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.

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 http://www.hhs.gov/about/hhhmap.html.

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.”         http://www.hhs.gov/advcomcfs/advcomcfs-cfsacmeeting.html"

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.

Thanks!

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!

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!

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!

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 speakupaboutme@gmail.com.

Provide:

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!

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?

Movie Monday 3/26

Whew...another rollercoaster week here!  First, the good news: Jamie has been steadily improving after months of being severely debilitated.  He went to 1-3 classes a day 3 days last week, had his two best friends over this weekend for the first time in months, and even made it to school for a full day today, including making up a test.  Of course, we are immensely happy about this.  It is so good to see him feeling more like himself again.  Friday after school, he even took the car out (again, first time in months), picked up a friend, and went out for a few hours.  He came home grinning from ear to ear. 

On the down side, now that we finally have Jamie up on his feet again, Craig injured his knee yesterday, and it looks pretty serious.  My husband spent 3 hours in the ER at the children's hospital with him last night, but they weren't able to tell us much - just that nothing seems to be broken.  Ortho couldn't fit him in until tomorrow, so he spent today resting it and icing it, but he still can't put any weight on it.  Craig's mild CFS is completely under control with Florinef (he's pretty much symptom-free), so he's not used to lying around.  In fact, he is insanely active, and just one day on the couch already has him stir crazy!  Worse of all, soccer season starts today, and he was really looking forward to "playing up" on the high school team with Jamie (not that Jamie will be able to play much, but he's been on this same team since he was 4).  So, we are waiting to find out how bad it is.

Anyway, I missed Movie Monday last week, so here are a few we have watched in the last two weeks:

• Jamie, Ken, and I watched The Ides of March last weekend.  It was quite good, as expected, with  George Clooney starring as a presidential candidate, with Philip Seymour Hoffman as his campaign manager, and Ryan Gosling playing the idealistic deputy campaign manager who discovers a flaw in his revered candidate. It's all about betrayal and paints a pretty dismal picture of politics!  So, a bit depressing but very well done.
• Last Monday, we all watched Hugo together.  Hugo is based on Brian Selnick's award-winning middle-grade novel The Invention of Hugo Cabret (I hadn't read the novel, though).  It is a wonderful, magical story about an orphan who lives in a Paris train station where he maintains all the clocks while trying to fix a mechanical man that his father was working on.  Great fun for everyone, not just kids!
• When Craig went to his school dance Friday night, Ken, Jamie and I watched In Time, a dystopian sci fi movie with lots of action.  It takes place in a future where time has become currency.  People stop aging at 25; from then on, they must earn more time in order to stay alive.  Wealthy people can lives for centuries and never age, but poor people live day to day and moment to moment, constantly watching the time tick down on the electronic read-out on their arms.  The movie stars Justin Timberlake as a 28-year old living in the slums, and Amanda Seyfried stars as the daughter of a wealthy man in "New Grenwich." We all enjoyed it very much - lots of action and suspense.

Have you seen any good movies lately?

Quote It Saturday 3/24

Ah, the weekend.  We were camping last weekend- which was wonderful - but it left us without our usual catch-up, clean-up time on the weekend.  So, the house is a mess and the kitchen counters are overflowing with mail, school papers, college letters, etc.  That's my main project for today!  But first, while I lie on the couch and let me beta blockers kick in so I can be more active, I thought I'd take advantage of a tiny bit of free time to post another quote from a book I read recently that really resonated with me.

The book was The Particular Sadness of Lemon Cake by Aimee Bender, a very unusual novel about a girl who can taste the emotions of the cook in the food that she eats (read my review here).  Although her unique talent might seem like fun, it is actually a disability, something that restricts her life and sets her apart from her peers, as in this scene where she finds the feelings in her meal so unbearable and overwhelming that she wants to pull out her tongue and never eat again.  Of course, it is a very different disability that the ones that we all live with, but her observations on feeling isolated struck a chord with me:

"It can feel so lonely to see strangers out in the day, shopping, on a day that is not a good one.  On this one: the day I returned from the emergency room... Not an easy day to look at people in their vivid clothes, in their shining hair, pointing and smiling at colorful woven sweaters.


