The Committee for Justice
and Recognition of Myalgic Encephalomyelitis
Learning about Myalgic Encephalomyelitis
How Serious is ME ?
The complete answer to this question is clearly important and not yet fully established. However the families of patients that have succumb to this disease may hold a different opinion. These few brief reports on this page will help demonstrate the diverse course and consequence of infection with Myalgic Encephalomyelitis. ME has a variety of manifestations and outcomes, some patients improve but many more follow a chronic trajectory. Lifelong disability is common.
The full range of symptoms and consequences of ME are too numerous to fully discuss here, however the most dangerous can be described as related to three factors. Infection of the brain, Metabolic changes and Immune dysfunction.
Testimony Before The FDA Scientific Advisory
February 18, 1993 by Paul R. Cheney M.D., Ph.D. Charlotte, NC
My name is Dr. Paul Cheney. I am a general internist by training.
I was invited by the CFIDS Association, a patient group of some 30,000 members, to present the perspective of a clinician in the trenches treating chronic fatigue syndrome. It has now been over eight years since I first became conscious of this disorder as a distinct clinical entity. I watched in awe as over 200 cases appeared over a span of six months in a small community on the north shore of Lake Tahoe where I practiced in 1984. Since then I have evaluated over 2500 cases of chronic fatigue of which over 2000 cases meet the CDC case definition.
I currently direct the Cheney Clinic in Charlotte, NC, (which, with a staff of fifteen, is devoted entirely to the diagnosis and management of CFS). We have carefully evaluated in the three years of our existence over 1200 cases from 45 states and 6 foreign countries or territories. 78% meet the CDC case definition. We have seen the worst and the best of the range of scenarios that can befall a patient with this disorder. At best, it is a prolonged post-viral syndrome with recovery or improvement within one to five years. At worst it is a nightmare of increasing disability with both physical and neurocognitive components.
The worst cases have both an MS-like and an AIDS-like clinical appearance. While CFS is not generally fatal, we have lost five patients in the last six months. Two by suicide and three by intercurrent infections. All were in a progressive, debilitated state. The most difficult thing to treat is the severe pain. The most frustrating is the fatigue. The most alarming is the neurologic and neurocognitive elements of this disease. Half have abnormal MRI scans, 80% have abnormal SPECT scans, 95% have abnormal cognitive evoked EEG brain maps. Most have abnormal neurologic examinations. (The most severe cases have neurologic findings which are striking but at the extreme of a continuum of abnormalities which are subtle in most cases.)
We have 155 cases with random CD4 counts below 500, 62 cases below 400, 21 below 300 and 3 below 200. An estimated two thirds of these cases will persist below 500 on repeated determinations. Only a few will meet the current case definition of ICL. None have shown progressive CD4 depletion as seen in AIDS. (Many with low CD4 levels are clinically quiescent and quite stable.) However, we have had four cases of AIDS defining opportunistic infections including MAI and pneumoncystis pneumonia and two cases of spontaneous esophageal candidiasis. (One of these patients has had repeated bouts of opportunistic infections but only one has CD4 depletion.) 40% have impaired cutaneous skin test responses to multiple antigens. Most have evidence of T-cell activation. 80% have an up-regulated 2-5 A anti-viral pathway on a single determination.
From an economic standpoint, this disease is a disaster. 80% of the cases evaluated at my clinic are unable to work or attend school. The average length of illness at the time of presentation is 3.8 years. 90% have become ill since 1980. The yearly case production, if plotted, is exponential. Most are already on or will shortly be on some sort of disability plan, public or private. In a recent survey of 20 consecutive patients at our clinic, the average dollar figure spent on medical care before coming to our clinic was $15,000 with a range of from $2,500 to $50,000. Most patients had seen more than ten physicians. (Very few were happy with their care or treatment at the hands of ordinary physicians, but especially medical specialists. The worst care is rendered by HMO's and national diagnostic clinics. The best care is rendered by caring family physicians.)
The most common reasons given to come to our clinic are 1) To obtain a definite diagnosis 2) To seek treatment options and 3) To document disability for subsequent social security disablity applications. We are frequently depositioned for disablity and other types of litigation. (Many cases involve divorce as we witness the disintegration of the family unit. We have seen litigation against schools to force homebound teaching of impaired children with CFS.) The medical legal aspects of our practice steadily grow as this disease eats at the fabric of our communities.
