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From Our Readers – Comments & Suggestions 03-02-11

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Watch the XMRV & Blood Supply Webinar Tuesday, Mar 29

The New York Academy of Sciences is hosting an event with free live webinar transmission on Tuesday, March 29 from 1 to 5 pm Eastern Time – "Pathogens in the Blood Supply," presented by the Emerging Infectious Diseases & Microbiology Discussion Group. Among the speakers:

Dr. Judy Mikovits, PhD, a virologist and XRMV researcher at the Whittemore Peterson Institute for Neuro-Immune Disease.

Debra Kessler, RN, who is responsible for notifying and counseling donors regarding infectious disease testing and advising transfusion services regarding transfusion transmission of infectious diseases. New York Blood Center.

Dr. Ian Lipkin, Columbia University’s ‘World Class Virus Hunter’ & director of the NIH’s multi-center study of XMRV in CFS patients. (See the Wall Street Journal article on this subject by Amy Dockser-Marcus.)

To learn about the NYC-based event, review the list of speakers, and register to attend or join the webinar, click HERE.


Chemical Sensitivity Resources

The MCS America ( March 2011 e-newletter includes a 7-page directory of links to online resources that can be of interest to people with environmental illness, MCS and related disabilities – from state-specific online issue discussion groups to Housing for Persons with Disabilities. [See] – A


"Chronic Fatigue Syndrome: Is There a Virus?"

The February 22 NIH live educational webcast "Chronic Fatigue Syndrome: Is there a virus?" reportedly featured presentations for the benefit of NIH and HHS scientists & staffers by XMRV researchers Dr. Shy-Ching Lo (FDA) and Dr. Harvey Alter (NIH), and Dr. Fred Gill (NIH). Initially described as open to the public, the webcast was in fact closed to all but people within the NIH and HHS. A posted comment stated that an edited version "in harmony with patient privacy protections, etc. will be available to the public after the event," but so far no video is available for viewing at the NIH webast archive site (



View 2011 Neuro Film Festival Videos & Vote for Your Favorite

The video entries for the 2011 Neuro Film Festival are in and the public can now begin voting on its “Fan Favorite” video through March 8, 2011. Neuro Film Festival is a contest hosted by the American Academy of Neurology Foundation to help raise awareness through video about brain disorders and the need to support research into preventions, treatments and cures. To view and vote for your favorite video in the Neuro Film Festival contest, visit [Note: Topics range from cognitive dysfunction to Parkinson’s, Stroke, and Dementia to Huntington’s Disease, Epilepsy, Guillain-Barre, and many more.]

American Academy of Neurology


Helpful Sites for Travelers with Special Needs

[As highlighted by the ME/CFS Australia (SA) Site –] The Flying with Disability website ( emphasizes that people with many types of disability can travel well, if they know the right way to prepare and plan. Provides checklists for advance planning in collaboration with your doctor and a travel agent, and guidelines for many issues you might not think of: the types of medical certificates that will be useful, travel insurance, security clearance, boarding, medical assistance, flying with oxygen, a wheelchair, or a guide dog, knowing your rights, making a complaint, and much more.

There’s also a UK site called Holiday Access Direct that provides direct links to special needs services – flights, disabled-friendly accommodations, car rentals, mobility & other equipment rentals, special tours, and cruises. – L


International FM & ME/CFS Awareness Conference in Kansas, May 13-14

The Fibromyalgia Coalition International (FCI) will be hosting its 11th annual Fibromyalgia and ME/CFS Awareness Conference on May 13-14, 2011 at the Doubletree Hotel in Overland Park, Kansas.

Presentations from top fibromyalgia and ME/CFS experts will focus on the theme of the conference, “Suffer In Silence No More,” discussing the latest research and successful treatment protocols for these chronic pain illnesses.

The conference is geared toward patients who will have a chance to network and participate in open discussions with each presenter, and medical professionals who may earn credits toward their professional development requirements.

The conference date coincides with National Fibromyalgia Awareness Day, which is commemorated worldwide on May 12 of each year.

