FDA Recommends Against Drug to Treat Chronic Fatigue Syndrome

December 24, 2012 (HealthDay News) A U.S. Food and Drug Administration advisory committee on Thursday recommended against approval of the first proposed drug to treat chronic fatigue syndrome (CFS), intravenous Ampligen (rintatolimid).

Noting that the FDA denied approval for Ampligen in November 2009 due to methodological concerns, an advisory panel of the FDA reviewed a new analysis of one of the trials submitted in 2009. In Thursday's 8-to-5 vote, the advisory panel said the company hadn't provided enough data to support the approval of Ampligen. Although the FDA isn't bound to follow the recommendations of its advisory committees, it usually does so.

Ampligen, an immunomodulatory double stranded RNA drug developed by Hemispherx Biopharma in Philadelphia, PA, has been shown to help a subset of patients with CFS by reducing symptoms. The drug needs to be infused twice a week and is expensive, with a manufacturing cost of about $1,000 per patient per month. Largely positive anecdotal reports were presented in a teleconference conducted by the FDA with individuals with CFS who had used the drug.

"Patients with severely debilitating CFS suffer for years, both physically and cognitively, with little to no quality of life," write the authors of the Arthritis Advisory Committee Meeting briefing document. "The impact is felt by their families and our nation as a medical/social consequence. The current standard of care is palliative and provides little to no permanent relief."

More information: http://www.empr.com/fda-recommends-against-drug-to-treat-chronic-fatigue-syndrome/article/273785/#

Coping Tip: How to Mitigate Post-Holiday Crash

The holidays are a busy time. Families and friends get together, good food is shared, gifts are exchanged. There is shopping to be done, special meals to be planned, wrapping presents, decorating the tree …

Just reading that list is exhausting.

The fact is that whenever there is an expenditure of energy – and this goes for anyone – the inevitable consequence is the post-event letdown. For people with CFS and ME, who don't have the ability to recuperate easily, the result is a crash – a period in which the exhaustion is total. All the other symptoms you have may flare up as well, not just because you've been expending energy, but because you may also be eating food you don't normally eat and altering your sleeping patterns. People with CFS and ME simply don't have the flexibility to handle changes. And Christmas is a major change from daily routine.

There are several things you can do to help mitigate the post-holiday crash.

First, if you've overdone it over the holidays, and are now crashing, don't beat yourself up. Having an illness that relegates you to living your life in a box is not only restricting, it is stressful. If you do a little too much at Christmas, it is simply because you are trying to join the human race. There is nothing wrong with that. The ability to enjoy company, to eat and drink and make merry, and to do simple, normal things becomes all the more precious when it's been curtailed. So, even if you do crash – it may have been worth it for the sake of your overall wellbeing.

Second, you can take breaks. A number of years ago, when I was spending the vast majority of my days in bed, I had to attend a wedding. The reception was in a house, so I simply found a couch and lay down. Eventually, someone wandered into the room, noticed that I was lying down, and said, “That's a good idea.” She lay down on the floor beside me, and we had a pleasant conversation. Soon, several other people had joined her. There were now five people lying next to one another on the floor, chatting. Throughout the evening, people got up and left, and others took their places. The lesson I learned was that I didn't have to (literally) rise to the occasion. (And, it appears, other people were more than happy to take a break as well.)

Third, plan to have one or more “down days” (as many as you need). It's one thing to have a crash, it's quite another to prepare for one. I have found that whenever I need to do something that requires more energy than I have, planning to have sufficient rest time afterward makes it easier to get through the event – and to recover from it. This may require a bit of scheduling, but it will reduce your stress levels considerably.

Managing this illness is just as important as treating it. The trick is to find a strategy that works for you.

My best wishes for a happy and healthy New Year!

Erica

THANK YOU!!

I would like to thank the 1433 people who downloaded free copies of the book over the weekend. You've made my Christmas very joyous this year!

Many of the people who contacted me wrote that they had had CFS or ME for decades. They had lost their jobs, homes and families. There is very little out there to help this group of severely ill people, so I do hope my book provides a source of hope.

To that end, I will offer the book again for free sometime in January. There were some glitches in Amazon's system. People in Canada could not order the book, and many people had problems with the free app. I've contacted Amazon, and once these problems are ironed out, I will post the book for free again. I want everyone to have a copy.

If you have a copy, do please help me offer this book again for free by posting a review on Amazon. Many of the sites that post giveaways only do so if there are more than 18 reviews. To date, this book only has 12. 

YOU DON'T NEED A KINDLE TO READ THIS BOOK!! Amazon has free apps that will allow you to download it directly onto your computer. Do this now!

Get free app here.

