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

[alex3619]

So, I'm still in the one goal camp... sort of. I'm all for multiple goals, I just thing we should address them one at a time.

Yes, and I was going to discuss how people receiving the petitions might take it, but at the time I was heading for full zombie mode. Thanks for saving my zombie brain.

 

[alex3619]

The situation will be be a lose-lose for everybody. If we take collective action, we have the potential for a win-win-win for all IOM sides.

I agree, which is why I am in this discussion. Yet there will always be dissenting views. Like it or not, advocacy is political. Not just in interacting with government, but intrinsically. Its about people with ideas, banding in groups, each pushing their own agenda.

In politics its bipartisan issues that get the most support.

 

[oceiv]

Bipartisan solutions are created by people on each side suggesting solutions and proposing win-win proposals. We're calling our equivalent of bipartisan proposals "common goals." because there are more than two sides. We've been discussing common goals and ME/CFS politics since the beginning of the thread. We have agreed on many goals and are now, at a standstill on two issues. That is, we've agreed on common goals, but we're debating back-and-forth about process.

Focusing on debating back-and-forth about our disagreements has risked the overall goal of enacting our common goals. Enacting our common goals needs to be the focus or else we risk a complete stall. The scenario I posed earlier. I again ask everyone to picture/post what would happen if we fail. Now, what would happen if we succeed? People have expressed their opinions and there are good points on each side about the two stalled issues. Now is the time to get refocused on agreements. Objectively, by the standard of making progress, we're moving away from agreement and going backwards.

We're at a standstill on these two issues

1) One goal at a time vs. Several or Many
2) Including/Not including quotes from the report

In the past, people have dealt with ME/CFS politics by either kicking out/ignoring at least one side. Or choosing to leave because each issue is that important. This is the situation we're facing. We need to make smarter and better decisions than past efforts. We can do this by again discussing how we get to agreement.

Here are my proposals.

One goal at a time vs. Several or Many:

1) Compromise: We agree on a reduced number of goals. Not one, not what we have, but somewhere in-between.

In order to achieve this goal, we each post our must-have goals for the first action.

Including/Not including quotes from the report:

2) Resolution strategy a: Compromise: If we include positive quotes from the report, we get to point out an equal number of improvements needed. We still take no position on the report.
Resolution strategy b: We go back to our previous position of not taking a position because we can't agree.

Are we satisfied by these suggested strategies? If not, suggest other proposals. Focus on win-win, not win-lose proposals.

Of course, there are political disagreements. Finding a way to work together despite disagreements was the impetus for this thread. It's how we choose to resolve these differences and disagreements that will determine our success or failure.

 

[Nielk]

Your title states how can we work together regardless of the IOM report.

I propose then that we leave the IOM report out.

If our target is NIH or HHS, they are very aware of the report. There is no need to quote from it.

 

[oceiv]

@Nielk , thank you for stating your preferred resolution.

I am in favor of both stated proposals on this issue. My title is about what we can agree on despite our views about the report.

One thing we still need to decide:

How do you or others suggest we finalize our agreement on these two issues? Once people state preferences, how will we decide? We need suggestions for getting to final agreement.

 

[Kati]

i don't think we exactly need to mention the IOM report.

i am voting for short but powerful demands.
1) My vote would be funding of 100-200 millions in funding for biomedical research per year for the next 10 years.
2) assign a medical specialty to the disease within 3 years.

 

[Valentijn]

1) Compromise: We agree on a reduced number of goals. Not one, not what we have, but somewhere in-between.

I think this works, especially if the goals are somewhat related.

2) Resolving strategy a: Compromise: If we include positive quotes from the report, we get to point out equal number of improvements needed. We still take no position on the report.

Pointing out problems with the IOM would be off-topic for most petitions, undermine our own use of it, and distract from and dilute the message. And on the other hand, we'd be seriously handicapping ourselves to include a blanket exclusion of any source, and the one sort of advocacy I'd have trouble with is watered-down advocacy. This isn't the time to be pulling our punches in making and supporting our points.

Of course, there are political disagreements. Finding a way to work together despite disagreements was the impetus for this thread. It's how we choose to resolve these differences and disagreements that will determine our success or failure.

At some point you have to accept that a handful of people will never compromise on anything. It's sad, but it's a reality of life which can't be ignored. People who have that problem are usually just not brought to the table in any decision-making process, though of course everyone else at the table will do their best to address the concerns of the non-compromisers.

