The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Article: CFIDS Association Of America Interview with Jennifer Spotila

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 27, 2011.

  1. jspotila

    jspotila Senior Member

    I wonder if it would help to define the word "advocacy"? I think we might be using it in different ways.

    To me, advocacy is advocating a position that will help CFS patients. The Association has chosen to focus its advocacy on increasing public, private and commercial investment in high-quality CFS research. To that end, we spend money on government relations representation to help us craft our message to policy makers and then take that message to the policy makers themselves. Example - getting CFS listed as a fundable disease in the Congressionally Directed Medical Research Program at the Department of Defense. To accomplish that, we wrote proposed budget language and then went to the Congresspeople necessary to convince them to put the language in the budget. We succeeded.

    Another way the Association advocates is by participating in the Blood Working Group, AABB Task Force, and the Steering Committee for the NIH State of the Knowledge Workshop. In all these venues, the Association advocates for high-quality research, provides policy makers with the information they need about CFS to recognize it as a real, debilitating disease, and offer our expertise to support the NIH conference to help make it a top-notch exchange of ideas and science.

    There are many other ways to advocate. The Time for Action Campaign is only one example. Bob, Rivka and Charlotte did a great job with that. Those types of efforts are very important, not only in getting the attention of the media/policy makers but in giving patients something concrete they can do despite our limitations. I can send an email (or a dozen) to Dr. Collins, but I can't go to Bethesda or DC to walk the halls and meet with policymakers. But someone still DOES need to walk those halls, and speak to policymakers with the urgency of our message and in the way those policymakers will get it.

    I firmly believe that we need multiple approaches to advocacy. We do need grass roots, flashmob type action. And we also need targeted approaches that will convince policy makers to do what we need them to do. These approaches are not mutually exclusive, and they are all forms of advocacy. So why can't we combine our efforts, and support all the ways of advocating? I think that if we could do that, we would create a powerful left-hook, right-hook knockout punch.
  2. justinreilly

    justinreilly Senior Member

    NYC (& RI)
    CAA has done some good things with advocacy- for example the DoD listing as you mentioned. I'm definitely not against targeted advocacy. I would just tweak some of what you are doing and do more of it. Some great messages have come from Ms. McCleary and at least one from Dr. Vernon. on the whole the messages have been uneven, but i think they're really going in the right direction. i would just make those good messages the norm and draw more attention to them. ie typically they are either delivered to a committee or posted on a back page of the website with a link in the monthly email and maybe a link from the front page. i think we would gain a lot from making these demands and critiques more visible- press releases, posting summaries on the front page with a general summing up of the horrendous situation we've been put in on the front page, stronger language and critiques when talking to the press etc. obviously, the ME name issue is also big.

    i don't agree that different people should go off and do different things. we have very limited resources and are in a horrible plight. we need laser like focus from everyone on leveraging our resources to make the hugest possible impact. caa is in the best position to do this, so i feel that they should, especially since it seems like a lot of patients really want this and caa bills itself as being a 'cfs' patient org.

    thanks for considering
  3. Cort

    Cort Phoenix Rising Founder

    Agreed, agreed, agreed, agreed! :cool:
  4. Cort

    Cort Phoenix Rising Founder

    I like that one-two punch

    The CAA may not be transforming how the NIH or Congress sees CFS but they are walking those halls...and they walk them every year...and they spend a good chunk of money to walk them with a lobbying group (that presumably knows what they are doing)and they are, besides Annette Whittemore and Marly Silverman, the only ones that do that I know of. I know funding sucks and it has gotten worse...but they got us in the Congressional Defense funding, they got Harry Reid to put pressure on the CDC, they're in the BWG, they've met with Dr. Anderson at the Office of the Director, Suzanne Vernon does go up and brief officials up there.... if we can get the 1-2 punch they are set up to help us deliver. That is something....
  5. raven


    Where did you get your figures from Cort, they don't reflect the 2009 data from the IRS 990 forms GuideStar and Charity Navigator use? (The CAA had an income of 1.9 million in 2008 btw)

    You neglected to mention that CAA ended 2009 with a 439,294 deficit, more than double that of the WPI.

