Videos of CFSAC Spring 2013 Meetings

CFSAC Spring 2013 Meetings

12 videos, 12 hours by U.S. Dept. of Health and Human Services
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) discusses the current issues of chronic fatigue syndrome.

Day 1

Welcome & Call to Order - Day 1 (CFSAC Spring 2013)
Duration: 1:23:00
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting, Day 1, May 22, 2013, 9:00 - 10:30 AM. Call to Order CFSAC Chair, Gailen Marshall, Jr., M.D., Ph.D. Welcome Statement from the Principal Deputy Assistant Secretary for Health…

Public Comment on Day 1 (CFSAC Spring 2013)
Duration: 59:38
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting, Day 1, May 22, 2013, 11:45 AM - 1:00 PM. Public Comment.…[Note: time is given incorrectly. It should be 10:45 - 11:45 a.m.]
Approve Prioritized Recommendations List - Day 1 (CFSAC Spring 2013)
Duration: 26:05
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting Day 1, May 22, 2013, 1:00 - 1:30 PM. Approve Prioritized Recommendations List and Accept Proposed List of ME/CFS Orgs Websites, Committee Members. …
Determination of Medicare Coverage of Test and Treatments - Day 1 (CFSAC Spring 2013)
Duration: 1:03:30
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting Day 1, May 22, 2013, 1:30 - 2:30 PM. CMS Determination of Medicare Coverage of Test and Treatments, Dr. Louis B. Jacques, M.D…
Public Question & Answer on Day 1 (CFSAC Spring 2013)
Duration: 24:52
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting Day 1, May 22, 2013,
2:45 - 3:15 PM. Public Q&A.…
Committee Discussion and Plans for Day 2 (CFSAC Spring 2013)
Duration: 1:48:34
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting Day 1, May 22, 2013,
3:15 -- 5 PM. Committee Discussion and Plans for Day 2, Committee Members…

Day 2

Opening Remarks on Day 2 (CFSAC Spring 2013)
Duration: 1:12:37
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting Day 2, May 23, 2013,
9:00 - 10:15 AM. Opening Remarks CFSAC Chair Gailen Marshall, Jr., M.D., Ph.D. Agency Updates: AHRQ, NIH, FDA, Ex …
Health Insurance Marketplace - Day 2 (CFSAC Spring 2013)
Duration: 46:01
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting Day 2, May 23 2013,
10:15 - 11:00 AM. Health Insurance Marketplace, Anand Parekh, M.D., M.P.H.…

Public Comment on Day 2 (CFSAC Spring 2013)
Duration: 1:06:06
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting Day 2, May 23, 2013,
11:15 AM - 12:15 PM. Public Comment …

Public Question and Answer on Day 2 (CFSAC Spring 2013)
Duration: 1:09:57  
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting Day 2, May 23, 2013,
1:30 - 3:00 PM. How To Get More Clinicians Involved in ME/CFS? Susan M. Levine, M.D., and Lisa W. Corbin, M.D., FACP. P…
Committee Discussion on Day 2 (CFSAC Spring 2013)
Duration: 32:45  
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting Day 2, May 23, 2013,
3:00 - 3:30 PM. Committee Discussion…
Committee Discussion (Part #2) on Day 2 (CFSAC Spring 2013)
Duration: 1:23:15
Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting Day 2, May 23, 2013,
3:30 - 5:00 PM Committee Discussion…

Gardening for Health and Fun

by Rita Sanderson

butterfly on flower for article compressed"Happiness is a butterfly, which, when pursued, is always just beyond your grasp, but which, if you will sit down quietly, may alight upon you" (Nathaniel Hawthorne).

Our family always set up traditional gardens in the yards of the many places where we've lived over the years. The warmer climate in Maryland led to a hearty harvest of gigantic cucumbers, tomatoes, squash, melons, and much more. Back then, our home garden was used to teach our children how to grow some of their food and help to raise their awareness of and respect for nature. With giggles and delight, they marveled at the delicacies that emerged from the seedlings they had planted just a few months earlier.

