Tag: disability

Functional capacity evaluations of persons with chronic fatigue immune dysfunction syndrome

Abstract:

Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) is estimated to affect 2 to 5 million people in the United States. Despite its high incidence, persons with CFIDS have been neglected by the medical community mainly because there is no singular confirming diagnostic test or proven effective treatment.

The CFIDS population is incorrectly stereotyped as upper-middle-class, white, female hypochondriacs; consequently, symptoms often are belittled or ignored. In reality, CFIDS is a severe medical condition that affects women, men, and children of any race and often causes long-term or total disability.

The results of a modified functional capacity evaluation developed by the author and completed on 86 persons with CFIDS between 1988 and 1990 confirm that this population has severe physical and cognitive disabilities that affect their professional, familial, and social lives. The results of these evaluations are used to present a profile of persons with CFIDS that can serve as a basis for understanding this population and for guiding intervention.

 

Source: Barrows DM. Functional capacity evaluations of persons with chronic fatigue immune dysfunction syndrome. Am J Occup Ther. 1995 Apr;49(4):327-37. http://www.ncbi.nlm.nih.gov/pubmed/7785715

 

Self help organization’s advice on myalgic encephalomyelitis

Comment on: Outcome in the chronic fatigue syndrome. [BMJ. 1992]

 

EDITOR,-I should like to assure Simon Wessely that neither the ME Association nor ME Action regards Michael Sharpe and colleagues’ findings in patients with chronic fatigue’ as another attack on its credibility. Nor do we see why the paper should “further sour relations between the organisations and the profession.”

As Wessely points out, the apparent relation between functional impairment and membership of a self help organisation at follow up does not mean that membership of such an organisation is responsible for the impairment. Aside from the fact that the study did not focus on myalgic encephalomyelitis, or on the work the ME Association does, Sharpe reassured us that there was no evidence of a causal relation between membership of a patient group and level of disability.

As regards the potential damage resulting from inaccurate information about myalgic encephalomyelitis, it is worth emphasising that the quote that illustrates this came from Nursing Standard and not from a magazine for patients. The British organisations have long been unhappy with the way the media have portrayed the illness and reviewed existing research, and it is often extremely difficult to get erroneous or biased information corrected. Sometimes we get a right of reply, but usually we don’t.

Finally, I wish to make clear that our current advice on exercise and stress is based on sound scientific research, the recommendations of our medical advisers, and 50 years’ experience. Since our aim is to help patients it would be ridiculous for us to ignore good research and to stick instead to outdated explanations, speculation, or even prejudice. No one gains from such a narrow minded approach, least of all us.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1883373/pdf/bmj00091-0063a.pdf

 

Source: Hume MC. Self help organization’s advice on myalgic encephalomyelitis. BMJ. 1992 Sep 12;305(6854):649. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1883373/

 

Outcome in the chronic fatigue syndrome

Comment in: Self help organization’s advice on myalgic encephalomyelitis. [BMJ. 1992]

Comment on: Follow up of patients presenting with fatigue to an infectious diseases clinic. [BMJ. 1992]

 

EDITOR,-Michael Sharpe and colleagues’ paper confirms what many clinicians have long suspected -namely, that the prognosis for those with a chronic fatigue syndrome who reach specialist care is poor.’ The paper also suggests that membership of a self help organisation is associated with a poor outcome. Although the authors emphasise that this association is not necessarily causal, I fear that the self help organisations may interpret this as another attack on their credibility, which will further sour relations between the organisations and the profession.

What are the possible explanations for these disturbing findings? Sharpe and colleagues suggest that patients’ beliefs are an important mediator of disability, a view I share.2 An article written by a sufferer illustrates how this might happen: “These living viruses are erratic and unpredictable. The prickly-edged ones pierce their way into the body cells. If disturbed by the patient’s activity they become as aggressive as a disturbed wasps’ nest, and can be felt giving needle-like jabs (or stimulating the nerves to do so).” It is easy to understand how such beliefs, regardless of their scientific accuracy, amplify disability.

You can read the full comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1882994/pdf/bmj00086-0047b.pdf

 

Source: Wessely S. Outcome in the chronic fatigue syndrome. BMJ. 1992 Aug 8;305(6849):365. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1882994/

 

Outcome in the chronic fatigue syndrome

Comment on: Follow up of patients presenting with fatigue to an infectious diseases clinic. [BMJ. 1992]

 

EDITOR,-Michael Sharpe and colleagues report that most patients with the chronic fatigue syndrome rate contact with medical services as unhelpful or only slightly helpful. Many sufferers turn to alternative health care, again with varied success. Such dissatisfaction with medical care is well documented, and self help organisations flourish to provide the support, advice, and education that is not, or cannot be, provided by the medical profession; they potentially fulfil an important role.

The authors conclude that for patients with the chronic fatigue syndrome membership of a self help organisation is associated with a poorer outcome (although whether members were more functionally impaired at the outset is not known). Adopting coping strategies, particularly with regard to exercise and “stress,” and a belief in the persistence of a viral infection are also associated with continuing disability.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1883006/pdf/bmj00086-0047d.pdf

 

Source: Cope H, David AS. Outcome in the chronic fatigue syndrome. BMJ. 1992 Aug 8;305(6849):365. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1883006/

 

Pain syndromes, disability, and chronic disease in childhood

Abstract:

Childhood disability and chronic disease are common, and their prevalence is increasing as children survive with conditions that were previously fatal. It is important that physicians in training learn about disability and handicap, and the functioning of multidisciplinary teams to manage these problems. Chronic ill-health is often very expensive to manage, and some serious and creative thinking about the best way to fund such health care is urgently needed.

Pediatric rheumatologists are involved with the care of many children with chronic and recurrent musculoskeletal pain; however, they have not perhaps focused enough research effort on the investigation of pain and its management. Whether reflex neurovascular dystrophy, fibromyalgia, and chronic fatigue syndrome are part of a disease continuum is unclear, but it seems probable that psychosocial problems are often important contributing factors in all three conditions.

Immunoglobulin subclass deficiencies are being increasingly delineated, occurring in chronic fatigue syndrome as well as many other disease states. Their clinical relevance still remains, for the most part, uncertain. Short stature occurs in many chronic illnesses, and the role of growth hormone treatment in these conditions is beginning to be investigated.

 

Source: Malleson PN. Pain syndromes, disability, and chronic disease in childhood. Curr Opin Rheumatol. 1991 Oct;3(5):860-6. http://www.ncbi.nlm.nih.gov/pubmed/1836344