Congressional Oversight Hearing ASAP &

[Roy S]

This is the first section of a longer article I have been writing for some time about advocacy. I suggest you read it all on the CFS knowledge center web site. It may be easier for some people to read there, and all the links are clickable. This is the URL for the post there:
http://cfsknowledgecenter.ning.com/forum/topics/unknown-cfs-congressional

Edited to add that the rest of the article is now later in this thread, direct link:
http://forums.aboutmecfs.org/showth...versight-Hearing-ASAP-amp&p=128282#post128282


ME/CFS Congressional Oversight Hearing

Preparation for an effective type of congressional oversight hearing to investigate the federal response to CFS was canceled by the CFIDS Association (CAA) in 1992 soon after it assumed responsibility for national advocacy. The hearing would have taken place in 1993. That fact is almost unknown. If it had happened it would have changed the history of ME/CFS. This is what happened then and why one needs to be done now.


I was the volunteer lobbyist for CFS in 1991 prior to Tom Sheridan. That fact is also almost unknown, but not important. Most people do not have a thorough understanding of lobbying and its relationships to advocacy, Lobbying is not rocket science, but it is often so poorly reported that most people have a wide variety of misunderstandings about it. It's one of the reasons why the US has such a large number of lobbyists.


There is a type of congressional oversight hearing that is sometimes referred to as a congressional investigation. These are different hearings than the yearly appropriations subcommittee hearings that cover CFS. Those hearings are brief with short Q&A (questions and answers, but often questions and acting) by federal officials. This is a web page with a basic explanation of the various types of congressional hearings:
http://en.wikipedia.org/wiki/United_States_congressional_hearing

The committees that can do oversight, investigation, and authorizing for ME/CFS are the House Energy and Commerce Committee http://tinyurl.com/dhxq65 and the Senate Committee on Health, Education, Labor, and Pensions (HELP) http://help.senate.gov/./index.html

These committees have the power to subpoena witnesses and compel them to testify under oath and penalty of perjury. The canceled hearing was going to be before the House Energy and Commerce Committee's Health Subcommittee. http://tinyurl.com/mvdohw


In 1992 and until recently Henry Waxman (CA) was the chairman of that Health Subcommittee. Sometimes a hearing can take place if the chairman alone wants it to happen. More often it is more than one committee member, especially one strong supporter. When the hearing was going to take place in 1993, Mike Synar (OK) was our strong supporter on the subcommittee, and Ed Taylor had done an excellent job getting that support. Frank Pallone (NJ) is the chairman now, and New Jersey has excellent ME/CFS advocates.


The people that would testify were being chosen. Walter Gunn wanted to testify about the CDC's failures. We could have, for example, had Brian Mahy from the CDC answering questions, including where the CFS money was really going. NIH officials such as Steve Strauss could have been included as well. The heads of the HHS, CDC, NIH, and NIAID could have been called. We also would have had our very best people testifying for us, including advocates, researchers, and doctors.


Government officials can and must be held accountable, but the balance of powers in the United States government has to be used effectively. The executive branch must be overseen by the congress and the courts. Brian Mahy reportedly lost his position at the CDC only after Rep. John Porter, then Chairman of the House Labor HHS Appropriations Subcommittee and our strong supporter in Congress at the time, insisted that he be brought by the head of the CDC to his hearing to answer questions about the funding scandal. If that 1993 hearing had happened, the CDC officials would almost certainly not have lied under oath at it about those funds and continued misusing the money.


At the present time probably the only practical way for a hearing like this to happen soon is if the CAA makes it happen. Kim McCleary was the executive director then and knows about this. The CAA has lost most of its members and much of its respect among experienced advocates since then. Advocacy has failed badly and people have lost faith in the CAA's ability to represent patients and make progress in Washington advocacy. If they want to regain some of the respect they once had, and rebuild their membership and support, here's what I suggest they do.


Engage the entire community by asking for input on exactly what the community wants done and work closely with the IACFS/ME. This would include who should testify, what should be in their testimonies and submitted for the record, and what questions should be put to the government officials. The strongest and most relevant facts in the history of ME/CFS should be used. Use everything possible to make the absolute strongest case for congressional oversight hearings and action. Make an all-out effort to get it covered in all possible media. Ask for help from the community to make it all happen. Build a coalition by including people, not alienating them.


