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Advocacy - Is it possible to have a real discussion about on the web?

Discussion in 'Action Alerts and Advocacy' started by CBS, Sep 29, 2010.

  1. CBS

    CBS Senior Member

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    Advocacy - Is it possible to have a real discussion about it on the web?

    For quite some time I have wanted to have a constructive conversation about ALL advocacy without it devolving into fruitless back and forth about how one group or another is evil (To put my bias out on the table, to me the evil group isn't the one that has made mistakes while trying; the evil group is the group that stood and criticized without ever trying to do anything constructive themselves).

    Here are my first thoughts to try and get something constructive started. Feel free to add to the list. Let's see if we can do this in a mature manner.

    • What is it that you'd like to see in an advocacy group?
    • Do we need more than one advocacy group?
    • Where do we expect the funding to come from for the one (or many) advocacy groups we want?
    • Who do we expect to actually do the work required for an advocacy group to gain credibility (shouting on the web doesn't count, that's venting/therapy, not advocating. I'm talking lobbying, patient education, physician education, etc.)?
    • Should we require that board members be patients or family members?
    • Are there mechanisms that could be put in place to keep the big egos that like to be in charge of everything from commandeering good intentions?
    • Is having more than one advocacy group useful in a stick versus carrot kind of way? If so, is that because this is a useful strategy for actually getting something done or is the utility in giving patients a choice of places where they may feel more comfortable?
    Lastly, I have no ambitions of directing such an effort. I am not well enough at the moment to handle my own daily self-care. I just thought (in a moment of utter cluelessness?) that this topic was important, that in the past it has always been hijacked by trolls attacking one group (with no real intent of doing anything constructive - my definition of a troll) and that we as a patient community deserved better than that.
  2. jace

    jace Off the fence

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    I've always found it surprising that in the US there is only the one big advocacy organisation for ME/CFS. In the UK we have AyME/AfME, IiME, MEAction, MEResearch um....there's more, I know there are. Just about every area, Anglia, Kent and Sussex, etc, has a smaller group. Is the CAA the only one with a big presence in the States? There's PANDORA, they are doing good work. Any others of any size?
  3. CBS

    CBS Senior Member

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    There is OFFER UTAH (http://www.offerutah.org/) started by Dr. Bateman. I don't know much about it but there is also the New Jersey Chronic Fatigue Association (http://njcfsa.org/)

    Is there an umbrella organization for these smaller "local" organizations? Would it be feasible and useful to coordinated the efforts of these state and regional organizations? Is that already being done and I just don't know about it?

    If there was an umbrella organization, what would we want it to accomplish? Keep in mind that there are strict Federal limits on amount of "lobbying" that an organization can engage in and still retain it's 501(c)3 status as a charitable organization (that's not to say that lobbying is not allowed, it's just constrained as a percentage of annual expenditures).
  4. Roy S

    Roy S former DC ME/CFS lobbyist

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    In my opinion the discussion of advocacy is of utmost importance but it can't happen on this forum. If and when the new advocacy forum is up and running that may be a great place for it. I hope so.
  5. CBS

    CBS Senior Member

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    Why not on this forum?
  6. BEG

    BEG Senior Member

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    Small, local support groups dot this country. I don't know of an umbrella org. either, CBS. I believe they are an untapped resource for advocacy in their cities (locally). Videos, sit-ins at blood banks, mall displays, letter writing, speaking with their reps in August when they are on break, etc. If we could only get a complete list with President's names and addresses and connect them to each other . . . Suggestions for an advocacy project could come from the National "Umbrella" Organization." Realizing these are groups of sick people, the advocacy projects would need to be simple and easy. But imagine hundreds of these groups doing the same thing simultaneously. That's harnessing a lot of power.
  7. CBS

    CBS Senior Member

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    Before getting too sick to be of much use, I co-founded a group that's purpose was to, educate and coordinate the activities of a number of community organizations. Groups that were less experienced (for example in interpreting City, State, and Federal code or had less knowledge of available resources) could draw on the experience of the more experienced groups and the more experienced groups gained status as they could claim the support of a broad cross section of communities and not be dismissed as the "politically active elite."

