Article: Retiring CFSAC Patient Rep Rebecca Artman Talks

You can view the page at http://www.forums.aboutmecfs.org/content.php?125-Retiring-CFSAC-Patient-Rep-Rebecca-Artman-Talks

 

Wow, Rebecca is inspiring!

This is a great article, Cort, thanks for doing the interview.

 

Thanks Sasha - she is a very strong, kind of behind the scenes worker - very committed to making a difference obviously :victory:

 

I learned so much from this article. Both questions and answers were well thought out and informative.
Rebecca is inspiring. She has shamed me into rethinking some of my "I'm too sick to advocate" beliefs. Thank you Cort.

 

Wow, I didn't know anything about Rebecca until this article, she is amazing. Thank you for the inspiration, it re-energizes me that each one of us can make a difference!

 

There's just alot we don't about how to do stuff like this. I think collectively we have alot of, I hate to say the word, 'energy' -certainly alot of passion - but its hard to know how to channel it. This interview was done prior to XMRV showing up and prior to the Forums showing when things were pretty humdrum on getting people interested.

Aftermath was adamant that we put the Advocacy forum near the top and I expected it to languish - but its been one of the most popular forums!

 

I'm really grateful to Rebecca and all she's done for us. This is an excellent interview, Cort. You did a great job. It was very informative and I learned a lot.

I wish there was more education happening about PWC who are severely ill. Many of us would be there on the hill if we could be. We need to be believed by our own about this situation.

The CME materials Rebecca gives her doctors do those of us who are severely ill a great disservice as you know because they promote CBT and GET as treatments for our illness. It seems that some people think they are okay for PWC who have a milder case or are in a milder stage of this illness.

ETA: I think some people think those materials are okay for PWC who are mild. I haven't changed my position on this. I want CBT and GET removed from them and I am very concerned that doctors will not understand the situation we are in and could harm us.

starry

 

I'm really grateful to Rebecca and all she's done for us. This is an excellent interview, Cort. You did a great job. It was very informative and I learned a lot.

I wish there was more education happening about PWC who are severely ill. Many of us would be there on the hill if we could be. We need to be believed by our own about this situation.

The CME materials Rebecca gives her doctors do those of us who are severely ill a great disservice as you know.

They're fine for PWC who have a milder case or are in a milder stage of this illness.

starry

They're fine for PWC who have a milder case or are in a milder stage of this illness??? StarryEyes, please take those words back. They're not fine for any of us and you've gone to a lot of trouble to prove that.

 

Lily,

The consensus on the CAA thread seemed to be that the CME materials were fine for those PWC who are more mild. Either they are or they're not, but that seemed to be the one thing we all could agree on.

Personally, I wouldn't give them to my doctor now that my CFS is so much worse and because now I have a different viewpoint about them but in the past when I could work I would have as Rebecca did and I was trying to see it from her point of view.

Cort thinks they're fine and he's even said that the CME by the CDC are okay for PWC who aren't that bad off.

I'm trying to be diplomatic. Clearly, even advocates are giving them out to their doctors as Rebecca said she did.

I mean no disrespect but I did want to mention that they are harmful for PWC who are in severe stages. That's what we all agreed on so that's where I was coming from here. I wasn't trying to cause that argument to come into this thread. I felt it needed to be said because even though those materials didn't cause a problem for Rebecca with this doctor, they can cause problems for other PWC who are worse off or, could be bad news if given to the wrong doctor.

Yes, I want all references of CBT and GET removed from the CME for all of us because I think they can cause harm to any of us but that's what I think, others here have made it clear they disagree and I wasn't trying to take that up with Rebecca and Cort here.

I reworded it because I think I'm being misunderstood. I'm sorry about that.

Also, I thought this interview was current when I wrote this but I just went back and saw that Cort said it was before XMRV was discovered. We were both posting at the same time.

Cort, aftermath was really right about that! This is the kind of stuff we need to know. It sure makes me wish I could get out there and do more to advocate for us.

