Houston CFIDS Association

Submmited by Opal for Houston CFIDS Members.

There are several reputable places, though some are harder to get to work for than others.† A lot of these have fairly stringent computer guide lines, and some require you to have a high speed connection, and a land line (no cell phones, or voice over IP, or cable phone service), but these are all reputable, I know people that work for them. If you know of any others please notify Jane at info@houstoncfids.org

Here is a list that I got from some of my stay at home mom friends:

www.workathomeagents.com – this is with West, they are based in San Antonio;

www.workingsol.com www.liveops.com – it apparently takes a bit of time to get to work with them;

www.alpineaccess.com/external/index.html  – Alpine Access – I applied and was not hired, I think because of my time out of the work force, but I don’t know for sure;

www.voicelog.com / – Voicelog they have some work at home positions;

www.verafast.net / – home based verifiers;

www.4.1800flowers.com/template.do?id=template8&page=9000 ww4.1800flowers.com – I hear they do hire people that work from home, though I also hear they have a waiting list;

www.newsstand.com / -  I hear they pay well this is proof reading.

A Realistic Approach to Exercise for CFS Patients

By J. Mark VanNess, PhD,
Christopher R. Snell, PhD,
and Staci R. Stevens, MA

Drs. VanNess and Snell are professors with the Department of Sport Sciences at the University of the Pacific. Ms. Stevens is an exercise physiologist and chair of the Workwell Foundation, an organization specializing in helping people cope with chronic illness.

Since chronic fatigue syndrome (CFS) is characterized by debilitating malaise and the inability to perform physical activity, it is often assumed that patients should begin an exercise training regimen to increase their ability to function. However, the ability to generate energy through aerobic energy pathways appears to be dramatically impaired in CFS patients and post-exertional malaise can extend for days. Because of this, aerobic-type exercise may be inadvisable for the CFS patient.

This presents something of a problem, as the patient’s inability to exercise leads to further deconditioning. Practitioners are often contradictory concerning exercise for persons with CFS: some recommend aerobic exercise in an effort to recondition the patient, while others decry any physical activity because of the negative impact on their patients. This raises questions concerning the etiology of what is essentially a cycle of deconditioning for CFS patients and what, if anything, can be done to reverse the worsening of symptoms many patients have when they exercise.

There are a number of theories on why CFS patients are unable to perform even the simplest of tasks without becoming fatigued. Several studies indicate moderately reduced oxidative capacity in CFS patients, which may provide an important clue to the origins of this fatigue.¹

Our own research has shown significantly lower exercise duration and peak oxygen consumption in a subset of CFS patients positive for the RNase L enzyme compared to CFS patients negative for the enzyme.² Presence of the RNase L enzyme is believed to be connected to an immune system dysfunction that may interrupt energy production, reducing aerobic work capacity.³

Any reduction in aerobic work function due to impaired oxidative function may lead to an abnormal reliance on anaerobic energy pathways during exercise. Therefore, what may be an aerobic exercise regimen for healthy individuals could actually be an anaerobic activity for CFS patients.⁴

Even activities of daily living, like vacuuming, may exceed the limited aerobic capacity of CFS patients. The rapid onset of fatigue and extended recovery time following physical activity may be explained as an expected reaction to intense anaerobic activity.

Our research shows significantly impaired oxygen consumption levels (according to AMA guidelines) in persons with CFS during treadmill exercise tests. Although the subjects’ volume of inspired air during exercise is normal, the oxygen they were able to use from that air was diminished.5 these findings suggest that exercise testing could be used to both diagnose and assess the level of disability in CFS patients.

A possible solution to this problem may be to prescribe exercise for CFS patients with the acknowledgment that performance will rely heavily on anaerobic metabolism. This means avoiding extended periods of aerobic activity and alternating short periods of resistance exercise or stretching with frequent rest breaks.

Therapeutic exercise designed from this perspective aims to increase strength and improve flexibility rather than reconditioning the aerobic system. Such a program would have the added goal of reducing muscle pain, improving cognition, and providing a sense of accomplishment and well-being.

If exercise is to prove beneficial for CFS patients, it is important that the exercise prescription is one they can accomplish. This means starting slowly, gradually increasing the intensity, and most important, allowing adequate time for recovery between sessions. The following guidelines are intended as general recommendations for CFS patients without other health conditions. It is advisable for patients to perform these exercises under the guidance of a qualified physical therapist or exercise physiologist sensitive to the needs of patients with CFS.

Clinical guidelines

Appropriate exercise for CFS patients is exercise that they recover from. Therefore, the main goal of the program is not to develop aerobic exercise capacity, but rather to increase the patient’s ability to utilize anaerobic energy systems and then to recover in a reasonable length of time.

It is also important that exercise programs be developed based on CFS patients’ present abilities, not on what they were able to do prior to having the disease. Range of motion exercises, such as lying hamstring stretch, lateral bends, and lower back stretchers, can improve flexibility, decrease joint pain, and enhance overall functioning. Light resist-ance exercises, such as modified push-ups, step-ups, and flex-knee crunches, can help to maintain and build strength.

