Houston CFIDS Association

resource is ProHealth’s Newsletter which can be found at www.ImmuneSupport.com

05-14-2008

There’s a lot of risk for potentially harmful supplement/drug/herb interactions among ME/CFS and FM patients. For example, according to surveys in ProHealth’s newsletters:

• 70% of respondents take four or more nutritional supplements regularly
• 50% take four or more prescription drugs for ME/CFS and FM symptoms
• 53% of respondents’ doctors don’t ask about what supplements they’re taking
• 35% of patients don’t tell their doctors about all the supplements they take.

So ProHealth has compiled the following list of online databases that you can use to do your own detective work. Once you do, you’ll quickly realize how important it can be to keep your professional healthcare team fully informed about what you’re taking, and to explicitly ask them for their insights and advice.

Also, it’s important to recognize that though an interaction may not be noted in these databases, that’s no guarantee. Every person reacts differently to medications and supplements, and should always consult with their physician or pharmacist before starting any new protocol if they are on prescription meds.

RESOURCES FOR CHECKING DRUG & SUPPLEMENT INTERACTIONS

1. The Drug Digest Site - The Most Complete Searchable Database Found http://www.drugdigest.org/DD/Interaction/ChooseDrugs/1,4109,,00.html

Includes interactions with drugs, herbs, alcohol and food. This database covers some 5,000 drugs and herbs, and 11,500 potential interactions based on reports in the literature. The search process is simple once you walk through these steps:

• In the Drug box, type the first drug or herb you want to search on (for example, “aspirin”) & click Search.
• This highlights “aspirin” in the Search Results box.
• Then click the >> tab to enter “aspirin” in the Interaction List box.
• Repeat the process for each additional drug or herb you want in your Interaction List
• Then click Check Interactions.

2. National Institutes of Health Dietary Supplement Fact Sheets
http://dietary-supplements.info.nih.gov/Health_Information/Information_About_Individual_Dietary_Supplements.aspx

Includes a great deal of information on each listed supplement, including footnoted summaries of any known issues and controversies, side effects and cautions about the supplement, and tables listing known interactions (if any) with different types of medications.

3. Drug Interaction Checker at Drugs.com - Covers Drugs and Supplements
http://www.drugs.com/drug_interactions.html

Even if no known interactions exist between the drugs and supplements you select, the easy-to-search database will give you a list of other drugs that might interact with each, if you want to check. You’ll also be informed of any known interactions between your selected drugs/supplements and foods.

4. SubScribeRX Drug Interaction Checker – Covers Drugs and Supplements
http://www.subscriberx.com/iqhealth/searchdrug.html

The SubScribeRX database is compiled by Cerner Multum. You can search on multiple supplements/drugs to identify major, moderate, or minor interactions, including interactions with foods. Or search on just one product to identify the interactions that are possible. Site also offers drug information and leaflets in English and Spanish.

5. HolisticOnline.com – Medicine, Herb, Food Interactions
http://holisticonline.com/herbal-med/hol_herb_med_reac.htm

A website with general information about drug, herb & food interactions – under the heading “Herbs and foods may lead to complications if you take them with drugs.” There’s no search option available for specific personalized interaction searches.

6. HerbMed^R – Database of Journal Abstracts on Most Botanical Medicines
http://www.herbmed.org

Offers an extensive alphabetized search menu of herbal medicines, usefully providing both the scientific name and common name of each. Offers PubMed abstracts covering evidence for efficacy and activity as well as interactions & other safety data. However, many herbs listed in the menu are marked with an asterisk (*) – meaning they can only be searched in the Professional Version of the database, available by subscription or license.

___
Note: This information has not been evaluated by the FDA. It is generic and is not meant to prevent, diagnose, treat or cure any disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team

cfidslisalist-book-list.txtcfidslisalist-book-list.txt

published from Vermont CFIDS Association approval www.monkeyswithwings.com

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.

Patients with Chronic Fatigue Syndrome (PWC’s) have a choice to make the moment they are diagnosed. Do I give up and go to bed or do I fight? The choice is yours and yours alone but I say fight! Fight the illness! Fight the misunderstanding! Fight the medical community!

Become an advocate informing everyone you know or meet about the illnesses parameters and how it affects your daily existence. Help others understand the debilitating nature of the illness through access to both CFIDS of America’s and Houston CFIDS Associations websites. Above all, keep faith in yourself and your ability to survive.

Information is your best defense from discrimination in your life and with medical professionals.

Remember our national slogan: Get Informed, Get Diagnosed, Get Help!

Many CFIDS/CFS/ME patients suffer from Chemical Sensitivity. MaryMargaret recommends the following sites:

Environmental Health Center - Dallas (Doctor Rea)
http://www.ehcd.com/

The American Environmental Health Foundation - Dallas (Doctor Rea)
http://www.aehf.com/

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.

MaryMargaret, Houston CFIDS Member and OASIS Consultant (see “Speaker” information), contributed this piece in response to another member’s difficulty at work.

******************************************************

The criteria for determining disability for the Social Security Disability Insurance (SSDI) is different from that used to determine disability for the purpose of job accommodations under the Americans With Disabilities Act (ADA).

A person may qualify under the ADA for job accommodations but still not receive SSDI. For example, many people in wheelchairs or who are blind or deaf work rather than receive SSDI, and do require job accommodations.

Applying for SSDI

When applying for SSDI, it is imperative to have an attorney’s assistance. There is no charge for the service until the case is won. Law limits how much the attorney can collect from you after the case is won. You will also need a credible doctor(s) and possibly other professionals on your team.

Requesting Job Accommodations Under the ADA

When requesting job accommodations, it is imperative to utilize organizations such as those listed below. You usually need just one of these organizations unless they advise you otherwise. This advocacy organization won’t charge you any money and becomes a part of your team of professionals who assist you in acquiring job accommodations. You will also need a credible doctor(s) and possibly other professionals on your team.

• Advocacy, Inc.
• ILRU
• Houston Center for Independent Living (HCIL)
• Equal Employment Opportunity Commission (EEOC)

A Word of Advice

It is best to bring your boss and coworkers along with you rather than establish an oppositional stance with them. This may seem obvious, but can be more difficult than it sounds, especially with hidden disabilities that they may not understand.

Even within the world of disability advocacy itself, sometimes you may encounter built-in prejudices against people with hidden disabilities on the part of people with visible disabilities. Do your best to keep all these people on your side of the table.

Having advocacy organizations trained in how to present the information to your employer in a non-alienating manner is vital to your ultimate success. You always want to be seen as a valuable employee that people want around who just happens to have a disability.

CFIDS and related conditions can put us in a place where what we show is our frustration or anger. We must work against that. Counseling is very helpful as a place to vent and discuss your frustrations; it may even very likely save you your job.

MaryMargaret Lytle

Houston, Texas
October 2007

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/

CFIDS/CFS/ME is an illness of misnomers. Even the name is undecided. When you state you have an illness called Chronic Fatigue Syndrome its immediately misunderstood.

Here’s an easy way to override the confusing nature of the illness:

“I have an illness called Chronic Fatigue Syndrome. Have you heard of it? Its like having the flu and waking up from anesthesia at the same time, 24/7/365. CFS is a debilitating, life-altering disease. If you would like to know more check out our association website at www.houstoncfids.org”

Until I see you all again remember “life may have its ups and downs with dreams on either side so take each day and live it well and just enjoy the ride”Jane Mostowitz, President

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.