The ME/CFS community knows there is a very serious risk that the course of the CDC alone could create an additional body of published papers to "prove" that ME/CFS is "all in your head" (or any other terminology). Funding for good science in the public and private sectors will be further impeded. Access to treatments will be further denied. This has already happened in England. It could take a long time to turn things around even after good science proves it wrong. The federal bureaucracy is very resistant to change.


The upcoming CFSAC meeting is going to have increased advocacy, including from the IACFS/ME. That's great and hopefully it will cause some changes, but the advisory committee has been largely ignored no matter how good its work has been. In order for advocacy at the federal level to be continually effective it must be integrated and coordinated. The attention is now necessarily on the CDC, but the NIH needs far more focus, especially for their dominant role in the world in funding extramural research that should go to places such as the Whittemore-Peterson Institute.


This congressional action needs to be done as soon as possible. It should have been done in 1993. Many things have changed since then. Opportunities have been lost and people have become discouraged. However, there is far more good published science, and more outstanding doctors and scientists to represent us. There is a record of proven malfeasance and lack of action at the government agencies. There is more consensus in the ME/CFS community about what needs to be done. There is a very good case to be made to Congress to convince them to have hearings and take action. If the CAA is not willing to take a much stronger and far more effective stance in Washington advocacy, it is time for other groups to step up and provide competent leadership. An inclusive coalition might work well.

Roy Snow

 

[Warbler512]

Wow

I hopped over to your full post through the link. Yet another of us aero-nuts with dreams that didn't fly like we'd hoped. And you're one of the early cases before Tahoe.

I don't think any of us can thank you, Tom, and others enough for the work you did and tried to do. I don't know how you're still alive. If there's a silver lining, you helped get Harry Reid on board, and I don't know how much sway he has with his own state's legislature, but if it's at all significant, it may now have made all the difference. Real difference. Not in the time frame we'd have wanted, but it looks like the main spark is coming from Sparks/Reno, whether the CAA supports, follows, or dissolves.

This is a toughie, about what CAA should do. I like their new direction, but like yourself, I hope it lasts and is substantial. You'd think Dr. Vernon would be what CAA needed, and maybe she is, except that with her past activities, the greater community doesn't trust her yet. Time will indicate the direction, possibly as soon as the end of this month.

In the meantime, get some rest and do give yourself a pat for the better things happening today.

 

[Dolphin]

I don't think any of us can thank you, Tom, and others enough for the work you did and tried to do.

Just to be clear, it was Roy who wrote the piece above (and deserves the credit for what he did).

 

[Roy S]

Thanks Warbler. I also guess that Susan Vernon may be a force for change to the better. Hope so.

Sarah, I know that brain fading feeling so well. The congressional committee structure is unchangeable, but it is set up for what we need. It's just that everything needs to be done correctly. A group of supportive senators and representatives (a caucus) would be great in addition.

Tom, no problem at all.

 

[Roy S]

I recently found an article on the CAA web site that I want to comment on along with some present and future issues.

Before the CAA took over Washington advocacy it was primarily done by Ted Van Zelst and I, and Barry Sleight before me. Joan Sutherland was doing some good things too, and I was involved in that as well. I think we were all doing it in a diplomatic manner. I guess I can only speak in absolute terms about myself, but I know I always did. Ted was always the model of diplomacy too from the beginning of CFS advocacy.

I even took a trip down to Charlotte to talk to Kim about temporarily toning down their very strong criticism of the NIH because I wanted to get the research centers grants, among other things. At the time the NIH research was intramural and done by Steve Strauss. She did leave something out of a Chronicle that was soon to go to press, and I appreciated that.

The article is written by Vicki Walker who was not hired until later, so I assume that this viewpoint came from Kim.

