Research Alert: U of New England, Australia - Fatigue Study

Text from the CFIDS Association Bulletin Board (i.e., posted items are not subject to review):

Project Title: Predictors of subjective fatigue in three samples: chronic fatigue syndrome/myalgic encephalomyelitis and multiple sclerosis patients and university student controls. Investigators: Rhonda Brown, PhD.; Einar B. Thorsteinsson, PhD., University of New England, Australia.

The purpose of this study is to investigate the relationship between fatigue, stress, anxiety, depression, viral infection symptoms, sleep disturbance, and a number of specific stressors, unhealthy behaviours, psychosocial factors, and cognitions. Fatigue often has a physiological basis (e.g. viral infection), but previous research has shown that fatigue also has psychological aspects.

This research is intended to help us better understand the way in which psychological factors impact on fatigue over a period of time. Participants will be asked to complete set of questionnaires three times (i.e., now, 6 months from now, and then 12 months from now).

If you are interested in participating in this study, or would like more information before you decide, please click on this link: http://www.surveymonkey.com/s.aspx?sm=sAu4Ep2exYGsdAW_2bc6UQMg_3d_3d

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, headache, brain fog, active eczema on left and right underarms, slightly achy lymph nodes in neck.

Mood (10 is best): 6
Energy (10 is best): 4
Physical Discomfort (10 is worst): 4

Research Alert: University of Utah Fatigue Study

Text from a fellow blogger's website:

Individuals who have had severe, unexplained fatigue for at least six months and who have no serious abnormalities on medical tests are wanted for a study of chronic fatigue. Patients who qualify for the study will be asked to complete three questionnaires over a six month period. Participating in the study will not alter the treatment that your physician gives you. The purpose of the study is to evaluate whether patients treated by certain types of physicians improve faster than patients treated by other types of physicians. If you may be interested in participating in this study, please contact the study coordinator, Kathleen O’Connor at (801) 587-4741. For more information email kathleen.oconnor@hci.utah.edu or visit our website at https://hci-as2.hci.utah.edu/CFSurvey/app.

Thanks to cfswarrior for bringing this study to my attention!

Today's Activities: home & evening work commitment. Today's Most Annoying Symptoms: exhaustion, mild headache, active eczema on left and right underarms, sore lymph nodes in neck.

Mood (10 is best): 6
Energy (10 is best): 4
Physical Discomfort (10 is worst): 4

Lack of support: Medical (Post by Kenny)

The following post is the first of several by my husband, Kenny. Thanks for reading! ~Alyson

***********

Ignorance, it is a pervasive mindset that transcends education, and is found at many different levels when it comes to the topic of CFIDS.

Too many doctors and nurses lack understanding or education of this illness; which adds to the frustration and hopeless feelings of those that suffer from such a formidable disease. This of course is not a problem if this ignorance is due to a new disease; unfortunately, CFIDS is not so new that all doctors and nurses should not be well educated up to the latest research.

Sadly, this lack of knowledge is due to many medical experts incredulity that there is something genetically, chemically, neurologically or a combination of these wrong with the individual. This leaves the person suffering from this life altering disease with feelings of doubt.

Before she found her current doctor, other doctors told my wife for years that she was just depressed (and nothing else), partying too much (she did not drink or party), staying up too late (Alyson slept almost 20 hours a day sometimes), not exercising (when she did work out, she crashed and slept for days), or the worst, “it’s all in your head”. This is unacceptable and should not be tolerated within the medical field.

Doctors and nurses have a moral obligation to be empathetic and educated on rare and common illnesses.

If you are in this field, don’t blame the people or make excuses for questions you can’t answer, instead do research or refer him or her to someone that can help. Please, don’t assume or guess what may be wrong. That is a complete insult to these people’s intelligence.

