To find this primer. go to Massachusetts CFIDS
Submitted by Linda Johnson
My Bowl of Marbles
By Linda Jean Frame
I begin by thinking of energy as marbles. Each small, expendable amount of energy becomes a marble. I have a limited number of marbles to use each day and while the number of marbles may vary from day to day, I can pretty well judge each morning just how many marbles I will have to use that day. I then place my days supply in an imaginary fish bowl and begin my day.
With each activity - washing my face, combing my hair, etc. - I use energy. When I expend one marbles worth of energy, I extract one marble from the bowl. (I value each marble at a certain amount and can judge when I use that amount of energy. You might give a different value to each of your marbles, but it will all work out the same way in the end). Bigger projects require more marbles; however, on bad days you will find that even small activities will demand the use of more marbles than those same activities will require on your good days. These are times when it is very frustrating to have so little energy and to have to use so much of it to do even simple things, but that's the way it is!
Starting each day with an awareness of your energy supply will enable you to choose what is really important to you, and you can plan accordingly. Try to avoid frustration by accepting your limitations. Frustration is a form of stress and stress is a marble user!. Comfort yourself with the thought that you won't always have so few marbles to use. Tomorrow may be a better day. Remember to remove marbles during the day for any type of stress. Remove marbles for anything that causes tension or fear. (I throw out a couple of marbles every time I have to drive in rush-hour traffic; not because the traffic bothers me, but because I know that I must be a little more alert and stressed than when I drive at other times of the day. If something really BIG happens, and I am really stressed or shocked, I may throw the whole bowl away and give myself the rest of the day off).
If you should see me or phone me at one of those times when I have resigned from the human race, you might say, "Linda has lost her marbles!" - and you may be right.
(Reprinted with Thanks from The American Lupus Society, San Diego Chapter Newsletter)
City Air Quality to Be Probed
U.S. to Study Petroleum Fumes Health Effects
By Nancy Bazilchuk Courtesy of The Burlington Free Press
The Agency for Toxic Substances and Disease Registry held a hearing Tuesday morning (12/8/98) at the request of Burlington resident David Miller and the City of Burlington. Miller has health problems he says are related to work he did trucking jet fuel in the 1970's to the petroleum storage tanks near Lakeside Avenue.
The city made the request in part because the state's air quality monitoring station in downtown Burlington regularly shows levels of petroleum related pollution 10 to 30 times greater than state standards.
Miller said Tuesday he had been researching the health effects of petroleum products because of his health problems, and when he learned what the pollution did to animals in animal-based studies, "that is when I started to go a little ballistic."
"You have a whole population down there (near Lakeside) that is exposed," Miller told Gail Scogin, an environmental health scientist with the agency, which is a branch of the U.S. Department of health and Human Services. "The whole Lakeside neighborhood - we're not talking about a mile or two miles away (from the tanks). We're talking a few hundred feet."
Scogin said the agency would investigate whether there was or is a health threat from the tanks near the lake and from the air quality in Burlington.
"We're here to hear what community concerns are and to determine what in fact we can investigate," she said.
Brian Fitzgerald, with the state's air pollution control division, said the state has tested air continually in Burlington since 1993. Benzene, a component of gasoline and a known cancer-causing substance, regularly runs 10 times to 30 times higher than state health-based standards, he said. The state needs to develop a strategy to reduce benzene levels in Burlington but has not done so, he said.
Susanne Simon, with the agency's Boston office, said a team of health experts would try to piece together the past and present situation at the tanks, and what the possible public exposure to the fumes might have been.
"We start from the exposure - how are people being exposed," she said. "We look at fumes, smells, times of day ...but it may be difficult to correlate past exposure to adverse health effects."
The agency will report back to Miller and the city in the next few months as it continues its research, Scogin said.
