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

[oceiv]

On the OWH, I don't know the history to that extent, @Valentijn Since you're from a non-U.S. country. What do you prefer between our action only targeting only the U.S. congress or targeting both congress and other countries' political bodies simultaneously?

 

[Valentijn]

On the OWH, I don't the history to that extent, @Valentijn Since you're from a non-U.S. country. What do you prefer between our action only targeting only the U.S. congress or targeting both congress and other countries' political bodies simultaneously?

I'm American, living in the Netherlands.

I think it's the HHS who we want to act, but they won't act if they can avoid it without looking like a bunch of incompetent morons. So I think the petition should be superficially addressed to the HHS, but congress should be our real intended audience. Or something

I don't think we should worry about other countries currently. Partially because it would excessively complicate things to the point where the project would likely fail to get off the ground entirely. And partially because where the US goes, regarding medicine and research, the rest of the world usually follows.

 

[alex3619]

I don't think we should worry about other countries currently.

The biggest issue internationally is very very different. ME is almost totally ignored by almost all countries. Its a small handful of countries that are doing anything. Advocates are struggling all over the world.

Yet Spain and Norway demonstrate that countries that have not done much can turn around and contribute a lot. We need more countries doing that. This is however outside the scope of any US government action, so we have no cause to discuss it. Unless, of course, at a later date we might consider (and this is years too premature) what the US can do to foster a concerted international effort.

 

[Sean]

I also think that @Sean 's idea of different specialists would work, if patients could access them all in one place.

Clinicians from different specialties and backgrounds, coming together under one roof (more or less), sounds good to me.

If a specific speciality emerges organically from out of that situation, I am okay with it. But probably not best to try to create one artificially from scratch now.

ME/CFS has it's unique features, that must be factored in. But like most diseases, a lot of the symptoms and problems we have to deal with have a large generic component and are not specific to our disease. Stuff like exhaustion, pain, problems with movement, sleep, cognition, hemodynamics, secondary infections, etc. A decent chunk of all that should be amenable to existing established therapies used in other diseases, perhaps with a bit of modification and adaption. Plus all serious diseases commonly feature a whole bunch of less medical but still serious secondary complications like reduced income, social isolation, etc.

All that kind of stuff can start being at least partly addressed without waiting for any more major research findings. Society doesn't come to this with no prior medical scientific and general understanding. We already have some good possible options on the table. What is missing is an attitudinal change by governments and medical authorities. The possibilities and resources are there, if they wish to spend them on us.

And I wish to encourage them to do so.

Sorry for bringing up an old topic. I am still 6 pages behind...

Just 6? You're doing well.

And partially because where the US goes, regarding medicine and research, the rest of the world usually follows.

Yep. Which is why this whole IOM & P2P & AHQR show is so important. Not just our USA friends who will be affected by it.

 

[oceiv]

OK. Your answer helps a lot. I did not know that you're American. Do others agree with @Valentijn ?

So, @alex3619 you're also saying the target is the U.S.?. Congress?

Just 6? You're doing well.

I have no idea in which country you reside. Is yours another vote for targeting only the U.S.?

I'm going to take a break. Please keep the conversation going. Here are my posts on the politics situation, since the thread moved so fast.

First parts of this post and this post are two of my U.S. politics and targets comments.

 

[alex3619]

Clinicians from different specialties and backgrounds, coming together under one roof (more or less), sounds good to me.

I think this can work but the framework under which it is done is a huge issue. Most of the fatigue clinics in the UK kind of do this, but I would not be happy going to one.

This is kind of what a center of excellence is. You can create such a center with research, clinical and teaching roles. For one thing you attach it to a medical school.

Yet the issue remains how do you find these doctors? What has happened in Canada is that most doctors don't want to know, nobody applies, and you have what is largely a non service that is highly dependent on a small number of dedicated doctors. Attitudes have to change first, which means education, and better education requires more research.

Every time I have seen attempts to do this I have seen it either fail or muddle along. I am not sure we are there yet. We should have been there twenty years ago, but we aren't even today.

Multiple specialties have consistently rejected ME. They still do. Until that changes the option for a specialty is on hold. Until general attitudes change the option for a multidisciplinary clinic is problematic.

Now the kind of research that might lead to this being feasible has been demonstrated at Stanford. They deliberately brought together experts from many fields of medicine to do their kinds of analyses. That kind of collaboration in research might lead to a multidisciplinary clinic in time.

Most of these kinds of things cannot easily be coerced top down in my opinion. We need doctors and researchers to push for them, and when that happens we should get behind them.

 

[alex3619]

Given that Lipkin, and King, both suggest we approach Congress, and given that the HHS, NIH and Congress are the only three options we have been given so far, and that HHS has a long history of ignoring us while Congress has listened occasionally (but not reliably) should Congress be our target audience?

Do we want a broad public appeal, or do we want to focus on patient advocacy only?

Once those two are answered we can scope this better.

 

[oceiv]

Given that Lipkin, and King, both suggest we approach Congress, and given that the HHS, NIH and Congress are the only three options we have been given so far, and that HHS has a long history of ignoring us while Congress has listened occasionally (but not reliably) should Congress be our target audience?

Do we want a broad public appeal, or do we want to focus on patient advocacy only?

Once those two are answered we can scope this better.

So that seems to be two votes for targeting congress and 1 vote for congress/HHS

I think we want patients and non-patients to sign, as we won't have enough signatories, otherwise.

