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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Is 23andme still worth it?

Discussion in 'General ME/CFS Discussion' started by amaru7, Apr 4, 2014.

  1. Leopardtail

    Leopardtail Senior Member

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    Sporty,
    Its worth digging the report out and having a closer look, there's a lot of info in there and it's hard to take in with high fatigue. The low Mg measures are equally affected by Zinc & Selenium.

    I had Simultaneous testing of Mito & Intracellular minerals - that gave more info. The overall results give good clues.

    Had your ME improved much since taking the test?
     
    Last edited: Apr 27, 2014
  2. Sporty

    Sporty Senior Member

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    Hi

    Well thee wasn't much info on there that I could see. All I could remember is the 56% quota. Do you know I can't remember where I put it anyway mow. Myhill sent it thought as an attachment.

    Yes I am a bit better since starting it all 10 weeks ago. Apparently myhill suggest four months before "results normalise". How are you. Getting not then.
     
  3. Leopardtail

    Leopardtail Senior Member

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    I have gone from bed bound to able to walk around, go shopping and keep myself (shaving, teeth, showering etc). I can now concentrate for about half the day, so massive improvement. I just added Selenium (1 week ago) to my list of supplements and am seeing further improvement already.

    If you are very ill, I agree it takes about three-four months before you feel marked improvement. Getting back to fully normal (meaning full time work) takes six months plus a further six months for each five years of illness. Just bear in mind that as you start to improve, you need to continue resting until your body heals.

    I asked for a copy of the test results, it was roughly five pages of PDF.
     
    amaru7 likes this.
  4. taniaaust1

    taniaaust1

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    thanks but I actually already take Ashwagnandha as a CFS specialist put me onto that probably a couple of years ago now. Unfortunately in my case I havent noticed it to be any help to anything. I suspect thou next time I see that doctor he probably will tell me to raise the dose as Ive never been back to him since he first put me onto it.

    That common brain herb (oh I cant remember what its called right now).. that too didnt help my brain any. The only things which have so far helped my brain have been fresh juicing of organic veg, molybdenum and good forms of B12. I must of tried by now at least 50 different supplments, vitamins and herbs over the years Ive been sick.
     
  5. taniaaust1

    taniaaust1

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    Was that study that recorded 4x the amount of deaths, was allowances made for that group having a higher risk of death from that issue in the first place?

    The people who worry about dying of heart disease, usually have it in their family and have experienced family members dying with it, so are at a higher death risk from the illness to start with due to genetics and environmental factors habits eg some families smoke more then others.
    ..........

    Im not thou denying how thought can play a role too. I once read about how someone was hypnotised and then poked in the arm with a pencil which caused burn marks to appear on the persons arm. The person had been hypnotised into believing the pencil was a cigarette!
    ..........

    One thing thou for most of us, a study showed that ME/CFS arent as susceptable as much to placebo affect as healthy people are. Maybe this is due to how many times we have told ourselves that a new supplement or drug is going to help us, only to have it fail to help. We no longer trust these will work (so maybe we could even cause a kind of reverse placebo affect?).
     
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  6. taniaaust1

    taniaaust1

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    My techniques are to try not to dwell on the bad stuff thout that can be hard at times cause I have so much bad stuff going on in my life. I try not to dwell on it by trying not to think about it much. I distract myself from it all I can, I do that by trying to fill my life with good things whenever I can, things which will give me joy to offset the bad stuff. By doing that I can keep a balance in my life and not often end up being overwhelmed by the other stuff.

    I try to add a lot of "interesting" things into my life, small things I can study eg this year I did an experiment with trying to grow a lotus (it failed but I did get to the 3 leaf stage and I'll try again next summer). I now have frogs as I did a frog pond last year and got some tabpoles (it took me a whole year to get done with some help), so now have interest in them. I can sit by the pond and watch these. If you want to be happily ill, you need to keep interests and do things to stimulate your interest in things.

    I currently have 3 interests on the go (Im currently trying my hand at growing some dwaft date palms trees from seed. I currently have the seeds in my wardrobe hoping they will shoot. Im glad about this post as I'd forgotten about them for the past week, they'll need watering). Im also trying to study online marketing (Im trying to work out how to get more home support and came up with this to earn some money to pay someone to come and help me if I get lucky and pull it off).

    Dont allow your life to be all about losses and try to "gain" things whether knowledge or something else while u are sick then its far harder to think about "wasted time". It is possible even if very sick to be slowly over time learning something new. I may not be able to go and study something out of home but I can watch and learn about a flower in my garden.

    I also always have plans, Im not about to quit and give up on getting my life to be better or trying to get me to a healthier state. The plans help me to hold onto hope.
     
    Last edited: Apr 28, 2014
  7. A.B.