Al Franken Isn't Funny Anymore
CFIDS Association of America / Rik Carlson
Al Franken, "Saturday Night Live" writer and actor and author of Rush Limbauugh is a Big Fat Idiot, is on a media tour to promote his new satire, Why Not Me? In this book, Franken is elected President, but is unable to serve because he becomes extremely depressed following a series of blunders during his inauguration. Rather than tell the American people that "President Franken" is extremely depressed, his political advisors decide to say that he suffers from "Chronic Fatigue Syndrome"a "very real disease that's physical in nature" but is "100% curable."
During his media appearances ("The Today Show", "Late Night with David Letterman") and on the books jacket, Mr. Franken has been joking that "President Franken" gets "Chronic Fatigue Syndrome" which is "the same thing as depression".
This is not true and it's just this type of misunderstanding that causes CFIDS patients such harm. Chronic Fatigue Syndrome is a prolonged and debilitating disease that has hundreds of Vermonters bedridden and homebound. While depression can be a secondary response, it is not a primary symptom, and while 'officially' there is no known cause, most studies lead to a viral etiology, but still no cure.
To be diagnosed with CFIDS, a person must have been so sick for more than six months that he or she can barely function. When CFIDS is misdiagnosed as depression, and solely treated as such, patients worsen and the length of recovery is substantially extended.
Al Franken was very gracious in his apology, but clearly continues to have no understanding of this disease. For him to trivialize CFIDS and use it for a joke causes severe hardship for those couragiously trying to recover. It's not right that millions of people heard and continue to read his misinformation but the apologies happen one at a time. Let him know what you think. He can be reached at:
The following is his apology to us:
Dear Sir or Madam,
Thank you for your letter regarding my regrettably confusing and misleading statements about Chronic Fatigue Syndrome on the Today Show and the Late Show with David Letterman.
In my book, Why Not Me?, President Franken becomes depressed immediately after taking office. Chronic fatigue Syndrome is used by the Franken White House as a cover for his/my depression. In no way did I mean to suggest that Chronic Fatigue Syndrome is anything other than a physical disease. Indeed, on page 238 of the book my press secretary says, "I think if you ask anyone who suffers from Chronic fatigue Syndrome, they'll tell you it's a very real disease that's physical in nature."
However, it is easy to see how someone could have gotten the exact opposite impression from my appearances on Letterman and particularly the Today Show, where I said, Well, the second day I get chronic fatigue syndrome, which is really just depression." What I should have said is something like: "On the second day, The White House says that I have chronic fatigue syndrome, but I'm really suffering from a debilitating bout of depression." I'm a writer, and I'm supposed to be precise with words, so there's no excuse for this mistake.
I understand that on certain CFS websites I've been slightly misquoted as saying on the Today Show: "chronic fatigue syndrome, which we all know is depression." I didn't say that, and it wasn't my intention to communicate that idea, but I certainly can see how someone could draw that conclusion from what I said.
I don't know precisely what I said on Letterman because I don't have a tape or transcript. I think it probably wasn't as egregious as the Today Show because I haven't heard as much complaint about the Letterman appearance.
I have received a tremendous number of letters and faxes from hurt and angry people who believed I was saying that chronic fatigue syndrome is depression. Again, I completely understand how someone could have drawn this inference from what I said, and I'm very sorry and embarrassed. Since my mistake, I have learned more about CFS and understand better than ever that CFS is a very real and often incapacitating disease. The last thing the sufferers of this disease need is the dissemination of misinformation.
I have made sure that in subsequent recountings of the books storyline I have made it clear that CFS and depression are not the same thing. Again, I am very sorry, and I ask for your forgiveness.
A Letter From Tonia Socinski
TO FRIENDS AND FAMILY:
I look normal. Don't let my outward appearance fool you; I am in pain and sometimes exhausted. I am not the same person I was a year ago, or two, or even seven years ago, depending on when it was you last saw me. I look healthy. I am not.