I wanted to erase them all.  But I also wanted to be them all, and I could erase them and want to be them at the same time."
          - from The Particular Sadness of Lemon Cake by Aimee Bender

These feelings - being torn between loathing and longing at the sight of normal people - are very familiar to me.  Even now, after 10 years of being sick and feeling fairly well-adjusted to my new normal, I still feel pangs like this, as I described in a post last year called Exercise Envy.  In another post, Living in a World Apart, I described that feeling of being different, separate from the people around me, even when those people are friends; I found my own feelings oddly echoed in the isolation felt by the young narrator of this book.

I think it is interesting how such feelings are so universal, no matter what maladies a person suffers from.  It makes me feel less alone.

Example School Accommodations for Kids with ME/CFS

[Updated 9-17-25]

 

In the first part of this post on school accommodations for kids with ME/CFS, long-COVID, fibromyalgia, POTS, EDS, Lyme, and related illnesses, I explained some basics: getting a doctor's letter, keeping records, 504 Plans, IEPs, finding an Educational Advocate, and resources to help parents get the help their kids need in school.  

 

In this post, I list a whole bunch of example accommodations--real-life accommodations from real 504 Plans and IEPs that have worked for kids and teens with ME/CFS and related conditions.  When we first started out, we had no idea even what to ask for and certainly didn’t realize what kinds of help was available. I've included the accommodations our own kids had, as well as others I know of from other kids. I want parents to understand the full breadth of what's possible. 

 

First, consider:  

Recognize that everyone is different.  I am sharing our experiences here in the hopes that they will help you, but it is likely that your child has different needs. Deciding what to do about his or her education is a very personal, very individual decision that can only be made by you and your child. Some kids are better off leaving school entirely. In our case, home schooling was out of the question because I was also sick, and our sons both desperately wanted to be in school with their friends. So, our goal has always been to maximize their time in school while also helping them meet educational goals each year. Your goals might be different, based on your own child’s needs. There are also newer options that weren't available when our kids were in school, like online learning.

 

Advocate for your child. It is highly likely that you will have to fight for what your child needs and that school staff will say they can't provide what you're asking for at first. Read the earlier post on School Accommodations, know your legal rights, bring in an educational advocate (many work for free), and keep advocating for your child (all the information is in that earlier post). We worked with four different schools for our two sons (plus college!), and it was never easy. Don't give up. 

 

Recognize the importance of emotional development, as well as academics. We often had to keep repeating this to recalcitrant school staff: all children go to school not just for academic learning but also for emotional and social development. Spending time with peers is important, if at all possible, along with meeting academic goals.

 

Identify the problem and find someone to be on your side. Often, when the school is pushing back and refusing to provide adequate accommodations, it is because of one particular teacher or administrator. Try to find a way to work around that. When our son's teacher didn't understand in elementary school, we went to the principal (who was wonderful). When our younger son's elementary school nurse did not believe he had ME/CFS, we went directly to the principal and showed him the doctor's letter. When two teachers in middle school refused to work with his accommodations (yes, that's illegal), we chose those two classes to be the ones he took with a homebound instructor (we knew he could only manage 3 in-school classes), and we ended up working with a fabulous homebound instructor who is still a close family friend and cae to our son's college graduation party. And when the vice-principal in his high school said they did not have the funds for any homebound instruction, we went to the principal, who immediately said yes. Find an ally on the staff. Don't give up. The law is on your side.

 

Elementary School 

Our older son first got seriously ill in 5^th grade, when he was still in elementary school. He had a terrible teacher who interpreted his sudden onset of severe cognitive dysfunction as a behavior problem! She called us in for a conference a few weeks after school started and announced to us, “Your son is a defiant, cheating liar.” Our mouths just hung open. This was a kid who’d always gotten straight A’s and was probably the most obedient child in the school, a major rule-follower, always loved by peers and teachers. His brain fog was so bad that he couldn’t remember the teacher’s instructions for 5 minutes, and he couldn’t concentrate on even simple math problems. He was embarrassed by this sudden difficulty, so he was asking his classmates questions or glancing at their papers to see what was going on during classwork. His teacher interpreted this as lying, cheating, and disobeying! 

