Poll: IOM Contract
- Thread starter asleep
- Start date
Nielk
Senior Member
- Messages
- 6,970
I hope that people take the time to vote so that we can all have a better picture of what's going on.
Nielk
Senior Member
- Messages
- 6,970
It's interesting that there have been 34 views so far on this thread yet only 7 votes. Is it that there were no choices that fit your category?
Undisclosed
Senior Member
- Messages
- 10,157
Hi Nielk. I voted. I like your options. I would hate to see any votes for the last one though.
Nielk
Senior Member
- Messages
- 6,970
Thank you Kina. We appreciate any and every vote, no matter what choice you pick. This is an easy quick way to share your view, without anyone knowing who you are.
Sushi
Moderation Resource Albuquerque
- Messages
- 19,970
- Location
- Albuquerque
I just voted too.
In brief, here is why I think more patients aren't getting actively involved:
1) we want to act in concert with "the 35" but don't know what they are doing and planning.
2) the statement from the 35 was signed before the contract was executed (or whatever the right language is). We would like to know what they are doing now, and what they would advise patients to do so that what we do supports what they are doing.
3) we aren't sure what is "naive" political advocacy and what is "savvy' political advocacy..
4) there are too many threads on this subjects for the average brain-fogged patient to read and take in, so many members don't know what to read.
5) the statement from Dr. Bateman has confused patients--are the others thinking the same thing? What are they thinking? We want to know!
If there were clear information on some of these points I think patients would rally behind the 35 and take action.
Sushi
In brief, here is why I think more patients aren't getting actively involved:
1) we want to act in concert with "the 35" but don't know what they are doing and planning.
2) the statement from the 35 was signed before the contract was executed (or whatever the right language is). We would like to know what they are doing now, and what they would advise patients to do so that what we do supports what they are doing.
3) we aren't sure what is "naive" political advocacy and what is "savvy' political advocacy..
4) there are too many threads on this subjects for the average brain-fogged patient to read and take in, so many members don't know what to read.
5) the statement from Dr. Bateman has confused patients--are the others thinking the same thing? What are they thinking? We want to know!
If there were clear information on some of these points I think patients would rally behind the 35 and take action.
Sushi
I answered yes, but it didn't describe me exactly.
It says I don't know what to do!
That's not entirely true. Just partially.
Can a thread be made simultaneously to this poll for those interested in discussing the steps that might be taken for moving forward?
I am new to PHoenix Rising, I am not new to fighting/stopping things politically. I am rusty though.
I have at least one remaining strong DC contact who is willing to go to bat for us.
But I don't want to do that without knowing what people want.
She can help us explore different avenues whether the injunction/legal route or support from key representatives, whatever we want to do, or both. Or there may be other routes.
I need the problem boiled down to three bullet points for her.
And have the supporting information for that ready to go...
Deeper information can be continued to be gathered during that time she is talking with people.
That is one way to go. I am sure there are others.
It says I don't know what to do!
That's not entirely true. Just partially.
Can a thread be made simultaneously to this poll for those interested in discussing the steps that might be taken for moving forward?
I am new to PHoenix Rising, I am not new to fighting/stopping things politically. I am rusty though.
I have at least one remaining strong DC contact who is willing to go to bat for us.
But I don't want to do that without knowing what people want.
She can help us explore different avenues whether the injunction/legal route or support from key representatives, whatever we want to do, or both. Or there may be other routes.
I need the problem boiled down to three bullet points for her.
And have the supporting information for that ready to go...
Deeper information can be continued to be gathered during that time she is talking with people.
That is one way to go. I am sure there are others.
Sparrowhawk
Senior Member
- Messages
- 514
- Location
- West Coast USA
Sushi's points above are quite cogent IMHO.
The choices in the poll make it difficult for me to vote -- I'm at the point where I don't think it can be stopped but I don't know if engagement is the right path. Yet not to try to get some influence over the nominees would be foolish. I still sign whatever petitions, to so I could also choose the second to last option on the list above.
I'm most discouraged at the assertion that nominees be "unbiased." If I have that right, that could exclude all experts on the disease, or any of the 35, or anyone that thinks the CCC is sufficient, right?