Research Alert (2nd posting): National Fatigue Survey - US Only

The other day someone from the Fatigue Management Institute visited my July 30 post, National Fatigue Survey (US only). Here is the comment he/she left on August 25:

Thanks for posting information on our National Fatigue Survey, and thanks to all who have participated. We will break out results by types of medical disorders, such as rheumatoid arthritis and chronic fatigue syndrome, if we have a large enough response rate. Please encourage others to participate, as the Survey will be available through January 31, 2010, and we are not yet reaching as many of the individuals who deal with fatigue as we would have liked.

Corinne Russell
Dr. Thom Harrell
Fatigue Management Institute

I responded with the promise that I would re-post the survey info. From this point on, I am copying and pasting from my original July 30 post.

**********
Rather than trying to summarize in my own words, here is the information directly from the website:

The Fatigue Management Institute is conducting a nationwide survey of what it's like to experience chronic fatigue. The purpose of the survey is to develop a better understanding of fatigue in chronic medical conditions and to improve treatments and techniques for managing fatigue.

We encourage you to participate if you experience significant or chronic fatigue. The survey takes about 20 minutes to complete. Your participation is completely anonymous. We do not ask for your name, e-mail address, or any identifying information. The information obtained will be used only to better understand fatigue and its management in chronic illness.

Our findings will be presented at professional meetings and in medical journals only as group data, and no specific individual information will be published.

Take the survey.

About The Fatigue Management Institute

The Fatigue Management Institute is an outgrowth of the fatigue-related research and clinical programs developed in the School of Psychology at the Florida Institute of Technology. The Institute serves as the focal point for integrating emerging research findings with techniques for day-to-day management of fatigue. The Institute conducts research on fatigue and fatigue management interventions, provides fatigue management training, and disseminates summaries of national and international research findings related to fatigue and its management in chronic medical conditions.

This survey is studying chronic fatigue in general (i.e., not specifically Chronic Fatigue Syndrome). I filled out the survey, and it took what felt like forever to complete it. Though I didn't time it, I'm not so sure I agree with that 20 minute estimation... Make sure you've got the stamina before trying to fill it out.

Thanks to Shelli for posting this survey the other day!
**********

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, mild headache, active eczema on left and right underarms, ringing in ears, uncomfortable intestines.

Mood (10 is best): 6
Energy (10 is best): 3
Physical Discomfort (10 is worst): 5

Advocacy Alert: Federal CFS Advisory Committee

This just in from the CFIDS Association:

Nominations for Federal CFS Advisory Committee Sought

Today's Federal Register includes an announcement soliciting nominations for five appointed positions on the Chronic Fatigue Syndrome Advisory Committee (CFSAC). The CFSAC provides science-based advice and recommendations to the Secretary of Health and Human Services through the Assistant Secretary for Health, on a broad range of issues and topics pertaining to CFS.

Vacancies will be created when five appointees' terms end on January 3, 2010. Nominations must be received by 5 p.m. EDT on September 20, 2009. The format for nominations is outlined in the Federal Register notice at http://www.cfids.org/advocacy/cfsac-nomination09.pdf.

The CFSAC members whose terms will be expiring in January are: Dr. James Oleske, Rebecca Artman, Kristine Healy, Dr. Morris Papernik and Jason Newfield.

For more information about the CFSAC, please visit the committee's web site at http://www.hhs.gov/advcomcfs/index.html or materials and meeting reports on the Association's web site: http://www.cfids.org/advocacy/CFSAC.asp.

The nomination process seems a little complex, but I have a couple people in mind that I would like to nominate with their permission (one is a doctor who specializes in treating patients with CFS, the other is a researcher who specializes in CFS research).

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, headache, mild vertigo.

Mood (10 is best): 6
Energy (10 is best): 3
Physical Discomfort (10 is worst): 4

Feeling Much Better Now

Thank you to everyone who posted words of support! I'm feeling much better now. Of course, I'm still as tired as ever, but my mood has improved greatly since the weekend.

After this Sunday's day-trip for work passed without a major crash, it felt like a weight was lifted off my shoulders. I think the anxiety I had about that trip was much more than I realized. I've also been steadily feeling better physically since my return from North Dakota. The viral symptoms (low-grade fever, sore lymph nodes and throat) have pretty much gone.

