Tuesday, March 1, 2011

THE DEVIL MADE ME DO IT


Below is my response to CFIDS Association board member Jennifer Spotila's comments from yesterday.  Spotila was responding to my "Bad Company" blog post, particularly to my commentary on CAA President Kim McCleary's statement to CNN about the PACE trial.  McCleary told CNN:  “I think it would be challenging, at least in the U.S. system, to purchase the services that they've tested in this trial,” adding this:  The alphabet soup of acronyms that represent the interventions used in Britain is “just not something that our health care service offers, is reimbursable, or is really available here.” And, finally, this: “It's kind of a shame that we're still limited to talking about approaches to coping mechanisms as the only therapy that's available.” 

Spotila's comments are below mine.


Jennifer Spotila,

If McCleary hadn't made those comments to CNN, CNN wouldn’t have included those comments. No one held a gun to McCleary’s head or laid a cattle prod to her feet and forced her to utter those problematic remarks. She did that all on her own. Granted, it’s difficult to articulate a string of perfect quotes, but McCleary’s endorsement of cognitive behavioral therapy (CBT) and graded exercise therapy (GET) was inexcusable in my view and the view of many patients. After all these years, there is no excuse for defending these ineffective therapies.

Defending McCleary’s statements, you wrote: “Both reporters had also been prepped by the authors of the PACE trial to expect and dispute the objections raised by McCleary and other advocates to the study.”  Prepped?  Says who?  Jennifer, each side makes his or her case.  You’re an attorney.  Think of it like the defense and the prosecution in a murder trial. That’s how it works.  McCleary’s job was to make her points, not to endorse those of the opposing side.

Kim McClearly could have told CNN something like this:  “The PACE trial is problematic, and here are some reasons why. The selection process eliminated most bona fide CFS patients.  Instead, the PACE patients had idiopathic fatigue and depression. Cognitive behavioral therapy and graded exercise therapy are primarily helpful for those with idiopathic fatigue and depression, not those with Chronic Fatigue Syndrome. In fact, the hallmark of CFS is post-exertional crashing, so graded exercise therapy would make the symptoms of most CFS patients worse.

“Many patients with CFS are severely ill and suffer from seizures; swollen lymph nodes; fevers; autonomic dysfunction that makes it difficult or impossible to sit or stand; heart failure; immune dysfunction, including reactivation of herpes viruses; and rare cancers. Some patients are dying, others are consigned to a living death, and compelling evidence points to a newly discovered retroviral infection in these patients that’s similar to the one that causes HIV. 

"Despite its trivial name, this is not a trivial disease.  To suggest that patients can power through CFS through GET or CBT would be as incorrect as suggesting that those with Parkinson’s disease or multiple sclerosis or AIDS can be restored to health simply with exercise and a positive attitude.”

Jennifer Spotila, even if I had been on hallucinogens, I couldn’t have said something as unhelpful as what McCleary told CNN.

On another note, you wrote, “The Association did make changes to its website and operations in response to feedback we received through Khaly's postings and other venues.”  Khaly Castle posted a reply to you that said in her view there were no significant changes (see her response, below). Jennifer, I would appreciate if you would tell the readers of CFS Central what those changes were, and let the patients weigh in on their significance.

The CAA survey on the patient forum Phoenix Rising gives patients the choice of voting that the CAA is doing great, or needs some minor changes, or needs changes in direction, or needs changes in both direction and leadership.  So far, 143 out of 153 patients—that’s 93 percent—have voted for changes in direction and leadership.  I would argue that the CAA is doing poorly on the Phoenix Rising survey because it’s not representing what the patients want and need. 

Patients deserve better representation.  Patients deserve a CAA that strongly opposes the money spent on CBT and GET studies/treatment for ME/CFS. Patients deserve bona fide biomedical research, not this appalling, make-believe, psychoneurotic PACE study.  Patients, in my view, deserve an advocacy organization that actually advocates for them.

