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From Our Readers – Comments & Suggestions 02-10-10

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Article on Reeves Transfer from CFS Research Program

Here’s an Atlanta news article about Dr. Reeves’ transfer (“CDC Reassigns Controversial Head of Chronic Fatigue Research”).  The CDC spokesman the reporters talked to wouldn’t say anything about the reasons for the move. But he said they’re “looking for a permanent director as soon as possible.” I hate when an article calls it just ‘chronic fatigue.’ – P


Dr. Bell’s XMRV Video – Clarifies Proper Scientific Method

Re: Video of Dr. Bell’s XMRV Presentation Jan 15 – Absolutely Fascinating

While watching the Dr. Bell presentation (http://vimeo.com/9051294), it became very apparent that not only does he present the information on XMRV in a straightforward clear manner, but the talk shows the importance of the scientific method.

I would suggest that everyone watch this video not only for the valuable information about the XMRV but also how studies/theories are developed and why the scientific method is considered the “gold standard” when it comes to research. I am posting this for informational purposes and not to debate the efficacy of the scientific method. – G


Patients Shouldn’t Have to Wait for Compassion Until a Cure is Discovered

A friend sent me this link (http://livingwithcfs.wordpress.com/) and I really liked what the lady had to say, especially this quote: “Patients can not, and should not have to WAIT to receive compassion and treatment from their doctors, until scientific research has found a way to cure them. Just as I have come to accept my condition, doctors must come to accept this condition and treat the patients and their symptoms accordingly.”  – S


What Helped My Energy Levels

Re: The article “Coenzyme Q10 – The Energy Maker”

I started using CoQ10 about 4 years ago after 25 radiation treatments to a large brain tumor. I have had chronic fatigue & Restless Legs Syndrome most of my adult life. I was diagnosed with Hashimoto’s thyroiditis and am on synthroid, along with osteoarthritis. The treatments brought on mood disorder. I searched information and found CoQ10 among other natural nutrients. I began taking it at 200mg 2x a day. In about a month my facial skin changed, taking 5 years off my looks among other benefits. I seldom have fatigue and my energy levels are great most of the time. I would not want to be without Q10. I am 66 years old. – Z


Temperature Controlled Mattress Pad for Arthritis

I liked my heated water bed in the “olden days,” and on the Arthritis Message Board I read about a mattress pad that uses controlled water temperature http://www.chilitechnology.com/index.php to warm or cool your bed. Stands to reason that it might help somebody like me with a problem staying warm (or cool) enough to sleep better. – T


“Long-Term Neti Pot Use May Backfire”

This research report reposted on the Sinusitis Message Board (http://www.prohealth.com/sinusitis/blog/boardDetail.cfm?id=555) says  “Although use of a neti pot for nasal saline irrigation may temporarily improve sinus infection symptoms… its daily long-term use may result in an increased frequency of acute [sinusitis] by potentially depleting the nose of its immune blanket of mucus.” – K


Try this Gluten Free Recipe Site

Great recipes [e.g., gluten free mac & cheese, pizza, dinner rolls]. My niece was deathly sick until she started to eat right (http://bocagringa.blogspot.com) – R

With Celiac Disease, It’s Crucial to Be a Detective

Q: Your catalog states that Ultimate Greens  is gluten free – but it has wheat & barley grass & barley malt, none of which are gluten free, and you can’t explain this away. So why can I believe your statement for other things that you say are gluten free? – J

A: You ask a good question about Ultimate Greens. We wondered about the barley malt too, and so asked our customer service & purchasing people about it. Their response was: “The Wheat Grass and Barley Grass that we use does not contain gluten, since no seeds are used; only the grass. The Barley Malt doesn’t contain Gluten either, because the leaf is used as opposed to the grain. This information comes directly from the manufacturer of the raw material that we use for our product.” For the sake of everyone who needs to avoid gluten, we will be sure to add this info in future catalogs.


Nurse or Other Phone Support for ME/CFS or FM?

