Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Article: Not One Alone: CFIDS Association Board of Directors Take a Stand For the Power Of 'We'

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Dec 2, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team Senior Member

  2. Sean

    Sean Senior Member

    Same problem here. Also for another article on the forum today.
  3. urbantravels

    urbantravels disjecta membra

    Los Angeles, CA
    Upgrades are hell.
  4. jspotila

    jspotila Senior Member

    Not One Alone

    I can't see Cort's article either, but I can at least post the text of the Board's statement:

    This statement appears in the most recent issue of SolveCFS, the print publication of the Association.
  5. Roy S

    Roy S former DC ME/CFS lobbyist

    Illinois, USA
    Heavy on the typical CAA style. Substance? Not so much.

    This is all happening because of the WPI. Their progress for all of us is being seriously held back due to lack of funds. They are ahead of everybody else in many areas and we are losing more and more time because of the lack of funding. That's the real issue for me. We are running on a largely sequential process the way things are going now and it could be substantially faster. How much time have we lost already?

    How many millions of dollars is the CAA sitting on right now that will eventually go to research, maybe sometime next year or the next? The process could be a lot faster. I know what your process is now. It was more expedient in the past and could be again. One of the advantages that small organizations like the CAA should have is the ability to quickly change and adapt. I don't see it at all.

    Jennie, I appreciate any beneficial things that you and the other volunteer board members have done, but I remain deeply dissatisfied. The CAA has become far too much like a slow, entrenched governmental bureaucracy after 20 years of Kim McCleary. I think the patient community is going to become increasingly dissatisfied with the slow pace of progress.

    I will state again that I think a nationwide search should be done to find the best possible person to lead the CAA. It's been 20 years. Basic business management teaches that if an organization fails in its mission over an extended period of time the CEO should be replaced. Trust is a fragile thing in this community. When someone loses it, it doesn't come back. Someone new could pull everybody together far more than I think is possible now.

    BTW, I asked if the CAA would support the name change to ME/CFS sometime ago. Any response?
  6. jspotila

    jspotila Senior Member

    The Board is actively considering the name change question. I expect a public statement soon.
  7. Marty

    Marty Senior Member

    Time to Change

    Having returned to the cause after 20 years, I was shocked to see no improvement. In fact, the CDC is fighting us harder than ever with psychobabble publications and no biomedical programs or leader.

    I think the CAA's view that things are bright and rosey is a sales campaign and clearly not evidence-based. There is excitement at the moment, yes, because of a possible risk to the nation's blood supply, not due to any turnaround in the opinion that we are lazy and crazy.

    Contrary to the CAA statement, I think that one good advocacy organization would make a huge difference. We could turn the world upside down if we had a good leader with paid staff. After the CAA brought in Kim, I stopped supporting them because I saw our money going to what I thought was ineffective government campaigns before we had good science. Now we have 20 years of proof that medical, and therefore public, support is not only still missing, but ME/CFS is still a joke. Magazines and TV and doctors and the public are still calling it "chronic fatigue". I wouldn't think of telling anyone I have this disease.

    I have to agree with Roy, but let me first say that I have always found Kim to be a very nice and capable person. In fact I agreed with her "cooperative" approach. I thought that our whole problem was information based. If we could just distribute information packages documenting the great science that we had even 20 years ago, the government and the people would be amazed and be educated. It was best to treat everyone respectfully and use our "inner voices" and little by little, being right would win. It didn't work for AIDS and it didn't work for ME/CFS.

    I'm older now, and the evidence says that I was wrong. It is not a problem of information; do you know how many hundreds of thousands of letters and information packages have been sent? And millions of patient-hours putting them together? Kim said that she has sat at every ME/CFSAC meeting for 20 years, and what has been accomplished? I watched the last two ME/CFSAC meetings; I pulled my hair out and wanted to throw rocks at my TV screen. I heard the CDC rep, Beth, try to explain to the committee how ME/CFS has psychological underpinnings. For heavens sake, WE HAVE GOTTEN NOWHERE. The smart thing to do is to change tactics, CAA.

    Kim has been consistent but she failed in one thing; she failed to measure her results. This pollyanna board statement is riding on the coat tails of the privately funded virus discovery. If the virus doesn't prove to be a cause, we are right back where we started. We had a virus discovery in 1991, even pictures of it, but the CDC stifled that one, too.

