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May 2005

Vol. II, Issue #18

CFS Blue Ribbon Bergen CFS Support Group Newsletter

Meeting Report

The meeting was held on Sunday May 15^th. Our attendees included family members who came to learn about CFS and how it affects our family and social relationships. We commend them for showing support for their loved ones. Our speaker Lois Weissman, NP-C, RN,MS is a therapist who specializes in helping people with chronic disease. She addressed the need for understanding and acceptance among family and friends. Lois Weissman is available for office hours at UMDNJ. Parking is easy and safe and the building complex is just off Route 280. She hopes to open an office in Bergen County in the near future. You can call her for a phone consultation.

Lois Weissman, NP-C, RN, MS

90 Bergen Street DOC 8100

Newark, NJ 07103

973-972-2550

Judy Machacek provided information about massage and Tai Chi Chih availability.

Academy of Massage Therapy 201-568-9873

401 South Van Brunt Street, Suite 204

Englewood, NJ 07631

Student massages available for $30 - cash only - on Thursday and Friday afternoons and Saturday mornings.

You must call in advance for an appointment.

Tai Chi Chih Practice outdoors at Leuning Park in Ridgewood, NJ

hosted by Val Drucker 201-444-8641

Sunday mornings at 9:30 AM in June: 6/5, 6/12, 6/19, 6/26

Free and open to anyone.

CFS Awareness Day

Million Letter Campaign – If you participated, please let us know how many letters you sent. We are trying to get an idea of the extent of our involvement. If you have email please send the number to me pat@larosas.net. If you are a US postal recipient, please call Anne with your name and the number of letters you sent. You can leave a message. Anne can be reached at 201-244-5188. Thanks to all of you who participated.

This is an update from Patti Caprio, the organizer of the Million Letter Campaign. http://www.fms-help.com/letter.htm .

UPDATE ON THE MILLION LETTER CAMPAIGN

On May 1, 2005, FMS/CFIDS/ME/MCS sufferers from all over the world sent letters to media and government addresses listed on this site in an effort to increase awareness of this illness in time for International Fibromyalgia Awareness Day on May 12. Below are some TANGIBLE results from our efforts.....

1. Pattie Caprio, MLC Founder, stated: "I received two calls today (May 9, 2005) from the media. One was from Liz Frillici, Senior Supervising Producer for the Montel Williams show, and the other one was from FOX TV. Ms. Frillici was not too happy about the massive amounts of mail and asked why we didn’t just send one letter to her. I explained that we tried that in the past and we never received an answer. She informed me that she would have to discuss this with Montel to see if he would be willing to help our cause. She agreed that Fibromyalgia is debilitating and is a 'sister' disease to MS. However she could not tell me whether or not he would put us on his show. I asked her how many letters were received and she said 'carts'. She told me to tell every one that the campaign was 'extremely successful' and that I deserved a phone call. FOX TV is forwarding our mail to the National FOX station. Lisa Mancinni, from FOX TV, informed me she just did a story on FMS and can not do another one, but she was sympathetic to our plea for awareness."

2. From Canada: Anne Trautman, one of our Million Letter Campaign supporters, just notified us that the officials from Canada received quite a few letters from the MLC. They were very pleased. Canada Pensions Plan, Edmonton, received all the mail!

3. An MLC participant reported: "I wrote my letter to everyone that was suggested on the website, and more! This past Saturday, I received a 'Proclamation' from our Governor Ernie Fletcher from the Commonwealth of Kentucky proclaiming 'May 12, 2005 FIBROMYALGIA AWARENESS DAY in Kentucky'!!!!!!! The proclamation is VERY professional, signed and dated by our governor. My sister (and I) was/were *VERY* excited. Thank GOD! And thank you all [in KY] for your efforts, too!"

4. An article appeared in the Town Times, Middlefield, Connecticut on Fibromyalgia Awareness Day, May 12, 2005 about fibromyalgia and one of our Million Letter Campaign workers, Shi Qkalokqua! www.towntimes.com/articles/2005/05/12/news/local_news/news21.txt

5. Another report from Canada: "This is our local TV channel www.cfcn.ca - Click on Karen Owens video." This segment aired on May 12!