CFS TREATMENT BOOK - FREE TODAY!

I'm giving the CFS/ME community a Christmas present. It's the second edition of CFS: A Treatment Guide. (The first edition was published by St. Martin's Press in 1998.) It has now been updated and I am giving it away. I'd like as many people with CFS/ME as possible to have a healthier 2013.

On December 22nd and December 23rd 2012, Amazon.com will be giving away free copies of Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition. Dr. Charles Lapp calls this "the book every patient should have." The book includes over 100 effective treatments, spanning the full range of pharmaceutical and complementary modalities, an in-depth discussion of symptoms with cross-referencing to appropriate treatments, the latest research into the causes and mechanisms of the illness, doctors' protocols, coping techniques, special sections for managing chemical sensitivities, dietary restrictions and the special needs of children, as well as extensive appendices covering resources, locations of doctors and clinics, local, national and international organizations, and internet ordering information. The book also features over 2600 useful links to further reading, research articles, and patient reviews. 

YOU DO NOT NEED A KINDLE TO READ THIS BOOK!! You can read it on your computer. Go to http://www.amazon.com/gp/feature.html/ref=kcp_pc_mkt_lnd?docId=1000426311

and download the free app!

Order the free book here: http://www.amazon.com/Chronic-Fatigue-Syndrome-Treatment-ebook/dp/B009B9X36YFor more information go to: http://www.cfstreatmentguide.com

Dr. Derek Enlander's Treatment Protocol for CFS/ME

Dr. Derek Enlander is a native Irishman from Belfast. He came to New York as Assistant Professor of Medicine at Columbia University and then became Associate Director of Nuclear Medicine at New York University. Dr. Enlander is on the faculty of Mount Sinai Medical School and is an attending physician at Mount Sinai Medical Center in New York.

Dr. Enlander's protocol is based on treating the immune system dysfunction that underlies CFS/ME. He has an active research program, including Ampligen and GcMAF, in which his patients are invited to participate. Dr. Enlander is the founder of the ME/CFS Center, an international collaboration which includes virologist Illa Singh, geneticist Eric Schadt, immunologist Dr. Miriam Merad, Dr. Kenny De Meirleir and Dr. David Bell. (Sadly, videos of the 2011 Mount Sinai ME/CFS conference are no longer available.)

The following are current treatments used by Dr. Enlander (taken from his website). (Please go to Dr. Enlander's website for current treatments.)

Hepapressin Injection: Hepapressin is an amino acid complex similar to Kutapressin, derived from Argentinian bovine liver. Like Kutapressin, it is an immune system adjuvant. As Hepapressin on its own is rarely effective, Dr. Enlander combines the injection with his own specialized formula to produce a more efficient complex.

Immune Resist is an amino acid food additive. It is an oral capsule taken once daily. It is thought to be involved in the immune system and may diminish fatigue and "brain fog," and assist in concentration and short-term memory.

IMMUNOPlus: Immunoplus is given as an adjunct to Immune Resist. It contains folinic acid, along with other amino acids and other components in the methylation cycle. Dr. Enlander believes that the methylation cycle is part of the CFS/ ME dysfunction. 

Catapult contains phosphatidyl serine and cat’s claw. It is a non-prescription OTC supplement used to diminish "brain fog." Dr. Enlander reports quite good results with it. 

Neurontin: Neurontin is a prescription drug used as an anti-epileptic in grand mal seizures. In CFS and fibromyalgia the abnormal impulses that come from the brain are thought to be suppressed by Neurontin, allowing muscle fibers to be less fatigued. The daily dose can be up to 2400 mg per day.

Experimental Treatments

Low Dose Naltrexone (LDN): Opiate receptors are activated by naltrexone, which in low dose produces a cytokine reaction. This is thought to be helpful in CFS. Dr. Enlander states that it is too early to determine the effects.

LECTROLYTE or RECUP (a Spanish Electrolyte mixture) has been successful in fortifying muscles. LECTROLYTE may also reduce muscle pain. It contains 450 mg sodium, 125 mg potassium, 15 mg each of calcium and magnesium. LECTROLYTE does not contain sucrose or fructose (RECUP does contain these sugars).

Valcyte: Valcyte is a prescription antiviral medicine that Dr. Montoya at Stanford University has shown to be effective against the HHV-6 virus. Dr. Enlander collaborated in a study of Valcyte under the auspices of the HHV-6 Foundation. Patients interested in this treatment are encouraged to contact Dr. Enlander's office.

Ampligen: Dr. Enlander is cooperating with Hemispherx Corporation in a study of Ampligen in the treatment of Chronic Fatigue Syndrome.

