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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Congressional Oversight Hearing ASAP &

Discussion in 'Action Alerts and Advocacy' started by Roy S, Oct 7, 2009.

  1. Andrew

    Andrew Senior Member

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    Hi Roy. Thanks for posting. I am unable to read long posts, but I tried to read most of it. Maybe you could create a list of key events, key people, what we can do now.

    BTW, I lost faith in CAA as soon as I started reading their newsletter and saw the "Faces" display. I perceived them as self-serving and out-of-touch. But I'll continue my membership if you think that will help.
     
  2. shrewsbury

    shrewsbury member

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    Hi Andrew - great idea re a synopsis. Many of us can't read anything complex.
    I love bullets.

    Hi Roy - so appreciate what you did, but, like Andrew, I can't access it. Up to even more work????

    re the CAA Faces -

    I just saw a similar image for the ALS on the NYT (don't think they have the interactive bits) and I think it's the Ning front page has a display of faces.

    I think the CAA is trying to go from being a dusty file full of the 7th hand-written (with feather and inkwell) copies of documents in the back of some Dickensian office to the modern world. It's a big jump quickly, they want to be 'cool' and current, but it's new to them. Their decision-making may not be at its best.

    if:)
     
  3. Roy S

    Roy S former DC ME/CFS lobbyist

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    Sorry, but I'm doing all I can now. You probably didn't get to the first part of the second section at the link where I explain about how long it took to write it.

    The most important part is what I put in the first post on this thread.
     
  4. Roy S

    Roy S former DC ME/CFS lobbyist

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    Someone asked about my article on a CFIDS Association web site and got an answer of sorts. I'd like to say I was surprised, but it's just what I expected. Still, it's disappointing.

    First the unimportant things.

    I I knew I would be outed with my full name as a patient, even now when we have widespread news of a retrovirus with unknown transmissibility and unknown reactions in our society. I hope everyone else knows to NEVER out a patient. There is a patient I didn't mention in my article that would have raised more serious questions about what happened at the CAA several years ago. I don't even know if she wants to be anonymous, but outing a patient just isn't done. Ever.

    My father would have called part of the response being damned with faint praise. Perhaps more contemporary terminology would be passive aggressive and patronizing.

    "CAA~ Just curious what your "line" on this history is?
    http://cfsknowledgecenter.ning.com/forum/topics/unknown-cfs-congressional
    Roy Snow (***) is an important pioneer in CFS advocacy who served on the Association's Public Policy Advisory Committee for several years. The history of a community, movement or event can be told from each participant's perspective and we respect his views on these issues. There was never a scheduled Congressional oversight hearing, although Congressional briefings on CFS were held in 1995, 1996, 1997 and 2008. The CFIDS Association has also held 15 lobby days for advocates to meet with members of Congress and key staff."

    I wonder what most people think when they read that spin about the hearing. Are they misled, and how does it make them feel? It hadn't been scheduled yet because that's not the way it works. I could go into a long story about relevant things that happened with that committee prior to that, but it was before the CAA took over advocacy and doesn't alter the facts.

    Now the important thing.

    Doing even one Congressional oversight hearing now or any time in the future is not even addressed. The whole issue was spun and evaded.

    Why?

    The CAA tried to do one years ago and failed. Obviously Kim knows it should be done. I assume she knows how much even one well done hearing can do. She's been there for 18 years and her salary last year was $177,517.00. She says that advocacy is her #1 interest.

    Why completely avoid the issue?

    I carefully laid out how I think one could be promoted and done to bring the community together. Everybody talks about the need to work together. I don't see nearly enough of it happening. Again, I'm disappointed but not surprised.

    Is another big opportunity with the XMRV news going to be lost???

    It sure is nice to have the WPI for renewed hope. Dynamic new leadership is being welcomed by the CFS community. Among other things, Annette Whittemore spoke about congressional hearings at the CFSAC meeting. She can speak for me any day.

    Update: I wrote the above yesterday. Today Andrea Whittemore wrote on the WPI Facebook:
    "Right now Dr. Mikovits and scientists are in Washington , DC working on all of your questions and concerns. My Mom and Dad are there till November 9 th talking to government officials. The Whittemore Peterson Institute and the news of XMRV is causing quite a stir back on Capitol Hill!!!"

    There's some new folks in town. They look to be straight shooters and they're not messing around. This burned out patient/advocate thinks that is very cool.
     
