From Our Readers - Comments & Suggestions 06-30-10

Iron Disorder May Cause Macular Degeneration

It’s worth considering for someone with fatigue, joint pain, or brain fog that you might have “out-of-balance” iron. A blood test showed that I have ‘iron overload’ which in my case could be genetic. I give blood regularly to keep the iron under control (this isn’t a disorder that makes you ineligible to give blood).

Macular degeneration seems to run in my family too (the middle part of your vision, right where you focus, begins to get distorted), and I thought this research posted on the Iron Disorders Institute website might interest other readers with eye or iron problems. [“Link between iron overload and macular degeneration under study.”] - T

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Research Suggests Herbal Therapy Just Might Defeat Lyme

Since some here may have Lyme disease…. you might be interested in reading this report in the July 2010 Townsend Letter (“Banderol Herbal Extracts on the Different Morphological Forms of Borrelia burgdorferi.”) – Rich Van Konynenburg

Note: This free full text article, by the University of New Haven’s Lyme Disease Research Group, concludes, “Here we have provided evidence that two natural antimicrobial agents (Samento and Banderol extracts) had significant effect on all three known forms of B. burgdorferi bacteria [spirochetes, round bodies, and biofilmlike colonies] in vitro. We have also demonstrated that doxycycline, one of the primary antibiotics used in the clinic to treat Lyme disease, only had significant effect on the spirochetal form of B. burgdorferi.”

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Omega-3 Fish Oil & Hearing Loss

Re: "Consumption of omega-3 fatty acids and fish and risk of age-related hearing loss"

Every oldster in our family has ended up with hearing aids & saying "what?" with the TV turned way up, so the chance to cut the risk by 42% seems like one great reason to eat more fish & take fish oil. - S

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Great for Creative Artists - The Web-based Sketchbook Project

If you like to draw or create art, check out the Art House Co-op website (http://arthousecoop.com). It has links to all sorts of online projects, facebook groups and artists’ sites. I found it through a post on the Hunter Hopkins Center Facebook, and I & some support group friends are going to chip in to do an entry in the 2011 Sketchbook Project. (Here’s a link to a video about last year’s project - http://edition.cnn.com/video/data/2.0/video/living/2009/04/27/barral.sketchbook.project.cnn.html) - R

Note: Anybody – from anywhere in the world – can be a part of The Brooklyn Art Library’s Sketchbook Project (we would really call them “art books”). Choose a theme, ask to be sent a sketchbook by Oct 31 (cost $25, with discounts for groups), and return it so it can go on tour in libraries and art museums across the US. If you want to sell your entry, indicate a price and someone could buy it. You can ask to have your sketchbook digitized or made into a poster for a fee, and it will be included for viewing on the BAL’s website. - J

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Rik Carlson's Patient Documentary - "Invisible" - Available Now

Rik Carlson, president of the Vermont CFIDS Association, has created a documentary that tells the story of ME/CFS from the patients’ point of view. It’s titled “Invisible” (http://invisiblethemovie.com/invisible_movie.html) and it hammers home the reality of ME/CFS/FM patients’ debilitation and struggles, for the edification of the public and healthcare community. “I made my family sit down and watch INVISIBLE with me… They treat me differently now,” one patient says. The price is $19.95 and profits go to the Vermont CFIDS Association. - Y

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Statin Drugs & ME/CFIDS Relapse

Re: “Unintended effects of statins in men and women in England and Wales”

I'm glad that additional studies on the effects of statins are being done, and think there should be more. As I've commented before on this website, I descended into severe ME/CFIDS after being put on statins when my cholesterol had skyrocketed by 100 points in six months despite excellent diet and exercise.

I learned in other research that it is not uncommon for this to happen with this illness before major relapse, and that the theory is that the body is producing more cholesterol needed for healthy cell membranes to inhibit viral replication and improve cellular metabolism.

I also question if the standard liver function tests are enough, that maybe endocrine function should also be measured because the liver doesn't just metabolize lipids/fats, it also fights pathogens and creates most of our hormones.

I had the double injury of being put on birth control pills at the same time to manage other health conditions, but on reflection I see that my poor liver could not handle all of those tasks at once.

