Presentation to the second meeting of the
Chronic Fatigue Syndrome Coordinating Committee (CFSCC)of the
Department of Health and Human Services (DHHS)
The Federal Government of the United States of America
October 22, 1997
Mary M. Schweitzer, Ph.D.
Chair, Steering Commmittee
WECAN - The Worldwide Electronic CFIDS/M.E. Action Network
Thank you for the opportunity to speak on behalf of people with chronic fatigue and immune dysfunction syndrome, also known as myalgic encephalomyelitis.
My name is Mary McKinney Schweitzer; as many of you know, I am a tenured professor at Villanova University, on indefinite medical leave with this horrible disease, chronic fatigue syndrome. I am co-chair of the steering committee of a WECAN, a CFIDS/M.E. advocacy organization of roughly 160 members, that exists solely on-line. I also operate two internet discussion groups for information and support for people with this disease, and I run a web domain site for information purposes at http://www.cfids-me.org.
First, I want to thank everyone here for their efforts on behalf of patients with CFIDS and fibromyalgia. There have been many positive developments in the last six months, and I have every hope that the next six will also prove fruitful.
I am not here today for myself, but as a representative of others who cannot be here today because they are too ill. We would like to ask you to please remember that: that the ones who are the most sick are invisible, hidden away. If they have access to Internet, they are among the most fortunate. How many more are isolated in their invalism? Let us spend a few moments to hear the voices of those for whom this meeting has the most importance.
I have appended testimony from members of my organization who were not well enough to be here.
1. The Priority One Designation:My members would like to know what happened to the "Priority One" designation that was made in a statement in May, 1995, at a congressional briefing on cfids. We would also like to know why CFIDS and fibromyalgia are not on the list of reportable illnesses for surveillance purposes. Kathy Houghton, the president of the Alaska CFIDS Association, attended a presentation in Anchorage, Alaska, on February 28 of this year, hosted by The Alaska World Affairs Council. The speaker was Dr. Alan J. Parkinson, Ph.D., Acting Director and Chief, Laboratory Activity, Arctic Investigations Program, National Centers for Infectious Diseases, Centers for Disease Control and Prevention, Anchorage, Alaska. The Title of the Presentation was: "GREAT DECISIONS 1997: Addressing Emerging Infectious Disease Threats for the 21st Century." Through the entire presentation, Dr. Parkinson failed to mention chronic fatigue syndrome. Ms. Houghton spoke up during the question and answer session that followed: "Knowing the seriousness of this disease and it's listing as a Priority 1 Re-emerging Infectious Disease with the CDC in Atlanta, what steps will you be taking to support public awareness, physician education and protection of our community blood supply?" He responded categorically, "Nothing." When I then asked him why nothing would be done, his response was "because nobody is dying from chronic fatigue syndrome." We really would like to know what is going on here: Is this, or is it not, a Priority One disease? Can someone produce a memo explaining what happened, why the designation was given and then taken away? Is this or is it not considered infectious? And when did the Centers for Disease Control become the Centers for "Death Prevention" alone?
2. Why is a disease that is apparently not infectious classified within the Division of Viral and Rickettsial Diseases in the National Center for Infectious Diseases of the Centers for Disease Control?Either you are fairly confident that it is contageous, or fairly confident that it is not. If it is probable that it is infectious, with 400,000 patients and the number most likely on the rise, should not the public be informed? Are you prepared to take responsibility for another incidence of the blood supply becoming contaminated? Conversely, if you are confident it is not an infectious disease, then is there not a more appropriate home for the disease within the Centers for Disease Control, or the government as a whole?
3. Need for a broad clearinghouse for medical research and information.It is important to communicate to the community the breadth of research on this disease, since we really do not know which research lines will prove most fruitful. I have brought with me a sample of a bibliography from the AACFS, and another from MPWC. Note the size of these bibliographies. If you visit the CDC's website, or read one of the brochures that is sent out, there is no sense at all of the range of information available with regard to this disease. Whether or not individuals within the government believe a line of inquiry is going to be successful, if it is published peer-reviewed research it should be collected together in a single spot. We would be happy to assist in any way possible with this.
4. Toxic assaults and the trigger event of CFIDS:Several of our members wanted it noted that for some people the shock that seems to have put them over the edge was a toxic encounter, and would like for there to be more research into this possibility. They point to the experiences of the Gulf War Syndrome patients as similar to theirs.
5. The history of research on Myalgic Encephalomyelitis:Our Canadian, Australian, and British membership respectfully request that the United States' federal employees refrain from trying to influence negatively the use of the term Myalgic Encephalomyelitis, as it has been used for 40 years in their countries to designate a recognizable illness. They would also like to know why in the accounts of the history of research into this disease the CDC is neglecting the research conducted in the United Kingdom, Canada, Australia, and New Zealand.
6. More research funds are desperately needed, and closer accounting of the allocation of those funds designated for CFIDS research:As I noted last spring, the United States loses $8.3 billion in income productivity alone due to the devastating impact of this disease. That translates into $2.7 BILLION in lost income taxes. A mere $15 million for research seems rather penny wise and pound foolish, does it not? Furthermore, a medical professional stricken with the disease who had planned on being here but was unable to make it asked me to inquire about the following: less than half of the $8.7 allocated for CFIDS research in Fiscal Year 1998 to the NIH is going to actual CFIDS research - the rest is allocated for studies on such things as schizophrenia, seasonal affective disorder, and a good $1.06 million of this money has been allocated to the research center on the psychobiology of ethnicity.