  5. shrewsbury

    shrewsbury member

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    Roy a million thank yous for keeping going when all was so dismal for years.

    WPI and the Whittemores - very cool indeed:D:D:D:D

    if:)
     
  6. Cort

    Cort Phoenix Rising Founder

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    Congressional Briefing/Hearing - Whether or not a congressional hearing was held in 1992 or 1993 is not a major issue for me at this point. That was 17 years ago! The CAA held a congressional briefing a year or so ago. Its on Facebook somewhere. The briefing simply appears to be an informational meeting at which congressional staffers and congressmen are invited to attend. It was quite an impactful presentation I thought.

    A hearing of course is an entirely different animal; it takes place in front of a congressional committee and is on a specific topic. It would be great to get one altho its also true that congressional hearings take place all the time and most have little impact (so my brother the lobbyist says). Nevertheless it is a foot in the door and could spark things.


    I think we are far too concerned about what the CFIDS Association is or isn't doing and far too little concerned about what we can do. Advocacy is a tough business with this disease; with that I mean its inherently disappointing. Why? Because there's so little response. John Herd - who can find nothing good to say about the CAA - would certainly agree with that.

    I sent several thousand emails to people and advertised the CFSAC event on the front page of my website as the most important meeting in 15 years. I used bold language and ended up with about 50 people interested. That translated into about 8 people at the meeting. About a year and a half ago a group of 'prominent' people tried to form a new advocacy group; it lasted about two meetings. Such is the ability of a bunch of ill people to consistently work on something like that. I can think of several things I would do differently than the CAA but after that experience I empathize with them more than anything else about our paltry advocacy efforts.

    The idea that the CAA 'controls' advocacy in DC is misleading unless you're saying that they 'control themselves'; there simply is no one else up there besides them (except the WPI now apparently). (There are two patient groups in the US that (intermittently) work on advocacy. It would be nice if there were several groups vying for control! Honestly if anyone thinks anyone else is even trying up there -I think they're wrong. I would love to proved wrong :)

    Its a tough business; what has the CAA done?

    • They got the CFSAC panel instated - and then fought off efforts to get rid of it a few years ago
    • They used their connections to further the first CDC scandal
    • They got the Disability Ruling on CFS passed
    • They got senators and congressman involved in helping them uncover the latest dirt on the CDC
    • They've held several congressional briefings
    • They got the CDC to create the first media campaign (ever) on CFS
    • Just as a small thing; they pushed for Wanda Jones to be the liason for the CFSAC committee and she's done wonders really, for us.

    I'm sure they've done more and I'm sure its not enough but look around and see if you can anything that anyone else has done on the federal level - and you'll know why I, despite whatever reservations other people have about them, support them vigorously. We don't have any other options - theres no one else waiting to step into the wings. They may not have done what all you or I might want but they have been working and they have produced results; take them away and you've got a big void to fill.

    I think it would be great if a group of people could create a more hard-hitting less conservative advocacy group than the CAA. I've said that for years and we did try to. But where are the people to do it? (Where are these 'experienced advocates' and what kind of advocacy have they been doing?" Maybe I'm missing something but I don't see much advocacy activity going on. I see Marly Silverman working her butt off. There are people in New Jersey who are working....but aside from them???? Tom Kindlon has his petition and he's always working hard. In the US I just don't see much advocacy.
     
  7. Cort

    Cort Phoenix Rising Founder

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    I was told that Senator Reid said he would do one thing - I guess that means expend some of his political capital - for CFS and the CFID's Association over the past year or so and they chose to have him push the CDC year, get them access to documents, etc. I know another congressman helped out as well with that. That failed! The CDC program remains.

    I'm not sure, tho, who else we have. We do have some supporters but I think we're missing that key person on that key committee who can get things rolling.

    As I noted before they tried to get the CFSAC to back them early in their efforts and they wouldn't because they didn't want to be too confrontational. I doubt that the CAA even thought of the IACFS/ME - since at that point they hadn't inserted themselves on ANY issues. Now they're both being very vigorous. Hopefully if the IACFS/ME can continue to expand in that area we'll have a nice set of strong groups.

    The IACFS/ME is now finally willing but has no money and is run by volunteers. That could obviously only go so far. Suzanne Vernon proposed that an international network of researchers be set up with standardized protocols and data and sample sharing. The IACFS is the natural group to develop standardized protocols and I asked Dr. Friedberg about that and he couldn't imagine them taking on a project like that. The CAA is now developing it themselves.

