From Our Readers – Comments & Suggestions – 08-11-10

Study of “Mitochondrial Support Diet” & Exercise to Help Multiple Sclerosis

Terry Wahls is a professor of Medicine at University of Iowa and has MS. There’s a really good story about her at the U of Iowa "Be Remarkable" website ( Also a video ( – J

Note: To summarize: Wahls read that in diseases that cause brain shrinkage (like MS and Parkinson’s), the mitochondria are sending premature ‘time to die’ messages to the cells. So she learned what nutrients support the mitochondria and developed a ‘mitochondrial support’ diet that she credits along with exercise and electrical stimulation therapy for helping her MS symptoms.

Her “Wahls Diet” – she’s written two Minding My Mitochondria cookbooks to show how every calorie ‘would contribute to the brain’s building blocks’ – includes 9 cups fruits and veggies per day; 3 cups green leaves; 3 of sulfur-containing food (there are lots of these, from onions & beans to eggs, fish, meat, dairy & cabbage to the supplement MSM); 3 of ‘bright colors’ (not sure how this is different from fruits & veggies).

Now she and some other U of Iowa researchers “plan to see if they can replicate the results. With approval from the University’s human subjects office, they plan to enroll 40 patients in the study. Wahls received a $60,000 grant from Direct MS Charity from Canada and has applied for $2.5 million in National Institutes of Health funding.” If you’re interested there’s a link to her website at the end of the story cited above.


Nerve-Destroying Treatment for Chronic Low Back Pain – Still a Gamble

My doctor has suggested killing the "pain signaling" nerves in some of my vertebra as an alternative to consider for my chronic low back pain. He thinks the pain is from arthritis damage to the joints. Here’s one article he gave me on a study they did at Johns Hopkins that gives some rough odds on the nerve-killing procedure helping chronic low back pain cases like me.  (“Destroy Nerves to Relieve Arthritic Back Pain?”) – H


Article on a Viral Trigger for Crohn's Disease

Re:"Gene mutation linked to Crohn's-like Illness Requires Specific Viral Infection to Kick In"

Perpetual stomach bug explained? This may just explain my family's malady of having the "stomach bug", literally almost every week. Perhaps we actually all have Crohn's. This started several years ago with a particularly vicious attack of a stomach virus, and now, we continue to be reinfected with it, or so it seems, over and over and over. Literally, once or twice every single month. No matter how much I clean the house or do everything you are supposed to do to avoid reinfection. Probiotics do not help, and I wonder if they are not actually making things worse. – J


Will Invest in ME's Push for WPI-Like Research Center in UK Gain Enough Support?

The Invest in ME charity here in the UK has started a drive to create a diagnosis, treatment, biomedical research and healthcare staff training centre of excellence along the lines of the Whittemore Peterson, at the University of East Anglia. [See "A UK Centre for Biomedical Research into ME".] Suggested projects are to identify "all known and unknown viruses present…in a cohort of well defined patients," and "examine the possible link between ME and gut inflammation." Let's hope this project can get off the ground & produce some REAL help for ME patients suffering in the UK. – H


Really Good Chocolate for Sugar Avoiders?

I found David Mendosa’s diabetes shareposts through the ProHealth newsletters – thanks, I enjoy them! I found this article that my fellow chocoholics might like [“Sugar Free Chocolate”]. – C


Seven Ways Arthritis is Misdiagnosed

Here are seven "red flags" that your aches & pains could be misdiagnosed, from Arthritis Today ["Misdiagnosed?" by Brenda Goodman]. For example, one woman's RA pains were diagnosed as everything but by 13 Drs for 20 years! The reader comments are worth reading too. – D


Drug Safety & Side Effects Site Useful for Fibro Patients

I checked out the drugs I take for FM on this free "drug-monitoring" site ( There are hundreds of patients' comments and there's a lot of information on each drug that seemed easy to understand. (To get statistics, they poll almost 25,000 people who take Lyrica/pregabalin – – for example, and they report on side effects, satisfaction, and so on.) You can get a summary of information on any interactions between the different drugs you are taking, but you have to log in to get that. – P


Whooping Cough Alert Expanding in Peak Season

There's a whooping cough epidemic here in California and a lot of states, but I was surprised to learn that pre-teens should routinely have a booster shot and adults should too if there's an infant in the family. I didn't know it could start out like a cold (never have seen an actual case of WC), and that adults could have a long-lasting cough – for weeks! – and not even realize what it is. – B


Areas with High Rainfall & Flooding Too Moldy for Comfort!

