I have FM and CFS but what is ME?

Discussion in 'Fibromyalgia Main Forum' started by Peace77, Jul 25, 2008.

  1. Peace77

    Peace77 New Member

    I have CFS, FM, sleep apnea, RLS, insomnia, protruding discs in lumbar and cervical spine, interstitial cystitis, IBS, arthritis, migraines and a torn tendon in r rotar cuff, but I don't know what ME is.

    Sorry to be so uninformed. Please describe the condition and direct me to any information you recommend. Thanks,
  2. Bluebottle

    Bluebottle New Member


    ME/CFS is an acquired organic, pathophysiological, multi-systemic illness that occurs in both sporadic and epidemic forms. Myalgic Encephalomyelitis (ICD 10 G93.3), which includes CFS, is classified as a neurological disease in the World Health Organization's International Classification of Diseases (ICD). Chronic fatigue must not be confused with ME/CFS because the "fatigue" of ME/CFS represents pathophysiological exhaustion and is only one of many symptoms. Compelling research evidence of physiological and biochemical abnormalities identifies ME/CFS as a distinct, biological clinical disorder.
  3. Peace77

    Peace77 New Member

    How is ME/CFS diagnosed?
    What does it mean to just have CFS?
    Is there a difference between CF and CFS?
    Doesn't CFS diagnosis go along with FMS and Myofacial pain syndrome?
    Thank you for definition, now I can look it up and do more research,
  4. mezombie

    mezombie Member

    One can fit the diagnostic criteria of M.E. as well as CFS, but it's entirely possible to have CFS and not meet the stricter criteria of M.E.

    "ICD-CFS" is a specific form of CFS classified by the World Health Organization under G93.3--the same classificaton as Myalgic Encephalomyelitis. Other "fatigue states" , including other forms of CFS, are excluded from the M.E. definition. (ICD stands for International Classification of Diseases).

    Here's some more information on the differences between CFS (especially as defined by the U.S. Centers for Disease Control (CDC) and Myalgic Encephalomyelitis:

    ME/CFS Explained: Clearing up the Confusion

    "Where the one essential characteristic of M.E. is acquired CNS [central nervous system] dysfunction,
    that of CFS is primarily chronic fatigue."

    Dr. Byron Hyde of the Nightingale Research Foundation makes the above very simple yet profound statement in his essay, The Complexities of Diagnosis (Chapter 3 in Handbook of Chronic Fatigue Syndrome). While just about all patients with M.E. will fit the definition for CFS, not all of those with CFS will fit the definition for M.E. (But technically, the CDC CFS definition excludes those patients with other serious illnesses that include fatigue as a symptom. Therefore a patient formally diagnosed with M.E., a serious neurological illness of CNS dysfunction - debilitating fatigue being merely one of MANY disabling symptoms - would be ruled out of the CFS definition. See Dr. Hyde's comment in sidebar.) If a patient does not fit the definition for M.E. and is given a diagnosis of CFS without further investigation into the cause of the symptoms, it would be tragic if a treatable illness was missed. And this has happened on numerous occasions (see below for examples). For a more complete understanding, see the Definitions pages, where the various definitions list diagnostic requirements.

    ME/CFS is described by some as a "medically unexplained" illness with no biomarkers. Do not accept this; it is far from the truth. The research cited on our Research pages and other websites, as well as specialized and more in-depth testing as suggested in the Consensus Document (listed on the Test Abnormalities page of this website) explain many of the symptoms ME/CFS patients suffer - tests that, when interpreted together, can give the patient and doctor a more complete picture of what's going on in patients' bodies. It may also help differentiate whether the patient has M.E., or chronic fatigue arising from some other serious illness that may be treatable.

