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HHS, NIH, AHRQ and CDC respond to Aug 2015CFSAC recommendations
- Thread starter Kati
- Start date
mfairma
Senior Member
- Messages
- 205
My whole response just blew up. I attempted to recreate it, but it's not what it was and I'm too exhausted to try to get it right.
The path to addressing the political problem needs to include a range of different initiatives that stem from, accord with, and seek to address systemic factors that hold our community back and our disease in place. We need to do a better job educating the broader community of patients about the nature and sociopolitics of the disease (beyond just PR), we need to focus more energy building up the institutional structures that will support good advocacy (knowledge, capacity, funding, etc.), we need our experts and disease organizations to do more to demonstrate unity of purpose and challenge the government (and we need to do more to make it possible for them to do that), we need to focus more on condensing our story into formats that journalists might read and find ways of teaching them, we need to do more to raise awareness and build support among the public through direct initiatives, etc.
The Thirty Years of Disdain paper was borne of this realization, that we needed to understand our story at a deep level and have the ability to educate ourselves and potential allies about the essentials of our story. Prior to it, there were few (if any) other sources that conveyed all the essentials of our story and even fewer with the scope, depth, and quality of analysis needed to convince. (Admittedly, the size of the paper that developed is a big part of that). Jen's MEPedia represents a stab at the same need. While I disagree with the approach, I think we need more of those sorts of initiatives, outside-the-box thinking driven by strategic needs.
Alternatively, consider protests. While the community occasionally discusses and has occasionally executed protests, they have been largely the traditional sign-holding sort of protest, which is bound to have limited impact because we are largely too sick and have too few healthy supporters to show up in numbers. I believe in the possibility of protests, but we have to find other types that suit our situation. There are many ways to skin a cat, we just have to find the ways not to. One of these days I might just get fed up and move to DC and sit in a bright, skin-tight bodysuit every day until they stop screwing us over . . .
In short, the organization that I would support would be one that could professionalize ME advocacy, one which could develop a deep understanding of the landscape and work systematically to build our community up. There is too little focus on what I see as short-sighted efforts -- such as putting energies into trying to get HHS to change, when we lack the political capital to hold them accountable, or trying to get Congress to care, when we have a disease seen so negatively by the public that comedians joke about it. We need an organization that thinks and acts strategically.
The problem though, ultimately, is that we have too little capacity to do all the things that we should be doing. Until we recruit greater capacity, the community needs to be a lot more shrewd about how and where it spends its energy. If we keep focusing on what is immediately in front of us at any given moment, we will forever spend too much energy fighting battles we are not likely to win. We need to pick the ones we can win.
My phones about to die, so that will have to do.
The path to addressing the political problem needs to include a range of different initiatives that stem from, accord with, and seek to address systemic factors that hold our community back and our disease in place. We need to do a better job educating the broader community of patients about the nature and sociopolitics of the disease (beyond just PR), we need to focus more energy building up the institutional structures that will support good advocacy (knowledge, capacity, funding, etc.), we need our experts and disease organizations to do more to demonstrate unity of purpose and challenge the government (and we need to do more to make it possible for them to do that), we need to focus more on condensing our story into formats that journalists might read and find ways of teaching them, we need to do more to raise awareness and build support among the public through direct initiatives, etc.
The Thirty Years of Disdain paper was borne of this realization, that we needed to understand our story at a deep level and have the ability to educate ourselves and potential allies about the essentials of our story. Prior to it, there were few (if any) other sources that conveyed all the essentials of our story and even fewer with the scope, depth, and quality of analysis needed to convince. (Admittedly, the size of the paper that developed is a big part of that). Jen's MEPedia represents a stab at the same need. While I disagree with the approach, I think we need more of those sorts of initiatives, outside-the-box thinking driven by strategic needs.
