arrow44 Comments
  1. Madeleine
    Sep 20 - 1:31 pm

    So this author has “bad sleep” because he only sleeps 7 hours straight every single night? And he couldn’t just look at the clock and figure this out?

    I’m trying not to feel insulted by reading this article on your blog. Maybe next time you offer advice about sleep, the author could actually have insomnia, and could do some research beyond his friend Florian.

    • Johannes Starke
      Sep 20 - 3:03 pm

      Hi Madelaine,

      I hear your concern that these techniques might not work for you because my sleep was already pretty good when I conducted the smartphone-based sleep study.

      Let me explain: The reason I slept so good is that I had already been using many of the techniques described in the article (and others, including pacing, mindfulness, meditation, and amygdala retraining) prior to conducting my little smartphone-based sleep study. The sleep study just helped me to bring my sleep to the next level.

      In my case, the techniques helped me from taking 1-2 hours to fall asleep to fall asleep right away. Also, they helped me to wake up less often during the night and be more rested in the morning.

      And, I did do research beyond my friend Florian. One of my clients just had two really good weeks (still doing good, touch wood) at 90% recovery from being sick with ME/CFS for over 12 years. One of the key elements she attributed this improvement to is her improved sleep she got from listening to a meditation on her kindle fire each night in bed to fall asleep.

      I am sorry that you feel like the techniques in this article might not help you to cure a complete insomnia. I agree that it might need more than what I covered here–even though you might still want to try this to see how much it helps.

      If you want, you can book a free consultation with me (http://cfsrecoveryproject.com/free-consultation/) and I am happy to share other ideas, specific to your personal situation, for overcoming your insomnia. I have helped others overcome really bad sleep problems (4-5 hours of sleep per night with lots of waking in between), and I might be able to help you, too.

      In any case, whether we speak or not, I wish you well on your healing journey!

      Johannes

  2. Sue
    Sep 20 - 2:36 pm

    Hi,

    No need to stuff your phone under your pillow. You can get something called SleepPhones, which is a soft headband with very flat speakers positioned over your ears and cords coming out the back to connect to the headphone port on your phone. Works great and very comfortable!

    Could you please clarify in your article whether you are talking about all smart phones: iPhones plus android phones, or just android phones? From the links going to the Google play App Store, I suspect (realize) the latter, but it could be certainly confusing for iphone people who don’t realize why they can’t install an application you are recommending.

    • Johannes Starke
      Sep 20 - 3:43 pm

      Thanks for sharing the SleepPhones resource, Sue!

      The apps I name only work on android smartphones. For most of these apps, iPhone equivalents exist. Just google, “[name of application] for iPhone”.

      For example,
      If you google SleepasAndroid for IPhone, you will quickly find a good iPhone alternative in the search results.

      If you find a good one, please post about it in the comments!

      The only app that might be difficult to find on an iPhone is a Perfect App Lock equivalent (the reasons for it are complicated). Therefore, I would definitely recommend buying an Android phone to someone with FM or ME / CFS who is just about to buy a smartphone.

      Hope this helps :)

  3. FloridaCitizen
    Sep 20 - 2:42 pm

    You have *GOT* to be kidding! A smartphone???? *ALL* cell phones emit RF radiation (RFR), one of the worst things to which someone with CFS/CFIDS/ME can be exposed. *NO ONE* should be exposed to RFR, particularly when trying to sleep. It causes oxidative stress and injury to the brain and all body organs. During sleep is when the body repairs itself, including the brain. RFR exposure during this time prevents repair and sleep. I suggest the author reads the BioInitiative Report (http://www.bioinitiativereport.org) before making such dangerous and absurd recommendations. Anyone who has CFS/CFIDS/ME, MCS, FM, PTSD, GWS should remove *ALL* sources of RFR from the home: all wireless devices, cordless phones, Wi-Fi, Smart Meters, cell phones, tablet computers, etc. In fact, I strongly recommend reading Dr. Martin Pall’s latest paper “Electromagnetic fields act via activation of voltage-gated calcium channels to produce beneficial or adverse effects” found at:
    http://onlinelibrary.wiley.com/doi/10.1111/jcmm.12088/pdf

    More can also be learned about the dangers of RFR at http://www.stopsmartmeters.org

    RFR greatly upregulates the NO/ONOO- cycle. Even healthy people are getting extremely ill from the RFR-saturated environment being created by all the newly installed Smart Meters world-wide. Check out all the research going back 70 years on the harm caused by RFR. Beware though, because the industry hacks and the government will brainwash you into believing it’s all safe.