"In 1992 when the CFIDS Association took responsibility for leading national CFS advocacy, the relationship they inherited between federal scientists and CFS advocates was frosty, at best. Earlier advocates, taking a cue from AIDS activists, were strident in their justified anger over the government's disregard (and even animosity) toward CFS and the patients who suffered from it. The unfortunate side effect of this well-intentioned strategy was a breakdown of communication between federal health agency staff and activists, greatly reducing the ability to learn from one another."
http://www.cfids.org/cfidslink/2008/040902.asp

I fail to see any good reason to write things like that, especially since it was written recently. I had very carefully "defrosted" the NIH, and we got 3 research centers. It certainly wasn't enough, but it was progress and a welcome change in direction. I also wrote in the long article above that something happened at the advocacy meeting in Albany that "refrosted" that relationship.

I've seen remarks that criticize everyone that brings up the past problems, as if it's all in the past and doesn't matter anymore. The problem is that the past has shaped the present and the problems remain and will continue in the future unless fundamental changes are made. The management and leadership deficiencies have caused huge problems over the years that have crippled the movement. Other experienced people have written about problematic patterns of behavior at the CAA. I don't feel like repeating them here now. Things like this are not fun to write : but I think they need to be said. The deaths and vast amounts of misery that could be alleviated demand it. I've already stated my preference for new leadership.

The new retrovirus research has created some major advocacy opportunities. It provides the necessary aspects for a greatly expanded government response to a disease. I hope this is used wisely. Advocacy has gotten to a very bad state of affairs. The new lobbying firm that the CAA has retained should know how to make use of this and I hope good advice is taken this time.

This will be a case of research driving advocacy instead of vice versa. I really hope claims are not made otherwise. People see through continual spin and political slogans. Patients may lose substantial IQ, but not all common sense.

For some reason I've been thinking about my several great's grandfather Captain John Parker of Lexington Green fame. Just about everybody knows of the battle there that began the Revolutionary War and the quote from him "Stand your ground. Don't fire unless fired upon, but if they mean to have a war, let it begin here." There is more to the story that I find interesting. He wasn't wounded, but he saw his cousin shot and killed with a bayonet when he couldn't retreat. He rallied more men to fight the British when they came back through town; known as Parker's Revenge. Then he went on to Boston and the siege that later became the battle of Breed's Hill and Bunker Hill. The little-known fact is that he had to go by wagon because he was too sick with tuberculosis to ride a horse and he died four months later from that. That's on my mother's side of the family that I've always considered the mellow side. The other side is Dutch and stubborn as hell if necessary.

I guess I've been thinking about ME/CFS and some of the British...

 

[sarahg]

Yes! aha! caucus is the word I am looking for! (hard to believe I spent 4 years learning that stuff, huh? wonder where most of it went) I know they exist for several diseases and I am going to try to find out more about how they were formed. It seems that maybe if we get a few people in states or districts that might be interested they could just keep writing and asking. The sad thing is there are a lot of ways being associated with a group for "CFS" could be bad politically, though. Might make for derrogatory soundbytes at election time. If I were to help undertake an effort to try to push for this I personally would try to involve Arlen Spector, who is currently my senator, and has undergone extensive cancer treatments and is a pretty fact-based man. Unfortunately he is also very old and busy. I would also write to Chellie Pingree, who is a representative from my former state of Maine, because she is generally into reaching out to vastly underserved and unrecognized groups. And she is a serious knitter. (biased as it may be I have a deep trust in knitters) And I'd probably also ask Mike Michaud of Maine because I have campaigned for him, and no longer can because I am sick. There are reasons why I feel my other representatives and senators (I still feel political allegiance in both states) would probably not be great for the task. For instance, Olympia Snowe and the words "health care" have come up a bit too often lately! I'd really like to hear ideas and suggestions from people in other parts of the country about who may be good or bad for such a feat!

The investigation should probably take priority over such an endeavor, though, and I would like to hear more about what it would take to make that happen.

