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Hot Topics & Readers’ Notes – 08-22-12

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Survey on Need for ME/CFS/FM/Lyme Center in Southeast

P.A.N.D.O.R.A. ( is running an important survey:

“A health care / hospital system in the southeastern United States has expressed interest in creating a center of excellence for NeureEndocrineImmune diseases. If you have fibromyalgia, ME/CFS (chronic fatigue syndrome) or chronic Lyme disease, please fill out this survey.” The information will be used to determine the need for and financial viability of such a center. Read more & take the survey here:


Valid Pain Scripts Not Being Filled in Florida, KY Docs Fearful

According to a post on
I want to thank the Drug Enforcement Administration for making it utterly impossible for any pharmacy or pain-management clinic to fill valid scripts anymore. Not a pharmacy in Broward County can supply those of us who legitimately require pain relief in order to function…. I have scripts, but no one can fill them…. See “Feds’ rules keep me in pain,” Aug 17, 2012.

And in Kentucky, according to a post on
“I’m not going to be threatened with jail time or criminal charges and lose my career,”says one doctor practicing in Central Kentucky. See “Pill pain: Some doctors see law targeting abuse as excessive and confusing,” Aug 19, 2012.


New Research: Statins Increase Risk of Polymyalgia Rheumatica 14-Fold

In an article titled “A New Greek Name for Statin Toxicity: Polymyalgia Rheumatica,” GreenMedInfo director Sayer Ji reports on new research indicating that “statins increase risk of Polymyalgia Rheumatica 14-fold.” This is an inflammatory disorder typically presenting as pain and stiffness in multiple muscles, especially shoulders, neck and/or hip.


On the Little-Recognized Opioid-Induced Androgen Deficiency

Re: Important opioid-induced deficiency linked to hot flashes, fatigue, weight gain, depression, more

Reader comment: Usually higher chances of occurrences in men. We should refrain from consuming painkillers. – D


Black Dog Depression Help Website

The site of the Australia-based Black Dog Institute, a pioneer in depression research and support, offers many resources for those with mood disorders. Two examples include a section on depression in someone who is medically ill, and the interactive online myCompass program, to support self-help (limited to Australians).


Obama Throws in On the Side of ME/CFS Community

In his syndicated “White House Chronicle” column, ME/CFS Alert co-host) Llewellyn King wrote an editorial explaining the importance of President Obama’s statement urging NIH and HHS to feel “a sense of urgency” regarding ME/CFS. See: “Obama Takes an Interest in Chronic Fatigue Syndrome.”  


High Praise for Phone-Accessible Therapist

Post seen on the Hunter Hopkins Center Facebook page :

If you are looking for a Psychologist who specializes in conducting therapy with persons with M.E., CFS, & FM or any challenging and life changing chronic illness, Hunter Hopkins Center highly recommends Dr. Katrina Berne. She is very experienced and understands the illnesses well. How refreshing! – M (INTRODUCING: Katrina Berne PhD. Dr. Berne is a licensed clinical psychologist with a specialty in ME/CFS, FM and other chronic illness. Dr. Berne has written numerous books on these conditions, and understands the many challenges they bring to patients’ daily lives. Dr. Berne provides therapy sessions via telephone. She is currently accepting new patients. Contact info: 206 432-9313. Email


Free New Full Video: “Faces of Lyme”

The Poughkeepsie Journal is doing a multi-media series on Lyme in New York State’s Hudson Valley. Reporters met with people who have been diagnosed with advanced cases of Lyme disease, and one part of the series is this full video (“Faces of Lyme” by Chrissie Williams). It features interviews with four diagnosed patients, who explain their symptoms, their experiences seeking a diagnosis, and their hopes for treatment. (Thanks for this news to a post on the XMRV Global Action Facebook page!)


UK Petition: Govt ME Advisors Should be ME Experts, Not Shrinks!

An e-petition to HM Government’s Department of Health already has hundreds of signatures behind it. Titled “Advisors to the government on ME (commonly referred to as CFS) should be ME experts, not psychiatrists,” the petition states: “We, the undersigned, believe that the current level of psychiatric involvement in policy for a physical disease is unethical.”

To read the petition and sign (UK residents/citizens only), go to


Video: Prof. Ruggiero’s Virus-Fighting Probiotic Studies

CFS Patient Advocate blogger Chris Cairns explains the research being done on the probiotic GC-MAF 314 as a therapy for MECFS by prof Marco Ruggiero and Dr. Paul Cheney, as well as work that Dr. Derek Enlander is doing on a similar probiotic (MAF878). The article, with a video of prof Ruggiero’s presentation shot by Peter Cairns, was posted Aug 15 HERE.


Migraine: Male Brain Says Ouch but Female Brain Says OUCH

Re: Women & Migraines: Females’ Brain Structure May Increase Pain Of Headaches, Study Suggests

According to this Harvard study, scans of migraine sufferers brain shapes and features found that the brains of female migraine sufferers clearly have thicker gray matter than male migraineurs in two areas thought to affect the severity of headache pain.


Kinesio Taping – Olympic Favorite for Muscle Injury

Apparently kinesio tape’s not really new, but so many 2012 Olympic athletes wore it that the sports and pain world is curious. Essentially it’s not a rigid stabilizer like athletic tape but rather a soft stretchy tape that allows support and stability for muscles and joints without restricting the range of motion. The inventor (Dr. Kenzo Kase) saw it as a gentle circulation stimulant for injured muscles. Apparently it’s also a kind of warning if you are extending a part of your body – like a shoulder with rotator cuff problems – in a way that could cause injuries. For more info, see the Kinesio website.


Chemical & Drug Sensitivities Rarely Flagged by PC Docs

Re: Chemical/Med Intolerance Affects 1 in 5, Rarely Diagnosed

People (like myself) with MCS end up avoiding doctors because we get treated like we’re crazy…but I think the article surveyed people who didn’t know about MCS at all. The 20% that met the criteria for being chemically sensitive were probably not aware of their condition. The irony being that if they were aware and sought medical help for the condition they would not be treated for it because most doctors think it’s not real.

I think what the article is saying is that if doctors recognized MCS as being real, they could prevent a lot of the illnesses that their patients come to them for. Since neither the patient nor the doctor recognized the true problem, the patients keep coming back again and again for treatment for all kinds of chronic conditions. It’s one of those negative feedback loops. The medical community and the drug companies make money off of keeping people sick. – J

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