From Our Readers – Comments & Suggestions 02-16-11

February 22 – NIH Videocast "CFS: Is there a virus?"

The National Institutes of Health (NIH) is airing a live webcast, "Chronic Fatigue Syndrome: Is there a virus?", as part of their Demystifying Medicine 2011 series. The presenters are Drs. Shy-Ching Lo (FDA), Harvy Alter (NIH), and Fred Gill (NIH).

Air date:  Tuesday, February 22, 2011, 4 to 6 PM EST

Note: This event is targeted toward professionals, however it may be of interest to others as well.

Description of the event (information from the NIH website): “The course includes presentation of patients, pathology, diagnosis and therapy in the context of major disease problems and current research.  Primarily directed toward PhD students, fellows, and staff, it is also of interest to medical students and clinicians. The course is designed to help bridge the gap between advances in biology and their application to major human diseases.”

For additional information about the course, visit Demystifying Medicine 2011. Live webcasts and recorded sessions (available a few days after the live event) can be found on the NIH Videocasting web site.

Massachusetts CFIDS/ME & FM Association (


Protest Regarding NIH's ME/CFS Funding Panel Succeeds

On Feb 3, CFS Central blogger Mindy Kitei initiated the "Mission Possible" email campaign to protest inclusion of British researcher Dr. Myra McClure on the NIH's Special Emphasis Panel, which is responsible for selection of NIH grants for ME/CFS research projects to receive NIH grants. Among other objections to Dr. McClure was her public statement that "Nothing on God's Earth could persuade me to do more research on CFS."  Very quickly, Dr. McClure was answering emailed suggestions that she withdraw from the panel saying "I already have."  – ProHealth


NIH's 2011 Fibromyalgia & ME/CFS Budget Truly a Pittance

This chart provided by ME/CFS Worldwide Patient Alliance researchers compares prevalence of the illness with amount of money spent on research. The imbalances are dramatic, with great underfunding for fibromyalgia and ME/CFS. Green bars are funding, red ones are number of people with the illness. – P


Dating Sites for Those With Disorders May Offer Companions

There are some alternatives to the mainstream dating sites for singles interested in meeting other singles and who aren’t as concerned with being ‘defined by their disorder’ as finding someone who understands it. Here’s an article on the subject in the Edmonton Journal [“Disabilities front and center on niche dating website.”]  – S


Need Birth, Death, Marriage, Divorce Certificates?

You can get them all from this site ( – T


Opioids911-Safety Help Site

Opioids911-Safety ( is an independent, noncommercial, Internet-based educational activity from Pain Treatment Topics ( for patients and their caregivers, focusing on the proper and safe use of opioid pain relievers. Our mission is to provide an understanding of opioid analgesics and their various risks, and to suggest specific actions for preventing opioid-related problems, including: misuse, abuse, addiction, diversion, adverse reactions, overmedication, and life-threatening overdose. Instruction is provided on recognizing opioid problems if they do occur and on being prepared for what to do during an emergency. –

[Note: This site includes much information about opioids for consumers, including signs of an emergency and emergency rescue steps; as well as information and an Opioid Safety Toolkit that healthcare providers can use to educate and prepare pain patients and their caregivers.] 


WPI Clinical Services Director Describes Ramp-Up to Clinic Opening

Re: "Dr. Deckoff-Jones Previews WPI's Soon to Open Clinic Side" 

Thanks to Jamie for sharing all the work that's going into getting this long-dreamed-of clinical refuge up & running (by May??). Where no one will insult us and accuse us of not wanting to work. – L


FDA Approves Generic Fentanyl Patch

Covidien, an Irish company, has received FDA approval for its Fentanyl Transdermal System (FTS) pain patch – a generic alternative to the branded Johnson & Johnson Duragesic® patch. According to their news release, “FTS, a Class II controlled substance, is an opioid analgesic indicated in opioid-tolerant patients for management of persistent, moderate to severe chronic pain that requires continuous, around-the-clock opioid administration for an extended period of time, and cannot be managed by other means such as non-steroidal analgesics, opioid combination products, or immediate-release opioids.” The FTS patch will be marketed in three different strengths (“in the current quarter”). – N


Benefits of Selected Supplements for FM Discussed

Re: "5 Supplements for Fibromyalgia Pain"

As you may know, Karen Lee Richards is HealthCentral's lead patient expert on chronic pain specializing in ME/CFS and FM – and a leading supplement researcher/writer. She personally tries the supplements she writes about, and has done in-depth research on the science behind each of these supplements. (The supplements: magnesium & malic acid; vitamin D; SAM-e (S-adenosyl methionine); 5-HTP (5-hydroxytryptophan); ginger; quercetin & bromelain.) While you're at her blogsite, you might also want to read her article on "7 Conditions Often Mistaken for Fibromyalgia."  – ProHealth


Coconut Oil and Yeast/Fungal Infections

Re: “Coconut Oil – Healthy Gifts from the 'Tree of Life'”

It is interesting to see the conventional wisdom that all saturated fats are bad for you turned on its head! Coconut oil is very effective against yeast infections due to the caprylic acid and lauric acid it contains. You can take it internally (around 2 tablespoons a day) or apply topically. I had tried caprylic acid alone with minimal results, but when I started taking virgin coconut oil, I started herxing almost immediately. It's also supposed to be antiviral (dissolves the lipid coating of certain viruses).

I've started cooking more with coconut milk (which has a fair amount of fat), adding it to lentil soup and making green thai chicken curry, with green curry paste and coconut milk, which is delicious. Coconut milk is high in calories, albeit of the good kind, and I load up the curry with lots of veggies to even it out. – M


Facebook for ME/CFS Kids & Teens, Setting Up Support Groups and More

The ME/CFS Australia (SA) site ( is an outstanding source of international news for those with ME/CFS, FM and MCS. Last week, they announced that: “ME/CFS Australia (Victoria) has created YOUth and ME(CFS), a Facebook page for young people with ME/CFS to share their experiences.” – D


Homeopathy Debate Highjinks

Whether or not you believe homeopathic medicines are helpful, the folks who've been running "The Homeopathy Overdose Trials" have been having fun with it. As you may know, homeopathic medicines include such a minute amount of a substance diluted in water that there may be few or even no molecules of it left in the solution. Here's a video of some skeptics on board a ship in the antarctic trying to 'overdose' on a homeopathic sleeping potion. – B


2011 Headache & Migraine Poetry Contest

It's Migraine poetry time again! The 2011 Putting Our Heads Together Migraine Poetry Contest is now open and accepting entries. Every year, I put together this poetry contest as an outlet for us. It's a great way to share our feelings about our Migraines, describe our Migraines, and another way to reach out to people who don't understand Migraine disease. [Entry deadline Mar 15. [To read more, click here.]

Teri Robert,

Note: This information has not been evaluated by the FDA. It is generic and anecdotal and is not intended 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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