Time to Register for Public Comment for CFSAC!

Finally!  CFSAC has opened requests for public comment for the June 13-14 meeting.  You can provide public testimony in person, by phone, or by video, but if you want to snag a speaking slot, you need to make your request quickly - they usually fill up fast.  Just follow the instructions and links below.

(reprinted from CFSAC website)

Registration and Public Comment Sign up Instructions for 2012 CFSAC Spring Meeting

CFSAC Registration

Public attendance is welcome, but due to limited space advance registration is required. Individuals who plan to attend should register at the following link by Friday, June 8, 2012:  http://www.blsmeetings.net/CFSACJune2012.  Members of the media will also need to register.

All attendees will be required to show government-issued picture identification for entry into the federal building.  Attendees will receive a wrist band that must be worn the entire time. Security requires all non-federal employees to be escorted the entire time they are in the building. Upon leaving the building for any reason all persons will be required to follow the security steps mentioned above and receive a new wrist band. Members of the public will have the opportunity to provide public comments at the meeting or via telephone. International calls cannot be accommodated.

Public Comment Sign Up

A separate sign-up process for requesting time for public comment must be completed by Wednesday, June 6, 2012 at the following link: http://www.blsmeetings.net/CFSACPublicComment.

Individuals wishing to provide public comment must also submit an electronic copy of their testimony in advance to: CFSACJUNE2012@seamoncorporation.com by Wednesday, June 6, 2012.  We require that you email a document (5 pages or less) in MS WORD format that is single-spaced, 12-point font.

Note:  PDF files, hand-written notes and photographs will not be accepted.  Requests for public comment and written testimony will not be accepted through the CFSAC mailbox. Also, the CFSAC mailbox will not respond to questions about specific public comment requests.

All public comment becomes part of the public record, available for viewing and posted on the CFSAC website.  All testimony and printed material submitted for the meeting are part of the official meeting record and will be uploaded to the CFSAC website and made available for public inspection. Testimony and materials submitted should not include sensitive personal information, such as social security number, birthdates, driver’s license number, state identification or foreign country equivalent, passport number, financial account number, or credit or debit card number.  Sensitive health information, or non-public corporate or trade association information, such as trade secrets or other proprietary information should be excluded from any materials submitted. If you wish to remain anonymous the document must specify this.

We will confirm your time for public comment via email by Monday, June 11, 2012. Each speaker will be limited to five minutes per speaker; no exceptions will be made.  We will give priority to individuals who have not provided public comment within the previous year.

 Persons who wish to distribute printed materials to CFSAC members should submit one copy to Designated Federal Officer at cfsac@hhs.gov, prior to Wednesday, June 6, 2012.  Submissions are limited to 5 typewritten pages. http://www.hhs.gov/advcomcfs/2012spring_mtng_signup_instr.html

https://www.blsmeetings.net/4165/4165_public_comment.cfm

Moving Through Molasses

(Alternative post title:  ME/CFS Makes Me Dumb)

I feel as if I am trying to move through molasses this week, every action requiring an enormous effort of will, wanting only to lie on the couch and do nothing.  It is like trying to swim through Jell-o (notice how all my analogies are food-related?).

I am not badly crashed - no sore throat, only moderate "normal" aches - but I am severely lacking in mental energy, feeling as if my body is filled with wet cement and gravity is somehow affecting me more than other people.  I am not sleeping as soundly or as long as I normally do, and I feel exhausted all the time.  I spend all morning anxiously waiting for nap time in the afternoon, and getting up out of bed after my nap requires a huge effort.  I spend the rest of the afternoon and evening looking forward to lying on the couch watching TV (just a few more hours now...).

I can manage to lie in bed or on the couch with my laptop, but the only work I can handle is mindless stuff - checking e-mail, keeping up with Facebook groups, etc.  Anything requiring real mental effort or thought is just beyond me.  It took me 3 days and a huge amount of effort just to figure out what we are eating this week and make a grocery list.  I finally dragged myself to the grocery store today for an abbreviated trip, just to pick up the essentials, but every step of the process was so difficult - not physically but mentally.

I really hate this feeling.  I know it sounds ungrateful, but I think I would rather be completely crashed.  Then, I could just give in and rest and give up on trying to be productive.  Each day, I write "call Aetna and Medco" on my list of things that must be done, but I just don't have the drive or energy to spend hours on the phone with customer service trying to explain what the issues are.  In fact there are many urgent things like that that need to be done, but it.is.just.so.hard.

