Letters From Our Readers - Comments & Suggestions 02/27/08

I've noticed recently that many people have had the same experience I have had with this disease: initial infection, followed by semi-recovery of health, and then around 15 years later a complete relapse that leaves one completely disabled.

Dorothy Wall, in her book Encounters with the Invisible (a really good book by the way), describes this same disease process. I've also read numerous blogs where many women have endured the same scenario.

This sounds very much like post-polio syndrome and I'm wondering why it's not being aggressively studied. What's most alarming is, if this is the way that the disease progresses, then millions of people who have recovered to one extent or another are at risk for a relapse that could potentially debilitate them for life. This should be addressed by researchers ASAP! – L.L.

Q&A Session with Dr. Klimas

Thanks for posting the great Q&A session with Dr. Klimas. I think one of the websites posted in the article is incorrect. I'm fairly sure that Dr. Klimas meant to direct readers to the website for the International Association for CFS/ME, which can be found at http://www.iacfsme.org. The website listed, http://www.iacfs.org, has nothing to do with CFS. – Marjorie

Note: Thank you for pointing out the error. We corrected it right away.

Creative Cleaning Tip

After many years of enjoying a home of our own, we sold our home at the end of last year and moved into a small apartment. Mounting medical bills and the continued worsening of my ME/CFS were the deciding factors. After years of living with this health invader I have had to learn how to do many tasks a different way in what I call my “new reality.”

In our current apartment we have a white ceramic floor which is a nightmare to keep clean. I do not have the energy to mop it daily. So I deal with it by taking one of those sponges with the scrubbing side and tossing it onto the floor. I then step on it and move it around, scrubbing up the spots and stains. I get the floor looking much more acceptable and only have to bend down once to retrieve the sponge/scrubber - or just use one of those stick type grabbers to pick it up.

Even if you have to use a walker or wheelchair, which I sometimes do, this still works. There are many tasks you can do using your foot instead of your hands! – Theresia

Thoughts About the Name Change

When changing the CFS name to ME/CFS, I think it should be spelled out as Myalgic Encephalomyelits and not Myalgic Encephalopathy, which differs quite a bit. The latter can encompass many mental health problems with the brain, whereas the former diagnosis does not. To me this would just be another way for the CDC and NIH to funnel research funds into a general fund for all mental disease research. It’s good that we may get a name change but let’s not make the mistake of jumping out of the frying pan into the fire and then another name change suggested later on would not get very much attention when the names look so much alike (in spelling only). – Mary

I Know I’m Not Crazy

I appreciate the help. I was diagnosed with FM/CFS three years ago. It was quite severe with horrible muscle spasms that started in my feet and worked their way up to my throat. Then all the signs of neuropathy, headaches, horrible body aches and fatigue… They've run all these tests and can't find anything. I know at some time I had mono, but I don't know when. I've suffered with fatigue off and on for years. About three months ago my body went into a bad dive. I filed for disability, but I still want to get my health back. I'm slowly recovering and having better days. But simple things like cleaning the bathroom get me sick the next day and I can't figure out whether it’s a virus or the FM/CFS. So I appreciate the articles and the fact that I know I'm not crazy. – Cammie

What’s Working For Me

I was diagnosed with CFIDS and Fibromyalgia by Dr. Charles Lapp in 1994…I would like to share a few things I have started lately that have been significantly helping me.

Most notably I have been taking the presciption Lyrica^R. My MD and I theorized that since it has recently been advertised as a treatment for Fibromyalgia, it might also help CFIDS. With the 1st dose, it immediately relieved a great deal of the general bad, sick, unwell feeling that had been with me for so many years. It seems to block "feel bad" nerve signals just as it is thought to block pain signals…

At the same time I was prescribed Lyrica, my MD and I discussed methylcobalamin B-12. He started me on the Rx: Metanx^R (Rx label reads "METANX SF LC/F"), which contains methylcobalamin B-12, B-6, and a specially formulated form of folic acid. Among other uses, this is supposed to help, maybe even aid in healing neurological problems caused by nerve demyelination [destruction or loss of the insulating myelin sheath], as has recently been postulated as a major factor in CFIDS. It, too, seems to make me feel better.

I have continued on my high-dose (3ML IM 2x wk) cyanocobalamin B-12. The two B-12 formulations as well as the Lyrica seem to be working synergistically. I am realizing some perceived improved cognitive functioning. My activity level has increased and my social functioning is better. I have been taking the new medications for a little over one month now…

Two supplements I have recently added are Corvalen^M and Jarro-Dophilus EPS^TM... Both seem to strengthen my immune system. The Corvalen^M seems also to strengthen me generally and my muscles in particular, especially when I also take creatine monohydrate…

All these improvements in my illness and in my life in general have come about following about 1-1/2 years of cognitive-behavioral therapy that ended about six months ago and healing meditation that I've been doing for two months…I would like to share this with others with CFIDS/Fibromyalgia. If they take nothing else from it they should at least see if their MD will try them on Lyrica and Metanx… - David

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