I finally read all the way through the history that you put up on cfskc, it is really impressive to hear it all. I'd like to thank you for all you have done to get us to where we are today. Know that you did the best you could for as long as you could. In some ways, it sadly confirmed fears I have always had about advocacy for this disease, that patients cannot advocate for themselves in perpetuity without risking what little health they have. I've spent a lot of the time that I think about things like this thinking about ways to make that apparent to a wider activist community...that there are people who cannot effectively fight the war that needs to be fought here and they are in heavy duty need of some reinforcements. That there are human beings whose very illness silences them at times and deprieves them of their right to assert all the injustices they have seen. We need to find ways to get healthy people to do our legwork without paying some professional lobbyists who, at the end of the day, are just doing their job. But then I think about how the message control even within this illness community is in dissarry. It pains me to see some of the stuff that comes out of the CFIDS association in terms of message, it always seems like they downplay this illness and assert the need for some sort of fuzzy feel-good awareness that isn't going anywhere. But I am fascinated by the work that PANDORA is doing and I hope they continue to stretch towards being a national organization. They seem to have done a great job informing, involving and bringing in the public. Theirs really is the kind of work I think represents my needs.

ok this has grown longer than intended and is rather rambly, I think I am trying to get it all out before the last bits of the immune globulin wear off and I descend once again into the world of brainlessness.

 

[Roy S]

Sarah,
I see you do know about these things.

The frustration is that the CAA controls Washington lobbying/advocacy.

You might be interested in doing a search for information on the MS caucus.

Healthy activists are in very short supply, but look how much the Whittemores have done! I'm increasingly impressed.

When I was living in Washington there was a prominent CFS patient whose husband was a lobbyist. He didn't want to get involved whatsoever.

Harry Reid once did a campaign commercial about his support for CFS. He won reelection by 400 votes that time.

 

[sarahg]

interesting to know about Harry Reid, hopefully times will change. I did some very minimal looking around and there are apparently caucuses for nearly every imaginable disease. some of them were stroke, diabetes, COPD, brain injury, kidney disease, HIV/AIDS, alzheimers, cancer, autism, cystic fibrosis, and spina bifida. So there really is a great deal of precedent for us to ask for this collectively. The most information I could find, and it seems among the most active, were for MS and Parkinsons.
I'm sorry if the links need to be cut and pasted, I haven't gotten the hang of how to make them work on this site yet.
Here is some good information about the Parkinson's caucus:

http://www.parkinsonsaction.org/Congressional-Caucus-on-Parkinson-s-Disease.html

there is a little blurb about the MS caucus here, but I know I have seen far more detailed info and of course I can't find it again:

http://carnahan.house.gov/index.php?option=com_content&view=article&id=290&Itemid=73

of course when I was almost done looking around I managed to find a list of all of them, on wikipedia of all places, not somewhere I go out of my way to get information by any means but here it is:

http://en.wikipedia.org/wiki/Caucuses_of_the_United_States_Congress


this website has links to all the caucuses that maintain websites or member lists, haven't waded through this one yet but I think it is going to yield the most info in the end.
http://thatsmycongress.com/index.ph...tes-for-house-caucuses-in-the-111th-congress/

So it seems to vary greatly caucus-to-caucus how active they are, or how big they are or how much they are just really for show. I'm going to keep looking into it later to see if I can find examples where they were spawned by requests from citizens and not by organizations. It may take years but I think we could do this. If nothing else it wouldn't hurt.

 

[justinreilly]

Roy,
Thank you. I agree that the past in this illness is important because it influences the present and future. For CDC, or anyone else, to say give up your "living in the past", "it doesn't matter any more" or something like that, I feel is aking to a robber or rapist saying that the crime spree doesn't matter because it ended last year.

FWIW- I demand from CDC a 180 degree change in paradigm and relieving of Dr. Reeves of his duties.
CDC is an unreliable source (to put it mildly). They have proven this over and over again for 25 years. I think anyone commenting on any of their pronouncements/ studies should make it very clear that they should be disregarded as misinformation unless proven (to a scientific certaintly) otherwise. This should be the official, publicized policy of CAA and anyone else in the field. Fool the public once, shame on you; fool the public 1,000 times, shame on us.

take care,
Justin

 

[Advocate]

Disappointed

I think anyone commenting on any of their pronouncements/ studies should make it very clear that they should be disregarded as misinformation unless proven (to a scientific certaintly) otherwise. This should be the official, publicized policy of CAA

Justin

On October 9, I went to the CAA website, expecting a celebration of the XMRV study. Instead there was a short paragraph buried at the bottom of the page. I checked again just now, October 24, and was disappointed to see that nothing has changed.