Experiencing nature first-hand tends to leave most people, whether they are children or adults, well or ill, in awe of its majesty and power. Several magical moments I've enjoyed include a surprise visit by a Praying Mantis, which at first appeared to be so large and intimidating. Curiosity made me want to find out more about this grand critter, and I was surprised to discover it was considered to be one of the most beneficial insects in one's garden because of its hearty appetite for many nuisance bugs. Another insect that I never associated as a "top predator" in the insect world, was the enchanting dragonfly that was balancing itself on our clothesline, with its translucent wings glittering in the sun. I had not realized that the black-eyed Susan's and Joe-Pye weed and the rocks in my garden actually helped to attract dragonflies nor that their favorite fare was mosquitoes—I'd consider this a "win-win" situation.

Over time, the bees, butterflies, and birds unknowingly became the subjects of numerous photos and a line of greeting cards I had designed. A picture of that dragonfly ended up being selected for publication in the Parade Magazine several years ago—who would have thought that dabbling in the dirt would give rise to another enjoyable hobby. Now I select certain plants for what they might potentially lure into the garden and provide many good "photo ops." Until my health problems left me more confined to my home, I seriously doubt that I would have noticed any of these wonders. A quote by a remarkable American naturalist and essayist sums up what I've gained time spent in the garden, "I go to nature to be soothed and healed, and to have my senses put in tune once more" (John Burroughs).

What motivates folks to consider gardening can be varied and as unique as they are. Some common reasons and benefits include:

- Growing fruits or vegetables that are free of chemicals or additives
- Having fresh and fragrant herbs, just a snip away
- Canning, freezing or drying produce/herbs for use throughout the year
- Going primarily with flowers can create a colorful, fragrant and relaxing setting
- Flowering plants can be magnets for butterflies or hummingbirds
- Getting fresh air, sunshine, and a little exercise
- Sharing a common interest (and plants) with neighbors and friends
- Using gardening as a creative outlet
- Adding "curb appeal" /increasing property value
- Getting ideas or tips at garden shows or nurseries
- Giving yourself something new to learn about /get lost in
- Sharing your knowledge and skills with others
- Taking pictures of plants and wildlife
- Making memories with grandchildren
- Feeling a sense of accomplishment
- Feeling one with nature/ spiritual awakening

Some general things to take into account before heading out to your local garden center:

- Consider your overall health and options/space available to determine what type of garden to plan for
- Limit size of the garden/flower beds (especially in ground) due to upkeep
- Pick the right plants for the sun exposure available (sunny, partial shade, shade)
- Choose plants that fit within your available space, do not overcrowd
- Find out what kind of soil you have, get the right fertilizer/soil enhancer or potting mix specifically formulated for containers
- Look for a nursery /garden center with knowledgeable staff for guidance
- Consider buying nursery containers (black recycled plastic pots) from a greenhouse or garden center, a much more economical option when setting   up a container garden
- Water each plant as recommended and group "like" plants together
- Choose the right tools for the job: lightweight tools with padded handles (or handles covered/taped with pieces of pipe insulation foam) can help to     reduce hand strain, a small cart or tote (with coasters) to transport tools, a kneeler and sturdy bench/chair
- Keep a close eye on how your plants are doing (is there good growth, changes in the leaves, any bugs, other pests) and take care of problems           promptly
- Be extra careful with pets or small children—check which plants or parts of plants are poisonous

It's really not as complicated as it may appear. Once the basics are in order, all one needs to do is provide tender loving care and let nature do the rest. Nature is not predictable nor can it be controlled. While plants are grown for competition and prizes, most of us turn to gardening as a healthy and enjoyable diversion from our health problems. It should not cause angst or stress. "Adopt the pace of nature: her secret is patience" (Ralph Waldo Emerson).