Maybe it is all the activity of last week and the weeks before catching up with me or maybe it is this sudden turn to more humid, overcast weather.  Who knows?  I don't even have the energy to play my usual guessing games.  I am just hoping it will pass soon.  Well, that took a gargantuan effort to write, and I can't think how to properly conclude this post, so...

P.S. I realized that I really should mention that this degree of brain fog is far less common for me these days than it used to be.  The main things that have helped improve my mental clarity are anti-virals, low-dose naltrexone, and Imunovir (hmm, all immune system treatments - interesting...).

Movie Monday 5/21

Well, I survived the weekend.  Thanks to all of you for your support last week when I posted in the midst of my mini breakdown!

I rested as much as I could Friday and dragged myself out to see Craig's play (he had the lead, Frederic, in The Pirates of Penzance) Friday night.  I was so glad I did!  He and the rest of the cast did an amazing job!  They were sooo good.  I took it easy Saturday morning, the rest of our guests arrived (my brother-in-law and niece and nephew).  After a super-easy dinner, we went to see the play again, and they were spectacular again!

I am pretty beat today but not entirely crashed.  A dentist appointment this morning kind of did me in, but I didn't have anything else pressing to do.  Actually, all four of us are exhausted tonight from the busy weekend, so we are vegging out with TV tonight.

There wasn't any time for movies this weekend, but Jamie and my mom and I chilled out with a DVD last week with our take-out pizza:

• Jamie suggested New Year's Eve, so I got it from Redbox (a free rental that we ended up paying $2 for because I forgot to return it for 2 more days!)  We all enjoyed it - a fun, ensemble movie filled with celebrities.  It was very similar to Valentine's Day, following a bunch of different characters through various, interrelated romantic comedy-type scenarios that all take place on New Year's Eve.  Just what we needed - something fun and light, even if a bit out of season.

Have you seen any good movies lately?

Of course, the best shows we saw were the two performances of The Pirates of Penzance at Craig's middle school.  Here is a little clip - Craig is the one in the red and white striped shirt:

Overtired, Overwhelmed, Over the Top

Sorry things have been so quiet here at my blog.  That is in direct contrast to the way things have been in my REAL life lately!  As many of you already know, I have been frantically busy with end-of-school stuff, soccer, school play, graduation preparation, and visitors, in addition to all the usual stuff in a family dealing with chronic illnesses.

I have been really pushing myself past my limits lately, pretty much every day.  I rarely get even an hour of quiet time to myself (Jamie is working with his tutor right now, and Craig is still at school), and I haven't been getting enough sleep, either.  You all know what happens when someone with CFS just keeps pushing, despite the warning signs to slow down.

I felt awful yesterday, but my husband was coming home from a business trip, my mom was already here, her husband due to arrive today, and my brother-in-law, niece, and nephew tomorrow.  So, I pushed myself (again) and went to the grocery store.  Yes, I know I shouldn't have, but I did.  And then I made dinner, too.  Of course, I felt even worse later.  I know I was cranky and out of sorts with my family - I was just so far past the point of exhaustion.

So, despite desperately needing sleep, I slept restlessly last night (one of the divine ironies of CFS).  I finally woke fully at about 5 am and couldn't get back to sleep because my mind was reeling, not only with things I needed to do but also with all sorts of obsessive rants - you know how that happens when you're spiraling downward?  I moved to the basement - wonderfully dark and quiet and freezing cold (I am always waking up during the night feeling overheated).  I got a few more hours sleep there and let me husband get my son out the door this morning.

Of course, I am pretty badly crashed today.  I finally got the message and have been trying to rest.  We still have waves of visitors coming in.  Craig has the lead in his middle school musical, The Pirates of Penzance, so the family are coming in to town for this weekend's performances.

I am planning to order Chinese take-out for dinner tonight, and we're having simple make-your-own soft tacos tomorrow night.  I am teachable; it just sometimes takes me a while :)

I have vowed not to overdo again, but I probably will with graduation in 2 weeks and vacation another week after that (which I have not even begun to plan yet!).  I just wanted to check in here briefly and say hello.  Hope everyone has a good weekend!