With all the wet, hot weather and flooding this summer, the mold count in the Chicago area got to the high alert level this week – at about 50,000 spores collected in 24 hours, which means people with allergies should stay indoors. Loyola Medicine here in Melrose Park tracks pollen & mold levels from their roof every day in allergy season []. – L

Note: The American Academy of Allergy Asthma & Immunology website reports pollen and spore levels for most counties in the US. Just click on your location to see the most recent report.


Nominations for New CFS Advisory Committee Members Due by Sep 15

The CFIDS Association has posted information about the need for members of the ME/CFS community to nominate replacements for 5 CFSAC members who will be rotating off April 1, 2011.(Drs. Christopher Snell (current chair), Nancy Klimas, Lenny Jason, Arthur Hartz, and Ronald Glaser.) Anyone can nominate new members, and nominations are due by September 15. The CFIDS Assoc. and others will be posting their nominees for these posts in the weeks ahead. – W


Sign Up Now for Bruce Campbell's Fall CFIDS & FM Self Help Program

The CFIDS & Fibromyalgia Self-Help Program is currently accepting signups for the winter session of the CFIDS & Fibromyalgia Self-Help Course. The course, which begins Sept 13, is a 6-week email discussion group that focuses on practical strategies for managing common problems of CFIDS and fibromyalgia. The cost of the course, which includes a copy of "The Patient’s Guide to Chronic Fatigue Syndrome and Fibromyalgia," is $30. Visit our website to learn more and to register:

We offer a limited number of partial scholarships for low-income patients wanting to take our course. The deadline for scholarship applications is August 16. For more information, see:” and please read the instructions carefully.

Bruce Campbell, Director
CFIDS & Fibromyalgia Self-Help Program


New Chronic Pain Drug Trials at Columbia

Re: "Good News! New drug may turn off chronic pain without addiction or tolerance problems; trials at Columbia"

•   New drug (N60) for pain sounds very promising. I have been suffering with Fibromyalgia for over ten years and would welcome relief from the chronic pain. I had been put on opiates, but decided to get off them 2 years ago. They work for a while, but in the end became like a tiger chasing its tail. I hope this new drug is not like so many that are out there that have so many side effects. I look forward to hearing more about it in the near future. It would be so wonderful to actually have a day with NO pain. Hopeful!  – D

•   I believe it is wonderful that they may find such a drug to help those of us with chronic pain. However, I do not agree that addiction is a common problem with people who take narcotics for chronic pain. Maybe it is not the best solution if this new drug works. But I am very pro-narcotic for chronic pain. Studies have shown that less than 2% of people who take narcotics for chronic pain ever become "addicted". There is a big difference in "addiction" and "dependence". Yes, I am narcotic dependent to fight pain but I am not an addict. I do not have addictive behavior. I do not "crave" a narcotic nor do I take more than prescribed or more than is needed for the pain itself. I do not take a narcotic for a "high". I am fed up with all the media bashing of narcotic pain meds just because so many people choose to abuse them especially in the circle of celebrities.

We never hear of people who take naroctics safely and efficiently for years to control pain adequately. We only hear the negative side of the drugs. This is specifically why it is true that now many physicians would rather let someone suffer chronic pain rather than prescribe a narcotic drug which would help them. If the new med being tested arrives on the market and works, I am all for it. But I am just offended by the bad reputation of people who take narcotic pain meds for real pain and take them legally and as prescribed in order to have some quality of life. – D (RN & Fibro Patient)

•   Hurray! Turn my pain off! What a blessing that would be, right? To move freely outside of water and not feel pain – a dream come true and I believe we will see the day if not in my lifetime, it will happen. Patience and optimism aren't always present in my life, but when they are and I can muster the strength to fight the pain, it's so worth while!! Keep researching for us, please!


UK Reporter Tries Transcranial Electronic Stimulation

There's been a lot of talk on the FM message board over time about using Alpha Stim [transcranial electronic stimulation] for pain – clip the wires onto your ears and the weak electrical signals are supposed to increase alpha brain waves and calm pain signals. Here's an article on it by a reporter for the Telegraph who was interested in seeing if it could help anxiety. ( – K


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

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