Q: I have heard of some programs that offer phone support for people with CFS/FM. There is a phone number that you can call to talk to a nurse who specializes in CFS/FM. I think this would be very helpful. Does anyone know of any phone support programs? Maybe we can contact the Whittemore Peterson Institute and ask them to please offer phone support for people with CFS/FM.

A: It would be a great service. One such program in the UK – The ME Association’s ME Connect  – is manned by volunteers. It actually offers both e-mail support (meconnect@meassociation.org.uk) and phone support.

As they note, they do not offer a counseling service, and their volunteers will not take over the management of your problems, but they will share information that may “help you to work out how you can best approach your problems and so put you in control of your situation.”


Hospice Admission Guidelines for Dementia/Alzheimer’s

The National Hospice Organization developed admission guidelines for non-cancer diseases. Essentially, for dementia, the patient must be at stage 7c. What the guidelines mean is… (see “FAQ21” on the ProHealth Alzheimer’s Message Board ) – N


Can Parkinson’s Go into Remission?

Q: My husband was diagnosed almost 3 years ago with Parkinson’s. Started with a tremor in his right hand. He went from Mirapex to Sinemet. To be brief, this past summer he started cutting back on the Sinemet. Didn’t like the side effects. It has been 3 months without medication and he has no tremors, no jerking, nothing! His doctor says he still has Parkinson’s, but was amazed at how good he is doing. He is riding a bike, playing golf, and fishing as much as possible. The doctor said to continue the exercise. Has anyone else heard of this? – J

A: Anyone? We don’t know, but reading your post, we did remember that in 2008 a Cleveland Clinic researcher found riding on a tandem bike helped him a lot. So we Googled & found that the idea is now “One of the Top 10 Medical Innovations for 2010 at Cleveland Clinic.” 


More on “Shingles-Like” Episodes

Re: Letter “Repeated Shingles Attacks – or What?”

I read with interest the concern raised by a writer who said she gets pimples and other viral symptoms with her fibro flare-ups that resemble repeated attacks of shingles. I have long thought – and debated with my many doctors – that fibromyalgia and perhaps other disorders may be based in viral attacks. I get flare-ups that include sores in my mouth and sometimes bumps, rashlike, on my face. My flare-ups include feeling like I have a virus – rundown, feverish, achy, etc.

Today’s doctors lack creativity and curiosity, which is one of the major problems in learning more about disorders like fibro and eventually finding treatments and even cures. Know your own body and symptoms and don’t let cynical doctors try to invalidate what you are experiencing. Fortunately, we now have message boards to share our experiences. – J

Bravo! to the person who thought of connecting the pimples on the head to shingles or something similar. I have had these pimples for many years as well, and they are painful and take a long time to go away. They do not respond at all to typical acne medications either. However, I have always connected my symptoms to plantar warts, so I assumed the human papilloma virus (HPV), or plantar wart virus, was in my system and wreaking havoc. I had a really bad plantar wart on my foot for years and had to have it surgically removed, but it was already in my blood stream. The pimples could also be shingles, but I don’t have bad fibro symptoms (yet?), so it’s hard to tell if my symptoms get worse with the outbreaks. Most of the plantar wart symptoms occur on my hands, around the sides of my fingers. My body is fighting them, I can tell, and the warts are deep and painful when starting. However, they don’t usually turn into warts but instead break to the surface as a bubble that looks like a small circle, then goes away. Also, I thought shingles effects were mostly on the back and followed a nerve line. I agree that there must be a different virus involved with the head pimples thing. – S


Gently Used Shoes for Haiti

This charitable organization – www.Soles4Souls.org  distributes free footwear to people in desperate need all over the world. The international Foot Solutions shoe store chain works on behalf of Soles4Souls to collect ‘gently used’ shoes at its 240 outlets – and is now collecting shoes for men women and children in Haiti. You can search by zip code or country  to see if there is a store near you. They’re shipping all collected shoes to Alabama, and from there to Haiti – G  
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 condition, illness, 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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