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Differential Diagnoses
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- Last Updated: 30 August 2017 30 August 2017
This article discusses making differential diagnoses between ME/CFS and fibromyalgia, Multiple Sclerosis, Chronic Lyme disease, Chiari malformation, psychiatric disorders, and multiple chemical sensitivities.
Differential diagnosis between ME/CFS and fibromyalgia
Fibromyalgia (FM) is a common and chronic disorder characterized by widespread pain, diffuse tenderness, and a number of other symptoms. The pain is widespread, affecting all four quadrants of the body, and can be severe enough to interfere with routine daily activities. It migrates, can be achy, throbbing, shooting, or stabbing, and is worse in areas used most, like the neck or back.
Individuals often say they awaken feeling as if they hadn't slept. A sudden onset of profound fatigue can occur during or following exertion. Many other symptoms are common to fibromyalgia, including stiffness on waking, memory and concentration problems, excessive sensitivity of the senses, headaches, Temporomandibular Joint Syndrome (TMJ), irritable bowel, and bladder and muscle spasm.
Fibrositis, an older name, is still used interchangeably with fibromyalgia.
Although fibromyalgia is often considered an arthritis-related condition and is usually diagnosed and treated by rheumatologists, it is not truly a form of arthritis (a disease of the joints) because it does not cause inflammation or damage to the joints, muscles, or other tissues. It is often associated with the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and sometimes confused with it.
Research authorities vary in viewpoint as to the relation of FM and ME/CFS, but the best research to date indicates that the two illnesses, while often associated, are different and separable—both in nature of causation and in their pathophysiologies (effects on processes in the body.)
The fact that the two illnesses are the province of separate specialties can also lead to diagnostic problems. As a rheumatologist is trained in rheumatological illnesses, there are occurrences of ME/CFS being diagnosed as FM when the physician is not well versed in the diagnosis of ME/CFS. And an infectious disease specialist may be prone to misdiagnosing FM as ME/CFS.
Therefore, when there is doubt about which illness a patient has, s/he should become familiar with the differences between the two illnesses and seek a physician who knows how to diagnose both illnesses.
Note that it is very common for a patient to be diagnosed with both FM and ME/CFS.
Diagnosis of Fibromyalgia (FM)
In May 2010, the American College of Rheumatology (ACR) released new criteria for the clinical diagnosis of Fibromyalgia (FM). These replace older criteria published in 1990. Using the older criteria, besides having widespread pain on both sides of the body for at least 3 months, a patient needed to have pain (not just ‘tenderness’) present in 11 out of 18 specific tender point sites in order to be diagnosed with FM.
Computing the Widespread Pain Index and Severity Scale Symptoms Scores
The new criteria recommend that the tender point examination be replaced with a combination of a widespread pain index (WPI) and severity scale of symptoms (SS) as the revised standards for the diagnosis of FM.
The Widespread Pain Index is scored by asking the patient about whether pain was experienced in the last week in 19 different areas of the body. Score one point for each area (total WPI score is from 0 – 19).
The Symptom Severity Scale rates the severity in the last week of the following symptoms from 0 (no problems) to 3 (severe, life-disturbing):
- fatigue
- waking unrefreshed
- cognitive symptoms.
In addition to these three, the severity of any/all other symptoms is rated from 0 to 3. This results in a total SS score of from 0 – 12.
For more detail, see this chart [2010_diagnostic_criteria_graphic.pdf]
Making the diagnosis based on the scores
Using these new criteria, a diagnosis of Fibromyalgia will be made on the following basis:
- The values and ranges allowed for the WPI and the SS scales should meet one of the combinations: WPI >7 AND SS >5 or WPI 3–6 AND SS >9.
- Symptoms have persisted at this level for the past 3 months.
- The patient does not have any other disorder or cause to explain the pain.
Note: There is a new blood test for Fibromyalgia that is being developed by a private clinic. Independent validation of this test has shown mixed results so far.
Differential diagnosis between ME/CFS and Multiple Sclerosis (MS)
A percentage of ME/CFS patients, either recently diagnosed or who have been ill for a substantially longer period, have neurological signs and symptoms. Drs. Anthony Komaroff and Dedra Buchwald reported seeing ataxia (difficulty with muscle coordination), focal weakness, and transient blindness in ME/CFS patients.
Drs. Henderson and Shelokov, in their study of CFS-like outbreaks in the U.S., found signs of paresis (partial paralysis), facial paresis, urinary retention, diplopia (double vision) and Babinski's sign (improper nerve conduction in the toes.)
Multiple Sclerosis (MS) is a neurological illness in which the myelin sheath covering of nerves is progressively destroyed. According to the National Multiple Sclerosis Society this degenerative process "impairs the transmission of nerve impulses to muscles and other organs of the body. The symptoms of MS include weakness numbness, tremor, loss of vision, pain, paralysis, loss of balance and bowel dysfunction."
There is at least the distinct appearance of overlap in some of the neurological signs and symptoms between ME/CFS and MS. A leading international expert in MS, Dr. Charles Poser, has also studied ME/CFS. In an article entitled "The Differential Diagnosis of CFS and MS" published in the CFIDS Research Review (CFIDS Association of America), Dr. Poser writes: "An alarming number of CFS patients are misdiagnosed with multiple sclerosis (MS). The severity and symptoms of CFS fluctuate and sometimes mimic the relapses and remission of MS...In a review of 366 patients referred to me who had been diagnosed with MS by a board-certified neurologist, only 236 patients (65%) had been correctly diagnosed. An astounding 28 (22%) actually had CFS."
The differential diagnosis between the two illnesses can be complicated, even to a neurologist.
In summary, his basic points are as follows: most patients who have definite neurological symptoms that suggest MS are referred to a neurologist who will routinely order an MRI. Many patients with ME/CFS will show punctate white spots in the white matter—as will MS patients. However the definition and areas of the spots are somewhat different in the two illnesses, and some radiologists may miss these distinctions. Dr. Poser is firm that MS must not be diagnosed on the basis of MRIs alone. He states that while many ME/CFS signs and symptoms mimic those of MS, there are significant differences, which thereby demand a full and careful evaluation and history. MS rarely shows the infectious-like symptoms of ME/CFS, nor the broader multiplicity of symptoms across physiological systems of ME/CFS.