    Patients, don't count on this virus hoopla. Forget writing all the long letters that have cost patients their strength. We must get confrontational - yes, that awful word. Forget the wishful and positive thinking and dare to get MAD. This is WAR, dammit. Don't shoot bullets (letters) off into the air; measure if they are effective. Count the dead!

    Sorry, Kim, but you must be replaced by an obnoxious, experienced activist that can actually produce change - hold the CDC responsible, secure the required funding from the NIH, inspire the patients to ACT UP, and convince the medical community and the public that this is, and always has been, a legitimate disease, regardless of the XMRV outcome.
  8. xrayspex

    xrayspex Senior Member

    I am ready for a rad change too and any money I have from here on out will go to WPI unless CAA starts supporting them more. If it wasn't for WPI there wouldnt be the tiny chance there now is of change for the better. Like Deckhoff Jones realized......its obvious it was a viral etiology all along.
  9. George

    George waitin' fer rabbits

    South Texas
    Can I send all my money to Joe Derisi? Cause without his virochip nobody woulda found nothin' and we'd still be sittin' in the dar,. (grins)

    (Don't bite! it was suppose to make you laugh.)
  10. Cort

    Cort Phoenix Rising Founder

    The question is how do you get good science? Science costs alot of money.... The govt campaigns were designed to get at federal dollars which is where much of the money for medical research is. They were trying to get good science by getting access to that money.

    Obviously they have failed but so have most of the other disorders in our camp. FM, IBS, Interstitial cytisus, pelvic inflammatory disorders - are another set of CFS-like, mostly female effected disorders - that are also at the bottom of the NIH's barrel. Actually when you combine the NIH and CDC budgets CFS has a higher per patient dollar output than FM (which does not have a CDC program).

    The point is that every organization with a disease like ours is having trouble and we are the most behind the eight ball of all of them because unlike IC or FM which do fit into an Institute and should be able to receive that Institute's backing we don't fit anywhere and have been shoved into the powerless and money-poor ORWH. So we're automatically starting off with one hand tied behind our back.

    The question is whether if the CAA had chosen a more aggressive stance would they have received more support from the patients and whether that would have paid off in increased advocacy, more pressure on our lawmakers and more funding? I think it certainly would have helped.....but would things be dramatically different? Nobody knows. I would love to try...

    I must say though that I'm a bit haunted by the 57 patients who participated in the 2000 Lobby Day. This was just after the GAO report about the CDC scandal came out....patient interest was surely very high...yet we only had 57 people show up to lobby Congress. If the CAA had said hit the streets would we have followed? I'm sure some of us would've...

    George is completely right - XMRV has done what years of advocacy could never do - which is interest the research community, or at least parts of it, in CFS.
  11. CBS

    CBS Senior Member


    These diseases are most like ours in terms of the poor funding and lack of attention that they have received. For me, that's where the comparison ends. Patients, CFS doctors and advocates habitually underestimate the potential severity of ME/CFS and in doing so look right past the pathological processes as they are progressing. The real danger of ME/CFS is the insidious nature. By the time you realize just how severe things can become, you're already cooked. By that point, you're not attending rallies, you're lucky to be leaving the house for groceries.
  12. lancelot

    lancelot Senior Member

    southern california
    Yes by the time we realize something is wrong and we goto the doctor, we are completely disabled by CFS/ME within days or weeks of onset. The insidious onset of CFS/ME is very different than MS, Parkinson's, HIV+, diabetes, etc whereby these severe/life threatening diseases may take years or decades before disabling the patient.
  13. Cort

    Cort Phoenix Rising Founder

    I don't really know about how severe IBS or Interstitial Cytisus gets - my guess is that they don't reach the depths of CFS - at least I hope they don't. Insidiousness is a terrible factor for a disease, for sure, since its presence indicates a lack of awareness of just how bad things have gotten. We may indeed win the prize on insidiousness - I am in the throes right now of a PEM attack brought on by my seeming successful walk yesterday......:D

    Even my mild kind of insidiousness - which has happened many times before and which I know I will recover from - points out how difficult it is for people with ME/CFS to physically participate in something....determining when one is crossing the line is hard to tell.
  14. Cort

    Cort Phoenix Rising Founder

    I agree that results are ultimate arbiter. If you look at the CFIDS Association they have been effective at getting media attention, at getting physiciana aware about CFS and in the research area where, with a little money, they have made real progress.

