Chronic Fatigue Syndrome is No Joke

November 7th, 2012
in Op Ed, syndication

Myalgic Encephalomyelitis – An Under-Recognised Disease

Written by Lily Hampton,

fatigueSMALLThis article is about one of a number of diseases that are all too frequently not properly diagnosed or correctly treated.

Myalgic Encephalomyelitis, more commonly known as ME or CFS (Chronic Fatigue Syndrome) is an extremely debilitating illness that is difficult to diagnose and has no known single cause. Sufferers not only have to adjust to the life altering effects of the illness, but, also to other people’s perceptions of them as sufferers.

Follow up:

History of the illness

ME/CFS is often considered to be a new illness that first came to light in the 1980’s. However, there have been recorded cases of illnesses presenting a similar range of symptoms from as far back as 1750. It is also possible that well known figures such as Charles Darwin and Florence Nightingale may have suffered from similar illnesses.

In 1809, an American psychiatrist George Beard recorded symptoms of an illness that he named ‘Neurasthenia’. The illness, which he found to be most common in young women, again had symptoms similar to those experienced by people who suffer with ME/CFS.

There were further outbreaks recorded in both America and the UK. In 1934, around 200 staff at the Los Angeles County General Hospital became ill with ME / CFS type symptoms, and over half of them were still unable to work six months later. A similar outbreak at London’s Royal Free Hospital in 1955 caused the hospitalization of 255 members of its staff.

Symptoms and Causes

Diagnosing ME/CFS relies heavily on the medical practitioner being able to take a full and accurate history of the patient’s symptoms, and on them being able to rule out other conditions being masked by the symptoms. Diagnosis is made more difficult by the fact that no two sufferers exhibit exactly the same type or gravity of symptoms. It is now generally understood that a patient thought to be suffering from ME/CFS will exhibit the majority of the following symptoms for a period of at least six months:

  • Fatigue – physical and mental
  • Post-exercise malaise
  • Disturbed or unrefreshing sleep
  • Pains – especially in the muscles and joints, but, often also involving severe and long lasting headaches
  • Short term memory loss, sensitivity to light and/or sound, feelings of disorientation and sensory disturbance
  • Problems with the bladder and/or bowel
  • Changes in eating patterns
  • Reoccurring flu like symptoms

There is little understanding of what causes the onset of symptoms. In many cases, the symptoms become apparent after an illness, bereavement or period of extreme stress. The onset has also been linked to glandular fever, inoculations, anemia, and life style issues. Research is also being undertaken in the possible role played by HHV – 6 (Human Herpes Virus Type 6).

The Impact of ME/CFS

ME/CFS is most commonly diagnosed in middle aged adults, but it can affect people of all ages, including children and adolescents. There is a much higher proportion of female sufferers, with only 30 % of those diagnosed patients being male.

The last estimated cost to the American economy was $22 - $ 28.6 billion a year. This figure only takes into account fully diagnosed cases, and with an estimated full recovery rate of just 5 % to 10 % of cases, it is likely to continue to have a major impact on the economy. Figures in the UK suggest that up to 25% of sufferers remain severely disabled, with many continuing to be house bound. For those who fall into the other 75%, there are varying degrees of recovery, interspersed with period of relapse and difficult choices to make in order to try and maintain a work/life balance.

Why Is it Still an Under Recognized Disease

There are several reasons for this, and many are related to the difficulty of diagnosis, and the fact that it is often misdiagnosed. Many sufferers are told it is all in their head or given prescriptions for depression, while others are still told: ‘Rest and it will get better’.

In some cases, it is due to the attitude of the medical professional and their refusal to recognize the signs and symptoms as belonging to one single illness. In Florida, only 18 doctors are included on the ‘good doctors list’ as doctors who openly recognize, treat, and respect patients with ME/CFS; there are only seven on the list for the whole of the UK.

The cause of patients with ME/CFS was not made any easier when the illness was termed ‘yuppie flu’ in the 1980’s after a large number of active, young professionals were taken ill. Their symptoms were seen as the result of their over indulgent lifestyle, and other sufferers were assumed to be either copying or to be responsible for their own ill health.

The future is positive and increasingly bright for sufferers, however; there are several large and increasingly influential patient support groups working in American, Canada, and the UK, and a few that work internationally, to increase the profile and awareness of the illness, fund research into cures, and provide much needed support to sufferers and their families. For more information on unrecognized medical conditions, you can visit

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  1. Admin (Member) Email says :

    I have suffered with a neurological disease with many symptoms in common with CFS for more than 23 years - Lyme disease. For me the serious symptoms recur at infrequent intervals, unlike CFS which has more persistent neurological symptoms. However there have been three episodes that were completely debilitating for a period of 2-4 weeks until successfully knocked down with oral antibiotic treatments each time.

