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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. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I am at the same point myself. I cannot blame the medical profession because they mostly blew me off. "You cannot still be sick because your temperature and white cell count are low". (note: low, not normal) There is no such thing thing as a chronic viral infection". (Wonderful! That means there is no such thing as AIDS or shingles.)

    When I first became ill and had no idea what I had, I suspected that I was never going to recover. When I heard that researchers had figured out that CFS often began with a viral infection, I thought it likely that I had CFS. My symptoms were very like CFS other than the unknown cause. I knew that my ill health started with a nasty virus and even nastier antibiotic rebound infection. I also thought that since the cause was known a cure would soon follow. No, that wasn't particularly good logic on my part, but one likes to hope.

    I have wondered before if some of the people who recover 'only' 90% are really 100% recovered for their age, but are not taking the passing years into account.
  2. Mette (PhD student UK)

    Mette (PhD student UK)

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    It was perhaps a rather provocative way of writing, and I surely did not mean to be insensitive. I cannot personally relate to what it is like living with ME/CFS and the sense of loss you are experiencing, but I know about some of the struggles since a close family member of mine lives with fibromyalgia.

    But to answer your question, what I meant by future in this sentence was this strong focus on prevention, prediction and anticipation that I see referred to a lot in the literature on biomedicine, and generally how the media present the promises of genomics and biomedicine. And I wondered about its relation to this sense of going back to what used to be (that I’ve seen some refer to), and here the word ‘regaining’ reflects this going back. When I referred to the future, present and past, I do not view them as separate or distinct, but I am interested in the interplay between what we hope for in the future, how we live life now, and how we remember and perhaps long for a past. I am emphasising the word interplay, as ideas about the future, present and past may overlap, e.g. hoping for a better future and longing for a past could be the same thing.
    I know not everyone share the same sense of returning to a former self, and as you write, one might use one’s sense of normal functioning to determine when one is well, which is what I do when I am sick. I agree with Little Bluestem that it is difficult to compare short term illness with long term illness, and that my own experiences of short term illness is not enough to help me understand what it is like living with long term illness. That is why I very much appreciate your comments and that I can observe the conversations here at PR.
    And again, if any of you do not wish for me to include your comments and reflections in the study, please do email me, and I’ll not include those.
  3. Mette (PhD student UK)

    Mette (PhD student UK)

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    Thanks for your comments Patrick (and thanks to all of you - highly appreciate it!)


    About the reference to the past, I’ve seen people refer to this, and I wanted to hear your thoughts on this, also to validate my observations. But as others point, referring to one’s former self is not the dominate mode here at PR, but still something some people find helpful. I am less interested in getting one view of how it is like living with ME/CFS because there is no one way – there are multiple ways, and I am very much concerned about reflecting this multiplicity in my writing. I very much value and appreciate your comments, and that is why I wanted to start this conversation because you are the experts.

    I don’t see referring to the past as a fault, not at all. Rather I want to complicate the discussions in biomedical and sociological literature on prevention and prediction, and instead shift the attention to the practical frameworks of living with a condition like ME/CFS, for example. And I agree with you that it is nearly impossible to speak about becoming healthy without reference to the past, and I appreciate your thoughts on the use of the re-prefix.
    I wonder what this use of the words re-gain, re-cover etc. does in terms of one’s perspective for the future? I am thinking that in some ways it comes with a promise, a hope and something to strive for, as you mention. Does it do something else? Perhaps it comes with false hope? I’m not sure and I don’t mean to be insensitive here, but I am trying to understand how these ideas of what we hope for and how we live come together and/or work in tension.

    Glad to hear you're finding my thesis topic interesting, and the summery is quite short so yes, it can be difficult to fully understand. I am very happy to share my thesis paper with you (that is the least I can do). I am half-way through my studies now, so if everything works out, I am planning to finish in the summer 2014. But as soon as I have my chapters ready, I am happy to share them with you.
  4. ukxmrv

    ukxmrv Senior Member

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    What do you do Mette, when you are sick? How do you measure and judge your own recover from say, a bout of the flu? Have you ever had an illness that you have failed to recover from or an accident or any life event.

