Bergen
CFS Support Group Newsletter
February
2006
Vol. III, Issue #26
Bergen
CFS Support Group Newsletter
Meeting
Report
The meeting was held on
Sunday February 19th. Bitter
cold did not deter the group that gathered to view Dr. Cheney’s portion
of the NJCFSA Fall 2006 conference. Titled
“CFIDS and Diastolic
Cardiomyopathy”,
it is a revealing look at the advances in CFS research and the
discovery of cardiac issues in the CFS patient. For
those who might be interested in viewing the video, it is available at
the NJCFSA website (www.njcfsa.org). Members can borrow it for a small shipping fee. Purchase information is available at that site. For those who do not have internet access
please contact the NJCFSA Hotline at 888-835-3677 (during
business hours) for more information.
Just for Fun
Our social director, Frank Kawa, has set a
date for another luncheon. It will be at
the Westwood Diner on Wednesday March 1st. (Ash Wednesday.) The Westwood Diner Pancake House is on
Conference Video
Conference DVD Available
for purchase
The NJCFSA
Fall 2006 Conference that featured Dr. Paul Cheney, Dr. Susan
Levine, Dr. Sanjay Mathew, and author Shanon McQuown is now
available on DVD for the price of $15.00. To order please contact
NJCFSA librarian, Betty McConnell at the following: Bettymc28@comcast.com or see the information above.
Research
This article comes from www.co-cure.org. John Herd is a CFS
patient and advocate.
Cognitive Testing of ME/CFS May
Be Missing The Target
by John Herd
In 1992 I approached Dr. Sandman (1) at an ME/CFS conference about a
computerized method I had used for evaluating my cognitive status. Dr. Sandman developed a series of computerized
measures of memory skills for assessing brain dysfunction with which he
found significant cognitive dysfunction in ME/CFS patients in the early
90s. Dr. Sandman felt that both the
temporal lobe and the hippocampus were involved in ME/CFS.
He wrote in an article, "The performance of the CFS patients was
sevenfold worse than either the control or the depressed group."
When Dr. Sandman saw my data he said, "You are getting better data than
I am getting from my million dollar lab." When
Dr. Anthony Komaroff saw the data he felt the work should be written in
a grant proposal so further study could be conducted.
As odd as it seems, I had used scores from the computer game
Tetris along with numeric ratings of how I was feeling cognitively,
physically, prior physical activity, etc. I logged the data 4 times a
day for a period of approximately 2 years. (Note: Symptom levels,
activity and stress data was recorded prior to playing each game so the
Tetris score would not risk imposing a bias when recording how I was
feeling.) This would not be the only time
the Tetris computer game would be used for neurologic research. In 2000
Dr. Robert Stickgold from
The reason I chose to use the computer game is that I had noticed my
scores were considerably lower after I contracted ME/CFS than before by
almost 50 percent. After contracting ME/CFS I noticed that my Tetris
scores appeared to correlate with how I was feeling cognitively and
physically. After illness onset I also noticed that on bad days or
times my Tetris scores were often as much as 75% lower than on good or
even average ME/CFS days. When I ran the
data I collected through a statistical package some of what the results
revealed were to be suspected and some were a surprise.
The data quantified that:
* When I was feeling better the Tetris scores were higher, when
feeling worse the scores were lower;
* That the numeric value of the Tetris scores correlated with the
degree of ME/CFS symptomatology;
* That the Tetris scores correlated with prior higher levels of
physical activity and/or stress;
* That the Tetris scores correlated with my apparent circadian
rhythms (better and worse times of the day).
What was unexpected was that when I washed the data to remove the
spikes from increased activity and/or stress there appeared to be an
underlying regular cycle of ME/CFS symptomatology. Doctors Sandman and
Komaroff suspected this may be the case with female ME/CFS patients due
to hormonal influences, but their research had not revealed a similar
pattern male ME/CFS patients. They were both very curious.
I suspect if I had been able to impose sensory distractions when
using the Tetris program that this too would have influenced the scores.
While advancements have been made in cognitive testing, I believe such
testing still has its shortcomings. ME/CFS patients singularly focusing
on a single task without distractions appear to do relatively well. But
when auditory, visual and activity distractions are imposed so that
cognitive multi-processing is necessary it is a very different story.
As an example I again use myself. If I sit in a conference session and
only listen to the speaker I can retain the information fairly well. If
I try to take notes at the same time I can neither take legible notes
nor even keep up with what is being said or absorb what I am hearing.
And if there are people moving or talking about me I experience
additional cognitive disconnect.
From what I have read in the ME/CFS research literature, current
methods of cognitive testing do not involve such types of multi-sensory
distraction that require cognitive multi-processing. Though researchers
likely have better instruments than the Tetris game for testing the
some types of
cognitive impairment, I suspect the inclusion of multi-sensory
distraction must be incorporated into cognitive testing to reveal the
magnitude of cognitive deficits in ME/CFS. Such testing may also be
useful in defining a subgroup of ME/CFS patients or differentiating
ME/CFS patients from controls and those with other conditions.
(1) Curt Sandman, Vice Chairman, Department of Psychiatry and Human
Behavior, University of California, Irvine and Chief of Research, State
Development Research Institute
(2) Robert Stickgold, Harvard Medical School, "Researchers learn to
control dreams, They gain understanding of sleep/learning links",
http://www.sciam.com/article.cfm?articleID=0001F172-55DA-1C75-9B81809EC588EF21
_____________
Copyright, John Herd, '06
johnherd@johnherd.com
Personal
Story
Chronic fatigue
syndrome (CFS), sometimes called the 'mystery condition' has left
medical experts baffled and sufferers with little hope of a cure.
