Hot Topics & Readers’ Notes – 02-22-12

Epstein-Barr Virus Discovery Triggers Hope for Treatment

Re: “A single protein helps the body keep watch over the Epstein-Barr virus.”

Researchers at Children’s Hospital Boston have discovered how the immune system normally subdues the Epstein-Barr herpesvirus (a cause of mononucleosis and considered a common intracellular reactivating virus in ME/CFS and fibromyalgia). “About 1 in a million” of the viruses infect B cells after acute infection has been cleared, and hide away there. Memory T cells keep them in check, unless something suppresses the immune system enough to break through this defense. At that point the virus can reawaken and drive pathologies such as the development of B cell lymphomas. The researchers’ discovery of how memory T cells normally subdue EBV (an EBV surveillance trigger) has allowed them to devise and begin testing a new therapeutic approach for overcoming EBV reawakening, and subduing the resulting diseases. See the abstract of their report in the journal Cell, HERE.


The Joint Hypermobility-Fibromyalgia Connection

Re: “Joint Hypermobility and Fibromyalgia” 

In this article, HealthCentral ME/CFS & FM chronic pain expert Karen Lee Richards describes a study involving hundreds of children, which found that the large majority of kids with fibromyalgia had joint hypermobility (joints that can bend farther than normal). She describes the condition and the kinds of fibro-related problems & pains it may cause.


Poll on Hair Problems with Fibro ME/CFS & Fibromyalgia blogger Adrienne Dellwo has posted a poll for fibro patients on problems with hair – and hair loss, hair products, scalp, related pain, etc.

“Every time I write about fibromyalgia hair problems here, it gets a huge response,” she says. “A lot of people don’t even realize their hair issues could stem from their illness. I thought it was time to take a poll and see which problems are most common in us.”


Those Weird Fibromyalgia Symptoms – ‘Silent’ Migraines?

Re: “Silent Migraine – Did You Know?”

Many people are unaware that they sometimes have migraine symptoms that skip the headache phase. Some of the symptoms can seem like what people call a mini-stroke (so it’s good to see a specialist about those to see if it might be just silent migraine) – and many other symptoms are like the kinds of “random” and unexplained symptoms fibromyalgia patients can have.

Symptoms can be speech disturbance, aura, vision changes such as flashes flickering lights, zigzag lines or waves, spots, stars, shimmering, colors, etc. But also tingling, pins & needles, odd sensations in part of the body; clumsiness/weakness in arms or legs; dizziness, confusion, vomiting, stomach pain, or mood change. Thanks for this link to the Hunter Hopkins Center Facebook page!


FM Treatment-Effectiveness Poll Gives Naltrexone High Grade

The CureTogether site runs patient surveys and graphs the results. Currently the site has 1,249 registered members who respond to surveys on fibromyalgia topics. This graph (“89 Fibromyalgia Treatments Compared”) maps out the reported relative effectiveness of 89 possible treatments, from minus 0.2 to plus 1.2. The more effective dots fall in the dark and medium green shaded areas. Pink area appears to represent, if anything, negative impact.

Notably, the three FM prescription drugs fall in the pink area – while another drug, low-dose naltrexone, is rated by far the most effective treatment, though used by relatively few FM patients so far. (Dots further to the left have been used by fewer patients, and those further to the right on the chart have been tried by more respondents.)


IBS: Murphy’s Law for the Bowels!

Re: “A Doctor’s Natural Strategies for Irritable Bowel & Constipation Relief” 

Re your article on IBS – There are three kinds:

1. Your system is always on ‘fast forward.’

2. It varies back and forth from ‘fast forward’ to ‘totally stopped.’

3. Totally stopped.

I have the first kind, and found a solution: I take Lomotil when I first get up. Then I CAN’T eat for at least 2 hours. After that, I’m fine.

