Confessions from the Fibro Fog: CFS treatment

Showing posts with label CFS treatment. Show all posts

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.

http://www.thepetitionsite.com/255/349/958/fatigue-is-not-a-disease/

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.

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, 2^nd Edition will be free on Saturday, April 20th and Sunday, April 21^st on Amazon.com 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: http://www.cfstreatmentguide.com

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.

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: http://phoenixrising.me/archives/13417 or http://apps.facebook.com/chasecommunitygiving/

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