CNN article on Fibro

CNN has a new article about CFS/fibro
http://www.cnn.com/2007/HEALTH/06/21/pain.remedies/index.html  Go most of the way down the page.

"In the past year, some of the biggest headlines in pain management have been about fibromyalgia (chronic bodywide pain in joints, muscles, and tendons) and CFS, two conditions that strike women at as much as six times the rate of men. After years of failing to take these conditions seriously, the Centers for Disease Control and Prevention and other groups have recently mounted aggressive public-information campaigns alerting women to the prevalence of these conditions and the importance of accurate diagnosis and treatment.
Experts have also made dramatic gains in finding treatments that work by focusing on the sleep problems and physical weakness that seem to fuel these diseases. (Could painkillers be hurting your heart? )

Marly Silverman of Pompano Beach, Florida, learned she had fibromyalgia and CFS more than 10 years ago. "It felt like acid chemicals going through my veins," she says, describing the excruciating pain that forced her to quit her job as vice president of a bank after fruitlessly seeking treatment from a variety of specialists.  Today, Silverman manages her pain with a plethora of remedies, including painkillers, anti­spasmodics (muscle relaxants), and lidocaine patches for localized pain. To speed research into these complex and mysterious illnesses, Silverman founded PANDORA, a patient advocacy and research organization that cosponsors a national conference on the latest research into these and related neuro-endocrine immune conditions.

"There's no question that women aren't always taken seriously when they ask for help with a condition that doesn't have a clear-cut explanation."  "The solution is to take a proactive approach, the Shurmans say, even if you need to look in the mirror and give yourself a pep talk and write down a list of symptoms or questions before you head for the doctor's office. "The most important thing is to be persistent," Gloria Shurman says. "If you're in pain, don't ever take no for an answer."

I'll echo what Gloria Shurman said -- "don't take no for an answer". If that doctor won't take your pain seriously, do whatever it takes to get to a pain management clinic. Most PCPs are hesitant to prescribe pain pills because of a fear that they'll be investigated. Pain management specialists don't have that phobia.

At the medical group where I was repeatedly refused pain pills, apparently because they didn't believe my reports of severe pain, the head of the pain management clinic says his policy is "pain is what the patient says it is". If I could've somehow gotten to him, the problem would have been solved and I'd be back to work.

Tags: CNN, fibromyalgia, pain

Diagnostic Defiance by Margaret Williams

What is wrong with those doctors and politicians who continue to damage patients who are incredibly sick by denying the very existence of the formally-classified disorder from which these patients suffer? What drives these doctors not only to denigrate but also to misdiagnose these patients through adherence to their own misplaced ideology, as well as to disseminate misinformation about the disorder, thereby ensuring that appropriate support and care for patients is either withheld or withdrawn. As if this were not harmful enough, these same doctors recommend that necessary investigations should not be performed on these very sick people, even though other countries describe these patients as some of the sickest members of society. What is it about myalgic encephalomyelitis (ME) that brings out the worst in these influential decision-makers who currently dominate both medicine and politics in the UK and who follow an ideological agenda that has been referred to as "the hegemony of the left and its stranglehold on the universities, media, civil service and other key institutions (whose) deliberations are inseparable from political manoeuvring" (Londonistan. Melanie Phillips. Gibson Square, 2007. ISBN978-1-903933-90-9)?

Why do such decision-makers persist in dismissing the irrefutable evidence that ME/CFS is not "chronic fatigue"? As has been pointed out so often, it was in 1990 that the American Medical Association was forced to issue a correction that said: "A news release in the July 4 packet confused chronic fatigue with chronic fatigue syndrome; the two are not the same. We regret the error and any confusion it may have caused". What is so difficult about that unambiguous statement that Wessely School psychiatrists are unable to understand?

As these psychiatrists continue to ignore the distinction between chronic fatigue and the chronic fatigue syndrome (which they call "CFS/ME"), are they perhaps unaware of this distinction? If so, as self-professed experts, why are they not aware of this distinction?
Trudie Chalder, a former mental nurse who is now Professor of Cognitive Behavioural Psychotherapy at King's College, London and whose research interests are listed on Google as "epidemiological and aetiological studies of FATIGUE in adolescents and adults" describes herself thus on the KCL webpage: "I am an expert in cognitive behavioural psychotherapy (CBP) and I am particularly interested in CBP for chronic fatigue syndrome". This seems to be further proof - if it were needed - that in defiance of the evidence to the contrary, the Wessely School still sees "CFS/ME" as a mental health issue.

If these Wessely School "experts" cannot differentiate between two different nosological entities with different criteria and symptomatology, by what standards are they considered "experts"?

Why are the UK adult patients' support organisations (the ME Association and Action for ME) not hammering this home as relentlessly as the psychiatrists who continue to obfuscate this cardinal distinction?

As someone recently wrote to Heather Walker of AfME about the disparity between a report that (together with the MEA) AfME had commissioned in 2000 and AfME's 2001 re-defined statements on the benefits of graded exercise: "There's a bit of an irony, because Wessely, after the House of Lords debacle, wrote a notoriously twisted piece called "What's in a name" which he then deleted, perhaps now they have £300,000 plus of taxpayers' money to facilitate what reads like their 'final solution' against those whom they can now barely conceal their anger and contempt. The PACE document is an extraordinary piece of dishonesty and deceit from start to finish, and if you compare it with the application they made in 2002 to the MRC, it becomes ever more sinister (when one spots) how they've toned it down for public consumption, and have made alterations to conceal what they were originally trying to get away with to get the 'right' results for their main sponsors, the Department for Work and Pensions (whom they 'advise', to the very serious detriment of the public affected by ME). Ordinary decent members of the public are being herded into that trial under false pretences. When they publish the 'results', there will be widespread suffering on a scale hitherto unknown (due to) the damage the Institute of Psychiatry and Barts and their supporters have wreaked via GPs and their influence on the DWP --- never mind the research environment which they have managed to devastate over the years. Their latest wheeze is to invent an IoP 'Biomedical' Research Centre to keep control. None of this has happened mysteriously. Individuals are responsible, and they tend to have names".

The need for the distinction between chronic fatigue and CFS/ME remains highly topical. Much has been written recently about the latest prevalence estimates of "CFS" released by the US Centres for Disease Control: one such commentator is UK psychiatrist Professor Peter White of The Centre for Psychiatry, Wolfson Institute of Preventative Medicine at Barts in London, who is one of the three Principal Investigators in the much-criticised UK MRC PACE trial on "CFS/ME".  In his commentary White makes statements that seem to defy both credibility and the principles of scientific research (How common is chronic fatigue syndrome; how long is a piece of string? Peter D White. Population Health Metrics 2007 5:6 doi 10.1186/1478-7954-5-6).

Some of his statements require scrutiny, and the following - taken in order as they appear in his paper-- are examples: "If the disease in question has no biological marker and is difficult to define clinically, the problem of working out the accurate prevalence becomes esoteric. CFS is just such an illness". The Penguin English Dictionary defines "esoteric" as "intelligible to or intended for the initiated only". Why should White suggest that attempts to ascertain the prevalence of a world-wide disorder be restricted to an elite minority, when the disorder has been classified for years as "A serious legitimate diagnosis CDC Priority I Disease of Public Health Importance" by the CDC itself?