Another garden enthusiast, Susan Murray shares her joy of gardening in an article, "Soil is Good for the Soul," featured in the Spring 2013 edition of Disability Issues. Ms. Murray, a Certified Master Gardner, confesses how excited she still becomes, after a long winter in the Northeast, when she can go outside, get her hands in the dirt and feel her heart communing with nature. While she praises the physical and emotional benefits of gardening, over the years, she admits it has started to cause more pain and discomfort. Though she still regards herself as "able-bodied", she has concerns about age-related impairments and disabilities that impact people's ability to continue or take up gardening.

Ms. Murray decided to explore if there was anything available that could help folks with accessibility and functionality. She met a relatively young man who had sustained spinal cord injury and relied on a wheelchair to get around. He had always been an avid gardener and was able to continue doing so after a friend had built him a box on stilts. The box served as a raised garden bed that he could reach more easily, while seated, and plant whatever he wanted to. After research of his own, necessity and ingenuity led to his creation of a company, Accessible Gardens, that specializes in the construction of modular bed units and trellis options. The garden beds can be elevated to table height and adjusted for use with wheelchairs and walkers. This system can be assembled in multiple configurations to meet the needs of user(s) and the site.

So, one never knows what else they might discover or invent as a result of gardening. Again, this article focuses on it as healthy pastime, but it may lead to business opportunities for some. People often look for new and clever ways in showcasing their plants. They may design garden ornaments or wind spinners or paint scenes from their gardens. Gardening has become a very popular hobby, but understandably it is not for everyone. Sometimes it is used therapeutically (known as horticultural therapy) at rehabilitation facilities and assisted living residences, as part of the patients' treatment program.

The most important thing is to get started. Many local experts recommend buying container seedlings which have a better chance in reaching maturity and being productive since our growing season is rather short in New England. Starting plants from seeds indoors, can be very gratifying, but that requires planning and preparation. It's not too late to start a garden, even in early June. For that matter, you might find seedlings that have grown into pretty good-sized plants which home improvement stores and garden centers often discount towards the end of spring. If it would be easier for you to garden while seated, ask someone to place your potted plants on sturdy tables. A local handyman could construct several box planters or a raised garden bed. But if you are a novice, it might be wise to start out with couple of pots on the balcony, deck or patio and just see how things go. Think about the task at hand, gather your tools and whatever else you may need in a tote or cart, keep work area/path clear of tripping hazards, and most of all, contain your plants, but not your enthusiasm.

For more information

Read the entire article, "Soil is Good for the Soul" (Disability Issues, Vol. 33, No.2 published by Spaulding Hospital in Cambridge, MA ) written by Susan Murray who is on the Editorial Board of Disability Issues, a retired health care consultant and a Certified Master Gardener.

The article is on the website for Accessible Gardens.


Summary of 8th Invest in ME Intl. ME Conf. 2013

Mainstreaming ME Research: The 8th Invest in ME International ME Conference 2013 (Phoenix Rising) This is an excellent summary by Mark Berry on the 8th Invest in ME International ME Conference (IIMEC8) held May 31, 2013 in London, UK. The conference titled, "Mainstreaming ME Research: Infections, Immunity and Myalgic Encephalomyelitis," featured clinical and research updates as well as frank discussion by more than a dozen international physicians and scientists about the need for new diagnostics and biomarkers. 

Conference speakers represented Australia, Germany, Norway, the United Kingdom and four researchers from the United States: Drs. Daniel Peterson with the Simmaron Research Foundation in Incline Village, NV; Andreas Kogelnik with the Open Medicine Institute in Mountain View, CA; Mady Hornig with the Center for Infection and Immunity (CII) at the Columbia University Mailman School of Public Health, New York, NY and Rakib Rayhan with the Chronic Pain and Fatigue Research Center, Georgetown University Medical Center in Washington, D.C.