On Facebook just now, I was disappointed to see that a message from the CAA about the German study has a very negative headline.

It's no wonder that some people are asking, "Whose side is the CAA on?"

 

[Ruth]

caa = cfids.org ?

Dear Advocate [Re: Disappointed]

By CAA do you mean the CFIDS.ORG site? If you click on What's New? on the left you go to a page where it is the first item and if you click on more...here you get the following:

Landmark CFS research reported in Science magazine

In the Oct. 8, 2209 issue of Science Express, researchers at the Whittemore-Peterson Institute (WPI), the Cleveland Clinic and the National Cancer Institute (NCI) report that 67% of 101 chronic fatigue syndrome (CFS) patients tested positive for infection with xenotropic murine retrovirus (XMRV), a gammaretrovirus associated with a subset of prostate cancer. Only 3.7% of 218 healthy subjects tested were positive for the virus. Read the joint press release. An abstract of the article is available at http://www.sciencemag.org/cgi/content/abstract/1179052. The full article text is available to Science subscribers, American Association for the Advancement of Science members; one-day access to the AAAS site can be purchased for $15.00.

These important results provide evidence of the association of at least a subset of CFS cases with retroviruses, a hypothesis formed in the mid-1980s and pursued by several independent research groups. XMRV was recently discovered in a subset of prostate cancer patients tumor cells and the finding by Lombardi et al may be the first documentation of XMRV infection in women.

The authors raise questions about this discovery at the end of the article, including Is XMRV infection a causal factor in the pathogenesis of CFS or a passenger virus in the immunosuppressed CFS patient population? This question and others warrant additional investigation and the replication of this studys findings in other patient cohorts should be a priority for the field. There is currently no commercial test available for XMRV and studies of antiviral and antiretroviral treatments must be conducted to test their efficacy against XMRV infection.

The CFIDS Association of America congratulates Dr. Judy Mikovits and her team at the Whittemore-Peterson Institute and their collaborators at the Cleveland Clinic and NCI for this landmark discovery. The findings themselves and publication of them in a journal of the stature and circulation of Science is a highly significant contribution to the field. This study and the high-profile publication are important validation of the reality and seriousness of CFS and those who suffer and have been stigmatized too long.

Additional Information

"Xplained" by the CFIDS Association's Scientific Director (Oct. 15, 2009)
Statement from the CFIDS Association's Board of Directors (Oct. 10, 2009)
Making Sense of Medical Research (Oct. 13, 2009)
Article in the Scientific American about CFS and XMRV (Oct. 8, 2009)
Readers Ask: A Virus Linked to Chronic Fatigue Syndrome - The New York Times (Oct. 15, 2009)
The ME Association: MEA statement on retrovirus XMRV and ME/CFS
More media coverage (Spark!)
Citation:
Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome. Lombardi VC, Ruscetti FW, Gupta JD, Pfost MA, Hagen KS, Peterson DL, Ruscetti SK, Bagni RK, Petrow-Sadowski C, Gold B, Dean M, Silverman RH, Mikovits JA. Science 8 October 2009. 1179052.

http://www.cfids.org/temp/xmrv-press-release-oct09.asp

 

[Roy S]

Sarah, thanks for the links.
Justin, I think you've got it.
Advocate, I've seen other people make similar comments.
Ruth, Advocate is referring to Facebook. Without dates it's difficult to know when the CAA web site articles are written. I wish they'd change that.

 

[Roy S]

Since I posted the article about the canceled congressional oversight hearing, the CAA has posted video of the Senate CFS briefing done last year. Well, I suppose it could have just been a coincidence... So how many people in the general population would be confused because they don't understand the difference between a briefing and a hearing? And how many CFS patients with their neurological symptoms would be confused even more? All of them?

