Dr. Steve Monroe has today appointed Dr. Beth Unger as the permanent chief of the Chronic Viral Diseases Branch (CVDB) of the CDC. This is a hegemonic position relating to CFS research and this role is in essence the head of the CFS department of the CDC. Dr. Unger had held this temporary role for slightly less than a year. The article that I have written below highlights the stark inadequacies relating to Dr. Monroe’s CFS knowledge. Based on his contradictory statements, erroneous stipulations and fallacious reasoning pertaining to CFS, he is not an appropriate authority in terms of appointing the chief of the CVDB of the CDC. Consequentially, I am calling on the CDC lynchpins to immediately rectify this situation by appointing a knowledgeable CFS authority in the capacity of selecting the chief of the CVDB.
In a blog entry here: https://livingwithchronicfatiguesyndrome.wordpress.com/2010/11/27/question-how-many-cdc-officials-does-it-take-to-answer-a-simple-question/ I detailed the lengths that I went to in order to obtain a response to my simple question from the CDC. After sending over 40 emails containing my question to more than 10 different CDC personnel over the period of 125 days, I finally received a reply from Dr. Monroe. Below, I have written a critique of Dr. Monroe’s answer to my original 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?
Dr. Monroe’s response was:
“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.
Stephan S. Monroe, PhD
Division of High-Consequence Pathogens and Pathology
National Center for Emerging and Zoonotic Infectious Diseases
Centers for Disease Control and Prevention”
About Dr. Monroe
The CDC official who responded to my question was Dr. Stephan Monroe. He is the Director of the CDC’s Division of High Consequence Pathogens and Pathology. In tandem with this role, he is concurrently the Director of the National Center for Emerging and Zoonotic Infectious Diseases. He is also the individual who has decided that Dr. Unger will fill the role of the new Chief of the Chronic Viral Disease Branch (CVDB) of the CDC. This position (the CVDB) involves the fiscal delegation of the largest annual CFS budget within the US. The person who fulfils this position is also responsible for the future direction that CFS research within the CDC. Dr. Monroe has a Ph.D. in the field of biological sciences/molecular biology and is a well-published researcher, with his name appearing on in excess of 120 scientific papers. A more complete biography of Dr. Monroe can be found here: http://www.fda.gov/downloads/AdvisoryCommittees/CommitteesMeetingMaterials/BloodVaccinesandOtherBiologics/TransmissibleSpongiformEncephalopathiesAdvisoryCommittee/UCM136987.pdf
Critique of Dr. Monroe’s ‘Answer’
In order to analyze Dr. Monroe’s letter, it is imperative to determine what precise conclusion he is arguing for. Rather than a distinct “yes” or “no” answer to my question, he has instead provided a series of statements that support a certain conclusion.
Dr. Monroe’s comments when analysed holistically, suggest that
- The precise CFS definition used is not that important.
He supports this conclusion with the elicitation of the similarities between all CFS criteria.
This implied conclusion of Dr. Monroe’s is supported by these statements made by him:
“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.”
“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.”
If I have falsely derived Dr. Monroe’s conclusion, I am very happy for Dr. Monroe to inform me of his explicit conclusion (answer to my question.)
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.
The words, “CFS by any definition is based on…” by Dr. Monroe are aimed at highlighting the similarities between all CFS definitions. The question that Dr. Monroe is answering concerns the CDC criteria and CCC for CFS hence these are the two criteria that I will be focusing on. Dr Monroe specifies that the first symptom that is common to the CDC criteria and CCC is “fatigue.” This is a semantically correct remark however when one analyses the nature of the fatigue in these two competing definition, stark differences emerge. The CCC document states that the CCC selects patients with “more fatigue” than the CDC criteria. Also the CCC recognises the symptom of fatigue as just one arbitrary symptom among many symptoms. Contrastingly, the CDC criteria place greater emphasis on the presence of fatigue which is highlighted by this symptom being the only necessary condition needing fulfilment for a CFS diagnosis. The CCC also requires both physical and mental fatigue symptoms as necessary conditions for a CFS diagnosis, which contrasts the CDC criteria only requiring physical fatigue for a corresponding diagnosis. The CCC also states that fatigue is an inappropriate term to use to describe the physiological sensation experienced by CFS patients. They continue on to distinguish normal fatigue from the fatigue CFS patients experience being an accumulation of; exhaustion, weakness, heaviness, general malaise, lightheadedness and sleepiness that is overwhelmingly debilitating. The CCC concludes that the CDC’s CFS criteria are flawed in that they make it very difficult for physicians to separate the fatigue consequential of CFS from the fatigue caused by other illnesses.
