Hot Topics & Readers’ Notes – 02-08-12

Latest LeRoy Mystery Illness News

The latest in the LeRoy, NY, mystery illness saga is a report by UMDNJ PANS specialist Rosario Trifiletti that he found evidence of Strep infection (5 of 8) and Mycoplasma infection (7 of 8) in the tissue & blood samples he collected. PANS stands for Pediatric Acute Onset Neurospsychiatric Syndrome, which can be caused by a variety of pathogens including Strep.


Would You Take Part in a Rituximab Trial?

The ME Association is running an opinion poll asking “If the MEA Ramsay Research Fund helps to fund a high quality Rituximab trial, would you be willing to take part?” They invite responses from outside the UK. (So far, 58% of respondents say Yes, definitely.) NOTE: They are not looking for volunteers or collecting names. The Ramsay Research Fund is reportedly still seeking “a suitable clinical group that wants to carry out a clinical trial.” But if volunteers should be required in future, they will post an announcement then and you can sign up to receive emails. For information and to find the survey, go to (scroll to bottom, to the right).


Map of High-Risk Lyme Areas Published

It may not be surprising to anybody familiar with Lyme, but a new map of Lyme risk in the eastern half of the US – as far west as North Dakota – also shows where it likely is spreading (yellow areas and spots). The infection may be present in an area for some time as the number of ticks carrying it increases and cases are identified. And this is only data through 2007. This very large collaborative study, led by the Yale School of Public Health, actually had volunteers go out and drag sheets through the woods at 304 sites to collect, count, and test ticks. The report includes detailed, enlargeable maps (“Human Risk of Infection with Borrelia burgdorferi, the Lyme Disease agent, in Eastern United States.”)


Videos of the Ottawa Patient Day Presentations on ME/CFS and FM

Canada’s ME/FM Action Network, host of the 2011 IACFS/ME Conference in Ottawa, has posted videos of the presentations made during patient day. These include “How I Help CFS/ME Patients in Canada,” by Dr. Byron Hyde, and others by Anthony Komaroff, Leonard Jason, Fred Friedberg, Roland Staud, disability expert Hugh Scher, Allison Bested, Eleanore Stein, Lydia Neilson, Staci Stevens, Annette Whittemore, and Nancy Klimas – plus a panel discussion.  They’re on vimeo at


How to Help Your Doctor Understand ME/CFS Disability

Re: “How to Help Your Doctor Understand ME/CFS Disability: The Difference Between Activity Limitation and Fatigue”

Article review: FIVE STARS. This Doctor posits that if we quantify our fatigue it will help our Physician understand CFS. Not only does he provide sound reasoning, he also shows HOW TO make this method work with numbers and charts. I plan to print this out and begin keeping track of my numbers as this article suggests. – L

It’s a great article but the very severe may have only 5 mins of activity or none at all. It’s so important to the non MEcfs sufferer to understand that not all MEcfs patients would have even the lowest score of activity time per day. Thank you to Dr. Bell for this great chart very good idea. – S

I have both M.E. and FM/MPS complex, etc. and have never used the term “fatigue” to describe how I feel as it’s not technically very accurate. What most of us feel is a debilitating weakness like someone is gradually poisoning us – a “sickly weakness” if you will. Fatigue/tiredness involve most other chronic illnesses. I find that I also garner more respect as a patient when I don’t use the words “fatigue” or “tired.” As a former professional ballet dancer I know what it’s like to feel extremely tired/fatigued. Usually, some rest, sleep (something we, unfortunately, don’t get much of), vitamins and an epsom salt bath did the trick. I was “tired/fatigued” but did not feel “sick” or unable to get back to class, rehearsals and performances by the next day. I didn’t feel “weak” or “drained.”

Regarding Dr. Bell’s latest article, I agree that one should be more specific as to the “degree” of their abilities to perform certain activities. It’s difficult for a physician (even for some of the best) to determine if the “fatigue” is illness-related or from being over-worked…or due to a minor and very easily treatable condition like possible anemia, etc. I suggest that patients (and doctors) be more specific w/ language as “fatigue” and “weakness” aren’t synonyms. 😉 Hence, one of the reasons I’m not a fan of the inaccurate, misleading and completely insulting names CFS and CFIDS…

I always enjoy Dr. Bell’s take on all things ME and FM. I wish more doctors had his knowledge and compassion. Thank you, Dr. Bell!  To Healthier Days! – B


Canary Report Founder’s Success on Gupta Program

For months, Susie’s Canary Report blog about Multiple Chemical Sensitivity has been dedicated to a description of her experience with Ashok Gupta’s Amygdala Retraining program. She reports she is so much improved that a brush fire in her neighborhood did not cause her symptoms. And now, sadly, Susie will not be reopening the Canary Report Network, which included 1400 members when put on hold when she began the Retraining.