You wrote: “I strongly encourage you to balance your reporting on the advocate point of view by interviewing a diverse sample of us.”  Jennifer, I strongly encourage you to hear what the patients are saying and to stop defending the indefensible:  McCleary’s statements to CNN are inexcusable.

Jennifer Spotila's remarks:
Mindy, If you had contacted me, I would have been happy to answer any questions you have about the Association or the incidents you cite here. I did respond to Khaly Castle in 2009. The Association did make changes to its website and operations in response to feedback we received through Khaly's postings and other venues. 

Kim McCleary gave a very lengthy interview on PACE to CNN, and another to NPR. Both reporters chose to use only one quote from those interviews. Both reporters had also been prepped by the authors of the PACE trial to expect and dispute the objections raised by McCleary and other advocates to the study. Their questions to McCleary and the pieces they produced reflect this. 

I strongly encourage you to balance your reporting on the advocate point of view by interviewing a diverse sample of us. Reasonable minds can and do differ on many aspects of CFS advocacy. I continue to believe that dialogue serves us better than monologue.   

Khaly Castle's response to Jennifer Spotila:
Jennifer, to say that the CAA responded would be accurate. To say that the CAA responded in a meaningful way would be inaccurate. In 2009, a thread was started on Phoenix Rising. The discussion over there continues to this day, about basically the same issues.

After we tried to have a meaningful dialogue, CAA was asked to help us fight the DSM5 issues. The response was meager and meaningless, basically boiling down to the suggestion that we should go ask the IACFS/ME as CAA did not feel informed enough to take a stance. I notice the same conversation evolving regarding ICD codes right now.

Mindy already cited and linked to two of my articles voicing some of the concerns we had in 2009. We are still facing the same concerns...lack of adequate response to ill-defined cohorts in X-negative studies, inability to take a stand that CFS is NOT what the CDC likes to describe, inability to advocate for the sickest of us, inability to verbalize a distinction between this illness and the grab bag of fatiguing illnesses....on and on.

For more on some of these issues, see: http://www.cfsuntied.com/archivedblog4.html#caaxmrv
You will notice that not much has changed.

A few months ago, after the "Inside Voices" article was presented to us, I asked the CAA on Facebook if the CAA still considered itself an advocacy organization, or if it had decided to become a science and research organization. You answered, that they were indeed an advocacy organization, but that there were many ways to advocate. The conversation and surrounding events are documented here: http://cfsuntied.com/blog2/2010/10/07/be-vewy-vewy-quiet-im-hunting-wabbits/

This can no longer be about promotion of promotion. It has to be promotion of what will save us. Many of us are facing not only the end of our ropes, but the end of our time. The clock is ticking. 


FLIP WILSON on ED SULLIVAN: THE DEVIL MADE ME DO IT

26 comments:

  1. I agree. Mindy's response is BRILLIANT!

    I am grateful to you, Mindy, for answering the hot air of the CAA's vacuous statements with reason and common sense.

    Patricia Carter

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  2. Mindy...Great Job.

    I especially like the "historical" background presented through Kahlys' correspondence which clearly gave the CAA TWO YEARS to act on these issues. This is excellent historical and legal documentation.

    AS far as "misquotes and Soundbites" taken out of context in an interview...NOT BUYING IT.
    Standard Journalistic Procedure = McClearly could have written to the Media IMMEDIATELY after the article published to rectify any comments taken out of context.

    This is "plausable deniability" at its' worst.

    Why is McCleary on the Board and receiving an annual salary as a worker? Don't State 501C3 laws prohibit this as illegal?

    Why is McCleary saying this is now a research and institutional organization? Did they modify their 501C3 Papers with the States to reflect this? As such, this type of organization plans on building an "institution."

    Does Laura Hildebrand support this organization? She is our hero on so many Levels. God Bless her writing and perserverance. Laura, How do you feel about this? WE need your voice. Please.