7. Communication with other disease communities:I also bring a message from the Lyme Disease community that they would like to see more research into the resemblance between chronic fatigue syndrome and sero-negative Lyme Disease, as well as the other diseases being reported as being passed through contact with deer ticks. We would like more active recognition that Multiple Chemical Sensitivities, Fibromyalgia, Post Polio Syndrome, and Gulf War Syndrome bear far too many resemblances to Chronic Fatigue Syndrome to justify continuing to ignore the similarities. I am also fascinated by the similarities between our disease and some forms of Multiple Sclerosis. We need cooperation and lines of open communication among these different groups, and we also need studies that can show the degree of overlap among these different diseases.
8. An Internet Link.One of my subscribers, Judith Wisdom, a former medical graduate student at Penn, asks if it would be possible to set up an email account at one of the government agencies, where patients could write with our concerns and questions? Would someone read it, think about it, respond to it? It might help with the feeling of isolation and voicelessness.
9. Show Doctors the Patients!Doctors around me said at the conference: they need to see more examples of patients, and practical diagnostic advice. Go to the big teaching hospitals and take us as guinea pigs. Bring some who are bedridden!
10. Public Education about the worst states of the Disease.Instead of promoting the idea of an "average" patient, need to show the different states of the disease. Even without being able to say how many are in which state, must start out by noting that there are these different states. Several years back had a winter where December was the coldest on record, then January was the warmest on record: average winter. Right? How many people here know someone who has been so ill with this disease they have been unable to work, unable to maintain normal activities. Okay. Surely we don't all know the same one. So there is a number of patients who are in this state. How many? Five? Ten? One hundred? At what point do we notice? The public really needs to know this.
In "The Actively Sick," an editorial printed in The Wall Street Journal,26 August 1997, p. A16, the Journal -- as an institution, not in a personal op-ed piece -- stated: "most sensible people ... think [chronic fatigue syndrome is] something they might like to sign up for if they just had time to take a long break." When is this abuse going to stop? What actions are you taking to stop it?
Why not a press conference?
I refer the audience to Appendix A: How Bad IS Bad?
11. Acknowledge and Identify the Stages of CFIDS,as they do with Multiple Sclerosis. Right now, we have no way to diagnose the disease using the CDC guidelines until after six months of debilitating fatigue. However, CDC statistics themselves acknowledge that perhaps half of all PWCs experience "slow onset" -- a gradual worsening of their disease until they finally collapse into the acute state. We need to study the experiences of those who, retroactively, can be said to have had the disease before the tell-tale six month collapse, in the hopes of preventing some of the worst states and keeping more people out in the community and in their jobs. Let me suggest the following typology, which of course is open to change:As a start, I refer to Appendix B: The Need for Diagnostic Criteria for before "The Crash"
- Flare or active
- Partial remission
12. Social Security Re-evaluations in the Bay Area:San Francisco members report that Social Security is systematically going through the cases of everyone on disability for CFIDS and sending them to a psychiatrist who does not "believe" CFIDS is a physiologically-based illness. People are terrified. They do not know what SSDI wants; they do not know what they can do.
13. Continuing problems with disability, both private long-term insurers and Social Security:There has been no change of which I am aware in this situation; if anything, it is a bit worse, as the concerns of the Bay Area patients show. What has happened to our nation where we will left invalids suffer for two, three, four years without income? These are honorable, hard-working people who paid into the system, and who thought that disability benefits were part of their income. They were deceived. We need guidelines for both Social Security and for private insurors, and we need an independent board for appeals with regard to both. It is grossly unfair that the honest disabled must pay for expensive doctors' reports, lab tests, and lawyers, simply to receive the paltry income they were promised if such misfortunes befell them. We, the honorable disabled, are paying the price of whoever is out there still cheating. It is not right. The cheaters should pay - not us. Or certainly the burden of those who cheat should be borne equally by all of society, not shoved off unto the weakest.
I conclude by referring you to Appendix C: Disability Struggles , a compilation of stories about struggles patients have had with both Private Long-Term and Social Security Disability.
My membership has asked me to ask you: is there any possibility of opening an investigation into the abuses of the insurance companies with regard to PWC's? We have people who can testify - though some must be subpoenaed because they are had to sign gag orders in order to receive any settlement at all. Surely the public is unaware of these abuses; what can we do to end them?
I am also including, at their request, short pieces of testimony from Three PWCs: Judith Wisdom, who is a CFIDS patient confined to bed in a Philadelphia apartment; Condy Eckerle, living in severe poverty in New York City, and finally, Pat Blankenship, who may be known to some of you because she used to live in Maryland and come to the earlier versions of these meetings. Pat is in pretty bad shape, I am afraid. She wanted to be here, but it was not possible.
Thank you for your time. I hope the next six months are as productive as the last.
Mary McKinney Schweitzer, Ph.D.
Villanova University (on medical leave since January 1995)
Co-Chair, WECAN, Inc.
The Worldwide Electronic CFIDS/M.E. Action Network
[WECAN existed between 1996 and 1999.]
Stories from People with CFIDS/M.E.
(members of WECAN)
Appendix A: How Bad IS Bad? Appendix B: The Need for Diagnostic Criteria for before "The Crash"
Appendix C: Disability Struggles
Appendix D: Three PWCs
Go to the CFIDS/M.E. Information Page
Mary Schweitzer's Essays on CFIDS/M.E.
Mary Schweitzer's Testimony to CFSAC and CFSCC