What the Heck are They Talking About: Neurological CFS

Worse than I

As a photo instructor I often asked my students to tell a story using an image without a caption as the jumping off point. Sometimes the words were poignant more often we got into really outrageously funny battles to top each other and I laughed as hard as anyone. What mattered was not the details, but giving voice to the silent language of emotional content. 

This events of this past week forcibly reminded me of the visual storytelling I taught in what seems like another lifetime. Disabled or not, like all photo editors I was glued to the wires this past week, watching a cascade of images of the aftermath of the tsunamis that stole so much from so many this past Sunday.

Unlike the unceasing clamor of the newsrooms, I viewed these images in complete silence; my head filled with the stories that only the dead can tell.

As may be for many others, images of death and grief dissolve the boundaries of culture, religion and race, leaving my soul twisting, my heart clenching, my steps swiftly seeking out my only available child: her protesting squeals smothered by kisses, holding her tightly, attempting to ward off all danger with the ferocity of love. If I could have gotten my hands on my older ones at that  moment they would have faced the same physical fate. As it was, I too know the powerless uncertainty that goes with physical distance from a loved one.

But, this time the stories resonated at a far deeper level in me: they forced me to lift my glazed and staring eyes and realize that belly button lint was obscuring my vision, not death.

You see, the reality of nonpsychiatric CFS/ME and fibromyalgia, sometimes feels as if they've drained my life of all color. A form of living death I moan more or less meaning it, but, be that as it may, I am alive. And while my pleasures may be simple, they are still mine. And no one can take them from me without my permission.

Okay I see your point, but natural disasters and wars never ask anyone's permission anyway.

Like so many others, including you, I am weathering a disaster of incomprehensible magnitude, unsought, and unlooked for, and yet, I am still here. A rather small and battered scrap of humanity still clinging to life I snort to myself with a roll of the eyes.

Yet, hope and joy remain mine for the taking just as they do for all living beings.

Unlike those still forms whose stillness is so unyielding: a grotesque parody of the life-giving renewal of sleep, unlike my own parody that always yields to morning light.

We do live and no matter how little we have, that is priceless.  Please, please consider giving back to the world even if all you have is a budget busting $5, even if parting with $5 seems impossible. I know for us, my daughter and I discussed it and decided that more PBJ sandwiches wouldn't kill us. That's not melodrama just the reality of disability and poverty. And yet I'm must beam with pride a little here. Generous relatives and friends contribute much of the sparkle to my daughters world and yet without discussing it with me, my daughter, like hundreds of other kids, took her Christmas money into her school to contribute to schoolwide donation. She may be one ill little kid, but her heart and soul are strong and there is nothing crazy about her.

Okay, so I just can't resist the occasional aside, but be that as it may, my point is unwavering: maybe, sometimes, giving is the best possible way of acknowledging that life is worth living even if the trigger is the silent language of loss.

Donations can be made through both the Red Cross and Doctors Without Borders sites. If you wish to donate to the Red Cross with the click of a button, Amazon.com home page has made that possible for their readers. As of December 30, 2004, @ 7:20 EST,  94,903 Amazon.com visitors have donated $6,107,582.21 to the Red Cross. You may also wish to donate through Oxfam.

I would also like to mention that you can also donate from the home page of the British Medical Journal along with other websites of all persuasions. It reminds me that all of us are human beings capable of great compassion, as well as the overwhelming talent to make a horse's patootee out of ourselves.
Shhhh! Of course I mean BMJ not me and other people who think like I do -are you daft?! LOL fellow travelers, laugh out loud we are pretty hilarious bunch.

 

"May The Lord bless thee, and keep thee: the Lord make his face shine upon thee, and be gracious unto thee: the Lord lift up his countenance upon thee, and give thee peace."   -Numbers 6:24-26

29, January UPDATE: If the idea of bearing witness through the photographic medium interests you, you may wish to read the words of Mehul Srivastava, 24, a reporter for the Dayton Daily News who calls it the "heaviest weight in the world."

 

Million Letter Campaign May, 1, 2005

Not a number? Not just a statistic? Help put a human face on the neurological disorder, Chronic Fatigue Syndrome and rheumatological disorder, Fibromyalgia. PWC Pattie Caprio is asking all of us (hopefully at least a million) to write a one page letter to be sent to five or more media outlets all on May 1, 2005.

According to Pattie, everyone needs to send the letters out ON THE SAME DAY as everyone else, so that the letters are received at the same time and just prior to Fibromyalgia Awareness Day (International ME/CFS Awareness Day) on May 12, 2005.

Although letters have been requested for survivors of CFS/ME and Fibromyalgia, I would encourage the people that love us and care for us to write a letter also describing these disorders from either their point of view or to advocate for someone too ill to advocate for themselves. You can do it. You have four months to work on it a little bit at a time. Ask a friend or neighbor to address the envelopes for you. Or in my case help me figure out print for the umpteenth time. LOL.

