Videos of our many Massachusetts events and panels, 2017 & 2018

Boston University, College of Health and Rehabilitation Sciences: Sargent College, October 2018. Introductory remarks and panel discussion. View the video.

Cooley Dickinson Hospital, Northampton MA, May 2018. Introductory remarks and panel discussion. View the video.

Massachusetts State House, April 2018. Introductory remarks and panel discussion. View the video.

Massachusetts Department of Public Health, Boston, March 2018. Introductory remarks and panel discussion. View the video.

Regent Theatre, Arlington MA, Nov. 2017. Introductory remarks and panel discussion. View the video.

Videos of our organization’s members, ME/CFS Alert interviews with Llewellyn King

 

 bobr

Disability and Social Security with ME/CFS, Interview with Robert Robitaille | ME/CFS Alert Episode 100
Robert Robitaille discusses his personal experience fighting for disability benefits for his daughter, Robie who has ME.

 Robie

Living with ME/CFS: Robie's Story | ME/CFS Alert Episode 99, August 26, 2018
Robie talks about her daily life with ME.

 

Llewellyn King talks with members of our Association in his ME/CFS Alert video series, recorded on March 24, 2017.

NEW! In this conversation, Libby tells of her long journey from being bedridden with ME to being able to function, albeit at a reduced level from when she got ill. She says that a series of holistic therapies, including a special diet, have been working for her.

Libby's experience with ME | ME/CFS Alert Episode 90, published on June 1, 2017

 

The work of the Massachusetts CFIDS/ME & FM Association | Episode 86, published on March 29, 2017 

ME/CFS Diagnosis, children with ME, and the medical community with Alan Gurwitt, M.D. (Episode 87), published on April 12, 2017

Children with ME, Being an Advocate and Advice for Parents | ME/CFS Alert Episode 88, published on April 23, 2017

More to come...

Videos from our annual lecture series with ME/CFS leaders and researchers, 2010 to the present

View the video of David Tuller's 2018 lecture, "How Investigative Journalism Succeeds In a Hostile Medical Environment"

View the video of Linda Tannenbaum's 2017 Open Medicine Foundation lecture, "ME/CFS Research Update"

View the video of Dr. Anthony Komaroff's 2016 lecture, "ME/CFS: A Surge of Interest and Knowledge"

View the video of Dr. Khosro Farhad's 2015 lecture, "Fibromyalgia and Small Fiber Polyneuropathy"

View the video of Dr. Anthony Komaroff's 2013 lecture, "CFS Research: Recent Progress and Challenges"

View the video of Dr. Jo Solet's 2013 lecture, “The Science of Sleep”

View the video of Dr. Byron Hyde 's 2012 lecture, “Why Doctors Can’t Diagnose and What Tests Should be Considered”

View the video of Dr. David Bell's 2011 lecture, "25 Year Follow-up in Chronic Fatigue Syndrome: Rising Incapacity"

View the video of Dr. Anthony Komaroff's 2010 lecture, "The Latest Research on CFS"

A Conversation with Novelist Roger King

The Massachusetts CFIDS/ME & FM Association and the Central Massachusetts Area Support Group had the pleasure to host author Roger King for a book reading on August 4, 2012 in Sturbridge, MA. "Love and Fatigue in America" (University of Wisconsin Press, March 26, 2012) is Roger King's fifth novel, a sometimes humorous, but always inspiring narrative about living with Myalgic Encephalomyelitis (ME), otherwise known as Chronic Fatigue Immune Dysfunction Syndrome or Chronic Fatigue Syndrome (CFIDS/CFS).

Mroger king signing booksr. King displayed his humor and wit in explaining how he came to write "Love and Fatigue in America." Originally from England, he lived and worked in twenty different countries, primarily for United Nations agencies. He came to America on a teaching stint in Washington State when he soon fell ill. As a stranger in a new country, he thought it would be better to conceal his medical condition while trying to carve out a new life. This process led to new insights about CFS/ME, health and healthcare and countless stories from folks along the way, which ultimately led to this book - in fact, King felt it was unavoidable, being a novelist. He realized that creative writing could communicate with people in a way that scientific papers cannot—already, readers' reaction, primarily from patients, has been generous and sincere.

Words and pages came to life as King delivered these with the charming lilt of his English accent. He allows the reader, and in this case, the audience to share his thoughts on falling ill. Initially in denial and assuming he would get well as in so many previous instances, such as his bout with malaria, King struggled to figure out what was going on within his body. King's novel adeptly conveys how this insidious illness can and will turn people's lives around—in his case, from this once successful, international teacher and author to the average person struggling with getting around town and through everyday functions.

The book tries to cover a lot of ground in one hundred short chapters which often change from narratives to vignettes and lists-a format that King felt very much reflected the fluctuating nature of CFS. Near the beginning of the book, he explained how he went to the gym after what he thought was a bout with the flu, and how he got dizzy and struggled to say upright. In one line he read "The sitting down doesn't end the going down." Everyone could relate. He decided to just wait it out, attracting as little attention as possible. He was alone by the time he was able to pull himself up, looked around and thought "A good distance down to the carpet. The carpet wants me." Everyone in the room laughed as they could sympathize with the statement. He assumed that a good night's rest might be all he needed to feel better.

