Hot Topics & Readers’ Notes – 1-18-12

In Memory of Dr. John Lowe

We were saddened to learn that fibromyalgia and thyroid specialist Dr. John C. Lowe passed away on January 9, 2012, from complications of a head injury he sustained last fall. Dr. Lowe founded the Fibromyalgia Research Foundation, and is widely known for his work to understand the role thyroid dysregulation plays in many people diagnosed with FMS. See thyroid expert Mary Shomon’s tribute to Dr. Lowe HERE.


Mysterious Neurological Disorder ‘Outbreak’ in Leroy, NY

Last fall at least 12 school girls grades 8 to 12 in little Leroy, New York developed a mysterious neurological condition that involves severe ‘Tourette-like’ involuntary movements. Supposedly the HIPPA law against sharing personal medical information has prompted the state health department to ban a public report on the cause of the illness; and they say they have ruled out any environmental factor or pathogen involvement. Parents say the disorder has been described as ‘stress-induced’ and is being treated as a psychological result of stress – a notion they say they regard as highly suspect. See Jan 17 Today Show segment HERE.

Some speculate the cause is a controversial disorder called PANDAS – Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections (e.g., strep throat or scarlet fever). One theory is that PANDAS is caused by antibodies which interfere with nerve cells. Many questions remain, including whether an undisclosed and transmissible pathogen is at work.


Established Lyme Infection May Foil Antibiotics

Researchers at Tulane, UC Davis, and Yale found in a trial employing monkeys that once Lyme infection was established even aggressive antibiotics did not kill all the Borrelia burgdorferi. Small numbers of intact spirochetes were found in lab-raised ticks that fed on those monkeys.


Latent Herpes Virus Reactivation Tracks Fatigue, Stress

Re: “Fatigue in Medical Residents Leads to Reactivation of Herpes Virus Latency”

This study measured signs of latent herpes virus activation (viral DNA levels) in connection with the varying fatigue and stress levels of medical residents. They found significant increases in viral load that suggest immune suppression during times of greater fatigue and stress; though during the study the viral activation never increased so much that symptoms became evident in these healthy young subjects.


How I Deal with Lack of Family Support

Re: “Facing Lack of Family Support: Will You Be a Teacher, Ninja, or Escapee?”

I’ve found the best way to convey the severity of my CFS/ME is to describe a particular occurrence in detail. I realized this by chance when I casually told a friend, “I knew I would have a good day today because I didn’t have to lean against the sink while brushing my teeth.” She had been a friend for years, both while I was well and I was sick, but, she said, she didn’t “get” the severity of my illness till she heard that. Recently, I told someone who didn’t quite “get” it, “I needed a shower but knew I couldn’t stand up long enough, so I just knelt instead.” That got through. Another one was, “Yes, I had a good day – enough energy to drive to WalMart and shop – but I did have to sit on the floor while waiting on line.”

I’m sure we all have examples of things no healthy person ever thinks about that we simply cannot do. Those vivid examples seem to be communicate more than general statements. – S


Video: Doctor Pokes Fun at Fibromyalgia Disbelievers

Dr. Kevin White, MD, PhD, has made a video ( “poking fun at the fibromyalgia critics, while arming those who suffer with it the ammunition they need to fight back.” Dr. White is author of Breaking Thru the Fibro Fog (Scientific Proof Fibromyalgia is Real).


Celiac Patients’ Quality of Life Improves Dramatically after Diagnosis

A random survey of more than 1,000 celiac disease patients in Sweden ( found that their average health-related quality of life score the year before diagnosis/treatment was 0.66 (with lower average scores for those who were younger at the time), vs. 0.79 for the general population. But after diagnosis and treatment the average for celiacs increased to 0.86 – well above the general population.

Unfortunately, the researchers note, the average delay in diagnosis after first symptoms is still 9.7 years in Sweden, and even after the first visit to a doctor about the symptoms, it is still 5.8 years.

Interesting data were that 52% of the celiacs were female, 96% complied strictly with the gluten-free diet, and 11% had a household member also with celiac disease. Decades back when this was considered a childhood disease in Sweden, the average age at diagnosis was 2; now with knowledge that symptoms may emerge or worsen at any age, it is 46. Since celiac disease is so common the researchers suggest that physicians look for it more actively.


