ME/CFS Self-Care : The Basics

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Last Updated: 10 December 2015 10 December 2015

by Howard Bloom

The Chronic Fatigue Syndrome/Chronic Fatigue and Immune Dysfunction Syndrome/Myalgic Encephalopathy (CFS/CFIDS/ME) is something each of us must fight in our own way, based on our own unique symptoms and circumstances. But there are some "self-­management" principles that apply to all of us, and that are especially important for newly diag­nosed patients to understand. This article is my attempt to share some of the guidelines I have developed over nine years of personally fighting this disease. By applying them, I have been able to achieve a great deal, despite being largely bedridden. With the following advice, I hope that you too can maximize what you are able to achieve within your own constraints.

First, before assuming CFS/CFIDS/ME is the cause of your symptoms, have you been rea­sonably tested to rule out other plausi­ble illnesses? This is a step recommended in all the literature (and required in the Centers for Disease Control and Prevention (CDC) diagnostic criteria), since many other diseases can mimic CFS/CFIDS/ME symp­toms.

A word of caution, however. Doctors' visits and tests can demand a great deal of time and energy—commodities that a person with CFIDS lacks. With­draw more than you have in your energy "bank account," and you will make yourself worse.

The "overdraft relapse" may not be evident for two days or for two weeks, but you can be sure it will occur—and it can range from somewhat in­creased pain to long-term incapacitation. Thus, the best, most well-intentioned doctor can some­times become your worst enemy—if you don't communicate your limits (how often you can make it to appointments, what times of day you typically feel best, etc.).

While there is currently no cure for CFIDS, skillful self-management (and appropriate medical treatment) can al­low you to function optimally within your new, more limited capabilities. Charles Darwin, who suffered from a dis­ease greatly resembling CFS/CFIDS/ME, re­searched, wrote, and aggressively pro­moted his theories of evolution while confined to his cottage, unable to attend the meetings of the Royal Society that would determine his brainchild's fate. Florence Nightingale also suffered from a CFIDS-like illness that forced her to do most of her major organizational work while confined to home, and severely lim­ited her social activity (e.g., she allowed only one visitor at a time).

The trick— and it is far, far harder than it sounds—is to "know thyself." Recognize that your illness has created new boundaries that you cannot push through—and a new set of rules gov­erning behaviors and activities that you previ­ously took for granted. Many of the truths you must learn about your "new" self will be hard to absorb and harder still to accept. Chronic illness of­ten brings with it a virtual reinvention of iden­tity. As with any loss, you may find that you go through a period of mourning for your lost abili­ties before you can fully face the reality of your current illness. With few exceptions, the basic rule is to learn your new limits and do not ex­ceed them, or you will pay dearly.

Think again in terms of having an energy bank account with very small balance. You must become aware of every penny of energy you ex­pend during the day. You have no passbook, so you must determine your balance through contin­uous self-assessment to ensure you do not over­draw your account.

As you go through your daily activities, imagine you are wearing a pedometer and keep a weather eye on it. The "mileage" of seemingly simple activities like walking up the stairs, moving from room to room, carrying and lifting—and just sitting up—can add up quickly to more than you can handle. Even talking and listening to others, however pleasur­able, are also extremely taxing to persons with CFIDS.

Therefore, to reduce your energy expenditure—to keep the mileage as low as possible on your "pedometer"—get others to fetch things for you (and do other chores for you) when possible. Sit when you do things that you might ordinarily do while standing up, such as brushing your teeth.

Take baths rather than showers so you can re­cline. And, when feasible, shift to the bed or a horizontal couch when doing activities you may have traditionally done sitting up.

One factor an actual, literal pedometer can't measure, but that a CFS/CFIDS/ME pedometer does, is stress. It is now the most draining experience you face: recognize it is your nemesis. Try to identify the circumstances and people that stress you, and minimize or avoid all you can.

And maximize the things that reduce stress for you—whether watching comedy films, listening to mu­sic, or engaging in a low-energy avocation or hobby (yoga and meditation help many patients).

