Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 5, 2012.
You can view the page at http://forums.phoenixrising.me/content.php?532-The-Blame-Game-A-Way-Forward
Two thumbs up!
I really appreciate this piece. I hope Tom's and others studied appraisals of the PACE trials do become a kind of Rosetta stone for ME/CFS advocacy.
I think this happens too often for our own good. One the one hand it takes time and energy to track down what's going on - which makes it difficult - and there is alot of that going, particularly here. On the other hand, at times heated and sometimes seemingly incontrovertible stands are taken without apparently any fact checking.....at all
I think the idea the someone is out to 'get CFS' has been a key problem. There is certainly a logic to it given the poor funding given to this disorder and the behavioral emphasis that occurs particularly in the UK but except for the insurance companies, who will do what they can to not pay anything, I don't think anyone is out to 'get' CFS patients. I think alot of people on both sides are out to further their own interests and basically this has been a battle of who's interests win out; the behavioral side has won out in the UK and Europe with the pathophysiological side, for the most part, holding sway in the US.
From how I read Alex's proposal the best way to attack this problem of competing interests is to rigorously and analytically assess the facts on both sides. Once you do that then you have alot of solid ground to engage in what I believe should be aggressive advocacy
I deeply appreciate Alex's clear and rational thinking. I would like to see us get behind him and focus our efforts on clear research and calling to account systems that are violating their own ethical standards.
I have never believed that anyone is "out to get us."
Best wishes for continuing to chart an excellent way forward.:victory:
Very well said, I even find myself guilty of this some time. It's easy to be tempted by the simple explanations because they are comforting, they make sense of a complex situation, we humans are pattern seeking primates and we like to establish causes and intentions when they are not really there. Whether you like it or not the image we represent is a key component to changing the status quo and if you play into the hands of those who do want the current situation to persist then you are just shooting yourself in the foot.
Hi Vitalic, yes many of us do it (the blame game), though I try to keep it off the web. I suspect its for several reasons - because we are angry, we need to vent our emotions, or we are so deeply disturbed by how we are treated that we are looking for answers. I do think that ultimately certain people will have to accept some responsibility, but its a long road to get it to that point. Bye, Alex
PS The kind of response I am talking about can be found here:
This is the latest commentary by Margaret Williams. This is not an easy thing for most patients to write however. There are ways around this though, and at some point I may start a thread on how to do this and invite people who have written such articles to comment. I have seen this commentary elsewhere, but this is the easiest place to read it I have found so far due to how it is formatted.
So we arent going to raise a peoples army and over throw the government?? lol.
I agree with ya Alex, forget the blame game and look for causes and treatments for me/cfs through good research.
Great article, Alex. We need rational research more than anything else because rational research is the foundation for treatment.
That's a nice attitude to have, but it needs to be implemented in action to have any effect. It doesn't matter what people's attitudes are if they're just preaching to the choir on a message board. There are at least hundreds of thousands of us sick, along with healthy friends and family members that can organize and try to implement some action. It is clear we can't rely on the CAA to do this for us - no matter their reasons, the CAA has been ineffective at awareness and research, and so patients need to be a little more proactive. It's difficult, for sure, given our physical limitations, but it's clear no one else is going to get us out of this mess.
I imagine that in situation like ours - when there is very good reason to be angry - that we assume that just being angry will do it - that they will see our point and understand but sometimes it must just come off as being angry with little room for communication or accomodation. To resolve a confrontation both sides often have to give up something to move forward - you can't expect one side to simply fold - and I think sometimes that some advocates will accept only a complete reversal - and that hardens both sides. There is a logic to both sides of any argument - the best way to move forward I think it to understand the logic on the other side - then you can communicate effectively. If you're just angry its difficult to communicate in ways the other side can hear.
Patients need to be ALOT more pro-active to get results. Honestly, at least in the US, we do very, very little...small demonstrations, temporary email campaigns, ad hoc assemblages of patients getting together a couple times a year. Its rough....whatever the CAA did they did spend the money to hire an expensive lobbyist to assist them at the federal level. They did notch a few wins...the CFSAC panel is still standing for instance....and they did get us into the Congressional Research for Defense funding but research spending remains about the same. Its not an easy situation.. .despite the 1,000's (hundreds of thousands?) of people with CFS within driving distance of Wash DC - they were never able to get more than about 50 people to attend Lobby Day to advocate for CFS up on the hill.....The CFSAC meetings are usually almost empty as well - we need to take responsibility for our inability to do what it takes to advocate effectively.