    CAA 2009 Revenue $1,161,591 Expenses $1,600,885 Deficit 439,294
    WPI 2009 Revenue $1,105,595 Expenses $1,306,792 Deficit 201,197

    CFIDS Association of America
    11 employees, 1 volunteer

    CAA spent 394,913 on top 3 salaries which equated to 34% of their total revenue
    (Part VII, p.7)
    Kim McCleary, President & CEO 170,195
    Suzanne Vernon, Scientific Director 139,255
    Kristina Hopkins, CFO 85,463

    from CAA 2009 Expenses (part IX, p.10)
    Compensation of officers, directors, trustees & key employees 309,450
    Other salaries and wages 272,110

    Whittemore Peterson Institute for Neuro-Immune Diseases
    6 employees, 20 volunteers

    WPI spent 185,000 on 1 salary in top 3 which equated to 17% of their total revenue
    (Part VII, p.7)
    Peggy Sullivan, Secretary 0
    Annette Whittemore, President 0
    Judy Mikovits, Executive Director 185,000

    from WPI 2009 Expenses (part IX, p.10)
    Compensation of officers, directors, trustees & key employees 185,000
    Other salaries and wages 329,786

    data from 2009 IRS 990 forms available at
  6. floydguy

    floydguy Senior Member

    A CFO? Is that really necessary? It seems the CEO should do most of the financial heavy lifting and maybe an admin to do the clerical stuff. Is there a Director of HR too? And Director of Operations?
  7. Otis

    Otis Señor Mumbler

    Maybe it's just me but that's what I expect to happen. 20 years and zippo, nada.

    Sounds like they need to leave the halls and step into an office or two. Seriously. At what point are tanglible results expected? How much money is being payed to walk the halls? I think I saw a number of $150K year for lobbying. What's that bought except a really, really nice yacht for the lobbiest named "Goodship CFS"? Really - trust us YOUR ships going to come in too. If you live long enough. Maybe.
  8. Cort

    Cort Phoenix Rising Founder

    Thanks Raven...I just took a look at the top page

    Didn't know about the deficit for the CAA (didn't look); otherwise I think our figures matched up - $550,000 in salaries overall for WPI with zero salary for Annette, no surprise there. I see the WPI raised $600,000 in govt grants...good for them; $324,000 in fundraising and $287,000 in contributions. It's amazing how much is in here....They had lots of legal expenses - $227,000 - I imagine a one-time deal, spent $113,000 in lab supplies.....

    Over the past three years gifts, grants and contributions ranged from 436k to 1.8 ml to 1.2 ml....I assure you Phoenix Rising's first 990 is going to be much simpler :)
  9. Cort

    Cort Phoenix Rising Founder

    Actually alot of things have happened for such a small organization. The CAA played important roles in the GAO investigation of the CAA, they got CFS its own disability ruling - which I've been told is a rarity for diseases; CFS has its own (or close to its own grant review panel (FM is in there)) - another rarity, it also has its own federal advisory committee (ANOTHER rarity) - so the CAA has actually done alot with a little on Capitol Hill. I grant that others were involved but CAA almost had to have been the major player in each of those - given the lack of strong other organizations in CFS.

    I also grant the last ten years have seen less progress in Capitol Hill but the CFSCC got turned into a full advisory committee (CFSAC) and the CAA fought efforts to get it removed (I was there). The CAA has also consistently gotten language inserted in Appropriations Bills. That hasn't gone far but it's my understanding that it's a necessary first step. The CAA just got CFS inserted into the Congressional Defense Medical funding - a good move since CFS is so close to GWS. They also got Harry Reid and a congressman to support their efforts in uncovering the dirt on the CDC. We don't know why Dr. Reeves was fired but I imagine the financial problems the CAA uncovered during their investigation had something to do that..since that was the only new information that came out - and he had survived everything else.

    I don't know if that's too little and I may be missing stuff - but I'm happy for everything in the above paragraphs. Apparently the donor who is providing the 100k is happy with the results. I imagine anyone who provides that kind of money has some kind of idea what it's worth....
  10. urbantravels

    urbantravels disjecta membra

    Los Angeles, CA
    2009 figures from WPI aren't going to tell us much about the current state of affairs, since so many things happened in 2010, including the move to the new building. In 2009 it was much more of a shoestring operation in a semi-borrowed lab.

    $150,000 is chump change in lobbying terms. It's pocket lint. Compare for instance the National Multiple Sclerosis Society - $578k a year. Multiple Sclerosis Society&year=2010

    Or if you really want to feel depressed, look at what the American Cancer Society spends on lobbying - 3.7 million in 2010. Cancer Society&year=2010
  11. Otis

    Otis Señor Mumbler


    That's all good, BUT, I used that pesky word tangible. After 20 years are you suggesting I settle for "necessary first steps"?
  12. Cort

    Cort Phoenix Rising Founder

    Darn that pesky word......I would say we've made progress and it really hasn't shown tangibly for most of us..... agreed :D

    Never say settle.......
  13. jspotila

    jspotila Senior Member

    CFS is a problem as big and complicated as cancer. But the CFS community hasn't spent $3.7 million a year on lobbying. The Association has been able to spend only a tiny tiny fraction of that.

