Charlotte CFS/ME/FM Support Group Newsletter

for April 5, 2013

 

Hi Everyone,

This is an extra newsletter due to my hard drive being replaced Saturday so I wanted to make sure these got published and not lost like so many do for one reason or another.  Or perhaps you've already seen some and for that I apologize.

No info yet on this month's meeting.

 

Nancy

 

Chronic Fatigue Syndrome: Hidden in Plain Sight
MARCH 30, 2013 6:26PM

By Llewellyn King; Note from NancyYou can catch Llewellyn King's reports on U-Tube.

I am a reporter and my beat is hell. But it is neither the eternal
hell of the Bible, nor Tartarus, the ancient Greek underworld, where
the gods of mythology locked up their enemies.

The hell I write about is more prosaic: It is here and now. It is the
hell of those who live with a disease that is incurable, has
inadequate therapies, indifferent government attitudes, social stigma
and no strong public voice.

The disease is Chronic Fatigue Syndrome (CFS), a benign name for a
malignant condition. Patients prefer that it be called by its old
name, and the one used elsewhere in the world, Myalgic
Encephalomyelitis (ME). But they are stuck with CFS because that is
what the Centers for Disease Control named it when following
investigation of a Nevada outbreak that sickened 300 people in the
1980s.

After more than 50 years in the newspaper trade, I chanced upon CFS –
which, in my opinion, is the great under-reported medical story of the
times -- through a friend and colleague who had been felled in her
prime and has suffered relentlessly for 23 years. For two of those 23
years, she was so sick that she could only lie in a darkened room on a
couch, which she sometimes thought was her coffin.

I wrote one column and was besieged with e-mails of gratitude; notes
that began with “thank you” and ended with “bless you.” Journalists
are not used to this kind of thing; instinctively, they suspect a
trick.

Fatigue that is not alleviated by sleep -- official symptom No. 1 --
is just the first circle of hell for CFS victims. That does not
communicate the terror of helplessness patients report from losing all
their abilities, energy and strength – losing the very life force that
makes a person both human and alive.

The disease attacks the brain. Patients suffer mental fog and memory
and concentration losses, as well as cognitive problems such as
aphasia and dysphasia (language problems). This may reflect infection
or immune system activity in the brain.

Patients commonly are tormented by pain – by bones that feel as though
they will explode, by migraine-type headaches, by extreme sensitivity
to light and sound. Stomach upsets abound and can only make worse the
problems of generating energy, which so often lead to complete
physical collapse. Some patients are bedridden for years. Some of my
correspondents tell me they pray for death to end their suffering.
There are many recorded suicides.

Inability to function for more than a few hours a day is common among
those who are in what might be called remission – periods when not
confined to bed and well enough to function in a limited way. Others
respond to some antiviral drugs prescribed by adventurous physicians.
The body of opinion is that CFS is viral disease, but no virus has
been isolated. Men afflicted with it fare better than women.

 

To continue reading this article, go to:

http://open.salon.com/blog/llewellyn_king/2013/03/30/chronic_fatigue_syndrome_hidden_in_plain_sight

 

The following are some articles that got lost in the shuffle when I had my first eye surgery.

Farewell from the Fibromyalgia Network

Everyone with fibromyalgia knows what if feels like when doctors dismiss their symptoms or when job demands become too overwhelming to stay employed. Your life’s work is on the line, but the system is not designed to care.

For 25 years I’ve been writing articles for Fibromyalgia Network, hoping the information would help you better understand this illness and empower you to receive the proper treatment for it. Somewhere along the way, the Network became my life’s mission. While I know it is not healthy to have one’s self-worth wrapped up in a job, my writing has never been a job to me. I love reading the research papers and reporting on all things fibro.

During the first few months of 2011, I began experiencing neurological symptoms that were diagnosed as a mild form of epilepsy in June of that year. I was placed on anti-seizure medications and began to feel much better. Then my unusual symptoms reappeared in 2012. Adjustments to my treatment helped for a while, but recently I have gotten progressively worse.

