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Letters From Our Readers – Q&A Session 06-18-08

Role of Immune System in Chronic EBV?

Q: I’ve had CFIDS for 13 years. I’m 29 now. What started as a prolonged EBV [Epstein Barr Virus/mononucleosis] infection continues with frequent flares during cold/flu, winter, physical exertion, chemical exposure, mental health exacerbations, etc… At this point I’m considering probable surgery for a lymph node that has been ‘sacrificial’ for the overflows of EBV. My adenoids are staying large, which is a sign of where all my flares went over the years. The ENT said removal is likely, based on a past MRI and what he could see by physical exam, but pending another CT scan. My concern is, after the taking out the adenoids, where are the EBV flares going to go? To another lymph node?

That is why I’d like to find out the role of the immune system in the chronic EBV cases, because I’d like to know if my body will need: a) an immune boost, b) a suppressant, or c) both, and what is standard protocol (medicine, therapies, treatments) for each.

I’m going to discuss treatment options after surgery with my primary doctor and would like to give him more info of past successes treating chronic EBV. – Nik

A: Adenoids are a clump of lymphatic tissue that sits in the back of the nasal passageway. They are a part of the immune system that traps bacteria and produces antibodies to foreign molecules. Due to the location of the adenoids, they normally provide defense against inhaled substances. Under normal circumstances, the adenoid function decreases with age and the tissue shrinks.

The adenoids are removed, called adenoidectomy, typically if they are enlarged with infection or causing a blockage. To date, there are no studies to our knowledge that show a decrease in immune function after removal of the adenoids. The adenoid inflammation during an acute infection may indicate that there is recurrent infection in the adenoids. Removal may decrease this inflammation during the acute infection. Otherwise, the rest of the immune and lymphatic system will take over the job of the adenoids in assisting the body in removing the infection.

There is no one right way to help support the immune system. There are many means of increasing overall immune function. Typical vitamins used to support immunity are vitamin A, C, E and minerals like zinc. Herbal products may also be used in increasing the immune system such as astragalus, Echinacea, ligustrum, cordyceps and reishi/shitake mushrooms. It would be advisable to consult a physician or other practitioner for specific protocols of increasing immunity after adenoid removal.


How Can I Explain ME/CFS and FM?

Q: Do you have any suggestions about how I can explain what living with Fibromyalgia and ME/CFS is like to “normal” friends, without sounding like a whiner – just so they will understand? – Chloe

A: You might sift through the suggestions in a message string started by “Sharon” in ProHealth’s ME/CFS & FM Message Board – titled Ways to explain FM & CFS [1]. You’ll find a real variety of messages and suggestions, and hopefully one that may work for you.


Ideas for Working at Home?

Q: I am at the point that, no matter how tired I am, or how bad the brain fog is, I have to find a job. I have been trying something that I can do at home, but nothing seems legit. I do sell from time to time on e-Bay, but I am just not making enough… I hope someone who is still working can lead me in the right direction. Thanks in advance for any advice – HD

A: As one ME/CFS & FM Message Board user rightly advised, “there have been past posts on ideas for working at home on the ME/CFS & FM Message Board [2], and some of them look pretty good.” Use the search box in the upper left corner and search on “work at home.”

Just one example of the many suggestions you’ll pull up is to “check out http://www.guru.com [3]. It is a service that joins employers with at-home consultant/part-time workers. You bid on a job and then finish the work. Then bid on another job. Or can you be a math tutor? They sometimes make good money and you can do it from home.”


Hard Copy of Name Change Info Available?

Re: Founder’s Corner – “Fair Name Campaign Update – Exciting New Direction” [4]

Q: I’m encouraged to see that the name change committee is forging ahead with plans, since so many of us already refer to our disorder as ME or ME/CFS or CFS/ME. I would like to try to disseminate information to ME/CFS patients in our little corner of the world. Our distribution list covers more than the Charlotte (NC) area actually, and people are always forwarding to others that they know don’t receive the newsletters. So I can at least distribute information to those who may not read your newsletters.

There are still many, particularly the cognitively challenged, who don’t use computers at all. Do you have any plans for hard copy distribution of this type of information to anyone who would like it? We have a mailing list of people in our area who do not have computers, and perhaps other support groups do likewise. – Nancy

A: Yes, we have taken patients who don’t have access to a computer into consideration. When the Fair Name Campaign’s redesigned and revitalized Web site is unveiled in September, there will be downloadable information, including a brochure, available that can be printed and distributed as needed. Whether or not we will be able to have professionally printed brochures done and shipped in large quantities will depend on the funding available at that time. Thank you for being mindful of all ME/CFS patients, and for the good work you have done with them.


Secondary Raynaud’s and ME/CFS Related?

Q: I have had Raynaud’s for 6 years and was diagnosed with CFS 4 years ago. I have severe fatigue and have not been able to work since the diagnosis. Numerous tests have ruled out other disorders. [Raynaud’s disease is a condition that causes some areas of the body such as fingers, toes, nose, ears to feel numb in response to cold temps or stress.] I have recently seen a rheumatologist who examined my fingernail beds and said that I have capillary drop-out, which is consistent with secondary Raynaud’s, but no Rheumatologic disorder at this time. Are secondary Raynaud’s and CFS related? – SJ

A: As you know, secondary Raynaud’s is caused by some other underlying problem. According to the Mayo Clinic (http://www.mayoclinic.com/health/raynauds-disease/DS00433 [5]), these causes include:

Thus far, we have not been able to find a reputable source that directly links secondary Raynaud’s and ME/CFS. However, the jury is still out as to whether ME/CFS (or some subset) is an autoimmune disease. If it proves to be an autoimmune disease, then it would follow that ME/CFS could possibly be an underlying cause of secondary Raynaud’s. There’s just no way of knowing that for sure at this time.

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 in collaboration with your professional healthcare team.