Summary Bio

I have a long list of illnesses (see it here). In 1995 at age fifteen I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed Myalgic Encephalomyelitis, the most debilitating illness of all. (Read "Myalgic Encephalomyelitis" and "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Myalgic Encephalomyelitis


▪  MYALGIC  ENCEPHALOMYELITIS  ▪
[ = “Inflammation of the brain and spinal cord with associated muscle pain” ]

“About 90 percent of people with ME/CFS have not been diagnosed.” (CDC)

A lot of misinformation exists in the professional health care communities surrounding myalgic encephalomyelitis and chronic fatigue syndrome, causing doctors to attribute severe neurological and cardiac symptoms to “fatigue”, which in turn costs many ME patients their lives.  Since ME is also a disease of the cardiovascular and immune systems, the deaths get chalked up to heart attack or cancer instead of ME, only reinforcing the idea that ME or CFS are harmless. Make sure you get your information from sources who know that FATIGUE IS ONLY A SYMPTOM, NOT A DISEASE in and of itself.  Do the research!

M.E. RESOURCES

M.E. OVERVIEW

“Myalgic Encephalomyelitis (ME) is a chronic degenerative neuro-immune disease described in medical literature as early as 1935.  A child or adult with ME has serious immune and cardiovascular abnormalities, with resulting serious CNS (central nervous system) consequences due to brain injury.  

“The disease snatches the vital life out of patients on the level of diseases like MS, AIDS, mitochondrial diseases, end-stage renal failure, and cancer.  The unrelenting pain, cognitive impairment and exhaustion of ME are often literally unspeakable. Most times ME strikes relatively quickly (within hours, days, weeks).  

“Active and productive children and adults are suddenly robbed of vitality, with disability ranging from completely bedridden to somewhat functional.  Variable disability and lack of treatments result in lowered or poor quality of life.

“ME usually progresses to premature death due to direct and indirect complications of the disease.   Among the leading causes of death are heart failure and cancer, average life span 58.7 and 47.8 respectively, which is considerably younger than the general population (heart failure, 83.1; cancer, 72).”

“Newton’s earlier small study had found reduced heart mass and significantly reduced blood pumping by the heart, and Miwa in Japan has produced three studies showing that smaller hearts are present in people with ME” (due to atrophy).

Still searching for an accurate diagnosis with no real solid answers, I emailed my PCP multiple times during fall and winter of 2017, explaining that I was afraid of causing my own death from overexertion.  I begged for further testing, a referral to neurology, a referral to cardiology, a stress test, a phone call to the Stanford dysautonomia testing lab, anything. Just please “get me on a treadmill before my health insurance runs out”. He did not approve of any of these measures.  His only advice: no matter what, the most important thing you can do for yourself is that you keep exercising daily.  Just keep walking and using the painkillers to get through your day… and stop obsessing about your symptoms.  So I did. Or at least I tried. Then I discovered M.E. and learned I was right to be afraid for my life.

“Aerobic activity and repeated activity beyond an [M.E. patient’s] threshold worsens prognosis.”

“Dr. Elizabeth Dowsett says of ME patients, ‘20% have progressive and frequently undiagnosed degeneration of cardiac muscle which has led to sudden death following exercise.’”

“There are deaths [in M.E. patients] due to cardiac failure, brain death, tumours, and liver failure. There are sudden deaths following exercise/overexertion, and deaths which occur after a long period of slowly worsening illness. Many of these deaths are due to overexertion caused by mistreatment and so could have been avoided, if patients had been given basic appropriate medical care...

“Patients with M.E. must be given access to the appropriate care and support as soon as possible after becoming ill. This only rarely occurs currently. Access to the appropriate care has an enormous impact on the course of the disease in M.E.; many and perhaps even MOST severely affected M.E. patients would not have become severely affected had they been given the basic correct care and support when they were first ill.


“Today very few of those that are housebound by M.E. receive any appropriate medical care at all, and few patients are diagnosed very early on in the course of the disease and advised to avoid overexertion, as is appropriate. Thus the numbers of those with severe M.E. continue to rise, needlessly...

“What is so tragic about deaths from M.E. is that many of these deaths could (along with much of the suffering and severity of M.E.) have been prevented if only those patients had been given the basic level of support and care made available to patients with illnesses with comparable care needs such as multiple sclerosis and motor neurone disease.


“Deaths also sometimes occur in M.E. as a result of suicide.  As Dr Elizabeth Dowsett explains, 'It has to be said that suicide in younger patients and in earlier stages of the disability is related to the current climate of disbelief, rejection of welfare support and loss of educational and employment prospects. It is an additional and potentially avoidable factor.'



“Very often those with M.E. who commit suicide do so NOT because they are depressed but out of desperation. Because they are so ill and disabled and have no access to even basic care, or the most minimal support from friends and family... Thus deaths for suicide in M.E. could also have been prevented if only M.E. patients were given basic appropriate care...