Several weeks later and no sign of improvement, he finally dragged himself to the doctor's office, whom he named "Grumpy." Knowing the English socialized health care system, King coined the term "hands in your pockets" medicine. Papers, insurance and otherwise, income and fees had not been part of a doctor's visit -there, the only thing a patient had to do was be sick. Here, he was faced with inordinate amounts of papers as well as costs. Mr. King thought the American medical system was inefficient. Grumpy actually diagnosed CFS, but King had never heard of it.

In the chapter "How to be Ill" King read "Sufferers from Chronic Fatigue Syndrome are not good at being ill. You look well, you're not dying, you're complaint is modest. You are going to be trouble for a long time." Again, knowing laughter from the audience.

He adroitly takes the reader through the complications of decision making using the measure of energy expenditure as the currency. Does he get up and go to the bathroom, take a shower or eat? How do you manage the energy needed to handle a relationship? He navigates his emotions and lets the reader into his thought process.

There was a question and answer period and it was interesting how some of the questions regarding instability of the illness, planning outings or reaction to cancelled commitments were shared by all.

He was asked what it was like the first year when he was a visiting professor in WA and he got ill. He answered "It was a blur." Although Mr. King has done a couple of book readings to the general public, this was the first to a roomful of CFS/ME patients.

Hopefully our appreciation and emotional support will carry through.

Mr. King closed out the afternoon by reading his last chapter titled "The Benefits of Illness" (used with permission).

Your choices are limited
And therefore easier.

Small achievements are automatically promoted as big ones.

You save on shoe leather.

Any woman interested in you is likely to be nice
Though you hope not too nice.

Unpleasant women stay away from you
Though some are confused as to their category.

You learn a lot about the behavior of birds at your bird feeder.

Your illness drives away those frightened by the fragility of life
That is, most men.

You are always home for parcel deliveries.

You keep up with the world news.

Your week never need be empty
While there are doctors to visit.

You watch many films, often twice
Since you forget.

The quality of patience is not strained
Since it's unavoidable.

Your dog need not feel inferior to you
Since you lie down with him.

You appreciate for the first time the pleasures of gardens.

You receive sympathy
Though actually not that much.

You no longer become angry
Because it makes you sick.

You are freed from ambition
Because it makes you sick.

You avoid heartbreak
Because it makes you sick.

You know yourself inside out.

Spiritual wisdom is forced on you
Again and again and again.

You become a connoisseur of repose.

You are motivated to think of others
Since you are so tired of yourself.

You can go to bed in the afternoon
Without a moment's guilt.

You are as sensitive to the air
As is a sailor to wind.

You have the space and time to daydream.

You always possess a perfect excuse
Though you do not use it
Since there is no end to that.

A review of Roger King's book, by Jean Zimmer, is available at our website: Love and Fatigue in America.

The Truth About Getting Sick in America - a candid look at the real problems

The Truth About Getting Sick in America: The Real Problems with Health Care and What We Can Do [Paperback], by Dr. Tim Johnson, Hyperion; 1 edition (October 18, 2011), ISBN: 1401310877.

Review by R. Sanderson

Everyone needing medical care on a regular basis for themselves or a family member has navigated through the labyrinth of health care providers, programs and plans. Reform of the existing heath care system is one of the most hotly debated topics, especially during this election year. The current structure has become very convoluted, extravagant, and inefficient. Change is inevitable. As patients, it is better to be aware of what is going on and what kind of changes to anticipate, rather than to be overwhelmed by all the emotionally charged rhetoric.

Dr. Timothy Johnson uses lessons learned from his extensive medical career and writes candidly about these issues in his book, The Truth About Getting Sick in America: The Real Problems with Health Care and What We Can Do. With a thirty year history as ABC's chief medical editor, "Dr. Tim Johnson", he has followed the developments in health care delivery. Dr. Johnson has been on the faculty of Harvard Medical School, on the staff of Massachusetts General Hospital, and some may be surprised to learn that he graduated from a seminary in Chicago and became an ordained minister before studying medicine.

First, Dr. Johnson dispels the commonly upheld notion that the U.S. has the best health care system in the world-the emphasis is put on the term "system". He explains how there is really no system in place (i.e., an organized, universal method) that is interrelated nor in any way working with each other. Instead, health care is delivered as a “hodgepodge” (using Dr. Johnson's own term for the current structure) of many separate mini-systems and private plans which operate independently. Data is not shared, programs cannot usually be transferred and choices vary from state to state and person to person. Some people can still buy into plans offered by their employers, but benefits packages are rapidly shrinking or coming to end. There may be some individuals who can afford to purchase insurance coverage on their own or retain their own physicians, but for the most part, fewer working Americans have health insurance.

Many obvious problems and defects, but also some more obscure ones, continue to escalate the cost of health care. Dr. Johnson breaks down this Goliathan challenge into five chapters: The Big Question, Problem, Fear, Sermon and Prediction.