We admit regularly to the hospital. The most common admitting diagnoses are acute and chronic encephalopathy, uncontrolled head pain and debilitating fatigue with inability to care for self. The longest hospitalization is 5 months to date. That patient has encephalopathy, seizures and apraxia and is currently awaiting nursing home placement at the age of 37. Medicare/medicaid has to date paid $150,000 to the hospital for her care which has exceeded $250,000 since August 1992. Another patient, age 28 and also on medicare, spent 8 weeks at Emory University Rehabilitation Hospital. During her stay at Emory, she steadily worsened under standard rehabilitation protocols and was eventually transferred to me for an additional 1 month hospitalization. (She has been confined to a wheelchair for 18 months with severe lower extremity extrapyramidal motor neurnon disease.) Both of these cases are summarized in two case reports for your review.
In summary, CFS is an emerging, poorly understood disorder with a distinctive clinical presentation. I am not at all sure that it is as heterogeneous as some would lead you to believe. (I am also not at all sure that much of what I and others have been witnessing since 1980 is necessarily and old disorder. Post-viral syndromes are certainly old and certainly related but most CFS cases are much more distinctive than that. The boundaries of this disorder are certainly vague but that is true of many otherwise distinctive clinical entities.) This disorder is a socio-economic as well as medical catastrophe that will not end. I believe that government and university clinicians have spent too little time with or thought too narrowly about these patients. This disease is too complex to rely wholly on standard medical orthodoxy to explain it. When in doubt listen to a thousand patients with an open mind. Failing that, then listen to those who have spent countless hours with a thousand patients. Most of us have some wisdom to impart and most of that came from patients.
Thank you for listening,
Health status in patients with chronic fatigue syndrome and in general population and disease comparison groups.
Komaroff AL, Fagioli LR, Doolittle TH, Gandek B,
Gleit MA, Guerriero RT, Kornish RJ 2nd, Ware NC, Ware JE Jr, Bates DW.
Department of Medicine, Brigham and Women's Hospital,
Harvard Medical School, Boston, Massachusetts 02115, USA.
PURPOSE: To measure the functional status and well-being of patients with chronic fatigue syndrome (CFS), and compare them with those of a general population group and six disease comparison groups.
PATIENTS AND METHODS: The subjects of the study were patients with CFS (n = 223) from a CFS clinic, a population-based control sample (n = 2,474), and disease comparison groups with hypertension (n = 2,089), congestive heart failure (n = 216), type II diabetes mellitus (n = 163), acute myocardial infarction (n = 107), multiple sclerosis (n = 25), and depression (n = 502). We measured functional status and well-being using the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36), which is a self-administered questionnaire in which lower scores are indicative of greater impairment.
RESULTS: Patients with CFS had far lower mean scores than the general population control subjects on all eight SF-36 scales. They also scored significantly lower than patients in all the disease comparison groups other than depression on virtually all the scales. When compared with patients with depression, they scored significantly lower on all the scales except for scales measuring mental health and role disability due to emotional problems, on which they scored significantly higher. The two SF-36 scales reflecting mental health were not correlated with any of the symptoms of CFS except for irritability and depression.
CONCLUSION: Patients with CFS had marked impairment, in comparison with the general population and disease comparison groups. Moreover, the degree and pattern of impairment was different from that seen in patients with depression.
PMID: 8873490 [PubMed - indexed for MEDLINE]
Testimony at the Congressional Briefing of May, 1995
Dr. Mark Loveless, an infectious disease specialist who runs an AIDS and CFS clinic at Oregon Health Sciences University, stated that a CFIDS patient feels every day significantly the same as an AIDS patient feels two months before death. His statement was supported by data from clinical research conducted at OHSU and by the experience of other CFS experts.
Dr. Anthony Komaroff, Harvard Medical School, a CFS researcher, clinician and principal investigator of a National Institutes of Health-funded CFS research center, reported on the serious damage to the brain found in patients with CFS, apparently causing many body systems to malfunction.
Source: CFIDS Association of America, 6/9/95
See Epidemics Page
A comparison of the cognitive deficits seen in myalgic encephalomyelitis to Alzheimer's Disease.
Scholey, A., McCue, P and Wesnes, KA.
Proceedings of the British Psychological Society, 1999, January, 12.
Abstract. Twenty people with myalgic encephalomyelitis (ME, London criteria) were compared to age and gender matched controls on a number of cognitive tests. The performance of the ME patients was found to be markedly inferior to the controls and significantly different.
