From Our Readers – Comments & Suggestions 08-17-11

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Will Discovery Help Explain or Diagnose ‘Post-Treatment’ Lyme?

Researchers at Cornell and the National Institutes of Health have reported in Clinical Immunology that most people with “post-Lyme” symptoms they’ve tested have developed multiple types of antibodies that target multiple Lyme microbe epitopes. (Epitopes are the parts on the Lyme microbe’s surface that antibodies are designed to bind to.) They suggest this could happen during a “prolonged infection” where the microbe evaded the person’s initial antibodies by changing its epitopes over time, forcing the immune system to play catch-up while it survived. The number of different antibodies found in people who had no Lyme symptoms after antibiotic treatment was small by comparison.

Other suggestions are that these people just have a different antibody response to the infection, one that creates inflammation & causes post-Lyme symptoms (in which case antibiotics won’t help them). Or these people might have been successfully treated for a first infection but got another one that they were never treated for. Here is the Nature News story where I read about this (“Antibodies linked to long-term Lyme symptoms”), and here is the Clinical Immunology abstract. – L


Dressing for Comfort When You Have Sensitive Skin

HealthCentral chronic pain blogger Karen Lee Richards says, “Fibromyalgia has brought many challenges and limitations into my life, not the least of which is finding clothes that are not painful to wear… Although for some reason it is rarely discussed, I suspect many of you have a similar problem.” To read her good advice click here. (We had to laugh at one poster’s comment that she’s almost ready for ‘Larry King Suspenders’ to avoid elastic waistbands.)



UK Support Group Gets Energized

We know there are hundreds and thousands of people suffering with fibromyalgia (and ME/CFS) in England’s Surrey and Sussex counties who are unaware there is a support group for them and their families and friends (Fibromyalgia Support Group for Surrey and Sussex – We want to reach more of them; more doctors and nurses who can refer people to us; and potential sponsors who would enjoy doing an event for our group and charity. Could you please help us get the word out?

We have a blog spot (, we send out an eNewsletter (, and local groups have meetings that welcome all. If you want to become a member, or just receive our free eNewsletter, go to

Nichola Bond,  FMSSAS (


Guide to Safe Exercise for ME/CFS: 4 Videos at “Exercise Group” Site

Nancy Klimas, MD, director of the CFS Clinic in Miami, exercise physiologist Connie Sol, and ME/CFS patient/videographer Dan Moricoli have developed a multi-part video series to help people support healing through movement while avoiding post-exercise malaise (what the new International Consensus Criteria for ME call ‘post-exertional neuroimmune exhaustion’).

All four free videos developed so far are up and running at “The Exercise Group”  subsite that Dan created as part of the CFSKnowledgeCenter. Dan attributes his own improvement to the careful approach to safe exercise that Dr. Klimas and Connie discuss in these videos. Site visitors can register to ask questions and share information in the site’s Exercise & Physical Therapy Forum.



US News & World Report Ranking of Weight-Loss Diets May Surprise

US News & World Report organized a panel of independent experts to rank different commercial weight-loss plans. “The experts conducted a six-month assessment of 20 diets and diet programs, ranking them in seven categories: short-term weight loss, long-term weight loss, ease of compliance, nutritional completeness, health risks, and ability to prevent or manage diabetes and heart disease.” Here’s the result, with ratings on a 5-point scale & and some surprising differences: – D

Note: For news and information about weight loss & weight loss support tools such as a directory of local US exercise, movement and weight-loss classes, check out ProHealth’s Weight Loss subsite (


CFIDS & FM Self Help Discussion Group: Sign Up for Fall Quarter Now

It’s time to sign up for the fall session of the CFIDS & Fibromyalgia Self-Help Course. The course, which begins September 12, is a 6-week email discussion group that focuses on practical strategies for managing common problems of CFIDS and fibromyalgia. The cost of the course, which includes a copy of “Managing Chronic Fatigue Syndrome and Fibromyalgia: A Seven-Part Plan,” is $30. Visit our website to learn more and to register:

