1) Personal history
2) Early Advocacy
3) Washington
4) CFIDS Association Takes Over Advocacy
5) Burnout
6) The Uncertain Future of advocacy
I was deeply involved in early CFS advocacy. There are some important things that I think everyone deserves to know. I am going to start with some personal history of my ME/CFS to show experience and perspective, then move into early and ongoing advocacy that is more relevant and hopefully more interesting. This has a level of personal things that I don't feel comfortable revealing. However, I'm doing so because it seems to be the best way of being engaging and persuasive on the internet. Due to factors including various versions of CFS history, I can only hope that this is believed. It's a strange consideration to wonder if stating some facts may create doubt and disbelief. I've never felt that it was important for people to know who accomplished something, only that it was accomplished and progress was made. Unfortunately, that has left me with little credibility.
I'm sorry to have to leave out some people who richly deserve accolades for their contributions in the history of ME/CFS. This is due to time constraints with upcoming events in ME/CFS advocacy, and the fact that I write very slowly and difficultly, and not very well. I started writing this months ago. After 39 years of ME/CFS, my brain isn't what it used to be. I'd like to take more time to make sure it doesn't have mistakes that some people will nitpick, but there isn't time. My goal is to stimulate more effective advocacy ASAP.
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1) Personal History
I had a normal childhood, actually better than normal. For the record... for the arrogant, patronizing Freudian psychiatrist sophists, corrupt or not, presently trying to drown out legitimate science in ME/CFS research... there was no childhood abuse or trauma. Prior to my illness beginning at age 16 in 1970, I functioned at a well above average level physically, mentally, socially, etc.. Beyond that statement, I feel that it would be bragging to go into much detail. Life wasn't just good; it was great.
I guess all of us have given a lot of thought to when we first got sick; I certainly have. In the fall of my junior year of high school, I was in a physical conditioning program prior to basketball season. It mostly consisted of running what I now consider the hauntingly named "fatigue drills". One day my vision blacked out while running those, which had never happened before. I was also getting other symptoms. My sister had mononucleosis the previous year, and my mother recognized my symptoms and talked me into taking the normal test for it. I don't know what kind of test it was, but it was positive.
My coach brought me the bad news as I was at my locker getting ready before practice started. I was so angry to learn that I would miss the first part of the season that I hit the row of steel lockers hard with both hands. I had always assumed that they were bolted to the floor. Fortunately, the guys on the other side caught them as they were tipping over on top of them. Six weeks of no basketball on a championship team that needed me seemed like such a big loss. Six weeks. Meanwhile, 39 years later...
Right from the beginning, even with the diagnosis of mononucleosis, I started getting the prejudicial attitudes and abusive behaviors from some people that we all experience with ME/CFS. People that I considered friends behaved badly: some very badly. The same teacher who had recommended me for the Eagle Scout award the year before tried to get me kicked out of the scholastic National Honor Society. Other students told me I was faking it, etc. etc. etc.. I eventually learned that I prefer to go to extraordinary lengths to hide my illness as much as possible. Even when that was bad for my health, it usually made life easier and more tolerable.
The mononucleosis symptoms were especially bad and lasted several months, but they gradually faded away enough so I could function fairly well. I stayed in a good remission through my senior year.
I wanted to study aeronautical and astronomical engineering and get into the space program. In retrospect, the 19 credit hours I was given including the weightlifting class guaranteed the very long and severe relapse starting in the middle of the first semester. I tried four more times over the next five years and still couldn't finish a full semester. A man my age that grew up near me and went to the same university has gotten three rides on the space shuttle. My dream died hard.
When I explained my health problems and requested taking one less class than normal, the dean refused and made new and impossibly more difficult rules for me. That was after extensive complaining about partying all night and sleeping all day. Not about me; he was complaining about his own son. In effect, I was kicked out of the university.
The dean told me I should go to the Mayo Clinic. I told him I didn't think they could do anything for me that my personal physician hadn't already done. When I went to Mayo not long after that it turned out I was right. The staff doctor, after more testing and specialists there, told me there was nothing wrong and that I should forget about it, go home, and live a normal life. 15 years later there was a quote in a major newspaper from the head of Infectious Diseases at the Mayo Clinic with an ambiguous statement about the existence of CFS. It was the same doctor.
I tried pushing myself harder after that . In 1977 during a deceptively good partial remission I had an opportunity to go into my own business, manufacturing a small line of products. I grew up working in my father's small manufacturing business so I knew about that. I took the chance and soon greatly regretted going into debt and many more relapses from all the necessary work. However, I did learn how to maximize my output within the bounds of my illness. Having one or more part-time workers when necessary was best.
