Friday, October 29, 2010

More on XMRV and CFS/ME

I came across another couple of articles on XMRV this week that I thought might be of interest to you.

First is a brief article (actually a sidebar) called "Unraveling the Mysterious XMRV Virus" in a larger article on virus research at the University of Missouri.  The cool thing about this article is that it appears in a scientific news website completely unrelated to typical CFS/ME news - word is starting to spread about XMRV in all sorts of scientific research venues, which is great for us.

The other article is a very nice summary of XMRV basics, "An Explanation of XMRV Research So Far...", posted in one of the forums at Phoenix Rising by Bob.  If the scientific details have been confusing to you (as they have to most of us!), this is a clear and well-written summary of the basics to date.

Hope you have a great Halloween weekend!

Thursday, October 28, 2010

A Gorgeous Fall Day

The rain and dark skies finally left us today, leaving behind a perfect fall day, with bright sunshine, warm weather, and a cool breeze.  I brought my camera with me today when I took a walk, so I'm sharing some photos with you of the brilliant fall colors on display in my neighborhood.

Wait a minute...did you catch that?  Just in case you missed it...I TOOK A WALK TODAY!  It's the first time in months I've been able to walk all the way around my neighborhood, and I didn't even get out of breath on the hills!  I've been feeling absolutely great all week, and I feel like I've been reborn.

I'm not entirely sure why I'm feeling so well.  My best guess is that my latest addition to my Lyme treatment (Samento) is working.  I started it last week, went through about 5 days of feeling worse (i.e. herx reaction), skipped it on Saturday and Sunday so I would feel OK for my trip to New York, and I have felt really good ever since!  I also added a vitamin D supplement last week, after my latest labs (ordered by Dr. Levine) showed low-normal levels of D.  Maybe that is helping, too, though, the worsening last week makes me think the Lyme treatment is the major factor.  It's an on-going guessing game, isn't it??

The other thing making today such a great day is that Jamie finally went back to school and made it for a full day.  He went back last Friday about mid-morning but still felt run-down all weekend (of course, he pushed on so he wouldn't miss any fun with his grandparents).   He felt awful Monday morning, tried going in on Tuesday but only made it a couple of hours and was out again Wednesday.  He was feeling so down.  With this odd pattern of up and down and much more achiness than usual, I am quite certain that his crash has also been a herx reaction - he just started a new bartonella treatment two weeks ago.  This is actually great news - the first sign we've seen that his treatments for Lyme and co-infections might be working.  We're hoping some improvement will follow.

Thankfully, he got up this morning and was able to give it another try.  He surprised me by getting up and showering early, so I drive him to school at 7:15 and rushed back home to get Craig off to his bus (Ken has been out of town all week).  Jamie called me 10 minutes later, "Mom, school doesn't start until 9 am today."  Can you believe it?  Poor kid dragged himself out early and could have slept in!  The good news is that he lasted all day, and is even able to do some homework tonight.

And Ken came home this afternoon.  All in all, a very good day in the Jackson household.  Hope you enjoy the fall photos and are having a good day at your house, too!

Monday, October 25, 2010

Movie Monday 10/25

Another week gone by!  Last week was a rough one for us, as you well know if you read this blog regularly.  I was crashed, and Jamie, my 16-year old son, was also crashed badly most of the week.  He went back to school on Friday for a partial day and was able to enjoy some of the weekend, but he was back on the couch today.  I think it is, at least in part, a herx reaction to his latest bartonella treatment.  That's good news, but it doesn't make it any easier to get through.

We did enjoy the weekend, though.  My mom and her husband came to visit.  On Sunday, all the guys went to Baltimore for the Ravens-Bills game, while my mom and I took the train to NYC to see a Broadway show.  We also enjoyed a wonderful meal in a Spanish tapas restaurant.  It was a great day, and I handled it remarkably well, thanks to a long nap curled up across two seats on the train (sometimes it's good to be so short!).  It was a gorgeous day in New York.  Here's a photo I took in Times Square (sorry it's not very sharp - my camera phone is first-generation - it has an antenna that pulls out!)

So, with all those sick days last week, Jamie and I watched a lot of movies.  I showed him a bunch of old favorite comedies to cheer him up:
  • We kicked off the Sick Week Marathon with my favorite laugh-a-minute movie: Planes, Trains and Automobiles.  Steve Martin and especially John Candy are just hilarious.  Jamie loved it, especially the scene when the cop stops the burned out car (my favorite scene, too!)..."It may not look like much, but it gets me where I want to go."
  • The next day, we watched My Cousin Vinny, another favorite of mine.  Lots of good laughs in that one, too.  Marisa Tomei and Joe Pesci are fabulous in it.  I love the line about the "two youts..."
  • On Thursday, we watched Tootsie - Dustin Hoffman is so good in it.  Jamie enjoyed that one, too.
  • No time for movies this weekend, but my mom and I saw Next to Normal on Broadway, a stunningly good show.  It's a musical about a family torn apart by the wife/mother's bipolar disorder and depression.  I sounds like a horrible paradox, right?  A musical about mental illness?  But it was so good, with amazing music (it won the Tony award for best musical score) and great acting.  The story itself would make a good movie (the screenplay won the 2010 Pulitzer Prize), but seeing it acted out live a few feet in front of us was just incredible and emotionally powerful.
Have you seen any good movies lately?