Pattie requests:


Your ONE PAGE letter should contain the following:

1.  YOUR NAME

2.  LOCATION (City, State and/or Country)

3.  OCCUPATION or achievements prior to FMS/CFIDS

4.  DATE OF ONSET of your FMS/CFIDS (and what you think caused it)

5.  SYMPTOMS you suffer from

6.  HOW this illness has affected your career, finances, relationships, family, etc. (be sure to mention any LOSSES you have experienced - oh yeah, and keep it under one page. LOL)

7.  WHAT you are asking for:  e.g., recognition of this illness, for doctors and lawyers to take FMS/CFIDS seriously for disability cases, for understanding from family and friends, for money to be spent on research for a cure, for media coverage, or whatever else comes to mind.

Being a wise woman, Pattie notes that most of us could write a book about our illness, assuming we have the energy, but still asks us to please limit our letters to one page. Instead of a chatty letter, you may wish to send a bulleted outline of the above points. Note: Montel Williams has MS and Mike Wallace of 60 Minutes has had CFS/ME.

1.  THE FIRST LADY, WHITE HOUSE

1600 Pennsylvania Ave., NW

Washington, DC 20500

2.  Story Editor

20/20, ABC NEWS

147 Columbus Ave., 10th Floor

New York, NY 10023

 

3.  FOX NEWS

5151 Wisconsin Ave., NW

Washington, DC 20016

4.  Story Editor

60 MINUTES, CBS NEWS

524 West 57th St.

New York, NY 10019

 

5.  Senior Supervising Producer

MONTEL WILLIAMS

433 West 53rd St.

New York, NY 10019

CANADIANS:  Please use the following address instead of the White House (#1 above): CANADA PENSION PLANS, HUMAN RESOURCES DEVELOPMENT CANADA, DISABILITY DEPARTMENT, P.O. Box 2710, MAIN STATION, EDMONTON, ALBERTA,CANADA,T5J 4C2

 

Other suggested recipients are:

 

Dr. Phil Show

5482 Wilshire Blvd., #1902

Los Angeles, CA  90036

 

Barbara Walters

23852 Pacific Coast Hwy., Suite 401

Malibu, CA  90265

 

Also, you can write your Congressman by visiting:

http://www.arthritis.org/advocacy/priorities/priorities_contact.asp

Dominie Bush adds: 
dom@fms-help.com

Please remember that we don't want to dilute the quantity of our letters to individual recipients, so if you can only send five letters, please send them to the five MAIN addresses listed above. Oprah Winfrey is not included in this list, because she no longer accepts unsolicited input for her shows.

We need to build enthusiasm and momentum in the fibromyalgia community between now and MAY 1, 2005!  Please tell fibromyalgia support groups, friends with FMS/CFIDS, and even doctors who have experience with FMS/CFIDS patients and understand this condition.  Forward this information to anyone you know with FMS/CFIDS or post it on fibromyalgia newsgroups.  We need to get the word out!

I don't know of a better way to accomplish our goal of FMS/CFIDS Awareness!  It will take just a little effort from each of us in telling our own unique FMS/CFIDS story in "one page" form and sending it to people who have power and influence in our society.  Remember, we are doing this not just for ourselves, but for millions of sufferers worldwide.

P.S. Million Letter Campaign T-SHIRTS & SWEATSHIRTS are great for individuals or support groups!   Pattie designed the logo which appears at the top of this page and also on the shirts.

For more information please go to:

http://www.fms-help.com

Sorry, I still haven't found a way to add hotlinks to my posts. :(
TADAAA! I changed over to Netscape 7.2 and suddenly hotlinks were available. Isn't technology a marvel. Ooops I think I just dated myself.

How squiggles and colored brain maps may change how we view CFS and Fibromyalgia

Of all the things I’ve lost, I miss my mind the most!

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Ever find yourself trying to start your car from the passenger seat? Maybe you spend your day walking in endless circles trying to remember where you were going and why. Or maybe you just stare at your child’s math homework in panic because you can’t do the calculations either. Worse yet, the other day you had to hand the store clerk your cash so that they could count out the correct amount because you could not figure it out for the life of you. Has the concept of multi-tasking become a joke?

Hmmm, what could it be?  Depression, personality disorder, maybe Alzheimer’s?  No, you probably don’t have Alzheimer’s and it has nothing to do with your mental health either.  What you are experiencing are some very common cognitive dysfunctions, which are part and parcel of Fibromyalgia and Chronic Fatigue Syndrome. The medical term for what is happening is encephalopathy.

This is brain damage. Before you panic, CFS researchers currently classify it as one of the reversible encephalopathies although they have yet to come up with a cure.