Dr. Monroe has erroneously focused on the similarities between CFS definitions and not the differences. He has essentially argued for the homogeneity that CFS definitions comprise due all the definitions containing the common symptom ‘fatigue’ and secondary other symptoms. These similarities do not amount to an argument for a common treatment. Completely independent illnesses being treated by a common method due to sharing an arbitrary symptom in fatigue plus x other symptoms is analogous to saying all diseases that have a sore throat as an arbitrary symptom and other accompanying symptoms should be treated the same way. This of course would mean whether one has tonsillitis, a common cold, EBV, streptococcus or diphtheria is irrelevant as a single treatment covers all these illnesses. This is the logic that Dr. Monroe is employing.
“CFS by any definition is based on… a set of symptoms that is unique to the person but derived from a recognized list.” Once again, Dr. Monroe has made a semantically correct remark however when the nature of these “symptoms” is analysed, crucial variances emerge. The CDC’s CFS criteria require the fulfillment of one necessary symptom- fatigue (as documented above.) They also require the meeting of 4 additional criteria from the list of; cognitive impairment, sore throat, tender lymph nodes, muscle pain, joint pain, headaches, non-refreshing sleep or post exertional malaise. The criteria aspect of the CCC stipulates that a patient fulfilling the CCC must meet criteria for fatigue, post-exertional malaise and/or fatigue, sleep dysfunction and pain. Combined with these requirements, the patient must also have at least two neurological or cognitive manifestations and at least a symptom from two of the following categories; autonomic, neuroendocrine or immune manifestations. There are further criteria that need fulfilling for a patient to be diagnosed with CCC CFS however the above is an outline of some of the necessary conditions. It is evident that these CCC exclude the majority of patients fulfilling the CDC CFS criteria. Dr. Monroe’s implied conclusion from his letter was that ‘The precise CFS definition used is not that important.’ This conclusion was reached due to an omission of the stark symptomatic differences between the CCC and the CDC criteria for CFS.
Jason et al. (Comparing the Fukuda et al. Criteria and the Canadian Case Definition for Chronic Fatigue Syndrome) have studied the CCC cohort and concluded that CCC CFS patients share many key features. These include; similar symptoms, severe impairment, comparable levels of fatigue and weakness and similar neurological symptoms. The symptoms that are common to CCC patients can interfere with everyday living ability. This study supports the notion that CCC patients comprise a distinct and homogonous CFS group. Contrastingly, the ‘any 4 points’ checklist nature of the CDC CFS criteria mean that a large diversity of patients fulfill the criteria. Jason et al. ( Jason LA et al. (2010) The Development of a Revised Canadian Myalgic Encephalomyelitis Chronic Fatigue Syndrome Case Definition, American Journal of Biochemistry and Biotechnology) have emphasized that the CDC’s CFS criteria are polythetic in that only four criteria out of eight are necessary for a CFS diagnosis. Jason et al. continue to state that due to this polythetic criteria, different groups of patients are erroneously being compared. This is due to symptoms (that are often considered hallmark CFS symptoms) such as post-exertional malaise and cognitive impairments not being necessary for a CFS diagnosis. Dr. Monroe’s implied conclusion that ‘the precise CFS definition used is not that important’ is flawed due to the vast differences between the CCC and CDC CFS criteria. This is in combination with the CCC identifying a homogenous patient group while the CDC identifies a heterogeneous patient group.
Jason et al. (Jason LA, Helgerson J, Torres-Harding SR, Carrico AW, Taylor RR. Variability in diagnostic criteria for chronic fatigue syndrome may result in substantial differences in patterns of symptoms and disability) performed a study comparing patients who fulfilled the Fukuda et al. CFS criteria and patients who filled a specific ME criteria. The authors also compared these two groups to a group that had chronic fatigue due to psychiatric causes. This Jason et al. study concluded that a significant difference existed between these three groups. These differences were mainly consistent of neurological, fatigue, cardiopulmonary abnormalities neuropsychiatric and rheumatological symptoms. Jason et al. determined that those meeting the ME criteria were significantly different from those patients in the psychiatric fatigue group. Also the Fukuda et al. group resembled the psychiatric group much more than the ME group resembled the psychiatric cohort. This study result emphasizes that there is a significant difference between those types of patients that fulfill the CDC’s CFS criteria compared to other CFS criteria. Dr. Monroe’s implied conclusion that ‘the precise CFS definition used is not that important’ is therefore problematic.
