CDC Stakeholders’ meeting on CFS Strategic Research Plan and e-Petition

Two posts around the CDC Stakeholders’ Meeting on CFS Strategic Research Plan

Open PDF of CDC Chronic Fatigue Research Program External Peer Review here on ME agenda: CDC CFS External review

Panel of External Reviewers: Matthew Boulton, MD, MPH, Anthony L. Komaroff, MD (Chair), Gudrun Lange, PhD, James Oleske, MD (excused), Peter White, MD)

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First, a commentary from Mary Schweitzer, second, notice of an e-Petition from Tom Kindlon:

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From: Mary Schweitzer 

I found this language in the call for the CDC “stakeholders’ meeting on CFS” to be most disturbing. (See below)

They refer to “medically unexplained chronically fatiguing illnesses, in particular CFS.”

This language is important, because disability insurance companies use the phrase “medically unexplained syndromes” (or MUS) to deny claimants.

CDC’s plans all involve promoting the disease as something psychological, caused by “stress.”

They have a new set of questionnaires that lop off the top 30 percent in severity (the most severely ill) and then add in women with depression.

They blatantly violate the CDC’s own Fukuda study of 1994, that stated the most important area for new research would be to identify subgroups.

Instead, they keep broaden the definition more and more, to blur the lines and exclude the very ill.

And now they have boldly adopted the language of insurance companies as well.

The following language concerns me the most:

“The objective of the five-year strategic plan is to conduct public health research leading to the control and prevention of medically unexplained chronically fatiguing illnesses, in particular CFS.”

Sound familiar?

Where was the voice of the patient as stakeholder, when this was created?

Obama pushed through a lot of funding for medical research in the economic revitalization bill, and I’m certain they want to capture their fair share, but their research just gets scarier and scarier. I see Peter White’s fingerprints in this.

Mary Schweitzer

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From: The CFIDS Association of America

The CFIDS Association of America just received this advance notice of the following public meeting. The Federal Register announcement, copied below, is expected to be published on April 15. The Association encourages all those who are interested in the CDC’s research to express their views, in person or in writing. Please send your statements directly to CDC at CFSResearchPlan@cdc.gov

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CDC Stakeholders’ Meeting on CFS Strategic Research Plan

On April 27, 2009, 1:00-5:00 PM, CDC will host an open meeting concerning chronic fatigue syndrome (CFS).

The meeting will take place at CDC’s Global Communications Center, Building 19, Auditorium B2, 1600 Clifton Road NE, Atlanta, Georgia 30333, and is open to the public, limited only by the space available.

The purpose of the public meeting is to solicit input from interested parties on issues that CDC will consider as it develops a five-year strategic plan for its CFS research program.

Input is sought only on the CFS strategic research plan, not on CDC’s overall CFS program. As CDC is one of many institutions conducting research on chronic fatigue syndrome, the strategic plan will only address research that is within CDC’s purview.

Topics Include: The objective of the five-year strategic plan is to conduct public health research leading to the control and prevention of medically unexplained chronically fatiguing illnesses, in particular CFS.

The agenda will focus on the goals and objectives of CDC’s CFS research program in five major categories:

– Studies of Defined Populations
– Provider-based Patient Registries
– In-hospital Clinical Studies
– Laboratory Studies
– Provider and Public Educational Intervention Research

The agenda does not include development of consensus positions, guidelines, or discussions or endorsements of specific commercial products. Agenda items are subject to change as priorities dictate.

Members of the public wishing to make an oral statement during the meeting should limit their remarks to five minutes and should address the research agenda.

Written comments and suggestions from the public on the research agenda are encouraged and may be submitted to the email address listed below by April 22, 2009. While CDC will carefully consider the individual comments and opinions it receives, it will retain discretion in its decision-making process. A draft strategic plan will also be presented at the Chronic Fatigue Syndrome Advisory Committee meeting held May 27-28, 2009
( http://www.hhs.gov/advcomcfs/ )

Background:

CDC recently solicited and considered recommendations from an external review panel that evaluated the research and professional education components of the CFS research program. The panel’s report summarizing the findings of the peer review has been published on the CDC CFS website at
www.cdc.gov/cfs/pdf/cdc_cfs_research_program-external_review.pdf

In brief, the panel noted that:

(1) the CDC team currently leads the world in both the breadth and depth of their research into CFS;

(2) the efforts of CDC have highlighted the public health importance of CFS;

(3) all current research projects address important issues; and

(4) CDC is uniquely positioned to conduct a broadly based research program derived from the population, a large-scale educational outreach program (particularly to healthcare professionals) and to provide expert web-based resources for patients, their families and non-healthcare professionals.

The report included several valuable recommendations which CDC has begun to implement, starting with the development of a strategic plan to drive the program’s research, prevention, and control activities for the next five years. This meeting will provide input to that strategic plan.

Persons anticipating attending the meeting are requested to send written notification by April 22, 2009, including name, organization (if applicable), address, phone, fax, and email addresses to the contact below. Additional information on visiting CDC is available at
http://www.cdc.gov/about/resources/visitGuide.htm

For Further Information Contact:
CFSResearchPlan@cdc.gov

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e-Petition

CDC CFS research should not involve the empirical definition (2005)

Tom Kindlon writes:

I have set up the appended petition.

