2011 IACFS/ME Conference Summaries

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Last Updated: 13 January 2016 13 January 2016

This conference, sponsored by the International Association for CFS/ME, brought together over 200 clinicians and researchers from 20 countries. The conference was held September 22-25 in Ottawa, Ontario, Canada.

Dr. Charles Lapp highlights what he found to be most important and interesting of the presentations. Read Dr. Lapp's summary.

Dr. Rosamund Vallings presents a brief summary of every paper presented in the plenary sessions, with a topic index. Read Dr. Vallings' summary.

Dr. Anthony Komaroff presented highlights of the conference from his perspective.  Read a summary.

View videos of the 13 presentations given on the Patient Day.

New Chronic Fatigue Initiative Funds Scientific Research

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Last Updated: 19 March 2012 19 March 2012

The Chronic Fatigue Initiative (CFI), a privately funded 501(c)3, has enlisted leading CFS/ME researchers to participate in a new collaboration. This is the first time the "venture funding" model, which uses private money to fund research on "overlooked" diseases and has been successful with cystic fibrosis and multiple myeloma, has been applied specifically to Chronic Fatigue Syndrome. According to Scott Carlson, Executive Director of the CFI, the Hutchins Family Foundation is providing "over $10 million" to fund projects through 2014, with the possibility of more depending on the findings.

The Chronic Fatigue Initiative has planned research projects in several areas, beginning with building a "bio-bank" containing biologic samples from a "well-characterized" cohort of 200 CFS patients and 200 healthy controls, collected by leading clinicians from around the country. Dr. Nancy Klimas is in charge of cohort recruitment. These samples can then be used for study by researchers around the country.

Creation of the bio-bank and a database to link information about the patients to the samples will be followed by research to discover and study possible pathogens involved in the illness.
An Epidemiology Project will utilize epidemiologic data from the Harvard School of Public Health to study possible environmental as well as biological risk factors for CFS.

A "Mechanism of Illness" program will work with a scientific advisory board of leading researchers and clinicians to formulate hypotheses and fund new grants for research to test these hypotheses.

Participating institutions include the Center for Infection and Immunity at Columbia University, Harvard School of Public Health, Stanford Medical School, Harvard Medical School, Duke University, NewYork-Presbyterian/Columbia University Medical Center, Brigham & Women's Hospital, Massachusetts General Hospital, University of Miami and University of Utah. Lead researchers include such familiar names as Drs. Nancy Klimas, Lucinda Bateman, Dan Peterson, Jose Montoya and Ian Lipkin.

September is Pain Awareness Month

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Last Updated: 24 January 2016 24 January 2016

This page is dedicated to September, Pain Awareness Month (2011)

A public awareness campaign about chronic pain is underway on Facebook, sponsored by the American Pain Foundation (APF). The Foundation is hoping to secure a presidential proclamation designating September as “National Pain Awareness Month.” In honor of their endeavor, Massachusetts CFIDS/ ME & FM Association has created a new section in our Resource Library specifically designated for articles and information related to chronic pain.  New items on this topic will be added in the weeks and months ahead.

Here are some of the resources:

• Books about Pain and Pain Management
  Learn more about what might be causing some of your pain and therapies or techniques recommended by physicians for each type of pain
• Pharmacological therapies approved for Fibromyalgia
  Review of medications approved by Food Drug Administration (FDA) specifically for the treatment of fibromyalgia
• Comprehensive Treatment of Fibromyalgia
  Advice from an internationally known FM specialist, Robert Bennett M.D., FRCP
• Treatments: Conventional Medicine
  Summary of conventional treatments, for pain, and other symptoms plus numerous resources

If you suffer pain from fibromyalgia, request that your physician acquire a copy of recently published article in Journal of Rheumatology, July 15, 2011;38(7) which may promote more realistic expectations about FM, including pain:  A study of 1555 FM Patients provides valuable insight on longitudinal outcome of FM.

 

Lyme disease and other tick-borne illnesses on the rise!