Work is still extremely busy, but I have started a different way of keeping track of all my projects. In the past, I have kept separate "To Do" lists for myself, depending on the individual project. I would try to write my lists of things to do in order of importance or priority. This took a lot of effort and brain power.

Now I just have one long "To Do" list that I add to whenever I think of anything I need to do, regardless of the project, its order of importance, or priority. It's much easier to not have to prioritize or rank order everything. I started this list on Friday, and it's already made a big difference in how I feel. I've even become more efficient in getting things done!

The fatigue is still a problem. I've been sleeping 9-10 hours a night on weeknights (and more on weekends), but it's not helping (no surprise there). On the upside, I'm feeling better mentally. Without mental strength, everything is 100 times as challenging...including physical healing.

Other thoughts on my mind...

• I'm still waiting to hear back from Georgetown and University of Illinois at Chicago. I'm starting to feel like I've been dumped. I haven't heard a peep from either research project. I suppose only time will tell if I'll be able to be a part of a research project.
  
  
• I have invited my husband Kenny to write a few blog entries about CFIDS to post on my blog. You'll start to see his posts from time to time in the next week or two.
  
  
• I really need to balance my checkbook.

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, pounding headache.

Mood (10 is best): 6
Energy (10 is best): 3
Physical Discomfort (10 is worst): 5

Feeling Down and Stressed

I've been feeling down since yesterday. (I haven't felt this down in a while.) I've figured out that there are a number of reasons why I'm feeling so blue.

• Work has been especially challenging. We had a big turnover recently, and I miss many of the people who have left. Because I don't have a life outside of work, my "work friends" are pretty much my only friends. I've also been more stressed at work than usual because I've had to take on more responsibilities and projects now that we are short staffed.
  
  
• My energy has not returned to my "normal" energy levels in what feels like forever (i.e., months). I'm wondering if how I've been feeling lately is my new normal. This possibility disturbs me. I have been considering the possibility that I will need to quit working or, at the very least, take a leave of absence if my energy levels get any worse.
  
  
• I've been feeling physically yucky (more than usual) since my trip to North Dakota last weekend. I do not regret going, but I am wanting some relief. I have managed to ward off a major crash and I feel better today than I did a few days ago, but I am still quite uncomfortable.
  
  
• I have to take a day trip out of town tomorrow (Sunday) for my job. I am not looking forward to it because I am still physically exhausted and trying to recover from my trip last week. I really hope this excursion doesn't set me back too much. I'm feeling a lot of anxiety about this.
  
  
• And, of course, I've been singing the usual woebegone song of CFIDS/CFS/ME sufferers: I'm sick of being sick, and tired of being tired. Also, I'm sick and tired of being sick and tired.

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, headache, nausea, explosive diarrhea, intestinal discomfort, asthma attack, feeling down.

Mood (10 is best): 3
Energy (10 is best): 2 (most of today), 3 (after sleeping all day)
Physical Discomfort (10 is worst): 6

Current Medications and Supplements

During one of my phone conversations with the Georgetown research people, I was asked to email them a list of my current medications and supplements. I kept putting this off until last night.

My brain fog was so horrendous yesterday after work that it took me over two hours to compose an email about my current medications and supplements.

It really shouldn't have taken that long, especially considering most of them are already listed in my May 2009 post Medications and Treatments. I think what took the most mental energy was categorizing everything into groups that made more sense AND trying to include dosage information.

Anyway, I though it might be an interesting update to my blog, so here is my (slightly edited) email to Georgetown.

(Oh, and if you're wondering why I keep talking about Georgetown, check these out: Hoping to be a Human Guinea Pig, Georgetown CFS Study, and the official research link.)

Hello!

In a previous phone conversation, Dr. R asked for a list of my medications. Unless noted otherwise, I take these medications/supplements daily.

Diagnosed Conditions:

• Allergies
• Asthma
• Eczema
• Acid Reflux
• Irritable Bowel Syndrome
• Chronic Fatigue Syndrome
• Polycystic Ovarian Syndrome
• Thalassemia Minor
• Interesting to Note: In 2008, I developed migraines and had them on and off for several months; however, my migraines now seem to have been replaced with somewhat less severe headaches that occur more frequently.