Inability to get help for my ongoing neurological illness has left me with no other choice than to shut down the Network. I wish I could promise you that I would be better in six months, putting the Fibromyalgia Network on “pause” and just picking it up where I left off. But I have no idea if (or when) I will get my function back, and have never been successful in finding or training someone to write the articles. Thus, the Fibromyalgia Network will not be publishing any more editions.

I am trying to do what I can and plan to provide additional information on this website as it becomes available. In the meantime, please feel free to visit the Network’s Facebook page. Rest assured that our strict privacy policy will remain and your information will never be sold.

Thank you for all of your years of support and feedback. I particularly want to express my gratitude to those of you who worked with me on the six-year grassroots advocacy campaign during the 1990s to get research funding for fibro at the National Institutes of Health. I feel as though we have been through a lot together and you have helped make the Network such a success since 1988.

Wishing you the very best,

Kristin Thorson, Editor

 

 

From Co-Cure

Self-Help Course Registration Deadline Mar 11

The CFIDS & Fibromyalgia Self-Help Program is currently accepting signups for the spring session of the CFIDS & Fibromyalgia Self-Help Course. The course, which begins March 18, is a 7-week email discussion group that focuses on practical strategies for managing common problems of CFIDS and fibromyalgia. The cost of the course, which includes a copy of "Managing Chronic Fatigue Syndrome and Fibromyalgia: A Seven-Part Plan," is $30.
Visit our website to learn more and to register: "www.CFIDSselfhelp.org" .

Bruce Campbell, Director
The CFIDS & Fibromyalgia Self-Help Program

NOTE:  Dr. Lapp has worked with Bruce in developing this course in past years. In fact, a few years ago, Dr. Lapp went thru this course with our group.

 


Me and Dr. Chia: ME/CFS Visits Dr. John Chia for enteroviral treatment by Cort Johnson (phoenixcfs@gmail.com )

Dr. Chia is different...An infectious disease specialist, who has been probing into and treating ME/CFS patients for over 20 years, he believes that enteroviruses are the cause of ME/CFS in many cases. In 2008 he reported 80% of stomach biopsies of ME/CFS patients tested positive for these bugs. .

There are no FDA approved drugs for enteroviruses but Dr. Chia has produced his own herbal preparation that he reports works in many of his own patients and enabled his own son to fully recover.

Follow Christine as she reports on her progress with this unique practitioner in

ME and Dr. Chia: A Chronic Fatigue Syndrome Patient Visits Dr. Chia at:


http://www.cortjohnson.org/blog/2013/02/23/me-and-dr-chia-chronic-fatigue-syndrome/

 

Also from a recent Co-cure Digest:

Date: Sun, 3 Mar 2013 18:41:04 -0500
From: Cort Johnson <phoenixcfs@GMAIL.COM>
Subject: MED, RES, ACT: Secretary of Health and Senate Majority Leader Meet About ME/CFS

It's not often that the Secretary of Health and the Senator Majority Leader
meet to talk about ME/CFS but during Bob Miller's hunger strike that's just
what happened. Check out Secretary of Health Sebelius' written reply to
Senator Reid's concerns regarding her departments commitment to ME/CFS at

http://www.cortjohnson.org/blog/2013/03/03/secretary-of-health-sebelius-responds-to-senate-majority-leader-harry-reid-on-chronic-fatigue-syndrome-mecfs/

 

Secretary of Health Sebelius Responds to Senate Majority Leader Harry Reid on Chronic Fatigue Syndrome (ME/CFS) by Bob Miller on March 3, 2013

We thank Senate Majority Leader Harry Reid for his longtime work and support for the ME/CFS community, and especially for his recent efforts with the Secretary of Health to stress the serious unmet need in the ME/CFS community and the drastic implications of the FDA's denial of the only medicine in clinical... continue:

http://www.cortjohnson.org/blog/author/bobmiller/

 

Finally! A Diagnostic Blood Test for Fibromyalgia from the Chronic Pain Connection

The FM test, the first test to objectively diagnose fibromyalgia via a simple blood test, measures cytokines in the immune system.