If you can, keep a daily record or diary of the way you spend your energy (sitting, walking, talking on the phone, meeting with people, traveling out of the house, etc.). Also keep a record of the medica­tions and dietary supplements you take. Look for patterns in what variables corre­late with "good days" and which with bad.

It will not be easy, but over time you will get a sense of the size of the hidden treasury of energy you have, small though it might be, and what affects it.

To repeat: You have new limits of a kind you never imagined before. Get to know them well and do not exceed them.

Do not challenge your limits by trying to be your "old" self.

This temptation hits every CFS/CFIDS/ME victim, but it can carry you to new depths of illness, crushing you with even more severe limitations and surrealistic symptoms than you ever imagined possible. If you are going to get better—and many people do—it will be through skillful self-management, not through challenging your capabilities.

If you are a take-­charge, formerly high-achieving person, your new goal is an achievement of a dif­ferent kind—to rein yourself in; to gain a gentle self-discipline over your cravings for your former level of activity.

You are still capable of achieving miracles. But you will have to make them happen in new ways.

Finally, if you have insomnia, I highly recommend the following idiosyncratic "treatment": Obtain an auto-reverse cas­sette player, and buy or rent books-on-­tape that interest you. (Those available via rental are far superior to those on sale, since the rental versions are unabridged).

Place the cassette player next to your pil­low so you can operate the controls in the dark. (Use headphones if you live with others so as not to disturb them).

As you lie there sleeplessly, listening to the tape and the narrative will keep you from be­ing driven mad by boredom and frustra­tion. If you're lucky, it will lull you to sleep. At worst, just think how "well-­read" you'll be!

A member of the New York Academy of Sciences and the American Association for the Advancement of Science, CFS/CFIDS/ME veteran Howard Bloom is the author of The Lucifer Principle: A Scientific Expedition into the Forces of History.

The ME/CFS Initiation - A Primer for New Patients

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Last Updated: 30 November 2015 30 November 2015

By Rebecca Bradley

Chronic Fatigue Syndrome (CFS), or Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), sounds like nothing until you get it. Whether you are self-diagnosed and are still looking for medical validation or already have your "official" diagnosis, the initiation rites into the ME/CFS club are pretty much the same.

There is an overwhelming fear of whom to believe and what to do. Questions roll around in your head, such as: What type of doctor do I need to see? Why do the symptoms change? Am I crazy? What do all the medical terms like EBV (Epstein-Barr virus), CFS (Chronic Fatigue Syndrome), FM (Fibromyalgia), NKCs (Natural Killer Cells), mitochondria and cognitive dysfunction mean?

In particular, when you speak with patients who have been around a few years, many of them seem more relaxed or knowledgeable about all the medical lingo and you may feel like a fish out of water. It is very typical for a new ME/CFS patient to feel overwhelmed and frightened, yet be determined to learn all they can to try and beat this illness. Patients tend to jump right into on-the-job training for their personal "medical degree," no college necessary.

As patients, we are educating the medical establishment, one­-on-one from the bottom up. That is why the old ­timers appear to know so much. It isn't that they are smarter than you; they have just been around longer. You'll catch up.

Fear is one of the worst enemies. As the symptoms move around or change, it is not unusual for a patient to question his or her own sanity. How can so many things be wrong? Why does my mind not work when I want it to? Why do I still feel like a Mack truck is parked on top of my body after I've already slept 14 hours? If I rest, will this go away? Will I ever get better? Where did my life as I knew it go? How dare it go on vacation and not take me with it!?!

Connecting

To overcome fear, a good starting place is to join a support group, even if you can't always make the meetings. They may have a telephone buddy for you, or at the least, someone you can talk with occasionally. Connect to other patients and don't let ignorance or isolation keep you down. Isolation is an enemy.

As For Treatments

There is a lot of misinformation out there. Some treatments help, some don't. That is a typical problem for both doctor and patient. Each person may respond differently to drugs and dosages.

Some patients prefer no treatment, while others seek aggressive intervention. Some want allopathic (standard medical treatment) while others turn to natural or homeopathic treatments. Many use a combination.

