Poll: IOM Contract

[justinreilly]

Delia,

Thank you for getting involved! People like you are who we desperately need.

Btw, CAA no longer discloses its donor list. You can find some major donors on their IRS form 990 I think. There is also a database by some company that compiles a list of major donors to non-profits- this they do by looking at the lists of grant beneficiaries of many foundations, etc which are required by law to be disclosed. I saw this list a few years back and if I remember correctly was very top heavy with small foundations on health that would have no idea of how bad CAA is. They add up lots of medium donations, lots of $10,000, etc. donations from various random little foundations, if memory serves.

I am a strong proponent of us ME patients getting more involved lobbying Congress. I haven't been able to do anything on this issue other than the usual letter sending. We are so sick, that most patients have no energy for advocacy. And many patients, in my experience, favor contacting HHS rather than congress, which is a mistake, bc HHS has consistently over 30 years shown they are opposed to ME science and patients. My ultimate goal is to raise money we can use for lobbying congress, especially the committee members who control HHS funding such as HELP committee (I believe in the senate and stands for Health, Education, Labor and Procrastination, actually not sure about the P : ) ).

Here is a good summary of the IoM situation, although I don't think PANDORA has done a bad job:
http://forums.phoenixrising.me/index.php?threads/summary-of-the-iom-contract-situation.25932/

 

[Delia]

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 no longer 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 may be asking a lot for us to ask the government to step out since it is customary for the government to be involved from time to time, in even mainstream diseases. However it would normally follow rules like 1 and 2. It's highly suspicious that they did not in this case start with 1.

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.

This is great!

What I'm doing at this point is taking these and working with my contact to create the quick 1--2-3 she needs to get her foot on the door. Since she's been doing this for 20plus years she'll know what she needs and you guys are helping me giving her the good information to create that opening she needs.

And then the full body of these are the second step once she gets their attention.

I won't have her start talking to anyone, until I present the points here for feedback.

 

[Delia]

Delia,

Thank you for getting involved! People like you are who we desperately need.

Btw, CAA no longer discloses its donor list. You can find some major donors on their IRS form 990 I think. There is also a database by some company that compiles a list of major donors to non-profits- this they do by looking at the lists of grant beneficiaries of many foundations, etc which are required by law to be disclosed. I saw this list a few years back and if I remember correctly was very top heavy with small foundations on health that would have no idea of how bad CAA is. They add up lots of medium donations, lots of $10,000, etc. donations from various random little foundations, if memory serves.

I am a strong proponent of us ME patients getting more involved lobbying Congress. I haven't been able to do anything on this issue other than the usual letter sending. We are so sick, that most patients have no energy for advocacy. And many patients, in my experience, favor contacting HHS rather than congress, which is a mistake, bc HHS has consistently over 30 years shown they are opposed to ME science and patients. My ultimate goal is to raise money we can use for lobbying congress, especially the committee members who control HHS funding such as HELP committee (I believe in the senate and stands for Health, Education, Labor and Procrastination, actually not sure about the P : ) ).

Here is a good summary of the IoM situation, although I don't think PANDORA has done a bad job:
http://forums.phoenixrising.me/index.php?threads/summary-of-the-iom-contract-situation.25932/

 

[WillowJ]

This is great!

What I'm doing at this point is taking these and working with my contact to create the quick 1--2-3 she needs to get her foot on the door. Since she's been doing this for 20plus years she'll know what she needs and you guys are helping me giving her the good information to create that opening she needs.

And then the full body of these are the second step once she gets their attention.

I won't have her start talking to anyone, until I present the points here for feedback.

There's a quick 1-2-3 on Jennie's blog:
http://www.occupycfs.com/2013/10/10/convergence/

 

[Delia]

Delia,

Thank you for getting involved! People like you are who we desperately need.

I hope I can help. I hope I can use my past experience, even if it is from my bed!

Btw, CAA no longer discloses its donor list. You can find some major donors on their IRS form 990 I think. There is also a database by some company that compiles a list of major donors to non-profits- this they do by looking at the lists of grant beneficiaries of many foundations, etc which are required by law to be disclosed. I saw this list a few years back and if I remember correctly was very top heavy with small foundations on health that would have no idea of how bad CAA is. They add up lots of medium donations, lots of $10,000, etc. donations from various random little foundations, if memory serves.