Going to more doctors got to be very frustrating. The bad attitudes and behaviors from doctors and many others in my life got more difficult, and it was clear that my health was declining. I went to the best local psychologist who told me there was nothing wrong with my mind, but very regretfully I did not stop there. A relatively brief encounter with some major Freudian psychs, along with a lot of reading about that business, taught me a lot. I would have to write a book to adequately describe that, but it is a very deeply motivating factor for me. The first of those "adventures" was that even though I was negative on a blood test, one psychiatrist recommended that I try lithium and antidepressants and said it wouldn't hurt me and might cure me. I stopped after about three months. It didn't surprise me years later when I read about other ME/CFS patients who had killed themselves while on those same drugs. At least for ME/CFS patients, those can be REALLY bad drugs.
I developed a deep desire that one day my illness would be recognized as a disease. I assumed that if that happened people would understand and treat me better. That was a big mistake in some cases.
In 1980 I met the first other CFS patient that I was ever aware of. She was a nurse and had gotten sick the same year I had, and so had her sister. Their mother had been sick far longer. I have known them ever since and have seen what happened in their lives. It also became obvious to me that there were many other patients with the same symptoms. Eventually I classified the misunderstandings of our illness as lazy, crazy, and stupid. One of the relatively benign things was when people thought I needed to just live life more fully. Although I was already doing that as much as possible, I started calling it "have fun, but don't have too much fun". It was my envelope theory. The "too much fun" caught on, and it was amusing watching it spread as a somewhat anti-puritanical meme. One time on the news there was an exchange between Houston and a space shuttle. After long and loud laughter from the whole shuttle crew, the message from Houston was "It sounds like you guys are having much too much fun up there". Meanwhile, back here on Earth, gravity still sucked.
One evening in 1985 I heard a brief news item on the radio about two papers that had just been published In the Annals of Internal Medicine that had a brief description of symptoms that sounded like my illness. I have to admit I felt a chill go up my spine. The next day I went to the nearest medical library and got copies. Arriving back home, a longtime friend was waiting for me to go on the double date I had arranged for him to meet the girl he later married. I said I wanted to take a couple minutes to skim through the papers and explained that they were about the illness I had long before told him I had. His immediate response was "Oh, that's all in your head!"
That was the beginning of a very difficult period In my life. I got the same type of response from some other people. It was very difficult to deal with because it was followed by some really bad behavior. They were people I had considered friends for many years. Sometimes I had mentioned on a need to know basis that I had a lot of fatigue since I had gotten mononucleosis at 16. That hadn't caused any big problems with them previously.
Having the scientific sounding Chronic Epstein-Barr Virus name to use (even though I was then EBV negative) didn't make things better. I thought people would like to know that the illness that had damaged my life so much had been identified and was being studied; and that perhaps a treatment or cure would be found someday. Eventually I ended those relationships and have not regretted it. I hadn't changed; they had.
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2) Early Advocacy
I had a subscription to a magazine that had an article about CFS. The following issue had a letter to the editor by Ted Van Zelst with an address that I wrote to and participated in a survey he sent. Eventually newsletters from support groups gave me some idea of how things were shaping up.
A nearby town had one of the first support groups, and there I learned of an upcoming conference in Kansas City in 1988. After attending it I felt that finally dedicated intelligent healthy professionals were studying the problem and that I didn't have to spend so much effort trying to find the answers myself as a sick amateur. Some of them are still at it. The roots of what is now the IACFS/ME started there.
I had previously talked to the patient who started that Kansas City group, Janet Bohanon, and learned to some extent about the situations in advocacy and the groups. Although there were good people doing their best, it was clear to me that there were strengths and weaknesses and problems within and between the various groups. She had learned about patient groups when she was misdiagnosed with Lupus and volunteering for that. Janet looked very tired at the conference, and I knew she was living on a low income. When I got home I sent her a check for $200 with a note asking her to use it on herself, take it easy, and please don't burn out. She sent a note back saying that they had completely run out of money and used it to pay the postage on a bulk mailing to all their members.
Years later, when I was living on Capitol Hill working on advocacy and doing the lobbying for CFS, I found that note and letter in my files and realized that it was the letter asking their members to write letters asking for government action on CFS to be sent to Rep. John Porter. Those were letters that were taken to the committee meeting (the markup) when they wrote language to make that happen. It still makes me smile to think that I was affecting advocacy before I was even aware of it.
