Category: Research

Australians Find a Cure for ME/CFS!!!!!

Christmas may have come early for the millions of people around the world affected by Myalgic Encephalomyelitis (ME), also erroneously called chronic fatigue syndrome (CFS).

As reported yesterday (it’s Australia and the 23rd) by Sue Dunlevy, National Health Reporter for News Corp Australia, scientists have confirmed ME is real. red box present They not only have a possible blood test for it, but there are already drugs on the market that may work.

A team of scientists at Griffith University, led by immunology professor Sonya Marshall Gradisnik, identified errors in calcium channels in each cell. These channels located on the outer membrane open and close to allow movement of calcium in and out of the cell.  Calcium is used by just about every cell in the body and is an important part of the immune system.

Calcium Channel Dysfunction

According to the study, patients with ME have lower levels of calcium in our cells and our cells do not store calcium as do healthy people. The immunologists believe this is the basis for the many different signs (things you can see and measure) and symptoms )(what you feel) that are a part of having ME.

Calcium signaling is vital to proper functioning of the central nervous system (brain and spinal cord), the pancreas (insulin production), kidneys, gastrointestinal (GI) tract, blood vessels and the heart. Some cardiac patients take medications to help regulate their calcium channels, and these are being examined as a potential treatment.

A test may be developed from micro RNA changes found in the blood.

What do you think? Will this be another XMRV retrovirus that appears promising when reported out of one lab, but cannot be replicated in other labs and finally ends with a whimper?

You may also be interested in these:

Facts about ME/CFS

New research confirms people with ME/CFS are exhausted at the cellular level

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Is Functional Medicine a Viable Alternative?

Functional Medicine, which I discussed in this blog post, could be the lynchpin in one of the most significant shifts in the health and medical paradigm in the past century.

Linus Pauling, Ph.D., best known for his work promoting vitamin C, was among the first to question the impact food and supplements have on cognition. Back in the late 60s and into the 70s his research into disorders like anxiety and depression, and mental illnesses like schizophrenia was called Orthomolecular (right molecule) Psychiatry.  Eventually, this approach was called Orthomolecular Medicine.

Pauling was among the first to publically state that most people require vitamins, minerals, and nutrients in much larger amounts than those in the Recommended Dietary Allowances (RDAs). Pauling was often called a quack by conventional doctors for his belief that massive doses of vitamins could cure mental disease, especially after medical studies in the late 70s and 80s showed no difference between patients treated with vitamin C and those taking a placebo. Undeterred, Pauling continued to publish books and promote Orthomolecular Medicine until his death in 1994 from prostate cancer which he said was held at bay for 20 years due to high doses of vitamin C. (Source)

In a Business Week cover story, Medical Guesswork, published May 29, 2006, researcher Dr. David Eddy could find scientific evidence for only 20-25% of conventional medical practices, products, and procedures. The doctors who maligned Dr. Pauling were acting like the old saying of the pot calling the kettle black. 

Playing roulette with healthcare

 

 

Functional medicine (FM) is proven to reverse hypertensionobesity, heart disease, and prostate cancer. Dr. Dean Ornish, famous for his dietary approach to heart disease that proved diet could reverse atherosclerosis (plaques in artery walls), continues to use diet and lifestyle as treatment.  A meta-analysis of randomized clinical trials conducted by the National Institutes of Health (NIH) found positive outcomes and cost savings of up to 73% for natural products when compared to conventional medical treatment.

Why Functional Medicine is Better

Practitioners have hundreds of effective FM treatment protocols; most have excellent evidence to support their use. There are evidence-based treatment protocols from other natural disciplines, such as acupuncture, chiropractic, herbal medicine, and naturopathy, too.

In all of the “alternative” treatment modalities, the whole person/body is taken into account, both in the diagnosis and treatment stages. How many times have you asked a doctor about something else bothering you only to be told, “I’m an X. You need to see a Y doctor.”

FM, Traditional Chinese Medicine (TCM), Ayurveda and Tibetan Medicine are all major health systems that treat the root cause of an illness, not just the symptoms. These treatments are much safer and have fewer negative side effects, too. Treatments are usually more effective and are often able to reverse a condition using diet, lifestyle and herbal medicines, while conventional medicine can only manage an illness and its symptoms. Combining scientifically proven allopathic (conventional) treatments with any one of these traditional medical systems produces an integrated medical solution.

