Life With Limits 10 - Where Am I?
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Published 2012-10-23
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All Comments (19)
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Hi, thanks for the comment. I am indeed very lucky, especially when it comes to having an organisation such as the Open University available to me. I missed out on college and university due to my ill health and it is great to have the opportunity to further my education even though I am mostly housebound.
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Thank you very much and I thank you for your comments as well, I hope mine have been helpful to you and the information is helpful too. I don't think you can take any one thing as being a perpetuating factor (like the mitochondrial malfunction) as there may be other contributing factors such as a maladaptive stress response, adrenal impairment etc. It really is an integral approach which is the way forward. One of the papers Alex published was about the integral approach, which is not (cont)
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Mitochondrial malfunction is what I think my nutritional therapist is looking at next - I have an appointment tomorrow and it makes a lot of sense. To me, all of the protocols and information the OHC have provided for me does make sense, which is why I recommend them to friends. A friend - who is much better now - recommended them to me :)
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(cont.) considering the stressful lives people these lead these days. That and as we try understanding CFS/ME more more people may be aware that it is that which they have, and not something else they previously thought was the problem. Hope that all makes sense.
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The reason why I like the OHC approach is that many of the people who work there have, themselves, had and recovered from CFS/ME. A lot of people in the research area do consider CFS/ME to be a complex multi-system disorder now instead of this psycho vs physical thing. Have a look at all the links I have sent you in the message and see what you think. I don't believe just diet or just pacing or just any one thing can help but a combination of all of them in some respects can. Debates are good!
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In long-term illness in which you have to learn to live with it, you can become so used to living with it that it is quite easy to fear not having it anymore. It's sort of like Stockholm Syndrome in a way. I know, for me, I REALLY want to get better, but I still fear aspects of it. Sometimes being ill is 'easier', for sure. When you look at the physiological impact of long-term stress on the body - leading to 'burnout' - it is hardly surprising that the likes of ME/CFS are increasing (cont.)
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Thanks. So far I have found all the advice they've given me to be good advice and from where I am at the moment I would say that it was not worth the money. HOWEVER, I think that is mostly due to me not putting into practice the advice they have given me - that's on me, not them. If/when I apply what they have taught me regularly my health improves and I return to full health I will consider it worth it. What I will say though, is have a look at their SecretsToRecovery programme which is (cont)
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I think, for me, I'm still stuck in certain psychological sets and patterns - the same ones which contributed to me becoming ill in the first place - possible mitochondrial malfunction (may be investigating next now I'm all my supplements), maladaptive stress response, nutrition and spending too much time in a 'stress state' which (among other things) affects the quality of sleep I have, which means my body isn't 'repairing' etc etc
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Well that's what the OHC say. Even if you are burnt out due to stress and that's where your CFS/ME has come from, it is not JUST psychological because stress and burnout has a physical reaction in your body. Taking a purely psychological approach to recovery won't work, it will have to be a complete approach - which is what the OHC advocate. It's all interlinked; physical (inc. cellular), psychology, nutrition, lifestyle etc.
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A 'cure' is always seen as some exterior thing that you take and it makes everything better but that takes away any sort of responsibility you might have toward your own recovery. Maybe recovery isn't that 'easy', maybe it is hard work and will take a long time of self-discipline and change. But you're right, there are a lot of 'programs' out there which claim to be 'cures' and I don't really like any of them. The OHC make you responsible for your own recovery with the 'tools' they provide.
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(cont.) what doctors tend to use. Medicine is often focused on one system malfunctioning, rather than a complex multi-system malfunction, which is what the most up-to-date research and theory thinks CFS/ME is. You should take a well-needed rest, too!
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Glad to hear youre doing well and improving and congrats on your uni course, can I ask if you have had a good experience of the optimum health clinic? I have thought about trying it but am wary of giving my money away to potential quacks when due to being poorly I dont have that much money to give away!
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(cont.) a lot cheaper and has a huge amount of information on it related to what they teach on their full courses. I would say see how you get on with that and if you feel you like what you see and you want a more personal approach then have a re-think about the financial side of things. Most of all though, good luck!
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The guy who started the clinic had CFS/ME, as did a lot of their practitioners (info on their site). I think a lot of it comes down to what you believe is causing you to be ill as to what will work for your recovery. If you believe that only a pill will 'cure' you then you will have to wait for a pill. If you, however, believe that you can recover (I believe 'cure' is the wrong word) from it by various methods, then that may well work for you instead.
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It is the body which heals the body and the mind and body are not separate things. Drugs and medicine don't heal anything, they just help the body heal itself. They can help kill stuff so that the immune system can work at clearing everything up, though. If CFS/ME IS caused by a virus, it would be a gold-mine if it could be found because then a pill can be developed and money can be made from it. I'll send you a message with some information you might like to read related to research.
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They may well be covering their bases. They still don't 100% know what the 'cause' of ME/CFS is - look at the whole XMRV stuff - and if they take blood from someone who has had ME and give it to someone who then gets ill, they are liable. Better to be safe than sorry. You'd have to ask them as I don't know.
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To clarify and rephrase...it's not worth anything if you don't put it into practice, regardless of how much it costs.
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Hi, thanks for the comment. I am indeed very lucky, especially when it comes to having an organisation such as the Open University available to me. I missed out on college and university due to my ill health and it is great to have the opportunity to further my education even though I am mostly housebound.
