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

eafw

Senior Member
Messages
936
Location
UK
how do we get people who dislike SEID and the IOM recommendations on board in advocacy that uses the IOM report to call for more funding?

We don't need everyone on board. It's OK if some people are uncertain about things and not everyone has to join in with every advocacy effort. There's certainly room for more than one approach or campaign.

What can be real a problem is when, instead of letting others get on with their thing, you get people who are actively trying to disrupt or sabotage. That, to me, is unacceptable, and unfortunately those are the very people who can't be reached by reason.

For those who are just undecideds or currently not as informed as they'd like there is a very good case to be made for using the IOM to move us forward, and that is a case based on what is in the report, the way it has been presented, the follow up interviews, the reality of how progress on these things can be made and so on. Hopefully some of those people will be able to look at the practicalities, listen to those who have experience of advocacy work and recognise this is a massive chance we have here for good progress.

I recommend the video presentation (which has flashing lights, but it makes sense audio only) for people who wish to find out a bit more and consider how useful the IOM report could be.

http://forums.phoenixrising.me/inde...-washington-d-c-webcast-march-25.36224/page-3
 

medfeb

Senior Member
Messages
491
I understand your points about the polarization of the IOM discussion, Sasha.

Maybe the question is what is the objective of this thread as originally set up and/or as it stands now.

If the objective is to define a list of the goals that we all support, then I'd think one of the goals is dramatically improved medical education and to do that, we need to have clearly defined, validated criteria that can be used reliably and good medical education. For the U.S., evaluating/validating the SEID criteria before rollout is a must. Another goal, at least in the U.S., is to fix the broken engagement model.

On the other hand, if the objective is to focus specifically on the need for more research and drive actions specifically focused on getting research going, including funding, strategy, appropriate case definition, etc, that's something different.

But if the objective is focused specifically on getting research going, the action shouldn't - and doesn't need to - imply a blanket acceptance of everything in the IOM report. I also don't think the action should include everything except those concerns that are perceived to be 'anti-IOM'. We need to be breaking these issues apart and assessing them separately so that we can take more nuanced and appropriate actions toward the different key findings in the report in order to move the field forward.

These are not anti-IOM or a pro-IOM issues. I think we hobble our own efforts if legitimate concerns are not allowed to be spoken/included out of a fear that it might perceive it as "anti-IOM." And I worry that not acknowledging these legitimate concerns is contributing to the polarization
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I understand your points about the polarization of the IOM discussion, Sasha.

Maybe the question is what is the objective of this thread as originally set up and/or as it stands now.

Honestly, I don't think we know - or know how to agree on what our objectives are, at this point. People are taking a lot of different approaches to that question.

But if the objective is focused specifically on getting research going, the action shouldn't - and doesn't need to - imply a blanket acceptance of everything in the IOM report.

I agree.

I also don't think the action should include everything except those concerns that are perceived to be 'anti-IOM'. We need to be breaking these issues apart and assessing them separately so that we can take more nuanced and appropriate actions toward the different key findings in the report in order to move the field forward.

If we're talking about a list of demands to be presented as a single petition, I don't think that we can break them apart. I also think that nuance will be lost if we're asking people to sign up to such a list (supporters that we want to sign the petition, for example).

These are not anti-IOM or a pro-IOM issues. I think we hobble our own efforts if legitimate concerns are not allowed to be spoken/included out of a fear that it might perceive it as "anti-IOM." And I worry that not acknowledging these legitimate concerns is contributing to the polarization

My concern is to maximise the numbers who sign the petition. I see a tension here between including IOM-specific recommendations and maximising our numbers

I think that extremely few people would be put off signing a petition because it lacks an item they want, among many that they do. But I think that many could easily be put off by seeing one that they're not sure about.
 

oceiv

Senior Member
Messages
259
Checking in. Thank you to @Sasha for all of your thread guidance.

I like @Kati's specific wording on patient access.

Good discussion today. I'll return later.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
As to a petition, I wonder if we can't both have our cake and eat it too. Let me explain.

The key factor to the goals, the common link, is we want better research. With that as our point, we can then go on to provide supporting material. Some of that would be the benefits that arise. Such as better information to educate doctors about. Or validation of existing research for which there is doubt (you don't have to mention SEID specifically, as this covers other issues plus SEID). To achieve such research requires more funding, dedicated research teams, stakeholder participation .... etc., etc., etc. All the goals are mentioned, but as secondary to a single unifying theme.
 

SOC

Senior Member
Messages
7,849
Sorry if I missed this point earlier in the thread -- What specific organization is this petition going to?

The petition should only ask for things that organization can achieve. Asking an organization to do something that is not within its purview, or complaining about something it has not control over, is useless and makes us look disorganized and unintelligent -- not the message we want to send.