It is misleading and incorrect for White to imply that because there is no single definitive biomarker for "CFS", it is difficult to diagnose. There are patterns of consistent and reproducible abnormalities by which ME/CFS can be diagnosed with virtual certainty but these are the very investigations that are denied to UK patients on the recommendations of Wessely School psychiatrists themselves.

White's psychiatrist colleague, Professor Rachel Jenkins of the Institute of Psychiatry, pointed out as long ago as 1991 that "Once one is familiar with the concept, such patients are in practice not too difficult to differentiate from those with true psychiatric illnesses. The physical symptoms should be an aid to diagnosis, although they may be wrongly attributed to psychological illness unless care is taken in eliciting them" (BMB 1991:47:4:241-246)

The key question is: what is meant by "CFS"? If the article upon which White is commenting is referring to what is now known in both the UK and the US as ME/CFS, White would seem to have exposed his own ignorance and biases once again. It should never be forgotten that White believes that the biomedical model of illness should be replaced with the psychosocial model, especially for complex disorders like "CFS" (see www.meactionuk.org.uk/Proof_Positive.htm ).

There is no single definitive biomarker for many other serious disorders, including multiple sclerosis, but competent clinicians who rely on experience and clinical skill and not on tick-box "evidence-based" medicine are able to recognise specific features of such disorders and to offer diagnosis, compassion and support to patients.

What is different about ME? Why are so many UK doctors so intimidated by the omniscience of the psychiatric lobby to the extent that they fail to consider the evidence for themselves and then to speak out against such a pervasive and malign influence? There is an abundance of published evidence that sets out the numerous replicable biomedical anomalies found on appropriate laboratory testing of ME/CFS patients, so why does White disregard this evidence and why is he not publicly challenged by the medical establishment for doing so?

It is futile for White and his Wessely School colleagues to pretend that such evidence does not exist. It has existed in the medical literature for the last 60 years and it continues to mount. It is an invalid argument for these psychiatrists to claim (as they do) that the character of the disorder (ME) has altered over time to the extent that ME no longer exists, when it is they themselves who are responsible for the deliberate broadening of the case definition, thereby diluting and even removing the cardinal features of the disorder.

"Since fatigue is one of the most common symptoms reported by patients in general, delineating a specific syndrome with fatigue as a central feature risks arbitrary decisions about ascertainment". Yet again, White ignores the fact that "fatigue" is not the central feature of ME/CFS. The central feature is something very different from "fatigue": it is post-exertional fatigability and incapacitating exhaustion with concomitant malaise. Fatigue is, however, a central feature of many psychiatric disorders.

"It is no great surprise that half of all doctors do not even believe (CFS/ME) exists". Does White never consider his own role in this scientifically insupportable phenomenon?

"In order to count someone as fatigued - the central criterion for a diagnosis of CFS - individuals only needed to score the median or more of the well population, either for fatigue or inactivity". To reiterate: fatigue is not the central criterion for a diagnosis of CFS/ME but it is for many primary psychiatric disorders.

"Co-morbid psychiatric conditions may have inflated the prevalence". This is ironic, given that White was one of the team who produced the Oxford 1991 case definition of "CFS" that was responsible for including patients with psychiatric disorder whilst excluding those with neurological signs as seen in ME. It was this broadening of the patient research pool that has caused an inflated prevalence of "CFS/ME" in the UK. It is the Oxford criteria that White is using for the MRC PACE trial (thus ensuring that patients with primary psychiatric disorder are included along with those who have genuine ME. This will produce skewed results). White notes a similarly high prevalence in Wessely's UK study of fatigued primary care patients, and - crucially -- that when those patients who had a co-morbid psychiatric disorder were excluded, the prevalence fell to 0.5%. Does this not tell Wessely School psychiatrists anything? It seems that what it tells them is that they must not exclude those with psychiatric co-morbidity, otherwise their catchment will fall.

"Previous longitudinal studies suggest that psychiatric ill health can both follow and precede CFS". What is the implication of this statement? Psychiatric ill health can both follow and precede any severe organic illness and cannot determine the direction of causality in the case of "CFS".

"Our current criteria for diagnosing CFS are arbitrary, and we need to widen the net to capture all those people who become so chronically tired that they can't live their lives to their full potential". How often must it be said that "chronic tiredness" is far removed from ME/CFS? How is it that these psychiatrists consistently deny the unique characteristics of ME/CFS and focus on "fatigue" to the exclusion of those unique characteristics? How does mixing patient populations help the advancement of medical science? Widening the net to "capture" all those who are "tired" not only ignores the existing evidence about ME/CFS but perpetrates a grave disservice upon patients who suffer from it by diluting the case definition even further than at present to include anyone who complains of "tiredness".

As ME/CFS expert Professor Leonard Jason from the US so aptly states, patient assessments that "fail to capture the unique characteristics of these illnesses might inaccurately conclude that only distress and unwellness characterise these illnesses, thus inappropriately supporting a hypothetical construct called functional somatic syndromes. Using a broad or narrow definition of CFS will have important influences on CFS epidemiologic findings, on rates of psychiatric co-morbidity and ultimately on the likelihood of finding biologic markers". (Problems with the New CDC CFS Prevalence Estimates. Leonard Jason. http://iacfs.net/p/1,544.html ).

Why is it that the basic rules of scientific research are not applicable to the work of certain psychiatrists, namely the requirement to define the study population as tightly and as cohesively as possible?

***

As a fellow activist frequently points out, "Chronic Fatigue Syndrome" is an artificial construct created to cover up an epidemic of a severe, contagious illness also known as Myalgic Encephalomyelitis. Government records reviewed by Hillary Johnson in writing "Osler’s Web" reveal the ulterior motive of those who created this name: to portray it as psychological in nature so that disability benefits were more easily denied or terminated, and, intentionally, to make it easily confused with the common problem of "fatigue", when, in fact, fatigue is the least of our problems.

The claim that there is "no biological evidence" of CFS has been repeated so often that it’s accepted as truth. But the truth is, Dr. Anthony Komaroff of Harvard has counted over 4000 research studies worldwide showing biological evidence of neurologic, immunologic, endocrine and other biological abnormalities.

CFS patients frequently report insomnia or unrefreshing sleep. But fixing the underlying sleep disturbance fixes only the "fatigue" that would be expected from not sleeping well. It doesn’t cure the other symptoms – the ones that aren’t known to the general public who’ve been brainwashed into believing CFS=fatigue and nothing more. Like anyone else who doesn’t sleep well, I function better now that I’m averaging 6-8 hours sleep instead of the 2-3 hours I was getting without proper medication, but I still have objective symptoms that can be quantified, not just intangible "fatigue".

Tags: fatigue, diagnosis, insomnia, psychologists, CFS, myalgic encephalomyelitis

Sicko!

