Jeannette Burmeister acquired foia document re. P2P

[Snowdrop]

I thought perhaps they were involved in communications. That is, helping the NIH people communicate with us.

 

[jimells]

Appreciate the breakdown @Valentijn.

S Vernon is very cozy with Maier and co. I think there are a few emails from Vernon yet to come.

Is there a 5th columnist in the government ranks - they appeared surprised about some info getting out?

There are "5th columnists" scattered throughout most any bureaucracy. Back in the "good ole days" these were the people that investigative journalists relied on for the real story. Sadly there are few investigative journalists anymore. Of course, the job of supervisors is to sniff out disloyalty and take appropriate action.

I'm pretty sure I got some inside help in one of my Medicaid appeals a few years ago. The State was required to send me a copy of what they were to present at a hearing. Those papers never arrived, and nobody knew until the hearing started, which meant the hearing could not proceed. The hearing had already been delayed once. My free lawyer refused to agree to another postponement, and the State could not have won on the merits anyway, so they gave up. Although it may have just been incompetence, I suspect some lowly paper-pusher read my file and simply "forgot" to send it.

 

[jimells]

The email from Suzanne Vernon was most intriguing to me because it cc'd a person at a company called iq solutions.
Perhaps it might be of some value to check them out and see if the patient community can't engage them more directly as to our very legitimate concerns. I'm not sure yet how to parse what I'm reading regarding them. Here's the link:

http://www.iqsolutions.com/

It looks to me like another of the endless array of consultants that have parasitized the federal government. The consultant industry is a really slippery bunch that will do whatever. If we were going to organize an in-person protest against HHS policies, IQ Solutions could be a possible target of a protest. In the labor movement this would be known as a "corporate campaign", where anybody or any company associated with the employer could be picketed.

As far as our grievances with HHS goes, I'm sure IQ Solutions could not care less. Their concern is to keep renewing the contract.

It's interesting that they are paying such close attention to the patient advocacy. I wonder how many employees (or probably consultants) they have reading our forum.

Hey guys! Hope you're having fun watching us watching you watching us!

 

[Seven7]

If they are so interested in public opinion, maybe we should open a tweeter chat and highlight the things we do not agree and find the way to call the media attention.

 

[Snow Leopard]

Is the redacted patient advocate possibly Suzanne Vernon? It looks like she worked at the CDC for a long time in at least some of the areas described in the relevant email.

No, it shouldn't be that hard to work out given the information provided though.

As to the rest of the comments, I know Vernon receives a lot of criticism for working within the system, but her commitment to ME/CFS is strong and she has done more good work than most people I can name.

 

[Kati]

I have read the Solve CFS comments re the P2P and while they did not get into details regarding the PACE trial, which in my opinion was necessary, they have done a very good job in making thing clear regarding what is needed and how P2P is not achieving anything in the draft.

 

[jimells]

As to the rest of the comments, I know Vernon receives a lot of criticism for working within the system, but her commitment to ME/CFS is strong and she has done more good work than most people I can name.

Unfortunately the road to Hell is paved with good intentions. Many sincere people have tried to reform "the system" from the inside, and many sincere people have failed. In the end they have to go along to get along, or else they get frozen out.

FDR (President Franklin Roosevelt) had the right idea when he supposedly told progressives, "I agree with you. Now make me do it." This was a tacit acknowledgement that changes only happen when pressure is applied from the outside.

 

[jimells]

I thought perhaps they were involved in communications. That is, helping the NIH people communicate with us.

More like helping the NIH talk pretty to our faces while they are stabbing us in the back.

 

[Snow Leopard]

Unfortunately the road to Hell is paved with good intentions. Many sincere people have tried to reform "the system" from the inside, and many sincere people have failed. In the end they have to go along to get along, or else they get frozen out.

The answer is that change is more likely to occur when more people are working on all sides. Vernon is not invested in the status quo, though some of the others she may be working with, probably are.

 

[jimells]

Vernon is not invested in the status quo, though some of the others she may be working with, probably are.

I don't mean to disparage Vernon in any way. I nothing about her or her organization. I do know that people in her position can easily find themselves in difficult situations that jeopardize their good intentions.

I do find it distressing that a few months ago her organization was sharply criticizing the research selection criteria and the P2P process. Now, not so much.

 

[Seven7]

People need to understand money moves the world PERIOD. No matter how good they try to represent us and even if they would really wanted to. We are fighing against an stablished system that has nothing to do w intentions, or how hard you work: If this is not convieninet for the Lobbiest (inssurance company) the only way to make a difference is to attack the biggest interest.

Only media, Noise and questioning will have a chance here. Until all media, TV internet get so much attention that they are forced to do something the change will be so slow and to the interest of the money. Not us. We need a campain as powerful as the ALS ice bucket but something unique that will catch track, where we point out the abuse.

 

[Esther12]

I don't mean to disparage Vernon in any way. I nothing about her or her organization. I do know that people in her position can easily find themselves in difficult situations that jeopardize their good intentions.

I don't know much about Vernon other, but more generally, it is a bit disturbing how naturally passive people on the inside seem to become. I thin that there is something innate to (most of) humanity which drives us to suck up to those with power.

