Doctor Lapp’s Amazing Chronic Fatigue Syndrome Disability Letter

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Art: Robin Mead

Doctor Lapp is a well-respected and much-beloved doctor in North Carolina who specialized in ME and CFS who is excellent at documenting this condition.

Sadly, Doctor Lapp has now retired.

Happily, one of his patients was kind enough to share her disability letter to help other patients. You can use this letter as a tool with your own doctor to create documentation for your case.

Dr. Lapp’s letter is one of the best Chronic Fatigue Syndrome disability letters we have ever seen. You can view the entire letter here: Complete Disability Letter

What’s so great about Doctor Lapp’s letter? One of the things we like about this letter is how well it addresses each and every section of the Social Security Ruling for Chronic Fatigue Syndrome.

Let’s take a look:

CASE DEFINITION: WHAT THE RULING SAYS

Chronic Fatigue Syndrome is a systemic disorder that may vary in frequency, duration, and severity. CFS can occur in children, particularly adolescents, as well as in adults. The CDC and other medical experts characterize CFS, in part, as a syndrome that causes prolonged fatigue lasting 6 months or more, resulting in a substantial reduction in previous levels of occupational, educational, social, or personal activities. In accordance with the CDC case definition of CFS, a physician should make a diagnosis of CFS “only after alternative medical and psychiatric causes of chronic fatiguing illness have been excluded.”

Case Definition: Clinically evaluated, persistent or relapsing chronic fatigue that: Is of new or definite onset (that is, has not been lifelong); Cannot be explained by another physical or mental disorder; Is not the result of ongoing exertion; Is not substantially alleviated by rest; and Results in substantial reduction in previous levels of occupational, educational, social, or personal activities.

CASE DEFINITION: WHAT DOCTOR LAPP WROTE

Ms. C meets internationally accepted criteria for Chronic Fatigue Syndrome (CFS) including the 1994 CDC criteria, 2003 Canadian Criteria, and the 2015 Institute of Medicine criteria for SEID.

Other plausible explanations for her profound symptomatology have been ruled out by a careful history, a review of outside records, consultation with family members, an extensive physical examination, neuropsychiatric evaluation, and exclusionary laboratory studies as recommended by the Centers for Disease Control (Fukuda, Ann Int Med, 1994).

SYMPTOMS: WHAT THE RULING SAYS

Diagnostic Symptoms: 4 or more specific symptoms that persisted or recurred during 6 or more consecutive months of illness and did not pre-date the fatigue: Postexertional malaise lasting more than 24 hours (which may be the most common secondary symptom); Self-reported impairment(s) in short-term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social, or personal activities; Sore throat; Tender cervical or axillary lymph nodes; Muscle pain; Multi-joint pain without joint swelling or redness; Headaches of a new type, pattern, or severity; and Waking unrefreshed.

Other Symptoms. (May be present): Muscle weakness; Disturbed sleep patterns (for example, insomnia, prolonged sleeping, frequent awakenings, or vivid dreams or nightmares); Visual difficulties (for example, trouble focusing, impaired depth perception, severe photosensitivity, or eye pain); Orthostatic intolerance (for example, lightheadedness, fainting, dizziness, or increased fatigue with prolonged standing); Respiratory difficulties (for example, labored breathing or sudden breathlessness); Cardiovascular abnormalities (for example, palpitations with or without cardiac arrhythmias); Gastrointestinal discomfort (for example, nausea, bloating, or abdominal pain); and Urinary or bladder problems (for example, urinary frequency, nocturia, dysuria, or pain in the bladder region).

SYMPTOMS: WHAT DOCTOR LAPP WROTE

She is expressing all the typical symptoms and natural course of persons with CFS, including exertion intolerance, post-exertional malaise, widespread body pain, cognitive difficulties, sleep disruption and non- restorative sleep, headache, orthostatic dizziness / dysequilibrium, and numerous co-morbid conditions.

CO-OCCURRING CONDITIONS: WHAT THE RULING SAYS

Co-occurring Conditions. (May be present): Fibromyalgia (FM), myofascial pain syndrome, temporomandibular joint syndrome, irritable bowel syndrome, interstitial cystitis, Raynaud’s phenomenon, migraines, chronic lymphocytic thyroiditis, or Sjogren’s syndrome. Co-occurring conditions may also include new allergies or sensitivities to foods, odors, chemicals, medications, noise, vibrations, or touch, or the loss of thermostatic stability (for example, chills, night sweats, or intolerance of extreme temperatures).