GcMAF: GcMAF is a naturally occurring substance in the human body which destroys pathogens by activating macrophages. Several CFS physicians, including Dr. Cheney, Dr. De Meirleir, and Dr. Elson (Northampton, MA), have begun using GcMAF for patients who test high in nagalase, the enzyme that destroys naturally occurring GcMAF in the body.

EECP Treatment: EECP (enhanced external counter pulsation) therapy is an outpatient treatment used to improve blood circulation and increase cardiac output. It is normally used for angina and heart failure. In ME/CFS the treatment sessions are 30-45 minutes and are given once a week. During the treatment, the patient lies on a comfortable treatment table with large blood pressure-like cuffs wrapped around the legs and buttocks. These cuffs inflate and deflate continuously at specific times between heartbeats, a continuous electrocardiogram (EKG) set the timing so the cuffs inflate while the heart is at rest, in diastole, when it normally gets its supply of blood and oxygen. The cuffs deflate at the end of that rest period, just before the next heartbeat, systole. When timed correctly, this will decrease the afterload that the heart has to pump against, and increase the preload that fills the heart, increasing the cardiac output.

CONTACT:

Derek Enlander, M.D.
860 5th Avenue, Suite 1C
New York, NY 10065
Phone: (212) 794-2000
Fax: (212) 327-2125
Email: mecfsoffice@enlander.com
Website: http://www.enlander.com/

Dr. Enlander accepts Medicare (not HMO), Medicaid (NOT) managed care, GHI-HealthNet- HMO – POS, PHCS, United Health, Cigna, JJ Newman, Oxford freedom Plan..

Fibromyalgia and the Brain: New Clues Reveal How Pain and Therapies Are Processed

Science Daily. Nov. 10, 2012 — According to research presented this week at the American College of Rheumatology Annual Meeting in Washington, D.C., pain experienced by people with fibromyalgia may be caused by a problem with the way pain stimuli are processed in the brain. Abnormal pain signal processing may also be related to a lack of responsiveness to opioids, a common class of pain relievers.

Fibromyalgia is a common health problem that causes widespread pain and tenderness. An estimated five million Americans are affected by the disease, with co-occurring symptoms including chronic fatigue, cognitive problems, and poor sleep. Fibromyalgia is often difficult to diagnose and the condition is most common in women, though it can occur in men.

"Although we have known for some time that the brain is a key player in the pathology of fibromyalgia, we have yet to understand how pain regulation is disrupted in this condition," says Richard E. Harris, PhD, assistant professor at the University of Michigan, Ann Arbor, Mich., and lead investigator of the study.

Previous studies indicate that fibromyalgia patients have increased sensitivity to temperature, touch, and pressure. Moreover, some of Dr. Harris's previous work demonstrated that people with fibromyalgia produce an increased amount of endogenous opioid peptides (also known as endorphins that naturally relieve pain) that act on the brain's μ-opioid receptors to "naturally" reduce pain. Other work by this same group showed that the fibromyalgia brain displays an enhanced response to painful stimuli, suggesting a problem with pain processing. This current study sought to determine if these two factors, altered function of μ-opioid receptors and enhanced brain response to pain, actually occur simultaneously within the same group of people with fibromyalgia -- and within the same brain regions.

To answer this question, researchers from the University of Michigan measured the change in blood flow in the brains of 18 patients with fibromyalgia following a painful stimulus, using functional magnetic resonance imaging. They also measured the μ-opioid receptor binding availability with additional tests. These data were collected before and after acupuncture and sham acupuncture (which is essentially placebo acupuncture) treatment designed to reduce pain. The association between the brain's response to pain and the binding of μ-opioid receptors was then examined.

The study revealed a strong negative association between the brain's response to pain and the binding availability of μ-opioid receptors: the lower the receptor binding availability the greater the brain's response to pain. A positive correlation was also observed in a classic pain prevention region, the right dorsolateral prefrontal cortex. Importantly these associations were also related to the pain sensations patients reported.

For the first time, this study shows that μ-opioid receptor binding is tightly associated with the brain's response to pain in fibromyalgia. The data leads researchers to speculate that some individuals with fibromyalgia may have a down-regulation or decrease in opioid receptor activity that may exaggerate pain sensitivity. Moreover, these same individuals are likely to not benefit from opioid medications as they may have fewer functioning receptors.

"This data may also explain why some chronic pain states show similarities with paradoxical opioid-induced pain sensitivity," says Dr. Harris.

