Update on My Health and Summary of CFS Conference

Hope by Emily Dickinson

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,

And sweetest in the gale is heard;

And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

I was so glad to have such good energy for about a good 3 weeks in August going in to September. I can't even recall the last time I had such consistency. I got really discouraged last week when I woke up with swollen glands, soar throat, and very lethargic. I am glad to say though that this is a one time occurrence since being off valcyte the past three months. Thankfully this only lasted two days. My acupuncturist helped me out, suggested some herbs and gave me “emergency” treatments. I would say now that I have a lot of so-so days combined with good days as opposed to mainly bad days when I was on valcyte.

I'll confess I'm impatient and have even been, I hate to say, discouraged. It has been such a long year and three months, plus pre-valcyte I was not doing well. This past weekend I was not doing well and in a funk and just tired of it all. Sick and Tired of being Tired I call it! My mom got on immune support and read an account of a gentleman who was on valcyte for 7 months. He said six months after being off valcyte would not be a fair place to judge how it had helped him. A year has passed now since he stopped valcyte and he his biking 8 miles a week! He said he has improved 80-90%. Another person on valcyte said although she had cognitively improved 100% at 6 months post-valcyte, and said it would not be a fair place to judged if the drug had helped her over all at a 6th month post valcyte marker. She had seen improvement in energy too. I was so glad to hear this. I needed that hope to hold on to. As I've thought about these two patients I realized how greatly my cognitive function has improved. I've read 3 novels in the past month. I can sit down at the piano and read difficult music. On good days I can play and sing for 45 minutes. In December I tried to read accounts of Christ's birth from Matthew and Luke, but I gave up because of the brain fog and fatigue I felt. Now I read from the Bible or Book of Mormon(another testament of Christ) several times a week. I constantly have to remind of myself of these things.

A quote from my doctor Lucinda Bateman from a recent article she published says it well "...The patients who do best over the long term are those who build their emotional resilience. They develop insight. They learn how to get out of an emotional slump or calm paralyzing fears. They learn to get back up and take one step forward." several excellent articles including the one I just used the quote from.

I have stopped telling people I have CFS. I tell them I have a virus attacking my central nervous system. Dr. Montoya calls it Virally Induced CNS dysfunction. They ask what exactly it is and I tell them it has caused complications with my heart (orthostatic intolerance and POTS) my stomach intestines, fatigue, and muscles, ect. Then they say "I've never heard of that before, wow!" Actually they have heard of the illness before; it's called Chronic Fatigue Syndrome but that is the most degrading name for this illness and there is negative cogitation associated with it so I refuse to tell them it is also called CFS. It would be like a diabetic saying "I have Chronic Urination Disease". The last thing I need at this point in my life is to have ignorant comments made, and I’ve had many made as does everyone else with CFS, and judgment so I refuse to tell them I have CFS. I just want support and respect and I'm not doing this for attention. I'm a musician and I've done lots of theater. If I wanted to be the center of attention I go be in a production of the Sound of Music. The other day I was at an young adult church activity and this girl asked me if I was going to school and I told her no and she immediately went on to the girl next to me and asked her if she was going to school and she was and they chatted up a storm. I just figure it's here loss if she doesn't want to get to know me and I'm still a person of worth. Worth isn't based on an achievement resume that you whip out every time you're in the social arena. And when I’m around people my age and they start complaining about how many tests they have and how they are stressed out about school and work, ect. I just want to grab their face in my hands and plead with them to be grateful for their healthy bodies and energy and highly functioning, clear brain they have and to do all these things. Of coarse I'm envious because I want to be able to do all those things and those are their concerns and mine are about how I'm going to make it through the next day and without agonizing so much about the future and what's going to happen to me. Will I ever get better and how long is it going to take? Is the valcyte going to work? I'm I ever going to be able to go to school again and do what I love? I'm I going to get worse over time? Will I ever talk to my best friend again and will she ever understand? I know anyone out these with a long term illness asks the same questions, feels the same way and I write these things to represent the CFS community. I'm working on how to cope with these situations, suggestions are welcome from my fellow CFS community friends.

One of my favorite people to be around actually has a rare disease called Wolframs. He has diabetes, is legally blind, and probably will die in his 30's because it's a degenerative disease. Somehow his maturity is impaired so he is child like. He is very smart and funny. We hang out a lot and he is so optimistic and confident, non-judgmental. When I with him I forget about my problems and I enjoy being his company.

