From Our Readers – Comments & Suggestions 07-29-09

National Fatigue Survey Launched – Please Take Part If You Have a Chronic Illness

The National Chronic Fatigue Survey ( – an internet-based survey of fatigue related to chronic illness – has been launched by the Fatigue Management Institute of Florida Institute of Technology.

The survey is designed to gather information on the nature and impact of fatigue associated with chronic medical disorders. The survey findings will be used to better describe the experience and severity of fatigue related to chronic medical conditions and will contribute to the development of improved techniques for managing fatigue.

The Survey is open to adults with a chronic medical condition, can be completed anonymously, and can be accessed at: The initial report of survey results will be posted on our website in March 2010.

Thank you for your assistance. – Prof. Thom Harrell, PhD, Fatigue Management Institute


What’s Happening with Ampligen®? – Notes on July 22 Hemispherex Teleconference

I listened to part of the teleconference [“Update on Global Pandemic Influenza Prevention/Treatment Initiatives”]. Some points I picked up which seem relevant…:

• Carter [Hemispherx’s CEO] does not expect FDA approval of Ampligen [an investigational immunogen drug] for CFS until fall. He states this is because the Obama transition is not complete and not all FDA appointments have been made. He also said the FDA has been “extremely busy.”

• The company will be working on Ampligen with the CDC as well as the University of Nevada. (I think this means Hemispherx will be using the CDC’s markers as further evidence that Ampligen works, and will take advantage of an NIH grant the University of Nevada recently received. I presume this would go through the Whittemore-Peterson Institute, though WPI was not mentioned.)

• The company is working on an intranasal form of Ampligen.

• …Ampligen is being considered as an adjunct to H1N1 (swine flu) vaccines. Japanese researchers have expressed the most interest in this. Much of the conference dealt with Ampligen and other company drugs as potential vaccine boosters.

• The company is gearing up for greater production of Ampligen, in anticipation of potential deals with vaccine makers. – M


Things That Helped Me Improve Stamina & Quality of Life

There are so many who are in pain, isolated, and in need of help. I know, because I was one of those people for many years. The first four, I was bedfast with CFIDS and FM, without any hope from the medical community of ever feeling any better. But I began to research ways to move forward, and with a lot of trial and error I made some life changes that helped me rebuild stamina and find a better quality of life. (These are: chemical removal, a change of diet, a select group of supplements, some breathing exercises that have had amazing results, and acupuncture.)

I don’t claim that there’s a cure for CFIDS or FM because there isn’t. But I do know from my own experience that there can be hope for a brighter future, so I wrote a little book to share what I learned with others – Find Your Way: A Guide to Healing While Living with Chronic Fatigue Immune Dysfunction Syndrome and Fibromyalgia. It is written simple so it can be well understood, and is sold on or and I hope it will help others. – Clarissa Shepherd


Preventive Trial of Vitamin D and/or Omega-3 – Count Me In

Re: “NIH & Harvard to Conduct Large Population Disease-Prevention Trial of Vitamin D and/or Omega-3 Fish Oil Supplementation”

I am so pleased to see that we are finally studying substances that may prevent disease. I take Omega-3 oil and sit in the sun 15 minutes each day so I’d be happy to participate. – F


Carbon Monoxide is LETHAL

Re: “Even minute, ‘safe’ maternal carbon monoxide exposure can damage fetal brain – UCLA”

This research is really important. I suffered a brain injury from CO. I lived in a condo. I had no recourse as to prove levels under 70 were still dangerous. No one knows CO is cumulative in the blood, and thus low levels are very dangerous.

Get a CO detector that measures low levels – There is no safe level of carbon monoxide in the home or at work. Thanks for posting this! – E


“Bulldog Medicine” Works for Me

I have a bulldog who thinks I’m her world. She goes everywhere with me, and when I have to lie down for a bit throughout the day, she is always at the side of my bed waiting for me. It’s great because she is slow moving and only requires a daily walk, which gets me out there, and the occasional dog park. She is so loved by my family and friends that she is welcome almost anywhere.