Funding for this study was provided by the National Institute of Health and the Department of Defense.
Original article:
http://www.sciencedaily.com/releases/2012/11/121111153426.htm

Discovery Could Lead to Faster Diagnosis For Some Chronic Fatigue Syndrome Cases

Epstein-Barr Virus

November 14, 2012 by Emily Caldwell in Diseases, Conditions, Syndromes

In a pilot study of six patients, scientists detected specific antibodies linked to latent Epstein-Barr virus reactivation in blood samples from people who had experienced classic CFS symptoms and responded to antiviral treatment. Control blood samples from 20 healthy people showed no such antibodies.

The research team, led by scientists from Ohio State University and Oakland University William Beaumont School of Medicine, acknowledges that the number of patients is small. But the researchers say the study's power rests in their access to 16 months of blood samples for each patient – a collection allowing for an unprecedented longitudinal look at CFS.

The researchers plan to move forward with development of a clinical laboratory test that can detect these antibodies in blood samples.

The study is published in the Nov. 14 issue of the journal PLOS ONE. The Epstein-Barr virus is a human herpes virus that causes infectious mononucleosis and several different types of tumors. An estimated 95 percent of Americans have been infected with the virus by adulthood, according to the Centers for Disease Control and Prevention (CDC), but fewer than half have experienced an active illness. Once a person is infected, the virus remains dormant in the body, and can be reactivated without causing symptoms of illness.

In these six patients, the study suggests that a latent Epstein-Barr virus had begun to reactivate, but that the newly awakened virus never reached its full potential to take over its host cells. That partial reactivation advanced enough to generate at least two viral proteins, DNA polymerase and dUTPase, and these patients produced antibodies specifically designed to identify and neutralize those proteins for more than a year.

The scientists theorize that even in the absence of a complete active infection, these viral proteins' ability to induce inflammatory chemical signals causes enough immune system chaos to lead to CFS. The disorder's main symptom is profound fatigue for at least six months that does not improve with rest, and is accompanied by problems that can include weakness, muscle pain, impaired memory and depression. Because the illness mimics many other disorders, diagnosis is difficult. An estimated 1 million Americans have CFS, but experts believe only 20 percent are diagnosed.

The study's senior researchers agree that the work should be repeated in more patients "to confirm that these observations are real," said virologist Ron Glaser, director of the Institute for Behavioral Medicine Research at Ohio State and a co-author of the study. "But finally, after more than 20 years, this is at least something to go on."

Glaser's primary collaborators on this work are Marshall Williams, professor of molecular virology, immunology and medical genetics at Ohio State, and A. Martin Lerner, a professor of internal medicine at Oakland University William Beaumont School of Medicine.

Ohio State and Lerner's private practice, CFS LLC, have applied for a patent for the diagnostic method.

Glaser and Williams first published a paper in 1988 suggesting that these two viral proteins associated with partially reactivated Epstein-Barr virus could function as biomarkers for certain illnesses, including CFS. Meanwhile, Lerner became severely ill in 1986 and struggled for 10 years with CFS symptoms before treatment with antivirals dramatically improved his health.

Lerner, an infectious diseases specialist, runs his private CFS practice in Michigan, and his long-term tracking of patients' characteristics and response to treatment made this longitudinal research possible.

The fact that CFS patients experience different symptoms and multiple types of viral and bacterial infections has led researchers to believe CFS potentially has numerous causes. That lack of uniformity also complicates the diagnostic process and development of treatments.

"Part of the problem in trying to identify an agent or biomarkers for chronic fatigue syndrome is the extreme variability among people who say they have CFS. How to sort that out has held the field back a lot of years," said Glaser, who has studied the Epstein-Barr virus (EBV) for decades.

Lerner had long ago separated 142 of his patients into two groups: those who had tested positive for various antibodies against three types of herpes viruses and responded to months-long treatment with one of two types of antivirals, and a smaller group that had viral infections and a variety of co-infections who showed minimal response to antiviral treatment. As part of this tracking, he collected multiple blood serum samples for more than a year from each patient.

From those patients, he selected blood samples from six for this study. Five had been identified as an Epstein-Barr virus subset, and the sixth had Epstein-Barr virus and a bacterial co-infection. For comparison, researchers collected samples from 20 healthy people matched to the six CFS patients for age and sex.

Lerner, too, had independently hypothesized that CFS patients might be experiencing partial virus reactivation. Patients might test negative for the most active antibodies required to fight a virus, but could still recover from CFS after long-term antiviral treatment. One antiviral he uses is known to inhibit DNA polymerase, which would halt Epstein-Barr virus reactivation in its tracks.

With the CFS patients' and control blood samples in hand, Williams used a highly sensitive laboratory method to detect whether they contained antibodies to the two target Epstein-Barr viral proteins, DNA polymerase and dUTPase, that are produced early in the process of viral reactivation.

