Time for the Big Talk. How's the CAA doing?

[jspotila]

Clear as Can be

I might start to sound like a broken record, but everyone deserves to understand why I am here and how that relates to my membership on the CFIDS Association's Board of Directors.

At the risk of repeating myself from other threads, I think it is important for me to be very very clear. I am here as an individual who also serves on the Association's Board. I'm not here as an official go-between, although I am more than happy to be a conduit of information, questions, feedback, etc. I don't want my statements to be heard as official statements of the Association unless I'm actually making an official statement.

I am capturing questions, suggestions, requests, etc that I read on these forums, and I am passing them to the Board's new chair and our CEO. It is probably unavoidable that readers will have expectations about what the Association will do with the suggestions, and on what timeline. I cannot and will not make promises about this though, and I am trying to be very up front about that.

If _fresheyes_ (or anyone else) wants to volunteer or work for the Association in any capacity, please send me a PM. I can pass on a resume, or collect contact info for when the Association needs volunteers, or whatever else fits the situation.

I hope this clears up some of the recent confusion. I appreciate everyone's patience with me during the holidays and the end of my chairmanship.

 

[jspotila]

Materials on CBT, White, etc

I've been reading all the threads, including the discussions of healthcare provider education materials. I posted about CBT in the DSM-V thread:

http://forums.aboutmecfs.org/showthread.php?p=26614#post26614

 

[Dolphin]

I've been reading all the threads, including the discussions of healthcare provider education materials. I posted about CBT in the DSM-V thread:

http://forums.aboutmecfs.org/showthread.php?p=26614#post26614

(Thought I'd reply here as doesn't seem to be particularly on topic for that thread)

What is the evidence that CBT for CFS reduces pain? It is hard to remember all articles published but generally it is not something that is measured.

CBT may help pain in other conditions but that doesn't mean the form suggested for CFS (usually graded activity/exercise) will decrease pain in CFS.
The day after low-level exercise, pain levels increase in CFS.

Regarding:

Psychological factors are relevant to any illness process. CBT has been shown to help people deal with these factors and better cope with the life-altering issues of chronic illness. Awareness of the role that stress can play in exacerbating the symptoms of CFS is essential. CBT assists people to better recognize and manage the stressors in their lives.

Various techniques can help people cope with stress - one can do relaxation and other techniques without it being a CBT program.

CBT is Cognitive-Behavioral Therapy - based around changing unhelpful beliefs and thoughts. One can give management tips to people without it having to be CBT. CBT is a value-laden term - I think it's probably best if patient organisations avoid using it as much as possible or make clear they think it is only suitable for a subgroup of patients who might not be coping well with the illness, etc rather than all CFS patients.

In my view, many proponents of CBT for CFS have more inaccurate views about the illness than many patients.

The psychologist, Ellen Goudsmit, who is also a patient has many interesting articles on CBT at: http://freespace.virgin.net/david.axford/melist.htm

 

[mvwu]

I am capturing questions, suggestions, requests, etc that I read on these forums, and I am passing them to the Board's new chair and our CEO.

Jennie,

Thank you.

Would you also suggest to the Board members/senior staff that they read this thread and the other pertinent forum threads? Without firsthand exposure to the ideas presented by the fine minds here, they may not realize how much we members and patients have to offer.

 

[Khalyal]

Personally I think patient organisations should avoid using the D word (deconditioning) as much as possible especially in information to medical and health professionals. Deconditioning theories can very quickly taken over - as has happened the health systems in the UK, Belgium and the Netherlands. The Belgian rehab clinics had neglible effect on people's exercise tests and the people were working at the end and at follow-up. But still the clinics continue. As I say, deconditioning theories tend to stick.

It's too easy to think that patients problems are caused by deconditioning. I also notice some higher functioning patients can be a bit judgemental of more severely affected patients and can think their problems are due to deconditioning.