However, professional rower Anna Hemmings claims that a new treatment
called 'reverse therapy' helped her recover from the illness.
Anna Hemmings
was used to feeling tired and experiencing aching muscles due to her
grueling training schedule as an Olympic rower. But, she says, the
exhaustion she awoke with one morning four years ago was not the result
of exercise.
Anna: "This
didn't feel like the consequences of a hard training camp or as most
people presumed 'over training' - it felt like it was more profound
than that. What exactly I didn't know and neither, it turned out, did
most professionals in the industry!" Her situation will be familiar to
anyone who has had the misfortune to be diagnosed with CFS, also known
as myalgic encephalomyelitis (ME), myself included.
There is
currently no method of positively diagnosing the illness (although the
possibility of a simple blood test has recently been researched) and
doctors have not been able to offer any cure other than rest, graduated
exercise and antidepressants.
However, Anna is
now not only back on her feet again, but back on the winner's podium -
she reclaimed her world crown in Perth, Australia, last year and she
puts her amazing recovery down to a new treatment called 'reverse
therapy'. Developed by British psychotherapists, Dr John Eaton and
David Mickel, this treatment is based on the premise that CFS is a
'bodymind' condition, i. e. a physical illness with a psychological
root.
The problem is
thought to stem from the brain's hypothalamus, a pea-sized area of the
brain which reacts to emotional stress by overworking the adrenal
glands, in turn causing muscles to burn up too much glucose, causing
severe fatigue and pain. Known as hypothalamitis, this can eventually
result in chronic fatigue. According to the pioneers of reverse
therapy: 'If external pressures go on too long, then Bodymind, working
through the emotional brain creates a 'chemical memory' about the
threat. Each time situations come up that are associated with the
problem, the chemical memory is activated and the hypothalamus places
the body on 'action stations' and send symptoms to warn the person that
he/she is under threat.'
Reverse therapy
works by convincing the hypothalamus that the emotional problems have
been dealt with and external pressures - or 'triggers' - have been
removed. This is achieved by creating a balance between time for 'me'
and time for others; sharing burdens and expressing your emotions to
other people instead of trying to conceal your feelings; learning to
overcoming any shocks or traumas you have experienced in the past, and
knowing when to ask for help or support when you feel under pressure.
CFS is
particularly common among high achievers and, through her own
experiences, Anna can now understand why this might be. She says: "In
order to be successful as an athlete you need to be vigilant, to be
constantly checking and re-checking that you are doing everything that
you can to achieve your goal. I thought I was being vigilant and was in
tune with my body but I was ignoring some seriously bright flashing
lights.
"There were
alarm bells going off all over the place; my body was crying out to me
to make some changes, in particular to get a bit of balance in my life.
But I didn't listen and my body's way of speaking even louder was to
give me the symptoms. It wasn't until I fully embraced reverse therapy
that I discovered what my triggers were and my symptoms started to
improve. I am delighted to say that things have gone from strength to
strength since then." Trials are due to begin on the treatment shortly.
Lobby Day
2006
For
those who have the stamina to participate, this is an incredible way to
reach out to the members of Congress in a face-to-face request for
support for CFS. For those who cannot
attend, please consider using the www.cfids.org website Grass Roots Action icon to show your support.
This
is from www.cfids.org
Join
us in
May
8: Training Session
On
the afternoon of Monday, May 8, a mandatory training session will
prepare all lobby day advocates for meetings on the Hill. Tom Sheridan,
the Association's
First-time
advocates will be matched with veteran lobby day participants or
Association staff for their meetings on the hill. By the end of the
session all advocates will feel confident with their messages,
comfortable with Capitol Hill and secure in their right to be heard.
May
9: Lobby Day
When
registering, advocates choose whether they prefer morning or/and
afternoon appointments and whether they wish to do a heavy schedule or
one that's light. The Sheridan Group and the Association schedule all
Hill meetings, targeting members of Congress who serve on committees
that determine medical research funding and set health policy. We also
reach out to newer members of Congress and those who represent lobby
day advocates. In recent years advocates have met with a total of 70-85
key legislators on this single day – a major achievement for the CFIDS
community and personally rewarding to the individuals who take part. We
celebrate the victories large and small with a reception that evening,
also a chance for advocates to share experiences and form or renew
friendships with others committed to the cause.
Please consider
joining us for this year's event. We recognize that for many people
affected by CFIDS, limitations imposed by health, strained finances and
other responsibilities make it impossible to consider traveling to
Info
Revisited
CFS,
FM, ME & related illnesses Newsletter Now Available!
The CF-Alliance now offers their FREE quarterly
full color international Chronic Fatigue Syndrome, Myalgic
Encephalomyelitis, Fibromyalgia & their related illnesses
newsletter via email (text only). Each newsletter offers health news,
coping tips, worldwide resources, book reviews, personal stories &
contests!
*If you would like to receive the newsletter in text version
via EMAIL, please send your name and email address to: newscfa@yahoo.com.
Next Meeting
The next scheduled meeting
will be on Sunday March 19th. We will show the Q & A segment follow-up
to Dr. Cheney’s conference video presentation of this month as well as
open discussion time.
This newsletter is intended for CFS patients in the area of this support group. The purpose is to share information and support. If you have questions about meetings please contact Group Leader Anne at annielaurie617@yahoo.com. Subscription problems: Nancy Visocki at nvisocki@verizon.net. Editor: Pat LaRosa at pat@larosas.net.