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From Our Readers – Comments & Suggestions 01-14-09

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Those Old Meds – Best to Flush?

Q: Like many of us with CFIDS, fibro, etc., I’ve collected a medicine cabinet full of old meds and wonder how to dispose of them. Any advice? – Greenie

A: An interesting question, with a complicated answer depending on where you live. Chemo drugs (considered hazardous) should be returned to the dispensing clinic. But many other meds are biologically active and if flushed or put down the drain do contaminate groundwater, streams, and drinking water, doing harm to living things. At least 20 tons of active prescription drugs have been going into U.S. sewage systems every year (not to mention all those non-prescription products). And twice as much has been going into landfills via household trash, which may also contaminate ground water.

Federal guidelines now dictate that prescription and non prescription drugs should not be put down the drain or toilet. This leaves a choice of (ideally) using local drug-takeback programs or hazardous waste disposal sites, or as a last resort disposing of products via household trash. (First, remove the products from their containers and scratch off any personal information, then mix with kitty litter or other unappetizing garbage in a plastic bag or some other closed unmarked container.)

Many pharmacies & clinics do offer to accept expired or unused drug products if you ask, and more and more communities accept “pharmaceutical waste” via hazardous waste disposal sites. (In California, for example, pharmaceutical waste is defined as “items intended for use in the diagnosis, cure, mitigation, treatment, or prevention of disease in humans or other animals… unused or expired medication, or unused or expired drugs, prescription and over-the-counter human drugs, veterinary drugs, diagnostic agents, and nutritional supplements.”)

Our quick Google search turned up a couple of websites that may help you identify local disposal services:

Earth911.com (http://earth911.com/hazardous/medications/). Enter your zip code, city or state to “find a recycling location” in your area.

The Teleosis Institute site ( http://www.teleosis.org/gpp-locations.php)

And perhaps some readers will have other info to offer.


Want More Research Funding? Become An Activist

RE: The Live Chat with ME/CFS Research Expert Suzanne Vernon, PhD

Dr. Vernon made the very good point that ME/CFS patients need to let the government. etc. know that we want funding for research, and that CFIDS.org has templates set up so that you can easily e-mail letters to officials, media, etc. You can also sign up to be notified via e-mail when a letter needs to be sent. Just click on the “advocacy alerts” link to get to the info page.

Yes, it’s not fair that sick people are expected to advocate for themselves, and it’s also frustrating that after 25+ years we are still begging for funding and that the CDC’s case definition does not even describe the disease that many of us have. However, it seems that the squeaky wheel gets the oil. And there are a lot of us: If every ME/CFS patient went to CFIDS.org and sent just one letter, that would potentially be between 1 and 4 million letters!

It is also empowering to fight for change. It’s very easy to feel frustrated, or even defeated at times by ME/CFS, and those are very good times to send a letter to your Congressperson etc., tell them how this disease is affecting your life, and ask for more funding. They need to understand that this disease is devastating and that their constituents are suffering and need their help. We can all play a part in furthering our cause by becoming activists for ME/CFS. – outofstep


Mental Chew Toy

Thank you, Dr. Vernon [for the Live Chat Q&A on new research]… I gained a lot from your comments and especially appreciate the transcript. CFS/ME is a mental chew toy for life. Your work and sharing brings me closer to solving my personal mysteries with this disease. – Groupie


Uplifting News!

RE: “CFIDS Association Funds Largest-Ever Research Initiative” and “Meet Anthony Komaroff, MD – ME/CFS Ambassador”

I was so very pleased to hear the news of the grants being substantial recently regarding research for ME/CFS. I have suffered with it for four plus years and was recently denied Social Security benefits by a really tough judge out of Minneapolis who managed to word his denial in such a fashion that made sense to somebody out there. Certainly not to me.

I am now faced with a bleak future financially as I have been told that an appeal can take several months, even years to obtain. The sooner the ability to specifically pinpoint CFS with medical testing, the possibility of receiving financial assistance will increase substantially. A special thank you to all that are striving to make a breakthrough in this mysterious area of health. – B.Brown


Tips on Hidden Gluten

If you are going to try the gluten-free diet, you need to watch for hidden sources of gluten. You won’t get a good result if you are still eating gluten. One key place that you would never think of finding gluten is in soy sauce. It is the second ingredient listed, higher than soy!

Most sauces have some form of gluten in them: salad dressing, barbecue sauce, mayonnaise, etc. You need to read the labels very carefully. Or else just go without sauces for a while. Stick with salt and pepper, or try Mrs. Dash to flavor your food. Within 1 week you will notice a difference. I did. Good luck!


Locating a Rheumatologist

Q: I’ll be moving soon. How can I locate a rheumatologist in the new area? I have CFS and arthritis. – Harold M.

