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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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A few questions from the PhD student..

Discussion in 'Genetic Testing and SNPs' started by Mette (PhD student UK), Mar 11, 2013.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Mette (PhD student UK)

    Re: genetic tests, I have only done MTHFR SNPs (don't have the 2 common ones) and gut tests that use DNA. I also had the genetics of the Vit D receptors tested and I will have DNA sequencing if my PCR for Borrelia or Bartonella is positive. I have only pursued genetic tests that would lead to a specific treatment.

    I think it would be good to also ask permission even if you only allude to a comment from the forum. I also would not want my posts even referred to. Anonymity and confidentiality is very important here.

    Although, for a variety of reasons, this forum needs to be open access, I think many members would be uncomfortable with their posts being used for research without explicit, individual permission.

    Thanks!
    Sushi
     
  2. adreno

    adreno 3% neanderthal

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    Survival.
     
  3. ukxmrv

    ukxmrv Senior Member

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    Hi Mette,

    Thanks for the thoughtful reply. It sounds as if you would judge your recovery from the flu on what was normal for you before you were sick and then on the tasks that you need /want to do in everyday life.

    It would strike you as unusual if you ever did have the flu and then discovered that you could not perform the tasks that you could before and could not perform the tasks that you needed in every day life. Especially if you were unable to communicate as before, use the phone or write a letter. People would not understand why communication had stopped as the idea that someone could have the flu and then drop off the face of the world isn't known. Society knows death, stable disability but not chronic severe sickness.

    The pressure on judging myself on being "normal" didn't come from inside. I was far too sick and often unconscious to be able to think in these terms. My brain was badly operating so it was from other people that the "normal" started with.

    As I was a young student at University I imagine that these may strike some chords with you.

    1. My doctor said "it is strange that you are so sick with this virus and I will write you a sick note until you are back to NORMAL"
    2. My Tutors said "we understand that you are too sick to come to class. we'll see you again when you are NORMAL".
    3. My flatmates said "we'll just carry on until you are NORMAL and can join in"
    4. My friends said "would love to see you when you are back to NORMAL"
    5. My family said "come and stay here until you are NORMAL"

    This was the first phase, an expectation of a short, viral illness that would eventually lift and leave me to pick up my life as before. Because the viral illness was so severe there was no question of fitting in. It was a world of 4 walls only.

    After time it became

    1. The doctor says "I'll have to refer you to a consultant as I do not understand why you are not back to NORMAL"
    2. My tutors say "when will you be able to come to class as NORMAL, you may need to try again next yea if you can't"
    3. My flatmates "We'll have to find someone else for your room but let us know when you are back to NORMAL"
    4. My friends say "we miss you, when will you be back to NORMAL"
    5. My family say "why aren't you back to NORMAL, no on has the flu for this long"

    Society begins to judge you on their expectation of "Normal"

    1. Benefits staff "how long does your doctor say before you are back to NORMAL"
    2. Doctor 1 (GP) says "all your tests are NORMAL"
    3. Consultant says "you are not having a NORMAL reaction to the virus"
    4. Benefits doctor says "What can you do compared to NORMAL"
    5. ME doctor says "before you had the Flu what did you do NORMALLY"
    6. Quack doctor says "buy my method, do this exercise, come to CBT and you can return to NORMAL"
    7. Benefits Tribunal says "well you look NORMAL to us"

    So we are left constantly trying to judge what someone means by "normal". Do they mean normal for a person of my age and gender, do they mean before I was sick and disabled, do they mean at my current level of disability.

    It can take a long time until one's current level of functioning becomes "Normal" because the disease fluctuates. So instead of a stable level of health and mobility there is uncertainty from one day to the next. This is one reason that having a chronic disease can be different to a disability.

    Also the healthcare and benefits system is set up around "recovery" so we learn to deal with systems that don't work in the same level of reality. We are encouraged to believe that being sick and disabled and unable to work is a temporary stage and that one day we will be well again. Hence the modern "newspeak" of Departments of Work and Pensions.