Overall, 78.8 percent of the serum samples from the six CFS patients were positive for antibodies against DNA polymerase and 44.2 percent were positive for antibodies against dUTPase. No antibodies to these two proteins were detected in the 20 control samples.

"Every one of the six had antibodies to DNA polymerase or EBV dUTPase and those antibodies persisted over some 408 days," Lerner said. "And the antibody levels were extraordinarily high." High levels of antibodies circulating in the blood suggest long-term immune activation against those proteins.

Williams noted that the levels might be less significant than the antibodies being present in the first place.

"If you look at most healthy individuals, they wouldn't have any reason to have an antibody against either of these proteins," he said. "The antibodies alone are a good differentiator."

Reference:

Antibody to Epstein-Barr Virus Deoxyuridine Triphosphate Nucleotidohydrolase and Deoxyribonucleotide Polymerase in a Chronic Fatigue Syndrome Subset 

A. Martin Lerner, Maria E. Ariza, Marshall Williams, Leonard Jason, Safedin Beqaj, James T. Fitzgerald, Stanley Lemeshow, Ronald Glaser . PLoS ONE. 2012; 7(11): e47891 

Read the abstract of the PLoS  ONE article here: http://www.ncbi.nlm.nih.gov/pubmed/23155374

Read the full article here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3498272/

Read more at: http://medicalxpress.com/news/2012-11-discovery-faster-diagnosis-chronic-fatigue.html#jCp

Coping Tip - Turn Off Your TV

Most of us are in the habit of watching television. We grew up with it. At this point it has become part of our culture. Even when you are not sitting down and watching, someone else invariably is, and it hums away in the background, adding the chatter of canned voices to our environment.

Not surprisingly, many people with CFS/ME cannot tolerate the noise. Dr. John Richardson, a British physician who treated thousands of ME patients, listed the inability to tolerate chatter as one of the primary symptoms of ME. Not only do people have difficulty with the noise, they have problems with the sudden shifts of light. A number of years ago, several Japanese children suffered seizures while watching Pokemon on TV. The rapid flickering of light led to a massive firing of neurons, and the children collapsed.

While people with CFS/ME do not usually run the risk of having seizures while watching TV, photophobia (sensitivity to light) is one of the most common symptoms of the illness. Our nervous systems over-respond to light and other stimulation, which can lead to pain, a creeping sensation, anxiety and malaise.

The ideal solution for this problem is to turn off the TV. If you live in a household, this may not always be possible. But turn it off when you can. If there is a program you would like to watch, you can minimize the effects of flickering by making sure the room is well lit. Keep as far from the screen as possible, and wear polarized sunglasses.

Most important, do not watch TV at night if you suffer from insomnia. While watching a movie on a DVD can be pleasant in the evening, watching TV is too stimulating. You will have a more restful night if you read before bed.

Getting Well: The Philosophy

There are many ME/CFS treatment approaches, countless protocols, and a lot of what I can only call “stances” that go along with these. Some practitioners maintain that you can only get well if you purge your body of its accumulated toxins. Many insist on a completely natural approach, while most conventional doctors will prescribe pharmaceuticals and merely smile vaguely when you bring up the topic of supplements. Every practitioner has his or her own bias. 

Unless you are fortunate enough to see a ME/CFS doctor with considerable experience, you probably will be subjected to dogma.

You are not a practitioner, you are a patient, so you don't have to be limited by the confines of prejudice. There is only one philosophy that truly works for ME/CFS patients: if it works, do it. When you have the mother of all multi-system illnesses, this is not a time to cross treatments off your list simply because you don't believe in them.

As a good case in point, I offer myself. Before falling ill, I was an all-natural kind of person. I fed my family organic food, much of which I grew myself (and still do). I used herbal remedies for the most part, and I even wrote a book, The Supermarket Survival Handbook (never published), about safe, non-toxic products. 

I still espouse the use of safe, non-toxic products, but during my long experience with ME/CFS I have learned that there is a place for everything. I take a small amount of clonazepam and a drop or two of doxepin to help me sleep, because no herbal remedy or complementary modality has been able to touch my insomnia. I also take a slew of vitamins, all of them in fact, and other supplements: fish oil, magnesium, zinc, NAG, enzymes, butyrates, and many more. The single treatment that has helped me the most was a cortisol injection. I take hormones (estrogen and progesterone), and I also visit acupuncturists. I meditate.

All of these things help, some quite dramatically. They are my bag of tricks – treatments that I pull out of my hat as needed.

My advice to people with ME/CFS is to develop your bag of tricks, and not stand too much on principle. The most productive approach is a pragmatic one. Do what works - for you.

