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Letters From Our Readers – Comments & Suggestions 10-31-07

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Too Much Sunshine

I have had symptoms of Chronic Fatigue Syndrome and ADHD since childhood, and I’m now 65. I lived in Minnesota until my family moved to Arizona when I was 17. Over the years, the five months of intense heat and sunshine in Tucson/Phoenix began causing me depression to the point I’d start fretting in March about the coming summer. I was obsessive about this, depressed and unable to function in many ways. At that time I didn’t know I had CFD/ADHD. After 30 years I moved back to Minnesota. Finally this affliction caught up with me and I’m on SS disability. I love cloudy rainy days. If the sun doesn’t come out for a week or two, I don’t care. There is such a thing as just too much danged sunshine! – Kathleen

[Note: You may have what is known as summer SAD (seasonal affective disorder). Most people have heard of winter SAD, but few realize there is also a summer SAD. Here is a link to an article that ran in the Los Angeles Times this summer and might tell you more about it. It is archived in the North Carolina Mental Hope News blog site. It quotes Dr. Thomas Wehr – a psychiatrist in Bethesda, MD, and a former National Institutes of Mental Health researcher.

Dr. Wehr says summer SAD hasn’t gotten so much attention in the U.S. because it is much more prevalent in populations living nearer the equator, while winter SAD is more prevalent the farther north you go. Importantly, he says summer SAD “is not a light-related phenomenon and should not be considered the flip side of winter depression.” So far, standard antidepressants are the only medical intervention that’s been shown to be effective. Dr. Wehr published a report back in 1991 titled “Contrasts between symptoms of summer depression and winter depression.” To read the abstract of this report, go to http://www.immunesupport.com/library/showarticle.cfm/ID/8415]

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Look Forward Most of the Time

About the rule of not looking back (from “Dr. Clauw’s Golden Rules for Chronic Fatigue Syndrome and Fibromyalgia Patients”): Dr. Clauw is correct, but I have a few exceptions.

If you keep a pain diary (to look for patterns that might help you or your doctor treat you better), you will have a record of where you’ve been. This can be very helpful when you ARE better, but still feeling down because you aren’t the same as before you were ill. Being able to look back at all the different symptoms you used to have and the kind of pain you used to have puts things into perspective. Also, such a diary can help you develop a plan of what works for you when you have certain symptoms. Furthermore, your diary can help you ascertain what stressors make you worse.

So, yes, look forward. There IS hope. But DO look back for things that can help you in the future. – Pearls

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Name Should Be CFIDS

In view of the statement that the name ‘Chronic Fatigue Syndrome’ damages people, it needs to be realized that those of us with the condition are to blame for that name. We got lazy and shortened it. The real name is very descriptive and tends to stop the poor-perspective problem and that is Chronic Fatigue Immune Deficiency Syndrome/ CFIDS.

CFS evokes the need to explain and explain or comments like “Yeah, I’m tired all the time, too.” CFIDS actually evokes attention from doctors and keeps others from putting you in a petty health category. ME is more damaging than CFS. I have said that to many and it evokes laughter every time. The joke is “Oh so now it’s all about you” or “Getting pretty conceited there, aren’t you?” Someone said the other day “ME, eh? Sounds like my selfish brother.” Plus no one can pronounce Myalgic Encephalomyelitis let alone explain what it means. Leave the name alone, please! You’re making the problem worse. It’s going from the frying pan to the fire.

It has been CFIDS for 20 yrs now and is in all the medical journals as such. Just stop calling it CFS and make sure you call it CFIDS like it’s supposed to be and it solves the whole problem. It angers me that so much time and money is being wasted on this stupid name change thing. That is time and money that could be used to find a cure. I was one of the first diagnosed in my state years some 15 yrs ago. It was CFIDS then and it’s still CFIDS to me now. It will always be CFIDS to me because I prefer to not deal with the laughter that “ME disease” evokes. I know 10 people with CFIDS. They all are disgusted with time being wasted and want you to leave the name alone. – SB

[Note: In 1988 the U.S. Centers for Disease Control and Prevention (CDC) chose to name this mysterious illness ‘chronic fatigue syndrome’ and published a case definition (the “Holmes criteria”) to be used for research. Patients, unhappy with the name, reacted almost immediately and many adopted the name CFIDS instead. Although CFIDS was popular with the patient community, it was only occasionally used in research and was not accepted at all in government circles. If you’d like to read more about the history of the name change efforts, see “A Disease in Search of a Name: The History of CFS and the Efforts to Change Its Name”]

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ME is OK, CFIDS is Better

The CFIDS acronym notes that the immune system and its dysfunction is involved. I love that. I think people need to know that the entire bodily system is involved in CFS, that the immune system is involved, and that our illness is on a cellular level. ME is OK – but a new name could be just as good. Thank you. – Monica

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ME Gets Better Response

I think ME is fine. I use it and get a better response than the CFS name. People take ME seriously. Stay with it. – Kathi

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A Positive Difference

My grateful thanks to you and your Web site for making a positive difference in the lives of those people who suffer from ME such as myself. – Susan

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Note: This informaton has not been evaluated by the FDA. It is generic and is not meant to prevent, diagnose, treat, or cure any condition, illness, or disease. It is very important that you make no change in your healthcare regiment without researching and discussing it in collaboration with your professional healthcare team.

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One thought on “Letters From Our Readers – Comments & Suggestions 10-31-07”

  1. grannycfs says:

    The name should be M.E. because that disorder was defined decades ago – long before the erroneous name of CFS was concocted. Read the Canadian Case Definition to see the similarities to what we have. What we have should have the name of what it is. If you don’t know where to find a copy to read, just do a Google search on Canadian Case Definition for Mayalgic Encephalomyelitis/Chronic Fatigue Syndrome.

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