Just the FAQs, ma'am

"The facts, ma'am. Just the facts."

The word "propaganda" has gotten a bad rap. In our century, it has come to mean unreliable information that is used to manipulate public opinion. (Originally, propaganda referred to the Catholic Church's efforts at "propagating" the faith.)

To a certain degree, the negative connotations are deserved. Those who wish to manipulate public opinion without going through the effort of supporting and legitimizing an argument often take short cuts. References are cherry-picked, poor rhetorical strategies are used, such as ad hominem attacks, and, in the worst cases, facts may be invented, data twisted, and outright lies presented as truth.

The post that appeared yesterday on the CAA website, "CFSAC Responds to Questions Concerning the Contract with the IOM" is not an example of the most disreputable form of propaganda - outright lies designed to inflame the public -  but it does fall into the category of manipulation.

Information or manipulation?

The practice of answering FAQs - frequently asked questions - is one which provides answers to questions of general concern. FAQs enable readers to identify common problems, and quickly find concise answers.

People in the ME/CFS community certainly have questions about the IOM contract. I know I do. In fact, if
someone were to ask me, right now, "What questions do you have?" I would be able to rattle them off in a heartbeat. How will this contract affect me? Will it have an impact on disability claims, medical care, research? Will the IOM "psychologize" the illness, making it even more of a stigma than it is now? Will we end up with "chronic multisymptom illness" as a new name, with a corresponding definition that is even more vague than the current one?

The questions I would not ask are the ones that appeared in the FAQs. Some of these questions were interesting. But it was very clear from their answers - the bulk of which came directly from the IOM website - that the purpose of the questions was not to address the real concerns of the ME/CFS community, but to provide a vehicle for "canned" information, supposedly from a source that is perceived as representing patient interests (CFSAC).

Stakeholders

Are the CAA FAQs propaganda? In the strictest sense, they are. The purpose of these FAQs is not to enlighten, but to persuade, which casts their intent into doubt. If we are not asking these questions, who is? And, who is providing the answers? And, in a more general sense, why is this person, or organization, trying to influence us? How do they benefit?

""Can someone help me out, here? Anyone?"

In this case, the phrasing of these FAQs answers the first two questions.

Whoever in the CAA composed the questions - and most likely their answers as well - is not familiar with government regulations (according to section Federal Acquisition Regulation (FAR) - subpart 49.1, Subsection 49.101 Authorities and
Responsibilities, contracts can be terminated at will), is not interested in taking the time to formulate actual answers (many of which were copied verbatim from the IOM website), and has a penchant for jargon (funds are not "repurposed" - a term Suzanne Vernon uses to excess - they are redirected).

In addition, the person who wrote these FAQs prefers to remain anonymous (the "we" disguises authorship) and, in keeping with the email sent by the CAA asking the signatories of the experts' letter to HHS to revoke their signatures, likes to work "behind the scenes."

As for who benefits from the contract and how - the CAA will benefit from its association with the IOM by renewing its ties to government agencies (in recent years the CAA's funding from government grants has shrunk, making it difficult to maintain six-figure salaries for some of its board members), insurance companies will benefit by not having to pay for expensive treatments once CFS is officially defined as a psychological disorder, and HHS will benefit by making sure the status quo is not challenged.

A short quiz

I have copied the questions - but not the answers - below. Chalk up a point for every question that you don't actually care about or don't understand. Add two points for every question that appears to have a purpose other than addressing a real concern of the ME/CFS community. Add three points if the question is leading. (Hint: There are at least two.) And, if you care to the read the answers, add ten points for every answer that does not satisfy you, or you can't understand, or you suspect isn't quite accurate. The more points you score, the more likely it is that these FAQs were intended to alleviate "concerns" of the proponents of the IOM contract (namely the unpopularity the IOM contract), rather than those of our community. 

Here are the questions. The answers are HERE. 

Who is the target audience for the Institute of Medicine (IOM) study?

Why did the Department of Health and Human Services (HHS) not follow the Chronic Fatigue Syndrome Advisory Committee (CFSAC) recommendation to host a workshop in consultation with CFSAC and ME/CFS experts, but instead contracted [sic] with the IOM to do a study?

Can HHS, and all associated agencies, endorse the 2003 Canadian Consensus Criteria based on the recommendation of ME/CFS experts, patients and the International Association of CFS/ME? If not, why not?

