Monday, April 25, 2011

Movie Monday 4/25

I hope everyone had a nice Easter (or Passover).  We spent ours on the road and arrived at my father-in-law's house in time for a nice little Easter dinner with him.

We had a good trip here and really enjoyed camping along the way.  We miss our little pop-up camper during the winter months!  And we had a wonderful dinner Saturday night with some good friends in Arkansas - friends that we met through this blog!  Their 17-year old daughter has CFS and is actually doing very well these days.  It was great to see them, and I discovered a new treat: fried pickles (really!) - yum.

Not much time for movies last week since we were busy preparing for our journey.  The kids were home sick (Craig for two days and Jamie all week), so they watched some movies during the day, but I was so busy I don't even remember what they watched.  So, just one movie to report on:
  • Last night, we watched The Tourist with my father-in-law.  I'd heard mixed reviews of this recent thriller starring Angelina Jolie and Johnny Depp, but we all enjoyed it.  The scenery in Venice was stunning, there was plenty of humor in it, and though it seemed predictable at first, it had a few tricks up its sleeve that surprised us.  All in all, a fun movie.
Have you seen any good movies lately?

(If you're interested in what we're reading this week, check out the Monday post on my book blog.)

Wednesday, April 20, 2011

New Population Study on Kids/Teens with ME/CFS

A recent Dutch study attempted to quantify how many kids/teens have ME/CFS, information that is badly needed.  However, I don't think they quite got it right, based on the headlines I've been reading, like this one from Reuters:  "Chronic fatigue rare but serious in teens".

The problem, which is explained in the linked article, comes from the methods employed.  The study authors based the numbers on responses to surveys from pediatricians and general practitioners.  Less than half returned the surveys, and only half of the GPs participating in the study said they even recognize CFS as a distinct diagnosis!  So, the numbers are obviously much lower in this study than they are in reality.  How can you rely on a doctor's count of cases of ME/CFS if he/she doesn't even recognize it?

I can tell you from the number of kids and teens with ME/CFS I know personally just in my local area and the number of parents I hear from through this blog, that ME/CFS is NOT rare in teens.  If the CDC's estimate that almost 80% of people with ME/CFS are undiagnosed, then the number of teens affected must be much higher than this study cited.  At least, the study authors emphasized the severity of ME/CFS.

It's an interesting article, though, and perhaps it will spark some necessary and far-overdue debates about the incidence of ME/CFS in kids and teens.

As for my own teens, they've both been home sick most of the week so far.  Craig went back into school today, even though he wasn't feeling well.  He's got some fairly severe congestion, too, so I'm taking him to the doctor this afternoon - don't want to get stuck on the road on a holiday weekend with a sinus infection!  Jamie is still badly crashed with severe symptoms.  My husband and I said to each other last night that if this crash is still just from attending his prom Friday night, that's pretty depressing.  We're hoping they both feel well enough for our spring break trip.

Tuesday, April 19, 2011

My testimony for CFSAC

Yesterday was the deadline for submitting testimony for the upcoming May 11 CFS Advisory Committee (CFSAC) meeting hosted by the National Institutes of Health (NIH).  You may recall that we are planning a big awareness event, Speak Up for ME!, for kids, teens, and young adults with ME/CFS at the meeting, so I focused my own testimony on my kids.  This is a bit too long for my family's 5-minute speaking slot, so I'll have to edit it down before presenting it at the meeting, but I wanted to submit the complete testimony in writing.  Here it is:

"My name is Sue Jackson, and I have had ME/CFS since March 2002.  Both of my sons, ages 13 and 16 have it also – they’ve both been sick for seven years.  I have always wanted to come to a CFSAC meeting, but I need to nap every day.  I know that attending today will cause a relapse, but it’s just too important to miss.

Although my own life has been dramatically changed because of ME/CFS and I am severely limited in what I can do, I want to primarily focus on my sons today because pediatric ME/CFS is rarely talked about – and even more rarely researched – and it is a much larger problem than most people understand.  In addition to my two sons, I personally know seven other kids with ME/CFS just in my local area, plus several more who probably have ME/CFS but aren’t diagnosed, and I’m sure there are many more.  I write a blog about living with ME/CFS, and I receive e-mails every week from parents whose kids are completely disabled by this devastating illness.