There are those in the medical profession who see the entire profession as saints and accuse me of making up things when I say that there are incompetents out there who misdiagnose and mistreat patients, and point the finger at one particular institution where the problem seems endemic, with illustrations that even other people I know have suffered at their hands; it’s not just me, and it’s not just limited to CFS patients.

One woman I know was totally ignored in their ER for hours as she got steadily worse; when she became so weak that she could not walk, she was scolded for throwing up on the floor instead of walking to the ladies room, but was not moved up the priority list, nor even offered a glass of water to combat her dehydration or a container to throw up in so it wouldn’t contaminate the floor. Finally, she had someone take her to a different ER, where she was given top priority because it was so obvious that she was in serious distress and couldn’t wait much longer. If the ER is so understaffed that they cannot cope with all the non-trauma patients, then either they need to have more staff on call for the rush periods, or they need to tell non-trauma patients upfront that they would be seen much sooner at another ER instead of letting them wait for 24 hours (or more). And in what nursing school do they teach that screaming at a patient for throwing up on the floor is "compassionate care"?

http://www.cnn.com/2007/US/06/13/hospitaldeath.probe.ap/index.html demonstrates that the problem of ignoring patients in ERs is widespread.

In a hospital at the other end of the state (not the one where my friends and I had problems), "Rodriguez was bleeding from the mouth and writhing in pain for 45 minutes while she was at a hospital waiting area. Experts have said she could have survived had she been treated early enough. ... My wife is dying and the nurses don't want to help her out," Rodriguez's boyfriend, Jose Prado, is heard saying in Spanish through an interpreter on the tapes. "What's wrong with her?" a female dispatcher asked. "She's vomiting blood," Prado said. "OK, and why aren't they helping her?" the dispatcher asked. "They're watching her there and they're not doing anything. They're just watching her," Prado said. Dr. Bruce Chernof, director of the county Department of Health Services, which oversees the facility, has called Rodriguez'sdeath "inexcusable" and said it was "important to understand that this was fundamentally a failure of caring."" According to CNN, when her boyfriend called the attention of the medical staff to the fact that she was vomiting blood, they told him "No, that’s chocolate" and walked away laughing.

Even those who see the medical profession through rose-colored glasses will be hard-pressed to explain why someone vomiting blood should have been ignored in the ER until she died. That’s one of the things that we learned in our First Aid classes should get immediate medical attention from someone with more training than we were getting in our First Aid class. Did the ER personnel not learn the same thing?

According to CNN, more people die in the US every year due to medical errors than car accidents, breast cancer or AIDS.

Just coincidentally, as that story broke, Michael Moore was in the state capitol talking about his new movie "Sicko" http://www.sacbee.com/111/story/219530.html

""There is no room for the concept of profits when taking care of people when they are sick," Moore told a crowd of nearly a thousand nurses who swarmed the west steps of the Capitol. ... "What kind of sick, cruel system is this?" Moore asked his audience. The crowd responded with: "Sicko.""

And therein lies the problem. When doctors are accustomed to receiving bonuses for limiting the number of tests ordered, profit takes precedence over patients. None of the doctors ever investigated whether my insurance would allow them to order the tests I requested; they were just so used to dealing with an HMO which gave them bonuses for keeping costs down that they automatically assumed it would cost them money to do more tests. In fact, under my insurance, it would’ve earned the medical group more money to have their lab do additional tests -- all the tests I asked for to prove that I had a neurological/immunological/endocrinological problem, not some psychiatric problem (for which I didn't meet the diagnostic criteria).

Now, it may well be that some doctors are ordering unnecessary tests on some patients. But if you’re the one patient in a thousand who really needs that test so that they can differentiate between similar symptoms and give you the proper treatment for what truly ails you, that test is not "unnecessary" and should not be denied just sothe doctor gets a cost-cutting bonus. Whatever bonus he got that year, it’s not enough to compensate for me being denied a normal life.

If the subject had come up, I would have told them "I will pay for the test myself, if that’s what it takes to convince you that my problem is not psychological"; but I was never given that option, and later doctors were astounded that these tests had not been done to verify that I truly had post-viral CFS and not a purely psychological problem. They kept asking me "why wasn’t this test done earlier?" and could not come up with a valid medical reason why it had been denied when I asked for it earlier.  If I reported symptoms X and Y, it should have been done, period.

It’s a "sick, cruel system" that makes people sicker, even permanently disabled or dead, in order to maximize profits and bonuses.

The patient’s health must come first. Before profits. Before bonuses. Even before doctors’ egos. What’s sick is not the patients, it’s the system. And the system needs to be fixed, with bonuses for getting patients healthy and keeping them healthy, not for denying treatment.

Tags: Sicko, Michael Moore, tests, health, profit, bonus, system, medical, insurance, HMO, malpractice

Problems with the New CDC CFS Prevalence Estimates

Leonard Jason, Ph.D., DePaul University

By the early to mid 1990s, the general consensus was that CFS was a relatively rare disorder affecting primarily white, middle-class women. Prevalence estimates of this illness from the CDC ranged from .002% to .0073% (Gunn et al., 1993) suggesting that there were less than 20,000 individuals in the U.S. with this illness. Toward the late 1990s, Jason, Richman and colleagues (1999) used more rigorous community-based samples and found that approximately .42% of the sample was determined to have CFS, or approximately 800,000 people from the US (Jason, Richman et al., 1999). These overall prevalence estimates were later corroborated by the CDC in another community-based sample (Reyes et al., 2003 estimated the CFS prevalence to be .24%).

In Great Britain, community estimates of CFS rates were estimated to be 2.6% (or 2.6 cases among every 100 people; Wessely et al., 1997). One needs to examine a broadened CFS case definition to understand these CFS rates in Great Britain, and if these rates were applied to the US, there would be about 4 million people in the US with CFS. Wessely et al. (1997) indicated that of the 2.6% with CFS, psychological disorders were absent in only .5%. Individuals diagnosed with CFS in this epidemiologic study were subsequently compared to a sample of people with CFS who had been diagnosed from a hospital unit (Euba, Chalder, Deale & Wessely, 1995). Of the community sample, 59% felt their illness might be due to psychological or psychosocial causes compared to 7% for the hospital sample. In Wessely et al.'s (1996) community based sample, only 64% had sleep disturbances and 63% had postexertional malaise. These percentages are rather low, as both symptoms are critical features of CFS. Thes e findings might provide a clue as to why Wessely and colleagues found CFS prevalence rates that were appreciably higher than those found by a second generation of CFS epidemiologic studies in the United States (Jason et al., 1999; Reyes et al., 2003).

