From Our Readers – Comments & Suggestions 03-09-11

UK-Based B-12 Deficiency Support Group Educates & Activates

The issue of vitamin B-12 deficiency gained added visibility in the UK after the removal (now reversed) of Dr. Sarah Myhill’s right to prescribe and practice owing to such factors as "the potential harm to patients" of her suggestion that supplemental vitamin B-12 may help some ME/CFS patients.

The UK-based B-12 Deficiency Patient Support Group ( is run by “a group of the expert patients who suffer from vitamin B-12 deficiency ourselves.” The site includes a great deal of information about B-12 deficiency and the need for a better understanding of the deficiency & associated illnesses among medical doctors in the UK, including for example:

A video by Dr. Joseph Chandy, MD (a leading advocate for B-12 deficiency diagnosis) on the symptoms of this common health problem.

A recommendation that UK residents urge their members of parliament to support an ‘early day motion’ urging investment in B-12 research.  See the motion at


National Association of Injured & Disabled Workers Offers Assistance

NAIDW is a nationally recognized 501 (c) (3) public charity whose purpose is to provide short-term financial assistance to injured & disabled workers and their families as a result of injury, illness, pain, or disability. Such assistance is given through the Grants Program and is provided on a one time basis, per calendar year. All grants are paid directly to provider or debtors. Please do not call requesting Aid! You must first become a member and fill out grant application. All membership is free (


[Note: This site offers many resources for the disabled. Assistance programs include grants for continued education of children of injured & disabled workers, assistance for housing needs, medical expenses, and more.]


Links to Resources For Those With MCS/Environmental Illness

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


Research Says, "Go Easy on Yourself"

Here’s a New York Times article on the importance of not "beating yourself up" that I saw mentioned a while back on the Hunter Hopkins Center facebook site. [“Go Easy on Yourself, a New Wave of Research Urges” by Tara Parker-Pope, published March 3.] – H


PACE or Not? Which ME/CFS Treatment Trials Would You Believe?

Re: "Health-related quality of life in patients with chronic fatigue syndrome. Group cognitive behavioral therapy and graded exercise versus usual treatment: A randomized controlled trial with 1 year of follow-up"

[Note: this Jan 15 report on a Spanish ME/CFS treatment comparison trial found that CBT and GET in fact produced declines in physical function and pain at one year vs. usual treatment and did not improve health-relate quality of life.]

One of the variables that may have changed the outcomes in this study may well be the definition used. The PACE trial used the Oxford criteria which do not include post-exertional malaise. Extrapolating results from people without post-exertional malaise to patients with post-exertional malaise may be contraindicated. As well, an issue that scientists have been looking at is that studies published in non-English speaking countries do not get the same amount of exposure as studies in English. – K

The CDC needs to read this report and STOP giving limited research money to studies that keep looking at these useless modalities. We CFS/ME/FM sufferers know that this stuff doesn't work. Let's spend the research money on actual research that's looking for the cause and the cure! – S


Queens University Invites You to Join Fun "Brain Jog" Study

If you like Sodoku or puzzle games, you may love the enjoyable "Brain Jog" ‘minigames’ specifically designed to test and improve four cognitive areas – spatial ability,, memory, math ability, and verbal fluency.

Researchers at Queens University Belfast invite you to take part in a study of their “Brain Jog” electronic brain stimulating exercise application (downloadable free to your  iPhone, iPod or iPad). They will refine and update the game apps in real time as they receive participants’ feedback. To learn more about how to download the app free from iTunes store, go to


PANDORA to Organize May 12 Lobby Day in DC

“…PANDORA [Patient Alliance for Neuroendocrine Disorders Organization for Research and Advocacy] has hired Michelle Lonchar as an advocacy coordinator for NeuroEndocrineImmune patients participating in May 12 ME/CFS & FM Awareness Day and Lobby Day. These include patients with myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS), fibromyalgia, Gulf War illness, multiple chemical sensitivity and chronic Lyme disease.

One feature of this year’s activities will be the “Speak about ME” grassroots effort to show legislators that NeuroEndocrineImmune diseases also afflict children. PANDORA will give assistance to these advocates through its Advocates Extraordinaire™ program.

Lonchar served as a mobilization and Action Network coordinator for the American Pain Foundation from 2006-2008, where she recruited and trained advocates to promote favorable pain policy, legislation and practice. She was instrumental in securing over 100 organization endorsements and advocate testimonies submitted to Congress in support of the National Pain Care Policy Act. This led to success as National Pain Care Policy Act provisions are included in the 2010 Affordable Care Act…."