    The one big hole is in federal funding for research - which has declined over time. Getting increased funding was a chief goal and it has not worked out. It has not worked out for CFS or, as I noted, for other diseases with similarity to ours. Would another approach been more effective? Who knows. All we know is that what has been done in past has not worked and it is incumbent on everybody, patients and organizations alike, to keep open to new possibilities and to examine what is working and what is not working and to discard what is not working.
  15. Marty

    Marty Senior Member

    The question is how do you get good science? Sorry to disagree, Cort, but that wasn't the point at all. We are talking about how CAA could change to better serve our cause. Perhaps people should learn about when the CAA changed direction and consider whether those issues are pertinent today. I think they would be surprised. The following link is a statement from Marc Iverson, the founder of the CFIDS Association, and I encourage people to consider each point: . I think these are the things we should be talking about.

    I agree with Marc that the biggest mistake that the CAA (patient's organization) and the IACFS (doctor's organization) made was agreeing to the silly "CFS" name. Funding is not the problem; credibility is the problem. You can't laugh at a name and award it millions of dollars at the same time.

    As I saw it, the CAA used to be wildly popular in the late 1980's and the very early 1990's; people devoured their CFIDS Chronicle for the latest - and only source of - science and treatment. Then the Association's policy changed with Kim's arrival; the Chronicle became more touchy feely and no longer a document that patients could give to their doctors. The Association began picking fights with patients who didn't go through their office (Osler's Web, May 12th Day, and several other spats). Even Tom Sheridan, their lobbyist, told them that they had to pull together their scientific validation before they could expect legislators to take up their cause. This is just my observation at the time, but I'm positive that there is a large population of ex-CAA supporters who agree.

    Would things be better if CAA had been more aggressive for 20 years? Absolutely! I ask you, did the AIDS movement, the women's movement, the civil rights movement, and any movement get anywhere without being demanding and disruptive? Or the opposite, has CAA's cooperation resulted in any useful action from the CDC? Quite the opposite, I think you will agree; the CDC is currently publishing papers calling us lazy and crazy and denying - in advance - that the virus exists.

    Why don't people show up to lobby Congress? Because we've been doing that for over 20 years, at huge physical expense, and have gotten nowhere. Smart people don't keep doing the same thing and expecting a different result. Hundreds of thousands of letters have been sent to the government, each one taking perhaps days or weeks of patient effort to try to construct a good letter out of the fog. Where have they gotten us? The movement has failed to gain us respect and validity. Conditions are the same - or worse, thanks to Wessely - than they were 20 years ago. The same words in the letters, the same words in the patient's testimonies, the same words in the ME/CFSAC meetings for 20 years, going round and round, with players burning out and just being replaced with new faces. Our doctor's are still begging instead of presenting constructive proposals and demanding funding.

    If we don't change, and change radically, we are in for another 20 years, with or without the virus. The movement is in shambles with only a few doing focused things; it is only the virus that is causing excitement. That excitement will soon be old news, and there is a real question of proving causality, and that could take many years. It is the advocacy that can sustain the movement and obtain us respect, validation, and - ahhhh - treatment. But you know, just respect would be really nice.

    The patients had great ACT NOW signs at the last ME/CFSAC meeting, asking the government to act now. I'm asking the patients to act now. These boards show they are incredibly smart and creative. And wouldn't it be so great if we had a national, paid advocacy organization to lead us?
  16. Cort

    Cort Phoenix Rising Founder

    I don't disagree that we would be better off if we had acted more aggressively. I simply question how aggressive we are willing to be. AIDS and Civil Rights movements were a piece of cake compared to CFS; both groups already lived in communities - they were right next to each other; they already had strong social ties through churches and other organizations - they were already physical communities. We're not - we are isolated; except for the internet - completely isolated really.

    I wasn't there for the early history and I feel like if people like Tom Hennessey had managed to stay well things would have been different. ( I do agree the old Chronicle was just horrible!! but it improved greatly and after a while it was no longer the old Chronicle. However I felt it didn't attempt to give readers a real understanding of the key advocacy issues of the day - a big mistake. We were not involved in those issues - a real mistake....)