I am thinking about going to Washington D.C. where the CFDIS Advisory Committee is meeting with the Department of Health and Human Services to advise them to get awareness out research, ect. CFS patients are urged to attend and give a 5 minute Public comment. This will be held at the end of the month and if I attend I will be sure to write about it.


I went to a great half day conference 3 weeks ago that was put on by my doctor's organization OFFER. There were 4 great speakers. Daneen Akers is the daughter of an FMS patient and she and her husband produced a documentary film called "Living With Fibromyalgia". I didn't get a chance to see the film and the DVDs were sold out, but I hear it is excellent. Dr. N. Lee Smith the director of the Lifetree Pain and research center gave a great talk on Fibromyalgia. His clinic offers a 6 week stress management course and most insurance companies will cover the whole cost.

Dr. Bateman talked about Updates in the Diagnosis and treatment of CFS. She mentioned Stanford Valcyte Trial. Results are still to be announced. The part that stuck out the most for me from Dr. Bateman's remarks was research funding. There are 2,400,000 people in the US with breast cancer. the NIH spent $690 million on Breast cancer research. The Susan G. Komen Foundation lists contributions of $242 million, with end of year cash: $184 million. Muscular Dystrophy is classified as a "rare disease" affecting less than 200,000 of USA population. In September the Jerry Lewis telethon raised $65 million for the Muscular Dystrophy Association, 1.2 million more than last year. According to CFIDS.org 1 million Americans are affected by CFS. Federal funding through NIH for CFS was $3-7 million/year. CDC(intramural research teams) $5 million/yr which was down from $9 million in 2005. The CFIDS Association of America set a goal to raise $1 million for direct research funding. They have been working so hard to do this and I just received an email this week informing that they had reached their goal. A lot of awareness has gotten out for Fibromyalgia because of two new drugs that have been approved for it Lyrica and Cymblata. Unfortunately not much for CFS has been done. More people are affected by CFS than Breast Cancer and Muscular Dystrophy. The money they have to do research is hardly anything. Research takes millions of dollars to fund. There are some people and politicians, who love to hate pharmaceutical companies because they take up so much money, but it costs so much to do studies for drugs. It has been hard for me going into stores and seeing M&M and even Salad packages with Breast Cancer Awareness written across. Not to demean cancer but people with CFS suffer just as much and need and deserve the funding and awareness. I would be awesome if we could organize a marathon to raise money and have a family member or fried sponsor the CFS patient and run for them. Any ideas on how to raise money?

There was a presentation that was so interesting and hopeful given by University of Utah researcher Kathleen Light about biomarkers that could be a new and better way to diagnose CFS/FMS. There were notes given along with the conference and I'm going to copy from them. Email me if there is a problem with me posting this.

New Hopeful Biomarkers in CHRONIC FATIGUES & FIBROMYALGIA SYNDROMES


Genes
Genes are likely to be involved in 2 ways.1. Genes (the kind you inherent from your parents) may give you a constitutional vulnerability but you may not know it for years. Then you may be exposed to some life event (infection, traumatic accident, major life stressor) that influences gene expression (turns on specific genes) and triggers onset of worsening of symptoms. 2. Challenges like exercise also influence gene expression, sometimes for better and sometimes for worse.

Sensory Pathways Involved in Muscle Pain and Fatigue (even in Healthy People) Are Still Not Understood
Pain from skin damage (cuts, poking or pinching the skin) has been studied a great deal and the nervous system pathways are fairly completely known.
Pain from working muscles that are obviously damaged is something we all have experienced, but the pathway involved are only recently beginning to be documented. Likewise, we have all experienced muscle fatigue, and like pain, this is a vital protective sensory experience, but there is even less known about the pathways involved.

Paradox in FMS and CFS
Gradual increases in whole body exercise is one of the most effective treatments to slowly reduce symptoms and normalize function, yet exercise even at moderate level causes worsening of pain and fatigue symptoms in these patients at 24 and 48 hours later, and sometimes much longer.

Legal and Scientific Considerations of Exercise Stress Test-- Margaret Cocolella, EdDJournal of Chronic Fatigue Syndrome 2007, 14:7-23
A standardized bicycle exercise protocol to at least 85% of predicted maximum heart rate was repeated twice 24 hours apart in 6 CFS patients and 6 normal controls. Expired gases were collected throughout the test so that the following values could be determined: Peak oxygen consumption, oxygen consumption at anaerobic thresholds, peak respiratory quotient, and percentage of age-predicted maximum heart rate.
Controls showed only 2-3% change in oxygen consumption from Test 1 to Test 2 while CFS patients declined by an average of 22-27%. Based upon the premise that test-retested variability should not exceed 8% this study indicated significant metabolic capability 24 hours after initial exercise test in CFS patients.
This is at the same time period when CFS and FMS patients report increases in muscle pain and fatigue even at rest or during simple movements.
We ask: can we find blood-based bio markers that are associated with this exaggerated delayed onset muscle pain and fatigue in CFS and FMS patients?


