Helpful Information From The CDC For Family, Friends, And Physicians, Of Patients With Chronic Fatigue Syndrome

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Helpful Information From The CDC For Family, Friends, And Physicians, Of Patients With Chronic Fatigue Syndrome.

If you have Chronic Fatigue Syndrome or FM, you may find yourself in many situations where family, friends, and even health care professionals don’t understand the complexity of your condition. I recommend you go to this TOOL-KIT FOR HEALTH CARE PROFESSIONALS and print out the information. This is information on Chronic Fatigue Syndrome that is written by doctors, for doctors, and is put out by the CDC. Not only is this information good to pass on to your “less informed” doctors, but it is also written in a way that can be understood by non-medical professionals as well; making it good for helping family and friends understand the severity of your (seemingly benign) illness.

Here are a few excerpts from this 12 page pdf file……………

WHAT IS CFS?

Chronic fatigue syndrome is an illness characterized by
profound, debilitating fatigue lasting at least six months that
results in substantial reduction in occupational, personal, social
or educational activities. The fatigue is not improved by rest,
may be worsened by physical or mental activities and is
accompanied by characteristic symptoms. These symptoms
include problems with memory and concentration, unrefreshing
sleep, muscle and joint pain, headaches, tender cervical or
axillary lymph nodes, recurrent sore throat and an increase in
fatigue and in patient-specific symptoms persisting longer than
24 hours following mental or physical exertion.

The clinical course and symptom severity of CFS varies
considerably among the patient population. There is frequently
an intermittent pattern of relapse and remission. The illness
is marked by a dramatic decline in activity level and stamina.
People with CFS perform at a significantly lower level of
activity than they were capable of prior to the onset of
the illness.

CFS can be debilitating. By definition, all CFS patients are
functionally impaired. While symptom severity varies from
patient to patient, CDC studies show that CFS can be as
disabling as multiple sclerosis, lupus, rheumatoid arthritis,
heart disease, end-stage renal disease, chronic obstructive
pulmonary disease (COPD) and similar chronic conditions.

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DIAGNOSING CFS

To be diagnosed with CFS, patients must experience significant
reduction in their previous ability to perform one or more
aspects of daily life (work, household, recreation or school).

And by definition, all people suffering from CFS experience
severe, all-encompassing mental and physical fatigue that is not
relieved by rest and that has lasted longer than six months.
The fatigue is accompanied by characteristic symptoms that
may be more bothersome to the patients than the fatigue itself.

Clinicians should consider a diagnosis of CFS if these two
criteria are met:

1. Unexplained, persistent fatigue that is not due to ongoing
exertion, is not substantially relieved by rest, is of new onset
(not lifelong) and results in a significant reduction in previous
levels of activity.

2. Four or more of the following symptoms are present for six
months or more:

◆ Impaired memory or concentration
◆ Postexertional malaise (extreme, prolonged exhaustion
and exacerbation of symptoms following physical or
mental exertion)
◆ Unrefreshing sleep
◆ Muscle pain
◆ Multijoint pain without swelling or redness
◆ Headaches of a new type or severity
◆ Sore throat that is frequent or recurring
◆ Tender cervical or axillary lymph nodes

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Validating the illness experience.

Because CFS is an “invisible illness,” patients often do not look sick.

Public misconceptions about CFS being “all in your head” contribute
to a social context that leaves many patients feeling
misunderstood and isolated as they routinely face skepticism
from others. Having to confront negative responses to their
illness is a source of considerable anxiety for many patients.

Be particularly conscious of your attitude, and provide a
supportive environment where patients can safely discuss their
illness. Treating patients with respect and validating their illness
may be the single-most important therapy you can provide.

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A DIFFERENT DEFINITION OF EXERCISE

Advising patients who have chronic fatigue syndrome to engage
in aerobic exercise and “go for the burn” or “release those
endorphins” can be detrimental. Most CFS patients cannot
tolerate traditional exercise routines aimed at optimizing
aerobic capacity. Instead of helping patients, such vigorous
exercise can cause postexertional malaise, a hallmark of CFS
that is defined as exacerbation of fatigue and other symptoms
following physical or mental exertion. Even worse, this kind of
exercise can precipitate a full-scale relapse that lasts for days
or weeks.

A different way of defining exercise and managing activity is
needed for CFS patients and their health care team.

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ALTERNATIVE THERAPIES

Alternative therapies are often explored by CFS patients,
particularly when traditional drug treatments do not provide
enough symptom relief.

◆ Encourage patients to discuss such options with you to
make sure they are safe and effective.
◆ Remain open-minded about alternative therapies. For
example, many clinicians report that hydrotherapy
simultaneously provides exercise, improves balance, treats
orthostatic instability and reduces CFS pain.
◆ Consider referring patients to an acupuncturist. This
treatment is often prescribed for chronic headaches, pain and
decreased energy. Finding a certified practitioner who is
knowledgeable about CFS is best.
◆ Consider other alternative therapies. Gentle massage,
meditation, deep breathing, relaxation therapy and
biofeedback have helped some patients. Movement therapies
like stretching, physical therapy, yoga and tai chi may be
effective for CFS patients who can tolerate more activity.

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This is just some of the information you can find in the 12 page tool-kit.

You can find this link as well as several others, at the page on this site called FOR YOUR DOCTOR.

TIPS FOR LIVING WITH CHRONIC FATIGUE SYNDROME

ALSO SEE THIS 7 MINUTE VIDEO CLIP:

THE CFS 2006 AWARENESS CAMPAIGN BY THE CDC

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The inability of a doctor to correctly diagnose a multisystemic disease is evidence of a deficiency of the doctor rather than a patient’s lack of cooperation.

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