In subsequent cholesterol research, I've learned that tests on statins have been more common with men (aimed at how heart disease presents in them), and not in women, which could be a big factor in this lack of vital info about side effects.

My aim here is to help my fellow patients have information and questions I wish I'd had before being knocked out of the working world and into disability. - C

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Chocolate - Body's Way of Self Treating Depression?

This article ["Life is Like a Box of Chocolates" at BrainBlogger.com] reports on a big study that found depression-scale ratings pretty much track amount of chocolate eating, and it's the same for men as for women. I wonder if eating a lot of chocolate is a sign of depression or accidental self-medication. - P

Note: Research indicates that a molecule found in chocolate and made in the body - phenylethylamine, or PEA - does seem to be a natural mood-elevating substance. See "Mood-lifting effects of a chocolate binge without the sugar and guilt."

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Unbiquinol CoQ-10 Works Better for Me

Re: “Ubiquinol – A More Advanced Form of the Energy-Producing Nutrient CoQ-10”

I believe ubiquinol is absolutely wonderful. I compared my use of 300 mgs of ubiquinone to 100 mgs of ubiquinol. The ubiquinol outperforms the ubuinone at 100 mgs. I am 56, so that may be the reason why, as it is more difficult to convert the older you are. I can't say enough about it! - A

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Unraveling Autism's Complex Genetics Requires Help of Many Families

The Interactive Autism Network is actively working to get more families involved in genetic autism studies. (See “Using the Web to overcome the lack of genetic samples in autism research.”) In the US, parents can fill out a questionnaire & consent form online and take their kids to any of 1,600 designated blood draw sites.

There’s a lot more on the Interactive Autism Network site, like an article on how autism might be “a more extreme form of human male intelligence.” – W

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NIH's $8.9M Investment in IBS Research - Should We Be Glad or Mad?

Re: "Behavior Therapy Helps Control IBS"

• Our Illness is Physical, Not Mental - Unfortunately, the government is using our tax dollars to fund behavioral therapy for IBS on the basis that IBS is a mental illness. Cures are a threat to profits. Because our government is in bed with Pharma, research dollars are spent on psychological and genetic trials for diseases that are physical and caused by the environment. "A patient cured is a patient lost" and the medical establishment, which only profits when we are unhealthy, certainly doesn't want that. It's just bad for business. - T

• My IBS-D is Stress Related - I find that you can go into various ailments, like migraines for instance, and find people that are impacted in so many ways and have different triggers.

I've found that people with IBS can be IBS-c, IBS-d, or IBS-c and d. Everyone has a different story and different triggers. My IBS-d is documented as stress related. That is so very true and I believe there are others that may have the same situation. Stress that so impacts the body would fall under the mental health ailment category of research and I could fully understand research on that. We're not all cookie-cutter standard and can't be pigeon holed as such. Our ailments can impact us in different ways and can be caused by various things which is why research is done in various directions. - Y

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Missouri is Pilot Testing Pain Foundation's FM Awareness Project

The American Pain Foundation is pilot testing its “Is Fibro the Cause?” project in Missouri, where ATF is working with community and state-level alliance groups and fibro advocates to give presentations and disseminate the Is Fibro the Cause? toolkit (a booklet). If you want to print the booklet out, go to http://www.painfoundation.org/learn/publications/files/is-fibro-the-cause.pdf. It takes some time to download. - F

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CFIDS Assoc. Jul 15 XMRV Webinar to Feature Drs. Bateman & Racaniello

The CFIDS Association of America has another webcast coming up July 15. Registration is limited, so get signed up ASAP at https://www1.gotomeeting.com/register/702564801. Dr. Racaniello is a high-profile virologist at Columbia and Dr. Bateman is of course a beloved ME/CFS/FM/MCS doctor. She is involved in XMRV research, and with an XMRV article expected from the NIH & FDA, it should be a good show. If you miss the webinar, the CFIDS Association offers videos of all its past programs at http://www.cfids.org/webinar/series2010-past.asp - S
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Note: This information has not been evaluated by the FDA. It is generic and anecdotal, and is not meant to prevent, diagnose, treat or cure any illness, condition, or disease. It is very important that you make no change in your healthcare program or health support regimen without researching and discussing it in collaboration with your professional healthcare team.