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Archive for November, 2010

Question: How Many CDC Officials Does it Take to Answer a Simple Question?

Answer: More than 10

                                                                                                                                                                                                                                           The Question

The question that I posed to the CDC was:

Do these treatment and management options for CFS (http://cdc.gov/cfs/general/treatment/options.html) apply to ‘Canadian Consensus Criteria’ CFS patients or only ‘CDC criteria’ CFS patients?

                                                                                                                                                                                                                                                     I have perpetually posed this innocuous question to the CDC since July. After sending over 40 emails containing this question to more than 10 different CDC personnel over the period of 125 days, I have today finally received an ‘answer’ to my question.

                                                                                                                                                                                                                                                  I should not have needed to pose the above question to the CDC as their website should have stipulated who the treatment and management options detailed on their website were aimed at. The hundreds of thousands (if not millions) of people worldwide who fulfill the Canadian Consensus Criteria (CCC) for CFS should not have to go to the lengths that I have gone to in order to get this question answered. The CDC has a hegemonic status in relation to CFS authority and research. Patients should not have question such a fundamental issue relating to whether the CDC’s ‘treatments and management’ options apply to CCC CFS patients. Without this clarification, a large number of patients remain uncertain of the nature and application of the CDC’s ‘Treatment and Management’ options for CFS. It is not only a case of omission of information but also potentially a case of hundreds of thousands of CFS patients’ trialing an inappropriate treatment regime based on the CDC websites inadequacy through lack of stipulation. In essence, my question was necessary due to the inadequacies and omissions on the CDC website.

                                                                                                                                                                                                                                      Catch 22

This is a quote from the Switzer et al. XMRV paper that I believe alludes to the CDC’s potential contingency plan that entails playing the ‘different illness’ card:

                                                                                                                                                                                                                                                  “The physical findings in persons meeting the Canadian definition may signal the presence of a neurologic condition considered exclusionary for CFS and thus the XMRV positive persons in the Lombardi et al. study may represent a clinical subset of patients.”

                                                                                                                                                                                                                                            The main purpose of my email was to clarify what is a contradictory perspective on CFS by the CDC. I asked whether   the CDC believes that these treatments http://cdc.gov/cfs/general/treatment/options.html are useful for those fulfilling the Canadian Consensus Criteria.

                                                                                                                                                                                                                                                If they answer “yes” then they are grouping all CFS cases together. If XMRV turns out to be the ‘major player’, the CDC won’t be able to claim that Canadian Consensus Criteria CFS is a different illness to CDC criteria CFS. In essence, they will still be held accountable for their past actions and will not be able to avoid the long overdue accountability factor.

If they answer “no” then they are admitting that people satisfying the CCC don’t apply to their own recommended CFS treatments. This has the secondary effect of an admittance that the entire CDC CFS program doesn’t apply to CCC patients. Consequentially, patients fulfilling the CCC would be distanced from the CDC and no longer fall within their domain.

                                                                                                                                                                                                                                              My original question should not be perceived as a trap for the CDC but rather a question that seeks clarification of their position relating to the CCC.

                                                                                                                                                                                                                                    Obtaining an Answer

It has almost been a full-time job seeking an answer from the CDC to the above question. This journey began in July and has involved 42 out of my 43 emails sent to different CDC officials being ignored and unanswered. I have even created pseudonyms and ulterior email addresses in the hope that an email from one or both of these variables will result in an answer to my question however I still received no reply. After receiving no answer to my question for more than 2 months and more than 25 emails, it became evident that the CDC was either grossly incompetent and/or purposely avoiding answering my question.

                                                                                                                                                                                                                                     During September, my fourth email to CDC-Info containing my question resulted in this reply:

                                                                                                                                                                                                                                               “We escalated your inquiry to the appropriate CDC program. If you would forward us your pho ne number, they would like to call and discuss your question with you.”

                                                                                                                                                                                                                                        Rather than detailing a simple written reply to my question, I became skeptical of a more involved reply method by the CDC. After ignoring my repeated question for several months, I wondered why they wanted to provide a laborious phone conversation answer as opposed to a standard email reply. Several possible explanations for this atypical phone conversation answer became apparent to me.

  1. It was possible that the CDC did not want to provide a quoted answer to my question which is what a written response may entail however a phone response would not due to legal restrictions.
  2. The CDC may have been aware that I am from Australia (possibly through the means of googling my name or email address or locating my IP address) and hence may have cunningly played the ‘phone call card’ as a means of avoiding answering my question (or not being required to answer my question) due to the international nature of it.

