Confessions from the Fibro Fog: Lyme disease

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: 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.

Wednesday, July 4, 2012

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