Importantly, the diagnostic tests widely used in FM are able to identify cells that are becoming diseased but are not yet symptomatic. This often occurs five to ten years before conventional medicine diagnoses a problem. To demonstrate how some tests are able to identify cells that are moving toward chronic disease we need to know that, in many cases, cells go through five sequential stages of deterioration.

Conventional medical tests usually detect changes in biochemistry at the dysfunction stage, or even later, when cells are mutated or already diseased. Surgery, radiation, chemotherapy and/or other interventions are offered by conventional doctors to eradicate or ameliorate a condition that cannot be detected until there are a large number of diseased cells. This makes it difficult, but not impossible, to use safe and effective natural treatments.

An example is a study where 50% of patients with what is called End-Stage Renal Disease were able to get off of dialysis after taking 180 mg of CoQ10 for three months.  In these patients, most kidney cells were likely still in the early stages of deterioration and could be rehabilitated. But the other half who were not able to get off of dialysis had too many cells that were mutated or diseased.

Modern medicine is literally at a crossroad. Those of us with chronic illnesses and conditions can continue to put all our faith and hope in conventional medicine or we can step outside our comfort zone and try other approaches. I’m not suggesting everything in conventional medicine is bad and needs changing. I was educated in that medical model and because of that, I saw its good points and flaws firsthand.

Get me to a helicopter and trauma unit if I’m ever in a major accident, like in 1979 when I suffered a traumatic brain injury and almost lost my right leg. I walked out of that hospital two months later with only minor after effects. But now that I have a chronic disease, ME/CFS, conventional medicine has nothing for me. My symptoms and those of the million other Americans with this damn disease are managed with drugs that heavily impact our quality of life. No MD or DO has done anything about the cause…too often because we are not believed to have a “real” illness.   

Our nation needs a true integration of traditional medical systems used for thousands of years, the new functional approach, and conventional medicine. Taking the best of all these paradigms and combining them will create a medical system that truly saves lives and prevents as much illness, suffering, and excessive spending as possible. The direction is clear.  All we need is someone to step out and lead the way.

Check out these, too:

Sugar is soooo bad for you and so is the sugar industry

What Have We Done to the Earth

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Facts about ME/CFS

This is the best introduction and summary to this devastating disease I’ve seen recently. Many thanks to Solve Me/CFS Initiative for their reblog permission. (No sense reinventing the wheel, folks.)

What Is ME/CFS?

Myalgic encephalomyelitis (ME), commonly referred to as chronic fatigue syndrome (CFS), is a complex and debilitating chronic disease with a serious impact on one’s quality of life.

Who Gets ME/CFS?

Approximately 1 – 2.4 million people in the United States have ME/CFS, and the condition affects millions more worldwide. Although research has shown that ME/CFS is about two to four times more likely to occur in women than men, ME/CFS strikes people from every age, racial, ethnic, and socioeconomic group.

What Are the Symptoms of ME/CFS?

If you think you may have ME/CFS, take our quick online quiz.

ME/CFS symptoms, which can often be made worse by standing upright, include

  • Extreme exhaustion
  • Non-restorative sleep
  • Brain fog/cognitive impairment
  • Joint pain
  • Inflamed lymph nodes
  • Persistent sore throat
  • Severe headache
  • Neurological abnormalities
  • Complete organ system shutdown
  • Sensitivity to light, sound, odors, chemicals, foods, and medications
  • Irritability, depression, and mood swings

Because these symptoms are shared with many other illnesses—and because many of these conditions lack a diagnostic test or biomarker—unraveling which illnesses are present can be difficult. Some patients actually receive diagnoses for multiple conditions. Common conditions that occur along with ME/CFS include the following:

  • Fibromyalgia
  • Orthostatic intolerance
  • Irritable bowel syndrome
  • Interstitial cystitis
  • Temporomandibular joint disorder
  • Chronic pelvic pain
  • Multiple chemical sensitivity disorder

How Is ME/CFS Diagnosed?

