New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Lightning, reverse etc. says cortisol is too high, but what if too low?

Discussion in 'Alternative Therapies' started by Wendy B., Jan 20, 2016.

  1. Wendy B.

    Wendy B.

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    I'm thinking of doing one of these types of therapies. I know more about amygdala retraining than these others. Question: My understanding is that the stress/cortisol response is considered to be too high in cfs, but so many of us (me included) have too low cortisol on testing. Can someone explain this discrepancy? Thanks for any insight.
     
  2. Esther12

    Esther12

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    I think that the Lightning Process and Reverse Therapy are just quackery.

    I don't think that your cortisol results not fitting with their theory would make any difference, but doubt either are worth your time or money.
     
  3. Hip

    Hip Senior Member

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    Most studies have shown ME/CFS patients have lower cortisol levels throughout the 24 hour cycle: this study, this study and this study found a cortisol was significantly lower in ME/CFS patients across the whole day.

    This study found the cortisol awakening response (CAR) is also lower in ME/CFS. The CAR occurs around 30 minutes after awakening in the morning in some but not all people.
     
    Last edited: Jan 20, 2016
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  4. roller

    roller wiggle jiggle

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    what cortisol?
     
    Last edited: Jan 20, 2016
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  5. Wendy B.

    Wendy B.

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    Right, so do you or does anyone know how, given that pcfs tend to have low cortisol, Lightning therapy or Reverse or Mickel type therapies make sense of their ideas that pcfs have an overactive stress/cortisol response to events, activities, life etc? They must have some explanation. I haven't read any of their stuff in depth.
     
  6. alkt

    alkt Senior Member

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    they don't do science they sell cognative behavioral therapies based on the nonsense of wrongful illness thinking apparently lots of people who become ill because they think they are ill and anyone who is naive enough to agree with such nonesense can be parted from their money very easily. please look up blogs relating to the lightning process .
     
  7. cmt12

    cmt12

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    It's common to see high cortisol levels when someone first becomes symptomatic followed by lower levels later on as you said. I don't know their explanation, but my view is that the stress response is still overactive but cortisol production has been down-regulated as an adaptive response. It makes the most sense to me.
     
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  8. ukxmrv

    ukxmrv Senior Member

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    There is no evidence that people with ME and CFS have high levels followed by low levels. Individual cases maybe but no good solid research to back up this claim and it is important to have evidence as the whole theory hangs on it.

    With out evidence or some science to back up their theories then this group of psychobabblers have nothing.

    When Gupta published his paper in Medical Hypotheses I took the time to read it and check the references. There was nothing relevant in any substantial way to CFS or ME
     
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  9. xrunner

    xrunner Senior Member

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    There's no study showing that's the case. It's a lie because someone who makes a living out of also treating people with CFS, probably looks at scientific literature and there's nothing to back that up and they're most likely aware of that.

    Since they're marketing a psychological treatment, and they know people with CFS have low tolerance for psychological explanations for their illness, they mask it with all sorts of dreamt up theories to link it back to some "biological" process. For e.g. in reverse therapy they talk about "body mind" and "critical mind". But there's nothing biological underneath.
    Their treatments are based on changing people beliefs about their illness and "unhelpful" attitudes and behaviours such as for eg. fear of activities, focusing on body symptoms, even hanging around CFS forums etc.

    Then it's up to you to decide whether changing the way you think may help you with your illness.

    As for me, I used to have serious problems with stress and anxiety which I tended to naturally link to CFS. I did CBT for years, later tried mindfulness-based CBT, then kabat-zinn meditation and body scan programmes, briefly tried reverse therapy, then the gupta programme with zero results.
    So, as far as I'm concerned the stress response has no place in explaining ME/CFS.
     
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  10. Hip

    Hip Senior Member

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    I don't think these therapists do any biochemical testing to confirm their theories, so the idea that an overactive stress response > leads to increases cortisol > which possibly allows viral infections to worsen has not been validated, and so this idea should be taken with a pinch of salt. It is possible, but nobody knows.

    Though note that the fact that ME/CFS patients tend to have low 24 hour cycle cortisol, and low morning awaking response cortisol, does would not I guess preclude the possibility that stressful episodes might raise cortisol in ME/CFS patients temporarily for hours or days.

    Also, note that low cortisol in ME/CFS patients is the tendency found in these studies; however, you do also find some ME/CFS patients who buck the trend, and have high cortisol.



    In terms of deciding whether a therapy like Lightning therapy or Reverse therapy might possibly help you, I would not focus too much on how and why a learned over-stressing response to situations could be worsening ME/CFS, because even if such as response is worsening your condition, nobody is really sure of the mechanism.

    The mechanism might be a stress–cortisol connection, or it might be some other connection, like say the connection between stress and the autonomic nervous system (sympathetic and parasympathetic nerves), or the link between stress and brain arousal.

    I think the issue should be more whether you yourself feel that you may have some locked-in learned stress responses in your brain that a therapy could help defuse and un-learn.