You have to learn to listen to your body and take your cues from it. Over time, it will tell you what you need; when to rest, what works, what doesn't. Let your intuition be your guide and develop your "ME/CFS radar." After all, no doctor knows your body as well as you do.

Accept that, as a patient—even if you were previously a medical professional—the assumption by many in the medical establishment is that a patient knows nothing. Change that stereotype. Don't blindly accept this type of attitude from a doctor.

Another idea is to get newsletters from several different patient organizations and groups. If you are able, read medical articles, speak with ME/CFS specialists, and if your area puts on a ME/CFS medical conference or has a speaker/lecturer, try to attend. Not only will you feel connected, you might learn something.

There is always plenty of floor space on which to lie down if your body gives out (most patients with ME/CFS seem to carry pillows and drinks at all times). If you can't personally attend a lecture, try to get the information.  Many support groups have information packets about this illness; many libraries lend out books and DVDs.

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Training your doctor

Unfortunately, at this time, it is still rare that a patient can walk into any doctor's office and expect the doctor to know what to do. Treatment is still trial and error; but for those physicians in the know, there are many more tricks in the hat to try than a few years ago. Many inroads have been made in the medical community after years of advocacy and private research funding.

The government is starting to let some money flow into researchers' pockets. It often takes many years for a new disease to get through the pipeline from acknowledgment, research, and a welter of medical publications to the level of clinical acceptance. Look at the time it took before the cause' of most ulcers was pinpointed to be the H. Pylori bacterium. H. Pylori was discovered over 20 years ago, while ulcer patients were told their symptoms were caused by stress!

One big pitfall to look out for is the doctor who doesn't have a clue about ongoing ME/CFS research, and approaches ME/CFS like ulcers, i.e., "This is all in your mind; go see a psychiatrist." Many internists, and even specialists, feel comfortable making a psychiatric diagnosis with which they have little, if any, experience on the subject. How many psychiatrists would presume to diagnose a physical medical condition? (Kind of a one-way street, it seems).

Also, don't buy into the hype that you are just doctor-searching to hear what you want. We all know there are a few—very few—people out there like that.

But, if you are genuinely ill and get nowhere with the doctor you are seeing, go to the next. Whether you pay their bill directly or indirectly, doctors are our employees. Except, perhaps, in the case of HMOs— which may essentially own the doctors. It has now been proven by studies, and interviews with doctors who have left HMOs, that they were not allowed to give all options to their patients, or even worse, not able to order needed tests.

Since ME/CFS diagnosis is still based only on a research definition from the government, with no single sure-fire test, everything related to ME/CFS can be labeled experimental and unnecessary. Hence you may need to fight the system and demand the care you need.

Doctors who are clued in often can show definitive abnormalities on certain tests. There is something wrong in a ME/CFS body. It just doesn't say ME/CFS yet. Science only proves what already exists. It just takes too long sometimes.

At times, it may feel like you are being pulled through a tunnel with the hope of finding the light at the end—only to get there and find another tunnel. You ask yourself, "How many tunnels can I go through and still survive?" Know you are not alone, and eventually a light will glimmer.

The good news is that as you process information and begin to make connections the dots in this puzzle start forming a picture. You won't feel so fragmented. With education and knowledge comes power. You are in a better position to make educated and informed decisions about your own health care, working in a partnership with your doctor.

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Taking charge

Another important point to make, and emphasize, is this: Do not accept emotional abuse or, dismissive behavior from doctors. Doctors have a responsibility to treat us with common decency and not threaten us or patronize us.

They do not have to have all the answers or even understand this illness, but they need to treat us as humans. It is not acceptable for them to stress us out, either, but it happens all the time.

Speak up when appropriate. Not every doctor is a good doctor (but assuming you find one, know when to ask for help).

As a new patient, be patient.  It is always frustrating because we want the answers not today, but yesterday. Slow down a little. If you can't, the illness will make you do it anyway.