Blood Test to Detect ‘Mad Cow’ Prions Offered in UK

Neurologists in the UK have been notified that a blood test to detect prions is now available to test patients suspected of having ‘variant CJD’ – aka mad cow disease. According to the UK’s Channel 4 News report, so far the test has produced no false positives, and is being used to screen blood 5,000 anonymous US samples from the Red Cross (where generally no positives would be expected).

Next, 50,000 anonymous UK blood samples will be tested to better quantify how many people are infected. (A best guess is that about 15,000 people in the UK may be infected.) And possibly the test would become a part of routine blood bank screening.


Connection Between Chronic Fatigue Syndrome (ME/CFS) and Multiple Sclerosis?

Q: Is there a connection between CFS, FMS, and MS? My daughter came down with Mono at age 34. She’s now 51, and in the last year, she’s been told she has all the symptoms of ‘relapsing/remitting MS’. I’m just hoping she has a really terrible case of CFS.

A: You likely have been reading about the new discovery at Queens College that the ‘mono’ virus Epstein-Barr can ‘hide’ in the central nervous system and activates an inflammatory immune response in the brain that causes the MS lesions. (Other recent research indicates EBV seems to get into the brain through the olfactory bulb, which is a relatively unprotected doorway to the brain.) EBV is so often implicated in initiation of Chronic Fatigue Syndrome, and CFS also involves brain lesions, so a similarity seems possible.

The Queens College discovery is good news because it provides a target for figuring out ways to relieve, stop or prevent MS lesions, and suggests similar studies involving potential EBV involvement in those with other neuro-immune illnesses. Certainly some people are diagnosed with ME/CFS and MS, though we are unsure of any statistics on that.


Chicago Support Group Joins National Patient Advocacy Coalitions

The Chicago CFS, FM & Chemical Sensitivity Coalition of Chicago (CFCCC, or ‘Canaries’) has joined two national patient advocacy coalitions (Coalition 4 ME/CFS and Coalition 4 Fibromyalgia) formed to increase clout through collaboration. Other members are listed here. They include two groups representing neighboring states – the Wisconsin ME/CFS Association, and CFS Solutions of West Michigan.


Budget $1,000 Genome Maps Coming Soon

By the end of this year, $1,000 will get you a map of your genome – your entire genetic makeup – in a day, the Wall Street Journal reports. The first machine reportedly able to do this had its debut this week (offered by Life Technologies, a genomics company in Carlsbad, CA). More is learned every day about genetic involvement in health conditions, and about how our genes affect the benefits of supplements, medications, and diet. So with our genome in hand we should eventually be able to benefit.


Cause of Honey Bee Death: Seed Insecticides in Air and Pollen

Why is the US losing about one-third of its vital pollenating honey bee hives each year? In large part because of the insecticides used to coat seeds, including corn and soybean seeds, before planting, according to new evidence reported by researchers at Purdue. These neonicotinoid insecticides – deadly for bees – are present in high concentrations in a talc-like substance that is used to keep the sticky seeds flowing freely and is exhausted into the air by machines during planting. The poisons were found in high levels in the crop and other pollens that the bees gather, remain in the soil for years, and explain why bees have been dying in large numbers around fields at planting time.

This is not news in European countries where these insecticides are banned, but the Purdue report may make it harder to ignore. See “Nicotine Bees” film trailer.


Lupus Health Expo 2012 in Atlanta, May 12-13

Booths are available and registration is open for the 2012 Lupus Health Expo, to be held May 12 & May 13 at the World Congress Center in Atlanta. Already the event has 5,200 attendees, and that number is growing. This is a great opportunity for exhibitors or sponsors to reach out to patients and advocates. Potential attendees may visit to review available workshops and presentations, and to register. Or call 877-467-7726 for more details.

Leonard Giso, Director of Operations, Convention Planning Services, Atlanta


FM Conference in West Sussex to Feature Key Researchers, April 6-9

The third annual Fibromyalgia Conference and Pamper Weekend is scheduled for Easter Weekend April 6-9 at the Chichester Park Hotel in West Sussex. A dozen presentations and as many workshops and classes are planned, with world-renowned fibromyalgia researchers Professor Muhammad Yunus and Dr. I Jon Russell on the schedule. For details and to register  click here.


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 condition, illness 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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