May 12, 2017 Is International ME/CFS and FM Awareness Day
International ME/CFS and FM Awareness Day is May 12th, 2017. Jody Smith shares some information about upcoming events and ways you can be heard ...
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The Abundant Energy Summit

Discussion in 'Upcoming ME/CFS Events' started by MeSci, Aug 26, 2015.

  1. whodathunkit

    whodathunkit Senior Member

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    I had to let go of mine and rearrange priorities quite a few years ago. Sadly, my house is still suffering from it's relegation to the bottom of the priority list in the face of getting through school and then getting a full-time job to keep the bills paid. For a long time it was all I could do just to manage that. Even the current uptick in energy hasn't helped, because I still don't have enough energy to go around (priority is now work + sleep + getting my body back in shape). Plus the last shrink I saw told me I have PTSD over some old trauma, including things that happened while I was living in this house. :meh: I used to say "I fought the house, and the house won."
     
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  2. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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  3. whodathunkit

    whodathunkit Senior Member

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    These *are* high-stress occupations. Aside from the obvious life-and-death-and-possible-lawsuit stress from being a healthcare work, and the stressful double-bind teachers are put into every day, anyone who doesn't understand how stressful a mind-numbing job as a clerical worker can be (espeically with a bad boss), just doesn't get much.

    This sounds like the very definition of STRESS. Not trying to make you feel bad, BTW, just commiserating. :)
     
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  4. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Doesn't that tempt you to say "Well, you just never tried the right therapy as prescribed by me, doctor.

    Fist meet hand."

    EDIT:

    I meant "fist meet nose/face"

    We are having trouble with these sayings, aren't we?! :lol:
     
    Last edited: Aug 29, 2015
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  5. beaker

    beaker ME/cfs 1986

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    None of this would apply to cluster outbreaks. Especially where little kids were involved.
    Everyone seems to forget about that when they go back to the yuppie flu traits.
     
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  6. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    There were some radio/TV programmes a few years ago about the most stressful situations (including jobs) being those where the worker has least power and control over what they do. I can relate to that.

    Thank you. I have to try not to think about it too much, otherwise I fear my head might explode and make a nasty mess.
     
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  7. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I absolutely agree that the proportion of jobs would not reflect people's abilities or desires consistently. But the presence or absence of some sort of difference in proportion might give some sort of a hint to follow up.
     
  8. whodathunkit

    whodathunkit Senior Member

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    Yes, absolutely. But you know, the more I've resigned myself to the fact that the only thing I can control is my reaction to the circumstances outside of my control, the more peaceful and content I've become. Not that I'm entirely peaceful and content by any means. I'm not sure my snps would allow for that. :p

    But the "cliche" of the alcoholic's Serenity Prayer really is a truism, if we can let go enough. I'm much more content with my life now, and I think that's one thing that's helped lead to the recent progress I've made with my physical health. My stress level went way down when I decided to stop giving much of a shit about a lot of things :lol:, including the way I felt physically. Do I feel so bad that all I can do is lay around and watch TV, or sleep? That's okay! Maybe tomorrow I can do more, but if not, oh well. Being as well rested as possible is the priority. Is my boss putting me in an impossible double-bind yet again? That's okay! I do what I can of what is my job, reframe and punt what I can back to her, and not worry about the rest of it. Is my idiot, slacker, passive-aggressive deskmate still blowing her nose 10x/day and leaving crumbs all over the desk? That's okay! There's Lysol wipes for that. Etc.

    And FWIW, I started letting go and rearranging my mindset some years before I hit PR and found the help I've gotten here.

    NOT saying it's a simple as thinking your way out of illness, BTW. It absolutely isn't. And the sicker you are the harder it becomes to work with mindset. But IMO mindset towards life's circumstances really is a big component of physical health. It's all a very complex interaction. What's sad is when people who promote the mindset theories of helping physical illness abuse them or pervert them to their own purposes by proposing them as a "cure", which they most definitely are not.
     
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  9. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Firstly, it seems to me to be wrong to even talk about 'high-stress' - which I guess is the point he is making. 'Stress' is too vague to be any use, as I see it. And why 'stress'. One can almost feel the therapist peering over your shoulder hoping to find something to talk down to.

    But then hang on a minute, aren't about the most stressful jobs you can think of, er... teaching, nursing, being a doctor... Who knows?

    And it looks very much to me as if that list was cherry picked to suit another hypothesis. It would just be nice to have some raw unbiased data on job frequencies.
     
  10. A.B.

    A.B. Senior Member

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    Right. I found a paper that might have some data:

    Chronic fatigue syndrome: occupation, medical utilization, and subtypes in a community-based sample.

    http://www.ncbi.nlm.nih.gov/pubmed/11009329

    I can't access the full paper though.
     
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  11. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Nice try though. I don't think I can get it up either. It is so ridiculous that this stuff is not publicly available. - especially when it is over ten years old.
     
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  12. crowquill

    crowquill

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    I am not convinced that the kind of job you do is necessarily correlated to personality type.

    I did happen to be a perfectionist academic scientist but knew many other scientists who were pretty laid back and less worried about detail (some have lab technicians to take care of that). Likewise I have known perfectionist artists, carers, stay at home parents, salespeople etc and people less caught up in doing everything totally correctly in the same and other professions.

    As MeSci says, the job you end up in may be for a whole range of reasons and whereas some professions may be better suited to certain personality types, I would not expect it to be a reliable indicator.