Ask to be treated symptomatically to reduce the pain, to help with the sleep disturbance, to handle dizziness and balance problems, to rein in the headaches, to control allergies, etc. Once you get a bit of relief, then you'll be in a better position to start using your energy to read and learn.

Try not to let the initial stage of confusion and fear pull you down. Instead, as you add knowledge and connections with other patients, imagine yourself standing in the center of a circle. All the information you need is on the outside edges. As you pull the pieces from the edge toward you, you are in charge and getting continuously more knowledgeable.

Being forced to adopt major life-altering behavior as a result of a chronic illness creates enough trauma. Recognize this and it will make it easier.

Lying in bed thinking of all the things you could do if you could just get up will only stress you out more. It may take a while to learn new behaviors and attitudes. Many patients come from a background of being independent "over­achievers" used to getting things done.

Adapting is difficult—but necessary.

To better days! 

"Chronic Fatigue Syndrome, Fibromyalgia and Other Illnesses - The Comprehensive Guide"

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Last Updated: 01 December 2015 01 December 2015

Chronic Fatigue Syndrome, Fibromyalgia and Other Illnesses—The Comprehensive Guide, by Katrina Berne, Ph.D., 2001, ISBN: 0897932803

This is one of the best regarded, all-inclusive books which covers diagnosis, theories, research, and overall management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM). Good attention and detail is given to the various detectable abnormalities and diagnostic techniques/ tests used, symptoms and groups of symptoms, things in common but also differences between these illnesses. It also provides a reasonably good overview of treatments (conventional and alternative methods), at least up to those available at the time of publication.

What makes this book unique and particularly helpful is the advice given about practical lifestyle modifications and coping strategies, as the author is a licensed clinical psychologist who treats patients with these illnesses. Furthermore, Dr. Berne also happens to be someone who has ME/CFS and the reader can definitely sense how well she understands and can relate to the effects of these illnesses. This is one of the most frequently recommended books for newly diagnosed patients with ME/CFS or FM and their family members. Due to its popularity, it is likely to be found on the public library system but it is definitely worth purchasing and having on hand.

Detailed Explanation of the 1994 CFS Definition Criteria

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Last Updated: 10 January 2016 10 January 2016

by Ken Casanova

1994 CDC CASE DEFINITION AND DIAGNOSTIC CRITERIA

The Centers for Disease Control and Prevention's (CDC) website presents a summarized version of the 1994 definition of Chronic Fatigue Syndrome (CFS) which was first published (the full version) in the 1994 Annals of Internal Medicine.

The summarized version may be found at:  http://www.cdc.gov/cfs/case-definition/1994.html. As a reference guide, it is useful to print out this summarized version. You may also want to give a copy to your physician.

Many clinicians will rely on the abridged version at the CDC site for making diagnoses, rather than obtaining a copy of the full case definition—which is substantially longer and more detailed. A number of the terms and definitions in the summarized version are not adequately explained. For instance, in the summary, the term "mental status examination" is stated as a part of the evaluation of CFS/ME (myalgic encephalomyelitis) along with a medical history, physical examination, and laboratory tests. Without reference to the full Criteria, the mental status examination, as well as many other important diagnostic requirements, cannot be properly understood or interpreted.

Therefore, in this article, we will explain many of elements of the full,unsummarized 1994 Diagnostic Criteria, so that patients and physicians will be able to understand both the entire Criteria, as well as its limitations and perceived errors. It will be practical in learning about the criteria to print out the summarized version and refer to it when reading an explanation of the full Criteria given below.

SUMMARY OF THE 1994 DIAGNOSTIC CRITERIA

Major steps in applying the Criteria:

1. The major diagnostic focus is prolonged, persistent and unexplained chronic fatigue. The diagnostic process proceeds in a step-by-step fashion:

2. Exclusion from a diagnosis of CFS other illnesses and conditions which explain or may explain the fatigue condition.

3. Recognition of other illnesses or conditions that are current or under successful treatment that do not exclude a diagnosis of CFS.

4. After other illnesses or conditions have been excluded or included, CFS is directly diagnosed through meeting a stipulated number of symptom criteria.

