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

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.

Founder’s Corner: Fair Name Campaign Update - Exciting New Direction
by Rich Carson, Founder
ImmuneSupport.com
05-19-2008

A number of you have asked about the status of the Fair Name Campaign, so I thought this first newsletter following Awareness Day would be a good time to give you an update. First, and most importantly, the patient community has jumped on board. Your feedback has been positive and encouraging.

Not surprisingly, the vast majority of patients favor adopting a new, fair name, as ‘Chronic Fatigue Syndrome’ is universally perceived as trivializing, dismissive, and thoroughly inaccurate. And, while there are a few people who have other preferences, most of you strongly support adopting the acronym ME/CFS.

Second, and equally as exciting, patient organizations and several in the medical community have also picked up the banner. As a result, we’re already starting to see ME/CFS appear more often. Some examples:

• In January 2007 the IACFS voted to change its name to IACFS/ME.
• The big conference being held in London on May 23 is called the International ME/CFS Conference.
• Researcher and clinician Dr. Charles Lapp has announced that all of their forthcoming research papers will use ME/CFS rather than Chronic Fatigue Syndrome.

When we began the Fair Name Campaign, our intention was to have a vote on whether or not to accept the Name Change Advisory Board’s recommendation of ME/CFS. However, since that time, the campaign has taken on a life of its own, as the use of ME/CFS in both the medical and patient communities is growing steadily. Therefore, we are shifting our focus, from a vote to implementation of the name that is increasingly being recognized and accepted - ME/CFS - and moving forward with the guidance of respected patient leaders.

A New Direction

Since the formation of the Name Change Advisory Board was first announced in January 2007, I have tried to make it clear that this effort has to be driven by patients, patient organizations and the medical community. Now several patient leaders have stepped up, are taking charge, and are pushing the campaign forward. Some of those leaders include:

Karen Lee Richards – co-founder of the NFA and patient expert on ChronicPainConnection.com;

Cort Johnson – founder and editor of the Web site Phoenix Rising, which serves the ME/CFS and FM communities;

Marly Silverman – founder of P.A.N.D.O.R.A, an organization supporting patients with neuroendocrineimmune disorders; and

Dorothy Wall – author of Encounters with the Invisible: Unseen Illness, Controversy and Chronic Fatigue Syndrome.

Just a few of the exciting new things you can look forward to include:

• A completely redesigned Website (to be launched in September) that will give you more in-depth information about the Fair Name Campaign, answers to your questions about the name change, and information about what you can do to help. The site will also be updated regularly, keeping you informed on all the latest news about the progress of the name-change effort.
• An accelerated pace, with a more comprehensive strategy for publicizing the importance of a fair name for patients.
• Celebrity endorsements featuring celebrities who are diagnosed with ME/CFS or who have family members suffering with ME/CFS.
• The several hundred patients who have volunteered to help with the campaign will be contacted over the summer with suggestions of things you can do to move the campaign forward.

Clearing Up the Confusion

The sole intent and purpose of the Fair Name Campaign is to give patients a respectable name for their illness. Studies have proven that patients diagnosed with Chronic Fatigue Syndrome are not taken as seriously as patients with the same symptoms but a different name for their diagnosis. The CFS name not only affects the quality of treatment patients receive, but it also affects the amount of money committed to research. It’s hard to convince those funding research to spend their money on people they think are just tired all the time. Patients deserve to be taken seriously, to have a name for their illness that preserves their dignity, and to receive appropriate medical care.

With this in mind, the committee of patient leaders has spent several months researching and considering each and every concern addressed to and about the Fair Name Campaign. The biggest debate regarding the name change seems to be whether the ME should stand for Myalgic Encephalopathy or Myalgic Encephalomyelitis.

To give you a little background, the Name Change Advisory Board - which was composed of eight leading ME/CFS researchers and clinicians - originally recommended ME/CFS, with the ME standing for Myalgic Encephalopathy. When a few patients strongly vocalized their objections to using encephalopathy, we attempted to compromise, saying the ME could stand for either Myalgic Encephalopathy or Myalgic Encephalomyelitis. In retrospect, that was not a good solution.

There are good, valid arguments on both sides of this issue. Each name has its pros and cons. But in the end, it was felt that we should abide by the recommendation of the Advisory Board – to use Myalgic Encephalopathy as the ME in the acronym ME/CFS. The board members felt strongly that Myalgic Encephalomyelitis should not be used because not every patient diagnosed with CFS had evidence of brain or spinal cord inflammation, which is a key component for a diagnosis of Myalgic Encephalomyelitis. Dr. Nancy Klimas, president of the IACFS/ME, stated that inflammation of the central nervous system is identifiable in 80% of patients, and therefore excludes 20% of patients who also have classic CFS symptoms.