                                                                                                                                                                                                                                                  I considered my options and momentarily felt as if I would never receive a reply to my question due to the several logistical prohibiting factors preventing an international phone conversation with the CDC. I was still determined to receive a written response from the CDC. I then sent multiple emails to the CDC detailing the nature of my disability which encompasses my inability to partake in phone conversations. I emphasized that I expected my disability to be accommodated for and I asked for a written reply to my question. After countless emails to multiple CDC officials asking that my disability be accommodated for, I still received no reply.

I then compiled this letter and emailed it to the CDC:

                                                                                                                                                                                                                                            My Letter

“I have recently been on the receiving end of disability discrimination due to actions from CDC officials. I originally emailed this question to CDC-info on the 9/22/2010 

                                                                                                                                                                                                                                                “I am emailing CDC-Info to seek clarification on an article on the CDC website regarding “Treatment and Management Options” for CFS: http://cdc.gov/cfs/general/treatment/options.html

                                                                                                                                                                                                                                             My question is “Do these treatment and management options for CFS apply to ‘Canadian Consensus Criteria’ CFS or only ‘CDC criteria’ CFS?”

                                                                                                                                                                                                                                         Thank you for taking the time to read my email and I am eagerly awaiting your response.”

                                                                                                                                                                                                                                          CDC-Info informed me that my email was forwarded to “subject matter experts” within the CDC. It was requested that I email my phone number so one of these experts could answer my question by phoning me: We escalated your inquiry to the appropriate CDC program. If you would forward us your phone number, they would like to call and discuss your question with you.”

                                                                                                                                                                                                                                                   I responded to this request:

                                                                                                                                                                                                                                               “I appreciate the offer of discussing this question over the phone however the nature and severity of my CFS makes this impossible for me. I am unable to hold a phone or talk for even short periods of time. Considering the nature of my disability, I’d be very grateful if my question was answered through other means such as an email. My reference number is SR #:1-112150438”

                                                                                                                                                                                                                                                 I sent this above email on the 9/22/2010 and I was informed that “(My) comments have been forwarded to the appropriate CDC program for their information.”

                                                                                                                                                                                                                                            After waiting for several weeks (on the 10/10/2010) I again sent an email asking that the nature of my disability be accounted for and I receive an email answer as opposed to phone answer. I was again informed that “(My) comments have been forwarded to the appropriate CDC program for their information.”

                                                                                                                                                                                                                                         After more than 6 weeks, I have still not received a reply to my emails requesting that the nature of my disability be accommodated and my question be answered in writing (by email.) These actions have breached several legal requirements.  Below the legal regulations are listed pertaining to disability discrimination. Highlighted in yellow are the specific laws breached by the CDC in this process and highlighted in red are the semantic aspect of the laws revealing violation (in this blog entry I have instead indicated the parts of the laws that have been breached in bold.) I have sent this email through ‘CC’ to Dr. Frieden.

 
TITLE 28—JUDICIAL ADMINISTRATION
CHAPTER I—DEPARTMENT OF JUSTICE

PART 35 — NONDISCRIMINATION ON THE BASIS OF DISABILITY IN STATE AND LOCAL GOVERNMENT SERVICES

Subpart A — General
  § 35.101 Purpose.
The purpose of this part is to effectuate subtitle A of title II of the Americans with Disabilities Act of 1990 (42 U.S.C. 12131), which prohibits discrimination on the basis of disability by public entities
§ 35.104 Definitions.

                                                                                                                                                                                                                              Disability means, with respect to an individual, a physical or mental impairment that substantially limits one or more of the major life activities of such individual; a record of such an impairment; or being regarded as having such an impairment.