I wonder if it would be worth starting a thread where people could gather and post information like this on the various cfs organizations. And then maybe we could make a chart or something. Knowing who's really going to bat for you and who may not be can be critical. Especially moving forward. Not just in the IOM case, but all NE/CfS issues.

I am a strong proponent of us ME patients getting more involved lobbying Congress. I haven't been able to do anything on this issue other than the usual letter sending. We are so sick, that most patients have no energy for advocacy. And many patients, in my experience, favor contacting HHS rather than congress, which is a mistake, bc HHS has consistently over 30 years shown they are opposed to ME science and patients. My ultimate goal is to raise money we can use for lobbying congress, especially the committee members who control HHS funding such as HELP committee (I believe in the senate and stands for Health, Education, Labor and Procrastination, actually not sure about the P : ) ).

This is absolutely correct.

We should get a list of the committee members.

In fact, so many petitions are going to K Sebellius alone, it's like throwing them away. A petition might be started on Change.org or somewhere that goes to the committee that oversees DHHS or to the president.

Also letters or phone calls to representatives are important. When I was first getting advocacy training legislators would say that when they hear from five citizens on an issue it is like hearing from 5 million. No one ever contacts their representatives! They hear all day long from lobbyists.

(For anyone who's never called a representative: you will get staff. Be very polite and consise. It is basically leaving a phone message. Those staff people are your best hope so always be nice to them. These phone messages are more powerful than emails. Even if you just say: please help stop [whatever]. And that's all you say)

Here is a good summary of the IoM situation, although I don't think PANDORA has done a bad job:
http://forums.phoenixrising.me/index.php?threads/summary-of-the-iom-contract-situation.25932/

Thanks!

It's tough to do sophisticated advocacy in haste, but that's why so often these things are timed as they are,

In fact this is a great compliment: the efforts of advocates have come to the point of can't be ignored. And the requests are reasonable and valid.

That's exactly when you see this kind of political behavior to divide and confuse the group.

 

[Delia]

There's a quick 1-2-3 on Jennie's blog:
http://www.occupycfs.com/2013/10/10/convergence/

Thanks! This very helpful!

 

[Delia]

Thanks! This very helpful!

I would disagree though with the canoe analogy.

In this case there's no canoe. It's an illusion. Whether we are paddling in circles or are steering our "canoe" smoothly and beautifully through the waters.

The canoe we think we're in is in a holo deck. The canoe we're actually in is going over the falls.


There are indeed other political situations where yes, the canoe analogy works very well. I feel very strongly that This is not one of them.

The thing to paddle together on is holding tight to the CCC and the 35 experts. Those are the real canoe.

 

[justinreilly]

I would disagree though with the canoe analogy.

In this case there's no canoe. It's an illusion. Whether we are paddling in circles or are steering our "canoe" smoothly and beautifully through the waters.

The canoe we think we're in is in a holo deck. The canoe we're actually in is going over the falls.


There are indeed other political situations where yes, the canoe analogy works very well. I feel very strongly that This is not one of them.

The thing to paddle together on is holding tight to the CCC and the 35 experts. Those are the real canoe.

Jeanette Burmeister blogged the same thing- that our canoe is really going over the falls!

I think that idea of yours for a thread on info on our orgs is good. Right now I am focusing everything on the IoM situation. I think we will have to go after CAA a little later when dust settles. That said I have been sending emails to CAAs directors and officers making it clear this really means war if they stick with their position and inviting discussion with me, but they will not respond (though I did get to speak with Kris a longtime employee at CAA).

It is possible that not only are CAA pulling the wool over these little foundations eyes, it could be that some of them are fronts for insurers and are small to fly under the radar. I Have no idea.

 

[Delia]

Jeanette Burmeister blogged the same thing- that our canoe is really going over the falls!

I think that idea of yours for a thread on info on our orgs is good. Right now I am focusing everything on the IoM situation. I think we will have to go after CAA a little later when dust settles. That said I have been sending emails to CAAs directors and officers making it clear this really means war if they stick with their position and inviting discussion with me, but they will not respond (though I did get to speak with Kris a longtime employee at CAA).