    • Johannes Starke
      Sep 20 - 3:28 pm

      I can alleviate your concern:

      Your phone will be in airplane mode if you follow the techniques in this article, which means that none of the radiation you describe will be emitted.

      I believe that even if the radiation you describe was emitted, which it isn’t when your phone is in airplane mode, it would only make very few people with ME / CFS or Fibromyalgia sicker. If someone got sick from cellphones or WiFi, they would already know before reading this article, simply by how they feel when they are near a radiation source.

      None of my clients have reported any adverse effects, and last time I read the literature, it also seemed like, while RFs can be harmful in theory, the doses and exposure emitted by cellphones and WiFi’s has proven not to be harmful.

      In essence, I believe “cellphones and WiFi is bad for you”, with the exception mentioned above, is one of those theories that can only live because we have not yet found the real cause of ME / CFS and Fibromyalgia.

  4. Madeleine
    Sep 20 - 4:33 pm

    Johannes,

    It’s great that these techniques have helped you and some of your CFS clients. But charting the pattern of one’s insomnia and gaining control over racing thoughts…….these are basic interventions, like sleeping in a dark and quiet space. I was just surprised to find
    ‘mild insomnia 101′ on this blog.

    • Cort Johnson
      Sep 20 - 4:45 pm

      Well, I can use it :). Alot of these interventions (not the smartphone ones) I’ve heard of but haven’t really practiced perhaps because I can get by without practicing them. When I do practice them I’ve found that practicing them can help. I guess what I’m saying is that I need constant reminders to do this kind of stuff.

  5. Sarah Robinson
    Sep 20 - 4:39 pm

    I’m surely appreciate reading this article! Thank you for your knowledge and for sharing it with us. Since becoming ill with ME/CFS/FMS, I have felt unable to truly relax. It’s like some neurological hum keeps me on edge. And, of course, the day after little or no sleep is a day lost to misery.

    I’ve suspected that the blinking lights from television and surfing the web that I use to distract myself when I’m trying to go to sleep (usually a 2-hour affair) may be overtaxing my already buzzing neurons, but I haven’t known what to do about it. Your practical solutions give me hope that perhaps I can learn to deeply rest again.

    I’m also interested to learn that I can get a smart phone for a one-time fee and that it can perform the functions you describe in the article just using our home wifi and without being activated with a monthly charge. (Did I get that right???)

    Thank you, Johannes, for all of your expertise. And thank you, Sue, for letting us know about SleepPhones. I can’t wait to try this out!

    • Johannes Starke
      Sep 20 - 7:19 pm

      From how you describe you situation, Sarah, using the techniques from this article are ideal for you. I’d love to hear how it’s going for you once you’ve tried them. Also, feel free to post your questions here if you need any guidance along the way.

      Yes, you got it right, you can use the phone over WiFi only without a monthly charge if you follow the instructions in the smartphone buying guide I linked to. You simply don’t insert the simcard into the phone when you receive it.

      • Sarah Robinson
        Sep 21 - 3:17 pm

        Way cool, thanks! Yep, I’ll let you know.

  6. Christian Godbout
    Sep 20 - 4:57 pm

    Hi Johannes

    First I would like to thank you for something off-topic: your video on how to overcome the bitterness of “missing out” on life, by identifying to people whom we love and who can have a life. I recommend it to all.

    That was genuine help to me. It truly was, I mean it. I even showed it to my girlfriend whom I often bitterly envy when she goes out with her friends… so you can surmise she liked what you said as well (albeit for very different reasons than mine!)

    But I have to ask, I really do and I want to be constructive: what is this thing about smart phones and ME/CFS? This is the second time around! I don’t get it. Sure, they can be convenient for this or that; but do they have beneficial effects on us to a point that they should deserve such attention here?