Go to the following web site to read more about the blood test and other important pain issues.

http://www.healthcentral.com/utils/newsweb/chronic-pain/news-sp.html

 

Link between ME/CFS, Lupus, Fibro, etc.

http://www.envita.com/lyme-disease/finally-one-link-established-chronic-fatigue-syndrome-cfs-lupus-fibromyalgia-autoimmune-disease-chronic-lyme-disease/

 

ME-CFS Research -NIH awards $2 million to 3 NYC Institutions

https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1303B&L=co-cure&P=R1046&1=co-cure&9=A&J=on&d=No+Match%3BMatch%3BMatches&z=4

 

Finally, One Link Established: Chronic Fatigue Syndrome (CFS), Lupus, Fibromyalgia, Autoimmune Disease And Chronic Lyme Disease

An Easy Explanation To Idiopathic (Unknown Cause Of Disease) But Is It The Right One?

Idiopathic disease is defined as one that develops without any apparent or known causes. That is the term used for fibromyalgia, autoimmune diseases, including Lupus and Chronic Fatigue Syndrome. While many of these diseases have recognizable signs and symptoms, the lack of causality haunts medical schools, doctors, practices, and hospitals. The only one benefitting from the lifelong symptom treating associated with Chronic Fatigue Syndrome, Lupus, Autoimmune disease, or Fibromyalgia are the pharmaceutical companies who sell billions in medication to treat them. A long list of pain medications, sleep-aids, anti-depressants and anti-inflammatories is not sufficient because the diagnosis is incorrect. So let’s look at what the possible causes are to these diseases.

Go to following link to see video and other info:

http://www.envita.com/lyme-disease/finally-one-link-established-chronic-fatigue-syndrome-cfs-lupus-fibromyalgia-autoimmune-disease-chronic-lyme-disease/

The video is an overview of Fibromyalgia symptoms below we explain

Here Is The Conventional Scientific Overview Of What Causes (Chronic Fatigue Syndrome) CFS And Fibromyalgia

Below, is a quick list of causes and we will give a clinical review and explanation as to what takes place.

1.   Brain abnormalities

2.   Genetic factors (HPA) axis

3.   A hyper-reactive immune system

4.   Viral or other infectious agents like (Chronic Lyme disease Complex)

5.   Psychiatric or emotional conditions

Are Genetics To Blame? Fibromyalgia And Chronic Fatigue Syndrome

Chronic Fatigue Syndrome and Fibromyalgia have been linked with genes involved in the hypothalamic-pituitary-adrenal axis and the sympathetic nervous system. These genes regulate response to trauma, injury, and other stressful events. 10 years of Envita’s clinical experience shows that while such traumas could play a role in the etiology (the trigger to exhibiting symptoms) of the disease, they are not likely the causes of these conditions.

What is the HPA (Hypothalamic-pituitary- adrenal axis)? Does Lyme Disease Play a Role?

HPA makes up a multi-set of direct influences and feedback interactions among the hypothalamus, the pituitary gland (a pea-shaped structure located below the hypothalamus), and the adrenal, also called “suprarenal,” glands which are small, conical organs on top of the kidneys.

The interactions among these organs constitute the HPA axis, a major part of the neuroendocrine system that controls reactions to stress and regulates many body processes including digestion, the immune system, mood, emotions, sexuality, as well as energy storage and expenditure. Infectious disease, such as chronic Lyme Disease Complex, impacts the HPA-axis via neurotoxins that compete for the same receptor sites used by the HPA-axis. In fact, such infections can bring about identical symptoms of some idiopathic diseases listed above and many of the symptoms associated therewith. This should bring our attention to the Lyme Disease Complex, which is composed of a number of infections and neurotoxins that bring about even more symptoms than those listed earlier in this article.

Does HPA Affect Fibromyalgia And Chronic Fatigue Syndrome?