    When I hear comments like there have been no tangible results in 20 years, I ask two questions:

    1. If the CFSAC, GAO investigation, SSA ruling, CDMRP funding, new leadership at NIH and CDC, Lobby Days, and a consistent presence on Capitol Hill are not tangible results, then how are you defining "tangible"?
    2. How much do you think "tangible" results (defined in that way) will cost?

    And it is not just how much is spent on lobbying that produces tangible results on the Hill. Research is a KEY component of success. That's one reason why the Association has invested so much in research. We need research results to convince policymakers to make the appropriate investment in CFS research, and we need the appropriate investment in CFS research in order to get those results. The pocket lint (love that, UT!) resources for lobbying that we have had to work with is insufficient to break that cycle.

    XMRV has given us the opportunity to change the funding game. As I have said countless times, pointing fingers and complaining is a waste of time, especially now.
  14. Doogle

    Doogle Senior Member

    Hi Jennifer,

    Would you please explain what the CAA is doing about ICD-10-CM plans to move CFS to R53: Malaise and fatigue? See

    This has to be stopped as it would be a big step backward in our ability to get proper diagnosis and treatment. If this has already been addressed someone please link to the discussion.

  15. raven


    Re: CFSAC, check out CFS Untied's blog, specifically the repost of Pat Fero's report on NIH inadequate funding for CFS grants

    Pat spent years compiling a report of NIH spending titled, "Inadequate National Institutes of Health funding for New Chronic Fatigue Syndrome grants."

    She says, "CFS funding is the same in 2009 as it was in 1992" and concludes that, "Controversy and speculation shroud this field of scientific investigation at the NIH. A significant amount of CFS research money is spent on projects where CFS is not the primary focus."

    There is clearly more work that needs to be done to increase funding.

    Re: GAO investigation

    Check out OSLERSWEB's blog post titled "CDC Scandal" and the June 2000 GAO report to Harry Reid "Chronic Fatigue Syndrome CDC and NIH Research Activities are Diverse, but Agency Coordination is Limited"

    The work was done under the previous administration of Marc Iverson who resigned in 2001. His resignation letter is at

    Re: SSA ruling

    It was recognized 4.30.99 but isn't a well established disability claim to my knowledge. I wonder how many people have been able to qualify for disability using CFS? I had to settle using the diagnosis of FM even though Jim Jones diagnosed me with CFS in 2001.

    Re: CDMRP funding. It's not a done deal, it's an initiative.

    "One of our advocacy initiatives for 2010 will be to seek inclusion of CFS in the Congressionally Directed Medical Research Program (CDMRP) funded by the Department of Defense. To be successful, we'll need to demonstrate the impact of CFS on the warfighter."

    Re: new leadership at NIH and CDC

    The CAA isn't solely responsible for these changes, the CFSAC and IACFS/ME as well as other organizations and frustrated patients took aim at him. Most aren't happy with the choice of Dr. Beth Unger to replace him either, I saw her referred to as Reeves 2.0.

    Re: research

    The CAA announced 6 new studies for 2009

    Dr. Gordon Broderick was to "study adolescent patients who became ill with CFS after contracting infectious mononucleosis" "By studying the immune and endocrine response in patients from the time they get infectious mononucleosis to the development of CFS and through the first 24 months of illness, the researchers hope to identify biomarkers for early disease and for disease progression."

    Instead, he published a paper recalibrating the 'fight or flight' syndrome. "Model-Based Therapeutic Correction of Hypothalamic- Pituitary-Adrenal Axis Dysfunction" Amos Ben-Zvi, Suzanne D. Vernon, Gordon Broderick

    Dr. Kathleen Light was approved to "try to uncover the mechanisms involved in the chronic pain that afflicts 40%-70% of CFS patients" She was expanding observations from an earlier study, this with a larger group of CFS patients. Post-exertional fatigue and pain in CFS was deemed "groundbreaking" when in reality, it's been well documented for years.

