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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3 thoughts on “Letters From Our Readers – Comments and Suggestions 12-06-06”

  1. Pamby says:

    I can sympathise and be angry along with the woman who was disappointed about a test costing $500. I have been having a lot of problems of my own, especially in trying to get treatment and competent treatment.

    I have had CFS/FM/Depression all my life. It is NOT TRUE that it does not get worse. It DOES get worse and that is what finally drove me to a new doctor and begging for help. She diagnosed me with both CFS and FM and sent me to a rheumatologist.(sp) What a jerk. He said I definately had FM but he wanted to hold off on the CFS diagnosis because it would keep me out of a clinical trial he wanted to put me into that day because the enrollment period was closing. The trial was Lyrica for FM and it did not work for me. I was booted out of the trial after about six weeks. The doctor started treating me like crap, wouldn’t do anything other than prescribe Ambien and Ultram and couldn’t rush me out of his office fast enough. He also never paid/compensated me for the time I spent in the trial. He just pocketed the money he got for me being in it. He was also a slimeball. He always made me get undressed and always had his eyes on my tits. He also did not wait for a female to be in with exam room with me. So I guess he is no big loss. BUT I can’t find another doctor who will help with the FM/CFS. Out of desperation I went back to the slimeball and he refused to see me because I am on Medicaid now. I was on a form of medicaid before when I was seeing him! I had a minor daughter at the time and was enrolled in Medicaid Healthy Options managed by Molina Healthcare. Now I am on Medicaid GA-X (disabled) CNP (catagorically needy)that pays for just about anything and I can’t find a doctor in the Seattle area who will see me. Let me correct that, I can’t get passed the person who answers the phone who is NOT the doctor that will not let me come in to see him. I have been told everything from “the doctor will diagnose FM but does not treat it” “the doctor only takes $3000 cash” “the doctor does not accept medicaid” “the doctor does not treat anyone under 55” “there is no such thing as GA-X” and many other things that fall between.

    How How HOW am I supposed to get help????

    1. incatnito says:

      Pamby, I pray today 2008 that you have found a treating physician. I myself went from working in the hospitals/physician’s offices as a medical transcriptionist to being unemployable, now on SSDI and Medicare. During my employed years, I had decent medical insurance and dealt with caring physicians. Having been on SSDI now for 3 yrs, I can tell you I have had numerous slaps in the face, have been treated like a drug seeker, accused of “looking too well to be ill”, etc. I am increasingly running into physicians that will not even accept Medicare. In addition to the FM, I have had back/neck fusions and other mulitiple ortho procedures. I also have Hepatitis C. The discrimination abounds with FM/CFS, throw HepC on top of that with all the mis-information people have, and, well, you’ve no easy road to hoe. I can only hope that physicians who treat us shoddily will one day have their day of reckoning. As well all know, life can change in the blink of an eye. Be as well as you can, despite them all.

    2. Pamby says:

      Thank you for your reply and comments.
      I have since found out/been told that there is a shortage of rhuematologist’ in the Seattle-Tacoma area. And of course, the once that do exist do not take medicaid.

      I have found out that it was possible for a neurologist to treat me for FM– and when I asked my neurologist if it was possible she agreed wholeheartedly and told me I should have come to her sooner! I was floored! At the same time I want to weep for all the time wasted that I could have been building a case history needed for SSI/SSD. I have so many health problems that DSHS made me an automatic applicant for SSI/SSD.

      Being on medicaid is a huge catch-22. You can’t get help trying to use them, but you need to build a case history of disease but you can’t build a case history if no one will accept your insurance—-etc..

      I can get drugs out the ying yang… nothing that really helps, they are prescribed for other health problems with the hope they at least take the edge off the FM/CFS as well- ie: make me pass out.

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