    I would personally find this topic more "interesting" if you were to participate in it more fully. Also my feeling is that you would reach a better understanding that would genunely benefit your work. The topic you are raising isn't challenging for me at all. I've been through them pretty well. It's about feeling safe and listened to though.

    It's making me wonder that maybe we need guidelines for researchers who come here wanting things from us.
    Helen and golden like this.
  5. Mette (PhD student UK)

    Mette (PhD student UK)

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    Thank you for your comments and questions, ukxmrv. I understand your concerns about the presence of a researcher at the forum, and the issues you rise about feeling safe and listened to. I surely do not want you to feel unsafe about my presence and that is also one of the reasons why I am sharing my thoughts and observations and why I hope that you will comment and voice your opinions on the matters I raise and in general about how you make sense of genetic data. In the position of a researcher, I hope to be able to shed light on and complicate the picture of a life of a chronic illness, specifically in relation to the understanding of one’s body through encounters with science and technology.
    I do not pretend to know what it is like living with ME/CFS – that is why I ask all these questions. I’ve never had an illness or an accident that I’ve failed to recover from and therefore I cannot relate to what you are going through. Does that exclude me from being able to conduct this research? I don’t necessarily think so. But your concerns have made me reflect more on what kinds of questions I, as a researcher and “outsider”, can ask. Are there questions or topics I cannot engage in because I never had an illness or accident that I failed to recover from? Are there questions or topics I cannot engage in because I am a researcher?

    To your question of what I do when I am sick. I’ve thought about this for a few days, and the answer to your question can be said in a short sentence: I rest – that is, I stay at home doing minimal activities. And I measure my recovery in terms of what I can do.

    Again, I am not here to fault anyone, not at all – I am here to understand how encounters with science and technology affect individuals, both in good and bad ways.
  6. ukxmrv

    ukxmrv Senior Member

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    Thanks Mette,

    and when you meaure your recovery in terms of things that you can do how would you do this?

    (and when would you know when you had recovered (i.e. what would you be comparing it to))

    Bearing in mind your earlier comment about comparing to the past in reference to some of the CFS scales. Just asking as I think we can all learn something from this exchange.


    p.s. my personal feeling is that I am happy for researchers and academics to post here in any topic but with the proviso that they are here to listen and participate with patients. So that would preclude researchers who want to come here to lecture us (the lob and run technique) or to use the groups to gather information that could be used against us without our knowledge. Looking back historically there have been cases of researchers lurking on the groups. It's up to the people who actually run this group to make a decision though.
    golden likes this.
  7. Mette (PhD student UK)

    Mette (PhD student UK)

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    Hi ukxrmv,

    So, I measure my recovery in terms of how I feel measured against what I sense as normal for me. But generally, I don’t think about this much when I’m sick – I just want to get better. But to give you an example: Last time I had the flu, when I felt like I could go for a run without it affecting my performance considerably, I knew I was back to what it normal for me.

    I totally understand your concern about researchers coming onto the forum and lurking and using info against members. I’m def not here to lecture anyone or use info against you – I’m here to learn from you through observations and conversations.
    ukxmrv and golden like this.
  8. Mette (PhD student UK)

    Mette (PhD student UK)

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    Thank you Mark. I can only imagine your struggles and frustrations.
    I appreciate your point about what’s normal – and especially as you write when it comes to an illness such as ME/CFS that fluctuates. There perhaps is no normal, but only what is in a given moment. You mentioned that some symptoms have remained unchanged and to cope with these, you avoid certain situations. Would you mind giving an example of such a situation and what you do (or avoid)?
    Mette
  9. Mette (PhD student UK)

    Mette (PhD student UK)

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    Thanks Heapreal. To follow up on your last point about acceptance and PR, could you maybe explain a bit more what you mean by not fully accepting it (chronic illness?) as a reason to come onto PR?
  10. Ember

    Ember Senior Member

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    In other words, you felt that you had restored what used to be and were functioning at 100% of your former self....
    Beyond likes this.
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Not Heaps! but will throw in a comment. People join PR to get information, to share information and for personal support for a life that very few who don't have this or a similar illness can understand. So even though we may accept our condition to varying degrees (not many will fully accept a condition that is regarded by most physicians as either non-existent or incurable), we are looking for a community where we are "normal."