    Despite the fact that CAA has ticked off people in the past they are active and they are producing results. Who else can you say that about? The WPI and .....

    Obviously there are problems - the CAA needs to be more inclusive and everybody needs to communicate more. I have heard of problems between the HHV6 Fdtn and WPI, the CAA and the WPI, of course the CAA and the CDC, the CDC and the NIH (hate each other). Maybe the IACFS/ME will be the broker that brings everybody together - I think thats a role they want.
     
  8. Khalyal

    Khalyal Guest

    CAA - Patient 00's Perspective

    (Khaly's note - Nancy Kaiser became known as patient 00, when Dr. Peterson intervened on her behalf and she became the first patient to go on the experimental drug Ampligen in 1988. Nancy Kaiser succumbed to the end stages of CFS on June 14, 2008)

    http://www.ncf-net.org/forum/fall-4.htm

    FIRST PERSON: REMINISCING
    By Nancy Kaiser



    I left the CFIDS Association of America (CAA) membership ranks quite a few years ago. A fellow PWC recently forwarded an article to me he thought I might find interesting from their summer 2007 Chronicle written by Kristina Hopkins. I would like to compliment Kristina on her article, "Message to Members ", as, in many ways; it was a cut above the usual empty ramblings and promises found in the Chronicle. Her article was a bit of history regarding CFIDS. I would like to expand and reminisce a bit on her comments as I was mentioned being one of the pioneers. Because this is reminiscing, I wont be focused on one particular subject but a compilation of my thoughts and frustrations as to the direction the CAA chose to take. To quote from Kristinas article "working towards a shared goal" was exactly what we pioneers were doing and after reading that statement I was compelled to write this article as it is quite apparent, through the years, we were betrayed.

    In the late 1980s I felt honored to work along side people like Marc Iverson and had such respect for him and his plans for the CAA. We shared some philosophical conversations, hopes and plans for the future and many advocacy "adventures" our little group of pioneers successfully undertook, plus I had the privilege of being one of their guest speakers at their 1990 CAA North Carolina Conference. Our group worked well together -- no one looking for power, control, money, and attention -- just one goal: the cause and a treatment or cure for CFIDS. There were never the insults, unkind words or battles I have seen now on CFIDS message boards and on the internet among PWCs.

    To begin with, I stopped supporting the CAA out of sheer disappointment and disgust after Kim Kenney McCleary took the helm. Kristinas article was paying tribute to the PWC pioneers of almost 20 years ago and I was privileged to be one of them. I recently was made aware of the number of employees the CAA now have and the huge salaries paid these people and it does not balance or make sense as the CAA isnt any further down the road for our disease than 20 years ago. Marc --how and why did you let this happen? When I dealt with you at the NC conference in 1990 you were the enthusiastic, honest advocate I had always worked with. When we met again at the Albany Conference several years later -- by that time you were with Kim Kenney-- and it was as though you had a personality transplant and Kim Kenney had you in tow. I was shocked -- and not too long after that you resigned from the CAA and I watched the disintegration of a fine advocacy/support organization and the CDC intervention and take over (along with some very poor lobbying by Tom Sheridans group) . Now the best the CAA can do is the "Faces of CFIDS" and this type of PR plus more prevalence studies and disorganized research-- is that going to find a cure or treatment in the near future or is this insuring these CAA employees (who do NOT have CFIDS/ME) job security and a continuing coverup for this disease?? That is not a hard question to answer.

    To add to my reminiscing I would like to say how much I appreciate Gloria Bakers name mentioned as one of the pioneers. Gloria and I were as close as sisters and I am certain many of the later PWCs have not heard of her and there is no one more deserving to be honored more than Gloria. She set the advocacy bar very high and was one of the finest individuals I have ever had the privilege of knowing. The questionable circumstance of her suicide is still a heartbreaker to all who knew and loved her.

    A few more comments and then I will fade into the background again. First, my name was mentioned in connection with being an Ampligen patient. That is a true statement, but I want to clarify this. The drug did help me initially and those participating in the original study were all so thrilled to be involved in a possible treatment for this disease. However, in time it started causing more and more problems. When I was taken off the drug, it was very apparent the drug is not the answer. When anyone asks me about Ampligen my answer is very simple and straight forward. In my opinion, I would never advise anyone to take the drug nor interact with Hemispherx. In one of their patents (patent # 5,958,718) statements were made about my improvement and background which were not true. I reported this to the FDA and there was never a return acknowledgment from the FDA. Also, there has never been a long term assessment regarding my health by Hemispherx as to the safety of this drug and I was on it for five year.-- yet they keep talking about the drugs long term safety record of Ampligen.