Don't mean to sound obstructionist, just couldn't find a category I fit into above.
The choices in the poll make it difficult for me to vote -- I'm at the point where I don't think it can be stopped but I don't know if engagement is the right path. Yet not to try to get some influence over the nominees would be foolish. I still sign whatever petitions, to so I could also choose the second to last option on the list above.
I'm most discouraged at the assertion that nominees be "unbiased." If I have that right, that could exclude all experts on the disease, or any of the 35, or anyone that thinks the CCC is sufficient, right?
Don't mean to sound obstructionist, just couldn't find a category I fit into above.
Could it be guest viewers who can't vote or is this thread seen by members only? I am a new member, but lurked here for some time. I am still confused in finding my way around here/trying to learn more.
Also, in my advocacy experience, many people are non committal until the ball gets rolling. But only if the ball rollers appear to strongly have their stuff together.
In other words lack of responses does not mean opposition.
SpecialK82
Ohio, USA
- Messages
- 993
- Location
- Ohio, USA
I haven't had the energy to read much of the threads on this subject but a question came to mind as soon as I read the letter from the 35 experts. What about the experts that were obviously missing from the letter - what say they? I don't like to judge a situation without hearing everyone's input. I would really be interested to hear the discussions that took place and how many experts declined to sign. For example, Dr. Bateman makes great points in her letter, she wants something better than the CCC. And of course, this would require that our good experts are at the table to accomplish such a thing.
I would be curious to know if the community would support the IOM contract if we, the patients, were able to chose all of our good experts to participate??
I would be curious to know if the community would support the IOM contract if we, the patients, were able to chose all of our good experts to participate??
Sadly, The problem is not in the panel make up. The problem, ultimately boils down to whether the IOM could come up with a better diagnostic description even if filled with every best expert.
It can't. It has shown that it can't with Gulf War Syndrome. This is a politically organized body, with a political and non medical goal in mind. Sadly.
No matter if we got a dream team on it, or a compromise team. Whoever is on it, is ultimately beholden to the economic goals of the disability insurance interests behind the IOM. And whatever reasons, currently unclear, that the DHHS chose to go with them over clear preference and evidence to go elsewhere for a credible new definition.
This situation may be seem new but it happens all the time. And not just to ME/CFS.
It divides and conquers a group that has powerful unmet needs (that will cost money and change) and that has come together in strength and been building more strength.
It kills several birds with one stone.
Sushi, thanks for the great input. Has anyone reached out to all/some of the other 35 more recently? Perhaps this should be a higher priority and I will look into it.
Delia, what sort of points, or what sort of format would be ideal for your contact? Or in other words, what sort of angle would be best to approach your contact from?
Sparrowhawk, I thought about including a choice that indicated one ideally wanted it stopped but that engagement was necessary as a backup (or something along the lines of supporting both strategies). I chose not to include it as it would have had to opposite effect of creating overlapping answers. I personally think that these two strategies are not mutually exclusive.
SpecialK82, I fully understand the desire to have everyone's input. But the reason we likely can't is because HHS/IOM are acting in such haste (which alone says a lot about their motives).
Delia, what sort of points, or what sort of format would be ideal for your contact? Or in other words, what sort of angle would be best to approach your contact from?
Sparrowhawk, I thought about including a choice that indicated one ideally wanted it stopped but that engagement was necessary as a backup (or something along the lines of supporting both strategies). I chose not to include it as it would have had to opposite effect of creating overlapping answers. I personally think that these two strategies are not mutually exclusive.
SpecialK82, I fully understand the desire to have everyone's input. But the reason we likely can't is because HHS/IOM are acting in such haste (which alone says a lot about their motives).
SpecialK82
Ohio, USA
- Messages
- 993
- Location
- Ohio, USA
Yes, I agree asleep, I don't like that we weren't notified of the process, also am concerned about the IOM treatment of GWI, I hope we get a good explanation for both of these issues.
Sushi
Moderation Resource Albuquerque
- Messages
- 19,970
- Location
- Albuquerque
Could it be guest viewers who can't vote or is this thread seen by members only? I am a new member, but lurked here for some time. I am still confused in finding my way around here/trying to learn more.
