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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. Mette (PhD student UK)

    Mette (PhD student UK)

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    Hi all,

    It’s been some time since I’ve posted on the forum, but not to say I haven’t been here at PR – in fact I have been checking in on what has been going on, and I was particularly sad to hear about Richvank (my condolences to his family and friends).

    I’ve been doing a lot of reading, thinking and starting to do a bit of writing, and when reading many of the posts and comments here at PR, I’ve been struck by the hard work many of you put into making sense of your genetic information and methylation issues – given your struggles in the first place with ME/CFS.
    The way you work with the genetic information, with the scientific literature and available tools and programs (not least Mindy’s Google spreadsheet and kday’s Genetic Genie), and also the way you support each other, I find quite extraordinary and I am amazed by your commitment and not least, your patience – an essential quality to have, it seems, when it comes to coping with ME/CFS. These processes of coping and processes of caring, I see as essential to the PR community.

    To remind you who I am (and to newcomers), I am a PhD student at Lancaster University in the UK doing research into how people make sense of their genetic data. Mark has given me permission to observe the forum, but as I mention in this post:
    http://forums.phoenixrising.me/inde...ter-university-at-phoenix-rising-forum.18946/
    - if any of you feel uncomfortable about my presence and do not want me to include your comments in my field data, please contact me.

    I have a lot of questions, and I am hoping you can help me answer some of them.

    I have a question about the way you keep track of your data, treatment and effect of treatment. It seems to be quite a big job taking on the task of figuring out a treatment protocol based on one’s 23andMe data. I was wondering whether any of you have come up with a system of keeping track of your data, both in terms of which SNPs are relevant for you and the suggested supplements to take and in terms of the effects of the treatment. I understand that Amy Yasko’s service will provide a treatment protocol, but what if you are doing the 23andMe test? There is mentioning of the heartfixer website, but do you have a specific way of going about using the site in relation to treatment protocols and also keeping track of the effect of the treatment?

    I was also hoping you would share your thoughts on some of my observations. A lot of the rhetoric on 23andMe’s website is about prevention and the future. Although the future is also important, it seems that parts of the PR community work with another kind of temporality – and here I am thinking of the past (and the present). It seems you are involved in some form of “repair” and want to restore what used to be. When talking about how you are doing, some are referring to a percentage of your former self, e.g. 80% of my former self. I think it’s important to point out this concern for the past in an age where discourses of the future, prevention and prediction take central stage. I very much welcome your thoughts on this.

    All the best,
    Mette
     
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  2. Ember

    Ember Senior Member

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    Consider the nature of the diagnosis:
     
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    True for many diagnoses...but for ME, sure we'd like to look to a better future, but first we need to be realistic. Realism means taking all measures available not to get worse--and worse is what usually happens without good treatment. Yet there is no treatment that helps the majority, and many do not have access to any doctor that even takes them seriously, let alone has a clue as to how to treat them. So if we are able to still take care of ourselves, our hope is to continue to do that and perhaps regain a bit more functionality. That is looking the situation squarely in the eye.

    Sushi
     
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  4. Mette (PhD student UK)

    Mette (PhD student UK)

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    Thanks Ember for linking to the document on the international consensus criteria. I can see how this kind of description could be useful for diagnosis and personal baseline. But I wonder whether you also experience ME this way and whether relating to the past and one’s pre-morbid activity level is only about the diagnosis?

    And thanks Sushi for your comment. I get your point about realism. It is interesting to observe this distinction between not getting worse and getting better. Perhaps also related to the differences between coping and progressing?

    I am very interested in this interplay between the future (cure/treatment), coping with the present, and going back to the past (regaining functionality).
     
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    There seems to be a few ways to rate ones function as a number, this can be hard as this illness is an up and down illness, not a steady state. I have found and use Dr lerners energy index points score, although i dont think any rating system at the moment is 100% accurate. I had to midify my scores on this index table as it didnt fit in with my situation. I rated myself before antivirals as a 3 out of 10 which is standing and walking 2-4 hours a day but i was working 2 days a week and couldnt reduce my shift length so had to work 10 hour shifts(somehow) but when not at work i would be mostly lying in bed for less then the 4 hrs a day, also many times i would have to call in sick as well. With all this i guessedamated i was a 3 out of 10 function. http://www.treatmentcenterforcfs.com/energy_index_score/index.html

    Dr bell has his own fatigue scale which seems good but i think ones score would vary between these 2 scales??

