Our meeting this month Thursday, March 18, 7:00PM - 8:30PM (social time 8:30-9:00PM) is with Dr. Myra Preston, Diplomat in Neurotherapy and Cognitive Behavioral Therapy. Dr. Preston will present the latest in neurofeedback which has been most helpful to many CFS/FM patients as well as with other disorders.

The meeting is at Sharon Presbyterian Church, 0.8 miles south of South Park Mall; Sharon Presbyterian Church is located 0.8 miles south of SouthPark Mall on Sharon Road. Use the entrance closest to the mall. We meet in the Charles Little Activity Building (or CLAB), which is the brick building at the rear of the parking lot. As you come into the building, go into the first door on your right. This is the Parlor of that building where we have our meetings.

My husband and I hope to travel up north to visit family for Easter and will be gone about a week and a half and return around the 12th. I may not get the opportunity to send a reminder very early before the April 15th meeting. So be sure to write yourself a note, update your calendars, or ask a friend to call and remind you.

- April 15 -- Kelly Gibson, CLL - L.A.U.G.H. Laugh And U Generate Happiness; 704-724-3899 - Kelly will teach us how to use laughter to cope with chronic illness.

- June 17 -- Dr. Nancy Waring, PhD., a therapist who has CFS & Fibro will speak to us on coping with chronic illness

As always, I want to remind everyone who attends to be sure that you don't use perfumes or perfumed anything before coming to the meeting. It can be very toxic for some people. For those who may not be aware... MCS (Multiple Chemical Sensitivity) is a very serious illness that can be anywhere from mild to severe for some folks. Often this disorder accompanies CFS - I'm not sure about those with "just" Fibro. Dr. Lapp can answer that question.

From last month's newsletter and reminder - is the issue of sensitivity to heat and cold. This is very common with CFS and probably Fibro as well. At our meetings, we have about 4 heat/ACs and we can easily adjust the temperature. The problem comes when the room is either very cold or very warm when the first person arrives to set up for the meeting. They turn on the heat or AC. Later on it can get too warm or too cold so that its necessary to adjust the thermostat.

We can discuss this briefly at future meetings, but we could ensure that one side of the room is a bit cooler for those who get overheated easily and those who don't can sit on the other side. But we'll have to address the issue at the meeting to work this out. But any time you are very uncomfortable - either too warm - or too cold, please interrupt and let us know and we'll quickly adjust the thermostats. Kebbie or any of us on the Board will ask you at some point after the meeting starts whether we need to adjust the temperature. But do ask if you need to.

And as always, if you are having an achy day and need to get up and walk around, you know that you are free to do that. We have refreshments you can enjoy or browse the information table. Or just walk around. If you need to cool off quickly, you can step outside for a minute or two.

This information came to me from an Internet friend who is in Facebook re: the W-P Institute and a general CFS group. She offers this info to us:

Andrea Whittemore - Goad is putting a CFS book together from patients around the world. If you are well enough or interested, please email her your story. I want to emphasize - anyone can participate! Our stories are powerful and she wants them told. She will add her story to the other stories out there. She would also like a .jpg file of yourself if its possible. She's also not decided on a name for the book so would love any suggestions.

Your story should be concise - about 2 paragraphs or about 500 words. You can email your submission to:

She hates to put a time limit on this endeavor but would like to get the book done by September. Right now there's no definite date by which she needs your input submitted but if you really plan to do this, do it very soon. My friend Pris will be monitoring this activity and report back to me if there's more info - particularly a submission deadline.

Thanks and I hope our Charlotte group and others will be well represented in her book. To have this done by September I'm wondering if it will be a softcover book or pamphlet - more like a magazine? But Pris will update me anytime there's more info. With May 12th just around the corner, I think this is a wonderful project.

If you are currently suffering a relapse or want to know what to do when experiencing a flare, refer to Dr. Lapp's prescribed techniques described on his web site at http://www.drlapp.net/resources.htm .

