August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
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My experience with Mickel Therapy

Discussion in 'Alternative Therapies' started by 90210, Nov 20, 2016.

  1. 90210

    90210

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    My expereince with Micklet therapy


    It does work to an extent, I will give it that. I went from 15% to 75% plus functioning.


    It works by first of all educating you about he mindbody comection. I have no quible with that and I would recommend a mindbody therapy to anyone with CFS (and there are MANY, like yoga, acupuncture, etc etc). The problem with Mickel therapy specifically is that, for some reason, they really exagerate with the picture they paint of the life you could haveā€¦ if only you would believe in it, set boundaries, and stick up for yourself and the like. (Like someone else here wrote,) they get you get all 'revved up' about your life.


    The trouble was, that in my case, although the "boundaries" made me feel better physically, they didn't actually work in terms of my life, people treating me any better or having "the life I wanted". Very much the opposite in fact. I did it years ago and I'm still feeling lied to by the therapist and basically devastated with how badly everything went. They encouraged me to do a lot of artwork which I've had to mostly throw away because no one would give it the time of day.



    The therapist saw himself as very "spiritual", used vague language, and when I called him back a few years after, and told him how badly things had gone, he basically just shrugged his shoulders, said it wan't his problem, and then implied that maybe I couldn't have "the life I wanted" after all. I tried to get him to explain things more clearly but he basically laughed at my confusion.


    I tried emailing Dr, Mickel about the whoel thing and he didn't answer me back. My life is kind of back to being nightmare again in a lot of other ways, due to toal loss of rationalty and ability to cope brought on by MT.
     
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  2. Hip

    Hip Senior Member

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    Hi 90210, can I just ask you some questions about you experiences:

    When you say you went from 15% to 75% plus functioning, how would you rate yourself on the ME/CFS scale of mild, moderate and severe?

    Where were you on this scale before you did Mickel Therapy, and where did you end up on this scale after the therapy?


    When you say that your functioning improved, were there any objective measures of improved functioning? For example, if you have POTS or orthostatic hypotension (OH) with your ME/CFS, these can be objectively measured at home using simple heart rate measurements or blood pressure measurements? Did your POTS or OH improve after Mickel Therapy?

    Another objective measure is how far you can walk without incurring major post-exertional malaise (PEM). For example, an ME/CFS patient may be able to walk to the shops which are 5 minutes way, but 30 or 40 minutes walk may cause major PEM. If you say you improved after Mickel Therapy, did this increase your ability to walk or exercise without getting PEM?

    And yet another objective measure is the type of mental tasks you can do and cannot do. The brain fog of ME/CFS often prevents people doing certain tasks, because they are to complex or difficult. For example, I used to work as a software programmer, but the brain fog of ME/CFS prevents me from writing software. However, on the rare occasions that I have had a brief remission from ME/CFS, my ability to write software returns, because my brain fog clears. So suddenly being able to do complex mental tasks that you cannot not normally do is an objective measure of improvement.


    The reason I ask these questions is because a therapy like Mickel Therapy or the Lightening Process may train you to feel better about yourself, and may train you to have raised hopes and expectations about life, which can then boost your mood, optimism and even motivation. But feeling more optimistic is not the same as clearcut objective improvements in ME/CFS symptoms.
     
    Last edited: Nov 21, 2016
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  3. 90210

    90210

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    I had CFS for 14 years in total, it fluctuated between moderate and severe. Half the time, I could just go out to get groceries, on good years I could socialize and maybe take like 1 class at university, or do a bit of volunteer work. Other times I had hard time just getting around my apartment, getting food prepared (had to get meals on wheels). When I did Mickel therapy I could go for a tiny walk three houses down from where I lived and back.

    I never had POTS or any objective measures of illness, like most CFS people I would think, that is what makes it so controversial after all.

    After Mickel therapy, I had no more feeling of having the flu at all, could go for long walks, swim laps (slowly) for an hour, and no post exertion malaise at all, go shopping, go out, etc

    My concentration was never all that bad with CFS, I could read pretty well and could concentrate even better after MT, though that disappeared a few years after my life stress started to majorly increase.

    At the time I felt I "recovered %100", however what this really means, I now know, is that (like someone else here wrote) I am of a very delicate disposition and still find it difficult to cope with the demands of modern, fast-paced competitive life: I need to do things at my own pace, for my own reasons, in my own way. This makes it very difficult to get money ( I don't work), have friends, or any kind of life. Of course it's good not to 'have the flu' and to be actually be able to get out of the house, which I barely did at all for last 5 years of my illness. But once the thrill of being able to take myself out for coffee had worn off, my life turned to garbage again. I hope this makes sense.
     