Norwegian Study Finds XMRV in 62% of CFS/ME Patients Tested

Great news!  A new XMRV study was just published in Norway, confirming similar results to the original XMRV study done at WPI.  Here's an article explaining the findings:

Dr. Mette Johnsgaard of The Lillestrom Health Clinic tested 24 patients and 3 healthy controls for XMRV using the culture test and found that 14 were positive.

Of the negative tests, 11 were then retested with serology tests and 5 more positive results were found, bringing the total to 19 of 27. One of the positive serology samples was from a healthy control.

*The Lillestrom Health Clinic has now tested 80 patients and 50 are positive by either culture or serology test =96 a total of 62%.* This is very close to the 67% of positive patient results reported by Mikovits, Lombardi, et al., in* Science *in Oct. 2009.

The tests were done in cooperation with VIPdx labs in the USA.

More information about these results will be given on the 28th of November in Oslo at the XMRV/MLV seminar with Dr. Judy Mikovits. Details of the seminar can been seen here:  Register by writing to:

The Lillestrom Health Clinic is currently cooperating with many international ME experts in order to share knowledge about testing, treatment and research. Dr. Johnsgaard is also cooperating with
international experts who specialize in infectious diseases (Borna virus), retrovirology and biotoxic illnesses (Shoemaker), a probable secondary phenomenon in ME.

*In November 2010, the clinic will launch a large international research project on Human Gammaretrovirus and ME. *

In Aug. 2010, Dr. Johnsgaard was interviewed by NRK (Norwegian National Broadcasting) where she confirmed the two first positive XMRV patients in Norway. With that interview Dr. Johnsgaard opened the public debate about ME and XMRV in the Norwegian medical and political environment. The same day, Norwegian politicians and doctors reacted positively in a follow-up interview on NRK (see links below)

Virusfunn gir nytt h=E5p for ME-pasienter:

Another link with health minister Laila D=E5v=F8y - Regjeringen b=F8r gj=F8=re mer for ME-pasienter :

Lillestrom Helseklinikken is situated just outside of Oslo, Norway and specializes in the treatment of ME and other chronic diseases. They have recently begun treating patients from outside of Scandinavia.  
Kind regards,


The European Society for ME is a non-profit group, operated entirely by volunteers. You can support ESME with a donation by visiting:
Sue again...just wanted to point out that the methods used in this study are those that Dr. Mikovitz was explaining in her presentation at the NJ Conference last week:  culture tests and using multiple methods to find all of the XMRV in all of the samples.

Friday, October 22, 2010

Another Big Weekend

Just wanted to say a quick thank you to all of you who have commented or e-mailed me this week.  As always, you have been so wonderfully supportive, and I greatly appreciate it!

I am fine.  All of your comments are right on target - I have no idea why some people feel the need to lash out, but it's hard not to be affected by it.  I told Ken I knew I was as upset as I was in part because I was also crashed and not feeling well.  It's so hard to keep your emotions in check when you're feeling so poorly.  But all is well now.  You've reminded me that I'm not writing this blog for people who already know everything there is to know about the latest research (and are itching to "catch" someone else in getting it wrong)....I'm writing it for you, my friends, many of whom are unable to leave your homes to attend a conference like this or are unable to read through long, technical papers to figure out what is going on.  I'm also writing it for myself because the warmth and friendship you've all shown me over the years has made a big difference in my life.  Thanks!

As for me, I'm still somewhat crashed and still wondering how much of it is from the conference and how much is a herx reaction to a new Lyme treatment.  Jamie was flat on his back most of the week but returned to school mid-morning today (hurray!).  It hurts me so much when he is that sick.  I would gladly take all of his symptoms and double mine, if he could be well.  Hopefully, he's on the mend now.

Unfortunately, we have another big weekend coming up.  My mom and her husband are coming into town tonight.  All the "boys" are going to the Ravens-Bills game Sunday in Baltimore, so my mom and I are taking the train to NYC to see a play.  I love a day in NY with her, but I'm worried I'm not yet recovered enough for it - it means another long Sunday without a nap.  She's actually staying with us until next Thursday.  Next week should be our last really hectic week - it's the last week of soccer for Craig, and the last week (for a while) with evening school functions to attend.

I just remembered my plan for dinner tonight was to make something in the crockpot this morning...which, as you may have guessed, I totally forgot to do!  So I better get busy.

So, I know I'll be too busy for blogging this weekend.  Hope you all have a wonderful, restful weekend!

Thursday, October 21, 2010

Further Clarifications to Mikovitz's Presentation at NJCFSA Conference

Much to my dismay, I have received more messages alerting me to other facts I got wrong or misunderstood or mistyped in my summary of Dr. Mikovitz's XMRV presentation at Sunday's NJ CFSA Conference.  Apparently, my mistakes are being discussed all over the internet. 