“Moderate M.E. is more disabling than the most severe version of many other diseases and so also causes a high level of suffering.”

“Numerous studies support the assertion that exercise and, consequently, GET [graduated exercise therapy] can aggravate several characteristic ME symptoms, e.g. neurocognitive complaints, reduced exercise capacity, and widespread musculoskeletal pain, and amplifies pre-existing pathophysiological abnormalities in ME, e.g. immune dysfunction, induction of the IO & NS pathways, channelopathy and an impaired stress response. Large-scaled patient surveys and clinical practice show that CBT/GET [cognitive behavioral therapy/graduated exercise therapy] often induces a deterioration of the clinical status of ME patients and is harmful for many patients.

“Therefore, it is medically unethical to subject ME patients to CBT/GET programs or variants, like GET with limits (Nijs et al. 2008), without assessing biological abnormalities, monitoring functional impairment objectively and measuring the effect of exercise e.g. on the physical and neurocognitive performance (e.g. by using exercise test/retest measurements, blood analysis, and neurocognitive tests).”


“The three most prevalent causes of death were heart failure, suicide, and cancer, which accounted for 59.6% of all deaths. The mean age of those who died from cancer and suicide was 47.8 and 39.3 years, respectively [and heart failure, 58.7], which is considerably younger than those who died from cancer and suicide in the general population.”

“Patients in this sample are at a significantly increased risk of earlier all-cause (M = 55.9 years) and cardiovascular-related (M = 58.8 years) mortality, and they had a directionally lower mean age of death for suicide (M = 41.3 years) and cancer (M =66.3 years) compared to the overall U.S. population [M = 73.5 (all-cause), 77.7 (cardiovascular), 47.4 (suicide), and 71.1 (cancer) years of age].”

TESTING FOR M.E.

“As with a wide variety of illnesses (lupus, multiple sclerosis, and ovarian cancer for example) there is as yet no single test which can diagnose M.E. in all patients. Therefore, like these other illnesses, M.E. must be diagnosed by taking a detailed medical history, noting the type and severity of symptomatology and other characteristics of the illness and the type of onset of the symptoms. (An acute or sudden onset of symptoms is always seen in M.E. and this onset type rules out a wide variety of other illnesses associated with gradual onset). A series of tests may also then be necessary to rule out or confirm a suspected M.E. diagnosis…

“The one essential characteristic of M.E. is acquired CNS dysfunction. A patient with M.E. is a patient whose primary disease is CNS change, and this is measurable. We have excellent tools for measuring these physiological and neuropsychological changes: SPECT, xenon SPECT, PET, and neuropsychological testing...

“One objective and reproducible technique for determining and measuring functional disability that should be used consistently is Cardio-Pulmonary Exercise Testing with measurement of VO2 max, anaerobic threshold, and maximal heart rate and respiration.  The test is well established, sedentary and ill norms are published and the technology is relatively inexpensive and quite available...


“In the absence of a second exercise test, the lack of any significant differences for the first test would appear to suggest no functional impairment in [ME] patients. However, the results from the second test indicate the presence of [an ME] related post-exertional malaise. It might be concluded then that a single exercise test is insufficient to demonstrate functional impairment in [ME] patients. A second test may be necessary to document the atypical recovery response and protracted malaise unique to [ME]...



“This article examines the legal and scientific basis on which an exercise stress test can provide medically acceptable evidence of disability for the patient.  This research group's excellent work proves the post-exertional disability that ME patients suffer, much worse on average than heart failure and COPD patients...

“Tests which together can be used to confirm an M.E. diagnosis include…”

SPECT and xenon SPECT scans of the brain
MRI scans of the brain
PET scans of the brain
EEG/QEEG brain maps
Neurological examination
Neuropsychological testing
The Romberg test
Immune system tests
Insulin levels and glucose tolerance tests
Erythrocyte Sedimentation Rate (ESR) tests
Circulating blood volume tests
24 hour Holter monitor testing
Tilt table examination and standing/sitting/reclining blood pressure tests
Chemical stress tests
Physical exam
Cardio-Pulmonary Exercise Testing with measurement of VO2 max, anaerobic threshold, and maximal heart rate and respiration
Mitochondrial Dysfunction
TH1/TH2 imbalance
Natural Killer Cell Function (Activity) testing
Abnormalities of the 2-5A pathway (RNase-L ratio)
Virology
In-Depth Heart Function
Neurocognitive testing
Sleep studies
Endocrine testing
doctors & specialists @ www.hfme.org  & www.name-us.org

Out of all of the types of tests listed above, the only ones I have had access to other than a basic physical exam are one sleep test that came back abnormal and some blood tests, some of which came back abnormal and NONE of which involved any form of exercise, cardiopulmonary function, neurological function, or neck/head/brain scan.


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