What common goals can everyone work towards, regardless of their view of the IOM report?'

[alex3619]

Let me approach this from a different perspective. Let me presume the task is to write a letter of concern to the NIH or HHS (a better target I think) about issues that concern us. Here is the proposed list so far, unless I missed an update:

Common goals. I grouped similar goals together and made requests specific to reflect many others' discussion points. Because we don't want our governments to have wiggle room to say they've met a goal when they really haven't.

• We need better patient care for all patients, including for severe (housebound and bed-bound) patients who often have no care. This care must not include treatments that worsen the patients' condition.

• We need more research funding from our governments. This research must have well-defined cohorts. The research must include a broad range of patients, including those who are housebound and bed-bound

• We need a fundamental change in the overall policy of governmental engagement with the patient community. A first step in fixing this broken engagement model is for the broad patient community to have input into what happens next.

• Testing/validation of the SEID criteria is necessary

I have no disagreement with these concerns, singly or together. They do not however constitute an effective request for action. They are a concern list or a wish list. It will be filed in the little round basket that the kindly cleaners use to take stuff away to file properly.

To convert this to an articulated advocacy demand, we need to take each point and articulate it in a little more depth, looking at specific achievable ways to do this. That is where the advocacy should be headed. To do that you take each point and create a new thread. Then investigate ways to do each. Then make a determination. Then create yet another thread to recombine it all.

Otherwise all we have is a wish list. Most bureaucrats and politicians will not be interested. We should not, ever, presume they have the background and understanding to see things the way we do.

If however we create a document that takes the same concerns, and makes specific recommendations, then we have something tangible. Something we can directly relate to government action, with clear indications of success or failure from the NIH or HHS.

As I have already discussed, in the case of money this is not just about how much. That is a starting point. Its about what mechanism. We do not have to go into great detail, but we do need to be specific. Since this has been covered repeatedly by CFSAC recommendations I recommended we start there. Which may require research and discussion. Which may require a new thread. So why not start with a new thread?

HHS and NIH have been listening to our wish lists for decades. Total result: NIL, except for the IOM and P2P reports. For advocacy to advance we have to up our game. Or back something big, like the IOM and P2P. Otherwise we risk continuing the very mistakes that made advocacy ineffective for decades.

Since there is strong opposition to backing IOM, SMCI etc. then if we want unification we want to forge a new path. That does not mean that we can't have goals congruent with the IOM and P2P reports and SMCI agenda. It does mean however that we have to do a little research. Which takes organization. To do it fast requires compartmentalization. Like a factory rather than a political rally.

If you want a single action response, fast and accurate, then we need organization.

I am also, not to be further discussed in this thread, concerned with developing a set of common goals that transcend a single action.

 

[oceiv]

@alex3619 PM me. Our back-and-forth is not on-topic and has gotten disrespectful. I'm specifically asking for us to take this exchange to PM and that the PM conversation be respectful. I will be back later to respond.

From my first post:

Note that the whole first post is about what can we do tegether despite our differences on the IOM.

Note: This conversation has been split off from a previous thread. So as not to make this post longer, I've put my intro in another post.

I'll come out to represent the 3 undecideds. I think there are valid points on all sides. I also think there is much on which we agree (see below). I read this today on ProHealth. It may help put our discussions in a positive perspective.

The moderator helpfully added a link to the previous thread (context).

I don't have enough information to judge the IOM report yet. There are many questions yet to be answered about the report. If a relevant IOM committee member and a relevant government official can answer our questions in a sufficient way, then I may lean one way or the other. I would like to support the IOM report, if supporters also campaign to either change or clarify the report during its adoption process. We don't know if an amended report is possible. So far, the "anti-IOM report side" (too much of a simplification, but for illustration's sake) is voicing my concerns. But, I don't want to wholly dismiss the report. However, I'm scared what will happen if my concerns don't get heard and the report is adopted as is. Especially since this report was sponsored by SSA, which could affect people's disability status. Will government-funded research studies continue to include CCC-defined patients? If the "pro-IOM report side" (again simplification) would include my and others' concerns, then it would be easier for me to support accepting the report.

