Fairness in Advocacy: Redefining and Reassessing Ourselves by Cort Johnson

Fairness in Advocacy: Redefining and Reassessing Ourselves by Cort Johnson

This is in response to a recent post “Redefining CFS/ME – Redefining Advocacy”and to others. This post raised many points -some of which I agree with and some of which I don’t. Comments in italics are from the original post.

(1) The ‘Stress Response’.”

The CDC knows what they are doing. They would not use these protocols if it were not their intent to obtain results that portray ME/CFS as a stress response disorder. We have heard again and again that the CDC’s exploration of the ‘stress response’ is part of a grand plan to categorize CFS as some sort of psychological disorder. There are a number of problems with this, one of which being it is impossible, unwise and unfair, to attempt to get into a researchers mind and determine that some scheme is driving his research.

All we can ask researchers to do is to proceed in a logical manner based on the facts present to them and if we disagree with a particular interpretation, to argue, based on the evidence, that it is incorrect. It behooves us to attempt to understand these complex issues before passing judgment on them – not an easy task for sure.

Studying the stress response is not synonymous with a psychological interpretation of CFS or with ‘stress’ as we encounter it in everyday life – a point Dr. Reeves has gone to some pains to illustrate. The stress response plays a role in many activities in the body, most importantly the immune response but also the autonomic and central nervous, the metabolism and others. It is, in fact, the key regulator of the immune system. Given the many triggers for CFS the stress response is not an illogical place to start. Many types of stress from infection to exercise to injury to psychological stress activate the ‘stress response’.

(2) Mood Disorders, CFS and the CDC: Could it be that such an announcement, based on a restricted investigation of the genetic picture of CFS, was used to validate their interest in post-traumatic stress?

Addressing ‘mood’ in a study does not mean an entire program is devoted to an psychological interpretation of CFS. Nor is it fair to pick out one or two statements (e.g. post-traumatic stress) and proceed as if an entire program is based on them. Instead one should look at the broad patterns of research – determine if they are justified -and then act accordingly.

Researchers should be allowed to study ‘mood’ in CFS without CFS patients going ballistic. Almost everybody who has CFS recognizes that it influences mood and numerous studies indicate that it does. It would be decidedly odd if a conservative public program such as the CDC or the NIH did not fund some studies from time to time examining mood or did not make reference, from time to time, to altered mood states in CFS. If a program focuses solely on psychological aspects of CFS then CFS patient should protest but neither the CDC nor the NIH does. To call a program such as found at the CDC that looks at many different facets of CFS from the neuroendocrine system to metabolism to the autonomic system a cover for a psychiatric approach to CFS is unjustified.

(3) Neuroendocrine Genes: “Even worse, the CDC CFS research program intentionally restricted their “landmark” genetic profiling study to only include results pertaining to neuroendocrine (stress response) aspects. Why announce research findings as “landmark” that do not comprise a complete genetic picture?

One can certainly study and make conclusions based on one part of the genome (neuroendocrine genes) even if the entire genome has not been studied. There has never been to my knowledge a complete exploration of all mutations of t he genome in one study and it’s inconceivable that such could take place. The CDC certainly should examine examine other portions of the genome but in a real world budgets are limited and choices have to be made. The choice of the neuroendocrine focus had its logical underpinnings – one cannot ask for much more than that – and even more importantly it has been successful and independent researchers have begun to confirm its results. Such an approach is again not synonymous with ‘psychology” but it does focus on the stress response and the central nervous system – two important areas of CFS research. Other researchers have begun to look at immune gene mutations in CFS, hopefully the CDC will as well. Their gene expression studies, some of which are genome wide, have again and again focused attention on immune and neuroendocrine genes.

(4) Turning the Complex Simple: Dr. Reeve’s now holds a position in the Department of Psychiatry at Emory University, as does another author of the CDC’s latest prevalence article.

The idea that being a psychologists or psychiatrist or that publishing in a psychological journal or associating with psychologists means that one’s orientation towards CFS is behavioral is simplistic and not accurate. The Emory departments focus on CFS has centered around the ability of an immune agent called interferon ability to cause fatigue and other symptoms; it is a neuro-immune approach to CFS not a behaviorist or ‘psychological approach’. These types of agents which are called cytokines are believed responsible for the fatigue, cognitive problems, malaise, etc. experienced during sickness and in that context they are studied by immunologists, psychologists and many others. Dr. Reeves, background by the way, is in viral research not psychology; he was chief of the Viral Exanthems and Herpesvirus Branch before he headed the CFS program.

