Charlotte CFS/ME/FM Support Group Newsletter
for March 11, 2012
Our meeting this month on Thursday, March 15, Jessica Peach, a Licensed Massage Therapist will be speaking to us about how to let go of some of your pain. There are a number of natural methods we can use to help ourselves without the use of medications. See how the natural way relieves pain by using some simple stretches to help us elevate pain from our aching bodies. She will encourage you to incorporate these stretches into your daily routine which will certainly help the quality of your life.
More details about our meeting place at Sharon Presbyterian Church, Sharon Rd., will be in the meeting reminder you'll receive week before the meeting.
Upcoming Meetings (Subject to Change)
· April 19 -- Caregiver's Meeting, guided by Dr. Lapp. Bring your spouse or caregiver (full-time, part-time), or supportive friend(s) and discuss issues that affect you both/all.
· May 17 -- George Piemonte , the Action Advocate, will discuss disability issues & answer your questions http://www.lawyer.com/george-piemonte.html .
· June 21 -- Recent CFS Videos on our "big screen"
· July 19 -- Luncheon at Panera's, Carmel and Pineville-Matthews Roads
· August 16-- Luncheon at Panera's, Matthews
Question: What Is the Cause of Chronic Fatigue Syndrome?
The more I research the cause of chronic fatigue syndrome, the more confused I get. Some studies say it's a virus, others say a stomach parasite, or genetics, or childhood abuse. What is the cause of chronic fatigue syndrome?
I can understand your confusion! It's true that research shows all of these things may contribute to chronic fatigue syndrome (ME/CFS). http://chronicfatigue.about.com/od/whatischronicfatigue/a/what_is_CFS.htm . And it's possible that many or all of them are correct.
How is that possible? use it's likely, according to many researchers, that ME/CFS is actually the result of multiple things in combination. Instead of thinking about "the" cause, we need to look at causal factors, which are things that may contribute in part to the development of the condition.
Making the situation even more complicated is the growing belief that not all cases of ME/CFS result from the same combination of factors.
Here are two examples:
Jim is diagnosed with ME/CFS. He developed it suddenly after an industrial accident exposed him to a large amount of potentially toxic chemicals. His worst symptoms, other than crushing fatigue, are orthostatic intolerance (dizziness upon standing) and cognitive dysfunction (brain fog.) His most successful treatments have included antidepressants and supplements that help brain function.
Jane is diagnosed with ME/CFS. She has a long history of viral infections with long recoveries. Then she woke up one morning feeling like she had the flu and never got better. Her worst symptoms, other than crushing fatigue, are a sore throat, digestive complaints and achiness all over her body. Her most successful treatments have included anti-viral medications, probiotics and massage.
These scenarios are quite possible under current criteria. In fact, it's easy to find examples like them.
Because of the wide variability in causal factors, symptoms and effective treatments, several researchers are working to identify subgroups that could group people with similar cases. It remains to be seen whether causal factors will play a significant role in subgrouping.
NOTE From Nancy: If you'd like to read more about causes, go to the link above and look down below this article by Adrienne for links to more info.
Read the latest in pain control and research from the Chronic Pain Connection
Low Dose Naltrexone Helps Fibro Pain
Katrina Berne, PhD
This author of books and articles on ME/CF and Fibromyalgia, also documented a long list of symptoms of ME/CFS/FM. For those of you who wonder why you have so many symptoms and are therefore deemed a hypochrondriac, fear not, you are indeed a part of the brotherhood who has also been thought to be hypochrondriacs. The following link will take you to a list of those symtpoms. Dr. Berne is a psychologist who is also ill with these disorders and knows them personally.
If you want to see other lists and explanations, refer to Dr. David Bell's book "The Doctor's Guide to CFS" that you can probably find in your local library along with Dr. Berne's books. If not, just check with Amazon.com and you may find one in the used section. I mention this for those whose resources are very slim.
