Linda's Corner

It is well accepted that our emotions affect our health.  I have also found this true about my attitude regarding my body.

Over the course of illness, I have been subtly (and not so subtly) subtracting from how I felt about this body of mine.  I had fallen seriously out-of-like.

It is a given that I have not liked the way I have felt since becoming ill in 1997.  Added to this — I have not liked the way I’ve looked for these 15 years of illness.  My formerly bright eyes went away, leaving a flat look, accentuated by dark circles.  And that’s just the beginning.  I barely remember when I had perfect teeth and a toned body.  AND I have not been at peace with aging.

From head to toes (literally), I did not have much good to say about any part of my body.  And most parts rarely felt good.   There were times when discomfort, pain, fatigue, cognition deficits were winning.

We do not know what physiologically caused my illness or yours.   Some scientists are in serious pursuit of biomarkers, cause(s), efficacious treatments and preventions.

While we’re cheering them on, I decided a while ago to go full bore on self-help:  On-point reading, brain fitness programs, a little talk therapy on occasion, appropriate exercise, the full line-up of Bruce Campbell’s Self-Help Courses, support group and most recently, Dianetics, in the form of study and Dianetic Assists.

Here’s a realization that was helpful to me:  My lack of affinity for my body was hurting me – literally.  There is a component of my pain that is a protest – much like a child throwing a tantrum as a means of getting some caring attention.  Layered upon this I found and released a growing indifference toward my body that was ‘quietly’ interfering.

I discovered these negative opinions were not innocuous; they had bored into my health and were adding their own imprint upon my physiologic ME/CFS MCS & FM symptoms.

Once clear about this, it was not difficult to find (mostly re-find) authentic caring.  While it is not wholly accomplished, I have had a change of heart — about my body, the way I look, my illness and even about aging.

I want this body; I am so grateful to have it, limitations and all.  I work everyday at doing those things I have control over that can reduce or eliminate symptoms and brighten my attitude about my body.

My interest in the brain is centered on cognition, especially critical thinking and memory.   I have no credentials to speak to mental health.  However, based upon my own current experience, I want to say a few words about diet as a contributor to mental being.

I was already noticing some unpleasant physiological changes, when I realized I was also experiencing some lethargy and emotional dullness – and suspected my “Holiday Diet” could be a culprit.

Did you know that your gut is considered by some care providers and educators to be the body’s “second brain?”  I was reminded of that in an article by Dr. Joseph Mercola, D.O. that I have quoted below.  It gave me the final piece of motivation to start the New Year by adjusting my diet.

“One of the reasons that dietary changes work is because it helps alter your gut flora in very beneficial ways. The beneficial bacteria in your gut have a profound influence on your health, including your mental health.  They produce substances that your body needs.  And, your gut actually produces more serotonin than your brain does!”  (Did you know that?)

“Your gut is frequently referred to as ‘the second brain,’ and when you consider the fact that the gut-brain connection is recognized as a basic tenet of physiology and medicine, and that there’s no shortage of evidence of gastrointestinal involvement in a variety of neurological diseases, it’s easy to see how the balance of gut bacteria can play a significant role in your psychology and behavior as well.”  He goes on to say that nourishing the good bacteria is vital.

(I visit the site Mercola.com pretty regularly for articles and references for natural health topics that interest me.)

Here’s what I’ve started:  1)  Begin my day with fresh fruit.

2) Eat several servings of raw and lightly steamed vegetables each day.  Making my own 6-vegetable salsa really, really helps me accomplish this.

3)  Reduce my wheat intake.  I’m back to grinding fresh wheat and baking my own bread.  If it doesn’t help enough, then I’ll go after gluten.

These last two are the most difficult for me:  4)  High Fructose Corn Syrup (HFCS), or corn sugar.  It’s in everything that tastes good.  I already avoid Aspartame, Sorbitol, (sp?) etc., so diet versions of anything won’t help me.

5) Sugar.  I’ve incorporated Stevia when I can; organic cane sugar as a back-up.  What I really have to do is reduce consumption of any form of sugar.  Not easy for me.

In just two weeks of these dietary changes, my emotions are brighter and I don’t feel lethargic.   This is probably not the full story, but I do think my dietary changes have contributed to my mental outlook improving.  My body feels better too.

