This isn't the newsletter issue that got lost – I am still trying to reconstruct that one. However, this issue has lots of great information that has come in since then! I hope to get the other issue out in a week or two. Thanks to everyone who wrote with technical advice so that I don't have a data, time and energy loss like this again! - Dominie

14 TOPICS. Don't miss the RED ones! Readers comments in BLACK. My comments in TEAL.

A Christian-based newsletter about Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (M.E.) - sharing thoughts, research and experiences.

"I am so thankful you do these newsletters, they always help me, and I always learn something new."

“Thanks for providing hope to those of us in a very dark place. The situation one is placed in with this malady is essentially inexplicable to those who do not have direct association with someone stricken with it. A simple dinner invitation produces a great dilemma in that accepting for any date beyond today is not possible as I have no way to predict if that will be a good or bad day for me.”

"I have been recently diagnosed with both Fibro and CFS. I don't know if I should be relieved or devastated about my diagnosis. My husband says, 'This explains it all!' For years now, people have thought I have been exaggerating - trying to get attention - a hypochondriac - or just plain crazy. Any help/suggestions would be SO APPRECIATED! How are you even able to keep a job? I hurt, get depressed, can't think, the list is endless."

FROM DOM: I too was considered a hypochondriac and malingerer back in the 1980's when my FMS/CFIDS first began. It has been a long journey as a human guinea pig since then to find things that help me. My personal list of what I need in order to function (read: work) is at www.fms-help.com/what.htm.

"There is a very big controversy regarding the Maldarelli study. It looks very bad to me, like the study is set up to disprove XMRV, under false pretenses. Please let you readers know they should be very, very cautious before signing up for this.

Are we ME/CFS patients XMRV religious fanatics? by Mike Turris on Thursday, January 27, 2011 at 12:51pm - This is what Dr. John Mellors calls us. “How many negative papers will it take to get rid of these religious fanatics?” It seems that Dr. John Mellors and Dr. Frank Maldarelli have been recruited against XMRV. Unfortunately this information has been confirmed by @xmrvbug in Twitter. The goal of this study is to make XMRV and CFS go away. They will not run validated assays and this study can only do harm to the entire patient community as it is purposely designed NOT to detect XMRV... “Discourage anyone from participating in this new false study.”

It is very sad but we must not forget that WPI is moving forward. There are many reputable scientists and physicians who are working hard to learn the truth and WPI will not give up seeking not only the truth behind XMRV/MRV but all aspects of the pathophysiology of ME/CFS. I am so sorry to hear this news after all the time and effort WPI’s team have put into this research. Just don't worry WPI, we, all the patients, are with you."

"I have a serious sleep disorder. I am wondering how many Fibro patients have been molested/raped as a child. I have had insomnia since childhood and several nights a week, I stay awake all night, which is not good."

FROM DOM: Here is the controversial article about Chinese Tiger Mothers http://online.wsj.com/article/SB10001424052748704111504576059713528698754.html. and Dr. John Rosemond's comments http://lacrossetribune.com/lifestyles/relationships-and-special-occasions/article_028645fc-2407-11e0-ad88-001cc4c002e0.html. Personally, I think the "tiger mother" approach to parenting and education would be damaging and possibly even deadly for a child or teen with FMS/CFIDS. See www.fms-help.com/teens.htm. We are not lazy. We are sick.

"I woke up late this morning and missed the church service I had wanted to attend. I just can't function well on less than say 8 or more hours of sleep. I feel badly about it, too."

FROM DOM: Wow! I sure do understand this! My toughest day of the week is Sunday, because I have to be up by 9 a.m. and alert enough to play the organ for church at 10 a.m. I teach piano until late in the evening on weekdays, so my sleep schedule is later than most people's, but this actually works out okay for me....except for Sundays, which are "too early" for me. I used to have such anxiety about falling asleep on Saturday night - and still do at time - even with my sleep meds, because I was afraid I wouldn't be able to function the next day. But God has helped me a lot, and enabled me to be faithful to His calling as a church musician. "Normal" people would never understand how hard it is to function with FMS/CFIDS! With a severe sleep disorder www.fms-help.com/insomnia.htm, even the best laid plans often don't work out. We plan, but then have to cancel our plans. Eventually, we stop planning and committing ourselves to anything past the next 24 hours. Thankfully....I am managed better now than ever before in 29 years of battling this condition (since 1982). My "must have in order to function" list is at www.fms-help.com/what.htm. Life sure must be a lot easier for those who are well! (Of course, these days, it's getting hard to find a truly well person!)

"I went to a great fibro doc, and they did a ton of blood work. i have "walking pneumonia." it's "chlamydophila pneumoniae." according to wikipedia, it's co-morbid with fibromyalgia. i also showed past infections with HHV6 and cytomegalo. still waiting for epstein barr (EBV), but sure i have that. my white cell count LOW, red cell count LOW, natural killer cell LOW, only 6% of optimum (yikes!). it was a complete surprise to me about the low blood counts and the pneumonia, though i have had lung issues for about a year. it can cause inflammation of the heart, arthritis. My family never believes or wants to acknowledge i am sick. i'm so tired of people not listening, not trying to understand."

FROM DOM: I have much about these medical conditions in my archives. Use the Google box at the bottom of this page to locate references on my site and in past newsletters.