Jason et al. (Jason et al. A Comparison of the 1988 and 1994 Diagnostic Criteria for Chronic Fatigue Syndrome) performed a study titled ‘A Comparison of the 1988 and 1994 Diagnostic Criteria for Chronic Fatigue.’ The Jason et al. study revealed that the patients fulfilling the 1988 criteria were a more severely functionally impaired cohort that were more symptomatic compared to those fulfilling only the 1994 CDC CFS criteria. Jason et al. concluded that those fulfilling the 1988 CDC criteria may be a clinically separate group of patients. The authors also wrote that the 1994 criteria may encompass a heterogeneous cohort of patients with a range of illness severities and disabilities. Although this study was not performed on CCC patients, the result does emphasize that different CFS criteria identify clinically separate groups of patients. This further jeopardizes Dr. Monroe’s conclusion that ‘the precise CFS definition used is not that important.’
The median CDC CFS incidence estimate of 0.24% by Reyes et al. (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.) in 2003 determined that only 16% of their CFS cohort had been privy to their CFS diagnosis and received treatment. This is a contrast to the large majority of CCC patients who are housebound or bedbound due to their CFS. This graphic illustration of further highlights the vastly different types of patients fulfilling the CCC in comparison to the CDC criteria for CFS. Contrary to Dr. Monroe’s implied conclusion that ‘the precise CFS definition used is not that important’ this study suggests that the definition that the CFS patient fulfils is of utmost importance.
Jason et al. (Jason, L. A., Corradi, K., & Torres-Harding, S. (2007). Toward an Empirical Case Definition of CFS. Journal of Social Service Research) have presented research suggesting that key differences exist between CFS patients with high levels of infectious and inflammatory processes in comparison to those CFS patients with low levels of infectious and inflammatory processes. The authors also highlight a possible CFS subgroup that has cognitive impairments as a primary symptom and other symptoms of a lower intensity. Jason et al. conclude their paper by strongly advocating the use of subgrouping CFS cases in order to aid researchers in determining a higher level of understanding of this illness including possible preventions, treatments and cures. Dr. Monroe’s comments seem to advocate the opposite of what Jason et al. recommend. Dr. Monroe’s implied conclusion that ‘The precise CFS definition used is not that important’ appears to be an attempt to lump well defined CFS subgroups back together underneath the single giant umbrella of CFS. Advances in medical research tend to arise as a consequence of illness subgrouping however Dr. Monroe’s comments indicate that he is an advocate of the reversal of this process.
Dr. Monroe’s implied conclusion from his letter was that ‘The precise CFS definition used is not that important.’ He attempts to support this conclusion by detailing the commonalities shared by CFS definitions such as “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.” Using the logic of focusing on the similarities between two competing entities to support the non adoption of one of the entities is a fallacy. I will use a quasi ‘reductio ad absurdum’ argument to prove this point. Let us consider the first entity in this argument to be a grey horse. The second entity is a grey rock. Using Dr. Monroe’s logic of focusing on similarities but not differences, we can state that great similarities exist between the rock and the horse. This is because the rock and horse and both composed of atoms, they are both grey, they are both found on the same planet and currently exist in the same era. What is more relevant is to focus on the differences between the two entities. The horse is an animate mammal while the rock is an inanimate and solid accumulation of minerals and/or mineraloids. It is evident from this example that we can classify the horse and rock as vastly different entities. This classification was only achieved through the means of focusing on the differences between the two entities and not the similarities. Dr. Monroe’s implied conclusion that ‘The precise CFS definition used is not that important’ arose through listing the similarities between the two definitions however he omitted mentioning the differences.