I have an invisible illness (ICI). My condition changes from day to day, sometimes hour to hour, or even moment to moment. Today I might be able to walk with you a few miles or even dance; tomorrow I may not even be able to get up off the couch, A week ago I felt almost human; Next week I may feel like something ;less than what the cat drags in. I may want to do all the same things I used to : to work out, take long walks, socialize, babysit, keep some semblance of household order, but I may not be capable of it.
If I say, "maybe later" or "I can't make it", please understand and accept this for what it is, which is not an excuse. It is a reason. I don't enjoy my new limitations. I hate it. I might even be physically able to do today what you wish for me to do, but if I know without a shadow of a doubt that pleasing you will mean for me later an incredible amount of pain, I must say no. I'm not lazy. I just hurt.
I absolutely do not want pity. This is no reason to feel sorry for me - life is not perfect, and life happens to us all. This is the hand I have been dealt, and I intend to play it out. I don't blame the world for what I suffer, I don't rally against God. This is no ones fault. Not even my own.
I do not crave attention. I didn't decide one day that I was tired of living like a normal person, and that the means to a life of never again having to work, having my whims catered to, having friends and family treat me specially involved creating symptoms no one could see under a microscope. I loved my life the way it was; I was never depressed and I had plans. This isn't a cry for your attention. It just IS.
I don't feel sorry for myself. Why should I? Things don't always work out the way you'd like them to - this is one of those times. I can live with who I am now. I may not enjoy each day as much as I used to, but I still live for each day, and embrace whatever I can get out of life. Pain and fatigue are my companions... but pain and fatigue are not me.
The truly hard part - if you cannot accept me for who I am now, I am sorry for you. I won't waste precious energy chasing after you to cling to a friendship that probably wasn't as strong as I had once believed it to be. I cannot force myself to readopt who I was before and reassume the same roles. In this - preserving myself and my state of mind- I have to be selfish. If you cannot accept that I might not be able to contact you every day as I did before, or engage in the activities we once did, whether it was training together and working out together, drinking, or just visiting, then do me a favor and let's quietly part ways with no ill feelings. My life is going in new directions, and for me that might not be a bad thing. If the changes I have gone through disturb you, hold your criticism. I don't need it. I don't want it.
Life deals us all a bad hand occasionally. This is my turn. It happens, I accept it. I hope you can, too.
Carol Westinghouse on Multiple Chemical Sensitivity
Mayor Peter Clavelle Issues a Proclamation
The University of Vermont has designated the month of October as Deaf and Disability Awareness Month. They have put together "A month of activities to learn about people of differing abilities, what they contribute to UVM life, and what UVM can do to create an accessable learning and working environment". Among the activities will be a panel discussion called "Invisible Disabilities" that will take place on Thursday October 7th from noon to 1:30 at the Waterman Lounge on the second floor of the Waterman Building. The participants are Catherine Nelson of the Lupus Foundation of Vermont, Jean Palmer of the Multiple Sclerosis Society of Vermont. Emily Murphey of the Fibromyalgia Association, Rik Carlson of the Vermont CFIDS Association and David Miller of Multiple Chemical Sensitivities. Each panel member will make a five to ten minute speech about the various conditions with the rest of the time allotted to a question and answer session.
It is a very positive climate that allows the recognition of "Invisible Disablities". CFIDS is a disease with a consistency of debilitating symptoms but to date with no defining marker. Diagnosis is through an involved process of exclusion. Most CFIDS patients don't look ill and as a result, the extent of their disease is diminished and disregarded by physicians and family members, neighbors and employers. That this disease is invisible is a major hindrance to its recognition and eventual cure. We applaud the University of Vermont for this effort and welcome the opportunity to continue the educational process.
