Now there’s a “best practice” guide that explains why ME/CFS is NOT a psychiatric disorder, and then outlines how anxiety and depression can be assessed and treated in CFS patients. Available in English, it is currently being translated into three additional languages.

The Author
Eleanor Stein, MD, FRCP©, is a Canadian psychiatrist dedicated to the integrated treatment of patients with Chronic Fatigue Syndrome, Fibromyalgia, multiple chemical sensitivities, and toxic exposure – and a specialist in the diagnosis and treatment of co-existing anxiety and depression in CFS and FM.

Dr. Stein formed the first multidisciplinary team in her country to provide integrated medical, cognitive, and sensory assessments of CFS & FM patients. And recently, to support the world medical community in implementing an integrated approach to the care of ME/CFS patients, Dr. Stein wrote and made freely available for download a 29-page document titled Assessment and Treatment of Patients with ME/CFS: Clinical Guidelines for Psychiatrists.

What the Guidelines Cover
Dr. Stein’s heavily-sourced and experience-based CFS guide for psychiatrists explains explicitly what CFS is and is not. Then it proceeds to outline how medical professionals may assess and treat anxiety and/or depression in their CFS patients – in the context of an integrated approach to care. Specific sections include:

1. Definition of ME/CFS
2. Explanation of why ME/CFS is not a psychiatric disorder, even though a significant subgroup of patients have psychiatric diagnoses.

3. Steps in differentiating the symptoms of ME/CFS from those of depression and anxiety.

4. Suggested treatment approaches for common psychiatric symptoms in patients with ME/CFS.

5. Summary of psychological treatment issues in patients with ME/CFS.

6. Explanation of issues relevant to children and adolescents with ME/CFS.

7. Discussion of treatment issues regarding drug sensitivity and the utility of Cognitive Behavior Therapy and Graded Exercise in patients with ME/CFS.

Where to Find the Guide
The downloadable PDF file of Stein’s Guidelines for Psychiatrists
(http://www.fm-cfs.ca/Psychiatry-overview.pdf) is available at the site of FM-CFS Canada. Dr. Stein’s guide is the first to respond to this charitable organization’s invitation to “experts in many medical fields to develop free profession-specific guides based on the [Canadian] Consensus Protocols,” considered best practice in CFS diagnosis and treatment by many leading experts.

Myalgic Encephalomyelitis (ME) was first defined by Acheson in 1959 based on 14 docu­mented outbreaks in several countries and hundreds of sporadic cases of illness charac­terized by: headache, myalgia, paresis, mental symptoms, low or absent fever and no mortality (Acheson, 1959). This was in contrast to polio and other paralyzing conditions prevalent at the time. The disorder was later operationalized by Ramsay to include the triad of: muscle weakness and fatigability, CNS involvement and symptom fluctuation. In early reports, lability of emotions was an almost constant feature ranging from slight irri­tability to violent manifestations.

In 1988 after an outbreak at Incline Village Nevada, the CDC formed a committee that named the disorder “Chronic Fatigue Syndrome” and suggested criteria for a research definition (Holmes et a!, 1988). These criteria were found clinically problemat­ic and in 1994 the CDC revised their definition publishing what is commonly referred to as the “Fukuda criteria” (Fukuda et a!, 1994).

The 1994 definition requires fewer physical signs than the 1988 definition and therefore selects less severely ill patients (De Becker et a!, 2001). The Fukuda criteria require only one mandatory symptom: disabling fatigue of greater than 6 months duration. In addition there must be at least 4 of: impaired memory/concentration, sore throat, tender lymph nodes, muscle pain, multi-joint pain, new headache, unrefreshing sleep and post-exertional fatigue. This definition lacks specificity because common symptoms such as autonomic and endocrine symptoms were not included. The Fukuda criteria have also been criticized for not requiring muscle fatigability as mandatory. Muscle fatigue is necessary for the diagnosis of ME.

Cooperation between the National ME-FM Action Network of Canada and Health Canada resulted in the 2003 publication of what is referred to as the “Canadian Consensus Guidelines for ME/CFS” (Carruthers et a!, 2003). The Guidelines describe a clinical case definition, clinical evaluation, prognosis, occupational disability and treat­ment protocol for patients with ME/CFS. The full document may be viewed at: http://www.mefmaction.net/documents/journal.pdf.