I've come to feel as if this blog is our own little, private place to communicate with each other - me and all of you who comment or send me messages - a place for friends to chat honestly and openly.  But, of course, nothing on the internet is private, and I should be more aware that anything I say here can (and will) be copied and repeated...forever.

So, in the interest of accuracy, here are some further corrections and clarifications:
  • WPI found antibodies AGAINST, not IN, the envelope protein of XMRV. (I told you I didn't understand what she meant by envelope!)
  • The first studies to detect XMRV (Urisman et. al) found partial sequences of XMRV (that is all that can be determined from PCR). WPI has since fully sequenced XMRV.
  • Xenotropic doesn't mean human, it refers to a virus that can grow in the cells of a species foreign to the normal host species. Other mammals can have the XPR1 receptor too.  However, in her talk, Dr. Mikovitz DID emphasize that XMRV and PMRV are found in humans but not in mice.  Further, I misstated that MLV's are not mouse viruses (I got the terminology mixed up).  In fact, MLV's are mouse viruses, but there is confusion about this because MLV-related viruses (e.g. XMRV and PMRV) are not MLV's and not mouse viruses.  So, XMRV and PMRV are not MLV's (not mouse viruses) but they are only MLV-related human viruses.  Follow that?
  • It was Tufts, not Johns Hopkins that tested 75 mouse strains.
  • Retroviruses are not "constantly changing", but may recombine with other RVs or mutate over time.
  • Cheney clinic is in Asheville, not Dallas.
 Once again, my sincere apologies for getting some of the facts wrong.  Please understand that this was a 90-minute long talk, Dr. M spoke very, very quickly, and as I explained before, much of the technology and terminology was new to me.  Copies of her slides were so tiny that I literally can't read them at all, so I relied solely on my own notes.

Thank you to those readers who have stood up for me in various public forums and who took the time to kindly help clarify these points.

(No comment to those who left me nasty messages!)

Corrections: XMRV Presentation by Dr. Mikovitz

It has been brought to my attention that I incorrectly implied in my conference notes yesterday that Dr. Mikovitz "discovered" XMRV.  She was not, in fact, the first researcher to discover this new retrovirus.  She began her presentation by crediting Bob Silverman & Eric Klein with the discovery of XMRV. 

Also, I mis-stated that Dr. Mikovitz didn't expect to find XMRV in ME/CFS patients - immune system abnormalities in XMRV positive prostate cancer patients made her think it might be implicated in CFS as well.

It seems I should have just skipped the history section of my summary yesterday...sigh...she covered that stuff briefly at the start of her talk (and she speaks really fast!!), so I didn't have thorough notes.  The rest of her presentation so blew me away that I was focused on all of that.

Sorry for the mistakes and any confusion.

Wednesday, October 20, 2010

NJ CFS Conference - Update on XMRV by Dr. Mikovitz

Thanks to everyone for letting me let off some steam and rant yesterday (not that you had any choice!).  I'm doing better emotionally today and a bit better physically, though I still have crash symptoms (which could also be herx symptoms from a new Lyme treatment - hard to tell).  Jamie is still badly crashed, which again is probably both from over-doing and herx reaction from new bartonella treatment.  More movies today, but I insisted on a TV-free hour so I could write a bit!!

So, I will attempt to summarize for you the most important points from Sunday's NJ CFS Association Fall Conference.  In looking over my notes, I realize that, although all the speakers were good, most of the new information I learned came from the XMRV update from Dr. Judy Mikovitz, the author of the original XMRV study and head researcher at the Whittemore-Peterson Institute, so I'll focus my summary on that.  Some of what she presented was in direct response to criticisms presented at last week's CFSAC meeting, so I'm covering the last conference first.

As I mentioned on Monday, Dr. Mikovitz's presentation was extremely technical and she spoke very quickly for over an hour.  I have a scientific background, and much of the details she discussed went over my head, so I'm going to focus here on the bottom lines and her conclusions - sorry in advance if I can't explain the details behind these or if I get something a bit mixed up!

XMRV - History
  • Dr. Mikovitz' father (or maybe step-father) died of prostate cancer, so she devoted her career and life to finding the infectious agent responsible.  She's been working in this field for over 20 years.  Certain immune system abnormalities in those who were XMRV positive made her wonder if it might also be implicated in ME/CFS.
  • Dr. Mikovitz also worked on HIV for many years and has a lot of experience with that retrovirus.
  • Because other known retroviruses, like HIV, tend to mostly affect B and T cells in the immune system, that's where they first looked for XMRV - turns out those are NOT the best places to find XMRV.
  • The body's antibody response to XMRV is very different from the response to HIV, so you have to look for it in different places within the immune system (WPI found antibodies "against the envelope protein of XMRV" - I didn't entirely understand what this meant but it's important and she emphasized it often).
  • The first studies to detect XMRV found only sequences or parts of the retrovirus.  WPI has since fully sequenced XMRV.
  • There are two types being found: XMRV and Polytropic MRV (which were found in the more recent FDA/NIH study).  Polytropic MRV is also referred to a PMRV.
  • Although MRV (MLV-Related Retroviruses) have Muerine (i.e. mouse-related) in their name, Dr. Mikovitz emphasized that these retroviruses are not mouse viruses; they are only related to mice (MLV are Muerine Lukemia Viruses)  XMRV has ONLY been found in humans, not in mice (this is important in discussions of possible contamination later).  Tuft University has studied 75 types of mice, both those bred in labs and those found in the wild, and these retroviruses do NOT exist in mice.

