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Letters From Our Readers - Comments & Suggestions 2-14-07

  [ 153 votes ]   [ Discuss This Article ] • February 14, 2007

These "Orphan Diseases"

I very much appreciate the e-mail newsletters that I receive from you. You have literally helped me so much not only in the post-diagnosis period of my diseases, but also in keeping myself armed to the teeth with information to share with my physicians.

I practically had to diagnose myself in the Fibromyalgia and CFIDS department! Fortunately my primary physician not only observes, but listens and believes what I say! I print out a lot of your articles to take to him to aid him in his practice of pain management for those of us with Fibromyalgia, CFIDS and Restless Legs Syndrome...Unfortunately, he also diagnosed me with Multiple Sclerosis. It is really hard to figure out which illness is the cause of that particular day’s pain!

I discovered a couple of months ago that MS as well as FMS and CFIDS are considered ‘orphan’ diseases, and that is why the government does not fund as much research in those areas…Keep up the good work! – Jan


Ten Healthiest Foods

Please repeat “Ten healthiest foods.” – Art

Note: This is a great idea! But we’re not sure that we’ve run this article. We couldn’t bring it up searching on these words in the archive. We do know the Mayo Clinic offers a 10 healthy foods list that many have reported on – and we could, too. It’s at [ ]


A Little T-Shirt Humor

This is for the person who wrote about the comedian and the flippancy about our suffering with ‘CFS.’ I am no comedian, but one day, lying on my bed thinking desperately about how to get around the conundrums that place the responsibility for public awareness and education on the shoulders of the severely ill, I made up this CFS joke, which says a lot about public awareness. Imagine it on a t-shirt.

Front of t-shirt: "How many CFS patients does it take to.... "?
Back of t-shirt: "CFS - it's no joke. We need your help to finish our sentence. – Life sentence, that is."

The joke is meant to point out that we are too sick to do this on our own, of course - and that we need awareness and help from our society to end this conundrum… – Linda


Marshall Protocol “Not for Everyone”

I would very much like to point out that the Marshall Protocol is not for everyone. My specialist looked at it in great detail, but because my Vitamin Ds, both of them, were at such a low level, he said it would have been lethal for me to participate in the MP. Yet your article [Amy Proal’s account of her experience with the MP, at ] does not even mention that it is not for everyone, and I would very much like to point that out…And I would also like it to be known that many of us are unable to take part in the MP, and to have it stated on up and coming articles. – Colin

Note: Thank you very much for your very important suggestion, and we have added this point in the story’s introduction. As our basic disclaimer explains, we in no way endorse the Marshall Protocol or the underlying theory. But patients with CFS who might be interested in exploring information about this protocol with their physicians should be aware that, as currently described, it calls for certain “preliminary” or “screening” laboratory tests. Note the ‘addendum’ Ms. Proal has added to her story providing more detail on these tests.


MP Reporting Damaging the Cause

Your continued reporting of the so-called "Marshall Protocol" is very irresponsible and potentially dangerous and damaging to the cause…. The CDC says there is no evidence that CFS is caused by mycoplasma, and [there is] no scientific basis whatsoever to believe that it does. Using antibiotics over long periods of time in "pulsed" fashion is simply a way to make sick patients sicker and breed new forms of antibiotic resistant bacteria… Please stop reporting this garbage and stop endangering the lives of naive people by promoting hucksters… – Christopher

Note: We try to present information about a number of different treatment options that are available. No single treatment has yet been found that works for all ME/CFS patients, but it’s hard to ignore the fact that many patients have reported improvements with the Marshall Protocol. As with any treatment protocol, we encourage patients to discuss the pros and cons with their doctors and consider it carefully before proceeding.


She’s at 30 Months on MP

Thanks for Amy Proal's update about the Marshall Protocol. She did an excellent job of explaining it… Patients have a tendency to doubt any one person's account, but when they know of other successful outcomes, then they start to give it more serious consideration. Our daughter is at the 30-month mark, so she is much further along in her progress than Amy is yet at 20 months, and other patients are usually very curious about longer-term outcomes. – Elizabeth

Note: The story of her daughter’s experience can be found at [ ]

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