    A.B. Senior Member

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    What I found is that people facing concrete seemingly unsolvable problems tend to turn to the spiritual, to various illusions, to psychology, positive thinking, to denial, and similar things to try and solve their problem, but it never works. It is harmful in the long term.

    What actually helps is acceptance and courage to face reality, having accepting friends and family, and most importantly, concrete things/interventions/help.
     
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  8. Sporty

    Sporty Senior Member

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    Hi

    Oh no I never had five pages. As I said I just had an attachment from myhill. A lot of it I can't understand anyway so I just went with what she recommended.

    I hear what you're saying but I can't help thinking there could be more wrong with us....so I keep looking for answers. I've tried the mito supplements before you see without any success. I will give it until my next phone consultation with myhill before changing anything though.

    Glad to hear you're improving! Keep it up! :0)
     
  9. Cheesus

    Cheesus Senior Member

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    I fail to see how developing spirituality is harmful in the long term? I also fail to see how resolving psychological issues and positive thinking are harmful?

    People fully recover using interventions such as Gupta and the LP, so your claim that it never works is just entirely untrue. It is dogmatic positioning not grounded in fact. Whether or not you or I can regain full health this way is another matter, but it does happen. Even Dr Myhill talks in her new book about how some people fully recover by working through psychological issues, and that doing so is a huge boon to her treatment protocol (2014, Pp. 151-155). Furthermore, she cites that people who recover fastest are those that commit to these types of interventions (p. 185). There are also multiple other well documented cases (Barton, 2008). The classical retort to these stories is "well they didn't really have ME", however this is blatant denialism in the face of overwhelming anecdotal evidence and is born of historical (and understandable) resistance to the psychologising of ME. It is time to redefine how these interventions can be used not just in ME but in chronic illness generally.

    Also, you contradict yourself when you say spirituality and psychology are harmful but acceptance and courage to face reality are beneficial. Buddhism, for instance, is a philosophy/psychology grounded entirely in acceptance. It is the entire point of the exercise. You sit with what is and develop a deep equanimity and familiarity with the conditions of your existence:

    So which is it? Is spirituality harmful or is acceptance beneficial?

    Furthermore, mindfulness - a spiritual/psychological exercise - is proven to have various physical health benefits, such as altering gene expression to improve mitochondrial efficiency and contributing to the development of myelin and the protection of teleomeres.

    Dogmatic posturing regarding the use of the mind in treating CFS/ME is a disservice to the CFS/ME community. I am sorry if this post has seemed aggressive but the point has to be made.
     
  10. Cheesus

    Cheesus Senior Member

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    I haven't looked at the actual study, but in that article Chris Kresser says that both groups have the same risk factors, so if we go by what he says then your explanation can't account for it. That was the point of me citing it.

    I saw that about the placebo affect. I think some bodily systems are more susceptible to the placebo affect than others - though from what I heard the nervous/immune system are right up their at the top of the most malleable, so I am not sure how that translates to us!
     
    Last edited: Apr 28, 2014
  11. A.B.

    A.B. Senior Member

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    People who seek a solution to concrete health problems in these things are misguided and mistaken.

    I would describe the claim that people fully recover with these interventions as not grounded in fact. Even if somebody recovers while following one of these interventions, it is not evidence that the intervention was actually the cause of recovery. I remember reading about a program for youth from unfortunate circumstances that sought to help them develop into responsible adults rather than becoming drug addicts, criminals, etc. like many of them do. There was a control group, and both groups did equally well. The difference is that the people who in the program group attributed their successes to the program. Some people with ME/CFS do recover spontaneously over time, and will likely attribute the recovery to whatever intervention they were doing at the time. Periods of temporary remission are also common, and patients may report a recovery when asked during one of these periods.

    There is a difference between resorting to spirituality in the hopes of solving a health problem and practizing spirituality for its own benefits. This line is easily blurred. Practizing acceptance in order to solve a problem also seems like a contradiction to buddist philosopgy to me.

    Getting a daily dose of sunlight, learning a new language, listening to music, having a pet and many other things also have health benefits. None of the things you or I mentioned here will cure serious illness.

    Having unrealistic expectations from these things is the self deception I'm warning about. People who promote spirituality and psychology are sometimes guilty of creating a sense of mysticism and over the top expectations.

    I could say the same about your position. Where is the evidence that these things really help? I've been ill for 15 years and have engaged in my own fair share of self deception, so excuse me if I'm skeptical.
     
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  12. Leopardtail

    Leopardtail Senior Member

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    What have you found that DOES help you AB?

    Leo
     
  13. Leopardtail

    Leopardtail Senior Member

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    I also got an attachment from MyHill but I did request copies of the test results. It was heavy going to read and I had already done a fair bit of 'book learning' on this stuff before I had the test done, so I can understand if you found it hard going.
     