Why is XMRV so hard to find and why are so many CFS/XMRV studies coming back negative?
  • XMRV is showing great sequence diversity (at first, only sequences or parts of the retrovirus were found) - retroviruses can change, and different sequences or parts are present in different people and in different parts of the body.
  • Patient selection criteria differs in different studies.
  • Methods used in different studies so far differ GREATLY.
  • WPI/Mikovitz first looked in B and T cells and found only partial sequences of XMRV and not very frequently.  It is standard procedure to look for retroviruses by looking for their DNA in cells (this method is called PCR).; however, they have found that XMRV is not always detectable this way.
  • Next, WPI tried looking in plasma and they found more that way - not all studies have used plasma.
  • How the samples are handled after they're drawn and before they're tested is critically important - it's easy to kill XMRV in the samples if they're improperly stored and handled.  Storage and handling have differed greatly in different studies.
  • WPI has determined that some samples are negative by PCR testing (a method that looks for the DNA of the retrovirus) but are positive using alternate methods.  Some studies have ONLY used PCR.
  • One of the methods commonly employed to find XMRV will only find it 10% of the time.
  • WPI has found that it is necessary to use multiple methods of detection in each study in order to find all of the XMRV - most negative studies have used only one method.
What About Contamination?
  • Some people are claiming that the positive XMRV studies in CFS are positive due to contamination of the samples in the laboratory.  Dr. Mikovitz addressed this argument.
  • WPI tested ALL samples for mouse DNA and there was no evidence of contamination (plus, remember that XMRV does not actually exist in mice!).
  • Both the WPI and the FDA/NIH studies rigorously ruled out contamination with extra testing.  ALL of this data was included with the original papers, even though there wasn't room to publish all of the background data.
 UK XMRV Study
  • WPI started a study in March 2010 to look for HMRV (Human MLV-Related Viruses - both X and P) in UK ME/CFS patients.
  • The study included 50 patients with ME who met the Canadian Consensus Critera, 50% male and 50% female, along with 50 controls.  It was a blind study.
  • The 100 samples were tested blindly by two labs who had never worked with MRV or mice (to ensure there was no possibility of contamination).
  • The labs first tested plasma and 48% of the ME plasma samples were positive for XMRV (all were also tested for mouse DNA and were negative).  Other samples were detectable only after culturing (some sort of special sample preparation).  In some samples, only the virus was detectable; on others, only the antibodies were detectable.  Multiple testing methods were necessary in order to find all of the XMRV positive samples.
  • In all, 80% of the ME patients in the study were positive for XMRV.
  • 4% of the controls were also positive for XMRV (in line with the original WPI study).
  • Dr. Mikovitz emphasized that the XMRV was very difficult to find.  They have learned that subtle differences in storage, handling, and testing make a big difference and that multiple methods must be used to find it all.
XMRV Family Studies
(This is the part of the day that totally blew my mind)
  • In January 2010, WPI did a study using samples from Dr. Cheney's clinic.  They tested not only CFS patients but also their families, including children, parents, and siblings.
  • 81% of the Cheney CFS patient samples were positive for XMRV.
  • Ready for this?  50% of all family members of CFS patients were also positive for XMRV, whether they had any symptoms or not.
  • They constructed family trees for each family.  In addition to people with CFS, they also looked for family members with cancer and autism.
  • They found XMRV positive: parents with CFS kids; kids with a CFS parent; kids with autism.
  • In all, 54% of the parents tested were XMRV positive, 59% of the children tested were XMRV positive, and 82% of the kids with autism were XMRV positive.  They detected additional XMRV positive people in 16 of 17 families tested who had 1 member with CFS.
  • Detection of XMRV in these samples required multiple testing methods to find it all.
  • They have no idea how XMRV might be transmitted between family members.
  • By the way, the possible link between CFS and autism is not new.  Other researchers have suggested it in the past because they see similar immune system dysfunction in kids with autism.
(This part is really disturbing to me.  I like to believe that people are generally good and do what they believe to be right.  I know that's not always the case.)
  • Are you wondering why we haven't heard about the amazing studies conducted by WPI in the UK and with families from Dr. Cheney's clinic?  Dr. Mikovitz says no one will publish them.  She said they keep submitting papers to various publications and they keep getting turned down.  There has been some confusion on this point in various discussion forums, but this is what Dr. Mikovitz stated during her presentation - that they can't get any of their papers published - I'm assuming that includes these two studies she described.
  • Dr. Mikovtz said what's happening with XMRV and CFS reminds her very much of the early days of HIV research.  She said that just like back then, she has a drawer full of scientific studies no one will publish, but she will just keep on conducting studies and putting them in the drawer until things change.
  • Dr. Mikovitz also said that some of the people who've been suggesting contamination are people who were involved with the original studies and who saw all of the original data, including those which proved contamination was impossible.
  • Other speakers also mentioned that politics are involved.  The prevailing theory seems to be this:  if the CDC confirms that XMRV, a new, dangerous, and transmissible retrovirus, is present in people with CFS (and the CDC has estimated the number of adults in the US with CFS to be 4 million), then they have a huge public health crisis on their hands.
  • Dr.  Mikovitz says that the evidence of XMRV in CFS is actually stronger than the evidence of XMRV in prostate cancer because of the more extensive testing methods used to date.
  • Rumor is that the National Cancer Institute (NCI) has been told by someone high up in the government to pursue whether XMRV is involved in prostate cancer but should distance themselves from CFS.  Though I hate to believe something like this could actually happen, the speaker from NCI at CFSAC last week was the one who suggested that contamination might be responsible for the positive XMRV results in CFS.  Dr. Mikovitz said that person has seen all of the data proving contamination is impossible.
OK, I think that covers it.  Sorry this turned out to be so long, but I think it is extremely important for all of us to understand.   Hope you find this as enlightening as I did.

