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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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Best answer to a non-believer

Discussion in 'Lifestyle Management' started by Nielk, Mar 17, 2011.

  1. WillowJ

    WillowJ Senior Member

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    I've sometimes found that tactic to be effective at explaining why the medical people don't understand my disease, including to people who know I'm sick. That way they can understand that I'm not crazy for saying most doctors and the CDC are barking up the wrong tree.
     
  2. moblet

    moblet Unknown Quantity

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    I think they do this for the same reason that doctors and agencies do - because of the belief that we're hypochondriacs. The instinctive response of most people to hypochondria is to try to make the patient's life hell while they continue to claim that they're ill, to give them an incentive to change their behaviour. In my experience those feeling any sense of responsibility for the patient's suffering (i.e. doctors and family members) will be most likely to do this.
     
  3. Wayne

    Wayne Senior Member

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    Hi Neil,

    My own answer to this dilemma involves taking somewhat of a spiritual perspective. And it revolves around the the whole concept of reincarnation. My understanding, which I don't expect anybody else to necessarily embrace, is that many incarnations are needed for Soul to develop certain spiritual qualities. These would include things like compassion, humility, empathy, love, etc.

    Those who have developed these qualities to a greater degree in all likelihood have a greater number of incarnations under their belt, and have learned from their experiences. Those who haven't developed these spiritual traits more than likely have had fewer lifetimes of experience, and so often display certain immaturities in their relations with others.

    Whether true or not, taking this perspective helps me deal with some of the slights that are sent my/our way. They usually come from those who don't yet understand the importance of treating others with kindness and compassion. But we all learn, sooner or later.

    Hope you don't mind a bit of a philosophical perspective. :angel:

    Best, Wayne
     
  4. Mark

    Mark Acting CEO

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    I'm afraid this is spot on in my experience too; there's a 'cruel to be kind' philosophy going on, that many people seem to have taken on board, it's just so tragic. Noticing this in some of my friends and family, and noticing that it's often some of the most caring people who treat us the worst, has helped me to realise that many of the worst authorities who cause us the most harm are also quite likely doing a good thing in their own messed-up way of thinking. It would be easier to understand if it were just really nasty people who were mistreating us, it's the tragedy that people do so from well-intentioned but hopelessly misguided motives that is really hard to deal with. And the circular reasoning and the completely unfalsifiable nature of psychosomatic theory makes the whole mentality seemingly impossible to break down.

    I don't really know of any solution to it all. I can only think of two things that have brought some degree of progress for me.

    One was: I spent a week with my dad where I undertook to follow his instructions precisely, in all matters, speaking to him by phone at the start and end of every day, telling him what had happened, and getting his instructions what to do. At the start of the week he was very confident. By day 4 he was at his wit's end, by the end of the week he had given up completely on solving the problem - but he understood how bad it was and that it wasn't the simple kind of problem he had assumed! That week cost me hundreds of pounds in equipment, clothing, bedding etc that I have never been able to use, and it took me some weeks to recover from what I went through. But it proved a worthwhile investment in the long run, to get a much greater degree of understanding from him, which has been really valuable for me.

    Another thing that has occasionally made a difference has been when people have happened to see me at my worst, or when they have happened to see one or other of my more gross or undeniable symptoms in action, or when they have happened to observe an incident where I've been unable to do something that they know for sure I really, really wanted to do. Being confronted directly by some of our harsher realities can be a really scary eye-opener for people...but it's not something one can engineer I'm afraid.

    Other than that, I would generally ask: How important is this person to you? There's not much point banging your head against a brick wall; often it makes more sense just to move on and find different people who do understand. If the person is that important to you, it might be worthwhile not even trying to confront the issue sometimes - trying too hard to change somebody's mind can end up destroying the relationship; maybe you can get by OK with them not understanding...though that's only possible in very superficial relationships. Finally, it's vitally important to try to stay calm. It can be the most frustrating thing in the world, but if you lose your cool, you generally lose the battle. Assertiveness comes in handy here: just describing, simply, what you experience; focusing on the most obviously physical symptoms, avoiding areas that get mired in a vicious circle kind of argument.

    I think that last paragraph is good advice...I only wish I were better at following it!...:rolleyes:
     
  5. Mark

    Mark Acting CEO

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    As for doctors, I think you've just got to move on and find a decent one. Attitudes vary enormously - some of them are shocked and appalled that anyone still doubts it's a real illness. I think you just need to find one who accepts that there are many things that medical science still doesn't understand; somebody who keeps an open mind and doesn't think they know it all. When it comes to your GP, there really is no value in banging your head against a brick wall...just move on... You may not be able to find anyone who knows anything at all about ME/CFS or how to treat it, that's probably too much to ask, but at least if you find someone who believes it's real, you can work on things together and not get so stressed out by the relationship that you don't even get regular medical treatment for other problems - that situation can get really dangerous because it's amazing how they can fail to treat you for anything at all once they've made up their minds you're a hypochondriac.
     
  6. Nielk

    Nielk

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    Wayne,

    I find you approach very enlightening. I guess you are talking about Buddhism and Karma?
    It is interesting that there is some parallel in Judaism. We also believe in reincarnation and refining the soul.
    The soul must reach a certain level in this world and if it didn't, the soul would be reincarnated in order for it to have a chance to grow.
    I never applied this in my mind as to "forgive" or "understand" for their action because it's their karma - they didn't mature or learn enough yet and don't know better. It's an interesting approach and it deflects one's anger and bitterness. One has to be on a high spiritual level to be so accepting and understanding. I admire your maturity of thinking!
    Thank you for this insight!
    Thinking of this further do you think that it is for the benefit of our souls to be on the receiving end of this pain of our illness?