It is of interest that the Great Britain CFS rates are within the range of several mood disorders. Mood disorders are the most prevalent psychiatric disorders after anxiety disorders: for major depressive episode, the one-month prevalence is 2.2%, and lifetime prevalence is 5.8% (Regier et al., 1988). Major Depressive Disorder is an example of a primary psychiatric disorder, which has some overlapping symptoms with CFS. Fatigue, sleep disturbances and poor concentration occur in both depression and CFS. Some patients with Major Depressive Disorder also have chronic fatigue and other symptoms that can occur with depression (e.g., unrefreshing sleep, joint pain, muscle pain, impairment in concentration). Fatigue and these four symptoms also are defining criteria for CFS, based on the Fukuda et al. (1994) criteria. It is possible that some patients with a primary affective disorder could be misdiagnosed as having CFS. While fatigue is the principal feature of CFS, fatigue does not assume equal prominence in depression (Friedberg & Jason, 1998; Komaroff et al., 1996). Several CFS symptoms, including prolonged fatigue after physical exertion, night sweats, sore throats, and swollen lymph nodes, are not commonly found in depression. Moreover, illness onset with CFS is often sudden, occurring over a few hours or days, whereas primary depression generally shows a more gradual onset. Some individuals with CFS might have had psychiatric problems before and/or after CFS onset and yet, other individuals may only have primary psychiatric disorders with prominent somatic features. Including the latter type of patients in the current CFS case definition could confound the interpretation of epidemiologic and treatment studies.

The CDC has recently released findings from a community-based epidemiologic study that occurred in Georgia (Reeves, Jones, Maloney, Heim, Hoaglin, Boneva, Morrissey, & Devlin, 2007). While the prior CFS prevalence rate was estimated to be .24% in Wichita, Kansas (Reyes et al., 2003), their new estimated prevalence rates were reported to be considerably higher with 2.54% (remarkably similar to the 2.6% rate in Great Britain, Wessely et al., 1997). The CDC now estimates that six to ten times more people have this illness than their previous reports in the US. In this study, the authors screened for persons who reported fatigue, problems with memory/concentration, unrefreshing sleep or pain rather than simply focusing on the single symptom of fatigue, and the authors indicated that these criteria increased the identified cases by 13%. In addition, the authors used what they referred to as standardized criteria to identify cases, and below we evaluate this new empirical CDC case def inition of CFS. To meet the new CFS criteria, individuals need to meet criteria on symptoms, level of disability and degree of fatigue, and each of these areas is described below.

As one part of the standardized CDC criteria, the Symptom Inventory is used to operationalize the symptoms of CFS (Wagner et al., 2005). For each of 8 critical Fukuda et al. definitional symptoms, patients are asked to rate the symptom on perceived frequency (1 = a little of the time; 2 = some of the time; 3 = most of the time; 4 = all of the time) and severity or intensity of symptoms (the ratings were transformed to the following scale: 1 = mild, 2.5 = moderate, 4 = severe). The frequency and severity scores were multiplied, and the sums for the 8 critical Fukuda et al. (1994) symptoms were summed. Even with summed scores for the empirical case definition needing to be greater or equal to 25 (Reeves et al., 2005), the overall level of symptoms seems relatively low for patients with classic CFS symptoms (the criterion would be met if an individual rated only 2 symptoms as occurring all the time, and one was of moderate and the other of severe severity). In addition, the 8 case def inition symptoms were based on a time period comprising the last month compared to what is specified in the Fukuda et al. (1994) criteria, which states that: "There needs to be the concurrent occurrence of 4 or more of the following symptoms, and all must be persistent or recurrent during 6 or more months of the illness and not predate the fatigue." This change in the case definition has the potential of including more individuals.

Also, part of this new CDC empirical CFS criteria is the use of the Medical Outcomes Survey Short Form-36 (SF-36) to assess substantial reductions in occupational, educational, social or recreational activities. Using the SF-36, these criteria were defined as scores lower that the 25th percentile on the physical function, role physical function, social function, or role emotional. Because the individual only needs to meet one of these areas to meet the CFS criteria, the individual might not have any reductions in key areas of physical functioning, and only impairment in role emotional areas (e.g., problems with work or other daily activities as a result of emotional problems), and then the person could meet disability criteria for CFS. Ware, Snow, and Kosinsi (2000) found that mean for role emotional for a clinical depression group was 38.9,indicating that almost all those with clinical depression would meet criteria for being within the lower 25th percentile on this scale (whic h was a score of less than or equal to 66.7). In Peter White's Dec. 3. 2006 review (http://www.biomedcentral.com/imedia/1083914155124266_comment.pdf) of Reeves et al.'s (2007) article, he states: The use of physical function, role physical and social function sub-scales is consistent with the International Study criteria for CFS, which states that the illness "results in substantial reduction in previous levels of occupational, educational, social, or personal activities." (Reeves et al, 2003). The use of role emotional is not, since it specifically asks about change in function "as a result of any emotional problems". And later White states that "In order to make these important criteria consistent with other studies, I think the authors need to re-analyse their data, omitting this sub-scale."

The last instrument used with the new CDC empirical CFS criteria is the Multidimensional Fatigue Inventory (MFI) (Smets, Garssen, Bonke, & DeHaes, 1995). Severe fatigue was defined as greater than or equal to 13 on the MFI general fatigue or greater than or equal to 10 on the reduced activity. In Peter White's Dec. 3, 2006 review of the Reeves et al.'s (2007) article (http://www.biomedcentral.com/imedia/1083914155124266_comment.pdf), he wrote: "This means that it would be possible to meet the fatigue criterion without significant fatigue; i.e. with reduced activity alone. This is inconsistent with the international study criteria for CFS." In support of this criticism by White, I believe that the general activity items refer to issues that a person with depression might easily endorse. If a person indicated that the following two items were entirely true: "I get little done", "I think I do very little in a day"; they would meet the fatigue criterion for the new CDC empirical cas e definition. Our group is currently studying individuals with major depressive disorder versus those with CFS, and we are finding individuals with a purely affective disorder being classified as having CFS with this new empirical case definition (Najar, Porter, & Jason, 2007).

It is important to better understand the two CDC community based studies (Reyes et al., 2003; Reeves et al., 2007), and this is particularly important as their CFS estimated prevalence rates have changed so dramatically. Of the individuals who were identified as having CFS during the first study (Reyes et al., 2003) that occurred over a three year period (1997 through 2000), 58 were brought back for a two day inpatient study that occurred from December 2002 to July 2003, and only 16 (28% of the original group diagnosed with CFS) had a current consistent diagnosis of CFS, using traditional methods of making this diagnosis. When these investigators employed an empirically derived system (that was used in deriving the higher prevalence rates of 2.54% in the Georgia community based study), 43 rather than 16 individuals who had been traditionally diagnosed as having CFS met this new system. Clearly, this newly developed empirical system brings in many additional people to a CFS diagnosi s. It is very possible that this new empirical classification does identify a group of individuals with high levels of fatigue, impairment, and symptoms, but it might also be identifying a group with high chronic distress and illness, rather than CFS as a unique disorder.

It is at least possible that the 2.54% to 2.6% CFS rates both the United States and Great Britain are due to a broadening of the case definition and possible inclusion of cases with primary psychiatric conditions. Some CFS investigators would not see this as a confounding problem because they believe that high rates of psychiatric comorbidity indicate that CFS is mainly a psychiatric disorder (Abbey, 1993). CFS and depression are two distinct disorders, however, even if they share a number of common symptoms. Most importantly, the erroneous inclusion of people with primary psychiatric conditions in CFS samples will have detrimental consequences for the interpretation of both epidemiologic and treatment efficacy findings.