    I also think after several years our perception of our severity change as we apply coping mechanisms consciously and unconsciously. One can say they have improved and are better but further questioning and u can find out the illness hasnt improved but coping mechanisms have eg thye will still get daily headaches and require resting several times a day, most days of the week have muscle pains and pop some type of pain medication and move on. cognitive issues are still bad but the patient has post it reminders everywhere and timers set so they remember that they are cooking something etc. So all these coping strategies can give the illusion of the actual illness improving but it isnt , its just the coping stratagies have. Dr bell did a 25 year follow up on patients he treated during an ME/cfs outbreak in the 1980s which he found what i have written to be the case?? http://confessionsfromthefibrofog.blogspot.com.au/2011/04/dr-david-bell-lectures-on-chronic.html
     
  6. Sea

    Sea Senior Member

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    I think a lot of us make reference to our former selves because of the way we are catergorised by doctors and sometimes family and friends. The labels lazy, hypochondriac, obsessed with health, overemphasis on symptoms which are "normal" - all of these lead us to point out what kind of person we are, what we were able to achieve before we got sick and how much we long to be able to do those things again.

    If we weren't so often accused of secondary gain and wanting to be ill we wouldn't feel the need to make so many before and after comparisons. It is different to what happens in other understood illnesses and disabilities where there can be much more focus on adapting to a new way of life.

    Also the unpredictability and fluctuations of this illness mean that our only stable reference point is what we were before illness changed our lives
     
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  7. Plum

    Plum Senior Member

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    [quote="Mette (PhD student UK), Although the future is also important, it seems that parts of the PR community work with another kind of temporality – and here I am thinking of the past (and the present). It seems you are involved in some form of “repair” and want to restore what used to be. When talking about how you are doing, some are referring to a percentage of your former self, e.g. 80% of my former self. I think it’s important to point out this concern for the past in an age where discourses of the future, prevention and prediction take central stage. I very much welcome your thoughts on this.

    [/quote]

    I have been pondering what you said in this bit of your post for a day now and I think it is very interesting. I think it is important (for me anyway) to live in the now and be happy with what I do have. I don't actually know what functioning at 100% is like as I've been ill since I was 14. I would be happy with my life if I could reach a point of consistency without having any more crashes taking me back down to 10% of functioning. But your words made me think that I do spend a lot of time missing what I used to have and longing for a 'normal' life. And as long as I'm doing that I am missing out on the good moments I have right here, right now. So thank you for your post :)
     
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  8. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    How does cure/treatment differ from regaining functionality? My father, who does not have ME, has been in the hospital. He has a physical therapist, an occupational therapist, and a speech therapist all working with him to regain various functionality. He is also on a variety of medications who basic aim is to regain/normalize functionality - blood pressure, blood flow, cholesterol level, bladder function, eye pressure, etc. It seems to me that a lot of medicine is about regaining and/or maintaining functionality of some sort.
     
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  9. ukxmrv

    ukxmrv Senior Member

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    Mette,

    I am genuinely confused by what you mean here

    "I am very interested in this interplay between the future (cure/treatment), coping with the present, and going back to the past (regaining functionality). "

    What do you see as the difference between the past and the future by this use of words?

    Maybe it would help if you explained a heath problem that you had experienced and how these concepts shaped your thinking as above so we can understand the question a little better.
     
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  10. Hip

    Hip Senior Member

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    Hi Mette

    I don't think you can read too much into these remarks made by ME/CFS patients about being, for example, 80% of one's former self.

    These percentage measurements of health used here sort of tacitly refer to illness-measuring scales — such as the Karnofsky Scale, which goes from 10% to 100%, in steps of 10; and the Energy Index Point Score (developed by Dr Martin Lerner), which is goes from 0 to 10 — both of which measure you health in terms of being completely bedridden at the bottom of the scale, and completely healthy at the top of the scale.