International ME/CFS Awareness Day 2012

Today is International CFS/ME Awareness Day. Whether you have ME/CFS or have a sick friend or family member, here are some simple things you can do to help educate the world and help promote research for CFS, even if you can't leave your house:

• Tell your friends and family about ME/CFS. I posted two links on Facebook today to help educate my friends and family: this article I wrote that explains the basics of ME/CFS and how to help someone and a link to our public testimony on pediatric CFS at last year's CFSAC meeting. During the first few years after I was diagnosed, I e-mailed my family and friends to tell them more about CFS and how they could help. Several of my friends thanked me and said they wanted to know more. Here are some sources of information you can provide to others:

1. About CFIDS by the CFIDS Association
2. An Overview of Chronic Fatigue Syndrome by Phoenix Rising
3. The CDC's information on CFS
4. My own article, CFS: An Invisible Illness, published last fall on Lively Woman

• You and your friends and family can also donate money to help fund badly-needed CFS research. I know the economy has been rough lately, but you could always do what we've done and just switch some of your charitable giving from other organizations to the CFIDS Association or other ME/CFS organization of your choice.
• You can also donate to CFS research without spending any extra money by using a shopping donation site or links like:
• iGive
• Good Shop
• CFIDS Association's Shop and Give links
• You can even earn money for CFS research when you use a search engine:
• Good Search
• iSearchiGive

Happy Awareness Day!  Help to spread the word!

Movie Monday 5/7

It's been many weeks (months?) since I've written a Movie Monday post simply because we've just been too busy for movies.  It's that time of year - the frantic rush toward the end of the school year.  But Jamie and I were both badly crashed on Saturday, so we took it easy.

Jamie did make it to his prom Friday night, and he said it was awesome!  He had a great time with his date and his friends, even danced a bit, and made it all the way to 12:30 am.  He didn't make it to the After Prom party (lots of schools do this now, to discourage the kind of wild carousing we did after our prom back in the day!), but both he and his date (a friend) had a good time. 

He called us at 12:30 am to come pick him up - he'd hung on long enough to drive her home but then felt too exhausted and nauseous to drive back to our house.  So, Ken and I leapt into action, jumped out of bed and drove across town to bring home both him and the car.  I was, of course, also exhausted and nauseous in the middle of the night!  But I didn't mind at all.  We were glad he did the smart thing and called us when he reached his limit.  I was thinking on the way home that I would go anywhere, anytime, to help keep him safe.  It's just part of being a parent.

He is still badly crashed, but we are glad he didn't miss out on this milestone experience, especially after missing so much else during his senior year of high school.  I am doing better, though a bit run down today after a busy day yesterday.

So, on Saturday evening, Jamie, Ken and I (Craig was out with friends, as usual!) relaxed with a movie we've all been wanting to see for a while:

• The Muppets!  We are big Muppet fans from way back.  Of course I watched Sesame Street as a little kid and The Muppet Show in the 80's, but my kids know the Muppets well, too, from their many movies which were favorites in our house.  The new movie was very good - just the kind of happy, uplifting, light-hearted fare we needed on a bad crash day!  A fun-filled movie, with all the bad jokes, celebrity cameos, and great songs that the Muppets are known for.

Here's one of my favorite scenes from the movie, when the chickens "cluck" Forget You - hilarious!



Have you seen any good movies lately?

Jamie's Slow, Gradual Improvement

I feel like I jinxed myself earlier this week by posting about how great I was feeling!  I am now badly crashed, in bed, with sore throat and aches.  I don't think it's anything I did, though.  The whole right side of my mouth and throat are sore, so it feels like an infection or immune reaction.  I'm taking lots of olive leaf and resting.

So, today, I thought I'd finally share some details about my son Jamie's very gradual improvement and what we think is helping him.  It's always a guessing game, of course, but a few things seemed to have made a definite difference.

As many of you already know, Jamie has been mostly bedridden for the past year or so, due to a severe herx reaction from his treatment for Lyme disease, bartonella, and babesia (two other tick-borne infections).  We tried everything to lessen the herx reaction, but nothing seemed to help.  Our Lyme doctor explained that Jamie's severe worsening over such a long period of time indicated that his body was having trouble getting rid of toxins properly (toxins in this case meaning the dead bacteria being killed off by the antibiotics he's taking for his tick infections).  He said it meant that Jamie's methylation process was blocked.  As I mentioned in a previous post, I recalled reading about this problem in CFS, so I did some research.

Three different doctors have studied the methylation process in people with CFS and have worked to come up with protocols for treating it.  This article by Rich Van Konynenburg explains why this process is blocked in people with CFS and how to treat it.  I read that article, as well as this Q&A by another doctor, Dr. Nathan.  I ordered some of the supplements recommended for Jamie, but we didn't see any effect at first.  Both doctors warned that treating the methylation block can itself cause a herx reaction, so our goal was to try to help improve this process for Jamie without making things worse, which is of course a real balancing act!