    I would like to add the names of two very special people attending the CAA North Carolina Conference who werent mentioned in Kristinas article. One is Elaine DeFreitas whose scientific knowledge and contributions were profound. The other person is Hillary Johnson, the author of Oslers Web. One could always find Hillary sitting quietly and most attentive in the background taking copious notes and asking in depth questions. At that time Marc Iverson and the CAA were giving Hillary all sorts of encouragement to finish and publish her book. I could never understand when the book was ready to go, the CAA was not there for her and their lack of support dealt the credibility of our disease a huge setback -- as those of us who have read her book and know Hillary, appreciate the exemplary work she put forth in writing our saga and how conscientious she was in that effort.

    And last but not least, having been one of the early PWCs, I am still saddened by the changes in the attitude the doctors and researchers who specialized in our disease. How times have changed. There are very few who seem to want a treatment or cure....patents and scientific findings are hidden and money, power, fame, expensive buildings/clinics and control have become the goals. I see PWCs all battling - - it has to be their way and opinion or else and I watch good scientific data and references ignored by patients, doctors and researchers. I can even remember as a guest speaker at the North Carolina conference. I was staying on the same hotel floor as the doctors and researchers who participated in the conference. When breakfast was served in the dining room on that floor -- what was said at the breakfast table regarding the serious of this illness and then what was said on the podium BY MOST OF THESE SAME doctors and researchers later in the day were two different stories. Most did not publicly come out with the truth of this gravity of this illness as they did at the breakfast table.

    It is my humble opinion we, as PWCs, had better clean up our act and look at the data the NCF is presenting on their website and in their newsletters and start working together as the AIDS patients did or we are a lost cause. Remember one thing -- NO ONE AFFILIATED WITH THE NCF IS TAKING ONE PENNY IN SALARY OR ANY COMPENSATION TO DO THE SAME THING IT TAKES THE CAA TO DO WITH SO MANY EMPLOYEES AND THOUSANDS AND THOUSANDS OF DOLLARS-- not to mention the wasted millions from the government (CDC, etc.)-- plus the NCF came up with the correct research and conclusions. I have had the privilege to be on the side lines observing the work the NCF medical committee, Gail Kansky, and Al Cocchetto are accomplishing. We need to thank our lucky stars we have these folks behind us and we need to band together as with our numbers is power. If you have the same disease I have -- the only thing you wish for is a treatment and/or cure. Those things dont fall into your lap -- we have to work as a well oiled machine to achieve this feat.

    Now I have shared with you a bit of the reminiscing and history of CFIDS/ME. As my history teacher use to say "CLASS DISMISSED and I hope I have made a difference in your lives today!" (And to show you what a small world we live in, my favorite history teacher of over 50 years ago turned out to be Al Cocchetto's cousin.)
    Thank you Kristina Hopkins, for your well written article.

    The following was added by the editors at NCF:
    [Ed. Note: That same issue of The CFIDS Chronicle had many striking errors (Vol. 20, Issue 3). Just one was when they wrote about the first national advocacy organization, CACTUS (CFIDS Action Campaign for the United States) and said it was begun by two San Francisco leaders along with others "including the CFIDS Association of America and Mass. CFIDS." It was begun, in fact, by a patient, Joan Iten Sutherland, whom they stated "was hired" while they claim "Thomas Sheridan was engaged." Joan was not "hired" but was a patient who helped form this first group that began the day to lobby and the CAA had nothing to do with it except to hasten the quick demise of CACTUS and hire away Tom Sheridan as their lobbyist although the president, Marc Iverson, did suggest the name. Mass. CFIDS had nothing to do with CACTUS. The first national group, although they fail to recognize it in their historical recollections, was a Portland, OR group that the CAA also helped with its demise. This Portland group was the first group to have the disease mentioned in a national magazine. The first issue of The National Forum (Vol. 1, No. 1, 1997) stated that many of their goals were taken from CACTUS. It seems that most on the staff of the CAA need to read (or reread?) Osler's Web!]
     
  9. Roy S

    Roy S former DC ME/CFS lobbyist

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    It's been a year today since I started this thread. That website with my whole article now needs to be joined for access, so I am going to put the article next in this thread for anyone who might want to read it.