    I am having a hard time connecting the person who spoke such words of love-based wisdom on that video, and the one who wrote today on …smart phones. Forgive me!
    Or help me understand…

    • Cort Johnson
      Sep 20 - 5:08 pm

      Hey Christian, I think you have to try it and see. It may help or not…

      These practices have helped Johannes and others. For myself I see them as taking small bites out of this illness that could turn into something bigger over time for some. For others they may have no effect but that’s the way of virtually every treatment I can think of in this disorder. I also think of them as quality of life improvers.

      I think of ME/CFS as a disease that is best to attack from all directions…and see what works. Hopefully something will :)

    • Joyce
      Sep 20 - 5:12 pm

      Johannes: where would I find that video? I think it would also help me.

      I have listened to “Melt away tension” many times. I am always amazed at how much it relieves the pain. Thank you for that!!

      • Johannes Starke
        Sep 20 - 5:35 pm
      • Joyce
        Sep 20 - 5:41 pm

        PS – I am surprised that I have not seen any conversation here about sleep apnea and having a sleep study done.

        I know that we are all different, but when I read about Johannes having difficulty in his 7th hour of sleep, it made me question what might be going on in his sleep cycle at that time.

        I had sleep studies done about two years ago, and found that I have both obstructive and central apnea. I have been on a version of CPAP since then. I cannot tell you what a difference it has made for me!

        Pre-cpap I would often get up to go to the bathroom 4-6 times a night. I thought what in the world is my hubby complaining about, getting up 2 or 3 times. Turns out this is one of the indicators of sleep apnea.

        I now sleep 9 + hours a night which I consider to be very healing, and I no longer fall asleep watching a movie.

        Turns out hubby has sleep apnea too. He had been having chest pains and cpap has all but eliminated them.

        Having a sleep study done is a pretty easy thing to do.

        • Cort Johnson
          Sep 20 - 6:01 pm

          Glad to hear that and thanks for mentioning it.

          You can find a similar story of a person with ME/CFS who’s sleep apnea diagnosis proved to be very helpful here – http://www.cortjohnson.org/blog/2013/07/31/when-its-not-all-me-cfs-fm-how-a-sleep-study-turned-one-chronic-fatigue-syndrome-patients-life-around/

          It sounds like sleep studies might be a good idea for everyone who can get one.

          • Joan McVichie
            Sep 21 - 9:41 pm

            My sleep study showed how the alpha waves (awake) will interfere with the delta waves (deep sleep) & rouses you out of the deep sleep. The Dr. said this occurs in all people with ME/CFS/FM & people in constant pain, & that is why we don’t get a deep sleep which repairs the body. A second study with a CPAP machine showed these rousals were less & it has really improved my energy.

    • Johannes Starke
      Sep 20 - 5:48 pm

      Thank you for your kind and thoughtful comment, Christian.

      Regarding the question about whether smartphones really deserve so much attention, here are my thoughts:

      For me, smartphones have made an incredible difference. I seriously believe that I wouldn’t function nearly as good without them as I do now.

      That said, I am a bit geeky, and for someone without that inclination the technology might be too much of a turnoff to really reap it’s benefits. I’m a bit biased there, and therefore it’s very good for me to hear your perspective.

      Before I used it to overcome, ME/CFS, I despised smartphones. How my friends used it, it didn’t really make their life better. But since I saw how they can help my brainfog, sleep, functionality, and well-being, I believe they deserve to have a few articles written about them.

      That said, don’t worry, I’ve not turned into a man-machine :) I still think smartphones are just a small piece of a sophisticated mind/body approach to ME/CFS and Fibromyalgia. Mindfulness, reducing stress, pacing, meditating, etc. are still undiminished in their importance.

      If there is interest, I will write one more blog on how smartphones have helped me to function better every day, and then I will shut up about them for a while. Promised :)

      Again, thank you for sharing your thoughts!

  7. Marco
    Sep 21 - 1:36 am

    Hi Johannes

    I’m a little with Christian on this. I’m not a complete technophobe but I’m concerned that devices such as smartphones are potentially the worst thing for our already overloaded ME/CFS brains

    In fact I wouldn’t be surprised if the constant needing to access social media, apps etc doesn’t contribute to ADHD tendencies even in the ‘normal’ population. Better for us plagued with ‘overload’ to do one simple thing at a time, slowly and fully, in the real world.