Abnormal levels of certain chemicals regulated in the HPA axis area of the brain system, have been proposed as a cause of Chronic Fatigue Syndrome and also have some influence in Fibromyalgia. This system controls important functions, including sleep, stress response, and depression. Of particular interest to researchers, are the chemicals and other factors listed below that are controlled by the HPA axis.

The HPA axis is involved in the neurobiology of mood disorders and functional illnesses, including anxiety disorder, bipolar disorder, insomnia, post-traumatic stress disorder, borderline personality disorder, ADHD, major depressive disorder, burnout, chronic fatigue syndrome, fibromyalgia, irritable bowel syndrome, and alcoholism. Antidepressants, which are routinely prescribed for many of these illnesses, serve to regulate HPA axis function. All of these conditions and their symptoms are commonly seen in Chronic Lyme disease patients that contain a host of infections and neurotoxins that block serotonin receptors in the brain.

How Can Chronic Lyme Disease Complex Or Infectious Disease Affect HPA?

Patients may have contracted an infection at any point in their life-time; however, the symptoms of Chronic Lyme disease Complex or its co-infections may remain unseen or dormant until the individual is weakened by a trauma or trigger. This could be anything from child birth or a car accident to the death of a loved one, a divorce, or even a vaccine as seen among children with weakened immune systems.

In the etiology of chronic infectious disease, the traumatic event is a trigger but not the cause of autoimmune disease, Chronic Fatigue Syndrome, or Fibromyalgia. Nevertheless, treating these triggers is critically important to the new patient’s care. What we find is that infection and not genetic defects are at the root of HPA axis disruption in the brain itself.

The Major Impact of Epigenetic Changes

A number of studies have found that alterations in genes are caused by infections involving immune function, intercellular communication and energy transfer.

Researchers have identified many different genes in patients with Chronic Fatigue Syndrome that relate to blood disease, immune system function, and infection. However, despite these identifications, there is no clear pattern to them and it is quite possible that it is the infections alone that are altering these genes and are responsible for impacting mental and emotional health as well. It is very possible that the infections can alter these genes that impact mental and emotional health as well.

Important Neurotransmitters Changed By Neurotoxins Competing For Receptor Sites

Some patients with Chronic Fatigue Syndrome have abnormally high levels of serotonin – a neurotransmitter (chemical messenger in the brain), and also show deficiencies in dopamine – an important neurotransmitter associated with feelings of reward. In some cases there is also a demonstrable imbalance between norepinephrine and dopamine.

A number of studies on Chronic Fatigue Syndrome have shown patients with lower cortisol levels, a stress hormone produced by the adrenal glands. It has been suggested that such cortisol deficiencies are responsible for Chronic Fatigue Syndrome patients having impaired or weakened responses to psychological or physical stresses like worry, infection, or exercise. However, administering replacement cortisol improves symptoms only in some patients. Why? Infection and their toxins (neurotoxins) must be cleared before hormone replacement can begin to be effective in these patients. It is also common for these patients to have thyroid, testosterone and cortisol issues.

Idiopathic Diseases Are At The Root Of Many Psychological Disorders: Sleep disorders Explained

Evidence suggests that certain CFS, Fibromyalgia, and Autoimmune patients have disturbed circadian rhythms (disorder of the sleep-wake cycle), which is regulated by the so-called circadian clock, a nerve cluster in the HPA axis. These are commonly seen in Lyme Disease Complex along with a number of other neurological symptoms.

A mentally or physically stressful event, such as a viral infection, may disrupt natural circadian rhythms. An inability to reset these rhythms results in a perpetual cycle of sleep disturbances. Medications that improve sleep can be very helpful for certain patients with Chronic Fatigue Syndrome, Fibromyalgia, and Autoimmune diseases. But, until the infections are cleared and hormones are rebalanced, long-term improvement is unlikely.

Psychological, personality, and social factors are strongly associated with Chronic Fatigue Syndrome, Fibromyalgia, and Autoimmune disease like Lupus. There is a distinct complex relationship between physical and emotional factors.