    I was pleased yesterday to see the Worldwide ME/CFS Patient Alliance website and forum go online to work on effective advocacy. One of the goals is to get Congress to do hearings. Others have also brought up the subject. When the government seriously screws up like they have for so long with CFS, hard-hitting congressional hearings are warranted, among other things.

    I think it's outrageous that a year after the WPI Science paper was published (and the research before that) there is still no earmarked or designated funds at the NIH for the intramural retrovirus research. The extramural grants so far are piddling. Trust bureaucracies to move slowly if at all. Even the threat of having to answer the tough questions in front of Congress in public should speed things up. It also might get us some publicity and respect. Sometimes patience is a virtue, but not now.

    I hope more people get involved in advocacy and stay with it. It's one thing that we have to do because if we don't probably nobody else will.



    I stopped posting on this thread because of what Cort wrote. All the responses were positive on the other websites where I posted it.

    Cort, after I had this article done I initiated a series of long e-mails with you. I wrote those in good faith. I wouldn't bring it up if it wasn't important but it is. You wrote about my article "I really don't have a problem with that. I thinks its well considered." That was after I described your problematic online behaviors towards other patients that I thought you should change; many of the same ones others have brought up since then. I also brought up the fact that some patients are dangerously suicidal, and that I was fighting nasty depression at the time. I wrote you:

    "I started writing a long article on advocacy months ago. It contains constructive criticism of the CAA, and I have found it extremely difficult to write. Some of it I hate to have to write. At present I have no doubt that you will criticize me for it as badly as you have ever done anybody; maybe worse. Sometimes you seem to revel in that kind of online behavior. I can't believe I've actually considered not posting it because your criticism will make my current depression so much worse. I've been through enough in 39 years of this damned disease. "

    And it did make it worse, Cort, especially because you also wrote me "I promise that if you post something about the CAA and I think its incorrect I will post in a measured manner! if you like you can see the post before I post it to the forums - so we don't get into the public bash!"

    Since you brought up John Herd, he wrote in a blog
    "As encouraging as our building momentum was, it was very discouraging to see that some advocates, and activists and patients were turning advocacy and activism into a blood sport. There were some of us very committed to working cooperatively with other organizations and individuals. There were others who as one person recently described to me seemed bent on "eating their young." Such people seemed hungry to build the highest podium of prominence they could for themselves, in part by attacking others in the arena."

    I'm not going to respond to the pile of other statements you made and your relentless CAA promotion. However, your accusation that I was being misleading was wrong. As I wrote you, "My statement about the CAA controlling advocacy is true due to the way Washington works, and it's hard to explain. Basically, other groups efforts can be negated. It's one of the unpleasant aspects of politics."

    Cort, I warned you about alienating people, burning them out, and fracturing the online community. In my opinion you have done that to a substantial extent in the past year.

    I've always thought patients are interested in advocacy. I think your assertions that they aren't have been shown to be wrong. I could have spent the last year discussing and educating people on Washington lobbying and advocacy, but I knew it would be difficult or impossible here on your website.

    I have been glad to see other websites and blogs started. My favorite forum is http://www.mecfsforums.com which has been growing steadily to over 300 members now. I'll probably be there and elsewhere; especially if I get abused or banned here.
     
  10. Roy S

    Roy S former DC ME/CFS lobbyist

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    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.

    ************************************************** ***********
    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.

    ************************************************** ***********
    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.


    ************************************************** ***********
    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.

    ************************************************** ***********
    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.
     
  11. Roy S

    Roy S former DC ME/CFS lobbyist

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    5) Burnout

    Kim was hired about the same time I moved to Washington in 1991, and I had been telling her about what I was doing because she had a need to know. After I moved back to Illinois she wrote in the CFIDS Chronicle that the CAA had taken over DC advocacy because they were "troubled by the void of leadership involved in Washington advocacy" and later "Just three years ago there was no person or group taking responsibility for national CFIDS advocacy". Those statements really got to me, but I was determined to continue anyway.

    I later got a letter from Kim asking me if I wanted to be on the Board of Directors of the CFIDS Association. I sent a fax back right away and said I would like to and wanted to do more. Ted Van Zelst had gotten a similar letter and sent me a copy of his reply to them saying that he wanted to be on the Board of Directors also. I didn't get any answer to my fax. Months later a new CFIDS Chronicle arrived with new board members listed. Neither Ted nor I were on the large new board, but at least one person with no real experience was. Marc had dubbed Ted "The Father of CFS Advocacy", but even he hadn't been put on the board. All the experienced Washington advocates had been pushed aside.