I’ll keep watching and let you know.

Do you think there is anything to this business of “gut as a second brain?”

I am one of a few OFFER followers who have completed the self-help training offered by www.CFIDSselfhelp.com.  The Introductory Course worked for me.  It might work for you.

OFFER is prepared to help. If you think this course might be right for you, please follow the directions at the end of this article.   Time is short; take steps now.  But first, here is my experience with the course.  Read on.

*****

My textbook arrived courtesy of USPS.   Thumbing through it, I knew I was in for an adventure in self-discovery.

Start day came.  I turned on my computer and went to class in my PJs, laying on my day bed.  I didn’t have to drive, park or walk to class.   I went to my email and there it was — Week One.

Introductions came by email from across the globe.  Every story was different yet we all shared a desire to improve, encouraged by knowing these materials enabled Bruce Campbell, Ph.d., the author, to return to his pre-illness level of health and activity.

For most of us, “CFS and FM are long-term conditions.  Conditions that have no cure, have to be managed.”  Bruce’s self-management course launched with “Managing Symptoms: Fatigue & Pain”.  The assigned reading was excellent and insightful.  Our first discussion, read : “What are some strategies for managing fatigue?  What are some ways to control pain”?

I took my time.  Before week one was over, I sent my discussion and read the email contributions of my classmates.

We individually selected a self-help skill or activity to try or improve upon, then shared our performance results.  The gentle accountability was helpful.

At week end, the moderator recapped the results of our first week.

And so it went, for six weeks.

Interested?

Instructions:  Go to www.CFIDSselfhelp.org, click on the On-Line Courses tab near top of home page.  Click on  the Introductory Self-Help Course.  The next course begins on January, 9, 2012.  Enroll in the course now by following the instructions.

Under the second heading: Cost and Registration, you will see they offer a limited number of scholarships.  If you click on Scholarships, you will see the requirements. Take note:  The deadline for a CFIDS scholarship is December 12, so the time is short.

OFFER can help too.  If you are a follower of OFFER and have financial need, I invite you to apply for an OFFER 50% scholarship (worth $17.00), instead of the CFIDS scholarship. Time is very short; take steps now.

How to Apply for an OFFER Scholarship:  1) Attest you have a financial hardship to pay the $30.00 tuition and 3.99 processing fee and that without help you could not enroll.  2) Write an essay stating:  ”Why I Think Self-Help Strategies, in General, Could Assist Me in Managing My Health.”  3) Submit your confidential application by typing it into a COMMENT box at the end of  this Blog.  I will copy your COMMENT/ENTRY and send it to the judges.  I will NOT post your COMMENT/Application, so it will be confidential.  If you have questions, submit them as a COMMENT and include your home phone number. I will respond directly.

I have been writing on the subject of cognition and ME/CFS & FM for a while, gathering my information from the vast body of dementia clinical research – hoping those discoveries would have some relationship to our needs.

It is a rare occasion, indeed, that I can open up a publication and find anything about ME/CFS & brain function.  But it happened recently when I gave my Summer-Fall issue of SOLVECFS Chronicle a thorough reading.  This publication never disappoints.

Here’s my truncated summary taken from the briefs referenced in SOLVECFS.

Studies of Brain & Autonomic Nervous System

1)  Cerebral Blood Flow.  Using an MRI technique, a New Jersey group compared blood flow in the brains of 11 CFS subjects and 10 age-matched healthy controls.  As a group, CFS patients had significantly lower global cerebral blood flow across nearly all regions assessed.   Published initially in the Journal of Neurological Sciences, Feb 15, 2011

2)  Impaired Cognition.  In Belgium, a group of 25 subjects with CFS, 25 with Major Depressive Disorder and 25 who were healthy were assessed using standardized tests measuring attention, working memory, along with verbal and visual episodic memory.  Patients with CFS had slower phasic alertness, impaired working, visual and verbal episodic memory compared to controls.   This study confirmed the presence of an objective impairment in attention and memory in patients.  Published initially in Clinical Neurology and Neurosurgery, May 2011.

