Karen Harrington is President of the CFS Association of Minnesota. The IACFS wishes to thank her for granting permission to include the following unofficial summary she has prepared of the presentations made at the Bloomington Minnesota 2001 meeting. The IACFS has not attempted to confirm in detail the accuracy of the summary she has prepared and has not modified it in any way aside from omission of some of the headers quoting body text. This material was also published in the CFS Info and Update
publication of the CFS Association of Minnesota, Volume 53 Fall 2001.
CFS Patient Conference A Success
By Karen Harrington, President
Our annual conference, held jointly this year with the IACFS at the Bloomington Holiday Inn Express, was a wonderful success. Around 150 people attended, with representation from Minnesota and other states. A number of people expressed thanks for the layout of the conference, which featured presentations in two rooms, a lobby area with exhibits immediately outside the room, and a close-by resting room with presentations via closed circuit video.
Below are highlights of the conference presentations. More detailed reports are scheduled for upcoming newsletters.
Dr. Benjamin Natelson: The CFS Patient in the 21st Century
Keynote speaker Dr. Benjamin Natelson, is a well-respected neurologist and CFS researcher from the federally funded CFS Cooperative Research Center in New Jersey. He reviewed some of the hypothesized causes of CFS, including viral infection, immunological dysfunction, depression or other psychiatric illness, orthostatic intolerance, and encephalopathy.
Dr. Natelson’s presentation and handouts discussed three factors that currently impede understanding of CFS. The first was testing of favorite theories without confirmatory studies, comparison of inactive patients with active controls, which could confound findings regarding underlying disease, and the heterogeneous nature of CFS patients, which could also alter findings.
He also expressed concern about the structure of the National Institutes of Health and how it affects CFS funding. He feels it encourages too narrow and specific a view of appropriate research proposals. Dr. Natelson indicated that an approach that crosses disciplinary bounds and includes proposal reviewers with CFS experience is needed to advance CFS research proposals. In closing, he mentioned that his center is actively recruiting patients for several studies and he encouraged people to apply, stating that many costs are covered for patients who participate.
Dr. Leonard Jason: Overview of Fatiguing Illness CFS/FM/MCS
After giving an overview of fatigue and its potential causes, Dr. Jason presented the findings of his NIAID-supported study on the incidence and demographic characteristics of chronic fatigue and CFS in the general population. This work is very important because it looks at the illness in the community, rather than focusing only on those who are able to access appropriate medical care.
His findings were fascinating. We have all heard CFS referred to as the "Yuppie Flu" because some early researchers felt that it was a condition mostly of white, upper-middle class women. Jason’s research shows the opposite. While he found incidence of CFS in the community to be higher in women than men, incidence rates were actually higher in unskilled or skilled, less educated people from ethnic backgrounds than in well-educated, professional, or Caucasian people. Hispanics, appeared to be more vulnerable to CFS than others
Jason also discussed the implications of his findings, expressing concern about how to identify and assist under-served populations.
Overall, the CFS incidence rate for females in his Chicago study was 522 per 100,000 and for males it was 291 per 100,000. The female CFS incidence rate exceeds that of women with HIV (125 per 100,000), women with lung cancer (43 per 100,000), or women with breast cancer (26 per 100,000), yet funding for CFS is abysmally lower than funding for these conditions. He noted also that people with CFS are often more functionally impaired than those with conditions such as congestive heart failure or MS.
With respect to managing CFS, he stressed the importance of functioning within one’s "energy envelope." That is, pacing oneself to avoid either the overwork-then-collapse lifestyle, or an under-challenged lifestyle.
Dr. Sudhir Gupta: Putting the Pieces Together Towards Understanding CFS/FM
This was a difficult, and yet important, presentation to understand. Dr. Gupta’s research is multi-disciplinary in its study of the influence of cytokines such as interleukin 6 (a product of our immune system) on other systems in our body, such as our neurological system. He believes that over-expression of certain cytokines has a cascade effect, changing our body’s ability to carry out a number of functions.
Dr. Gupta appeared to question the assumption that a viral or other agent was not involved over the long term in the maintenance of CFS. He also stressed the need to study immune genetics, that is, the genetics associated with the immune response our bodies mount to infections.
In these and other studies, he called for a longitudinal approach, so that changes in patient function over time, and any associated changes in their immune system, could be monitored and captured more effectively.
Finally, Dr. Gupta argued for creating subcategories of CFS patients, according to symptom sets. The subcategories would create greater specificity, which he saw as an aid to future CFS research.
Dr. Charles Lapp: Thoughts on Newer CFS/FM Therapies
Dr. Lapp provided us with a lively update on treatments to consider for CFS/FM. He explained four aspects of CFS/FM to be addressed: exertional, postural, hyper-sensitivities, and stress intolerance. Like Dr. Jason, he emphasized staying within your "activity envelope."
With respect to exercise, he suggested stretches and low-level aerobic interval activity (meaning, for example, to exercise at the beginning for 3-5 minutes a day, then add additional sets of 3-5 minutes of exercise, with 3-5 minutes of rest in between sets over a period of weeks). His clinic suggests a variety of vitamins and supplements, beginning with a good multi-vitamin and including consideration of supplements such as NADH.