Studies show that fewer than 20 percent of ME/CFS patients in the United States have been properly diagnosed. Diagnosing ME/CFS is a challenging process because there is still not one diagnostic test or biomarker that’s conclusive. The process requires tests to rule out other conditions that may present similar symptoms before a diagnosis of ME/CFS can be established. It can take months.

Diagnosis can also be complicated by the fact that symptoms and severity of ME/CFS vary considerably from person to person. Seek care first from the healthcare provider who knows you best and will work with you to rule out other possible causes of symptoms and identify other conditions.

How Is ME/CFS Treated?

Since no cause or cure for ME/CFS has been identified, treatment is directed at relieving symptoms. Although there’s no single treatment that fixes the illness at its core, there are treatments that can improve symptoms, increase function, and allow people with ME/CFS to engage in activities of daily living.

Sleep problems, pain, heart rate irregularities, gastrointestinal difficulties, allergies, and depression are some of the symptoms that can potentially be relieved by treatment.

Alternative therapies are also often explored in an attempt to relieve symptoms. Acupuncture, hydrotherapy, yoga, tai chi, and massage therapy have been found to help and are often prescribed for symptom management.

If you think you may have ME/CFS, take our quick online quiz.

What Is It Like Living with ME/CFS?

The severity of ME/CFS varies greatly from patient to patient, with some people able to maintain fairly active lives. For others, ME/CFS has a profound impact. About 25 percent of people with ME/CFS are disabled by the illness and there’s often a pattern of relapse and remission. Most symptoms are invisible to others, which makes it difficult for family members, friends and the public to understand the challenges of the condition.

More severe ME/CFS patients have been found to be more functionally impaired than those with other disabling illnesses such as type 2 diabetes, congestive heart failure, hypertension, depression, multiple sclerosis, and end-stage renal disease. These same patients have the lowest median quality of life scores of any disease tested, including lung cancer, rheumatoid arthritis, and brain stroke.

Why Has ME/CFS Progress Been So Slow?

The National Institutes of Health (NIH) publishes a list annually showing its spending on various diseases. In 2015, the ME/CFS research budget, Spending_Graphic_Federal-300x183ranked in order by research dollars, was 249 out of 265 diseases funded—almost at the very bottom. In actual dollars, government spending on ME/CFS is less than is spent on hay fever.

To really make headway in a timely manner toward making ME/CFS understood, diagnosable, and treatable, we need more government funding.

Sugar is soooo bad for you and so is the sugar industry

A couple of days ago there was a paper published online in PLOS Biology that outlined how the Sugar Research Foundation (SRF) doubled down on misleading consumers by stopping a 1970 study that withheld information the microbiome may be an important factor in sugar-caused high triglyceride levels and that sucrose (sugar) consumption, compared to starch (like potatoes, bread, etc.), might be associated with bladder cancer!

It seems Big Sugar underwrote research at the University of Birmingham (England) to study rat diets, gut microbiota, and blood lipids (triglycerides) in the late 60s. Called Project 259, the rat research inconveniently found that sugar raised triglyceride levels and that it could be a human carcinogen.

This was at the same time that another suspected carcinogen, cyclamate, was being taken out of diet drinks and foods. Sugar didn’t want to be branded as aglucometer & sugar bowl cancer-causer–even though 2014 research found it feeds cancer cells preferentially–so the sugar industry stopped Project 259 before it was completed. More recent research shows that high insulin levels and growth factors caused by sugar ingestion influence cancer cell growth the most, as well as increasing the risk of other chronic diseases.

Earlier, some of the same researchers published a paper in the Journal of the American Medical Association describing how the sugar industry secretly funded a 1967 review in the New England Journal of Medicine that failed to mention how a rat study involving sugar showed increased cardiovascular disease and lipid (fat) levels in the blood and instead put the blame on dietary fats and cholesterol, leading to the whole fat scare and atrocities like SnackWells(R) that were low-fat, but full of sugar.

The article was very interesting to me, possibly because before I went back to school to be a nurse and then nurse practitioner, I worked in public relations for almost 20 years and was a member of the Counselors Academy of the Public Relations Society of America. I think it would be interesting to anyone who likes to read history, though. It certainly does not read like a typical medical research study.