To further complicate matters, MS especially in its initial stages, can more closely mimic ME/CFS symptoms. Numbers of patients have, as time progressed, been diagnosed as having one illness and then the other. It is absolutely important that a patient suspected of having ME/CFS, but having clear neurological symptoms, be referred to a neurologist qualified to make the differential diagnosis.
Differential diagnosis between ME/CFS and Chronic Lyme Disease
Currently the differential diagnosis between ME/CFS and Chronic Lyme disease is both difficult and under dispute. One reason is because of conflicting opinions among Lyme Disease specialists as to the actual case definition of Lyme disease and its proper and accurate diagnosis. Some Lyme disease specialists deny that chronic Lyme Disease exists at all. So they claim that Lyme Disease, properly treated, does not have a chronic form (more than a few months duration.). In fact, there is no doubt that chronic Lyme disease is a very real illness. Some physicians who acknowledge this also often theorize that any possible chronic Lyme is really ME/CFS.
The major symptoms of chronic Lyme disease that overlap with ME/CFS are:
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cognitive dysfunction and mood changes
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central nervous system irritability, including parathesias (numbness, tingling crawling and itching sensations)
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fatigue
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flu-like illness: fevers, malaise, headache, muscle aches
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joint aches (arthralgia) and intermittent swelling and pain of one or a few joints.
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sleep disturbance
Differential diagnosis between ME/CFS and chronic Lyme is of critical importance. Chronic Lyme disease left untreated can become extremely serious, even life-threatening. The longer it is left untreated, the longer antibiotic treatment may take to work effectively. Therefore, misdiagnosis of chronic Lyme disease as ME/CFS can have severe consequences for patients.
What are some of the issues of differential diagnosis? First, Lyme disease must be diagnosed properly—and there is much dispute as to how such diagnosis is properly done. The Centers for Disease Control Testing Protocol, which most doctors will follow, is seriously deficient. The protocol first calls for an Elisa test, which if positive, is followed by the more accurate Western Blot test. However, the Elisa test may show up to 80% false negatives—meaning the person is actually positive for Lyme, but the test comes up negative. Therefore, anyone with chronic Lyme symptoms should have the Western Blot immediately. However there is much dispute and confusion among specialists about the proper interpretation of the Western Blot. The Western Blot is not an "all or nothing" test. There are numerous bands which must be looked at and interpreted. A non-specialist may read a Western blot as negative, when a knowledgeable specialist may see a likelihood of Lyme in the same test.
Other specialized laboratory tests, which may provide greater diagnostic information, can also be run by specialists. Further accurate diagnosis involves careful clinical evaluation and detailed history.
A patient suspected of having chronic Lyme disease and his/her family must educate themselves about how chronic Lyme is diagnosed and where to find a doctor who has the knowledge and motivation to make the most accurate diagnosis possible.
Complicating the matter is that some Lyme specialists will over diagnose chronic Lyme and will make a tentative diagnosis, after testing, primarily on symptoms and history. Some physicians will begin treatment as an adjunct to diagnosis, the notion being that if the treatment begins to work, then the Chronic Lyme is identified.
The serious issue here is that ME/CFS and Chronic Lyme may clinically appear almost identical. If an ME/CFS patient is misdiagnosed with Chronic Lyme and started on treatment, there can be severe consequences, both from the effects of treatment and the time and costs involved.
Differential diagnosis between ME/CFS and Chiari Malformation
Around the year 2000, there was significant interest in whether some cases of ME/CFS were in caused by Chiari Malformation—an anatomical condition in which a portion of the brain is squeezed too tightly into the top of the spinal canal; or alternatively the upper portion of the spinal cord is squeezed into a spinal canal that is too narrow.
Some specialists diagnosed this condition in persons exhibiting ME/CFS symptoms. These physicians carried out surgeries to correct the Chiari malformation. Some patients improved, others did not.
A number of ME/CFS specialists were greatly concerned about the Chiari malformation diagnosis and subsequent surgery. For more information on this differential diagnosis, please see Voelker, "Chiari Conundrum: Researchers Tackle a Brain Puzzle for the 21st Century," JAMA 301, No. 2 (2009): 147-149.
Differential diagnosis between ME/CFS and Psychiatric Disorders
Unfortunately, the issue of differential diagnosis between ME/CFS and psychiatric illnesses is not simply a straightforward one based on clinical history and medical evaluation. Since the illness first became publicly known in the late 1980s, there has been a wide gap in the developing understanding of ME/CFS between the many independent clinicians and researchers directly involved with treating patients and conducting careful and rigorous research, and the U.S. government public health and research agencies and a minority of physicians and researchers.
Beginning in the late 1980s, primary care physicians and specialists began to encounter patients with a severe flu-like illness, often with neurological and other symptoms, that was not resolving in a few weeks or months. In many patients this illness became chronic over a period of years. Although researchers were able to find abnormalities in the immune systems of patients and punctuate lesions on MRI, routine laboratory tests often showed few abnormalities. Despite multiple research efforts, no clear cause could be found, although many of the more serious researchers suspected a viral link, since antibodies to a number of viruses were found to be elevated.
The Centers for Disease Control & Prevention (CDC) almost immediately told physicians, patients and the public that the illness was substantially psychiatric in nature—"atypical depression", neurasthenia, somatization disorder, a pathological response to stress, or poor coping behavior. It came to be called "yuppie flu"—referring to young well-educated people who supposedly had nothing serious with which to occupy themselves. Articles by government and other scientists discussed the sickness of the "overachiever."
Hence the question was not one of scientific differential diagnosis, but became instead a medical and political debate as to whether ME/CFS was psychiatric or a physical illness (such as mononucleosis or multiple sclerosis).
Government and other scientists, on the basis of poorly designed research were portraying the illness in the press and medical circles as psychiatric and not a real physical illness. Treatment would consist of psychiatric medication and learning to more effectively solve problems. The press and media generally communicated this point of view to the public. Patients who were demonstrably and seriously ill were facing doubt and questions about whether their illness was "real". Some physicians were telling patients "there is nothing wrong with you", "it's all in your head", "just get some rest and you'll be fine". It's an unfortunate fact of medicine that when some physicians cannot find clear abnormalities on laboratory and other medical tests, their conclusion will be that "nothing is wrong"—even when the conclusion is at variance with the patient's obvious condition. Some physicians may not admit that they can't understand what's wrong and simply say: "You are clearly ill, but I can't figure out what you have." For some it's easier to be able to say something certain like "there's nothing wrong", rather to admit to a more evidence-based uncertainty.