Patients who do not meet the specific diagnostic standards for CFS, are then diagnosed with "idiopathic chronic fatigue", which essentially means that the fatigue remains unexplained.

CDC 1994 Diagnostic Criteria (summarized)

"Definition and Clinical Evaluation...of Chronic Fatigue

Chronic Fatigue is defined as self-reported or relapsing fatigue of 6 or more consecutive months". [Despite this six month formal requirement of the Criteria, a clinician experienced with CFS can make a preliminary diagnosis without having to wait a full six months.]

"The presence of prolonged or chronic fatigue requires clinical evaluation to identify underlying or contributing conditions that require treatment. Further diagnosis or classification of chronic fatigue cases cannot be made without such an evaluation. The following areas should be included in the clinical evaluation.

1. A thorough history that covers medical and psychosocial circumstances at the onset of fatigue; depression or other psychiatric disorders; episodes of medically unexplained symptoms; alcohol or other substance abuse; and current use of prescription and over-the-counter medications and food supplements.

2. A mental status examination to identify abnormalities in mood, intellectual function, memory and personality. Particular attention should be directed toward current symptoms of depression or anxiety, self-destructive thoughts, and observable signs such as psychomotor retardation. Evidence of a psychiatric or neurological disorder requires that an appropriate psychiatric, psychological or neurologic evaluation be done."

Comment: In these two initial steps, emphasis is placed on evaluating possible psychiatric conditions.

Item 1, just quoted, requests an evaluation of any depression, both preceding and following onset of the illness. It is critical that both the patient and the physician distinguish between a primary and secondary depression. A primary depression, either currently or in the past, could exclude or make more difficult a diagnosis of CFS; while a finding of secondary depression can be very consistent with a CFS diagnosis. Secondary depression often occurs as a reaction to a chronic physical illness as an individual's response to a lack of physical improvement and limitations imposed by the illness. Also, any evaluation of a history of depression prior to the illness's onset should distinguish between major severe chronic depression, and infrequent episodes of minor depression.

Item 2, quoted above, requires a "mental status examination" for all patients to be given by the diagnosing physician. The term "mental status examination" does not refer to any standardized or formal test or procedure of evaluation; rather the term refers to a fairly informal and basic assessment of the presence of any disorders or symptoms listed in item 2. Item 2 indicates that if evidence of a psychiatric or neurological disorder is found, then a further examination should be made by a psychiatrist or neurologist.

But caution and common sense should be exercised in this regard. Many CFS patients do not suffer from significant depression or other emotional disorder-however they do suffer the expected emotional trouble and frustrations due to chronic physical illness. Since these individuals do not suffer from a "psychiatric disorder" they should discuss with their physicians whether psychiatric evaluation is necessary. Such evaluations occasionally result in a psychiatric misdiagnosis.

If a referral for depression is made as part of the diagnostic process, the patient should explain to the specialist that the depression is a result of their physical illness (if the patient is reasonably certain this is the case).

Also, during the mental status exam, it is important for the patient and the physician to distinguish cognitive dysfunction (memory and thinking problems) and neurological problems caused by the CFS, from psychologically-caused problems. Referral to specialists who understand CFS for the assessment of cognitive dysfunction and neurological disorder can certainly be helpful in the diagnostic process.]

The next two items in the clinical evaluation list are:

3. A thorough physical examination.

4. A minimum battery of laboratory screening tests, including complete blood count with leukocyte differential; erythrocyte sedimentation rate; serum levels of alanine aminotransferase, total protein, albumin, globulin, alkaline phosphatase, calcium, phosphorus, glucose, blood urea nitrogen, electrolytes and creatinine; determination of thyroid-stimulating hormone; and urinalysis."

"Routinely doing other screening tests for all patients has no known value...However, further tests may be indicated on an individual basis to confirm or exclude another diagnosis, such as multiple sclerosis. In these cases, additional tests or procedures should be done according to accepted clinical standards."