  4. Hip

    Hip Senior Member

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    Nothing wrong with that. In fact it can be classed as an admirable quality; you'll probably find quite a few healthy people that feel the same.

    When I was healthy, I had similar misgivings about the competitive, crude, money-oriented attitude of the yuppie generation that suddenly appeared in mid-1980s in London (I was in my early 20s at that time). It took some time before I found my own path, so that I could do things, as you nicely put it, "at my own pace, for my own reasons, in my own way." It is not necessarily easy to figure out an alternative route for yourself though; you need to do a bit of lateral creative thinking.



    Are you still in this relatively recovered state, or has your ME/CFS returned to the moderate or severe levels you used to have?

    By the way, do you have any sense or ideas about why Mickel Therapy worked for you? For example, do you think it might have worked by de-stressing your mind? Stress can affect immune function, so if you were fighting a viral infection, a reduction in stress could conceivably be beneficial. The fact that you say your flu-like symptoms disappeared after doing this therapy perhaps provides some indication that your immune response was improved.
     
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  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    This makes it a bit harder to evaluate what actually happened. I think many (if not most of us) do have objective measures of illness, so it is easier to evaluate changes in them.
    What do you think was the mechanism for this change?
    Do you think that the essence of the Mickel therapy was coaching you in coping with these difficulties of fast paced, competitive modern life?
    I guess I have to say that it doesn't really make sense to me as I am looking for changes in objective symptoms or tests. How was your life "turned to garbage again"? I am just not getting it, sorry!
     
  6. Woolie

    Woolie Senior Member

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    @90210, its quite confusing what you're saying. On the one hand, you talk about massive improvement, but on the other hand, you still can't work. That doesn't sound like massive improvement to me (more like a tiny bit of improvement). Is there some other reason why you can't work, other than the CFS?
     
  7. Hip

    Hip Senior Member

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    I think what 90210 is saying is that Mickel Therapy involves painting a picture of the extraordinary and charmed life that (they say) you are going to have. The therapy creates in your mind a set of beliefs that everything is going to work out wonderfully, and then you get high on this "drug" of your own strong belief in this incredible destiny that you are promised.

    This is probably why such therapies as Mickel Therapy and the Lightening Process advise against talking to the "naysayers", because if you are brought back down to Earth again by people skeptically challenging your beliefs, then you will lose the "drug" effect of this super-optimistic belief system that was inculcated into your mind by the therapy process.

    Who knows, perhaps this "drug" of strong positive belief in a wonderful destiny has serotonergic or dopaminergic effects in the brain that do possess disease-modifying actions. Only yesterday I was reading this article on Dr Andrew Miller's idea that low dopamine may be responsible for an undesirable amplification of the effects of inflammation in the brain, resulting in high levels of fatigue, cognitive problems, etc. So perhaps if a strong positive optimistic belief has dopamine-raising effects, it might act as an anti-inflammatory. Dopamine and optimism are certainly linked.


    Anyway, I think 90210 is saying that although this Mickel Therapy did seem to improve her ME/CFS, there is now this huge disconnect between the extraordinarily charmed life she was made to believe she was going to have, and the actual reality of her life at present. I think 90210 is saying that she feels lied to.

    I can certainly understand this; you get similar issues with people who were involved for many years with a cult religion, and were taught to believe a particular worldview which paints a great picture of the world and of themselves. Then when they leave the religion, there is the inevitable comedown to harsh, cold, mundane reality, and that can be difficult to cope with.

    Though 90210, if you are still in remission from ME/CFS, you are in far better position than you were when you had ME/CFS.

    Perhaps what might be useful is reading some self-help type books that have a strong positive thinking message. That might rekindle some positive thinking; I think a reasonable amount of positive thinking is always a good thing.
     
    Last edited: Nov 20, 2016
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  8. Valentijn

    Valentijn The Diabolic Logic

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    ME/CFS is so controversial because things like Orthostatic Intolerance (POTS is just one type) and Post-Exertional Malaise are objectively measurable, yet certain quacks insist on ignoring that evidence.

    PEM can be captured on a 2-day maximal CPET, or by measuring certain metabolites 24 hours after a single maximal CPET. And most patients do have a form of OI, though usually not POTS.
     
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  9. 90210

    90210

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    Yes, hip, your explanation sounds most correct.

    Yes I am still remission from CFS.

