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Learn about the prevalence, symptoms, and misconceptions about Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME), and understand the impact it has on individuals. Discover the current research that shatters the myths about CFS and gain a better understanding of this often misunderstood illness.
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460 ~ 6 April 2006 • Module VII – Integrative Approaches re Common Health Issues: ~ chronic fatigue ~ oncology
How much difference is there between You & Me ?
Chronic Fatigue Syndrome • “This illness is to fatigue what a nuclear bomb is to a match. It’s an absurd mischaracterization." ~ Laura Hillenbrand, battling CFS, bestselling author of book, Seabiscuit
Chronic FATIGUE Syndrome • the name chronic fatigue syndrome itself has caused many of the misconceptions and trivialization of it • Fatigue is a symptom, not the illness • Now often prefer Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) • No known cause, no definitive cure
Understanding Chronic Fatigue Syndrome (CFS) • CFS disproportionately affects women, & has long been under-recognized & under-diagnosed • now one of the most common chronic illnesses of our time • also one of the most misunderstood • research is shattering many misconceptions, showing CFS to be major public health problem
Chronic Fatigue Syndrome – what is it ? • 1988 US Ctre for Disease Control (CDC) formulated working defn that supported notion of CFS as single entity with single cause • Thus, term used for any unexplained, persistent fatigue from sleep disorders, nutritional deficiencies, stress etc • CDC defn no longer supported though it still taints perception of CFS
Prevalence ? • US prevalence rate for women with CFS is higher than it is for AIDS (12 women per 100,000), breast cancer (26 women per 100,000) and lung cancer (33 women per 100,000) • CFS not specific to any race, age, or SES group
Canadian & Other Stats • According to Statistics Canada, 341,126 Canadians have had a doctor diagnose them with Chronic Fatigue Syndrome [ 2003 study, released 2006] ~ called 10% phenomenon • Perspective re US stats: almost twice as common as multiple sclerosis & five times more common than AIDS • Estimate that $100 billion lost annually in N America due to CFS-related issues & complications & side effects
ME / CFS • Problem: what is fatigue, prolonged fatigue, chronic fatigue, & chronic fatigue syndrome ? • the Canadian Expert Consensus Panel has published a medical milestone, the first clinical case definition for the disease known as myalgic encephalomyelitis /chronic fatigue syndrome • ME more widely known as fibromyalgia
ME vs cfs • Myalgic encephalomyelitis (ME) is a more specific and appropriate diagnosis than CFS, as it describes a specific condition with muscle and neurological symptoms, not only the ubiquitous symptom of fatigue • More specifically, the fatigue in ME is exertion related (vs. "tired all the time"), with a significantly prolonged recovery time, and all symptoms can be magnified by levels of physical, cognitive, sensory or emotional stress that would have been of no consequence prior to the illness onset • Currently both names/descriptions may be used, or sometimes may be used interchangeably, which has led to a great deal of confusion • CFS is used more frequently in the US, while ME is still preferred by most of Europe, Canada, and Australia • Possible that all patients with ME have CFS but not everyone with CFS has ME
More on ME • Systemic disease but primarily central nervous system dysfunction • Often dysautonomia or abnormal functioning of the autonomic nervous system • Also associated with emotional, cognitive, & proprioceptive dysfuntion
Myalgic encephalomyelitis = CFS – Chronic Fatigue Syndrome • the new clinical case definition makes it compulsory that in order to be diagnosed with ME/CFS, a patient must become symptomatically ill after exercise and, • must also have neurological, neurocognitive, neuroendocrine, dysautonomic, and immune manifestations [symptoms other than fatigue must be present for a patient to meet the criteria ] • This case definition, which incorporates some of the current research on dysautonomia, cardiac, and immune problems, was published in the Journal of Chronic Fatigue Syndrome, Vol. 11 (1) 2003.