So my advice – get a lazy dog who doesn’t require much energy, then dive into loving it so you become its world. You will always have a companion who doesn’t judge your illness. – M


Looking for Article on Managing the Brain Fog

Q: I recently saw an article by a doctor who described our brains as a cluttered attic, and that we had to find ways around in the clutter. Do any of you have a copy of this article because the clutter in my brain (attic) doesn’t remember where I put it? Thanks for the help. – C

A: The article you asked about is “Managing Fibrofog – The Cognitive Dysfunction of Fibromyalgia,” by Dr. Mark Pellegrino. (If you want to print the article out or e-mail it without the marginal matter, look Under “Article Tools” to the right of the title – you’ll see “print page” and “E-mail article.”)


Ideas for the Housebound and Lonely

Finding Compatible Roommates. Call the United Way, ask if there are any support groups for CFS, FM, MS, chronic illnesses… etc. See what you can find. You could call a support group leader and ask him/her to ask around for a fellow… patient who would like to share, maybe a “roommates” apt. Anyone with a chronic illness would make a good roommate, if you take the time to talk to them on the phone, make sure they’re not raving mad, go see where they live (neat, etc.), not obsessively clean, can be calm and serene and not excitable or loud speaking, you know what I mean.

Put an ad in the local paper; ask for a fellow patient, give only phone number… Check out family references, maybe a nurse reference where they see their doctor, ask them to mail you a copy of their last bank statement and driver’s license to verify their identity, age, etc. If you work at it, it could work. Maybe have someone with you to interview anyone you deem OK… – S

Round Robin Calls. My aunt belonged to a program where people who were housebound would call each other every morning to check on how they were doing. She developed several good friendships through this program. I think she became involved by calling the city senior program. She would receive a call every morning, then she would call someone else.

…My aunt also had a friend who would go to the library for her. You may also qualify for in-home supportive services through your county, which would be through your local social service agency. They would send out someone to come in to your home and visit, help with shopping, etc… Sometimes we have to reach out for others to get to know us. – G


What Helped Me With Sleeplessness

I started taking melatonin a couple of months ago, 1 tablet about 1/2 hour before bed, and sleep great now. I never could sleep before without taking some drug to help me. Melatonin gives me a good night’s sleep with no leftover “drugged” feeling in the morning. – L


Dirt is My Vitamin

Today I spent a few hours outside in the sun pottering in my garden doing mostly light weeding. I am close to the soil, I feel the green grass and I smell the soil. This is one activity, perhaps the only physical one, which restores energy rather than removes it, within limits of course. I have said this for years and people say, “Oh yes, it’s something you enjoy,” etc.

But the other day while reading a reputable journal of microbiology I saw where they have found a bacterium vaccae which inhabits the soil and it stimulates the immune system and increases serotonin in the brain! [See for example “Is Dirt the New Prozac?” or “Exposure to Dirt May Help to Fight Low Immunity and Combat Mood Disorders.”] Would be interested to hear if this works for anyone else. Is it possible to inhale the fungi vitamin B-12 which inhabits the soil I am wondering. – S


Parkinson’s Tremors… or Lyme?

Borrelia burgdorferi infection can cause Parkinson’s symptoms. Borrelia is the bacterial spirochete that causes Lyme disease. It’s very common but usually misdiagnosed. Here are a couple of websites if you are interested. – N [scroll down]


Swine Flu – May Include Diarrhea & Vomiting, Which Are Not Typical Flu Symptoms

My written instructions for alert to swine flu say one must have a fever, usually higher than 101F. Other symptoms: chills, sore throat, headache, body and muscle aches, dry cough, runny nose, tiredness and weakness and diarrhea and vomiting.

If you really think you have it, call ahead to the doctor. They may want to take precautions with you, like asking you to wear a mask and make sure you’re washing your hands often. They don’t want swine flu in the clinics near me… If symptoms get worse call the hospital ER near you and ask for advice.

Remember, swine flu really affects the lungs, so if you’re having problems there, you need to mention it first to the doctors. Antivirals at the very start have been effective in many… If you haven’t yet, start Vitamin D, 5000 IUs daily. It may help. – S


Note: This information has not been evaluated 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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