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Statement by

Mary McKinney Schweitzer, Ph.D.

Assoc. Prof. of History
Villanova University
(on medical leave since January 1995 with CFIDS)
President, WECAN, Inc.**

me-cfs@comcast.net
**Note: As of June 1998, Mary Schweitzer is no longer associated with WECAN.

Presented to the third meeting of the

Chronic Fatigue Syndrome Coordinating Committee (CFSCC)

Department of Health and Human Services
The Federal Government of the United States of America
Washington, DC.
April 29, 1998


I would like to thank the chair of the CFSCC for giving the public time for testimony. My testimony today will be divided in two parts. First, I have brought a list of comments from the members of WECAN. I have also appended written testimony that some members sent for this purpose (Appendix 1). I then want to focus on the issue of information and the public need to know. Yesterday's research conference on pediatric/adolescent CFIDS was an excellent start, and I applaud the committee for having organized it.

Comments from the membership of WECAN:

  1. Change the name.
  2. HES should request that ERISA be amended so that giant multinational insurance companies cannot hide from damages when they deny long-term disability coverage to honest workers who have become disabled by the CFIDS/M.E.
  3. Problems continue with SSDI. There has been little change in the routine that a person stricken with CFIDS/M.E. must go through for SSDI: one-two years for a "quick" approval; three-four years for appeals to the ALJ level. Most cases are not settled until the ALJ level, at which point they are finally approved. In the meantime, what is an honest citizen who has been rendered an invalid to do for an income, and what is to happen to his/her family? Bankruptcy is a common topic of discussion among patients with CFIDS/M.E.
  4. Stop trying to nail CFS as a psychological disorder, writes "J". Certainly we have gone far past the region of diminishing returns with regard to all the research that has been done with regard to socio-psychological causation. When there are conferences, allocate only the number of spaces to authors positing some type of psychological causation (to the disease or its length) as this subject accounts for pages among all refereed journal articles on CFS. It appears to us that far less than 50 percent of scholarly published articles on CFS concern psychological causation, yet that topic seems to receive 50 percent of the space at public events. We would like to see some balance, please, and we would like to see scholarly deference on the part of the sociopsychological theorists to the current literature in refereed journals on the physicality of the disease.
  5. Please make CFS a reportable disease according to the CDC definition. It is critical that we start tracking it. Furthermore, making it a reportable disease would be a step toward better diagnosis and care of CFIDS/M.E. patients at HMO's and university clinics.
  6. Medigap coverage should be offered on an equal basis to patients receiving Medicare from Social Security Disability as patients receiving Medicare because they are elderly.
  7. Firmly and directly address the continuing public contempt for CFS and CFS patients. In the past couple of weeks we have seen an article in the Reader's Digest, called "Bad Law or a Law Gone Bad?" that listed examples of abuse of ADA privileges, including "chronic fatigue syndrome" along with "body odor" as a condition too silly to believe accommodations would be reasonable. The FOX tv show "King of the Hill" had a similar anti-ADA show last Sunday that included a female worker who spent the entire episode on the couch with "yuppie flu", which was supposed to be a hilarious joke.
  8. Study, recognize, and name the types of the disease. Those who have lived with and worked with chronic fatigue syndrome know that, like Multiple Sclerosis, it presents itself in different forms. We would like these recognized with diagnostic criteria and official nomenclature.

Information about CFIDS and the Public's Need to Know

Thank you for completing the questionnaire I handed out earlier. I'm sure many of you knew what it was, although I had disguised it. This is the list that psychologist Katrina Berne uses with patients who have CFIDS. So the part about "how many of these can be symptoms of CFIDS" has a very easy answer: all of them.

Many of them can be symptoms of other diseases that are also serious, so it is important that a physician test the patient for everything that could possibly fit the profile resulting from this questionnaire. However, in practice we are finding that this step is not taking place. HMOs do not want physicians to order tests that turn out negative, even if the responsible physician should order these tests when presented with those symptoms. Here, then, is something that should both be stressed, and that the government must take a proactive position about: HMOs must not prevent the proper testing of a patient with symptoms that can be labeled CFIDS, but could also be signs of other treatable illnesses.