2.2 Comorbidity
In the largest epidemiological study to date, it was shown by Jason and colleagues in Chicago that only 40% of the community CFS cohort had pure CFS (Jason et a!, 1999). 15.6% of the cohort also had Fibromyalgia Syndrome (FM), a disorder of chronic gener­alized muscle pain and joint stiffness with the presence on physical exam of at least 11/18 designated tender points. Forty-one percent had Multiple Chemical Sensitivity (MCS), a disorder defined as a chronic condition with symptoms that recur reproducibly in response to low levels of exposure to multiple unrelated chemicals.

The symptoms improve or resolve when the incitants are removed. The symptoms of ME/CFS occur in multiple organ systems and no other disorder can account for the symptoms (1999). The disabil­ity found in patients with ME/CFS is often aggravated by the comorbidity of ME/CFS with FM and MCS as well as other medical and psychiatric disorders if present. A full history must be taken to identify all of the symptoms which impact on function and health.

2.3 Prevalence
The prevalence of CFS in population based epidemiological studies using the Fukuda cri­teria is 0.24 - 0.42% (Reyes et a!, 2003) (Jason et a!, 1999). This means that in Canada there are approximately 125,000 people meeting the CDC criteria for CFS. Based on American estimates, the annual lost productivity is $20,000 per person. In Canada annu­al lost productivity is estimated at $2.5 billion (Reynolds et a!, 2004). This is a huge bur­den on the economy and suggests that more research funding should be directed towards understanding the prevention, diagnosis and management of ME/CFS.

Nevertheless, certain abnormalities are consistently reported.
These include: autonomic nervous system dysfunction using the objective measure of heart rate vari­ability (Cordero et a!, 1996) or tilt table testing (Rowe & Calkins, 1998). Several studies have shown deficiency in natural killer cell function (Whiteside & Friberg, 1998;Ogawa et a!, 1998) in ME/CFS. Studies of cytokine profiles have generally suggested a Th1 to Th2 shift. Th1 is the aspect of the immune system that controls intracellular infection.

An intriguing finding is that of increased levels of 37 kDa RNase L in patients with ME/CFS but not in healthy controls or patients with depression (Suhadolnik et a!, 2004;Suhadolnik et a!, 1994;2002). This is an abnormal variant of the enzyme normally produced by cells to kill RNA viruses. This variant is not found in healthy people and is not subject to the normal cellular control mechanisms. Further supporting relevance to clinical presentation is that 37 kDa Rnase L levels correlate with exercise capacity in patients with ME/CFS (Snell et a!, 2002).

Many intracellular infections have been shown to be more prevalent in ME/CFS compared with healthy controls. These include the Human Herpes viruses: EBV (Lerner et a!, 2004), CMV (Lerner et a!, 2004), HHV6 (Ablashi et a!, 2000) and HHV7. Other intra­cellular pathogens including: mycoplasma (Choppa et a!, 1998), chlamydia (Nicolson et a!, 2003) and coxiella (Wildman et a!, 2002) (Ayres et a!, 1998)have also consistently been found in high proportions.

Finding so many intracellular infections suggests that the infections are secondary to an immune dysfunction. Cognitive function (DeLuca et a!, 1997;Michiels et a!, 1999;Tiersky et a!, 2003), brain blood flow on SPECT (Ichise et a!, 1992;Costa et a!, 1995;Fischler et a!, 1996) and quantitative EEG are all abnormal (Flor­Henry et a!, 2003). Hormonal studies show hypo function at the level of the hypothala­mus. It has recently been suggested that this may be secondary to chronic illness rather than causative (Cleare, 2004). ...

6. Psychological Issues

6.1 Grief
Grief is a universal issue for people with ME/CFS.
The losses are numerous and individ­ual. People should be asked about how their lives have changed since becoming ill and be given a chance to describe the process of adjustment. Primary losses are of finan­cial independence, in some cases physical independence, role in family, role as a worker and bread winner, loss of support from family and friends who do not understand the illness and loss of self esteem from all of the above.

6.2 Coping
Patricia Fennell describes four phases of coping with chronic illness: Her model is used widely by therapists working with patients with ME/CFS. Fennell stresses that the four phases are not followed in linear fashion and that people move between phases and aspects of more than one phase may be evident at one time. Given the fluctuant nature of ME/CFS there are always new challenges and maintaining a “phase 4” position is not a realistic goal. The goal is to be flexible enough to adapt to the significant changes imposed by chronic illness with ME/CFS.

