# Defining and explaining M.E. and CFS - A brief history



## M&M (Jan 20, 2002)

This thread is not intended to start or spark a debate of any kind; I simply wanted to provide some brief background information for those interested. In view of this, I am providing a brief, factual history of what M.E. is, and how and when the term and definition of CFS came into existence. M.E. (Myalgic Encephalomyelitis) is a distinct neurological disease that has been recognized by the World Health Organization (WHO) since 1969. It is classified in the current WHO International Classification of Diseases with the neurological code G.93.3. This recognition emerged from meticulous clinical observation and examination. It occurs in epidemic and sporadic forms, and over 60 outbreaks of M.E. have been recorded worldwide since 1934. The term M.E. was coined in 1956, and has been confirmed by findings of brain damage and spinal cord inflammation in autopsies of M.E. patients.The primary symptoms of M.E. are neurological, cardiac, cardiovascular, cognitive, metabolic, respiratory, hormonal, immunological, gastrointestinal and musculo-skeletal. It is a testable and scientifically measurable disease, and there is a large body of mutually supportive research and clinical information on the disease.There was an outbreak of M.E. in Lake Tahoe (US) in the 1980's. Sadly, at that time, a group of US scientists was convened, and they came up with not only a new name for an old disease, but a new definition as well. Thus, in 1988, the CFS label was born. Not content with simply changing the name to CFS, the scientists involved also changed the case definition, instead of focusing on the testable findings and defining symptoms of neurological and cardiac origins, they actually shifted the focus on to an "unexplained" fatigue. In so doing, the researchers took away any medical significance CFS could possibly have - if a patient is found to have something organically wrong with them causing the fatigue (anemia, depression, thyroid dysfunction, cardiac disease, etc) they no longer qualify for a CFS diagnosis. CFS is only "medically unexplained fatigue". In defining it this way, researchers have made it a wastebasket diagnosis that means nothing. According to the case definition, if you have something wrong with you, you don't have CFS, conversely, if you have CFS, there is nothing wrong with you. Clearly, a CFS diagnosis according to that definition is harmful to everyone.For this reason, it is not simply an issue of using the right name or label for this disease, as the actual definition of the illness was changed. It's the definition (or diagnostic criteria) that is the key issue for patients and doctors. By redefining the illness in such a vague way, the CFS patient population is now a mish mash of fatigued people, rather than patients who have been thoroughly diagnosed with the same distinct disease process. The CDC itself has admitted that ambiguities in the CFS research definition contribute to inconsistent case identification, again demonstrating that the problem is not an issue of names or labels, but rather an issue of improperly defining an illness.Properly understanding these issues has a big effect on how we all view the research being done on CFS or M.E. Are such researchers investigating people with a specific, distinct disease? Are such researchers investigating people who are simply fatigued healthy people? Are researchers investigating people who qualify for the broad, wastebasket diagnosis of the invented CFS protocol, but truly have any number of other diseases and disorders? Can the research actually amount to any kind of reliable result? The following referenced excerpts provide a bit more information on the subject. They will also show that what we should be concerned about isn't the label, or name, put on an illness. We should be concerned with how an illness is defined. The definition of the artificial construct CFS was never meant to be treated as a disease entity, sadly however, it has been treated as such, and in so doing, patients diagnosed with CFS and patients with M.E. have all been misunderstood and mistreated."It is the CFS definitions themselves that give rise to this inaccuracy. Consider the following: 1) What other physical disease definitions essentially state that if you discover the patient has any physical injury or disease, then the patient does not have the illness CFS? In other words if you have CFS then it does not result in or cause any major illness. What else could CFS then be but any number of various psychiatric, social, hysterical or mendacious phenomena? 2) The various CDC administrations dealing with the subject have clearly stated that CFS is a physical, not a psychiatric disease. However, is there any other definition of any physical disease that is not provable by scientific and clinical tests? Only psychiatric diseases are not clearly verifiable by physical and technological tests. 