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From Summer 2011 Forum

By C*

All those who are sick and tired of being sick and tired need only to go to the internet to find all the latest "cures" or remedies. The internet is full of misinformation and, when it comes to myalgic encephalomyelitis or chronic fatigue syndrome, the list is endless. But the internet is not the only place to find misinformation. To have been diagnosed with CFIDS/ME is to find misinformation, medical ignorance, discrimination, isolation and apathy. The funding that gains approval by our government never seems to lead to scientific knowledge that is beneficial to the patient. But the internet still takes first prize for disseminating the most disinformation on CFIDS/ME including information on federal websites.

A newly diagnosed patient, desperate for recovery, can contact numerous groups for futher information. They can also find countless physcians who claim that a recovery is not only possible but obtainable. Many physicians and health centers have gone so far as to pay for press releases (PR) to spread the word that they can "cure" a person that has "CFS". Just one example of this is the Hotze Health & Wellness Center in Houston, TX. In an April PR, the founder and CEO, Steven F. Hotze, M.D. states, "If your doctor diagnoses you with chronic fatigue syndrome you should ask what is causing it… adrenal fatigue is usually diagnosed as chronic fatigue syndrome (CFS), which is only diagnosing the symptom rather than the underlying cause." He believes that "an onslaught of stressors - noise pollution, traffic, injuries, and emotional conflicts" are causal. Well, he's right. All those will cause the symptom of chronic fatigue (adrenal fatigue) which is only one symptom but none of the same stressors can possibly cause all the proven science that is a part of CFIDS/ME. It has been decades since it was proven that the HPA axis in the brain was involved with CFIDS/ME. HPA stands for hypothalamus, pituitary and adrenal but Dr. Hotze is merely taking into consideration one part of what is affected in just one area of the brain.

Whom should we believe? Our government? Recently, The Peer Reviewed Medical Research Program (PRMRP) who provides military health-related research through our government announced that their FY11 objectives must address one of the 21 "topics" for funding support. The first one mentioned in their list is "Chronic fatigue syndrome". Their descriptive papers for researchers state, "CFS (also called myagic encephalomyelitis)" as it explains the disease. However, another arm of our government, the CDC, states that neither ME or CFIDS should be confused with CFS in their online course for medical professionals as the Forum has previously reported upon. They aren't alone in their direct disagreement with the CDC. The international blood banking association, the AABB that "recommends that donors who have been diagnosed with CFS by a physician not donate blood" also state, "Chronic Fatigue Syndrome is also referred to as Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) or Myalgic Encephalomyelitis (ME)." In fact, the AABB also gives patients a resource for their information: "The CFIDS Association of America" whom they say "has reinforced the need for CFS patients to refrain from donating blood." The CAA, of course, accepts huge amounts of money from the CDC. And around we go in circles. What government agency is giving real information and which is giving disinformation or are they all contributing in their own unique way?

So what do you do with all the misinformation and disinformation that abounds? How do you make them understand that CFIDS/ME is not about fatigue but about a central nervous system weakness that rest does not improve? How do you make them understand that this central fatigue is accompanied by the inability to think clearly or to find words or remember new information? Or that it involves disordered sleep and a feeling of having the flu along with being nauseous, to be unable to tolerate bright lights or noise or to have muscle and joint pain along with dizziness and disorientation and even intermittent paralysis and headaches?

Those are the questions that the founding members of the National CFIDS Foundation faced in 1997. They all had spent years advocating. They had written information booklets and led support groups. They had spoken to government representatives, participated in public demonstations, distributed information and raised money for research. What should they do? The only answer they all agreed upon was that the National CFIDS Foundation needed to fund research that actually followed all the already proven science. These were patients and the parents of patients with a spouse or two thrown together but they not only agreed to follow the science but, most importantly, to be completely truthful about this disease. The journey isn't over yet but it's already been longer and more arduous than any anticipated. It has also led to areas that could never have been imagined in the past 14 years. Yet the authors of a new study reported upon in the Journal of Virology stated that there is "still a wealth of prior data to encourage further research into the involvement of other infectious agents in CFS and these efforts must continue." With your help, they continue via the National CFIDS Foundation. Remember, even a precentage of your dues goes to fund research!

When will we be helped? Only when the actual cause is proven. That's why we don't want just more research but only specific research that leads us to a proven cause. That's why nobody is able or even wants to earn a salary by working for the NCF. No patient or caregiver needs any added incentive or motivation. We're all patients or love someone who continues to suffer from misinformation and not enough factual information. How much longer will it take? Now there's a question nobody can answer truthfully as we can't predict the future. We are, however, much further along than most know and we all feel that we can reach the end soon. It's what keeps us going. We hope you'll be among us when we're able to celebrate that day when we can go out of existence having accomplished our goal.

*The author, one of the founding members of the NCF, has asked to remain anonymous. He is, currently, a member of our medical committee.

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606