What Specific Infections Are Responsible

Because most of the features of Chronic Fatigue Syndrome resemble those of a lingering viral illness, many researchers have focused on the possibility that a virus or some other infectious agent, in some cases, causes the syndrome.

At Envita, we have clinically determined that these patients usually have a group of viral, bacterial, parasitic, and fungal infections that make up what we call Lyme Disease Complex. Some patients may or may not have actual Lyme disease but may have another type of tick-borne illness along with a host of co-infections that have brought about immunological, hormonal, and neuroendocrine changes.

Still, not all Chronic Fatigue Syndrome patients show signs of infection. And although experts have long been divided on whether infections play any role in this disorder at all, it does seem clear that subtypes of both viral and non-viral Chronic Fatigue Syndrome exist. That being said, researchers have seemingly overlooked the complexity of mute-infections, multi-toxins, and heavy metal components that complicate these conditions making them extremely difficult to diagnose on a case to case basis. When a complex of infections exists, they can affect the activation and replication of each other via biofilm communities. To be certain, most patients are never tested thoroughly and correctly for all the infections that make up, chronic Lyme Disease Complex.

Infections, Looking More Like The Cause

The theory for Chronic Fatigue Syndrome having a viral cause is not based on hard evidence, rather, on an ever-growing series of observations that suggest this association:

Chronic Fatigue Syndrome as well as Fibromyalgia and Autoimmune disease patients are often found with elevated levels of antibodies to many organisms that cause fatigue and other Chronic Fatigue Syndrome symptoms. Such organisms include those that cause Lyme disease, Candida (“yeast infection”), herpes virus type 6 (HHV-6), human T cell lymph tropic virus (HTLV), Epstein-Barr, measles, coxsackie B, cytomegalovirus, or parvovirus.

Many of these infectious agents are very common; however, none have emerged as a definitive cause of CFS. Well-designed studies of patients who met strict criteria for CFS without any known cause have not found an increased incidence of any specific infection(s).

In up to 80% of cases, CFS starts suddenly with a flu-like condition. In the U.S., there have been reports of cluster outbreaks of CFS occurring within the same household, workplace, and community (but most have not been confirmed by the Centers for Disease Control and Prevention). However, most cases of CFS occur sporadically in individuals, and do not appear to be contagious. These all have the pattern of infections and more importantly, complexes of infections taking over the patient’s immune system, which is clearly seen in the depressed CD57 markers found in almost all of this population.

Infection Complexes Leading To Immune System Abnormalities And Immuno-Compromised States

CFS is sometimes referred to as “Chronic Fatigue Immune Dysfunction Syndrome.” In many cases, studies have detected many immune system irregularities. Some components appear to be over-reactive, while others appear to be under-reactive, but no consistent picture has emerged to explain CFS as a disease of the immune system in conventional medical practices. Chronic Lyme Disease patients almost always have depressed CD57 marker called the striker panel and this is almost never run on chronic fatigue patients when they go to their doctor. Almost 100% of the time we find decreased key immune function in all CFS patients because we are running the correct diagnostics.

Environmental Toxins Impact Chronic Fatigue Syndrome And Fibromyalgia

Some studies have reported that a majority of CFS patients have allergies to foods, pollen, metals (such as nickel or mercury), or other substances. One theory is that allergens, like viral infections, may trigger a cascade of immune abnormalities leading to CFS. However, most allergic people do not have CFS. In our clinical setting, patients often have pesticide, heavy metal and chemical toxicity along with chronic infections which explains the abnormal and inconstant responses to allergies. Environmental toxins complicate these conditions and require targeted treatments to overcome them.

Autoimmunity Overlaps With Other Conditions

The risk profile for CFS is similar to the risk profiles for a number of autoimmune diseases. Studies are inconsistent with regards to the presence of auto-antibodies (antibodies that attack the body’s own tissues) in CFS, so the disease is unlikely to be due to auto-immunity – making it more likely connected to infectious disease. In Lyme disease patients, we typically see that the patient was diagnosed at one time or another with several autoimmune diseases but almost certainly the previous physicians were confused.