Fortunately, the school’s principal was wonderful, our savior that year. When we told her what was going on, she said, “Well, I know nothing about ME/CFS or 504 Plans, but we will figure this out together.” Then, she called in the district 504 coordinator, and we sat down and worked things out together (that was our first and last cooperative 504 meeting!). In fact, I ran into this principal just a few weeks ago, and she asked about our son … 7 years later! 

So, anyway, this is what we ended up with in our son’s 504 Plan in elementary school:

• Waive all district attendance requirements (in our school district, the policy requires that any student who misses more than 30 days of school a year must attend summer school; this was waived for him every year, from 5^th grade to 12^th. Our son ended up missing 60 days of school in 5^th grade and 90 days in 12th grade!).
• Assign a home tutor to help him catch up on missed work.
• Give extra time to complete tasks and extend deadlines.
• Shorten assignments and break them into shorter segments.
• Excused from nightly reading assignment, nightly journal writing assignment, and morning math assignment when absent (he was an avid reader anyway).
• Not grading handwriting (this 5^th grade teacher required everything to be written in cursive which our son hadn’t mastered yet and which required a lot of concentration for him to write).
• Ongoing re-teaching after absences (we had trouble getting the teacher to do this).
• Gym is optional depending on his health.
• Waiver from all state mandated testing.

Our younger son's accommodations (different school) were much the same, once we got that obstructive school nurse out of the way). 

Middle-School

Middle school, with multiple teachers, was a whole new ball game, with a whole new staff. At our first 504 meeting, they surprised us (the first of many nasty shocks) by telling us that if our son was sick, he should be on homebound instruction full-time. We argued, fought, and battled for hours until finally, the guidance counselor looked at us and said, “I get it.” She had realized what we'd been arguing that whole time: what was best for the student was for him to be in school as much as he was able. From then on, she was a fabulous ally. Two teachers outright refused to work with our son part-time, so she arranged for those two classes to be taught by a homebound tutor (another lesson: if you can’t beat them, work around them). So, his middle school 504 Plan ended up including the following accommodations:

• Waive all district attendance requirements.
• Waive all electives, leaving only the 5 required academic classes.
• Two classes will be taught by a homebound instructor (the two where the teachers refused to cooperate).
• For the other 3 classes, student will attend as much as he is able (turned out to be about 60% of the time) and teachers will provide assignments during absences. [NOTE that this was not a schedule he had to comply with--impossible with ME/CFS--but was based on his symptoms.]
• Allow extra time for tests if symptoms warrant.
• Exemption from state testing.
• Student may rest in the nurse’s office as needed (this was always in our son’s 504 Plans, but he rarely used it!)
• Modify homework assignments to reduce volume of work to only that necessary to show mastery of skills (this is sometimes a tough one for teachers to understand, but it is critical).
• Allow typewritten assignments; parents may act as scribes (this helped a lot – often our son could manage to verbally dictate to us when he couldn’t manage to write out answers himself).
• Allow student to carry Gatorade with him at all times (by then, we had learned about Orthostatic Intolerance!)
• Allow frequent bathroom breaks (an obvious result of the Gatorade, but somehow a trivial thing that teachers were prone to complain about, so we included it).
• Another boy from our local support group attended the same school, and his accommodation plan was very different. He couldn't get up in the mornings and needed that extra sleep, so he attended school only from noon until the end of the day. In addition, his plan (an IEP since it required funding) included a bus to pick him up at noon! His parents were hugely grateful to us for paving the way and fighting the battles at that school.

By 7^th grade, our son was taking Florinef for OI and had shown dramatic improvement. He no longer needed the homebound tutoring, went back to full-time school including electives and band, and was even able to take the state tests. So, those items were removed from the 504 Plan, but all the rest stayed because he still missed anywhere from 20-25 days of school a year.

 

High School 

For the first three years of high school, the 504 Plan was pretty much the same. Our son attended school full-time but missed 25-35 days a year, so the accommodations focused on reducing volume of work and helping him to catch up when he’d been absent a lot. By October of his senior year, we realized he was in much worse shape from his treatments for Lyme and other tick illnesses, so we added these accommodations:

• Homebound instruction, 2-3 hours a week, to help him keep up with his classes.
• “[He] was granted permission to reduce the number of required credits for senior status. During senior year, students are required to maintain a minimum of 5.5 credits. His current schedule consists of 4.5 credits, due to his physical health.” (this allowed him to drop one class, AP Economics).