The reasoning behind Dr. Monroe’s logic that the CCC and CDC criteria for CFS both describe the underlying illness- ‘Chronic Fatigue Syndrome,’ is understandable. Both criteria have the same illness name in usage. This is a case of the logical fallacy of ‘equivocation.’ ‘Equivocation’’ is defined as “Where the referent of a word or expression in a second sentence is different from that in the immediately preceding sentence, especially where a change in referent has not been clearly identified.” An example of equivocation involves this syllogism: ‘love is a four letter word, love is an emotion and therefore four letter words are emotions.’ In this context, ‘love’ is being described in two differing manners and hence the syllogism becomes flawed, regardless of form. In the context of Dr. Monroe’s letter, he is defining CFS with two different definitions. The CCC does technically call the illness that its criteria described ‘CFS.’ This does not mean that it is the same illness as the CDC criteria define as CFS. The CCC also labels the illness in question ‘myalgic encephalomyelitis.’ This is a more appropriate term for the illness due to (as discussed previously) the patients that fulfil the criteria having vastly different symptoms and physiological abnormalities than those fulfilling solely the CDC criteria for CFS. The illness described within the CCC is essentially a distinct illness from the illness characterised by the CDC criteria for CFS. Dr. Monroe has made the error of equivocation and has understandably, yet superficially failed to realise the different “core set of problems” contained within the CCC in comparison to the CDC criteria for CFS.
“CDC follows the 1994 International Case Definition for CFS.” This comment by Dr. Monroe is factually correct. The dubious nature of his remark involves the unbridled acceptance of this polythetic, generalized and overly broad CFS definition by the CDC. Dr. Monroe has purposefully labeled the CDC’s CFS criteria as “International” which implies that it is universally accepted. The term ‘international’ within the CDC criteria is misleading as it only pertains to the ‘international’ researchers that compiled the CDC’s 1994 CFS definition. These international researchers were selected by the CDC. This circular nature relating to the composition of these criteria is equivalent to person X who is an AIDS denialist, handpicking a specific French doctor and a specific German doctor (who are both AIDS denialists.) These doctors may then compile some criteria for AIDS fulfillment that exclude HIV infection. The criteria that are then produced are “International” in the same manner that the CDC’s criteria for CFS are international. Also the selection of those specific individuals by the group (in this case the CDC) creating the criteria involves a potential subjective and selective bias relating to the selection process. The criteria in question are more reflective of the CDC’s pre-1994 position on CFS than on the standard scientific method which encompasses all of the specific appropriate authority within the scientific community.
The standard scientific method resulted in the creation of the CCC for CFS. This process occurred due to a plethora of CFS specialists, who deal with CFS patients in a primary setting, reaching a consensus relating to what criteria should be required for a CFS diagnosis. The CCC are the culmination of many CFS experts professional opinions resultant from observing symptoms from tens of thousands of CFS patients in clinical consultations. My research suggests that almost every endocrinologist, neurologist, infectious disease specialist, CFS specialist and rheumatologist commonly dealing with CFS patients in Australia (barring Professor Lloyd who is funded by the CDC) uses the CCC. Based on my research, 14/15 of the CFS specialists in Australia use the CCC criteria. Worldwide, very few CFS specialists who don’t have financial links to the CDC actually use the CDC criteria for CFS. Despite being produced by the hegemonic CDC, the CDC’s CFS criteria have now become an almost extinct entity in a primary care, CFS specialist setting. Dr. Monroe’s implied conclusion that “The precise CFS definition used is not that important” is problematic as he is favouring the CDC’s CFS criteria over other criteria in a practical setting (without any arguments to support their usage.)
The CDC itself as an autonomous institute, has over a 14 year period produced a CFS prevalence estimate that has increased over 1,500 fold (Gunn, W.J., Connell, D.B., & Randall, B. (1993). Epidemiology of chronic fatigue syndrome: The Centers-for-Disease-Control study. In B.R. Bock & J. Whelan (Eds.), Chronic Fatigue Syndrome) and (Reeves, W.C., Jones, J.J., Maloney, E., Heim, C., Hoaglin, D.C., Boneva, R., Morrissey, M., & Devlin, R. (2007). New study on the prevalence of CFS in metro, urban and rural Georgia populations. Population Health Metrics 2007) This is testament to not only a nebulous periphery of the CDC’s changing CFS definition but also an uncertainty relating to what patients actually fulfil these criteria. The CDC has failed to demonstrate that the patients fulfilling their current criteria (the 1994 CDC criteria) share any similarities at all. The broader and more watered down the CDC’s CFS criteria have become, the less representative they have been of sick CFS patients- the very cohort they were originally designed to distinguish prior to the criteria ‘evolving’ to encompass 1,500 times their original cohort population.