    Her study, "Moderate exercise increases expression for sensory, adrenergic and immune genes in chronic fatigue syndrome patients, but not in normal subjects" Alan R. Light Andrea T. White, Ronald W. Hughen, and Kathleen C. Light infers, "we cannot yet conclude that gene expression changes in these measures after mild or moderate exercise are specific biomarkers for CFS"

    Dr. Marvin Medow was to "investigate whether increased pooling of blood in the abdomen of CFS patients results in reduced cerebral blood flow"

    His study, "Decreased upright cerebral blood flow and cerebral autoregulation in normocapnic postural tachycardia syndrome" Anthony J. Ocon, Marvin S. Medow, Indu Taneja, Debbie Clarke, and Julian M. Stewart was another study on POTS, long associated with CFS. "Postural tachycardia syndrome (POTS), a chronic form of orthostatic intolerance, has signs and symptoms of lightheadedness, loss of vision, headache, fatigue, and neurocognitive deficits consistent with reductions in cerebrovascular perfusion."

    Dr. Bhubaneswar "Bud" Mishra is working on a "Google for CFS" project.

    Dr. Sanjay Shukla and his team "are using metagenomics to determine if the ratio of good to bad intestinal bacteria in CFS patients is altered, and whether this imbalance in gut bacteria may be responsible for triggering CFS symptoms."

    I was unable to locate any studies related to his grant.

    I found this 9/2009 study, "Infective Endocarditis: Rationale for Revised Guidelines for Antibiotic Prophylaxis" Prabhakaran P. Gopalakrishnan, MD, Sanjay K. Shukla, PhD, and Tahir Tak, MD, Ph.D, FACC

    Infective Endocarditis is described by the American Heart Assn. as, "an infection of the heart's inner lining (endocardium) or the heart valves."

    He and Drs. Gopalakrishnan, and Tak have a letter published in the July 2010 Clinical Medicine & Research titled, "Antibiotic Prophylaxis and Anaphylaxis"

    Dr. Dikoma Shungu "will build on a preliminary study showing that brain fluid of CFS patients contains significantly elevated levels of lactic acid, or lactate, a substance important in metabolism." "If this study is successful, brain lactate levels could provide an objective diagnostic biomarker for CFS and evidence of a metabolic problem in these patients."

    His 2009 study, also funded by the CAA, "Ventricular cerebrospinal fluid lactate is increased in chronic fatigue syndrome compared with generalized anxiety disorder: an in vivo 3.0 T (1)H MRS imaging study." Mathew SJ, Mao X, Keegan KA, Levine SM, Smith EL, Heier LA, Otcheretko V, Coplan JD, Shungu DC was followed in 2010 by "Increased ventricular lactate in chronic fatigue syndrome measured by 1H MRS imaging at 3.0 T. II: comparison with major depressive disorder." Murrough JW, Mao X, Collins KA, Kelly C, Andrade G, Nestadt P, Levine SM, Mathew SJ, Shungu DC.

    The abstract says, "Ventricular CSF lactate was significantly elevated in CFS compared to healthy volunteers, replicating the major result of our previous study." and concludes, "Future (1)H MRS studies with larger sample sizes and well-characterized populations will be necessary to further clarify the sensitivity and specificity of neurometabolic abnormalities in CFS and MDD."

    Re: your statement, "XMRV has given us the opportunity to change the funding game."

    The CAA announced on it's website, "With the publication of a study in the journal Science, on Oct. 8, 2009 linking CFS to the retrovirus XMRV, the Association immediately began coordinating researchers who requested assistance to develop critical validation studies. The first study from another research group in the U.K. reported negative results on Jan. 6, 2010 and two other negative studies followed on Feb. 15 and Feb. 22, 2010. The Association provided analysis of these studies, which should not be considered valid replication efforts because of different case selection and lab methods used."

    Soon thereafter, Suzanne Vernon posted the now infamous "Playing A Weak Hand Well" at which spawned outrage on their Facebook page and was the subject of several blogs.

    To this I'd like to say that XMRV has given the WPI and other credible organizations an opportunity to change the funding game. I don't believe the CAA is up to the task. In response to your remark, "As I have said countless times, pointing fingers and complaining is a waste of time, especially now." It makes you and the CAA sound condescending and arrogant. I believe criticism will pressure them to change their ways or continue to lose grant money, patient support and credibility.
  16. Glynis Steele

    Glynis Steele Senior Member

    Newcastle upon Tyne UK
    Thought I'd mention that d-lactate will be tested in CFS patients through a study in Australia, following up on the KDM/Sheedy paper, where they found an increase in d-Lactate producing bacteria in stools of CFS patients. The study is due to start later this month. D-lactate is caused by a gut bacterial overgrowth, however it is usually only seen in short bowel patients, and treatment is through a GI, who monitors the d-lactate level and treats with abx, IV sodium bicarbonate and low carb diet. Healthy humans are not meant to have d-lactate.

