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

[Sasha]

Multiple vs single goals

I can see both sides on the issue of whether to have one demand at a time rather than a sequence (I think that's the choice we've got).

I don't know how to judge which is better because I don't know who the people on the receiving end of it (Congress?) would perceive a petition with a single goal vs one with multiple goals.

I suggest we ask someone (or several someones) who are on our side and know about this. Does anyone have a friendly politician in their circle? What about asking Llewellyn King?

Mention the IOM report vs not
We have several audiences for any demands that we make: (1) patients and supporters who we want to get behind our document; (2) the direct target (Congress, NIH, etc.); and (3) the general public, who we'd be trying to get interested via the media.

Apart from the NIH or other agencies who paid for the report, we can't assume that any of them have heard of the IOM report.

It's our big weapon and it's likely that only a tiny percentage of patients will hate the report so much that they won't be willing to use parts of it to their advantage (5%? 1%?). I think we'd lose far, far more support from patients by not using it than we'd gain, and we'd have far less impact on our other audiences. Undermining the report by saying 'some patients don't agree on recommendations that are irrelevant to the points we're making' makes absolutely no sense to me.

I'm concerned that an abstract principle of seeking to please all at the lowest possible common denominator is being placed above our actual goal: which is, to get our demands met.

Let's not have the 5% tail wag the 95% dog.

Project management
I agree with @alex3619 that we've got several stages of decision-making and it might be helpful to address them as they arise. I see them as:

1. Agree a list of demands and detail them out (so that we're not just asking for 'more funding' but specifying how much, what for, etc.).

2. Having seen what those demands are, see whether they best stand alone or as a group (and consulting with politicians or those who know how that works, including CFSAC reps, perhaps, would help).

3. Make a decision about citing the IOM report.

Just my view. Nothing is a 'deal-breaker' for me in terms of not being willing to sign a petition but at this stage I can't see myself putting any energy into a campaign that didn't use the IOM report to turbo-boost its chances of success.

 

[Sasha]

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.

I don't understand what you're saying, Alex. Logically, you've either got one goal or you've got more than one goal.

What are we all missing?

 

[Sasha]

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.

I think that the fourth goal could be construed as an anti-IOM move that could undermine the report's chances of being accepted. You could lose a lot of people there. I think the first three goals (detailed much more specifically) would get universal agreement among patients, but the fourth could scupper the petition. My solution would be to remove that goal (even though I might broadly agree with it in a perfect world, I'd have concerns that pushing it in this way might lead to a reversion to the status quo, and many might feel the same).

The top three goals seem to belong together; whether singly in sequence, or as a package, I think they make a good set. The fourth point doesn't seem to belong to it.

 

[alex3619]

Nothing is a 'deal-breaker' for me in terms of not being willing to sign a petition

Actually I think this is a single goal position. To me this thread is about creating goals. What petitions, what is included, who they are for, etc., are planning decisions.

Goals are not detailed plans. Elaborating each goal is a step in the process, that needs to be done for each and every goal, whether that is acknowledged or not. It is however about elaborating a goal. If we have to do this kind of thing at the goal selection stage, we will either fail to get workable advocacy goals beyond a single action, or we will be locked here till everyone leaves from exhaustion.

Petitions are actions taken for achieving goals. They are not goals in the broad sense. Each goal might have a series of actions. Different goals can be combined in a single action. Goals and actions are not the same thing.

 

[Sasha]

Actually I think this is a single goal position. To me this thread is about creating goals. What petitions, what is included, who they are for, etc., are planning decisions.

Goals are not detailed plans. Elaborating each goal is a step in the process, that needs to be done for each and every goal, whether that is acknowledged or not. It is however about elaborating a goal. If we have to do this kind of thing at the goal selection stage, we will either fail to get workable advocacy goals beyond a single action, or we will be locked here till everyone leaves from exhaustion.

Petitions are actions taken for achieving goals. They are not goals in the broad sense. Each goal might have a series of actions. Different goals can be combined in a single action. Goals and actions are not the same thing.

Fair enough, but I'm using 'petition' as shorthand for 'means of delivering our demands'. I agree, let's agree the goals first.

