I’ve shared before that I have had a 13-year struggle with Chronic Fatigue Syndrome (CFS). This is an illness that has no known cure and creates a pattern of physical breakdown that borders on complete exhaustion through the inflammation of the central nervous system. Personally, I can function at reduced capacity and must take breaks and rest at various times of the day. Some days are so-so and others are terrible. By God’s grace I have learned to deal with this illness (weakness) by developing an increasingly contemplative practice of Christian faith. Some of this appears in occasional blogs and some of it is too personal to share at this point.
A few months ago scientists discovered proteins in spinal fluid that can distinguish people with two different, but similar, mysterious illnesses that mimic one another – Lyme disease and CFS. The study earlier this year is small and needs further verification. But some see it as a promising start. The bottom line, however, is that there is still no good means of consistent diagnosis or treatment. Dr. Suzanne Vernon of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America said, “This is a very important first step.”
Lyme disease is generally cured, over time, with antibiotics. But even with the use of antibiotics some patients report pain, fatigue and memory or other neurological problems that linger for months or years after treatment ends. This post-treatment Lyme disease shares symptoms that characterize CFS, thus the linkage of the two illnesses.
The more recent study analyzed spinal fluid from 25 chronic Lyme patients and 43 people with a medical diagnosis of CFS, along with 11 healthy people. Using a special high-powered technology, researchers detected more than 2,500 proteins in each group. More important to the question they found clear sets of proteins – hundreds each – unique to each disease, according to Dr. Steven Schutzer of the University of Medicine and Dentistry of New Jersey, who led the study.
The next step in this process will be to study more people to see if certain protein abnormalities might serve as a signature for better diagnosis of patients. If these proteins can be found in blood then the tests will be easier and less costly.
A Lyme specialist, Dr. Joseph Breen, says caution is in order since much more funding and testing is needed. But the pool of clues might also eventually help scientists to figure out the underlying biology of these two similar illnesses that radically alter the lives of several million Americans.
For me personally this is, of course, more than interesting. But I have no expectation of a cure in my lifetime. I seek to live each day in the experiential presence of God’s love in Christ and keep my heart focused on Him. If God leads scientists to a cure I will rejoice but I hope God will get the glory, at least in my body and spirit. This is all about becoming weak in order to know his strength. He leads each of us to this point through various means. One of mine has been this chronic illness that impacts me every moment of almost every day of my life.
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Thanks for the news, John. Living with CFS (I have been diagnosed with it, as well as with fibromyalgia and rheumatoid arthritis) is a challenge, but God’s grace is there with us. In a strange way, I’ve become thankful for this illness that slows me down and forces me into a more comtemplative faith walk. Of course, I’d rather all the pain and deep exhaustion would disappear, but the resulting depth of my relationship with Christ is the bright “silver lining” behind the dark clouds of illness.
Hang in there! I’m praying for you!!
From the Book of Common Prayer 2011(www.bcp2011.info):
Direct us, O Lord, in all our doings with your most gracious favor, and bless us with your continual help; So that in all our works begun, continued, and ended in you, we may glorify your holy Name, and finally by your mercy obtain everlasting life; Through Jesus Christ our Lord. Amen.
The Almighty Lord, who is a strong tower to all who put their trust in him, to whom all things in heaven and on earth bow down and obey, be now and always your defense, and may you know and feel there is no other name from whom we receive health and salvation except through the Name of our Lord Jesus Christ. Amen.
In the grace of Christ our Lord,