What is the standard process that the IOM uses to develop its recommendations?

What criteria does IOM use for selection of committee members?

Does the HHS contract with the IOM specifically require the IOM to use ME/CFS experts as committee members?

Does the contract require the IOM to include a patient as a committee member?

How can patients, family members and other advocates provide input into the IOM study process?

What is the Statement of Task [sic] in this contract with the IOM?

Will the IOM study address treatment for ME/CFS?

What is the total cost of the IOM contract?

If the IOM contract is cancelled, will the contract funds go to ME/CFS research?

What is the difference between the IOM committee charge and the NIH Evidence-based Methodology Workshop for ME/CFS?

Clearing the Air, or Breaking Wind? A Comment on Suzanne Vernon

Note: You can sign the petition in support of the doctors' letter HERE. You can sign the petition to support adoption of the CCC HERE. You can sign the petition to rescind the IOM contract HERE.

Yesterday, Suzanne Vernon published a post on Research First (see full text below) in which she attempted to respond to accusations that the CFIDS Association of America (CAA) had pressured the signatories of the HHS doctors' letter into withdrawing their support for the immediate adoption of the Canadian Consensus Criteria and rejection of the IOM contract. Although the email sent by the CAA did not directly ask the doctors to rescind their signatures, it was clear that asking if they "still agreed" was intended to instill doubt. (Not to mention, why send an email to all of the signatories, unless the purpose was to get them to change their minds?)

In at least one case, the email worked. Lucinda Bateman withdrew her name from the letter, stating that "This is an opportunity to build a strong federal base of support from NIH/IOM." Echoing that sentiment, or perhaps inspiring it, Vernon says, "We must have the cooperation and involvement of the various federal agencies to increase research funding and achieve real progress."

What is lacking from these pronouncements of faith in the IOM's ability to validate and fund future research "based on clear identification of gaps in our knowledge, review of our current evidence base, and creative thinking about how to move forward" is any grasp of reality.

Philosopher George Santayana is reputed to have said, "Those who cannot learn from history are doomed to repeat it." History, in the case of ME/CFS, has proven that our federal agencies (HHS, CDC, NIH) have absolutely no interest in accurately defining the illness, funding research, or including patients in decision-making processes - much less "creative thinking about how to move forward."

Let's take a brief look at the history of how federal agencies have dealt with ME/CFS:

• The CDC has never tried to come up with an accurate case definition. The current CDC case definition ("Fukuda") has been critiqued for decades by all of the reputable ME/CFS specialists and researchers as being too vague. This vagueness was intentional. The Fukuda definition was designed to stymie the ability of physicians to correctly diagnose the illness, ultimately leading to under-reporting. This was a boon to insurance companies, which did not want to pay for yet another expensive epidemic (i.e. AIDS). It was not until advocates began pressuring HHS to adopt the Canadian Consensus Criteria - which were developed by independent researchers and ME/CFS doctors - that HHS responded. Their response was to ignore the experts, and assign the case definition to people who not only know nothing about the illness, but have a vested interest making sure the definition stays vague and broad enough to classify ME/CFS as a form of "fatigue."
• The NIH has never funded this illness. It is well known that the funds awarded to studying "CFS" in the 1980s were diverted to measles, alcoholism and other "fatiguing" conditions. That trend has continued. In 2009, nothing was awarded for research into "CFS." In 2010, again - not one penny. In 2011, $6 million was awarded, which, while better than nothing, did not even come close to researching an illness that affects more people than AIDS ($3 billion), lung cancer ($233 million) and breast cancer ($800 million) combined. Does the CAA really believe that because of the IOM contract the NIH is going to turn around and award $4 billion to research on ME/CFS? (I can hear the laughter, but based on prevalence, $4 billion is what we should get.)
• The DHHS has never included patients in their decisions regarding ME/CFS. Patients were not consulted to formulate the Fukuda definition. We were not consulted when awarding funds for research. We certainly weren't consulted about the IOM contract. The idea that we are now going to be "at the table" is simply ludicrous. I suspect that by making this claim Vernon is referring to her own dinner invitation. In spite of the fact that Vernon's expertise with the illness in no way compares to that of any of the people who stood by their signatures, she will be part of the team that determines our fate. Why? For one thing, her previous work with the CDC not only supported the Fukuda definition (Chronic Fatigue Syndrome – A clinically empirical approach to its definition and study), but advocated the use of questionnaires for diagnosis, rather than objective measurements. It is not at all surprising that, given her predilections, Vernon does not consider PEM (post-exertional malaise) as a hallmark symptom of ME/CFS. (She also believes that if we slept more we would be "less tired.") With Vernon on the IOM committee we can expect no less than a definition that essentially eliminates ME/CFS as a disease entity.