Later that summer I visited the Portland patient group and met Gidget Faubion. I thanked her for her efforts, but it was obvious that she was burned out and it looked like the organization might not last, and it didn't.
The next time I visited the Kansas City group Orvalene Prewitt had largely taken over and was being very influenced by John Renner M.D. John's interest was medical fraud. I was concerned with their new emphasis and their uncritical support for what the government agencies were doing about CFS. I later learned from Janet after she resigned that they were at that time losing the vast majority of their members. She also told me that Orvy's attitude had changed after she got involved in Washington activities. Unfortunately, that is not uncommon.
My first of many trips to the CFIDS Association in Charlotte was in late 1989 when the office was still located over Marc Iverson's garage. Overall, I was impressed by the way it was running on my early trips there. Creating an organization with mostly CFS patients was a difficult and complicated task, especially to deal with such a large problem that already existed. My long experience with ME/CFS and small organizations made it seem to me that the CFIDS Association had staying power.
I had known that most people wanted the CFIDS Association to take the lead in advocacy. They were taking an appropriately critical stance towards the government's inappropriate response to CFS. Marc said Rudy Perpich, who was then Governor of Minnesota, had just asked them to become the national advocacy group. They had declined due to not having the resources at that time. A separate organization was planned that later became the coalition CACTUS. Marc did say they saw the need to form state groups. I told him I was planning to get involved much more, but had to get my affairs in order. Mark also told me that he originally wanted to name their group the Myalgic Encephalomyelitis Association, but that he was outvoted.
My next visit was right after the 2 Golden girls TV series episodes on CFS had rerun with the CFIDS Association address and telephone number at the end. Another volunteer came in and along with the two staff persons we went through many bags of mail and recorded requests for information. Many phone messages had poignant statements of desperation.
It became increasingly clear to me that there were enough continuing problems within and between the CFS groups that it was significantly hindering progress. I decided that the most useful thing I might be able to do is to get people working together better. Since I was going to set everything else aside in my life for at least a couple years, it seemed like I could travel around as necessary and work on that.
I went down to Charlotte again a week before the CFS conference there in late 1990 to help. There was a great feeling of anticipation and hope. The Newsweek CFS cover story issue came out then and sold out.
http://www.newsweek.com/id/128028 By chance I met Barry Sleight there. After I thanked him for the work that he was doing in Washington, he told me that he had already retired as the CFS lobbyist. It really surprised me, and I immediately started thinking about moving to Washington because I understood the importance of having somebody there. My father had previously successfully lobbied a congressman from a nearby district on a controversial national health care issue, and we had discussed it as it was happening. I had also been very interested in national politics since grade school, and thought that the US should lead the world in ME/CFS research.
At the conference the hopes were high for the future of activism, but I was concerned that people expected more than would be possible with patients doing the vast majority of the work. My 20 years of living with this curse of a disease had taught me a lot about the inescapable limitations it imposed.
In order to raise money, I took a loss to sell my home quickly, made arrangements to gradually sell out my remaining business inventory, then put my belongings in storage and took a long road trip to visit all the major groups. From Kansas City, Los Angeles, San Francisco, Sebastopol (CACTUS), Portland, and then finally moving to Washington took months. I didn't realize how well organized some other groups such as Massachusetts CFIDS were or I would have visited them too.
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3) Washington
The next two years in Washington were far too eventful to adequately write about, especially with my slow and poor writing abilities, but some things are probably important and relevant enough to try to cover them now; at least in my opinion.
When some people hear the word lobbyist they start holding up crucifixes and reaching for wooden stakes, but I found it very interesting and not immoral to just be the volunteer patient advocate and lobbyist. I got to know Ted Van Zelst and how much he and his wife Louann had done and were still doing in starting and building CFS advocacy and activism. It would take a book to describe it. Hillary Johnson has written about it in Ostler's Web and on her blog after Ted died recently. I'd like everybody to read it along with my comments there to know what we all owe to the "father of CFS advocacy" and to learn more about how CFS advocacy should be done.
http://oslersweb.com/blog.htm?month=2009-07
Barry Sleight was still living in Washington when I moved there and he helped me get off to a quick start and gave me a wealth of very useful information and advice and worked with me for a while. His finances had been exhausted by his mostly uncompensated volunteer lobbying for CFS, and I wasn't able to help him much with that, although it's some of the best money I've ever spent. Barry didn't get the recognition or support that he deserved, but that's par for the course in the realm of politics and CFS. I understood his other reasons for not continuing. It wasn't because of poor health. There were a couple of times when I wondered if he had the same disease I did because his stamina was so much better than mine. It didn't surprise me when he later told me that he had gotten diagnosed twice with MS.