Functional impairment in chronic fatigue syndrome, fibromyalgia, and multiple chemical sensitivity - Source: Canadian Family Physician, Feb 2010

I usually provide just a link but in this case I thought it important to include the entire article:

Objective: To characterize patients diagnosed with multiple chemical sensitivity (MCS), chronic fatigue syndrome (CFS), or fibromyalgia (FM), to compare their level of function with Canadian population average values, and to assess factors associated with function.

Design: Chart review and abstraction of clinical information.

Setting: The Environmental Health Clinic (EHC) at Women's College Hospital in Toronto, Ont, which is a provincial referral centre for patients with illnesses with suspected environmental links, especially MCS, CFS, and FM.

Participants: A total of 128 consecutive patients diagnosed with 1 or more of MCS, CFS, or FM, seen between January 2005 and March 2006 at the EHC.

Main Outcome Measures: Demographic and socioeconomic characteristics, comorbid diagnoses, duration of illness, health services usage, life stresses, helpful therapeutic strategies, and functional impairment measured by the Short Form-36, compared with Canadian population average values. Factors significantly associated with function in bivariate analyses were included in multiple linear and logistic regression models.

Results: The patient population was predominantly female (86.7%), with a mean age of 44.6 years. Seventy-eight patients had discrete diagnoses of 1 of MCS, CFS, or FM, while the remainder had 2 or 3 overlapping diagnoses. Most (68.8%) had stopped work, and on average this had occurred 3 years after symptom onset.

On every Short Form-36 subscale, patients had markedly lower functional scores than population average values, more so when they had 2 or 3 of these diagnoses.

Having FM, younger age at onset, and lower socioeconomic status were most consistently associated with poor function.

Conclusion: Patients seen at the EHC demonstrated marked functional impairment, consistent with their reported difficulties working and caring for their homes and families during what should be their peak productive years. Early comprehensive assessment, medical management, and social and financial support might avoid the deterioration of function associated with prolonged illness. Education and information resources are required for health care professionals and the public, along with further etiologic and prognostic research.

Source: Canadian Family Physician, Feb 2010;56(2):e57-65. PMID: 20154232, by Lavergne MR, Cole DC, Kerr K, Marshall LM. Women's College Hospital, Family and Community Medicine, Toronto, Ontario, Canada. [E-mail: k.kerr@utoronto.ca]

CROI: Secrets of Novel Retrovirus Unfolding

By Crystal Phend, Senior Staff Writer, MedPage Today
Published: February 21, 2010
Reviewed by Barry S. Zingman, MD; Professor of Clinical Medicine, Albert Einstein College of Medicine, Bronx, NY and
Dorothy Caputo, MA, RN, BC-ADM, CDE, Nurse Planner

SAN FRANCISCO -- The mystery surrounding a retrovirus recently implicated in prostate cancer and possibly chronic fatigue syndrome is beginning to yield clues.

The virus, known as XMRV, has been confirmed to replicate primarily in reproductive organs and lymphoid tissue, according to a primate study reported at the Conference on Retroviruses and Opportunistic Infections.

Study Shows Opioids Effective for Neuropathic Pain Karen Lee Richards

Until now, opioids have not been considered to be very effective for neuropathic (nerve) pain. They have been a second- or third-line treatment option at best. However, a new study has shown that in many cases opioids can be effective in relieving neuropathic pain.

A research report presented at the American Academy of Pain Medicine's annual meeting indicated that patients with neuropathic cancer pain had obtained consistent, long-term pain control with extended-release oxymorphone. To read more:

For those of you who may have followed this tragic story, Ryan Baldwin is now home. Read the update:

Re: Bringing Ryan Home, Article from P.A.N.D.O.R.A and Pediatric Chronic Fatigue Syndrome

Our Board consists of Dr. Lapp, Kebbie Cannon, Leslie Vann, Maggie Reed and myself.