which may fluctuate in severity but never completely goes away. Our number of functional hours per day is severely reduced, usually to less than half of our previous capacity. Our level and type of function are also greatly reduced. Sustained physical or cognitive activity becomes impossible. In addition to muscle pain and fatigability, we frequently lose our ability to concentrate, calculate, or remember words. Exertion worsens symptoms, and recovery times are greatly increased. A few minutes of exertion requires hours of recovery, and a few hours of exertion requires days of recovery. Many of us cannot stand on our feet for more than a short time without severe weakness and dizziness. This is known as orthostatic intolerance (OI), and may include Neurally Mediated Hypotension (NMH) or Postural Orthostatic Tachycardia (POTS.) Other symptoms of ME/CFS vary a bit, but often include: sleep disorders, spatial disorientation, headaches, visual disturbances, swollen lymph nodes, allergies, night sweats, intestinal disorders, and recurring upper respiratory infections.

All of the above symptoms have physical causes, many of which can be identified and documented. Persons with ME/CFS have greatly reduced blood circulation to areas of the brain and muscles. Cardiac responses to exertion are abnormal, and blood circulating volume is greatly reduced. MRI scans of the brain generally show punctate lesions. Basic metabolic functions are abnormal, leaving higher quantities of methaemoglobin and 2,3-DPG in the bloodstream. In many patients, the immune system's Natural Killer Cells lose their ability to kill much of anything, and detailed blood analysis shows an RNaseL enzyme which has split into smaller, less functional pieces, thus severely limiting the patient's ability to destroy viral pathogens.

CFS patients lose their livelihoods and, in some cases, their lives. Yet, amazingly, most doctors actually discourage their CFS/ME patients from getting the types of testing listed above.

In spite of its devastatingly disabling effect, CFS/ME remains "the Rodney Dangerfield of diseases. It gets no respect," not only from an uninformed public, but from our governmental agencies as well. A few years ago, a GAO investigation found that the CDC had diverted almost $13 million of CFS research money into other projects. The NIH, though not held responsible for outright misuse of funds, used millions of dollars of our research money on studies of depression and other fatiguing illnesses which have nothing to do with our disease. Even with the recent publicity generated by the celebrity status of soccer player Michelle Akers and "Seabiscuit" author Laura Hillenbrand, little has actually changed for CFS sufferers. Years of our lives pass by without appropriate effort or funding being put into research. Many of us are homebound. A few are bedbound. Our careers, our financial independence, and most of our social and recreational activities have been reduced to distant memories. Many of us have lost everything we owned, and some are homeless. Some of our most severely afflicted sufferers can no longer read, swallow, or speak. Others endure severe and unrelenting pain. A small but tragic percentage have run out of options and hope, and have chosen to end their own lives. But those of us who can still read, follow the research news with determination if not optimism, hoping for a breakthrough, however small, in CFS research. Too often, though, we find that the serious immunological and neurological research goes unfunded, while funding is diverted, instead, to studies of perceptions and "fatigue states."

In addition to the vague and trivializing name that has been chosen for this disease, the CDC has also insisted on working with a vague and confusing set of diagnostic criteria known as the Fukuda criteria. This seriously-flawed case definition leads to even greater misuse of our research funding.

As with almost any other field, the mistakes made by the U.S. government reverberate around the world. In the United Kingdom, opportunistic psychiatrists have broadened the Fukuda criteria even further, creating the Oxford criteria, which is little more than a catch-all diagnosis for generalized fatigue. Doctor Vance Spence, Chairman of the U.K. group MERGE (ME Research Group for Education and Support) writes: "Comparatively little biomedical research has been done due, in part, to the fact that ME has been subsumed by the all-inclusive, heterogeneous diagnostic construct termed chronic fatigue syndrome. The construction of the CFS label has resulted in a disproportionate allocation of funding towards psychosocial models of the illness.

Although we appreciate a few of the better CDC-sponsored studies (most notably the gene expression profiling studies), too much of our governmental research funding remains bogged down in faulty and/or secretive procedures. CFS advocacy groups have made desperate pleas to the CDC to change the name of our disease, revise the criteria for the disease, and appropriate our research funding more effectively and openly. About three years ago, the CDC did permit a group of CFS experts to form a Name Change Workgroup, which spent more than two years carefully reviewing all available information on the disease. But when the workgroup submitted its recommendations, the CDC summarily dismissed them, choosing instead to further define "fatigue."

