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Letters From Our Readers – Comments and Suggestions 8-01-07

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Knowing What I’m Dealing With

Thank you for putting your newsletter out. I was diagnosed with Chronic Fatigue Syndrome (I also have Fibromyalgia & lupus), but I had never found anyone who had the symptoms. So besides fatigue, I really didn’t know what else was related to it. I read the symptoms on your site and I have every single one of them! And now I understand it better, and can say, OK, I’m feeling this way because of this. It really helps to know what you’re dealing with. – Brietta


Message Board a Safe Haven

Lately things have been getting to me – being “fat”, poor, sick, isolated. But through it all, your CFS & FM Message Board has been an incredibly safe yet invigorating haven. I can follow others as they try new protocols, ask for help when it’s all too much, offer help, and feel I count. And your website is so clear and easy to navigate. It’s such a blessing. Just wanted to thank you so very much for all the work that you do to keep this site so helpful and supportive and easy to use. You offer such a rich variety of resources: articles and abstracts on the latest protocols, people’s stories and, of course, the Message Board. – Denise


New Hope or Dead End?

Regarding the “Live Chat with Martin L. Pall, PhD” transcript, I am always glad to see that there is more work going on to eliminate or curtail CFS. I do wish, however, that there were a database of “cured” or “greatly improved” people over a significant period of time for this or any other protocol. I know this is unrealistic – as these are “new” protocols. I enjoyed the information in this article but could feel myself tensing up and thinking “Oh no, not more hope that leads to a dead end.” I know this is a negative view, but I’m just exhausted and worn out and simply want a cure to be here and now. I look forward to hearing more about Dr. Pall’s work and how it impacts people. Thanks for featuring this. – B


Looking For a Personal Representative With Doctors

Over the last ten years, I have seen over two dozen doctors, and 90% were as Ms. Fransen described in her article, “Disrespectful Medical Treatment and Tips for Working With Your Physician”.

They were basically useless in helping me for various reasons, which I found out only afterwards. Though my budget is tight, I would gladly pay a medical professional, such as a nurse or physician’s assistant, to go with me to my doctors’ appointments and act as my representative to the doctor. Does this sound like a good idea to you, and how might I find someone like this, do you think? I haven’t been able to find anyone yet.

Below are some specific ideas on how a representative could help stop a doctor from ignoring my requests for help, or help me see quickly that this doctor is not right for me and my problems.

I hope with this person’s help that:

n I can be and appear as weak and ill as I actually am rather than try to be healthy enough to dialogue with the doctor about my health problems. Doctors have complained to me that I don’t sound or look ill. I explain to them each time that I got out of bed to be there and will have to return to the bed ASAP. I try to ‘pump’ up my adrenaline before an appointment only so I can get the most from the appointment with them. My appearance of being healthy is very temporary.

n The doctor will not be able to overwhelm me with medical terminology or theories.

n This person will be able to verify my symptoms to the doctor, rather than my telling the doctor this directly. Doctors like to suggest I am not evaluating my symptoms correctly, or they are psychosomatic, or they just ignore what I say. They won’t find it easy to do these things with my medical representative present.

n This person’s suggestions for tests, etc., would be taken more seriously by a doctor than if I make the same. Doctors like to disregard my suggestions from my research of related medical info, but would have a hard time doing that to a medical representative. – Buffy


Hardest Thing to Face & Deal With

I take one day at a time, or sometimes I take five minutes at a time. I live for today and do not plan for the future because, when you live in chronic pain as I do and have done for the past 17 ears, you find it better not to. I used to but got so disappointed when the event came and I could not do it. I live for the day I am in and I make the very best of it. I have so many talents. I knit, draw, spend time on the computer doing research, and all types of other art areas. I feel I do not have enough time in the day to do them all…There are so few hours in the day that I have to make use of.

This is the hardest thing I have found to face and deal with – I keep a positive attitude and have told people that I made a decision to only speak in the positive. If the conversation takes a downward turn, I tell them the conversation will be over unless they stop. I’ve actually had to say goodbye and hang up.

I’ve learned that my problems are my problems. Yes, they may be huge and incurable, but someone else who may be suffering also needs attention…Friendship is based on helping and trusting…Learn to keep a sense of humor all the time. Always listen to others and smile even if you are more than miserable…I found that having some people who support me 100% and are there for me has made the entire difference…Education is the key to everything, along with love and caring. I may be in extreme pain, but I won’t quit and I pray none of you do either. – Sharon


Diet For Celiac Disease Helps My IBS

I was having a lot of trouble with IBS. My rheumatologist did some blood work and discovered Celiac Sprue. I have much less trouble with IBS when I stay on the gluten free diet without wheat and gluten products. Is it possible that some of the IBS patients have celiac disease also? They could have tests run or try doing without gluten and wheat, etc. to see if it improves.

Note: For more information about celiac disease and gluten/wheat free diets. visit the Celiac Sprue Association’s Web site at http://www.csaceliacs.org


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

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