    Descriptions are as individual as the patient

    There are as many descriptions of this disease as there are patients, because symptom prominence varies from patient to patient. But they all will have a common theme: crushing exhaustion that never goes away, no matter how much you rest; that the simplest things most people take for granted physically and mentally now seem like insurmountable tasks. For example, taking out the trash has become like a march up a mountain, or deciding what you need at the grocery store makes your brain swirl like a page-long physics equation. And once you have tackled one or two of those chores, you feel an overwhelming compulsion to lie down and rest, even though you know it will do little good. And usually there is widespread muscle pain that seems to radiate right out of the spine and into the muscles throughout some or all parts of the body. A severe hangover that never goes away, that varies in intensity day-to-day, even hour-to-hour, is how ME/CFS is often described, or "the flu that never goes away," year after year. Add to that many of the symptoms on the Symptoms List of this website - some coming and going or waxing and waning, others ever-present, always aggravated by tasks you used to give barely a passing thought to - and you have a person in a state of debility that has been compared by researchers and clinicians to MS, cancer and AIDS.

    Many scientists would describe ME/CFS in less personal, more technical terms. Words like "post-exertional malaise" and "neurocognitive impairment" sound fairly important, but simply do not convey what the patient is really experiencing. But the clinicians and researchers who have collectively worked with thousands of ME/CFS patients know that, "There is no word in the the English lexicon that describes the lack of stamina, the paucity of energy, the absolute malaise and turpitude that accompanies this illness." (-Dr. Charles Lapp-)

    Then what's the difference between M.E. and CFS?

    M.E. experts from the U.K., U.S., Canada, Australia and many other countries who have studied this disease have stated that it's the definitions that determine the diagnosis. The current Consensus Document and most M.E. definitions (Ramsay, Dowsett and historic) require the major criteria of severe muscle fatigue following minimal exertion with prolonged recovery time, and neurological disturbances, especially autonomic, cognitive and sensory functions, and variable involvement of cardiac and other systems, with a prolonged relapsing course. This is a very specific list of criteria, and a major point to note is that the CNS (central nervous system) dysfunction of M.E. can be measured. (See below.)

    Alternately, CFS definitions present the major criterion of fatigue that lasts 6 months and reduces the level of function by at least 50%. Post-exertional malaise and neurological abnormalities are considered minor and optional criteria. So this broad definition could encompass any of many illnesses in which fatigue plays a role. Fatigue is not only a symptom of numerous illnesses, but it is something experienced by normal, healthy people. And there are no reliable objective ways to measure fatigue.

    "The primary diagnostic criterion for M.E. is acquired CNS change. We have excellent tools for measuring these physiological and neuropsychological changes: SPECT, xenon SPECT, PET and neuropsychological testing.
    CFS patients may not have any of these findings...."

    Dr. Byron Hyde states that, "I do not describe a patient as having M.E. unless there is an abnormal SPECT. If the SPECT is normal, I often repeat it along with xenon SPECT. If the brain scans remain normal, I conclude that it is unlikely to be M.E. I then refer to the patient as a CFS patient and search for other causes of the fatigue syndrome." (See examples of SPECT, xenon SPECT and other neuroimages of ME/CFS patients on the Neurology Research page.)

    Dr. Hyde has described patients that have come to him with a "CFS" or psychiatric diagnosis that he has investigated more thoroughly. Some he has diagnosed with M.E. after thorough interview, including determining acute or gradual onset, neurological, cardiac and other screening. But in many others he has found underlying, treatable causes for their debilitating fatigue. Some examples he gives are:

    1) One man came to him diagnosed as a psychiatric patient which Dr. Hyde initially agreed with, due to the man's obvious irrational behavior during Dr. Hyde's interview with him. The man said he slept a lot, was still tired after sleeping and felt he had "chronic fatigue syndrome," since he met the CDC CFS case definition criteria. Dr. Hyde simply listened to the man and observed his behavior over the course of two hours. He gave the man a requisition for a few tests which within days revealed he was severely diabetic with extreme hyperlipidemia (high cholesterol/triglycierides, etc.). Within weeks of beginning treatment, the man was behaving rationally, and it was further determined he had had a recent myocardial infarction (heart attack).