The Immune System: Minding the Body and Embodying the Mind"
is a one day conference coming to South Burlington on Thursday 16 September. The program seems quite relevant for CFIDS patients. Topics to be addressed are: Understanding the Immune System, Chronic Disorders and the Immune System (including chronic fatigue), Biological Interventions (the role of sleep deprivation, nutrition and exercise), and Psychological Interventions (including pain management). The presenter is Steven Keller, Ph.D., from the University of New Jersey School of Medicine, which just happens to be a major CFIDS research center. The conference runs from 9am to 4pm at the Ramada Inn on at 1117 Williston Road. It costs $60 if you preregister, or $65 at the door if space is still available. For information, contact Debbie (849-6927) or Lisa (654-7784), who are attending, or the company producing the event, Mind Matters Seminars (650 949-0805; www.mindtext.com).
By Lisa Crean
This article is a follow up to the Spring 1999 newsletter article on exercise and CFS. It presents some additional insights on the
importance of physical conditioning, reports on an exercise class that has benefited local CFS patients, and invites you to get involved.
Exercise is critical to CFS patients who want to feel and function better. Scientific research has already demonstrated this,
says the nation's leading specialist on CFS and physical therapy, Dr. Sue Ann Sisto. "It is imperative that [CFS patients] remain as active
as possible and follow a well guided and paced exercise program." Dr. Sisto has noted striking abnormalities in the physiological condition
of CFS patients, such as poor posture, shallow breathing, a limited range of motion, and soft tissue shortening.
In a 1998 article entitled "Will Exercise Help CFS?" Dr. Sisto addressed the fears of many patients who have experienced bad episodes of
post-exertional fatigue. "Although CFS patients are often concerned that exertion can produce a flare-up of their symptoms, two
recently published papers indicated the contrary. That is, gentle physical conditioning can actually reduce severe fatigue and
On the other hand, she noted that "severe physical inactivity has major negative consequences for the patient [which are] important to counteract. [They
include] cardiovascular disease, neurally mediated hypotension, and bone mineral loss. Furthermore, the benefits of increased physical fitness include a better
immune response and an increased ability to perform cognitive tasks after a fatiguing task (e.g., shopping, commuting, housework, preparing to go to work,
etc.)." Simply put, moderate physical exercise can make CFS patients stronger, healthier and smarter.
Several Vermonters have been experiencing just such results with an exercise class that started this winter in the Burlington area.
Pamela Fontaine, a certified Jazzercise instructor, is teaching a fun and effective Jazzercise format called "Musical Chairs" that interweaves light aerobic dance
with gentle strength training. This low-intensity class is geared for seniors, first-time exercisers, and overweight people, as well as CFS, FM and other
patients with limitations. In Musical Chairs, says Pam, "I am hoping to accommodate you so you can start to feel stronger, and start that path of easing
some of the fatigue and pain."
VT CFIDS Association members--myself included--have benefited greatly from taking the class. Attending twice a week is increasing my muscle
strength vastly, which has helped protect weak and creaky joints, and prevent the injuries I was routinely getting from basic chores like carrying groceries and
laundry. It has also increased my flexibility, stamina, and sense of well being, reduced my pain levels, and even trimmed a few inches off my CFS-enlarged
body.Debbie Alsop drives all the way in from Fairfax to participate. "Pam is such a compassionate person. She's helping us so much. [Musical Chairs] is a good combo of stretching and muscle strengthening--it's really tailored very much to our needs." Rachel Sherman has experienced such positive results that she now assists Pam with the administrative side of class.
Pam teaches with an upbeat style and an encouraging attitude. The goal, according to Pam, is a "non-intimidating" atmosphere. "We are all here for fitness, friendship, and fun. We want you to get the best out of this program that you are able to tolerate. There are no expectations other than your own." Putting that spirit into practice, Pam frequently demonstrates modifications class participants can make
to accommodate their individual needs, such as slowed or accelerated pacing. To protect particular problem spots, such as arthritic hands, she also points out specific changes in routines or alternate exercises.
In addition to Musical Chairs, Pam is offering two higher intensity Jazzercise formats. While these formats may be too strenuous for CFS/FM patients, the classes are highly recommended for healthy friends and relatives--especially our dedicated caregivers who would like to burn off a little stress and a lot of calories. Regular Jazzercise is a highly intensity aerobic workout, followed by some floor work. Jazzercise Circuit Training alternates aerobics with strength training In both of these formats, the aerobic dance is high impact, but Pam shows easy-to-follow low impact modifications.