For most of the 1990s, public health and research agencies, despite developing research findings to the contrary, portrayed and labeled the illness as substantially psychiatric. This viewpoint filtered down to physicians. However, as research progressed throughout the 1990s and into the present century, more and more evidence mounted that the illness was physiological and multi-systemic in nature. Therefore, it is now possible, using proper and careful diagnostic techniques, to make an accurate differential diagnosis between ME/CFS and psychiatric illnesses. This is not to say that ME/CFS can't co-exist with anxiety or depression—more often of secondary nature.
Summary of some research separating psychiatric illness from ME/CFS
Excerpt from: Anthony Komaroff, M.D., "A 56-Year Old Woman with Chronic Fatigue Syndrome", The American Journal of Medicine (1997) October 8.
Differences between CFS and Major Depression: "Although fatigue and some of the other symptoms of CFS could reflect a primary psychiatric disorder, several other symptoms of CFS are not characteristic of psychiatric illnesses: for example, sore throat, adenopathy, and post-exertion malaise...
" ...a careful controlled trial failed to demonstrate an improvement in fatigue from treatment with fluoxetine in patients with CFS, even in those with a concomitant major depression. Indeed, even the concomitant depression did not improve, indicating that the phenotype called ‘depression' in CFS patients may stem from an unusual underlying pathology.
"...studies using structured psychiatric interviews find no evidence of major depression in many (25-60%) of patients with CFS, either before or after the onset of CFS. In our studies, the majority of patients also have no evidence of anxiety disorders at any time in their lives, including after the onset of CFS."
A study by MacDonald et al. in the American Journal of Medicine, May 1996, found that CFS patients were not more depressed than controls prior to illness onset.
In the Summer/Fall 1988 CFIDS Chronicle, Dr. Komaroff responded to Dr. Strauss' paper, "Lifetime of Mental Illness in People with CFS." Strauss's paper indicated 7.1% of CFS patients had histories of major depression. Dr. Komaroff pointed out that in the population-at-large, a history of major depression is present at a rate of 6.9%.
In Osler's Web, Hillary Johnson reports a study done by Dr. Komaroff in Boston of patients suffering from CFS-like symptoms, including recurrent swollen lymph nodes, joint pain, parathesias, difficulty sleeping, severe myalgias, headaches and severe fatigue for at least six months. "Komaroff's team found no incidence of psychiatric or other chronic diagnoses in the history of the patients."
The CFIDS Chronicle in September 1997 reported on a study done by Jorge and Goodnick, "Chronic Fatigue Syndrome and Depression; Biological Differentiation and Treatment," in Psychiatric Annals, May 1997: "...[They] distinguish CFIDS from depression in terms of physical signs and symptoms, sleep, fatigue, memory, biological parameters, brain imaging, immunology and treatment. They identify differences between the two conditions based on an extensive review of the literature."
Hilary Johnson, in Osler's Web also recounts that the CDC itself found, in 1990, that 2/3 of patients being referred to the Agency's surveillance project "...were free of psychological problems when their disease began." She quotes Walter Gunn,M.D. at the CDC (1990): "The majority (who meet the case definition of CFS) did not have a psychological problem concurrent with the onset of fatigue. So for anyone who says that this is depression in disguise, we can say, ‘That is not what the data says.' We're not seeing any rate of depression higher than the normal population." Gunn further explained, "...the psychological profiles of CFS patients resembled those of people suffering from multiple sclerosis and other chronic illnesses."
Differential Diagnosis Between ME/CFS and Major Depression
Under the DSM-IV a person must have 5 or more of the qualifying symptoms to be diagnosed with major depression. Of these symptoms, only 3: fatigue or loss of energy every day, diminished ability to think or concentrate, and insomnia or hypersomnia nearly everyday, directly overlap with the 7 CFS diagnostic symptoms of the 1994 CDC Definition of CFS. Since to obtain a CFS diagnosis a patient must have at least 4 of 7 qualifying symptoms, a CFS patient would not normally also be diagnosed as having major depression. Clearly at variance with the 9 diagnostic symptoms of depression are the following CFS diagnostic symptoms: post-exertional malaise (worsening of symptoms after exertion, even up to a day or two later); headaches of a new type or severity; muscle pain; and the infectious-type symptoms very uncharacteristic of depression such as sore throat; and tender lymph nodes in the neck or underarm area. If mild fever or chills and non-exudative pharyngitis from the 1988 definition are added, the gap between the two illnesses is widened.
From the Massachusetts CFIDS/ME & FM Association Physicians Primer which was written by medical professionals: "The depression commonly seen with CFIDS may resemble a major depression with atypical features. [Secondary depression in CFIDS is similar to secondary depression in other patients with chronic physical illnesses.] Both may include sleep disorder but in CFIDS, the sleep disorder involves non-REM sleep disturbances instead of the REM sleep disturbances seen in major depression. Although fatigue is present in both conditions, the fatigue in CFIDS is profound and accompanied by intense frustration from not being able to do what one still wants to do; i.e., patients do not usually lose motivation and interest. In contrast, apathy and anhedonia generally accompany the fatigue in primary depression. Furthermore, persons suffering from a severe primary depression may ‘forget' that they have ever felt any other way and may have given up hope that their bleak state can improve. Patients with CFIDS, on the other hand, are exquisitely aware of not feeling as well as they used to or as well as they hope to.
"Patients with depression and anxiety often complain of difficulty with thinking and concentration, as do patients with CFIDS; however, the manifestations of cognitive abnormalities on neuropsychological testing typically reveal different patterns. CFIDS patients tend to present a characteristic profile of apparently multi-focal deficits including short-term memory, figure-ground, and aphasic difficulties. Furthermore, CFIDS sufferers may benefit from very low doses of antidepressant medication and may be unable to tolerate the usual therapeutic dose. And finally, a concurrent major depression in CFIDS may respond to antidepressant medication, but the systemic complaints and cognitive impairments persist even when mood improves, thus differentiating CFIDS from an atypical depression or ‘depressive equivalent'."
A major study by Strauss and Demitrack found that patients with major depression have an excess of cortisol. Also according to the study, patients with ME/CFS were found to have low cortisol levels.