3)  Brainstem Dysfunction and Altered Homeostasis.  At Harvard, electroencephalograms (EEGS) were performed on CFS patients, healthy controls, those with major depression and patients with prolonged generalized fatigue.  Ten factors distinguished CFS subjects from healthy controls and depressed controls.  “CFS patients manifest patterns of functional brain coupling that differ from those of normal controls.  Such a difference of CFS brains physiology may help explain known differences in cognition, memory, sleep and affect that afflict CFS patients.”  Published initially in BM Neurology, July 1, 2011.

I encourage you to contact the CFIDS Association of America  (CAA) and inquire about receiving this marvelous publication, SOLVECFS Chronicle, that generally comes quarterly.  704 365-2343; email: cfids@cfids.org.  CAA: P.O. 220398, Charlotte, NC 28222-0398.

This formula refers to the well-tested theory that a person with normal short-term memory can hold 5 to 9 items (7, + or – 2) in their working memory (in use at the moment) and recite them back.  Below that number (less than 5), short-term memory is challenged.  Above 9 would indicate better than average short-term recall.

I’ve been to my first face-to-face cognitive testing for the University Alzheimer study I am participating in.   I’m in this study, not because I think I have Alzheimer’s or any other form of dementia, but because it is the only cognitive study that is available.  I want to evaluate my cognition.  Each time they test me, I learn new things about my cognitive skills and my challenges.

Short Term, or working memory is tested by seeing what a person can recall from information they are thinking about (‘attending to’) in the present moment.  Once attention has shifted, or been directed elsewhere, recalling that same information would be exercising long-term memory.

Want to try some short-term cognition exercises?  Just for the fun of it.  You’ll need a partner.

Have them write down three unrelated words, then say them to you slowly, distinctly and loudly enough.   Now you repeat as many of them, in any order, that you can recall.  If you are successful, and want a steeper challenge, boost the number of items by one and try it again. (And again).

Next, have your partner make a list of unrelated items and say them to you.  While they time you for 30 seconds, recall as many of the items as you can.  Repeat it a few times and notice whether you get better each time through or the result stays the same.  BTW, no self judgment allowed.  This is for fun.

In my study, the number of items I was given was 12 or 13.  They repeated the exercise multiple times.

Here’s one.   Your partner is to ask you to name as many items in a category as you can in 30 seconds.  EX:  Names of pieces of clothing, names of fruits or vegetables, names of cars, etc.  Are you having fun yet?   If not, do this again and extend the time period to 45 or 60 seconds and see if you have a different outcome.

Here’s another exercise to try.  Have your partner draw 6 shapes on a paper.  They should be kept quite simple, but some drawings should be a combination of shapes – EX: A triangle interconnecting with a circle.  Or an arrow with a few intersecting lines to complicate the image a bit.  Your partner should display them to you for 10 seconds, then remove the paper.  Your job is to recreate those images with pen on paper, preferably in the same order, on your the page.   I suspect you will want to repeat this a few times.   Is 10 seconds too restrictive?  Try viewing the images for a longer time.  Think of this as a game, not a test.

Last exercise.  This is to get a response from your long-term memory.  Your partner is to ask you to say those 3 (or more) words they gave you at the very beginning.

How did you do on these exercises (games)?   Did you enjoy the process?   Please come back to this post and let us know in the Comments.

MY RESULTS:

I did pretty well – on items that were in a category.  By contrast, I was starkly challenged by the exercise of recreating the shapes.  I was given this exercise several times.  At the first try, I totally stumbled.  With each repetition I improved.   This was the only exercise that stressed me.   The rest were 100% enjoyable.

I’ll begin with this disclaimer:  There is no scientific data at present to tell those of us with ME/CFS & Fibro just what, if any, pathology is accumulating in our brains to impact our cognition skills.  Nor are there preventions or interventions re cognition symptoms that have been scientifically tested for our group.

Even so, I’m finding a great deal of information re cognition studies conducted for other groups.   On the chance these findings can be used successfully by us, I am reporting to you.

Here is a study result that was aired on NPR.  It is sensible and hopeful; and it is something I have applied in my life to good result.

Having a purpose in life seems to be protective of our brain. 

Purpose.  Isn’t that one of our dearest treasures that illness has ‘robbed’ from our lives?