Rx medications:

• Advair 250/50
• Albuterol (as needed)
• Flonase nasal spray
• Zoloft,12.5-25mg
• Yaz
• Tandem, 106 mg elemental iron (every other day)

Medications/Supplements provided through my PCP's office (specifically for my CFS):

• ATP-20, 20 mg Adenosine Triphosphate (twice a day)
• Glyceron Plus IM injections (combination of three substances, one of which is glycyrrhizin...I can't remember the other two) - about once a week if I remember (which ends up being less than once a week).
• Glutathione IV - a few times a year, because this treatment is a bit pricey and takes a while to administer, I don't go very often for this.

OTC Medications/Supplements recommended by one of my doctors (PCP, GI, or Allergy/Asthma doc):

• Zyrtec, 5mg (10 mg if allergies are really acting up)
• Vitamin D, 1000 I.U.
• Fish Oil, 1000 mg
• Hydrocortisone (for eczema)
• Lactase (I take this only when I remember...which is not very often)
• Multi-vitamin (every other day; I take a different multi on alternate days -- see below)

OTC Supplements based on Rich Van Konynenburg's research: "Simplified Treatment Approach Based on the Glutathione Depletion- Methylation Cycle Block Pathogenesis Hypothesis for Chronic Fatigue Syndrome" (I made sure to get permission from my PCP before starting this treatment plan). I take these supplements every other day:

• 1/2 tablet of Perque Activated B-12 Guard (1,000 mcg; full tablet is 2,000 mcg)
• 1/4 tablet of Metagenics FolaPro L-5 Methyl Tetrahydrofolate (200 mcg; full tablet is 800 mcg)
• 1/4 tablet of Metagenics ActiFolate (200 mcg; full tablet is 800 mcg)
• 1/4 tablet General (multi) Vitamin Neurological Health Formula
• 1 softgel Phosphatidyl Serine Complex (500 mg)

OTC Medications/Supplements I have chosen to take based on my own research to aid with my IBS:

• Citrucel fiber supplement, 1000 mg
• Some sort of probiotic (usually acidophilus, but I have been trying different ones lately), currently I'm taking Digestive Advantage IBS Bowel Fitness Formula (which includes Bacillus coagulans GBI-30, 6086)

OTC Medications/Supplements I take from time to time (i.e., less than once a week):

• Tylenol and/or Advil for headaches; I have headaches almost every day (though most of the time I try to avoid any headache medications since I'm already taking so many other things)
• Melatonin, 5mg (for insomnia)
• Benedryl, 25-50 mg (for insomnia, but only if I'm really desperate)
• PreparationH (if my hemorrhoids are acting up)
• Monistat for yeast infections
• Athlete's foot antifungals

Medications I took in the past for migraines (but no longer take):

• Midrin
• Relpax
• Interesting to Note: I found that these medications did not satisfactorily relieve my migraines, though they did help somewhat.

Other Important Info:

• I am currently undergoing immunotherapy for allergies to: trees, grasses, and dust mites.
• I have allergies to other things including quinolone antibiotics, the glue on bandaids, and all types of earrings. I have a sensitivity to mesalamine. When I last took it, it resulted in neurological problems and hair loss.
• I experienced relatively low ferritin levels (17ng/mL) earlier this year, which is why I am on iron supplements every other day. My last few tests have ranged between 40 and 50.
• I had relatively low vitamin D levels (29 ng/mL) earlier this year, which is why I am on daily vitamin D supplements. My last three blood tests have shown levels in the 40's.

• I keep track of my oral medications/supplements by using a 7-day pill organizer that divides each day by Morn, Noon, Eve, Bed.

Please let me know if you need any additional information.

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, headache, nausea, brain fog, low fever that comes and goes.