It is possible that not only are CAA pulling the wool over these little foundations eyes, it could be that some of them are fronts for insurers and are small to fly under the radar. I Have no idea.

Yes! iOM first!

We can get more informed on the advocacy orgs like CAA after. But it is an eye opener, how they are behaving. Often it's best not to threaten war. No one listens to angry statements. They shut their ears and shut out anything else important we have to say.

It can be really effective to be perfectly calm and resolute!

I was taught it's terribly hard to discredit a thoughtful, informed person.

There's another old saying, the canoe one reminds me of: like the tree that doesn't Bend gets broken. We can bend, but only to bend over and protect our CcC and the 35 true friends of CFs.

We cannot bend so far to give over anything to the IOM , because a tree that bent is also easily snapped.

 

[alex3619]

[Putting on my HHS black hat] Oh, there is a canoe. Its on the far side of the lake, you will see it when you get there. If you put dibs in we will put your nominated person in a list and they might get a paddle. They don't decide where the canoe is going though, thats us. [Taking off my black hat]

When we get there we find its really a Dragon boat, we get one or two of the paddles for our nominated people, and the person steering the boat can kick anyone off the team if they do not steer with the rest. That is our risk.

If there had been proper consultation prior to this all starting, bringing us on board as stakeholders, and following the CFSAC recommendations, then the risks could have been avoided entirely, and we would be enthusiastically helping them. They chose not to do so. That is a violation of trust if nothing else. Why should we trust them at all?

What a Dragon boat looks like:

http://upload.wikimedia.org/wikipedia/commons/7/7a/Dragon_boat_budapest_2010.jpg

 

[justinreilly]

Delia
Yes, as Wally from Dilbert says, "They can't break you if you have no spine." : ) But seriously folks, I do agree with the philosophy that flexible trees don't snap. There is a long history of treachery from CAA, so I think at some point one must say "no mas" as advocate Tom Hennessy used to say. That said, I think your posts are really helpful and illuminating including this one.

 

[justinreilly]

Delia
Btw, you may not want to start reading this tomorrow since its a big task (700 pages), but, if you didnt know of it, Hillary Johnson's Osler's Web is essential reading- it is the And the Band Played On of our disease (it even had the same editor, who said that we got screwed over by HHS even worse than the AIDS patients were, which is true). Btw, when I say "big task" I just mean time consuming to finish, I found it a very thrilling narrative and have read it five times.

 

[Delia]

[Putting on my HHS black hat] Oh, there is a canoe. Its on the far side of the lake, you will see it when you get there. If you put dibs in we will put your nominated person in a list and they might get a paddle. They don't decide where the canoe is going though, thats us. [Taking off my black hat]

When we get there we find its really a Dragon boat, we get one or two of the paddles for our nominated people, and the person steering the boat can kick anyone off the team if they do not steer with the rest. That is our risk.


If there had been proper consultation prior to this all starting, bringing us on board as stakeholders, and following the CFSAC recommendations, then the risks could have been avoided entirely, and we would be enthusiastically helping them. They chose not to do so. That is a violation of trust if nothing else. Why should we trust them at all?

What a Dragon boat looks like:

http://upload.wikimedia.org/wikipedia/commons/7/7a/Dragon_boat_budapest_2010.jpg

Ha but also

I think because I've been here (edit: here as in this political situation) so very very often, I think there is no risk. Only certainty. Certainty of loss.

In any similar situation as this, it never, ever goes anywhere near to where the advocating group needs, and loses terrible ground. As I have always advocated for disability groups and concerns this is very disastrous.

There are situations where it is a true opportunity to be at the table. This just is not one of those times.

I am not against ever working with the opposition. I hope I can make that clear. This is just a very common set up to divide and conquer advocacy groups. And there is no opportunity for gain,
Or even maintaining what you have. it is certain loss.

The lure of "needing to be at the table" is a trap. In this case. I'm not being hyperbolic. It seems reasonable, we can't do anything so we better try to be there.

But walking away can be sometimes, the only advocacy move to make.

Not hot headed. Not in anger. But in resolution.

