Vote now to help those helping those with ME, FM and Lyme Disease!

Starting Dec. 3 through Dec. 12, your vote in the Aviva Community Fund contest can send much needed funding to a brand new Canadian program, BC Women's Complex Chronic Diseases Program (CCDP) dedicated to research and treatment for patients with chronic fatigue syndrome (ME), fibromyalgia (FM) and tick borne illnesses such as Lyme Disease.




Here is more information from Dr. Alison Bested at the BC Women's Hospital:
It’s easy – vote for us in the Aviva Community Fund!
To vote, go to: http://www.avivacommunityfund.org/ideas/acf13624. You can vote using your Facebook account, or register on the Aviva Community Fund website.

Why we need your help:
The new Complex Chronic Diseases Program (CCDP) at BC Women's is the first and only program of its kind in BC. It is urgently needed by the thousands of British Columbians with few options available for treatment and support. Your votes would give hope to patients, and help BC Women’s be a leader in treating, researching, and understanding complex chronic diseases. Funding would be used for biobanking equipment, which would also support other BC Women’s programs.
Please help promote the contest:
-          Forward this information;
-          Share it with your friends on social media. Join us on Twitter (@BCWomensFDN) and Facebook to get updates.
Visit our website for more, including a video from Dr. Alison Bested (Medical Director, Complex Chronic Diseases Program):
http://www.bcwomensfoundation.org/community/community-events/articles/282.php or http://bit.ly/114MyeO


Voting (for the semi-final round) begins at noon on Monday, December 3 and ends on Wednesday, Dec. 12. There are 98 entries in the semi-final round, and 30 move on to the final round. There is no voting in the final round; judges decide how much funding each entry will get. All finalists will get some funding, so the chances of winning are very good, with our help. You can vote once each day, December 3-12. Tip: leave the Aviva site “up” in a tab in your browser, so you will see it every day when you log on; also put a note in your online calendar to vote every day.
If you need help voting, this video shows you how.


Thank you for your support! Please forward this information to anyone who would be interested.

Vote in the Chase Community Giving Contest 2012!

Chase Community Giving is giving away $5 million in grants for well-deserving non-profit organizations, including CFS and FM organizations that support research, outreach and patient care. But voting ends on Sept. 19, so don't delay - vote right away!

Last year, Mass CFIDS/ME and FM won a grant for $25,000 in the 2011 contest and it is using the funds to make information on CFS available to nurses and doctors as well as update brochures and other outreach materials. This year, the association is helping other deserving non-profits which focus on CFS get enough votes to win grant money, including Phoenix Rising An NEID Corporation and Neuro Immune Disease Association. 

To vote for Phoenix Rising go to: Phoenix Rising Vote

To vote for Neuro Immune Disease Association go to: Neuro Immune Disease Assoc. Vote

For more information on voting go to: http://phoenixrising.me/archives/13417 or http://apps.facebook.com/chasecommunitygiving/

Neuropathic Pain Study for FM

English: This is the main entrance of MGH in Boston, MA. The building on the right is the White Building. The building on the left is the Lunder Building. (Photo credit: Wikipedia)I'm considering participating in a neuropathic pain study for fibromyalgia patients at Massachusetts General Hospital in Boston. I've always wanted to participate in a FM study, but most studies require patients to go off their meds, which scares me. If I'm finally feeling better ON my meds, why would I want to go OFF of them?! This involves a small skin biopsy and does not require the participants to change or drop any medications. I've contacted the study and asked for more information. I'll let you know what I find out and if I will participate.

• Laboratory Evaluation of Neuropathic Pain

Do you suffer from fibromyalgia?
We seek males and females who suffer from fibromyalgia, to participate in a neuropathic
pain study. You must have never had diabetes. This study involves one to two visits to
Massachusetts General Hospital during which you will have a glucose tolerance blood test to screen for diabetes. Recent normal results of this test can be used instead. You will also have two small punch skin biopsies removed from your lower leg under local anesthesia. Payment for participation is offered. For more information, please contact one of our study staff of The Nerve Injury Unit at 617-726-9391 or email us at NerveUnit@partners.org.

Institution  –  MGH - Massachusetts General Hospital, Boston, MA

Principal Investigator  – Anne Louise Oaklander, MD

  

Enrollment Information

For further information about enrolling a patient in this trial, contact the person below.

Name  – Kate O'Neil

Email  – kboneil@partners.org

Phone  – 617-726-9391

For more information see:

clinical trial

Art Therapy on Orr's Island

Mackerel Cove, Orr's Island

Last week I participated in a four-day plein air painting workshop on Orr's Island in Maine. It was a wonderful experience from the gentle encouragement of our instructor, Marjorie Glick (check out her amazing watercolor paintings at marjorieglick.com), to the perfect weather, to the inspiring landscapes and breathtaking seascapes, to the talented and supportive company, to the graciousness of our hosts, and to the deliciousness of the macrobiotic meals (expect for the succulent soft-shell lobsters we had one night!). I enjoy plein air painting (painting outdoors) and it was a treat to have four whole days to do what I love to do. It was food for the soul.