Mood (10 is best): 6
Energy (10 is best): 3
Physical Discomfort (10 is worst): 5

Hoping to be a Human Guinea Pig

Disclaimer: My brain fog is acting up today, so I can't remember what I've already said about the following topic (and I'm mentally too tired to read through my blog to find out).

I'm really excited because I'm getting closer to being able to participate in worthwhile CFS research. I use the term "worthwhile" because there is so much junk CFS research out there. The more scientists know about this disease, the more likely they will be able to come up with some answers.

I've received the informed consent documents from both the Georgetown study and the University of Illinois at Chicago study.

I spoke with the Georgetown representative today and the next step is to schedule my visit to Washington, DC. The rep is supposed to email or call me later this week with available dates.

My next step in the UIChicago study is to have a phone interview. They'll call me after they receive my signed informed consent documents.

Lately I've found myself wishing more often that I were well. I've also been feeling a bit resentful toward my disease. This weekend in North Dakota was particularly bittersweet. I was able to see my family (and especially my nieces), but I spent so much time sleeping or restricting my activities that I felt left out. And that's another thing. I've been feeling left out an awful lot lately.

I think I so badly want to participate in CFS research is because I want to do my part to find a cure (or at least a treatment) for CFIDS. My reasons are selfish; I am getting desperate for some relief.

I've been sick for my entire adult life. Can't a girl get a break?!

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, headache, low fever, sore throat, achy body, brain fog.

Mood (10 is best): 6
Energy (10 is best): 4
Physical Discomfort (10 is worst): 6

A Weekend in North Dakota

This is what it looks like to have four children, all of whom are girls...

My husband Kenny and I spent this weekend in rural North Dakota visiting family we hadn't seen since 2005. It was a whirlwind trip that was priceless and well worth the physical toll it took on me.

We flew up to North Dakota for the purpose of visiting Kenny's brother, his wife, and their four children. What made the trip even more special is the fact that Kenny's parents and Kenny's brother's wife's sister (did you follow that one?) flew up to North Dakota as well. We all squeezed in the house as one, big family. (If you haven't been keeping track, eleven of us were under one roof!) We were able to take a rare family photo.

The most important part of the trip for me was spending time with our four nieces, the oldest of which is just starting fifth grade. The youngest is less than a year old; it was wonderful meeting her for the first time. The girls are our only nieces or nephews, so we feel a special attachment to them. We love them so much! I think the attachment is especially strong because we're not sure if I'll be able to have children...ever (see Childhood Dreams).

Amazingly, I felt pretty good during the actual trip. I forced myself to take it easy and spend most of the time inside (even when everyone else was outside). I slept for at least ten or eleven hours on Friday night, and I took two naps on Saturday. On Sunday I slept on all three flights back to Texas (there are no direct flights between North Dakota and Texas). When we finally made it back home, I thought I had successfully survived a trip without any physical repercussions -- a rare feat!

Unfortunately, I was wrong. I'm now paying for our weekend excursion. I'm running a fever and the lymph nodes on the right side of my neck are hurting. My throat hurts. I'm feeling achy all over and have been slightly dizzy and nauseated on and off today. Simply put, I'm experiencing a flare up that is likely to lead to a crash.

I am trying very hard not to have a full-blown crash. I went to bed early last night, and I tried to limit my physical activity today at work (yes, work). I can't stay home from work because I have very little sick/vacation leave left, and I need to save it for a real emergency or important trip (like my possible trip to DC to be part of a research study).

Despite the physical discomfort, I have no regrets that we took this trip. To me, family is important. We're even hoping to go back next year for an even longer stay.

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, headache, dizziness and nausea, low fever, painful lymph nodes on right side of neck, sore throat, achy body.

Mood (10 is best): 6
Energy (10 is best): 4
Physical Discomfort (10 is worst): 7

Weekend Trip & Quick Update

I've been super busy preparing to leave town this weekend. Kenny and I are going to visit family in North Dakota for the weekend (a whirlwind trip!), so I haven't had much time to write. I just want to give a quick update on the research opportunities I'm trying to pursue.