 

[alex3619]

What I thought we were talking about here was more a manifesto than a petition, of the things we want to achieve. Such a manifesto is not about actions, its about what we want actioned. A manifesto is for us, not HHS or IOM or the media, though we can indeed use it in advocacy. We can also have people sign up for a manifesto.

What we do with it after that is a whole other step in the process.

 

[alex3619]

I have written goal manifestos for ME before. Let me see if I can scrounge an old one up.

PS This is an old manifesto that also confuses goals and actions:

http://forums.phoenixrising.me/index.php?entries/musical-labels-part-two.1161/

I think my manifest of goals were written on an old advocacy thread, probably years ago. If I have time and energy I might look later.

 

[Sasha]

What I thought we were talking about here was more a manifesto than a petition, of the things we want to achieve. Such a manifesto is not about actions, its about what we want actioned. A manifesto is for us, not HHS or IOM or the media, though we can indeed use it in advocacy. We can also have people sign up for a manifesto.

What we do with it after that is a whole other step in the process.

Then we're at cross-purposes, because I thought that we were trying to come up with a list of demands to present to Congress/NIH/others in fairly short order to take advantage of the IOM report having come out, rather than a document primarily for internal use.

@oceiv, what do you see as the purpose of what we're doing?

 

[Valentijn]

The top three goals seem to belong together; whether singly in sequence, or as a package, I think they make a good set. The fourth point doesn't seem to belong to it.

I agree - I think SEID validation is a minor and peripheral matter, not a core goal to push heavily for.

 

[alex3619]

The point of this thread is discussed here: http://forums.phoenixrising.me/inde...eir-view-of-the-iom-report.36380/#post-576124

This thread is not about NIH, or IOM, its about common advocacy goals. If we are confused about that there will be disagreement. If this confusion is not resolved, then we are only burying the disagreement, not dealing with it.

 

[oceiv]

I saw the discussion as us all together coming up a list of goals (things we want to achieve) to send to our governments in short order. To take advantage of the moment. I thought we were discussing and agreed on most of three lists for this purpose.

I'm going to go into the thread history of the SEID validation goal. It was suggested by @alex3619 in many other threads. I brought it up here and asked if we had agreement. We did. I added it to the list. We had agreement on those lists. The validation was then brought up by someone else (maybe @medfeb ). We also had a discussion about fears that SEID criteria would turn into research criteria and hang around unvalidated, like Fukuda. This to explain why it's there: because we discussed it and had agreement. This is not to say anything either way about the goal, just to explain its history in this thread.


4-10 goals isn't a manifesto and most of the things we agreed on on were not asks for the government, but rather ways to let each other know we're each being heard, people have good reasons to disagree about the IOM and we can work togther despite disagreements. We also had a little over 5 government asks, suggested by myself and others. I integrated the discussion by everyone into both lists Goals can be both general and vague. The U.S. govt has taken vague goals for our disease like "patient input" and turned them into "we consulted with one patient group. We've done our job." They do not do well with vague.

The thread was split off from a discussion on the IOM. Hence the title.




See these posts for thread purpose and agreements:

http://forums.phoenixrising.me/inde...eir-view-of-the-iom-report.36380/#post-576124

http://forums.phoenixrising.me/inde...eir-view-of-the-iom-report.36380/#post-575804

http://forums.phoenixrising.me/inde...eir-view-of-the-iom-report.36380/#post-576195

http://forums.phoenixrising.me/inde...ew-of-the-iom-report.36380/page-5#post-576690

http://forums.phoenixrising.me/inde...ew-of-the-iom-report.36380/page-5#post-577183

See page 2 for start of SEID criteria discussion

I added a note to the first post, linking to my intro.

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.

This post is rushed and its content and its tone will reflect rushing and not anything negative. Goodnight.

 

[Sasha]

Sorry, @oceiv - I missed the SEID validation point being added to the list and should have voiced my disagreement sooner. This has become a long thread now and it's getting hard to keep track of things.

Sleep well!

