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Letters From Our Readers - Comments & Suggestions 04-23-08

  [ 620 votes ]   [ Discuss This Article ] • April 21, 2008

NADH Makes My Life Better

I have been taking NADH for CFS for years and have considered myself "cured" for the past 10 years. I was recently on a trip to stay with an ill relative and I forgot to pack my NADH. Within five days, the old "brain fog" began to appear. It continued to worsen until I had trouble finding words and was feeling really foggy. On my return home, I started back on NADH and my symptoms began to disappear. If I ever doubted its efficacy and/or that I still had Chronic Fatigue Syndrome, I am now positive that NADH makes my life better and that Chronic Fatigue Syndrome is still in me sleeping. – Jane



Another Benefit of Greens/Magnesium in Diet

Re: Dr. Charles Lapp’s mention in his recent Live Chat that magnesium is one of his favorite supplements for ME/CFS & FM.

A new study indicates magnesium can reduce your risk of gallstones. See “Integrative Way: Make magnesium part of your diet,” in the Sunday, April 13 Sacramento Bee ( – Sue



Empty Chair© Project Needs You!

We have been asking the Department of Health & Human Services for the past two years that the meetings of the CFS Advisory Committee (CFSAC) be recorded or be broadcasted in “real time” for the many who can’t go to Washington, DC, to attend in person.

In order to create awareness of this issue, P.A.N.D.O.R.A. created the Empty Chair© Project, in collaboration with a growing number of other patient organizations. During the last two meetings of the CFSAC we placed large pictures of individuals who have ME/CFS and their family members in the empty chairs that are so common during these meetings.

The next CFSAC meeting will be held very soon - May 5 & 6 - so please let us help you demonstrate your personal support by filling an empty chair with your picture. - Marly Silverman, P.A.N.D.O.R.A. President

Note: To learn more about this important project and how you can fill an empty chair, click here.



A Few Things That Have Helped Me

I was diagnosed with ME/CFS and FMS in January of '07. I don't have any money to try different protocols and treatments, but I have tried a few, and here is what has worked best for me so far.

1. First of all, I do agree we need to stay positive! It helps in all areas of health, because our body responds to our attitude; negative attitudes have negative effects on our body, and positive attitudes have positive effects.

2. After trying anti-depressants to see if they would help with pain and sleep problems and finding that none of them did, my doctor tried 3mg of melatonin. I take one about thirty minutes before I go to bed, and it helps tremendously with sleep issues.

3. Probiotics have helped me in so many areas. When I first started taking them, I improved for four days until I was thinking I might be going into remission. That was short-lived; my ME/CFS & FMS symptoms came back with a vengeance. But I have noticed some huge benefits that have stayed:

  • A little decrease in pain, or I'm better able to handle the pain
  • Less problem with constipation
  • My acid reflux problem is almost gone
  • Much better digestion
  • Greatly improved sleep
  • A little reduction in my extreme, bone-crushing fatigue
  • Better able to handle cold and heat
  • Less brain-fog.

Hope this will help someone! P.S. I also tried Lyrica for pain for two and a half months but it caused severe dizziness; my doctor took me off of it right away. It also did nothing to ease my pain… - Debby



Visual Noise Unpleasant

The website has gotten progressively noisier visually. This is a very unpleasant experience for some of us. I used to do some browsing but now I just get in and get out. – Marcie



Physical Therapist Helped

Have had CFS for over 20 years...In the beginning I used to 'chase' help by flying to see Dr. Cheney and others, thinking I could 'resolve' this. …I've found that these things have helped, although I am still not able to work:

  • Exercise helps. In the beginning it is very, very difficult. I worked with a physical therapist, and in time improved a great deal. In the beginning, it got far worse before it got better, but I continued. It was difficult because I felt so much worse in the first month, but I had an excellent doctor who advised...'Just keep doing it daily...'
  • I now work with a personal trainer once a week and do a very safe weight work out called 'super slow'...Google it if you're interested in a safe way to improve your muscle strength. The more muscle strength you have THE LESS ENERGY it takes to 'do' something, meaning you'll have more energy to do more things.
  • I keep my weight very, very low and don't eat processed foods. I try and eat organic as much as possible, and eat no sweets. - questus9



Site Provides Key Support

This site has been instrumental in supporting my struggle as a victim of ME/CFS with emotional, nutritional and intellectual support not available anywhere else. Possibly my very survival is thanks to - Julie

Note: This information has not been evaluated by the FDA. It is generic 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.

Please Discuss This Article:   Post a Comment 

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