For me, the new name and criteria don't describe my illness well. The SEID criteria are like looking at my illness through a crack in the door. Only describes part of it. The CCC does describe my illness very well. The IOM report does not reflect the severity of my illness. If the report had noted that they didn't have enough info to include many severe patients, that their criteria is lacking in that respect. If it had also suggested specific action to correct this oversight, then it would be a bit more acceptable. Several years after I got sick, I was blessed by extreme luck. The luck pointed me to ME as my illness. I read the CCC and knew this was what I had. I sought out an out-of-state doctor to get a diagnosis. My local doctors continued to test me endlessly and to the point of exhaustion. They did not believe CFS could cause the severity and variety of symptoms I had. I feel that the same thing would happen with the new SEID criteria. Edit: See the post below for clarifications on how I don't think I wouldve gotten diagnosed with SEID criteria and how I want to save other patients from going through what I did. The last thing I want though, is to argue back and forth about it - too exhausted. If the "pro" side included my above concern and my other concerns in its campaign, I could potentially move my position.


We all seem to agree that:

• More funding for good research is needed

• We need to take advantage of the publicity surrounding the IOM report to push for increased research funding

• I think we all agree that severe patients need to be more included in research. That we should push for this to happen

• There are disagreements about this report and it has been divisive

• Many patients are scared that if their desired outcome about the report doesn't happen, it will have dire effect.

• There are both good and bad parts of the report

Many of us agree that:

• We can work together, despite differences

• There are valid points and concerns on all all sides

If we can come together, recognize all sides' concerns even if we disagree, then work towards common goals, despite our differences, this could be the start of new momentum for our disease. I agree with much of @alex3619 in post #5 of the previous thread. I also agree with much of @Bob 's post in a different thread. And yet we have different conclusions. That's fine with me, if we all agree to respectfully work together on our common goals.


Thanks for reading, if you got this far.

From my second post:

What I'd like to ask in the meantime, is what do others see as our common community goals? I'm interested in gathering opinion and consensus on what these goals are. If possible, also ideas on how we can advocate for these common community goals (goals on which all sides can agree).

Note that the context from the first post and title is about how we can work together despite our views on the IOM.

People may also state their positions on the IOM report, so that others can know where we're each coming from, but it isn't necessary, if members feel uncomfortable/stressed by doing so. This will perhaps allow us to respect everyone's positions, while at the same time also seeing that people of different opinions on the IOM report, can still have common goals. Rather than debating our differences, we can hopefully focus on our agreements.

To the people who have already replied and will reply, what do you see as our common goals and paths to implement them?

This thread is for respectful discussion and there has already been insightful , respectful discussion, thus far .

 

[oceiv]

To clarify for everyone: As far as clarifying our action, the action was still being discussed. It was not dictated by me, because the very premise of this thread was based on asking people how we can work together despite our views on the IOM. Our first step was deciding on common goals. This first step was and hopefully is still agreeing on common goals we would like to ask our governments to achieve. It is also our goal to ask for these achievements/results from the government.

To be clear, this is the definition I'm using for goal:

the result or achievement toward which effort is directed; aim; end.

The common goals were in the process of being pared down and I had asked for everyone to list their must-have goals. I'm asking now for that process to continue.

Regarding @SOC 's point, I agree about needing advocacy advice. But even a professional advocate would only be able to go so far on getting sides to agree. The extent of agreement depends on each participant's willingness to compromise and agree to/suggest solutions in which both sides win.

@Kati I agree about specificity. My must-have goals were in my preference order, so you all know what is my bottom line. They were not a suggestion for our order of goals. I'm asking that the patient-care goal be adopted by us.

As to @Sasha 's request for respectful discussion, I agree. I am not appointing blame and think we can choose to move forward positively. Respectful discussion is what I originally asked for and we had done so well.

 

[aimossy]

I think it helps to keep the common goals as close as possible to what patients view as the most pressing needs/concerns of our group as a whole. This also may encourage inclusiveness within all different view points and respect. I think that also helps with clarity in the sense of getting bogged down in demands and details while working through the process.

Oceiv is trying to steer through a process to get to a certain point of agreement with common goals/patient needs and concerns. I think that sticking with that line is a good way to go for starting points. You can hash out what to do with these goals/concerns and how best to apply them in action that is acceptable for many after you get through that initial process.

I know what I would like to see happen but that is not for where things are yet in any process.

@oceiv I think Alex is right in the sense that you can decide about one goal or more depending on what actions to take down the track. But if we have letters and petitions in mind, we can come with what your trying to achieve here and contribute to some input into it for you. You have outlined these as possibilities. I will add my thoughts to these and try an be constructive.

