May 09 2008

Take Part In CFS Virtual Lobby Day

 Monday is CFS Awareness Day and you can take part by participating in the CFIDS Association 5th Annual Virtual Lobby Day.  Join thousands of advocates taking action to build a stronger federal response to CFS. In less than 30 minutes you can write to your U.S. senators, the secretary of health, your representative in the House of Representatives, CDC Director Dr. Julie Gerberding and NIH Director Dr. Elias Zerhouni. Last year more than 6,000 messages were sent by Virtual Lobby Day participants.

There are five different activities that you can complete on the GrassRoots Action Center website. These include:

  • Action Item # 1 - Inform your senators about the CFS briefing on Thursday
  • Action Item #2 - Urge the Secretary of Health to act on recommendations
  • Action Item #3 - Write to the U.S. Representative elected by your community
  • Action Item #4 - Hold the directors of the NIH and CDC accountable for CFS funding
  • Action Item #5 - Ask your local media to raise awareness

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May 09 2008

Weekly Posts from Chronic Health Blog

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  • Researchers believe they may have found a new form of treatment that will help depression - a brain pacemaker.  Two large, lengthy and in depth studies have shown that a brain pacemaker can treat depression as well as obsessive compulsive disorder.

Manic Monday: Brain Pacemaker for Depression

  • Recent research has found that the use of sunbeds during a person’s teens and twenties is linked to an increase in melanoma risk, the deadliest form of skin cancer.

Tanning Bed Use Linked to Skin Cancer

  • The Skin Cancer Foundation’s Road to Healthy Skin Tour kicks off this month to help promote National Skin Cancer Awareness Month.  The Road to Healthy Skin Tour that is sponsored by Rite Aid and Aveeno will tour the country offering free full body skin cancer screenings. 

Skin Cancer Foundation’s Road to Healthy Skin Tour

  • Skin cancer is growing more and more common and getting the facts out there and raising awareness is so crucial if our country wants to get a handle on it.  What is really sad is that skin cancer is diagnosed more than any other type of cancer, yet it is the one cancer that is the most preventable. Here are some facts about skin cancer that will shock you.

Facts About Skin Cancer that Will Shock You

  • A recent research study found that men are more than 1 1/2 times likely than women to suffer from cognitive difficulties. 

Testosterone Tuesday: Men More Likely To Develop Cognitive Difficulties

  • I will always stand by my conviction that tanning beds and sunbathing are dangerous and if you need more proof, read some of these personal blogs from melanoma victims.  Some of these people are dead, some their spouses keep up the websites and others are survivors.

Personal Skin Cancer Blog and Websites

  • There are four different categories for melanoma.  Three of these types of melanoma begin in and live in the top layer of the skin - in situ - that can later become invasive.  The fourth type of melanoma is invasive from the beginning. 

Types of Melanoma

  •  A new study revealed that heart attack symptoms in women under the age of 55 get missed or dismissed.  The study included 30 women who were under the age of 55, with an average age of 48, who previously had heart attacks. 

Wonderful Women Wednesday: Younger Women Miss Signs of Heart Attack

  • It used to be the standard for detecting melanoma was using what dermatologists called the “ABCDE” acronym.  This has been a great method to detect melanomas, but there are some melanomas that do not display the typical “ABCDE” signs.  Because of this, specialists have created a new method for sight detection of melanoma - the “ugly ducking sign”.

Early Detection of Melanoma

  • According to the American Cancer Society,  most of the more than 1 million cases of non-melanoma skin cancer diagnosed yearly in the United States are considered to be sun-related.

Skin Cancer Risk Factors and Prevention

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May 09 2008

Guest Blogger Post: Focusing on Pain

Published by Sandy Robinson under Coping Corner, Pain

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Please welcome Abigail Steidley, owner of The Healthy Life, LLC  Life Coaching Services and blogger of The Vagina Dialogues as guest blogger for  another week! 

When you’re in pain, it can be difficult to think about anything else. Pain becomes the boss, dictating what activities you choose, how much you enjoy or don’t enjoy life, and how you feel mentally each moment of the day. It’s no wonder that chronic pain sufferers tend to end up depressed, unhappy, or hopeless, because pain overshadows every moment of their lives.

Most pain sufferers focus their thoughts on what it would be like to live without pain. I remember this clearly from my own battle with chronic pain. I spent much of every day thinking about how happy I would be without pain. I dreamed of living normally, of just doing activities without even having to consider pain. I imagined myself living a fulfilling, joy-filled life, all because pain was not present. Now, I have that life. I live it every single day – day after day of no pain. Do I relish the joy of living without pain? Do I think often about how wonderful it is to live without pain? Truthfully, no. Every so often, I feel immense gratitude for the life I have now, but other than that, I think very little of physical pain or how it used to feel in my body. I am too focused in the present, living my current life, to remember the pain.