CO-OCCURRING CONDITIONS: WHAT DOCTOR LAPP WROTE

Ms. C has been diagnosed with:

  • Chronic Fatigue Syndrome / Myalgic Encephalopathy/ Systemic Exertion Intolerance Disorder
  • Sleep disorder (difficulty initiating and maintaining sleep, non-restorative sleep)
  • Allergic rhinitis, persistent nasal/sinus congestion, and recurrent bronchospasm
  • Irritable Bowel Syndrome (IBS-M)
  • Hypothyroidism
  • Vitamin B12 and D deficiencies
  • HPA Axis suppression
  • EBV reactivation
  • Autoimmune antibodies (positive ANA) without evidence of Connective Tissue Disease
  • Joint hyperextensibility / Ehlers-Danlos Syndrome Type III

MEDICAL SIGNS: WHAT THE RULING SAYS

Medical signs. (May be present): One or more of the following medical signs clinically documented over a period of at least 6 consecutive months: Palpably swollen or tender lymph nodes on physical examination; Nonexudative pharyngitis; Persistent, reproducible muscle tenderness on repeated examinations, including the presence of positive tender points

Or any other medical signs that are consistent with medically accepted clinical practice. Examples of other medical signs: Acute infections inflammatory event may proceed onset; Frequent viral infections with prolonged recovery; Sinusitis; Ataxia; Extreme pallor; Pronounced weight change

MEDICAL SIGNS: WHAT DOCTOR LAPP WROTE

Supportive physical findings include a circumferential thought process (cognitive difficulties), non- exudative pharyngitis, lymphadenopathy, joint hyperextensibility, and hyperreflexia. She experiences intermittent periods of tachycardia that limit her physical activity.

LABORATORY FINDINGS: WHAT THE RULING SAYS

Laboratory findings (May be present): An elevated antibody titer to Epstein-Barr virus (EBV) capsid antigen equal to or greater than 1:5120, or early antigen equal to or greater than 1:640; An abnormal magnetic resonance imaging (MRI) brain scan; Neurally mediated hypotension as shown by tilt table testing or another clinically accepted form of testing; or Any other laboratory findings that are consistent with medically accepted clinical practice. Examples of other laboratory findings: abnormal exercise stress test; abnormal sleep study

“At this time, we cannot identify specific laboratory findings that are widely accepted as being associated with Chronic Fatigue Syndrome.” “Standard laboratory test results in the normal range are characteristic for many people with CFS and they should not be relied upon to the exclusion of all other clinical evidence” “The medical criteria discussed above are only examples. They are not all-inclusive.”

LABORATORY FINDINGS: WHAT DOCTOR LAPP WROTE

As is commonly seen in CFS, Ms. C has low thyroxine, low B12 and 25-OH Vitamin D, low ACTH and DHEA, evidence of EBV reactivation, autoimmune antibodies, joint hyperextensibility, heightened allergies and bronchospasm.

Cardio-pulmonary exercise testing showed an excellent work rate of 111 watts (108% of predicted), which indicates good strength. However, the aerobic capacity was only about 12 ml/min/kg (62% of predicted), which is considered severely disabled or a 75-100% whole person impairment (AMA Guidelines, Ed 5).

She was able to exert for 8:37 minutes, but the Anaerobic Threshold (AT) occurred very early at 2:17 minutes, a heart rate of 100, and 4.9 m/m/k (= 1.4 METS). This means that Ms. C cannot exceed a HR of 100 or exert more than 2 minutes without risking a flare or relapse. She only generated 1.4 METS at AT. In perspective, it take 1.7 METS to just sit, 1.9 METS to sit and write, 3.0 METS to walk leisurely in a mall, so she is markedly impaired. Furthermore, her core temperature was 98.7 F to start, and fell to 98.5 F after maximal exertion. A drop in core temperature is abnormal, indicating a neuroendocrine failure and inability to cope with physical, mental, or emotional stressors. Exercise ECG was unremarkable, no ischemia or arrhythmia noted.

MENTAL LIMITATIONS: WHAT THE RULING SAYS

Mental limitations (May be present): Some people with CFS report ongoing problems with short-term memory, information processing, visual-spatial difficulties, comprehension, concentration, speech, word-finding, calculation, and other symptoms suggesting persistent neurocognitive impairment. Ongoing deficits documented by mental status examination or psychological testing; Persistent neurological or other mental problems appropriately documented in the medical record

MENTAL LIMITATIONS: WHAT DOCTOR LAPP WROTE

Computerized neuropsychiatric testing demonstrated good processing and psychomotor speeds. Visual memory, reaction time, simple attention and motor speed were low average. Verbal and composite memory, complex attention, cognitive flexibility (multitasking) and executive function (planning, organizing, etc.) were poor ( <2 %ile) and confirmed significant cognitive impairment.

A structured interview and the Hospital Depression and Anxiety Scale have revealed only mild-to-moderate depression (HDAS Score of 13, where > 10 is significant and 21 maximum), which is probably reactive and certainly not severe enough to explain her current disablement.