    The combination of education and a unified voice was quite powerful. This particular group has grown and gained a significant amount of influence in local and region matters. There are various stages of growth that an advocacy organization has to go through to gain credibility and the stability to survive. Some of the key elements for us were the establishment of guiding principles and a clear delineation of what roles the coordinating organization would assume.

    It was not unheard of for the various community organizations to hold opposing views on a specific topic. If the coordinating organization had taken a position of supporting the desires of one community over the desires of another that went beyond upholding the guiding principles, the group would have torn itself to pieces. We didn't allow that to happen and in the end everyone felt supported by the coordinating organization. That this particular group has retained all of its original communities and over the past few years drawn in many more is testimony to the utility of the model in that setting.
  8. kdeneris

    kdeneris

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    1) I would like to see an advocacy group -- probably very small, and not very formal, no applying for non-profit status -- seriously exploring how organized protest, possibly leading to demonstrations, mass letter writing campaigns, and organized acts of civil disobedience -- could benefit us.

    2) Yes, we need lobbying, patient education, and physician education can all be greatly enhanced by publicity. At this moment, just about any publicity is good publicity. Most of us probably think the publicity we're getting from the authorities has been consistently bad. Essentially, people with ME/CFS have been smeared by the false allegations of those who find a psychosomatic explanation convenient. I would like to suggest that we need to use the media to draw attention to our plight in various ways, and lobbying, filing for nonprofit status, writing a letter to your representatives, setting up a board of directors, engaging in fund-raising -- while all enormously important and helpful -- are not the only activities we should be pursuing at this time. Timing is crucial. The XMRV discovery provides an important window of opportunity for all forms of activism.

    3) An advocacy group does not really need "credibility" except with those for whom it advocates. Patients, in our case. Scientists need credibilty. Not only because of the ethos of Science and its method, but because they rely on government funding. The unfortunate result in Science can be timidity preventing progress, on the one hand, and, on the other, a tendency to act in the interests of the government (where the money is) instead of in the interests of finding objective, scientific truth. Any advocacy group for ME/CFS should not be too cozy with the government. No advocacy group should be relying on government funds to fund their efforts, because it would then be a temptation for them to start acting in the interests of the government, (where the money is) and not vigorously advocating for the patients.

    4) For all the reasons above, multiple advocacy groups are needed to keep everyone honest, and working as hard as possible. Competition is good for that.

    5) Having said that an advocacy group does not really need "credibility," except with those for whom it advocates, I agree that advocate organizations need to maintain credibility on the science to achieve our goals. What they do not have to do, and should not do, is confine themselves to politely begging the government to help us. Those methods have not worked for a very long time. Yes, we need to continue doing just that, but some other people need to be stomping on the government's toes and kicking its butt at the very same time.

    6) Credibility with those whom you disagree is one way to gain and maintain access. But it's not the only way. And because as a patient group we've never had any crediblity to begin with, that strategy is not working very well. I believe those efforts to gain credibility by reasoned argument and diplomacy could work better if augmented by people coming at the same problem, but from a totally different direction. We also want National Media coverage, don't we?

    7) Shouting on the web at people who are deliberately obstructing our efforts to gain scientific legitimacy, or are blocking funding for scientific research is a perfectly legitimate form of political expression. It's a lot more effective, and even more therapeutic, when hundreds or thousands of people decide to vent on the same topic at the same time. I would prefer to see lots of people with wheelchairs and supplementary oxygen taking over public buildiings, but given the condition most of us are in, I think we need to be more creative about our use of the web.

    8) I'm sorry you are so unwell, CBS. But let us not call fellow sufferers "trolls," or "evil," no matter how much disagreement currently exists.

    9) And let us not narrowly define advocacy in a way that excludes the American revolution, the abolition of slavery and successful civil rights struggles in the U.S., successful efforts for female suffrage, successful efforts to end the Vietnam war, and successful efforts to end British colonial rule in India, etc.
  9. CBS

    CBS Senior Member

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    kdeneris,

    Many good points. I agree that at times there is a real need to kick a few shins. As for my use of the "troll," I have sent you a PM on why I deliberately used that term.

    As for the term "evil," I'd love to see that term dropped by all parties and to that end, my apologies if my use of the term felt dismissive or inflammatory. I don't plan on using it again.