Study adds to a wide body of literature documenting industry manipulation of science

Obviously, fake news wasn’t invented in the last presidential campaign. The sugar industry was in it up to their eyeballs way back when the Green Bay Packers were playing in the first SuperBowl and the Israelis and Palestinians fought the six-day long Yom Kippur War. But they weren’t the only ones.

Industries wanting influence over state and federal regulations have a history of funding research resulting in industry-favorable interpretations of controversial evidence related to health effects of smoking, therapeutic effects of pharmaceutical drugs, the relationship between sugar-sweetened beverage consumption and weight gain or obesity, and the causes of climate change (Oreskes N, Conway EM. Merchants of doubt. New York: Bloomsbury Press; 2010), among other issues.

 

And let’s not forget about one of the largest influencers of the USDA, FDA and Congress: Monsanto and its hit herbicide, RoundUp(R), also called glyphosate. I’ll get back to this in a later blog. There’s just too much of a horror story with them to mix this up with sugar’s withholding and also manipulating unfavorable data. The deliberate, profit-lead poisoning of America’s food supply by both the raw material manufacturers (agri-business) and consumer product manufacturers (General Foods, Kraft) really frosts me. Unfortunately, duplicity and data destruction goes on in the medical industry, too. And much of all this fakery and selective data selection is the brainchildren of public relations execs like I used to be.

I’ll get into all that later.

Promise.

Stay tuned!

 

 

 

Differences in chronic illness between older and younger people

Although ME/CFS was not listed as one of the chronic conditions* reported in a recent study of the differences in how older and younger people live with multiple chronic conditions (MCC, >2 co-occurring chronic conditions), there still were interesting findings. The study was performed by Mary L. Adams, MS, MPH and published in Preventing Chronic Disease, a CDC publication, and republished on Medscape.com, a site for health care professonals.

The study was robust, with over 200,000 records examined. Naturally, there were differences arising from life lessons learned and also from lifestyle choices, like smoking tobacco and obesity. Typically, MCCs increase with age, resulting in increasing Medicare costs. The study measured disability status, quality of life measures, chronic conditions, risk factors, and access to health care.

Surprisingly, people younger than 65 represented the majority (>60%) with MCCs. Among adults with two MCCs there were significant differences by age group in 18 measures, indicating that adults younger than 65 were worse off than adults aged 65 or older. Results were similar whether diabetes, depression, hypertension, high cholesterol (which could also be risk factors) were included.

Most uninsured adults are younger than 65 years, and younger adults with MCCs were more likely than older ones to report a cost barrier to their health care in the past year. Younger adults with MCCs were also less likely to report a recent routine check-up than adults aged 65 or older with MCCs. Taking preventive health measures, like seeing a healthcare practitioner or eating real food, is a learned skill and one I hope to teach through this blog.

Annual medical care expenditures for chronic conditions in adults aged 18 to 44, 45 to 64, and 65 or older with MCCs were similar at approximately $9,000 for those with 4 or more chronic conditions and approximately $4,000 for those with 2 or 3. Frankly, this surprised me. MM running-snake toyI probably spend $9,000 in out of pocket costs when I add up just my supplements and the costs associated with my service dog, The Divine Miss Em, like food, toys, and gear (just kidding).

Consistent with common sense, people with 3 or more chronic conditions and those with CVD (cardiovascular disease) or diabetes [OR ME/CFS] were more likely to report poorer quality of life than those with fewer or different chronic conditions. This analysis did not compare age groups and could have been influenced by higher rates of depression in younger people.

Differences in reported quality of life could also result from different contexts, because younger adults are more likely to be employed than older adults. For example, interpretation of activity limitations may depend on age, employment status, or both. However, even when controlling for measures including employment status and depression, these age differences remained for 14 measures representing a range of outcomes. The results may also reflect the direct or indirect impact of other factors such as smoking or obesity that are also higher among younger adults and may affect health and disability status.

An unexpected finding was the high rate of cognitive impairment among younger adults with MCCs. This could result from lower rates of other chronic conditions or factors such as lack of sleep, side effects of medication, or use of illicit drugs and may not be associated with future risk of dementia. Whatever the cause, being cognitively impaired may affect someone’s ability to self-manage other chronic conditions. Younger adults were also more likely than older ones to report risk factors that can increase the chance of developing additional chronic conditions in the future.