Key symptoms of CFS/ME include: • profound exhaustion • extreme joint/muscle pain and headaches • severe thinking and memory dysfunctions • a depressed immune system
It’s all in their minds! • there is substantial objective, well-documented evidence of central nervous system, (CNS), immune, endocrine, cardiovascular, and autonomic nervous system abnormalities which indicate that CFS is biologically, not psychologically, determined
It’s all in their minds! • The leading model of CFS pathogenesis is rooted in scientifically identified abnormalities in the brain (central nervous system) and the immune system, both of which affect and alter the function of the other
At least 4 of these key symptoms are concurrently present for 6 months or longer: • substantial impairment in short-term memory or concentration (attention deficit, memory lapses, frequently using the wrong word, spatial disorientation) • sore throat • extreme joint and muscle pain without swelling or redness • headaches of a new type, pattern or severity • Un-refreshing sleep (hypersomnia or insomnia, nightmares) • painful lymph nodes • post-exertional malaise lasting more than 24 hours
CFS Research • In broadly-defined CFS, the research is equivocal and confusing • there is some evidence for a persistent viral infection in a subgroup of patients, while in others, there are clear signs of immune system activation, muscle damage and other changes suggesting ongoing disease • presence of certain pathogens (bacteria, parasites) in the gut play a significant role in some CFS
Is there a psychological factor identified by research ? • research suggests that among broadly-defined populations, there is a subgroup whose ongoing fatigue may be the direct result of excessive inactivity and maladaptive (irrational, unrealistic) beliefs • Majority of CFS sufferers do not have psychological predisposition to CFS
Treatment/s • Depends on the subgroup: • patients with signs of ongoing infection have responded to the appropriate anti-viral or immunity-boosting drugs • where there is a lack of certain vitamins (D, B12) or food sensitivities, supplementation and dietary modification have had impressive results
Treatment/s • In the UK, researchers have found that lifestyle advice e.g. about expenditure of energy, diet etc. plus stress management and counseling, can significantly reduce disability and distress
Text re Treatment-Conventional: • Conventional or allopathic includes medical, social, psychological support • Conventional drug therapies [anti-depressants] work for some symptom relief; just as often, they produce other symptoms or reactions ex: NSAIDs create GI problems • Role of exercise is controversial and equivocal in effect
Text re Treatment-Integrative: • Limited research or practice here that comes down to decision-making, experience, individual considerations • Issue seems to be making sure there are options and being open • What forms? Massage, osteopathy, chiropractic are all prelim studies
Text re Treatment-Integrative: • Mind-body interventions such as relaxation, meditation ~ note the RCTs in this area ~ goal in these is to help patient live functionally, not cure CFS • One good RT study on +tive effect of homeopathic remedies • Others in text: dietary, herbal, acupuncture, Ayurveda • See the case study page 427 re text conclusions on CFS treatments
What about exercise ? • those who do not engage in 'excessive rest' or who tend to operate at their own activity ceilings should learn to pace themselves through the day • for people whose fatigue appears to be maintained by unhelpful beliefs and behaviours, cognitive-behaviour therapy (CBT) plus graded activity is the treatment of choice • Issue is not whether to exercise, but how much and when
New advice for CFS patients ~ ‘Pace & Switch’ • Pace in everday activities • Switch mental and/or physical activities before exhaustion • Commitment to rest • Relatively new coping mechanism that’s kind of an CFS interval training approach
What is needed ? • we need better criteria to separate the different fatigue syndromes – otherwise, inconsistent & confusing findings • doctors must begin to trust people with CFS ~ it has had some very bad press and is tarnished by prejudice ~ public needs greater awareness too
The name "Co-Cure" stands for "Cooperate and Communicate for a Cure." Our Focus: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) & Fibromyalgia
Cancers • Rogue cells that form lump or mass that is either benign (non-cancerous) or malignant (cancerous) • Named for body area of origin, ex. colon cancer; if it moves or metastasizes to liver, then colon cancer with liver metastases
Cancer complexity • Complexity of CFS is one type of complexity • Complexity of cancer as health issue is whole different matter • Consider real case decision on maternal cancer genetics . . .
Cdn Cancer Statistics • In 2005, 149,000 new cases of and 69,500 deaths from cancers • Lung cancer is leading cause of death from cancer, more than breast & prostate combined • 2nd leading is colorectal – new TV ads with bums with asterisk over rectal area [ ‘don’t die of embarrassment’ ]
Cdn Cancer Statistics • Incidence and mortality from all cancers & lung cancer hier in eastern, lower in western provs • Increased number of new cases due to aging population • 44% of new cases and 60% of deaths occur in 70+ age group • Cancer rates hier for females during reproductive years; males hier rates at all other stages of life
Probability Stats • 38% of Cdn women, 44% Cdn men will develop cancer • 1 out of every 4 Cdns will die from cancer • Lung cancer by far the leading cause of premature death (life years lost) • Some 1300 cases of cancer in kids; only 20% likely to die
Cancer Prevention – Modifiable Risk Factors ? • Tobacco use • Unhealthy eating • Excess body weight • Physical inactivity • Over-exposure to sun’s ultraviolet rays
Treatments ~ Conventional • Surgery • Chemotherapy • Radiation • Hormonal therapy • Biological therapy [ plus managing pain, managing side effects like destruction of healthy cells ], managing stress
Treatment & Canadian Cancer Society: • Seems to be very progressive, albeit cautiously in its inclusiveness of both allopathic and alternative treatment approaches • Directive and user-friendly, public approach to understanding clinical trials…
Treatment & Canadian Cancer Society: re conventional • “Conventional treatment for cancer, which usually consists of surgery, radiation therapy and/or chemotherapy aims to attack or remove the cancer” • “These methods have been scientifically tested, and are constantly being improved, in well-designed clinical trials”
Treatment & Canadian Cancer Society: re Alternative • Advocate that this is personal decision and should consider/know: ~ diffs betw conventional & CAM therapies ~ all the info you can get on CAM forms ~ consulting with healthcare team re use and interaction of CAM forms with conventional
Treatment & Canadian Cancer Society: re Alternative • Distinguish betw complementary re using, say meditation with conventional therapies to relieve pain etc • Vs alternative, meaning ‘instead of’ with such forms as massage, meditation, therapeutic touch, herbal remedies, special diets, new & un-tested treatment discoveries
Text & Integrative medicine • Focuses mainly on CAM modalities in cancer treatment re • Minimal evidence for nutrient or micronutrient (ex. Vitamins) products having any real impact • Palliation (alleviation) of symptoms show some support re use of acupuncture in reducing nausea/vomiting with chemo