I've received the informed consent documents from the Georgetown University CFS study. The next step is a preliminary phone interview. If they're satisfied with what they hear, I'll be invited to Washington, DC for the actual research testing. There is a $400 stipend that comes with the completion of the research study, so this will help with my airfare. I also have family in DC, which is why I'm not worried about heading out there on my own.

I will be out of town for the weekend, and I don't know if I'll have time to get online. I may be too busy spending time with family or napping...

I'm just hoping I don't crash. I've finally started to get back to my normal state of tired (as opposed to extreme exhaustion).

Today's Activities: work & packing for trip. Today's Most Annoying Symptoms: exhaustion, mild headache, asthma attack, diarrhea; active eczema on left and right underarms, and right ankle.

Mood (10 is best): 7
Energy (10 is best): 4
Physical Discomfort (10 is worst): 4

Research Alert: Chronic Illness Survey

I'm happy to be posting another research opportunity! The University of Michigan's Center for Managing Chronic Disease and Advocacy for Patients with Chronic Illness, Inc. were awarded a grant by the NIH to study how people handle chronic illness. I can't remember exactly how I found out about this survey, but it happened when I was surfing the web this weekend.

Here are the links that explain the study:

• University of Michigan
• Advocacy for Patients with Chronic Illness, Inc.

Here is the link to the survey itself:

• http://chronicdisease.survey.sgizmo.com/

If you suffer from chronic illness or are the family caregiver of someone with chronic illness, then you can take the survey.

This survey is REALLY long (i.e., at least 50-60 minutes) and asks detailed questions that require equally detailed answers, so only take it when you have the stamina. If you run out of steam partway through (which I did), you have the option to save your work and have them email you a link to the survey so you can continue it later.

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, mild headache, asthma attack; active eczema on left and right underarms, and right ankle. After some serious resting for most of the weekend (except when I got my haircut), I managed to avoid a major crash.

Mood (10 is best): 7
Energy (10 is best): 3+
Physical Discomfort (10 is worst): 3

The Big Chop

(before)

Before today my last real haircut was in June of 2008. Today I had 12 inches of my hair chopped off to be donated to Locks of Love. From their website:

Locks of Love is a public non-profit organization that provides hairpieces to financially disadvantaged children in the United States and Canada under age 18 suffering from long-term medical hair loss from any diagnosis.

I first learned about Locks of Love when I was in college about ten years ago. A couple of my friends donated their hair at a special event that provided free haircuts to those who volunteered on the spot. My hair wasn't long enough to donate at the time, but the concept stuck with me.

I've actually tried to grow out my hair at least one or two times before, but each time I became frustrated with the unruly nature of very long hair and got a haircut. This was my first successful attempt at growing out enough hair that I could donate (but still have something left for me).

The irony in this hair-growing adventure is that I went through a period of several weeks during which my hair was falling out at an alarming rate. I was losing my hair at the same time I was trying to grow it out to donate it to people who had lost their hair. Huh?! Fortunately, the rate of my hair loss has slowed somewhat, and my hope is that it continues to slow to a normal rate.

In all honesty, I probably should not have gone out today because I'm fighting off a crash. I suppose I went out anyway because donating my hair was something I wanted to do sooner than later and because I have not left the house on a weekend since Sunday, July 19 (I know this because I've been keeping track of my activities on my blog).

Perhaps, going out today was my way of rebelling against my disease. Take that, CFIDS! Of course, I will be resting the remainder of today.

The good news is that my hair will soon be on its way to a new head!

(after)

Today's Activities: home & haircut. Today's Most Annoying Symptoms: exhaustion, headache, mild nausea, pain in right lymphnode in neck, mild sore throat, asthma attack; active eczema on left and right underarms, and right ankle.

Mood (10 is best): 7
Energy (10 is best): 2
Physical Discomfort (10 is worst): 6

Research Alert: CFS Genetic Study

I learned about a CFS genetic research study at the University of Illinois at Chicago through Sue Jackson's blog. This is one of the studies I mentioned in yesterday's post.