    So even if we have more or less accepted our condition within ourselves, we have not accepted the response to our illness that we get from the "normal" world.

    Sushi
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  12. Mark

    Mark Acting CEO

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    Throughout my illness I've had strong 'itching' and 'burning' reactions when I'm in contact with various fabrics, including nearly all clothing, bedding and soft furnishing. It has been very hard to find anything that doesn't set me off and I still sleep on a leather sofa, wear only cotton (and only a small subset of the clothes I buy are wearable). I also have IBS like symptoms when I eat certain foods (lots of thing but wheat/gluten, soya and eggs are particularly bad). Perfumes also give me headaches. Although I have all of that largely under control now through avoidance of all those things, and my other symptoms in general aren't nearly as bad as they were 10 years ago, whenever I do come into contact with those things the reaction is just the same as it always has been. I still start itching again if I put the wrong shirt on or something like that, and I start to deteriorate from there, in a familiar way, if I can't eliminate the source of the problem quickly.
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    not fully accepting it because we all want to get back to our former selves and still some hope that a cure will be found. So i came to PR to find info and share info on this illness that has helped shape my treatments as i think it has helped others shape there treatments.

    ALso one day i hope to come to this site and there will be a proper thread saying 'accurate testing for cfs as well as cure' and it doesnt cost an arm and a leg and is fully recognised by health care system around the world and we are recognised as having a proper illness, not just a bunch of whinging nut cases as we are potrayed.
  14. golden

    golden Senior Member

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    Clear Light

    I am only a new member but I would like to add my tuppence. I had not considered I was being observed and researched when posting. I don't want any of my posts included in any field data Mette, I appreciate you asking, thankyou.

    I think it is a good point to have guidelines for researchers and as a suggestion to phoenix Rising I would say a good donation to the website would be one of them.

    I haven't been able to do this myself because I have been left in poverty with no benefits.
    garcia and Helen like this.
  15. Mette (PhD student UK)

    Mette (PhD student UK)

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    Thanks everyone.

    I understand the problematic with acceptance, and how you come to PR to get away from the “normal” world, as you write Sushi. A close family member of mine has also experienced these same kinds of problems with acceptance from her GP as well as others – you know, “she looks fine so what’s the problem” – a very typical reaction.

    Coming back to your work with genetic data – how often do you look at your genetic data? And how has genetic testing affected you? How has it changed your day-to-day experiences?

    Golden, thanks for your input. I will not include any of your posts in my research.
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Mette (PhD student UK)

    I didn't mean to imply that we spend time here to "get away from" the normal world--not at all. I would not want to get away from the normal world but do find that having a place where we are understood is important. Everyone needs that--wherever we find it.

    As far as genetic data, my guess would be that most have not had genetic tests--though the recent lower pricing of 23 and me may change that. Probably quite a few have had MTHFR testing and some have had Amy Yasko's genetic testing though probably these are one time tests for most.

    Also some of us have had our Vitamin D receptors tested if we are doing certain protocols. But only once. I know in my own case (and this may be fairly typical) I only get genetic tests if they are directly linked to treatment options. Some of the diagnostic tests we use involve sequencing--like for strains of Bartonella or Borrlia, gut pathogens, etc.

    P.S. Please do not use anyone's posts here in your research without their explicit permission. It is almost impossible not to interpret comments according to your own understanding and interpretation has not served us well in the past.