    2) A woman from the U.S. who had been diagnosed with "CFS" by several ME/CFS physicians came to Dr. Hyde with significant brain dysfunction and overwhelming fatigue. He had Doppler tests done on her the same day that found "80% obstruction of both internal carotids, and complete obstruction of the basilar artery feeding the brain." Internists, neurologists and ME/CFS specialists in the U.S. had all missed the obvious. "The obstruction in one of the arteries was removed and she improved."

    Drs. Hyde, Dowsett and others state that doctors should also take a complete patient history to determine other significant factors that distinguish M.E. from CFS and other fatiguing illnesses. (See sidebar)

    Source: name-us.org
  5. Peace77

    Peace77 New Member

    I've learned a lot. I'm grateful for the energy you put in here. Thank you for not thinking it was a dumb question. I hope all who have ME will find a cure.

    I don't know as much about CFS as I do FMS. Just figured if you have FMS you have CFS. I know FM has more pain and CF has more malaise. My pain is great about equal to my fatigue. I should study more about CF though and maybe help myself.

    Have a sunshinny day,
  6. marti_zavala

    marti_zavala Member

    you asked:
    How is ME/CFS diagnosed?
    What does it mean to just have CFS?
    Is there a difference between CF and CFS?
    Doesn't CFS diagnosis go along with FMS and Myofacial pain syndrome?

    ME/CFS is a diagnosis of exclusion. It is based on cliinical symptoms but I believe that we will soon have a test(s).

    CF is not the same as CFS. Many illnesses have a CF component. CF means fatigue but CFS means some other systems are broken - thyroid, adrenal, detoxification in addition to fatigue (usually denoted as post exertional malaise)

    I think some with CF really have CFS (unless there is a known cause such as CF from cancer).

    CFS is not the same as FMS or Myofacial pain syndrome. But there is enough overlap to muddy the waters. You can have one without the other or have them together.

    I got sick for the very first time as classic CFS (I prefer the term ME/CFIDS) in '99 with ME/CFIDS only - no FMS.

    I relapsed in 2003 and developed FMS plus some other stuff.

    Since I got them at different times, I feel that I know the difference intimately. I wish I didn't have either.

    There is no such thing as a dumb question. Here is the best place to learn.

    Here is one of my favorite websites on ME/CFS:


    This is my opinion, may not mean much.

  7. Peace77

    Peace77 New Member

    Thank you for taking the time to explain those sensitive topics. How do I find out if I have CFS with my FM? Most drs. won't tease them apart if I ask them. They'l probably say there's no reason to do a test. But if there is something I can do for the CF symptoms I'd like to be able to address them.

    That's unfortunate you have them both. I hope you're battling them well. You sound very informed.

    What treatments do you get for your CFS? Do you also have sleep apnea , RLS or insomnia of any type? I have all that.

    I will look up those websites soon,
    Gentle Hugs,
  8. Janalynn

    Janalynn New Member

    I would not automatically assume you have CFS just because you have FM. I shouldn't say "you". You very well may have CFS, but because you have one does not mean you have the other - although it is common.

    I have FM, not CFS. I have severe fatigue sometimes, but not to the degree that many of the people here describe. I do not know enough about CFS - but from what I've read here and elsewhere, I think it does have some symptoms that are unique and separate besides the fatigue and overlapping symptoms of FM.

    I believe the kind of fatigue is one of those things. The post-exertion fatigue (is that right???).
    Also do people with CFS have sore throats, swollen glands etc.? Hopefully someone with CFS can answer.

    I saw my rheumatologist(very experienced in FM) the other day and explained that after my vacation last month, during which time I relaxed and felt well, I came home and was OUT for almost 5 days. I was exhausted - just zapped of all energy - was on the couch the whole time. He said that wasn't uncommon. As I said, I do not have CFS.