    All 501C3's best have their t's crossed and their i's dotted. This is FAIR WARNING.

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  3. Yes I agree, brilliant reporting. Thank you Mindy and Khaly. To say you're misquoted or your quotes are taken out of context one time, fine. But time and time again Kim Mcleary's comments are totally off base and bordering on ridiculous. Sorry I'm not buying these excuses. She should be media trained and learn to keep her mouth shut if she doesn't want to be misquoted. And only speak on the record to points she wants to make. Might be good if any of those points represented us or spoke for change in advocacy.

    Love, Sita

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  4. Kim McCleary has had plenty of time to learn how media interviews work. It's not rocket science to turn the tables on the interviewer. These golden opportunities to educate the public are totally squandered by the CAA.

    Mindy, thank you for giving Kim a script to follow the next time she is interviewed.

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  5. Yes Ms Spotila, please tell us what the significant changes you refer to in your post were.

    The CNN interview represents yet another squandered opportunity by those whose mandate it is to help to communicate to public health agencies what a truly dire position people with this illness are in. As many have said in posts before, time is running out for the people who have been ill for many years. We're playing Russian roulette with this illness. The longer we go without treatment the less our chances of dodging the bullets of heart failure and cancers. We get to add that worry to the daily misery of trying to manage an unmanageable illness.

    Our position is dire Ms Spotila. Don't you realise that? We need your help. What we get are articles on CNN which appear to lament the lack of available resources to implement exercise therapies which are known to harm us, thereby cementing in readers' minds that this is a syndrome of laziness. After all this time and after the huge outcry over the inner voice debacle is this really the best you can do? If so, you appear (once again) hopelessly out of touch with the wants and needs of your members.

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  6. Thank you again, Mindy, for cutting right to the chase and hitting the critical nail on the head. This is the bottom line. If so very many people are unhappy about the way CAA is putting forth our illness, then if the CAA cares, it will say so by changing. By not changing, it is also making a statement...isn't it?

    But we are going into the decades arena now....so at what point do we stop waiting for change and just push you out of the way? Bad representation is MUCH worse than no representation. It's bad representation of our illness on the part of the CDC, NIH, AND CAA that has created the "life sentence" Kim McCleary likes to speak about. We have spent our lives, literally, waiting.

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  7. I'm confused. I came across a 2002 Smithsonian magazine article Betting On Seabiscuit - an article that comes out strongly in favor of CBT/GET and includes quotes from Wessely and an endorsement of CBT by Laura Hillenbrand (was this recommended by Dr. Fred Gill?).

    In this otherwise craptastic article, sandwiched between Wessely quotes is a surprisingly strong statement made by Kim (Kennney) McCleary:

    "But some patient advocates have criticized the behavioral approach, saying it trivializes the affliction as psychological in origin. Kenney, of the CFS patients’ group, cautions that patients can’t just exercise the disorder away and may harm themselves if they carelessly try to do so."

    She had it right back in 2002! So what happened? When did it change? Was it during those years that the CAA prostituted itself to the CDC? Was that when the UK Psych agenda started seeping into their educational materials and statements to the press?

    http://www.smithsonianmag.com/people-places/seabiscuit.html#ixzz1FPA27Xeu

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  8. Thank you, Mindy and Khaly! Very important points.

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  9. John Herd's new blogpost, if correct, sheds new light on the CAA's response to WPI. He claims they're no longer a patient advocacy org but have morphed into a clinical research outfit on the quiet. Furthermore, CAA has "reportedly been very aggressively speaking and acting behind the scenes to blackball WPI from meetings, government committees and grant funding. The only logical conclusion one can draw from this is that the CAA views WPI as a research competitor."
    http://johnherd.wordpress.com/2011/03/01/the-transforming-faces-of-the-cfids-association-of-america/

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  10. Mindy,

    I am wondering if you would be willing to be a media contact that patients can refer media to for comments on stories on ME and/or XMRV. I am going to put polls up on patient fora to see whom patients would like media to contact in general. you can contact me on mecfsforums.com. I post under my name there. Thanks.

