Monday, April 30, 2012

CFSAC Meeting Scheduled for June 13 - 14

The US Department of Health and Human Services has announced dates for the "spring" meeting.  The details are reprinted below.  They are not yet accepting requests for public comment; I will let you know as soon as they do.  If you plan to participate in the CFSAC meeting in any way (in person, by phone, by submitting a DVD), please contact Denise at Speak Up About ME by e-mail at speakupaboutme at gmail dot com.

"Chronic Fatigue Spring Meeting -

The Chronic Fatigue Syndrome Advisory Committee (CFSAC), 2012 spring meeting will be held on Wednesday, June 13, 2012 from 9:00 a.m. until 5:00 p.m. EST and Thursday, June 14, 2012 from 9:00 a.m. until 5:00 p.m. EST.

The meeting will be held at the U.S.  Department of Health and Human Services, Hubert Humphrey Building, 200 Independence Avenue, S.W., Room 800,  Washington, D.C. 20201.  For directions please visit

The meeting will be webcast live and available by audio (listening-only). Additional information and the CFSAC agenda will be posted to the CFSAC website by June 4, 2012.”"

Wednesday, April 25, 2012

Looking for Feedback on Word Verification

Hi, all -

I have noticed lately that Blogger's word verification has become more difficult (and presumably more secure).  I don't really have cognitive problems most of the time, yet I've been having trouble with it on other blogs, often needing 2 or 3 tries to get it right.

So, I'm concerned about you, the readers of my CFS blog, many of whom probably suffer much more debilitating cognitive dysfunction than I do.

I always use word verification because when I turn it off, my blogs get deluged with spam - much of it in Chinese characters!!

But, I have turned it off temporarily to poll you.

So, please leave me a comment here about how difficult word verification is for you.  In particular, PLEASE tell me if you do not normally leave comments BECAUSE of the word verification.


New CFS Brain Study Shows Reduced Activity

My Yahoo Alerts e-mail this morning was filled with articles and postings on a brand-new CFS study just released (but not yet published) by the CDC (believe it or not!).  Here's a summary of the study (pretty brief and easy to understand).

This is an interesting one.  They used an MRI to measure brain activity in a part of the brain that is responsible for motor activity, motivation, and feelings of reward.  Not surprisingly,  the CFS patients in the study had far less blood flow to this area of the brain during the test (where subjects were told they'd win money when a certain type of card was chosen). 

Several interesting points stand out here to me.  First, the study was conducted by the chief of the CDC's chronic viral diseases branch!  This is the first time I've even heard of this department, and it sure beats having CFS buried in the women's health department.

The author says it's not clear whether this reduced brain activity is a cause or effect of CFS, but I think it's very clear that this is an effect, closely connected with Orthostatic Intolerance/autonomic dysfunction which involves reduced blood volume overall and reduced blood flow to the heart and brain specifically.

And, perhaps most fascinating of all, is the fact that this particular area of the brain is associated with motivation.  I've often written here of the horrible, hard-to-describe lack of mental energy that occurs with crashes or flare-ups of ME/CFS.  I think we've all experienced the crushing lack of motivation that accompanies CFS (and many of us have blamed ourselves or had doctors or others tell us we're lazy).  It's nice to have some biological evidence to back up what we are experiencing.

Just an interesting little tidbit from today's news.  I know I haven't been writing much lately, but I've been really exhausted and overwhelmed.  We've had house guests since Friday, and I have been working frantically on a major writing project.  I hope you are all doing well this week!

Thursday, April 19, 2012

Big News: I Am Lyme-Free!

One of the many things keeping me busy this week was our monthly trek up to our Lyme doctor in New Jersey yesterday.  The first thing I said to the doctor during my part of the appointment was, "Well?  Now will you pronounce me officially cured??"  I quit all my Lyme medications on January 1, and at my appointment in February, he wasn't willing to commit yet.

But, yesterday, he pronounced me officially graduated from my Lyme treatment!  The office even gave me a caramel-covered lollipop to celebrate :)

For those new to my blog, this celebration was a long time coming. 

I have had CFS for 10 years now, since March 1, 2002.  About 3 1/2 years ago, I suddenly had some new symptoms - nausea and knee pain - and I knew immediately that I had gotten Lyme disease.  However, my antibody blood test came back negative (which is the case for many people with Lyme disease), and my doctor refused to give me antibiotics.  A sobbing outburst followed (mine), and - to make a long story short - eventually, my doctor did agree to try antibiotics.  She saw that I responded to them immediately - first with a few days of all of my symptoms disappearing, followed by a sudden worsening of symptoms (the classic herx reaction) - and she agreed that I did have Lyme disease.

Despite her initial reaction, she is actually an excellent doctor who does understand the complexities of Lyme disease, so when my symptoms returned after quitting antibiotics after several months of treatment, she said, "I feel comfortable treating you with the standard protocol (200 mg daily of doxycycline pills) for up to 6 months, but if that doesn't work and you need something different, you will need to go see a Lyme specialist.  You'll have to go out of state - there's not a single Infectious Disease doctor here who will treat Lyme disease without a positive blood test."