NOTE:  A few kind readers pointed out some errors I made in the above summary after I posted it, so I have corrected them as of 10/21/10.  Thank you to those who were kind enough to offer me their assistance.

Tuesday, October 19, 2010

Tired Tuesday

Jamie and I were both badly crashed today - him from soccer and his Homecoming dance (that's him on the right with his friends) and me from the conference Sunday.  I also have my period this week which always causes a bad CFS flare-up, plus killer headaches.  We tried to just rest and recover today, but we're both still feeling crappy.

I'm feeling pretty bummed.  Ken just picked Craig up from soccer practice, ran in and ate dinner in 20 minutes (thank you, Trader Joe's!), then ran out the door again for Craig's middle school open house.  I hate that I'm missing it.

I'm so sick of missing out on things!  I'm sick of my family missing out on things because of me.  I'm sick of Ken having to do everything.  I'm sick of always feeling sick!!!

I hate this stupid illness - it sucks!!

Thanks for letting me vent...

Monday, October 18, 2010


Notice that it's not a Movie Monday?  Sorry about that, but we had no time at all last week for movies.

Ken was away all week, so I was going to bed at 9 pm so that I could manage to get up at 6 am to get both kids off to school.  On Friday evening, we watched a couple of our favorite TV shows that I taped while he was away (yes, I do actually mean tape literally - we still use a VCR!), and Saturday was another early night for me because I had to get up early on Sunday...and that is the big story of my weekend.

I spent all day Sunday attending a CFS Conference sponsored by the NJ CFS Association.  I left my house at 7:45 am and got home at 11 pm!!  I never could have done this on my own.  I was accompanied by two wonderful friends who have kids with CFS who helped with the driving.  I wasn't able to actually sleep because I was too wired, but I did lie down and rest in the car on the way there and back, so that helped immensely.  Otherwise, I wouldn't have made it through the long day.

The conference was excellent, and I am bursting to tell you all about it, but I am just too exhausted today to get into the details - tomorrow, I promise.  The speakers were excellent, including my own Infectious Disease doctor, Dr. Susan Levine, and the top XMRV researcher from WPI, Dr. Judy Mikovitz.  It was especially powerful to hear the details on XMRV directly from Dr. Mikovitz.  Despite that fact that her presentation was highly technical and much of it was over my head (my background is in chem, not bio!), it still clarified things far more for me than the past year of reading articles and trying to figure out what's going on.  After hearing her talk yesterday, I am extremely excited about the XMRV research - it is definitely present in the blood of people with CFS in both the US and the UK, and they are also finding it in the blood of people related to those with CFS (the family part of her talk just blew me away).  Sorry to provide such a teaser without the details, but this is about the extent of my energy for today.

It was a great day, and I promise to type up my notes tomorrow when I have more time and energy.  Now, it's off to a quick lunch, hopefully a long nap, then pick Jamie up, take him to the dentist, then rush to Craig's soccer game...see why I can't waste energy writing much today??  More tomorrow...

Friday, October 15, 2010

CFSAC Proposes Name Change!

Sorry for not posting much this week.  I know you're all eager to hear more about the CFSAC meeting.  I've just been incredibly busy taking care of the kids and the house on my own this week.  Besides all the usual school and soccer stuff, both boys had two days this week when they got out of school early, Jamie had an orthodontist appointment, and our cleaning service came yesterday (which means I had to scramble to pick up all the stuff still all over the floor from last weekend's camping trip).  This morning, I need to head out to the grocery store.  Thank goodness Ken comes home today - hurray!  I've missed his help and also his company.

So, just  quick post this morning.

The biggest news from the CFSAC meeting was a unanimous vote to change the name of the committee immediately to ME/CFSAC and to request an official name change to ME/CFS from the US government's Department of Health and Human Services.  Yay!!  It's about time.  Here's a news article with details of the proposed name change (thanks for forwarding the news article, Martine!)