Reeves et al. (2005) claims that the empirical definition identifies people with CFS in a more precise manner than can occur in the more traditional way. It is primarily the use of this new empirical case definition that has lead to the increase in CFS prevalence rates in the United States. In their use of the empirical case definition, several changes occurred to what had been previously recommended by an international expert committee (Reeves et al., 2003) of recommendations for the case definition of Fukuda et al. (1994). First, rather than excluding those with depressive disorder with melancholic features, only those with a current condition were excluded as opposed to what had been recommended. Of interest, of those 16 within the Reyes et al. (2003) study who had been classified with CFS using the more traditional methods, 6 had a past history of major depressive disorder with melancholic features (Reeves et al., 2005); and it is unclear how many of those 43 who were diagnos ed using the empiric case definition had past depressive disorder with melancholic features. These individuals should have been excluded, and by including them, the broadening of the case definition has the potential to bring into the CFS category those with a primary psychiatric condition. More importantly, there was little agreement between the empirical method of classifying individuals with the more traditional method of comparing whether an individual met the case definition on their critical symptoms. Rather than assuming that this might be a problem with the CFS empirical case definition, they concluded that the more traditional way of diagnosing patients was flawed. As an example of this problem, one individual who was classified as being in remission for CFS using the traditional method was diagnosed with current CFS using the CDC's empirical approach.

Papers are now appearing in the literature using this empirical case definition of CFS, and many have received considerable media attention. For example, Heim et al. (2006) recently used this new empiric case definition and the Wichita study to explore the influence of early adverse experience on risk for developing CFS. The authors concluded that childhood trauma is an important risk factor for CFS. In fact, among those with CFS, 62.8% had some type of early abuse. This is in contrast to findings reported by Taylor and Jason (2002) who found prevalence rates of sexual and physical abuse history among individuals with CFS were comparable with those found in individuals with other conditions involving chronic fatigue, including medically based conditions. Relative to those with CFS who report such history, most individuals with CFS did not report histories of interpersonal abuse.

The Reeves et al. (2005) article clearly used instruments (such as the SF-36) to make diagnostic decisions, rather than encompassing more specific criteria involving aspects of the illness (for example, whether with rest, all symptoms disappear). Given the high variability in symptom severity among persons with fatigue, standardized procedures should be employed for determining whether or not a particular symptom is severe enough to qualify as one of the symptoms required for the diagnosis of fatigue. But one needs to be extremely careful about deciding whether standardized instruments and scores need to include contextual issues, and often they do not. For example, if a patient endorses a symptom such as post-exertional malaise, standardized questions should include duration, frequency, and severity of the symptom including onset, pattern, intensity, and associated factors (see Hawk et al. 2007). Clinical judgment, which has been used in most past studies to diagnoses CFS, remain s an important role even for diseases like lupus, which use a combination of clinical judgment, patient report, and objective measures to come up with a diagnosis. This currently is not occurring with the CFS empirical case definition developed by the CDC.

Some researchers have posited that FMS, CFS, and IBS can be considered functional somatic syndromes (Barsky & Borus, 1999). Functional somatic syndromes are characterized by diffuse, poorly-defined symptoms that cause significant subjective distress and disability, cannot be corroborated by consistent documentation of organic pathology, and are highly prevalent even in healthy, non-patient groups (Barsky & Borus, 1999). Accurate measurement and classification of CFS, FMS and IBS is imperative when evaluating the diagnostic validity of controversial disease entities alternatively labeled, 'functional somatic syndromes'. For example, results of a study by Taylor, Jason and Schoeny (2001) provided support for distinctions between the five conditions of FMS, CFS, somatic depression, somatic anxiety, and IBS, but this will only occur when using symptom criteria that matches actual diagnostic criteria for these illnesses. Measurement that fails to capture the unique characteristics of th ese illnesses might inaccurately conclude that only distress and unwellness characterize these illnesses, thus inappropriately supporting a unitary hypothetical construct called functional somatic syndromes. Ultimately, using a broad or narrow definition of CFS will have important influences on CFS epidemiologic findings, on rates of psychiatric comorbidity, and ultimately on the likelihood of finding biological markers.

References

Abbey, S.E. (1993). Somatization, illness attribution and the sociocultural psychiatry of chronic fatigue syndrome. In B.R. Bock & J. Whelan (Eds.), Chronic Fatigue Syndrome. (pp. 238-261). New York: John Wiley & Sons

Barsky AJ, & Borus JF (1999) Functional somatic syndromes. Annals of Internal Medicine, 130, 910-921

Euba, R., Chalder, T., Deale, A., & Wessely, S. (1996). A comparison of the characteristics of Chronic Fatigue Syndrome in primary and tertiary care. British Journal of Psychiatry, 168, 121-126

Friedberg, J.R., & Jason, L.A. (1998). Assessment and treatment of Chronic Fatigue Syndrome. Washington, D.C.: American Psychological Association

Fukuda, K., Straus, S.E., Hickie, I., Sharpe, M.C., Dobbins, J.G., & Komaroff, A. (1994). The Chronic Fatigue Syndrome: A comprehensive approach to its definition and study. Annals of Internal Medicine, 121, 953-959

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. (pp. 83-101). New York: John Wiley & Sons

Hawk, C., Jason, L.A., & Torres-Harding, S. (2007). Reliability of a chronic fatigue syndrome questionnaire. Journal of Chronic Fatigue Syndrome, 13, 41-66

Heim, C., Wagner, D., Maloney, E., Papanicolauo, D.A., Solomon, L., Jones, J.F., Unger, E.R., & Reeves, W.C. (2006). Early adverse experience and risk for chronic fatigue syndrome: Results from a population-based study. The Archives of General Psychiatry, 63, 1258-1266

Jason, L.A., Richman, J.A., Rademaker, A.W., Jordan, K.M., Plioplys, A.V., Taylor, R., et al. (1999). A community-based study of chronic fatigue syndrome. Archives of Internal Medicine. 159, 2129-2137

Komaroff, A.L., Fagioli, L.R., Geiger, A.M., Doolittle, T.H., Lee, J., Kornish, R.J., Gleit, M.A., Guerriero, R.T. (1996). An examination of the working case definition of Chronic Fatigue Syndrome. The American Journal of Medicine, 100, 56-64

Najar, N., Porter, N., & Jason, L.A. (2007, Jan.). Evaluating the CDC new case definition. Poster presented at the International Association of Chronic Fatigue Syndrome, Ft. Lauderdale, Fl

Reeves, W.C., Lloyd, A., Vernon, S.D., Klimas, N., Jason, L., Bleijenberg, G., Evengard, B., White, P.D., Nisenbaum, R., Unger, E.R.(2003). Identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for resolution. BMC Health Services Research, 3, 25 http://www.biomedcentral.com/content/pdf/1472-6963-3-25.pdf