Dr. Lapp emphasized the importance of adequate treatment of sleep disorders, pain, and fatigue. Options he suggested for sleep included melatonin, phototherapy, OTC medications, clonazepam (0.5 mg), trazadone (50 mg) and hypnotics.
For fatigue and cognition, possibilities include NADH, serotonin and/or dopamine agonists to address sleep, pain, irritability and depressed mood, and stimulants.
Pain is very important to treat, and may result from central sensitization. Some alternatives include PUFAs/NSAIDs, Tramadol, "Narcotics Lite" and long-acting narcotics. Dr. Lapp mentioned several therapies that are currently under investigation or are considered investigational, such as low dose cortisone and Ampligen.
Donald Uslan, MA, MBA: Rehabilitation, Sleep and Treatment Alternatives for CFS/FM
Mr. Uslan is a specialist in designing modifications and accommodations that will assist people with CFS in their daily lives, including in the workplace. He pointed out that the Americans with Disability Act specifically cover CFS and FM, and it can be used effectively to negotiate accommodations in employment.
Vocational rehabilitation specialists can assist persons with CFS in approaching and negotiating changes to the workplace. From his perspective, it is very important for people with CFS to be formally assessed for sleep disorders, since these can have a profound influence on a person’s ability to function. Stress management is also important in coping with CFS. Mr. Uslan’s handouts were extensive, and included very practical advice.
Frank Levin, Attorney: Social Security Disability Insurance
Mr. Levin graciously stepped in at the last minute as a very knowledgeable substitute for Barbara Comerford, who was ill and could not attend as originally scheduled. He provided an overview of the processes associated with securing disability payments, focusing primarily on Social Security.
He encouraged people to secure legal assistance early, as decisions and steps taken early on can influence one’s ability to carry a case to completion successfully. He noted that many cases could take a significant amount of time to process.
Workshop: Your Child’s Educational Rights
In the pre-conference workshop, participants took advantage of the experience of Virginia Richardson, Parent Training Project Manager of the Pacer Center (Parent Advocacy Coalition for Educational Rights.) She spoke about educational rights and the two main options available for students: Section 504 arrangements, and the more formal Individual Education Plans under the Individuals with Disabilities Act.
While the incidence of CFS among children may be lower than for adults, children and teenagers with CFS can face incredible difficulties in school, including the threat of expulsion, if they are not provided with the appropriate educational support. Her handouts included guidelines for working with Section 504 and a sample IEP response.
Workshop: Advocacy Training
CFIDS Association advocacy trainers Patti Schmidt, Association Board member, and Mary-beth Buchholz, a Washington DC-based lobbyist for the Association, discussed advocacy needs at the national level. The advocacy trainers strongly encouraged participants to help bring Congressional attention to the needs of those with CFS.
They suggested joining C-ACT, an internet-based program of the CFIDS Association, which notifies people about issues that need to be raised with national legislators. They also advised writing and visiting national legislators locally to increase their awareness about the impact of CFS and the need for research funds.
The advocacy trainers also encouraged participating in Lobby Day, to be held in Washington DC in March. During the Lobby Day campaign, the CFIDS Association provides a one-day orientation session, and then participants travel around the Capital in small groups to visit key legislators.
The advocacy trainers emphasized that many issues, including CFS, are taking a back seat during this time of national crisis. They felt that lobbying to move the issue of CFS funding forward was needed even more now than ever.
They were encouraged with the move of CFS research at NIH from the National Institute of Allergy and Infectious Disease (NIAID) to the Office of Women’s Health, which is located in the NIH Director’s Office. This move will help in getting CFS projects outside the specific scope of NIAID, and aid cross-disciplinary research.
On behalf of the CFSA-MN Board, I would like thank all those who helped make this conference a success. It would not have been possible without their help.
In addition to the IACFS speakers, we thank those who added to the conference line-up including Judy Basso, Founder and President Emeritus, Frank Levin, who came forward on very short notice, Virginia Richardson, from the PACER Center, and Patti Schmidt and Marybeth Buchholz, from the CFIDS Association.
Volunteers included: John Michael Francis, Marcy Grossman, Derek Helstrom, Gordon Kritzer, Harriet Kritzer, Becky Lepley Elaine Lepley, Scott Lepley, Brian Lutterman,
J. Kenneth Myers, Jane Ringer, Libby Ringer, and Wendy Roehlke.
We also extend our thanks to Sue Hall, Executive Director of IACFS, Kris Hopkins, Operations Manager of CFIDS Association of America, Dennis Schoen, CEO, Pro Health Inc., and Pat Fero, Wisconsin CFS Association. Thanks also to CFSA-MN Board members who volunteered: Evaughn Anderson Carol R Larsen, John McClay, Robert Reedquist, John Seagard, and Scott Trobec.
The CFSA-MN Board especially appreciates all the work and extra help provided by Kim Helstrom, Conference Planner and Coordinator.