Age-related differences in MCCs using hospital discharge data indicated, for example, that among adults 18 to 44 years, depression and substance abuse were most common. This old-young comparison study’s results, which did not collect information on substance abuse, are consistent with the earlier finding by showing that depression was more common among working age adults with or without MCCs. Along with depression, risk factors of obesity and smoking were also higher among younger adults with and without MCCs. Whatever the cause of the differences, results highlight the current impact of MCCs on younger adults as opposed to Boomers. This study also supports the finding that teenagers now are the first generation to be less healthy than their parents.

How do you feel about this? Do you think a younger person with ME/CFS has a harder time than someone over 65?

 

 

 

*MCCs were based on up to 12 chronic conditions (heart disease, stroke, asthma, arthritis, chronic obstructive pulmonary disease, high cholesterol, cognitive impairment, diabetes, depression, chronic kidney disease, cancer other than skin, and hypertension).

New research confirms people with ME/CFS are exhausted at the cellular level

In a scientific study published October 24, 2017, that validates what I and millions of others already experience, a team from Newcastle University in the UK followed up on recent research showing our cells are in a hypometabolic state. They looked at a portion of the white cells in the blood called peripheral mononuclear cells (PBMCs) from both people with ME/CFS (n=52) and healthy controls (n=35). PBMCs are lymphocytes and monocytes, the immune system cells at the forefront of fighting disease.

My disease still suffers from misogyny (75% of those affected are female) and is cursed with the trivial name given it in the 80’s–Chronic Fatigue Syndrome*. The disease was promptly dubbed “Yuppy Flu” since many of the people involved in one of the first outbreaks lived in a wealthy area near Reno, Nevada called Incline Village. I recall reading about it on a plane home to Milwaukee, WI from a client meeting on the East Coast and thinking, “Chronic fatigue syndrome. Yeah, I’m tired, too.”

Those of us diagnosed with ME/CFS are often thought to have a psychological illness wherein the unremitting fatigue, brain fog, and muscle/joint pain are all in our minds rather than something biologically wrong with our bodies. Studies with limited numbers of participants or poor parameters abound in the literature on this disease. This leaves us with the stigma of an imaginary illness and few options for treatment.**

In the Newcastle study, researchers looked at energy-dependent cellular actions (oxidative phosphorylation, OXPHOS, and glycolysis). These are two ways cells break apart chemical fuel molecules to transfer energy in cellular respiration. There were many differences between the two groups, but because of the mitochondrial impairment inherent in ME/CFS cells, maximal respiration was found to be the key parameter that differed most.

The finding suggests that when our cells experience physiological stress they find it difficult to increase their respiration rate to compensate and therefore are unable to meet cellular energy demands. The researchers found this to be true under both basal (resting) conditions and when mitochondria are stressed during high metabolic demand. Researchers determined that PBMCs from people with ME/CFS could only produce about another 50% more energy from their cells when stressed, unlike control PBMCs that nearly doubled their output under the same conditions.

While this research looked at just one type of blood cell, it is another step toward linking our symptoms of muscle pain, fatigue and hampered cognitive functions with a legitimate, reproducible biochemical and physiological process. With the publication in late 2016 of Dr. Naviaux’s research and studies by the Chronic Fatigue Syndrome Research Center at Stanford (CFSRC) headed by Dr. Ron Davis, we are entering a new era in ME/CFS research.

 

 

*There is an ongoing debate about whether CFS and ME are the same disease. The two conditions are similar, but people with ME suffer from post-exertional malaise (PEM) while people with CFS do not. PEM is a period (lasting days, weeks and even months) of intense exhaustion and an increase in other symptoms following emotional, mental or physical exertion.

**ME/CFS has historically poor funding at the federal level. In past years the National Institute of Health (NIH) allocated fewer research monies to my disease than they did for studies on male pattern baldness. We also suffer from having different clinical diagnostic criteria, some broad enough to include people with depression. Due in large part to neglect by the medical industry, there are no FDA-approved or evidence-based treatments for ME/CFS.

Other articles based on recent research:

Differences in chronic illness between older and younger people

Is Functional Medicine a Viable Alternative?

Maximizing nutrient absorption from foods

New research confirms people with ME/CFS are exhausted at the cellular level