Also, in my advocacy experience, many people are non committal until the ball gets rolling. But only if the ball rollers appear to strongly have their stuff together.
In other words lack of responses does not mean opposition.
Hi Delia,
This poll is placed so that everyone can see it--members and guests. But only members can vote.
I know it is hard to learn how to navigate this forum. If you have any questions, you can contact me on chat or conversation and I can probably answer most navigation questions.
Best,
Sushi
Some background: I had been away from Phoenix Rising and other ME/CFs forums/research etc for almost two years. First day I got on was the call for action to contact representatives re: the IOM contract, which was days away. I tried to get up to speed as best I could. Wrote my own letters, as well as sent on my form letter plus all the background info that was available to friends and family at that time, so they too could send letters.
One of those was my DC contact, Who really wants to help. So she knows some background. But is not well versed in it.
What she needs from us is the quick one two three that gets the gist problem across to her contacts., To get her foot in the door with them.
I don't feel very able to summarize it/boil it down.
Maybe:
What is happening?
Why is this hurtful?
What help is needed?
Once my contact gets an interested helper, then we be prepared to give them any information or help they need. And they help us.
It would be good to choose an articulate and knowledgable person from here to interact with the helper/their staff. Someone fair, and trustworthy, that even those who are not sure about opposing this, can feel good that the person will represent the group with care.
This is such a great Analysis!
As I said in another comment I am absolutely NEW to this issue! And I am trying to get up to speed. Forgive any ignorance I may have.
For me, the cogent points about the 35:
Ostensibly they wrote the letter to fight the IOM being the body to make the new dx criteria?
That not all important researchers and those who might've been on the letter, weren't on the letter does not necessarily mean they are against the letter. We never know the political and economic pressures on persons in this situation.
That 35 Research Scientists (that's a very high number in my 20+ years of political advocacy,) whose livelihoods depend on their reputation and credibility did write and sign this letter is extremely significant. And getting involved in these can easily tar a researchers name undeservedly and stay with them for a career. It can ruin a career,
They took a great risk to be our friend. To do the right thing.
This may sound condescending, and you and others may have much more experience than me, but all political situations can often be boiled down to an Aesop fable or other parable. But people get lost in the complexities of the details. And this has some of the greatest complexities: a very complex and yet unknown illness, a very diverse group of constituents and people who have the illness in very diverse ways... And too many more complexities to name.
But for me, it boiled down to (and there's probably a better parable than this)
The dog holding a bone in his mouth, sees his reflection in the pond and wants the better bone. (We want the better diagnostic criteria and better research and better support) so the dog drops his bone and goes for the possible better bone, and ends up with none. Not even the one he had.
It's very important to not drop the bone, with this shimmery, yet slippery promise of a better bone.
The 35 have told us the bone we have us good for now. Hang on to it.
I personally put my trust in those who took the risks to help us, over those who promise to help us, but have already broken promises.
I meant could that account for larger numbers of viewers as opposed to voters?
And yes, I am still lost using this site
I just didn't want to be ignorant about who could view it, to decide if there was significance in the difference in the numbers. This is such a great Analysis!
As I said in another comment I am absolutely NEW to this issue! And I am trying to get up to speed. Forgive any ignorance I may have.
For me, the cogent points about the 35:
Ostensibly they wrote the letter to fight the IOM being the body to make the new dx criteria?
That not all important researchers and those who might've been on the letter, weren't on the letter does not necessarily mean they are against the letter. We never know the political and economic pressures on persons in this situation.
That 35 Research Scientists (that's a very high number in my 20+ years of political advocacy,) whose livelihoods depend on their reputation and credibility did write and sign this letter is extremely significant. And getting involved in these can easily tar a researchers name undeservedly and stay with them for a career. It can ruin a career,
They took a great risk to be our friend. To do the right thing.
This may sound condescending, and you and others may have much more experience than me, but all political situations can often be boiled down to an Aesop fable or other parable. But people get lost in the complexities of the details. And this has some of the greatest complexities: a very complex and yet unknown illness, a very diverse group of constituents and people who have the illness in very diverse ways... And too many more complexities to name.
