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Medical Sadism at CFS Central

Discussion in 'General ME/CFS News' started by Mindy Kitei, Dec 26, 2012.

  1. Mindy Kitei

    Mindy Kitei

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    Mindy Kitei
    CFS Central
    cfscentral.com
     
    Merry, Roy S, Kati and 1 other person like this.
  2. alex3619

    alex3619 Senior Member

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    There is something worse than being given advice like that ME patient. Its being coerced by insurance providers or psychiatrists into trying to act on it.
     
    Kati likes this.
  3. Kati

    Kati Patient in training

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    My jaw dropped on the floor.
     
  4. Little Bluestem

    Little Bluestem Senescent on the Illinois Prairie ❀❤✿Ƹ̵̡Ӝ̵̨̄Ʒ✿❤❀

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    While it was inappropriate in this situation, I do want to put in a good word for Tai Chi.

    I took a Tai Chi class while I was still able to work, though little else. It was a class for cancer patients that was also open to the general public. The instructor modified the moves for any participant who had difficulty doing it the regular way.

    Tai Chi is slow rhythmic movement that improves flexibility and balance. I think, but am not sure, that it also strengthens core muscles.

    Obviously it did not cure my ME. As I got worse I had to give it up and have forgotten the 'form' that I learned. I still remember it fondly.
     
    SOC likes this.
  5. caledonia

    caledonia

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    Yes, tai chi is fine if you actually have the energy to do it. The neurologist, besides being a narcissistic bully, was clearly out of his wheelhouse, but had trouble saying he didn't know what was wrong or how to treat it.

    It's not a neurological problem, it's a methylation problem. Poor methylation affects the Krebs cycle, and the mitochondria - thus you're not generating energy. Any kind of exercise will make things worse, not better. You have to fix methylation to get the mitochondria working, then you can think about exercise.
     
  6. alex3619

    alex3619 Senior Member

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    Hi Little Bluestem, I would like to be able to do tai chi, although my inclination would be more toward the Chen or Wu style. Tai chi is generally good advice, for most people, most of the time. Just being able to do something like tai chi would be a big improvement for me. Bye, Alex
     
    merylg likes this.
  7. taniaaust1

    taniaaust1

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    Unfortunately not an uncommon situation .. and yes completely insulting to have a doctor play down how ill we are by suggesting completely useless things (useless as no way could of this patient did this). It reminds me of how my CFS specialist told me about his 10km daily bike rides while suggesting I exercise more (when I cant even do a basic food shop alone as I collapse so often).

    The Wessely beliefs out there which try to push exercise onto even the sickest of us.. are doing great damage and have caused a VERY ANGRY group of patients as there is only so long a person can handle being put down by those who should be helping us in such ways before it affects one emotionally etc.
     
    merylg likes this.
  8. taniaaust1

    taniaaust1

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    The issue goes further than the lack of energy. Many of us have OI due to the illness (POTS, NMH etc) and tai chi for those of us who have OI can be very bad as its slow moving and standing so can be one of the worst kind of exercises for some of us.

    Also some of us have terrible balance issues and even can have balance issues just walking or fall while just trying to work around a corner.

    Anyway.. I just wanted to point out that not being able to do tai chi can be far more then just being about having lack of energy.

    It would of been more practical for this patient to be doing something like hanging out her clothes on the clothes line, then doing Tai Chi (that is even if she is capable of hanging out clothes).

    I was doing Tai Chi for a few years before I got ME/CFS with no issues at all but had to give it up due to ME even thou I had the energy still to do it (my virus was more virally in the first year rather then being about constant tiredness) and at the time didnt have severe OI at all.

    I had to give it up as it was actually giving me more body pain (almost immediately after it which would then stay for days.. I'd be in pain a couple of hours later due to it) and I actually strangely developed a big knot in my back after sessions which then restricted my movement (so instead of getting more subtle and stronger.. I ended up with restricted movement and weak), so then needed lots of massage sessions which only helped the knots caused by the Tai Chi a little. I persisted for months but this issue stayed and my knots it was causing just got worst so I ended up having to give the Tai Chi up. (it took about 2-3 years for what the knots the Tai chi caused to go away).

    My Tai Chi teacher said my energy wasnt flowing right...and blocked (causing the knots and then pain due to that). I ended up going to energy healing sessions with an International well known powerful Master (Tai Chi.. Kung Fu) who still couldnt clear my energy so it would be ok. (that guy was so powerful he used to give energy demostrations with getting you or someone else to lean right backwards so one was just balancing on the floor on the back of ones heels.. an impossible gravity defying thing and just hold them there using energy alone not touching them physically.. anyway he couldnt fix my issue either).

    I dont have issues with knots in my back and blocked energy 15 years later but I still cant do Tai Chi.. now due to the OI and the POTS . (I'd have the energy to do it..but I just cant stand and do it and be upright like that due to the low blood volume etc)
     
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  9. PNR2008

    PNR2008 Senior Member

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    I wanted so badly to do Tai Chi and tried two classes. I was stronger at the begining of this illness but even in the 90's I could not balance because of OI and couldn't follow directions because of brain fog. I still get left and right confused on bad days. They looked intense and dedicated on Star Trek The Next Generation and I definitely wanted out of this world but desire doesn't always take you where you want to be.
     
    taniaaust1 likes this.
  10. Enid

    Enid Senior Member

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    Sadism - try working your way out Accident and Emergency collapsing, psyche imposed. This has to be the United Kingdom utter failure /grasp of real medicine. Ignorants to scientific findings - held in sway here in the UK by the psychiarists.How long with our history have we to tolerate.
     