Why Look for Blood based Biomarkers?
Tender point exam requires hyper-sensitivity to pressure at 11 of 18 points to be diagnostic. Many patients experience chronic wide-spread pain without hyper-sensitivity, or have fewer tender points on some medical visits. Like all self reports, these can be based.
Blood based diagnostic measures are traditional in medical practice, and are considered objective, hard evidence.
Avoids legal concerns about subjectivity, malingering or biases from secondary gain 9insuarnce or disability).

Recent Research on sensory Pathways Shows How we Sense Muscle Fatigue and Pain
Alan Light and his research team (2008) recently reported a series of studies in animal models clarifying that at least 2 or more types of molecular ion channel receptors must be activated together to detect muscle fatigue and pain. They detect acid, especially lactic acid, and ATP produced by muscle activity(even low level activity) Can we determine if one or more of these ion channels receptors is functioning abnormally in CFS and FMS?

White blood cells also know as leukocytes
1.Are involved in immune and inflammatory responses.
2.Express receptors of many kinds, including ion channel receptors that appear to sense muscle pain and fatigue
3. Are carried throughout the body, having contact with all tissues including muscles and connective tissue, and all of the nervous system including the brain
4. When a series of blood samples are taken from the same person the numbers of ion channel receptors on leukocytes can increase or decrease dramatically.
We believe that very large increases in these receptors could lead to sensations of muscle pain and fatigue even when the muscles are not working hard.

Our R21 Pilot Study Uses 5 Blood Samples before and Up to 48 Hours After Moderate Exercise to Examine Possible Dysregulation of Adrenergic and Sensory Receptors and Cytokines
Current Sample: 20 CFS patients (15 also had Fibromyalgia, 5 only with CFS, tested off pain meds) and 15 healthy controls. They hypothesized
Do CFS patients show greater increases than Controls in ion channel receptors on white blood cells after 25 minutes of whole body exercise to 70% of age-predicted maximum heart rate (less strenuous than Ciccolella study)?
Are these differences maintained at 24 or 48 hours after exercise, when muscle pain and fatigue worsens?

Thesis
The same mild exercise task to achieve the same level of heart rate and blood pressure may have very different effects in patients with CFS and FMS versus healthy, pain-free individuals.

Results
Beginning at 30 minutes after exercise and continuing at 8, 24, and 48 hours after exercise, patients with FMS as well as CFS increased one ion channel receptor (type a believed to be sensitive to muscle pain and fatigue) 2 times its pre-exercise level and increased one ion channel receptor (type p believed to be sensitive to fatigue from animal study) 4 times it's pre-exercise level. Healthy subjects showed no change. Both CFS and FMS patients also showed increases in receptors that detect sympathetic nervous system activity (adrenergic receptors) that were 2-6 times their pre-exercise levels. recent animal studies by Alan Light and Jon Levine have indicated that injecting muscles of rats with propranolol (which blocks beta adrenergic receptors) reduces their pain responses 1-7 days after they are injected with a substance causing inflammation. Kathleen Light and William Maixner also found that very low dose propranolol led to reductions in clinical pain in FMS and TMD patients.

Those patients who were involved in exercising on a regular basis showed some reduction in their post exercise increases in these ion channel receptors and in their beta adrenergic receptors, although they were still higher than normal. This may be one way that exercise training helps reduce pain and fatigue symptoms.

Correlation of Fitness/Symptoms with Cytokine
Among CFS Patients, those who were higher in fitness (which overlaps with being lower in fatigue and pain symptoms) had lower anti-inflammatory and pro-inflammatory cytokines, especially at the 8 hour post-exercise time point. There was an association between having more normal ion channel receptors and more normal cytokines.

Yes, there appears to be "Light at the End of the Tunnel"
Now have hope that these post exercise blood-based measure can help us develop bio markers for CFS and for FMS. They also offer clues as to possible targets for future interventions to reduce muscle pain and fatigue.
Caveat: We still need to know if these patterns of responses are specific to CFS/FMS but may occur in other disorders e.g. MS, post cancer fatigue.