We do not need anyone to define fatigue, nor do we need more studies which provide us with nothing but coping strategies. Our support groups can provide that. Here is an abbreviated list of the things we DO need:

The Petition:

1. We need and deserve effective governmental agencies which will work to help us, not to placate us. And we need greater accountability from those organizations, not only regarding how our research money has been spent, but also regarding who or what it will be spent on.

2. We need and deserve FOCUSED research, based on the biological abnormalities of this specific disease, not on the general category of fatiguing illnesses, and not on psychosocial models or behavior-based treatment plans. We recommend the following policy: At least 80\% of CFS research expenditures should meet the approval of a patient-elected board of representatives and medical professionals.

3. Some of the hardest-hit victims of this disease are children and adolescents. They need and deserve research and recognition of their illness so that they will not continue to be misdiagnosed as unmotivated, school-phobic, or depressed. And their parents need to be free from the fear of being accused of Munchausen by Proxy and/or having their children taken away from them.

4. We need the name of our disease changed so that it more accurately reflects the severe physiological nature of the disease.

5. We need a more accurate set of diagnostic criteria. Fortunately, the Canadian government has made that easy for us. They recently commissioned a group of international experts who carefully rewrote the criteria for CFS/ME. The Canadian consensus criteria is a clear and well-written definition of this disease. The use of that criteria would help eliminate, or at least greatly reduce, the waste that has drained our research funding. So far, however, our CDC representatives have turned a deaf ear to our requests to adopt this criteria.

6. As soon as the name is changed and the Canadian criteria are adopted, we need an improved physician education program. Currently, very few doctors know anything at all about this disease, and some of the information currently being supplied to these physicians is just plain wrong.

7. Physicians also need to be advised to be wary of studies performed using the Oxford criteria. These studies tend to be intentionally slanted, and the conclusions often do not apply to actual CFS/ME patients.

8. We need reasonable recommendations for diagnostic testing. We are tired of hearing that the only acceptable testing for this disease is exclusionary testing to rule out other diseases. We realize that no single test is perfect for diagnosing all cases of CFS, but when a battery of immunological, neurological, and metabolic tests are applied, abnormalities do appear and symptoms can be more accurately categorized and treated. Currently, those of us who need to apply for Social Security disability benefits are stuck in a no-win situation: The SSA says that we must provide objective laboratory test results in order to qualify for benefits. However, the CDC refuses to recognize any currently-available tests. This cannot continue.

Notice that, at this time, this petition does not even ask for MORE funding for CFS/ME research. That's not because we don't need it or deserve it. We certainly have been sick too long and have lost too many years of our lives already. Nor is it because such funding would cost too much in the long run. A recent economic impact study done by the CDC shows that CFS costs the United States more than $9 billion each year in lost productivity, or about $20,000 per person annually, not even including healthcare costs. Many of us were educated professionals before we got sick, and all of us would like nothing more than to return to productive lives. One of our CFS sufferers, an economics professor, writes, "We are not entitlements. We are people, and our right to life, liberty, and the pursuit of happiness is being ruined by this devastating disease."

But we realize that, in the short run, other priorities, both here in the USA and overseas, may limit the possibility for increased funding at this time. That's why, for now, we are limiting our request to efforts which require nothing more than responsible use of current resources. We have the right to insist that deception, disinterest, and private agendas be taken out of the formulas which determine how our governmental research money is spent. We also have a right to see clear evidence that the funds which were diverted from our research are actually being replaced, as was required by the GAO following its investigation.

Most of all, we need people at the CDC and NIH who are willing to actually listen to us -- ALL of us, not just a select group -- and make the changes that benefit us, rather than preserving a status-quo situation which makes it all-too-easy for our funding to be wasted or misused.

"All Truth goes through Three Stages:
First, It is ridiculed.
Second, It is vehemently opposed.
Finally, It is accepted as being Self Evident."

German Philosopher Edwin Schopenhauer.

[Note: These abbreviations may be helpful to understand comments left:
CFIDS= Chronic Fatigue & Immune Dysfunction Syndrome (another name for CFS/ME.)
PWC= person with CFS.
PWME=person with Myalgic Encephalomyelitis, international name for CFS.
FMS= Fibromyalgia Syndrome: a painful muscle condition which frequently accompanies CFS.
MCS= Multiple Chemical Sensitivities: a severe allergic condition which sometimes accompanies CFS.]


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  • 24 February 20161000. Jenny T
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  • 17 December 2015983. Marc Mi
    PWC since 10/26/1979, approximately 25 years. Fully disabled since 1982. Founder (and for its first 13 years, Chairman) of The CFIDS Association of America. Father of a beloved daughter diagnosed with CFS. City/State/Zip Code Charlotte, NC 28210
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