  14. A.B.

    A.B. Senior Member

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    Acceptance rather than trying to change myself, having supportive friends and family (and minimizing contact with those who are unsupportive), finding a healthy diet (which turned out to be simple), learning illness patterns and ways to deal with them (ie. fluctuations, resting sooner rather than later), learning which supplements/pharmaceuticals are helpful, learning programming when I have spare energy, and not taking psychobabble seriously.
     
    Last edited: Apr 28, 2014
  15. Sporty

    Sporty Senior Member

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    Did you just follow Myhills suggestions tho?
     
  16. Cheesus

    Cheesus Senior Member

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    I appreciate that you have greater experience than me, and I value that experience. However, I have to contrast it with Myhill who has treated 5000+ patients in the past 30+ years. She is hardly a psychobabbler, is she?

    To me it seems very obvious that if you're sad, anxious, stressed, tense, etc., then this has a knock on affect on other bodily systems and we can improve prognosis by alleviating those states. For instance, stress depletes hormones, unbalances the immune system, causes chronic inflammation, contributes to intestinal permeability, prevents restful sleep and so on. If someone is cramming supplements in their mouth to replete glutathione yet isn't addressing a major cause of glutathione depletion then there is something wrong with that picture.

    I concede that the heterogeneity of PWME means that this applies to different people differently, and in some cases may not apply at all. I do not think it is a panacea.

    It again comes back to a dogmatic belief system grounded in a historical (and, again, understandable) resistance to the psychologising of ME. I am from a generation that wasn't marginalised by the psychiatric lobby so I don't hold the same grievances as you do and I think that helps me to see the potential of these treatments more clearly.

    Furthermore, I don't think this is just important for PWME, I think mind/body techniques can be helpful for a huge variety of physical illness:

    Gregg D. Jacobs. The Journal of Alternative and Complementary Medicine. December 2001, 7(supplement 1): 93-101. doi:10.1089/107555301753393850.

    http://online.liebertpub.com/doi/abs/10.1089/107555301753393850

    Also, I beg to differ: a dose of sunlight does prevent and cure serious illness (e.g. rickets).

    ETA: I do agree with you that presenting these things through the veil of mysticism is unhelpful. I think it is something grounded in common sense and should not be the provision of mystics and those with their heads in the clouds. I think we can find a realistic middle way to how these things can help us.

    -------

    It does seem like a contradiction in buddhist philosophy indeed, and it is something that newcomers to buddhism often wrestle with. However, it is a case of finding a balance between not fighting my experience in this moment and using the information I gather from my experience to inform what happens next. For instance, if I am thirsty I don't get all uptight about it and worry I am doing myself damage or whatever. I think "ah, this is what thirst feels like, I had better get a glass of water". Obviously this is a basic and crude example but I hope it illustrates how this works. Buddhism is a practice and deep understanding of this kind of distinction develops overtime.
     
  17. A.B.

    A.B. Senior Member

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    I thought so too. There is a clear correlation between physical symptoms and mental ones, and we're all told about the mind affecting the body (we're rarely told about the body affecting the mind). Then I learned how supplements and pharmaceuticals can influence mood, thoughts and behavior.

    Have you ever taken thyroid hormone, cortisone, received intravenous B12 or similar things? I have, and I'm now of the opinion that mental and emotional well being is the result of physical health, directly and indirectly. I think the effect of the mind on physical health has been way oversold. Eating fresh fruit and vegetables every day, getting good sleep is a lot more important than trying to be positive and generally trying to control one's thoughts.

    One can see why mind over matter is a seductive philosophy to those facing "unsolvable" problems in life: it gives the illusion of being in control. It's the same reason why someone would pray to a higher force.

    Psychological explanations for poorly understood health problems are nothing more than superstition. History shows that illnesses labelled psychosomatic almost inevitably end up being proven to be organic illness once research has sufficiently advanced.
     
    Last edited: Apr 29, 2014
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  18. Leopardtail

    Leopardtail Senior Member

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    I followed Titelbaum's suggestions (Ribose + ALCAR + Creatine + MagMalate + NADH) and made my own decision to add Selenium following the report from Myhill.
     
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  19. Leopardtail

    Leopardtail Senior Member

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    I am strongly inclined to agree. if you do not produce enough ATP (which we don't) then you don't produce enough Dopamine, enough Serotonin, enough Melatonin, enough Triiodotyrosine all of which affect both mood and physical health. The root of all of these things is physical though. On the other hand learning to use your mental resources wisely, learning not to push too hard and self-crash (meaning a slightly less can do will do personality), developing a thicker skin all help to live we one's ME an improve one's chances of recovery.

    Mental strategies have a role, a minor role in recovery that is strictly secondary to dealing with a PWMEs physical root cause.
     
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  20. A.B.

    A.B. Senior Member

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    Yes, they do play a role, but are not causative or curative.
     

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