 

[alex3619]

If this is about a list of demands, it needs to be specific. It needs to be specific as to demands, and specific as to who we are demanding it of, and specific as to how we see that can be achieved. This is a very different thing from a list of goals that everyone can agree on.

If its about a list of concerns, that is different again.

If its about asking for additional clarification, review or further studies related to IOM issues, that is yet another thing.

Dealing with IOM issues in a general way also brings up the P2P. Both need to be considered in many respects.

How we target NIH might be very different from how we target Congress. Our list of demands would reflect that.

As I see it we have a mixed confused agenda, and it might be good to specify something very very clear. It is not good enough to go into general goals for specific actions without knowing from the start what those actions are. I was talking strategy. Others were talking tactics but without sufficient information to distinguish applicable from unworkable tactics. They are different levels of advocacy.

Goals despite of our position on the IOM is not well reflective of a single action discussion. Much of the content of this thread is not very helpful for a single action discussion.

Pulling back from a single action discussion to a wider discussion runs straight into all my points.

I very much would like to see a list of concerns sent out to both Congress and the NIH. Out of those concerns we might then develop a list of actionable demands, with mechanisms and realistic outcomes. This is a multistep process if we want to see results and we want to act fast. It still requires separate threads due to the research required. Once each subprocess is finalized we can then pull it back into a single thread for the final actionable product.

Not addressing the IOM in a list of concerns is problematic. It is better to include both positive and negative issues, or even just negative and acknowledge that positives exist but they can take care of themselves.

Collected actionable demands means dealing with the politics of the now. Again, not mentioning the IOM report, and the P2P report, is failing to address the politics. Its the mistake advocacy has been making for at least a decade. Its ignoring the elephant. Government loves that.

Mixed agendas pervade the entire discussion. We need to separate them.

 

[Nielk]

Many of us in the U.S. consider the IOM process sponsored by HHS as wrongful. There is the fact that there is no precedence for this. The IOM might be prestigious for advising its sponsors but it i has no power. All they can do is produce reports as recommendation.

HHS should have never sponsored them. It was a big mistake. Will HHS now hijack any disease criteria that they wish to re-create via the IOM?

The IOM has never done this before and it should be stopped. If we accept this process, and it becomes legitimate, the government will have too much power over what in this country should be a private medical process.

In addition, they did this in complete opposition of the community. Government shouldn't have the power to do that. This is a new policy from them and it should be stopped at its infancy.

This is the reason why I cannot agree with quoting from this report. It has nothing to do with what simeine claimed that some people can never compromise. Anyone who knows me, will tell you the opposite.

I do feel very strongly about this issue though and I think that we have started a dangerous course. HHS should not forcefully exert control over defining disease.

Our expert medical association; the IACFS/ME officially adopted the CCC and issued their primer. It is being successfully used worldwide. Fifty worldwide experts in the disease had officially adopted via consensus the CCC.

HHS had no right to do what they did and just because they defiantly followed through, we don't have to go along with it.

It is a huge compromise for me not to insist that we make a statement in the petition stating that we fully oppose the IOM process. By agreeing not to mention the IOM report is a compromise for me.

As far as how many goals we choose to demand,I would have preferred just one because I feel that this would have a greater impact but, I can compromise in that. I would prefer not more than three.

I agree with the figure of 250 million which The SMCI mentioned yesterday and another independent person confirmed to me as well.

We can use the charts provided by NIH showing us at the rock bottom of the funding chart. We can compare it to the figures of the burden of our disease and the great patient population.

There are many other powerful quotes that we can use in support of our goals. For example when asking for care of severe patients we can quote Klimas stating that we are more severe than her AIDS patients.

We can be very powerful without quoting the IOM report.

 

[alex3619]

I think the disastrous HHS-IOM process needs to be addressed, but its a major advocacy issue in its own right. Its not just about them defining diseases (which I think is the right of government, but maybe not wise).

In under five years we may be facing this or a similar process again. We need to influence this to be as rational as possible. That means we cannot be ignored as stakeholders. We run a huge risk if we don't, as report after report (presuming no great advance in biomarkers) might eventually result in a report calling ME "Multisymptom Illness" which is one step from somatization. Guess which report may be widely accepted in government if there are extended fishing expeditions?