PANDORA (excerpt from Feb 28 news release)

[Note: We could not find an information & signup link for the event yet on the PANDORA site, but those interested in being Lobby Day participants can get more information by contacting PANDORA’s dedicated Communications Director, Tina Tidmore, at]


A Good Overview of Lupus

HealthCentral’s Lead Patient Expert specializing in ME/CFS and FM , Karen Lee Richards, has written up a great 3-page summary of the inflammatory chronic autoimmune disease Lupus – which has a very wide range of possible symptoms and can be hard to diagnose. [See "Lupus, a Comprehensive Overview"] – J 


Check for Potentially Risky Rx & Supplement Interactions

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


Finally – Pelvic/Bladder Pain/Interstitial Cystitis Description & Guidelines

We’ve Got Guidelines! This morning, [March 1, 2011] the American Urological Association (AUA) released the first-ever clinical guidance on interstitial cystitis.

The AUA Clinical Guidelines: Interstitial Cystitis/Bladder Pain Syndrome include:

• A paper [“Diagnosis and Treatment of Interstitial Cystitis/bladder Pain syndrome” by Hanno PM, et al.] describing consensus from an expert panel on the recommended diagnosis and treatment approaches for IC.

• An algorithm providing a snapshot of the clinical treatment approach. [See diagram.]

The ICA thanks the AUA and the guidelines panel, which included many members of the ICA Medical Advisory Board as well as ICA Executive Director Barbara Gordon. The ICA encourages patients to print copies of these documents and to give them to ALL of the members of their healthcare teams. The guidelines are available for downloading on the AUA website –

Interstitial Cystitis Association (ICA) newsletter (

[Note: 3% to 6% of American women over age 18 (3.7 to 7.9 million) have symptoms of IC,  according to an NIH-funded study covering 100,000 households done in 2009 by RAND Corp in Santa Monica, CA. Another study of an IC patient sample found that 38.7% also had IBS, 17.6% had fibromyalgia, and 9.4% had ME/CFS (vs 5.6%, 1.7% and 1.1% of controls ( Additionally 1 to 4 million men may have IC, and though no pediatric studies have been done to assess frequency in children, “many adults comment that their IC symptoms started in childhood," according to the ICA.]


View and Vote on the 2011 Neuro Film Fest Video Entries

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, Parkinson’s, stroke, and dementia to Huntington’s Disease, Epilepsy, Guillain-Barre, and many more.]

American Academy of Neurology


Dr. Bell to Explain Cutting Edge ME/CFS Science in Boston, Apr 16

Dr. David Bell will present "Current Status of XMRV Research and Comments on the NIH April State of Knowledge Conference" in Boston on April 16. (To read the entire announcement and register NOW to learn the latest click HERE.)

Massachusetts CFIDS/ME & FM Association (lecture co-host)


Lyme Disease Symptoms in South Africa?

I …live in South Africa and I am 99% sure I have Lyme disease, I have been to numerous doctors, neurologist, gastroentologist, heart specialist, GP you name it. Only recently after doing some research on the Internet I realized that I may have Lyme disease. I have been sick for 2 months now, and about a week before it all happened I was at the Vaal River staying at friend's house that is right next to a deer farm. …. My symptoms keep changing but pretty much I have experienced all the symptoms listed on the site [ProHealth's Lyme Disease Message Board string on “What are some of the symptoms of Lyme?”]. The worst is the constant blurred vision that I have. – P


Diagram of ME/CFS & Lyme Spinal Fluid Differences

Posted online Feb 26 by Science News – a "Molecular Telltales" diagram showing the distinct protein signatures for two conditions – CFS (738 proteins in red area unique to CFS) and post-treatment Lyme disease (692 proteins in green area unique to Lyme). Click on the diagram to enlarge it. – A


List of Current Studies at Stanford Chronic Fatigue Initiative Website

Hi, I saw this posted on the Whittemore Peterson Facebook page – a link to the Stanford Chronic Fatigue Initiative (, which is a research team headed by Dr. Jose G. Montoya, MD, a pioneer in antiviral research for treatment of ME/CFS and other chronic diseases at Stanford’s Infectious Disease Clinic.

For information on their current studies of possibly infection-associated chronic diseases, including links to participating researchers, go to

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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