Top 10 Nutritional Supplements for ME/CFS

Nutritional supplements are an essential component of any ME/CFS treatment protocol. 

Research has shown that people with ME/CFS are routinely deficient in many important nutrients (notably zinc, magnesium, and carnitine). These deficiencies, in and of themselves, can decrease the degree to which the body can absorb and make use of other nutrients. 

Even when there are no clinical nutritional deficiencies, the physiological demands of a chronic illness make it necessary to provide additional nutritional support – especially in light of the numerous GI problems prevalent in the ME/CFS population which may lead to malabsorption. For these reasons, most ME/CFS doctors recommend supplements.

The ten supplements most frequently recommended by ME/CFS physicians are:

1) An all-round nutritional supplement (multi-vitamin and minerals)
2) Vitamin B-12
3) Magnesium
4) CoQ10
5) Carnitine
6) Fish Oil
7) Vitamin C
8) Essential  Fatty Acids (EFAs)
9) Vitamin D3
10) Zinc

Those are the standard supplements that nearly every ME/CFS physician will instruct you to take at one point or another.

My own experience with nutritional supplements is that recovery is virtually impossible without them. They have helped stop the "wasting" that occurs during severe relapses, they have provided nutrition during times when my body could not digest food, and they have supplied the raw materials without which the body cannot heal itself.

And even when I didn't notice immediate benefits from supplements, I always felt a decline in energy a few weeks after I had stopped taking them. (The liver runs out of its stored reserves after roughly six weeks.)

Here are the ten supplements which have benefited me the most (in order):

1) Fish oil - I take the enteric-coated form, Fisol. This was of immediate benefit to me, and I've taken it every day without fail for seven years. (Fish oil is neuroprotective.)

2) B complex vitamins - I take these in a sublingual tablet (Coenzymate B Complex).

3) Butyrate (ButyRen, Butyrex) - has helped with intestinal healing

4) Vitamin A - has improved my sleep

5) Vitamin C - immediate increase in energy. I take the powdered form (pure ascorbic acid). Most vitamin pills contain very little bioavailable vitamin C.

6) Vitamin D3 (gelcap)

7) Vitamin E (gelcap, mixed tocopherols)

8) Magnesium glycinate

9) Zinc carnosine

19) B12 (sublingual)

For specific symptoms, I also take the appropriate supplement. Carnitine, for example, was very useful for increasing muscle strength and appetite when I was severely ill. (Warning: those with hypothyroidism should not take carnitine, as it blocks thyroid hormone.) 

Ubiquinol (CoQ10) has helped increase my energy levels, as has D-Ribose. And when I was unable to tolerate any supplements (or digest food), spray vitamins (Vitaspray), and Reliv were both essential.

Over the years, there have been many others.

Every person is a little different. With patience, perseverance, and a lot of trial-and-error, you will find your own "Top 10."

My best wishes for your speedy recovery!

Erica

Chronic Fatigue Syndrome: System Under Stress

ScienceDaily (Nov. 14, 2012) — Australian researchers have discovered for the first time that reduced heart rate variability -- or changes in heart beat timing -- best predicts cognitive disturbances, such as concentration difficulties commonly reported by people with chronic fatigue syndrome (CFS). This adds to the growing body of evidence linking autonomic nervous system imbalance to symptoms of this poorly understood disorder.

The findings are reported in the journal PLoS ONE.


Chronic fatigue syndrome is characterised by medically unexplained, disabling fatigue and neuropsychiatric symptoms of at least six months' duration. The disturbance underlying the symptoms in CFS is still poorly understood.

"We have studied autonomic function in CFS for some time and our findings clearly indicate a loss of integrity in stress-responsive neural and physiological systems in CFS. Patients with this condition are hyper-responsive to challenges arising both from within the body and from the environment," says lead researcher, Associate Professor Ute Vollmer-Conna of the University of New South Wales in Sydney, Australia.

"Even when they sleep, their stress-responsive neural systems are on high alert, signalling that it is not safe to relax. I think this condition may be understood by analogy to post-traumatic stress disorder, just that in CFS the original trauma is most likely a physiological, internal one, such as a severe infection."

In a study of 30 patients with CFS and 40 healthy individuals, UNSW researchers recorded the heart beats of participants (via ECG) and analysed cardiac responses to cognitive challenges, and associations with mental performance outcomes.

The patients with CFS performed with similar accuracy, but they took significantly longer to complete the tests than people without the condition. They also had greater heart rate reactivity; low and unresponsive heart rate variability; and prolonged heart rate-recovery after the cognitive challenge.

Resting heart rate variability (an index of vagus nerve activity) was identified as the only significant predictor of cognitive outcomes, while current levels of fatigue and other symptoms did not relate to cognitive performance.