A: A good place to start is the international database maintained by the American College of Rheumatology Doctors’ names, specialties, and contact information/locations are provided for towns from Alabama to Wisconsin, Argentina to Wales.

But the Rheumatology.org site offers much more for your information, including:

Fact sheets on rheumatic diseases/conditions, caregiver briefing papers, and common medications.

• Info on topics such as neck/shoulder pain and whiplash.

• Plus an explanation of “what is a rheumatologist” (English & Spanish) and the roles/activities/training of different types of health professionals involved in rheumatic patient management – occupational and physical therapists, APNs, RNs, social workers, psychologists, etc.


This Could Be Huge for People with ME/CFS and FM

“UC San Francisco to Launch Center for Viral Diagnosis & Discovery in Early 2009”

When I was hospitalized for encephalitis the doctors tested for everything under the sun, except for what I had – EBV & HHV-6. It seems like physicians should know from their training what viruses cause encephalitis, but evidently enough don’t so this will be useful.

But even more relevant is the Viro-Chip [this center will be using] which should be able to tell us exactly what viruses are involved in ME/CFS or FM, and whether they are new or not.

What is exasperating is that the Viro-Chip is being used for diseases like SARS when there are 1-4 million people in this country suffering from CFS and 10-15% of patients have chronic viral infections.

Get CFS and FM patients in there and start testing them! Let’s find out what we’re dealing with so that we can finally get treatment!


MDs Learning About ME/CFS

Quite quietly and under most patients’ radar the CFIDS Association of America has been rewriting the rules on how to educate physicians about this disease. Not happy with the CDC’s old course, they released a new physician education course on Medscape about three months ago [Chronic Fatigue Syndrome: From Diagnosis to Management], and the results just came in; the course has been surprisingly successful.

Thus far more than 13,000 health professionals have taken it. Since a study shows that each of them treats about 3 CFS patients a week, this means the course is positively impacting about 36,000 patients a week!

One of the goals of the course was to teach doctors how to differentiate CFS from depression. This means fewer people with CFS are being shunted by ignorant doctors into the depressed category. (Hasn’t virtually everyone experienced that one!) Hopefully they’re also catching these patients before they’re exhausting all their reserves – as so many of us did – and bottoming out in a horrendous crash.

This is the first widely disseminated educational course actually created by CFS physicians (Dr. Charles Lapp and Dr. Lucinda Bateman) for CFS patients… Almost ten times as many physicians have taken the CAA’s new course in the first four months of its existence as have taken the CDC’s course in its first four years. The people at Medscape are reportedly very happy and sound rather surprised at the success of the course thus far.

The success of the course thus far suggests that physicians are eager to learn about CFS if it is presented to them properly. The course also, of course, presents an opportunity for people who already know they have this disorder to get their physicians some good information. More people knowing they have this disease means more clout for us as well. – Cort Johnson, ME/CFS/FM research reporter and founder of the
Phoenix Rising website and newsletter.


Recommended Lyme Reading

The best info about Lyme comes from Dr’s who are experts in the field of Lyme treatment. Dr. Joseph Burrascano is a leading Lyme expert. Please read his paper titled
“Advanced Topics in Lyme Disease – Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses,” October 2008. (There are earlier versions online, but this one has the most up-to-date info.)

There is a ton of info in Dr Burrascano’s paper…anyone with Lyme or another tick borne illness must read it…. – Nanie46


Less Pain and Stiffness Taking MSM

I’m having less pain & stiffness lately, and I know it’s since I’m taking MSM [methylsulfonylmethane] in powder form…. I’ve been doing LOTS of reading about this “miracle,” and now feeling some of its effects. I’ve taken it over the years but only in caps and only small amounts, like up to 5K per day. [I believe] the key is working up to mega doses.

I deal with OA, Myofascial Pain and some FM, I guess, and have tried everything it seems over the years. No drugs for this stuff, as I’ve had side effects that I don’t want to think about getting ever again. I live in Southern California, and always feel worse when the weather gets colder. We’ve had rain and now about 50 today, but no humidity, but can be bone chilling colder. Blood thins living in warmer climates.

There is a book –
The Miracle of MSM: The Natural Solution for Pain – and I’m going to call my library to see if they have it. You can buy it “cheap lightly used” from Barnes & Noble online… – jaminhealth

Note: The book’s author,
Stanley W. Jacob, MD, (director of the DMSO Clinic and professor of surgery at Oregon Health Sciences University in Portland) reportedly first discovered the effects and benefits of MSM in 1963. MSM (methylsulfonylmethane) is defined as a naturally-occurring nutrient and a bioactive form of sulfur that provides antioxidant activity and supports a healthy inflammation response. Sulfur is a component of bones, teeth, and collagen (the protein in connective tissue. MSM is the third most abundant nutrient in the body, is found in highest concentration during infancy, and diminishes as we age. It is also present in whole fresh fruits, vegetables, grains and milk.


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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