Sampson (Sampson, CLOSE ANALYSIS OF A LARGE PUBLISHED COHORT TRIAL INTO FATIGUE SYNDROMES AND MOOD DISORDERS THAT OCCUR AFTER DOCUMENTED VIRAL INFECTION) performed an extensive analysis of cohorts containing CFS, fatigued and mood disordered patients. Sampson concluded that broad CFS definitions such as the Oxford and Fukuda et al. definitions include patients with a psychological/psychiatric fatigue etiology. A study by Jason (Jason. L, Problems with the New CDC CFS Prevalence Estimates,) provides further evidence that the overlapping and secondary symptoms in CFS are the primary symptoms of unrelated disorders. Jason explains that major depressive disorder is a prime example of a psychiatric disorder that shares symptoms such as fatigue, sleep disturbance, joint pain, muscle pain and impaired concentration with CFS. These symptoms along with the fatigue accompanying major depressive disorder, provides a fulfilment of the Fukuda et al. CFS criteria. Jason writes that these patients could be misclassified as CFS patients in studies. The CDC’s CFS criteria are also problematic when applied in an operationalized manner due to the lack of clarity and absence of a well-defined cohort. Jason et al. (Jason, L.A., N. Najar, N. Porter and C. Reh, 2009a. Evaluating the centers for disease control’s empirical chronic fatigue syndrome case definition. J. Disabil. Policy Stud.) have determined that 38% of the population with a major depressive disorder diagnosis were misdiagnosed with CFS under the CDC’s CFS criteria. This is despite a concession by the CDC that “It is incorrect that…. CFS is a form of depression.” http://www.cdc.gov/cfs/education/wb1032/chapter2-8.html These studies suggest that the CDC’s own criteria are problematic in their current form and although the “CDC follows the 1994 International Case Definition for CFS” it does not make the criteria optimal or without major flaws.
Although Dr. Monroe’s original comment that the “CDC follows the 1994 International Case Definition for CFS” is semantically correct, the actual acceptance of these criteria in the current era by the CDC raises questions relating to the CDC’s progressive embracement of the scientific method. Due to being a CDC employee and spokesperson, Dr. Monroe’s comments reflect not only a personal viewpoint but also his institute’s stance. Consequentially, the words “Dr. Monroe follows” are in this context interchangeable with “CDC follows” resulting in “Dr. Monroe follows the 1994 International Case Definition for CFS.” The above criticisms of the CDC’s acceptance of their own criteria for CFS are also therefore applicable to Dr. Monroe’s acceptance of these criteria.
***Please note that writing from this point onwards, my health deteriorated and hence I am not as thorough or as precise in my criticisms of Dr. Monroe’s answer as I would like to be***
However, the use of any definition requires the identification of underlying processes and core symptoms that need symptomatic treatment for improvement of overall health.
This statement by Dr. Monroe is ambiguous and hence I will analyze it from its two possible perspectives.
Dr. Monroe’s statement is based on the assumption that all definitions of CFS pertain to the same homogenous patient group. This is not the case as demonstrated by this article: https://livingwithchronicfatiguesyndrome.wordpress.com/2010/10/09/a-meta-analysis-of-the-efficacy-of-graded-exercise-therapy-in-treating-cfs-part-3/ The heterogeneity of ‘CFS’ means that very distinct “underlying processes and core symptoms” are present beneath the CFS umbrella. The CCC for instance selects patients with similar “underlying processes and core symptoms.” Contrastingly, those patients just fulfilling the CDC criteria for CFS and not the CCC will have distinctly different “underlying processes and core symptoms that need symptomatic treatment” as opposed to CCC patients. This emphasizes the importance of distinguishing CFS patient subgroups through definitions as consequential treatments will correlate to the specific subgroups’ “underlying processes and core symptoms.” Dr. Monroe has falsely made the broad statement that “any definition” of CFS will cover the identical “underlying processes and core symptoms” however in actuality, CFS definitions, that characterize a homogenous type of patient (such as the CCC) will pertain to different ““underlying processes and core symptoms” in contrast to other definitions such as the CDC criteria for CFS. Dr. Monroe’s implied conclusion that “The precise CFS definition used is not that important” involves the failure to realise the stark differences between the aforementioned two criteria.
The other interpretation of Dr. Monroe’s statement involves his use of the terms “any definition” referring to not any CFS definition but rather any disease definition. If this was Dr. Monroe’s comment’s intended meaning, then he has made a tautological statement. In essence, this interpretation of Dr. Monroe’s remark involves the referral to any disease within the set of diseases requiring “identification of underlying processes and core symptoms” for the sake of “improvement of overall health.” Epidemiologically, treating symptoms to improve symptoms is the basis of medicine and this is an obvious point.
