Sunday, August 8, 2010

What do we have if we do not have CFS?

I have always despised the concept and name “chronic fatigue syndrome,” created in 1988 to describe a group of patients who had previously been thought to have “Chronic Epstein-Barr Virus.” “CFS” is not scientific. It is a social construct, a shape-shifter, something that gets redefined as those in a position of power, or society at large, wish to redefine it. But it had one advantage. It helped researchers study a group of patients who have been sick for decades with a mysterious, apparently contagious, disease. It helped researchers define subgroups of patients who exhibited similar patterns of biomarkers and pathogens. If CDC defines CFS so that those patients are no longer considered to have the disease, then what can we say they have? And what is left that can be called “CFS”? Why would we study CFS at all?

Defining CFS so that it no longer fits “CFS” patients


In the late 1990s, it had become clear that “chronic fatigue syndrome” had been polluted as a research term because there were so many different – often conflicting – definitions in use. How could you compare a study conducted using patients from Simon Wessely’s psychiatric practice at King’s College, London – where patients with confirmable physical ailments were turned away – with a study conducted using patients from Dr. Dan Peterson’s practice at Incline Village, NV, one of the most-studied sites of a cluster outbreak in the 1980s? Over time Dr. Peterson and others had found tests that distinguished the cluster-outbreak patients from those with simple “chronic fatigue” – low natural killer cell function; the 37kDa Rnase-L defect; SPECT scan abnormalities; extremely low VO2 Max stress test scores; viruses such as EBV, HHV-6, and cytomegalovirus. Other researchers have found mycoplasma infections, mitochondrial dysfunction, abnormal immune cell ratios, NMH/POTS; myocarditis. The list goes on. Formally, they were all using the CDC’s 1994 Fukuda definition in their research, but practically speaking, the patients came from practices where clinicians had seen chronic fatigue syndrome in cluster outbreaks.

The result is research that defines subgroups of patients with patterns of biomarkers and pathogens. In fact, this was how Dr. Fukuda had imagined research would proceed with CFS. In the 1994 article that introduced what is called the “Fukuda definition” to the world, he wrote that “additional subgrouping or stratification of study cases into more homogeneous groups is necessary for comparative studies.” An entire section of the short (6-page) article was devoted to “Subgrouping and Stratification of Major Classification Categories”:

"In formal studies, cases of the chronic fatigue syndrome and unexplained chronic fatigue should be subgrouped before analysis or stratified during analysis by the presence or absence of essential variables, which should be routinely established in all studies. Further subgrouping by optional parameters can be performed according to specific research interests."

But CDC has steadfastly ignored that mandate. Instead of studying evidence of subgroups, CDC would take each new biomarker or virus, run a small study that sometimes even didn’t even test for the right laboratory finding, and then announce to the public that X or Y or Z was not “the cause” of “Chronic Fatigue Syndrome.” The Fukuda article is referenced only for the research definition – not for the imperative to subgroup into homogeneous classes. Most patients, clinicians, and researchers are probably unaware that the article even mentioned – let alone emphasized – the need to define homogeneous subgroups.

Twenty-five years after CDC was first asked to examine cluster outbreaks of the disease they would later name “chronic fatigue syndrome,” the website states as the first obstacle to diagnosis:

“There's no diagnostic laboratory test or biomarker for CFS.”

That simple statement shows the extent to which CDC missed the point of the Fukuda article. Fukuda assumed there would be no such tests that would hold for everyone. The tests would define subgroups.

Today on CDC’s website you will find an entire paragraph devoted to the testing that has identified the subgroups Fukuda envisioned – but CDC’s approach could not be further from what he had described. Some are listed as exclusions; others as experimental. In the latter case, one wonders how long after peer-reviewed publication does information continue to be viewed as “experimental.” Much of this information was first published 15 years ago. Perhaps more to the point, denying patients access to this testing also results in denying them access to treatment that has been found successful for patients who have such biomarkers or pathogens.

