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The Water Bearer

Details: Last Updated: 28 February 2009 28 February 2009

A water bearer in India had two large pots, each hung on one end of a pole which he slung across the back of his neck. One of the pots had a crack in it, and while the other pot was perfect and always delivered a full portion of water at the end of the long walk home from the stream to the master's house, the cracked pot arrived only half full.

For a full two years this went on daily, with the water bearer delivering only one and a half pots full of water to his master's house. Of course, the perfect pot was proud of its accomplishments, perfect to the end for which it was made. But the cracked pot was ashamed of its own imperfection, and miserable that it was able to accomplish only half of what it had been made to do.

After two years of what it perceived to be a bitter failure, it spoke to the water bearer one day by the stream. "I am ashamed of myself, and I must apologize to you," it said. "Why?" asked the water bearer. "What are you ashamed of?"

"I have long been able to deliver only half my load, because this crack in my side causes water to leak out all the way back to your master's house," the pot answered. "Because of my flaws, you have to do all of this work, and you don't get full value from your efforts."

The water bearer felt sorry for the old cracked pot, and in his compassion and wisdom said, "As we return to the master's house today, I want you to notice something: the beautiful flowers along the way."

Indeed, as they went up the hill, the old cracked pot took notice of how the sun warmed scores of beautiful wildflowers on the side of the path, and this vision cheered it some. But at the end of the trail, the pot still felt bad about its "disability"—because once again it had leaked out half its load—and thus once again it apologized to the water bearer for its perceived failings.

The water bearer said to the pot, "Did you happen to notice that there were flowers only on your side of the path, and not on the other pot's side? That's because I have always known about your flaw, and I took advantage of it. I planted flower seeds on your side of the path, and every day while we have walked back from the stream, you've watered them. For two years I have been able to pick these beautiful flowers to decorate my master's table. If you were not just as you are, he would not have such beauty to grace his house."

****

Each of us has our own unique flaws; we are all, in some way, “cracked pots.” But, if we will recognize this and the potential benefits of those flaws, we will see that we can “grace the beauty of the master’s house.”

Don’t be afraid of your flaws or limitations. Acknowledge them and how they may confer advantages you may never have dreamed of in life’s pathway. Go out boldly, knowing that in our weaknesses we often discover our strengths as well.

The Massachusetts ME/CFS & FM Disability Handbook

Details: Last Updated: 05 November 2023 05 November 2023

The information in this booklet is invaluable to those with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) who cannot work and are seeking financial stability. The Table of Contents is displayed below.

This booklet has been revised in 2021. However, some detailed information such as the income and asset eligibility for SSI change periodically. The revised booklet contains the new 2014 Social Security CFS Ruling which is now used for evaluating ME/CFS disability cases. The booklet also contains information on the 2012 Social Security Fibromyalgia Ruling. Note: Social Security Administration still uses the term "CFS" rather than ME/CFS.

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Introduction

Eligibility for Social Security Disability Programs
Disability Eligibility Standard for SSDI and SSI
Financial Eligibility Standards for SSDI
Financial Eligibility Standards for SSI
Emergency Aid to the Elderly, Disabled & Children Program (EAEDC)
Food Stamps and Fuel Assistance

How to Apply for Social Security Benefits if You Have Chronic Fatigue Syndrome

I. The Application Process

II. When to Obtain a Lawyer

III. When to Apply for Disability

IV. Your Doctors' Letters to Social Security

V. Your Description of the Disabling Effects of Your Illness

VI. Contacting your Congressman about your Social Security DisabilityApplication

Appendix I: The 2014 Social Security Ruling for the Evaluation of CFS Disability Claims

Appendix II: Obtaining a CFS Diagnosis Using the 1994 CDC CFS Definition

Appendix III: Documenting Fibromyalgia to Social Security

Appendix IV: Helping Your Doctor Document Your Illness to Social Security (and to Other Disability Carriers)

A. Memo from a disability lawyer.; Recommended documentation of CFS Disability Claim to be Submitted to Social Security and/or for Private/Employer Disability

B. Checklist of ME/CFS Symptoms

C. Some Tests to be Conducted to Help Determine Objectivity of CFS and/or Disabling Symptoms

D. Excerpts from previous Social Security Administration Documents which provide guidelines for documenting CFS disability.

E. Incapacity Checklist

F. Sample Doctor's Letters Documenting CFS Disability

G. Helping Your Doctor Prepare Your Medical Report

Appendix V: How to Prepare for an Administrative Law Judge Hearing (3rd Stage)

3 Memos from a disability lawyer.
Updated Specific Suggestions on Preparing for the Social Security Hearing
Necessary Elements in Preparation for Social Security Appeal Hearing of a CFS Disability Case and Further Suggestions

Appendix VI: The Use of a Diagnosis of Depression or Other Mental Impairments in a CFS Social Security Application

Introduction

A. The "Legal Services" Position: The positive use of secondary depression and mental impairment in a disability application.