The Big Question asks whether what is being spent per capita in the U.S. on health care is a good value and the answer, to no one's surprise, is no. Even though the U.S. spends twice as much as comparable industrialized nations, it actually ranks lower in life expectancy and the number of potentially preventable deaths (i.e., people 75 years old or less). By having to work with so many different insurance companies and plans, the billing process creates overhead and drives up overall costs.

The Big Problem examines how consumers and providers approach health care. Over the years, many American consumers have set a pretty high standard for the kind of medical care they want and expect. They want fast access, choice of the best doctors, and use of the latest technology, but they don't stop to consider the actual cost of these services nor how they get paid. Dr. Johnson finds such attitudes and expectations are unrealistic.

Currently, hospitals and physicians are reimbursed for procedures and services provided -payment incentives are linked to "what is done". Some large hospitals will obtain the latest technologies and use these to attract and retain physicians who will utilize these extensively. This sort of arrangement becomes financially rewarding to both, although it may not be cost-effective and at times, is unnecessary. Physicians have started to rely increasingly more on tests and procedures to get answers, some of which could have been figured out through discussion and evaluation. However, Dr. Johnson points out that in the current system, there is no easy, acceptable way to charge for "thinking time". He would like a change in how doctors are paid, by giving more value to good decisions, preventative care, and positive results. Furthermore, he supports fair and adequate compensation for primary care physicians, given the many important decisions they have to constantly make. Other factors driving up cost of health care, which are detailed in the book, are aggressive promotion of new medications, use of expensive treatments with poor results or no added benefits, malpractice and the practice of defensive medicine- more than a third of what is spent on health care, at about $800 billion, is deemed unnecessary.

The Big Fear is that of federal government involvement. Despite much criticism and phobia about the federal government's role in health care, Dr. Johnson reports that federal employees, including members of Congress, receive their health insurance from a program called Federal Employees Health Benefits (FEHB), sometimes also called the "Congressional Plan" (because this is how Congress is cared for). The FEHB program is overseen by the government, but it not owned nor operated by the government (i.e., for instance, it cannot and should not be compared to the British system). It offers many choices and these are the same to all federal workers nationwide; thus, the FEHB model provides a good example of a sensible, government-managed program, according to Dr. Johnson. What the American public may hear and fear are scary words such as "takeover" or the loss of one's "freedom of choice". But what they don't hear, or may not know, is the real reason why private insurance companies tend to be strongly opposed to this sort of program-their high overhead and the need to generate profit for stockholders negatively impact their ability to compete against such a program.

The Big Sermon touches on the moral aspects of health care. While many Americans feel that care should be given when it is really needed, Dr. Johnson would much rather try to prevent illness and provide treatment during an earlier stage of illness. People without health insurance are at a higher risk of premature death (i.e., at the rate of 45,000 deaths per year according to a recent Harvard study). Dr. Johnson uses two well-known parables to further review the ethical principles in health care and believes the debate may continue on how to provide basic health care for everyone, but not on whether to do so.

The Big Prediction starts out with this bold statement (in Dr. Johnson's own words), "NO DEVELOPED COUNTRY-INCLUDING THE UNITED STATES-WILL BE ABLE TO PAY FOR EVERYTHING FOR EVERYONE AT EVERY AGE THAT MODERN MEDICAL SCIENCE MIGHT DREAM UP". Some of the proposals made by Dr. Johnson as being vitally necessary in order to reorganize and improve overall health care, would include:

  • Payment Reform: change the way we pay providers
  • Independent Payment Advisory: create a board to manage Medical spending
  • National Information Technology Standards: build a functioning computer system through which data and records can be shared
  • Comparative Outcomes Research: create a program to study comparative effectiveness of existing and new treatments, drugs, devices, and use this data to guide decisions
  • Emphasis on Primary Care: restore coordination of patients' care to primary care providers and improve their pay and working conditions
  • The Medical Home: a new term referring to a facility where patients would go to for the majority of their care including diagnosis, treatment, prevention, screening and management of chronic conditions

Dr. Timothy Johnson tries to look at the big picture and urges changes from political leaders right down to the individual consumer. One has to give him credit for being so outspoken as he tries to help the average person separate fact from fiction, truth from scare tactics. Since the release of his book, many of the issues raised or the suggestions made by Dr. Johnson are echoed by other medical professionals or physician organizations in the news.

The Massachusetts CFIDS/ME & FM Association understands that patients with Chronic Fatigue Syndrome/Chronic Fatigue and Immune Dysfunction Syndrome/Myalgic Encephalopathy (CFS/CFIDS/ME) or Fibromyalgia (FM) have a much harder time in getting adequate or appropriate medical care. Any revisions, especially those tied to positive outcome, could be cause for concern for chronically ill individuals. The Association will keep readers informed about major changes as they happen. Meanwhile, we encourage you to make the most of your doctor visits and consider tips and suggestions provided at our website: Working with your HCP.

 

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