I have reported before that I planned the early decades of my adult life so that I would be able to follow my passion — writing — in my later years.   I postulated early on there would be no money worries, no entanglements, no looming health issues.   I saw it as a crystal clear mental picture.   Age 55 was my target.

Surprise!  In 1997, at age 54.5, I got blindsided by illness.  Whatever your age, can you relate?

My beloved purpose evaporated into the ethers, replaced by the demands of basic survival and learning how to cope.   In fact, writing vanished so completely as a purpose that I did not even remember it had been one until just a couple of years ago.

So, not only was I robbed of my purpose, you could say I was also robbed of my consciousness.

I remember a specific recent day when my purpose to write nudged me, as if saying: “did you forget about me?”  Well, yes, I had.   With that, the ‘’Would-be Writer’’ started to resurface.

It was so ironic – because what came next was a bolt of awareness that my cognition challenges were advancing from the quirky, that I could laugh about, to the intrusive and worrisome.  I was no longer just throwing out burned pans, losing my car in parking lots, forgetting commitments, botching this or that – (I could go on).   I was up against serious deficits — particularly my failing short term-memory.

I recall saying to myself:  “you’ll never be able to write – you cannot hold onto a thought for the time it takes to reach for paper and pen, or get to the computer”.   I was losing my purpose all over again because of this illness.

This time it was clearly about cognition.  Were there things I could do to move aside this looming barrier?

Then I had an epiphany:  I should just start writing – anything: poem, essay, very short story, thank you note – to see if the rekindling and pursuit of purpose, no matter how tentative, would help my cognition.

I now realize, that for me, Purpose, whether cloudy or bright, intermittent or ever burning, is a powerful part of the engine that drives my cognition.   Finding a way to manifest purpose seems to be protective and restorative to my brain and most assuredly — to my soul.

Have you suffered the loss of any of life purpose as a result of your illness?  Have you found a way to incorporate some revision of it into your current life?   Have you experienced any relationship between purpose and your cognition skills and challenges? I’d love to hear from you.

No matter our individual set of symptoms, everyone in my ME/CFS and Fibro world considers cognition challenges to be a definitive factor of their illness.  Many of us place cognitive deficiencies right up there along side post-exertion-malaise, fatigue and pain.

My goal in this series is to take a layman’s look at this symptom and pass on to you the results of my reading, interviewing and experience in dealing with this ‘interference’.

A place to begin:  What do brain studies tell us about the cognition aspects of our illness?  Well, they tell us – nothing.  Apparently there are virtually no medical or psychological studies of our group.

Yet, there is abundant medical and psychological literature reporting on the subject.   Those with Parkinson’s and MS are two that have been studied.  But clinic research is primarily focused upon dementia, and almost exclusively upon seniors or mature adults.

We have to glean our information from these studies.   As you’ll see over the next weeks, some of the information, especially those factors thought to prolong or boost cognition, might translate to our group and be helpful to all ages.

Because I am a senior, I have two reasons to explore this subject:  My illness and my age.

The University of Utah is conducting a cognition study of seniors 65 and older who test in a “normal range.”  I signed on, being forthcoming about my health history.  The study will track the cognition skills of participants over a span of 2 years.

The qualifying interview/test took place over the phone.   Luckily, she couldn’t tell how nervous I was to undertake this step – again.

I still remember traumatic bits of the last, and only, time I had a cognition test — in the early years of my illness.  I have a feeling of unease as I think about it.

Then:  I could not recite the order of recent Presidents, nor name the Vice President serving in 1998.  I could not provide the date or name the day of the week.  Overall I performed miserably.  I left saying to myself, well at least I knew it was October and that I was in the coldest, windiest place on earth — Chicago.   Did I remember that Chicago was in Cook County?  I didn’t.

Present time:  I’m happy to say this time I did know the county in which I live and overall fared better.  Yes, I knew the President but nearly washed out when asked to recall the Vice President’s name.

I could see his face but, no name.  I took some deep breaths, and scanned my memory banks in a fury trying to visualize a time I had seen his name in a headline, or heard it spoken on television.  It finally ‘showed up’ in my ‘ear’:  Biden.  Fortunately, she did not ask for his first name because it was hours later when I said out loud to no one:  JOE.