Alternatively, consider protests. While the community occasionally discusses and has occasionally executed protests, they have been largely the traditional sign-holding sort of protest, which is bound to have limited impact because we are largely too sick and have too few healthy supporters to show up in numbers. I believe in the possibility of protests, but we have to find other types that suit our situation. There are many ways to skin a cat, we just have to find the ways not to. One of these days I might just get fed up and move to DC and sit in a bright, skin-tight bodysuit every day until they stop screwing us over . . .
In short, the organization that I would support would be one that could professionalize ME advocacy, one which could develop a deep understanding of the landscape and work systematically to build our community up. There is too little focus on what I see as short-sighted efforts -- such as putting energies into trying to get HHS to change, when we lack the political capital to hold them accountable, or trying to get Congress to care, when we have a disease seen so negatively by the public that comedians joke about it. We need an organization that thinks and acts strategically.
The problem though, ultimately, is that we have too little capacity to do all the things that we should be doing. Until we recruit greater capacity, the community needs to be a lot more shrewd about how and where it spends its energy. If we keep focusing on what is immediately in front of us at any given moment, we will forever spend too much energy fighting battles we are not likely to win. We need to pick the ones we can win.
My phones about to die, so that will have to do.
Kati
Patient in training
- Messages
- 5,497
@Nielk i am sorry but you are adopting an adversarial tone that is counterproductive here.
Personally i think the more diverse organizations, the more approaches, the better. The last thing we need here is 'we are better than you' attitude.
We are all fighting for our health, for justice, for sound science, and for more funding for research. There is no need to take sides, or to villify other groups. Everyone deserve a voice, and everyone deserve competent and science based health care.
We are all sick here with various capacity in advocating. advocacy efforts should be praised and supported, but if a particular one is not your cup of tea, move on and support the next one. Or ever better, make your own.
Best wishes, respectfully.
Gogo in flight!
It was never "just a platform." As I said from the beginning, that has never been true. I am sorry for the miscommunication. We are not just a platform for pass through actions. That has never been true. We help initiate actions. We support other people's actions.
Our mission is public and clearly stated on our website. Perhaps we should add "and an advocacy organization" but I don't think that would necessarily make things more clear as we never intend to be a traditional advocacy organization like Solve was and is. Stating that would just create a different kind of confusion.
Our mission statement does not include specific policy views other than the broader ideal of fighting for our liberation. We hope to be able to decide on policy issues as they evolve in an emergent, democratic way but don't yet have the capacity to implement that.
I think what's missing is not a mission statement but a clear, transparent set of operating procedures so that people understand how to get involved and how decisions are made. We can commit to doing that in the first half of this calendar year.
As for where the money goes, I think that has been incredibly clear. So far $4,000 has gone to pay for a political consultant for Congressional outreach for 21st Century Cures. We publicly stated we were hiring a consultant, published the one page sheet we were using for outreach so it was really clear what we were asking for, and did broad outreach to the community to recruit constituents to participate. Perhaps 14 different people held meetings with their Senators' offices, asking for that language to be added to legislation. This was in August. It was a piece of advocacy, we organized it internally. I don't know how we could have been more transparent. (Unfortunately the bill died so that effort died, but we have been continuing to try to build on that initial outreach for future legislative goals and congressional education.)
A certain fee (I don't recall off the top of my head but a few hundred dollars) went to support a One Click Politics tool that sent a letter Solve wrote to the staffers of the Senate committee responsible for authorizing the CDC's budget. We flooded those staffer's offices to the point where they set up a meeting with a few of us (I couldn't make the call but I believe it was led by Charmian Proskaeur from Mass CFIDS who had also been doing CDC outreach). The $5 million was eventually put in. The letter was published on our site, the outcomes were also published. We also published dissenting views by those who thought perhaps we shouldn't ask for the money back and we offered a chance for feedback and debate on that question. I don't know how we could have possibly been more transparent there.