Actually the list from Dr. Bell's book is listed on the www.co-cure.org web site at:
National Fibromyalgia Association Survey
For any FM patient who would like to participate in an FM survey, you can by go to the following link - and also sign up for future newsletters if you are not yet on distribution:
cognitive impairment in fibromyalgia linked to one factor: Pain level;
ProHealth.com; February 19, 2012, by
GA Reyes Del Paso, et al
Cognitive impairment in fibromyalgia syndrome: The impact of cardiovascular regulation, pain, emotional disorders and medication
– Source: European Journal of Pain, March, 2012
You can read other articles from HealthCentral - Chronic Pain Connection at:
Most Recent E-Newsletter from Dr. Teitelbaum
Topics include: Treating Candida, Neuropathy and Sleep Issues
for a wealth of information on ME (myalgic encephalomyelitis). I refuse to use the term cfs whenever I can get away with it.
The Symptoms of ME
This information is excerpted from the Nov 1999 issue of the Lyndonville Journal - a bi-monthly newsletter from Dr. Bell's medical office that preceded the Lyndonville News ( www.DavidSBell.com ). It offers still-relevant insights, as research to identify proper case definitions, potential ME/CFS subsets, and causes continues.
NOTE from Nancy:
Fellow patients with ME, if you have never read Dr. Bell's book "The Doctor's
Guide to Chronic Fatigue Syndrome", I urge you to either get one from the
library or purchase one. I just checked and you can get copies at Amazon.com
for $.01 plus S&A of $3.99 or you can buy a brand new one for $16.99.
Symptom Variation: Illness or Host?
Roughly 70% of the persons I see in the office have a pattern of symptoms that is "typical of" chronic fatigue syndrome (CFS). The remaining 30% have variations where doubt can be raised as to the diagnosis. This variation in symptoms is the main reason that researchers may see CFS as a variety of differing illnesses that produce fatigue as a symptom.... But I feel that the vast majority have a single illness, rather than CFS being a mish-mash of different illnesses. The issue here is the debate of illness versus host.
What exactly comes from the cause, and what comes from the host response? To look at this conflict, let us look at chicken pox.
Chicken pox is an everyday, run of the mill, simple illness. Every clinician makes the diagnosis with ease. You seen one chicken pox, you have seen a thousand. It is simple and it is one single illness. That is because it is an illness that affects a distant target organ - the skin. A five-year-old comes in with a fever and little blisters that look like a "dew drop on a rose petal." And that is exactly what a perfect chicken pox looks like. (I have no idea where the chicken part comes in.)
There may be some minor variations. A child may have 30 pox or 300. Some pox (or poxes?) may get infected or scabbed over. Big deal, it is still chicken pox, one illness. The host (or person with the illness) does not affect it much.
But wait. In some cases the host is critical and the illness can be different. Some people have chicken pox without a rash, or have a pneumonia, or worse yet, have a neurologic complication. Is it still chicken pox? Yes, because we are able to culture the virus from the lung or brain, and it is the same as the regular chicken pox in the skin.
In CFS we do not have this luxury. The situation is different.
Whatever CFS is, it affects a very central mechanism within the body, not an end organ like the skin. And this central mechanism, probably the brain, can manifest the symptoms of an insult very differently. With the brain, the same injury or illness causes a variety of symptoms. (Brain tumors, for example. The symptoms of a one-inch area of brain injury depend entirely upon the location of this injury. In one area, there may be minor if any symptoms. In another it might cause arm weakness, in another area, behavior or emotional symptoms.)
Let us suppose for one minute that a single neurotropic virus - one that affects brain tissue - causes CFS. If this virus affects only a small part of the brain, the symptoms will be uniform (post-encephalitic Parkinson's). But if it affects more than one area, then a multitude of symptoms may result, with clear variations from person to person (Post polio syndrome). The issue is the competition between agent specificity and how the host responds to it (host versus illness).
The enormous complexity of both genetic and environmental factors makes people different. By itself, this is an interesting discussion, and probably a good thing. But science would be easier if we were all clones. (We would probably get along better as well.) The complexity of host response, differences in immunity, emotional vulnerability, and environment makes it so that the same injury may cause a variety of responses, particularly if that injury is to a central or primitive part of the brain.
In CFS, we can trace the symptoms to this primitive part of the brain where hormones are produced, where sleep and alertness are regulated, where blood pressure and heart rate are controlled, where pain is modified.
One person with CFS may have asthenia [lack of energy and strength] as the worst symptom. In another, pain is the worse symptom. Are these two illnesses, or are they the same?