    On the other hand the CAA paid a good chunk of money to a lobbying group - the Sheridan Group - which has managed to maintain itself and grow in a competitive environment over the past few decades. They know what they are doing obviously. I agree that we need more aggressive advocacy -I've been saying that for years but I don't think its a simple or easy situation.

    Where we differ on the name change is that you think we could have changed it and I think it would have been a fools errand to keep trying. Once our federal advisory committee voted unanimously to drop it - what would be the point in putting more resources in that? If even our chosen federal advocates said would not support what was the chance that the CDC, which had no interest whatsoever would? It was over....too bad - it was too bad....

    I also think that if we got 500 people to Lobby Day we could really get something done. Or if we actually packed that little CFSAC room every time we could make more movement. If you can figure out any way to do that I'm all for it.
  17. Cort

    Cort Phoenix Rising Founder

    When you say the movement I would say 'what movement'? On the federal level there is the CAA and ????? That's it! No movement! ....(Now I grant you there is movement...There's alot of interest and alot of movement - that's great! ) I think they could have done more to build one and I agree that looking back Marc Iverson's ideas look enticing...

    Something happened in the US that didn't happen in the UK I don't think. In San Diego where I used to live there were several large CFS support groups. The Tribune did several large full page stories on CFS!. CFS was in the news.. Tom Hennessey was on national TV.....Now there's nothing in San Diego..maybe 1 really small group of people....that meets irregularly...A couple of million people. The same thing has happened across the country.....The groups in Wisconsin are all almost gone. Is there a viable support group in New York city? In Los Angeles....

    Something happened that went far beyond whatever the CAA did or didn't do...the CAA didn't build those groups and they didn't tear them down...something happened.....maybe it was the birth of the internet...maybe it was just too much given things were moving so slowly on the research end....the Science really dogged down for awhile....I think people lost hope - they didn't see opportunities - now XMRV has awoken alot of hope - and look what's happened, groups springing up all over the place.......
  18. Mark

    Mark Former CEO

    Sofa, UK
    I can't comment on the history, nor based on the details of the individals involved, but just make some general comments, based on a year of hearing arguments go round and round.

    Blame, and anger, should be focused primarily where it belongs: at the CDC, FDA, NIH, for failing to fund genuine research, and much less at the CAA for failing to make them do so. Nobody has succeeded in making them fund us, neither in the UK nor in the US - and many approaches have been tried.

    Yes, all movements have needed to get angry, aggressive, in-your-face, to achieve change. And all of those movements have had moderate wings and "inside voices" as well. Even now, who can say whether South African apartheid was broken by sports boycotts or by ANC violence? Big movements are needed, but not necessarily only one big movement.

    The CAA's article said "not one organisation alone..." and that's right. I read this as saying we need more organisations than just the CAA. The CAA is a non-profit, and there are things that non-profts can't do.

    Outside the CAA, we have so many groups, so many campaigns, but they are fragmented, diffuse, competing with each other for attention. I find myself wondering why all the voices of long-time opposition to the CAA haven't formed a rival coalition by now, and united behind the different approach I hear so many people calling for. Maybe that's the answer?

    There is a fundamental issue of principle here, which applies to all unexplained, disbelieved diseases: we should not have to have scientific proof of exactly what the disease is in order to get research into the disease: it's the ultimate Catch-22. Disbelief and disrespect are the problem here, and we have to demand respect.

    Lyme, FM, MCS, and so many more...these are all linked in somewhere, with ME/CFS at or close to the heart of it all...and yet we are fragmented in that sense too. Getting together and fighting back can and should include all those people too. Maybe if we look outside our world rather than looking inward, we will find the answers there.

    Every attempt I've seen at getting angry has only succeeded in alienating more moderate support from within our own ranks. This hasn't been because people don't want to Act Up, it's been because the way that's been done has been focused wrongly. Far too much talk about cover-ups, official secrets, and conspiracies. Far too much contentious text about the science and about psychs - stuff that only a subset of us can agree with. Instead we need to Act Up over a platform that everyone is agreed on. Everyone is agreed that we need recognition and proper funding for research. Extremists need to 'get it' that the movement is not going to all unite behind a statement that there's been a massive government cover-up and we need to storm the psychs' buildings. We can't build big movements by talking about details on which not all are agreed. We need a strong, simple message to all get behind.