Very often these lower functioning patients are operating at their activity ceiling and the last thing they want to be told is that they need to exercise more.

http://www.eurekalert.org/pub_releases/2001-12/l-poc120501.php
Peter White comments: The predictors of a CFS after an infection differ with how CFS is defined and when it is studied, depending particularly on whether the patient also has a mood disorder. The particular virus causing the infection and the bodys immune reaction to it may play an early role, but physical deconditioning may also be important. By contrast, mood disorders are predicted by factors that predict mood disorders in general. More work is needed to understand how early post-infectious fatigue is caused by immune factors. This study also implies that CFS after infectious mononucleosis might be partially prevented or treated with an early and graded return to appropriate physical activity in order to prevent or treat physical deconditioning. It also suggests that post-viral mood disorders should be treated in the same way as any other mood disorder.

 

[Dolphin]

http://www.eurekalert.org/pub_releases/2001-12/l-poc120501.php
Peter White comments: “The predictors of a CFS after an infection differ with how CFS is defined and when it is studied, depending particularly on whether the patient also has a mood disorder. The particular virus causing the infection and the body’s immune reaction to it may play an early role, but physical deconditioning may also be important. By contrast, mood disorders are predicted by factors that predict mood disorders in general. More work is needed to understand how early post-infectious fatigue is caused by immune factors. This study also implies that CFS after infectious mononucleosis might be partially prevented or treated with an early and graded return to appropriate physical activity in order to prevent or treat physical deconditioning. It also suggests that “post-viral” mood disorders should be treated in the same way as any other mood disorder.”

I only read that study in the last year or two but it is rather annoying. How they measured physical fitness was the increase in heart rate walking up (and down?) stairs. The heart rate could have gone up because the person had orthostatic intolerance problems and for biological reasons (the person's body had still not recovered from the infection). They didn't measure the fitness of the person before they had the infection in that study.

In another paper in 2006, he, Buchwald and Smith suggest one can't trust the patients when they say they were on average active before they became ill (which is what they found in the questionnaires) - see my post, "Accumulating evidence that CFS patients were actually more active on average than controls before becoming ill" at: http://www.biomedcentral.com/1471-244X/6/53/comments/comments

 

[Martlet]

In another paper in 2006, he, Buchwald and Smith suggest one can't trust the patients when they say they were on average active before they became ill (which is what they found in the questionnaires)

Hmmm ... That's laughable.

 

[mvwu]

Question for JSpotila

Jennie,

It looks like the CAA is less dependent on member contributions than I had assumed in an earlier post.

From the CAA's Annual Report:

2008 Sources of Revenue
Excluding government grants for specific projects

Public Support $1,407,911
Membership Dues 118,672
Corporate/Foundation Gifts 37,702
Interest & Other 10,360
Material Orders 7,338
Total $1,581,983​

​

Can you give us some idea of what/who these other sources of income are?

 

[Dolphin]

I have skimmed the other thread and know now that what is being referred to is a late 2005/early 2006 document, which puts my mind at ease.

I got this document at the time and the Peter White piece did spoil it a bit. I didn't necessarily agree with 100% of the rest of it but it was the deal breaker that meant I was not interested in using the document to educate doctors in Ireland.

But I got the impression the CAA have learned and would hopefully not invite him to write a piece in the future.

 

[jspotila]

Jennie,

Thank you.

Would you also suggest to the Board members/senior staff that they read this thread and the other pertinent forum threads? Without firsthand exposure to the ideas presented by the fine minds here, they may not realize how much we members and patients have to offer.

There are other Board/staff members reading threads here, and I usually copy the text of posts to pass on rather than re-wording them. Hope this helps!

 

[jspotila]

I have skimmed the other thread and know now that what is being referred to is a late 2005/early 2006 document, which puts my mind at ease.

I got this document at the time and the Peter White piece did spoil it a bit. I didn't necessarily agree with 100% of the rest of it but it was the deal breaker that meant I was not interested in using the document to educate doctors in Ireland.