 

[Delia]

Delia
Btw, you may not want to start reading this tomorrow since its a big task (700 pages), but, if you didnt know of it, Hillary Johnson's Osler's Web is essential reading- it is the And the Band Played On of our disease (it even had the same editor, who said that we got screwed over by HHS even worse than the AIDS patients were, which is true). Btw, when I say "big task" I just mean time consuming to finish, I found it a very thrilling narrative and have read it five times.

I agree and I haven't yet read it!

I feel bad that I didn't study the history of CFS until recently. I was so sick, still raising my children, trying to find help and get better.

I have sooo much to do between now and October 25 paperwork wise for my medicaid and housing. And I'm getting my 'flu' .

I want to try and figure the "elevator speech" as my DC contact calls it (how to boil this down so she can start talking to people) she can't help me much as she's visiting friends this weekend) I want it done quickly so i can post it here for feedback before she starts talking to people.

I don't feel right having her speak on this without some permission from here.

Everything always happens all at once in my life. And always at the times I'm weakest.

 

[Delia]

Alex

[black HHS hat on] the free flow of ideas and input will be encouraged![black hat off]

Meaning disputes between advocates will be highly encouraged and allowed to derail any hint of progress!

 

[Ember]

There are situations where it is a true opportunity to be at the table. This just is not one of those times....

The lure of "needing to be at the table" is a trap.

I can't imagine serving on the IOM committee after having signed this statement in the open letter to Secretary Sebelius:

We strongly urge you to abandon efforts to reach out to groups such as the Institute of Medicine (IOM) that lack the needed expertise to develop “clinical diagnostic criteria” for ME/CFS. Since the expert ME/CFS scientific and medical community has developed and adopted a case definition for research and clinical purposes, this effort is unnecessary and would waste scarce taxpayer funds that would be much better directed toward funding research on this disease. Worse, this effort threatens to move ME/CFS science backward by engaging non-experts in the development of a case definition for a complex disease about which they are not knowledgeable.

 

[WillowJ]

Delia
Yes, as Wally from Dilbert says, "They can't break you if you have no spine." : ) But seriously folks, I do agree with the philosophy that flexible trees don't snap. There is a long history of treachery from CAA, so I think at some point one must say "no mas" as advocate Tom Hennessy used to say. That said, I think your posts are really helpful and illuminating including this one.

just to be clear, I posted Jennie's post because I'm interested in what various advocates and our doctors have to say and she collated those; at this point I don't think CAA can contribute to the discussion. I just skipped their opinion.

 

[Delia]

I can't imagine serving on the IOM committee after having signed this statement in the open letter to Secretary Sebelius:

This may be the best resource for the bullet points my friend in DC needs.

 

[Delia]

just to be clear, I posted Jennie's post because I'm interested in what various advocates and our doctors have to say and she collated those; at this point I don't think CAA can contribute to the discussion. I just skipped their opinion.

Oh it is a great resource. And it's true. It is best to know as much as you can what about as many members of your group think and feel as you can! One reason I feel overwhelmed/late to the issue.

I think, after I responded that little canoe thing bothering me in the back if my head grew to be a big canoe breaking my head open so I wanted to state my feelings on it.

It's such a common pitfall

Edit: I may have not tracked well when reading it. I was focusing on finding bulletin points. I thought that the canoe analogy was Jennie's summary/opinion. Not CAA. Or is Jennie from CAA? This is my biggest weakness in this advocacy effort. I'm not up to speed on the people and details. But I am up to speed in the political situation and the advocacy steps to take in a situation like this.

It's a time to positively resist. Resolute. With as much unity as can be gathered. Not unlike MLK, and nonviolent protest/resistance.

Calm and resolute. The haste, urgency and high emotional turmoil they've put us in, is a position we must transcend. I can't put on shoes and socks. I had to wear depends for two years. I am losing my home and have nowhere to go. These are just a tip of the iceberg of the terrible things I face and most of us face. We are strong. We transcend them everyday. Every horrible thing this illness has thrown at us.

We must transcend what seems to be an (bad wording brain dying now) an un-transcend able situation PEOPzlE who do not have our best interest in mind have put us in.

And stand with the 35 who have shown they DO have our needs in mind.

One of my trainers years ago, and damn if I can remember his name, worked with MLK. It was just a one day of training but it was very very helpful.

 

[WillowJ]

no worries, Delia.