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 .

New plans for Medicare crop up during May 2011 CFSAC discussion

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Last Updated: 13 January 2016 13 January 2016

Editorial Note: The CFSAC had made a recommendation at the previous meeting of Oct. 13-14, 2010 to adopt the term of "ME/CFS" at Dept. of Health and Human Services programs. Therefore, this article reflects the change made by the CFSAC.

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting of May 10 -11, 2011 concluded with a committee discussion of the numerous topics presented over the two-day meeting. Most of the panel felt this was one of the best meetings they could remember as well as the most-heavily attended.

Dr. Nancy Klimas reported on a proposition, described as interesting and exciting, coming from the Center for Medicare and Medicaid Services (CMS). The CMS is looking for a consortium or a group of people who are dealing with certain illnesses whose treatment protocols could serve as a model to Medicare. There is the intent to develop treatment models for specific illnesses such as ME/CFS for better and more cost-effective care under Medicare. Dr. Klimas suggested that this is a project in which members from the CFSAC research subcommittee should be involved.

To do it, they would need to form a working group and create the framework for a protocol plus use a good mechanism that would drive the data for this model. "Reverse translational research" was brought up as a very efficient mechanism for a project like this. Reverse translational research refers to capturing/feeding information from the bedside to the bench (i.e., the opposite of the flow of information in translational research). As poignant as the patients' personal stories and experiences were, another researcher pointed out that collecting and tabulating meaningful data from patients like these would carry much more weight (i.e., have more practical use) than personal testimonies.

Tools and systems that can collect data already exist, reported Dr. Klimas. One such system is called REDCap (Research Electronic Data Capture). Its advantages include that it: is free, offers a turnkey approach (i.e., meaning that is ready to use), provides quick and ready access to clinical and research networks, and has as its only expense the cost of linking. Dr. Klimas suggested they (i.e., the working group they intend to form) just get started with REDCap, work towards selecting 4 or 5 key assessment tools to measure the domains of the illness (as described in Dr. Klimas' own words), and put together a small working group to demonstrate this at the upcoming IACFS meeting in Ottawa. Briefly, REDCap is a web-based system designed for the capture of data used in research studies which also provides an interface by which to enter the data, and includes import/export features, audit trails and reporting capabilities.

Editorial Note about what is behind the CMS request: The proposition brought up by Dr. Klimas for a "model of care" is not a casual request, but instead is part of the new programs and initiatives pursued by the Medicare and Medicaid Innovation Center, in compliance with the provisions of the Affordable Care Act of 2010. The mission stated at the CMS Innovation Center is to transform Medicare, Medicaid and Children's Health Insurance Programs by exploring new ways of providing good quality health care while reducing costs. Part of this process will include testing "care" and "payment" models. This ties into some of the programs recommended by Dr. Koh earlier on Day 2. What we've heard or seen so far is actually the beginning of a long series of changes that the CMS, as one federal agency, is required to plan and put into practice over the next 5 to 8 years. The health care reform of programs that are administered by federal agencies (like the CMS) is already underway.

A patient advocate on the committee, Eileen Holderman, spoke about the many public service announcements (PSA) that are out there, for a wide range of causes, and many of these are supported by various government agencies. While listening to a radio station that broadcasts via the internet, she heard five different PSA's along these lines. For example, one of these was the recently launched PSA campaign for lupus erythematosus that was sponsored by the Office of Women's Health. Therefore, she believes that the timing is right for ME/CFS to be recognized in the same way and suggested that a PSA be seriously considered as way to get our message out.

The committee was mutually interested in seeing that the evaluation process of the most severely ill applicants for Social Security disability benefits be faster. Initially, many committee members thought the best way to accomplish this would be to recommend that Social Security Administration add ME/CFS in the Blue Book list of impairments. This way the most profoundly ill patients could meet the criteria at the third step of the evaluation process and receive their benefits sooner. However, this approach might pose a higher hurdle, cautioned Dr. Wanda Jones, and an addition to the Blue Book would also require going through a formal process complete with the rationale for such an addition. Instead, a motion was made to request that the DHHS sponsor a workshop that would review disability measures for ME/CFS, invite experts, and work towards creation of chart or cut points which could help to identify disability. The committee agreed that a virtual, half-day seminar would be an acceptable way to handle this.

Furthermore, mutual interest was shown by the committee to advance the quality of life issues for pediatric cases. They would like to pull together an expert group who could present at a national conference on education.

Dr. Wanda Jones announced that she will be replaced by Dr. Nancy Lee, as the Designated Federal Official for the CFSAC. Dr. Lee was appointed as the Deputy Assistant Secretary of Health-Women's Health, and the Director of the Office on Women's Health (OWH) in the Office of the Secretary, U.S. Department of Health and Human Services (DHHS). Prior to this recent appointment, Dr. Lee had worked for a while as a private consultant in public health and before that, spent 22 years at the Centers for Disease Control and Prevention (CDC).

Resources

The U.S. Department of Health and Human Services (DHHS) recently posted the official minutes for the CFSAC Meeting for May 10, 2011—click here to view CFSAC Day 1 Minutes.

The Center for Medicare and Medicaid Innovation has created a website detailing plans and programs, in the works, for the revision of Medicare services and payment models—read more at the CMS Innovation Center.