Our older son, Jamie, started showing symptoms of ME/CFS when he was eight years old and in 3rd grade.  The symptoms came and went for a couple of years, then become suddenly much worse when he was ten.  Jamie missed 60 days of 5th grade that year and was bed-ridden about 50% of the time.  When he started middle school the next year, we didn’t even bother counting the days’ absent.  After some intense battles with teachers and administrators (which left me much sicker), the school finally agreed to waive all attendance requirements and all non-essential courses.  Jamie took two classes with a homebound instructor and took the other three required classes in school.  He made it to those three classes about 60% of the time, with me driving him back and forth to school several times a day so he could rest in between classes (on the days he was able to go at all).

Our younger son, Craig, began showing ME/CFS symptoms when he was just six years old, in 1st grade.  We recognized the sore throat, flu-like aches, and exhaustion after mild exercise, but his frequent chest pains and back pain scared us.  After many doctor’s visits, tests, and conferring with some experts, we were fairly certain he also had ME/CFS, though milder than his brother’s.  We didn’t want him to think of himself as a sick kid at such a young age, but when he missed 35 days of school in 3rd grade and the principal began calling, we knew it was time to have him officially diagnosed.

We were very, very fortunate to be able to see Dr. David Bell and to confer with Dr. Peter Rowe.  They are both excellent doctors with amazing dedication to their patients.  They explained Orthostatic Intolerance (OI) to us and worked with our sons’ local pediatrician to treat it.  Kids often respond well to OI treatment, and we were fortunate that it worked quite effectively for our kids.  Both boys were able to return to school full-time.

Although we are grateful for this treatment that allows them to live more normal lives, ME/CFS is still a significant part of daily life for them.  They go to bed at 8 pm every night, even our 16-year old.  They have to be careful not to overdo and will experience a severe flare-up of ME/CFS symptoms if they do too much.  A sleepover at a friend’s house can result in several days of being too sick to get up off the couch.  Jamie still misses between 25 and 35 days of school each year due to ME/CFS flare-ups (a bit less for Craig).  They both take a lot of medication every day, and we know if they stopped the medications, they’d go right back to being bedridden much of the time.   As my 16-year old son said to me recently, “This illness has ruined my life.  I am so far from being a normal teenager.”

My husband and I worry about their futures.  Our older son will be college-age in a year, but will he be able to leave home?  Even if he does make it through college, will he ever be able to handle a full-time job?  What if the medications don’t work as well for him as he gets older?  What if he gets worse?  Neither of our sons has been exposed to the Epstein-Barr virus yet, a known trigger for ME/CFS.  What will happen if one of them gets mono or is exposed to another triggering infection?  These unknowns are frightening, but we know that we are the lucky ones, that there are thousands of kids across the US who are completely bedridden with ME/CFS and unable to attend school at all.

Living with ME/CFS is a constant struggle.  We can’t escape it even for a day because we can’t escape our bodies and our limitations.  It is always there and we worry that it will always BE there, and there’s nothing we can do about it.  When our children feel bad or can’t do something, we feel helpless, and there is no worse feeling for a parent than helplessness.

These kids are missing out on so much – parts of their lives they will never get back.  When I was a teen, my life felt so carefree – no worries, few responsibilities.  Jamie in particular constantly feels the weight of his illness and is always trying to catch up from missed days of school.  Our kids deserve more.  They deserve solid, scientific research and real treatment options that address the biological cause(s) of the illness rather than just masking symptoms.

After living a perfectly healthy life for 37 years, I got ME/CFS in 2002, and each of my sons became ill within a couple years of that.  We are living proof that this illness has both genetic and infectious roots that need to be further investigated.  Families like ours, with more than one person with ME/CFS, are not uncommon, as the 2006 New Jersey CFS Association study showed.

Although research funding for ME/CFS in general is severely lacking, funding for research into pediatric ME/CFS is practically non-existent.  There hasn’t even been a complete population study done on the incidence of ME/CFS in children and teens. 

Most, if not all, of the significant advances in ME/CFS research so far have come from private funding, but we need the involvement of the CDC and NIH in order to help the millions of Americans, including kids and teens, who are disabled by ME/CFS and can’t find a knowledgeable doctor or an effective treatment."

 P.S. There are still ways that you can help to support this awareness project, even if you can't go to the meeting.  Check out the Speak Up for ME! website for more information.