CDC’s emphasis on one test-one result also denies the reality that most patients with “CFS” (according to the original definitions) have more than one thing wrong with them. But there is no way to tell that from the CDC website (See

http://www.cdc.gov/cfs/general/diagnosis/testing.html
)

"A number of tests, some of which are offered commercially, have no demonstrated value for the diagnosis of CFS. These tests should not be performed unless required for diagnosis of a suspected exclusionary condition (e.g., MRI to rule out suspected multiple sclerosis) or unless they are part of a scientific study. In the latter case, written informed consent of the patient is required. No diagnostic tests for infectious agents, such as Epstein-Barr virus, enteroviruses, retroviruses, human herpesvirus 6, Candida albicans, and Mycoplasma incognita, are diagnostic for CFS and as such should not be used (except to identify an illness that would exclude a CFS diagnosis, such as mononucleosis). In addition, no immunologic tests, including cell profiling tests such as measurements of natural killer cell (NK) number or function, cytokine tests (e.g., interleukin-1, interleukin-6, or interferon), or cell marker tests (e.g., CD25 or CD16), have ever been shown to have value for diagnosing CFS. Other tests that must be regarded as experimental for making the diagnosis of CFS include the tilt table test for NMH, and imaging techniques such as MRI, PET-scan, or SPECT-scan. Reports of a pathway marker for CFS as well as a urine marker for CFS are undergoing further study; however, neither is considered useful for diagnosis at this time."

While these tests might not be useful in “diagnosing” a single entity called "CFS", they are very useful in understanding and treating CFS. I have three of the four pathogens mentioned. I also have cytomegalovirus (CMV), which I imagine CDC considers exclusionary for CFS. I am abnormal in testing for three of the four immune markers mentioned plus the 37kDa Rnase-L which is listed there as a “pathway marker for CFS,” I have NMH; and I have abnormal SPECT scans.

More to the point, there is a subgroup of patients within the larger CFS-diagnosed community whose testing turns out almost identical to mine. So researchers identify a subgroup, but instead of using that to benefit patients, CDC insists it is either unrelated to CFS, or exclusionary for CFS.

Furthermore, the pattern of biomarkers and viruses - not a single test – is critical for understanding various subgroups that could now be defined empirically, if CDC permitted it. And by listing everything as if each was a single test, and each test represented a different disease, CDC effectively misleads anyone who comes to their website seeking an understanding of “CFS.”

I fit quite neatly into a subgroup of CFS patients who were caught up in a cluster outbreak in the north Tahoe area of Nevada in the winter of 1984-85. The Holmes definition of 1988 and the Fukuda definition of 1994 were both explicitly intended to describe those patients. When Congress voted for research funding and an advisory committee (today's CFSAC) for “CFS” in the Department of Health and Human Services, they did not mean for these resources to go to just any old thing CDC wanted to call “CFS” – they wanted to find answers for the people who got sick in the 1980s, and later, with a disease that appeared similar among oubreaks.

We have reached a point where CDC explicitly defines CFS to exclude the very patients they were charged with helping.

If the patient representatives on the CFSAC do not have “CFS” according to CDC’s restrictive parameters; if the researchers on CFSAC do not study “CFS” according to CDC’s website; if clinicians on CFSAC do not treat “CFS” as defined by CDC – precisely what is CFSAC supposed to do?

The issue is about to come to a head.


CDC insists that XMRV is not “the cause” of CFS. According to a reporter from the New York Times a month after the Science study had revealed the discovery that 2/3 of a sample of CFS patients had tested positive for the new retrovirus:

"Among those expected to try to replicate the XMRV findings is the Centers for Disease Control and Prevention. But Dr. William C. Reeves, who directs the agency’s research on the syndrome, has said that he does not expect to find the virus in blood samples from patients. He said that no other studies had ever proved a virus to be the cause, and that stress and a history of sexual and emotional abuse were more likely to play a role in many cases."

True to his prediction, when Reeves did publish a study on XMRV, he did not find any of the virus at all (despite consistent findings in earlier prostate cancer studies that 2-4% of controls had the retrovirus).

It now appears clear that if the scientific community accepts XMRV as the third known human retrovirus, CDC will simply define CFS so that it is not related to XMRV – they will simply add XMRV to that paragraph that lists all of the testing that is “inappropriate” for CFS. Thus Reeves will always be right when he declares XMRV to be unrelated to CFS - because CDC will redefine CFS such that XMRV by definition will be unrelated to it.