Well I wouldn't make the choir (still smoking) but such fundamental issues behind the whole history of ME/CFS - not believed in the first place because limited medicine did not understand nor investigate - so opened the way for the mumbo jumbos. I agree we must support all who see (perhaps not fast enough for us yet) but now is the time to thank them and much encourage - the pathologies (extensive) discovered consistant and virology/immunology studies I think will find our answers. The pieces do seem to be coming together slowly.
But how can we constructively move things along.
Hi Christopher, there are some number of us trying to act as fast and as hard as possible, given our limitations. We don't have large numbers, which has always been a major problem. We wont get the numbers either as long as the negative messages are so strong, and the positive messages so weak. If I can find the evidence I intend to file several complaints, but getting that evidence will take months to years. One person can only do so much. Others are working on analyzing the science. For those too sick to do much, if we can get some letters/petitions/complaints sorted out, based on hard evidence, then we can simply ask for everyone to sign it before we send it.
Countering the psychobabble may help take the brake off advocacy. I have been told there are patients who are doing nothing because they have been convinced they are crazy - that needs to stop if its correct. More people need to learn to be assertive, if they can. Mostly I see this falling to the less sick, only the problem is the less sick have retained more of a life so there is no guarantee that they will have any energy to spare. We are too sick and too demoralized for real advocacy, AIDS style or otherwise. We need to find a new path - not their style of advocacy, but our style of advocacy. If you think you can see a path that will work, do start a thread on it. We need all the ideas we can muster. Bye, Alex
I think a lot of has to do with because patients are so weak, they are unable to overcome the inertia that is CFS advocacy standing still. I don't know how much we can blame patients for this. We saw how much of the CFS community rallied behind the WPI (XMRV issue aside) because they already had the funding and infrastructure in place to work on research for our illness. IT is a shame what happened with XMRV, and now with the Whittemores legal problems, who knows what the future holds for the WPI.
But it's true that the WPI isn't the only research center in the country (US) with an emphasis on CFS. We have Stanford's program, the Mt. Sinai center, the CFI, Peterson's Simmaron Research center, the center where Dr. Klimas just moved to - I may have missed some. These are programs that are already in place with the goal of helping us achieve some sort of wellness.
There is a definite lack of leadership on the advocacy front, and it's easier now than it ever has been due to the Internet to get patients organized. When a newly diagnosed CFS patient (if they're lucky enough to even get diagnosed) goes online to find out more about CFS, what do they find? They find this website which is a great resource for information and talking with fellow patients. They find the CAA website for more information - there are other forums as well, but what about people that are interested in fundraising and advocacy?
I don't know what the answer is, but we've seen how patients from all over the world can get on the same page - I saw it with the WPI before all hell broke loose - if they had something worthwhile to rally behind.
I have been thinking lately about Rituximab - if some patients do indeed improve from this treatment, why can we not focus on getting trials funded for CFS patients? I believe the Mt. Sinai with Dr. Enlander is trying to get a trial going. If we get even a subset of patients to better health, then I'm sure some of those patients would be able to both support themselves and better advocate for our illness. I know that I would be one of those people, but right now I am doing all I can to support myself with a job. I cannot spare energy for much else.
Driving the community to help fund a Rituximab trial as well as pressing the government and media to chip in as well with their assistance would produce a tangible result. It would be a start anyway.
I do wonder if Alex is right about our tendency to focus on what is wrong instead of what is 'possible' or on a future that can propel people into action.
Clearly we need some overarching organization as well - someone to take the bull by the horns - draft a gameplan, build a site to house it and then enroll as many people as possible. I think we could make a difference if we could enroll enough people to assist.
I veer between trying to be my usual rational self and indulging in the paranoaic blame game.
I think, given the cirumstances, that this is natural.