FROM DOM: Below is an interesting chart created by a reader, who has given me permission to use it in this newsletter. He created the FibroWheel to analyze his symptoms. He showed it to his chiropractor (holistic) today and he was stunned! The doctor actually has this issue himself and sets office hours such that they are closed on Thursday, as five days in a row will be more than he can handle, but he can work ten hours and four days. I'm sure many of us can relate to this chart. Here is a quote from this reader about his illustration shown below: "For me, understanding something is easier when I can visualize the relationships between the inputs and outputs. I have been thinking of a way to visualize my own health for some time (so, the source of the FibroWheel is me). The problem that had me stumped was the indirect nature of cause and effect. I do see pain => fatigue pretty clearly. I also have discovered that taking a pain reliever when fatigued sometimes helps the fatigue. My theory there is that I have felt the pain for so long I might not be aware of it and it becomes more like gently adding white noise to a crowded room at a party. You would only hear it if everyone stopped talking at the same time and then we turned it completely off. There is an element between the nervous system and brain that acts this way in my case; I can feel fatigue but only sharp pain if I move. Sometimes there is a background pain making things rough. A wheel that shows one symptom picking up the next like a snowball headed downhill seems like it should work. The problem is that often the symptoms show up in the wrong order. So, there is a correlation between trigger and symptom, between intensity or number of triggers and intensity and/or number of symptoms but there is not a 1:1 cause and effect relationship. This is how I came upon the idea of a pinwheel. Any breeze to any leaf of the wheel can start it spinning. What I do know is that as it spins and picks up speed it can intensify symptoms and in unpleasant cases add more symptoms to the list. So, you inspired me to think about this a bit more scientifically and the FibroWheel is the result of my internal inquiry. I did this so that my doctors would understand the situation better. I drew the draft in a waiting room and my pain management doctor asked if she might keep a copy in my file. I will send her the completed version next time I see her. For some of us, understanding helps us through darker times. The wheel might resonate with some of your readers and perhaps help them feel like others of us are going through the same battle."

FROM DOM: Also, see two books I reported on in past newsletters: "Too Loud, Too Bright, Too Fast, Too Tight" and "The Highly Sensitive Person." Use the Google box at the end of this page to find the info. Lots of correlations.

FROM DOM: This is a an important re-run from www.fms-help.com/091609.htm-- I hear from many teens and young adults with FMS/CFIDS. School and social life is generally disrupted, and many are suffering the stigma of a "invisible" illness. Here's a support group for young people with FMS/CFIDS--http://sunshine35446.yuku.com/forums/66/t/Young-Adults--teens--FMS-CFS-Fibromyalgia-Chronic-Fatigue-Sy.html Also see my pages: www.fms-help.com/teens.htm (kids and teens with FMS/CFIDS) and www.fms-help.com/neuro.htm (scroll to the section about students). And try googling the book: "Life Disrupted: Getting Real about Chronic Illness in Your Twenties and Thirties." It's nice to know that through the internet, we are never really alone or isolated with our illness or problems!

“I am encouraged by the stories of the other men at www.fms-help.com/men.htm. Each story sounds like the next but told from a different perspective. It’s nice to know I am not alone.”

http://www.newsweek.com/2011/01/23/why-almost-everything-you-hear-about-medicine-is-wrong.html - Snippet: "In just the last two moonths, two pillars of preventive medicine fell. A major study concluded there’s no good evidence that statins (drugs like Lipitor and Crestor) help people with no history of heart disease. The study, by the Cochrane Collaboration, a global consortium of biomedical experts, was based on an evaluation of 14 individual trials with 34,272 patients. Cost of statins: more than $20 billion per year, of which half may be unnecessary. (Pfizer, which makes Lipitor, responds in part that “managing cardiovascular disease risk factors is complicated”). In November a panel of the Institute of Medicine concluded that having a blood test for vitamin D is pointless: almost everyone has enough D for bone health (20 nanograms per milliliter) without taking supplements or calcium pills. Cost of vitamin D: $425 million per year."

“Knowing I could hit an energy or pain crisis, I think through things to measure what is truly important in life and then give myself to those things. I rested a whole day in bed one day so that I could pick my sons up from swim team – something my wife kindly does but was unavailable that night. As it turned out, one son had a friend with him who wound up spending the night. I took them to eat after practice, was feeling unusually rested for 10 p.m. and we had a great time. One key for me has been learning how to live and enjoy a good moment. This sustains me through tougher times. I knew it would cost me the next day but I chose to do this because it was an important moment.”

FROM DOM: Wow! This reader has said it all! This is how I must manage my life as well - when at all possible to manage ones life! Last week I was invited to a birthday party for someone I care about very much. I sure didn't want to miss this big event! I was able to get myself there after work, but paid for it the next day, which of course, no one knows about. Even the simplest things in life can be so difficult and unpredictable with fibro. This is such a weird illness! No wonder people don't understand us!

I keep writing these newsletters (since1996) because I know how much we all need understanding, encouragement and information. See my 100 Tips for Coping with Fibromyalgia and Insomnia at www.fms-help.com/tips.htm, and more currently, the various tactics I use to stay as functional as possible: www.fms-help.com/what.htm. I also have tons of insightful and fascinating articles about FMS/CFIDS on my homepage at www.fms-help.com.

Just wanted to also mention that today is the 6th anniversary of losing my beloved dad. His remarkable story is at www.fms-help.com/eulogy.htm.

II Corinthians 1: 4 - "[God] Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God." Visit Dominie's FMS/CFIDS Homepage at www.fms-help.com for Fibromyalgia and Chronic Fatigue Syndrome sufferers and their families.

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DISCLAIMER: I am not a medical doctor. I am a fibromyalgia / chronic fatigue syndrome survivor. The purpose of this website is not to diagnose or cure any disease or malady, but is presented as food for thought. This information cannot take the place of professional medical advice. Any attempt to diagnose and treat an illness should come under the direction of a physician. No guarantees are made regarding any of the information in this website.