    ME/CFS is a condition of variable severity, and some ME/CFS patients can be fit enough to go to work, albeit with some struggle, whereas at the other end of the scale, other ME/CFS patients may be so ill that they are unable to get out of bed for more than a few minutes a day, usually just to go to the bathroom. And you will find all the shades of gray in between these two extremes.

    Patients can often change where they are located on these health scales, to some degree anyway. Frequently ME/CFS patients can gain some useful improvements in their health state by the use of supplements and drugs; on the other hand, patients may get worse, because of some further health insults or complications. So it helps to have some kind of scale to measure these gains or loses in health, even if it is just the informal, approximate notion of "80% of my old self".

    Researchers and doctors also use these scales. For example, Dr De Meirleir reports that many of his ME/CFS patients experience at least a 20 point increase on the Karnofsky scale as a consequence of taking the antiviral drug Nexavir. Thus you can measure the efficacy of a treatment for ME/CFS in terms of the degree of improvement it brings on the Karnofsky scale.

    I hope this is of some help.
     
  11. Hip

    Hip Senior Member

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    As you may know from reading Amy Yasko's methylation-deficit theories of autism, and Rich Van Konynenburg's adaptation of these methylation-deficit theories to ME/CFS, one use of the 23andMe data relates to finding out if you have any gene variants that make it harder for you to methylate.

    Rich Van Konynenburg's methylation protocol is a one-size-fits-all protocol, designed to boost methylation in ME/CFS patients by means of certain supplements.

    However, as I understand it, certain gene defects may create blockages in the methylation process, and by locating these blockages, and adapting your supplement protocol to overcome the blockages, you may better boost your methylation.

    In order to locate these gene defects that relate to the methylation process, what we do here is download the raw data file of our 23andMe gene results (available here on the 23andme website), and then upload this raw data file to the Genetic Genie website (here), and Genetic Genie then processes the raw data and provides nicely formatted table containing an analysis of all the normal and defective genes that relate to the methylation protocol (that's my understanding of it, anyway).

    I have just posted my own Genetic Genie results here, in case you want to see what they look like.

    In terms of interpreting the Genetic Genie results, I am trying to read up about the effects of each of these genes (there is some info on about this on the heartfixer site), but it takes a long time to get to grips with it, as it is very complex, so I am hoping that some of the experts on this site will kindly help me interpret the Genetic Genie results.
     
  12. Mette (PhD student UK)

    Mette (PhD student UK)

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    Thank you all for your comments.

    Heapsreal, reading the Energy Index point score it is interesting to note that recovery starts with point 6... Also one might question what normal is. If 9 is full sedentary workweek, no naps, some social activity plus exercise approx. ½ to 2/3 normal without excessive fatigue, and awakens next morning refreshed, is "normal" then full recovery?
    I will be interested to hear more about how the rating scale helps you, Heapsreal? Is it as Sea refers to a way of justifying to others your state of illness? Or as Hip mentions an informal way of measuring degree of improvement? Or something else?

    About coping strategies, as Dr. Bell found, it is perhaps more complex in the sense, as he writes, that “it is difficult to determine who is doing well by coping with the illness and who is actually recovered”. What does it mean to be recovered?
    This also relates to Little Bluestem and ukxmrv’s comments in regard to what makes regaining functionality different to treatment, and here I am not saying that treatment/cure and regaining functionality are two separate things – that is why I am using the word ‘interplay’. But I should have been more careful with the comparison between ‘going back to the past’ and ‘regaining functionality’, as regaining functionality is more about coping with the present and a form of treatment. What I meant with the past is this sense of looking back and talk about a pre-illness state, which I’ve noticed among some here at PR, but as many of you comment, it perhaps comes out of the diagnosis and the struggles around ME/CFS (I personally know a bit about it as a family member of mine has fibromyalgia).
    Following from these thoughts, a question would be: What do you hope for?
     
  13. Mette (PhD student UK)

    Mette (PhD student UK)

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    In terms of interpreting the Genetic Genie results, I am trying to read up about the effects of each of these genes (there is some info on about this on the heartfixer site), but it takes a long time to get to grips with it, as it is very complex, so I am hoping that some of the experts on this site will kindly help me interpret the Genetic Genie results.[/quote]

    Thanks for this Hip. As this stuff can be rather difficult to get to grips with, as you write, I am wondering about what keeps you motivated? And in general, how do you feel about this reading, studying, getting to grisp with it all? Does it ever become too much? If so, when?
     