    Shane
  10. bakercape

    bakercape Senior Member

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    I think

    we need an advocacy group which does not accept money from the CDC or NIH. These 2 groups have done more to abuse and nelect us over the past 25 years than is possibly imaginable.

    There should be a clear line between the advocacy group and the govermnent so the group can be an independent watchdog.

    I'd like to see an advocacy group which is willing to get involved in individual injustices being done to children with CFS. LIke the boy in North Carolina who was stripped from his parents because he had CFS and not aloud any contact with his family, forced to exercise.

    I'd like an advocacy group which does everything it can to support the idea that MLV's are probably the cause of many cases of CFS.
  11. kdeneris

    kdeneris

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    Wouldn't it be great if we could set up a legal defense fund for ME/CFS patients, who suffer discrimination in trying to access to employment, medical care, housing, educational accommodations? If, when someone's civil rights were violated (as when sick children are taken from their families and forced to exercise), we could obtain redress in the courts?

    It is sometimes easier to achieve major victories in court, than it is to tame the executive branch of the U.S. government. Let the courts make the executive branch listen to us.

    I wonder how much it would cost to set up an ME/CFS legal defense fund? Probably a lot. Under civil rights legislation in the U.S., there are ways for attorneys to recover their fees, and for plaintiffs to recover triple damages. Lawsuits often generate a lot of publicity, which can only be helpful.

    I am sorry to say that If a lot of us are infected with HGRVs (or whatever we are going to call it,) our issues with discrimination have probably just begun.

    Another thought: this takes plenty of money. We need donors.
  12. Cort

    Cort Phoenix Rising Founder

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    The simple answer is NO. Except maybe for PANDORA the CFIDS Association is the only organization in the big USA that is attempting to influence things at the federal level. Its kind of amazing!
  13. Cort

    Cort Phoenix Rising Founder

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    I agree the potential is out there. There are supposedly at least 200,000 people who have been diagnosed with ME/CFS in the US.
  14. Mark

    Mark Acting CEO

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    It's bizarre and disturbing that we have so few organisations and that we are so fragmented. The fragmentation of both the patient population and the support organisations is the biggest drag of all on our interests IMO. Political infighting can be blamed, but that situation in turn can be blamed on the frustrations and divisions caused by the way we have been managed. The very name "ME/CFS" implies "divide and rule" to me: that line drawn right down the middle of us, splitting us apart from each other. We simply have to get together if we are going to get anywhere. Not necessarily one giant and compromised organisation, but two or three, maybe...some of the differences of opinion are just too stark to sit together.

    The early points about political campaigning by NGOs or "non-profits" ("registered charities" in the UK) are important in relation to advocacy. All charities and NGOs are compromised to some extent with respect to politics by the laws that govern them. I think that's part of the frustration of some with the CAA. Sometimes, what people ask of them is probably impossible or illegal for a non-profit organisation. I think people need to understand and accept that their role is what it is, and if there's a need for other approaches as well (and I think there is) then that gap has to be filled by others.

    I'll make four suggestions. First, our proposed huge new unified advocacy/campaigning organisation should not aim for non-profit status because that risks tying its hands, dictating its agenda, and causing further fragmentation and disagreement. Second, I'd like to see an international movement: bringing as much of an international dimension as possible could help defuse some of the controversies and divisions. Third: it makes sense to start from what you have already, and PANDORA does seem like the best or only candidate for building the sort of network I would have in mind. Fourth: personally my model would be Greenpeace: international, mixing campaigning with direct action, uncompromising and uncompromised, not a registered charity, and nevertheless commanding very broad support.
  15. kdeneris

    kdeneris

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    I think you make some excellent points here, Mark, especially when you point out that "all charities and NGOs are compromised to some extent with respect to politics by the laws that govern them." This is an obvious source of frustration for people who want the CAA to do what it (perhaps) cannot do, because any organizaton will have structural limitatons depending upon its mission, its history, and its sources of funding. Multiple advocacy organizations who play different roles seems like the answer, to me.

    I disagree that a new advocacy organization should not aim for non-profit status. No effective advocacy organization trying to wield influence on a national level can possibly afford not to seek non-profit status. Not only does non-profit status allow you to raise funds that will not be taxed, it allows your donors to write their donations off on their taxes. Donors really like that.