The rest (I need to check but call it $10,000) has gone toward building the site and staffing it when we had a part-time staff person (May-Sept/Oct). That staff person continued to develop the site, dealt with numerous technical problems, answered questions from patients, edited and added content to the site. To date we have raised very little money and the organization is $12,000 in debt to me. I cannot tell you how significant that is in the context of my family's finances (we are not rich) and the sacrifices and demands of the film, but that is how deeply I believe in this project. We are fortunately now in the black in terms of recurring expenses (Roughly $500/month for web hosting and subscription-based tools) and have some funds to hire a part-time staff person again. Once we have one or hopefully two staff persons manning the site, Beth and I can begin to address these larger issues re: how we operate when we are engaged in direct advocacy.
In everything we aim to be as transparent as possible. I think so much of what we do and stand for is an open secret – you have to read what we publish and pay attention to figure all of this out and I can understand how it's easy to miss. It's not codified in a single mission statement (we demand this research definition, these dollars, etc.) but that's fundamentally not the kind of organization we are or aim to be, in part because we want to be a big tent. Again, we can't put that into our mission statement because we hope all of that to eventually be determined as part of an emergent, democratic process by the patients and other community members who participate in our site.
What is opaque is the US Action Working Group. I am hoping to finish the statement re: #MEAction's part in it soon. As I said, the travel has been non-stop . We also hope the USAWG can announce soon a clearer process for getting directly involved in the work (for those who want to make that commitment) or giving feedback/input (for those who want to make a smaller commitment but still want their voice heard). There are differing views on this within the group and so we are trying to sort all that out and hope to soon.
Lastly, if all of that isn't clear, I would hope that folks reading this know me well enough to understand my commitment to the community, my ability to get things done (even if it takes awhile...), and exactly where my heart, intentions, philosophies are on a personal level. If that is not clear from the numerous interviews done, articles, written, work product (MEAction, film, MEpedia) over the last many years, I can state that personally, I support:
– At least the CCC or ICC
– At least $250 million/yr in US public research funding
– High quality science (e.g., strict criteria, more research on severe patients, bigger sample sizes)
– A strong patient representation embedded in any agency processes. To me that doesn't mean showing up for a day and speaking at a mike with no real influence, but rather sitting on all the internal committees – essentially getting what ACT UP fought so hard to achieve
– Using whatever tools necessary to achieve all of this, privileging neither engagement with the government nor protest, but rather doing our best to determine what is the most pragmatic course of action at any given time. Like Peter Staley, I agree with an inside/outside approach: http://www.meaction.net/the-insideoutside-strategy/ AIDS activists had to fight to get representation. Once they had it, they participated in the process. The difference between AIDS activists sitting on government committees and us sitting on government committees is that they had a viable exit option, where real media attention and street power could be brought to bear if the process was going off the rails. So they engaged with the process but they did so from a place of power. And when things went off the rails "inside," they went back to the streets. We don't have that power yet. We need to build it.
– participation, empowerment, openness, open source, self-governance
Again, right now for us, the biggest issue isn't even figuring it all out it's having the capacity to devote the resources of time and energy to build the infrastructure. We're a very young organization (not even a year old) and we are constantly running into limitations of just the sheer number of manhours it takes to keep all this going and not nearly enough (wo)men! Despite those constraints, I think in just nine months we have been able to accomplish a lot.
It was never "just a platform." As I said from the beginning, that has never been true. I am sorry for the miscommunication. We are not just a platform for pass through actions. That has never been true. We help initiate actions. We support other people's actions.
Our mission is public and clearly stated on our website. Perhaps we should add "and an advocacy organization" but I don't think that would necessarily make things more clear as we never intend to be a traditional advocacy organization like Solve was and is. Stating that would just create a different kind of confusion.
Our mission statement does not include specific policy views other than the broader ideal of fighting for our liberation. We hope to be able to decide on policy issues as they evolve in an emergent, democratic way but don't yet have the capacity to implement that.
I think what's missing is not a mission statement but a clear, transparent set of operating procedures so that people understand how to get involved and how decisions are made. We can commit to doing that in the first half of this calendar year.