So, I took her advice and asked around and found a Lyme specialist about 90 minutes away, in New Jersey, who could see me and seemed to be well-respected and not an extremist.  He immediately doubled my dose of doxycycline.  I tried quitting antibiotics again about a year later, and again, my Lyme symptoms (mainly nausea and knee pain plus worsening CFS symptoms) returned.  At that point, he began adding additional medications and supplements to my regimen, designed to get at the Lyme spirochetes (a type of bacteria similar to that which causes syphilis) that were hiding in my tissues.

Finally, this January, after 3 1/2 years of treatment, I tried stopping all Lyme meds again, and this time, it worked!  At that point, I was taking an extra 28 pills a day, just for Lyme, in addition to everything I take for ME/CFS.  The high-dose doxycycline caused horrible side effects, including nausea, vomiting, and extreme sun sensitivity.  I was so relieved to quit all that on January 1!  It is such a pleasure to be able to go outdoors without covering every millimeter of my body from the sun.

So, that's my story.  It's an unusual one, since I had CFS first and then got Lyme 7 years into it.  Lyme and/or its co-infections are very often misdiagnosed as CFS, and Lyme is also one of many known triggers for CFS.  So, for many people, the Lyme comes first (even if they don't know it right away).

I was dismissed as a patient, but I will still be traveling to see the Lyme doctor with my 17-year old son, who has not only Lyme disease but two of its co-infections, babesia and bartonella.  Jamie's case is much more complicated.  He has 3 tick-borne infections, and he probably has had them for about 5 years.  In his case, an early Lyme infection, 8 years ago, is probably what triggered his CFS to start, but that was caught early and treated effectively.  A couple of years later, his CFS had improved dramatically with Orthostatic Intolerance (OI) treatment (as it often does), and he was doing quite well when he got Lyme again about 5 years ago.  He was again treated; however, he was never tested at that time for any other tick-borne infections.

Experts say that it is impossible to get rid of Lyme completely when there are co-infections present, so we think that is what happened with him - he probably had these infections all along, but we didn't know it.  He improved somewhat with standard Lyme treatment (30 days of doxycycline) but did not return to his earlier level of functioning completely.  He gradually worsened over the next 5 years - very gradually so that it wasn't obvious to us at first.  We thought he was dealing only with CFS. 

It took some very unusual non-CFS symptoms to emerge a few years ago - especially pain in the soles of his feet and strange stretch-mark-like lines on his back - for us to finally realize he had bartonella.  I took him to see my Lyme specialist, and he also tested positive for Lyme and babesia.  Other new or worsening symptoms - like light sensitivity, night sweats, and worsening OI - that were due to tick infections, we had just chalked up to CFS.  I forgot the Golden Rule that my family doctor is always reminding me of - "Just because you have CFS doesn't mean you can't get something else.  Always check out any new or worsening symptoms."

So, now, Jamie is about 18 months into his treatment for the 3 tick-borne illnesses.  Having all three for over five years makes getting rid of all those infections very difficult.  He has been mostly bedridden this past year as a result of his treatment and is just now beginning to show some small signs of improvement.  Even after all this time, he can still only tolerate 1 doxycycline pill every 2 days (because his body is having trouble clearing the dead bugs (i.e. toxins)), so we know he still has a long, difficult road ahead of him.  But at least we are on the right track now, and my recovery gives us additional hope that some day, Jamie will be able to lead a more normal life.

I shared all these details of our struggles here because our experiences are not at all unusual.  In fact, I have heard similar stories from hundreds of CFS patients over the past 10 years - people with CFS who had no idea they also had Lyme disease.  Despite hearing the same story over and over, I still didn't recognize when it happened to my own son.

So, if your ME/CFS symptoms have worsened over the years instead of improving or if the standard treatments - for sleep dysfunction, for OI, for endocrine dysfunction - haven't resulted in improvement for you, then you should consider whether you might have underlying infections - either Lyme and other tick-borne infections and/or reactivated viruses.  In fact, everyone diagnosed with ME/CFS should be thoroughly tested for Lyme disease AND its co-infections because they are often impossible to differentiate from CFS by symptoms alone (of course, the tests aren't very accurate, so you need to look at both test results and symptoms).  Lyme has been found in all 50 states and on all continents except Antarctica, so this applies no matter where you live.

As for us, we are celebrating this week!

Wednesday, April 18, 2012

Sign Up for CFSAC Notification

No, I haven't fallen off the face of the earth!  Sorry for the long silence - we were away on spring break last week, and this week is just insanely busy.  I promise to catch up with you all soon.

In the meantime, I just want to pass along a message.  The CFS Advisory Committee (CFSAC) here in the U.S. has still not announced a meeting date for their next meeting, which usually takes place in May.  If you would like to be notified immediately when the meeting date is announced, you can e-mail Denise (at speakupaboutme at gmail dot com), who founded the Speak Up About ME advocacy group, and ask her to add you to her mailing list.