    Sushi
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  17. garcia

    garcia Aristocrat Extraordinaire

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    I look at my genetic data every day. Sometimes multiple times in a day. It gives me reassurance that I am genetic and that I have data. Genetic testing has meant that I no longer doubt that I am a genetic organism, made up of genetic data.
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  18. ukxmrv

    ukxmrv Senior Member

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    Hi Mette,

    So just to check that I am understanding you properly. When you are sick you check your recovery on "what is normal for you". Is that right?

    Does that mean how you performed before you were sick and that for you "normal" means being able to function as you could before the illness?

    It appears from your comment that you would start spliiting it into activities that you could previously do (like a run) and then judging it on that.

    Please let me know if I am understanding you correctly. I am enjoying this conversation and feel that we are reaching an important point.

    garcia and heapsreal like this.
  19. WillowJ

    WillowJ Senior Member

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    I think there is a sense in which ME patients are different from patients with most (not all) other diseases in that we aren't given the same kinds of accommodations as others are.

    If I had a diagnosis of heart disease or MG or maybe MS or possibly even Lupus, I'd probably have an electric wheelchair or something of that sort. I might have a few hours of in-home care. I'd have had oxygen when I needed it. I'd have gotten other disability stuff which I have access to now, much sooner.

    People sicker than me with ME would have 24-hour home nursing care and adaptive computer software. I know there are folks who need this.

    We do not have this kind of support (the vast majority of us).

    If we had this kind of support we would probably have a different perspective about our illness.

    So even though cognitively we know it's not likely, we may expect to get better because we have to. We cannot continue on like we are indefinitely.

    I do not want to be quoted in any paper, and I agree with Sushi that explicit permission should be sought rather than assuming permission is implied by people answering on this thread.

    Answers on a public forum may not be the best way to do research anyway, because the quotes can be searched and the patient's identity/ online identity is easily found. It's my understanding that in studies, the patients' data is supposed to be secure. However coming here is a good way to build your own understanding. Good on you for this.
    garcia likes this.
  20. Mette (PhD student UK)

    Mette (PhD student UK)

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    Hi everyone,
    It’s been a week’s time since my last post - I’ve been moving house during the Easter break and been away for a few days. But thanks for your comments.

    To Sushi, of course you do not want to “get away”, but seek support and understanding which, as you write, everyone needs. If I may ask a question: Which genetic tests have you done? And have the results changed your treatment plan?

    About my research ethics, I understand your concerns, and the points you raise Sushi and WillowJ.
    I do not wish to intrude on anyone’s privacy. I am here to get a better understanding of how it’s like living with ME and how you make sense of your genetic data and therefore, taking your concerns into consideration, in my writing, I will only allude to your comments and ask permission if I wish to quote. And I always use pseudonyms in my work.
    I’ve noted, WillowJ, not to include your posts in my research.

    To ukxmrv,
    I check against what is normal for me within a given time frame. So, yes my recovery depends on what is normal for me. Because what’s normal can change – it’s not so fixed in my view (or at least, it shouldn’t be). It all depends on the situation and the effects of the experience, but in general (e.g. when recovering from a flu) I use “my normal” to determine when I am well which links to what I can do. I do not necessarily link what’s normal to me with my pre-illness state – I just think about getting better.
    In general, I think we need to critically reflect on the idea of “the normal”. However even though I think we need to be more flexible about what is normal, I also think in cases with chronic illness we should be careful not to normalize disability. I was recently pointed to this WSJ article (‘the puzzle of chronic fatigue') which brings forth this problem of normalizing disability. I find Dr. Bell’s work on recovery and how patients adapt (and thereby normalise the illness and perhaps mistake it with recovery) very interesting. In chronic illnesses, trivialising the “new normal” can be problematic – but it is perhaps also a coping mechanism.
    If I can ask: How do you make sense of what’s normal to you? Is there “a normal”?

    To Garcia,
    What genetic testing have you done? 23andme?

    Thanks,
    Mette

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