 

[Valentijn]

i don't think we exactly need to mention the IOM report.

i am voting for short but powerful demands.
1) My vote would be funding of 100-200 millions in funding for biomedical research per year for the next 10 years.
2) assign a medical specialty to the disease within 3 years.

Without using the IOM report, how will you support the legitimacy of these demands? I'm not saying it isn't possible, but I'm curious as to how it would be done. Especially if we don't rehash the arguments which have failed in the past.

 

[oceiv]

Thanks, @Kati for stating both of your preferred solutions.

I think this works, especially if the goals are somewhat related.

Great.

Pointing out problems with the IOM would be off-topic for most petitions, undermine our own use of it, and distract from and dilute the message. And on the other hand, we'd be seriously handicapping ourselves to include a blanket exclusion of any source, and the one sort of advocacy I'd have trouble with is watered-down advocacy. This isn't the time to be pulling our punches in making and supporting our points.

At some point you have to accept that a handful of people will never compromise on anything. It's sad, but it's a reality of life which can't be ignored. People who have that problem are usually just not brought to the table in any decision-making process, though of course everyone else at the table will do their best to address the concerns of the non-compromisers.

I recognize that there are good points on either side of this debate. We haven't gotten to the point of being able to decide if there are some people unwilling to look at win-win proposals and compromises. Currently, we're stuck. We need to see if we can find agreement to get unstuck and are doing that now. What is your proposal or compromise on the IOM report?

 

[Kati]

Without using the IOM report, how will you support the legitimacy of these demands? I'm not saying it isn't possible, but I'm curious as to how it would be done. Especially if we don't rehash the arguments which have failed in the past.

Easy: It's the elephant in the room.

 

[Valentijn]

What is your proposal or compromise on the IOM report?

I'm quite happy to refrain from explicitly endorsing it in a petition or other document where we're making demands. But it just doesn't seem rational to not use it when it suits our purposes.

 

[Valentijn]

Easy: It's the elephant in the room.

What about an audience (politicians, the public, most doctors) who don't know that the report exists which supports our demands? They won't know the elephant is there at all.

 

[Kati]

What about an audience (politicians, the public, most doctors) who don't know that the report exists which supports our demands? They won't know the elephant is there at all.

What matters right now is that HHS has received the profuct they have requested from the IOM. NIH is aware of it. AHRQ is aware of it. CDC is aware of it.

You kind of have to hope that they will not continue incriminating themselves by doing nothing. Right now, patients have an opportunity to leverage the increased attention to the disease. You can speak to your congressman or political representant about anything you want, whether you mention IOM or not.

What matters right now in my opinion is to put {name of disease here} front and center and ask for research, ask for clinical trials, and so on.

 

[oceiv]

@Valentijn We can state that the report just came out. We're not taking a position on it. We can, if necessary state that there are good and bad parts - if that is still a suitable compromise. Then, we can state that we as patients need input into what happens next. There are endless possibilities that would give all sides something. We just need to find our version of bipartisionship in order to accomplish this action together.

Also, there are many orgs advocating either a completely pro-IOM message or mixed some good, some bad. An example of the latter is Invest in ME's report. We can all choose to support both this and another action, concurrently.

 

[Valentijn]

@Valentijn We can state that the report just came out. We're not taking a position on it. We can, if necessary state that there are good and bad parts - if that is still a suitable compromise.

If the audience is HHS and the sole topic is the IOM and the general implementation of it, then that is a sensible approach. But if the focus is on demanding funding, then the IOM is merely a source of authoritative quotes to support that demand, and it wouldn't make sense to undermine it in the same breath.

 

[Valentijn]

What matters right now is that HHS has received the profuct they have requested from the IOM. NIH is aware of it. AHRQ is aware of it. CDC is aware of it.

But those organizations are only particularly motivated to act if there's public pressure being exerted, and if they're going to look bad to the public if they fail to act. Hence an argument for a huge increase of funding, without strong support for it, is going to be unconvincing to the public, and therefore gives HHS a free pass to ignore it.

 

[Kati]

But those organizations are only particularly motivated to act if there's public pressure being exerted, and if they're going to look bad to the public if they fail to act. Hence an argument for a huge increase of funding, without strong support for it, is going to be unconvincing to the public, and therefore gives HHS a free pass to ignore it.

HHS is funding what will make them look good. There will come a day when HHS will look really bad if they do not increase funding for this disease. I cannot be certain if the time is now or not yet, but the IOM has sent a strong message.

Right now, I believe patients united could help in making them decide which way it will go. It's a window of opportunity if you will. If each patient phoned their congressman, and request action to be taken following the IOM report, then HHs would feel more pressured to act.

