From Our Readers – Comments & Suggestions 10-20-10

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Neuro Film Festival Needs Short Videos

One in six people is affected by a brain disorder such as Alzheimer's migraine, autism, MS, Parkinson's epilepsy, ALS, stroke. The list goes on & on. Your short video (up to 5 minutes) on a brain disorder topic could be a winning entry at the 2011 Neuro Film Festival in Hawaii (prizes up to $1,000 & a free trip to see your video screened). Help make the case for more brain research. Create or contribute your video to the 2011 Neuro Film festival – deadline Feb 15, 2011. Learn what to do and view some 2010 entries at

– American Academy of Neurology


Important Bladder Pain-Celiac Disease Link

An online quick poll that the Interstitial Cystitis Association ran was answered by 1,000 people who are diagnosed with IC. Twelve percent of them checked that they have also been diagnosed with celiac disease. Another 15% of the respondents checked that foods with gluten bother their IC symptoms.

It isn’t surprising, since lots of IC patients have overlapping chronic conditions, and many find that diet changes help control symptoms of urgency, frequency and pain. Learn more about what foods bother IC symptoms. Review the IC Diet Food List. See the survey at [Note: you can also add your answers to the poll, since it's still open.]

– Interstitial Cystitis Association


Charles Lapp & Bruce Campbell Launch FM & ME/CFS Help Site

The CFIDS & Fibromyalgia Self-Help Program and Dr. Charles Lapp are proud to announce the debut of a new website: "Treating Chronic Fatigue & Fibromyalgia" (

The site is designed to be a source of comprehensive information about treating CFS and FM, combining the best of medical approaches with self-management. Structured as a free self-study course, the site guides people step by step through the process of creating an individualized treatment plan, including treatment options, worksheets and suggested first steps. It includes several dozen success stories. [To get started, go to]

– Bruce Campbell, PhD
CFIDS & Fibromyalgia Self-Help Program (


Too Foggy for Phone?

Adrienne Dellwo [her blog post "Hating the Telephone with Fibromyalgia & Chronic Fatigue Syndrome"] struck a chord with me. I never guessed other people shared this problem. Now I don't feel so strange. – U


Fibromyalgia Research in Indiana

The Fibro Research Team at Indiana University needs your help. We must meet our recruitment goal of 48 subjects by the end of December 2010 for our fourth study in an ongoing series dedicated to fibromyalgia. [Trial of Milnacipran (Savella) plus Talk Therapy.]

Our studies are designed to help individual volunteers while collecting research data to assist the greater good. If you are interested in learning more about this or one of the many other fibromyalgia studies being conducted by our researchers here at Indiana University, please feel free to call our office at: 317-274-1755 or 317-278-3971 or visit us online to see if you qualify at:

Kind Regards and good health,

Janna Hilligoss, Clinical Project Manager
IU Clinical Research Center for Pain and Fibromyalgia
IUPUI Campus, NIFS BLDG., 250 University Blvd.
Indianapolis, IN 46202


Aspartame Headache?

•  I had a very, very bad reaction to aspartame. I'm extremely careful to avoid it. About a week & a half ago I ate 2 small teaspoons of yogurt before I read the ingredients. It was the light variety. It contained aspartame. I must have picked it up by mistake. It caused me to have a very bad headache that centered around my right ear. It also caused my blood pressure to shoot up to 160/100, as well as other stuff. I believe I've got it under control now.… I've got to be a lot more careful. That stuff is poison. "Sweet Misery" video ( – W

•  Aspartame's new name: "Amino Sweet." Many of us cannot use aspartame. For me it created instant brain fog within 2 uses in 2 days…. – V


Restless Legs Syndrome and Mirapex

•  Mirapex is great. I have been on Mirapex for years and could not live without it. That is the only thing that helps with my RLS. They tried to wean me off of it and put me on Klonopin instead but that didn't work at all. I love mirapex. If i run out i can forget about sleep…my legs keep me up all night. – O

•  Mirapex made me so sick I couldn't even get out of bed. I can function to some extent with the pain in my legs, but I couldn't function at all when taking Mirapex. Just trying to sit up in the bed made me throw up. – M

Note: Mirapex is one trade name for the antidepressant pramipexole, which is thought to stimulate dopamine signals in the part of the brain involved in regulation of body movement. See for example "A dose-ranging study of pramipexole for the symptomatic treatment of restless legs syndrome.". In a few patients it has been connected with gambling/risk taking behavior.


