This week’s fibromyalgia and ME/CFS news (week of September 14, 2015)

This week's fibromyalgia and ME/CFS news (week of Sept. 14, 2015)

Top stories …

Pfizer loses its legal bid to force UK physicians to prescribe Lyrica for neuropathic pain instead of cheaper generics. The decision opens the door to “cheap copycats” of the drug. Pfizer, of course, is appealing the court ruling.

Here’s a fun headline for you: “I couldn’t get out of bed for eight months [due to ME]Now I’m a burlesque stripper.” According to the woman featured in this story from the Mirror (UK), she’s lived a “normal life” for the past nine months … thanks to burlesque dancing! I bet your friends never suggested THAT as a treatment!

Fighting back: Two California women plan to appeal their losses in federal court last month over Cymbalta’s withdrawal symptoms. The women claim drug-maker Eli Lilly & Co. downplayed the severity of symptoms experienced by patients who stop taking the drug commonly prescribed for fibromyalgia.

Research …

As a partner piece to his 2015 list of ME/CFS research studies funded by the National Institute of Health (US), Health Rising’s Cort Johnson compiles a similar list for fibromyalgia. The NIH appears to be putting less emphasis on what causes fibromyalgia and more attention on treatments – many of which involve mind/body and alternative therapies, such as cognitive behavioral therapy, Tai Chi and acupuncture. (I’m guessing our cure isn’t on the NIH’s list…)

Hemispherx Biopharma links low NK cell activity to ME/CFS and publishes its latest findings from a small study using Ampligen to increase NK activity.

New Philadelphia (US) study says children with fibromyalgia don’t need drugs, but can be treated successfully with intense physical and occupational therapy.

More than 30 percent of persons with primary Sjogren’s syndrome may also have fibromyalgia, according to new Korean study.

Treatments and tools …

Got pain and fatigue? There’s a new FREE app for that! ProHealth launches “the most comprehensive 8-in-1 chronic pain management app.”

AVACEN Medical invents a “mystery machine.” Just stick your hand into AVACEN’s new over-the-counter pain device, and your pain will dissipate. And guess what: There’s a money back guarantee… (This is not an affiliate link.)

Chicago-area (US) neuropsychiatrist discusses using hyperbaric oxygen therapy to treat fibromyalgia patients (written interview).

Personal stories …

Stuart Murdoch of indie band Belle and Sebastian talks about his life with ME/CFS (YouTube, 20 minutes).

Just ME blogger Sally Burch shares her experience with ME (YouTube, 22 minutes) during the ePatient conference in Belfast, Northern Ireland. Topics include how ME is “socially unacceptable,” how exercise aggravated her symptoms and how she used online information to guide her own treatment plan, instead of following National Institute for Health and Care Excellence recommendations.

EmpowHER features the ME/CFS advocacy work and unstoppable spirit of my friend Michele Krisko.

TheFibroGuy.com and Fibromyalgia Action UK are partnering to produce a DVD, and are looking for people who are willing to share their personal experience with fibromyalgia or other chronic pain syndromes. If you’re interested in sharing your journey, contact director Adam Foster at TheFibroGuy.com.

Books …

Dr. Bruce Campbell, one of the U.S.’s most well-known ME/CFS docs, releases a new edition of his book, “Managing Chronic Fatigue Syndrome and Fibromyalgia: Feel Better, Take Charge, Regain Hope.” This is the first update since the 2010 edition, and includes much new material, including an expanded section on pacing. (This link is NOT an affiliate link.)

Helpful links …

Can you believe it’s nearing Halloween? About.com’s Adrienne Dellwo shares some helpful advice on “Finding a Halloween Costume with Fibromyalgia & Chronic Fatigue Syndrome.”

MedPageToday publishes an excellent primer on ME/CFS in “Chronic Fatigue: A Call for Real Answers to a Real Disease.” Lots of great background info here on the recent Institute of Medicine report, funding issues, theories on cause, future research and much more.

Everyday Health helps us better navigate our face time with our physicians in “8 Ways to Get the Most Out of Your Next Doctor’s Visit.”

Upcoming event …

The National Fibromyalgia & Chronic Pain Association and the International Myopain Society will host the Inaugural Treating and Preventing (TAP) Chronic Pain Conference on Oct. 8-10 at the Crystal Gateway Marriott Hotel in Arlington, Virginia (US). The two-day program is intended to educate health professionals and people with fibromyalgia or other pain conditions on how to treat/prevent these conditions. The programming will include helpful resources, scientific research and information on treatment options.

In case you missed it …

Last week, I wrote a popular post on “What You Need to Know about CBD Oil and Fibromyalgia.” It covers all the basics: Why is it? Does it work? What’s the research say? Is it legal?

Off topic …

As a former sufferer of urinary tract infections, I wanted to share Prevention.com’s “5 Myths You Probably Still Believe about Urinary Tract Infections.” (Don’t miss the one about cranberry juice!)

You may be catching on to my affinity for beautiful photography. Here’s more eye candy: “The 40 Most Breathtaking Abandoned Places in the World.” Some of these are haunting … and maybe just a little bit creepy.

What did the travelers aboard the Titanic eat for lunch before their doomed vessel sank? Find out in “The Titanic’s Last Meal Menu For Sale.”

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