Conference Highlights (taken directly from the report) describe key messages discussed by each speaker:

  • Dr Ian Gibson announces new PhD studentship in Norwich looking at gut bacteria. "Things are beginning to pop, across the nation and across the world...There's a new spirit loose, I think, in the ME field".
  • Dr Peterson keynote: "It's time to stop querying patients and begin developing new diagnostics". We need both clear endpoints and clear populations for successful research.
  • Dr Kogelnik: Medicine is at a crossroads, and ME will be "key disease" in coming "health/disease revolution": technology enables the 'Quantified Self' and personalized medicine. Govt agencies "not the enemy", it's "their ignorance and our lack of data" —our job is to bring them the data so it can't be ignored.
  • Dr Rakib Rayhan: In Gulf War Illness, Baraniuk et al believe their brain scans after exercise challenge produced a "quite robust biomarker", and they want to extend to ME/CFS. New study out in a couple of weeks finds 2 subgroups for pain and fatigue post-exercise.
  • Professor Greg Towers puts XMRV saga to bed: valuable lessons learned mean this kind of situation should never happen again.
  • Professor Mady Hornig: Final analysis of cerebrospinal fluid now underway; possible finding of 'different patterns of cytokine associative networks' and 'potential novel candidate' in CSF still needs to be confirmed.
  • Dr Clare Gerada steps into the lions' den and "tells it straight"—attempts to "build a bridge between the largest Royal College and a very important problem"—hopes to "be better able to work with you to improve the care you receive from my profession".
  • Dr Donald Staines stands in for Professor Sonya Marshall-Gradisnik. Publications expected in next weeks and months; still finding "sustained, demonstrable, significant impairment in NK cell function", "highly confident" of up-regulation of T-reg cells; "clear derangement in the immune's irrefutable", and "anyone who suggests that this might be fixed by exercise therapy should probably be de-registered I think".
  • Dr Amolak Bansal senses a "paradigm shift" towards model of subtle form of autoimmunity in ME; suspects patients' B cells are failing to mature properly and producing low avidity antibodies; lasting response to B-cell depletion therapy may require clearing the viruses responsible in addition to 'rebooting' the B cells.
  • Norwegian ME Association presents awards to Invest in ME founders Richard and Pia Simpson, and to Professor Malcolm Hooper for "untiring and exceptional contribution to the ME cause". Hooper accepts with his shortest ever speech.
  • Carmen Scheibenbogen and her team at Charite are finding similar immune dysfunction and share many of the same theories as Bansal, Fluge and Mella. They're trying to develop a diagnostic test, investigating EBV infections in depth, and seeing 3 immune subtypes of CFS. Hoping for solid data in about 6 months.
  • Professor Mella and Dr Fluge are closing in on publication of their follow-up study on Rituximab therapy.

The above excerpt is posted with permission from Mark Berry, Board Member and writer for Phoenix Rising.

Meet the Author, Erica Verrillo, an Inspiring and Engaging Event


ericaverrillorogerkingphotowebThe Massachusetts CFIDS/ME & FM Association enthusiastically welcomed Erica Verrillo, author of Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition (Amazon Digital Services, Inc, 2012) on Saturday, May 18, 2013, in Sturbridge, MA. Guests came from far corners of the state, as well as some nearby states, to meet and hear Ms. Verrillo whose book is praised by patients and many specialists as the "go-to-reference" for CFS. The author noted she used the name Chronic Fatigue Syndrome (CFS) in this second edition because CFS is currently the most widely utilized term by clinicians and researchers in the United States. She also clarified the information in the book reflects many years of extensive research and not personal preferences or opinions.

Jane Shiyah, a parent of an adult child affected by CFS, provided a most gracious introduction for Erica Verrillo, describing her as "complex, complicated and multifaceted" as the illness itself. She shared some of Ms. Verrillo's fascinating and wide-ranging accomplishments such as being a classical musician, traveling and learning first-hand about the culture and political issues in Latin America as a hitchhiker, becoming a Mayan linguist, founding an aid organization for Guatemalan refugees, and having a long history as a political activist. Verrillo has also written many short stories and a series of middle-reader fantasies—a trilogy about Elissa, a teen who lives in a magical place and can speak to the animals. These stories were invented by Ms. Verrillo for her daughter who also has CFS.