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, 5:5 doi:10.1186/1478-7954-5-5

Reeves, W.C., Wagner, D., Nisenbaum, R., Jones, J.F., Gurbaxani, B., Solomon, L., Papanicolaou, D., Unger, E.R., Vernon, S.D., & Heim, C. (2005). Chronic fatigue syndrome - a clinical empirical approach to its definition and study. BMC Medicine, 3:19 http://www.biomedcentral.com/content/pdf/1741-7015-3-19.pdf

Reyes, M., Nisenbaum, R., Hoaglin, D.C., Unger, E.R., Emmons, C., Randall, B., Stewart, G., Abbey, S., Jones, J. F., Gantz, N., Minden, S., & Reeves, W.C. (2003) Prevalence and incidence of chronic fatigue syndrome in Wichita, Kansas. Archives of Internal Medicine, 163, 1530-1536

Regier, D.A., Boyd, J.H., Burke, J.D., Jr., Rae, D.S., Myers, J.K., Kramer, M., Robins, L.N., George, L.K., Karno, M., & Locke, B.Z. (1988). One-month prevalence of mental disorders in the United States: Based on five Epidemiological Catchment Area sites. Archives of General Psychiatry, 45, 977-986

Robins, L.N., & Regier, D.A. (1991). Psychiatric disorders in America: The ECA study. New York: Free Press

Smets, E.M., Garssen, B.J., Bonke, B., & DeHaes, J.C. (1995). The multidimensional fatigue inventory (MFI) psychometric properties of an instrument to assess fatigue. Journal of Psychosomatic Research, 39, 315-325

Spitzer, R. L., Williams, J. B. W., Gibbon, M., & First, M. B. (1995). Structured Clinical Interview for DSM-IV - Non-Patient Edition (SCID-NP, Version 2.0). Washington DC: American Psychiatric Press

Taylor, R.R. & Jason, L.A. (2002). Chronic fatigue, abuse-related traumatization, and psychiatric disorders in a community-based sample. Social Science & Medicine, 55, 247-256

Taylor, R.R., Jason, L.A., & Schoeny, M.E. (2001). Evaluating latent variable models of functional somatic distress in a community-based sample. Journal of Mental Health, 10, 335-349

Wagner, D., Nisenbaum, R., Heim, C., Jones, J.F., Unger, E.R., & Reeves, W.C. (2005). Psychometric properties of the CDC Symptom Inventory for the Assessment of chronic fatigue syndrome. Population Health Metrics, 3:8 www.pophealthmetrics.com/content/3/1/8

Ware, J.E., Snow, K.K., & Kosinski, M. (2000). SF-36 Health Survey: Manual and Interpretation Guide. Lincoln, RI: QualityMetric Incorporated

Wessely, S., Chalder, T., Hirsch, S., Wallace, P., & Wright, D. (1997). The prevalence and morbidity of chronic fatigue and chronic fatigue syndrome: a prospective primary care study. American Journal of Public Health, 87, 1449-1455

Wessely, S., Chalder, T., Hirsch, S., Wallace, P., & Wright, D. (1996). Psychological symptoms, somatic symptoms, and psychiatric disorder in chronic fatigue and chronic fatigue syndrome: A prospective study in the primary care setting. American Journal of Psychiatry, 153, 1050-1059

Wessely, S., Chalder, T., Hirsch, S., Pawlikowska, T., Wallace, P., & Wright, D.J.M. (1995). Postinfectious fatigue: Prospective cohort study in primary care. The Lancet, 345, 1333-1338

 

 

From the One Click Group

From The One Click Group:

Professor Leonard Jason on CFS

Reeves of the CDC.

Professor Leonard Jason writes: "Measurement that fails to capture the unique characteristics of these illnesses might inaccurately conclude that only distress and unwellness characterize these illnesses, thus inappropriately supporting a unitary hypothetical construct called functional somatic syndromes."

One Click comments: "Are the glaring flaws in this CFS study carried out by William Reeves of the CDC et al either research fraud or the deliberate and cynical use of flawed and disreputable information garnering and analysis techniques guaranteed to provide a beneficial psychiatric outcome? It should be noted that psychiatrist Peter White, team leader of the scientifically fraudulent PACE trial that is squandering over £11.1m of British taxpayer's money for psychiatry industry benefit alone, is a close associate of CDC/William Reeves and sits on many CDC committees. This Reeves et al paper represents a disreputable and unethical attempt to falsely conflate somatoform disorder figures to garner further psychiatric funding."

 

* * *

This has, in fact, been one of the big problems in CFS research.

In the mid-1980s, CDC painted the problem as psychological, sweeping under the rug all the biological facts that were already known to the doctors who were treating the epidemic. The book "Osler’s Web", thanks to research that included the government’s own documents, suggests that there was an ulterior motive in calling it psychological. AIDS had just appeared on the scene and neither CDC nor disability insurance carriers wanted another incurable virus so soon after that one.

Having stated in no uncertain terms that the patients were merely crazy, CDC has had to continue touting that theory so they won’t have to admit they made a mistake, and has structured their efforts to "find a cure" in ways that ensured they would not find any support for a biological cause – nearly two decades ago, Elaine DeFreitas found a retrovirus in CFS patients, CDC could not duplicate her research finding, and upon investigating, she found they were freezing the samples, which she had specifically told them not to do because it would kill the virus. The conclusion of a seasoned researcher was "they didn’t WANT to find anything."

Reeves, whose passion is "stress", was hand-picked to supervise CFS because of his bias that it’s caused by stress, not by a virus. Time and again, he has either completely ignored evidence or twisted it to imply it says what he wants it to say. Even at CDC’s own press conference last year announcing "the first biological evidence" of CFS, he managed to convey to the journalists that the whole problem was stress ... something which is proven inaccurate by 4000+ studies (according to Dr. Komaroff’s count, putting to lie CDC’s assertion that this was the first-ever biological evidence).

To believe Reeves’ version, you’d have to believe that I dealt successfully with the deaths of close family members and dear friends, and the stress of combining full-time work with being a full-time student, but years later, something as simple as cooking dinner (the last thing I did before getting sick) pushed me over the edge and turned me into a psychological basket case.

If coming home from my grandmother’s funeral to the news of my uncle’s death and hearing on the radio before my eyes were open the next morning that two friends (one since kindergarten, the other even longer) had been killed in a DUI accident didn’t push me over the edge as too much emotional stress in too short a time period, then, believe me, a simple day-to-day stressor like having to shop for groceries during the post-work crush or run for the bus wasn’t going to do it, either.

There was no extraordinary stress in my life at the time I got sick; in fact, my stress level was lower than it had been in years. I trace my CFS back to a severe virus with 105 fever; the day before that, I was perfectly healthy, and ever since, I’ve been hitting on four cylinders. Reeves can deny it all he likes, but I was there, I saw it. My boss saw it. The person who cared for me during the virus can describe in detail what he saw, and it wasn’t someone bursting into tears and screaming in an emotional meltdown: he noted objective signs of physical illness like vomiting, diarrhea and a 105 fever. Things that the "psychologizers" like Reeves would like to erase from his and my memory banks and replace instead with a false memory of a major emotional crisis to explain away the inconvenience of my insistence that what I have is biological in origin, triggered by a virus.