I did a Web search to try to find an explanatory definition of a briefing and couldn't find one, but the first result was a Senate briefing on Intelligent Design. A briefing isn't all that hard to set up. It can be useful to try to inform people if you do it right and can get folks to show up, but it's definitely not an oversight hearing. The CAA web site says that briefing was a unique opportunity, but they did one in 1995. It says the 1995 briefing was the first one, but the first one was 20 years ago which was years before the CAA took over Washington advocacy.

The only way to judge the effectiveness of advocacy is by results, and federal activities have gotten to an incredibly bad state of affairs. Hopefully the XMRV news will change that. I'm encouraged that the WPI was set up as an independent organization and has been working with the NIH instead of wasting time with the CDC, etc..

After some other things I wrote, it also may be just a coincidence that a CAA board member wrote on the CAA Facebook fan site that he is a loyal person. I wish everyone could differentiate between responsibility to all patients and the patient community; and loyalty to a person. I think we all deserve the best possible leadership.

I have been privately contacted by people with long term experience in CFS advocacy. While those communications are confidential, I will say that people more than agree with things I have written about the CAA. It's far more than sad that things have worked out this way. It didn't have to be this way, and it could be changed.

But when I see the CAA now state "The CFIDS Association of America has taken a commanding leadership role in research." " We’re repositioning CFS as an important policy issue for lawmakers and policymakers.", it doesn't give me confidence. It sounds like the expensive "Rebranding CFS" campaign. I've had enough spin and hype.


Whether the new retrovirus research pans out or not, there will eventually be helpful treatments available. When enough people have sufficiently improved health, other organizations will do more of the things that patients need. That will certainly be welcomed.

 

[Advocate]

This is the first section of a longer article I have been writing for some time about advocacy. I suggest you read it all on the CFS knowledge center web site. It may be easier for some people to read there, and all the links are clickable. This is the URL for the post there:
http://tinyurl.com/ya5erg7

Hi Roy,

The tinyurl didn't work for me. Would you please try again, perhaps with the complete url.

 

[Advocate]

Dear Advocate [Re: Disappointed]

By CAA do you mean the CFIDS.ORG site? If you click on What's New? on the left you go to a page where it is the first item and if you click on more...here you get the following:

http://www.cfids.org/temp/xmrv-press-release-oct09.asp

That's a lot of clicking to get the most important news that patients have received in many years. I'm sure they didn't intentionally bury it, but they certainly did not give this news the kind of prominence it deserved.

I clicked on "What's New" (listed among many items in the vertical navigation column) and it took me to a page where XMRV was mentioned in the second paragraph. At the end of the paragraph there was a link to their press release, which I clicked.

In the press release was a link to a statement from the CAA board. Another click.

 

[Roy S]

Advocate, thanks for pointing that out. I don't know what changed. I edited the first post.

http://cfsknowledgecenter.ning.com/forum/topics/unknown-cfs-congressional

geez, this is embarrassing.

 

[Jessrose21]

Roy, the CAA has posted on Facebook, in reply to "Mac Angel" that there never was a congressional hearing scheduled! Then that post was curiously buried immediately by Dawn Twaiten Nanof and Sue Moore who each posted multiple times in a row. It just seems fishy to me.

Either there was a hearing scheduled, or there wasn't. That's a matter of historical fact, not opinion or viewpoint. Where was this info recorded so we can prove it?

Thanks,
Jessica

 

[Roy S]

Jessica,
I saw that, and I'm going to wait a while longer to write a good response. You saw a good example of spin.

 

[Jessrose21]

Jessica,
I saw that, and I'm going to wait a while longer to write a good response. You saw a good example of spin.

Aha. Thanks for responding. I'm trying to sort all this stuff out in my foggy brain! I'm reading Osler's Web, but it's slow going, and I get so darn mad that I have to keep taking breaks from it.

Just as a general statement to those who don't want to dredge up old history: IMHO, yes, we need to move forward with XMRV, but justice must be served and people who did wrong must be held accountable.

 

[greybeh]

Osler's Web

Also reading Osler's Web. I think when they gave me the book from the library, my eyes were bulging out.

Years ago, I wouldn't have flinched at the size of it. It is a very enlightening read and I'm not even far into it.