I was in the Science study and I was positive for XMRV. So I’m out of the CFS club, it appears. But I was already kicked out by virtue of testing positive for so many viruses and biomarkers. More to the point – if CDC defines CFS in such a way that the very patients it was created to describe no longer fit the description, what is the point of having a disease category called CFS in the first place? What is the point of a division of CDC devoted to CFS studies? What is the point of an advisory committee at DHHS to coordinate agency activities regarding CFS?

From the beginning, “chronic fatigue syndrome” was a disastrous name chosen to replace “Chronic Epstein-Barr Virus” back in 1988. It could not have been more dismissive if it had been chosen by a focus group. “Chronic” as in “chronic complainer” and “chronic whiner;” “fatigue” as in “yeah, I’ve been tired lately myself;” and “syndrome” as in “syndrome of the month.” In the first decade of the name, comedians had a field day with it. As recently as this year, a popular comedy show in England mocked the name and the disease.

Researchers familiar with the disease known as Myalgic Encephalomyelitis (M.E.) in England and old Commonwealth nations, and Epidemic Neuromyesthenia in the U.S., expressed the opinion at the Holmes meeting in 1988 that the disease was most likely M.E. (Epidemic Neuromyesthenia was no longer being diagnosed). But that information was not even included in a footnote.

M.E. would not be linked to the mysterious illness of the late 1980s as a possible biomedical explanation except in reverse. British psychiatrists eagerly grabbed the name “chronic fatigue syndrome” to portray M.E. as a psychogenic illness, “neurasthenia” (formerly known as “the vapors”). According to the British psychiatrists (Simon Wessely, Peter White, Michael Sharpe, Trudy Chalder, among others), patients with CFS had allowed themselves to become deconditioned because of “inappropriate illness beliefs.” A course of “cognitive behaviour therapy” (CBT), to teach the patient she wasn’t really sick at all, followed by “graded exercise therapy” (GET), to get her back into shape and on the job, was all that was needed.

British psychiatrists used a definition that omitted the sickest patients, excluded anyone with a physically diagnosable condition, and included patients with depression and anxiety disorders. Nothing could be further from the Fukuda definition – yet even today, because they say it is “CFS,” the media and many medical experts assume it is the same thing.

For years CDC used the Fukuda definition. Today, however, they use what can only be called the “Reeves” definition, after William Reeves at CDC, who created a set of questionnaires that he claimed “operationalize” Fukuda, but do nothing of the sort. The questionnaires – explicitly modeled after those used by British psychiatrists – define a population that is not severely ill, and contains patients who suffer mainly from depression or anxiety disorders. In short, CDC has moved to join the British psychiatrists in portraying the disease as psychogenic in origin – CDC uses the term “stress” instead of “neurasthenia” (because neurasthenia is not an accepted diagnosis by U.S. psychiatrists – it was omitted from DSM-IV, along with “hysteria,” because of the strong gender bias associated with the diagnosis). As Reeves told the reporter, CDC expresses the view that “a history of sexual and emotional abuse were more likely to play a role [than viruses or biomarkers] in many cases.”

Cognitive Behavior Therapy and Graded Exercise Therapy (CBT/GET) are now prominently displayed on CDC’s website as treatment for the disease. For a patient such as myself, who had viruses and immune defects, CBT is not going to bring about a cure. And for those of us who score abysmally low on the VO2 MAX stress test, GET is downright dangerous. But we are supposed to have been weeded out. Who is left?

How convenient to have a moving target, the social construct “chronic fatigue syndrome,” so that as research reveals the biomedical roots of the disease, CDC can maintain that it’s really caused by stress – having portrayed all the results of biomedical research as either inappropriate or useless. What good are thousands of refereed journal articles into biomedical causation (according to Harvard professor Anthony Komaroff) if CDC redefines the disease each time to exclude the new discoveries?

What the future will bring


As CDC’s pattern (and Reeves’ confession) make clear, patients with XMRV are going to be defined out of the CFS population. Will they have their own division at CDC? Will they have their own advisory committee at DHHS?

As researchers begin to study patients with XMRV formerly diagnosed with CFS, they will discover the patterns that CDC has heretofore hidden from public view – patients such as myself, with multiple immune defects, opportunistic viruses, and the resulting damage to the central nervous system, the brain, and multiple systems of the body.

What about those who do not test positive for XMRV? Will they be left behind, defined as having psychogenic CFS?