As for where the money goes, I think that has been incredibly clear. So far $4,000 has gone to pay for a political consultant for Congressional outreach for 21st Century Cures. We publicly stated we were hiring a consultant, published the one page sheet we were using for outreach so it was really clear what we were asking for, and did broad outreach to the community to recruit constituents to participate. Perhaps 14 different people held meetings with their Senators' offices, asking for that language to be added to legislation. This was in August. It was a piece of advocacy, we organized it internally. I don't know how we could have been more transparent. (Unfortunately the bill died so that effort died, but we have been continuing to try to build on that initial outreach for future legislative goals and congressional education.)
A certain fee (I don't recall off the top of my head but a few hundred dollars) went to support a One Click Politics tool that sent a letter Solve wrote to the staffers of the Senate committee responsible for authorizing the CDC's budget. We flooded those staffer's offices to the point where they set up a meeting with a few of us (I couldn't make the call but I believe it was led by Charmian Proskaeur from Mass CFIDS who had also been doing CDC outreach). The $5 million was eventually put in. The letter was published on our site, the outcomes were also published. We also published dissenting views by those who thought perhaps we shouldn't ask for the money back and we offered a chance for feedback and debate on that question. I don't know how we could have possibly been more transparent there.
The rest (I need to check but call it $10,000) has gone toward building the site and staffing it when we had a part-time staff person (May-Sept/Oct). That staff person continued to develop the site, dealt with numerous technical problems, answered questions from patients, edited and added content to the site. To date we have raised very little money and the organization is $12,000 in debt to me. I cannot tell you how significant that is in the context of my family's finances (we are not rich) and the sacrifices and demands of the film, but that is how deeply I believe in this project. We are fortunately now in the black in terms of recurring expenses (Roughly $500/month for web hosting and subscription-based tools) and have some funds to hire a part-time staff person again. Once we have one or hopefully two staff persons manning the site, Beth and I can begin to address these larger issues re: how we operate when we are engaged in direct advocacy.
In everything we aim to be as transparent as possible. I think so much of what we do and stand for is an open secret – you have to read what we publish and pay attention to figure all of this out and I can understand how it's easy to miss. It's not codified in a single mission statement (we demand this research definition, these dollars, etc.) but that's fundamentally not the kind of organization we are or aim to be, in part because we want to be a big tent. Again, we can't put that into our mission statement because we hope all of that to eventually be determined as part of an emergent, democratic process by the patients and other community members who participate in our site.
What is opaque is the US Action Working Group. I am hoping to finish the statement re: #MEAction's part in it soon. As I said, the travel has been non-stop . We also hope the USAWG can announce soon a clearer process for getting directly involved in the work (for those who want to make that commitment) or giving feedback/input (for those who want to make a smaller commitment but still want their voice heard). There are differing views on this within the group and so we are trying to sort all that out and hope to soon.
Lastly, if all of that isn't clear, I would hope that folks reading this know me well enough to understand my commitment to the community, my ability to get things done (even if it takes awhile...), and exactly where my heart, intentions, philosophies are on a personal level. If that is not clear from the numerous interviews done, articles, written, work product (MEAction, film, MEpedia) over the last many years, I can state that personally, I support:
– At least the CCC or ICC
– At least $250 million/yr in US public research funding
– High quality science (e.g., strict criteria, more research on severe patients, bigger sample sizes)
– A strong patient representation embedded in any agency processes. To me that doesn't mean showing up for a day and speaking at a mike with no real influence, but rather sitting on all the internal committees – essentially getting what ACT UP fought so hard to achieve
– Using whatever tools necessary to achieve all of this, privileging neither engagement with the government nor protest, but rather doing our best to determine what is the most pragmatic course of action at any given time. Like Peter Staley, I agree with an inside/outside approach: http://www.meaction.net/the-insideoutside-strategy/ AIDS activists had to fight to get representation. Once they had it, they participated in the process. The difference between AIDS activists sitting on government committees and us sitting on government committees is that they had a viable exit option, where real media attention and street power could be brought to bear if the process was going off the rails. So they engaged with the process but they did so from a place of power. And when things went off the rails "inside," they went back to the streets. We don't have that power yet. We need to build it.