Also, the more I think about the question of better local medical care, the more I wonder if it's a petition-type request. We might need a different advocacy approach for that one. There is NO question that we need it, but it's not something any government organization I can think of can legislate. We can't just say, "Make our GPs treat us better." There needs to be clear actionable requests/demands. Opening good COE's would be a start, but that has the same problem we currently have -- the vast majority of us won't be near one for many years. What treatments would we expect them to offer that aren't available from our GPs now? Wouldn't the COEs be just as hamstrung by the CDC recommendations? So do we need to go after the CDC's (or whoever's) treatment recommendations first?

Better education of doctors about the illness is critical to better treatment, but it will take years for that to trickle down to effective local treatment. We might be able to change some doctors' attitudes with a major public relations campaign, but that won't get us better treatment modalities until we have better research to back up those modalities. And who controls doctor education? We have to petition the right organization to make that happen. No point in asking the butcher to fix our furnace.

For a petition we need a lazer-focused demand for action. It needs to be obvious exactly what we want in the first paragraph if we want people to read it and sign or act on it. Any ambiguity shuts down interest. This doesn't mean we shouldn't have multiple lazer-focused demands, just that each one needs to stand on it's own, with it's own clear call for action and supporting reasoning.

A manifesto is a different matter, it can give the bigger picture and outline multiple branches of need. From a manifesto can come many and varied advocacy efforts depending on the most effective way to address each particular need.
 

Sean

Senior Member
Messages
7,378
Apologies if this point has already been made, I don't have time right now to read the whole thread:

Another axis we need to consider is sustained versus one-off funding.

For example, an increase in research funding has to be on a sustained basis. But a major, profession wide, education program for doctors (already in clinical practice), only seems worthwhile as a one-off project, with little benefit from being repeated.
 

oceiv

Senior Member
Messages
259
We had been discussing directing this action towards congress. Congress has the power to fix our patient access/discrimination problem, Congress passed the Americans with Disabilities act. They have amended it many times to include many specific disabilities and diseases, including AIDS, HIV, mobility disabilities and many more. If there was bipartisan will, this would be the quickest, most effective and least-taxing for patients' way to get this problem fixed. It would also be the most comprehensive way to fix it, as separate court cases only apply to specific scenarios.

Beyond that, most ME/CFS patients have neither the money, time nor physical ability to wage a court battle. I doubt any one patient would be able to get a judgment for years and years. If congress had the will to fix it, it could go into effect in a timely manner,

I'm concerned that one of the reasons our community petitions and advocacy actions don't get more than a few thousand signatories is that for example, research is not everyone's most-pressing need or goal. Each petition focuses on only one thing. There is a reason one-issue, world-wide political parties don't often win. Coalitions exist for good reasons. It's not easy for our friends and family who don't really understand why the research issue so affects us. In this thread alone, we had three different top goals. Why wouldn't we want to get those people to sign, too? I think my family and friends would be more likely to sign a letter with some goals that are easily understood without explanation. This is why @aimossy 's post was so valuable. Also, @Kati 's patient-acess phrasing was succinct, easily-understood and specific. I wouldn't have to take the time and energy to explain and summarize the issue, as I had to do with the Ampligen petition. We have to be inclusive both of our top community issues and of how potential signatories who know nothing will get motivated to sign our letter.

We had the discussion about the manifesto issue and decided on a compromise that we would reduce our goals. We were going forward with that compromise. We had about 7 goals - they were in bullet-point form and got agreement from a bunch of people. Now we are talking about 3-4 goals. The rest of our initial points were internal matters to let each other know we're hearing each other and can work together despite differences. I think this compromise is reasonable, it seems to have support here and I think we should go forward with this compromise as we had been.

I'm also concerned that seeing that this my most-important goal and deal-breaker, that I'm putting time in and suggesting compromises, but something that we all agree should change isn't going to get changed due to a process disagreement. IMO, these process disagreements can be resolved and are less important than what is at stake, if we don't act. We could be fighting for what we need from our governments. If we compromised today, we could move on to the wording of our letter and our hard-earned discussions would be realized. We would have tangible progress towards getting this action done.

If the overarching theme of our letter is that we want government treatment equal to what other similarly-disabling diseases get, all the goals would fit the the theme. The theme is very easy for our families and friends to understand, without explanation. Research could be the first goal listed.

Edit: @Sean , that point has not been made and is important. Could you expand a bit?
There was also an important point @alex3619 made earlier and I need to go back and find it.

Back after a rest
 
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Kati

Patient in training
Messages
5,497
Apologies if this point has already been made, I don't have time right now to read the whole thread:

Another axis we need to consider is sustained versus one-off funding.

For example, an increase in research funding has to be on a sustained basis. But a major, profession wide, education program for doctors (already in clinical practice), only seems worthwhile as a one-off project, with little benefit from being repeated.