Ted was a great mentor to me along with his continuing efforts. Living four blocks from the US Capital building makes for an interesting neighborhood. I became totally immersed in advocacy and did almost nothing else. My health after 20 years of ME/CFS certainly wasn't good, and I needed to spend an average of over 20 hours a day in bed by that time. I could function well for short periods of time on Capitol Hill business as long as I stayed adequately rested. The amount of work was overwhelming, and I made a conscious decision about whether to spend my very limited energy getting things done or reporting to everybody that I had gotten things done. The choice seemed obvious at the time.
Along with Ted Van Zelst, I concentrated the most on getting the continued and increased support of Rep. John Porter and worked with his dedicated Legislative Aide Mike Myers. It became obvious how unfair the appropriations process was in how it pitted all illnesses against each other for funding, and I started saying that the overall NIH budget needs to be increased substantially. Against all odds, a few years later John Porter went from the lowest ranking member to the Chairman of the Labor HHS Appropriations Subcommittee and led the successful effort to double the NIH budget. CFS did not get its fair share of that increase. The NIH funding levels for CFS are now projected to fall to 3 million (vs 176 million for MS; 50 million in 1992), below what they were when I was in DC back then; the only one on this long list that will go down.
http://report.nih.gov/rcdc/categories/
Joan Sutherland was trying hard to get CACTUS organized into a viable and lasting advocacy coalition, and I really wanted that to happen. I encouraged her, but I had doubts from the beginning that it was going to last for many reasons. She did get some very valuable work done toward the CFS provisions in the NIH reauthorization bill that was eventually passed into law. Exactly how that happened is another story, but I paid Tom Sheridan for that month with thanks. Ted Kennedy did us a favor. Politics is funny sometimes when it works out right.
In 1991, we were having some successes. The NIH had let me know that they were going to fund three CFS research centers plus another RO1 grant. We got specific and extensive language for the NIH, CDC, and the SSA in the Labor, HHS Appropriations Subcommittees yearly process and an increase in CDC money, but as always it was just report language. My desire to increase overall advocacy efforts grew as the need became more and more obvious. I was worried that the CDC would announce very low prevalence numbers from the obviously flawed CFS surveillance program. I had been just telling people in Washington that I thought at least one million people had CFS, and a lower figure from the CDC would damage my credibility with some people, not to mention the credibility of the entire CFS community. Credibility is extremely important in lobbying. There was also the insurmountable problem of a CFS patient's credibility as the lobbyist with some people who didn't believe CFS was real.
We all knew there were big problems at the CDC, including financial mismanagement. Walter Gunn retired from the CDC around the end of the year after telling me that he wasn't going to retire, which certainly didn't give me much hope for any improvements there. I had told people that I would continue in DC for as long as I could, but that I was too sick to do an adequate job. I went down to Charlotte again to talk to Marc and Kim. The CFIDS Association still didn't want to assume the responsibility for national advocacy due to lack of funding. I didn't know anyone who didn't want them to do it, and I had been talking to people about it. That's certainly not to say that none of us thought the situation would be without problems if they did agree to do it.
Then I went to Chicago to talk to Ted and Louann Van Zelst. It was great to finally meet them in person. We talked over the situation fully and I went back to Washington. Not long after that Ted called and said he had talked to Marc and offered to donate $10k and that the CFIDS Association was going to contract with The Sheridan Group. A public-policy advisory committee would be set up with Ted and I on it. Massachusetts CFIDS donated another $15k, and Ed Taylor donated $40k/yr which had previously gone to a researcher that had received one of the NIH Center grants. I kicked in a meager $1k to match my meager finances. Together that more than covered the first year's costs.
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4) CFIDS Association Takes Over Advocacy
My hopes were up for several months as things seemed to be slowly shaping up. After turning most of my responsibilities over to Tom Sheridan and Kim things were relatively easier for me. I spent time talking to Jerry Crum about advocacy and the need for more support from his Nevada Senator Harry Reid, who was our person on the Senate Labor HHS Appropriations Subcommittee. I had moved to an apartment one block away from his office primarily for that reason. Jerry became very enthusiastic and got other people in Nevada to help, and it worked. The Senator soon became a good supporter and is now the primary congressional supporter. His Legislative Aide had been a woman who was hard to read. I still don't know if she believed that CFS was real. There was soon a new one, and Sheila was very good. Unfortunately, at present, Reid's reelection polls don't look good, and relying on one elected person is always unwise.