Finally, a major distinction is that when patients with depression actually get up and exert themselves, they often feel better and do not suffer major post-exertional illness. This is untrue with ME/CFS patients.
Differential diagnosis between ME/CFS and Generalized Anxiety Disorder (DSM-IV 300.02)
Both the 1994 CFS criteria and the DSM-IV criteria for Generalized Anxiety Disorder have in common a requirement of fatigue of at least 6 months duration. Each criteria also have in common certain neuropsychological symptoms—however with important distinctions. Sleep disturbance occurs in both illnesses, with specific differential characteristics.
However, the 1994 CFS definition requires at least one more symptom for diagnosis, none of which match further symptoms diagnostic of Anxiety disorder. Further symptoms for CFS include post-exertional malaise, muscle pain, and the infectious-like symptoms—all of which are not diagnostic of anxiety. Of course, ME/CFS patients may have secondary anxiety and worry because they are chronically physically ill.
From the Massachusetts CFIDS/ME & FM Association Physician's Primer by medical professionals: "As in anxiety disorder, CFIDS patients may report symptoms of autonomic hyperactivity, motor tension, worry and/or dread, dizziness, loss of balance, lightheadedness, or hypersensitivity. Panic attacks or feeling overwhelmed may even be a patient's presenting complaint, but a careful history will reveal other characteristic multi-systemic symptoms of the illness."
Differential diagnosis between ME/CFS and Somatoform Disorders
There are a number of somatoform disorders. The most relevant, in terms of differential diagnosis with ME/CFS, are somatization disorder and "neurasthenia".
The DSM-IV criteria for somatization disorder require a history of many physical complaints beginning before the age of 30. Epidemiological research on ME/CFS demonstrates that the majority of ME/CFS patients have an onset at an age above 30. "The onset of multiple physical symptoms later in life is almost always due to physical disease." (Massachusetts CFIDS/ME & FM Association Physician's Primer). Fatigue, which is a major ME/CFS symptom is not a symptom of somatization disorder; nor is disordered sleep or decreased concentration. The only symptoms in common are head, joint, and possible muscle pain.
Neurasthenia, characterized by fatigue and weakness, is listed in DSM-IV as Undifferentiated Somatoform Disorder. Neurasthenia, a common diagnosis at the end of the 19th century has generally fallen into disfavor. The DSM-IV definition is: "one or more physical complaints (e.g., fatigue, loss of appetite, gastrointestinal, or urinary complaints) for which either 1) the symptoms cannot be fully explained by a known general medical condition, or 2) when there is a medical condition, the physical complaints are excessive in relation to the condition."
The definition of "neurasthenia" is obviously vague—it requires an interpretation that physical symptoms are either "excessive" or "unexplained". Specialists familiar with the symptomatology, pathophysiology, epidemiology, and the extensive research into metabolic dysregulation in ME/CFS would not be prone to making the psychiatric diagnosis.
Differential diagnosis between ME/CFS and Phobic Avoidance Disorders
(From the Massachusetts CFIDS/ME & FM Association Physician's Primer by medical professionals): "It is important to differentiate CFIDS from phobic avoidance disorders. Unlike agoraphobia, staying home does not significantly alleviate the patient's symptoms. In children, school phobia must also be considered but can usually be ruled out by the persistence of the symptoms on weekends and holidays and by a lack of premorbid history suggestive of the common patterns for school avoidance."
Differential diagnosis between ME/CFS and Multiple Chemical Sensitivities (MCS)
Please see the article "CFIDS and Multiple Chemical Sensitivity (MCS ): What's The Connection?"
More resources
A Personal Journey Into Lyme Disease
CFIDS and Multiple Chemical Sensitivity (MCS ): What's The Connection?
CFIDS/FM and Chiari Malformation Surgery
Dr. Sam Donta: The Interface of Chronic Lyme Disease, CFS and FM
National Multiple Sclerosis Society
Oral Complications in Sjogren's Syndrome and Chronic Dry Mouth
Symptoms Common to Lyme Disease and ME/CFS
Coping And Hoping: Patients Speak Up
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- Last Updated: 06 December 2015 06 December 2015
by Priscilla Larson
In response to a questionaire, 30 persons with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or Fibromyalgia (FM) or both, shared their pain and passion, their coping skills and their hope for the future as they wait for a cure.
PWCs (Persons with Chronic Fatigue Syndrome) suffer with an extremely long list of potential symptoms, overwhelming fatigue being the bottom line. Because the symptoms vary hour to hour, patients are often misunderstood, thought to be hypochondriacs. Doctors don't like to take on patients who never get well; friends tire of someone who is always sick. Because PWCs usually look well, people frequently comment on that, giving the patient the feeling that, as several participants reported, "I feel invalidated."
When asked "What they would like well people to know", the participants in the survey expressed their need to be believed, understood, loved, and assisted in the following ways:
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"The thought of being forgotten is almost more painful than the illness itself."
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"It means a lot when you include us in your social events. Even when we can't come, it takes the sting out of being home alone because we were included."
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Some pleaded for patience. "Please be patient with us—there's bound to be emotional upheavals."
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Regarding assistance, the general tone was "Treat us like you would anyone with cancer or lupus or any other long term illness."
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"Just ask me if I need help and how much. I hate to ask for fear of rejection."
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The longing to be understood came out in answers like, "Sometimes I need the freedom to express honestly what I'm struggling with, without judgment and pat answers." And, "I wish well people understood the difference between CFIDS and temporary fatigue due to over work. So many compare their tiredness to our fatigue and think it is the same."
In responding to the following questions, the participants have shared their creative coping skills, their heartfelt longings, and insights and suggestions on how best caring friends and family can help.
List the most helpful ways that well persons have related to you by what they said or did
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"A willingness to listen."
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"Showing interest in learning about my illness."
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"By becoming involved in the cause."
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"Friends who can accept ‘maybe' commitments."
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"When friends adjust their plans so I can participate."
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"People who observe, ‘I can see that this isn't one of your better days. Let's do something together on a good day for you.'"
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"Brought in a mea1."
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"Telephone call that sometimes includes a prayer."
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"Believing me unconditionally."
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Regarding "maybe" commitments: A positive example is in the way a hostess graciously extended a New Year's Eve party invitation. She said, "Come when you can, leave when you must, and know that if you can't come at all we'll miss you but we'll understand and we'll try another time."
What are the most hurtful ways persons have related to you?