We need better patient care for all patients, including for severe (housebound and bed-bound) patients who often have no care. This care must not include treatments that worsen the patients' condition.
I have the upmost respect for this being outlined and agree about it being a patient concern and goal, but feel it needs focused on care more so than treatments, at this time, just because there are no agreed treatments yet. I also feel that Doctor education and Public education is part of this and I would highlight that this needs to be the main part of the goal with care stipulated further. Because there is no way we will get better care if our Doctors and families are not educated. This whole emcompassed area including patient care is fundamentally about enforcing an attitude shift. That attitude shift through education will result in better care and support/ understanding. I think this is all a very big deal, and interrelated.


We need more research funding from our governments. This research must have well-defined cohorts. The research must include a broad range of patients, including those who are housebound and bed-bound
I would add 250 million annually as we should go big and inline with prevalence and functional loss to society etc and sing from the same song sheets. I think it is reasonable that we ask for CCC criteria to be used in research criteria at this time until newer criteria are proven and ask them to encourage this whether it be along side other criteria. I know we cant force the position, as is so for anything else we outline but I see no harm in saying something like this. I would also would have these needs/ goals here equally important with the top ones above. If I was doing a petition I would put no more than these two top areas in a petition. A letter of sorts is different.

We need a fundamental change in the overall policy of governmental engagement with the patient community. A first step in fixing this broken engagement model is for the broad patient community to have input into what happens next.
I cant comment on this as this needs USA people comments, I don't know USA systems well enough. But I would suggest asking for an apology regarding this illness being ignored for so long and even when so much research has shown compelling findings of abnormal pathophysiology and patient pleas have been dismissed. Heal the rift and trust, say sorry and find a way to effectively engage and include patient involvement in any changes involved with (cant find words ongoing changes/things) of this illness.

Testing/validation of the SEID criteria is necessary
I wouldn't even mention this as I would put that into more research section and be wary of any negativity. You can reframe it to 'new criteria' so you don't need to have IOM or SEID mentioned if it would polarize people and prevent support for voicing the needs.

Just thoughts, I agree with mentions on the thread about using any information that backs up these needs above academically. The better research and academic institutions information/quotes adds credence/evidence to what your saying is needed by the patient community. I'm not saying this is not good as an advocacy exercise if IOM and P2P aren't used I just think that it is a hell of a lot stronger with using reports they paid for to have done.

Their own commissioned reports they initiated and paid for recommend they should do this. It is like hitting them over the head with their own stick. Looks bloody stupid if they don't follow through with their own process - mind you no surprise if they need forced to do so.

 

[alex3619]

But I would suggest asking for an apology regarding this illness being ignored for so long and even when so much research has shown compelling findings of abnormal pathophysiology and patient pleas have been dismissed.

Its to their credit that the Norwegian government has done this. This is something a President could decide on.

 

[aimossy]

Its to their credit that the Norwegian government has done this. This is something a President could decide on.

Do you mean we shouldn't ask for it Alex or keep asking? Can the agencies not apologise, does that have to come from the President? It is only a suggestion from me I may have taken it too far. ha!

 

[Kati]

I disagree with the priorities. Getting folks health care when there are no standards of care to start with is just a recipe for disaster.

What is needed is substantial funding for research and a systematic program into how that money will be spent. I would feel much better if there were Centers for Excellence so at least standards of care could be established, and shared in the communities.

First, the money. The research- research divides into hard science and clinical care- what treatment is most effective, antivirals or immune modulators? What is the best way to start treatment with people allergic and intolerant to everything? these are research questions that need to be asked.

No money, no anything.

I am kind of pulling out because it's going nowhere.

 

[aimossy]

I think kati's statement and many others have highlighted why its import to go for one important goal if doing a petition. As soon as I gets more complex your in hot water and people will not back petitions.

 

[oceiv]

@Kati I hope you reconsider. Getting patient care, for me, right now is even being able to get a doctor to see. Any doctor, not even an ME/CFS doctor. It is legal for doctors here in the U.S., GPs, cardiologists, rheumatologists to refuse any treatment at all because a patient has CFS. That is, I can't get treatment from any docs right now (not ME/CFS docs) for my co-morbid conditions or even get a check-up from a GP, because docs are allowed to refuse me treatment on a problem unrelated to ME/CFS, just because I have ME/CFS. Asking for docs not to refuse treatment is patient-care. If you and others can see any doctors, for OI, for a check-up, for something that flares up, consider yourself very lucky.