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  11. I'll do my best to answer your direct questions, Mindy. You asked who said the reporters were prepped to be predisposed in favor of the PACE authors' comments. That is a conclusion we drew based on knowledge of the reporters involved, the types and even wording of the questions that they posed.

    You wrote your own version of comments to CNN. Kim McCleary's comments to CNN and NPR mirrored many of your points and are reflected in the written analysis of the PACE trial here:http://cfids.org/cfidslink/2011/lancet-study.asp

    You asked what changes were made in response to the feedback collated by Khaly Castle. The webinar series was augmented to include multiple sessions on XMRV, clinical perspectives from several CFS experts, and seminars on specific issues like OI, the case definitions, and Dr. Komaroff's fantastic talk on the evidence for infectious etiology. The FAQ page was created and regularly updated, and enhancements were made to our reporting on XMRV. The Board has used the multiple perspectives not only from Castle but many other sources to inform its discussions of research, public policy and communications. Patients' perspectives have a role in the boardroom, and our assessment of those perspectives has become more complex and reflective of the landscape post-Lombardi. I also made myself personally available to many more individual patients and organizations, both to listen and to share perspectives, and a number of issues/questions raised by patients were addressed in my written interview with Cort Johnson. My article series on post-exertional malaise (http://www.cfids.org/cfidslink/2010/pem-series.asp) - motivated by a need to collate current research and highlight this hallmark symptom - addressed the uniqueness of this symptom to CFS, the research proving that it is not of psychological origin, and evidence supporting pacing (not GET) as the best way to cope with the symptom.

    Thank you for this opportunity to address your questions.

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  12. I believe there is a courtroom maxim "Don't ask a question unless you know the answer". In PR there is an equally important concept. "If you don't say, it it can't be taken out of context."

    For all of her "experience" Kim McCleary is incompetent, or worse. I don't really care I just want her to stop talking. I wish that the CAA would indeed become a research organization because with advocates like these who needs enemies.

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  13. The CAA as a body is not overtly standing behind patients and leading campaigns for XMRV and other biomedical research, which is why patients have turned to forums and blogs. This says it all in my view. I for one am not getting the political support I am looking for as a patient at Canadian organizations, which is why I visit here and other on-line sources. Doesn't the CAA get that emergent new groups is sign of dissension? Better to stop defending themselves and start asking: How can I change?

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  14. Mindy, brilliant as always, and thanks for the historical perspective - I was too sick some of those years (totally bedridden in a dark room) to know what was going on. Once we get done with this mutiny, I think there may be a job for you as our representative to the press! -Jocelyn

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  15. I have to say, what is the point of the CAA? Their results (no results) speak for themselves. In comparison, in one year, Josh Fox - a kid from rural NY raised the issue of fracking for natural gas contaminating groundwater to the national stage. He almost won an oscar for his film and there is serious momentum behind his cause. In 30 years, what has the CAA done? If they have nothing to show, they should be dissolved and a new patient advocacy organization should be created. One that will actually advocate for the sick people it represents.

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  16. I wonder what Marc Iverson has to say about the whole CAA situation today. He founded the organization in 1987 and then left it in 2001.

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  17. I strongly agree with what you've written. Your example of what could have been said to the media was perfect. And what a world away it was from what our chief advocate actually said. Her position is untenable.

    Mark

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  18. I can't believe I'm actually going to use the same words as Gerwyn and WildDaisy, but here goes:

    Brilliant job Mindy!

    I used to support the CAA -- yes, they had some problems, but in general, I thought they overall did a good job. That is until McCleary made those ridiculous and inexcusable comments to CNN. Those specific comments are as you say, indefensible, as are Vernon's.