3) What other physical disease definition requires a 6-month waiting period before the illness can be diagnosed? Any physician knows that to treat a disease adequately you have to be able to define the disease at its onset and treat it immediately in order to prevent chronic complications from arising. To my knowledge, in the entire history of medicine, there are simply no other disease definitions that have ever been assembled with a structure similar to the CFS definitions. 4) If you are still not convinced, check the Internet for the definition of: DSMIII Somatization Disorder. (DSM) You will find that there is little substantial difference to distinguish the DSMIII definition from the 1988 and 1994 CDC definitions of CFS. It is difficult to believe that the CDC medical bureaucracy is not aware of this similarity. It is thus understandable why the insurance industry, as well as some psychiatrists and physicians, have simply concluded that CFS, if it exists, is a somatization disorder."Reference link: http://www.nightingale.ca/documents/Nighti...finition_en.pdf"A New Definition of CFS - Given there have been at least seven definitions of CFS (the 1988 Holmes, the 1994 International (Fukuda), the 1991 Oxford, the Lloyd, the 2003 Canadian Consensus, the 2007 IACFS Pediatric definition) one might be forgiven for wondering what's the big deal? The big deal is that it's the CDC that's doing it and historically the CDC definitions have stuck. Except in the UK almost all CFS research studies use the CDC sponsored 1994 International definition to determine who they will study. Why be worried about a definition of CFS? Researchers prove their cases by using statistical tests to compare the differences between a sick group and a healthy group. If CFS isn't defined properly and study groups contain both CFS patients and other types of patients then neither type will be well elucidated. Instead of finding clear differences the studies will get a mishmash of results - sometimes significant (positive), sometimes not - a difficulty that has permeated some areas of CFS research. Some researchers believe that progress in CFS research will be slow and plodding until researchers find a way to produce to coherent sample sets, which requires first an adequate definition...An Important Recommendation. In 2001 the CDC brought together an international consortium of researchers, physicians and CFS experts (ICFSWG) to advise them how the definition should be altered. That group met three times and announced its findings in a 2003 paper. The ICFSWG and the CDC came to three major conclusions: (1) The Current Definition of CFS is Fatally Flawed: Comparison studies indicated that the International definition does a poor job in picking out the more severely ill 'CFS patients' and that the patients it does pick out often don't qualify for CFS for long. Ultimately Dr. Reeves came to have so little faith in the International definition that he said the current practice of simply stating that individuals meet the 1994 CDC definition is so vague that 'it is essentially impossible to compare results between studies critically'. Reference link: http://aboutmecfs.org/Rsrch/DefiningCFSI.aspx"The physician and patient alike should remember that CFS is not a disease. It is a chronic fatigue state as described in four definitions starting with that published by Dr. Gary Holmes of the CDC and others in 1988 (Holmes, Kaplan, Gantz, et al., 1988; Holmes, Kaplan, Schonberger, et .al., 1988). The definition created by Lloyd, Hickie, Boughton, Spencer, and Wakefield (1990) is also widely used in Australia. There are two subsequent definitions. The Oxford definition of 1991(Sharpe et al., 1991) and the 1994 NIH/CDC definitions (Fukuda et al., 1994) are basically, with a few modifications, copies of the first definition. Where the one essential characteristic of ME is acquired CNS dysfunction, that of CFS is primarily chronic fatigue. By assumption, this CFS fatigue can be acquired abruptly or gradually. Secondary symptoms and signs were then added tothis primary fatigue anomaly. None of these secondary symptoms is individually essential for the definition and few are scientifically testable. Despite the list of signs and symptoms and test exclusions in these definitions, patients who conform to any of these four CFS definitions may still have an undiagnosed major illness, certain of which are potentially treatable. Although the authors of these definitions have repeatedly stated that they are defining syndrome and not a specific disease, patient, physician, and insurer alike have tended to treat this syndrome as a specific disease or illness, with at times a potentially specific treatment and a specific outcome. This has resulted in much confusion, and many physicians are now diagnosing CFS as though it were a specific illness. They either refer the patient to pharmaceutical, psychiatric, psychological, or social treatment or simply say, "You have CFS and nothing can be done about it." The CFS definitions have another curiosity. If in any CFS patient, any major organ or system injury or disease is discovered, the patient is removed from the definition. The CFS definitions were written in such a manner that CFS becomes like a desert mirage: The closer you approach, the faster it disappears and the