Monday, April 18, 2011

Movie Monday 4/18

Kind of a rough Monday here.  Both boys are home, crashed, today.  Jamie went to his prom Friday night and stayed out until 2 am!  Craig slept over at a friend's house Saturday night, then came home yesterday and slept all day.  Today's crash is probably the result of those two late nights, though Craig has some congestion, too, so there might also be a virus afoot.  Always hard to tell - he sometimes gets congestion as one of his crash symptoms.  Nothing to do but wait and see.

I have an insanely busy week ahead, trying to get ready for our spring break trip to visit my father-in-law in Oklahoma.  I received a fat package of additional forms from Social Security this weekend that have to be filled out and returned before we leave, too.  Of course, the information asked for is all stuff I already explained in my initial application; some of the forms are identical to those I already filled out!  Plus all of my doctors have been calling today for details on when I left work, etc.  I guess they all got their forms in the mail, too.

We did enjoy some movies this weekend:
  • Friday night, while waiting for Jamie, Ken and I watched Love Happens, starring Jennifer Aniston and Aaron Eckhart, about a successful author and speaker on grief (Eckhart) who hasn't yet dealt with the loss of his own wife.  It seems to be a light romance at first, but it has more depth than most, dealing not only with love but also with loss.  We both liked it.  Then I went to bed, and Ken waited up to pick up Jamie!
  • With Craig off at his sleepover Saturday, Ken, Jamie, and I watched Hancock, starring Will Smith as a hard-drinking, potty-mouthed, messed-up superhero.  He saves the life of a PR professional (Jason Bateman) who offers to help him clean up his image.  It was good, with some surprising twists in the plot.
  • After Jamie went to bed, Ken and I watched Country Strong, starring Gweneth Paltrow as an alcoholic country music star slightly past her prime and Tim McGraw as a rising star who tries to help her.  It reminded me somewhat of Crazy Heart which we watched a few months ago, though it had its own unique plot elements.  Although I'm not really a country music fan, I enjoyed the music in the movie.
Have you seen any good movies lately?

Thursday, April 14, 2011

Fascinating WSJ Article on Retroviruses

Our best friend at the Wall Street Journal, Amy Dockser Marcus (who has written some excellent articles on CFS) has written another article, a look at the latest research on how ancient viruses can contribute to modern disease.  Her article, How Old Viruses May Haunt Us, is not solely about CFS.  In fact, CFS is only mentioned in the last paragraph, but the information she provides is absolutely fascinating and very relevant to the puzzles surrounding CFS.

NIH State of the Knowledge Videocast Posted

For all of you who were waiting to watch some (or all) of last week's NIH ME/CFS State of the Knowledge Workshop, the videocast has been posted (just scroll down a bit to April 7-8).  If you want to zero in on certain presentations, you can refer to the meeting agenda to help find the sections you want.

Wednesday, April 13, 2011

Chronic Fatigue Syndrome on the SAT!

Jamie took the SAT (college board test) today for the first time.  You won't believe what he saw in the Vocabulary section...a sentence about CFS!!

He said it was something to the effect of, "People with Chronic Fatigue Syndrome were angry when the  doctor said it was psychosomatic, that it was all in their heads, rather than a physical ailment." (not the exact words but something similar).

Isn't that amazing?  We've hit the big time!  He said he felt like shouting out loud!  Several of his friends mentioned it to him after the test, too.

Does this mean our illness is finally, officially mainstream?

Tuesday, April 12, 2011

Time to Vote on a New Public Service Announcement!

You may recall I posted recently about a contest, sponsored by the ME/CFS Worldwide Patient Alliance, for a new ME/CFS Public Service Announcement (PSA) that will be sent to TV stations.

It's time to vote for your favorite PSA and let your voice be heard!  Here are the details:

You get to have your say with MCWPA. We are now calling for ME/CFS patients and their families to vote on the final versions of the PSA contest entries. After receiving patient feedback, the designers made changes.  Use the links below to watch the PSAs on YouTube (each one is only 30 seconds long):

View PSA #1 Hallmark.

View PSA #2 Serious.

View PSA #3 Prevalent.

View PSA #4 Whirlwind.

Be sure and view the above videos before going to the survey to cast your vote.

The winning PSA designer will received $400 from the MCWPA donations. An anonymous donor has also offered to give $100 to the winner's favorite charity. The second place winner will receive $200 and the third place winner will receive $100.