    You have to make this decision yourself, because on this forum, the general stance of members here is very anti-psychological therapy. This anti-psychological therapy stance understandably arises because some influential psychologists (the Wessely school) have proposed that ME/CFS an "all in the mind" disease, that is maintained purely by psychological factors. Most ME/CFS patients myself included, think these Wessely school "all in the mind" theories are a lot of dangerous nonsense and an extremist view, which is why there is this anti-psychological therapy stance among so many ME/CFS patients.

    However, it is possible that in certain individual cases, psychological factors such as a learned stress response could be worsening ME/CFS, and so it may be worth exploring psychological therapies (not CBT though, because I doubt if this will help defuse any learned stress responses that may exist in the mind).



    You might be interested in @sueami's story here of major improvements in ME/CFS after doing Reverse Therapy. She also wrote blog articles here and here about how Reverse Therapy addressed her learned stress responses. The following paragraphs she wrote explained her own particular way that she had learned stress responses:
    I think all her improvements were obtained by doing 6 Skype sessions with a Reverse Therapy therapist over a period of 5 months.
     
    Last edited: Apr 2, 2016
  11. A.B.

    A.B. Senior Member

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    The idea that CFS is caused by elevated cortisol levels or an hyperreactive HPA axis is pseudoscience. It's an idea that is useful for selling a therapy to ignorant clients.

    If you actually measure these things, as you said, there is a tendency for lowish cortisol and hyporesponsive HPA axis. And CFs isn't caused by these things either, or we would all be cured by a little bit of extra cortisol.
     
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  12. daisybell

    daisybell Senior Member

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    I know these treatments have no place in my disease. I tried reverse therapy and it did nothing for me. My 'ME' is not something that can be cured by psychological therapy - which is a shame because that would be a great outcome!

    However, I know two people who appeared to have classic ME who have got better after reverse therapy. I can't explain that! Maybe they would have got better anyway, but obviously what they had is not what I have! I don't think either of them had any other health issues such as thyroid dysfunction, which a lot of us here on the forum have, so perhaps they represent a sub-set who actually have a stress-related illness that is conducive to a psychological treatment. Who knows....

    I also know one person who had lightening therapy, and is a devout believer. I read the literature around that and this approach disturbs much more as I can see the possibility of great harm being done by it. I wouldn't touch that with a barge pole.
     
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  13. Hip

    Hip Senior Member

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    That is one aspect of the Lightening Process that I find a little disturbing: the fact that it is set up like a cult religion, and a secretive one at that (because the one rule about the Lightening Process is: you don't talk about the Lightening Process).

    From what I can gather about the Lightening Process's techniques, it tries to change your mind all round, geting you to do things like making positive affirmations, trying to stop negative thoughts, and getting to do a whole array of New Age-type therapies. I'd feel embarrassed to do some of the Lightening Process activities.


    By contrast, Reverse Therapy seems quite sober and sensible. It seems to just focus on any learned over-stressing responses you may have. It does not use a religious cult indoctrination approach, as far as I am aware.
     
    Last edited: Jan 21, 2016
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  14. jimells

    jimells Senior Member

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  15. WoolPippi

    WoolPippi Senior Member

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    Hi
    my adrenals are shot (low cortisol) still my Stress Response is ongoing all the time. These two are two different things.

    The Stress Response is an action by the nervous system, like putting a foot down on the gas pedal and gripping the steering wheel while screaming at other drivers.
    The cortisol is the gas and your tank may be empty. Doesn't stop the driver from demanding it. all. the. time. and panicking over the fact there's no gas.

    And I'm in recovery atm thanks to Reverse Therapy :):balloons: and have been in the past with Gupta.

    I'm willing to answer your questions.
     
  16. hvac14400

    hvac14400 fatty & acid : )

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    yea - my morning cortisol always higher than upper end and my 24h one is like 1.5-2 times higher than top limit, so f#ck trends! : )
     
  17. Forbin

    Forbin Senior Member

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  18. WoolPippi

    WoolPippi Senior Member

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    I'm in recovery from ME thanks to Reverse Therapy (RT). Cost me 300 dollars total.

    However, my cortisol is still low. I have two conditions: ME and low cortisol. They each have (slightly) different symptoms.

    Low cortisol typically presents with: fatigue, nausea, no resilience for stress of any kind, low blood pressure. Lying flat and eating salt makes you feel a bit better.

    ME feels more like a system wide failure. You just want to lie down and give up. "I'm already dead, why am I still breathing?"

    For the cortisol I need blood tests (ACTH and electrolytes. Not cortisol. Cortisol alone says nothing. That's why it's not important whether it's high or low.) and supplementation with hydrocortison. I need to know about HRT, the hormonal cascade and adrenal forums on the internet.

    RT won't heal ME. But it will give the body control over its own weapons to fight ME with. You'll remove the signal scrambler which has the scientific term Stress Response. You'll alter it into the Relaxation Response which you know from the research into benefits of Meditation and Mindfulness.

