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

Sasha

Fine, thank you
Messages
17,863
Location
UK
Just been watching Solve's advocacy event yesterday and I thought their three advocacy targets were good. They were:

1. More funding ($250k)

2. Removing institutional/structural barriers to research, so a more appropriate research home than the Office of Research into Women's Health (e.g. NAIAD, which covers immunology, or NAIDS, which covers neurology).

3. Better education for doctors so that patients can get care.

Carol Head lists these goals starting roughly around the 37 minute mark (there's a bit more detail than I've given but I don't have time to transcribe what she said:


If there's a moving bandwagon there, I think we should help push it/help it push us by sharing goals that we agree with.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
The problem of following thie SMCI lead is it will alienate the anti CAA factions, and also the anti IOM factions. Its not a unifying goal. That does not mean its necessary a bad goal, only that its problematic.

I will watch the video though. I was hoping it would be posted soon. If the points are strong we can use it.

I am also unclear as to the 250 million. Is that per year, or lump sum? Maybe the video makes it clear.
 

Kati

Patient in training
Messages
5,497
The problem of following thie SMCI lead is it will alienate the anti CAA factions, and also the anti IOM factions. Its not a unifying goal. That does not mean its necessary a bad goal, only that its problematic.

I will watch the video though. I was hoping it would be posted soon. If the points are strong we can use it.

I am also unclear as to the 250 million. Is that per year, or lump sum? Maybe the video makes it clear.
It is yearly funding. The graphic that they have posted is a yearly funding.

image.jpg
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
The problem of following thie SMCI lead is it will alienate the anti CAA factions, and also the anti IOM factions. Its not a unifying goal. That does not mean its necessary a bad goal, only that its problematic.

I will watch the video though. I was hoping it would be posted soon. If the points are strong we can use it.

I am also unclear as to the 250 million. Is that per year, or lump sum? Maybe the video makes it clear.

I'm suggesting that we also adopt those three goals. I think we've already got two of them (funding and education) and the other (get out of Women's Health) is a no-brainer.

I also think we should go for the same figure ($250m/year). If one group is asking for $250m, another for $50m and so on, it will weaken our advocacy.

I don't care where the goals come from. If we're trying to accommodate people who put opposition to Solve so high in their priorities that they won't support a widespread call for $250m/year and to move out of Women's Health if we also have those goals, we might as well pack up and go home.
 

Kati

Patient in training
Messages
5,497
I'm suggesting that we also adopt those three goals. I think we've already got two of them (funding and education) and the other (get out of Women's Health) is a no-brainer.

I also think we should go for the same figure ($250m/year). If one group is asking for $250m, another for $50m and so on, it will weaken our advocacy.

I don't care where the goals come from. If we're trying to accommodate people who put opposition to Solve so high in their priorities that they won't support a widespread call for $250m/year and to move out of Women's Health if we also have those goals, we might as well pack up and go home.
What @Sasha said.
 

Nielk

Senior Member
Messages
6,970
It is clear that the IOM promoters have hijacked this thread as well. The title clearly says "regardless of their IOM view".
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
It is clear that the IOM promoters have hijacked this thread as well. The title clearly says "regardless of their IOM view".

The full title of this thread is 'What common goals can everyone work towards, regardless of their view of the IOM report?'

That doesn't mean that we shouldn't consider using the IOM report to support our common goals.

One can disapprove of the IOM criteria, name and process and still want to use the prestige of the report and its conclusions about the devastating nature of the disease, its non-psychological nature and its severe underfunding, in support of the common goals that we choose.

I understand that you don't want to, but many others might.
 

Kati

Patient in training
Messages
5,497
It is clear that the IOM promoters have hijacked this thread as well. The title clearly says "regardless of their IOM view".
Sorry @Nielk, what kind of tactic is that? You are accusing and trying to shame people?
personally i tell my opinion. I don't judge according to who says something, I judge according to content. CAA has done a fine job yesterday and while I may not agree with everything they do, they have to be congratulated for what they did yesterday.

Here on this thread, I like posts which represent what I agree with.

Your post #207 is totally out of line. You have run out of arguments so you have started a more agressive tactic.

Not flying with me. (No pun intended :-( )
 

Snowdrop

Rebel without a biscuit
Messages
2,933
It is clear that the IOM promoters have hijacked this thread as well. The title clearly says "regardless of their IOM view".

While you may have a point about the title of the thread as related to the post it really doesn't seem to amount to much of a response in terms of why not move forward in this way. I'm wading in deep here as I have a great deal of cognitive trouble remembering and following these discussions. I also am still having difficulty understanding why the IoM and the CAA represent such a problem.