    If we are to Act Up and be successful, then we need to command public support. So we need to ask ourselves what those of our friends and family do agree with, those who support us at all. They accept that we are genuinely sick, they accept there should be more true medical research. The rest of it...they are not quite so sure. If we want widespread public support, then we need to focus on a core message.

    WPI and XMRV has changed the game, but even if it works out and the X+ now get funding, the moral argument will still have been lost. We shouldn't need WPI and XMRV in order to get research. We should be entitled to research in the first place. We should be entitled to respect. Those whose illnesses are unexplained and disbelieved who come after us should also be entitled to research. We should fight for that wider principle; we should fight for that basic respect.

    The CAA seems to be saying we need each other: we need many voices speaking as one. We need a diverse set of perspectives, but we need to all stand together as well. That's a call for us not to fight each other. But this statement doesn't speak of a platform we can unite behind, and it prompts no specific action: if this is a call for us to unite, then it is not saying what or who we should unite behind, nor does it say what what we should unite and do. If the idea is to unite and sign up to the CAA - which I don't think it is - that means nothing. It's clear on this thread, if it weren't already obvious, that in order for everyone to back the CAA, the CAA would need to change. Change the leader, change the policy, change the strategy - those who've left won't return without that. But we don't all have to back or join the CAA - what we do need to do is act together. The question is: what will we all do? And that needs to be something we keep doing, and keep doing, and something which can't be ignored.

    We want true recognition of our physical illness: we demand respect, and real funding for real research. Everyone agrees about that. But if we're all going to get together, then we need to all get together behind doing something: so my question is: Unite and do what?
  19. Cort

    Cort Phoenix Rising Founder

    Thar's the question!

    DO WHAT????

  20. aruschima

    aruschima I know nothing

    Do what and how ????

    In the moment I feel we are ALL looking like long time married couples ; we argue back and forth who is right, who is wrong, what and how it should be done, or could have been done, what was not done, what needs to be done, which is the right way, or the wrong way, which fault is what or whos - we try to change and force on each other point of view and the way we think and act..

    Everyone, who has been in a long term relation ship, knows that this will never work !
    You will destroy each other in the process !

    You do not have to support my radical ways, you do not have to support moderate views, or one persons point of views, but let each other ACT UP or SPEAK UP in which ever way each of us choose to; do not stab each other in the back for doing so.

    This is MY meaning of UNITED.

    (ADD ON PERSONAL VIEW: Criticize and discuss organizations like the CAA or CFSAC for not doing their job, withdraw your support, LAMENT ALL YOU WANT, but there comes a point, where I like to move on. Otherwise you destroy yourself, or the cause in the process. In OUR CASE- we do not have the luxury of wasting our energy in playing endless blame games)

    And now I will add some very personal view points and support Marthy for her comments, because I think there is lessons to be learned from advocates who have been around for such a long time and have seen it all.

    Personally I do not agree with we need puplic support. At least not in the sense that everything we do, or how we do it, has to be agreed on by the public or each other.

    Mark, you made some good points, however, Nelson Mandela did not have public support in the beginning of the apartheid movement. The opposite, he was widely criticized for his radical views; imprisoned by those who wanted to protect their interest. It was his personal strength and strong believe in a just cause (and history) which proved him right and gave him the wide public support he has now.

    Most people who initiated great change were not supported widely, and often their actions were very unpopular.
    The AIDS campaigners, and sufferers, were stigmatized. AIDS was seen as a illness of homosexuals and therefore had not public support what so ever. Again, it was the strong sense for right and wrong of a few, the will to force a change despite the lack of public support, which made change happen.

    Sometimes CHANGE can only be forced by unpopular means, because the injustice done is covered up and protected by powerful people and organizations, who will protect their interest at all costs.

    And looking at the history of ME/CFS it certainly looks like there are an handful of powerful people and organizations who failed to do their job, covered up their mistakes, and protected their interest (what ever they are) at the cost of millions of very sick people.

    Human rights have been abused, yes, even children miss-treated, lives destroyed; - this is certainly enough reasons for me to act up as radical as I am capable of, without hurting any other human being physically.

    DO WHAT ..........AND HOW ? A good question.
    One thing is for sure, you will never get the whole ME/CFS community, world wide, to agree on how, but maybe we can agree on what for ..........

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