Each exercise session should be comprised of very brief periods of activity (30 seconds or less) followed by at least 1 minute of rest or until complete recovery is achieved. Total periods of activity in a single session should not exceed 20 minutes.

A guiding principle to any exercise regimen is the necessity of allowing adequate time for recovery so that anaerobic metabolites, such as lactic acid, are removed to facilitate further exercise. If excessive fatigue ensues, decrease the number of exercises or their duration.

Determining whether a CFS patient has benefited from exercise requires a different assessment approach than with individuals suffering from other illnesses. A return to pre-morbid fitness levels may not be possible for CFS patients, but improvement is possible. Practitioners, therefore, should have a clear picture of a patient’s pre-exercise condition (not pre-morbid condition) and compare it to post-exercise accomplishments, such as whether patients can now independently perform tasks like vacuuming, doing the laundry, washing the dishes, etc., on a daily basis, with shorter rest periods and without relapse, may be just as important as counting how many times they can perform a particular exercise or assessing their cardiovascular condition.

References

1. McCully K et al. Impaired oxygen delivery to muscle in chronic fatigue syndrome. Clin Science. 1999; 97: 603-608.
2. Snell CR et al. Comparison of maximal oxygen consumption and RNase-L enzyme in patients with chronic fatigue syndrome. JCFS. (In press.)
3. DeMeirlier K et al. A 37kDA 2-5A binding protein as a potential biochemical marker for chronic fatigue syndrome. Am J Med. 2000:108: 99-105.
4. Clapp L et al. Acute effects of thirty minutes of light-intensity, intermittent exercise on patients with chronic fatigue syndrome. Phys Therapy. 1999; 79(8):749-756.
5. VanNess J M et al. Exercise testing in patients with chronic fatigue syndrome (CFS)—Diagnostic tool? Fed Amer Soc for Exp Bio J. 2000;14(4): LB41.

Using the mobility scooters at large stores is a great way to not expend energy needlessly. Let’s face it all CFIDS PWC’s need more energy. If you want to have a more “normal life” use them. Every little way you save energy is really a way to expend energy on things you love to do.

Provided by MaryMargaret:

If you are having trouble with your current employer with regard to work and job accommodation CFIDS is considered a “hidden disability”:

CFIDS
http://www.jan.wvu.edu/media/cfsy.htm

Cognitive Impairment
http://www.jan.wvu.edu/media/cogn.htm

Chemical Sensitivity / Environmental Illness
http://www.jan.wvu.edu/media/chem.htm

Fibromyalgia
http://www.jan.wvu.edu/media/fibr.htm

Alphabetical List of All Disorders / Disabilities
http://www.jan.wvu.edu/media/atoz.htm

ILRU (Independent Living Research Utilization)
http://www.ilru.org/

FMAH’s movement video, Strength in Movement, is simple and easy to follow.

Houston CFIDS Association does not endorse products or services but felt the video, featuring real Fibromyalgia patients, might also be appropriate for CFIDS PWC’s.

It focuses on increasing flexibility and relaxation while reducing stress.  For more details about Strength in Movement please visit the Fibromyalgia Association of Houston web site.

It’s now common knowledge that clutter is troublesome – the stress of misplaced papers, the visual noise, etc., humbles even the healthiest of people.  For us, it can become an all-out energy-zapper!  Keeping one’s environment clutter-free can go a long way toward peace and manageablity.

Heads-up!  Getting rid of clutter is the topic of one of our upcoming monthly meetings, and we’ll have a professional there to speak about it.  Be sure to check the Calendar regularly for details!

Let’s face it: while we may have been dynamos before this condition, we simply cannot do all the things we used to do.  So don’t even try! 

It’s not fair to ourselves to push like that, and getting some backup for the basics frees us up to heal and stay in the stream of life.  It also frees up energy to help others with areas in which we’re strong. 

What has worked for you?  Email us – we’d all love to hear it!

It’s well-known that one of the most frustrating things about our condition is the fact the we generally appear to be fine – though we and anyone who knows us are well aware that this is far from the truth.  It can help to have a couple of phrases in one’s pocket to help convey to others how what we really experience, what’s really going on.   Do you have some that work?  Email us – we’d all love to hear it!

General

• “Its like have the flu 24/7/365” or “Its like having the flu all day every day all year” – Jane

Brain Fog

• It’s like you feel when you’re waking up from anesthesia.”  – Mary

Fatigue

• “It’s neurological, on the continuum of paralysis as opposed to ‘being tired.’” – Lisa

Our condition often has a “mind of its own” when it comes to being able to plan our calendar and activities.  Here are some ideas and suggestions for staying engaged without adding any pressure.  Have anything that’s worked for you?  Email us – we’d all love to hear it!

• Write “committed” or “tentative” on my calendar then stay in bed or rest at home a day or two before the commitment. I have told everyone I know and everyone I meet whether it is committed or tentative when they ask (other than doctors they are always committed). That way if I have to cancel no one gets offended.

- Jane

• I keep close track of my energy levels on a daily basis.  This gives me an idea as to what time(s) of day I’m likely to be at my best, so I can schedule activites during those periods (and block out times when I know I’m likely to be “down”!).

- Lisa