Finally, in March of his senior year, we had one final 504 meeting because our son had already missed more than 50 days of school (he ended up missing 90 days that year) and was too sick to even manage a few hours with a tutor each week. This was the meeting where we finally brought an Advocate in, and it paid off. We should have done that years earlier! The school administrators shocked us (in a good way, for once!) by proposing:

• To excuse him from ALL 4^th marking period work, to allow him to use the last quarter to catch up.
• To allow him as much time as he needs to finish his work (through the summer, if necessary) while allowing him to graduate with his class in June. [Note, he finished his last math test the day before college started in August!].
  
• To excuse him from his AP exam for AP Statistics.

• Each of his teachers added their own specifics: most excused him from all homework, classwork, and quizzes, requiring only unit tests to be completed. His Physics teacher said he already had enough material to grade him for the year, that he’d already proven he could get an A in the class, so he didn't need to do any more or make anything else up. His Calculus teacher said he’d excuse all remaining work from the 2^nd marking period, so he can just focus on making up the more recent work.

Another teen girl in our local support group had these accommodations, in order to help her maintain social development, even though she was too sick to attend classes in school:

• All academic classes were taught by a homebound instructor (with many of the same accommodations as our son: to only show mastery, excused from certain assignments & tests, etc.)
• She could go into school for lunch period and for a twice-weekly art class she enjoyed. That helped her stay connected with her peers and not feel left behind. 

 

[NOTE: Our son graduated on time that June, won an award from the staff for overcoming adversity (!), and started college on time in the fall with his peers. See How Our Son Went from Couchbound to College for details.]

So, these are just some examples of the types of accommodations our kids have had, from second grade through high school.  There are many, many other options.  The book I recommended in the other post, A Parents’ Guide to CFIDS: How to Be an Advocate for Your Child With Chronic Fatigue Immune Dysfunction by Dr. David Bell and Mary Robinson, includes more examples of IEPs and 504 Plans. 

NOTE: If you are a parent with a child/teen/young adult with ME/CFS (or related illnesses), you might be interested in a Facebook group for parents of sick kids that I started.

 

Does your child have an accommodation plan?

 

What accommodations have helped? 

 

Share your experiences (or any questions) in the comments below.

 

You can also connect with me on Facebook and Twitter and Instagram. 

Note: This post contains affiliate links. Purchases from these links provide a small commission to me (pennies per purchase), to help offset the time I spend writing for this blog, at no extra cost to you.  

School Accommodations for Kids with ME/CFS and Related Illnesses

[UPDATED 9-17-25: Our sons are now 27 and 31! (how did that happen?) The younger one fully recovered after 10 years with milder ME/CFS. The older one still has ME/CFS, plus two tick infections. They both did well in school (thanks to accommodations) and earned Bachelor's degrees in college. Both now live independently, support themselves, and work full-time.] 

[UPDATE 9-21: Our sons are now in their early 20's. The younger one fully recovered from his ME/CFS at age 16, after ten years of mild illness. The older one still has ME/CFS and three tick infections. Both graduated from college. The younger one is working full-time and supporting himself. The older one was able to move in with his girlfriend and live on his own and has been working about 30 hours a week this summer successfully, which is a huge step forward! I have not yet written a full blog post about accommodations in college, but they are just as important as in the younger grades. This post does provide a brief outline of how to talk to school personnel (including at colleges/universities) about ME/CFS and some accommodations in college that can help. It is at least as important to provide as many effective treatments as possible for your child/teen/young adult so that they can manage school more easily! In this post, How My Son Went from Couchbound to College, I outline some of the treatments that helped him improve enough from a terrible senior year (with 95 days' absent!) to starting college on time with his peers in the fall. You can also refer to the Treatments tab in this blog for a full summary of the treatments that have helped all of us.]

I know I’ve been promising this post for a long time (and it will probably be at least two posts), but I’ve been trying to gather some information to pass along and also wanted to wait until we got through our latest (hopefully last!) 504 meeting for our 17-year old son. We finally accomplished that two weeks ago, and I sincerely hope that by sharing our experiences, we can possibly prevent some of you from going through the same sort of challenges and difficulties we have faced over the last 8 years.