    That was the last straw for me, and I dropped out then. I wanted advocacy to succeed and didn't want to harm the cause, so I didn't do anything. Maybe I should have, but I didn't think it would do any good. I have wondered how many did the same over the years. I have been bitterly disappointed with the failures in advocacy since then. I've had people tell me I'm the most laid-back and tolerant person they know, but I have my limits. I was once a very enthusiastic supporter of the CFIDS Association, but just couldn't tolerate any more. It may sound melodramatic, but I had decided to become deeply involved in advocacy even if it killed me. ME/CFS made my life very difficult; advocacy wrecked it, and it's never recovered. Since then I've gone through periods of not following advocacy closely and just trying to forget about it. Writing this makes me feel the same again. I guess it's sort of an advocacy PTSD. I'd like to think I missed something, but far more I wish advocacy hadn't failed so badly.

    There was an attempt to get an oversight hearing on the Senate H.E.L.P committee in 1999, but it apparently failed due to lack of adequate preparation, strategy, and timing. .

    I'm certainly not the only one that has been alienated. In 1991 there were 23,000 members. Today there are reportedly a few thousand. My clear understanding was that no one hired as an Executive Director would ever have a vote on the Board of Directors, and that policy would be made by a board consisting mostly of patients. Kim is now President and CEO, is on the 10 member board and has a vote. Marc resigned in 2001 and has a letter posted on Co-Cure which among other things describes how much control Kim really has. http://tinyurl.com/ldt4lv The next chairman of the board also resigned along with 3 other board members. http://tinyurl.com/nfvdbq

    Although I thoroughly dislike writing about this subject, in all good conscience I have to say I think it's time for Kim to step aside. I liked her when she started. I think she was doing her best, and she put in long hours; so much so that I was worried about her burning out and the effect it would have on the whole CFS movement. I talked to her about that, and so did Marc. However, it was clear to me that she didn't have the necessary leadership skills for the job, and I thought she would be replaced eventually. It's a difficult job, and administrative skills are not enough for that position. Progressive and dynamic leadership is essential for building a successful organization. Alienating so many people is not leadership.

    After 18 years, it should be clear that it is time for someone new. Far too many have been unnecessarily alienated, and the ME/CFS movement has been severely impaired because of that. Some people have spoken out for a change, I'm sure that other knowledgeable people don't speak out about it. I think it's time for that reticence to change. Countless people are living with miserable symptoms and are subjected to prejudice and abuse. Many have died. Some are on this little known list: http://www.ncf-net.org/memorial.htm. I know of 5 others not on the list that chose to end their lives. Loyalty to Kim compared to how much better someone new could do has to be considered. I would like Kim to tender her resignation and volunteer as an adviser.


    If a thorough search for a new head of the CAA was done, I'm sure that someone could be chosen that could re-energize advocacy and the other goals of the organization. Someone with an M.D. or a Ph.D. would have instant credibility. Problematic government officials would have to face someone new when they try to get away with business as usual. However, it is not my decision to make and I don't want it to be focused on and become too much of a distraction from the paramount goals of advancing advocacy. It's up to Kim and the Board of Directors. If she thinks that no one can replace her, she can recuse herself and the other members of the board can vote in a secret ballot.

    http://www.cfids.org/about/board-of-directors.asp
    The members could be contacted individually.

    ************************************************** ***********
    6) The Uncertain Future of Advocacy

    Effective advocacy for ME/CFS is essential. There has always been the hope and assumption that good science will change everything. I agree that it eventually will, but it won't be that easy. Prejudices don't just disappear, and the dignity and respect that the patients, caregivers, doctors, researchers, and advocates deserve won't come easily or quickly.

    Some recent changes at the CAA look good. However, a characteristic of a poorly functioning organization is making changes only in response to crises, then if the crisis passes going back to business as usual. Many critical problems continue. The lack of adequate grassroots development to cultivate new congressional supporters is very discouraging. It's absolutely essential.

    For example, Rep. David Obey's (WI) aide for the Labor/HHS Appropriations Subcommittee was one of the good ones I worked with. Her predecessor was reading a previous years report language from the bill and realized that what she had recently gotten was CFS. In one of the more sardonic CFS tragedies, she later killed herself. Dave Obey is now chairman of the subcommittee and also chairman of the full appropriations committee. He is one of the most powerful people in government now. Wisconsin has a very good support group that should be worked with to get his support in Congress.