A Public Policy Advisory Committee of the CFIDS Association was formed and we met in Charlotte. Ted also came to DC to give our testimony before the House Labor HHS Appropriations Subcommittee with John Porter there. Kim finally came to Washington to do a day of lobbying with Tom and I. Plans were being made for the important oversight hearing in front of Waxman's Health Subcommittee.
As the Albany conference in the fall of 1992 approached, I started getting uneasy feelings. It's hard to describe, and I'm not going to get into it much because it might just sound personal or petty.
I drove up to the conference and picked up Tom Hennessy in Connecticut on the way. I had been suggesting that an advocacy meeting be held at the beginning of conferences before patients got too tired. That was done and it worked out very well. It was standing room only and I wish everyone could have been there and felt the excitement and hope at that time.
However, there were some other things that worried me that I won't get into, other than to say I wasn't asked to be involved in any way. I had carefully built up our goodwill with the NIH, but it was severely damaged at that meeting in a way that I could have easily prevented if I had been consulted.
The next day we had a meeting of the expanded Public Policy Advisory Committee (PPAC) and finally developed a comprehensive public policy agenda. Although that was good, there was a major surprise. When Tom Sheridan, who was leading the meeting, started talking about the oversight hearing, Marc announced that it was not going to happen now. Kim obviously at least knew about it. I didn't object at the time because I thought it was just a temporary postponement, and we were rushed for time to complete the agenda. In retrospect, I wish I had objected and offered to pay the extra $9k it was going to cost. Even though it would've taken most of the money I had left, that was of comparatively little importance and I have regretted it ever since. I kept thinking they would eventually realize how much it needed to be done. It was a key part of the strategy and the primary reason in the short term that I had wanted the CAA to take over advocacy. Tom Sheridan had done similar hearings for AIDS. They have to be done carefully and with adequate preparation. I didn't feel up to doing the task by myself.
In a masterfully Machiavellian move, the CDC had released their ridiculously low prevalence figures of 3000-10,000 just before the conference. It effectively killed national press coverage. IMO, it has never recovered from that. I was very relieved to hear Lenny Jason's talk about their prevalence study that indicated over 800,000 patients over the age of 18.
Others have written about the fireworks at the public sessions of that conference, but there are two other tales I'd like to offer. Gail Kansky was on the PPAC, but when we came back from a break, she announced that she didn't think she was qualified (I disagreed) and had asked Bonnie Gorman to take her place. That impressed me. Also, I gave Nancy Kaiser, who was not on the committee, a ride to the airport that day. She later wrote about her concerns at that conference. It's on the NCF web site:
http://www.ncf-net.org/forum/fall-4.htm The funny thing is that I had similar feelings and we didn't talk about them at all.
I've never lasted through a whole CFS conference. I ran out of energy in the middle of that one and after 30 hours in bed got up feeling pretty good for the drive back. Tom Hennessy had made it through the whole conference, but I think he was running on adrenaline fumes. As we were very slowly headed up a long steep hill in my nonnuclear powered VW Golf diesel, I talked to Tom about an idea I had. He had a substantial understanding of lobbying and advocacy in Washington from living there when his father was a lobbyist. Although we had March as an awareness month, I thought we should have something more appropriate for patients which was a single day for both awareness and lobbying, and that it should be at the right time for the yearly appropriations cycle. He liked the idea and the first thing he suggested was Florence Nightingale's birthday, but neither of us knew the date. May 12 turned out to be a good date. The thing I really like about it is that I didn't have to do any of the work. Tom put a a great deal into it along with others, and it's been interesting to see how it has developed. As time goes by there are more versions of its origins. I was at a support group meeting years ago and someone said it came from an FM group. I wonder what Florence Nightingale would think.
Since I didn't think I was getting much done in Washington anymore, I decided to move back to Illinois that December and work on the necessary job of building grassroots CFS advocacy. Just before leaving DC a few of us patients got together for an evening. We helped Roger Burns stuff envelopes for a mailing to people about how to get involved in a discussion group he was creating on a new communication medium, the World Wide Web. It seems to have caught on since then; although much more slowly with me.
At the time most of the important senators and representatives were in Illinois and contiguous states. When I would visit people and talk to them for an hour or so they invariably became interested in advocacy and wanted to get more involved. After doing some of that for a year I moved back to Washington for several months to try to advance advocacy more, but that did no good, and I moved back to Illinois. I wasn't at all satisfied with the progress we were making, and some other advocates were getting alienated and dropping out. I was becoming increasingly concerned.