First, a bit of background for those who may not be regular readers of this blog. We have two sons, now ages 17 and 14, who have had ME/CFS since they were 10 and 6, respectively. The older son has also recently been diagnosed with Lyme disease plus two other tick-borne infections, and treatment of those has made him much, much worse this past year. In all, we have dealt with four different schools over the past eight years, negotiating accommodations of all kinds for our sons; they have been, at times, full-time in school but absent a lot, part-time in school with very limited classwork, and for our older son this year, mostly homebound. They have always been in public schools, but we have developed accommodation plans with elementary schools, middle schools, and a charter high school. 

Let’s start with the basics:   

 

What are accommodation plans?  Here in the U.S., there are two types of plans that can be developed for kids with any kind of disability, including the disabilities caused by ME/CFS, fibromyalgia, POTS, Lyme disease, EDS, and other related conditions: 504 Plans and IEPs (Individualized Education Programs). Oddly enough, these two types of accommodation plans fall under completely different parts of the legal system.

A 504 Plan can be created under Section 504 of the Rehabilitation Act of 1973, which applies to all public schools (sorry, if your child goes to private school, the law doesn’t cover him or her). Section 504 is anti-discrimination legislation, administered by the Office of Civil Rights. Unfortunately, this legislation does not provide any funding to schools, so a 504 Plan is appropriate if your child does not need accommodations that will cost the school much money (i.e. going to school part-time, teachers reducing the volume of work, waiving attendance requirements, allowing typing or a scribe, etc.). ME/CFS qualifies under Section 504 as “a physical or mental impairment which substantially limits a major life activity.”

Some kids with ME/CFS and similar illnesses qualify under the Individuals with Disabilities Education Act (IDEA) for an Individualized Education Program (IEP). This is the appropriate way to go if your child is severely disabled, if his or her level of achievement has been affected by ME/CFS, and/or if the accommodations will cost the school money. As a part of IDEA, schools can receive funding from the government to help pay for the accommodations in an IEP. Within IDEA, ME/CFS qualifies as “other health impairment”: “… having limited strength, vitality or alertness to environmental stimuli, that results in limited alertness to the educational environment, that is due to chronic or acute health problems…and adversely affects a child’s academic performance.”

So, here are some steps to get you started:

 

Get a doctor’s note that specifically states the diagnosis(es), the symptoms, and the effects on the child’s ability to attend/handle school. You can’t get an accommodations plan (504 or IEP in the US) without a doctor’s note, and the more specific it is, the easier it will be to get appropriate accommodations. Our latest note from the Lyme doctor actually spells out the specific accommodations our son needs (homebound tutoring, taking tests at home, reduced work load, etc.).

Learn the law and understand your child’s rights.  This is a critical first step. For reasons we have never understood, schools always seem to want to get by with minimal accommodations, and there is always at least one person on staff who will fight you every step of the way. You need to understand your child’s rights so that you can be an effective advocate for him or her. You can read more about 504 Plans and IEPs at ParentAdvocates.org and the ADDitude website.  Here's a helpful chart about IEPs and 504 Plans. Another excellent resource is the Parents Information Center (PIC); there is usually one in every state or region (Search for “parent information center” and your state; here is the PIC in Delaware). If your child has ME/CFS, he or she does qualify for a 504 Plan or an IEP. The school is probably not aware of the full range of accommodations they can provide, just because they haven’t encountered them in the past. In this blog post, I include a list of example accommodations. It helps to know what is possible!

 

Keep meticulous records.  As Kim pointed out in the comments section here, it is critical that you take detailed notes and keep comprehensive records of ALL discussions with teachers and administrators--print e-mails, take notes at meetings, and after a meeting, send an e-mail back to all attendees to confirm and restate what was agreed. 