I could feel my confidence soar when she asked me to call out as many items as I could of a particular class of thing.  I applied visualization skills that I have been learning for the last few years.

An example:  Had I been asked to call out the names of flowers, I would have imagined myself walking around my garden, naming those flowers I had planted there.

Another:  If I had been asked to name articles of women’s clothing, I would have visualized my closet and open dresser drawers, calling off what I saw mentally.

The good news:  I did qualify as ‘normal.’

Full disclosure:  I barely squeaked by on short-term memory questions.  It went like this:  She said:  “I’m going to say 10 words (all unrelated).  When I’m done, I want you to repeat as many of them as you can recall within 30 seconds.”  Deer in headlights!

Using every second allotted me, I finally named enough to qualify.   Phew!

If you, or someone you know, is 65 or older and interested in talking to someone about this study conducted by Dr. Kevin Duff, contact his assistant, Danielle, at 801 587-7201.

This cognition study, like every other one I know about, has nothing to do with our illness; it is solely age-related, about dementia.

Since this continues to be the direction of national and local funding for cognition study, my layman’s ‘research’ goal is to determine if there is any knowledge and/or cross-over benefits applicable to those of us with ME/CFS & Fibro.

Would you like to share support with fellow patients from around the world?

Join those of us at OFFER who have completed the Introductory CFIDS Self-Help Course.   It is a very doable, 6-week, on-line course where you can learn practical skills for managing ME/CFS & Fibromyalgia.

This self-help course is offered four times a year.   Enrollment for the September 12^th  Class closes on September 5^th.  (The next class will begin January 10, 2012,).   All registration instructions are on the website: http://www.cfidsselfhelp.org.

You will receive the course test, Managing Chronic Fatigue Syndrome and Fibromyalgia:  A Seven-Part Plan, by mail, at no additional cost.  When you graduate, you will be invited to join the Alumni group at no additional charge.  Other courses are offered when you have completed this initial course.

The Course Tuition for US & Canada is $33.99, ($30.00 for the class and $3.99 for shipping and handling).

The author has intended this class to be affordable for most applicants.  However, if you are prohibited from enrolling because of the tuition, OFFER might be able to help.  We are offering a few qualified applicants  a 50% scholarship.

Qualifications:  1) Financial need.  State your family income for the last year; 2) A high certainty that you will complete the 6-week course; 3) Write a short essay (15-30 lines maximum) stating successful strategies you use in coping with your illness.

Scholarship Submittal:  Go to our email: info@OFFERUtah.org.  Put “Course Scholarship” in the Subject Line.

A limited number of scholarships are available.  Our deadline for receiving your scholarship application is Saturday, August 27th.   We will make our decisions by August 31^st and notify you by phone and or email immediately so you can enroll in the course.  Be sure and include your most reliable contact information.

Good Luck.

Have you been riding the  XMRV rollercoaster?  Well, hang on because it’s not over yet.

Soon to begin is the investigation, expected to be definitive, conducted by viral super sleuth Ian Lipkin, MD, Professor of Epidemiology, Neurology and Pathology at the School of Public Health at Columbia University.

Lipkin has been hired by the National Institutes of Allergy & Infectious Diseases to give XMRV standing as a virus affecting humans, or put it to rest as a matter of contamination.   He is an excellent choice, with superlative credentials and an agnostic view.  Results will be available the end of 2011 and reported here.

He and his team have been called upon many times, the world over, to discover pathogens and determine causation.  He developed a technology used to identify and characterize more than 400 viruses.

In the matter at-hand, Lipkin has been charged to answer two questions:  Is XMRV present in the human population?  If so, is it particularly associated with CFS?

New samples will be collected from six USA clinics, one of which is the Fatigue Consultation Clinic, in Salt Lake City, directed by ME/CFS & Fibro specialist, Lucinda Bateman, M.D.

All new samples for the Lipkin study will be collected in the same time period, by the same staff and handled uniformly, using the same reagents, tubes, vials, needles, extraction procedures, etc.  These unified standards will eliminate variables that have thrown some earlier studies results, that netted positive results, into question.

It is unlikely the Lipkin team results will satisfy all affected scientists, ME/CFS patients and their clinicians.  But dare we hope that – regardless of the outcome — it will serve to focus more dollars and research talent upon finding cause(s), effective treatments — even cures and prevention strategies — for this severe, life-altering illness?