I disagree that med education is a one off project. To really hit the physician community you have to be at it often. Take the example of the British Psychiatrists... Here, there, everywhere.

Moreover, as research improves, there will be approved treatments which physicians will need priming.
 

Sean

Senior Member
Messages
7,378
Edit: @Sean , that point has not been made and is important. Could you expand a bit?
plus
I disagree that med education is a one off project.
I mean something in addition to normal ongoing professional updating (and the standard medical student course).

More a specific program for this disease to help counteract the appalling ignorance and myth that currently dominate clinical practice. You are not going to change every doctor's mind, no matter how many times they have the facts explained. No point in wasting precious resources on repeat attempts.

Anyway, it was just a possible example of what I was talking about.

Best I can do for now. But I think the basic idea is straight forward enough.
 

oceiv

Senior Member
Messages
259
I am trying to understand this one-off issue better and how it it would or wouldn't fit into our common goals. For medical education, do people think that medical education should be a short-term goal included in this action? Or are we talking about something that needs to wait until something else happens?

Nonetheless, aside from the medical eduction goal above, it seems important that we ask for "sustained research funding" in our wording.


That is why demands have to be researched and developed. As it stands they will get referred to the CDC toolkit or similar.

Can you elaborate on this point? Do you see this researching and developing as something that applies to our current action, a long-term action or both? If it applies to our current effort, can you explain how you're envisioning it fitting into a short time-frame? Maybe, give an example?
 

oceiv

Senior Member
Messages
259
What can be real a problem is when, instead of letting others get on with their thing, you get people who are actively trying to disrupt or sabotage. That, to me, is unacceptable, and unfortunately those are the very people who can't be reached by reason.

IMO, most of the people who have participated in this thread sincerely want an advocacy action to go forward. We disagree about how we get there. All of us are scared that if we do what was previously done, we will fail. But everyone also has different ideas about why past efforts failed. For me, one of the reasons efforts failed in the U.S. is that they were often targeted at the NIH. Even if certain people within the health agencies wanted to help us, they couldn't. Congress constitutionally controls the purse-strings. This is explained well in this HR article I keep referencing.

The second reason, as I see it, is that even though the U.S. is the largest funding source in the world for medical research, the efforts have not been mindful of the specific time of year congress chooses to do its emergency funding. This time of year has already started. If the sequestration cuts do not get overturned, in the next budget, NIH will continue to see its budgets decline as they have since 2013. More specifically each program within NIH has had a mandatory approximately 10% funding cut for the past two years. This also means that OWH had each of its projects cut by the same amount. OWH is where ME/CFS currently resides.

The third reason is that advocacy efforts seem to not hit all of the ME/CFS sites and social networks. It's hard for the patient to keep track or know how to send support.

Are there political problems/funding cycles/etc in other countries of which we should be mindful in our letter?

If you go down the petition route. We would need a fb and twitter campaign focused on reaching more people. You can target people with me/cfs in their news feeds through adverts.That costs money but you can do it cheaply and I would be prepared to set one up for a focused white house petition. There is over 200,000 in the US on fb that look up chronic fatigue in their web browsers. You target through interests. We could reach many people this way.

Great suggestions for upping our potential numbers.:thumbsup:

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.

Good explanations. Inclusiveness. People are likelier to sign on if they feel heard and included. As well as having participated in creating the action.

Maybe the question is what is the objective of this thread as originally set up and/or as it stands now.

The objective of this thread was to see what pro-IOM, anti-IOM and everywhere in-between community members can agree to do together. It was to see where our common ground is. It was also to step away from the polarized IOM arguments and to discuss in a different way. One of my personal questions (in the first few posts) was do the sides other than mine (undecided) care about my issues? I think other people are wondering the same thing, no matter which IOM position they take. Some previous conversations (on this and other sites) seemed to make people feel unheard and there were accusations flying in all directions. I wanted to point out that if people have different opinions on the IOM report and how to respond to it, it's because they have valid concerns, not ill-will. Also, a bunch of bullet points to establish common ground. But foremost, I wanted to see what we could accomplish all sides, together.
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Sorry if I missed this point earlier in the thread -- What specific organization is this petition going to?

The petition should only ask for things that organization can achieve. Asking an organization to do something that is not within its purview, or complaining about something it has not control over, is useless and makes us look disorganized and unintelligent -- not the message we want to send.
I have asked the same question. Indeed much of the commentary I made earlier in the thread was because there was no target audience, and no mechanism of action, so I had to operate under the assumption that it could be any of several in both cases. Different audiences and different actions lead to different analyses as to what is best.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Can you elaborate on this point? Do you see this researching and developing as something that applies to our current action, a long-term action or both? If it applies to our current effort, can you explain how you're envisioning it fitting into a short time-frame? Maybe, give an example?
Actually I have given a bunch of examples already, as well as a way to do this fast.