PHASE 1: CRISIS
This occurs whether onset is sudden or gradual. Crisis develops when one’s values, self concept, and life goals are called into question i.e. you are too sick to function as you used to. The action goal of phase one is to batten down the hatches, take stock of resources, adjust expenditure and try to minimize immediate pain. A tool of phase one is to begin a personal narrative. The spiritual goal of phase one is to learn to allow one’s suffering.

PHASE 2: STABILIZATION
One reaches phase two when one’s physical condition has stabilized somewhat due to the lifestyle changes one has made. However people in phase 2 continue to think they can function as they used to and continue to overestimate their personal resources. They have relapses as a result. The action goal of phase two is to focus on what one really needs. The tools of phase two are learning, restructuring and educating others. The spiritual goal of phase two is to learn to regard your suffering with compassion.

PHASE 3: RESOLUTION
The work of Phase 3 is grief work, the challenge to obtain insight and develop meaning in the face of huge losses. In phase three patients are becoming more self reliant and self trusting with regard to health decisions. Humor and play become possible again. The action goal of phase three is to stand for oneself without apology. The spiritual goal of phase three is to meet one’s suffering with respect.

PHASE 4: INTEGRATION
Becoming more than one’s illness frees up emotional energy for other meaningful tasks and interactions. One begins to connect the personal to the world view and embrace the mystery and unknown of life. The spiritual goal of phase four is to integrate your suffering into a whole life.

6.3 Empowerment
AS in all chronic medical conditions, long term health status for patients with ME/CFS depends upon patients learning to observe and trust their body’s reactions to psycho­logical and physical stressors, experiment to see what works best for them and then make changes accordingly. Self management is accepted as the most cost effective and successful approach to chronic illness (Lorig et al, 2000) and the Stanford model of self management is widely used.

From a psychotherapeutic perspective one can observe a change in emotional status when the patient has the moment of realization that that his/her opinions are as valid as anyone else’s, that s/he is not to blame for his/her dis­order and that s/he has value and rights despite being ill. From that point onwards patients cope better even if their physical condition or life circumstances do not improve.

6.4 Stress Management
One neuroendocrine manifestation of ME/CFS is “loss of adaptability and worsening of symptoms with stress”. This indicates that homeostatic failures occur among patients with ME/CFS. Small physical stressors such as walking up a flight of stairs or being in a cold room can cause exhaustion, pain and other symptoms. Psychological stressors such as interpersonal issues which were easily managed before becoming ill can feel monumental. In part this reaction may be due to the stress of altered lifestyle, occupa­tional, and financial circumstances over which the patient has little control and which may not be easily resolved. Many problems in life can be solved by more effort or more money and patients with ME/CFS cannot increase either sufficiently to manage ordinary stressors. The need for basic stress management skills becomes greater than for healthy people who have more reserve capacity.

1. Prioritize energy for solving problems that are solvable and put aside worries about things that cannot be changed.

2. Use written reminders for tasks and messages to avoid confusion and errors.

3. Listen to your body and pace activities according to the body’s feedback rather than a predetermined schedule or activity goal.

4. Plan rest days between appointments and visits if necessary

5. Enlist the support of friends and family when needs can be foreseen.

6. Believe in oneself and use self talk to get through hard times.

7. Note and address thought patterns which are counterproductive.

8.2 Utility of CBT/Graded Exercise in ME/CFS
Although Cognitive Behavior Therapy (CBT) is widely recommended for patients with ME/CFS, it is far from clear whether cognitive behavior therapy is helpful for most patients. ... It is important to note that no CBT study has reported that patients have been improved enough to return to work nor have they reported changes in the physical symp­toms of CFS eg. muscle pain, fever, lymphadenopathy, headache or orthostatic intoler­ance....

Self management is critical in the long term outcome for patients with ME/CFS and empowerment facilitates self management. Comorbid psychological symptoms such as depression and anxiety occur in ME/CFS and are often secondary to loss of health, financial means and role in society. When present, psychiatric symptoms should be treated similarly to any other patient while paying attention to the increased incidence of drug side effects in this population and decreased energy available for therapy. ...

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