  14. Patrick*

    Patrick* Formerly PWCalvin

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    Hi Mette,

    I think you've made an artificial distinction, as pointed out by others above. I believe that most of us don't distinguish between past health and future potential for health. I, for instance, simply know that I have fallen out of health and desire to gain it back...it's that simple.

    I would dispute the premise that the dominate mode (or even a common mode) on PR is to refer to the past. As I look around PR, I don't see many posters speaking specifically in terms of percentages "of their former self." Are you sure that's not your subjective interpretation of people's general references to percentages?

    I sometimes use percentages as a way to measure my progress, but I don't specifically mean a percentage of my former self. While that certainly factors into it, I tend to use percentages more generally, where 100% is inclusive of 1) my full potential, 2) what appears to be normal for other people of my age, and 3) my pre-morbid level of health. Frankly, all three are basically the same to me and I rarely feel the need to distinguish them in my mind. I suspect that others here are the same.

    At the same time, you can't fault people for using the past as a reference point. When you think about it from an epistomological standpoint, there only a few ways in which we can gauge our health and progress:

    1) Past Experience. We know that we once felt better and now, by comparison, we feel worse.
    2) Comparison to others of the same age.
    3) Medical test results, such as blood tests.

    Of the three, wouldn't you agree that the first is superior in most ways? Comparison to others introduces all sorts of variables that cannot be controlled, and we don't ever truly know how another feels (although it's more obvious when someone is bed bound and another is not). Medical tests can be prohibitively expensive, and many doctors simply refuse to order them. When tests are ordered, they are rarely ordered in a serial manner, preventing us from gauging progress over time. Thus, how we felt in the past is the best way of setting a goal for the future and gauging progress.

    I don't think you can read too much into the use of the word "repair", as you have quoted above. This doesn't necessarily signify a desire to return to the past. More often, I think "repair" is used here because it is used so often in medical literature and books. Take Dr. Yasko's book, which you've referenced above: the word "repair" and synonyms are used throughout the book, including an entire chapter called "Repairing and Building DNA." Another chapter deals with repairing the Myelin coating on nerves. It's only natural that we are going to pick up the terminology used in the literature we read.

    The fact that 23andMe may focus on future prevention is merely a reflection of their business model. They want to appeal to the widest possible audience of potential consumers, which is healthy people. But make no mistake, they also cater to those who are ill and trying to regain health. Once a client receives their results, they can log into their online account and the 23andMe website will guide the client through each of their genetic defects. Within each description of a genetic defect is a list of suggestions for how to treat it. Besides, it's unrealistic for us to have the same health goals as fully healthy people. A fully healthy person may have the luxury to focus on prevention of future diseases, but for those with ME/CFS it's only logical that our present condition would take priority. These are basic Heirarchy of Needs decisions.

    Finally, I would note that it's nearly impossible to speak about becoming healthy again without reference to the past. I would challenge anyone to find words that don't refer to past states. In the English language, the operative words of healing tend to use the re- prefix: regain, repair, return, resume, recover, etc. The only exception I can think of is heal, but that word tends to connote wounds, not illness. We're no more looking to the past than you are when you do your research. It's simply not fair to parse our words to such a fine degree.

    Full health for an average person of my age.

    I'm realistic about it and understand that this may not be likely, but that's what I hope and strive for.

    Best of luck to you in your research.

    [EDIT: I've now had a chance to review a summary of your thesis, which I found here. It sounds very interesting, although I'm not sure I fully understand it. When do you plan to finish your thesis paper, and could we see a copy when it's finished?]
     
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  15. Hip

    Hip Senior Member

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    That is a very good question, Mette, as is your previous question of "What do you hope for?".

    A good way to help understand the situation that people with ME/CFS face is to metaphorically consider ME/CFS patients as kind of prisoners of war. We nearly all had normal lives of full freedom once, but then we were captured and incarcerated within a very restrictive illness.

    Like most prisoners, what ME/CFS patients hope for is freedom once again. Within the confines of this illness, what many ME/CFS patients think about is their lives before they were imprisoned by the limitations of this disease; and even more, they think about the idea of breaking out of prison, breaking the bonds of this disease, and returning back to freedom, returning back to a full life.