    Over time what happens that is I live with multiple understandings of the word "normal" depending on who I am talking to. I am also capable of having a personal understanding of "normal" that contains all of these and contrast them in my mind.

    I was at one of the talks that Dr Bell gave about his "recovered" CFS patients. After time disabled, sick people can forget what "normal" was. They are "back to normal" in that they can work albeit part time or study and maybe have a social life but they are not "recovered to their previous level". I have a family member in exactly that state so we have been able to talk that through. She describes an attitude in society that puts pressure on people to return to "normal " after an illness and how hard it is for people disabled in some ways to fight this, especially if it is invisible. One would need to sit down with this group and work out what the words mean in their different contexts to them
     
    Beyond, garcia, WillowJ and 7 others like this.
  4. adreno

    adreno 3% neanderthal

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    That would certainly be nice of Mette, if she were to do that. But...once you post something on PR you have no legal rights to it any more. Besides "Sushi" isn't a legal entity.
     
  5. brenda

    brenda Senior Member

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    Hello Mette

    A lot of folk here were living normal lives and then became chronically ill with whatever condition/s they have. I was never able to be normal, although of course I did not know this in my childhood. I gained a reputation for being a hypochondriac in my family due to always feeling too sick and tired to do what others did easily and I obviously suffered from ME since early childhood and I guess self doubt has sunk deep within me so getting my 23andme results and finding out that my genes let me down when mercury poisoning switched off the ones needed for methylation and detoxification, has been life changing. It explains the problems I have had.

    I am organising the protocol I need for improvement using Dr Yasko and Freddd for guidance and am waiting for my sulphur strips to show me just how much my CBS++ mutation is affecting me and am very grateful that there is help and guidance for us who cannot find medical help for this.

    Even though I have spent a lot of money on private testing, private doctors, naturapaths and many supplements because the NHS has failed me starting from the doctor who prescribed the medication containing mercury I was given at 6 months old, despite it being known to be poisonous, the money I have spent at 23andme which came to about £100 with postage, has been the best purchase of all and has given me the means to help myself at last and hopefully not too late. It has also given me something to use for support with doctors as I have 18 genetic defects. Not that they will understand the implications however. You can quote me.
     
    PennyIA and golden like this.
  6. Mark

    Mark Acting CEO

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    Just to clarify this point, actually you retain copyright on what you post here, but you also grant a licence to PR to use the content, and you are also putting it in the public domain in that it can be viewed and indexed on the internet (unless you are posting on one of the members-only forums). As explained in the forum rules:

    http://forums.phoenixrising.me/index.php?wiki/forum-rules-explained/
     
    Little Bluestem likes this.
  7. golden

    golden Senior Member

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    I am currently researching this as I am sufficiently irritated by the underlying principle.

    http://www.worldlawdirect.com/forum...enerated-forum-posts-copyright-protected.html

    The intention of my posting is on a personal level. I have been USED and ABUSED by my countries so called health practices.
    In the most deplorable, dishonorable, diabolical ways.

    I post to share with others what I have found useful and what I think may help someone else, even if its just one other person.

    I also take advice from other posters, taking full responsibility for my own decisions.

    If I want to opt of of a 'research' project - one that I am not even being personally paid for, for any contributions that are

    being used, whether directly or alluded to, I feel that That is an entirely reasonable request which should also be a 'right'.

    I think legal issues on personal copy rightly need clarifying but also Phoenix Rising possibly has copyright on which case - I would hope for protection fRom Phoenix Rising for members who have M.E. first and foremost.
     
  8. golden

    golden Senior Member

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    As I have posted I see Mark has too...

    just going to read that now :)
     
  9. Mark

    Mark Acting CEO

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    I hope my post clarifies the situation as far as PR is concerned, but if you have further questions about this it's probably best to post them in the Moderation forum as that's the place for clarifying issues about the rules, terms and conditions, and I wouldn't want this thread to go further off-topic. I'll add a couple of other comments though...