Regardless of the ambiguity aspect of Dr. Monroe’s comment, his statement implies that definitions are largely irrelevant and what are of merit are symptomatic treatments. This is a problematic viewpoint as the purpose of definitions is to characterize distinct groups of patients in order to study and learn what constitutes an appropriate treatment for an approximately homogeneous group of patients. Consequentially, appropriate treatments are developed or taken for like patient groups. Dr. Monroe’s implied conclusion that “The precise CFS definition used is not that important” is dubious due to many CFS patients having in excess of 50 symptoms. Treating these patients symptomatically (with no regard for treatments that similarly characterised patients holistically improved on) constitutes a blatant disregard of the Hippocratic Oath “I will prescribe regimens for the good of my patients according to my ability and my judgment.”
The goal of modern medicine should be to distinguish like patient groups and hence appropriate holistic treatments as opposed to the process of haphazard and symptomatic prescription of treatments for potentially misdiagnosed (in the case of CDC criteria) CFS patients. Dr. Monroe’s implied conclusion that “The precise CFS definition used is not that important” therefore does little to evolve scientists understanding of CFS or prevent the aforementioned dystopia.
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
What are relevant in this instance are the differences between treatment and management options on the CDC CFS website and the CCC. Many symptomatically and physiologically distinct illnesses share similar treatments ho wever this does not support the notion that these illnesses are the same. Similarly, the CDC’s CFS website and CCC may share the occasional peripherally similar treatment however this does not support the argument that the illnesses being treatment are the same. Dr. Monroe’s implied conclusion that “The precise CFS definition used is not that important” is also unsupported by his comment that “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.”
The CDC website recommends these specific treatments for CFS patients; professional counselling, CBT, GET, support groups, sleep hygiene, pain therapy, orthostatic instability treatment and antidepressants. In essence, the CDC’s treatments are psychosomatically centred and highly resemble treatments for depression. Contrastingly, the CCC recommends treatment diversity targeting physiological (as opposed to psychosomatic) symptoms. The CCC’s treatments cover the categories of sleep disturbance, pain, fatigue, cognitive manifestations, autonomic manifestations, neuroendocrine manifestations and immune manifestations. The stark contrast between the CDC’s treatment options for CFS and the CCC’s treatment options highlight the diametrically opposed angles that these differing criteria target. Dr. Monroe’s implied conclusion that “The precise CFS definition used is not that important” due to “Many of the treatment and management options listed on the CDC CFS website (being)… similar to those listed in the symptom management and treatment section of the Canadian consensus document” is further jeopardised due to the aforementioned contrasting treatment angles. The CDC website for CFS targets a predominantly psychosomatic illness as demonstrated by their relevant treatments, while the CCC are only focused with treating a debilitating, purely physiological illness.
(for example, recommendations on sleep disturbance and exercise).
In order for a patient to fulfil the CCC, exercise must be contraindicated in that patient. Therefore by definition, GET is not suitable for CCC patients. If a patient improves as a consequence of exercise, they are automatically excluded from the CCC. Contrastingly, GET is a primary treatment contained on the CDC’s CFS website. The CDC’s website even recommends GET to “Very ill people who are housebound or bedbound.” This is a stark contrast to the CCC which contains a table comparing the physiological responses to exercise between healthy people and ME/CFS patients. Within this table, the serious physiological effects of exercise on ME/CFS patients are clarified. The CCC even stipulates that “Externally paced “Graded Exercise Programs” or programs based on the premise that patients are misperceiving their activity limits or illness must be avoided.” The CDC’s graded exercise therapy is based on these fundamental ideas. This is elaborated on in this article: https://livingwithchronicfatiguesyndrome.wordpress.com/2010/09/10/a-meta-analysis-of-the-efficacy-of-graded-exercise-therapy-in-treating-cfs-part-1/
The CDC criteria for CFS don’t require patients fulfilling their criteria to have sleep disturbances. Contrastingly, sleep abnormalities are a necessary condition if one is to fulfil the CCC. The CCC lists 11 separate and pragmatic methods to improve the sleep quality of CFS patients. In contrast, the CDC criteria for CFS don’t require that CFS patients have a sleep disturbance