But for me, it boiled down to (and there's probably a better parable than this)
The dog holding a bone in his mouth, sees his reflection in the pond and wants the better bone. (We want the better diagnostic criteria and better research and better support) so the dog drops his bone and goes for the possible better bone, and ends up with none. Not even the one he had.
It's very important to not drop the bone, with this shimmery, yet slippery promise of a better bone.
The 35 have told us the bone we have us good for now. Hang on to it.
I personally put my trust in those who took the risks to help us, over those who promise to help us, but have already broken promises.
This blog post and those near it in time cover the situation pretty well:
http://thoughtsaboutme.com/2013/10/02/perfect-is-the-enemy-of-good/
Sort of illustrates your fable, doesn't it?
BTW, it is now 35 experts again. Elly Stein has notified HHS that she intended to sign but somehow her signature was left off. If we're going to speculate on who might have wanted or not wanted to sign, I'd speculate that there are others who would sign but didn't get the chance or didn't have time to check it out first.
Iquitos,
Thanks for the link!
You know I almost wrote originally that we can't assume Dr Bateman is as politically sophisticated as we may think.
Many people aren't.
I did not realize the CAA had actually been advocating (at best, pressuring at worst) the signers to rescind their support for CCC and support the IOM.
I can't yet read the other blog posts as I am emotionally drained today for my own reasons, and physically going into another of my recurrent flus.
But, this puts the CAA into a new category for me.
Starting to Remind of the VOA. (Voice of the Retarded) yeah, that's their name. They started out as one of the oldest advocacy groups for parents with children with developmental disabilities but ultimately fought very hard against every important issue and funding for things kids and families needed, Outside of institutionalization, that is. And of course eventually were outed as overwhelmingly funded by the disability institutional industry.
Tho many individuals stopped donating, in reality we were nothing compared to what they pulled in from the big pockets of organizations opposed to the needs the VOA purportedly served.
Now, I'm not saying that that's the case here, but it does always help to check out the donors' lists and amounts of support to any advocacy agency that has put it's name to your cause. Could be good to request.
It's always good to know who you're dealing with.
So sad.
Thanks for the link!
You know I almost wrote originally that we can't assume Dr Bateman is as politically sophisticated as we may think.
Many people aren't.
I did not realize the CAA had actually been advocating (at best, pressuring at worst) the signers to rescind their support for CCC and support the IOM.
I can't yet read the other blog posts as I am emotionally drained today for my own reasons, and physically going into another of my recurrent flus.
But, this puts the CAA into a new category for me.
Starting to Remind of the VOA. (Voice of the Retarded) yeah, that's their name.
They started out as one of the oldest advocacy groups for parents with children with developmental disabilities but ultimately fought very hard against every important issue and funding for things kids and families needed, Outside of institutionalization, that is. And of course eventually were outed as overwhelmingly funded by the disability institutional industry. Tho many individuals stopped donating, in reality we were nothing compared to what they pulled in from the big pockets of organizations opposed to the needs the VOA purportedly served.
Now, I'm not saying that that's the case here, but it does always help to check out the donors' lists and amounts of support to any advocacy agency that has put it's name to your cause. Could be good to request.
It's always good to know who you're dealing with.
So sad.
I think some things to emphasise, Delia, are:
1) In any definition effort for a mainstream disease the clinicians and researchers would be the main people involved in creating the definition. It's critical that this be the case here as well.
2) Specificity. Chronic fatigue is a feature of many diseases. ICF (ideopathic [unidentified] chronic fatigue) is not the creature we want to define here. A definition is no good unless it actually defines a specific set of patients, be it a specific disease like tuberculosis or a class of disease which then has to be subgrouped like cancer. ICF is not a class of disease any more than coughing is a class of disease.
Doctors/researchers who just come in "off the street", as it were, even if they sometimes see "CFS" patients in their practice (unfortunately this does include some people who specialize in "CFS") are not going to understand how to create specificity because actually a lot of the literature calling itself by the name of CFS deals with ICF. Even the best CFS definitions are not particularly specific (though many doctors in clinical practice don't even use any definition at all--and some in research change the definition enough that it could be said the same for them). Definitions for ME are hardly ever used. This takes a lot of work to figure out, and if someone comes with the approach that they need to be "unbiased" and include everything, it will end up a total disaster.