Voting ends on April 18 at midnight EST.

I just watched the videos and cast my own vote - it only takes a few minutes!

Monday, April 11, 2011

Movie Monday 4/11

Hope everyone had a good weekend!  I spent most of the weekend planning vacations - our road trip to see Ken's dad in Oklahoma for spring break and our big trip to California this summer.  I've really been feeling in a rut lately, so I can't wait for spring break!  We all need to get away for a little while.  Of course, that will put me even further behind in everything, but it will be worth it!

We enjoyed some good movies on Friday evening:
  • Craig was at a dance, so Jamie, Ken, and I watched Deja Vu, an action-packed sci fi suspense movie starring Denzel Washington.  We loved it right from the start because it is set in our beloved New Orleans!  Washington stars as an ATF agent investigating a terrorist attack.  The FBI comes in to help, along with some top-secret new technology, and that's where the fun begins!  It was fast-paced with a clever and intriguing plot, and we all enjoyed it very much.
  • Ken and I watched (over the course of a couple of nights) It's Complicated starring Meryl Streep and Alex Baldwin as a 50-ish divorced couple who have an affair with each other, with Steve Martin as an architect who is interested in Streep's character.  It was all very light and funny and lots of fun.
Have you seen any good movies lately?

It's 80 degrees here this afternoon!  Hope you are all enjoying this lovely Monday.

(If you're interested in what books we are reading this week, check out my Monday post on my book blog.)

Saturday, April 09, 2011

Quote It Saturday 3/12 - State of the Knowledge

I realized that in my haste to post my notes from the 2-day NIH ME/CFS State of the Knowledge Workshop yesterday, I didn't really sum up the conference or express my perspective on it....which is probably good for the notes to be objective, but I thought you might be interested in an quick overview, too.  Since I heard the perfect quote to accompany this overview, I thought I'd include that, too.

This is actually an approximate quote, since I listened to the book on audio, but I got the critical parts right:

As my friend Christopher Reeve said, Optimism plus Information equals Hope.

          - Michael J. Fox, Always Looking Up: Adventures of an Incurable Optimist
(I loved this inspiring memoir - you can read my full review at my book blog).

Overall, I saw a lot of reason for hope at this week's workshop.  True, there are some huge challenges ahead, but we've come a long, long way from where we were just a couple of years ago.

Just the fact that this workshop took place is amazing and exciting.  To have most of the top ME/CFS researchers (and some clinicians and patients, too) in the same room for two days, exchanging information on all the different aspects of ME/CFS is a stunning accomplishment.  In the equation above, the Information side is growing by leaps and bounds.  I told my husband that the workshop overall was a bit like the old blind men and the elephant tale - each scientist is focused on his or her own small, super-specific area of expertise.  But for two days, they all sat there together and listened to each other and exchanged ideas.  It's a good portend for the future.

Progress is being made in many different aspects of ME/CFS - the brain, the immune system, genetics, the autonomic nervous system, and more.  True, each person is focused in one area, but there seems to be true interest in working together and in seeing the picture of ME/CFS as a whole.  I think the participants in the workshop learned a lot from each other, and I believe, from the comments made during the summary session, that there will be more integration and cooperation among them going forward.

Every single person there seemed to understand the severity of ME/CFS and have an idea of its devastating impact on patients.  Not one single presenter talked about psychological causes or confused CFS with depression - that alone is a big step forward!

Granted, scientific progress often moves at a glacial pace - every single hypothesis has to be tested multiple times in multiple ways, but important advances are being made in every area of study.  I think there is a lot of reason for hope.

Friday, April 08, 2011

WSJ Blog Covers XMRV Debate at NIH Workshop

In my summary of the 2-day NIH ME/CFS State of the Knowledge Workshop (see post below), I gave a very brief summary of the XMRV debate between WPI and the National Cancer Institute.  The Wall Street Journal Health Blog did a much better job providing the details of the debate that took place yesterday and today.  Check it out if you're interested in more information.

My Notes from NIH ME/CFS State of Knowledge Workshop

NOTE:  The purpose of this 2-day workshop was for scientists to present their latest research findings to other scientists.  As such, the presentations were aimed at fellow medical scientists, and the details were often over my head.  I do not have a medical background (and my last biology class was several decades ago!). 