A second thing that we are finding in the field is that many HMOs and hospital clinics refuse to diagnose or treat CFIDS. Indeed, Dr. Buchwald has noted that they are seeing more patients at the University of Washington clinic because patients with CFIDS are not wanted elsewhere. Again, the government must take a proactive stance. If an HMO or a clinic or a hospital receives any government funding whatsoever, then they should not be permitted to deny the existence of chronic fatigue syndrome as defined by the CDC. Can anybody think of any comparable situations? The statement "I don't know how to treat CFIDS" might be acceptable, in which case the HMO must send the patient to someone who does. But how can an institution that receives income from the federal government make the statement that they don't "believe in" a disease that has been characterized by that government as seriously debilitating?

Now, back to the questionnaires. Both the CDC and NIH handbooks list only the research criteria - six months of debilitating fatigue, and four of eight specific symptoms. But that is not my disease. THIS LIST is my disease. The clinicians in this room hand out lists such as this to their patients. The patients in this room have all filled out lists such as this.

This list, or any other commonly used list of symptoms for CFIDS patients, should be in the new CDC booklet on chronic fatigue syndrome. It should also be in the NIH's physician information brochure. That is the first step toward understanding this disease. Dr. Bell once called it the disease of a thousand names - in reality, it is the disease of a thousand symptoms.

The next step that physicians need to know is what to do when they find certain clusters of symptoms in CFIDS. I am sure that the three physicians on this committee can fill you in on that part. There are some differences among specialists, but by and large we are finding surprising unanimity in many areas.

Finally, physicians are not the only ones who need to see this list, and need to understand this disease. It is well past time that the public was informed. My little informal study shows that there are a lot of things that we agree on in this room. It is wrong to be withholding it from the rest of the nation's citizens.

Last October, Dr. Reeves presented information to this group stating that roughly 400,000 American adults have the disease CFIDS. He stated that the physician-diagnosed group CDC has been studying is 90 percent white female. Then he added that research in Seattle, San Francisco, and Chicago has shown that the disease is an equal opportunity threat: people of color are as vulnerable to this disease as those who are white; similarly, the disease knows no income boundaries. Furthermore, the ratio of male to female victims is closer to 6 to 4 than 9 to 1.

Let us imagine that every white female in the United States who has the disease, has been diagnosed with the disease. The information we have tells us that white women should only represent about 120,000 patients. Roughly 13,000 men in the total population of CFIDS patients would have been diagnosed. That means that we already have enough information to know that 267,000 U.S. citizens are suffering from a severely debilitating neurological disorder and have no clue as to what it is.

What must happen to someone who has this disease but is undiagnosed? People lose their jobs for nonperformance, and with the loss of their jobs comes loss of health insurance. Family members get impatient with them, and some families break up.

What else do we know? We now know that the six months for diagnosis is not six months for becoming functional again. The best scenario is one year of serious illness, then a year of recuperation until the patient reaches "remission" (80 percent of former capacities) after two years. Dr. Reeves tells us that after 5 years only 45 percent of patients will have reached this stage; 5 more years adds only 10 percent more. So after 10 year, 45 percent of patients will remain at 50 percent of their previous capacities or less.

One quarter of a million Americans need to know this information. It would be nice to be able to say we know the cause and we have the cure. But until then, it is downright criminal to leave them to suffer alone, in ignorance.

In the United States, the public has a right to know what the government has learned. The CDC should not behave like the CIA.

What do we know? We know about this symptom list. We know about the demographics. The very least that the American public is entitled to know - NOW - today, this evening, tomorrow morning, as soon as you can get the press to come to this building - is the information I just presented to you.

Whatever is holding you back, it cannot be anything close to the suffering of a person with this disease. It is long past time to do the right thing. Let the public know.

-- Mary Schweitzer, President, WECAN**

**Note: As of June 1998, Mary Schweitzer is no longer associated with WECAN.

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APPENDIX: Testimony appended at request of authors

Noella's story
[This was sent to me unsolicited because of my website; I get a lot of letters like this because they don't know where else to turn. I asked her if she would mind my adding this to the testimony as an example of how lost people with CFIDS are out in the heartland.]