Ask any mother to remember the physical pain of childbirth, and she’ll pause, think, and tell you she’s forgotten what it felt like. It’s difficult to remember the physical sensation of pain once it has left your body, for which we can all be thankful. However, if you take a minute to really consider pain from this perspective, it can be extremely enlightening. Though pain is felt in the body, it actually exists in the mind. Without the mind to tell me I am in pain, I would experience pain as only another sensation - like a breeze against my skin or the tickle of sweat between my shoulder blades.

When I was dealing with vulvodynia and IC, I felt a rotation of symptoms including burning, sharp pain, dull aching internal pain, and itching. My doctors would often request that I rate my pain on a scale of one to ten, and after a while, I automatically rated my pain throughout the day. My attention was completely focused on my pain all the time. After months of this, I began to notice that when I was distracted and not paying any attention to my symptoms, I couldn’t rate them. I couldn’t put my finger on a number from one to ten because I wasn’t paying attention.

Which begs the question: If I didn’t notice the pain because I was distracted, was I feeling any pain? The answer was no. When my attention truly left my pain, when I allowed myself to let go of the rating system and not check in with my pain, it simply didn’t exist. Why not? Because pain is actually experienced in the mind. It is a complex, fascinating, and absolutely freeing concept.

I wasn’t able to completely let go of all my pain. Often, it would intrude into my distracted state and bring me back to a pain-focused state. Simply realizing that my focus made the pain stronger, however, was a very helpful idea. I let down my vigilant guard whenever I felt safe and let myself focus on other aspects of my life. I let myself stop wishing for a happy future and brought my attention to happiness available to me in the current moment. I let myself experience distraction from pain as often as I could. The less I focused on the pain, the less I felt pain. The less I felt pain, the happier I felt. It was the opposite of the other cycle, in which the more I focused on pain, the worse I felt, both mentally and physically.

Playing this mind-game with pain helps open your experience up to include more happiness, more joy, and more pain-free moments. There is no need to look to the future for hope – find the good feelings now and bring the future into the present, one moment at a time. Recognize that pain is simply a sensation. It does not have to become the boss and take over your life. You are still in charge.


Abigail Steidley
The Healthy Life, LLC
Life Coaching Services
abigail@thehealthylifecoach.com
www.thehealthylifecoach.com

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May 08 2008

I’m Experiencing Weird Symptoms - Something Feels Wrong

Published by Sandy Robinson under My Journey

I started experiencing some weird symptoms on Wednesday night.  I sat down to work on a post for this site and I couldn’t see very well.  It reminded me of when you are out in the sun then come inside - that weird thing your eyes do that make it hard to see initially after coming in.  But I wasn’t out in the sun.  Then last night I couldn’t sleep.  I slept maybe three hours.  That’s not a weird symptom for me though.  Today I was not good all day and my head was hurting extremely bad.  I tried to sleep on and off throughout the day but I was only able to take short 15  - 20 minute naps. 

When my husband came home around 5:30 p.m., I could tell that my blood pressure was high and I started having trouble talking.  My speech sounded slurred and it was difficult for me to talk.  It is after 8 p.m. here now and I notice that my vision is weird again and I am still slurring when I talk.  I feel totally miserable.  I’m going back to bed…

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May 08 2008

Two Athletes With CFS Dream of Olympic Gold

Two people who have Chronic Fatigue Syndrome are pro athletes and have their sights set on winning an Olympic gold medal.   Imagine having CFS with the fatigue and post-exertional malaise and then being able to be athletic and train to make it to the Olympic games?  That is hopeful for those with CFS who poop out after walking to the mailbox or taking a shower and feel that they will never be able to do any better. 

It would be nice if this was possible for all of us with CFS but reading stories like this gives me hope and makes me happy for those who have managed to somehow recover from CFS.  The fact that both of these people were extremely athletic before they became ill is probably what aided in their recovery.

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Canadian wrestler, Ari Taub, was diagnosed with CFS in 2000 and had to give up his career as an associate lawyer for a Canadian law firm.  He would get up in the morning to take the trash out and collapse from exhaustion.  Sound familiar?  Taub also had a narrowing of the spinal canal in his neck that had caused him to quit wrestling before or end up as a quadriplegic if he continued the sport.  While he was being treated for CFS, Taub was informed that his spinal canal was no more susceptible to injury than anyone else’s, meaning he could return to wrestling.  After a 10-year absence he made his comeback and is working hard at his sport. 

The 37-year-old wrestler has qualified for the Beijing Olympics in Greco-Roman wrestling after a number of failed tries and with little funding.