This is not the same issue as how to address major advocacy goals right now in these circumstances.

Again, mixed agendas. Disagreement nearly always follows from mixed agendas. Separation of demands and supporting materials also changes a petition. We can cite the reports in supporting materials, and not cite them in the petition itself. Would anyone have a problem with that? You do not have to agree with the supporting material to sign the petition.

 

[Sasha]

Many of us in the U.S. consider the IOM process sponsored by HHS as illegitimate.

I respect that view but I don't see that saying 'the IOM report, commissioned by the NIH/HHS/AHRQ/etc. states that ME/CFS is a devasting organic disease that is clearly not psychological in origin and is extremely underfunded' does anything to support the other statements in the report or to imply approval of the process by which it was created. The focus of our demands will be the demands; the statement about the IOM report would be used to add weight to that, not the other way around.

We can use the charts provided by NIH showing us at the rock bottom of the funding chart. We can compare it the figures of the burden of our disease and the great patient population.

There are many other powerful quotes that we can use in support of our goals. For example when asking for care if severe patients we can quote Klimas stating that we are more severe than her AIDS patients.

We can be very powerful without quoting the IOM report.

Again, I've got to respectfully disagree. One clincian's statement, or any number of quotes from individuals, won't carry anything like the weight of an expert report from the prestigious IOM that was was funded by all those health agencies. Yes, we can show the NIH chart but we need a powerful statement from a government-commissioned body that shows that this is an organic, non-psychological disease and shows that a prestigious institution, not just us, thinks we're worthy of funding. And that's the IOM report.

Sorry to keep butting heads with you over this, @Nielk, but I think this is an important issue.

But I also think it's an issue for further down the line. We need to agree on our demands first (if that's what we're agreed on - I'm slightly confused about where we're at with goals/demands).

 

[alex3619]

I agree with the figure of 250 million which The SMCI mentioned yesterday and another independent person confirmed to me as well.

I would love to see the analysis. I think this figure is likely to be flawed though if my limited understanding of what was done is right. Yet I cannot comment without seeing the figures. I could probably make an argument that this amount is too small.

Just to be clear, my best guess is asking for something like ringfenced $50 million a year, incremented by an additional $50 million to be added to that figure every year, and for at least five years, and then holding, might be a better way to go. This money would be in addition to moneys spent to establish centers of excellence, but would be included in costs for individual studies.

 

[Sasha]

We can cite the reports in supporting materials, and not cite them in the petition itself. Would anyone have a problem with that? You do not have to agree with the supporting material to sign the petition.

I don't think so. Most patients (and most people) are not going to read a lot of supporting documentation. If the IOM report isn't mentioned in the petition itself, I think it would be considerably weakened.

Burying our big weapon in an appendix isn't the way to go, in my opinion.

But again, are we getting bogged down in this too early?

 

[Sasha]

I would love to see the analysis. I think this figure is likely to be flawed though if my limited understanding of what was done is right. Yet I cannot comment without seeing the figures. I could probably make an argument that this amount is too small.

Just to be clear, my best guess is asking for something like ringfenced $50 million a year, incremented by an additional $50 million to be added to that figure every year, and for at least five years, and then holding, might be a better way to go. This money would be in addition to moneys spent to establish centers of excellence, but would be included in costs for individual studies.

I think we could easily get bogged down in the question of exactly how much to ask for and find it hard to reach agreement. If an advocacy effort is growing around a figure of $250m, it's probably best to get behind that. I can't see that if we make specific recommendations about how to grow a budget by specific annual amounts that it would be adopted. We don't have that level of control.

I'd favour a big, simple ask.

 

[Kati]

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.

I disagree on the wording. It is too wide and subject for interpretation. Is it prioritized from most important to least important? The most important in my view is more funding.

Example of imprecise wording: we need better care for all patients. From HHS's point of view, better care may just need posting a toolkit on their website, and forcing doctors to read it. What do we mean by better care? What exactly are we asking?

Secondly more research funding. HHS may be feeling that this goal has been achieved if they fund 10 millions of research. Ugh.

We need measurable goals.