    Although PR (like most forums) reserves licenced rights to what's posted here (meaning that the poster doesn't have the right to demand that we delete their posts), we do edit or remove posts on the poster's request when there's a good reason to do so (like protection of privacy). Our main reason for needing the licence over what's posted is to be able to preserve the integrity of discussion threads.

    Regarding the quoting of what's posted on PR by others, the content is the property of both the poster and of PR. The poster holds the copyright but grants PR the licence to use it as described in the rules. This means that PR and the poster both have rights to prevent the content being used elsewhere without permission. As I understand it, this means that posts here can't be used elsewhere for commercial purposes without express permission. However, copyright law is evolving and it is complex, and as I understand it the position varies as to whether others may quote extracts from content like this for non-commercial purposes. Members would be wise to bear in mind that once they post here, the content is indexed by google, and it may be quoted or appear elsewhere on the internet - in reality there's little anyone can do to prevent that, and legal action in that situation, by the individual or PR, may well not be feasible in practice.
     
    Kina likes this.
  10. Esther12

    Esther12 Senior Member

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    The discussion over 'normal' is of particular relevance to CFS patients following the way in which results from the PaCE trials have been spun.

    There's a clear and simple explanation of some of this with regards to the SF36-F scale here:

    As part of this scale, one rates whether one's ability to perform certain activities is normally i) limited a lot, ii) limited a little or iii) not limited at all.

    i = 0 points. ii = 5. iii = 10.

    The 10 activities assessed as part of the sf-36 are:

    1.Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports.
    2.Moderate activities, such as moving a table, pushing a vacuum cleaner, bowling or playing golf.
    3.Lifting or carrying groceries.
    4.Climbing several flights of stairs.
    5.Climbing one flight of stairs.
    6.Bending, kneeling or stooping.
    7.Walking more than a mile.
    8.Walking several blocks.
    9.Walking one block.
    10.Bathing or dressing yourself.

    In the PACE trial's protocol, a patient needed to be have a score of 85 or over before they could be classed as recovered. A score of 65 or under was used as part of the inclusion criteria to indicate abnormal disability. At the end of the trial, it was the researchers involved were claiming that patients with a score of just 60 had recovered.

    When results are being manipulated in this way, and being used to make misleading claims about the efficacy of treatments and the likelihood of recovery, it is important for patients to insist upon more demanding criteria for "back to normal". There will always be quacks trying to make money from curing patients, while really leaving them sick and disabled.

    The justification of a score of 60 being 'normal' was that it was the mean - 1 sd of the population scores. The researchers initially claimed this was for a working age population, although they have now (obtusely) recognised that this was not the case, and in fact 28% of the population was aged over 65. It would be possible for George Osborne to claim that he had got the economy back to normal... so long as he was using the mean- 1 sd of a set of economies which included those who were much less wealthy than Britain had been - I can't imagine many journalists letting him get away with it though.

    There is a serious problem with a substantial portion of medical staff believing that patients given a label of CFS deserve to be treated with disdain, and that it is acceptable to pragmatically manage the psychosocial aspects of their illness through the promotion of 'positive' narratives and encouraging a sense of control over symptoms, and of the likelihood of recovery, in a way which is not supported by the evidence. One worry I have about Mette (PhD student UK) 's work here is that, if she is just studying the narratives around the use of 23 and ME genetic testing, and this testing is itself quackery, then this could be used to justify further manipulation and disdain being heaped upon patients without their consent (although I am certainly not saying that this is her intent). If it's decided that patients like using 23 and ME to give themselves a sense of control and understanding that is founded on myth, then some doctors could see that as justifying their own myth building, in order to guide the cognitions of patients in a more 'functional' manner.

    I really don't know much about genetic testing, or about Mette's work, but as I've read a couple of threads, that has been one concern.
     