As soon as the CFSAC meeting is announced, anyone who wants a chance to give public testimony at the meeting (whether in person in Washington, DC, or by phone) will need to immediately send an e-mail to the committee, to request a speaking slot.  Denise can let you know as soon as the meeting date is announced, and I will post it here, too (though probably not as quickly!)

If you want to know more about giving public testimony, just visit the Speak Up About ME blog, where Denise has recently posted about it.  This semi-annual meeting is an excellent opportunity for our voices to be heard and for us patients to actually influence public health policy for CFS here in the U.S. (which usually influences public policy elsewhere also).

OK, back to my hundred or so new e-mails...back soon, I promise!

Tuesday, April 03, 2012

Speak Up About ME - Early Onset ME/CFS

I wanted to tell you about the latest awareness efforts from Speak Up About ME, a group started by the mother of two teen boys with severe ME/CFS to help bring more attention to the plight of kids, teens, and young adults with ME/CFS.  Increasing awareness of ME/CFS's effects on children will help all of us, by making the government, researchers, the medical community, and the general public more aware of the scope and severity of our illness.

First, Speak Up About ME has a new blog where you can go for the latest updates.  For now, this blog will take the place of the website that was previously set up because the person who was maintaining the website (an ME/CFS patient) is too sick to keep it up to date right now.

There are two projects currently being prepared in preparation for the May CFSAC meeting in Washington, DC (the date has not been announced yet).  I will just quote directly from Denise Lopez-Majano, founder of Speak Up About ME:

Early Onset ME/CFS List:
"I am again updating the early onset ME/CFS list.  If you came down with ME/CFS before age 23, contact me at


name (let me know if I should only use your first name or a nickname that
you provide),

age at onset,

age at diagnosis,

current age,

location (country is sufficient).

(Note - In providing this information, you grant permission for me to use
this list as I see fit. Example showing the CDC, NIH, DHHS, CFSAC,
media, etc. how many patients with early onset ME/CFS there are.)"
 Empty Chairs Project (for anyone unable to attend the CFSAC meeting, not just kids):

"We hope that you will join us in Washington for Speak Up About ME’s events which will coincide with the spring 2012 CFSAC meeting.  Realistically, we know that for (far too many) patients that  isn’t possible.
So, patients who cannot participate in person, here is  a way to be seen at the CFSAC.
Patients  – especially those with early onset ME/CFS (before age 23) -
Your photos are needed ASAP!!!
At the CFSAC this spring, we will revive The Empty Chairs Project. The project depicts anyone and everyone who would consider participating in the CFSAC
if they were able to do so.
For The Empty Chairs 2012 project, we need:
Photo(s) suitable for 8×10 inch print
Reason(s) you cannot be at the CFSAC *
Signed media release form **
Send photos, reasons and signed media release forms to SpeakUpAboutME at gmail dot com.
If you are providing public comment remotely (via DVD/phone) –send your photo. Someone will sit at the table and hold up your photo during your public comment. (Connecting a face with the public comment provides huge visual impact.)
Send photos of family members/friends, etc. who would like to participate in the CFSAC, but cannot be there and why. (for example – can’t afford to take additional time off from work, can’t afford the expenses and so on.)
Photos need to be jpeg format.
If your name cannot/should not be used, please make that clear to me and provide a nickname.
A signed release needs to be submitted anyway so we can prove we have permission to display your photo.
* Reason(s) will be written on the border around the photo. (Some reasons might be – too sick to make the trip, no one to accompany me, can’t afford the travel/hotel expenses, trying to finish school and have missed _____ days already, and so on.)
** A completed and signed release form must accompany each photo submitted (in part, so that the CFSAC will allow us to display the photo).        Request form (specify Word or OpenOffice pdf format) from SpeakUpAboutME at gmail dot com."
 So, those are two easy ways for you to help bring awareness to ME/CFS...from your couch or bed!

Monday, April 02, 2012

Movie Monday 4/2

What a week.  Jamie made it into school a few times, so that was good.  But Craig is still on crutches for his injured knee (we are still waiting for the results of his MRI) and has been missing quite a bit of school.  Getting around on crutches is just wiping him out.  It's kind of interesting because he's been doing so well on Florinef the past few years that he rarely crashes after exertion - even after sleepovers or 2 hours playing soccer.  But walking on crutches is completing doing him in.  He woke up this morning exhausted and fell back to sleep in the recliner again.  He's been there all day which is so unlike him.

Anyway, we didn't watch a lot of movies this week - mostly catching up on our favorite TV shows:  Bones (we are finally up to the current season!), In Plain Sight (Ken and I are up to season 2 and rushing to get through the entire season because it is overdue at the library!), and The Mentalist.  We watched just one movie:
  • Our kids had never seen Cast Away all the way through, so we borrowed the DVD from friends.  It is such an amazing movie!!  Tom Hanks is incredible - on the screen alone for over 2 hours, and it never gets boring.  The kids loved Wilson.
Have you seen any good movies lately?