For more information about the “Suffer In Silence No More” conference, including speakers’ bios, agenda and registration, please visit Fibromyalgia Coalition International at, call 913-384-4673 or email:

Fibromyalgia Coalition International founder Yvonne Keeny
("Turning 'Cope to Hope' for Thousands of FM/ME/CFS Patients")


Dr. Judy on Detecting XMRV Infection, March 17 in Edmonton

Dr. Judy Mikovits will present on “Strategies for Detecting XMRV infection in Clinical Samples," Thursday Mar 17 as part of Canada’s Li Ka Shing Institute of Virology Seminar series (  at the University of Alberta in Edmonton, Canada. [Note: The Institute is a newly founded entity with an expanded facility now under construction that is well endowed by the Li Ka Shing (Canada) Foundation with funding from the Government of Alberta.] – R


Patient Activism to Influence CDC's ME/CFS Research Focus

Re: “Tell CDC to Change ME/CFS Research Campaign Wins Round One!" and the nine proposed changes. 

Faith, Hope and Encouragement! A special thanks to all who are lending a hand or leading these various groups who are actively involved in the many differing aspects of ME/CFS. I know that many of you, too, suffer with this illness. I also know that many would like to become more involved who cannot physically or mentally afford to do this. At the current time my ME/CFS and FM are in remission and this is the longest I have gone without relapsing. I have to tell you that feeling quite well is a Godsend to me. While I still suffer with discomfort, and sleep a good 12 hours nightly, this is the closest I have come to normalcy in 7 years. I would like to do all I can during this "UP" time to be involved in the many efforts to improve our quality of life. With Blessings to all – B


Check Rx and Supplement Interactions & Drug Effects on Memory

Here’s another site where you can get information on possible medication and nutritional supplement interactions []. You do have to give them your email and then use a password to get in. Dr. Leo Galland is the ‘celebrity doctor’ associated with this site and program. I found it through an article he wrote on “Memory Loss Can Be Caused By Over-the-Counter Drugs – Did you know that common over-the counter or prescriptions can cause memory loss and cognitive impairment?” He included a long, long list of both types of drugs (prescription and over-the-counter) to watch out for. – M


Chart Shows NIH's FM and ME/CFS Budgets are Intolerable

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


A Fan of Vitamin B-12

Re: "Could a Common B-12 Deficiency Be Causing Your Symptoms?"

On Memorial Day 2001 I survived meningitis. I was dumbed down for a while and found B vitamins gave me a feeling of wellbeing. Methyl B-12 (methylcobalamin) seemed to be most effective. I found a high dose Methyl B-12 primate study, and took one-half the max dose for 60 days with good results. – T


Action for ME Physical Rehab Survey Results Contradict PACE  

Action for ME ( recently surveyed people with ME/CFS who had most recently tried graded exercise therapy (GET), which was deemed "effective" by the PACE Trial report. AfME's preliminary analysis of patient responses (albeit from a self-selected patient sample) found that 60% reported it made their condition worse and 44% said it made them much worse or very much worse, compared with 22% who reported even a small degree of improvement on graded exercise. – Y

[Note: See the Action for ME news release and link to the article at]


Dr. Pellegrino's Article on Coping With Brain Fog

Re: "Brain Fog Basics – Managing the Cognitive Dysfunction of Fibromyalgia (and ME/CFS)" 

•  Thank you so much for this well explained article. I had just had a neuropsych evaluation made due to this very thing… L

•  Good explanation of what my husband experiences frequently although he doesn't have Fibromyalgia or ME/CFS. However, actual clutter increases his confusion and irritability. We have just moved to a new home and he "hit the wall" yesterday and is frustrated. Unfortunately, he is too hard on himself which only increases the irritability and sense of being overwhelmed. Both of us have found that Acetyl-L-Carnitine helps reduce brain fog and increases energy and focus immensely. Serrapeptase reduces inflammation and body aches greatly. Perhaps I can get him to try some of the supplements Dr. Pellegrino mentioned in this article. – N

•   I am very surprised you didn't mention NADH as an important supplement to clear brain fog. It is the MOST important supplement I use to clear up brain fog, I call it my "smart pill". I've been taking it for years and can't think without it. I just finished graduate school and could never have done it without large doses of NADH. By the way, I take large doses of CoEnzyme Q10 and have for many years (I've been ill for 22 years.) It does nothing for brain fog, but it's very effective for cardiac arrhythmias. – C


Great Article on "When Pain Goes Rogue" ran an article on February 24 – "Chronic Pain" by Alice Park. [Note it goes on for 4 pages.] It got a LOT of likes, I think, because it really gets into pain perpetuated by brain and spinal cord alterations. Well worth reading if you have chronic pain! – J


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