Classes are held at Burlington's Heineberg Senior Center, which features an exercise-friendly wood floor and air-conditioning. Pam's autumn grand opening takes place there Saturday 11 September, from 8-11am. Pam will be teaching free demonstration classes in all three formats: Regular Jazzercise at 8:15am, Musical Chairs at 9:30am, and
Circuit Training at 10:15am. There will be refreshments, door prizes, and even some line dancing demonstrations.
Starting 13 September, Musical Chairs takes place three times a week: Monday and Tuesday at 10:30am and Thursday at 11:45am. Regular Jazzercise is Tuesday at 6:15pm and Circuit Training is Thursday at 6:15pm. Pam's prices are very affordable, with a variety of payment options from monthly packages to individual class walk-in fees.
The Heineberg Senior Center is located at 14 Heineberg Road, Burlington, just off North Avenue in the New North End. (Take a right at the first light after the Ethan Allen Shopping Center.) Classes are held upstairs. Dress comfortably and wear good sneakers. Remember to come 20 minutes early to your first class to fill out some paperwork. Feel free to call Pam (878-0428) for more information.
See you at Jazzercise!
First Annual "We're Sick and Tired of Our Stuff" Rummage Sale
We need your help in turning trash to cash! We won't be doing the Christmas doll house raffle this year, so we're trying our hand at
other fundraising ideas. "We're Sick and Tired of our Stuff" is the theme for a rummage sale on Friday and Saturday, 17 and 18 September,
from 9am to 2pm each day. Mary Eckert has graciously offered her home at 14 Colbert Street in Essex Junction as the site. (Directions from
Burlington: I-89N to Exit 15, right onto Route 15E, left on Susie Wilson Road, right on Blair Road, left on Colbert.)
How you can help: 1) donate, 2) volunteer, 3) publicize, and 4) shop. First, bring donations of clean, salable items to the next support
group meeting, Wednesday 15 September at 7pm. (No books, please, except for children's books.) If this time doesn't work for you, call
Mary, Rik or Lisa to make other arrangements. Second, volunteer to help with set up Thursday afternoon, to sell Friday or Saturday, or to
bake goodies to be sold. Third, tell all your friends, family and neighbors to attend the sale with wads of cash in hand. Fourth, come
shop yourself! It will be fun!
Please volunteer to help, even if only for an hour or two. The doll house raffle became unmanageable because the work burden fell on just
a few people. We all have to budget our energy wisely, so help make the rummage sale work with whatever goods and time you can afford.
Contacts: Mary 879-6215, Rik 1-800-296-1445, or Lisa 654-7784.
COPING WITH CFIDS: A Guidebook By and For Young People with CFIDS
This booklet is written by four young people with CFIDS for young people who have recently been diagnosed with CFIDS. The authors remember feeling alone and afraid, confused and isolated when they first became ill. It was hard to understand what was happening and why, let alone try to explain it to others. By sharing their experiences they hope to offer a better understanding of what life with CFIDS is and can be. For copies of this new booklet, please send $1 per copy for postage and handling to:
The CFIDS Association of America, Attn: Coping with CFIDS,
PO Box 220398, Charlotte, NC 28222-0398.
Social Security Signs New CFIDS Ruling
On April 30, 1999, the Social Security Administration (SSA) issued a ruling clarifying that persons with medically documented CFIDScan be found to have a "medically determinable impairment."
The ruling provides guidance to disability claims processors for applying SSA policy to applications for SSDI benefits that result from disability due to CFIDS. While the new ruling will hardly "open the f;loodgates" for CFIDS patients to garner disability benefits, it should make it easier for disabled CFIDS patients to acquire benefits at an earlier stage in the SSA appeals process.
