From Our Readers – Comments & Suggestions 03-17-10

Vitamin D Important for ME/CFS Patients

Re: The article “Serum 25-hydroxy Vitamin D Levels in Chronic Fatigue Syndrome: A Retrospective Survey”

This article in the ProHealth library caught my attention. In the UK, the average vitamin D level in CFS patients is much lower than it should be. The researchers were concerned about osteoporosis risk. Then I read about the study that discovered the T cells need to use vitamin D to fight infections. So I wonder, which comes first, not getting enough vitamin D or the need to use a lot of it up because of infections? Either way I’m going to supplement and get out in the sun. – G


My Breathing Problems with ME/CFS

My breathing problems feel like “air hunger” (which I’ve read is common with CFS), in which I feel like I can’t get a sufficient breath of air; like I can’t get that satisfied deep breath or yawn. It almost feels like a mild panic attack. Over the years, I have come to find out that a B vitamin deficiency caused my breathing problems. I take a B complex now, and have no more problems with breathing.

Also what helped me are deep breathing exercises; I was taught at Uchee Pines Health Institute [Alabama] to inhale for four seconds, hold it for seven seconds, and then breathe out for nine seconds. This has a refreshing feeling benefit also. Before I learned about the B vitamins, I tried probiotics, which seemed to help some too. There’s nothing more frustrating than trying to get enough air, and feeling like you can’t! – D

Note: For more information on effective breathing exercises, see for example “The Importance of Breathing Patterns in ME/CFS (and Fibromyalgia)” by Blake Graham.


WPI Study: Did You Become Ill After a Transfusion?

Did you get ME/CFS or another neuro-immune illness in the past 7 years after a transfusion? The Whittemore Peterson Institute is collecting names and information for (a transfusion study). – N


Arthritis Foundation Announces “Early Diagnosis” Study

To Whom it May Concern: The Arthritis Foundation is looking for individuals in Massachusetts who’ve had joint pain & swelling (e.g., in hands/fingers) for less than 3 months. The thinking is that the earlier you diagnose arthritis the more it can be controlled. Participants are asked to complete a confidential survey online and will receive a free examination and blood tests. To see if you’re eligible for their “early diagnosis study” you can start here. – M


Mikovits XMRV Seminar – Transcript Plus Slides

I really appreciate all of Sandy Miarecki’s work to put together a script with slides of Dr. Mikovits’ January 22 lecture on XMRV and CFS. Looking at those nice clear slides & words together makes all the difference. I printed out a lot of the slides to help me explain the findings to my family. Thanks, Sandy! – U


Thousands of Reasons to Check for Drug Interactions

Q: Could I take lipitor and metformin at the same time?

A: You’re wise to ask. For this and more information, try a drug interaction checker such as the one offers ( Apparently there are various formulations of metformin, as this is a generic name. We searched on plain metformin but you would want to search on the brand name of your prescribed drug if it is not the generic.
No interactions came up in this database, though notes “this does not necessarily mean no interactions exist. ALWAYS consult with your doctor or pharmacist.” (We recommend making an appointment with the pharmacist at your local medical center or pharmacy to review all your medications every time you will be making a change or adding or changing the dose of a medication, as they will be most up-to-date and have the best computer databases to go by.)
There is a great deal of info on the site. Specifically, regarding the two drugs you mention:
The cholesterol-lowering medication Lipitor (atorvastatin) is known to interact with 204 drugs (909 brand & generic names).
The oral blood sugar control medicine metformin (prescribed mostly for persons with type 2 non-insulin-dependent diabetes) is known to interact with 587 drugs (total 4,043 brand & generic names) listed as posing major, moderate and minor interactions.
“Food/lifestyle interactions” and “disease interactions” are also listed for each drug. For example those with kidney disease, or an upcoming scan using an injected dye should not be using metformin, and one risk with cholesterol lowering drugs is gallstone formation. (Diabetes patients have a greater risk of gallstone formation.)


Hormone Replacement Therapy and Cataracts Linked

I have been considering HRT, but had second thoughts after reading that it can raise the risk of developing cataracts later. My mom took hormones for quite a few years and had to have cataract surgery at a relatively young age, so that rings a bell for me. – M


Spring Forward? Not So Fast!

For all of us who suffer with seasonal depression (SAD), here’s an article about the daylight savings time change that could be really helpful. (“Daylight Savings: Not a Bright Time for All,” ) Light earlier in the day is most helpful for SAD, so getting up an hour earlier might even set us back a notch or two, especially if we’re on the Western edge of a time zone and in a Northern area, as I am. – W

The Mushroom Connection

There is a lot of truth to high doses of vitamin D helping the immune system… Shitake Mushrooms have the highest concentration of vitamin D in the world. And it was high doses of Shitake mushroom extract that saved my life when I first got sick with CFIDS/ME in 91. Seriously high doses. I had to take twenty pills a day for a long time. I would not be alive at all if it weren’t for shitake. I was bedridden with encephalitis from this disease. Shitake was the only thing that got me out of bed. – T


UK ME/CFS Patient Care Roundly Criticized by Parliamentary Inquiry

I read this in the“Parliamentary group hits out at lack of support for ME sufferers.”  An all-party group evaluated England’s National Health Service performance in supporting ME/CFS patients and came down hard. They highlighted deep concern about “the poor knowledge that many doctors have about this illness.” – L


Talking Books are Free & Plentiful – Participate without Leaving Home

If you have physical disabilities and especially if your eyes aren’t so good or it’s hard for you to hold a book, the National Library Service Talking Book Program could be for you. ME/CFS patient Laura Hillenbrand did most of the research for her best selling book Seabiscuit using talking books, and you can access more than 70 popular magazines too. You can get started through the NLS site, and its organized through library systems, so you can just ask your local librarian about it. – L


Great Site for Sleep Disorders

The following site has lots of information on sleep disorders as well as a message board ( – G

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 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 with your professional healthcare team.

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