FUNCTIONING: WHAT SOCIAL SECURITY SAYS

Social Security also provides a Fact Sheet for Medical professionals. This fact sheet requests that physicians provide information on the person’s abilities to perform work-related activities on a sustained basis:

“Examples of work-related functions (8 hours/day and 5 days/week): Physical work-related functions: Walking, standing, sitting, lifting, pushing, pulling, reaching, carrying, and handling. Mental work-related functions: The ability to understand, remember, and carry out simple instructions, the ability to use appropriate judgment, and the ability to respond appropriately to supervision, co-workers, and usual work situations, including changes in a routine work setting.”

FUNCTIONING: WHAT DOCTOR LAPP WROTE

From a functional standpoint, Ms. C requires considerable help from her family members. Ms. C has had to move in with her family because she was unable to function by herself. A neighbor has been mowing the lawn and managing the landscape. She has hired household help as needed. Ms. C reports about one hour of light gainful activity daily, otherwise she must rest. She can sit for about 30 minutes, recline about one hour at a time. She can only stand comfortably for 5-10 minutes, and if she walks leisurely up to 30 minutes, then she must retire to the bed afterward.

She reports difficulty with fine motor coordination, manipulating small objects and holding onto items. She has difficulty kneeling, bending, stooping, and getting up from a chair or the floor. She can lift and carry a gallon jug ( = 8 pounds), but has difficulty lifting 10 to 25# (say pet food), and could not carry such a weight. She infrequently has the energy to cook a meal, mostly relying on raw fruit and vegetables, frozen prepared meals, or light sandwiches such as PB&J or a bagel with cream cheese.

MEDICAL OPINION: WHAT SOCIAL SECURITY SAYS

The fact sheet asks physicians to provide: “Your opinion about the person’s abilities to perform work-related activities on a sustained basis (8 hours/day and 5 days/week)” “Your opinions about both physical and mental functions and, to the extent possible, the reasons for your opinions, such as the clinical findings or your observations.”

MEDICAL OPINION: WHAT DOCTOR LAPP WROTE

In short, Ms. C represents a classical case of Chronic Fatigue Syndrome. She is markedly impaired by weakness and exhaustion after minimal every day activity; post-exertional malaise that may prostrate her for days; muscle and joint pain that can affects mobility, mood, concentration and sleep; lightheadedness and balance problems that limit climbing, standing and ambulation; recurrent headaches that interfere with concentration and dealing with others; gastrointestinal problems that may require proximity to home or a commode; sleep disruption that prevents her from keeping normal work hours and leads to daytime somnolence; and neurocognitive dysfunction including problems with memory, attention, reaction time, motor speed, multitasking, planning/organizing, comprehension and calculation.

The summation of all Ms. C’s impairments is such that she is unable to perform even sedentary activity on a regular, predictable, or sustained basis. She is totally incapable of working 8 hours per day, 5 days per week, week after week.

Despite medical therapy and good compliance, there has been little improvement in Ms. C’s condition. CFS is a chronic (permanent) illness and the prognosis is not encouraging. While patients may improve partially, less than 10% fully recover (Booner D, J Neurol Neurosurg Psych, 1994; Joyce J, QJM, 1997).

Based on my experience with hundreds of similar patients, it is my opinion that Ms. C will not improve significantly in the next 12 months, probably much longer.

4 thoughts on “Doctor Lapp’s Amazing Chronic Fatigue Syndrome Disability Letter”

  1. Doctor Lapp is NOT retired, THANK GOD because he is literally the BEST doctor this disease has!!!
    I’ve been seeing him for about 1 1/2 years and thankfully you are only required to see him in person once per year and the rest are phone visits, so you don’t have to live in North Carolina. However if you do want to see him you better call and get added to his waiting list, for example it took 1 1/2 YEARS to get me in to see him. He stays up to date on all the latest research and he directly works with the CDC etc and writes scientific papers for them on ME/CFS. Your first visit is VERY VERY DETAILED, for example he was personally with me in the room from 9-4:30 I guarantee you that a doctor has never given you an exam that long lol 😂 he performs SEVERAL tests on you and goes over all your bloodwork and paperwork from all the other doctors you have seen. He sets up a treatment plan for you and also gives you a big spiral notebook with all kinds of information on this disease and even a DVD movie on ME/CFS and also he records your whole visit and puts in on a CD for you so that way you won’t forget anything that was talked about in your visit!!! His office is ME/CFS friendly, dimmed lights in the room, a chair and ottoman for your feet to be propped up, Kleenex for your tears, drinks ETC ETC
    The only thing that is a negative is he does not accept insurance, he will however give you paperwork so you can file it with your personal insurance BUT if you have Medicare they do not cover anything from his office, he is around $550 an hour which is super expensive BUT you get what you pay for and he is worth it!!!

    Like

  2. My son was diagnosed with severe ME last year. He was extremely fortunate to get in with Dr. Lapp at Hunter Hopkins. They are extremely knowledgeable and compassionate professionals.

    Liked by 1 person

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