Unfortunately, there are those who believe that if they didn’t see it, it didn’t happen. (I’ve had doctors tell me that because I’m not throwing up at 2:30 PM in their office, I also don’t throw up at 7 AM every morning like clockwork; they know better than I do what happens in the privacy of my own home. Thankfully, my current doctor asked the right questions and figured out why "first thing in the morning, before I eat anything" made sense.)

Over the years, CDC has whittled away at the definition of CFS. Where the doctors treating it noted there was always an infectious onset reported by patients, that has been removed from CDC’s definition, which allows for a gradual onset (i.e., bringing patients with slowly worsening psychological problems into the circle). The hallmark symptom of CFS, exercise intolerance, is not in CDC’s definition – the easiest and cheapest way to differentiate between depression and CFS is to send the patient out to exercise and see if they return uplifted or physically collapsed.

There have been some concerns in the patient/activist community, voiced by the physicians and psychiatrists who are patients, that CDC’s patient selection for CFS studies is not selecting patients with CFS, but a large number of patients with psychologically-based fatigue, in order to prove Reeves’ pre-determined answer: that CFS is related to depression or stress or being a fragile female, rather than – as other scientists have proven, biologically linked to MS and polio.

That sort of "research" benefits no one, except Reeves’ ego, by ensuring that his erroneous theory will not be proven wrong.

Patients who didn’t even know they were sick until CDC enrolled them in the CFS study are not indicative of most patients with CFS. We know we’re sick, and often have engaged in a prolonged battle with doctors who think that if a few blood tests are normal, then there’s "nothing wrong", and therefore no necessity for the expensive sleep study, brain scans and neurological testing that would show something very wrong.

When I went for a clinical trial of sleeping pills and reported sleeping an average of 2 hours a night for several years, the doctor supervising the study couldn’t believe that no one had done a sleep study to determine why – it would have proved that I was tossing and turning in pain till 5 AM and disproved the doctors' "nothing wrong" theory.  Like CDC, refusing to verify what the patients actually report as major problems is the easiest way to support psychological theories.

The only difference between the doctor supervising the clinicaltrial and my PCP was that one believed me when I said I wasn’t sleeping well because of untreated pain, and the other turned things around in his mind till he found an explanation he liked better, regardless if that explanation matched the facts he’d been given.

That’s also the only difference between CFS experts and CDC doctors: one group believes patient reports of medical history and symptoms, and the other group dismisses what the patients experience to substitute their own version of the facts, regardless if those facts accurately reflect what patients have told them.

Tags: CFS, CDC, functional somatic syndrome, fraud, research, flawed, disreputable

What if the CFS patient is a doctor?

Dr. Erich Ryll, who retired a couple years ago as our local CFS expert, was the investigator in 1975 when an epidemic hit Mercy San Juan Hospital. It was obvious to him that this was a communicable viral disease, and affected all departments of the hospital with equal severity.

Tests for known viruses were negative, but Dr. Ryll was positive that it was some sort of virus. The CDC investigator, however, told him that his colleagues – respected doctors and dedicated nurses – were just lazy and didn’t want to work. Dr. Ryll knew these people, had worked with them for years, and didn’t believe that hard workers could overnight become lazy malingerers.  He continued to look in age-old medical literature for a disease that matched their symptoms, even after CDC dismissed the symptoms as purely psychological.

Just because the patients were doctors and nurses didn’t spare them from the same erroneous assessments of being lazy and/or crazy as lay patients get.

Since Myalgic Encephalomyelitis occurred in small geographic pockets, in epidemics about 10 years apart, if you weren’t in the right place at the right time, you wouldn’t have seen it first-hand. Dr. Ryll and the CDC investigator weren’t at L.A. County Hospital in 1934 or in Iceland in 1946 or at Royal Free Hospital in 1955, so they didn’t recognize the disease at first; Dr. Ryll later recognized it as matching the description of the 1984 Incline Village epidemic, i.e., Myalgic Encephalomyelitis or Chronic Fatigue Syndrome.

For those who’d like to read Dr. Ryll’s entire patient handout or contact him directly: http://home.tampabay.rr.com/lymecfs/ryll.htm

"I have followed these patients on a daily basis since 1975. This is the longest continual study of this type of disease that has ever been made. Because of this, I have learned all the nuances, all the signs and symptoms of the disease. Because the complaints of patients are so many and often seemingly bizarre, I often attempted to disclaim them as being real. But I learned that you patients were always right and I was always wrong. In studying this disease, one must always have an open mind. This disease teaches the physician to be humble."

"It begins with an influenza-like onset, often so severe in nature that I call it a flu-storm, with headaches, sore throat, fever, dizziness, runny nose, nausea and vomiting, muscle aching, extremity pain, and other features. Unlike ordinary flu, the flu-storm can last from weeks to over a year."

"Because of a frightening new disease that physicians cannot recognize, diagnose, or understand, and because it never seems to go away, patients become depressed. Upon visiting physicians, this depression is recognized and blamed for the entire illness. This of course is not true - the depression is a result of the disease and does not cause the disease."

"The autonomic nervous system that results in flushing, blushing etc., that controls blood vessels is deranged in the disease. Sweating, flushing, icy and blue hands and feet, hot sweaty hands, red and blotchy hands are common. When patients are in relapse it is easy to tell that they are ill; pallor of the face and dark areas under the eyes, etc. But when they are not in relapse, but still sick, they are mistakenly though to be well. One cannot place reliance upon looks."

"Patients have a constant plateau of illness during which they are still not well, but do not appear that ill. Appearances can be deceiving. Bear in mind that many patients with cancer, heart disease, diabetes, and other severe illnesses often appear to look normal to the casual observers they are encountered at the grocery store, church, and other sites."

"The chronic fatigue syndrome first occurred in modern times at the Los Angeles County Hospital in 1934. It occurred in the midst of a poliomyelitis epidemic. Several astute physicians recognized that there was a new disease present. Gilliam, who wrote a large research paper accurately described CFS but did not name it. In the fifties there was an epidemic in Iceland, also associated with a polio outbreak - but again, recognized the be a new disease. It was found that patients who developed CFS became immune to polio. CFS has occurred more or less world-wide. Epidemics have been described in closed, contain populations such as schools, military barracks, convents, monasteries, and specially hospitals."

"There is a very interesting illness called the Post-Polio Syndrome. Patients who have had polio 20-30 years before acquire an illness that closely resembles CFS. I have examined some of these people and cannot tell the difference. Could this syndrome be due to a mutant polio virus that escapes immune detection? Earlier I said that the early epidemics of ME/ENM/CFS were always in association with a polio outbreak. And that those who came down with ME/ENM/CFS were immune to polio."