Valentijn somewhere made a point about using the IoM report because that is what the target audience will understand and accept.
This does make sense to me. I'm still not understanding the down side to this ie why I should shun the use of the IoM report or care about the misdeeds of the CAA in the past. I feel there are some very good questions unanswered by those who can't support the use of the report in advocacy efforts.

The past can be a very good indicator of how someone or some group will think in the present right up until it doesn't.
I like beakers signature: "When the bird and the book disagree always believe the bird".

So far the book has been telling us from all our past encounters not to trust certain people/groups. . .
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
This has been a very productive and positive thread in general and I'd like to make a plea: if you see a post you think is out of order (including any of mine), hit the report button so that the mods can deal with it.

Let's not have poor oceiv wake up tomorrow morning and find we've managed to get this thread locked.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
One can disapprove of the IOM criteria, name and process and still want to use the prestige of the report and its conclusions about the devastating nature of the disease, its non-psychological nature and its severe underfunding, in support of the common goals that we choose.
This is my position. I disapprove of the process, and in particular the partisan alteration of goals and agendas, and non-participation of patients, and on dogmatic acceptance of EBM even when it is not appropriate. This does not mean I think we have to avoid good ideas because of association with organizations I don't like or trust. It does mean that in a thread about creating goals we can all agree on there may be issues we cannot resolve.

These issues, as I have said before, are not about broad goals. I think we agree on broad goals. What we disagree on is how to get to those broad goals. Its about methods. So long as goals and methods are confused, or goals and process if you will, then we are going to fail to reach agreement in my view.

I do think we need a broad manifesto. I do think we need to realize people will only sign up for some advocacy projects and not others, and that is not a reflection of the intelligence, competence or integrity of anyone.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I do think we need a broad manifesto. I do think we need to realize people will only sign up for some advocacy projects and not others, and that is not a reflection of the intelligence, competence or integrity of anyone.

Are you thinking of the people on this thread as long-term members of a group that will hold together over time doing lots of different advocacy actions and that will therefore need a manifesto?

Because I have thought of us as a kind of testbed for specific demands, to see if those demands could get broad support. I don't see us as a group going forward, just a group who are thrashing out a one-off list of demands.

I don't know which of us is right, Alex! But I think we need to clear this up so that we aren't confused going forwards.
 

Nielk

Senior Member
Messages
6,970
The full title of this thread is 'What common goals can everyone work towards, regardless of their view of the IOM report?'

That doesn't mean that we shouldn't consider using the IOM report to support our common goals.

One can disapprove of the IOM criteria, name and process and still want to use the prestige of the report and its conclusions about the devastating nature of the disease, its non-psychological nature and its severe underfunding, in support of the common goals that we choose.

I understand that you don't want to, but many others might.

This is dismissive of my opinion.
 

SOC

Senior Member
Messages
7,849
Lots of great thoughts on this thread, but one thing stands out to me -- we need to get people with professional advocacy experience involved. We really don't know what we're doing. We don't know how to best address our prospective audience. We don't know how to select and organize our objectives. We don't know how to use the tools we have -- good, bad, and indifferent. We don't know how to handle the people who are unwilling to compromise at all. I see a fair amount of talking at cross-purposes. We have interest, ideas, common sense, but no expertise.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
A specific response to a specific issue is one thing, but so far nobody has stated what that task is in any comprehensive fashion. So we are muddling along.

In terms of getting common goals, and unifying advocacy, I think some kind of manifesto is important. That does not mean I think it should be the goal of this thread.

Most of the advocates and impassioned patients who are just getting interested in advocacy may have very different ideas about what to do, and what not to do. As a unifying factor I think we need to be very clear that while our methods and concerns may vary, our overwhelming core goals are the same. We want better medical treatment. We want better research. We want better attitudes in society, which flows into treating us better. The rest is about how to get there, and I am not sure we are ready to be unified on that.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Are you thinking of the people on this thread as long-term members of a group that will hold together over time doing lots of different advocacy actions and that will therefore need a manifesto?
No. The name of this thread though is about common goals. We are still trying to articulate what those even are. If advocacy, in the broad sense, is ever to operate effectively I think we need to agree on some basics. A manifesto is about giving a basis to the things we all agree on, and making that explicit. Sometimes this gets lost in all the argument and conflicting agendas.

Because I have thought of us as a kind of testbed for specific demands, to see if those demands could get broad support. I don't see us as a group going forward, just a group who are thrashing out a one-off list of demands.