But one solution for all three – plenty of healthy fiber – and in the case of 3, walk as far as you comfortably can. Or, lacking that, visit a library or phone booth. It ALWAYS hits me then! Murphy’s Law for the bowels! – P


Dr. Oz on Weight Loss & Sea Buckthorn

Last summer, Dr. Oz got weight watchers buzzing with his coverage of a study on the weight-control potential of Sea Buckthorn a berry native to Tibet that contains 190 biologically active nutrients, and is a rare source of the fatty acid omega-7. His report featured two mice – one normal looking and one very, very fat. The two had participated in a trial that put mice on a super high fat, high calorie diet, then began feeding half of them Sea Buckthorn seed oil. The unsupplemented mice continued getting fat and the supplemented mice did not, until at the end the supplemented, normal weight mice weighed just ½ as much as the others.

ProHealth has just added Sea Buckthorn to our store, with a focus also on its more well-known ability to soothe and support healing & regeneration of mucous tissues including those in the stomach, gut and urinary tract – while on the outside promoting healing benefits for challenged skin.


PA Bill on Lyme Treatment & Insurance Up for Vote in March

Pennsylvania House Bill on Lyme (#272) is on the house floor with a vote reportedly expected in March. Essentially the bill calls for recognition of and education about multiple standards of care for Lyme including insurance coverage of longer term antibiotics if prescribed by a doctor.

PA residents and Lyme patient advocates are urged to contact their state representatives and ask them to vote for the bill. (See Lyme Action PA site Thanks for this news to the XMRV Global Action Facebook page!


Research Revealing Vitamin D’s Role in Immune Function Support

An increasing body of research points to involvement of vitamin D in a number of the body’s immune protective mechanisms. Some of this groundbreaking research is being conducted at UCLA’s Hewison Orthopedic Research Lab. They write: “We now know that in addition to its classical effects on the skeleton, vitamin D is a potent regulator of other important physiological responses. Prominent amongst these effects is the interaction between vitamin D and the immune system. In collaboration with Dr. Robert Modlin and Dr. Philip Liu at UCLA, we have established a series of studies to explore the antibacterial properties of vitamin D.” See “Non-classical effects of vitamin D: Antibacterial Effects,” including D’s role in support of natural mechanisms for defense of the developing fetus, and support of barrier function in the GI tract.


At-Home Rehab DVDs for Neck & Shoulder, Back, Hips & Knees

Re: “New Pain Relieving DVDs Released by Rehab in Motion for At-Home Physical Therapy” 

If you have limited or no access to strenghthening and healing physical therapy/rehab, about $30 gets you guided, professional rehab therapy instruction as long as you want to work on it, at home. There are DVDs for: chronic back & neck pain, shoulder & elbow range of motion and strength, and hip & knee function and strength. Developed by well-known orthopedic surgeon Samuel Hess, MD.


Whittemore Peterson Receives $403K DOD Grant for Gulf War Illness Research

“WPI was recently awarded a $403,050.18, two-year grant from the Department of Defense (DOD) Gulf War Illness (GWI) Research Program of the Office of Congressionally Directed Medical Research Programs. WPI will work with the VA Sierra Nevada Health Care System [in Reno] to identify potential pathogenic agents and immune markers in a cohort of patients with GWI. The main goal of the project is to identify significant differences in immune parameters and any underlying pathogens potentially contributing to the origination and development of GWI.”

Whittemore Peterson Insitute Winter 2012 Newsletter


Doctors Dismiss, Undertreat, Misdiagnose Women’s Chronic Pain: ABC News

Re: ABC News Report, “Women’s Chronic Pain Misdiagnosed, Undertreated, Dismissed” 

The Feb 14 Congressional Hearing on Chronic Pain (“Pain in America: Exploring Challenges to Relief,” prompted ABC News to create this report featuring women’s testimonies to the attending Senators, describing how their doctors have not taken their pain seriously (even post surgical and cancer pain), attributing it to emotional imbalance. The feature quotes facts such as that “Doctors are 22 times more likely to recommend that a man have surgery for knee pain than a woman.”

The “Pain in America” hearing focused on recommending better physician education to boost their recognition of chronic pain and training of more doctors in integrative medicine for a multi-system approach to pain; less on narrowly focused specialties. (See CFS Alert Video # 19, in which co-host Llewellyn King interviews Sen. Tom Harkin, D-Iowa, who called the hearing.)

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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