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Selected Letters on the Name Change: CFS Newsletter September 13, 2006

  [ 262 votes ]   [ Discuss This Article ] • September 13, 2006

A spoonful of “Wilde”

…I use humor to get me through the days. It works quite well. Here is my quote for the day, that I think many would find helpful. I call them “Wilde-isms” after my favorite writer, Oscar Wilde: "Life is too important to be taken seriously." This quote is held close to my heart, since Wilde wrote it while unjustly incarcerated for simply being gay. He was in poor health and only had sunlight from a hole above his cell. Nevertheless, he maintained a brilliant sense of wit and wisdom about him. To better health! – Leeza

* * * *

Awareness is growing!

I recently had some interesting conversations while visiting Honolulu with my husband who was attending the American Bar Association annual meeting. I usually accompany him, and for the past few years, since I became ill and stopped working, have hedged when asked the inevitable, “What do you do?"

I used to be a highly functioning professional and had no problem talking about my life. After several years of vaguely talking about health problems I just came out and said “I have illnesses called Chronic Fatigue Immune Deficiency Syndrome and Fibromyalgia.” To my surprise, people were very compassionate. Many were familiar with the disease and were so sorry and said how they would not wish such a painful condition on anyone.

They offered how difficult it must be to manage and how well I seemed to be doing. When I told them about my struggles, how I follow a diet that is filled with organic fruits, vegetables, meats and whole grains, reduced my dairy intake, use supplements, and pace myself, they were interested and wanted to know more, and asked about my doctor who practices both traditional and "alternative" approaches. I was just amazed.

Several people even broached the subject of a [CFS] name change with me. They thought that “Chronic Fatigue Syndrome” does not convey the seriousness of the disease and toll it takes on individuals and families…

I was caught off guard by these reactions, and was thrilled to find that awareness is growing. I am not hiding my condition any more because I am afraid people will think I am overreacting and they are just as tired too. – Merrill

* * * *

But not all doctors are aware

Thanks so much for having this Web site, as my mom and sisters have all been diagnosed with [Fibromyalgia]. My doctor, for one, does not know how to deal with it – and now says there is a lot of controversy in the medical field about it! Sooo your site is most helpful to me, when I have a problem and need answers to some questions I may have about it. Thank you again… for giving us such quality material to read on. - Melodi

* * * *

One strategy for family germs

I'd like to know what to do when my hubby returns from a trip, and has a bad cold or flu. We need a plan. This week he came in with a drippy sneezy cold, exclaiming that everyone where he'd been was sick, and had the cold, which turns into a sore throat. He'd used a whole box of tissues on the eight-hour drive home. I freaked.

What takes him a few days to get over can leave me with pneumonia and daily IV’s for months. He ended up going to a motel for a few days, since we figured his few days’ inconvenience was the better [alternative]. Was that reasonable? What else can we do? – Flowersong

* * * *

Fibro & anxiety, panic attacks

Thank you so much for your most recent articles [including “Vitamin D Deficiency Associated with Anxiety and Depression in Fibromyalgia” and “Menopause Transition Harder for Women with FM/CFS”]. I have Fibromyalgia and had no idea that my recent diagnoses with having anxiety disorder and panic attacks could be linked with having Fibromyalgia. I found the articles extremely interesting and very helpful. I will talk with my doctor about this as soon as I see him. Thanks again for raising attention to this very touchy subject. - Inez

* * * *

One person’s experience with pain relief

I have just been put on the drug Lyrica, 85 mg, one with breakfast and one with the evening meal. It works wonders for the pain of CFS and Fibromyalgia, both of which I have been diagnosed with for 16 years. I have been disabled for that period. I am also diabetic. Everyone should ask their doctor about this drug. - Bev

* * * *

FM trial in San Diego?

If you know of any research, trials, etc. going on in the San Diego area, I want to participate. Have had FMS for about 20 years now - and am very pro-active. Though the [Mitochondria] "Ignite" product looks pretty inviting, I mostly just take vitamins, minerals, probiotic formula, and magnesium. The fatigue seems to increase with age – quite dramatically though? Thank you so much for the ProHealth Fibromyalgia Edition. – Pat

Ed. Note: As a first step, see the article “American Pain Foundation’s FM Pain Management Trial Directory” from our August 30 FM newsletter, at

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