    Mickey therapy works exactly the way it says it works, so just look it up online. The essence of it that you REJECT modern life not accept it. As the therapist told me when I called him back, though, this is only a half truth and half possible, he himself freaking admitted as much afterwards. he was like "no actually you CAN"T totally reject modern life afterall, you just have to live in it". He either changed his mind or "lied".

    Since I'm not , obviously, very obviously, going into all the details of my current situation here....I don't appreciate being told I'm now 'better off', or whatever. You don't know the details. And yes there are multiple issues around working, all of which MT implied were going to take care of themselves, and none of which did.

    That's it for the questions folks! Look the rest up yourselves or just imagine the answers.
     
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  10. mermaid

    mermaid Senior Member

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    Some of what you said Hip, reminded me of a 6 week course I did once on Discovering Your Life's Work. Surprisingly it was funded by the Jobcentre but this was some years ago now, and there were all kinds of whacky things happening at that time down here at the far west of Cornwall, due to the funding from the European Community I think. We were encouraged to imagine ourselves doing just about anything we wanted to as a job but I was slowing down and had already been sacked and failed in several jobs because I could not keep up or was seen as 'less than perfect'

    Anyway, I was in my mid 50s, diagnosed with depression, but actually had ME/CFS not quite diagnosed, and trying to do an airy fairy course on my 'life's work' at that stage just sent me steadily downhill. There was such a huge disconnect with where I was at, and what I was being encouraged to aspire to. I ended up in floods of tears over the whole thing, and thankfully my counsellor advised me to withdraw.
     
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  11. Hip

    Hip Senior Member

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    I can definitely imagine how that might be the case, when you have ME/CFS.

    When I was young and healthy, I found that reading one or two liberating-your-latent-human-potential-type books helpful and encouraging. Sometimes it is good to focus on positive ideas of what could be, rather than the present situation you may be in.

    However, now with ME/CFS, I think I would find reading such books today annoying, and they'd probably make me feel a bit dejected, because we know with ME/CFS it's hard enough to engage and cope with even the very diminished and limited lives we are constrained to as a result of illness; so thinking about some high-powered exciting future is very incongruous with the situation of ME/CFS.
     
  12. 90210

    90210

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    An example: the Mickel therapist had recovered from CFS himself a few years prior. He told me that he lived a very free and spontaneous life, doing what he wanted when he wanted, traveling internationally at the drop of a hat, playing high-level sports, like that. So, I went out into the world thinking something similar was in store for me.

    I discovered later that at the time I worked with him,he had been receiving social assistance as the bulk of his income, still, and eventually had to go and get a job working ... for the government.

    People I had met after being recovered had either mocked me as an idiot, or else condemned me as lazy and out of touch with economic realities. I had been all like "no, you really CAN have the life you want", and just wound up so humiliated. I'm not saying its bad to get social assistance, but it certainly was what was allowing him to live spontaneously, and to trumpet his 'anti-establishment' values the way he did.
     
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  13. mermaid

    mermaid Senior Member

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    @90210 Yes, I can see shades of this kind of thing in what was going on for me, though of course mine wasn't being presented as therapy as yours was, though there was some psychological pressure.

    Your Mickel therapist seems to have set himself up as an expert, (with the backing of the Mickel training) and that is so easy to do unfortunately. I guess there is very little regulation on this kind of thing. It sounds as if you were already vulnerable while looking for healing and the results have damaged you emotionally whilst improving you somewhat physically.

    Years ago something similar happened to me within a church setting - I opened myself up to someone who was a essentially putting themselves up as an 'expert' and what was said to me was abusive and I ended up worse than I had done at the outset.
     
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  14. Woolie

    Woolie Senior Member

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    This is a really interesting thread, @90210. I hope you weren't offended by our questions. We really wanted to know.

    I have read on here a few stories of people who had genuine CFS (like you), and who "recovered" due to CBT, the Lightning Process, and whatever. Often it seems to be more a declaration of hope that a report of the reality. Many people were still really limited in their lives (for example, some still using a wheelchair for longer trips, or not yet able to work, or needing lots of bed rest, or whatever). So the CFS hadn't really gone away, the person had reframed it in their head. The limitations it imposed were still there.
     
    Last edited: Nov 21, 2016
  15. loops

    loops

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    Do you think that all these therapies, especially the ones with a relaxation/mindfulness type componant, like say the Gupta programme would be more likely to work with any PWME who had a hyperadrenergic componant to their illness. Could any benefits just be because they were a bit calmer?
     
  16. l2009

    l2009

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    I think they treat people really bad I don't trust them at all
     
    Last edited: Nov 23, 2016

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