Here, I am summarizing only a few of the key conclusions from certain presentations – this is by no means a comprehensive summary.  I didn’t watch all the presentations (had to take my naps and take care of my family) and some I left out simply because they were highly scientific and/or theoretical with little of practical use to patients today.  Also, I didn't start taking notes until Day 2 (I was just too sick), though I've included some key points from Day 1 here).  You can watch any or all of the presentations online, referring to the meeting agenda to help find the ones you want (they haven't yet posted the videos online, but you should be able to find links by next week at the NIH Videocasting website, unless the government shuts down).


Dr. Anthony Komaroff, Harvard, presented an overview of ME/CFS and its symptoms.
Dr. Leonard Jason, DePaul University, presented an overview of the various definitions of ME/CFS, including their flaws.

INFECTIONS – Each of the four following presenters talked about the role of various infectious agents in ME/CFS:
Dr. Glaser, Ohio State – EBV and CFS
Dr. Chia, EVMED – Role of Enteroviruses in CFS

XMRV (both of these presentations are HIGHLY simplified here – just the overall conclusions):
Dr. Mikovitz, WPI – XMRV in ME/CFS
  • Dr. Mikovitz presented the latest findings on XMRV from WPI and focused primarily on all the reasons why contamination is NOT an issue and how they have proven this and reconfirmed their positive XMRV results in multiple ways.
  • In a summary at the end of the Workshop, Dr. Mikovotz pointed out that HIV does not cause AIDS – the official definition of AIDS says it is caused by the combination of HIV plus one of many other co-infections and that it could possibly be the same case with XMRV and ME/CFS (where the co-infections are EBV, HHV-6, Lyme, enteroviruses, etc.).

Dr. Coffin, National Cancer Institute – Origins of XMRV and MLV
  • Dr. Coffin presented his data on how XMRV and MLV originated from mice and contaminated the prostrate cancer cell lines and therefore concludes the XMRV positive studies are due to contamination.

(See the problem here?  There was some heated debate but no resolution yet of this issue.  Bottom line:  The scientific community as a whole has not yet come to a conclusion as to whether XMRV is a critical element of ME/CFS.  Some factions say yes, absolutely, no question; other factions say no way, not possible.  Studies are already planned and started to test these theories with blind, coded samples – These are detailed, thorough studies with answers expected perhaps a year or more from now.  Stay tuned.)

Dr. Light, University of Utah – Gene Expression Post-exercise in CFS vs. Other Illnesses
  • There were clear differences post-exercise in the ME/CFS patients to differentiate them from patients with MS, fibromyalgia, and healthy controls (all participants were sedentary and deconditioned).

Dr. Christopher Snell – Exercise Intolerance
  • Dr. Snell and his group at University of Pacific/Pacific Fatigue Lab have been doing the BEST research on exercise intolerance in CFS for over a decade now (my opinion, but widely held!)
  • He described how they use cardiopulmonary exercise testing to characterize and define many of the effects of exercise on people with ME/CFS and clearly prove CFS is different from deconditioning.
  • Their tests look at not just during exercise but also 24 hours and 48 hours AFTER exercise (HURRAY!).
  • You can’t tell CFS patients from sedentary controls at baseline, but there are clear and distinct changes in CFS patients in the days following exercise.  We all know this already, of course, but this is clear, scientific evidence to show how disabling and critical PEM is for us.

Dr. Rowe – Orthostatic Intolerance and CFS
  • General overview of OI in CFS (surprisingly, it seemed that some of the researchers focused in single areas weren’t even aware that OI is part of CFS).
  • Studies show 95% of people with ME/CFS have OI (either POTS or NMH or both)
  • Emphasized that OI underlies most symptoms of ME/CFS and is a critical component.
  • Another speaker mentioned that studies show that LOW doses of propranolol (the beta blocker I take) was more effective at controlling POTS than high doses – I’ve heard the same conclusion from individual patients.
  • For more information, watch this presentation online and/or check out Dr. Rowe’s CAA Webinar on OI (you can watch it on Youtube, read the slides, or read his full article):


Dr. Klimas – Biomarkers
  • There are many immune system biomarkers identified that could be used for diagnostic purposes and to target treatment areas, especially those related to NK cell function and cytokines.
  • Advances in testing in the last few years make these biomarkers more reliable.
  • Dr. Klimas already uses many of these tests in her practice to diagnose, to categorize patients, and to target treatments.