    *GG* likes this.
  11. Dreambirdie

    Dreambirdie work in progress

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    Sadly, this does not surprise me at all. I have had doctors say the most ridiculously insane and brutally unkind things to me over my 30+ years with this illness. Unless they are trained to deal with ME and have at least 20 years of experience working with it, they are not worth consulting with.
     
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  12. alex3619

    alex3619 Senior Member

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    Hmmm, I have said this elsewhere but it belongs here too. I finally got around to updating one of my docs this year on my medical history. I only saw him for scripts. He looked at the loooonnnnnggg list and said something like: " You know what they do to old racehorses, don't you?". I was not offended, but it did occur to me that that could be very hurtful to some of us.

    A lot of this stems from general medical attitudes. That stems from ignorance and bias. In turn that is fuelled by bad science, including psychobabble.
     
  13. caledonia

    caledonia

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  14. *GG*

    *GG*

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    I hope our system in the US does not creep towards the NHS system, but I would not be surprised. We are massively in debt, and I think the gov't has created a lot of our ills (physically and health care system wise).

    GG
     
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  15. ahimsa

    ahimsa Sick since 1990

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    Absolutely.

    Although I'm not able to work, or exercise, or do lots of things that I used to do, I'm doing better than many severe ME patients. I'm still able to get out to do errands every few days as long as I'm careful to get lots or rest and carefully pace myself. Taking short walks, for example, is a lot easier than Tai Chi. It's not a matter of lacking energy.

    Tai Chi requires standing still, and very controlled muscle movements, and both of those are difficult or impossible for someone with Orthostatic Intolerance. Those type of activities are sure to make me crash the next day. This is quite different from not having enough energy.

    I actually tried Tai Chi in the early 1990s, after I had to stop my usual exercise routines (hiking, weight lifting, stairmaster, etc.) but before I learned about my problem with NMH (type of Orthostatic Intolerance). Many times, right in the middle of class, I would suddenly feel sick, and dizzy, muscle twitching, etc., and have to sit down. Most times I'd make it to the chairs at the side of the room but a few times I had to sit down right on the floor where I was standing. And I always crashed the next day. Eventually I figured out that it was the Tai Chi itself that made me feel worse and I quit going to classes.

    It was only much later, after I had the tilt table test and learned about my NMH diagnosis, that I realized WHY Tai Chi classes (along with standing in line, hot showers, and so many other NMH triggers) made me feel worse. I think sitting Chi Gong (hope I spelled that right) might be an option for some patients with OI but I'm not sure whether that would work, either.

    The point is that it all depends on the patient. The doctor needs to listen to the patient and encourage the patient to either adjust the activity or discard it if there's a bad reaction. Blithely writing "Tai Chi" on a prescription pad is belittling and demeaning.
     
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  16. Little Bluestem

    Little Bluestem Senescent on the Illinois Prairie ❀❤✿Ƹ̵̡Ӝ̵̨̄Ʒ✿❤❀

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    The Tai Chi I was doing was not a traditional form, but a modern one developed specifically for health-care situations. Since it was being used for cancer patients, it may have been less vigorous than traditional Tai Chi.
     
    taniaaust1 likes this.
  17. Little Bluestem

    Little Bluestem Senescent on the Illinois Prairie ❀❤✿Ƹ̵̡Ӝ̵̨̄Ʒ✿❤❀

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    I do see your point and agree with it in principle. However, I think one of the reasons that I remember the Tai Chi so fondly is that it was about the only thing I was doing for pleasure. I was still doing my laundry, but I had pretty much given up housekeeping and cooking. Fortunately my job paid well enough that I could afford to eat out a lot (going to restaurants where I could make two meals out of one) and buy convenience foods. My workplace had a cafeteria for weekday lunches.

    P.S. The last time I visited my physician, she suggested that gardening would provide me with healthful fresh vegetables and be relaxing.
     
  18. BEG

    BEG Senior Member

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    I went to a local support group meeting for Fibro and ME/CFS where the main speaker for the evening was a woman demonstrating Tai Chi. I looked on in horror as she stood tall, brought her arms overhead and proceeded to stretch them at all sorts of angles and also performed all sorts of postures (for lack of a better word.) I could picture myself getting very ill after only minutes of duplicating her movements. I knew this woman; she had a diagnosis of CFS. The specialist involved with this group looked on. It was one of those surreal experiences whereby I wondered what were they thinking when they booked this speaker?
     
    Wildcat likes this.
  19. Sushi

    Sushi Senior Member Albuquerque

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    Your post reminded me of a dysautonomia support group I used to attend. We invited an Air Force pilot to demonsrtate a G-suit and also the physical moves that pilots are taught to use when they are under the force of extreme gravity--some breathing techniques, contraction of certain muscles, etc.

    These can prevent a faint for us too. Now this program was a hit!

    Sushi
     
    BEG likes this.
  20. barbc56

    barbc56 Senior Member

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    Classic hallmark of a charlatan/quack. It turns out to be the person's fault if they don't respond. For example, a. psychic not picking up the correct information about a person as the his/her mind is not receptive enough for the psychic to answer questions correctly. The leaning back on the heels is a trick used by hypnotist like you might see in an entertainment setting.

    I have a friend who teaches Tai Chi and had a class for those with disabilities. I would have loved to attend but just did not have the energy to get to the classes.

    There may be a reason for the person at the FM/CFS support group bringing in someone who is knowledgeable about Tai Chi because of the following study:


    http://www.ncbi.nlm.nih.gov/pubmed/22649476

    If I remember correctly, this study was eventually criticized as there was no control group. I'll l have to find the article that criticized the study.

    Barb C.:>)
     

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