    And THAT's why the polls over on Cort's board show that 90+ percent want changes in direction and leadership at the CAA -- because of those idiotic comments. I think had the poll been taken a month or two back, the results would've been more favorable, more balanced.

    I appreciate the fact that they support not only the WPI's efforts, but other areas of research as well. It would be very dangerous and foolish to put all their eggs in one basket, as some commenters on your blog and other sites have done by insisting that all support should go to the WPI.

    Nevertheless, both Vernon and McCleary should resign, and the CAA should become much more interactive with the patient population.

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  19. Ms. Spotila,

    CAA needs another CEO, period. Mr. Herd's post and the comments are instructive. Ms. McCleary and her lobbying friends never put us first even before they muscled out Iverson, empowered a moral deviant, and sold themselves and us out.

    Aside from the CNN waffling, we didn't need after-the-fact essays dissecting why PACE doesn't apply to us. We know that. The most sickening part was calling PACE the new "gold standard," conveying Britain is loaded with CFS experts. Right.

    Ms. Spotilla, however you claim to have helped CAA change course, Ms. McCleary's "inner" voice and has made your improvements null and void. We can only conclude CAA is more interested in promoting Reeves-Wesseley Syndrome. Patients are rolling in their beds and graves.

    Stop trying to defend your boss. If this petition - let alone any denunciation along its lines - goes public in May, I don't know what all the fallout will be, but as far as who will look like total *****les, it'll definitely include McLeary and You. 'Best try to settle this matter before then.

    Patient-to-patient, if you're OK with having this for the rest of your shortened life, fine: don't take us with you.

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  20. The CFIDS Association published a summary of the CROI today, and linked it to their FB page. Dr. Suzanne Vernon was quoted as saying, "This seems to be a prime opportunity for scientists to put fractious politics aside, consider all the facts and keep an open mind before concluding that there are no diseases associated with XMRV."

    Patients Meg Carlson and Andrea Whittemore Goad were quick to point out that all facts can't possibly be considered if some opinions are excluded from being presented in the first place...like those of Ila Singh, Robert Silverman, and Maureen Hanson.

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  21. I also tried to post a reply to Jennifer's comments, but it got too lengthy to be able to post here. Please refer to

    http://cfsuntied.com/blog2/2011/03/04/but-wait-theres-more/

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  22. To echo the sentiment, BRILLIANT. You wrote, "McCleary’s endorsement of cognitive behavioral therapy (CBT) and graded exercise therapy (GET) was inexcusable in my view and the view of many patients."

    This course, for physicians and other heath care professionals is in the CDC's CFS toolkit.

    A Primer for Allied Health Professionals
    Renewal Date: 7.1.2009/Expiration Date: 6.30.2012

    Faculty and Credentials
    The following individuals are considered content experts for this activity:
    James Jones (CDC), Teresa Lupton (CAA) Kimbery McCleary (CAA) William Reeves (CDC) Vicki Walker (CAA-formerly)

    Chapter 3.1: Management of CFS
    •Features of Postexertional Malaise
    •Cognitive Behavioral Therapy (CBT)
    •Activity Pacing
    •Graded Activity and Graded Exercise
    •Strength and Conditioning
    •Pacing/Envelope Theory
    •Other Health Issues (Stress, anxiety and depression, Cognitive dysfunction, Coping skills)
    •Symptom Based Theories (Sleep, Pain, Other symptoms or conditions)
    http://www.cdc.gov/cfs/education/wb3151/chapter3-1.html

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  23. Ms. Spotila wrote "The FAQ page was created and regularly updated". It has just been updated since she wrote that here, but the previous update was June 7, 2010. Clever CYA, CAA.

    Ignore the hard questions and spin the rest.

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  24. John Herd was right. McCleary admits they are now a research org.

    http://www.cfids.org/cfidslink/2011/ftdo-march.asp

    Maybe John's also correct that the CAA has attacked the WPI behind the scenes, ensuring their competitor is denied access to conferences and funding.

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