But I got the impression the CAA have learned and would hopefully not invite him to write a piece in the future.

The Association is well aware of White's views, and this is one reason we objected to his inclusion on the CDC blue ribbon review panel in 2008. I posted in another thread that the "White sidebar" appeared in an article in the Science and Research publication from 2006. Table of Contents and some articles available here:

http://www.cfids.org/special/default.asp

 

[jspotila]

2008 Sources of Revenue
Excluding government grants for specific projects

Public Support $1,407,911
Membership Dues 118,672
Corporate/Foundation Gifts 37,702
Interest & Other 10,360
Material Orders 7,338
Total $1,581,983​

​

Can you give us some idea of what/who these other sources of income are?

Are you referring to the "Interest & Other" category ($10,360)? I can look into that. And charityfundraiser asked:

Elsewhere on the annual report it said "Public Support - contributions and grants," so I'm wondering what the grants portion of Public support is exactly and how much.

I will double check on how the Association defines "grants" because I don't want my understanding to end up misleading anyone.

 

[fresh_eyes]

Hi j. One more question for you - how many members does the CAA have? Thanks.

 

[Dolphin]

The Association is well aware of White's views, and this is one reason we objected to his inclusion on the CDC blue ribbon review panel in 2008. I posted in another thread that the "White sidebar" appeared in an article in the Science and Research publication from 2006. Table of Contents and some articles available here:

http://www.cfids.org/special/default.asp

It is good that the CAA objected to his inclusion. I'm not sure I was aware of that. Not sure if that is public knowledge or not. I only started following the CFSAC meetings in 2009 but have read some of the reports from before that.

I posted in another thread that the "White sidebar" appeared in an article in the Science and Research publication from 2006. Table of Contents and some articles available here:

http://www.cfids.org/special/default.asp

The document is nice. For a patient who wouldn't be swayed, it was nice to see all the researchers and read the different articles.

But as I say, there was enough in it I wasn't happy with (particularly the Peter White piece) that I didn't want to circulate it to doctors in Ireland. But as I said, I've learned the reference to Peter White was from that late 2005/early 2006 document so at least four years ago. I think a lot of people in the US know a lot more about Peter White than they might have then.

 

[mvwu]

Are you referring to the "Interest & Other" category ($10,360)? I can look into that.

I'd actually like to know if the "public" category contains only donations from individuals. Thanks.

 

[Andrew]

The Association is well aware of White's views, and this is one reason we objected to his inclusion on the CDC blue ribbon review panel in 2008.

Yet you continue to promote his information to doctors. See http://www.cfids.org/sparkcfs/clinical.pdf.

BTW, my reasons for objecting to White is he is studying idiopathic chronic fatigue, and passing it off as if it's about CFS/ME. This is no different from someone studying anyone who coughs, and then claiming it's specific enough to make statements about tuberculosis. I explain more here: http://forums.aboutmecfs.org/showthread.php?p=27401#post27401

 

[jspotila]

Information on Revenue Categories

mvwu, charityfundraiser, and fresh_eyes asked a couple questions about line items in the Association's 2008 report.

2008 Sources of Revenue
Excluding government grants for specific projects

Public Support $1,407,911
Membership Dues 118,672
Corporate/Foundation Gifts 37,702
Interest & Other 10,360
Material Orders 7,338
Total $1,581,983

The "Interest and Other" category in 2008 was strictly interest from our banking accounts and the endowment held at the Foundation for the Carolinas.

The public support category includes any donation (either unrestricted or restricted for a specific program or project), internet royalties, workplace giving programs and foundation grants (i.e. 2008 Wayne & Gladys Valley Foundation grant earmarked for research). Grants account for a very small portion of our public support because most of the money we received from Foundations are really donations instead of true grants. The Valley Foundation has been the only "grant" where we have had to submit a proposal and periodic progress reports throughout the performance term.