[Comment: See our main article for other laboratory tests for ruling out other illnesses as well as tests that can provide suggestive confirmation of ME/CFS (these are cited by a number of international CFIDS researchers, including Dr. Komaroff.) The next two paragraphs of the CDC definition go on to state that except for cases of specialized research there are no further recommended tests for the diagnosis of chronic fatigue syndrome. A list of unnecessary tests is given. However, given subsequent research and clinical experience, as well as the Social Security Administration Ruling on CFS, 1999, other tests may be indicative of CFS.]

Conditions that Exclude a Diagnosis of CFS

1. Any active medical condition that may explain the presence of chronic fatigue...such as untreated hypothyroidism, sleep apnea, and narcolepsy, and iatrogenic conditions such as side effects of medication.

2. Any previously diagnosed medical condition whose resolution has not been documented beyond reasonable clinical doubt and whose continued activity may explain the chronic fatiguing illness. Such conditions may include previously treated malignancies and unresolved cases of hepatitis B and C infection.

3. Any past or current diagnosis of a major depressive disorder with psychotic or melancholic features; bipolar affective disorders; schizophrenia of any subtype; delusional disorders of any subtype; dementia of any subtype; anorexia nervosa; or bulimia nervosa.

[Comment, item 3:  Here the guidelines state that any current or previous major mental illness or bulimia or anorexia nervosa disqualifies an individual from receiving a diagnosis of CFS. Again, despite the guidelines, an individual with one of these conditions, either in the past or present, could clinically suffer from CFS. For instance, an individual could develop CFS even though he or she had recovered from a major depression ten years previously. Again, individuals who have recovered from anorexia nervosa or bulimia nervosa could develop CFS years later. The guidelines later clearly recognize these possibilities:

"We distinguish between psychiatric conditions for pragmatic reasons. It is difficult to interpret symptoms typical of the Chronic Fatigue Syndrome in the setting of illnesses such as major psychotic depression or schizophrenia." Also, the case definition makes clear that it is a research definition with the goal of separating out possible confounding diagnoses. Individuals who actually have these excluding conditions should seek expert treatment for them - however, it is possible that a person could have one of these conditions and CFS. If this is a possibility, the patient should seek expert diagnosis for each illness."]

4. Alcohol or other substance abuse within 2 years before the onset of the chronic fatigue or any time afterwards.

[Comment: Again it is possible for a person who two years previously suffered from substance abuse to develop CFS and to be diagnosed accordingly.]

5. Severe obesity...as defined by a body mass index [body mass index = weight in kilograms/(height in meters) squared] equal to or greater than 45.

"Any unexplained physical examination finding or laboratory or imaging test abnormality that strongly suggests the presence of an exclusionary condition must be resolved before further classification."

[Comment:: Again despite the guidelines, the possibility exists, as discussed above, that an individual with severe obesity could also suffer from CFS. However, the two conditions would each have to be diagnosed separately.]

Conditions That Do Not Exclude a Diagnosis of CFS

1. Any condition defined primarily by symptoms that cannot be confirmed by diagnostic laboratory tests, including fibromyalgia, anxiety disorders, somatoform disorders, nonpsychotic or nonmelancholic despression, neurasthenia, and multiple chemical sensitivity disorder.

[Comment: This step obviously allows for the multiple diagnoses of fibromyalgia and CFS, and multiple chemical sensitivities and CFS. The step also allows for a CFS diagnosis in the presence of non-psychotic depression and anxiety disorders. However, the item itself along with other language in the definition and statements by its authors, create a serious misunderstanding of CFS by confusing CFS with the psychiatric diagnoses of somatoform disorders and neurasthenia. Throughout the 1990s many presumed "experts" on the illness believed that CFS itself was one or both of these psychiatric illnesses. For more informed information on this issue, please see the section on differential diagnosis of CFS and psychiatric disorders in our Diagnosis documents.]

2. Any condition under specific treatment sufficient to alleviate all symptoms related to that condition and for which the adequacy of treatment has been documented. Such conditions include hypothyroidism for which the adequacy of replacement hormone therapy has been verified by normal thyroid-stimulating hormone levels, or asthma in which the adequacy of treatment has been documented by pulmonary function and other testing.