Myalgic Encephalopathy, on the other hand, is a broader, more comprehensive term, and simply means a disorder of the brain. This includes the patients with inflammation, as well as the 20% of patients in whom inflammation cannot be identified. In a word, Myalgic Encephalopathy includes all bonafide CFS patients, whereas Myalgic Encephalomyelitis excludes 20% of these patients. Which category do you think you would fall into?

We want to emphasize the fact that we are in no way trying to minimize or change the name of Myalgic Encephalomyelitis. If anything, we hope this will demonstrate the severity of Myalgic Encephalomyelitis and allow it to stand on its own. If you have evidence of brain or spinal cord inflammation and have been diagnosed with Myalgic Encephalomyelitis, you still have Myalgic Encephalomyelitis. We don’t expect you to change the name of your illness to ME/CFS.

There is one other concern some have expressed about using Myalgic Encephalopathy that we would like to clear up. They are afraid ME/CFS patients will be lumped in with people who have mental disorders. We talked with several medical experts and they all assured us that Myalgic Encephalopathy refers to an organic brain disorder and in no way includes mental disorders. (For a more complete description of encephalopathy, please see the footnoted definitions below.)

Moving Forward

I’m excited about the new energy and enthusiasm that has been injected into the Fair Name Campaign and hope you will be, too. If you’d like to sign the petition or volunteer to help, or submit a comment or question, you can do so now on the Fair Name Campaign Web site (http://www.afairname.org/volunteer.cfm). Don’t forget to watch for the announcement of our improved Campaign Website in September.

Whatever you do, don’t allow yourself to be dismissed as someone who has “chronic fatigue.” We can right this wrong for ourselves, for our families, and for a medical community still in need of a fair, accurate name for a disease that causes immeasurable suffering.

Keep the faith,

Your supporter and advocate,
Rich Carson

Encephalopathy defined:

Source: Medline Medical Dictionary:
en-ceph-a-lop-a-thy: plural -thies:
a disease of the brain; especially one involving alterations of brain structure

Source: New Oxford American Dictionary
encephalopathy |en-sef-a-lop-a-thy|:
noun Medicine a disease in which the functioning of the brain is affected by some agent or condition (such as viral infection or toxins in the blood): pl. -thies

Source: Nature (extremely respected science publication; in business since 1869)
ENCEPHALOPATHY …condition of the brain that can be caused by infectious disease, metabolic abnormalities, brain tumors, toxic drug effects or increased intercranial pressure.

Source: www.virtualtrials.com/dictionary
A disease of the brain; especially: one involving alterations of brain structure.

Answer from Administrator: We recently combined the email list for the old group and new group. If you are receiving email notices twice please let us know.

Also, if you only wish to receive meeting notices and no information emails please advise also. Thank you

Article Entitled: Seven genomic subtypes of Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME): A detailed analysis of gene networks and clinical phenotypes – Source: Journal of Clinical Pathology, Dec 5, 2007 by Jonathan R Kerr, MD, PhD, et al. ImmuneSupport.com

12-07-2007

Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME) is a multi-system disease, the pathogenesis of which remains undetermined. We have recently reported a study of gene expression, which identified differential expression of 88 human genes in patients with CFS/ME.

Clustering of QPCR data from CFS/ME patients revealed 7 distinct subtypes with distinct differences in SF-36 scores, clinical phenotypes, and severity.

In this study, for each CFS/ME subtype, we determined those genes whose expression differed significantly from that of normal blood donors, and then determined gene interactions, disease associations, and molecular and cellular functions of those gene sets. Genomic analysis was then related to clinical data for each CFS/ME subtype.

Genomic analysis revealed some common (neurological, cancer, immunological, inflammatory, hematological) and some distinct (metabolic, endocrine, dermatological, cardiovascular, connective tissue) disease associations among the subtypes.

Subtypes 1, 2 and 7 were the most severe, and subtype 3 was the mildest.

Clinical features of each subtype were as follows:

· Subtype 1 (cognitive, musculoskeletal, sleep, anxiety / depression);

· Subtype 2 (musculoskeletal, pain, anxiety / depression);

· Subtype 3 (mild);

· Subtype 4 (cognitive);

· Subtype 5 (musculoskeletal, gastrointestinal);

· Subtype 6 (post-exertional);

· Subtype 7 (pain, infectious, musculoskeletal, sleep, neurological, gastrointestinal, Neuro-cognitive, anxiety / depression).