Sleep disturbance and exercise were the two treatments for CFS that Dr. Monroe claimed were similar between the CDC’s CFS website and the CCC. After analysis, it is evident that these treatment options (despite similar names within the corresponding criteria) are vastly different and doctors and patients must in fact decide between them due to stark differences. Dr. Monroe’s implied conclusion that “the precise CFS definition used is not that important” is therefore also unsupported by Dr. Monroe’s comment that “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
The CDC research team is meant to inform the doctors about the latest CFS research and treatment suggestions- not the other way around! They are meant to be (and considered by many to be the appropriate authority relating to CFS. The CDC should either provide recommendations or not. If the CDC is going to put information on their website, it should be assumed that doctors will follow it. Dr. Monroe’s comment that I should “consult with (my)… healthcare professional on recommended treatment and management options” results in a cyclic argument. I am supposed to consult with my healthcare professional about treatments however they are consulting and referring to the CDC’s CFS website. Dr. Monroe’s comments are intended to deflect any accountability and responsibility concerning the CFS treatments that I undertake however the CDC itself is the very institute that has been created to determine treatments for illness such as CFS. The CDC’s CFS website also fails to stipulate that healthcare professionals should be the instigators of the various treatments and hence the ‘treatment and management options’ listed on their website will be blindly followed by many CFS patient’s, independent of their healthcare professionals.
There is no known cure for CFS, no prescription drugs have been developed specifically for CFS
This is a self admittance of the CDC’s lack of progress concerning CFS. Over several decades, the CDC (with the largest annual budget within the US to study CFS) has made little inroads in the treatment of CFS and their ‘treatment and management’ options have remained largely unchanged during their period studying CFS. The CDC’s lack of appropriate direction and flawed definition of CFS are the two main contributing factors as to why “There is no known cure for CFS, (and) no prescription drugs have been developed specifically for CFS.” In contrast, the Whittemore Peterson Institute was created by the parents of a CFS patient. Before the Whittemore Peterson Institute had opened, they had found the retrovirus, XMRV, in the majority of CFS patients’ blood. Major drug companies are now working towards creating anti-retrovirals that target XMRV. The processes leading towards discovering a “cure for CFS” and creating “prescription drugs have been developed specifically for CFS” have only begun as a consequence of a CFS patient’s parent’s research into treating the illness. This recent progress in CFS research has emphasized the lack of progress (and indeed backwards progress) that the CDC has made over decades concerning CFS research. As opposed to being a glowing endorsement of the CDC’s CFS program, Dr. Monroe’s comment highlights the lack of positive outcome as a result of the CDC’s program concerning CFS research. It is conceivable that Dr. Monroe’s implied conclusion that “The precise CFS definition used is not that important” is a common viewpoint shared by the CDC. This falsely believed statement may be the catalyst for the lack of progress by the CDC relating to developing CFS treatments and is possibly the reason why “There is no known cure for CFS, no prescription drugs have been developed specifically for CFS.”
Dr. Monroe’s statement that “no prescription drugs have been developed specifically for CFS” is not semantically correct. The drug Ampligen is a prescription drug that is specifically for CFS. Ampligen is yet to pass phase three approval however contrary to Dr. Monroe’s assertion, it has been “developed specifically for CFS.” It should be noted that the CDC has not been involved in the development of Ampligen.
Dr. Monroe’s insidious answer to my question was intended to avoid a simple “yes” or “no” answer. Dr. Monroe has avoided explicitly stating the conclusion that “The precise CFS definition used is not that important” however his premises all support this conclusion. I have demonstrated that this implied conclusion of Dr. Monroe’s is flawed. Dr. Monroe is invited to again answer my question with a consistent answer. Regardless of Dr. Monroe’s direct answer to my question, he has made only erroneous statements that contain contradictions, false information and fundamentally flawed arguments that emphasise his lack of understanding of the illness CFS. Dr. Monroe’s lacks of CFS knowledge even after he stated that “I am (he is) sending you (me) this response after consulting with others at CDC” is further evidence that he is not the appropriate authority to select the chief of the CDC’s CFS program.
Some other illuminating answers from Dr. Monroe, relating to CFS can be found in Mindy Kitei’s (from CFS Central) interview. In this interview, he blatantly avoids answering any question that he is asked. This interview can be found here: http://www.cfscentral.com/2010/08/sunday-monroe-5-am-final-final.html