My name is Noella and I am a 22 year old stay at home mom of one. For the last two months I have been feeling so fatigue and even though I sleep 8 sometimes 9 hours and take naps during the day I wake up still feeling like I have never slept. I have some of the symptoms that one may have with CFIDS.

-- Unremitting, profound fatigue not alleviated by rest.
-- Sore throat, painful and or swollen lymph nodes
-- longed generalized fatigue after levels of exercise that would
         have easily been tolerated prior to onset of chronic fatigue.
-- Sensitivity to light, forgetfulness, excessive irritablity, confusion,
         difficulty thinking, inability to concentrate, secondary depression
-- Sleep Disturbance (insiomina)
-- Nausea
-- Unexplained weight loss and gain
These are the symptoms I have. More so Fatigue then any other symptoms. I wondered what kind of doctor would be good to see? I have had blood tests done on everything basically and all came out great. I have seen a doctor for depression but non of the medications are helping. I still feel so tired all the time. What can I do??

Noella F


Sharon's testimony:
I have had fm (fibromyalgia) since 1986. I was told that its all in your head from deep emotional trauma. I didn't get diagnosed until 1993. It was 7 years of self-doubt and feeling like I was crazy or bringing this all on myself. I was a nurse and veteran when I first got sick. I also had a 2 1/2 yr old son and a baby on the way and working in a local hospital. I was trained in the army during Vietnam. From my background I knew that something was very wrong. I had severe chest, shoulder and neck pain, weak, trouble walking, trouble with balance, had no stamina, migraines, blurry vision, confusion, mental fog, other symptoms. I could barely take care of my kids. I was unable to return to work that I loved. It tired me out to take a shower sometimes. All my energy was focused on my kids. Now they're 12 and 15. They don't remember me not sick. Please continue your research into this area and push for other investigations. We need this so desperately. We need people to take us seriously and really listen.

The CDC, NIH and various other agencies have not taken us seriously. We have come a ways but there is so much further to go. I believe that we need to educate as many people as possible. We need a cure and at least treatments that work. There are many people unable to get out of bed. People that are still wondering what is wrong with them. Words can't say enough. We need research and help.

Thank you
Sharon


Gayle's testimony:
I fought to stay in work for 5 years after onset because of lack of knowledge and diagnosis. This has led to two things:
-- no hope of full recovery at this time (per my MD's)
-- not getting LTD at all!!
Living single on less than I made a month for a year as opposed to 60-80% of my salary (which was VERY nice for a woman in her late 40's per the should be at least making your age x $1,000 rule of economics)

- Gayle Babykin, former marketing executive


"Debbie's" testimony
I am in my second year of an FMS/immune system dysfunction. So, I am a novice to all the acronyms and the whole scope of this DD (There! I used one!). I'm angry and very frustrated! I've been fired from 2 jobs because I'm "too slow" and then denied unemployment!!! Large companies now hire through temp agencies - avoiding all the benefits, etc. and having the luxury of never giving a raise by not "picking up the temp employees contract after 90 days."

In GA, employees have NO rights! The state favors the employers. So, I've been out of work for 6 months, until last week, when I got a PT job at a local church at far less pay than I used to command. The GA D of Rehab. Services put me through the mill in order to accept me for their help........I don't "LOOK" sick. It has been very humiliating. My mind still works (as long as the "fibro fog" stays away) even if my body doesn't! I thought I had some value after 25 years of experience......but it showed me another thing!

I hope we'll be able to save our house. Say a prayer for me.


"Susan's" testimony:
Dear Sirs:

I have been diagnosed with chronic fatigue for the last five years. I had to leave my job out of desperation about one year ago. I plan on filing for social security disability soon and I was wondering if you can give me some information on the proper procedures since it is so hard to find any doctors or lawyers that are knowledgeable on the subject. I have been fighting to retire from my job for retirement disability for the last two and a half years and am going through hell trying to get it. It is frustrating and very stressful and any help that you can offer me would be appreciated. Thank you for your time and help.


"J.'s" testimony:
Number One:
I want them to stop trying to nail CFIDS as a psychological disease. I have both NMH and low immune function--both testable physical manifestations. This IAYH bull only aids unscrupulous insurance companies to refuse payment to policyholders or to limit it to two years.

