From Our Readers – Comments & Suggestions 05-04-11

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Honoring World Lupus Day – May 10

The World Lupus Day website [] has a world map. Click on your area to find links to sites with information about local activities. For example, the Lupus Initiative in the US will feature some of the videos that patients have submitted to tell their personal stories, beginning on May 10. – G


MCS T-Shirt Contest – Submit Idea by May 10 for a Chance to Win

MCS America is having a t-shirt designing contest for MCS Awareness Month! Designs can be words and/or drawings or photographs as long as they are your own design and not copyrighted. The design should be 10×10 in jpeg or gif format. If you have a phrase or sentence you’d like on a design, but don’t have the software to design it, we will design it for you. Just send us the idea!

Designs must be received by May 10th for inclusion. The winner will be selected by our readers on May 15th and featured in our June newsletter. Submission indicates understanding that designs may be sold on Cafe Press by MCS America at Cafe Press cost. MCS America does not mark-up the items for profit. The winner will receive a free yellow t-shirt with their design.

Send designs to with your name and email address. Happy Designing!

–  MCS America (


The US Opioid Risk Mitigation Program and You

Re: “Impact that governement efforts to reduce prescription drug abuse may have on chronic pain patients,”  by Karen Lee Richards

People who are diverting prescription pain medications are not people living with chronic pain! Even doctors who know the difference very well may be influenced by this crackdown, and reducing our ability to get needed help won’t stop the illegal drug trading problem. – T


Coenzyme Q-10 & Fibromyalgia Symptoms?

Re: “Coenzyme Q-10: A novel therapeutic approach for Fibromyalgia?”

I’ve been CoQ10 for years. It’s good cardiovascular support and also good for keeping blood pressure within good limits, circulation, etc. I’ve wondered off and on about CoQ10, but think more and more it’s essential and especially as we age. – J


How to Talk with Your Doctors About ‘Alternative’ Therapies

Re: “Time to Talk” tips to help patients & MDs explore non-drug options

Time to Talk is an educational campaign to encourage patients – particularly those age 50 or older – and their health care providers to openly discuss the use of complementary and alternative medicine (CAM). When patients tell their providers about their CAM use, they can more effectively manage their health. When providers ask their patients about CAM use, they can ensure that they are fully informed and can help patients make wise health care decisions. Simply put – it’s time to talk!

National Center for Complementary and Alternative Medicine (


Researchers Track Life with Chronic Pain

The Media Gallery features videos of people discussing their pain and how it affects their lives. Back pain, hip and leg pain, cancer pain, and so on. This is part of their year-long  “Pain Story” tracking survey to develop a picture of how people coped with pain – how they felt, where they looked for help, treatments, and results.  – M


‘Autoimmune Groupies’ Blog

Found Suzanne Mahinski Bennett’s “Autoimmune Groupies” blog through a link on the Pain Foundation Facebook. She has mixed connective tissue disease, including Lupus, RA, and more, and she takes “a sometimes comical look” at life with antuimmune illness. I love the cartoon she included in this blog on learning to self-inject as part of a drug study: “You’re just going to feel a little pinch. Then a…” – R


Video on What It’s Like to Have ME/CFS

“What is it Like to Have ME?” This video is the best explanation I have seen of what it is like to have ME/CFS. I’m sharing it with my family and my doctor. – L


Gluten Sensitivity and Low Thyroid Strongly Correlate

Re: “Gluten free but still feeling ill? Here are some answers.”

It’s so true, as Dr. Vikki Peterson says, that nutritional absorption problems caused by gluten sensitivity/celiac disease don’t “turn around” overnight when you stop eating gluten-containing foods. I was also interested to see [this video] where she explains that 40% of people with gluten intolerance also have thyroid disease (I do). If you have one of these conditions, get checked for the other. – W


Alternative Medicine Doctors, Medicare & You

This Letter to the Editor in the Canary Report  [“Alternative physicians opting out of Medicare no longer allowed to provide full services to patients” ] warns people with MCS that if their alternative medicine practitioner doesn’t take Medicare, the practitioner also can’t write prescriptions, order lab tests, X-rays, or ANY tests for patients on Medicare paying cash, or even make referrals to other doctors. Can this be true? – C


Fibromyalgia Management Advice for Doctors

Re: “Managing Fibromyalgia: Supporting self-management brings many advantages,” by Bob Kirsch – an article with guidance for physicians in Managed Care Magazine.

I printed this article out for my doctor. It verifies that “there is no longer any question about whether fibromyalgia syndrome is a specific illness – the FDA itself states that these are patients who have gone through a change in the way their brains perceive pain.” He explains some methods doctors can use to build fibro patients’ trust & respect, how to convey emotional support, and “four ways to relate to Fibromyalgia patients.” – P

[Note: There’s also a commentary & opinion piece at that takes off on the Kirsh article (“Overcoming Barriers to Managing Fibromyalgia”).]


Thinking of Trying Spinal De-Compression for Back Pain

My new chiropractor has three spine de-compression tables and they are very busy with people each time I’ve gone in there in the last four treatments so far. I’m going to give it a try soon. People seem to LOVE it and it helps to de-compress their spines. They usually stay on the table for 20 minutes or so. Usually very slow and gentle power from the table. – J


Difficulty of Getting Celiac Diagnosis

Re: “My Long Road to a Diagnosis of Celiac Disease,” by Julie Wendell

I have had Crohn’s Disease for 44 years. No medications helped no matter how long or which drug I took. 1-1/2 years ago I started a clinical study with a new infusion. Thinking of seeing two GI’s sounded like a waste of time. I transferred to the doctor doing the study. Being his new patient he did a routine colonoscopy and endoscopy. He immediately found out I had Celiac Disease also.

All those years of pain and suffering were alleviated by switching to a gluten free diet. My Crohn’s pain was cut in half! I am sure now that it wasn’t all pain from the Crohn’s. I can now do things like go shopping at the mall or go to the movies! I was told I had bi-polar disorder, depression and panic disorder. Even that has subsided! Having Celiac Disease actually saved my life. – J


Note: This information has not been evaluated by the FDA. It is general and anecdotal, and it not meant to prevent, diagnose, treat or cure any illness, condition or diseae. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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One thought on “From Our Readers – Comments & Suggestions 05-04-11”

  1. Sandy10m says:

    The most difficult thing about a gluten-free diet is FINDING the gluten in foods. The labeling is confusing, and much gluten is hidden in the ingredients. For example, who would think that soy sauce is a big gluten criminal? When looking at the ingredients, you see: Water, Wheat, Soy. So, if you’re trying the gluten-free diet without much success, perhaps you aren’t getting rid of all the gluten after all. Changing to a Caveman (Paleolithic) diet for 3 weeks can be life-altering. Meats, nuts, veggies, fruits: that’s pretty simple. Also, if you have gluten-intolerance, you probably have other intolerances too. An elimination diet might be the ticket there. For this, I start with the Master Cleanse for 7 days. If you feel much better and with more energy at the end of 7 days, then you likely have multiple food intolerances. Add back the foods one at a time, even the ones you’re sure are okay, because the sure-foods are the most likely intolerant foods. My current intolerances (which rotate from time to time) are gluten, corn, onions, grapefruit, MSG, and green peppers. Check it out for yourself.

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