Or will the medical community come to its senses and realize that the real disease is in the patterns? Will they finally understand that the subsets of this disease were diagnosable with biomedical markers a long time ago?

If we do not have chronic fatigue syndrome, what do we have?

18 comments:

  1. Thank you so much for your blog today ... it voices my anger and frustration with this insipid diseases treatment by the CDC.

    So well put " If we do not have CFS, what do we have?"
    This is the answer that we all wait to hear.

    Can the CDC actually succeed at anything at all that is bio medically based ?

    How can they be the final word about disease control when they turn their backs on a disease growing unhindered right in front of their faces ?
    Do the members of the CDC think they have a magic coat of Armour that will stop this disease from affecting them and their families ?

    Let a Retrovirus go unchecked and sooner or later it will knock at every door.

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  2. Thank you Mary for this blog post and important message to em all.

    WIthin the Me/Cfs community, after getting to know my fellow ill friends, I don't want to left anyone behind in the hands of Reeves, Wessley and company.

    This is a world issue. Patients affected around the world pay a big price for Reeves and company at the CDC to manipulate us patients like puppets. It explains why our doctors want to prescribe anti-depressants, why no one wants to do a tilt test table, and why the emergency doctor doesn't understand what POTS is. We all understand why the XMRV studies are slow to come and why Dr Alter's study has been halted to a stop.

    It is a big conspiracy- built from the mid 80's and up, like a poorly constructed house of cards. I hope someone pulls a card from down low. And watch the spectacle. I am hoping for fireworks really soon.

    Kati

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  3. Every time the CDC's criminal actions are written,it becomes part of history. Thank you Mary. Someday we will get our justice.

    As for the fireworks, I hope all PWCs, or PW-Whatevers, stay calm, be patient, and let the science work for us. It will take longer than we want.
    Don't let the stress make you sick(er).

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  4. Thank you for so clearly articulating the damage the CDC and the psychiatric professionals are doing to ME/CFS/XMRV sufferers.

    I really liked the point you made that the CDC is no longer (if indeed it ever was) looking for a disease.

    So one must ask:

    What is the CENTRE OF DISEASE AND CONTROL's remit if not to look for disease? What business is it of theirs to look for or define a psychiatric illness?

    This is not why the American taxpayer is funding them.

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  5. I was also part of WPI's study and am XMRV positive. I don't use "CFS" anymore, I use XAND.

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  6. I was not part of WPI's study, but I did test culture positive to XMRV by VIP Dx. I am concerned about all the people who may well have XMRV but are not testing positive. Unfortunately, testing negative for XMRV does not mean the person does not have ME/CFS (from other viruses or retroviruses, perhaps) or even that they do not have XMRV because XMRV is such a hard retrovirus to locate in testing.

    Will these people, our fellow ME/CFS sufferers, be consigned to the oblivion of the CDC's wastebasket diagnosis? I am loathe to leave them behind.

    Patricia Carter
    www.mecfsforums.com

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  7. That section excluding all the tests clinicians who actually treat the disease use to help diagnose it was surely written just for the insurance industry. Anything that is "experimental" or "not useful" will not be paid for by insurance or Medicare, thus insuring that the patient impoverished by this disease will not get medical treatment for any of its symptoms.

    Someone needs to check into how the insurance industry is paying Reeves or his relatives to do this on their behalf.

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  8. What is the CENTRE OF DISEASE AND CONTROL's remit if not to look for disease?

    a) They are under covert operational control of the military and intelligence apparatus (Pentagon). Their mission is to cover up the real causes of diseases that originate from the government biological and chemical warfare.

    b) Another mission is to cover up or lend credence to false flag operations such as government created terrorism.

    An example

    solution: give americans accept intentionally tainted and toxic vaccines

    problem: create fake biological terrorist attacks

    NOTE: CDC would go along with false story

    reaction: fear is created in population so they voluntarily submit to vaccinations. Also it generates support for mandatory vaccination within the population


    What business is it of theirs to look for or define a psychiatric illness?

    The CDC is part of a military operation. They are also tasked with conducting psychological operation against the enemy. The enemy is unfortunately YOU - the ME/CFIDS patient.

    Note that NIH is also a covert military agency in actuality also.