Get help from an Advocate.  Under these laws, it is your right as the parents of a disabled child to bring an Educational Advocate along with you to all school meetings. We highly recommend you do this, right from the start. Without an advocate, you are probably going to encounter major battles.  Every time this happened, it stunned me--why wouldn’t the school want to help a sick child?--but it happened every time. We are very fortunate to have two parents in our local ME/CFS group who act as Advocates professionally and who were able to recommend another Advocate to us when we needed one for this last meeting (the school was strongly against our using our friends as Advocates because their son attends the same school). So, how to find one if you aren’t so fortunate? Call your state Department of Education, your local PIC office, even local colleges and universities. You are looking for someone with extensive experience in education--and particularly special education, IEPs, and 504 Plans--who is willing to serve as your Advocate. Some will work for free or charge only a small fee. Here's an article on How an Advocate Could Help Your Child. When we finally brought an advocate with us, it was like someone had flipped a switch. He barely even said anything, but just having him in the meeting changed everything--the teachers and principal who'd been fighting us all year suddenly fell over themselves to help our son. Take some hard-won advice: Bring in an Advocate right from the start.

Understand what is going on behind the scenes.  This is something else that shocked us--over and over and over again.  Know this: that when you go into a school meeting, thinking you are there to discuss your child’s needs and figure out together how to help him/her, the school administrators and/or teachers have already met ahead of time on their own and determined what they think they can provide to your child … and it’s rarely what your child needs. I know this sounds cynical, but I am one of the least cynical people on the planet (some might even say naïve and too-trusting!). My husband and I have walked out of almost every school meeting (at four different schools!), in shock and feeling like we’ve been ambushed.

Educate school staff about ME/CFS.  It is likely that the school staff (504 coordinator, guidance counselor, IEP coordinator, principal, teachers) are unfamiliar with ME/CFS and almost certainly don’t understand how debilitating it is.  I have always brought a stack of copies of informative articles to every 504 meeting to hand out. Here are some that might help:

• ME/CFS in Children: Fact Sheet for Educational Professionals (CDC)
• School Nurses Can Improve the Life of Students with ME/CFS 
• School Fact Sheet (Mass. ME/CFS Association)
  
• The Impact of Severe ME/CFS on Student Learning and K-12 Educational Limitations

When things don’t work out, get extra help.  Don’t give up! It’s not only possible you won’t get what your child needs in the first meeting, it’s likely (again, I am an optimist, but this is based on hard experience). So, if you can’t make any progress in the first meeting, bring extra help to the next one. If the principal was not present, get him or her involved; this worked for us earlier this year when our son needed homebound instruction, and the vice principal just said, “Sorry, we’d like to help, but we can’t afford it.” The principal came in, listened to a recap, and said, “Of course, we have to help this student.  We’ll have to find a way to pay for it.” (If he had needed homebound from the start, he would have had an IEP instead of a 504 Plan and the government would have paid for the tutors). Back in middle school, when a math teacher was causing problems and the principal was no help, we contacted the District 504 Coordinator. She had a lot more experience with different kinds of accommodations, and she told the school they had to accommodate our son. You can also contact your state Department of Education. If all else fails, you may need to hire a lawyer or a mediator (check with your local PIC or your state DOE). But first ... find an Educational Advocate! (see above).

So, that’s a basic outline of how to get started.  To recap, some of the best resources include:

• Your local Parent Information Center (PIC) – search for “parent information center” and your state
• The Children's section of the CDC's website on ME/CFS
  
• The Parent Advocate website
• Your state Department of Education website

When we were just starting out with all of this eight years ago, the most valuable resource by far was a book, co-written by Dr. David Bell (pediatric CFS expert) and Mary Robinson, the mother of 2 kids with ME/CFS: A Parents’ Guide to CFIDS: How to Be an Advocate for Your Child With Chronic Fatigue Immune Dysfunction. (Note that CFIDS is an older name for ME/CFS.) This book covers school accommodations in detail and was very helpful to us.

Next up, a long list of example accommodations that might help your child.
Please share your comments here with other parents, based on your own experiences (and certainly let me know if I've gotten anything wrong here!) 

NOTE: If you are a parent with a child/teen/young adult with ME/CFS (or related illnesses like long-COVID, EDS, POTS, Lyme, fibro), you might be interested in a Facebook group for parents of sick kids that I started.

Does your child have an accommodation plan?

 

What accommodations have helped? 

 

Share your experiences (or any questions) in the comments below.

 

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