From Our Readers – Comments & Suggestions 10-19-11

Doctors May Underestimate Pain of Patients they Don’t Like

This study just supports what a lot of us have discovered on our own about the benefit of a good relationship with our doctor. – L [“When you dislike patients, pain is taken less seriously.”]


Fast, Automatic Drug Interaction Checker

AARP has an online drug interaction checker []. On the right, you can scroll through many choices of drugs, or go to the right and type in your drug. Continue doing this with all your meds. When finished, scroll down and you will find helpful messages about potential interactions, when best to take meds, etc. – T

CFSAC Meeting Nov 8-9 – Preregister for Oral Testimony by Wed, Oct 26

The October 5 issue of the Federal Register announced that the next meeting of the CFS Advisory Committee will be November 8 & 9 in Washington, DC – and will be held in a different place (the Holiday Inn Capitol). The agenda, which has not been developed yet, will be posted at The announcement gives specifics on how to pre-register to give oral testimony (by Wednesday, October 26). Note it’s first-come first-served, with priority given “to individuals who have not presented public comment at previous CFSAC meetings.”

Apparently there will be real-time audio coverage of the proceedings and “the meeting will be recorded and archived for later “on-demand viewing” on the CFSAC Web site” ( – H


British Columbia Lymie Patients Need Your Help

Lymie patients in BC need your help – please sign the petition here [“Implement Recommendations Outlined in Schmidt Report 2010”]. If you are not in BC you can still sign and say that you support your friends with Lymie disease in BC. – G

Note: the petition asks the BC govt. to adopt recommendations for offering accurate Lyme testing, educate MDs to diagnose Lyme, and allow MDs the freedom to provide long-term antibiotics for chronic Lyme. When we looked, 1,128 signatures had been collected.


Good Magazine Site for Caregivers

I happened on a magazine site [free, offered by the Alzheimer’s Foundation] that had some very good articles for caregivers. I find that a lot of the information would have been helpful to me earlier in my journey with my Mom. I hope it will help someone. This site is: – K


New York Times Slideshow on People with Multiple Chemical Sensitivities

On September 17, the New York Times Sunday Review published an online documentary slideshow on MCS. You can click through to see 22 photos of people with Multiple Chemical Sensitivity, with annotations. It’s titled “Canaries: Everything Makes Them Sick.”

The Canary Report Blog (

Note: Susie Collins, The Canary Report Editor, has taken a 6-month leave of absence starting Oct 3, to do Ashok Gupta’s  Amygdala Retraining Program. Susie says she will be journaling the Amygdala Retraining experience, and during her absence new blog entries will be limited to her posts on that experience.


Petitioning the FDA to Label Genetically Engineered Foods

If the food in your grocery store has been genetically altered, shouldn’t it be labeled? We think so. That’s why Environmental Working Group teamed up with the Just Label It campaign last week to tell the Food and Drug Administration that Americans want labels on genetically engineered food.

We were overwhelmed by your response – more than 20,000 EWG supporters signed our petition. We want to get that number up to 30,000 to make sure the FDA hears us loud and clear. Will you add your voice today? Click here to sign our petition to the FDA demanding that genetically engineered foods be labeled [and to view the related video “Dining in the Dark”] – Tell the FDA to label genetically engineered foods!

Right now, there is no labeling requirement for these foods, which have been altered at the molecular level. Yet they are appearing on more supermarket shelves than you’d think. In fact, 94% of all U.S.-grown soybeans are genetically engineered, and 60% to 70% of processed foods likely contain some genetically engineered ingredients.

EWG believes you have the right to know what you are eating. While the scientific debate around the benefits and effects of genetically engineered foods continues, it should be your choice whether or not to eat them. Japan, Australia, the European Union and even China already require labeling of genetically engineered foods. It’s time for the U.S. to catch up….

Ken Cook, President, Environmental Working Group (


Dr. Charles Lapp’s Summary of the Ottawa IACFS/ME Conference

Dr. Lapp provided a ‘Cliff’s Notes’ summary of highlights from presentations at the 2011 IACFS/ME Conference in Ottawa, for all the patients and advocates who couldn’t be there ( Since there was a lot more on research than on treatment, he says the theme should have been “Not What You Expected” instead of “Translating Evidence into Practice.”



Advanced Lab’s New Lyme Borrelia Culture Test

Re: “Lyme Alert! New Borrelia culture test to confirm active infection & diagnosis, track therapy success”

WHOOPIE! I’m anxious to see the potential of this in helping us get more accurate reports on blood lab testings. – B


Mass CFIDS & FM Assoc. Educational Forum, Saturday, Nov 5

The Massachusetts CFIDS/ME & FM Association will hold its Fall 2011 Educational Conference on Saturday, Nov 5, from 1-3:30 p.m. at the Massachusetts Department of Public Health, U. Mass.-Hinton State Laboratory Institute in Jamaica Plain, MA. Meeting registration begins at 12:30 p.m.

Read about the event and register online now at

Note: If you join the Association or renew by Nov 5, the $10 fee will also be your ticket to attend! (Pay now or at the door.) See Dr. Komaroff’s take on the IACFS/ME conference, be first to learn about the new ME/CFS Physician’s Primer, hear what patients and physicians need to know about the diagnostic code changes, and much more.


Major Universities Join Race to Develop Pain-Detecting Technology

Re: “Towards a physiology-based measure of pain: Patterns of human brain activity distinguish painful from non-painful thermal stimulation” 

This Stanford trial of fMRI to measure perception of pain in the brain is the third article on so-called “pain-o-meter” research we’ve seen in the past few weeks. Each is an attempt to measure signs of patient-reported pain that can’t be confirmed by X-rays and other conventional tests.

The first report was on research at Harvard (“Brain imaging provides objective measure of pain intensity in Harvard chronic back pain study”).

And the second was a report on Uppsala University’s technology using PET scan imaging and an injected tracer substance that can migrate to areas of inflammation in the body (“Swedish Diagnostic Scan Can Locate & Visualize Chronic Pain.”) The Swedish research was funded by an insurance company seeking a way to locate pain in the area affected by whiplash injuries.

So with luck, one day patient “likeability” won’t determine whether a doctor will believe in his/her pain.(See first news note, above.)


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