And, here is the page with links to videos of all 3 days of the CFSAC meeting (see Archived Video links at the bottom).  I highly recommend the first day, the Science Day presentations.  There were no politics or boring meeting formalities on Day 1, just a series of very informative presentations from CFS expert doctors and researchers.  I watched most of Day 1 (except for the afternoon during nap and Craig's soccer time), and I promise to post my notes when I have a bit more time (probably next week but maybe later today).  I also recommend the public comment periods on Days 2 and 3 (10:45 am on Day 2 and 1 pm on Day 3).

So, that's it for now.  Another busy day with more driving kids around!  On Sunday, two local CFS moms and I are going to attend the New Jersey CFS Association's Fall Conference.  The line-up of speakers looks great, including my own ID doc.  It will be a long day for me, but one of my friends is doing most of the driving, so I'm hoping I manage OK.  Plus, we have soccer games, friends over, and Jamie's homecoming dance this weekend...whew.

Hope you have a good weekend!

Wednesday, October 13, 2010

Update on CFSAC Meeting

I spent most of yesterday watching the first day of the CFSAC meeting, broadcast live over the internet from Washington, DC.  It was their first-ever Science Day, a day filled with presentations from the top CFS scientists and doctors on the latest research.  It was excellent and so amazing to be able to watch the whole thing while lying on my couch!  I had wanted to go in person but am flying solo this week while Ken's traveling.  I also turned out to be fairly badly crashed the past two days, so I was extra-grateful for the webcast.

Much of today's meeting is focused on disability benefits and Social Security - topics that don't affect me directly - so I left the couch for a short while and joined a friend on a Trader Joe's run (with Ken away, I had to stock up on ready-to-heat meals!).  However, I did rush back home in time to tune in to the public comment period.  I'm so glad I did.

Hearing the heartfelt testimony and pleas of long-suffering CFS patients was very moving - I broke out in tears several times.  The highlight of the testimony (in my biased opinion!) was a friend of mine, one of our local CFS moms who has two teen boys, 17 and 19, with severely debilitating CFS.  She and her boys made the trip to DC.  I cried so hard through her entire 5 minutes that I could barely see the computer screen!  Her testimony about what daily life is like for her and her boys, including some of it in their own words, was powerful and heartbreaking.  You did a great job, Denise!

The meeting is on lunch break now but resumes again this afternoon at 1 pm eastern time, then continues again tomorrow morning at 9 am.  I highly recommend you watch at least some of it.  The second public comment period begins tomorrow afternoon at 1 pm.  Here is the full meeting agenda so you can tune in for the parts that interest you.  The technology is very cool!  I use a Mac and had to download an extra application to watch it, but it only took a couple of moments.  I know Jo logged in from the UK to see part of it yesterday, so it's available to anyone on the internet.  Here's the link for the live videocast

I will post my own summary, plus links to the presentations and online videos once they are posted.  I was just so amazed by what I've seen that I wanted to share a bit with you while you still have a chance to watch live.

Lunch time, then nap, then Craig's soccer game...

Monday, October 11, 2010

Movie Monday 10/11

Not much time for movies this week.  After a busy week, we spent a wonderful weekend camping with good friends at Elk Neck State Park in Maryland, along the Chesapeake Bay.  The weather was gorgeous, the company was wonderful, and we all had a great time.  Craig brought a friend along, and Jamie's three best friends were there (and, coincidentally, their moms are my best friends!).  We walked along the beach and enjoyed sitting around a campfire at night.  I just love being outdoors (I wrote about the Joy of the Outdoors in a previous post).

I actually felt really good all weekend and was thrilled to be able to enjoy my friends' company.  I paid a bit today, though.  I went on the shortest, wimpiest little hike yesterday - I circled back to the car after about 10 minutes while our friends continued on - but I guess it was too much.  Just walking back and forth to the restroom while camping is far more walking than I normally do!  There are fewer responsibilities and "maintenance activities" (like shopping, errands, cooking big meals, cleaning, laundry) while camping, so I usually do pretty well.

So, with all that lovely time outdoors, we didn't watch any movies this weekend, but I did watch one during my lunches this past week:

  • I watched The Diving Bell and the Butterfly, based on the amazing memoir by Jean-Dominique Bauby (see my review of the book).  This is an incredibly inspiring book written by a man with locked-in syndrome who wrote the entire book by blinking one eye, spelling out each word, letter by letter.  I previously posted some favorite quotes from the book on a Quote It Saturday feature.  The movie was also excellent and really complemented the book.  Seeing his disabilities visually was very powerful, as was watching him dictate letter by letter, painstakingly.  I know it sounds depressing, but as I wrote in my review of the book, it's really not - sad, yes, but not depressing.  His spirit and will to live were inspiring, and the movie showed a bit more about his early days of feeling angry, frustrated, and full of self-pity - something anyone with CFS will recognize - followed by his acceptance of his condition.  I highly recommend both the book and the fact, watching the movie makes me want to read the book again!
Have you seen any good movies lately?