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  9. correction

    >solution: give americans accept intentionally tainted and toxic vaccines

    solution: get americans to voluntarily take tainted and toxic vaccinations along with supporting mandatory vaccination laws

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  10. Dear Mary,

    Thank You for voicing the concerns of all of
    us that have been "defined OUT of having a biological illness" but we know differently
    and HAVE for the last 24 years...

    I hope this is getting your "Primed" to write your next CFSAC Testimony....

    I hear it's not Reeves any more but another guy (can't remember his name right off) that we have to worry about NOW...

    Sounds like you are feeling better if you were able to unload that off your brain coherently.

    New meaning for CDC:
    "Continuously Demented Cohort"

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  11. On your website under XMRV you state, "There is no way to underestimate the significance of this finding." I think you mean the opposite. It's actually *easy* to UNDERestimate the significance of anything ME/CFS related. That's been the problem with the medical community... they have UNDERestimated the significance of everything about ME/CFS. I feel sure you meant, "There is no way to OVERestimate the significance..."

    Thanks for all you do.

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  12. Chronic fatigue is prevalent with Social Anxiety Disorder. SAD has a incredible ability to be passed from one generations to the next. In a genealogical family line the disorder exhibits to the 7th generation.

    This family have CFS and SAD resulting in suicides, unemployables, agoraphobia etc.

    While in hospital on a anti biotic drip I felt remission more profound than taking seromycin used as a adjunct in cognitive therapy.

    If you feel this note has merit please pass to the specialist noted in your CFS piece.

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  13. Hello to all the other people out there who are only a shadow of the people they used to be! I really identify with the name of this blog. I used to constantly say that I felt dead or mostly dead.

    Anyway, I just wondered if anyone has tried taking olive leaf extract because I feel like it has really helped me. I feel significantly less dead than I used to. It is supposed to have antibacterial and anti-viral properties.

    At first it makes you feel a lot worse, so hang in there! It is supposedly cleaning all the bad stuff out of your body, and after a few weeks of that I felt good for a week and then two and then three and then a month and then dare I say it two months and so on. It has really helped me and it might help you!

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  14. I just thought too...

    Maybe it is a good thing if the people with what you are calling "The Disease," which I really like by the way, are being pushed out of the CFS definition since it is an erroneous and insulting label anyway, and as you said, what good does calling that do for all the millions of people suffering with it, especially when all those millions of CDC CFS funds, when not diverted or wasted, are just spent on studies proving it is not an illness at all, but again, just as we suspected with neurasthenia, a bunch of suggestible and hysterical women!

    If they push all the people with The Disease out they can name it something else and treat it as an actual physical illness and then CFS can just be the new catch all name for Major Depressive Disorder and Social Phobia, which is what they already seem to think it is, and they can treat it with antidepressants, cognitive behavioral therapy and graded exercise therapy!

    By the way, has anyone considered that neurasthenia could have been this virus? It is possible that it could have been around for a long time, and that all those sick people a hundred years ago weren't crazy either, just because their doctors didn't know what it was or how to treat it. Things have not really changed all that much.

    But of course by now everyone has read the August 23rd study by the NIH, FDA and Harvey Alter wherein we were all once again vindicated!

    The more proof we have the harder we will be to ignore!

    Congratulations to everyone, and thank you all for existing!

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  15. What an excellent post. Very strong thesis. I had no idea that Fukuda prescribed sub-grouping!!! (although i have read it several times and apparently forgotten)

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  16. Melanie, I agree. If the CDC is going to qualify us all out of their parameters for this disease, we have a right to re-define it for ourselves. They have spent the last 25 years marginalizing our health, our opportunities, our very lives. It's time to fight back.

    I am too young to remember what happened in the early days of HIV/AIDS patients- before HIV and AIDS had a name. I understand the stigma and struggle involved, but not precisely how it moved from a "gay man's disease," to AIDS. From what I've been able to learn, it seems that once patients started treating themselves (so to speak)- exactly what is starting to happen with this DD- the research moved ahead pretty quickly.

    I shudder to think what the CDC and UK's Ministry of Health have been trying to hide for all these years. Some days it is difficult to keep my imagination from running away from me. If the research on this DD from the last 20 years and the thousands of patients shouting over the internet as best they can (in various formats) isn't enough to finagle out the truth, what do they know that we don't? What is so important that it must be kept hidden for 60+ years?

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    ReplyDelete