One afternoon, I was taking a rest on a blanket in the grass. I was close enough to the ocean to hear the sound of the surf. I felt the warmth of the sun on my skin and the gentle breeze in my hair. I heard the wind in the trees and the calls of the crows mixed with the sound of the sea. As I was drinking it all in, I remembered a quote from the Talumd (a collection of rabbi's commentaries on the Five Books of Moses):

Every blade of grass his its angel that bends over it and whispers, "Grow, grow."
                                     ~The Talmud

I realized that I was the blade of grass and the whole experience of being in that awe-inspiring place with other artistic souls creating beautiful paintings was whispering to my soul and helping me to grow.

My watercolor of Alison's Beach

I must admit that I had some concerns regarding my health and being able to fully participate in the workshop. First of all, four days of intensive creative work out in the elements could really flare up my fibromyalgia. I emailed the instructor ahead of time and explained my situation. Marjorie was very understanding and assured me that I could take things at my own pace. During the workshop, she periodically checked in on me and made sure I was getting enough rest. Second of all, I was worried that I would be too tired to drive home after four days of painting. Originally I was going to stay an extra night to rest up before the three hour drive, but my daughter unexpectedly came home from camp with mono, and I needed to get home as soon as the workshop ended. Luckily, I had another workshop student with me in the car who helped me navigate and kept me awake with lively conversation.

Most importantly, I was worried about my lack of creative drive. Since dealing with the extraordinary health issues of the last two years - which I've chronicled in this blog - my creative drive has been in deep hibernation. Characters who had once urged me to write down their stories had gone silent. The desire to draw new illustrations was non-existent. While my physical body had mostly recovered, my emotional body and spiritual body were still wounded and in need of healing. When I thought about the workshop, I was worried that I would be a feast with no appetite! I'm happy to report that I ate my fill at the feast - literally and figuratively - and felt nourished by the renewed connection with my creative side. Now that I'm back home, I don't know if the creative juices will continue to flow. In any case, I'm reassured that they are not completely dried up and that the creative well will be there to draw from when I'm ready.

Sunset over Beal's Cove, Orr's Island

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Dr. Natelson Close to CFS Cause and Diagnosis

Dr. Benjamin Natelson at the
MassCIFIDS Spring 2012 Educational Forum

Dr. Gudrun Lange, Ph.D.

In April I attended the Massachusetts CFIDS/ME & FM Association (MassCFIDS) Spring 2012 educational forum, co-sponsored by the Massachusetts Department of Health, featuring Dr. Benjamin Natelson, Director of the Pain and Fatigue Center at Beth Israel Medical Center in New York City, as the keynote speaker. In a surprise double-header, Dr. Natelson's wife, Dr. Gudrun Lange, Ph.D., a Neuropsychologist and a professor at the University of Medicine and Dentistry in New Jersey, spoke about how neuropsychological testing is used in CFS and FM patients. Dr. Natelson's lecture was titled "CFS Diagnosis: Are You a Lumper or a Splitter" and asked the question whether it is more beneficial to lump all conditions in which severe fatigue is a significant symptom - from CFS to FM to MS - into one group or to split patients into subgroups. Dr. Natleson was clearly in the "splitter's" camp. His 20 plus years of research proved that Chronic Fatigue Syndrome, Fibromyalgia and post-Lyme disease are separate medical conditions and should be treated as such. Dr. Natelson went a step further and divided CFS patients into subgroups as well, such as CFS patients with and without psychological disorders (usually depression). Dr. Natelson's approach of splitting patients into subgroups, depending on symptoms and related conditions, aligns with his theory that there are most likely several causes for CFS, and the subgroups help to narrow the pool of patients in order to determine specific causes.

HERE'S THE GOOD NEWS: By using advanced techniques in medical science, Dr. Natelson is close to finding biomarkers to diagnose CFS! His research indicates the likelihood of a brain disorder as the cause for a specific subset of CFS patients. Dr. Natelson was recently awarded a federally funded grant from NIH to continue with his findings and he is looking for patients – both with CFS and healthy controls – to participate in his study. For more information, go to www.painandfatigue.com or call (212) 844-6747.

Dr. Lange discussed the process for neuropsychological testing for CFS patients. Without the identification of the type of biomarkers that Dr. Natelson is currently researching, neuropsychological testing is presently the accepted standard to qualify for Social Security disability for CFS patients. Dr. Lange stressed that not all neuropsychologists are trained to test for the types of deficits common in CFS and that patients should seek out professionals who have experience in testing for CFS.

As a volunteer for MassCFIDS, I offered to write up both presentations for their website. I was holding off on posting this information until we got approval of the article from Dr. Natelson. The article is now up on the MassCFIDS website, so for a more detailed summary, please go to: 

Dr. Benjamin Natelson is keynote speaker at Mass CFIDS/ME & FM Association 

Dr. Gudrun Lange Reviews Neuropsychological Testing for CFS and FM 

 

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