    I’m a also a few generations behind on these things and just sorting out the choosing, buying and setting up of the thing would probably knock me off my feet for a week : )

    I’m sure though that you address these issues elsewhere.

    Just thought I’d mention a ‘no-tech’ technique I tend to use for sleep problems. For many of us (for me anyway) the main barrier to sleep is the constant barrage of intrusive thoughts of re-running events of the day, things to do next day, ongoing health or financial worries etc. Naturally getting over to sleep and having a restful night’s sleep is impossible if your brain continues on high alert.

    I use an imaginary box, with a lid, that I ‘keep’ under the bed (an old style sleigh bed with room underneath – you might have to imagine another place for yours). Rather than constantly mulling these intrusive thoughts over and over again I carefully place each one into my box and close the lid (literally putting a lid on them). I know then that I can go to sleep and any concerns haven’t been forgotten about and will still be there in the morning when I’m better able to deal with them (and usually come morning time they don’t seem quite so pressing or overwhelming).

    This technique doesn’t work 100% of the time and doesn’t completely eliminate the wired feelings that prevent sleep but I find that it does more often than not take the edge off the problem.

    Worth trying and no batteries required?

    • Johannes Starke
      Sep 21 - 11:37 am

      Hi Johannes

      Thank you for sharing your thoughts, Marco.

      Here are my thoughts with regards to your concerns. I hope they will be helpful.

      In fact I wouldn’t be surprised if the constant needing to access social media, apps etc doesn’t contribute to ADHD tendencies even in the ‘normal’ population. Better for us plagued with ‘overload’ to do one simple thing at a time, slowly and fully, in the real world.

      Yes, there is a risk here. I’m trying to addressing the overload effect with Perfect Applock app I mention in this article. For example, I have social media apps blocked because they overload my brain. Also, I have set my email so that I can send emails, but not receive any. The web-browser is blocked as well. I wish I could handle my phone without these “limitations,” but I just can’t.

      I’m a also a few generations behind on these things and just sorting out the choosing, buying and setting up of the thing would probably knock me off my feet for a week : )

      My smartphone did take me out for a week when I first got it. In the long run I’ve found it to be invaluable, however. Thanks for pointing out this risk.

      Love your low-tech technique for better sleep!

      • Marco
        Sep 21 - 11:55 am

        No criticism Johannes – whatever works for you and horses for courses and all that.

        Just a little suggestion for us Luddites!

        • Cort Johnson
          Sep 21 - 1:35 pm

          It’s harder to teach old dogs new tricks. (I know :)).

  8. Kate
    Sep 21 - 3:41 am

    For iPhone Sleep Cycle is a great app.

    It charts quality of sleep, how often you wake up, and how much time you spent in bed, and how you feel on waking up (happy, neutral, bad). You can also add your own parameters to track, for example if you drank tea, ate late, rested enough during the day, “exercised”, meditated. Which eventually could maybe show a pattern where if you do X you will not sleep well, and if you do Y sleep improves.

    I really love how the alarm clock of the app works too.
    You set a half hour (or different amount) window in between which it should wake you up, and it decides the best moment to do so. As in: not in the middle of a deep sleep moment, but when you’re naturally more close to waking up.
    Also – no loud adrenalin inducing beep, but soft music that gradually gets louder until you shut it off or hit snooze (it will auto-snooze if still within the wake up window).

  9. Kate
    Sep 21 - 3:49 am

    For iPhone Sleep Cycle is a great app.

    It charts quality of sleep, how often you wake up, how much time you spent in bed, and how you feel waking up. You can also add your own parameters to track, for example if you drank tea, ate late, rested enough during the day, “exercised”, meditated. Which eventually could maybe show a pattern where if you do X you will not sleep well, and if you do Y sleep improves.

    I also really love how the alarm clock of the app works too.
    You set a half hour (or different amount) window in between which it should wake you up, and it decides the best moment to do so. As in: not in the middle of a deep sleep moment, but when you’re naturally more close to waking up. Also – no loud adrenalin inducing beep, but soft music that gradually gets louder until you shut it off, or hit snooze. It will auto-snooze if it’s still within the wakup window.

  10. Madeleine
    Sep 21 - 9:23 am

    Ugh! Complaining again!

    I just got an email from you, Johannes, linking to this article and to your CFS Recovery Project. At the bottom I see that I have to unsubscribe if I want to stop email from you.

    I would like to know how you got my email address.

    • Johannes Starke
      Sep 21 - 11:12 am

      Dear Madelaine,

      You entered your email address on my website to subscribe to my newsletter on the smart-phone give-away page:
      cfsrecoveryproject.com/smartphone-give-away/

      It states clearly that by entering your email, you’re subscribing to the CFS Recovery Project newsletter:
      “To enter [the give-away], simply sign up to the ME/CFS Recovery Project Newsletter by entering your email address below or click “like” on the CFS Recovery Project Facebook page.”

      I would never subscribe anyone to my newsletter without their permission.

      Hope this helps,
      Johannes

  11. Nina
    Sep 21 - 9:41 am

    This is all a bit ‘infomercial-y’ to me. ‘Overcome’ CFIDS? Seriously? ( rhetorical question, no reply desired )

  12. Susana
    Sep 21 - 10:13 am

    About electromacnetics, radiation, etc. I can tell you that i spent the night un a mexican jungle hotel, where at nine or ten p. m. Even electricity was cut and was surprised at the quality of sleep I had, I slept like the proverbial baby and woke feeling so refreshed, after about 25 years of CFS and fibromyalgia it was incredible and was convinced of the harm we are doing to ourselves.

  13. PM
    Sep 21 - 2:50 pm

    Smartphones are «lifesavers» for the sickest and most light sensitive amongst us. Without my iPhone I would not be able to be on the internet at all, and I would miss out on useful apps (like heart rate monitor apps, symptoms variations apps, notepad apps, notification apps, social media apps etc) and not be able to keep track of research, treatment options, other patients’ experiences etc. Before I bought my iPhone I was isolated and had no opportunity to be up to date at all. It was actually several years wasted since I missed out on so much useful information and guidance that only the internet and the technology can provide.

    • Sue
      Sep 21 - 8:41 pm

      PM, Thank you for bringing up the issue of smart phones and isolation. Without my iPhone, I, too, would be almost completely isolated. My sensory overload issues are such that a large computer screen or even a laptop is just too much. Even my iPad is too bright. So my iPhone is a lifesaver and my window to the outside world, which I mostly only get to see on the way to doctors appointments.

    • Kate
      Sep 22 - 10:43 am

      If you have your iphone jailbroken, you can install “Dimmer” through Cydia, it lets you make the screen a LOT darker than the darkest built-in setting.
      I found the built-in darkest setting quite bright in the evening/at night, but with Dimmer it’s great.
      Dimmer does make it so dark that the screen can seem black/turned off in daylight – there is a ‘panic’ key combination to make the screen switch back to normal brightness (press volume up 4 times or something) so that when you accidentally lock yourself out with a too dark screen, you can easily reset it.

      • Johannes Starke
        Sep 23 - 12:04 am

        Thank you for the tip, Kate.

        I am a bit scared of jailbraking my phone because it seems technically advanced and would disable my phone’s warranty.

        Might wearing sunglasses be an alternative?

        • Anna
          Sep 23 - 4:28 am

          Hi, I use F.Lux for my laptop. It changes the lighting to coordinate with the time of day set to where you live. It has 5 different lighting options, daylight, Tungsten, Halogen, custom etc.

          The bright blue daylight screen lighting at night was a big problem for me before I used it. It has helped me a lot with being able to use my laptop at night without messing with my sleeping cycle, or causing headaches. Perhaps they also make a version for smart-phones.

          • Anna
            Sep 23 - 4:29 am

            Hi, I use F.Lux for my laptop. It changes the lighting to coordinate with the time of day set to where you live. It has 5 different lighting options, daylight, Tungsten, Halogen, custom etc.

            The bright blue daylight screen lighting at night was a big problem for me before I used it. It has helped me a lot with being able to use my laptop at night without messing with my sleeping cycle, or causing headaches. Perhaps they also make a version for smart-phones.

            If I could also shoot out the parking lot light that shines into my apartment I’d be all set. 😉

  14. Darlene
    Sep 21 - 3:56 pm

    Thanks for the tip on the sleepPhones, I’m going to try a pair. I haven’t made the jump to a smart phone yet, even though my husband (the engineer) is all about new tech. I have been trying new options for getting better sleep though, and have been listening to different kinds of audio tapes at bedtime. I’ve been appreciating this set of articles, I may attempt more adventurous technology in the future. :) It’s also inspiring to read about others who are trying to have the best health they can, using whatever resources are available (even if it seems beyond me). It makes me less likely to get negligent about caring for myself in the best way I am able. So. . . . . bring on the next post!

  15. Vickie
    Sep 21 - 6:42 pm

    Your headline is misleading. First of all, $60 or $70 is not “low cost.” Some people may already have smartphones and for them this additional use may be worth trying, but many people with ME/CFS are unemployed or underemployed, or on a fixed income, and cannot afford a smartphone.

    Secondly, this application only measures movement, not brain waves. They cannot tell if you are in slow wave sleep. If you are having arousals during sleep, this will not tell you.

    I’m glad this worked for you, but I was disappointed in the article. People like me with ME/CFS need real, research-based solutions to our sleep issues.

    • Johannes Starke
      Sep 21 - 9:01 pm

      Thank you for sharing your thoughts, Vickie.

  16. Anna
    Sep 22 - 9:06 pm

    Hi, Just a quick note because I need to get to bed. :) I agree with Sue in that I find these articles about smart-phones helpful. I’ve heard from one friend with CFS who recently bought one, and she wonders who she got along without one before now.

    I’ve been against smart-phones because I don’t need to be available to contact 24/7 or when I’m out and about at least 99% of the time. I use a cheap throw away for emergencies, costs $120.00 a year.

    But now that I know I could use one at home *without* activating the phone option/monthly charge and just use it for the apps I’d like to have one. (I didn’t know it was even possible to do that before I read the previous article).

    I also want to stay not too far behind the curve of technology, smart-phones are in our lives for good or bad, there’s no avoiding it. And I know there are many great apps out there that need a smart-phone in order to use them.

    That was my short note so say thank you for these articles. Please do one more. I learned a lot.

    Thank you,
    Anna
    Sorry for the bad grammar, etc. Sleep is more important at the moment. :)

    • Johannes Starke
      Sep 22 - 11:56 pm

      Your note warms my heart, Anna. Thank you :)

      I’ve heard from one friend with CFS who recently bought one, and she wonders who she got along without one before now.

      Amen. :) I really believe the smartphone can bring our functioning and well-being to a whole new level.

      I also want to stay not too far behind the curve of technology, smart-phones are in our lives for good or bad,

      I hadn’t even thought of this, which is such a great point.

      Johannes

  17. Issie
    Sep 25 - 11:13 am

    One thing that has greatly helped me with sleep is a sleeping eye mask cover. I found one by Bucky that has raised cups, so that your eyes don’t touch the fabric. It is also shaped to fit around your nose and will cut out all the light. I love it and it greatly improves my sleep. (I found mine at REI.)

    Issie

  18. Anne
    Sep 27 - 6:47 pm

    On the subject of the sleep app…does having the phone under a pillow change any results or does a Tempurpedic mattress change anything. The mattress does not ove like a regular mattress so I feel that the results are skewed.

    Thanks for any help.

    Anne

  19. Sandra
    Jan 03 - 8:06 pm

    I’m trying to not use electronics in bed and agree that the smartphone app can’t trace brainwaves where my sleep is messed up and it can’t help those brainwaves, either. That said, I have serious memory issues and use my smartphone to remind me of appointments and many, many other things. Don’t know how I ever did without it…well, actually, I missed a lot of appt’s or would show up a day early, etc. I have learned to be really strict with my sleep “hygiene”, which helps.

    Cort, I can’t tell you how much I appreciate the work you do. I’ve had rsd for 18 yrs, fibromyalgia for 17 yrs, and recently Dx’d with cfs, too. Thanks to finding your site recently I no longer have to search the web and vet all the info by myself. I hope to be able to start monthly donations soon (are they tax deductible?). Keep up the good work!

    • Cort Johnson
      Jan 04 - 11:14 am

      Glad to hear the Smartphone is such an aid, Sandra :)

      We’re not a 501 C 3 Non-profit so donations cannot be tax deducted unfortunately. We’d love the support though :)

Mobile Theme