more problematic it becomes...However, there are four essential differences between ME and CFS that are perhaps more important than any of the preceding differences:1. No one in composing the two CDC definitions told anyone not to investigate the CFS patients during the first 6 months of illness; they simply stated that the CFS is characterized by an illness of 6 or more months of chronic fatigue. Undoubtedly, it was unintentional. Yet obviously CFS following infectious disease begins in day one of the first 6 months or even in the days before this initial period. Researchers into CFS have simply avoided that essential area. The inception of an illness is always the most fertile area of research into cause and pathology.2. Organ disease in CFS has been avoided. By definition, it does not occur. If significant primary or secondary organ disease occurs, then this would be a cause of the fatigue and the illness would not be CFS (Fukuda et al., 1994).3. The inventors of the second CDC CFS definition laid out certain guideline examinations (Fukuda et al., 1994). They never stated that no other testing should be done, but for all purposes, these very preliminary tests have been used for inclusion guidelines in CFS research papers. Research physicians have apparently forgotten that we do not know what CFS is from a pathophysiological basis. For this reason, not only have most physicians avoided exhaustive testing but many have decried exhaustive testing as foolish.4. This is the most important essential difference. Nowhere in any of the four definitions of CFS is there a discussion of acute versus gradual onset illness. This has allowed physicians to include any patient who fits the 1988 or 1994 or U.K. definitional characteristics into the CFS illness spectrum. Because none of these definitions mentions gradual onset CFS disease, gradual onset patients, as a group, not only fit the four definitions but also totally obstruct CFS as a disease category. The reason for this statement is simple. Gradual onset CFS frequently represents non-diagnosed major disease or pathophysiological anomaly. Many patients with a diagnosis of CFS today have non-diagnosed major diseases. These patients warp any statistical or scientific examination of the CFS patient. Most of the patients I have seen from Canada, the United States, or from the United Kingdom with gradual onset CFS illness have non-diagnosed major medical illness or anomaly. This fourth essential difference defines the cornerstone of investigation of much CFS."Reference link: http://www.nightingale.ca/documents/Comple...ofDiagnosis.pdf"There is no such disease(s) as CFS. Fatigue is a common component of normal life not always relieved by 'rest' unless that means a prolonged holiday or stay in a sanatorium/asylum - ask any harassed mother of a large family! Fatigue is a common component of any infectious disease eg: Bacterial (tuberculosis) or Viral (influenza) and thousands of others including AIDS, Lyme disease, syphilis, Hepatitis A etc. Fatigue is a common component of any prolonged physical stress (lack of sleep, care of the seriously ill, shift work etc)."Reference link: http://www.25megroup.org/Information/Medic...20and%20cfs.htm"The disease category of 'CFS' was created in a response to an outbreak of what was unmistakably M.E., but this new name and definition did not describe the known signs, symptoms, history and pathology of M.E. It described a disease process that did not, and could not, exist...The new name and case definition for 'CFS' was created in the US in 1988 by a board of 18 members, few of whom had either looked at an epidemic of M.E. or examined any patients with M.E. Two of the most experienced members of the board refused to sign the final document and withdrew from the (CDC) definitional committee because the proposed new name for the illness and the definition that went with it were just too different from the Myalgic Encephalomyelitis with which they were so familiar (Hooper et al. 2001 [Online])...Chronic Fatigue Syndrome is an artificial construct created in the US in 1988 for the benefit of various political and financial interest groups. It is a mere diagnosis of exclusion (or wastebasket diagnosis) based on the presence of gradual or acute onset fatigue lasting 6 months. If tests show serious abnormalities, a person no longer qualifies for the diagnosis, as 'CFS' is 'medically unexplained.' A diagnosis of 'CFS' does not mean that a person has any distinct disease (including M.E.). The patient population diagnosed with 'CFS' is made up of people with a vast array of unrelated illnesses, or with no detectable illness. According to the latest CDC estimates, 2.54% of the population qualify for a 'CFS' (mis)diagnosis. Every diagnosis of 'CFS' can only ever be a misdiagnosis..." Reference link: http://www.hfme.org/whobenefitsfromcfs.htmFor more information on the need to be well versed on these topics when considering any kind of research, advocacy and everything they each entail, see the article "A warning on 'CFS,' 'ICD-CFS' and 'ME/CFS' research and advocacy" here: http://www.hfme.org/warningoncfsresearch.htm