Dr. Cook (U of Wisconsin) - Neuroimaging Biomarkers
  • Data from neuroimaging has been used to document brain changes in CFS during mental activities: these show that people with CFS must work harder and use more of their brain to do the same tasks as healthy controls.
  • This area is probably not ready yet to be used as a biomarker, but the research is promising and should be continued.
  • Dr. Rowe asked if they can do brain imaging on patients while standing – not yet!

Dr. Dean, National Cancer Institute – Identifying Genes and Genetic Risk in Diseases
  • Genomes have been identified for many complex diseases.
  • One challenge: in order to identify genes, there need to be clear ways of defining and classifying the illness (i.e. biomarkers) – a problem with ME/CFS.
  • Although this technology is not quite ready and cheap enough to apply to CFS as a whole right now (maybe 5-10 years from now), it can be used for individuals and for families (in my opinion, this is a critical area that hasn’t been investigated enough yet – incidence of ME/CFS in families).

Dr. Fred Friedberg, SUNY Stony Brook – Self-Management of ME/CFS and the Meaning of Improvement
  • Not much new here - Self-management techniques (pacing, finding positive activities to improve satisfaction that don’t push past physical limits) can help patients and deserve more attention.
  • He also referred to the PACE trials – showed data that CBT can indeed help some CFS patients but the problem is that the UK presents it as a first-line (and often ONLY) “treatment.”  Also explained that GET can be harmful if patients are pushing past their limits (big news, right?)

Dr. Biaggioni, Vanderbilt – POTS and CFS
  • Another excellent presentation on OI, focused on POTS.
  • Beta blockers are the best treatment for patients with POTS and CFS.
  • Reinforced yesterday’s point that very low doses of beta blockers work best, in order to prevent the side effect of fatigue, even as low as 20 mg of propranolol (which is what I take).  They prefer a short-acting beta blocker (propranolol) because it’s impossible to titrate the longer-acting ones to a low enough dose.
  • Important to avoid deconditioning  - the more time we spend lying down, the worse our POTS gets – but this is a challenge since just standing up can drive our HR way above the anaerobic threshold.  Can try recumbent bike or any exercise in water (because the water pressure helps to control BP and HR).  Beta blockers can allow POTS patients to exercise by lowering HR (as has been my experience).

Dr. Lucinda Bateman, Fatigue Consultation Clinic (Utah) – Treatment Overview
  • She presented an excellent overview of how she treats patients:
1.     Diagnose accurately.
2.     Teach the concept of pacing.
3.     Address symptoms that alter function and illness severity (including despair, disordered sleep, pain, deconditioning - very carefully, adapting to illness severity, fatigue).  All of these symptoms can be effectively treated.
4.     Treat Orthostatic Intolerance and Low Blood Volume (using hydration, increased sodium, meds like Florinef, midodrine, and beta blockers).
5.     Treat Infections/immune dysfunction (with anti-virals, gamma globulin, Immunovir, Ampligen).
6.     Treat HPA Axis Dysregulation (HRT, thyroid, other hormones that might be lacking).
7.     Other treatments: Magnesium for pain, Vitamin B12 helps some patients.

IACFS is working on Treatment Guidelines – doctors can download Dr. Bateman’s intake forms at IACFS website.

  • Stratification – categorizing patients – is critically important since the illness is so heterogenous but these subtypes must be standardized.
  • Integration:  important to look at the whole illness, from a molecular level to a clinical level and share findings.
  • Case definitions must be standardized, and standard operating procedures/methods should be standardized among researchers.
  • Reproducible biomarkers are a must for future research to move forward.

  • Director of NIH stopped by to address the group! He’d intended to spend more time in the workshop but was pulled into emergency meetings because of the likely government shut-down.  He expressed strong NIH support for furthering ME/CFS research, though he warned we are probably looking at times of record-low funding coming up.

Thursday, April 07, 2011

NIH State of the Knowledge Broadcast - LIVE

Just a quick reminder - the NIH ME/CFS State of the Knowledge Workshop is being broadcast live NOW (all day today and tomorrow).

Just go to this website and click on the ME/CFS Workshop.  I had to download a RealPlayer (I use a Mac) in order to watch it - a quick and easy process started by clicking on Player Software on the same page.  The more people who log in to watch, the better - the NIH tracks the numbers!