    The fact is that the CFIDS Association now controls advocacy in Washington. It's just the way the system works. Even if they have competition, there is a need for speaking as one with the same message on Capitol Hill. Lyme disease advocacy has been crippled for years because their groups haven't worked together, although recently it appears that may be changing. The National Organizations Responding to AIDS (NORA) coalition formed that was able to get groups to resolve their sometimes bitter differences and effectively speak as one on policy on Capitol Hill. Maybe something like that will have to happen with ME/CFS, if that is ever possible.
     
  12. BEG

    BEG Senior Member

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    Roy, I believe you are doing just that right now. Let's move on to more constructive things, please.
     
  13. Roy S

    Roy S former DC ME/CFS lobbyist

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    Brown eyed girl,

    Have you read the whole thread, or even what I posted yesterday? I put a lot of effort into this and I believe it is constructive in the largest sense possible, based on my experiences and knowledge. The WPI, PANDORA, the Worldwide ME/CFS Patient Alliance and others want congressional hearings.

    What most people probably don't realize is that if the House of Representatives goes back to the Republicans, getting a hearing in that committee may become impossible. The effects of slamming patients can be very bad.

    BTW, that's the same committee (Energy and Commerce) that had the British Petroleum CEO testify about the Gulf oil spill. The day before the hearing he agreed to set aside $20,000,000,000.00 for damages. Hearings can get attention and action.

    I'm sorry that this disease makes some people extremely sensitive, but trying to avoid all difficult issues has contributed tremendously to our disease not getting the attention it deserves over a period of decades. That is still happening.

    I have to say I don't like censorship or suppression, even when it's phrased politely.
     
  14. caledonia

    caledonia

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    In my opinion, the CAA is stuck in the past both philosophically and technologically, and is making itself obsolete as the patients have moved on to wanting more aggressive advocacy, and having a more democratic patient-centered organization.

    Other organizations are taking the lead in making things happen. Maybe they will be able to get the CAA to join in somewhere further down the line.

    In general, as long as the CAA is not actively harmful, I don't think we have to worry about them one way or the other.
     
  15. Roy S

    Roy S former DC ME/CFS lobbyist

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    Kim McCleary's CAA is the representative for all of us in Washington and I'm increasingly uncomfortable about that. That's been the case for nearly 20 years and we still don't get respect for this disease. I think we've actually lost ground; I've gotten worse treatment from doctors the last few years.

    When the NIH wanted to put out that line about the Lo/Alter paper publishing delay apparently they just contacted the CAA. With the world experts and others in Washington for the XMRV conference, Kim went up on the hill after the conference alone. I'm concerned about what she is saying there. Similar things happened before. Where are the collaborative efforts that yield results?

    Many exceptionally qualified people will be in DC again for the CFSAC meeting. Will Kim work with anyone for lobbying for what we desperately need? Does anyone want to work with Kim?? How about an effort to meet with the editorial board of the Washington Post to get some coverage. The ad paid for by patients is good (hopefully great in its effects), but I think other efforts should be made. Kim just seems to be going through the motions that haven't worked.

    I just read Khaly's newest blog. It's relevant to this discussion.

    Be Vewy Vewy Quiet, I'm Hunting Wabbits
    http://www.cfsuntied.com/blog2/
     
  16. Dr. Yes

    Dr. Yes Shame on You

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    I don't agree at all, BEG. I think Roy is trying to do something very constructive, and whether or not personal differences are aired should not distract us from the larger goal of demanding action from the government that has been long delayed. Crucial to that is an understanding of the political history that we all share, and Roy was a witness to and participant in that history, and has been fighting in the trenches for both you and me for a very long time. We need to hear what he has to say, whether some bits go down comfortably or not, because we cannot afford not to.

    Roy, stop worrying about getting banned! Nobody in their right mind, or with the best interests of their fellow ME/CFS patients at heart, would do that to a resource and advocate like you. Thanks for your posts.
     
  17. BEG

    BEG Senior Member

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    Roy, If I could have you do a rewrite, I would suggest that you not lead your story with inflammatory language. Sometimes that turns people off, and they miss your message. That is why I only skimmed your posts yesterday.

    This morning I read your entire post. IMO, it's a very nicely written summation and history of the beginning of advocacy for CFS from your perspective. For posterity's sake it deserves to be written and read.