When the results were compared to those from 782 patients with Alzheimer's Disease (AD, from database information), the ME group fell between mild and moderate Alzheimer's patients on most tasks. Only episodic verbal memory was not disrupted to the degree seen in AD. "The extent as well as the range of the impairments... confirms the severe nature of ME."
Link between cancer, CFS
and immunosuppression studied
By Anita Dubey
The Medical Post
VOLUME 35, NO. 35, October 19, 1999
BRUSSELS - Patients with chronic fatigue syndrome (CFS) who show signs of recent immunosuppression should be monitored for certain types of cancer, a U.S. study suggests.
While the evidence is preliminary, the researchers found a higher-than-average incidence of brain tumours and non-Hodgkin's lymphoma among residents of two Nevada counties that had experienced an outbreak of fatiguing disorders, including CFS.
Results were presented here recently at the Second World Congress on Chronic Fatigue Syndrome and Related Disorders.
It's widely recognized that CFS is not a single entity with one common pathology, said Dr. Paul Levine, an epidemiology professor at the George Washington University School of Public Health and Health Services in Washington, D.C. This study suggests that immune dysfunction is an important aspect of at least one CFS subgroup.
"Cancer is not a common outcome for CFS," he stressed.
There have been many anecdotal reports of cancer among people with CFS. Another well-reported CFS outbreak occurred in a North Carolina orchestra, and a significant proportion of the musicians with CFS also developed cancer.
This study attempted to examine the anecdotal link using population data, he said.
Using the computerized Nevada Cancer Registry, researchers looked at the incidence of brain tumours, non-Hodgkin's lymphoma and breast and lung cancer in two counties in the Lake Tahoe area in northern Nevada.
An unexplained fatiguing illness occurred between 1984 and 1986, affecting more than 150 people. The researchers compared this population to a similar-sized county in the south, where no such illness was reported.
In 1986 and 1987, brain tumours and non-Hodgkin's lymphoma occurred more frequently in the Lake Tahoe area than in the south. However, there was no pattern indicating elevated incidence of breast or lung cancer in the north.
A second 10-year followup study looked at 123 patients from the Lake Tahoe area. About 40% were retrospectively classified as having CFS or prolonged fatigue.
Overall, 13 subjects reported tumours. In seven patients, the tumours developed after the onset of CFS. Interestingly, most common tumours were not present in this group, according to Dr. Levine.
The types of cancer reported included B-cell lymphoma, brain tumours, adenoid cystic carcinoma of the breast, transitional cell carcinomas of the bladder, uterine cancer, basal cell carcinoma, prostate cancer and non-Hodgkin's lymphoma. Two reported multiple primaries.
"These weren't the cancers you'd see in a typical population," he said. The most common cancers are lung, colon and ductal breast cancer, as well as prostate cancer, which one patient reported.
The mechanism for this effect might involve natural killer cell activity, Dr. Levine said. People with CFS have decreased activity, which is associated with cancer. However, low activity does not predict that a person will develop cancer.
The Cambridge Symposium
"Within the group of viral-immunological illnesses common to the temperate world, ME/CFS represents a major world health and economic threat second only to AIDS. Yet governments persist in turning their backs to this health disaster. The majority of adult ME/CFS patients in all countries are teachers, health care workers, clergy, flight attendants and their immediate families. These individuals are involved in jobs of high contact with a potentially ill public or a public recently vaccinated or immunized. They also represent professions that receive more immunizations & vaccinations.”
“The cost of their unemployment represents a major loss to the state and to their community, as well as to their families. It is incredible that governments have not taken this threat more seriously. Yet there is no national government that has contributed significant funds to help solve this problem."
Dr Byron M Hyde, page 12, Summary of the Proceedings,
First World Symposium on ME/CFS at Cambridge, England, April 1990
A special presentation by Dr. Byron Hyde discussing CFS and ME - The disease, its serious neurological profile and its historical definition and context - provides a very important perspective on ME. See this important explanation of Myalgic Encephalomyelitis here; http://www.geocities.com/tcjrme/recommend2.html
The science and medical research that helps bring these factors together can be found by studying the articles on the Fundamentals Pages and the illustration from summaries of individual cases can be seen on the Epidemics Page.