One thing we can all do is tell out story. Straight, without hyperbole, just what exactly has happened to us and how we live day to day.
I admit (not the word I was looking for but it will have to do) that I don't know what the appropriate vehicle for this would be or whether it would make any difference, but I do feel we need to be heard - beyond what physicians 'understand' our illness to be.
So how is this done? The image I've got is of institutions with dangling names of scientists. Each of these scientists is researching and/or publishing and/or speaking with the media, and their work reflects back on the institution.
It sounds like plan A is to comb through the published output of individual scientists, watching for patterns of misinformation. Plan B is to look at the conclusions drawn by the institutions, again searching for actionable claims. And plan C is to then contact the institutions, revealing the apparent abuses and asking for explanations. There is more to it, of course, but this is the beginning of holding the system accountable for its actions.
If I have it right, it looks to me like the missing pieces are the collator and the letter-writer. I've seen some good analysis of papers - some clear minds are out there picking the research apart. Are there already people in place who can pull dubious papers together according to origin (institution or researcher)? If yes, then surely somebody in this ME/CFS world has the skills to write a cordial cover letter-template requesting a review of enclosed materials and response in a timely fashion.
I like this idea a lot, Alex. Go in through their own back door, hold them to their own standards, and use the intelligence of many minds pooling research and information to force accountability. Always with great civility......that's a well-played game.
In reply to Christopher, post 14:
Hi Christopher, I think you are right in that we cannot blame patients. Our limitations are what they are. This does not mean we cannot explore ways to improve the situation, but the real test is whether or not they work - can they be used by our community effectively?
You missed a website. The first place most people look. The Wikipedia. What does that fount of wisdom tell us - essentially that we are all crazy, though they dress it up in fancy words. The vast majority of research, and in particularly biomedical research on ME and CFS, are simply ignored or dismissed in the Wikipedia. When the Wikipedia entry finally represents the current state of research and opinion on ME and CFS rather than being dominated by one limited school of thought, then the internet will be more ME friendly.
There is also this: there are upwards of 4000 members on PR I think, and maybe 2000 active advocates world-wide ... out of 17 million (the oft quoted figure) to 28 million patients (my estimate). These figures do not take into account the numbers (perhaps ten times as many) who simply use the net for investigation but do not register. So maybe there are 60,000 people using the net in this way. So this is 0.21% to 0.35% of the global community in advocacy and PR. I have no way of estimating how many are using other resources, but it probably isnt a whole lot more. So maybe 1-2% of us are on the net, are using net-based resources. Now this is distorted by the fact that most will be in third world countries. It is further distorted because many of us cannot use a computer due to neurological issues. Finally we have the problem that many of us are dirt poor - those who can even own a computer and internet connection are not the poorest members of our community.
If you use a figure of 2,000,000 patients, representing the USA and Europe primarily, the percentage rises to 3%. This is better but not much better. My fudge factor for guestimating how many are using the net is maybe 10%. Does anyone have data on search engine queries or whatever to give us a better figure?
So the question that comes up from time to time: how do we reach out to the rest? The second question is: how do we motivate some of them to do more to improve our situation globally?
I agree that if the phase 3 clinical trials of Rituximab for CCC ME/CFS work out as expected then a major focus of advocacy, if not the main focus of advocacy, should be to promote these results, and action based on these results. In the meantime I think we can do more to advocate for Rituximab trials where and when we think they can be made to happen. One of the things I like about the Rituximab research is it has the potential to fulfil both of my primary agendas at the same time: give us good ME research, and debunk bad ME research.
A serious game I hope Madie too - it is evident from SW (et al) writings that it is/was something of a game to him regarding ME and sufferers. The media onslaught of 2011 to attempt to discredit shows just how far he is prepared to go. Neither ranting nor turning to humour as buffoons have made inroads into their ignorance yet.
Your primary agendas sound good to me Alex. I wonder if it would be possible to bring all the evidence together here in one place - that is all the pathologies found - papers/findings (listed paper by paper) under specific headings if not already done so and call it THE EVIDENCE - I would think PR has to be the best place too. And fill the airwaves. Though I'm not a scientist nor have the energies to do it.
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