Study Adds to Evidence of Cannabinoids’ Potential Benefits

Karen Lee Richards – HealthCentral’s lead patient expert on ME/CFS & FM, has posted a thoughtful blog (“Cannabis Boosts Effect of Opioids for Chronic Pain Relief”) on a new study which “suggests adding a cannabinoid to opioid therapy may result in greater relief of chronic pain at lower doses.” The study – “Cannabinoid-Opioid Interaction in Chronic Pain” – was published in the December issue of Clinical Pharmacology & Therapeutics.


Petition Requesting Labeling of Genetically Modified Foods

Genetically engineered foods are appearing on supermarket shelves with increasing frequency. While the scientific debate about the benefits and risks of genetically engineered crops is vigorous and unlikely to reach a consensus anytime soon, you have a right to know what you are eating now.

Stand with EWG and the Just Label It campaign today and sign our petition to the FDA demanding that genetically engineered foods are labeled! Click here  to watch the video and sign EWG’s petition.

Environmental Working Group (


Coping With Phone Issues

Re: “Coping with Phone Issues When Illness Limits Energy”, by Bruce Campbell, PhD

Having been diagnosed with FM 20 yrs ago, this is the first time I’ve seen telephone issues addressed. I had not realized that my aversion to talking on the telephone was really because it exhausts me. I am an admin. secretary and thankfully most calls are not lengthy but I really avoid talking on the phone at work and home as much as possible. I do use an answering machine at home.

The suggestion of lying down comfortably (at home LOL) helps, but the phone needs to be resting say on a pillow. Holding the phone is so tiring; now I “have seen the light” as to why, and the article’s suggestions will help me. Thanks, Dr. Campbell, for the insightful strategies. – P


Fibromyalgia-Like Pain a Cause of Orthostatic Dysfunction?

Re: “Autonomic cardiovascular control and responses to experimental pain stimulation in fibromyalgia syndrome”
This abstract is quite technical, but it finds that FM patients have impaired cardiac baroreflex sensitivity. The baroreflex involves sensors in blood vessels – baroreceptors – that normally communicate with the central nervous system as needed to maintain blood pressure stability. When pain was induced by plunging the subjects’ hands in cold water, baroreflex sensitivity declined.


FM Survey Needs Your Input

Martina Hughes, with the Clinical Psychology Programme at the National University of Ireland Galway, invites fibromyalgia patients to participate anonymously in a study involving completion of a series of online questionnaires (requiring about 20 minutes). As she explains it:

“Studies with other groups who suffer with a range of illnesses (e.g. cancer, multiple sclerosis, HIV) have shown that people also grow and change in a positive way as a result of their experience of such illnesses. This study aims to find out more about reports of benefit finding and growth among individuals who suffer with fibromyalgia.

Participants will be asked to complete a series of questionnaires online. These questionnaires will ask you about living with fibromyalgia. Questions relate to coping with the condition, social support, psychological distress, thoughts about pain, aspects of your personality and the level of pain you experience. You will also be asked to complete a questionnaire about benefit finding…

Here is a link to the survey: It is my hope that this study and others like it will contribute to our understanding and treatment of the condition in the future.

Martina Hughes, NUI Galway


25-Center Intersitital Cystitis (Painful Bladder) Trial

A total of 25 centers in the US and Canada are or will be recruiting for this Interstitial Cystitis (painful bladder syndrome) therapy trial. The 2-week trial involves a device that delivers lidocaine to the bladder. The phase 2 investigational trial will be placebo controlled initially, then followed by an open label extension for all participants who wish to receive the active treatment. For information, click HERE.

Interstitial Cystitis Association eNews


New Drug for FM, IBS, TMJ and Other Pain?

Q: Just wondering whether you have heard of the new treatment for neuropathic pain called “Normast” which was presented at the congress for “New Therapeutic Perspectives in Neuropathic Pain” in Italy in October 2011. Website is I haven’t tried it yet but it looks promising for fibromyalgia, IBS, IC and vulvodynia as well as other types of chronic, intractable nerve pain. Your readers/members may benefit from knowing about this. It’s very new. Best regards – A

A: We hadn’t heard of it, so thank you very much for the information.


UK Hub Site for School Age ME/CFS Patients

Action for ME offers a site for students with ME/CFS There are resources for children 12 and under, teens 13 to 17 and college/university students. Tips for 12 and under for example, include “Common questions” they may have about ME, “Telling your friends,” and “How to explain your illness to your teacher.” For teens, there is information about the issues involved in planning to go to university or getting a job. And for older students the issues involved in being a student or returning to higher education after an interruption; plus other further education qualification options.

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One thought on “Hot Topics & Readers’ Notes – 02-08-12”

  1. DTomei says:

    The correct link for the fibromyalgia survey is

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