Here are her entries about the study:

• CFS Genetic Study (posted Tuesday, August 4)
• Update on Genetic Study (posted Friday, August 7)

I contacted the research assistant Caitlin Smith at cksmith@uic.edu to volunteer for the study. If you prefer the phone, you can call 312-339-5257.

I don't know if I'll be accepted, but it's worth trying!

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, mild headache, pain in neck lymph nodes; active eczema on left and right underarms, left hand, and right ankle.

Mood (10 is best): 6
Energy (10 is best): 2
Physical Discomfort (10 is worst): 5

An Exhausting Week

I'm so glad it's Friday! This week has been exhausting...so exhausting that I'm too tired to write about it... I can feel a crash coming on (the lymph nodes in my neck have been hurting like crazy the past couple of days), but I felt the need to write a quick update.

I'm being considered for a couple of CFS research studies.

I don't know if I'll actually get chosen, but I'm excited about the prospect. I've never been a research guinea pig before, but I'd pretty much do just about anything (productive) to help advance CFS research.

The two research studies I'm trying to volunteer for are the Proteomics of Cerebrospinal Fluid in Chronic Fatigue Syndrome through Georgetown University and a CFS genetic study through the University of Illinois at Chicago.

I've been in touch with both research groups and will be participating in a couple of initial screening interviews. Here's hoping!

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, mild headache, pain in neck lymph nodes, asthma attack, diarrhea; active eczema on left and right underarms, left hand, and right ankle.

Mood (10 is best): 7
Energy (10 is best): 3
Physical Discomfort (10 is worst): 6

Simple Banana Bread Recipe

I know this blog is supposed to be about my life with CFIDS, but I got this banana bread recipe from a friend and only recently had enough energy to try it out...twice! It's a simple recipe and didn't take too much energy for me to make, so I thought I'd pass it along.

My apologies to my metric system friends. I don't know the conversions for these measurements... but I found an online conversion chart here. (Unfortunately, my brain fog is preventing me from doing the conversions for you at the moment.)

First, the original recipe from my friend:

3 or 4 ripe bananas, smashed
1/3 cup melted butter
1/4 cup sugar (recipe calls for 1 cup, but she prefers using just 1/4 cup)
1 egg, beaten
1 teaspoon vanilla
1 teaspoon baking soda
A pinch of salt
1 and 1/2 cups flour

Instructions:

Preheat oven to 350 F. Mix butter into mashed bananas in bowl. Mix in sugar, egg, and vanilla. Sprinkle baking soda and salt over mixture and mix in. Add flour last. Pour batter into 4x8 inch loaf pan. Bake for 1 hour.

Here's my modified recipe:

4 ripe bananas, smashed
1/3 cup melted butter-substitute (I used Smart Balance)
1/2 cup sugar (I like it a little sweeter than my friend)
2 egg whites (2 whites = 1 egg)
1 teaspoon vanilla
1 teaspoon baking soda
Pinch of salt
1 and 1/2 cups flour
Handful of crushed walnuts

Instructions:

Preheat oven to 350 F. Mix butter into mashed bananas in bowl. Mix in sugar, egg, and vanilla. Sprinkle baking soda and salt over mixture and mix in. Mix in flour. Add walnuts to batter.

I don't have a loaf pan, so I had to get creative. The first time I made the recipe, I used muffin tins. They only needed about 15-20 minutes to bake. The second time I made the recipe, I used a small cake pan. It needed about 30-40 minutes to bake.

Enjoy!

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, active eczema on left armpit and right ankle, headache, brain fog.

Mood (10 is best): 6
Energy (10 is best): 3
Physical Discomfort (10 is worst): 4

Research Alert: More Research Opportunities

It occurred to me that it could be useful to post additional CFS research opportunities. These research descriptions are from the U.S. National Institutes of Health ClinicalTrials.gov website. The studies were listed as Chronic Fatigue Syndrome open studies; however, I don't know how often the research information is updated or if all these studies are still in fact accepting volunteers. Proceed at your own risk...

