January 2022 Newsletter

Greetings! 

Welcome to our #MEAction Colorado newsletter. We hope you find some valuable information in these newsletters. If you want to contribute to our next newsletter or have comments and suggestions, please let us know. 

Sincerely,

Jim Lutey, Editor jimlutey@gmail.com
John Kelty, Contributor john.kelty@meaction.net
Tom Strobel, Contributor strobeltom09@gmail.com

Xyway
By Sue Cunningham

When I got into see Dr. Nancy Klimas (an expert in ME/CFS), in May of 2008, one of the tests she asked me to do was a sleep study. She referred me to neurologist who specialized in sleep at the U of Miami and I soon did a sleep study at their sleep lab. (If you’ve never done a sleep study at a lab…you are in for a treat, not!) At that time home sleep tests were not available like they are now.
 
A well person may have 8 or more arousals (awakenings) during the night, however my sleep study revealed that I had over 40 arousals that night. As you can imagine, this is not normal sleep. (According to Dr. Klimas, ineffective sleep is a symptom/result of ME/CFS). I was diagnosed with non-restorative sleep and then was prescribed a small dose of doxepin to help me sleep. 

Not long after, Dr. Klimas suggested I ask my sleep doctor to prescribe Xyrem, (pronounced Zeye-rem), a medication approved for treating narcolepsy. He was willing to prescribe it to me in an off-label use. The prescribed dosage is 9g per night, but I started off the first night with just one dose of 2.5g. The morning after I felt better. I mean noticeably, delightfully better.  I feel that Xyrem has been the most effective medication I have ever taken for ME/CFS. I worked my way up to a full nightly dose which I divide it into 3 doses of 3g and have been taking Xyrem nightly until about a year ago.

In July of 2020, Jazz Pharmaceuticals which makes Xyrem, got Xywav (pronounced Zeye-wave) approved by the FDA for Narcolepsy as well. The difference in the 2 medications is that Xywav doesn’t have the large amount of sodium that Xyrem contains. It is my understanding that sodium was added to Xyrem so that it could be noticeable in a drink. Xyrem is Sodium Oxybate and can be used as a date rape drug. There is so much sodium in Xyrem that extended use can raise your blood pressure. As my blood pressure had risen a bit in the past few years, when Xywav was approved, my sleep doctor suggested I switch to it to avoid the sodium, which I did. It works exactly Xyrem and I still feel just as rested after waking.

Just this past Aug., Xywav was approved for idiopathic hypersomnia. This may be a boon for folks in Colorado with ME. The approval for it to treat idiopathic hypersomnia may make doctors here in Colorado feel more comfortable prescribing it for folks with ME.

My neurologist, who did his residency under Dr. Klimas, suspected that sleep doctors in Colorado might not be willing to prescribe Xyrem or Xywav for a PWME and when I did a sleep study here a couple years ago, I asked the neurologist if he would be willing to take over my prescription for Xyrem and at that time he was not.
 
What I’m saying here is, that if you have ME/CFS, your sleep is probably not normal. Getting a sleep study done would be the first step to determine if that is one of your symptoms. With this new approval of Xywav for idiopathic hypersomnia, it’s possible you might be able to get a doctor to prescribe Xywav for you. Xyrem and Xywav are both regulated under the REMS program (Risk Evaluation and Mitigation Strategy) as both can be used as a date rape drug. The REMS program has extra requirements for prescribers and it comes directly to your door from a specialized pharmacy, and is not available from a standard pharmacy.

Like I said before, I have found Xyrem and Xywav to be one of the most beneficial medications I’ve taken for ME/CFS. Perhaps you will too.


Colorado's Emergency Fund for people with ME is back for a second year.
by John Kelty, Chair, MEAction Colorado

MEAction's pilot program of an emergency fund for people with ME in financial need is back for a second year. If you live in Colorado, are financially unable to meet a critical need, and have ME, you can apply to the fund HERE. The fund can provide up to $250 and the process is really easy; you don't even need a formal diagnosis of ME or CFS as we all know how hard that can be to obtain. You can be eligible regardless of whether you applied last year.

Support Resources for People with ME in Colorado
by John Kelty, Chair, MEAction Colorado

Holidays can be extra stressful and energy-depleting so we'd like to highlight some of the support systems available for you including one new offering.

  • Our monthly meetings always start with an open forum for discussing anyone's questions, support needs and anything that people want to talk about. These are usually the 4th Friday at 10:00 AM and more information is in our monthly calendars.
  • You can set up a 1-1 confidential discussion with one of our volunteers. Just email me at john.kelty@meaction.net or send me a FB message to get it set up.  The Florida chapter is doing something similar and we thought we'd try it here too. Our volunteers are not trained therapists, counselors or medical experts, but they are eager to be available and help as they can. If you or someone you know is dealing with suicidal thoughts, please call the National Suicide Prevention Lifeline at 888-628-9454.
  • #MEaction has great national and global resources for support and listings of crisis hotlines at https://www.meaction.net/resources/support/.
  • Medical professionals who are supportive and familiar with ME are listed at https://bit.ly/COMEDoctors.  
  • A guide to navigating disability systems is at https://conta.cc/3aMrG65.

Upcoming Calendar of Events in Colorado
Singer, song-writer and person with ME, Hal Walker
photo courtesy Hal Walker

January 7, 5:00: "A Love Song For Hal," Fundraiser online concert featuring Chris Martin of Coldplay and many other artists. Funds to support Open Medicine Foundation & Hal Walker's medical bills. For more information, click HERE.


January 15, 1:30: ME Caregiver Support Call

January 21, 11:00: Solve ME/CFS Presents Using Data Analysis to Study ME/CFS And Long COVID: Session 1


If you have any questions or have any upcoming events for next month's calendar, please contact John Kelty at john.kelty@meaction.net.  

Colorado advocates for people with Myalgic Encephalomyelitis, their caregivers and allies. Join our FB group MEACTIONCO. Follow us on
Twitter and Instagram @MeactionCO
Disclaimer: 
 
Newsletter volunteers are NOT medical professionals; we are patients, allies and caregivers sharing our own experiences. What you do with the information offered is at your own risk and is your responsibility. Always try to work with a good doctor and/or medical professional and please consult him/her for your personal medical decisions. Please note that none of the information on this site has been evaluated by the FDA. It is shared for support and educational purposes only and is not intended to diagnose, treat, cure or prevent any disease or illness. Please do not make major changes in diet or exercise without discussing them with your physician and/or medical professional. Never begin taking any supplement without discussing it with your physician and/or medical professional, and never stop taking any prescription medications unless directed to do so by your physician and/or medical professional. The opinions expressed in this newsletter are those of the submitter and not of the newsletter volunteers or MEAction.