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"Comparing their tiredness to CFIDS showing that they really don't get it."
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"Ignoring what I said about hurting and then going right into long descriptions of their temporary pain."
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"Saying, 'You're not sick, you're lazy. Snap out of it!' "
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"Are you sick again?"
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"The attitude that since I'm disabled I'm worthless. My accrued knowledge doesn't count."
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"Come on! You can go! Think positively!"
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"I wish I could lie around all day like you and watch TV."
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"We need an able-bodied person here."
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"You can't do anything!"
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"You should be ashamed of yourself parking in that handicap space. You don't look handicapped to me."
Regarding hurtful comments: Belittling the illness by the uninformed is hard on patients. Not being taken seriously can lead to several reactive attitudes that hurt. "We need compassion, not condemnation," one PWC wrote.
Also, regarding the abuse some take when parking in the handicap spaces even when they have a registration to do so, the public needs to realize that all handicaps don't show. Think of persons who have heart ailments and breathing difficulties when walking. A PWC may be spending her entire energy quotient for the day to go into one store to do an errand.
What is the most difficult aspect of being chronically ill?
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"Not knowing if I'll be able to participate in an upcoming activity."
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"Never ending pain."
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"Unpredictability of a good day."
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"Being misunderstood."
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"Not having the physical capacity to follow through on my ideas."
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"Not having a romantic relationship."
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"Friends who never ask if I need help."
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"The financial ruin. Working brings on severe fatigue."
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"Not being able to work or to do something useful."
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"So many losses: relationships, social life, meaningful employment, my home, income."
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"Wondering if I'll ever find a partner who will understand and support me."
In these responses we see the pangs of loneliness and the fear of further losses in relationships and property.
What would you like well persons to know?
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"Realize that we have feelings!"
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"We want well people to know that we want to socialize but sometimes we can't even handle a phone call. Please don't take it personally but call again. If we don't return your call right away it's not because we don't want to but because we can't think clearly right then."
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"Give us credit for what we do."
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"Understand that our symptoms vary from hour to hour as different systems in our bodies become affected. What is happening today might he superceded by other symptoms tomorrow"
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"When our memory shuts down it doesn't mean that what you said isn't important to us, our brains just didn't register at that moment."
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"I'm still the same person—I just don't have the abilities I used to have."
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"I wish that well persons understood the difference between CFIDS and temporary fatigue due to overwork. So many compare their tiredness to our fatigue and think it is the same."
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"When you see us out on an errand and say, 'You look wonderful, you must be all better now,' we feel like you don't realize that we may have just used up our entire energy quotient for the day and will probably drop into bed when we get home."
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"I'm able to do a lot if I can do it at my own pace. Others can't do that, so just ask."
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"It means a lot when you include us in your social events and you don't get offended if we can't do it all."
Because PWCs usually look so well, people often comment on that as if to reassure the patient. Patients sometimes take it to mean that you don't believe that they are sick. Better to say something like, 'It must be hard for you to feel so lousy when you look so well." That shows real sensitivity.
While a few participants in the survey have become comfortable asking for help, most find it difficult and appreciate specific offers.
Like most people, chronically ill persons would rather be the server than the servee. They would rather be involved in meaningful work than lying at home alone.
What is your best coping tip to pass on to others?
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"Respect yourself enough to explore what affects you beneficially as well as adversely. Watch yourself. Analyze your needs."
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"Don't stop doing the things you love but do them on a different level. Have a windowsill garden instead of a yard one, listen to music instead of performing."
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"Read stories about overcomers and be inspired."
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"Develop your faith and put it to work."
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"Keep a list of things you like to do and do them according to your energy level."
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"Do what gives you satisfaction and pleasure."
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"Phone someone who is also suffering and offer consolation and a listening ear."
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"Never feel guilty about your ability level at any time."
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"Find something to laugh about."
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"Stay in touch with a support group."
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"Learn all you can about your illness; experiment with what you learn."
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"Look for alternative treatments."
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"Understand that you have a limited amount of energy; use it well.
PWCs who cope best seem to be those who take control over their decisions and circumstances, stay in touch with a support system, forgive those who don't understand, learn to ask for help and give it to someone else in any way they can, build up their faith and practice it while accepting their limitations and live creatively within their imposed boundaries.
Dr. Charles Lapp of Charlotte, North Carolina cautions patients to truly grasp the concept of limited energy. "It's like money in the bank," he told the audience when speaking at Newton Wellesley Hospital. "You can take it out and use it as you wish, but when it's gone, it's gone! It takes a long time for PWCs to replenish the chemicals in their cells that make energy."
Sometimes, for a special occasion that we just have to attend, we will extend ourselves willingly and pay the price of days in bed for having gone but it was a conscious choice.
In what ways do you help yourself?
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"I listen to my body when it calls out with a need."
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"I've learned to rest before I'm totally drained. "
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"I give myself plenty of time to prepare for anything, rest time."
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"I gave up on trying to be perfect."
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"I try to learn or enjoy every moment that I can."
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"I don't waste energy on negative thoughts.
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"I've learned to let people help me."
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"I plan an enjoyable activity every day."
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"I keep a journal."
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"I bought an answering machine."
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"I stay involved in my health care seeing a doctor regularly."
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"I disconnect the phone whenever I need an uninterrupted nap."
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"I relieve my emotions by taking a walk when I can, punching a pillow to release my anger and by crying in private about my loneliness and losses."
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"I have simplified my life by learning to say 'No.' "
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"I accept myself as I am now, not as I was before."
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"I keep faith in a cure someday."
There is a ceiling on what ill persons can do for themselves. They desperately need the involvement of others in their lives.
Joni Eareckson Tada, author, artist, and musician who is a quadriplegic and is the president of JONI AND FRIENDS, a ministry to disabled persons, says "No one should have to suffer alone."
Is there anything else you'd like to bring up?
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"I wish we had a meeting place where we could go for companionship—on our bad days for comfort, on our good days to give it. We could do things together, talk, sing, do crafts, watch movies, do jobs for the organization when we could."
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"Public education is very important. We need well persons to write articles about our illness and get them in the papers."
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"Funds for research are desperately needed to find the cause and cure."
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"Most people have no idea what life with CFIDS is like. It's like a never-ending death process. I'm waiting to live!"
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"There's a great need for compassion. It's so important, especially when we are ill."