– participation, empowerment, openness, open source, self-governance
Again, right now for us, the biggest issue isn't even figuring it all out it's having the capacity to devote the resources of time and energy to build the infrastructure. We're a very young organization (not even a year old) and we are constantly running into limitations of just the sheer number of manhours it takes to keep all this going and not nearly enough (wo)men! Despite those constraints, I think in just nine months we have been able to accomplish a lot.
YES! We need our Cindy Sheehan!
Nielk
Senior Member
- Messages
- 6,970
The real point is - who are advocacy organizations fighting for. Are they representing and advocation for a fatigue based illness as per Fukuda or IOM or are they advocating for the acquired neuroimmune disease ME which our experts defined with the ICC.
ME needs to be separated from CFS. It is not the same. One cannot advocate for both. A disease can only have one criteria and one ICD code.
ME needs to be separated from CFS. It is not the same. One cannot advocate for both. A disease can only have one criteria and one ICD code.
mfairma
Senior Member
- Messages
- 205
Lol, that was not aimed at you, Jen. I know you are far more aggressive than that! And it wasn't meant as a specific criticism of anyone in particular, but at criticism of a tendency in this community. One that I actually think is pretty justified emotionally. It's hard not to hope when you feel you have no other options.
Maybe we should adopt a new aphorism -- what's that term for when you portmanteau two aphorisms? Yogi Berra-isms?:
Trust, but carry a big stick.
Lol – I didn't realize this was you
I like that!
Also well said, Kati. That's exactly the ethos of #MEAction: "Let's get to work!" That's exactly what we have been doing from day one and so we haven't had as much space and time to devote to fundraising and capacity-building, or to these issues. I don't agree with the criticisms but the opportunity to think this out and realize we do need to start developing policies - even quite simple ones at first - has been helpful.
caledonia
Senior Member
- Messages
- 4,610
@mfairma I agree with the need to also do longterm planning.
I wouldn't discount crowdfunding private research just because it takes a long time. What you described in terms of building professional advocacy is going to take a long time too. It's all going to take a long time. There is no quick fix for this.
But the important thing is even though the process may be messy and there may be disagreements (just like ACT UP I might add!), we as a community have started advocating in a big way that has never been seen before.
I wouldn't discount crowdfunding private research just because it takes a long time. What you described in terms of building professional advocacy is going to take a long time too. It's all going to take a long time. There is no quick fix for this.
But the important thing is even though the process may be messy and there may be disagreements (just like ACT UP I might add!), we as a community have started advocating in a big way that has never been seen before.
Nielk
Senior Member
- Messages
- 6,970
Kati
Patient in training
- Messages
- 5,497
Same goes with ME Advocacy, @Nielk.. i don't want to open a can of worm but early last year, there was a fundraising going on for a project and the organization changed the terms of the campaign which made me want to withdraw my support. i was quite upset about that and my trust for that organization is lessened due to that. And I refuse to sign a petition saying the NIH should 'STOP the study'. The approach is all or nothing, when so much can be done so all parties benefit.
'Before you point out the fingers at other, take a good look at what you're doing' applies here.
Energy would be best spent working towards the common goal.
Nielk
Senior Member
- Messages
- 6,970
MEadvocacy never changed the their of their campaign. From the day, that they were established they clearly stated that they were against the IOM and P2P contracts. They were for CCC or ICC.
It is some members her on Phoenix Rising who changed their mind after the IOM report came out. They felt that the IOM report was good and the criteria much better than they originally expected. They therefore changed their previous opposition to it. Which is fine. MEadvocacy didn't. They were upset that MEadvocacy did not stop their opposition along with them. This was made clear her a long time ago.