In non-CFS areas I've seen this happen with people I know. Also, 'regulatory capture' is a well known phenomenon, and I've seen a few things about this and banking regulators and the recent financial crisis that have reminded me of CFS patient groups.

 

[caledonia]

People need to understand money moves the world PERIOD. No matter how good they try to represent us and even if they would really wanted to. We are fighing against an stablished system that has nothing to do w intentions, or how hard you work: If this is not convieninet for the Lobbiest (inssurance company) the only way to make a difference is to attack the biggest interest.

Only media, Noise and questioning will have a chance here. Until all media, TV internet get so much attention that they are forced to do something the change will be so slow and to the interest of the money. Not us. We need a campain as powerful as the ALS ice bucket but something unique that will catch track, where we point out the abuse.

Yes - if you read Jeannette's FOIA info, you will notice that HHS is monitoring our online posts and the media and they seem sensitive to what is being said, and how big things blow up.

This can be used to our advantage.

I encourage everyone on this thread, if you're not already a member to please join http://meadvocacy.org.

 

[WillowJ]

The answer is that change is more likely to occur when more people are working on all sides.

Yes.

We need to stick together: those working the inside channels and those working the outside channels.

Everyone is doing whatever they think they can make a difference by doing.

We don't need to have "approved" strategies versus "bad" strategies, but can support everyone equally, while everyone does their thing.

Whoever has the "seat at the table to prevent us from being on the menu" will use the seat at the table to speak from the table. Whoever is good at rallies and petitions and so on will keep on speaking from the grassroots.

We don't have different goals, just different strategies. Everyone wants positive change so that patients are recognized (as actual patients as deserving as anyone with lupus, RA, MS, etc.) and get proper medical research and medical treatment. That day is coming. But we still need to push for it.

All the (legal, ethical) ways we know how.

 

[Kati]

Yes.

We need to stick together: those working the inside channels and those working the outside channels.

Everyone is doing whatever they think they can make a difference by doing.

We don't need to have "approved" strategies versus "bad" strategies, but can support everyone equally, while everyone does their thing.

Whoever has the "seat at the table to prevent us from being on the menu" will use the seat at the table to speak from the table. Whoever is good at rallies and petitions and so on will keep on speaking from the grassroots.

We don't have different goals, just different strategies. Everyone wants positive change so that patients are recognized (as actual patients as deserving as anyone with lupus, RA, MS, etc.) and get proper medical research and medical treatment. That day is coming. But we still need to push for it.

All the (legal, ethical) ways we know how.

What @willow said

 

[alex3619]

We don't have different goals, just different strategies. Everyone wants positive change so that patients are recognized (as actual patients as deserving as anyone with lupus, RA, MS, etc.) and get proper medical research and medical treatment. That day is coming. But we still need to push for it.

(My bolding).

For the most part I think this is right. However its complicated by many of us having different information, and different ways of analyzing that information. Our end goals are pretty much the same, but what we do to try to get there varies. We all want a cure, and we all want to be treated better - not just by doctors, but by commercial and government agencies, relatives, friends and the general public.

I do think big charities can be co-opted though. Its not so much selling out, its more that when they get locked into small gains they don't want to jeopardize those, so become very conservative.

Its not all about money either. There are huge ideological forces driving things too, as well as other forms of power that are not based on money. How people in power think the world should be is an issue, and a huge issue if that ideology is out of touch with reality.

 

[Esther12]

I do think big charities can be co-opted though. Its not so much selling out, its more that when they get locked into small gains they don't want to jeopardize those, so become very conservative.

Yeah - I think that some patient group can become very risk averse, and underestimate their own power, feeling like they have to go along with bad stuff in order to achieve something. I think that this underestimates the power patient opposition to some of the problems around CFS can have, and the harm that can be done by some groups meekly going along with it in exchange for a few crumbs from the table.

(That sounds like I'm saying we should boycott the IOM process, when I really don't know enough about it to make any sort of judgement like that. These are just general comments, and I was thinking more about the spin we've seen from PACE than anything else).

 

[Valentijn]

Part 3 is up, with Jeanette's blog entry at http://thoughtsaboutme.com/2014/10/...ional-meeting-mecfs-is-a-burden-for-patients/ and the document at https://www.dropbox.com/s/0uzogqlh38bz75o/FOIA_P2P_Batch#4.pdf?dl=0

 

[Valentijn]

Paris Watson (14-JAN-2013): She wants someone from the Substance Abuse and Mental Health Services Administration to be involved in the organizational meeting to discuss ME/CFS as a potential P2P topic.

Paris Watson (14-JAN-2013): Suggests that someone from the National Institute of Mental Health be included. Their representative is Mike Rudorfer who was involved in the FDA committee which reviewed ampligen (he voted in favor of approving it).

Susan Meier (14-JAN-2013):

It might not be helpful to have a new CFS person from NINR [National Institute of Nursing Research] on the committee if that person is not well versed in the happenings.

Lots of names listed from various agencies, but not much else going on yet.

 

[jimells]

It might not be helpful to have a new CFS person from NINR [National Institute of Nursing Research] on the committee if that person is not well versed in the happenings.

Well, this is interesting. It's more important for committee members to be current on the politics and the gossip instead of the medical research. These emails are coming back to bite them in the butt, haha! I always wonder why people want to write everything down...