Problems which may develop between CFS patients and their attorneys regarding documentation or submission of mental impairment, diagnoses.
Issues of cognitive dysfunction and neuropsychological testing

B. The case for avoiding, if possible, the use of depression or other mental impairment diagnosis a CFS disability application.

Appendix VII: Landmark Federal Court Decision

Establishes Right of Persons Diagnosed with and Disabled by CFS to Obtain Social Security Benefits.
Additional Federal Court decisions granting CFS and fibromyalgia disability claims.

Appendix VIII: Disability Case Reviews

Appendix IX: Other Disability Insurance Programs

I. Disability Insurance through Your Employer

II. Disability Retirement Benefits for State Employees and Teachers (Massachusetts)

Addendum I: Plans for Achieving Self-Support While Receiving Supplemental Security Income

Differential Diagnoses

Details: 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:

cognitive dysfunction and mood changes
central nervous system irritability, including parathesias (numbness, tingling crawling and itching sensations)
fatigue
flu-like illness: fevers, malaise, headache, muscle aches
joint aches (arthralgia) and intermittent swelling and pain of one or a few joints.
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 19^th 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

Cardiac Symptoms and Abnormalities Documented in CFS Patients: (A summary of 4 studies by Lerner et al.)

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

Details: 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:

"The thought of being forgotten is almost more painful than the illness itself."
"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."
Some pleaded for patience. "Please be patient with us—there's bound to be emotional upheavals."
Regarding assistance, the general tone was "Treat us like you would anyone with cancer or lupus or any other long term illness."
"Just ask me if I need help and how much. I hate to ask for fear of rejection."
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

"A willingness to listen."
"Showing interest in learning about my illness."
"By becoming involved in the cause."
"Friends who can accept ‘maybe' commitments."
"When friends adjust their plans so I can participate."
"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.'"
"Brought in a mea1."
"Telephone call that sometimes includes a prayer."
"Believing me unconditionally."
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?

"Comparing their tiredness to CFIDS showing that they really don't get it."
"Ignoring what I said about hurting and then going right into long descriptions of their temporary pain."
"Saying, 'You're not sick, you're lazy. Snap out of it!' "
"Are you sick again?"
"The attitude that since I'm disabled I'm worthless. My accrued knowledge doesn't count."
"Come on! You can go! Think positively!"
"I wish I could lie around all day like you and watch TV."
"We need an able-bodied person here."
"You can't do anything!"
"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?

"Not knowing if I'll be able to participate in an upcoming activity."
"Never ending pain."
"Unpredictability of a good day."
"Being misunderstood."
"Not having the physical capacity to follow through on my ideas."
"Not having a romantic relationship."
"Friends who never ask if I need help."
"The financial ruin. Working brings on severe fatigue."
"Not being able to work or to do something useful."
"So many losses: relationships, social life, meaningful employment, my home, income."
"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?

"Realize that we have feelings!"
"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."
"Give us credit for what we do."
"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"
"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."
"I'm still the same person—I just don't have the abilities I used to have."
"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."
"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."
"I'm able to do a lot if I can do it at my own pace. Others can't do that, so just ask."
"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?

"Respect yourself enough to explore what affects you beneficially as well as adversely. Watch yourself. Analyze your needs."
"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."
"Read stories about overcomers and be inspired."
"Develop your faith and put it to work."
"Keep a list of things you like to do and do them according to your energy level."
"Do what gives you satisfaction and pleasure."
"Phone someone who is also suffering and offer consolation and a listening ear."
"Never feel guilty about your ability level at any time."
"Find something to laugh about."
"Stay in touch with a support group."
"Learn all you can about your illness; experiment with what you learn."
"Look for alternative treatments."
"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?

"I listen to my body when it calls out with a need."
"I've learned to rest before I'm totally drained. "
"I give myself plenty of time to prepare for anything, rest time."
"I gave up on trying to be perfect."
"I try to learn or enjoy every moment that I can."
"I don't waste energy on negative thoughts.
"I've learned to let people help me."
"I plan an enjoyable activity every day."
"I keep a journal."
"I bought an answering machine."
"I stay involved in my health care seeing a doctor regularly."
"I disconnect the phone whenever I need an uninterrupted nap."
"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."
"I have simplified my life by learning to say 'No.' "
"I accept myself as I am now, not as I was before."
"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?

"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."
"Public education is very important. We need well persons to write articles about our illness and get them in the papers."
"Funds for research are desperately needed to find the cause and cure."
"Most people have no idea what life with CFIDS is like. It's like a never-ending death process. I'm waiting to live!"
"There's a great need for compassion. It's so important, especially when we are ill."
"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."