Letters From Our Readers – Comments and Suggestions 12-06-06

Hope Turned to Disappointment

I was hopeful reading your cover story about Dr. De Meirleir's discovery on the protein factor and how he has a test that he believes is 99% accurate in diagnosing Fibromyalgia.* …I couldn't wait to have it done to confirm my…diagnosis. But wait! The "simple protein test" costs over $500!

This is cruel and shameful. It may be a breakthrough for those on the money end of the deal, but unsound and unethical for me and others who suffer. Shame on them in the name of science. Sure, I realize it costs money to develop cures and research, but the majority of funding goes into the pockets of the CEO's and pharmaceutical companies…that is a fact! Just wanting you to know how disappointed I was. I was led to believe "a simple protein factor test" was going to allow me to further my wellness by getting a definite diagnosis…Thank you for letting me vent my feelings. I feel we should all go the route of the Canadians’ "free healthcare," but that's my opinion. – Susan

* See “Dr. Kenny De MeirLeir’s Breakthrough Research and Recommendations for CFS Testing & Treatment.”


From a Canadian Perspective

I also would like to see more international information. So much of what you share with us is hopeful, yet seems completely out of reach in Canada. Maybe this is the challenge presented by our over-burdened universal healthcare system which abandons us to cope on our own, without support and treatment, once a diagnosis is finally made. But perhaps if more information were available about resources in our country…we could become better advocates for ourselves. Also, some form of directory which could assist us in finding support groups and other helpful resources internationally would be a wonderful feature for the website. Keep up the good work! – Andrea

Note: As these two letters demonstrate, no healthcare system is perfect. It is extremely expensive to research and develop new lab tests and drugs. Until new tests are more widely used, the cost must be spread across the limited number of people who use them. As their use increases, their price usually decreases. And, yes, the big medical and pharmaceutical companies do often make large profits, but it’s that potential for profit that motivates them to continue to do the research and find treatments that will help us. It’s also worth noting that it’s not unusual for Canadians who can afford it to come to the U.S. for the quality healthcare they cannot get at home. To answer the question about more international information, as the redesign of our website progresses, we will be adding more international resources.


Inspiration a Needed Service

I just wanted to take a minute to let you know that you are doing a wonderful job in providing an inspiring and relevant update on issues related to Fibromyalgia. I have also watched the evolution of the newsletter and applaud your continual progress and efforts. Thank you for your continual inspiration, useful news and advice. You are offering a needed and appreciated service to society. – Maia


Wants More About Coping, Less About Scientific Studies

While I applaud the research and studies being conducted on new medications and connections between genetics and Fibromyalgia and other immune disorders, I find little in your newsletters that indicates you are getting this information to employers, news people, the public in general, and insurance companies…I don't need to know how I got the Fibromyalgia or what aggravates it and causes flares. I know those reasons all too well.

What I need assistance with is my insurance to cover the medical massages that are vital to keep my muscles relaxed, lower co-pays for the medications I need to take, tax breaks for equipment such as a whirlpool, information on where I can be part of a local "positive" support group…and mandatory education for employers…to understand that people with Fibromyalgia are not lazy but actually the opposite…Please try to address more day to day adaptations and coping, and less scientific studies. Send the scientific studies to the insurance companies, etc. so that Fibromyalgia can be acknowledged for what it truly is – not a mental condition but a physical and painful disorder similar to lupus or arthritis, which in turn causes the side effect of emotional and mental weariness. Thank you. – Phyllis


Requesting E-mail Notification and Private Messages

I think being able to receive e-mail notifications for any posts on ProHealth [message board] would be a tremendous help. Simply getting an e-mail letting one know that your comment to a post has been answered would save some energy. And anyone with CFS/FM is aware that conserving energy is priceless! As you know, only the person who starts the post can receive e-mail notification…why not extend that to others who submit comments on the post? Every other forum and message board I have seen has this option.

Also I feel that being able to send and receive Private Messages with e-mail notification from members via ProHealth would be very convenient. I have seen it done on several other forums and it is done in a way that does not expose anyone’s personal information and members have the option to not receive any private messages if they want. It would be a way to follow up on posts…

Thank you for welcoming feedback. ProHealth is a jewel for the CFS/FM community. I am on ProHealth's website every chance I get! – Sean

Note: This is a wonderful suggestion and one we’ve received more than once. We are continuing to work on changes and improvements that should be ready during the first quarter of 2007. Keep that feedback coming!

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