When Alex and I were discussing outside the thread, we talked about the broader political situation here in the U.S.. Wrt to both funding and non-funding issues, the congress is in near-complete gridlock. They agree to pass things, even necessary things only very infrequently. As a very stark example: We are 7 months into a war that has not been debated or authorized by congress. For years, dozens of Presidentially-appointed positions were vacant. For months of this war, congress didn't agree to approve funds. We are at that level of dysfunction. Our attorney general has been trying to leave after years on the job. He cannot leave because the vote on his replacement is not allowed to go forward. Getting U.S. attention before they agree on the once-a-year funding emergency bill, is a miracle. If we reach them on any issue after the big budget negotiations, it will wait and languish. It will not be implemented until 2017. If I wait to see a doctor, any doctor, till then, I'm really not sure how I'll survive.

To address what I missed earlier, @Nielk I agree more with you on more issues with the IOM report than with others. But I disagree with rejecting the report completely. Those opinions are on the report, itself, not the thread. This thread has not been taken over by pro-IOM people because I'm still here.

I was earlier going to say that things might look up/tomorrow/today (depending on your timezone) on this thread, but I'll just say, that one way or another some sort of positive action or advocacy is going to happen soon. I hope there will be a short-term one here. But if not, hopefully other positive efforts will occur. I think this group could still accomplish great things if we agree to do so. But we can only do so if we compromise.

 

[Sasha]

Do you mean we shouldn't ask for it Alex or keep asking? Can the agencies not apologise, does that have to come from the President? It is only a suggestion from me I may have taken it too far. ha!

In Norway, it wasn't the president who apologised but the Norwegian Directorate of Health. I don't know what the US equivalent of that is, but clearly it's some sort of government thing. Maybe the DHHS? Wouldn't that be great?

 

[Sasha]

I am kind of pulling out because it's going nowhere.

Come back! Come back!

The thrashing-out stage of advocacy in a group can be quite head-banging. This is just a stage. Hang in there with us!

 

[Sasha]

I was earlier going to say that things might look up/tomorrow/today (depending on your timezone) on this thread, but I'll just say, that one way or another some sort of positive action or advocacy is going to happen soon. I hope there will be a short-term one here. But if not, hopefully other positive efforts will occur. I think this group could still accomplish great things if we agree to do so. But we can only do so if we compromise.

I hope everyone appreciates all the work, time, and care that you're putting into this action, despite what's clearly an extremely difficult personal situation for your right now.

We've hit a tricky stage in things but we'll get through it. We just need a roadmap and to discuss the right things in the right order, I think.

@oceiv, can I burden you further and ask you to reiterate, just in two or three sentences, what it is you want from us at this point? I just read several thousand words of this thread this morning and I'm a bit fuzzy on it.

For example:

Do you want us to give our comments on each of your four priority points to make them specific enough for them to have a realistic chance of being taken seriously and getting us what we want and not what we don't?

Or do you want us voting on the four priority points (the fourth is proving contentious)?

Or something else at this point?

Sorry to be dim - I'm feeling a bit overwhelmed by the sheer volume of to-and-fro and honestly don't know where we're at now.

 

[taniaaust1]

Let me approach this from a different perspective. Let me presume the task is to write a letter of concern to the NIH or HHS (a better target I think) about issues that concern us. Here is the proposed list so far, unless I missed an update:



I have no disagreement with these concerns, singly or together. They do not however constitute an effective request for action. They are a concern list or a wish list. It will be filed in the little round basket that the kindly cleaners use to take stuff away to file properly.

To convert this to an articulated advocacy demand, we need to take each point and articulate it in a little more depth, looking at specific achievable ways to do this. That is where the advocacy should be headed. To do that you take each point and create a new thread. Then investigate ways to do each. Then make a determination. Then create yet another thread to recombine it all.

Otherwise all we have is a wish list. Most bureaucrats and politicians will not be interested. We should not, ever, presume they have the background and understanding to see things the way we do.

If however we create a document that takes the same concerns, and makes specific recommendations, then we have something tangible. Something we can directly relate to government action, with clear indications of success or failure from the NIH or HHS..

I think alex's post nailed it, we do not want to give them just another broad wish list like has been thrown at them over and over. I completely agree it has to be more then just that, we also have to be more specific to forge a path for the politiicians on how to do it and often they do get it wrong when it comes to us.

We need more like an actual action plan for them, something achievable which could be followed to improve the whole mess and we need to use very strong supporting things to back this plan up.