From the beginning I never saw that, and indeed this thread was created by removing some posts from a thread with a specific focus. The focus of this thread was about goals, not actions. Indeed some of those goals which people have agreed with in general are not easily actionable.

It would be nice if someone wanted a specific action the thread started with clear discussion of what that action was. Goals that are action specific are different from creating goals that are generally acceptable.

I don't know which of us is right, Alex! But I think we need to clear this up so that we aren't confused going forwards.

I think we need a new thread to discuss almost anything, one thread per task. I think this thread is confusing enough that its inevitable people will get lost in it. If I can find my old threads on goals in advocacy, which should be here somewhere but going back several years, that will give us a place to start on the manifesto idea in a new thread. I think that a thread on specific action regarding NIH should be started, with respect to specific requests, and to scope and delineate those requests. I think that actions regarding other organizations and bodies need to be considered in this, including the Office of Women's Health.

Let me add the video from SMCI was very good, with some very compelling argument, and it would be a mistake to dismiss it out of hand. I think we are in danger of falling into the fallacy, and forgive me for taking some liberty here, of arguing the organization rather than the argument. Its a variation of an ad hominem argument.

I have been very critical of failures in rational argument in various organizations and by various researchers. I have generally refrained from making such arguments with respect to advocacy, largely because way too many of us are way too sick. In terms of serious discussions about advocacy, however, its important to realize we are just as guilty of irrational thinking at times as anyone we are arguing against. That includes me.
 

oceiv

Senior Member
Messages
259
Respectfully, @alex3619 you are either missing, misunderstanding or ignoring my posts. Posts, both from last night and starting from the very first page of this thread. We had always been talking about a letter/petition/one action with multiple goals. A short-term action. I also restated last night, that this was what we were talking about after @Sasha asked. One action (this was the overarching thread goal, not just a method) with multiple common goals for what we want from our governments was what we all discussed at every stage. There are different kinds of goals, as I stated last night. Overarching ("our goal is to create a letter," for example) Specific ("Our common goals will be included in the letter," for a second example) and others. Lastly, when it was brought up that we could do one goal at a time, that was a change. I suggested a compromise last night and people did start stating their preferences for compromise. I asked you for compromises. I did not see an answer. I may not be clear on what you're saying, but from what I quickly read again today, you are still saying that we will work separately on each goal or what you're terming "method." We may disagree, but I must insist that the hearing needs to go both ways. That is a minimum standard I asked for in this thread. Whether you are calling the action a "method"" or a "goal," the effect is the same and I plainly stated that we must all be willing to compromise on the one-goal vs. multiple goals disagreement. This disagreement cannot keep derailing our progress forward and our discussion.

A respectful conversation is one in which people are hearing each other. I laid out a request for respectful discussion in several posts on the first page of this thread.

Please if you haven't, read the posts I linked to last night. The links were in this post.

One correction from my last post. I had added a note at the very top of the first post of this thread. I did that on the very first day of the thread. The note linked to my intro.

Also, in both my first post and my intro post, I talked about how do we act together despite our disagreement about the IOM. The IOM, our disagreements about it and how we work together despite our disagreements was always the context. On other posts I spoke about the urgency of the moment. Many of us did. When we did, It was always clear that the moment was post-IOM.

I am addressing this issue first because it's about thread purpose. Without that purpose, the conversation will continue to have derails, etc.

I can't comment on the other issues, right now. I'm am still fixing my urgent patient care situation. More later.
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
@oceiv, nowhere in any of your links is a clear statement of task. You may have an idea of what you want, but its not articulated. Its talked around, and referred to vaguely. I just reread all the links. I am not missing or ignoring your posts but I do not doubt there is some misunderstanding. On both sides.

If anyone thinks I am insisting on a single goal, I suggest you reread everything I wrote.

I cannot offer compromise on a poorly articulated point. It has to be clarified. At the moment its very confused, with different levels, goals, agendas and arguments all muddled together. I am trying to clarify and disambiguate all that. This is especially the case with a false dichotomy, as I have explained. I do not agree with either of two points, and disagree that there are only two points, as in one goal versus many.

The very question is flawed. Until its disambiguated I cannot make any determination on where I stand.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
We had always been talking about a letter/petition/one action with multiple goals.
Which has not been defined, and not been properly articulated. I have also answered this point repeatedly, in several different ways. Which is why I suggested a new thread, with a clearly articulated task. The goal list here is not consistent with the claimed task. The issues on how to deal with it are not consisted with wanting a fast effective response. It can be fast, or effective, but to do both is not a simple thing. It will require much more than I think most are willing to realize.