Feeling pretty badly crashed today, so lying in bed watching the conference is just my speed for today.  Gotta get back to it...

Wednesday, April 06, 2011

ME/CFS Family Study

Dr. Jamie Deckoff-Jones is starting an informal study of ME/CFS and related illnesses in families.  She works for WPI and writes a blog about her and her daughter's experiences with CFS.  They are both XMRV positive and have been trying anti-retrovirals.  Her blog is very interesting and always enlightening, but be forewarned: there is often a lot of mud-slinging among the commenters.

Whether you have family members who are ill or not, please take a moment to visit her blog and answer the survey questions (via e-mail and confidential).  Obviously, possible transmission of CFS among family members is a subject of great importance to my family.  This is long overdue, and anything that helps to shed some light on the mechanisms of ME/CFS is a good thing. 

Tuesday, April 05, 2011

NIH State of the Knowledge Workshop

The U.S. National Institutes of Health (NIH) has posted the agenda for its two-day State of the Knowledge Workshop on ME/CFS Research taking place on Thursday and Friday this week (April 7-8).  It's two days chock-full of presentations by the top ME/CFS  researchers - should be a great overview of the latest findings.

The entire two-day conference will be broadcast live via the web - click on the link at this page to access the webcast on the days of the conference.  I will certainly tune in for some of it - should be enlightening!

Monday, April 04, 2011

Movie Monday 4/4

Happy Monday!  Hope you all had a good weekend.  We spent most of it watching soccer games and working on our tax returns.  Thank goodness we finally finished - whew, what a big job!  Sorting out the medical expenses - including what was paid by insurance, what was reimbursed from our flexible sending account, and what was truly out-of-pocket - was a huge task in itself!  Now, I have to get back to my neglected to-do list.  I just spent hours going through all the e-mails that piled up this weekend.  I'm rarely online during the weekends, so Monday is always a catch-up day.

Well, the other thing we did this weekend was to watch two movies:
  • We watched Date Night with the kids, and I was pleasantly surprised!  I expected this comedy starring Tiny Fey and Steve Carell to be just 90 minutes of silliness and slapstick (you know, plenty of jokes about people getting hit in the crotch), but it was actually a pretty good movie.  It was very funny (and not a single crotch hit!) but also had an element of mystery/suspense to it.  Also, Ken and I could relate to the main characters - a suburban NJ couple, overwhelmed and tired, who attempt a special night out together in NYC.  Overall, very enjoyable.
  • Ken and I watched Extraordinary Measures, another movie that struck a bit too close to home.  It's based on a true story, about a family who have two kids with a fatal, degenerative illness, Pompe disease (of course, we are grateful our kids have long lives in front of them, but we could relate to other aspects of the family's life).  The two kids are both getting close to the expected lifespan for Pompe kids, and the parents are increasingly desperate to find a way to save them.  The dad, who works for a pharmaceutical company, discovers some promising - but not prominent - research being done on a new treatment and searches out the researcher, a brilliant scientist but grumpy loner in Nebraska played by Harrison Ford.  The parents end up facing a decision - should they put all their hopes (and time and money) on a possible miracle or should they devote all of their energy to just enjoying their kids' last days?  Yes, it's a tear-jerker, but it's also very inspiring and uplifting.  When it ended, Ken and I looked at each other and said, "Should we be doing more?  Fund-raising? Something to help move the science along?"  It really was inspirational.
Have you seen any good movies lately?

    Friday, April 01, 2011

    Friday Fun!

    Hee hee...check out this YouTube video of a hilarious new product.  It's meant for lazy video game players, but wouldn't this be useful for those days that you have to spend on the couch?  I've learned to do everything else lying down, why not eat?

    TGIF!  It's been a long, busy week here, but at least I felt good for most of it.  I was moderately crashed on Wednesday, but that's it.  Good thing because this week was packed full - orthodontist, dentist, haircut, grocery shopping, middle-school band festival, plus the first week of soccer season.  Whew!  The good thing about soccer season is that I get a little downtime while Ken coaches the kids' team practices.  The downside is that we have to get up early tomorrow morning to watch two games in a row in the cold and wet! actually snowed here this morning.  What happened to spring?

    Hope you enjoyed the laugh on a Friday.  Have a great weekend!