    If you ever watched any of those old World War II prisoner of war films, the "Escape from Colditz" type of thing, you notice that the intent of most prisoners of war was to escape.

    This intent was strong not only because escaping from a WW2 prison was logical and desired, but also it becomes clear in these films that thinking about escape, and spending countless hours hatching intricate plans and means to escape, raised the morale and spirit of the prisoners, gave them hope, direction and meaning in their otherwise very compromised existence.

    It seems to me that ME/CFS patients are like prisoner of war. If a disease like ME/CFS befalls you — a disease in which only around 1 in 20 people ever recover from — then what gives you hope and meaning in your life is the idea that you will be one on the lucky 5% that do recover.

    When you ask ME/CFS patients, "What keeps you motivated? Does it ever become too much?", this is like asking a prisoner, who is slowing digging a tunnel out of his cell, inch by inch, using only say a tablespoon, whether his digging ever becomes too much. It probably doesn't become too much for the prisoner, because he has so much time on his hands anyway, that digging actually helps his state of mind, as it is working towards his ultimate goal of escape.


    In addition to the above, for me personally — and this probably applies to quite a few others here — some of my educational and general interests are not so far removed from ME/CFS (I did a MSc in cognitive science, for example, and I always had a very strong interest in health and dietary supplements), so personally I do actually find studying, and trying to remedy, the cognitive dysfunctions that occur in ME/CFS reasonably interesting.
     
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  16. ukxmrv

    ukxmrv Senior Member

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    Hi Mette,

    Personally I only use the scales for 3 things

    1. Determining if a treatment is helping me or making me worse. We patients have had lots of discussions in the past on the different scales and their helpfulness in this way.

    2. If I am a subject in a research trial or test

    3. To determine my functioining for a legal matter or a disability benefit

    -------------------------------------------------------------------------------------------------

    Think back to the last time you were sick with a really bad flu or an illness.

    Was your desire to regain the functionality of last week or the last time you felt well a "desire to return to the past" or are you using your normal functioning state measure to determine what you would like to happen or to know when you are well.

    Would appreciate if you would answer this question.

    What do you do when you are sick?

    My feeling is that if you want to participate in this group it would be respectful if you answered these sorts of questions. We have not agreed to be your research subjects or agreed to any sort of contract with you that says you can fire poorly worded and maybe insensitive questions at us and ignore things that we ask you.
     
  17. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    When I had short term flues and illnesses, I did not think about "regaining the functionality of last week" or "the last time I felt well". I simply wanted to get well. I had conventional treatments to follow while doing so and had no doubt that I would. I do not think that the experience of short term illness leads to an understanding of long term illness.

    I do recall that when I was in primary school, we had to have a normal temperature for 24 hours before returning to school after being sick. That was the use of a normal functioning state measure to determine when we were well.
     
  18. Mark

    Mark Acting CEO

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    I find the issues that Mette has highlighted on this thread, about past, present and future, quite fascinating, and they are very sharp questions indeed about how one relates to loss of functionality in the experience of any chronic illness - and particularly one that may fluctuate. There are so many phases one goes through as the years go by.

    My own life was interrupted and put on hold when I was about 25, and that was the hardest part - I felt cut off in my prime. The loss of the ability to participate in the sporting activities that I loved so much, and then the inability to even walk to the shops, was so stark back then that it was a really blatant experience for me. But as the years went by I found that when I described the experience to others, a common reaction was "oh yes, that's normal, that's just what it's like when you get older - I get that too" - but tellingly those with similar experience seemed to be 20 or more years older than me.

    And after a few years, I just lost that sense of connection with "what is normal" for my age. How much was the illness, how much was the aging process? After a decade or so, and then after a period of partial recovery, I just couldn't say any more. I knew that even if the illness were entirely removed, I still wouldn't be 25 again. It gradually dawned on me that so many years had gone by that, even if I recovered fully, I wouldn't ever be recovered to the state of health I remembered as a 25-year-old. Those days were gone - but so was my gauge of what was 'normal' for my age. I'd just become disconnected somehow, I'd lost my anchor. I'd never be able to tell what was 'normal' for me any more, how I would have felt right now if this had never happened to me. However much I might recover, I'd certainly never get back to the way I was 20 years ago.