 

The CME does recommend 'CBT' for all patients. If you look at the CME you'll several 'case studies'; in most of those case studies CBT is not recommended but in one it was. I wish we could get away from those words altogether; as the CME noted there are several different type of CBT and they did not recommend those types focusing on psychological issues but did - for some people - recommend therapies focusing on pacing, relaxation techniques, sleep hygiene, etc. They also are clear that none of these techniques could be considered cures; instead they more management tools designed to bring about a bit quality of life.


What was missed in the discussion of the SPARKS document was that it did, for first time, portray CFS as a serious disorder - and that did help. The Vermont group, for instance, was finally able to the New Jersey Consensus manual adopted by New Jersey because the new wording on the CDC website convinced lawmakers and doctors that CFS was a real and serious disorder.

 

I think the NIH is really trying to help, and I truly believe that Dr. Eleanor Hanna is the reason we have any most CFS funding from the NIH. She is a real champion for this illness. I dont know that I can say the same for the CDC.

Rebecca,

Why do you think this? I don't see how we could possibly get less funding from NIH and Dr. Hanna's attitude seems far short of supportive. Very interested in your perspective as you were close to the action.

Cort- could you get me in touch with Rebecca somehow?

 

What was missed in the discussion of the SPARKS document was that it did, for first time, portray CFS as a serious disorder - and that did help. The Vermont group, for instance, was finally able to the New Jersey Consensus manual adopted by New Jersey because the new wording on the CDC website convinced lawmakers and doctors that CFS was a real and serious disorder.

This is true and has made a significant positive difference for us, imo. Personally it has for me and a couple of others I know in person locally.

 

random points

Now that a retrovirus has been associated with ME/CFS, certain quotes from Rebecca's interview (done before XMRV news broke) jump out at me:

Were not refuges, the illness isnt an STD, were not cute. Watch And the Band Played ON and see how the AIDS community changed thing. Thats what we need to do. When they had Advisory Committee meetings the room was packed. I dont think we had more than 10 patients in the room at one time at the last dozen CFSAC meetings...

Because were not like AIDS patients were not dying in droves its more difficult for us. If people with HIV werent dying wed still probably not know what causes AIDS. One staffer on the Hill actually told me that this disease doesnt matter because its not sexually transmitted...

Of course, thus far the retroviral link doesn't seem to have helped us much, if the Holmberg/ Unger speeches at CFSAC are any indication.

Re CBT she said,

The NIH responds to the number of grants they receive and those grants reflect researcher interest. If, for instance, 90% of the grants are for cognitive behavioral therapy (CBT) and those are the best written grants, those are the ones that will be funded. The CDC spending on CFS remains a mystery to me.

This reinforces Dr. Bell's lament in his plea to raise funds for WPI; he said, "Huge amounts of money are spent on studies on cognitive therapy..." If CBT studies comprise the bulk of treatment research, it's no surprise they've also generated the bulk of results. And unfortunately, the CAA has backed a lot of that "data", even if it comes from studies that use the Oxford Criteria or are flawed in other ways.

Of the IACFSME, Rebecca said,

Ive also been trying to convince them that they need a paid Executive Director. As our professional organization theres so much they could be doing but right now theyre an all volunteer organization staffed by already very busy people. Theyve agreed to hire an Executive Director if I can come up with the money. So one of my next projects is raising about $50,000, if you have a few thousand dollars you would like to donate to this project, please contact me at pandorarebecca@aol.com.

$50,000...now that sounds about right for the salary of an advocacy group's director!

Hey Rebecca--thanks for all your work on our behalf! :Retro smile:

 

Sure Justin. Dr. Hanna is either locked in an impossible position or she's not the woman for us. Either way its not working.

I would note that huge amounts of money have indeed been spent on CBT but not in the US. Most of the studies are in UK and Europe. The US, on the other hand, has focused much of its attention on the physiology. Of course the CFIDS Association has never spent a dime on it, is spending alot of its money on physiological research and the vast majority of the CME was not on CBT