"This is the first demonstration of an association between reduced cardiac vagal tone and cognitive impairment in CFS. Our findings confirm previous reports of a significant loss of vagal modulation, which becomes particularly apparent when dealing with challenging tasks. The current results are consistent with the notion that CFS represents a 'system under stress'," Associate Professor Vollmer-Conna says.

The findings could lead to new ways to improve cognitive difficulties in people with CFS, including biofeedback assisted retraining of autonomic functioning, the researchers say.

Read the abstract here: http://www.ncbi.nlm.nih.gov/pubmed/23166694

Read the full PLoSONE article here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3498107/

Original ScienceDaily article is here: http://www.sciencedaily.com/releases/2012/11/121115133806.htm

CFS Treatment Guide Website: http://cfstreatmentguide.com

Will eating organic food cure you?

One of the questions that repeatedly arises in the CFS/ME community concerns the use of organic as opposed to conventional food sources. Should people with CFS/ME eat organic foods? The answer is yes. Will eating organic food cure CFS/ME? The answer is no.

Organic food has much to recommend it. First and foremost, if you eat organic food you are not ingesting all the chemicals that are routinely sprayed on conventionally grown food. It doesn't do anybody any good to be consuming petrochemical derivatives, much less people who have chemical sensitivities, as so many people with CFS/ME do. For people with CFS/ME it makes inherent sense to avoid putting harmful chemicals in our bodies. We are already struggling with an illness. Why add to the burden? From other standpoints – the geophysical ramifications of continued spraying of pesticides and herbicides – it is also a good idea to eat organic. In short, it can help you to eat organic, and it certainly won't harm you.

A second point to remember is that even organic food contains petrochemical and inorganic contaminants. The heavy metals that the soil has accumulated after decades of farming techniques that used arsenic and lead are all still there. (The only way to get rid of them is to remove the soil.) There are pollutants in the air that get washed into the soil with every rainstorm. And, of course, there are the breakdown products of chemicals that may have been previously used. Even strictly organic food contains the legacy of many years of conventional farming.

Personally, I prefer organic to conventional produce. It has more flavor. There is simply no comparison between one of those round, red things your supermarket calls a tomato and what comes out of an organic garden. Green beans, broccoli, potatoes and carrots - especially carrots - all taste sweeter, fresher ... more vegetal.

There is no doubt that pesticide-free food is better for you and better for the planet, but beware of advertisers who proclaim that a change of diet will cure CFS/ME. The reason it won't cure you is that eating conventionally grown food is not how you got sick. True, some people become ill after being exposed to pesticides, but in those cases the exposure was direct. Even if you remove the pesticide residues on your food, you will still have to deal with the actual cause of the illness.

CFS Treatment Guide Website: http://cfstreatmentguide.com

The Benefits of Establishing a Routine

CFS/ME disrupts your body's ability to maintain homeostasis. Therefore, anything you do to reduce your body's need to adjust to the outside environment will help you recover. To a certain degree, we can control our physical environment. We can heat or cool our homes, install humidifiers or dehumidifiers, purify the air – but one thing we often overlook is how we schedule our essential activities. One of the strategies that can take excess strain off your body is to stick to a routine – especially when it comes to eating and sleeping.

Developing regular eating and sleeping habits may seem trivial, but even for healthy people – who eat when they are hungry and sleep when they are tired – maintaining regular habits is an important part of staying healthy. The body is easily trained to anticipate when food will arrive (witness Pavlov's dogs). If your body knows that you will eat every day at noon, it will begin producing stomach acid and enzymes shortly beforehand, which aids digestion. The same holds true for sleep. If you go to bed at the same time every night, your body will naturally get sleepy at that time. There is no question that efficient digestion and adequate sleep are essential components of good health.

Following a routine can also provide a sense of security and stability that can make other stressful situations easier to handle. Many people with CFS/ME have noticed that there is a “straw that broke the camel's back” effect that comes with the illness. You can tolerate a certain amount of strain, but when the next activity comes along you simply collapse. In most cases, people experiencing this will wonder why they have crashed after doing something they have done before. What they are not taking into account is the other activities they have been engaged in. If you add irregular eating and sleeping habits into the mix, it simply decreases the amount of cushion you will have when other stresses come along.

It is not particularly important when or how you perform your eating or bedtime routines. The idea is to develop a regular and predictable pattern that helps structure your day and minimizes your body's need to adjust to change. The fewer adjustments your body needs to make, the less energy it must expend. Anything that reduces the workload on your body will produce immediate benefits. Your body will have more energy to heal itself, and, by controlling what is within your reach, you will have more energy to deal with those things that you cannot control.