    It's not the non-profit status that ties an organization's hands, dictates its agenda, or that causes further fragmentation and disagreement in the community. It's the source of funding. Some non-profits take public funds, even though it ties their hand a bit, or impacts their agenda in some negative ways. But the alternative is probably to leave the money laying on the ground, and forgoing certain types of access and opportunities for advocacy.

    My own preference is for an adovocacy organization, with non-profit, tax-exempt status, that does not take public funds, or at least does not take them from DHHS, CDC, NIH, etc. The ACLU, the Southern Poverty Law Center, and the Innocence Project are all non-profit, tax-exempt groups who have conclusively proved that their hands are not tied, and the government is not dictating any part of their different agendas.

    Kim
  16. urbantravels

    urbantravels disjecta membra

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    http://www.irs.gov/charities/charitable/article/0,,id=96099,00.html

    http://www.irs.gov/charities/charitable/article/0,,id=175418,00.html

    It's important to be clear about this. The ACLU is not a tax-exempt organization, nor is the Sierra Club, because both of these organizations participate in political activities as "action organizations". The ACLU Foundation, a separate organization, participates in exempt activities and is organized as a 501 (c)(3), but donations to the ACLU itself are *not* tax-deductible to donors. The Innocence Project and the Southern Poverty Law Center are non-profits under 501(c)(3).

    As I believe has been mentioned in this thread already, there are benefits and drawbacks to being a nonprofit, and there are significant limitations to the specific *types* of advocacy that a nonprofit 501(c)(3) organization can engage in.

    ACT UP is most decidedly not a nonprofit organization.
  17. kdeneris

    kdeneris

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    Thanks, Urban Travels. I agree that an organization like ACT UP should not seek non-profit status. Doesn't really need it, either.

    I am vaguely aware that there are several different types of non-profit status an organization set up as a legal defense fund could seek, depending upon its stated mission and goals. Thanks again for correcting my erroneus assumption that donations to the ACLU are tax-exempt.

    Definitely there are benefits and drawbacks to non-profit organizations, and the decision on whether to go non-proift, or which type of non-profit to be, is not easy or simple to make.

    Kim
  18. jace

    jace Off the fence

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    I cannot agree with Mark here, ME/CFS is a term that connects the medical diagnosis of the past to the popular name created to hide an epidemic, it does not divide, but connects. It's the best acronym we have at the moment, and is the only way to refer to Myalgic Encephalomyelitis to those that previously have only heard of Chronic Fatigue Syndrome, at this time. Once retroviral causation is proved, that may change.

    Greenpeace is an excellent model, with a dozen or so activists in the early 80's they made as big an impact, perhaps bigger, than CND with their hundreds of thousand members, and have remained in the frontline of effective ecological activism since. I remember the early stunts, old leaky fishing boats sailing into danger. But there's a big problem. You need to be fit, to perform the sort of stunts that get the media coverage. Fit and/or careless of your own survival. It's much harder for those that are already in chronic pain. We could have a die-in in legislative centers and funding bodies, the CDC and the NHS...

    Greenpeace had one or two big donors at the start, and no fear of criticism. They just did it.


    Urbantravels excerpt of 501c legislation
    Are the beefs some of us have with the CAA because of this clause? I think not. Surely ours is not a party political cause, but rather a non political cross party cry for research, clinical trials, effective treatment, and support. I don't see that being consistent, intelligent and hard-hitting in their advocacy is precluded to the CAA here. I don't see any reason to be negative about and unsupportive of the WPI there.

    For those who still feel that the CAA acts on behalf of the sick people they were set up to represent, I recommend Hillary Johnson's latest blog "We thought we were almost done with XMRV"
  19. kdeneris

    kdeneris

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    I like ME/CFS because I spent 7 years undiagnosed, not knowing anyone else in the world who was sick the way that I was, until one day I ran across something Byron Hyde wrote, and the words, "Myalgic Encephalomyelitis." I had read the CDC's definition of the Chronic Fatigue Syndrome much earlier, but I knew I didn't have CFS, and from their description I assumed it was not even a real illness but a psychiatric disorder. I still use CFS after the slash, but only because I am American, and no one in this country knows what ME is.