We started with sublingual B12 pills and the recommended folate supplement, Actifolate.  Jamie's CFS doctor was interested in this approach and suggested switching to B12 injections and to a prescription type of folate (L-methylfolate, brand name Deplin) which would both be better absorbed by the body.  Again, we saw no improvement.  Finally, I e-mailed one of the experts, Rich Van Konynenburg, to explain our approach and ask his advice.  It turns out that he is another CFS Saint, like Dr. Rowe, who took the time to not only read my lengthy story but to also reply in detail to every one of my questions.

He said the B12 injections were indeed the better choice, so we stuck with those (once a week), but that the prescription-strength folate was often far too much for CFS patients.  So, we switched back to Actifolate, I cut those in half, and only gave Jamie one half every other day.  We saw an almost immediate (though mild) improvement!  Lesson 1: you can have too much of a good thing!

About that same time, Jamie started taking Immunovir (I have described my own good experience with Immunovir here).  Jamie showed some improvement at the lowest dose (2 pills a day) but seemed to get worse when we started building the dose up, as recommended (I take 4 pills a day).  Once I noticed the pattern (it can take a while sometimes to tease out cause and effect!), I reduced his dose back to 2 Immunovir a day, and he has continued to do very well at that dose.  In fact, I believe that is what got him off the couch and back into school.  Lesson 1 again: you can have too much of a good thing!

Just last week I e-mailed Dr. Konynenburg again and told him what other supplements Jamie's been taking, including SAMe, which was recommended by our Lyme doctor to help with the herx reaction (SAMe is a supplement often used to treat depression but it is also effective for liver function which ties in directly with helping the body to get rid of toxins).  Interestingly, he told me that people with CFS often do not tolerate SAMe well; that it was originally a part of his own protocol but he removed it.  So, I took it out of Jamie's pill boxes immediately, and...this past week without SAMe has been one of Jamie's best weeks in over a year!  Lesson:  What's good for some people can be bad for others.

So, that is where he is now.  He is at least functioning now, after that horrible year of being completely incapacitated.  He goes to a class or two a day most days, has been able to work on his enormous pile of make-up work a bit at a time, and has even been able to take part in a few social activities.  In fact, he is resting right now in preparation for his senior prom tonight!  As you can imagine, we are all ecstatic that he is able to go!  He may not make it very late tonight, but he has a date, and a tux, and just drove himself to pick up the corsage.  Normal, healthy people just can't understand how big and amazing this is for him!  We are so very grateful.

When I e-mailed him, Dr. Van Konynenburg sent me a copy of his revised simplified methylation protocol which I have copied into another blog post (I didn't know how else to share it!).  This morning, as long as I was stuck in bed, I ordered the rest of the supplements listed there, and we will add them to Jamie's regimen, to see if they can help him to further improve and better tolerate his Lyme treatment.  Even though he is doing better, Jamie is a long way from well with very limited stamina and is still only able to tolerate 1 doxycycline pill every 2 days (Lyme treatment), so he still has a long ways to go.

But, he is making progress, one baby step at a time...

Dr. Konynenburg's Simplified Methylation Protocol

This is Rich Van Konynenburg's latest Simplified Methylation Protocol, last revised on March 30, 2011:

SIMPLIFIED TREATMENT APPROACH

FOR LIFTING THE PARTIAL METHYLATION CYCLE BLOCK

IN CHRONIC FATIGUE SYNDROME—March 30, 2011 Revision

Rich Van Konynenburg. Ph.D.

(Based on the full treatment program

developed by Amy Yasko, Ph.D., N.D.

which is used primarily in treating autism [1])

SUPPLEMENTS

1. General Vitamin Neurological Health Formula [2]: Start with ¼ tablet and increase dosage as tolerated to 2 tablets daily

2. Hydroxy B12 Mega Drops [3]: 2 drops under the tongue daily

3. MethylMate B [4]: 3 drops under the tongue daily

4. Folinic acid [5]: ¼ capsule daily

5. Phosphatidyl Serine Complex [6]: 1 softgel capsule daily (or lecithin, see below)

All these supplements can be obtained from http://www.holisticheal.com.

The fourth supplement comes in capsules that contain 800 mcg. It will be necessary to open the capsules, dump the powder onto a flat surface, and separate it into quarters using a knife to obtain the daily dose. The powder can be taken orally with water, with or without food.