How has the whole XMRV matter affected you personally?  Did it discombobulate your world?  Will you be satisfied with the Lipkin outcome, no matter what it is?  I’d like to know.  Please share your thoughts.

One New Trick Leads to Another.

Pace, Pace, Pace.   How often have you heard that!

Here’s the thing:  Successful, on-going pacing requires information — information about activity, symptoms, fatigue level, etc.  I get that information by periodically analyzing my Activity and Sleep Logs.  (See Part I.)

Patterns emerge.  Some leap right off the log page.  Here’s my result:  Logging has lead me to a new trick –

Pacing that Works.

*  Each week the salsa I make (fresh from my garden) requires a lot of veggie cleaning, dicing and blending.  Because it is a labor-intensive, strenuous activity, I’ve made it a 2-day project.  Before I settled on this pacing solution (by paying attention to my logs), I was ready to bag the whole thing and head straight to the nearest salsa aisle.

*  If I’m doing more than one load of laundry, it helps me to stay downstairs and either lay down or work on a jig saw puzzle I keep set up for relaxation.  While weekly laundry is a moderate activity for me, up and down the stairs repeatedly is strenuous. 

*  My computer time, these days, is less likely to bust my energy budget.  I make an effort to separate email from blogging, from brain fitness, from on-line classes, from research etc.  My logs told the story.   I had been routinely going from one computer activity right into another.  Now, I separate these, watch the time, use rest periods and spread computer activity across the full day.    (I struggle to keep my computer activity sensibly paced.)   

*  I can now safely drive for an hour at a time, for a total distance of up to 300 miles a day.  It requires that I pull off the highway to rest for 15-20 minutes each hour and do some serious resting upon arrival.  A small price.  Paced driving has restored my love of traveling alone.  

*  Logging revealed that meal prep, clean-up, followed by the whole “do-the-dishes, tidy-up-the-kitchen” chore was exhausting and raised my pain level.  I was starting to choose my meals based solely on  the least amount of  effort and clean-up — forget nutrition.

Now I divide it into doable pieces.   Eating fresh and preparing simple foods into more than one meal are key.  I love my freezer.  I also have a sun oven.  I can throw a meal in it and walk away.  The sun does the work.  No more burned pans.  

Meal clean up begins with packaging any leftovers.   Clearing the dishes, wiping surfaces, etc., comes next.

Soaking the dishes is always my signal to take a rest.   When I have another little spurt of energy, I wash the dishes (maybe only once a day).

Putting dry dishes away comes at the end of the day and is actually part of my rote Evening Routine.

*  I have discovered that how I sequence activities is as important to my well-being as the activity itself.  For example, after any exercise, I need rest.  I know it; I trust it.  However, if I mess up and allow myself to get sidetracked — oh, let’s say by garden weeds calling my name — I am assured a poor outcome for that night and probably longer.

It goes south very fast from — “I’ll just yank out these few” on my way to the back door.  The pulling begins and before I know it, those ‘few’ weeds have morphed into the many and I have busted my pacing.

*  Here are a few other things I cannot do sequentially:  Grocery shopping followed by putting it all away; bathing and shampooing/drying/styling my hair in the same personal care activity; changing bedding, then following it up with laundry.

*  Cleaning out the refrigerator can put me in a Home if I don’t pace it correctly.  It absolutely warrants it’s own day, sometimes two.  It cannot be preceded or followed by anything other than serious rest.

My energy/fatigue level at the end of a day is a reflection of how well I:  paid attention to and respected my body; paced activity; sequenced activities; and, rested, rested, rested.

Has pacing made a difference for you?  Care to share some of your successes?   This old dog is always open to new tricks.

NOTE:  Come out to the OFFER education meeting on Wednesday, August 3rd, 7:00pm. Annie Leppert and I are going to share some of the benefits we gained from taking the CFIDS Self-help Course line-up by  Bruce Campbell, Ph.d.  (See last series of blog posts.)

Did you know that Dr. Campbell is working on an Introductory Self-Help Class for OFFER?   And that  Stuart Drescher, Ph.d and his associates, are planning an in-person, follow-up group for class grads?  How lucky are we!