Dr. Ryll warns "the discomfort of these patients is made worse by the hostility that they encounter from family, friends, associates, and physicians." It’s important for medical professionals to remember that there are viruses for which there are no tests yet – the AIDS virus was killing people before there was a way to test for it – so just because there are no positive blood tests does not mean that there is nothing wrong with the patient. There are neurological and immune system tests that will be positive, and Dr. A. Martin Lerner recommends a Holter monitor be part of every diagnostic process because so many CFS patients have cardiac abnormalities.

Time and again, the symptoms reported by CFS patients and pooh-poohed by doctors as being too bizarre to be believed have been proven to have a biological cause.  Patients complained that exercise made them worse, which doctors couldn't fathom, until a series of research studies proved a variety of objective biological measures of physical abnormalities exacerbated by exertion.

CDC may have told the patients at Mercy San Juan that they were just too lazy to work, but thankfully, the local investigator was their colleague who knew the truth, and kept looking until he found a number of abnormalities that explained the symptoms.  Unfortunately, most CFS patients don't have a doctor who knows them and their work ethic so intimately, and often get tagged with an erroneous and inappropriate label of lazy, crazy or malingering without the proper tests being done to prove they are truly sick with a virus.

Tags: CFS, Ryll, Mercy San Juan, doctor, research, infectious venulitis, Iceland, Royal Free Hospital, L.A. County General, virus, Chronic Fatigue Syndrome, CDC, investigation, lazy, crazy, malingering

It's All in Your Head

Many doctors, on hearing a patient describe sleeping many hours per day, leap to the conclusion that the problem must be depression. So many CFS patients get erroneous depression diagnoses that Dr. David Bell even commented on it in his book as a way for the physician to end his responsibility to search for an explanation for the symptoms.

However, Dr. Sheila Bastien, the neuropsychologist who analyzed hundreds of CFS patients, warns "Many medical disorders present as psychological disturbances. Pancreatic cancer can cause visual hallucinations. Adrenal tumors will cause behavior that can seem psychotic. So you have to be very careful not to accept psychiatric diagnoses at face value."

In Spring 1986, Dr. Bastien saw her first CFS patients at the behest of Drs. Cheney and Peterson. All 15 had positive brain scans and reported cognitive difficulties.

Her first, and most startling, observation was that the patients’ low IQ scores did not match up with their education and professions. She documented IQ losses of up to 40 points in those who had previously taken IQ tests, and noted that it was primarily due to poor performance on the right side of the brain. After testing 300 patients, she had found disparities between hemispheres of up to 45 points, indicating brain dysfunction. She concluded there was some organic brain disease at work. Depression would reduce scores across the board; this affected only certain functions.

"Initially, the patients seemed quite bright", doing well at defining words and reciting their medical histories. But on nonverbal, visual, and abstract tasks, they did poorly. "Even more bizarre anomalies existed in the realm of memory", which involves both sides of the brain. The patients did well with the written word, but were severely impaired with recall of the spoken word. "They were more impaired than the head concussion cases that I've tested that have been in litigation. ... And it looked worse than most of your average depressions."

Right brain defects continued to appear. With the first batch of 15 patients, "Bastien was able to surmise only that something rather startling was occurring in the right brain hemispheres of fifteen people, something that could neither be faked nor be the result of even the most severe depression." The test results were not the pattern expected for depression and anxiety.

"My impression was, My God! This is a lot of damage to be seeing in a group of people who have these flu-like symptoms. ... I was horrified." Bastien was then invited to review MRI scans of the patients’ brains. "The lesions were bigger in the MS patients, but there were more lesions in the [CFS] patients." More evidence that there was an organic problem and not something the patients were imagining.

After testing 200 patients, she concluded "I have never seen this pattern before", but, it was, in fact, a pattern; a distinctive neuropsychological signature for the disease, proving above all that it was most assuredly not depression or anxiety, but an acquired brain dysfunction. The patients all reported that this dysfunction began with an infectious illness, and the MRIs confirmed lesions showing viral damage to the brain.

Like Dr. Bell, Dr. Bastien concludes "It’s not that I don’t respect and understand that some problems are psychological. But I have an ax to grind, as it were, in seeing psychologists clean up their act and physicians clean up theirs so there aren’t so many false negatives."

Unfortunately, to those who haven’t studied CFS in depth to know what they should be looking for, it’s easy to take the handful of symptoms that look like depression or anxiety and slap that label on the patient, and tempting to ignore the numerous symptoms that don’t match up. And when the patient fails to respond to anti-depressant or anti-anxiety medications, it’s equally easy to put the blame on the patient, calling them uncooperative or accusing them of not wanting to return to work, rather than, as Dr. Groopman suggests when the patient doesn’t improve, reconsidering the diagnosis to see if there’s another possibility that would explain the symptoms, and trying a different approach to see if a different type of medication might produce improvement.

For too many patients, "depression" is the end of the diagnostic process. Few outside the CFS community know of Dr. Bastien’s warning not to "accept psychiatric diagnoses at face value", and the underlying medical causes aren’t sought out as a result.

It’s well known that the sooner CFS patients get proper treatment, the more likely they are to return to work. Conversely, the longer a CFS patient suffers under an inappropriate psychiatric diagnosis with improper treatment, the less likely they are to return to work.

Patient and psychologist Ellen Goudsmit has researched CFS extensively. Cutting through the psychobabble that confuses those patients who aren’t familiar with the concepts, Goudsmit concludes that what patients need most is not psychiatry but anti-viral medication.

Cognitive Behavioral Therapy (i.e., the absurd notion that the virus underlying CFS can be cured by talking about it) was proven by researchers to be essentially useless. While some patients benefit from learning to cope with their newfound severe limitations, most found it of no help at all. Some, having been convinced by the therapist that the only thing wrong with them was a false belief that they were sick, pushed their limits to prove to themselves that they were not really sick, and relapsed.

In a recently-published article on pacing (interspersing periods of rest with periods of activity throughout the day), Goudsmit stressed "It is worth noting here that the original version of pacing was not conceived as a treatment or therapy for the illness as a whole and Goudsmit has made no claims about the effects of this strategy on visual disturbances, thermoregulatory abnormalities, sore throats, nausea, balance problems and some of the other symptoms associated with ME and CFS." She believes it is effective only when paired with proper medical treatment of the underlying virus and its symptoms.

Moreover, researchers have determined that pacing does not increase the total amount of work that a patient can do, it merely reduces the amount of fatigue the patient feels at the end of the day because they have not pushed themselves to the brink of energy bankruptcy. Instead of running on empty, they "top off the tank" several times during the day.

Just as all that glitters is not gold, all that looks like depression isn’t necessarily psychiatric in origin. Surface similarities between CFS and depression give way to a long list of divergent test results which prove that they are not the same thing. The "easy answer" may benefit the doctor who wants to sweep a cryptic patient out of the way, but it is of no benefit to the patient if it results in permanent disability from delaying proper treatment.

Tags: CFS, therapy, therapist, neuropsychology, neuropsych, virus, depression, anxiety, pacing, testing, memory