Letters From Our Readers – International Viewpoints 1-17-07

ME is More Suitable

I'm from the North of Ireland and receive your news every week. I can't begin to tell you how much I rely on the info you send out. It is such a comfort to me. I fully agree that the name CFS is an insult to the devastating illness. We tend to call it ME [myalgic encephalomyelitis], which I think is much more suitable, even though people look at me with a distant, vague look when I tell them I have ME. Please keep up your wonderful work. I don't know what I would do without your support, as we have no one in the North of Ireland to turn to. There is no support of any kind, which I find an absolute scandal. Thank you. – Paula (from Ireland)


Promising Study on Dental Amalgam Removal

In the ImmuneSuppprt.com library…on the page "Causes of Chronic Fatigue Syndrome" under the heading "Metal Sensitivity" Stejskal is mentioned [as the author of a study] and, therefore, I suppose the article referred to is Swedish. A few weeks ago I attended a lecture given by two Swedish dentists…that did a study on removal of amalgams and its correlation to health or lack thereof. One of the things they had the most success with was Chronic Fatigue Syndrome. The study was stopped because a few initially got worse from treatment. During 2006 they did a follow-up on the people that were treated and the long-term results are much greater than the immediate response. The explanation could be that it takes a long time for the body to rid itself of heavy metals. My point is that follow-up on removal of amalgams…with the right protocol and preventions can give extremely good results, better than thought earlier. Maybe your page could be updated with newer facts about it. I'll be happy to supply more info. – Liss (from Sweden)


Health System Shortcomings – Nothing’s Forever

First of all, I would like to say how impressed I am with your newsletter and articles on CFS and FM. I have suffered from CFS for five years and at the beginning of this year was diagnosed with Fibromyalgia. Sadly, in the UK, patients do not get much help at all. There are very few clinics and those that we do have do not have the facilities or the experience to cope with the illnesses. Most patients are left on their own to cope with the pain and the problems. Our GP's are reasonably knowledgeable but do not have the time to work with us on a one-on-one basis.

I have tried many drugs over the years…but unfortunately most of them I cannot take as I seem to be allergic to them…I just so wish someone would find a homeopathic remedy to these illnesses. I also wish that I lived in the U.S., but that will never be. (Well we can all dream.) To be honest, the best medicine is to have a positive attitude and keep fighting in the hope that one day the sun might shine again. The one phrase that keeps me going during the really bad times is "nothing lasts forever." It always helps. – Pauline (from the UK)


Parallel With Diabetes Before Insulin

[Rich] Thank you for your caring response to my e-mail about someone saying people like me (with CFS & chemical sensitivity) are intolerant people who are only trying to make the world change to suit us…You asked what my response would have been… I love to point out that "…there were many patients living in mental institutions until insulin was discovered…" (quote published in JAMA).

Intolerant? It seems that so much of my life has been a practice in tolerance of the day-to-day landscape of this illness. The woman who made that horrible statement will just never know. When I first heard her say it, I felt like my heart was being squeezed in a vice. I went home and cried from the depths of my soul …I learned years ago how much hidden, buried grief there is over the life-losses incurred with this illness…Thanks for the work you do, and for not turning away from us and giving us up when your own health improved. – Diane (from the USA)


How Can An Individual Help Others?

I am relatively new to your site. I have…had fibro since the early 80s. I’ve built myself up to a relatively filled life, but suffer in the fall, winter, and spring with all-body pain, and in the summer with severe migraines. I see a lot of articles on chronic fatigue. After living with this for so long, I feel like I'm a textbook case. We suffer numerous other things including the effects of chronic fatigue, but I wouldn't lump them into the same category. Can my knowledge be of use to anyone there? I'm willing to share. – Joan (from Canada)

Note: Every individual’s experience is valuable. Since FM and CFS have so many overlapping symptoms, it can certainly be helpful to share what we’ve learned with one another. We would encourage you to visit the message boards or join a live chat where you can begin to interact with other patients.


No Local Support and Direction? Go Online

I was diagnosed with high autoimmune levels and Fibromyalgia 10 years ago. I have recently found out my son also has the same high autoimmune levels as mine. Now I am waiting for my daughter’s results…I don’t have any support here, as people put us in the “too hard” basket…Autoimmune problems run in the family. My aunt died from sarcoidosis, lupus, and cardiomyopathy. She was misdiagnosed for 10 years, and this is what worries me. I am from Australia and would like some advice on what to do and how to be listened to…If you could, please send me in the right direction. I would appreciate it. – Kathleen (from Australia)

Note: Thank goodness for the Internet! When you can’t find support in your local area, at least you can find it online. Try going to our message boards and start a new topic that shows what information you’re looking for. For example, “Looking for doctors in Australia” or “How can I make my doctor listen?” Others will soon be there to encourage you and share what they’ve learned that might help you.

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