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## BQ (May 22, 2000)

Wow M&M! Thanks for all of this info. I had no clue! A few questions though if you could help me out here.First of all could you just share with us the diagnostics currently used to arrive at an ME diagnosis?On this:


> However, there are four essential differences between ME and CFS that are perhaps more important than any of the preceding differences:


1. You told us what they designated as a time frame for fatigue for the CFS dx but what is it then for ME? Are symptoms seen immediately after one gets it or what? And is there a time frame of onset of certain symptoms currently used when diagnosing ME?2.Does Organ disease occur in ME? And if so.. in which organs typically or is non-specified and depends on the individual patient?3. What are the guideline examinations for ME?4. Does ME typically come on acutely or gradually? Or does it again depend on the individual's case?I have to admit it took me two sittings to read all of this... sorry to say.







However I think it _is_ important and valuable information. Of course it is to those considering various research protocols but also it is informational in nature. And the distinction between the two I think would be good for anyone with it or anyone who knows someone with it to possess.So with that in mind... I was wondering if it would be possible to thumbtack this to the top of this forum so other's can see it and have access to it?Thanks in advance!BQ


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## M&M (Jan 20, 2002)

Excellent questions! I'm happy to answer them. The most current and best definition (or diagnostic criteria) of M.E. is the Nightingale Definition. It's a pretty long document, so won't post it, however here is a link to it:http://www.nightingale.ca/documents/Nighti...finition_en.pdfI feel like that document will probably answer all of your other questions too (better than I can at least), as it's very detailed. But I'll try to give a brief answer here, in case you (or anyone else) are pressed for time or energy. =)1. There is not a designated time frame for diagnosis, nor any kind of necessary "waiting time" to diagnose M.E. M.E. is caused by a viral infection that leaves damage in its wake, so as soon as the damage appears in the brain it can be spotted by the correct testing. In a sense, you could equate it to breaking your arm. Your arm breaks as soon as the trauma/injury occurs, and at that point the damage can be seen on an X-ray. A patient who has the specific kind of damage that is seen in M.E. patients doesn't need to wait to see what happens, once the damage is there, it's there.That said, the damage to the brain is not exactly the same in every patient. Some patients have damage to only 1 cortex, some have damage to both cortexes. Some patients, if diagnosed quickly and put on the proper treatment protocol, can regain function - as the brain is able to "reprogram" itself after injury in some cases. Those old connections can re-route themselves and regain use with proper treatment. In some patients, the damage is too severe to be able to reprogram the brain connections, so they cannot recover much function. In patients who haven't been properly diagnosed, they can actually suffer further damage from improper treatment, so they actually get worse rather than regain any kind of previous function.2.	Yes, organ disease is present in M.E. patients. The majority of the abnormalities are seen in the brain and brain stem. There is also spinal cord inflammation found. The extent of damage does depend on the individual patient, but the brain stem is always damaged in M.E. patients. Even though the damage is primarily to the brain, since that controls every bodily function, just about every body system is involved. The other major damage seen in M.E. patients is skeletal damage and damage to the heart muscle. Mitochondrial abnormalities (as well as many other abnormalities) are also seen in M.E. patients, but I suppose that doesn't specifically fall under the category of organ disease. So, as far as that goes, we can basically say the brain and the heart. (ETA: Also, in long term M.E. patients - those who have had M.E. 10 years or longer - thyroid damage is often seen.)3.	The testing/exam guidelines you can also find in the M.E. definition above, but will list a few here briefly. A variety of scans that can identify and diagnose M.E. patients: SPECT and xenon SPECT scans (these show an incredibly similarity between M.E. and M.S. patients, in fact, M.E. was also once known as "atypical MS" due to the striking similarities seen in these scans) - these detect decreased circulation in very specific areas of the brain. MRI scans can show the presence of small white matter legions primarily in the frontal lobes and subcortical areas. PET scans have shown decreased metabolism of glucose in the right mediofrontal cortex.Other tests that show specific abnormalities are: EEG and QEEG brain mapping, Romberg or tandem Romberg testing, various immune tests, insulin levels/glucose tolerance tests, 24 hour Holter monitor test, tilt table exams, Q scores, chemical stress test, circulating blood volume and various other physical exams that can be done in the office.4.	M.E. is always only acute onset. Since M.E. is damage left behind by a viral infection, it is always acute onset. This is an easy way to help quickly distinguish someone who doesn't have M.E. Many patients can actually pinpoint an exact date of onset because it was so noticeable. Some patients suffer from a series of viral infections, so perhaps can't note a specific date of onset, since they were fighting one infection after another. Some also do not have severe symptoms at first, so may not be able to pinpoint the date of the damage left behind as much as those who have severe damage. Over time, and without proper treatment, their damage/symptoms may worsen, so they only seek treatment after time, however the actual onset is always acute. Maybe pinning this topic would be good. Would at least save me from typing it again, or searching for it again. Lol That's a good suggestion.I also want to thank you and everyone else who took the time to read this information. Obviously, this is a topic that I am very passionate about, but I certainly don't expect anyone else to be passionate or even interested in it if it doesn't affect them personally. But, at least the information is here now, just in case anyone needs to (or wants to) reference it!


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## BQ (May 22, 2000)

Ok Great! Thanks for answering my questions! A stupid virus causes all of this mayhem then? Man... this is kinda awful. I have much sympathy for those of you with ME. And.. I wish we could get a vaccine for that virus and a cure for you all!Yes M&M I think it would be great if you could pin it to the top of the page and I appreciate all of the work that went into this thread so thanks very much!BQ


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