When we ask for something we have to ask for something doable. Asking, for example, for them to give us wings because walking is so taxing is not going to get anywhere, though it will get a few laughs.

ALL of these issues have been addressed before. They have been researched. Probably a lot of it was done by CFSAC. So we need to find the options, point by point, and get that information so that we can make pointed and informed demands.

I do agree that asking to be treated on parity with other diseases and disabilities is another good way to tie it all together.

Goals without clear mechanisms to get there are usually ignored. Politicians and bureaucrats simply wont want to know. Asking for something they know how to do, and can deliver on, has a far higher chance of creating real change.

For example, there are many ways to insure research funding, but only some have existing mechanisms. CFSAC has been specific in the past as to what it wanted. We should ask for the same kind of thing. This is why separate research groups, on their own threads, can more rapidly deal with things. One to develop the funding proposal etc. Then we recombine into a single document at the end.

I think any focus on a one off education campaign will not be good enough, just to elaborate on a point that has recently been discussed. Sure we need that, but we need to be sure that medical curricula include accurate information, that ongoing medical education courses cover ME adequately, that textbooks reflect the science and not obsolete speculation.

Otherwise we should find a position we like that is similar, and there are not many choices that are currently politically active, and push that. Sadly the only big one right now is the IOM.

So we research our own path, or follow the IOM path. I don't know of a third option that has any momentum. Now we don't have to endorse the IOM to do this, we can make similar demands and just use their momentum to advance our position. This is the only way to be fast, effective, and not have to do some investigation of options.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Are there political problems/funding cycles/etc in other countries of which we should be mindful in our letter?

I don't think so - the US, because of its budget and the way its research scenario operates and the access that citizens have to influence that via congress, is by far the most important actor in this. The rest of us should jump on that bandwagon but it's change in the US that's going to make the biggest difference to PWME worldwide.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I said earlier on this thread that I considered the inclusion of the SEID validation item a dealbreaker. I'd like to withdraw that comment because I don't think that any one of us should have a veto on anything: otherwise, we'll fail to reach agreement. 100% agreement is impossible in any group and if 100% agreement is what we need to go forward, we might end up with a petition that is so watered down that it's useless.

I don't like the SEID validation item for a number of reasons. I think it will confuse people and raise a lot of questions for them (validated against what? how do you do that? was it done for the CCC and ICC? is this a double standard? is this an attack on the IOM report? etc. etc.) and that that confusion will turn many, many people off signing the petition who would otherwise have signed it.

One could explain the rationale for it and pre-empt the objections but to do that properly is a lengthy business and most people aren't going to wade through that kind of detail, especially if this is one item among several - especially not cognitively-challenged PWME.

So, I think the SEID item will very considerably weaken any multi-item petition that includes it and I'd like us to consider that point when making their decisions about what should be on our list but I'm withdrawing my 'dealbreaker' marker.
 
Messages
15,786
One thing I would want to know more about is the Americans with Disabilities act.
It does cover medical conditions, in addition to non-illness disability. It doesn't have to be a permanent disability or illness.

I think the issue with bigoted doctors would fall under Title III, which prohibits discriminating to deny access to public and/or commercial goods, services, facilities, etc.

Title III is mostly discussed in the context of physical access, but should also apply to being deliberately excluded based upon having a general or specific disability and/or illness.
 
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oceiv

Senior Member
Messages
259
I had meant to go back after rest and add the link and will add the links there too as well as the sequestration link. Here are two:

ADA:

https://en.wikipedia.org/wiki/Americans_with_Disabilities_Act_of_1990

http://www.ada.gov/

I know basics about it, but one would probably need a lawyer who is familiar with the ADA for the best info. The diseases and disabilities covered are protected, but some diseases and disabilities not covered have fallen into a gray area. Are there comparable laws in other countries? I would assume there are some, but don't know what they are.

Sequestration:

https://en.wikipedia.org/wiki/Budget_sequestration_in_2013

There are always things I can't get to address when I post. It's not because I'm ignoring those things, but rather because of my illnesses' limitations. But you are all discussing these things when I'm not here and will contonue to do so.

Thanks for all the empathetic and insightful comments on my situation. I said this before, but we have a lot newcomers. The reason I've brought the basic situation to this thread is because for many patients world-wide, this is their situation and most-pressing need from their governments. I think many of those patients are at home and unable to post much or at all. I was in that phase, too, for too long. I was interested in @taniaaust1 's comments about this subject, but didn't get to the comment I wanted to write.
 

Gingergrrl

Senior Member
Messages
16,171
@Gingergrrl may or may not want to voice her opinion on goals and compromises.

@oceiv It turns out I am not physically well enough to try to keep up with this thread so I am going to back out at this time. I can't remember if I already post this a few days ago and apologize if it is a duplicate. Thank you for trying to include me and I wish you guys the best on this very important advocacy project.