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"There is a great need for well volunteers in our organization. PWC's do what they can but it isn't enough with our limited stamina. We need willing hands and compassionate hearts to do office work, publicity, advocacy, telephone hot line volunteering, fund raising—anything that a campaign or business needs to accomplish their goals."
To make a donation or offer your services contact the Massachusetts CFIDS/ME & FM Association.
Self-care Strategies
- Details
- Last Updated: 06 December 2015 06 December 2015
by Rita Sanderson
Learn all you can about your illness
Read at least one good, thorough book about your illness (be sure to check out the book reviews on this website), look for medical articles published by physicians who have specialized in the treatment of the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or Fibromyalgia (FM), do Internet searches. A place to start is to thoroughly use this website, which contains significant much information as well as helpful links to other sources of information, subscribe to newsletters published by major ME/CFS and/or FM organizations, and subscribe to Internet sources that will automatically deliver information to you. Try going to a couple of support group meetings or using one of the many illness-specific Internet discussion forums. Education is one of the most important components in the treatment of ME/CFS and FM and knowledge will empower you.
Interview a physician as if you were hiring a consultant (for your healthcare)
When you first visit a physician, determine if the physician listened, was interested, and demonstrated enough knowledge about the illness. Trust your instincts. The initial visit is a data-gathering session and future appointments are to discuss issues in greater detail. Obtain and take medical records with you on new visits.
Clear and concise presentation of medical history and symptoms is essential
The goal is to make the most of your doctors' visits by having questions written down, not leaving things to memory and trying to schedule an appointment when you will be able to function at your best. As unfair as it may sound, patients are judged on their ability to communicate and on their behavior and appearance, especially during consultations with specialists.
Always question new symptoms and don't attribute everything to ME/CFS or FM. It is possible to have several other co-existing conditions, and tests may need to be periodically ordered to rule out other problems.
In order to maintain a good medical history, consider using a journal, notebook or a large calendar to record the status and changes of symptoms; what medications have been prescribed; dosages and if /when dosages were changed; effects of these medications; and record anything else that may have had an effect on your health-supplements, foods, exposures, and/or activities.
Also, remember to explain your inability to, or difficulty in performing certain activities and functions so that these are documented in your medical records.
Patient Rights
As a patient, you have a right to be respected, trusted, and be taken seriously by a physician. You have a right to timely feedback on test results and a clear explanation (in terms you can understand) of the diagnosis, treatment and prognosis.
You also have a right to an exact copy of your medical records. (Guidelines for securing your records vary from state to state.)
A patient should not be made to feel somehow guilty or responsible for having a complicated, recurring illness that his/her doctor doesn't know how to treat and manage.
A patient needs to speak up when appropriate and if you have a difficult situation to discuss or resolve, consider bringing someone with you. There may be times you may have to go outside your HMO to get what you need.
Doctor-Patient relationships
On the other hand, patients must be reasonable in their expectations and take responsibility for their care. If you have a doctor who is willing to work with you through the sometimes lengthy process of finding out which medications and therapies work best for you, then this could be considered a feasible arrangement.
The goal is to develop a rapport with the doctor so that you can comfortably provide feedback about problems/treatments and have him/her respond in a respectful manner. Sometimes patients may not give a certain treatment enough time to work or to have it be adjusted to the right dosage, decide to make changes in the treatment on their own, and may not even report the results to the doctor.
As you continue to see a particular doctor, you are creating your medical history and if you depart from that individual, you can lose a lot of what has been shared or discovered and end up starting all over again. Of course, there are times when change is absolutely necessary.
Listen to your body and become attuned to its signals
No doctor will ever know your body as well as you. Recognize there will be new boundaries that you cannot push through. Discuss and analyze what aspects of your lifestyle may be aggravating your condition and plan changes accordingly.
Be extra careful on those days that you are feeling exceptionally bad; reconsider if you should go out (especially getting behind the wheel) to take care of a particular errand or visit on a really bad day. There are times that it may be better to postpone it, or call to see if someone else can take you.
Allow yourself to grieve for your loss of wellness
Grieving for your loss of wellness is a normal process consisting of several phases:
- Denial and isolation (a defense mechanism)—a time during which we collect our thoughts.
- Anger (a normal and even a necessary emotion) can be exhibited in a number of ways—sarcasm, gossip, compulsiveness, and intolerance. It is important to find appropriate ways to express and direct this anger.
- Bargaining is when you try to cure yourself with good intentions and realize these efforts are in vain.
- Depression can set in when you realize that neither anger nor good intentions will make the illness go away. It is normal to experience some degree of sadness when you confront your loss of health and previous lifestyle. You need to let this phase run its course, but if this sadness reaches a point that your basic daily functioning becomes extremely difficult, then professional intervention should be considered. In due time, you will regain a sense of proportion. You start to realize that, although this illness has closed some of life's paths, the journey can proceed on other, equally challenging and meaningful paths. It is helpful to take stock in what remains, rather than fixate on what is lost.
- Accepting the illness and changes that this illness brings does not mean that you like what has happened, but that you are working with reality, striving to have more of life rather than less, and emerging as a "new" self.
Chronic illness cannot be hidden from the family
Your family may not say much but it does see the effects of your chronic illness.
When people are newly diagnosed, there is an enthusiasm and willingness by other family members to set aside their personal agendas for a while and help the patient rise above the problem. But when the problem appears to be ongoing, it can often drive people apart.
The family members may not share the physical symptoms, but they may suffer fear, anger and grief from what has happened.
Due to the disruption caused by the illness, there could also be feelings of resentment. Often problems prior to illness can escalate.
"Words can sting, but silence breaks the heart" as Sefra Kobrin Pitzele reminds us in her book, We Are Not Alone: Learning to Live with Chronic Illness.
Spouses/other family members may avoid asking how the patient is doing for fear of having to hear about it and deal with feelings. It is important to share and acknowledge each other's feelings, exercise common courtesy, and come up with a new definition of "normal" in order to keep the relationship alive.
It is also important not to allow illness to always be at the center of attention and to build upon the common interests/experiences that hopefully still exist. Some families may benefit from counseling by professionals with an expertise in dealing with the impact/effects that chronic illness can have on the whole household.
