February 2006

 Vol. III, Issue #26

Ribbon          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 Old Hook Rd, in Westwood, just east of Pascack Valley Hospital.  The group will be there from 1:30 PM until about 3 PM.  If you are interested, call Frank so he will save enough spaces.  He can be reached at 201 768-4111.


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.



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 Harvard Medical School published an article on using the game to study sleep/learning links. (2)

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",
Copyright, John Herd, '06

 Personal Story

Anne came across this article and thought some of you might like to read it.  The concept of reverse therapy seems very similar to the positive techniques used by so many of our members as well as the topics we have presented at many of our meetings. 


Anna 'Reverses' The Effects Of Chronic Fatigue

Rhonda Weir        Tuesday 7th February 2006


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 Washington, D.C. on May 8-9 for the CFIDS Association of America's 14th Lobby Day on Capitol Hill. Be part of the group that spends the day talking with lawmakers and their staff members about funding for CFIDS research, care and treatment centers, disability and education issues.

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 Washington, D.C., government relations advisor since 1992, will lead the session. He'll provide background on current federal priorities and up-to-the-minute issues that may affect discussions with members of Congress and actions they commit to take. Tom's associate, Michelle Nawar, will brief participants on the legislation we'll be trying to impact and how Capitol Hill staffers might use the information advocates present during these meetings. Kim McCleary, the Association's president & CEO, will describe how advocacy drives other initiatives important to the CFIDS community and will review talking points and congressional requests. You'll also hear from veteran lobby day participants about what to expect and will practice new skills with the people you'll be grouped with for appointments the next day.

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 Washington, D.C., so we are extremely grateful for the efforts and sacrifice that participants make to take part in this experience. As the date approaches, we'll have a "virtual lobby day" through CFIDS Link and our Grassroots Action Center http://capwiz.com/cfids/home, enabling those who can't be with us in Washington to augment the impact of what advocates are able to accomplish in person on Capitol Hill.

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.