    So to me, the designation ME/CFS not only connects us to our history; it connects us across national boundaries, and draws a dividing line between our knowledge of the disease, and our ignorance.

    Greenpeace is an awesome model. It really doesn't take many people to make a big impression through direct action. Do you have to be fit? It helps, it does give you some additional dramatic interest, it's more photogenic. But I think it's more the theatre of it, than the absolute requirement for fitness, that is important and draws meda attention. Maybe our sick bodies can be part of the spectacle, somehow, not just a barrier to taking action. Although, of course, ill health is a barrier to anything we do...but a few people still wanted to go out with Greenpeace in those leaky boats, anyway :) and I do like the idea of a die-in.

    As far as the 501c legislation, "substantial" seems to allow for some interpretation. It would be interesting to know how it gets defined in the case law.
  20. usedtobeperkytina

    usedtobeperkytina Senior Member

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    As you guys might know, I am now working for P-A-N-D-0-R-A. It is nice to see the favorable comments here.

    You should know, through conferences and e-mail and occasionally by phone, these organizations do speak to each other. Some serve with more than one of these organizations. For example, Dr. Ken Friedman serves for three organizations in different roles: P-A-N-D-O-R-A, New Jersey Chronic Fatigue Syndrome Association and IACFS/ME.

    But, each organization has what they think is the best strategy. I have also found the multiple organizations disheartening. But I now see it differently. As Mark said, an organization will collect money and then set their strategy. There is so much that needs to be done. Yet, there are so little resources. So organizations have to set priorities of what they think is most effective. Another organization might make a different decision. One is not wrong and another right; we all have the same goal. And who knows what will work and won't work? Only history can say. We can all just do the best we can of what we think is best.

    As Mark said, if there is a vacuum of something that is not being done, then an individual can step up and say they will try to fill this gap. All the patient organizations were started this way.

    Maybe, if we have multiple organizations trying different strategies, then the end result will be greater than the sum of its parts.

    Right now, it is what it is. As Dr. Unger from CDC said at May CFSAC meeting, "Nothing is obvious about CFS." I would submit, that is also true of how to bring change. The cause of the illness is not obvious (even post-XMRV), the symptom that defines the illness is not obvious, the best treatment is not obvious, heck, even the best name for it is not obvious. This leaves patients with differences of opinions about advocacy strategy, just as doctors are in disagreement, researchers are in disagreement, etc. I remember Dr. Bateman said that even she and Peterson have slightly different opinions as to how to determine who has "it". As I have said before, "If only our pee were blue." It sure would make things simple, huh? But we do not have breast cancer. We have that "mysterious" illness.

    We must work with things the way they are, not the way we want them to be. The multiple patient organizations are the structure we must work with. We got our illness "as is" so to speak.

    Someone here mentioned publicity. Before I started working for P-A-N-D-O-R-A, I started helping with the MCWPA effort to create publicity. This is moving along and has received lots of patient support. It seems to be filling a niche.

    One of the reasons I accepted the job with P-A-N-D-O-R-A, when offered, is that they believe in empowering patients and drawing on this vast resource of patients who want to make a difference. They believe in encouraging collaboration, inclusion, team-building. They believe in being responsive. Of course, many other patient organizations also believe in those principles. Some organizations that are local are having an influence across state lines.

    One of the things I would have liked is for CFS to have its own focus. Some organizations focus only on ME/CFS. But, WPI was able to get funding by including other neuro-immune illnesses: fibromyalgia, autism and atypical MS. Can you imagine how many obstacles they had to overcome? Not only did they accomplish their goal, they have had a positive effect on CFS, despite including these other illnesses in their mission. It's about doing what you have to do to make things happen.

    P-A-N-D-O-R-A embraces other illnesses: MCS, Fibromyalgia, Chronic Lyme and Gulf War Illness. I now understand that many of these not only overlap in individuals, but might actually be rooted in the same cause, but it is manifested in different ways. They are all NeuroEndocrineImmune Disorders. Also, all are greatly misunderstood.

    For patients, all I can recommend is that you financially support whatever organization or organized effort you think is responsible in how it is run and is working at a strategy you think will be effective.

    But remember, we are working toward the same goal. Hopefully, the collective effort, from multiple different angles, will make a difference, given this great opportunity we now have because of the XMRV news.

    Tina

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