    Andy
     
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  13. GracieJ

    GracieJ Senior Member

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    I took this discussion up with a client last night. She is a pilot for a major airline, temporarily grounded due to a skiing injury. It was an interesting conversation. She told me about the testing they do to stay certified. Role-playing goes on for four hours with variations of 30 scenarios thrown at them to handle as part of day one. Day two is a little easier, more routine day-to-day activity.

    100% correct is expected. She said she used to be a scattered person, never a perfectionist. She started training at age nineteen, ten years ago. Now she feels like she is a total perfectionist as the job requires it. She describes it as absolutely having to get it all together then keeping it that way.
     
  14. A.B.

    A.B. Senior Member

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    I was able to get access to the paper, and here is the (disappointing) paragraph on occupation:

     
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  15. Hutan

    Hutan Senior Member

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    Two words - PACE trial

    That was supposed to find out whether CBT and GET worked or not. Despite the fact that we can't be sure that all of the participants actually had ME, the trial actually showed that CBT and GET do not improve patients' physical performance. And yet that trial has been spun as proving that CBT and GET are great treatments. It's resulted in a lot of people being harmed. It directly wasted millions of pounds that could have been spent on finding a biomarker and has encouraged the wasting of many millions more dollars and pounds on irrelevant research and treatments.

    Humans are enormously creative and especially so when trying to avoid something we fear. Just look at the great range of beliefs about life after death. Death - no, I'm going to heaven. And we also try to think that we won't be affected by diseases. Heart attacks - oh, I eat well and exercise, I'll be fine. Schizophrenia or autism - oh, that's caused by mothers doing something wrong, I'm a great mother so my kids will be fine. CFS - oh, it's probably all in their minds, but even if it isn't, it's because those people have some weird personality trait that I certainly don't have. So I won't get that.

    I've been guilty of it myself. I don't (yet) have fibromyalgia or MCS and I've found myself drawing negative conclusions about the people who do. (Sorry)

    So, we can expect any study looking at the past professions of people with ME to be affected by a similar bias. Oh, so there are more doctors who got ME - those people just couldn't cope with the stress/were high achievers with demanding parents... Oh, so there are lots of clerical workers - repressed emotions because they have little control in their lives and aren't dealing with conflict well. etc

    First, let's find a biomarker so your sample is accurate. And let's find some treatments. (And let's do the same for all the other illnesses with no treatments). Then you can conduct surveys about past professions.
     
  16. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    I wondered if they were hoping the quacks would hear their talks.... There were a few legit people there, but it looked mostly like a quackfest to me.

    I did'nt listen. @GracieJ or whoever it was that asked, I have trouble with audio, too. No way I could last through a 3-day conference, even not taking notes.
     
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  17. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I don't know why that would be disappointing. It's just findings. Facts are useful.

    In relation to health professionals, I think we would need to see how they rate in the prevalence of other illnesses too. There are a whole load of confounding factors, for example - better status, income, access and maybe intelligence and confidence would make them more able than the general population to recognise when something is wrong and to push for tests, diagnoses, etc.

    Lower-status people may be more prepared to accept wrong diagnoses and clinical dismissal.

    People in 'good' jobs, especially those in the public eye, will find it harder to hide their illness/their illness will be more visible - than, say, people who are unemployed, self-employed, stay-at-home parents or carers.

    So there may well be substantial inaccuracies due to diagnostic failure.
     
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  18. A.B.

    A.B. Senior Member

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    The study contacted a large number of randomly selected people and referred potential CFS patients to a team that would go through the diagnostic process.

    The increased prevalence of CFS in health care workers is probably real.
     
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  19. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    OK - that probably does improve the accuracy. It may well be that there is a higher prevalence of particular (former) occupations among pwME.

    For myself, I have always been rather perfectionist, realising recently that I am borderline Asperger's (which would have been obvious if I were a child nowaways). The perfectionism was partly due to parents who demanded very high standards, and nothing I did was ever good enough, so that I ended up feeling as though I had someone over my shoulder constantly telling me I was doing, saying, liking and thinking the wrong things.

    That is pretty stressful! And it becomes a permanent aspect of personality.

    I think it's quite easy to see how such a driven person can be liable to push him/herself too hard - more than the average person. I believe that doing this when one has certain viruses can damage the immune system. This may not be how all pwME become ill, but I think that it may account for a significant subgroup.

    Does @Jonathan Edwards know of mechanisms by which this could occur?

    I doubt whether changing one's personality type - even if it were possible - could fix the damage though.
     
  20. Wildcat

    Wildcat

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    People who consider themselves perfectionists say so, while those who don't tend not to comment. I do think the idea that lots or all pwme are perfectionists has been overstated.

    It's not always the case that pwme push themselves in the early stage of illness because of perfectionism or being 'driven' (when its unlikely they even know what illness they have).... It is the case that most people's lives do not allow for rest in the early stages of undiagnosed illness. What does one do? Abandon children, drop out of your career, stay off work which requires enough sick notes, drop out of university, stay off your cleaning job as too exhausting?

    What on earth do people do, with GPs trotting out lazy diagnoses of stress, and pointing out that you are not stressed goes unheared, the boss breathing down your neck, uni tutors issuing warnings and deadlines you are too ill to meet.

    If we all knew we had ME in the first weeks, and knew about pem, and rested from the beginning, we would still be at risk of losing our jobs, homes, education courses,


    An early diagnostic test would be pure gold.
     
    Last edited: Aug 30, 2015
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