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Letters From Our Readers – Q&A Session 05-21-08

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Is ME/CFS Genetic?

Q: This mitochondrial information [Dr. David Bell’s article “ME/CFS as a Mitochondrial Disease”] was not part of my theory. Oh well. As a kid I now figure I had ME/CFS, ADHD and depression, but who knew what to do with these strange symptoms? Sixty years ago no one would have believed these diseases.

My older brother came back from the service sweating and twitching and in a few years he couldn’t make a decent living. My next older brother, after having early business success, was ruined by his late thirties. All of us suffered great fatigue and depression, some of us drank too much and two of us could not settle down. Our Grandpa, who immigrated from Denmark, also suffered greatly from fatigue, and having learned ME-CFS is genetic, I based my theory on his passing it to us. Now I don’t know. I still have depression, ADHD, ME/CFS and now diabetes. It’s all being treated but without the help, I would have gone looney decades ago. Can anyone enlighten me? Is it genetic? – Wagar

A: It does appear that, in some cases at least, there may be a genetic predisposition to ME/CFS. However, that does not preclude the mitochondrial disease information in Dr. Bell’s article. He is simply explaining how the disease may affect the patient’s cells, and possible ways to test for ME/CFS in the future.

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Report on International Symposium?

Q: Regarding the “International Symposium on Viruses in CFS and Post-Viral Fatigue: June 22 & 23 in Baltimore” listed in your Current Events. Will you be able to report on the outcome – especially the Montoya speech where he “hopes to announce the preliminary results of this trial (Valcyte) at the conference?” – Anon

A: ProHealth will not have a reporter present at the viruses in CFS symposium, which will feature 22 researchers’ latest findings. But we will do our best to find news on the presentations and any associated journal articles, and share them with you. Hopefully the symposium sponsors (HHV-6 Foundation, IACFS/ME, CFIDS Association, and others) will facilitate this.

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Information on Sarcoidosis Chronic Fatigue?

Q: Have you any information/help/advice on Sarcoidosis Chronic Fatigue? In England ME/CFS and Sarcoid Chronic Fatigue are not considered the same, as ME/CFS is still looked upon as being psychological in origin in many cases. – Marilyn

A: Sarcoidosis and ME/CFS are different illnesses, neither of which is psychological in origin. Sarcoidosis is a disease that involves inflammation and produces tiny lumps of cells, called granulomas, in various organs in the body. The lumps are very small, resembling grains of sugar or sand, and they can be seen only with a microscope. However, the tiny granulomas can grow and clump together, making many large and small groups of lumps. If several granulomas form in an organ, they can affect the functioning of the organ. Sarcoidosis can occur in almost any part of the body, although it usually starts in either the lungs or lymph nodes, especially the lymph nodes in the chest cavity.

Although the symptoms of sarcoidosis will vary depending on which organs are affected, a significant symptom in many cases is fatigue. The term “post-sarcoidosis chronic fatigue syndrome” was used in a 1993 journal article to refer to fatigue that lasts even when other sarcoidosis disease markers have returned to normal, suggesting that in some cases ME/CFS might be a complication of Sarcoidosis.

You might be interested in reading this article on using the Marshall Protocol to treat Sarcoidosis: “Dr. Trevor Marshall on Treating Sarcoidosis.”

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Help for Brain Fog?

Q: After 25 years with this disease I know that if I don’t take care of myself and monitor myself on a daily basis that I just won’t be able to function at all for a period of time. One of the hardest things to deal with is my brain fog. There is an old saying that goes something like “Of all the things I’ve lost, I miss my mind the most.” That’s the way it is with me.

I can’t seem to organize my mind at all and sometimes it just scares me to death. I ask myself how I will be able to take care of myself as I grow older when I also have more age-related problems in addition to what I now deal with on an ongoing basis. Is there anything I can take to help the brain fog? Dealing with the debilitating fatigue, headaches, IBS, painful shoulders and back and the horrible brain fog are just awful any way you put it. Please help me if you can offer any suggestions. – Judy

A: Many patients say that the cognitive functioning problem (brain fog) is the worst symptom of ME/CFS – even worse than the fatigue – so you’re not alone. For one thing, you can submit questions for consideration by Dr. Vincent Fortansce, a renowned neurologist and author of “The ANTI-Alzheimer’s Prescription,” who’ll be hosting a Live Q&A in the ImmuneSupport.com Chat Room this summer.

Also, there are 11 supplements under the “memory” product category in the ProHealth store that are suggested to support healthy functioning of the processes involved in memory, recall, concentration, and cognitive function. You can sort them by customer rating or by best sellers to see what others are finding helpful. Also, when you click on the “more info” button, you’ll see a “Reviews” tab. There you’ll find reviews from people who have used the product.

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Need Help to Find a Doctor?

Q: I have CFS and have at last found a wonderful doctor in my area who is helping. Is there a way I can share this info with others? – JS

A: There’s the Co-Cure Good Doctors List. And also, do search the “Please Post Your Good Doctor Here” message string in our ME/CFS & FM Message Board. There you’ll find almost 300 requests and recommendations from patients in towns large and small. Certainly others will be thankful for your suggestion, and even if you’re not the first to list a doctor, the added vote of confidence can be helpful.

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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 reviewing it in collaboration with your professional healthcare team.

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One thought on “Letters From Our Readers – Q&A Session 05-21-08”

  1. smeyers says:

    I have to tell you what happened to my brain fog, hoping that maybe it will be of some use to you.

    For years I have complained to my doctor that I wasn’t getting enough thyroid medicine and begged her to give me the t-3 and t-4 that the doctors on this page say is the best for penetrating the cell wall and getting the needed medication directly into the cells themselves. She was determined to go by the test specified by the AMA (I forgot the name)and refused to try anything new. She said I was getting sufficient thyroid dosages.

    Lately I’d been complaining of brain fog and that my work was suffering and I was worried that I was going to get into trouble.
    My doctor actually said “would you mind if I increased your thyroid dose? You’re actually at the low end of the normal level”. After I picked my jaw up off the floor I said sure, go for it and she increased my thyroid from 1.25 g. to 1.75 g. For the last two months I’ve had 0 brain fog experiences! I had another test done a week ago for an appointment next week. I don’t know what it shows but I swear if she tries to reduce my dosage, I’m finding another doctor. My head has never felt so clear!

    You might want to talk to your PCP and have him/her test your thyroid. Even a little bump goes a long way!

    Susan

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