I know other people would have used other words but I wanted to keep things as simple as possible.

If people write to me with alternative wordings, I do not promise to answer as I have a lot of other work to be doing at the moment.  Other people can always set up their own petitions if they like.

I have been somewhat understated in the hope that people will be willing to sign it. I hope researchers and medical doctors as well as patients and their loved ones will sign it.

If people feel it is useful, please try to get as many signatures as possible.  You don’t have to post all of this – even just posting the links is useful:

http://CFSdefinitionpetition.notlong.com
i.e.
http://www.ipetitions.com/petition/empirical_defn_and_CFS_research

[AOL: <a href=”http://CFSdefinitionpetition.notlong.com”>Here</a>]
i.e.
[AOL: <a href=”http://www.ipetitions.com/petition/empirical_defn_and_CFS_research“>Here</a>]

People with websites, blogs, etc could link to it.

Tom Kindlon

P.S. People do not need to donate to the site.

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Petition

http://CFSdefinitionpetition.notlong.com
i.e.
http://www.ipetitions.com/petition/empirical_defn_and_CFS_research

Title: CDC CFS research should not involve the empirical definition (2005)

Text: The petition

We call on the Centers for Disease Control and Prevention (CDC) to stop using the “empirical” definition[1] (also known as the Reeves 2005 definition) to define Chronic Fatigue Syndrome (CFS) patients in CFS research.

The CDC claim it is simply a way of operationalizing the Fukuda (1994) definition[2]. However the prevalence rates suggest otherwise: the “empirical” definition gives a prevalence rate of 2.54% of the adult population[3] compared to 0.235% (95% confidence interval, 0.21%-0.536%) and 0.422% (95% confidence interval, 0.29%-0.56%) when the Fukuda definition was used in previous population studies in the US[4,5].

The definition lacks specificity. For example, one research study[6] found that 38% of those with a diagnosis of a Major Depressive Disorder were misclassified as having CFS using the empirical/Reeves definition.

References

[1] Reeves WC, Wagner D, Nisenbaum R, Jones JF, Gurbaxani B, Solomon L, Papanicolaou DA, Unger ER, Vernon SD, Heim C. Chronic fatigue syndrome – a clinically empirical approach to its definition and study. BMC Med. 2005 Dec 15;3:19.  Link: http://www.biomedcentral.com/1741-7015/3/19

[2] Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The chronic fatigue syndrome; a comprehensive approach to its definition and study. Ann Int Med 1994, 121:953-959.

[3] Reeves WC, Jones JF, Maloney E, Heim C, Hoaglin DC, Boneva RS, Morrissey M, Devlin R. Prevalence of chronic fatigue syndrome in metropolitan, urban, and rural Georgia. Popul Health Metr. 2007 Jun 8;5:5.

[4] Reyes M, Nisenbaum R, Hoaglin DC, Unger ER, Emmons C, Randall B, Stewart JA, Abbey S, Jones JF, Gantz N, Minden S, Reeves WC: Prevalence and incidence of chronic fatigue syndrome in Wichita, Kansas. Arch Int Med 2003, 163:1530-1536.

[5] Jason LA, Richman JA, Rademaker AW, Jordan KM, Plioplys AV, Taylor RR, McCready W, Huang CF, Plioplys S. A community-based study of chronic fatigue syndrome. Arch Intern Med. 1999 Oct 11;159(18):2129-37.

[6] Jason, LA, Najar N, Porter N, Reh C. Evaluating the Centers for Disease Control’s empirical chronic fatigue syndrome case definition. Journal of Disability Policy Studies 2008, doi:10.1177/1044207308325995.

Further reading:
Problems with the New CDC CFS Prevalence Estimates Leonard Jason, Ph.D., DePaul University
http://tinyurl.com/2qdgu4 i.e.
http://www.iacfsme.org/IssueswithCDCEmpiricalCaseDefinitionandPrev/tabid/105/Default.aspx

Brief comment from Tom Kindlon: I have Chronic Fatigue Syndrome (CFS) for over 20 years. I want a lot of research progress in my lifetime and believe the empirical definition (2005) (also known as the Reeves definition (2005)) decreases the chances that this will occur this: abnormalities that would show up using a more strictly defined definition won’t show up using the empirical/Reeves definition; and abnormalities that might show up in the broad group covered by the empirical/Reeves definition are not necessarily representative of CFS patients. This messes up the CFS literature even further.

Petition sponsor:

Tom Kindlon, a patient with Chronic Fatigue Syndrome (CFS) for over 20 years. I have done a lot of voluntary work in the area for over a decade. Recently I had two letters on CFS published in medical journals.

Links

The paper defining the empirical/Reeves definition can be read at:
http://www.biomedcentral.com/1741-7015/3/19

Some comments on the paper have been posted at:
http://www.biomedcentral.com/1741-7015/3/19/comments

An article by Leonard Jason PhD on the issue can be read at:
http://tinyurl.com/2qdgu4 i.e.
http://www.iacfsme.org/IssueswithCDCEmpiricalCaseDefinitionandPrev/tabid/105 /Default.aspx

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