It is particularly interesting that in these genomically derived subtypes, there were distinct clinical syndromes and that those which were most severe were also those with anxiety / depression, as would be expected in a disease with a biological basis.

[Note: Dr. Kerr published another article in the same issue titled “Enterovirus infection of the stomach in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)”]

Source: Journal of Clinical Pathology. Dec 5, 2007. [E-pub ahead of print]. PMID: 18057078, by Kerr J, Burke B, Petty R, Gough J, Fear D, David M, Axford J, Dalgleish A, Nutt D. St George’s University of London; King’s College London; Sheffield Rheumatology Centre; University of Bristol, UK. [E-mail: jkerr@sgul.ac.uk]

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Article duplicated from the following website:

ProHealth, Inc.
Patient Owned, Dedicated to research.
Phone 805-564-3064
Fax 805-965-0042
http://www.ProHealth.com
“empower people to take control of their health
by providing comprehensive health resources,
current treatment information, quality health products
and advocating for the rights of the patient.”

Please go to the Grassroots Advocacy section of the CFIDS Association of America website:

http://www.cfids.org/advocacy/default.asp

To participate in their amazing Patient Advocacy program sign up and they will notify you of all current advocacy issues. You do not have to be a member to participate.

UNDERSTAND

One of the most difficult aspects of this condition is the lack of understanding experienced by PWCs. People think we’re malingering, or that they, too, experience these symptoms, or otherwise simply “don’t get it” no matter now well-intentioned they may be. By simply getting a basic understanding of what’s happening with your loved one or colleague, you can be a tremendous gift and support. Five minutes is all it takes.

• CFIDS Assn/CDD Spark! Campaign PSA (requires Windows Media Player)
• Sleepydust.net Chronic Fatigue Syndrome Video for Family & Friends

• Diplomat of Pain Management by American Academy of Pain Management (AAPM)

• Texas Licensed Acupuncturist (AC00477)

• Diplomat of Acupuncture by National Certification Commission for Acupuncture and Oriental Medicine (NCCAOM)

• Diplomat of Herbology by NCCAOM

• Associate Professor of Oriental Medicine teaching Acupuncture, Tai Chi and Qigong at the American College of Acupuncture and Oriental Medicine, Houston, Texas

• Instructor at Rice University in Continuing Education

• Acupuncture research at Baylor College of Medicine on knee arthritis

• 6th Generation Tai Chi-Qigong Disciple trained by Tai Chi master Jinghui Song & Ziyi Li since 1989

In the mid 1980s I planned to go to Western medical school because it made better sense to me, a modernized young Chinese man, with all its scientific-based information. But my father, a winery engineer, directed me to find a school which provided equal education in both Western medicine and Traditional Chinese Medicine - as he put it “Traditional Chinese Medicine has withstood three thousand years worth of tests and trials and has never been overridden, including the introduction of Western medicine to the Chinese people in 1820.”

In my first year of medical school, one of my roommates had a toothache in one of his wisdom teeth and we gave him ibuprofen (it was not an over the counter drug at the time in China) and he was very excited because it killed the pain right away. That was the first time I ever gave a drug to a patient! Then we found out he had to take the drug every 4 hours and increase the dosage gradually. The next day he stopped taking the drug because of the effects it had on his stomach. On his next visit, he received acupuncture treatment on his hand and applied herbal powder to his gums to stop the pain and clear the inflammation. The pain stopped after 3 days’ treatment and the patient was able to keep his wisdom tooth.

After 12 years of medical practice, my deepest appreciation goes to all the great Chinese and Western medical doctors who have bestowed their healing knowledge upon us.

Secondly, I thank my father whose initial advice led me to my pursuit and enjoyment of practicing integrative medicine. In the beginning of my medical practice, I used many more drugs due to their rapid effects. Not long after, I realized that traditional Chinese therapies would be my therapeutic priority for many of my patients after giving them a full and complete diagnosis based on my integrated knowledge of Traditional Chinese Medicine and Western medicine. The advantages of integrative medicine are obvious because it enables me to look at the patient from both perspectives and provide a wider range of treatment options, often avoiding unnecessary and hazardous actions by carefully selecting the safest and most effective approach to the patient’s problem from either system of medicine.

Finally, my appreciation goes to Tai Chi-Qigong Masters Jinhui Song, Ziyi Li, and Mogen Lin. With distinct honor I became a sixth generation Tai Chi disciple and received Master-to-Disciple training since 1989. Such training enlightens me to heal a person physically and mentally with energy medicine.