United States

1. Vanderbilt University in Nashville, Tennessee is recruiting both CFS patients with Postural Tachycardia Syndrome (POTS) and healthy subjects between 18 and 65 years old to participate in a study called "Autonomic Nervous System and Chronic Fatigue Syndrome."

2. Georgetown University in Washington, DC is conducting a research study called "Proteomics of Cerebrospinal Fluid in Chronic Fatigue Syndrome." They are recruiting both CFS patients and healthy individuals between the ages of 21 to 65 who are willing to undergo a lumbar puncture (a.k.a. spinal tap).

3. The pharmaceutical company Hemispherx Biopharma is recruiting CFS patients ages 18 to 65 from across the United States to study the efficacy of the drug Ampligen in Chronic Fatigue Syndrome.

4. Duke University Medical Center in Durham, North Carolina is recruiting CFS patients with insomnia ages 21 to 65 for the study called "Behavioral Insomnia Therapy With Chronic Fatigue Syndrome."

5. Charles Drew University of Medicine and Science in Los Angeles, California and Pfizer are recruiting CFS patients and healthy subjects ages 18 to 49 for the study "Use of Sildenafil (Viagra) to Alter Fatigue, Functional Status and Impaired Cerebral Blood Flow in Patients With CFS."

6. University of Cincinnati in Cincinnati, Ohio and Eli Lilly and Company are recruiting CFS patients 18 to 65 years old to participate in the study "Double Blind Trial of Duloxetine in Chronic Fatigue Syndrome."

Europe

1. Haukeland University Hospital in Bergen, Norway is recruiting CFS patients between 18 and 60 years old to participate in a study called "Drug Intervention in Chronic Fatigue Syndrome" in which it will test the efficacy of the drug Rituximab.

2. UMC Utrecht, The Netherlands Organisation for Health Research and Development (ZonMw) (The Netherlands), and Innovatiefonds Zorgverzekeraars (Rvvz) are recruiting healthy subjects and CFS patients ages 12 to 18 to participate in a study called "Efficacy of Web-Based Cognitive Behavioural Treatment for Adolescents With Chronic Fatigue Syndrome."

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, painful sore on tongue, active eczema on left armpit, left hand, and right ankle, brain fog.

Mood (10 is best): 6
Energy (10 is best): 3
Physical Discomfort (10 is worst): 3

Research Alert: Georgetown CFS Study

Do you or does someone you know live near Washington, DC?

Georgetown University is currently conducting a research study called "Proteomics of Cerebrospinal Fluid in Chronic Fatigue Syndrome."

They are recruiting both CFS patients and healthy individuals between the ages of 21 to 65 who are willing to undergo a lumbar puncture (a.k.a. spinal tap).

It's my understanding that they are in need of more healthy subjects. I just emailed the contact person, volunteering for the study. I don't know if I'll be accepted (since I obviously don't fall under the "healthy" category) but it's certainly worth trying!

Here is the official link about the study from the NIH's Clinical Trials.gov page.

A quote from someone participating in the study:

The Georgetown University located in washington Dc is conducting a very important study reguarding CFS. They have identified a specific set of proteins found in the cerebral spinal fluid in patients with CFS. These proteins are not found in healthy people and maybe the actual pathology of this disease itself.Upon enrollment I was informed that they are in desperite need of healthy control subjects that are WILLING TO HAVE A LUMBAR PUNCTARE PERFORMED. My girlfriend has agreed to participate with me. I am urging each and every one of you to try to recruit a healthy volunteer as these findings may very well lead to a cure of this horrific illness. Study participeints will be required to stay in the hospital for a total of three days where they will undergo testing and will be paid in the amount of $400.00 for their time. I will post a link below for those of you who maybe interested. Remember, it is up to us to make a difference! Lets solve CFS!!!

Thanks to cfswarrior for posting info about this research study yesterday.

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, mild headache, active eczema on left armpit, left hand, and right ankle.

Mood (10 is best): 7
Energy (10 is best): 3 (after sleeping all day), 2 (most of today)
Physical Discomfort (10 is worst): 3