These supplements can make some patients sleepy, so in those cases they take them at bedtime. In general, they can be taken at any time of day, with or without food.

Phosphatidyl serine can lower cortisol levels. Patients who already have low evening cortisol levels may wish to substitute lecithin [7] (at one softgel daily) for supplement number 5 above. Lecithin is also available from http://www.holisticheal.com.

For those allergic to soy, lecithin from other sources is available.

GO SLOWLY. As the methylation cycle block is lifted, toxins are mobilized and processed by the body, and this can lead to an exacerbation of symptoms. IF THIS HAPPENS, try smaller doses, every other day. SLOWLY work up to the full dosages.

Although this treatment approach consists only of nonprescription nutritional supplements, a few patients have reported adverse effects while on it. Therefore, it is necessary that patients be supervised by physicians while receiving this treatment.

[1] Yasko, Amy, Autism, Pathways to Recovery, Neurological Research Institute, 2009, available from http://www.holisticheal.com or Amazon.

[2] General Vitamin Neurological Health Formula is formulated and supplied by Holistic Health Consultants LLC.

[3] Hydroxy B12 Mega Drops is a liquid form of hydroxocobalamin (B12), supplied by Holistic Health Consultants. 2 drops is a dosage of 2,000 mcg.

[4] MethylMate B is a liquid form of (6s)-methyltetrahydrofolate supplied by Holistic Health Consultants, based on Extrafolate S, a trademark of Gnosis S.P.A. 3 drops is a dosage of 210 mcg.

[5] Folinic acid is 5-formyltetrahydrofolate. ¼ capsule is a dosage of 200 mcg.

[5] Phosphatidyl Serine Complex is a product of Vitamin Discount Center. 1 softgel is a dosage of 500 mg.

[7] Lecithin is a combination of phospholipids without phosphatidylserine. One softgel is a dosage of 1,200 mg.

A Surge of Energy!

Wow, I am getting so much done this week!  It is the exact opposite of last week, when exposure to Craig's cold left me feeling run-down and I got nothing done. Yin and yang.

To what do I attribute this sudden surge of energy?  Well, I think it is due to my Immunovir.  I've been on Immunovir now for over a year, and I know it helps my immune system and my overall well-being (since CFS is essentially an immune disorder).  It is recommended that you switch the dose around frequently; for some reason, it works better that way.  I was following Dr. Levine's and Dr. Klimas' recommendation - I take it 5 days a week and skip it completely on weekends.  With trial and error, I found that I do best on 4 pills a day (6 per day is considered optimum).

Then I read Dr. Cheney's dosage recommendations which involve a complicated schedule, taking some weeks off completely.  I didn't want to do that because taking it does help me function, so instead last week, I went down to just 2 pills a day.  Like I said, I was run-down all week, but I am fairly certain that was due to exposure to my son's virus; his brother and I both spent the week moderately crashed.

I went back to my full dosage of 4 pills a day this Monday, and that's when this surge of energy began!  I first connected it to the Immunovir when I had trouble getting to sleep Monday night - I was so wired!  Not typical CFS "wired and tired" but just wired!  It didn't help that I was reading a fabulous suspense novel, but I knew it was more than that.  I was awake past midnight (I am usually asleep about 10 pm) and then woke up at 7 am feeling fine!  That buzzed feeling had faded by the next night, and I was back to sleeping my usual restful 9 hours, but I remembered the same thing happened to me when I tried to go up to 6 Immunovir pills a day - that's why I backed down on the dose and quit taking it in the evening!

So, I am enjoying this surge of productivity.  With a charity pick-up scheduled for Tuesday morning, I ran around the house Monday evening (when I am usually lying on the couch), collecting old games, puzzles, and science kits the kids had outgrown and throwing shirts out of my closet that I haven't worn in years - woohoo!  Our house has gotten severely cluttered over the past 5 years or so, and it drives me crazy, so it felt really good to take some small steps in the right direction.  I have pledged to myself that each time the charity calls for a pick-up (usually once a month or so), I will say yes and at least pull together a single box or bag to donate.

Coincidentally, I just read a great article about clutter-busting for the chronically ill.  There is some excellent advice here, not only on clutter but also on proactive rest, something I was fortunate to learn about very early in my illness.  Same with the necessity of a cleaning service, just as the author explains.  So, maybe this article will inspire you, too!

Meanwhile, I am having a blast crossing items off my to-do list!  This is my idea of a good time!  And I am rewarding myself with dinner out with friends and our book group tonight.