    We know very little about each other here on the forum. I'll just say a few words about me. First of all, I have a trivial, youngish sounding user name. Bad mistake. :(

    I've subscribed to the NCF's National Forum and the CAA's quarterly publication for as long as I can remember. I read them cover to cover, too. However, I've recently dropped them. The Forum spends too much space complaining, and I didn't like the new paper edition, "Solve CFS" published by the CAA, preferring the electronic CFIDS Link instead.

    I've also read every one of John Herd's blogs. Like you, everyone in the trenches that long deserves to be heard.

    I've donated to the WPI and the ME/CFS Patient Alliance. Probably PANDORA, too, in the past. I am a product of the 60's and extremely liberal. I've walked a picket line, and although I am no Norma Rae, I am not afraid to ACT OUT. I still haven't sewn my sock yet, though. Sorry Creekfeet.

    I prefer to read opposing views as well as those I agree with and keep a broad, open-mind and especially make up my own mind.

    Congressional hearings are long over-due, IMO.

    It seems we may be more similar than not, Roy. Keep on writing.

    BEG
     
  18. caledonia

    caledonia

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    Just sort of thinking out loud here.

    So would the NIH sending a press release only to the CAA be a problem with the CAA, or the NIH?

    It seems like a better method would be for the NIH to have a CFS news page where they publish the latest info, and the patient orgs/forums could subscribe, pick it up from there, and distribute it.

    Khaly seems to think it would be better to start a new advocacy organization. You seem to be leaning towards revamping the CAA.

    The question is, which course is better or easier? Maybe both should be done? If you attempted a coup d'etat of the CAA and it failed, would they be any more inclined to work with other advocacy organizations?

    What sort of control do we have over the CAA other than petitioning board members to change the leadership? Would a patient boycott of the CAA be effective?
     
  19. Roy S

    Roy S former DC ME/CFS lobbyist

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    Illinois, USA
    Brown eyed girl, I like your name because of the song. I agree that inflammatory language can turn some people off but I also think that sometimes expressing well justified anger is necessary.

    Dr. Yes, thanks. I have watched your jousting with Cort on this board and I've seen your posting here decline dramatically. Fortunately you're on the other one with your sense of humor intact. A while back you wrote that researching and posting here was bad for your health and requested to be shot if you continued. Consider yourself shot. However, I appreciated this one because I was going to check the facts before you wrote that. http://www.forums.aboutmecfs.org/sh...-weighs-in-on-XMRV-debate&p=127583#post127583

    caledonia, I think the NIH should have just put it out as a normal press release.


    As I previously wrote, I still think the CAA should do a nationwide search for a new CEO and get the best possible person. Other much more successful organizations change leadership. After 20 years I think it would be obvious that Kim just doesn't have what it takes. We still don't even get respect that we deserve. I don't think Kim should be a voting member of the board or a non-voting member of their nominating committee, but it's obviously up to them.

    They got some rather weak language in the Senate appropriations report for FY 2011 but apparently there's nothing going on on the House side. Before the CAA we get both. Kim has also refused to do essential grassroots organization. One of their excuses that I don't buy is that it would cost a lot of of money. It's not surprising things aren't working well the way she has been doing lobbying.

    After watching the CAA for the past year I now believe that there should be a coalition (as I mentioned at the of that article). But I doubt that Kim will really share power. I'd much rather have Annette Whittemore and Marly Silverman speaking for me. I get no sense of urgency from Kim.
     
  20. Roy S

    Roy S former DC ME/CFS lobbyist

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    Illinois, USA
    Peggy Munson has a new blog and she brings up some lessons learned from AIDS activism. I spent a lot of time studying AIDS activism and how it could be adapted for CFS activism. She writes about what happened at a congressional hearing with Tony Fauci. She also writes about bullies, Cort.
    http://peggymunson.blogspot.com/2010/10/best-offense-is-good-offense-what-we.html
    "Now AIDS has given us a road map for activism, and it has even given us Anthony Fauci http://blogs.wsj.com/health/2010/09/08/world-class-virus-hunter-to-head-up-the-latest-xmrv-study/, who Russo critiqued in his aforementioned speech by saying: And we read on the front page of The New York Times last Saturday that Anthony Fauci now says that all sorts of promising drugs for treatment haven't even been tested in the last two years because he can't afford to hire the people to test them. We're supposed to be grateful that this story has appeared in the newspaper after two years. Nobody wonders why some reporter didn't dig up that story and print it 18 months ago, before Fauci got dragged before a Congressional hearing .
     

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