CFSAC Meeting Online

The U.S. Department of Health and Human Services is hosting another Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting this week, Tuesday through Thursday, in Washington, DC.  I had hoped to go, but I'm on my own with the kids this week, so I can't risk the almost-certain crash that would likely result. 

Fortunately, there's an alternative for those of us who can't manage a trip to DC - the entire 3-day meeting will be broadcast live through the internet - tune in at this webpage.  Of particular interest is tomorrow's agenda - for the first time ever, the CFSAC is starting with a Science Day - a day filled with informative presentations from some of CFS's top doctors and researchers (including one on XMRV).  Check out the all-star line-up on the agenda.

So, I plan to tune in for much as I can tomorrow (working around nap time, of course) and parts of the next two days, as well (especially the public comment periods).  A friend of mine is attending and giving public testimony; she's one of our local CFS group and has two teen sons with severe CFS.  I'm sorry I couldn't accompany her to the meeting, but the videocast seems like the next best thing!

Wednesday, October 06, 2010

Supplements for CFS

On my recent post about supplement safety, I promised to tell you about nutritional supplements I take for CFS.  I've been putting this off for a long time just because it's a long list!  (NOTE:  This photo is a couple of years old.  I thought we took a lot of pills then - ha!  Now, with Jamie and I both having Lyme, plus CFS, I fill a total of 12 pill reminder boxes each week for the 3 of us!!  (Craig only uses one).  This post is only about the supplements we take; there are also lots of prescription medications.

For starters, I have a list on my computer (one for each of us, myself and my sons) of all of the medications and supplements we take, with columns for Name, Strength, Dosing, and Reason.  I include everything on these lists - prescription, over-the-counter, and supplements - because they all have side effects and interactions.  I carry copies in my purse in case of emergency and give an updated list to the doctor each time one of us has an appointment.  The doctors love it!

Before I list what I take, I have to put in my two cents about so-called natural products.  With a background in chemical engineering, I can tell you with confidence that everything, including medications and supplements, is made of chemicals (even water!).  I know some people prefer supplements to pharmaceuticals because they are "natural", but in my opinion, you're much safer with medications, if there is one available for what you need.  Pharmaceuticals have to undergo rigorous testing before they are made available and generally only contain one active ingredient.  There are no similar safety nets in place for supplements and herbals.  In addition, natural does not necessarily mean safe.  Since there are no regulations, many natural products contain pesticide residue or other harmful unintended ingredients.  You should use great caution before starting any kind of supplement because there are no regulations at all in place for ensuring safety nor for labeling dangerous side effects (hence, the Consumer Reports study on safety of supplements).

The supplements I take are those that have some sort of research behind them indicating they might be of help to someone with CFS.  Before I start any new supplement, I check several sources to verify that it is safe, that there are no dangerous side effects, and that it will not interact with what I already take.  For instance, some supplements touted for energy also lower blood pressure as a side effect - good for most people but bad for those of us with CFS!  Here are a few of my sources:
All of these websites have lists of supplement data sheets, but often the ones for CFS are less common.  I also have a big reference book here at home.  For checking both information and interactions, Drug Digest is a great resource.  If you click on Check Interactions, you can enter ALL of the medications and supplements you take.

So, the following all have some sort of research behind them on efficacy, and I've checked that they don't interact with other medications or supplements I take.  Generally, I try something myself first (before using it on my kids), and I try to stick with only those where I see some improvement or where the research on helping CFS is overwhelming.  Still, I worry that we're throwing our money away!

Here's my list of supplements and why I take them:
  • Licorice root - orthostatic intolerance (increases water retention and blood pressure)
  • Multi-probiotic (I take All-Flora by New Chapter because it is dairy-free) - immune system support, GI problems
  • RM-10 (mushroom blend) - immune system dysfunction
  • Multi-vitamin - general health
  • Alpha Lipoic Acid - Strong anti-oxidant for mitochondrial dysfunction
  • Acetyl-L-Carnitine - ditto (I take a combination pill that combines both of these)
  • Calcium (with D and Mg) - because I can't have dairy
  • Milk Thistle - glutathione depletion and liver support (anyone who takes lots of medications and supplements should take milk thistle)
  • N-Acetyl-L-Cysteine (NAC) - glutathione depletion (I really noticed a difference with this one)
  • Coenzyme Q10 - mitochondrial dysfunction, cardiac support
  • Olive Leaf Extract - strong anti-viral, antibiotic, and anti-fungal (everyone in our family takes it whenever they have been exposed to a virus or feel a cold starting)
  • Valerian - a very mild sedative that I take before nap time; for me, its effects only last an hour
  • D-ribose - mitochondrial dysfunction/energy and exercise intolerance (Jamie and I have definitely noticed a difference since we started this a few months ago)
  • Epicor (hydrolyzed yeast extract) - immune system dysfunction (this one is new for me - the jury's still out but it's supposed to increase Natural Killer cell function and improve immune function)
In addition, my Lyme doctor added:
  • Artemisinin - supposed to help the antibiotics penetrate tissues where the Lyme hide out
  • ADP (emulsified oregano - yes, oregano!  it smells just like the spice) - strong anti-viral, antibiotic, and anti-fungal
My sons don't take all of these (Jamie takes most; Craig none), but they also take Thermotabs (salt tablets).  I can't because they upset my stomach.

