Letters From Our Readers – Comments & Suggestions 12-12-07

Research Discriminating Against Seniors

Re: “New Trial of Constipation Predominant IBS Treatment Now Recruiting at 69 Centers in U.S. and Canada”

Why is 65 the magical cutoff age for people doing drug trials? Except for Fibro and some arthritis, I am in good health for my age (74). Goodness knows, aren’t we the ones needing most of this stuff? – D

Note: In line with your comment, see the survey we’re running this week to provide sorely needed data on the experiences of ME/CFS patients in different age groups. It will provide the basis for an article by author Dorothy Wall and Dr. Lily Chu, MD, PhD, which they will submit to such large-circulation publications as the American Association of Retired Persons (AARP) magazine.

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Chemical Sensitivity Possibilities

Regarding chemical sensitivities, I am especially sensitive to material dyes and sizing compounds. I cannot wear new clothing prior to washing even though I stick to white or light colors. Newsprint is my most difficult chemical sensitivity. I sneeze, itch, and my eyes water. I have been tested twice for allergies and was not sensitive to the test chemicals. I hope that this helps someone. – Fred

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A Source of Info on Financial Resources

I have had chronic Lyme disease for 38 years this Christmas – after 34 years of being misdiagnosed with Fibro/CFS, etc. I want to make your members aware of an outstanding list [of financial resources that could be helpful for anyone], compiled by Lyme Disease Network (Lyme Net) member Melanie Reber from information contributed by countless other members.

The list is titled “Methods of Coping with Financial Burdens” http://flash.lymenet.org/ubb/Forum1/HTML/035162.html

Topics include:

  • Methods of Coping with Financial Burdens;

  • Getting to the Doctor;

  • Affording the Medication;

  • Emergency Funds’ Gathering your Resources;

  • Know Your Expenses;

  • Deduct Your Expenses;

  • Paying Your Bills;

  • Learn to Budget;

  • Cutting Back;

  • Disability Issues;

  • Other Programs;

  • Home Loans;

  • Bankruptcy;

  • How you can make a difference.

  • The above gives you an idea of what you will find in there. Happy hunting! – Betty G, Iowa

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    Short-Term Disability Problems & Resources

    I don’t know where to turn. I’m getting more ill by the week. My insurance company won’t approve my short-term disability claim. They just keep saying they need more information. My so-called CFS specialist thinks I should be back to work, that the symptoms I am displaying aren’t CFIDS related. If I’m up for any length of time, more than an hour, I get flu-like symptoms, become weak, cold, and dizzy. I have to go to bed – sometimes for days. My husband has seen it with his own eyes. He’s taking me to see her next week and telling her what he sees and that she better figure out what is wrong, fast, because I am on the boarder of losing my job and my health insurance.

    I just don’t know what to do or where to go, except to a lawyer. – N

    Note: A good resource for information about disability issues is Mary Schweitzer’s Disability Benefits Information website: http://www.cfids-me.org/disinissues The site also provides a “Disinissues Good Lawyer List”: http://www.cfids-me.org/disinissues/lawyers.html#states

    And if you decide it’s time to find a new doctor, see the letter in this week’s Q&A Session for some good-doctor list resources.

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    4 thoughts on “Letters From Our Readers – Comments & Suggestions 12-12-07”

    1. sulis says:

      I was interested in the note from Fred on chemical sensitivities.
      I had the same problems very acutely in the early 80s. I could not even walk past the open door of a magazine or bookstore, or go in a fabric store, a clothing store, or the detergent aisle of the grocery store. I also could not wear synthetic clothing or cook on my gas stove without losing my breath. I ended up in the emergency room and had the good fortune to find a doctor who believed this was a real medical problem.
      What turned out to be at the root of all of these seemingly different problems was sensitivity to petroleum products. I had to avoid petroleum derivatives whenever possible. We kept our gas heat, but switched to an electric stove, switched to vegetable based soaps and detergents, and put all our books away. I did not read any magazines or newspapers. (This was a great hardship as I am a voracious reader.) I thought I would never be able to work as a librarian again.
      I discovered that I could wear cotton and silk, but I had to wash them before wearing. When my mother developed the same condition, she bought her “new” natural fiber clothes at thrift stores to avoid fabric finishes. We discovered we were able to read by putting a clear picture box frame over the book and limit our reading time severely. Eventually she got talking books from the library.
      By doing all this I was able to get to the point after 4 years that I could take a job cataloging new books and could even read newsprint, which is the worst.
      I still have a lot of sensitivities, but I can get along much better now by limiting exposures to petroleum.

    2. BettyG says:


      I sent you the above detailed list of FINANCIAL RESOURCES compiled by many members on http://WWW.LYMENET.ORG.

      Yet, why didn’t MY NAME, BETTYG, IOWA, show up as the “source” of this info? To me that wasn’t right.


      1. minnesota says:

        I see your name is included now, Betty, and thank you so much for the great info!

      2. BettyG says:

        Thanks to whoever corrected the oversight of not naming the source of this info!!

        MINNESOTA, thank you for replying so their system sent me a note at my home email address! I wouldn’t have know otherwise.

        Minn., hope you folks have escaped the ICE STORM that hit southern Iowa, Okla, etc!! STAY WARM/SAFE AT HOME!


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