3. Any condition, such as Lyme Disease or syphilis, that was treated with definitive therapy before the development of chronic symptomatic sequelae.

[Comment: Since the publication of this diagnostic criteria, many experts on Lyme Disease believe that the illness can exist in chronic form, even after short term treatment. Today numbers of patients believed to have had CFS are being diagnosed with Chronic Lyme disease. Some older diagnostic procedures for Lyme are no longer considered reliable by experts. Therefore, if Lyme disease is suspected, a patient should see an expert in current approaches to Lyme disease diagnosis. Please see more in the section on the differential diagnosis of Lyme disease under Diagnosis and also other articles in Resources..]

4. Any isolated and unexplained physical examination finding or laboratory or imaging test abnormality that is insufficient to strongly suggest the existence of an exclusionary condition. Such conditions include an elevated antinuclear antibody titer that is inadequate to strongly support a diagnosis of a discrete connective tissue disorder without other laboratory or clinical evidence.

Final Diagnostic Requirements for CFS

Following these initial steps, an individual will be diagnosed according to the following diagnostic criteria:

"A case of the chronic fatigue syndrome is defined by the presence of the following:

(1) clinically evaluated, unexplained, persistent or relapsing chronic fatigue that is of new or definite onset (has not been lifelong); is not the result of ongoing exertion; is not substantially alleviated by rest; and results in substantial reduction in previous levels of occupational, educational, social, or personal activities;  and

(2) the concurrent occurrence of four or more of the following symptoms, all of which must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue:

1.self-reported impairment in short-term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social or personal activities;

2. sore throat;

3. tender cervical or axillary lymph nodes;

4. muscle pain

5. multi-joint pain without swelling or redness;

6. headaches of a new type, pattern, or severity;

7. unrefreshing sleep; and

8. post-exertional malaise lasting more than 24 hours.

These guidelines complete the diagnosis of Chronic Fatigue Syndrome.

Idiopathic chronic fatigue: If an individual fails to meet all the criteria, above, for Chronic Fatigue Syndrome diagnosis, s/he will be classified as having idiopathic chronic fatigue.

A final note on diagnosis under the 1994 CDC definition:

A person who actually has CFS may be excluded by the formal definition. For example, a person who had primary depression in the past would be excluded. However, this person may have CFS. Once all the other diagnostic steps had been taken, the individual could be diagnosed on the basis of the symptom profile by a doctor experienced in the diagnosis of CFS. Especially important in this type of diagnosis would be the documentation of history, treatments, and the extent of resolution of any previous or current illness or condition that qualifies as exclusionary. Documentation of lab and other testing showing consistency with CFS and inconsistency with the exclusionary illness would be especially important.  Please see "Some Tests to be conducted to help patients determine objectivity of CFS/CFIDS and/or other disabling symptoms", from Dr. Charles Lapp [pg. 62, Disability booklet] and the list of CFIDS symptoms in the Diagnosis article on this website .

Surgery and Anesthesia

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Last Updated: 20 November 2015 20 November 2015

Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) need to take extra precautions when preparing for surgery. It is important to tell the surgeon, anesthesiologist and any other healthcare provider who will be involved with surgery and post-surgical care about having these illnesses and the specific problems being experienced with them, especially hypersensitivity to medications and other substances.

Prepare a written summary of medications, side effects, specific problems, and anything else that will be important for the doctors and hospital staff to know. Make copies of this summary and ask these be placed in your medical chart.

Dr. Charles Lapp, a longstanding ME/CFS and FM clinician, has recently revised a list of recommendations for surgeons and anesthesiologists. Be sure to review this information with the doctors who will be doing your surgery and providing anesthesia—this material should also go in your medical chart.

More resources

Recommended for persons with CFS or FM who are anticipating surgery by Charles W. Lapp, M.D.

"Recommendations prior to surgery" on p.30 and p. 41 of ME/CFS: A Primer for Practicing Clinicians