Whew.  See what I mean about worrying about wasting money?

This is just what has worked for me, but I need to emphasize that nothing on this list has made a big difference, just small, incremental improvements.  A few I take on faith because the reserarch says they help, but I haven't actually noticed a difference.  Please don't take this post as medical advice because we are all different.

Before starting any new supplement, you should always check out its side effects and interactions and always talk to your doctor first.  Hope this is helpful to you.

Oh, and I'd love to hear from any of you who have found a supplement that has helped you.

Tuesday, October 05, 2010

Recovery from CFS?

I volunteer to answer questions about CFS on AllExperts, and most of the time, I can handle the questions I get about symptoms, treatments, doctors, etc.  But I got one last week that really stumped me.  I want to share it with you for two, to see whether any of you have answers for her, and two, to show all of you that recovery from CFS is possible and does occur.

Here is her question:

I was ill with CFS for 4 years, but for the last year or so
have had no symptoms, and have considered myself recovered.
However, in the last month I haven't been feeling as good -
nowhere near as bad as before, but I've been having
headaches and nausea, and my energy levels have been a lot
lower. I've seen my GP and they've ruled out other things
and have said it sounds like the CFS again. I recovered the
first time round by pacing really carefully and getting a
lot of rest, and once I was feeling much better introducing
some gentle exercise. I've started pacing again, and this
seems to be helping a bit, but not completely.
I've got 2 questions; first, is there anything else I should
be doing to avoid relapsing more? Second, if and when I feel
like I'm over this, how long should I carry on pacing myself
for? In the last 4 or 5 months I'd stopped resting/pacing
much, and this didn't seem to have any negative effect until
now. Once I'm recovered, how important is it to carry on
resting, and how much rest do I need to get?
 Quite a story, right?  I wasn't able to provide her with much information.  Dr. Bell told me a few things.  First, that a lot of people get CFS and recover within a year or so and are never diagnosed accurately in the first place, so we really don't know how many there are.  He's done some studies on recovery, but his study participants mostly got CFS as children, and children have a better chance of recovery than adults (I remind myself of that often!).  Other than his pediatric study, I don't think there's much data on recovery.  He also told me that the best chance of recovery is in the first 5 years of illness, so she fits in that category.  Also, there are higher recovery rates for those who had sudden onset and for those whose symptoms vary day-to-day.  Other than that, I don't know much about recovery.

Do any of you know more about recovery, relapse, and the questions she's asked?  Any insights or experience would be appreciated.

Monday, October 04, 2010

Movie Monday 10/4

Happy Birthday to my husband, Ken!!  I love this picture of him (almost 20 years ago now - yikes, it seems like just last year).  We spent the afternoon in the cold, pouring rain watching Craig's soccer game - brrr!  But we're warm and cozy now, filled with chili and cornbread (his choice for his birthday dinner and the absolute perfect meal for a cold, wet day!)  Almost time for his birthday pie (he loves pie) and gifts.

We had a busy weekend, but we fit in a couple of movies:
  • We watched Fantastic Mr. Fox with the kids Friday night.  None of us had read the Roald Dahl book the movie is based on, but it clearly showed off the author's usual clever wit.  George Clooney is the voice of Mr. Fox, and Meryl Streep is the voice of Mrs. Fox in this sort of folk tale starring animals in human-like roles with an old-fashioned kind of stop-action animation.  Clever, funny, and very amusing.
  • Saturday, while the boys were at a high school football game, Ken and I watched The Notorious Bettie Page, based on the real life of a young woman from Nashville who became known as The Pin-Up Queen of the Universe.  The movie is as much about the pop culture and mores of the 1950's as it is about Bettie herself.  The fascinating irony of this story is that Bettie was actually a very sweet, naive, and religious woman who found herself at the center of an indecency scandal.  We enjoyed it.
Have you seen any good movies lately?

Sunday, October 03, 2010

Report on Supplement Safety

Sorry I haven't been online much lately.  We've had a very busy weekend, plus I really haven't been feeling well - not horrible but not good either.

I just thought I'd share a report I heard on NPR last week, about a recent Consumer Reports test and report on supplements.  Since many of us with CFS take nutritional supplements - vitamins, herbals, etc. - I thought this would be of interest.  We certainly take a lot of them here!

Here's the full article from Consumer Reports.  Within that article, they've included this list of 12 dangerous ingredients in supplements that are either often contaminated or can have serious side effects, based on their review of hundreds of clinical research and reports.  Nothing that I take is on this list, but I thought it might be helpful to others.

The article also includes a list of eleven supplements that are not only safe but also have extensive research behind them to prove they are effective.   The chart also includes potential side effects and interactions with other medications for each supplement.  I found this page particularly helpful.

Another day, when I have more energy, I'll list the supplements I've found helpful.  Hope you've enjoyed a nice, relaxing weekend.