Bruce Campbell, Director, CFIDS & Fibromyalgia Self-Help Program


ME/CFS Author Katrina Berne Blogs on Brain Fog

You’ll enjoy Katrina Berne’s blog with advice on brain fog! [“I Can’t Brain Today: I’ve Got the Dumb”]. Dr. Berne is a guest contributor on and I read about this article on the wall of the Hunter Hopkins Center Facebook page. – S

Note: According to her footnote, “Katrina Berne, PhD, is a clinical psychologist specializing in telephone therapy with people with ME/CFS who are housebound or unable to find knowledgeable therapists in their geographic areas. She is the author of Running On Empty; CFIDS Lite; and Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible Disorders [with Dr. Daniel Peterson].  She has served on the Board of Directors of the CFIDS Association of America and lectured widely on the disorder. She wishes someone would figure it out already so we could all get back to what we were doing.”


UK-based Phase II Trial of Droxidopa for Fibro Pain Under Way

A phase II trial of different droxidopa dosing options “for alleviation of fibromyalgia pain has now recruited the target 120 patients and can begin.” Here’s the press release from droxidopa’s developer. The headline also says “Top-line data Expected by the End of 2011.” – V

Note: Droxidopa is now also in phase III trials for treatment of orthostatic hypotension [low blood pressure when upright] in patients with ‘primary autonomic failure’ (e.g., Parkinson’s disease), and is approved in Japan for treatment of orthostatic hypotension. How might it help FM pain? According to the trial press release, “Current research has focused on the role of norepinephrine (NE) reuptake and availability in the central nervous system. NE, a widely used neurotransmitter in the central and peripheral nervous systems has long been linked to both chronic pain and depression. Droxidopa, a synthetic amino acid, is converted by the body into norepinephrine and, as a prodrug of NE, provides replacement therapy for NE deficiency. While NE, as a catecholamine does not penetrate the blood-brain barrier, droxidopa, as a neutral amino acid, is able to do so thus providing both a peripheral and central affect on circulating NE levels.”


Whittemore Peterson Received a Chase Giving Grant – Thanks to You!

The Whittemore Peterson Institute would like to thank JP Morgan Chase and all of its supporters in the Chase Community Giving contest. We received our $65,000 grant today! Thank you for your continued support. None of this would be possible without our friends, your friends and your votes. Thank you so much 🙂

Congratulations to all of our fans who helped us win a $65,000.00 grant, through Chase Community Giving. Thank you to JP Morgan Chase and the entire community for your continued support of the vital work of the Whittemore Peterson Institute.

Whittemore Peterson Institute (


Is Summer Heat Robbing Your Medications of Proper Potency?

I was surprised to read that many medications are very heat sensitive. Everything from inhalers to insulin, thyroid medicine and anti-anxiety drugs can lose their potency and even be chemically altered by all the heat we’re having this summer. 104 degrees F is considered “excessive heat,” med-wise, and the inside of a dark car can get as high as 163 degrees. – O

[See more information and advice from Dr. Amy Peak, director of Drug Information Services at Butler University – “Heat and Medications. What’s the Risk?”]


Lyme Support Group Listing

LymeInfo.Net provides links to Lyme disease support group sites by state and area at This page also provides links to Lyme Meetup Groups and a Directory of Lyme Forums, Chat, Newsletters, etc.

And for those outside the US there is an International Lyme Information page at

LymeInfo (


Different Genes, Different Causes of Back Pain?

This article in The Vancouver Sun is reporting on research that found “disc degeneration and low back pain can exist independently of each other, and are caused by separate genetic factors.” It notes that until now the cause of most low back pain isn’t really understood, but now that these genetic differences are getting sorted out, entirely new avenues of back pain diagnosis and treatment may open up. [“Is back pain all in your genes? Research is challenging what we thought we knew.”] – A


Trial of New Way to Ease Constipation Caused by Opioid Pain Drugs

AstraZeneca is sponsoring [a] clinical trial known as the KODIAC study, which is evaluating whether an investigational drug may be safe and effective in treating opioid-induced constipation. [For details see]

AstraZeneca, Aug 6, 2011

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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