CFS Treatment Guide Website: http://cfstreatmentguide.com

Who's Who in the CFS/ME Community: Dr. Lucinda Bateman

Dr. Lucinda Bateman is an internist specializing in the treatment of CFS/ME. She is a graduate of the Johns Hopkins School of Medicine. Dr. Bateman interned at the University of Utah for Internal Medicine and became certified by the American Board of Internal Medicine in 1991. Until 2000, when she opened her Fatigue Consultation Clinic, she practiced as a general internist.

Dr. Bateman's interest in CFS/ME began when she moved back to Utah in 1987 to begin her residency. Her older sister, Shauna Bateman Horne, had become chronically ill with a mysterious malady. The doctors were unable to diagnose her and came to the conclusion that she was suffering from depression. Their treatment recommendation was that she “take a night class.” Dr. Bateman suspected there was more going on and began investigating fibromyalgia and CFS/ME as possible causes of her sister's illness. In 2000, Shauna was diagnosed with Non-Hodgkins lymphoma and died from complications of a stem cell transplant in May of 2001. 

Dr. Bateman has served on the boards of the International Association of Chronic Fatigue Syndrome (IACFS/ME) and the CFIDS Association of America. Dr. Bateman is also the co-founder and a board member of OFFER (the Organization for Fatigue and Fibromyalgia Education and Research). Since opening her Fatigue Consultation Clinic in 2000, Dr. Bateman has evaluated more than 1000 patients.


CONTACT
Dr. Lucinda Bateman
Fatigue Consultation Clinic 
1002 E. South Temple, Suite 408
Salt Lake City, UT 84102
Phone:  (801) 359-7400
Fax: (801) 359-7404
Email: FCClinic@Xmission.com
Website: http://www.fcclinic.com/Dr.Bateman.htm 

More Information

“CFS Treatment Tips”
http://www.youtube.com/watch?v=UWUz-yijDlo
This presentation was made for health care providers during the OFFER 2007 Conference. Dr. Bateman is a clear speaker, and makes several interesting points regarding diagnosis and treatment in this talk. 

“Dr. Lucinda Bateman: Fighting the Fight Against Pain and Fatigue” http://www.everydayhealth.com/chronic-fatigue-syndrome/spotlight-lucinda-bateman-chronic-fatigue-syndrome.aspx
This is an excellent article about Dr. Bateman's background and motivation for treating CFS/ME.

OFFER's Website
http://www.offerutah.org/aboutoffer.htm
OFFER has a very well organized website, with concise information about CFS/ME, support groups, events, and much more.

For more information on CFS/ME see: CFS Treatment Guide.

Books for those who can't read

People with CFS/ME suffer from a number of symptoms that can make reading nearly impossible: visual disturbances, headaches, vertigo, and cognitive impairments. These problems can also make watching TV or movies equally as difficult, resulting in a lifestyle that is severely restricted. A person who is too ill to engage in physical activity, and has no recourse to the distractions provided by books and films, may become even more isolated than the illness itself warrants.

Fortunately, there is a simple solution to the problem. Audiobooks provide access to novels and works of non-fiction in a format that does not strain the eyes. In addition, listening to a human voice, especially one that is well modulated, can be quite soothing. (I find that listening to a pleasant voice in the night, when I have insomnia, is very relaxing.)

Most libraries have a good selection of audiobooks. But if your library does not, there are various free services. Itunes has a collection of roughly 5000 titles. Books Should Be Free, has thousands of public domain books which you can listen to for free. Project Gutenberg, which also lists thousands of free public domain works in print, offers human-read audio books in more than sixty different languages. You can browse these by author or by language. Librivox is another free service that offers audiobooks from the public domain. 

If you are able to spend the money, Audiobooks.com offers over 20,000 titles for a monthly subscription fee of $30. The books can be downloaded onto your computer. You can also purchase audiobooks on Amazon.com and from most major booksellers.

If you do a Google search for “audiobooks,” you will find many sites from which you can pick and choose according to your interests. There are also sites that review audiobooks. These are especially useful, because they not only cover the content of the book, but review the voice of the reader as well. (Nothing is worse than having to listen to a voice that is grating.) My favorite review site is Read To: Reviews of Books Provided by the Talking Books Service of the Royal National Institute of Blind People. This blog is maintained by Richard Wadwell, who does an excellent job of reviewing audiobooks and providing essential information.

Resources:
http://www.audiobooks.com/

https://itunes.apple.com/us/app/audiobooks/id311507490?mt=8

http://www.booksshouldbefree.com/

http://www.read-to.blogspot.co.uk/

For more information on CFS/ME go to CFS Treatment Guide