As far as MEadvocacy's petition goes. They call for a cancellation of the study as is. They want a proper study that is not fatigue based. If you don't agree with that, you are free not to sign it.
jimells
Senior Member
- Messages
- 2,009
- Location
- northern Maine
Congress certainly has the power to have a real investigation of why NIH won't research the illness and who is pulling their strings - if they choose to use it. In the 1970s the Senate Watergate Committee sure caused a ruckus. The Church Committee investigated illegal activities of the FBI, CIA, and the NSA in 1975. The establishment took this committee's work very seriously as well.
I have read reports that a number of Congresscritters have worked to improve conditions for us, but apparently none of them had enough juice to make changes. Past government misdeeds have ended up in the spotlight after investigative reports spurred Congress to take an interest and investigate. Perhaps this is the goal David Tuller is aiming at. He appears to be carefully and methodically building a very solid foundation. I can't wait to find out what he is building on it.
jimells
Senior Member
- Messages
- 2,009
- Location
- northern Maine
Yes, absolutely. I believe smashing PACE is the key to unlocking that door - the process will continue reveal damaging evidence. As the rats desert the sinking HMS PACE, some of them will start squeaking. That's how it works in other scandals.
jimells
Senior Member
- Messages
- 2,009
- Location
- northern Maine
Thank you. This is good to know. We don't hear from them very often on this forum - I hope that can change. Their quick and indignant response to the NIH Clinical Center study protocol is very encouraging.
@Nielk – Do you have a link? I don't remember where I wrote that or what the context was. I think what I must have meant when writing that was not that we wouldn't advocate, but that we wouldn't be a traditional advocacy organization, with a single set of policy positions where X is right and Y is wrong. We wanted to be a big, diverse tent, which is exactly what I describe after that first sentence you bolded. I am sorry that my language wasn't clear there – I can understand why that was ambiguous.
All I can say is that our intentions haven't changed. We have been advocating for things from the day we launched with internally-generated projects and actions. Moreover, probably 90% of the projects we promote are externally generated. In our mission statement we say we are "primarily a platform." That is still true. The vast majority of the work we do is supporting and promoting other people's projects. But that doesn't mean just being a pass through media site – we actively collaborate.
I am sorry you feel like we pulled the rug out from under you. I have explained what our intentions have been from the beginning as clear as I can and right now I feel like we are going in circles with in a way that is not productive for anyone. We will think about how we can message better but this is starting to feel a little unhelpfully legalistic. The solution is really simple: don't donate, don't support, don't use the site if you're not comfortable with it.
All I can say is that our intentions haven't changed. We have been advocating for things from the day we launched with internally-generated projects and actions. Moreover, probably 90% of the projects we promote are externally generated. In our mission statement we say we are "primarily a platform." That is still true. The vast majority of the work we do is supporting and promoting other people's projects. But that doesn't mean just being a pass through media site – we actively collaborate.
I am sorry you feel like we pulled the rug out from under you. I have explained what our intentions have been from the beginning as clear as I can and right now I feel like we are going in circles with in a way that is not productive for anyone. We will think about how we can message better but this is starting to feel a little unhelpfully legalistic. The solution is really simple: don't donate, don't support, don't use the site if you're not comfortable with it.
Nielk
Senior Member
- Messages
- 6,970
Talking about simplicity:
Before I could support MEAction, which has the community platform and advocacy section intertwined, i would need to know where MEAction stands on the IOM criteria. Does MEAction - advocacy promote the IOM criteria?
caledonia
Senior Member
- Messages
- 4,610
Perhaps I spoke too soon, 36 more doctors and researchers, plus the original 6 have signed a letter against PACE. At least some of them are members of the IACFSME.
http://www.meaction.net/2016/02/11/36-more-scientists-join-open-letter-to-lancet-on-pace/