How do researchers know it is encephalopathy? And how do you personally obtain objective medical evidence of this?

As there is a great deal of heavy-duty research and scads of unpronounceable terms related to following testing, I’m going to try to stick with the “cliff notes” version for this column.

The key to understanding and quantifying this baffling constellation of symptoms is a quantitative EEG (qEEG) also known as brain mapping. Generally, EEGs detect electrical changes associated with epilepsy, sleep disturbances, and metabolic or structural encephalopathies.

Essentially, an EEG is the recording of electrical patterns at the surface of the scalp that primarily reflect cortical electrical activity or "brainwaves." A quantitative EEG (qEEG) is the digital reading of an EEG. Instead of squiggly lines on paper, a computer image is then generated. The advantage of brain mapping is that the brain waves can be sampled much more frequently (usually 128 or 256 samples per second) and then compared to a normative database. Whew! Say that ten times fast.

Basically, there are four types of brain waves: beta, alpha, theta, and delta.

Beta waves (16-40 Hz or higher) are fast, spiky waves seen when the healthy subject is alert and thinking with focused attention. Alpha waves aren’t quite as fast as beta (8-13 Hz), but they are seen in healthy subjects who are awake but not engaged in substantial mental activity.

In healthy subjects, the brain uses 13Hz (high alpha or low beta) for "active" intelligence. Information processing occurs at a higher frequency approximately 40 Hz.

Theta waves (4-7 Hg) are slower and more rolling and in healthy subjects seen either in deep meditation states (high theta) or in the beginning stages of drowsiness and sleep. Delta waves (1-4 Hz) are extremely slow waves normally found only in deep sleep and coma states in adults.

VERY IMPORTANT!  RED LIGHT ALERT! The presence of Delta waves in waking adults is pathological and a clinical sign of brain dysfunction and damage.

And a growing body of research shows that patients with Chronic Fatigue Syndrome and Fibromyalgia have these in spades nor is it random. Research shows a distinct pattern of abnormally slow brain wave activity that is virtually unique to CFS, as well as the patterns found in Fibromyalgia. It is this pattern that substantially cripples cognitive function, particularly in the domains of attention, focus, executive function and memory.

These documented patterns of abnormalities in electrical relationships amongst various areas of brain are made by comparing the patients eyes closed recording with a normative database in addition to the added component of functional testing. This "Functional" qEEG testing includes recording under cognitive challenges, allowing for the examination of the brain's “cognitive” responses to reading, listening, math or other cognitive demands.

A number of neurophysiologists believe that some of this damage can be reversed by the use of neurotherapy, a treatment that helps the patient recognize the patterns and redirect brain waves. Results however show considerable variations. The greatest success is, and isn’t this always the case, with those patients more moderate symptoms.

Whether you need objective testing of cognitive dysfunction to back up a disability claim or you want to be tested to determine the suitability of neurotherapy for your individual circumstances, qEEG is a promising field.

Even as I write this, an SSDI judge has ruled that the results of my qEEG testing will be the basis he uses for deciding whether my claim for SSDI disability will be denied or not. My entire life hangs in the balance dependent on pretty pictures from a computer.  In my book, that makes qEEG testing both relevant and critical.

Other sources of information:

http://www.arthritis.org/communities/Chapters/UTI/Archives/FM_Connect/Brain_Mapping_and_Neurofeedback.asp

http://www.cfsdoc.org/eeg.htm

http://www.snr-jnt.org/journalnt/vol7/jntvol7.htm

http://start.eegspectrum.com/Newsletter/dec2002.htm

http://www.cinda.org/support/pamphlets/Preston2.pdf

http://www.cfids.org/archives/2003/2003-1-article07.asp

Does your doctor have ‘disturbed physician syndrome’ (DPS)?

In an attempt to get the focus of physicians corrected pioneering fibromyalgia expert Dr.Yunus speaks of the ‘disturbed physician syndrome’ (DPS).

He says, "DPS (that is doctors treating people with FMS) people are troubled because of their preoccupation that FMS patients are psychologically disturbed. It is not the FMS patients who are disturbed it is the physicians who are psychologically disturbed because they ignore the data and whatever data there is they manipulate to say what they want."

And I say AMEN! This syndrome is also regularly found among physicians who are seen by patients with Chronic Fatigue Syndrome (CFS/ME).
And yes, I know it is slightly more complicated than that, this blog isn't ghostwritten ya know.

More from Lisa Lorden.

Carl'a Stevens on Life with Chronic Illness

Carl'a Stevens: My description of my life with chronic illness . . ..

   In the simplest of words I want to say cheated, robbed, debilitating, crippled, my life stolen from me and anything else you can think of that explains the death of your old life as a human being on this earth. In other ways I can say I found a new life, with more meaning. A life that has humbled me, teaching me new ways to adapt to what has been changed.