Read more about Ari Taub’s journey to make it to the Olympics

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Anna Hemmings, a flatwater canoeist and former Olympian, was diagnosed with CFS in 2003 and everyone thought her career in sports was over. Anna went from being a world-beating athlete to someone who would fall asleep at the dinner table and couldn’t find the strength to wash her hair.

Anna, now the most successful female canoeist in Britain, says that she used a form of alternative therapy is responsible for her miraculous comeback.  Anna tried something called reverse therapy, an alternative treatment that works by using psychological techniques to change the behavior of a gland in the brain that is thought to be at fault in CFS sufferers.  She had her first treatment in September 2004 and by the end of 2005 she had reclaimed the world marathon championship title.

Read more about Anna’s return from CFS to compete for the Olympics

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May 07 2008

Is CFS Caused By A Rare Brain Infection?

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The cause of CFS still eludes researchers but they continue to strive to find the answers to the mysterious disabling illness.  In the Medical Hypotheses, (Apr 24 2008 [E-publication ahead of print] PMID: 18440157) by Grinde B. National Institute of Public Health in Norway, it is suggested that maybe CFS is caused by virus that is normally benign in most people - a circovirus. 

Circoviruses are chronically present in most people but these are rarely tested for by physicians.  As a rule, these viruses do not enter the brain but exceptions have been reported, and related viruses cause disease in animals’ central nervous systems.

The flu-like illness that often precedes the onset of CFS may either suppress immune function, causing an increased viremia, and/or lower the blood-brain barrier. In both cases the result may be that a virus already present in the blood enters the brain. It is well known that zoonotic viruses typically are more malignant than viruses with a long history of host-virus evolution. Similarly, a virus reaching an unfamiliar organ may cause particular problems.

Zoonotic viruses are viruses that are transmissable from animals to humans.

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May 06 2008

Latest Research With Exercise Limits on CFS Patients

Research was conducted recently to determine if exercise limits can prevent post-exertional malaise in CFS patients. The theory was that the use of exercise limits prevents symptom increases and worsening of the patients health status following a walking exercise in people with Chronic Fatigue Syndrome.

The clinical trial (see full study report at this link) used walking exercise and exercise limits with 24 CFS patients:

Walking was chosen because it is a mode of exercise which is functionally relevant, easily applied in the clinical setting and frequently used in exercise therapy for people with chronic fatigue syndrome.

1,2 Prior to thewalking exercise, the patients were asked to indicate how long they would beable to walk on a flat surface without increasing symptoms, and whether theywere currently experiencing a good or a bad day. In order to account for
typical overestimations, the patient’s estimated exercise duration wasreduced with 25 of 50% in case of a good or a bad day respectively. This wasused to limit the walking duration. In addition, the exercise intensity waslimited using an upper heart rate limit corresponding to the RER=1.0 (derivedfrom the submaximal exercise stress test). Heart rate was monitored
continuously during exercise using a Polar Accurex Plus (Polar Electro OY,Kempele, Finland). The heart rate corresponding to RER=1.0 was entered in theheart rate monitor as the upper limit. The patients were asked to walk on aflat surface and in a straight line from one marking spot to another (the twomarking spots were placed at a 10 m distance). The patient was instructed towalk at a steady pace, not to talk or to stop walking during the exercise,
and to decrease the walking pace if the alarm went off (i.e. when the heartrate increased above the upper limit). The investigator recorded the walkingdistance and the number of times the alarm sounded.

The CFS study patients participated in a walking test with the two concurrent exercise limits. Each PWC walked at an intensity where the maximum heart rate was determined by heart rate corresponding to the respiratory exchange ratio=1.0 derived from a previous submaximal exercise test and for a duration calculated from how long each patient felt they were able to walk.

The fatigue increase observed immediately after exercising returned to pre-exercise levels 24 hours post-exercise. The increase in pain observed immediately after exercising was retained at 24 hours post-exercise. Fourteen of the 24 subjects experienced a clinically meaningful change in bodily pain; 6 indicated that the exercise bout had slightly worsened their health status, and 2 had a clinically meaningful decrease in vitality. There was no change in activity imitations/participation restrictions.

It was shown that the use of exercise limits (limiting both the intensity and duration of exercise) prevents important health status changes following a walking exercise in people with chronic fatigue syndrome, but was unable to prevent short-term symptom increases. [Note: additionally, the authors noted that “The results for a minority of the subjects studied here support the notion that the exercise intensity necessary to cause a symptom increase can be quite mild…” that many subjects overestimated their exercise limits, and that study of other exercise limits to prevent worsening of ME/CFS symptoms & health status in response to exercise is warranted.]

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