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Last Updated: 11 November 2015 11 November 2015

A press release was issued on July 1, 2011 by Massachusetts State Senator Dan Wolf (D- Harwich), representing Cape Cod and the Islands District, regarding legislation he had co-sponsored for creation of a state commission on Lyme Disease (LD). It is important to note that State Representative David P. Linsky (D-Natick) was also highly instrumental in moving this legislation through, along with other supportive colleagues. This item was included with budget amendments proposed for 2012 and was approved under Public Health issues, as follows: "a special commission, hereafter referred to as the commission, is hereby established for the purpose of investigating and studying the incidence and impacts in the Commonwealth of Lyme disease and other tick-borne diseases, including but not limited to anaplasmosis, babesiosis, bartonellosis, and ehrlichiosis."

Senator Wolf realizes that LD is frequently misunderstood and misdiagnosed and wants to improve education as well as medical and insurance issues surrounding this illness. Representative Linsky has been outspoken about inadequate response by the state to LD. These amendments were approved by the House and Senate and sent to Governor Patrick's office for final decision.

On July 12, 2011, Jay Coburn, the Director of Community Relations and Legislative Aide for Senator Wolf, confirmed that establishment of the Commission for LD had been signed into law by Governor Patrick when he signed the Fiscal Year 2012 State Budget. As encouraging as this development is for the Commonwealth, Mr. Coburn cautiously pointed out that it will take some time for the Commission to be appointed (i.e., it will be comprised of seventeen members from a wide representation of disciplines) and to be organized with existing resources. More information will be posted about the LD Commission as it becomes available.

Given the news about an exceptionally active season for LD, but also hearing reports about a rise in two other tick-borne diseases, babesiosis and anaplasmosis, people with ME/CFS and FM are strongly urged not to ignore sudden worsening of symptoms and/or any new or persistent symptom.

The primary symptoms of the latter two infections are reported to be flu-like: fever, fatigue and achiness, but no rash (which does not always present with LD).

An infection with anaplasmosis tends to come on suddenly, within one week or so, and it can be life-threatening without immediate care and treatment, according to recent TheBostonChannel.com (WCVB-5) health reports. They also remind pet owners to check their dogs for ticks anytime they've spent time outside.

The Massachusetts CFIDS/ME & FM Association has paid close attention to problems that ME/CFS and FM patients have encountered, even before this surge of tick-borne illnesses, particularly in trying to differentiate symptoms of the various diseases and getting properly diagnosed. It is important to realize that LD and/or other tick-borne illnesses are not limited to the Cape; these pose a statewide health risk. We have five informative articles, at our website, readily available for your information.

• Differential Diagnosis of ME/CFS and Chronic Lyme Disease

• Symptoms Common to Lyme Disease and ME/CFS

• A patient shares her journey from a diagnosis of Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) to a diagnosis of Lyme disease. An interview with her Lyme disease specialist follows. Read her inspiring story, A Personal Journey into Lyme Disease.

• A lecture featuring prominent New England Lyme Disease specialist, Dr. Sam Donta: The Interface of Chronic Lyme Disease, CFS and FM.

• An excellent review of Pamela Weintraub's book discussing the Lyme Disease Epidemic, is available in this article, Diagnosis, Treatment and Cure Unknown.


Since the July 2011 developments concerning Lyme Disease, the following stories aired on Boston local news:

New legislation creating a Commission on Lyme Disease was signed into law by Governor Patrick when he approved the state’s budget for Fiscal Year 2012. The new Commission on Lyme Disease will not only  investigate and study the incidence and impact  of Lyme Disease in the Commonwealth, but will also do so for other tick-borne illness including but not limited to anaplasmosis, babesiosis, bartonellosis, and ehrlichiosus.

• Chronic Lyme disease diagnosis stirs controversy, concern (WCVB - Ch. 5, aired on Aug. 9, 2012) Lyme Disease (LD) is quite prevalent in New England and it has gain recognition as a serious and stubborn infection requiring treatment with antibiotics. However, differences of opinion continue among doctors regarding the length of time to keep a patient on antibiotics and whether residual illness will go away by itself or if it persists as chronic LD. This report features local LD specialist, Dr. Sam Donta from Falmouth, MA.
  
  
• TOUCHED BY LYME: Massachusetts activist slams back at Lyme disease Lyme Disease (LD) activist Trish McCleary describes what led her to establish a support group for this illness called, "S-L-A-M", the Sturbridge Lyme Awareness of Massachusetts. For more information about this group, meetings (which are shown under Calendar) and review of LD symptoms, go to the S-L-A-M site .