    PhoenixDown likes this.
  11. PhoenixDown

    PhoenixDown Senior Member

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    (Skip to about 2 minutes)


    There was once a great king who spread the word through out his kingdom, that he needed the best thinkers, alchemists, and religious zealots, in an effort to come up with a new weapon to destroy a terrifying enemy that had hounded him for years.

    Once he gathered all his kingdom's finest men & women, they were anxious to know who this enemy was, however when they asked, the king simply replied, time.

    Is time not the greatest enemy of us all?
     
  12. adreno

    adreno 3% neanderthal

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    Time destroys all things. Time also creates all things.
     
  13. Mette (PhD student UK)

    Mette (PhD student UK)

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    Thanks Sushi,
    In relation to pursuing gene tests only leading to a specific treatment,
    how do you work this out? With help from your doctor, PR and/or on your own?

    I’ve noted not to include comments from you in my research.
    Overall, it’s not my intention to extensively quote from PR, but in some cases, it benefits the argument to include the quote, and in those cases, I will ask permission from the poster.
     
  14. Mette (PhD student UK)

    Mette (PhD student UK)

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    Could you perhaps elaborate on what it means to you? Thanks.
     
  15. Mette (PhD student UK)

    Mette (PhD student UK)

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    Thanks ukxmrv,


    Yes, this point is important. And because chronic illness fluctuates and is multiple and diverse, it shouldn’t stop us from understanding life with chronic illness.


    Yes, this reminds me of the idea of the ‘survival of the fitting’, which on one level can be considered a bad thing because who wants to constantly negotiate and juggle this ‘fitting in’ in relation to other people’s expectations (which as I read it, is exactly what you are doing). But it might be necessary in the sense of trying to work out how people living with chronic illness fit into a “disease model” in order to get recognition, acceptance, treatment etc.


    RE quacks, I am curious to know more about your experiences with quacks.
     
  16. Mette (PhD student UK)

    Mette (PhD student UK)

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    Thank you Brenda for sharing your story. I am curious to know how your family and friends have responded to your test results, and what your GP says when you show her or him the 18 genetic mutations.

    Could you explain a bit more about how you organise and work out your treatment protocol? I’m curious to know about the practicalities of this. Thanks.
     
  17. adreno

    adreno 3% neanderthal

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    I would say that survival instinct (or evolutionary pressure) drives many of us. Some do not have access to financial support, and even those who do cannot expect a high quality of life. Others have family that they have to provide for.

    But besides the obvious financial issues, evolutionary pressure drives us to improve our condition. People want to make themselves and their life better. It's no different than healthy people, really. Without that motivation, we would still be living in caves.

    Also, suffering and pain is a great motivator. No one seems to value their health until they lose it. But once it's lost, it's really the only thing you want. To be well, and free of suffering and pain. To have opportunity to experience life.
     
    Beyond, roxie60 and ukxmrv like this.
  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    With the help of my doctor (he specializes in ME and keeps up with genetic and clinical research), and from reading PR and other ME/CFS sites and the articles that are referenced there.

    Sushi
     
  19. Lotus97

    Lotus97 Senior Member

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    One quick clarification about the one-size-fits-all comment. Rich revised his protocol last year (August 2012) to make it more inclusive. He still recommends starting with hydroxocobalamin and a low dose of methylfolate, but now he gives people instructions on switching to methylcobalamin and raising their methylfolate dose (if necessary)
    http://forums.phoenixrising.me/inde...ation-protocol-august-25-2012-revision.19050/
     
  20. brenda

    brenda Senior Member

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  21. Lotus97

    Lotus97 Senior Member

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    I've had a similar experience. It's been several years since I've had any friends (unless you count people I talk to online). I do live with my parents, but I spend most of the day in my room.
    Some people need to start out at lower doses. I went at least 2 months with just taking 1000 mcg of hydroxocobalamin and then slowly added folinic acid. I haven't started taking methylfolate yet.
     

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