    D-lactate crosses the BBB, and causes neurological changes that are said to be strikingly similar to CFS.

    If anyone wants further info, let me know, and I will send some links.

    Glynis x
  17. Cort

    Cort Phoenix Rising Founder

    But Raven - look at what you're doing - your entire post is directed to pointing out problems....You say Broderick didn't publish on that grant - that study you referred to had nothing to do with the grant...It was another study entirely.

    Light -
    - it wasn't the existence of PEM that was so startling it was an entirely new way of documenting it and yes, those graphs and findings were very startling. The question, for me, is - why would you want to dismiss something like this. You're missing the forest for the trees IMHO. In your eagerness to get at the CAA - you're mischaracterizing a potentially very important study. (OF course they can't infer that's it a biomarker - because it hasn't been validated..

    You are pointing fingers....- and not very well with the research work by the way....(which is why I think you're doing that)..the question whether they have already found a biomarker is small potatoes relative to the findings of the study...but that is what you focused on........

    I say support the good work of both the WPI and the CAA. I say let it be alright or the CAA to do good work in the areas they do good work and critique them in other areas.
  18. raven


    Cort, I set out looking for tangible results the CAA has accomplished based on what Jennifer stated in her post. Using your analogy, I looked at several trees in the forest CFSAC, GAO investigation, SSA ruling, CDMRP funding, new leadership at NIH and CDC and the 6 research grants. The state of the trees determines the health of the forest right? [​IMG][​IMG][​IMG]

    The CAA posted information about the research grants, interim updates and recently published CFS data on their website.

    "The Associations funded teams have provided interim updates and four groups have recently published CFS data. Here are some links to stories about these studies:

    Dr. Gordon Broderick 
Recalibrating flight or fight 
Model-based therapeutic correction of HPA axis dysfunction

    Dr. Kathleen Light 
Blood Biomarkers: A Light at the end of the tunnel"

    Your comment was, "You say Broderick didn't publish on that grant - that study you referred to had nothing to do with the grant...It was another study entirely."

    Bingo! I found it odd that the interim updates and 2009 publications were unrelated to his grant. I searched the NCBI database for relative studies and didn't find any.

    Regarding Kathleen Light's study (which I never dismissed btw)

    You said, "the question whether they have already found a biomarker is small potatoes relative to the findings of the study...but that is what you focused on"

    I evaluate research based on objectives and outcomes. The title of the study was, Moderate exercise increases expression for sensory, adrenergic and immune genes in chronic fatigue syndrome patients, but not in normal subjects and the findings, taken from the study, say, "we cannot yet conclude that gene expression changes in these measures after mild or moderate exercise are specific biomarkers for CFS"

    Research is evaluated and criticized all the time. I talked about the nature of the grants using statements from the CAA and the research that's been released. The results are quoted from the papers themselves. You see it as pointing fingers... pointing out problems. I see it as pointing out data. :thumbsup:
  19. CBS

    CBS Senior Member

    First, I'd like to see a lot more funding (and a much more open mind) directed at the WPI. They appear to be sitting on too much not to have it peer reviewed.

    As for the work by the Lights' that is funded by the CAA, the CAA "seed money" seems to be doing the trick but their work was put on hold as some of the major pharmas were waiting to see if XMRV was going to pan out quickly (which might have made the Lights "biomarkers" obsolete before they were even validated - clearly the XMRV puzzle is taking too much time - it should be noted that the Lights are involved in XMRV research with Dr. Singh as well).

    I can assure you that the Lights' work is once again moving forward and that sub-groups are being identified (presented at the OFFER Educational meeting on 2/2/11). Money is a major limiting factor for them right now (donate via - if you prefer, you can request that the donation be directed to the Lights or Dr. Singh or to research in general).

    As a general caveat, when we evaluate research it is essential to distinguish between peer reviewed findings published in respected journals (you don't get much better that Science and PNAS - not nearly enough ME biological research from any source) from public statements (and press releases - think The Welcome Trust). Public statements tend to win over patients but they have the potential to alienate "the establishment" (and I'm talking here about the Journals, not the CAA).

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