I myself made an appointment to speak with my provincial parliament representant, in a couple of weeks. i am not likely to speak about the IOM report, just because I'm in Canada and I need to work the politics of my country and there are many issues to discuss. Fingers crossed.

 

[alex3619]

I do not endorse the conclusions of the IOM report at this time. I do not endorse the use of the term SEID, even spelled out. I especially do not endorse the process used to get to the report, though I think most of the problems arise from that process and the panel did very well in a poor situation.

However we cannot with surety say the recommendations are wrong, the name is bad, and the process failed in this case, though the process and the product are not the same. What we can say is its a starting point for further investigation, including independent investigation, as in independent of the IOM etc. There are reasons to go with something new, even if its flawed. There are reasons not to.

Yet I have no issues citing the report, or quoting from it. The failures leading to the report do not detract from the things it did right, or that can be used in advocacy.

On important goals, an open ended funding goal is critical right now. That is about developing the goal, not whether the goal is important. Vague is good at this point, as long as the goal can be clearly stated.

Let me elaborate. I have read that that the new funding claim that has been made is $250 million. If we investigate this, and find it a valid point, then we should not ask for anything less, and I could still recommend asking for more. These are all about how to develop the goal, not whether we have the goal. Its also the case that we would have to investigate, for example, CFSAC recommendations and find out what points have already been made about providing the funding, including mechanisms. NONE of this is relevant to agreeing on a goal, its about how to implement a goal.

This thread should not be about process. I think that is premature. That is a new thread. More to the point, I think we will need a thread on each and every goal. If someone wants a common action involving multiple goals, we can cross link the threads or create a new one if necessary.

If someone cannot agree on a particular goal, then they can refrain from involving themselves in that goal. Does that mean they cannot support the other goals?

Like it or not, if we go to the extreme and do not mention the IOM report, we undermine our credibility. Its fine to say we do not endorse the recommendations, in part or in whole, but that point X about issue Y is important.

1) One goal at a time vs. Several or Many
2) Including/Not including quotes from the report

One at a time versus several or many is actually an extreme position to take. Its a false dichotomy. It depends on the action taken. This cannot be bundled like that and be workable unless we are talking about one time limited advocacy. Different goals will have different methods, though with overlap, and will take different amounts of time, effort or resources. It is in no way necessary for such a decision to even be made, that is about activity planning not goal planning. There is no vote necessary.

Quotes from the report are fine, endorsing the report is something else. Advocacy without the report has largely failed to achieve its goals. This is a new tool we can use. Endorsing the recommendations is not necessary. If we don't cite the report we lose credibility.

To the people who want to not endorse the report recommendations, whether they have posted yet or not, how many of you are happy to quote the report, and cite the report, while acknowledging that there is not universal agreement as to the usefulness of the recommendations? That the recommendations have not been subject to empirical or scientific validation? Or that the recommendations might be good, but it cannot yet be established that they are good as the necessary work has not been done?

When we are talking of a broad medium or long term goal list, its fine to be a little vague. The details come from planning. If we pin the goals to too many details we lock ourselves in, especially with respect to medium and long term advocacy.

I think we have to separate goals and action planning. They are different stages of the process.

Somebody help me, I am starting to sound like a manager!

 

[oceiv]

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

The first goal is an absolute must-have, for me. If I'm spending limited energy, it has to include an effort to better my own situation. Nobody should have to wait another 5 years for things to improve in patient care. Nobody should have to get worse because of continued governmental inaction. The fourth seems necessary, so that SEID doesn't turn into research criteria before being validated.


@Gingergrrl may or may not want to voice her opinion on goals and compromises.

@alex3619 This sounds like you are again endorsing a one-goal process. A separate thread for each goal sounds even more one-goal than before. I'm going to be blunt here. There is not agreement on a one-goal strategy. Yours is a win-lose proposal. What is your compromise??



To everyone: please continue to focus on solutions, agreements, compromise and objectively, moving forward towards action, not away from it.

 

[alex3619]

@alex3619 This sounds like you are again endorsing a one-goal process. I'm going to be blunt here. There is not agreement on a one-goal strategy. Yours is a win-lose proposal. What is your compromise??

Constructing the argument this way is misconstruing my position. I dispute the very point there is a one goal, many goal issue. If we lock that point up, either way, we are crippling our other goals.

I am also not advocating a one goal position, at all. How is this the case?

How is it either/or?

We cannot compromise if we cannot agree on what the point even is. Understanding the point is the first step.