    I have met people who have had Lyme disease misdiagnosed as CFS and vice versa. The same for MS and Lyme disease.

    Many neurological disorders are difficult to diagnose, but CFS probably has the most difficulties and is certainly wide spread - Lyme disease has much more localized areas of incidence.

    John Lounsbury

  2. Admin (Member) Email says :

    Comment submitted by e-mail:

    My significant other was diagnosed with Chronic Fatigue Syndrome..the name in your article ME is the British name for that disease. She may or may not have CFIDS as there still is no definitive test for CFIDS but for sure she has a pituitary tumor...many with CFID's do so if someone has those symptoms they might want to have their pituitary checked. It is treatable usually without surgery but in her case she is now on HGH for life. If not treated in time and the tumor gets very large, blindness can occur.

    The headaches are migraines and respond to migraine medication but not readily. Muscle weakness attacks are common. The light sensitivity can go all the way to seizures. Few doctors understand those seizures as they are somewhat different than the common form so only a very good neurologist will figure it out.

    There are laboratory markers that show up in those with CFIDS but they are not specific to CFID's but tend to be similar to the way a flu would present or Leukemia...but they are there all the time.

    If I lived near NYC and thought I had CFID's I would go see Dr. Susan Levine.

    The best CFID's doctor perhaps is now retired Dr. David Bell. Many years ago we made a pilgrimage to his clinic. Looks like he is still publishing and coming up with interesting stuff. If I recall correctly he is the one that suggested that my sweetie have her blood volume checked. She has very low blood volume...another (strange) characteristic of those with CFID's. That may be why the resemblance to anemia. Dr. Levine suggested the pituitary be checked. Both of those are expensive tests which can be be a problem with health insurance. Only a doctor knowledgeable in CFIDS would know to run the tests and be able to justify the cost to an insurance company. With ObamaCare that may soon be impossible so expect more suicides. I guess that is one way to control costs. When a person with a medical condition is told that it is due to a bad attitude, that creates problems within a family, isolates the person with the medical condition, and they often commit suicide for reasons ranging I assume from loneliness to guilt.

    Years ago there was a two-year mental and nervous limitation in most U.S. employee disability benefit plans (re paying benefits) so the strategy of insurance companies was to show that CFIDS was a mental disorder. Employee benefit plans fall under ERISA in the US so State Insurance Departments are not allowed to intervene on behalf of CFIDS patients living in that State who are being jerked around by their disability insurer (when it is an employee benefit rather than private insurance) or are told that if they attempt to return to work they will be immediately fired. Insurance companies have power over doctors so few doctors will stand up to an insurance company and protect their patients but are inclined to "agree" that the patient can return to work or is suffering from depression. So it is very hard for those with this condition. Again more reasons for the high suicide rate. And yet many people with CFIDS can live a productive life like Florence Nightingale. Many of the symptoms can be managed and one has to learn how to budget their energy. A normal person can overexert and get a good nights sleep and be ready to go again. A person with CFIDS can overexert and their body will accommodate it but then a week or more of post exertional malaise is the result. So learning ones limitations and living within their energy budget makes a difference and that budget varies by person and from time to time as indicated in the article.

    It is a Syndrome meaning a bunch of symptoms so it could be related to multiple causes. It is a politically incorrect disease. At one time, CDC funds authorized for CFIDS research were diverted. There are many conditions that are hard to diagnose. For many years Multiple Sclerosis was considered a mental disorder until a test for it was developed. Gulf War Syndrome which may be PTSD or exposure to spent uranium used in artillery shells is another that has symptoms somewhat similar to CFIDS. The medical profession tends to run from illnesses where they don't have drugs to prescribe or a defined procedure to perform. So few doctors have the patience for this sort of patient.

    Thank you for publishing this article. Many will appreciate it. I will suggest to my sweetie that she forward it to the CFIDS Association of America for their use.

    I don't want my comments published under my name. The CFIDS Association of America is not as effective as it used to be. So I don't feel like referring people to that group. Mainly I wanted you to know that this is the tip of the iceberg re people who are not receiving adequate health care because their conditions are not recognized by the average physician or the average physician has been encouraged to classify the condition as a mental disorder and treat accordingly. A lot of discussion recently about the over prescribing of Ritalin for kids. Not all instances of lack of concentration are ADD..the kids may be bored or have some other problem..bad vision for example.

    Tossing people onto a waste heap is a very large problem and probably getting worse.

    Name withheld upon request.



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