    In the end - happily - all those questions eventually lost their meaning. All that mattered was to be as well as I could be, and to make the best of whatever I have, right now. Thinking about who I might be now if things had been different, or how I 'ought' to feel at this age if I had never been ill, all that became irrelevant and counter-productive to think about.

    This whole process was easier for me than most though, I think, because I did at least make a significant (though still partial) recovery, which has been sustained. Even there, I can't tell how much is really 'recovery' and how much is just learning to live with a changed reality - I've adapted my entire life in so many ways in order to cope that I don't even know how 'recovered' I am. I do know at least that the core symptoms for me are completely unchanged throughout the whole process. Some things never go away, for me. I just avoid those situations.

    But I do think there was a long period when my unspoken ideal of recovery would have meant going back to my state as a 25-year-old and that became completely unrealistic as I gradually realised this was a permanent thing and not something I would ever fully recover from. I found that to be a trap in my way of thinking and I think that after a decade or so it becomes necessary to break out of that trap: none of us are ever going to wind back that clock to where we were before this happened to us.

    So anway, i find the questions Mette has raised, and this thread, very interesting. I don't see anything poorly worded or insensitive, though some of the themes are sharp and the issues may be uncomfortable for some of us to confront. We all have a great sense of loss to deal with, and facing up to the fact that, no matter what happens, it will never all be wiped away, is a very hard thing to come to terms with.
     
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  19. Esther12

    Esther12 Senior Member

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    I'm just coming to the period of life of realising that, even were I to 'recover', it is doubtful that I would be able to pick up where I had left off... which is what I want to do. I'm a bit pissed off about it really.

    For me, this sort of discussion is confused by the psychosocial quackery which was so dominant at the time I fell ill. I spent a lot of time being reassured, encouraged to believe I would recover, being led to believe that graded exercise would undo the de-conditioning which was all that was perpetuating my loss of capacity, etc. I was stupid enough to trust my doctors at first, and made some big life decisions on the assumption that they were trying to speak honestly to me, rather than paternalistically/disdainfully 'manage' my cognitions. I think that this has left me with ingrained expectations of a return to full health, even though I'm now better informed of the evidence which shows that this is unlikely.

    The absurd ways that some quacks are now trying to redefine 'recovery' so that it means little more than 'disabled, but with a willingness to say they've improved slightly in questionnaires' is really not going to do, and I think that references to prior levels of health are a useful way of maintaining the meaning of the word 'recovery', and in the case of CFS, holding people to the assurances which they gave. 'Recovery' as a word indicates a return to a prior state (I can't imagine Paxman letting Osborne get away with the claim that the economy has successfully recovered, as people have now adapted to their lower incomes) - however much some peddlers of dodgy treatments would like to pretend that simply encouraging a 'positive' approach to finding a 'meaningful life' with illness should be referred to as a 'recovery'.
     
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  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
    I dont class a 6 out of 10 as being recovered or even normal. I class 10 as being a normal person with no health problems. prior to being ill i would have been an 11 or 12 as i was quite fit etc so i dont rate myself on my former function but what is normal. Even now at an 8 out of 10 function i still have alot of symptoms im sure if u put on a 'normal' person that they wouldnt be happy. I think im just able to keep soldiering on. i still have sleep problems and get pain and if i over do something then it wipes me out for a few days. I work fulltime but outside of that i am resting or on here or watching tv. Generally at an 8 out of 10 i dont feel too bad at rest, when i was a 6 i still felt like crap at rest. I will say that a very crappy night of bad sleep can send me down to a 3 quite easily. I think these types of rating scales are only useful to help as gauge our condition and treatment responses, but our illness can fluctuate alot, so generally my ratings are what im like most days of the week.

    I dont know your health but guessing your normal, so u would be a 10( someone athletic maybe an 11?) and i think if we lowered someone to an 8 then they would be very disgruntled etc because they wouldnt be able to do the things that normal people can do. SO i think long term chronic illness has alot to do with acceptance, even though i think many of us dont fully accept it or else we wouldnt be here.

    cheers!!!
     
    roxie60 likes this.

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