Overall the new Social Security Ruling should improve disabled CFIDS patients' outcomes in the SSDI process. It is binding on adjudicators at all levels -- initial application, reconsideration, and administrative law hearings -- and it applies when SSDI recipients are periodically reviewed (for Continuing Disability Reviews or CDRs). The document, "Social Security Ruling, SSR 99-2p.; Titles II and XVI: Evaluating Cases Involving Chronic Fatigue Syndrome (CFS)" should become a critical reference in any CFIDS patients application for federal disability benefits. This document is available by calling or writing the Vermont CFIDS Association, PO Box 3162, Burlington VT 05401-3162, 1-800-296-1445.
This is all about gratitude - for a change in attitude. Every time I go for a walk in the woods, my mind goes on a journey, too. Today the sky was overcast when I started out. It is the end of August, and next week school will begin again for another year. When I was growing up, it always seemed to me that each year began on the first day of school. It was so exciting, yet the saddest of all days, because it marked the end of summer and our long, lazy, wonderful days at the lake.
Today, as I walked along beneath the gray, bits of red peeking out from here and there, I stopped on my path to think. As I stood there, a great weight came upon me, strong enough to make me wonder what was causing it. Why had this heavy feeling, not quite of depression, but still of some significant sadness, overtaken me so quickly? Then I realized that it had to be the sadness of summer ending and the lack of light on this dreary day, a portent of things to come. I felt compelled to change directions, and walked back the way I had come, turning another way to make my walk longer. And I thought as I meandered, taking in and considering whatever ideas came to me.
That change in direction proved to be inspired, effecting a change in the way I looked at things. As I lengthened my way, the answers came. The sun began to filter through the clouds, and the sunshine brought a wonderful enlightenment before it was lost from view again.
I began thinking about what a friend said to me the other day. She was talking about the rush in preparation for the first day of school, as she works at a college in town. It was always difficult for her, she said, because there was so much work, but largely because it marked the end of summer and all that meant to her. She likened it to grief, a kind of mourning, as its passing. I had never looked at it that way, but as she explained her feelings to me, tears came to my eyes in understanding. It was then that I realized why I underwent the same emotions at this time of year, for I grieved right along with her. I had always thought it was the dread I felt not just at Fall coming, but concern about what the winter to follow would bring. The cold, the trees bereft of leaves, the brown, the gray, the sunlight fading chilled me to my bones. And yet I had always held a certain affection and appreciation for many of the aspects of the autumn. It has its own beauty, and I always saw and reveled in it to a certain extent in the midst of those anxious feelings.
As the sky darkened again on my walk today, the change of directions and the gift of sunshine had had their effect. I sat down on a log, looking at the woods around me and thought of this change of seasons in quite a different way. We look at spring at being a rebirth. Well then, why should we look at autumn as an ending? It is, after all, simply another birth - the birth of a brand new season, another way to see the world around us. The earth has a new look, a refreshing new feel. New birds arrive to winter with us, and there's a rich, earthy smell in the air. There is nothing quite like the feeling a bright autumn day can evoke, with its magnificent cobalt-blue sky and the vibrant reds, yellows and oranges of our lovely trees. There is no light quite like that cast at dusk on a chilly day in November, outlining bare branches and shadows in stark contrast against the sky at twilight.
How lucky we are to live in Vermont! How blessed we are to have the privilege of watching our five seasons come and go. Yes, five including mud season, though some count our seasons in a different way.
So, as the sun lowers in the sky over the next few months and the days grow shorter, let us think of things with a different perspective than ever before. It is, when all is said and done, just another slant of sunshine and shade; a glorious, delicious adventure awaiting us from day to day, just to see the way the sky appears, the way the sunshine falls on the earth, offering up its light and warmth to us eternally. Let us honor the earth in all of its many facets, noontime and night, at every season.
Those of us who are affected by the end of summer blues can take heart! It's just a new beginning - a great time for a change in attitude.