The answer is seen not by looking at one or two symptoms, but by examining the entire symptom pattern. For now, it is reasonable to define CFS broadly without being picky. A clinical, symptom-based diagnosis is appropriate, with the understanding that other fatigue-causing illnesses have been excluded. The pattern of symptoms rather than the specific worst symptom defines the diagnosis. And this pattern may vary from person to person. I do not see this variation as due to differing illnesses. Rather I see the same illness having differing host responses.
The roots of my bias are easy to spot.
In Lyndonville, many persons developed severe fatigue and other symptoms due to something. Because this took place in an isolated rural community, I feel that it must have been a single event. [The 1985 'Lyndonville outbreak' of CFS affected 210 persons, 60 of whom were children, a patient group that Dr. Bell continues to track.(1)] I do not think that 15 different cause of CFS hit all at the same time. For this reason, the variation of symptom severity and even emphasis must be due to host responses rather than cause.
Two children in the same family become ill: One has acute onset, one gradual; one with fatigue as the worst symptom, one with headache. But it is too much of a coincidence that these would be different illnesses within the same family at the same time.
As an aside the CFC has stated that CFS does not run in families. This is because all may not fit the CDC research criteria. But most clinicians feel that there is a clear familial component. If three family members develop chronic fatigue at the same time, host response is more likely to explain the differences in symptoms than the possiblity of separate illnesses.
At the time of the CFS 'outbreak' in Lyndonville, there were those with viral infections that caused two months of fatigue. Lucky individuals. And there were siblings who got full-blown CFS. My hunch is that it is the same initiating event expressing itself differently in separate individuals.
We will know the answer to host versus illness only when an an underlying cause is known in a few persons. Then we can see if the others have evidence of the same underlying cause. This was the case with HIV infection. Some persons would have cancer, some bad pneumonias. Only when a specific initiating event was found was it possible to understand the full spectrum of HIV infection.
So now we have to wait. We can create a definition, and start from there. It is my hunch that we will soon define appropriate subgroups of CFS. And it remains to be seen whether these subgroups are artificial or will accurately define different causes of CFS.
But until this occurs, persons with CFS should not be denied appropriate diagnosis, treatment, or disability benefits if warranted. The definition of CFS now must be broad. Whether due to host response or initiating cause will be answered eventually with research.
I am going to put my money on:
• A few different
• Causing a specific physiological injury,
• In persons with varying host response.
And I keep wondering why I am broke.
- Dr. David S Bell, MD, FAAP, Nov 1999
1. See Dr. Bell's presentation on his tracking of the Lyndonville outbreak patients ("25 Year Follow-up on Chronic Fatigue Syndrome: Rising Incapacity,"), delivered Apr 16, 2011 as part of the Massachusetts CFIDS/ME & FM Association's lecture series. (Allow ample time for the video download.) He discusses symptom variation, and theorizes that 'fibromyalgia' is a term people use when they're able to be up and around, but their pain is considerable.
See Dr. Bell’s website to sign up for its e-successor, the Lyndonville News (www.DavidSBell.com).
From Adrienne Dellwo, your Guide to Fibromyalgia & Chronic Fatigue Syndrome
I've been sick for the past week with some kind of throat virus, on top of a digestive issue, on top of possible drug side effects, on top of fibromyalgia, etc. What a mess! Look at the issues catching some random bug can pose for us, in the top spot this week.
Also below: treating pain through the brain's immune system?; help for those newly diagnosed with chronic fatigue syndrome; and a great conversation stemming from last week's post on the idea of singular causes for our illnesses.
Down in Featured Articles, I've included some content to help you with spring and the issues it brings. You'll find some basic information on the right, to help you learn or give you a brush-up (because you know we all forget this stuff after a while!)
Take care of yourself!
Note from Nancy: This e-newsletter from Adrienne has some excellent articles. Hope you get a chance to check them out.
Autonomic nervous system (ANS) dysfunction is a common feature of CFS, and can cause symptoms in virtually every organ system. Circulatory symptoms include lightheadedness, cold hands and feet and palpitations or “anxiety.” In the digestive system, autonomic dysfunction can cause nausea, cramps, constipation, diarrhea and bloating. Autonomic dysfunction can also cause abnormal breathing and urinary patterns, and problems with balance and even vision. To continue reading this article: