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Neurofeedback for CFS/ME -any advice, comments appreciated

Discussion in 'General ME/CFS Discussion' started by redrachel76, Oct 28, 2015.

  1. redrachel76

    redrachel76 Senior Member

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    Here in Israel they are starting a new trial of using neurofeedback to treat Fibromyalgia. They are happy to include patients with CFS co morbid to the FMS.

    It means I get neurofeedback treatment free. Including even transport costs!

    Also there will be a free sleep test done at home before and after the research. That is a big advantage because those normally cost money as opposed to sleep clinics.

    It is to be done in the main Tel Aviv hospital, not some charlatan unsupervised clinic. They hope to publish the end results in a scientific paper in a few years time.

    My CFS/ME friend here in Israel tells me that I am missing a great opportunity for improvement if I don't take part in this trial.

    But I don't know if it will help. I would have to travel 2 times a week to do the neurofeedback training and that is hard for me. I am frightened it will make me worse or not help.

    The idea behind it is to use the neurofeedback to improve the patients sleep. The doctor in charge is theorizing that if sleep is improved in patients, then the symptoms of FMS will improve.
    Unfortunatly they will only check the sleep improvement and pain improvement as this is officially for "fibromyalgia" , which I have secondary to CFS/ME. (In Israel fibromyalgia is taken more seriously than real ME, which is totally unrecognized.)

    I already did a search for neurofeedback on this forum. I only found
    this old thread.
    http://forums.phoenixrising.me/index.php?threads/neurofeedback.678/

    What is neurofeedback?
    The more I read about it the more confused I get.

    I would be grateful for any opinions/advice on what to do.
     
    Last edited: Oct 28, 2015
  2. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Do you have sleep issues?
     
  3. redrachel76

    redrachel76 Senior Member

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    Yes,
    Just like all ME patients.
    Delayed circadium rythm was diagnosed formally in a sleep clinic.
    I could not sleep enough for them to check for apnea or deep sleep. But my sleep does not feel deep at all. I always wake up feeling terrible.
     
    Last edited: Oct 28, 2015
  4. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    So pretty severely affected.

    And how many weeks do you have to travel? (I may have missed that in your op)
     
  5. redrachel76

    redrachel76 Senior Member

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    6 or 8 weeks. Forgotten exactly how much
     
  6. Effi

    Effi Senior Member

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    @redrachel76 I have no experience myself with neurofeedback therapy. But I looked it up cause I'm always interested to learn sth new :)

    Although it generally sounds like it could be an interesting tool, I think it will be very exhausting. Apart from the travelling you'd have to do, it involves lots of concentration during the sessions - you'd be actively changing your brain wave patterns so you'd be paying attention the whole time, under the guidance of a psychologist. It also said somewhere that neurofeedback is used 'to unlearn faulty behaviour'. This to me sounds a lot like the philosophy behind CBT... Is there any way for you to find out what the organizer's stance is on FM? (i.e. do they adher to the central sensitization theory or other unproven hypothesis?).

    Also, I hope your friends aren't putting too much pressure on you about taking part. IMO you should feel more or less confident you'll get something out of it, and that it's not going to make you worse.

    http://psychcentral.com/lib/neurofeedback-training-for-your-brain/

     
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  7. helen1

    helen1 Senior Member

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    I looked into neurofeedback recently for my son with cognitive and mood issues as it can apparently help with some of those. The studies are mostly for ADD. For that, it looks pretty convincing. I got him to go once but he thought it was pointless and couldn't convince him to go again. There was no talk therapy involved, it was focusing on a screen and following instructions like in a computer game.Treatment consists of many sessions usually at least 10.

    There are no so called evidence based studies, just a scattering of small ones. I wasn't completely convinced it would be helpful, but was willing to give it a try as it looked somewhat promising and non-invasive with few side effects.

    I'm thinking of going for sleep issues too @redrachel76. If you do go, I'll be interested to see if your sleep improves.
     
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  8. Effi

    Effi Senior Member

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    I am struggling with this part... I don't have major sleep issues, so maybe someone who does could give me some insight? We can all agree that bad sleep isn't good for anyone. But isn't bad sleep in FM/ME a consequence of the underlying disease process? I find it hard to believe that good sleep would make FM symptoms improve more than marginally...
     
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  9. redrachel76

    redrachel76 Senior Member

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    Thank You Thank You!:)
    I did not know that it involved lots of concentration and was under a psycologist. That helps to know that.

    I know the Organizer. (Dr Jacob Ablin) He does graded exercise and and CBT for FMS sufferers in his clinic in that same Tel Aviv hospital :( , but on the other hand, he also was part author in the study that that showed hyperbaric oxygen helped FMS, which was a very unpsycological. (Here is the Cort Johnson article on it just for reference.)
    http://www.cortjohnson.org/forums/t...erbaric-oxygen-therapy-study-opens-eyes.2688/

    He is sympathetic to FMS and CFS , definitely not an evil type like Simon Wessley/White. He just believes FMS is central over sensitisation of the nervous system and brain due to either physical trauma or virus trigger and that exercise helps.

    Even if I don't go, I will let you know how my 2 friends are getting on. I too am really VERY curious as to whether it helps. That is part of what is giving me the dilemma of deciding whether to take part of not.

    My friends are starting the neurofeedback in less than a month, they were that eager to be in the trial. Whereas I feel very bothered about my ignorance on neurofeedback.


    So We will know in under 3months soon how my friends get on. I have 2 weeks to decide for myself whether to take part.
     
    Last edited: Oct 28, 2015
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  10. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    It seems to me that basically it treats the problems in ME as due to psychological issues. Like @Effi I am 99.9% sure that they are in fact biologically-based, and therefore need to be biologically treated, meaning that we need to change underlying biological problems.

    Many of us have found that sleep can be improved dramatically with diet and supplements. Others have found the same with pharmacological treatments (not just sleep meds).
     
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  11. ahmo

    ahmo Senior Member

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    @Effi I had profound sleep disturbance for a decade w/ ME, and intermittent insomnia life-long. When I got my B12 levels up, it stopped. I now enjoy the great good fortune and pleasure of being able to go to sleep, stay asleep, return to sleep easily if awakened. This was never available to me throughout my life until now. :)

    Good luck @redrachel76 :hug:
     
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  12. Effi

    Effi Senior Member

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    He can believe exercise helps all he wants, but those of us who have tried exercise to help our condition know from experience that it doesn't work, and in most cases even makes it worse. Central sensitisation is a theory that is popular for ME/CFS too, but many/most patients don't even have pain. So I have very strong doubts about that theory. I have never seen it proven anywhere. And if it were the truth, then the treatments they usually propose for it would work. But they don't. I don't have enough knowledge about FM, but if you have ME too, I would be very cautious... Please keep us posted (also on your friends' experience) :)

    @ahmo that is awesome you found sth to help you sleep!! :sleep: Do you feel like it had a positive effect on your ME-specific symptoms, like dr Ablin theorizes in the above trial? i.e. did it make your ME less bad?
     
  13. Tammy

    Tammy Senior Member

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    B12 has definitely helped my sleep also.
     
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  14. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    I have a friend whose brother does this. I don't know the brother, but the friend is very supportive of my disease as physiological, and angry about the way CBT has been misused in ME (she is a psychology student). She cannot see an application of CBT to treat ME/CFS.

    I'm told neurofeedback is used for epilepsy and so forth, as well as more contested conditions or for psychiatric-classified ones. It doesn't necessarily imply a psychological causation, although I think it does imply a "brain loop" problem (something I don't understand but JE discusses, so obviously not a behavioral issue thing), as opposed to things going wrong in cells throughout the body (rather than only cells inside the brain).

    My sister looked into it and asked advice from a muscle therapist, who said neurofeedback has been around a long time and not really gained any traction. In other words, if it worked very well or for very many people, everyone would be using it by now.

    Dr. Bateman says a difference between FM and ME/CFS is that people with FM alone are more able to exercise.
     
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  15. cigana

    cigana Senior Member

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    I recall Jamie Deckoff Jones saying it was one of the only things that ever helped her, so worth a shot imo.
     
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  16. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    Which doesn't necessarily mean GET is a good worth of time/energy for them!
     
  17. Riley

    Riley Senior Member

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    I know 4 ME patient that have done it. None experienced concrete improvements.

    They all did it for longer than 2 months. Probably 6 months - 1 year.

    It's not based on the assumption that ME is psychological. I believe the theory among practicitioners is that neurofeedback can retrain brain waves into normal states from abnormal ones.
     
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  18. Nielk

    Nielk

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    I have used neuro feedback successfully for years. It is not a cure but helped me with symptoms of sleep problems, muscle pain and mainly headaches.

    I had to travel too to the appointments which was hard but the treatments themselves were not tiring and many times I would feel immediately better.

    It helps with some psychological problems but mainly with neurological ones like epilepsy. It is interesting to me that the meds that have been the most helpful to me are anti seizure meds and neuro feedback has been helpful as well.

    In my current state I am unable to travel in a consistent basis so have stopped going for the time being.

    If the traveling is something that you think you can manage, I would encourage you to take this great opportunity to try this for free.

    My insurance does not cover it here in the US and the cost adds up quickly.
     
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  19. ahmo

    ahmo Senior Member

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    @Effi
    B12 definitely relieved a layer of neurological problems, including tremors, twitches, balance. Probably this was when my hypersensitivity to noise and light decreased.

    Everything I've done during the last 3 years has made me less miserable, with fewer symptoms. By less miserable, I mean not feeling like life on any given day is barely tolerable. Certainly undisturbed sleep makes life far easier, increases the chances of pleasure or joy, or just a settled and relaxed physiology. I had a poor night's sleep a couple days ago, thanks to :cat:, and was reminded how useless I am the next day. However, nothing has really made a dent in my limited cognitive and physical energy, PEM. Each day is still a task of managing, keeping stressors as low as possible, resting as much as needed. I was out for 2 hours yesterday, simple tasks and shopping; today I'm as useless and miserable as I was on the day after sleeplessness.:(

    I'd consider neurofeedback if it was on offer online. But my attempts last year just doing some entry level brain-training exercises was exhausting. My poor brain:ill::meh:
     
    Last edited: Oct 29, 2015
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  20. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    If you want to try and travel is your main barrier, ask if it can be done remotely. I've heard an offer of mailing equipment to use with a PC.
     
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