The government has got to stop aiding and abetting the insurance companies. I don't think taxpayers should be subsidizing insurance companies. Taxpayers are subsidizing them because for every person denied LTD or medical benefits, they must seek assistance from the government in the form or medicaid and SSI. Most of us would not even have applied for SSDI except we were forced into doing so by our LTD companies. Every dollar SSDI pays me gets deducted from the amount I receive from my private LTD carrier.

Getting medicare was a godsend to me. I was losing my medical insurance except for a horrible HMO plan I was stuck with after COBRA which cost me $600 a month with no prescription benefits. Naturally, I still have no prescription benefits because the medigap programs offered to disabled people are hopelessly inadequate.

Number Two:
We want the same Medigap coverage as the seniors with the same price tag. Disabled people are discriminated against by the insurance companies on the Medigap policies because the government does not mandate that they give us the same coverage. This is definitely age discrimination.

Number 3:
Get rid of the ERISA language that allows unscrupulous long-term disability insurance companies to not pay claimants without fear of being sued for both benefits and punitive damages. This is a situation where the States give us more protection than the Federal Government.

Number 4:
Change the name. Make it sound like the debilitating disease it is -- not a cocktail party topic or a source of new material for the Tonight Show.


Danya's Story - April 1998
[Note: It took great effort for Danya to write this testimonial, and it arrived at my mailbox in several installments. Mary Schweitzer}

I have about the best-documented case of CFS anyone has ever seen. Confirmed by 2 of the top CFS specialists, including abnormal labwork and very abnormal brain scans. I even passed an IME with a doctor my disability made me go see (and you *know* his job is to prove I'm fine), whose records indicated that barring major treatment developments in medicine, he had no expectation I would ever recover or even improve. I was even evaluated by vocational rehab folks, found me completely disabled. And the list of treatments I've tried literally includes just about every treatment ever tried for this DD (including Ampligen, which was disappointingly ineffective).

Nevertheless, my Social Security Disability application was denied. Inquiries to SSA were answered with a standard reply of how the state agencies make disability determinations. It was clear that the caseworker did not even look up my file. Faxes to several other SSA officials whose names were provided by The CFIDS Assoc. remain unanswered. My attorney advises me that it may be best for me to establish residency in a different state, because the judges in this county are so ignorant about CFIDS. Most days I am not well enough even to walk my own dog; how am I supposed to move somewhere just to get SSD, without which I cannot get Medicare? I do not even have a date yet for my ALJ hearing, and am told it will probably take a year to get before a judge. What am I supposed to do about health insurance in the meantime?

I spent my entire "healthy" life playing strictly by the rules in every sense, always determined to contribute to society, to this society, American society, the only society in which I truly believed. I would never have imagined that in this country, in the final decade before the New Millennium, any citizen could be treated this way. I face a medical system wholly incapable of handling anyone with this illness (and not compelled to by any regulatory agencies), insurance companies anxious to avoid/terminate anyone as sick as I am (and not prevented from doing so by any regulatory agencies), a society that remains wholly uneducated regarding my condition (and unlikely to change given the absence of efforts to increase awareness by any HHS agencies ), and multiple government programs whose policies and actions are negligent at best, and malignant at worst.

I never expected to be treated like a criminal, but I know that I am being punished. I just don't know why. I thought that contracting an illness that left me totally disabled would be the tragedy of my life...and I was right. But I never would have expected the degree of insult that could--and would-be added to this injury, and that it would be that combination that often proves insurmountable, even fatal. I have watched people lose their lives to this hideous combination....watched them be turned out of their apartments because SSI had not come through yet; watched them go without medical treatment because they could not afford insurance; watched them be committed to psychiatric hospitals by doctors who had not even run preliminary bloodwork; watched them lose their marriages, their children, their friends, and finally their self-respect; watched them lose the battle with chronic pain that is responsible for so many suicides every year. I am not given to melodrama: I can provide names and dates for every situation cited.

At least if I were a criminal, I would be entitled to the services of a public defender. In order for me to gain access to the services I rightly deserve, I would need to hire 3 separate attorneys right now. I can not afford to do that.

Sincerely,
--Danya, Oregon

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