As announced in the Spring/Summer issue of Solve CFS , anyone who donates $35 or more annually receives the print publication Solve CFS (which replaced The Chronicle format this year). Donations are fully tax deductible, as opposed to membership dues which are not deductible. The Board decided that eliminating the membership structure would also reduce donor confusion, reduce some back-end accounting work, and still allow us to deliver both print and electronic publications in the most cost-effective manner. This decision was made after a great deal of research into non-profit structure (membership-based and otherwise) and deliberation about what will maximize the Association's ability to pursue its mission on behalf of all people with CFS.

 

[jspotila]

Feedback shared by Khaly Castle

I would like to thank each person who took the time to send feedback, questions and comments to the CFIDS Association through Khaly Castle s blog and the ME-CFS community. I have read every single post that Khaly emailed me (almost 100 pages) with an open mind to hearing what you have to say. The passion and commitment each commenter brings to the fight against CFS is clear. There were so many questions, recommendations and comments that it is impossible for me to respond to each one individually. I have already shared summaries with the Associations CEO Kim McCleary , Adam Lesser (who will succeed me as chairman on January 1, 2010) and the Board of Directors as a whole.

I appreciate the opportunity to hear this feedback and to participate as a member of this forum. The Associations leadership values feedback from a wide variety of sources online, offline, direct, indirect and we hear from a wide variety of people affected by CFS about a wide variety of topics. We will continue to improve and evolve in how we gather and respond to diverse concerns expressed by members of the CFS community.

In specific response to many of the questions received from Khaly, we will be adding an FAQ-type page to our website that will be updated periodically as a means of sharing information about the Associations current activities with a broader audience than we can reach through this forum alone. I will try to post reminders here as that page is posted and updated. Other suggestions related to issues of structure and governance. We have modeled our governance and programs on best-practices established for nonprofits, while recognizing that the nonprofit sector is large and diverse and many successful models exist.

One of the most surprising themes that was evident by the questions posed is how much larger and mightier the Association appears to some people in the community than it really is. Our Board is comprised of 14 (unpaid) volunteers, each of whom has deep personal connections to CFS and the Associations work. Our staff is just 8 people, working from very modest office space in Charlotte , N.C. Based on the feedback I received, the expectations that the community has as a whole for a single organization, the CFIDS Association, are vast. If anything, its clear that the CFS community needs more organizations taking complementary approaches to the complex and interconnected challenges of CFS. The Association has collaborated with organizations representing CFS as well as overlapping conditions, and we will continue to do so in pursuit of our mission.

The Association Board and staff engaged in a lengthy and intense strategic planning process during the last two years. As announced in April of this year (http://www.cfids.org/cfidslink/2009/040101.asp), the Board adopted new statements of our mission, strategies and core values. All our work is guided by these statements, and we have drawn on this new focus in a variety of ways. We revamped our publications, initiated additional online communications strategies, engaged new government relations counsel, and expanded our research efforts. Individually and collectively, we at the Association strive to do our very best to make meaningful progress in the battle against CFS. We never give up and we never let up.

I look forward to continuing my participation in this forum, and will do my best (within my own physical limits) to provide information and address questions about the Association and its mission, programs and structure. There will (and should) always be differences of opinion in the CFS community about how to eradicate this illness and the shortest path to that goal. Debate and disagreement are not the enemy to progress, but an essential part of consultation and collaboration. We don't need to agree on everything, but we do need to work together so that no one else has to endure the devastation of CFS.

 

[Khalyal]

To Jennie

Thank you, Jennie. You have been absolutely stellar. I have really enjoyed the conversations that have been enabled by your participation.

I think the perception of the size and scope of the CAA has been a problem, and the call for more advocacy groups and grassroots advocacy is exactly right.

Just watching the people who have banded together here, and who are making real things happen, has been a delight. I am so proud of the tenacity and grit that the CFS community has.

Love to all, and big hugs to Jennie S!!
Khaly

 

[leelaplay]

I second that Khalyal! <<<<<>>>>>