I have watched myself go from walking miles to walking only minutes. I have seen my face change from vibrant to stressed and my body from youthful to aged in a matter of a couple years. I have seen myself go from running up flights of stairs to crawling up them and scooting down them on my rear end. At times I wonder, am I 31 or am I 71?

   I question my future . . . Will I still be walking or in a wheel chair? I use a cane on bad days, but will it become a way of life for me later? Will I be able to go to my son's football games shouting from the stands, or will I be on the sidelines watching in uncomfortable pain?

   People who do not understand this illness cannot possibly understand what goes on in our thoughts daily. The questions, the concerns, the worries.

No matter what we are told about taking it one day at a time and how we need to relax and make the most of our life, no matter how often we hear this, it still doesn't seem to leave our focus. It is what we think of when we wake up and what we think of when we go to bed at night. It is in our thoughts all the time because we feel the relentless pain and fatigue all the time. We wake up feeling it, we focus our meals around it, we socialize based upon how we feel for the day and how much we can handle activity wise, we take meds or don't take meds depending on what we are going thru . . . all these things affect every aspect of our lives. It is an indescribable feeling. Those who have this illness know the unpredictability of it. We never know how we are going to feel from one hour to the next. It all depends on what "IT" wants to do.

    Once in a while we find ourselves having a day that is so blissful . . . no pain. . No fatigue, everything is like a dream. We forget our limits in that moment and live the day out like we are totally normal.

Then just as quick as it has come, it leaves and our bodies respond to all the activity we brought upon it on the good day. In spite of how gloomy this all sounds, I have found peace with it. I do have bad days as most all have with this, but yet in the midst of it all, I have learned how to manage it some and how to live with it. I have no choice but to live with it.

I do not want to become a statistic to the suicide trend that Fibro had become for many. I don't want to give up and let it dissolve my life either. I am not ready to give into it all yet. I am not ready to accept that I am disabled due to it. I am not going to let it take my dignity and rule my life. It has to a certain degree, but it cannot have it all.

     I am still my own person, my own woman wanting to have some control yet of my body. I want freedom to make choices on my own whether or not I can or cannot go to the store, walk to the park with my son, go to a family function, work, and talk on the phone.

All these things can be robbed completely from me but I won't let Fibro take what is left of me. I have no control on to what degree the Fibro wants to attack me. It can bring me to my knees, but it will not defeat me.

I will not let it take from me my as a whole, my dreams, and my independence. I need to hang onto what little bit I have and fight it all with the will power I have. I am too young to suffer this way and say, ok you have me. I may have to suffer, I may cry, I may struggle, I may yell and feel robbed, I may complain and I might try to find a cause of it all, but yet, I am still here with it, living, breathing and I am still alive.

I have a purpose and am trying to find a reason for it all, a meaning for why it has selected me. I know I am not alone and there are others who feel as I do. If I focus on the ifs, why me, and what will become of me I am only wasting my time in finding meaning to it all.

    I will never find the purpose for it, but I know that God knows His reasoning. I am thankful for this illness in a way because it has changed me in so many ways that are positive that I had never expected.

I have found peace in knowing that thru this illness, I can use it to help change the way people treat those with chronic illness. I have an opportunity to help change the world's thinking and help spread awareness and hope. 

If anything I can say about all of this is that I have been humbled as a person, sensitive to others needs. The desire to find all the answers has been instilled and the wanting to help others cope ...This has been my therapy. Trusting the Lord with every aspect of my life and finally learning to let go and let Him take over. Knowing that I don't have all the answers and trusting that some day I will see the true reasons why.

Until then, I would be selfish in just sitting and complaining and not doing anything with it. I think in all our lives with Fibro and chronic illness in general, we find this to be true. We have a bond that no one can even understand.

I have great supportive friends, supportive Husband and family, yet I know they cannot possibly really know what it is like to feel like you have the flu everyday. They don't know what it is like to hurt and ache all the time. Their headaches are our good days.

I am grateful to the people in my life who have made a difference and do support me though. They help me keep going. With my faith in God, my family and friends, life with their burden may seem much lighter. 

It is important to find support. Some aren't as fortunate and have no one in their lives, but finding a support group or support network is the best way to cope when you feel you have no one. The groups develop friendships that last a lifetime and the much needed support to handle life's tough days.

~Carl'a Stevens

Kate's note: Sometimes (probably many times) someone else says it better than I, and on such occasions I hope to post the thoughts of others in addition to my own. However, nothing will ever be included without the author's permission, which Carl'a has graciously provided. Carl'a's website is chock full of information and provides a spiritual home for people who are trying to reconcile their faith with what is happening to them. Please take time to visit her.