ME/CFS: Did you know?

ME/CFS: DID YOU KNOW?

• ME/CFS is short for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. ME/CFS is a serious, complex illness with many systemic features.

• ME/CFS and Chronic Fatigue are not the same. Contrary to the stereotype, having ME/CFS is not about being chronically fatigued or tired. As Laura Hillenbrand, ME/CFS sufferer and author of Seabiscuit says, “This illness is to fatigue what a nuclear bomb is to a match. It’s an absurd mischaracterisation”.
  

• At least 100,000 Australians have ME/CFS. By way of comparison, about 22,000 Australians have HIV and about 15,000 have Multiple Sclerosis.
  

• People with ME/CFS can be mildly, moderately or severely affected by the illness, with differences in functional ability levels. ME/CFS can be a fluctuating condition and severity can vary during the course of the illness.
  

• 25% of people with ME/CFS are severely affected. Those who are severely affected can be house-bound, wheelchair and bed-bound and dependent upon carers for their everyday needs.
  

• ME/CFS does not just affect the lives of sufferers. It also has a dramatic impact on the lives of partners, parents, siblings, other family members and friends who may need to assume the role of carer.
  

From the Overview of the Canadian Consensus Document on ME/CFS:

• ME/CFS “is more prevalent than lung cancer and AIDS”. p1
  

• The principle symptoms of ME/CFS are “symptoms from neurological/cognitive, autonomic, endocrine and immune dysfunctions” as well as “post-exertional malaise, fatigue, sleep dysfunction, pain”. p8

• “Chronic fatigue must not be confused with ME/CFS because the “fatigue” of ME/CFS represents pathophysiological exhaustion and is only one of many symptoms. Compelling research evidence of physiological and biochemical abnormalities identifies ME/CFS as a distinct, biological, clinical disorder”. p1
  

• ME/CFS patients have “an average of 8% reduction of brain tissue” and “the volume of gray matter of the brain [is] significantly reduced”. p5
  

• “Neurocognitive impairments involving concentration and memory are cited as some of the most disruptive and functionally disabling symptoms of ME/CFS”. p5
  

• “Chronic Orthostatic Intolerance (COI), the inability to sustain upright activity (standing, sitting or walking), is very common”. p6
  

• “Many infectious agents may trigger ME/CFS”. p7
  

• “It is essential that the patient does not exceed his/her endurance limitations or activity boundaries too often or too deeply because this can cause a severe, long-term relapse”. Self-pacing is vital. p10
  

• “It is most disturbing that even though post-exertional malaise/fatigue is a hallmark feature and a criterion of ME/CFS, patients are often prescribed exercise unwisely”. People with ME/CFS respond different to exercise than healthy people, with decreased cardiac output, decreased cerebral blood flow, decreased cerebral oxygen, decreased body temperature and impaired oxygen delivery to the muscles. Worsening of symptoms and illness relapse can occur. “As much care must be taken in prescribing exercise as prescribing medication to ME/CFS patients”. p4,12
  

• Graded Exercise Therapy (GET) had the “highest negative rating of any of the pharmacological, non-pharmacological and alternate approaches of management covered in the questionnaire and may help explain the high drop out rates noted in some of these [exercise] programs”. p49 (full version of Canadian Guidelines)
  

• Cognitive Behavioural Therapy (CBT), a form of counselling, is mistakenly touted as a curative treatment for ME/CFS by some medical practitioners. ME/CFS is not a psychological illness. “Proponents ignore the documented pathophysiology of ME/CFS”, and their studies “excluded more severe cases as well as those who have other symptoms that are part of the clinical criteria of ME/CFS” and “fail to cure or improve physiological impairments”. p10
  

• ME/CFS can be “‘more debilitating than most other medical problems in the world’, including patients undergoing chemotherapy and HIV patients (until about two weeks before death)”. p3
  

• An individual’s recovery prospects can’t be accurately predicted. Some people do improve or recover over time. Studies indicate that “0% to 6% … of adults return to their pre-illness level of functioning. Relapses can occur several years after remission. Progressive degeneration of end organs, particularly cardiac or pancreatic failure, may result in death, and suicide is a risk. The prognosis for children and youth is much better”. p1
  

Refs:

Overview of the Canadian ME/CFS Guidelines

Full Canadian ME/CFS Guidelines

An international clinical milestone, the Canadian Guidelines represent the current best practice guidelines for diagnosing, treating & managing ME/CFS.