Erica Verrillo explained how this book came about (referring to the first edition published in 1998 by St. Martin's Press). Although she had fallen ill in 1987, that problem was never diagnosed. In 1992, while working towards her doctorate in Speech Communication at the University of Texas in Austin, Ms. Verrillo became sick again upon her return from field work in Guatemala. This time she was extremely ill, was forced to abandon her studies, had to be hospitalized, and was confined to her bed for two years. Her daughter also become very ill during the same time. They both were diagnosed with CFS. (Ms. Verrillo was diagnosed by Dr. Paul Cheney.)

Like most patients, Ms. Verrillo was shocked to discover how little doctors knew about CFS—having seen her two year struggle be described as "spells" in her medical records. She was also surprised to find nothing published on treatments for CFS. Having studied and worked in a variety of fields, Verillo proceeded to do her own research. She became acquainted with Lauren Gellman, a vice-president of a Fortune 500 company prior to developing CFS, who was very ill but shared a mutual concern about this lack of information. Due to the severity of their illness and their personal limits, they communicated with each other through an exchange of cassette tapes that they mailed back and forth. After two years of hard work and true grit, their book was completed and ready for publication. The authors actually thought about what they would do if a cure was found in the interim; they would burn the manuscript! However, their 127,000 word text did not go to waste and served as the most comprehensive treatment guide available to patients and healthcare professionals for many years.

Erica Verrillo read part of the Introduction which describes the premise of the book, "The absence of a cure does not in any way imply there is no treatment for CFIDS." Throughout the ages, many different methods and remedies have been used to care for people—these may provide symptom relief, repair damage, and/or help to restore strength. The purpose of treatment was conveyed in this analogy, "If CFIDS is like falling into a hole, as some patients have observed, recovery is like climbing out of the hole, step by step, rung by rung." Knowledge about effective treatments can provide patients with the rungs leading to recovery. Recovery can vary greatly between patients, can being substantial or partial, but Verrillo thinks recovery is possible at any point based on cases reviewed. [Note: CFIDS is the term used in the first edition.]

The author and the patient community share many frustrations, particularly how the medical community cannot seem to see the forest for the trees. Post-exertional malaise (PEM) is now recognized as the most distinct feature of CFS that is usually not found in other illnesses. PEM is when effort expended on physical or mental activity causes an exacerbation of all symptoms in a person with CFS. The sicker the person is, the less effort it will take to produce PEM. Doctors very rarely, if ever, ask patients whether they have this significant symptom. Doctors tend not to look at the body as an "entire system." Ms. Verrillo stated that the truth is that every illness is a multi-system disorder because the immune, endocrine and nervous system often share the same receptors. She provided many other examples of things that go unnoticed in CFS.

With that said, new research on the causes and mechanisms in CFS and treatment protocols have emerged over the last 15 years warranting a complete update of the first edition of the treatment guide. Ms. Verrillo had to review all previously and newly published research and to decide which material to keep or omit—this was an arduous task, but someone had to do it. The second edition has more than twice the data of the first one, totaling 277,000 words or 817 pages. This shows the depth and scope of Verrillo's research and work.

Erica Verrillo explained that by self-publishing the second edition, it allowed her to give copies of the book away. So far, more than 15,000 copies have been downloaded for free. Ms. Verrillo described this book as a labor of love, created solely to educate patients and the medical community. The information can be downloaded directly to the reader's computer without the need to own a Kindle or Nook, from Amazon for only $2.99. The E-format allowed Verrillo to incorporate links to numerous resources; so everything a patient or a doctor needs is just a click away. This book functions as an encyclopedia on CFS including natural and homeopathic treatments.

We would like to extend our sincere gratitude to Erica Verrillo for sharing her time, wisdom, and valuable contribution with our guests. To learn more about Ms. Verrillo, visit her website.