                                                                                                                                                                                                                                                 (1)(i) The phrase physical or mental impairment means –
(A) Any physiological disorder or condition, cosmetic disfigurement, or anatomical loss affecting one or more of the following body systems: neurological, musculoskeletal, special sense organs, respiratory (including speech organs), cardiovascular, reproductive, digestive, genitourinary, hemic and lymphatic, skin, and endocrine;
 (ii) The phrase physical or mental impairment includes, but is not limited to, such contagious and noncontagious diseases and conditions as orthopedic, visual, speech and hearing impairments, cerebral palsy, epilepsy, muscular dystrophy, multiple sclerosis, cancer, heart disease, diabetes, mental retardation, emotional illness, specific learning disabilities, HIV disease (whether symptomatic or asymptomatic), tuberculosis, drug addiction, and alcoholism.
                                                                                                                                                                                                                                               (2) The phrase major life activities means functions such as caring for one’s self, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, and working.  
(4) The phrase is regarded as having an impairment means-
(i) Has a physical or mental impairment that does not substantially limit major life activities but that is treated by a public entity as constituting such a limitation;
(ii) Has a physical or mental impairment that substantially limits major life activities only as a result of the attitudes of others toward such impairment; or 
                                                                                                                                                                                                                                     Public entity means –
(1) Any State or local government;
(2) Any department, agency, special purpose district, or other instrumentality of a State or States or local government; and
 
                                                                                                                                                                                                                                        Subpart B — General Requirements
§ 35.130 General prohibitions against discrimination.
(a) No qualified individual with a disability shall, on the basis of disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity, or be subjected to discrimination by any public entity.
(b)(1) A public entity, in providing any aid, benefit, or service, may not, directly or through contractual, licensing, or other arrangements, on the basis of disability –
(i) Deny a qualified individual with a disability the opportunity to participate in or benefit from the aid, benefit, or service;
(ii) Afford a qualified individual with a disability an opportunity to participate in or benefit from the aid, benefit, or service that is not equal to that afforded others;
(iii) Provide a qualified individual with a disability with an aid, benefit, or service that is not as effective in affording equal opportunity to obtain the same result, to gain the same benefit, or to reach the same level of achievement as that provided to others;
(iv) Provide different or separate aids, benefits, or services to individuals with disabilities or to any class of individuals with disabilities than is provided to others unless such action is necessary to provide qualified individuals with disabilities with aids, benefits, or services that are as effective as those provided to others;
(v) Aid or perpetuate discrimination against a qualified individual with a disability by providing significant assistance to an agency, organization, or person that discriminates on the basis of disability in providing any aid, benefit, or service to beneficiaries of the public entity’s program;
 (vii) Otherwise limit a qualified individual with a disability in the enjoyment of any right, privilege, advantage, or opportunity enjoyed by others receiving the aid, benefit, or service.
                                                                                                                                                                                                                                                (2) A public entity may not deny a qualified individual with a disability the opportunity to participate in services, programs, or activities that are not separate or different, despite the existence of permissibly separate or different programs or activities.  
(7) A public entity shall make reasonable modifications in policies, practices, or procedures when the modifications are necessary to avoid discrimination on the basis of disability, unless the public entity can demonstrate that making the modifications would fundamentally alter the nature of the service, program, or activity.
(8) A public entity shall not impose or apply eligibility criteria that screen out or tend to screen out an individual with a disability or any class of individuals with disabilities from fully and equally enjoying any service, program, or activity, unless such criteria can be shown to be necessary for the provision of the service, program, or activity being offered.

(g) A public entity shall not exclude or otherwise deny equal services, programs, or activities to an individual or entity because of the known disability of an individual with whom the individual or entity is known to have a relationship or association.
§§ 35.152 – 35.159 [Reserved]
                                                                                                                                                                                                                                      Subpart E — Communications
§ 35.160 General.
(a) A public entity shall take appropriate steps to ensure that communications with applicants, participants, and members of the public with disabilities are as effective as communications with others.
(b)(1) A public entity shall furnish appropriate auxiliary aids and services where necessary to afford an individual with a disability an equal opportunity to participate in, and enjoy the benefits of, a service, program, or activity conducted by a public entity.
(2) In determining what type of auxiliary aid and service is necessary, a public entity shall give primary consideration to the requests of the individual with disabilities.

                                                                                                                                                                                                                                                  I trust that this situation will be rectified and I will receive a written (emailed) reply to my original question: “I am emailing CDC-Info to seek clarification on an article on the CDC website regarding “Treatment and Management Options” for CFS: http://cdc.gov/cfs/general/treatment/options.html My question is “Do these treatment and management options for CFS apply to ‘Canadian Consensus Criteria’ CFS or only ‘CDC criteria’ CFS?