Stay emotionally healthy
- Journaling is "stream of conscious" writing about whatever flows from your mind. Keep notebooks handy to capture these thoughts. No one needs to read or judge it. It can be helpful to track the ups and downs of the illness, empty worries from the mind to paper, and/or record gratitude moments. An overactive brain can lead to feelings of anxiety, confusion, indecision, and mental paralysis. Every thought is a biochemical event that has an effect on body and mind functions.
- Use self-talk and positive re-affirmations to tell yourself that you are doing the best you can and treat yourself with dignity, respect and love for who you are and not what you can do. Don't apologize for being ill or having limitations.
- Practice some form of body/mind relaxation techniques, breathing exercises, and/or use meditation tapes.
- Change your outlook—ME/CFS, FM or any other chronic illness will bring people to a fork in the road: one path can lead to bitterness, anger and despair; and the other can bring peace, acceptance, hope, and courage. When you cannot change your circumstances, then the only choice is to change your reaction and attitude. Moreover, changing how you get through daily activities should not take away from your intellect, sense of humor, and overall value. Do not measure your worth by how much can be accomplished. Sometimes your opinion of yourself may be based on inaccurate information or unreasonable expectations.
- Reduce stress—organize your day so that you can be in control of your time and activities, allow a "cushion" of extra time to minimize rushing. Evaluate if a particular situation warrants the kind of reaction or attention that you're giving it. Walk away from stressful situations that are not yours, and try to avoid toxic people.
- Seek a support system—when you find that you are becoming more isolated and lonely due to the illness, seek and develop outside sources of support with people who can relate to your situation. Do pay attention to how you behave when receiving support (by not being too pushy, negative, or defensive). Participate in a support group for as long as you feel it is of benefit for you. Try to attend several different groups to find which one has the focus and style most compatible to your needs. However, appreciate the purpose of a support group-it is a "self-help" forum for encouragement, sharing and receiving information and ideas. It is unrealistic for individuals to receive answers to all their specific problems and even find the "cure". People need to realize that each person has his/her unique body chemistry and the results may vary significantly amongst group members. There is no "one path" to recovery. Remember that more often than not, the leaders are also sick, dealing with the same issues, and could use some assistance to keep things going.
- Spiritual needs—when faced with an emptiness or loss of purpose, focusing on expanding and exploring your spiritual side (not necessarily through organized religion) can be very therapeutic. Prayer and meditation can bring solace, encouragement, and strength.
Improve your overall state of health and well-being
Try to eat more wholesome, natural foods and consider adding nutritional supplements to boost and support your body systems (under the supervision of a health-care provider).
Avoid "SCANT" (per Dr. Charles Lapp) which refers to sugar, caffeine, alcohol, Nutrasweet, and tobacco.
Those individuals who have problems with bloating and diarrhea may want to avoid dairy and wheat products and in general, try to identify food sensitivities.
Increase your intake of pure water to 8 full glasses per day and add some salt back into your diet (check with your doctor first if this would conflict with other medical conditions).
Take extra good care of your teeth since they can be a hidden source of bacteria and toxicity.
Engage in some sort of low level interval exercise (a few minutes of activity alternated by rest, then a few more minutes of activity until about 3 sets of brief activity are completed, also recommended by Dr. Lapp).
Modify your home by making it more comfortable for you.
Analyze what motions/activities cause unnecessary pain/effort and think about how to improve these.
Reorganize your kitchen so that you reduce extra steps and stop putting things away that you use several times a day (like pots and pans).
Accommodate the kitchen and/or bathroom with devices that help you deal with specific problems (like using a stool to sit on) and the bottom line is always "strive to simplify."
Resting and pacing are the two most vital parts of adjusting one's lifestyle
Rest is necessary for energy conservation and a return to neutrality or "slow idle" before going to another task. When setting up a schedule, rest periods are just as important as work periods.
Pacing is maintaining activities at even keel, usually at a much lower pace than healthy individuals, and breaking up the day into multiple work, rest and play segments.
Switching between tasks will help to give certain muscles and body postures a break.
Learn to prioritize and decide what is most important for today, next week, what can be delegated to someone else, and/or which things may have to be left undone.
If something important is coming up, then conserve your energy for that.
Try to stay prepared for unexpected circumstances by having some extra supplies, batteries, medicines, bottled water, and food on hand in the event that you are unable to leave the house due to a flare-up of your condition, bad weather, or car problems.
In short—be flexible and try to stay within your "energy envelope."
Incorporate play and laughter
An important part of pacing in the work/rest routine is to have a little pleasure and not when all the work is done!
Don't postpone fun until when you feel better or new medicine is found for a cure. You need it now!
It is crucial to find ways to escape or distract yourself from the illness. There is more than one way to have fun and it doesn't have to be what you did before.
Read uplifting/inspirational material, chat with friends, get some fresh air by taking a brief walk or sitting on a porch, or watch a funny tape or TV show.
Look out for new things to try like container-gardening that can be done on a balcony or deck; attend a class or presentation (many local libraries offer free programs or lectures on various topics); treat yourself to a cup of tea at Barnes & Noble while you browse through magazines; listen to soothing music; and/or consider getting involved with a little volunteer or advocacy work.
Look for small pleasures and things that still bring you joy and comfort. Every so often, it is important to put the "what if's" aside (with regards to what might happen if I go and participate in this activity) and take an occasional gamble at trying something different or going out somewhere.
The outcome could turn out to be a very positive experience, the dreaded consequences may not be as bad as feared, and even if they are, it just may be worth it psychologically for the chance to break away from the drudgery of the daily grind.
Be open-minded to noninvasive remedies
Non-invasive remedies may include trying various forms of adjunct therapies, such as hydrotherapy (vertically standing in fairly warm pool to mobilize lymphatic fluid via hydrostatic pressure and/or doing gentle movements in the water); bodywork—receiving therapeutic forms of massage, learning posture retraining exercises, such as the Feldenkrais method specifically designed to help individuals retrain their muscle movements and posture, and/or engaging in suitable stretching or conditioning exercises; simple treatments such as using cold/hot pack applications in an alternating manner (cool ice/gel packs covered by towel and applied to neck and shoulders until area is cooled off; switching to hot, moist towel or a hot pack which will improve blood flow); and using shoe/orthotic inserts which may prevent you from walking on sides of feet thereby keeping the body in better alignment; and lastly, identifying and correcting perpetuating factors.