3) it's not unusual for the government to be involved in disease definitions in other diseases--though it isn't required. It probably sounds extreme to the government, for us to ask them to step out since it is customary for the government to be involved from time to time, in even mainstream diseases. However they would normally follow rules like 1 and 2. It's highly suspicious that they did not in this case start with 1. So I think it's clear and a fair point that they are doing it wrong.
4) it's not unusual for the docs involved with the disease to define the disease themselves. Usually this is no problem. It's peculiar that the government is objecting to what our docs are doing in writing their own definitions.
It's possible that in our case the problem is that we have no specialty or college (e.g. American College of Rheumatology, not an educational institution). Maybe government experts would be better focused on helping our docs create a new specialty of neuro-immune disease and establish a college/ certification. Then they wouldn't have to stress over us so much. We could do our own thing, and they could spend their time on something else.
It's possible the problem is that there is comparatively little research. Maybe the government effort would be better focused on increasing basic research for biomarkers and biological disease mechanisms. There are many things they could do to increase research, such as fund more and larger grants, give us a home in a more respected and better-funded NIH Institute, use educational materials for doctors and medical schools that (instead of that trash about a well-studied yet mysterious ailment which seems to be related to stress, deconditioning, and depression but might have some minor features of sleep, immune, and autonomic dysfunction) focus on the disease as an interesting disease which has not been well-studied with indications of immune, autoimmune, or infectious etiology, neurological features, autonomic features, post-exertional relapse, etc.
1) In any definition effort for a mainstream disease the clinicians and researchers would be the main people involved in creating the definition. It's critical that this be the case here as well.
2) Specificity. Chronic fatigue is a feature of many diseases. ICF (ideopathic [unidentified] chronic fatigue) is not the creature we want to define here. A definition is no good unless it actually defines a specific set of patients, be it a specific disease like tuberculosis or a class of disease which then has to be subgrouped like cancer. ICF is not a class of disease any more than coughing is a class of disease.
Doctors/researchers who just come in "off the street", as it were, even if they sometimes see "CFS" patients in their practice (unfortunately this does include some people who specialize in "CFS") are not going to understand how to create specificity because actually a lot of the literature calling itself by the name of CFS deals with ICF. Even the best CFS definitions are not particularly specific (though many doctors in clinical practice don't even use any definition at all--and some in research change the definition enough that it could be said the same for them). Definitions for ME are hardly ever used. This takes a lot of work to figure out, and if someone comes with the approach that they need to be "unbiased" and include everything, it will end up a total disaster.
3) it's not unusual for the government to be involved in disease definitions in other diseases--though it isn't required. It probably sounds extreme to the government, for us to ask them to step out since it is customary for the government to be involved from time to time, in even mainstream diseases. However they would normally follow rules like 1 and 2. It's highly suspicious that they did not in this case start with 1. So I think it's clear and a fair point that they are doing it wrong.
4) it's not unusual for the docs involved with the disease to define the disease themselves. Usually this is no problem. It's peculiar that the government is objecting to what our docs are doing in writing their own definitions.
It's possible that in our case the problem is that we have no specialty or college (e.g. American College of Rheumatology, not an educational institution). Maybe government experts would be better focused on helping our docs create a new specialty of neuro-immune disease and establish a college/ certification. Then they wouldn't have to stress over us so much. We could do our own thing, and they could spend their time on something else.
It's possible the problem is that there is comparatively little research. Maybe the government effort would be better focused on increasing basic research for biomarkers and biological disease mechanisms. There are many things they could do to increase research, such as fund more and larger grants, give us a home in a more respected and better-funded NIH Institute, use educational materials for doctors and medical schools that (instead of that trash about a well-studied yet mysterious ailment which seems to be related to stress, deconditioning, and depression but might have some minor features of sleep, immune, and autonomic dysfunction) focus on the disease as an interesting disease which has not been well-studied with indications of immune, autoimmune, or infectious etiology, neurological features, autonomic features, post-exertional relapse, etc.