Why on earth would anybody - given this 30-year history - think that the IOM (an organization that has already stated it believes ME/CFS is a subcategory of "fatiguing illnesses") will open up federal doors? Why would funding suddenly flow for "fatigue"? And why would research be more valid with cohorts composed of people with "chronic fatigue"?

But, perhaps most important of all, why did the CAA use its clout as a national CFIDS organization to pressure doctors into supporting the IOM contract, an arrangement that will benefit nobody in the ME/CFS community?

Does the CAA speak for the ME/CFS community, or is it simply speaking for itself?

(Note: Please read Dr. Mikovits' response to the CAA's request that she withdraw her signature. It's enlightening.)

__________________________________________________________________

Clearing the Air

By Suzanne Vernon

As the conversation concerning the HHS/IOM contract continues, many advocates are weighing in. Over the past several days we’ve received several questions about various points in the discussion so we wanted to address them.

First, I sent an email to my colleagues who signed the letter to Secretary Sebelius asking to adopt the Canadian Consensus Criteria and cancel the IOM contract. There is speculation that I asked them to rescind their signature. I did not ask anyone to rescind their signature or change their mind. I reached out to those I had email addresses for (29 signatories), asking if they still agreed with the letter given the IOM contract was awarded and more information on the scope of work had been provided. I heard from about half of the signatories. Several stood by their signature indicating the money for the contract should go to research

Others didn’t feel an IOM committee would do a good job. And yet others were hopeful that the IOM contract would be productive and effective. It was important to hear this because we value their expertise and opinions. Many look to us for insight, opinion and information. We try to understand all sides of an issue so we can provide the most balanced information and make the most informed decisions.

Many of my fellow advocates have asked if I am benefiting financially from my participation on the IOM committee for development of a case definition for chronic multisymptom illness. I am not. Committee member air travel and lodging are paid for with the IOM contract – which was awarded to the IOM by the Veterans Administration. Committee members receive a per diem to cover costs incurred during travel, but all work is voluntary. Outside of the meetings we have a lot of reading and research to do to accomplish our charge. Like in ME/CFS, there has been outstanding work and research on Gulf War Illness and there are significant gaps in knowledge. No one on the committee takes this responsibility lightly. We have 3 more months and two more committee meetings to complete our tasks.

Several individuals have speculated that I am on this committee purely because my brother has Gulf War Illness (my brother is happy that I was nominated and he is hopeful for our outcome), but that is not why. I was nominated for the committee because of my work and research on ME/CFS. My brother relates to ME/CFS patients because as he and many of you know, Gulf War Illness and ME/CFS have many clinical similarities. For those of you that haven’t yet, please read his personal story: http://www.cfids.org/cfidslink/2010/020304.asp

Some that are deeply opposed to the IOM contract to develop a clinical case definition for ME/CFS do not understand why we are in the discussion if we are an organization focused on research. It is precisely because we are focused on research that case definition is important to us. A physician or healthcare provider can only diagnose ME/CFS after thorough clinical evaluation. It is critically important that this clinical approach to diagnosing ME/CFS be defined and standardized for use by all physicians and providers. The diagnostic criteria is essential to advance research because it provides us with the disease-defining concepts – the core signs and symptoms – needed to identify and validate biomarkers and to provide evidence of treatment benefit.

While we understand the concerns over the contract with the IOM: fears that the right people will not be on the committee, leading to a lack of commitment and faulty results, we believe it is in the patients best interest to continue to foster a positive working relationship with HHS and IOM. No single organization can solve ME/CFS on its own. We must have the cooperation and involvement of the various federal agencies to increase research funding and achieve real progress. We can only do that if we are at the table.

We all have a lot of urgent work to do and we all can continue to contribute and help our community. There is plenty of work that needs to be done – more than enough to go around. We must galvanize around ME/CFS in order to conquer it.