How serious is ME, is an important issue. It is likely this question will be debated for some time in the medical community. ME is a complex disease with multiple aspects with variation in individual patients. Medical scientists are working and encountering the challenge of bringing it all together. They tend to specialize, which in itself may add to the difficulties, however various research groups have made remarkable discoveries in specific areas.
From the patients’ perspective we can relate some useful general observations that can be summarized on two levels.
● For the individual Patient.
Severity of the illness for many is an extreme protracted fluctuating misery.
For many the pain is the worst factor. For others the infectious flare-ups can be the worst, a consequence of immune dysfunction, leading at times to organ damage and life threatening events, including cancer.
In some patients the infection of the Brain, spinal cord and nervous system are the most disabling. This can be expressed in numerous ways; the disruption of the autonomic system control of temperature, heart rate, intestinal motility; the hypothalamic damage affecting many organs and systems from hormone and homeostatic disruption; the demyelinative and degenerative effects on the nervous system that can result in visual changes, memory or attention deficits to dementia, further this pathology can also produce the twitching, spasms, tremors, cramp, dystonia, weakness, numbness and in rare cases paralysis.
Metabolic disturbance is another major area of the disease. A key factor is the damage to the mitochondria which leads to the pathological extreme exhaustion. This damage to the principal metabolic source of energy has profound effects throughout the body, starving the muscles, brain and immune system of energy for function and repair. The abnormal metabolism includes altered body chemistry that can also lead to severe chemical sensitivity to general toxification from common exogenous chemicals. Metabolic and chemistry changes for example can also lead to osteoporosis, disc and spinal degeneration.
Most patients may be affected by all these factors to varying degrees. Most patients will have a particular pattern of these symptoms that will predominate their experience.
● For the General Public
There is no immunity to ME, that means everyone is at risk. The next victim of this horrible disease could be your sister, your friend, your brother, your grandchildren, your neighbor, your coworker and the candlestick maker. ME is an infectious disease that has become a widespread epidemic that is not going away. We must join together, alert the public and demand action.
"People don't realise what Myalgic Encephalomyelitis is ”
"doctors would tell us there was nothing wrong"
The Evening Post
27 September 2003
CARL, 33, LOSES HIS BATTLE WITH ME
A Townhill man who battled ME for half his life has died. Carl Scott, aged 33, was diagnosed with the condition after picking up a virus while on holiday 16 years ago.
He was forced to throw away his dreams and ambitions as he struggled to find a cure for the illness.
Carl's dad John said: "Carl was struck down with a virus in Corfu and spent the rest of his life fighting against it but just got worse.
"We tried everything and even traveled to specialist clinics in London and Southampton to try and help him.
"Nowadays people are more understanding but in the early stages doctors would tell us there was nothing wrong with him.
"It was hard when we went to see doctors and they would tell Carl to pull himself together.
"But Carl was not a shirker and we could tell something was wrong with him.
"People don't realise what Myalgic Encephalomyelitis is - Carl would be laid up in bed for months at a time.
"He would get good days and come down but he'd then feel terrible for the next few days.
"To see him like this was awful - he was a lively 17-year-old boy before he caught the virus who played rugby for his school, the former Dillwyn Llewellyn Comprehensive, as well as basketball.
"He had wanted to be a chartered accountant and had planned out how he was going to do it.
"This just took his life away."
Carl, who still lived with his parents John and
Gaynor in Pantycelyn Road, was studying for his A-levels when he was struck by
ME. His father said that, although his life had been on hold since his
illness started, Carl's health had been starting to improve in the months before his death.
"It was only in the last few months that Carl had been coming to terms with it," he said.
"My daughter Amanda had two children - Jade and Jasmine - and since then Carl picked up a bit.
"His eyes would light up whenever they were around.
"It's hard to explain but in the last six months he would start taking the girls down the road for a walk with the dog.
"We thought there was a light at the end of the tunnel.
"We have got a caravan in Gower and, as Carl used to like his own time and space, we would go out there for a few hours.
"We came home on Sunday and he was sitting in the chair. It was like he was sleeping."
Carl's funeral will take place at Swansea Crematorium on Monday at 3.30pm.
The family have asked that donations are made to charity Action for ME.
ME is a neurological disorder with symptoms including exhaustion, muscle pain and memory loss.
(c) 2003 South Wales Evening
How Serious is ME ?
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GO TO EPIDEMICS PAGE FOR CASE SUMMARIES
The Committee for Justice
and Recognition of Myalgic Encephalomyelitis
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