Of course, it is understandable that each of us will pick and choose those therapies that are financially affordable or physically doable. However, the two key suggestions are not to give up hope and always try to take the best possible care of yourself physically, mentally, and spiritually.
"Working toward peace of mind rather than perfect wellness ensures having an attainable goal. Hope cannot heal us but it can help the healing process."—Dr. Katrina Berne.
Editorial comment on "Self-care Strategies"
by Rita Sanderson, 2010
Although the article "Self-Care Strategies" was published in the UPDATE about 8 years ago, many still consider this to be an “evergreen” piece. Whether we are individuals who are newly diagnosed or those who have lived with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or Fibromyalgia (FM) for some time, it will always be important to figure out how to take care of ourselves and find ways to lead our lives to the fullest.
To achieve this, it becomes necessary to examine and re-evaluate if what we are doing still works and/or if we are getting the most of what is available.
It is also essential to stay current on the latest news and developments (i.e., healthcare, programs, services or discounts) and take appropriate action.Therefore, with this in mind, the purpose of this editorial is to touch on the things which have changed the most significantly over the years.
Without a doubt, advances in technology have impacted daily life for everyone—from paying bills on-line or checking out at the grocery store, to how health care services are provided and managed. Nowadays, many doctors communicate with patients via email and more often than not, prescriptions are transmitted electronically to the pharmacy. If someone is prescribed “controlled” medications, prescriptions usually have to be dropped off at the pharmacy in person, showing proper identification.
Dealing with "controlled" medications
As of July 2010, 34 states are reported to have on-line databases, called the Prescription Drug Monitoring Program (PDMP), that keep track of controlled prescription medications; however, each state assigns its own agencies to oversee this process. The Commonwealth of Massachusetts recently finalized significant amendments to its PDMP regulations which will take effect on January 1, 2011.
One of the primary revisions is the expansion of the drug categories which must be monitored and reported on by pharmacies, to include Schedules II through V (which means not only narcotic prescription medications are to be tracked, but also amphetamines, benzodiazepine, and barbiturates (with few exceptions)). Pharmacies will be required to submit reports at a higher frequency and customers/patients will have to show their IDs more often for a wider range of drugs.
The reason for mentioning this development is because physicians and pharmacies will have to take extra measures to be sure that they comply with each state’s criteria. Since patients with ME/CFS or FM often use a combination of medications, often from these categories/schedules and possibly from multiple doctors, it is not unreasonable to expect that patients will be part of this equation.
Patients need to know this will take place in the not too distant future and to prepare for any changes taken by their physicians. Some patients may have already signed a ‘treatment agreement’ with a prescribing physician or clinic (often used at pain management centers) which states that they can accept prescriptions for certain medications only from this practitioner. The patient must contact this practitioner in the event of an emergency, and may be required to use only one pharmacy to fill their prescriptions as well as agree to multiple other requirements (i.e., not making any changes in how they use medication they’ve been prescribed).
These agreements (contracts) allow few exceptions or excuses (if any), so the take-away lesson is for patients to be sure they understand what they’ve agreed to and what is expected of them. It would be wise for patients to find out if or how the revised PDMP will affect them.
Electronic health records
Technological advances have changed how diagnostic data can be captured (as digitized images), allowing closer inspection of problem areas as well as the sharing of medical data within a given hospital network. Though electronic medical records are becoming the norm, not all hospitals are on the same network (i.e., Partners HealthCare is an integrated health system that is limited to several major hospitals in Boston).
However, patients can obtain test results from one hospital on CD media and forward this data to a physician who is in another network. Some doctor’s offices will accept printed reports from other doctors or hospitals, which will be scanned in and added to the patient’s records. So, be sure to inquire about how tests and records are now being handled by your physician’s office or hospital.
Using social media
How people interact with each other is the most profound example of what is possible nowadays. Just about everyone, at some point, has used the Internet to connect with other individuals with mutual interests, hobbies, or who are going through certain life events, and many participate on social networking sites like Facebook.
Being able to find out how others are doing with ME/CFS or FM, share experiences, ideas or information, receive or give encouragement, and make new friendships makes a huge difference in the lives of chronically ill people. Many live alone or may not have anyone around them who truly understands.
Illness-specific discussion boards can be very helpful. Start out with well-known organizations that offer this service—most of these will be monitored and participants will be asked to register and to introduce themselves. Over the last couple of years, there are more webinars (usually free) for which you can register to view and learn.
As far as Facebook goes, use common sense and discretion—create privacy settings which limit access to your account to “confirmed” friends, don’t reveal too much about yourself or your doings, and be careful about using applications (apps) and games because they take you and your account info into an independent site.
Also watch what you click on/agree to, because some activities/sites will charge a fee. Long-distance phone calls (including international ones) are much cheaper when using Skype—this program allows calls to go through the internet to land lines and mobile phones. If friends or family live far away and travel is difficult, Skype is a way to make video calls, as long as both parties are set up on Skype and have a simple webcam on each end.
Do try to take advantage of today’s technology (including assistive tools, like voice-activated software) to help decrease the isolation and loneliness that comes with ME/CFS or FM.
References
We Are Not Alone—Learning to Live with Chronic Illness by Sefra Kobrin Pitzele, NY, Workman Publishing Co., 1st edition, 1986.
Running on Empty (revised edition) by Dr. Katrina Berne, CA. Hunter House; 2nd Revised edition, 1995.
The Fibromyalgia Advocate: Getting the Support You Need to Cope with Fibromyalgia, and Myofascial Pain Syndrome by Dr. Devin J. Starlanyl, CA, New Harbinger Publications; 1st edition, 1999.
Fibromyalgia, A Handbook for Self Care and Treatment by Janet A. Hulme, M.A., P.T., MT, Phoenix Pub. 2nd edition, 1995.
The Diagnosis of Chronic Fatigue Syndrome: An Assertive Approach, by Drs. Paul Cheney and Charles Lapp, The CFIDS Chronicle Physicians Forum, 1991, pp. 13-19.
More resources
Books about Fibromyalgia and ME/CFS
CFIDS & Fibromyalgia Self-Help. Resource for an extensive collection of articles, audio material and on-line courses created by Bruce Campbell, Ph.D. specifically for individuals coping with ME/CFS and FM.
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Pain 1
Advocacy 39
Congress2016 1
Documents used in Congress visits March 2016
Disability 23
Coping 27
Humor 1
Research 5
Notice about names
The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS.
Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.