Laughing and crying, you know it's the same release. Joni Mitchell

Laughing and crying, you know it's the same release. Joni Mitchell

Wednesday, June 5, 2013

Fatigue is not a disease

Please sign a petition to pressure the Department of Health and Human Services to take Chronic Fatigue Syndrome/myalgic encephalomyelitis seriously. I was signature #241 and we need 25,000 signatures to get this important issue to the White House.

According to the petition sponsors:

"Of all the issues that we face today, the one issue which has created the most problems is the use of multiple, diverse and overly broad “CFS”definitions. This single issue has severely affected research, drug development and clinical care and has misled the medical community on the very nature of this devastating disease, causing many doctors to dismiss their patients.
Until we stop this confusion over the nature of the disease, patients will continue to pay a terrible price."
I am forwarding the message I received:

On May 12th, 9 ME patient organizations and 26 advocates sent a letter to the Department of Health and Human Services calling on them to start using the Canadian Consensus Criteria for ME, which requires the hallmark symptom of post-exertional malaise. If you do one charitable thing this month, please sign the petition and spread the word to everyone you know. We need 25,000 signatures to get this issue to the White House.

Author Erica Verrillo is helping to drive this petition and will post an article on ProHealth and will promote it on her mailing list and other sites. Thank you to Donna Pearson for all her help in getting this going and thanks to you in advance for posting the petition wherever you can.

Friday, May 10, 2013



There are more than 50 Fibromyalgia Awareness Day Events occurring nationally and internationally!  We appreciate your commitment to raising your voices to educate people about fibromyalgia.  Even if you reach out to just one person who doesn't know about or understand the effects of fibromyalgia, it is one more person who may support future efforts to CARE and Make Fibromyalgia Visible.

To locate and participate in an event close to you, or to find one online, please visit the National Fibromyalgia & Chronic Pain Association's website by clicking the link below and following these quick, easy steps to locate Fibromyalgia Awareness Around the World!

  • Click here:  CARE & Make Fibromyalgia Visible - 2013
  • Once you are on the home page, scroll down to discover a variety of events.
  • You will find the following links to help you locate an event that is just right for you:
  1. National Fibromyalgia & Chronic Pain Association's events
  2. Events state by state in the United States
  3. International Events by Country
We look forward to hearing from each of you and regarding the success of your Awareness Day Event or how you participated in an event - either online or at a local venue.  Please send us your pics to share with others online.  (

Sunday, April 7, 2013

Free book on CFS treatment

It's been a while since my last post, but this offer was too good not to pass it on - a free e-book on the treatment of CFS available on Saturday, April 20 and Sunday, April 21, 2013. I have not read the book, so I can't comment on the content, but the price is right!

Here is the note from the author, Erica Verrillo, who is also the author of a children's book series, the Phoenix Rising Trilogy:

I am giving away free copies of the CFS Treatment Guide again. Please help me spread the word by posting this announcement on Facebook, on your blog, on forums, or wherever you can. So far, I've given away over 9,000 copies!

Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition will be free on Saturday, April 20th and Sunday, April 21st on The book includes over 100 effective treatments, spanning the full range of pharmaceutical and complementary modalities, an in-depth discussion of symptoms with cross-referencing to appropriate treatments, the latest research into the causes and mechanisms of the illness, doctors' protocols, coping techniques, special sections for managing chemical sensitivities, dietary restrictions and the special needs of children, as well as extensive appendices covering resources, locations of doctors and clinics, local, national and international organizations, and internet ordering information. The book also features over 2600 useful links to further reading, research articles, and patient reviews.

Dr. Charles Lapp, director of the Hunter-Hopkins Center, calls this the book “every patient should have.”

A Kindle is not needed to read this book. Amazon provides free apps that allow eBooks to be read on computers, iPads, phones and other devices.

For more information go to:

Monday, December 3, 2012

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: 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): or

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.

Monday, September 17, 2012

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: or

Monday, September 10, 2012

Neuropathic Pain Study for FM

English: This is the main entrance of MGH in B...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
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  –
Phone  – 617-726-9391

For more information see:

clinical trial

Thursday, July 19, 2012

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, 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

Enhanced by Zemanta