Pain Drug Addiction Myths

For anyone dealing with chronic pain, this WebMD article "Prescription Painkiller Addiction: 7 Myths" is well worth reading and printing off. The author, Miranda Hitti, explains how prescription painkiller addiction "is widely misunderstood, and those misunderstandings can be dangerous and frightening for patients dealing with pain." – E


MD Writes on Dealing with Chronically Ill Patients

This "Letter to Patients With Chronic Disease"  shares a doctor's point of view in dealing with patients with chronic illness and some helpful insights into building a good relationship with doctors. – D


Dr. Myhill's Ability to Treat Patients in UK Revoked 12 Months

On October 14, Dr. Myhill’s right to practice medicine in the UK was revoked for a year. Seemingly the medical council judged that she is a danger particularly to patients with illnesses in which she specializes (ME/CFS, FM, MCS, etc.). She does not agree with the notion still promulgated in the UK that these are psychological problems. Perhaps Dr. Myhill should relocate for a time to another country. – J


For Neuroimmune Illnesses, Science is the Only Hope

The advancement of medical research will do for us what political advocacy has never been able to accomplish. It already has and will continue to if we get behind such research with our dollars. How has it changed the advocacy landscape? Will the science evolve as quickly as we wish it to? I have written a blog on the subject titled, "Science Is The One And Only Path Out Of What You Are Feeling Today".

– John Herd (



Here's a MedPageToday October 14 news flash on the CFS Advisory Committee's unanimous recommendation to HHS that Chronic Fatigue Syndrome (CFS) be officially renamed ME/CFS in its reports and research ("CFS Panel Wants Name Change for Disorder"). – N

Note: To listen to the CFSAC's final recommendations session (2-4:30 pm Oct 14) and any other sessions of the 3-day meeting that may be of interest, go to And for a bit of background on the name change issue, see "Why ME/CFS? A perfect name isn't necessary, but a respectable name is essential," and "A Disease in Search of a Name: The History of CFS and the Efforts to Change Its Name."


One Third of People with Fibromyalgia Have Restless Legs

• My [restless legs] was so bad it would wake me up when I could finally get to sleep. I started taking ZMA (zinc, magnesium, vitamin B-6) to help me sleep, well it took about 12 days to start working for deep sleep, along with a low dose of Xanax, and Melatonin. I realized about two months into taking the ZMA that my legs quit twitching, and waking me up. It seems the ZMA not only helped me to sleep deeply, but cured my RLS too! What a surprise. – S

Requip [repinirole] helps me a lot with my restless legs… It is one of those meds that you have to keep upping every week until you get to a therapeutic level. I tried Lyrica and that stuff made me weird out and it didn't do a thing for my pain. – M

Note: No wonder so many people are looking for RLS relief. The latest research indicates RLS may be even more common among FM patients than previously believed – about 10 times the rate in the general population. See "High prevalence of RLS among patients with Fibromyalgia."


Muscle Strength and Vitamin D

My mother is getting help from a physical 'trainer' in her assisted care facility to improve her muscle strength and steadiness. She has fallen a few times but so far hasn't broken a hip. The trainer recommended that she take some supplements to help her bone strength, and then we saw this report about how correcting low vitamin D seems to strengthen hip & leg muscles. Thanks – W


Note: This information has not been reviewed 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 plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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