6. From Pattie Caprio (May 17, 2005) - ATTORNEY MICHAEL J. HALLER, JR., who composed and mailed a powerful letter for the Million Letter Campaign top five addresses, phoned this morning. Attorney Haller has agreed to have copies of his letters sent to all the Senators who work on SSD laws along with our MLC letters. He informed me that he was just in Washington last week discussing these very issues with one of the Senators. He is willing to help us in any way he can with MLC. Anyone who lives in Omaha, Nebraska can contact him at 402-544-4773 for your attorney for your SSD case. He works with FMS/CFS/MCS/ME cases all the time. Below is Mr. Haller's letter to our First Lady, Mrs. Laura Bush (used by permission)--

7. More good news! This is from a Million Letter Campaign worker: On May 26, 2005, Mayor John Peyton of Jacksonville, Florida is signing a proclamation about Fibromyalgia Awareness Day.

If you participated in the Million Letter Campaign and receive a RESPONSE from ANY of the addresses below, PLEASE CONTACT MLC FOUNDER, PATTIE CAPRIO, AT ivorycgd@noln.com IMMEDIATELY! They will be reported here on this website.

President & CEO of The CFIDS Association of America, Kim McCleary, reports that the May 12th Virtual Lobby Day resulted in 2,516 messages being sent from the Grassroots Action Center to lawmakers and media professionals. In addition, messages were delivered in person by 58 CFIDS advocates who conducted nearly 80 meetings on Capitol Hill. (http://chronicfatigue.about.com/b/a/171060.htm?nl=1). [This is in addition to all of the letters sent as a part of the Million Letter Campaign.]

In the June issue of Psychology Today, which is on newsstands now, there’s an article entitled “Is It All in My Head?” It reinforces the idea that CFS, or CFIDS, is caused by stress, the mind, or a patient’s illness belief system. All these concepts are integrated into the article. For more information please see the CFIDS site @ http://capwiz.com/cfids/issues/alert/?alertid=7635331&type=CU The CFIDS organization is asking that we respond to the article. At this website, you will be able to send a comment online. The magazine should be available in most libraries.

[I read the Psychology Today article prior to the CFIDS outcry and was very distressed by the image and explanations presented by the author. I can only imagine how upset those who were interviewed must be. They have worked so hard to dispel the notion that “it is all in your head”. Pat LaRosa, editor]

Over the last couple of years, this support group has offered a variety of alternative methods of possible symptom control. The following article addresses another option that may be useful for some of you. TENS is a prescription item and is covered by most medical plans. Some will pay for it while others will rent it for the patient. Most units are small and portable and can be concealed beneath clothing.

Transcutaneous electrical nerve stimulation (TENS) is a drug-free method of pain relief that has been used to treat a wide variety of muscle and joint problems, as well as many other painful conditions. TENS uses electrical impulses to stimulate the nerve endings at or near the site of pain, diminishing the pain and replacing it with a tingling or massagelike sensation.

TENS can be used in a health-care setting, but most often the patient uses it at home.

Researchers still are not certain exactly how TENS works. The two explanations suggested most often are that electrical stimulation of the nerves blocks the pain sensation and that TENS triggers the release of the body's natural painkillers, called endorphins.

A TENS device consists of an adjustable power unit and electrodes that attach to the power unit via wires.

Before beginning treatment, the patient must put the electrodes in place — usually on top of or next to the painful area. Patients can experiment with different locations for the electrodes to see what provides the best pain relief. In some cases, it may be more effective to position the electrodes on top of a related nerve or a site that is considered to be a trigger point or acupuncture point for the painful area.

TENS has been used in patients with muscular pain, osteoarthritis, rheumatoid arthritis, sciatica, pain after surgery and other conditions.

Studies have shown varying results as to how well TENS works, what types of pain it can best relieve and how long the relief lasts. Many people have found TENS helpful, however, and many doctors recommend it as part of an overall pain-management program.

The next scheduled meeting will be on Sunday June 12^th. Please note that this is the SECOND Sunday of the month – so that we do not interfere with Father’s Day festivities. We plan to show a portion of the spring conference at that meeting. This will be the final meeting of the season.