Regards”                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                      I should emphasise that I am actually unable to use the phone due to my ME/CFS and have not made or received a phone call for more than 2 years. After sending this letter to the CDC, I received a prompt reply with an answer to my original question. This indicates that the CDC was very well aware of my question for the entire 4 month period and they purposely did not answer it. They only compiled an answer to my question when they were legally obliged to. This process of withholding treatment information by a government health authority group is the epitome of unethical.

                                                                                                                                                                                                                                            The CDC’s Answer

“Thank you for your recent inquiry to CDC regarding chronic fatigue syndrome (CFS). As the director of the CDC division that has responsibility for the CFS program, I am sending you this response after consulting with others at CDC who received your inquiry. I understand that a previous CDC response had included an offer to have a CDC physician contact you by phone, but that you prefer to receive a written reply to the following question: “I am emailing CDC-Info to seek clarification on an article on the CDC website regarding ‘Treatment and Management Options’ for CFS: http://cdc.gov/cfs/general/treatment/options.html. My question is ‘Do these treatment and management options for CFS apply to ‘Canadian Consensus Criteria’ CFS or only ‘CDC criteria CFS?’”

                                                                                                                                                                                                                                              In response to your question on treatment and management, CFS by any definition is based on a core set of problems: fatigue, a set of symptoms that is unique to the person but derived from a recognized list, and consequences of the fatigue and the symptoms. CDC follows the 1994 International Case Definition for CFS; however, the use of any definition requires the identification of underlying processes and core symptoms that need symptomatic treatment for improvement of overall health. Many of the treatment and management options listed on the CDC CFS website are similar to those listed in the symptom management and treatment section of the Canadian consensus document (for example, recommendations on sleep disturbance and exercise). However, any patient with CFS should consult with their healthcare professional on recommended treatment and management options based on individual symptoms.  

                                                                                                                                                                                                                                               As noted on the CDC website, the management of CFS can be as complex as the illness itself. There is no known cure for CFS, no prescription drugs have been developed specifically for CFS, and symptoms vary over time. There are a number of treatment and management tools available for CFS, such as those described on the CDC website http://www.cdc.gov/cfs/general/treatment/index.html.  

                                                                                                                                                                                                                                                   I hope the information in this response is useful to you in your struggle to manage this difficult illness.

Sincerely,

 

Stephan S. Monroe, PhD
Director,
Division of High-Consequence Pathogens and Pathology
National Center for Emerging and Zoonotic Infectious Diseases
Centers for Disease Control and Prevention”

 

Conclusion

It is striking that it took Dr. Monroe- someone very high up within the CDC to reply to the original question. It is also doubly curious that Dr. Monroe consulted with other CDC officials about what content was included within his letter. He stated that “I am sending you this response after consulting with others at CDC.” All of this for just a commonplace question. In a subsequent blog entry, I will present a critique of Dr. Monroe’s letter.

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                                                                                                                                                                                                                                                  I discussed using Fucoidan for CFS in a blog entry here: http://livingwithchronicfatiguesyndrome.wordpress.com/2010/09/14/fucoidan-for-cfs/

                                                                                                                                                                                                                                    Fucoidan is a sulfated polysaccharide that is found in various types of brown seaweeds. I have now completed the Fucoidan treatment.

                                                                                                                                                                                                                                                 I took Fucoidan for 9 weeks at the high dose of 1000mg per day. Studies have shown that this daily dose of Fucoidan can be effective against osteoarthritis.

                                                                                                                                                                                                                                                 I did not experience any improvement in CFS symptoms while taking Fucoidan. Conversely, I did not experience any side effects while undertaking the Fucoidan treatment.

                                                                                                                                                                                                                                          There have been in excess of 850 studies performed on Fucoidan and in my last blog entry about this treatment, I detailed some of the impressive properties of Fucoidan. Despite the studied potential benefits resultant from Fucoidan consumption, I am not overly surprised that Fucoidan had no effect on my CFS symptoms. In my last blog entry about this treatment, I stated that “I do not consider Fucoidan to be a serious CFS treatment and am hence only taking it on the side, next to more conventional and prescription CFS treatments.”

                                                                                                                                                                                                                            Conclusion

Fucoidan is often advertised as a panacea for many illnesses. This claim is often justified by the plethora of studies performed on Fucoidan that have discerned a range of medicinal properties. When these studies are examined closer, it becomes evident that the majority of these are in vitro or in vivo (mice) studies. Fucoidan had no effect on my CFS symptoms however this was not an unexpected outcome.

 

 

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