 

[taniaaust1]

I hope my posts aren't too disjointed as Im unable to read all this thread so only read bits and pieces.

Regarding @SOC 's point, I agree about needing advocacy advice. But even a professional advocate would only be able to go so far on getting sides to agree. The extent of agreement depends on each participant's willingness to compromise and agree to/suggest solutions in which both sides win.

It's not just that when it comes to getting professional advocates involved in ME/CFS but also the fact this whole illness confuses the professional advocates to the point they are actually usually unable to advocate well at all and become over whelmed. (I have personal experience with professional advocates trying to advocate my ME issues and they were useless as they couldn't get their heads around this illness, its too complex for anyone who doesn't truly understand it).

I think only this community itself can talk and try to figure out the best way to move forward without third parties who dont understand it, trying to speak of our issues for us. That's why discussions like this thread are important.
.

 

[Sasha]

BTW, I like the idea of looking at CFSAC's and Solve's recommendations (from Wednesday) to help build our own. We all need to be shouting for the same or similar things. Doesn't matter whether you do or don't like Solve: we can take what's good from them, and forget the rest. Asking for the same/similar things as Solve doesn't imply support of Solve.

We're not in a position, in this forum format, lots of us disagreeing, all in different time zones, to come up quickly with well-drafted demands. I think we need to cannibalise demands that are already being made and that have already been thought out and researched.

If we don't do this in a reasonable timeframe, we'll lose the moment.

 

[taniaaust1]

I think kati's statement and many others have highlighted why its import to go for one important goal if doing a petition. As soon as I gets more complex your in hot water and people will not back petitions.

nods I agree. Everyone here will go around in circles as its all too complex and with too many views. Maybe we should be only working on one or two things at the most at a time. One or two top priorites, no more and sort those out first.

 

[alex3619]

In case there is any doubt, with regard to a one action proposal like a letter or petition I will support one with a list of well thought out concerns. As I stated in: http://forums.phoenixrising.me/inde...w-of-the-iom-report.36380/page-12#post-578652

So this means I would support action based on the list so far.

What I was trying to do in the post I linked above is point out there is a fast and easy and efficient and effective way to do this, by taking each point, basically putting a team on it in their own thread but with others able to comment, finalize each point, and come back with a rock solid demand we can combine from their efforts. To do that though we have to know who we are going to be making that demand of. Each team would cite references if needed.

It was not clear to me that many wanted a single action from the early posts, though this was clarified later on.

Clarifying another point, one goal or many depends on what we want to do. An advocates letter can have multiple related points. A petition can have many points but its more effective with just one. There can be a lot of work in developing a proposal for just one single goal. I have tried to cover just about every case I could think with different options in mind. For a single action I am happy to go with the list, though if its a wide petition then I would be happier with one focused point, hammered home. Though if worded right then every single one of our goals is research related. Even asking for better care is research related, as its about disseminating what is currently known to the medical community. The average doctor does not know very much about our problems.

We have had success with two group signed letters, one from our experts and one follow up from our advocates. I think we could do that. In this option I would suggest a starting letter, with a core group signing it after an offer of input from other advocates from all over. We could then open it up for mass signing just like a petition. At various milestones we could then send a copy of the letter to the target audience. One letter. Sent many times. With more and more signatures.

Or not. We still have not decided on the target audience or the method of advocacy. We really need to know the target group before developing goals to something concrete and workable, that is finalizing the wording.

I do think that funding and support for better research is a primary goal. I would also put it first on my list of priorities.

 

[mango]

I hope everyone appreciates all the work, time, and care that you're putting into this action, despite what's clearly an extremely difficult personal situation for your right now.

yes, it really is deeply appreciated!

 

[alex3619]

Do you mean we shouldn't ask for it Alex or keep asking? Can the agencies not apologise, does that have to come from the President? It is only a suggestion from me I may have taken it too far. ha!

We should ask for it. Why not? My point was that, while agency heads might be afraid to do something, it could be a Presidential act to make such an apology. That is what heads of state can do. Others can too, but its politically harder for them.

 

[alex3619]

We're not in a position, in this forum format, lots of us disagreeing, all in different time zones, to come up quickly with well-drafted demands. I think we need to cannibalise demands that are already being made and that have already been thought out and researched.

If we want a really really fast response, then supporting existing responses (directly or indirectly) is the way to go. We can follow that up with something more if we want.