    It might even give your adrenals the chance to heal up and put out cortisol at normal levels. Which your body needs for succesfull fighting ME.

    (please stay away from Lightning Therapy. Sounds like a click/cult. And you don't have to subscribe to the theories behind Reverse Therapy for it to work. I don't.)
     
    Last edited: Apr 2, 2016
  19. Hip

    Hip Senior Member

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    What kind of improvements in your ME/CFS symptoms to you noticed after doing Reverse Therapy (RT)? If you grade the severity of ME/CFS on the scale of mild, moderate and severe, where were you on this scale before you did RT, and where did you end up after?

    Did you find that your RT sessions addressed any particular area of your mind, or addressed any particular learned stress response that you had?

    In the case of @sueami's story of major improvements in her ME/CFS after doing Reverse Therapy, she explained her own particular learned stress responses in the following:
    She also wrote blog articles here and here about how Reverse Therapy addressed her learned stress responses.
     
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  20. WoolPippi

    WoolPippi Senior Member

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    The wired and tired disappeared completely.

    Not that I became physically active suddenly, I still took my horizontal rests on the couch. But now because I wanted to and looked forward to an hour of lying down leisurely.

    my body became relaxed, warm and "happy" on a daily basis. Happy = at ease, smiling, confident.
    I sighed a lot, sighs of relief.
    I could eat things that I wouldn't with ME and not feel ill afterwards (coffee, pie)
    My stamina went up and I could go out and walk into town for an hour or visit with a friend for two hours.
    I experienced normal tiredness for the first time in years.

    Before RT I had fallen back to moderate grade. Housebound. Spend large portions of the day lying on the couch. Could not cook a meal and take a shower on the same day, I had to alternate. Mild consistent brainfog. Liverpain. I rated myself at 45% of a healthy person.

    After RT I went to no ME.
    I could take walks outside and could shower on the same day. No brainfog. I still paced myself though, rested a lot.

    The last. Basically it focusses on the same thing that James L Wilson in his book "Adrenal Fatigue, the 21st century stress syndrome" calls "the energy robbers" (p103) and dealing with them.
    I had learned to respond a certain way to people, situations and thoughts that is not healthy for me/my body.

    A lot of RT-clients need to learn to say no to people and their demands. They also need to learn to take action, to do something about that what hurts them. They'll then see that the world will not devour them, that they can take up more space and express themselves more clearly without negative social consequences.

    I fall in the 40% of RT-clients who actually need to learn to live life slower, to calm the fuck down. To not try and control everything. Not take action, not right the world all the time. I needed to learn that it's ok for me to waste time and loiter about. Smell the roses.

    A second thing I needed to learn is that I am safe. Here and now. That there is no physical threat imminent. (I experienced severe stress as an infant and as a result my nervous system acted like we were never safe, always on full alert.)
    I knew I ought to feel safe but I did not know how to actually believe it. Make my body feel it.

    the RT councelor did not touch upon my yought or psychology. They are not interested in how I came to be this way one bit. They are only interested in the here and now and in how my chattering mind is bombarding my body with impulses that get translated into hormonal messages.
    Whenever I started talking about yought or nervous system she'd wave it away and instead would ask what I felt in my body, right at this moment. This is what they do, focussing on the body instead of the head.

    RT taught me the tricks to make my two messages ring true.

    The trick is quite simple: enter a relaxed state of mind through mindfullness/meditation and than read your secret message from a piece of paper. And then feel it. Feel it in your whole body, being true. Do this multiple times a day.

    Easy as it sounds, the simplest way of achieving this is doing a Skype session with an RT counselor. 1: They teach you the meditation part quickly. 2: They can decipher your "secret" message more easily than you can. 3: And they can show you how to actually feel things in your body. How the body communicates with the head.

    With us, our heads are getting in the way of bodily signals all the time. Analyzing things, thinking things, theorizing, worrying, scanning the body for pains. You just don't pay attention to the actual feeling of being (in) your body. We benefit greatly from someone who cuts through all that jibber and shows another way of being in the world/time. Of existing. (I detest how goofy I sound but words lack)

    (I tried DIY RT for a four months. After all, I understood the tricks and I pretty much knew my messages and I'm a smart cooky. But it didn't work. It is so much easier to follow an example instead of trying to do it yourself. I regret the time I wasted very much. Just because I wanted to save myself 80 pounds)

    4: They show you a few other tools you need so you can implement the new "you" into daily life.

    - focus on what makes you happy, with the specific goal of getting your endorphines flowing every day. I had to make a list of activities that would make me happy, were I symptom free. And then I had to do things on that list. They make sure it's a good mix of active and rest, of social and quiet time.

    - It also addressed the learned thinking-as-an-ill-person. I had to learn to think as a well person. But this was at the end of my RT counseling (only 2 full sessions, at 80 British pounds a piece)

    she kickstarted me on RT. I used the same councelor she did, Lyn White in the UK who works via Skype with people all over the world.
     

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