(4) Truth in Reporting: The problem with such a statement is that it shows no concern for how money is spent. In fact, wouldn’t such a statement endorse the health department’s flawed beliefs about CFS? Most likely, yes. Political advocacy can produce harmful results, if we are not led by leaders who care how DHHS money is spent.

Kim McCleary’s statement is taken out of context and is interpreted incorrectly. Her statement was that the study ‘is also a call for action, etc.’ not solely one. She also states that a significant portion of the upcoming Chronicle will be devoted to an exploration of different views of the definition – something that hardly constitutes an endorsement of the CDC’s new definition. Nobody – except some patients, apparently – understands the effects of the definition well enough to dismiss it already.

John Herd’s conclusion that leaders like Kim McCleary don’t care how DHHS money is spent is similarly untenable given the CAA’s role in uncovering the CDC scandal, in their several reports on NIH funding, in their active grassroots campaign, in their Lobby Days and in their retainer of a lobbyist on capital hill. Statements like that do not, in my opinion, serve the CFS community.

(5) Private vs. Public Funding: We the people, the patients, would need to fund the research. And why shouldn’t we? After all, we’re the ones to benefit…. We the people, the patients, would need to fund the research. And why shouldn’t we? After all, we’re the ones to benefit from it.”

I agree that private funding is necessary to develop innovative ideas and seed projects that public funders can follow up on but the idea that private funding can begin to reach the levels necessary for a full blown effort on CFS isunrealistic. Even at their best private funder’s cannot begin to provide the sixty million dollars or so needed every year to do so. The pot of gold, so to speak, in medical research lies in the public arena. This does not mean the CFS community should not contribute more and cannot be effective in doing so. MERGE and the CAA had funded important projects that are helping to elucidate our understanding of CFS. They play a vital role in bringing new and innovative ideas to CFS research.

(6) Building A Model of CFS –We in the United States need an independent non-profit body of expert
ME/CFS doctors to act as a research advisory source — a conduit for private ME/CFS research funding.

I agree that CFS researchers need to articulate specific research needs and that a model or plan of attack towards CFS in the manner elucidated by Ken Friedman in his ‘Fish or War’ paper would be very helpful. I agree as well that we would best served if independent CFS researchers were to do this. There is an organization, however, that is well placed to do this – the IACFS. One could argue that one of the IACFS’s primary jobs is to articulate a coherent research model on CFS – something it has not yet done. As a professional medical organization the IACFS could do many things; it could produce badly needed standards on methodology in research, it could write position papers on different aspects of CFS, it could become an advocate for CFS on the national level, it could serve as a clearinghouse for research efforts on CFS; one could conceive of it even assisting its members in preparing grant proposals, – there are many possibilities. Whether it has the organization capability or desire to engage in these activities is unclear. It is clear, however, that CFS patients can assist it by becoming members of the IACFS and can invest in their future by empowering organizations such as the CAA, PANDORA, the WCFSA and NJCFSA and others that are attempting to make a difference in CFS.

(7) A Call to Action: It is time to ask all patients to become part of a solution toward progress, rather than remaining inactive.”

I heartily agree with John Herd’s call to action for CFS patients. As a community our contributions to advocacy at times appears almost negligible. On the state and local level we are fragmented and unorganized. Support groups are largely invisible with regards to legislative issues. Others have failed altogether with many cities, even major ones, apparently without one. Clearly the CFS community needs to be rallied and newly enrolled in the fight to gain CFS legitimacy and adequate funding.

Demonizing patient or research organizations, however, only helps to further alienate CFS patients. There is a difference between constructive criticism and attempts to tear down organizations and many times CFS advocates cross the line. Given the history of CFS the culture of alienation and blame is an easy one to fall into but it does nothing to further our efforts. Since they confirms CFS patients darkest beliefs about advocacy and the medical community ‘over the top’ remarks dis-engages them precisely at a time when they need more than ever to be engaged.

(8) Supporting CFS: Let’s support our advocacy organizations. Let’s look closely at the many issues concerning CFS and respond to them objectively. Let’s get CFS patients engaged in the process. When constructive criticism is needed let’s give it. When acknowledgment and praise is needed let’s give that as well.

(June, 2007)

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