I need help to keep this vote on who we target and vote count going when I'm not here. Are there thread participants who can help today, this week and/or in the future? We need all the task managers we can get on this action. Today, we need all the task managers and thread participants we can get to get this target subject resolved. In the future, we still need all of the all the task managers and thread participants to help with this action moving forward. I know that my time-limits are a challenge. But as I have said all along, for this effort to move forward, it needs to be dependent on a group of committed people. Every person has their health limitations and I also have to give time to my situation. We all can share the load and contribute when we are able.

But even if you can't do the above, your participation in these votes and discussion is important. Please keep voting while I'm not here. Current task: vote on target of our action. Determine the target from the votes.

Goodnight.

 

[Sasha]

International action

I don't think we should worry about other countries currently. Partially because it would excessively complicate things to the point where the project would likely fail to get off the ground entirely. And partially because where the US goes, regarding medicine and research, the rest of the world usually follows.

I agree - a petition designed for the US will have different targets and call for issues to be resolved in different ways in other countries, and will demand different supporting documentation. I think we'd need a project manager for each country who was willing to build a team, do the work in drawing up a well-researched petition and lead the action in their own country. I think that's too much for us here and would take energy away from the US project.

So I vote 'no' to trying to create simultaneous actions for other countries - but patients and supporters internationally should support the US action.

It's important that we let oceiv guide us in our tasks and decisions now so that we can make progress and her topic for today is:

Current task: vote on target of our action. Determine the target from the votes.

I don't know enough about how the US works to know who the target of the action should be, but on this thread we've discussed whether different demands need different targets. But with a multi-demand list (which is what we're discussing), presumably it could read something like, 'We want Agency A to do X and Agency B to do Y' and so on.

Perhaps the list should be targeted to congress and the list also sent to the relevant agencies, pointing out to them which demand is relevant to them to action.

That's sort of my vote, in my ignorance: if we're having a multi-goal list, specify the target agencies in the list, send the list to Congress, also copy the list to the relevant agencies, flagging up what's for them to action.

I won't be around much today, if at all - I hope there are people here who can keep this on topic on this vote as oceiv has asked.

 

[alex3619]

In case it isn't clear, I vote Congress, but the HHS and NIH have some viability too from my perspective.

 

[alex3619]

If we want a broadly based petition, then I suggest we have one central goal, either parity, or research (or research parity), and tie the other goals to it.

Nothing stops us sending copies to various other organizations.

I think this is about the US. Other countries are for later.

 

[aimossy]

Personally, I think it is all getting too complex through varying view points and lots of different angles going on/views and new areas of thought. Although lots of information and views that are useful have been aired on this thread. I think it initially needs to stay on task with finding agreed needs/goals that many would support. That also requires people to tow the line and be constructive with what Oceiv asks for, input wise. In some ways I think that the goals may be clear now and could be written up and have people say if they would support these or not generally.

I feel that on a practical level when you have found those, then you can decide on what actions to do based on them.
Whether it is a petition based on one or all of these goals or letters to certain important factions/ people. Or one then the other. The point is that depending on what you decide, action wise, will dictate whether these need elaborated on. The target also needs to be identified after the needs are identified. Could be congress or HHS and NIH depending on the context.

 

[Valentijn]

In case it isn't clear, I vote Congress, but the HHS and NIH have some viability too from my perspective.

For the sake of clarity, NIH is a part of HHS. CDC is also part of HHS.

 

[aimossy]

hahahaha made me laugh @Valentijn !!

 

[Valentijn]

Personally, I think it is all getting too complex through varying view points and lots of different angles going on/views and new areas of thought.

Actually I think we're at the stage where things are starting to get simpler: audience and basic goals are being narrowed down and decided upon. Once we have something resembling a consensus for that, we can focus on the details of implementation.

My understanding is that this project would be in the form of a petition, with no more than a few closely related goals revolving around research and perhaps education, and with HHS and/or congress as the targets.

 

[Valentijn]

hahahaha made me laugh @Valentijn !!

 

[Sasha]

The target also needs to be identified after the needs are identified. Could be congress or HHS and NIH depending on the context.

I think we've gone round in circles a bit on whether we should decide demands first and targets later and I see oceiv's request to vote on targets as a way to break us out of that circle.

Do you think we can decide on specific agencies for each demand later, but agree that the whole list should go to Congress because Congress has the power to influence all the agencies? Is that how this works in the US? US people, what are your views and votes?

I just don't know what the hierarchy of power is in the US and how all these agencies relate.

 

[alex3619]

For the sake of clarity, NIH is a part of HHS. CDC is also part of HHS.

Yes, but they have different management structures, and HHS is also about disability benefits etc. unless I am mistaken. Which is partly why I prefer HHS to NIH, as its the highest organization in all this.

 

[Sasha]

For the sake of clarity, NIH is a part of HHS. CDC is also part of HHS.

My understanding is that this project would be in the form of a petition, with no more than a few closely related goals revolving around research and perhaps education, and with HHS and/or congress as the targets.

So if HHS oversees NIH and CDC (both probably the targets of specific demands) then I agree that Congress and/or the HHS should be targets for the multi-demand petition.

Edit: actually, both - target Congress to pressure HHS, and target HHS to pressure the agencies beneath it in the hierarchy.

 

[WillowJ]

Organizational structure:
http://www.hhs.gov/about/orgchart/index.html

(for now)