    Best,
    Nielk
     
  7. Nielk

    Nielk

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    Hi Mark,

    I'm grateful that I found a doctor who specializes in ME/CFS but, his office is a difficult commute for me.
    When I get sick with something other than CFS, I go to this GP who is practically around the corner from me. It's very convenient and usually, I don't even bring up the fact with him that I have CFS. He knows I go to a specialist for that.
    In the past I have cried in his office because of his misunderstanding of our illness. Ihe few times I have to go to him, I mentally prepare myself not to mention anything about CFS. I don't know what got into me that I told him about the finding of XMRV - I was just curious if he heard about it. Now I know that not only is he ignorant of this whole topic, he just doesn't WANT to learn anything about it. Next time (hopefully I won't have to go again), I will stay quiet about the whole subject.

    What annoys me the most is that there are probably hundreds or thousands of doctors just like him. They don't know and
    even worse they don't want to know.
     
  8. Mark

    Mark Acting CEO

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    Hi Nielk. Yes, that sounds familiar: travel further afield for the specialist treatment, go local for regular stuff and don't mention the ME/CFS there - seems like a good strategy to me.

    I've come across the "don't know and don't want to know type" as well, very much so. I saw one recently who said flat out, when I mentioned XMRV, that he'd never heard of it, he never read anything but the Lancet and the BMJ, and he'd believe it when he saw it in there and not before. He also immediately said, when I mentioned the research published in Science, that he only paid attention to 'peer-reviewed' research. I explained that obviously it was peer-reviewed, since it was in Science, but he said he had no interest in what was in Science (and didn't seem to have even heard of Science!) and just went by the BMJ and Lancet. What he isn't required by law to know, can't hurt him, I guess...
     
  9. Nielk

    Nielk

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    The fact that they are not up to date with everything that's going on with ME/CFS "might" be excusable because to be fair to them things are changing so fast in the medical profession and they are overworked. The fact that they are not interested to hear about it, especially if they have patients who suffer from it is in my opinion inexcusable. After all, didn't they go into this profession to help sick people? or is that a very naive take on things?
     
  10. moblet

    moblet Unknown Quantity

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    I recently put this question to a medical student here in Australia. He estimated that about 60% of his cohort was there because of an interest in human health. The rest were looking for a life of entitlement. A psychologist I met who teaches medical students also reported a serious entitlement mentality in a large proportion of students, most notably the white Anglophone males. These students mocked anything they didn't need to learn to qualify to practise.
     
  11. Nielk

    Nielk

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    That's an interesting angle. That would also explain why they don't want to hear information from "mere human patients".
    After all, they are the "all knowing kings".

    I used to think that many doctors might go into the profession for the monetary advantage but with healthcare the way it is today in the U.S.. I don't think it's such a lucrative business anymore.
     
  12. moblet

    moblet Unknown Quantity

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    There's also the legal liability issue they face should they deviate from the textbook. If your illness isn't in the textbook they really aren't allowed to do anything.
    As they say, the difference between God and doctors is that God doesn't think he's a doctor.
    It's still a secure job with good money, but what sets medicine apart from other careers is not the money, but the status. Who else gets to call themselves "Dr" with only a bachelor degree? Plus many of them genuinely believe they are playing God. Even the status is eroding though, as more and more people fall through the gaps in the medical model.
     
  13. Nielk

    Nielk

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    moblet,

    All good points/

    What's scary is when patients think of doctors as God and follow their advice blindly.
     
  14. moblet

    moblet Unknown Quantity

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    What's even scarier is that many of those people proudly call themselves "sceptics".
     
  15. WillowJ

    WillowJ Senior Member

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    It's a secure job, yes, and status, yes, but not good money. About the worst financial decision one can make. To understand that you first have to know that it's not a bachelor degree. (I think a lawyer has the least schooling to the title of Dr.) Physician requires I think a minimum of 6 years of schooling after a bachelor degree. So while everyone else your age is making money, paying off their bachelor degree, buying a house, etc., the doctor is still racking up student loans, working insane hours in residency, and so forth. After all that they do get a higher salary, but they are so far behind and then they have such high professional insurance, that they never catch up.

    However it is a very serious problem that many feel they are omniscient like God, and very nearly as powerful--making life-saving decisions and all. They feel they are elevated and have better judgment than others.

    The problem is that specialized knowledge doesn't give a person better judgment. It only gives them specialized knowledge. Very often they don't have better judgment. In fact, they've specifically been taught NOT to exercise judgment but instead to do exactly as their predecessors have done. Sometimes this is the best course and sometimes it is not, but in either case it is not exercising judgment (discresion, discernment).
     
  16. Nielk

    Nielk

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    In defense of the medical profession, especially the GP or Internist who has gone through 4 years of medical school and an average of six years for internship and residency and they think they are equipped to treat most patients that come their way based on what they were taught.

    We as patients are the nightmare of a patient that they never counted on encountering.

    We keep coming back with bizarre symptoms which they can't see or diagnose and whatever they try on us, doesn't work.

    It's like the patient that won't go away.

    Not being taught what to do with us, they are at a loss.
    They can't admit that they don't know what to do so they blame us. It must be that we are making this up because it doesn't add up with what they learned in Medical school. If there was something really physically wrong with us, something woul show up on examination or test.

    I'm just trying to go into the mind of my GP but no matter how I keep turning it over in mt head, it's still doesn't make sense to be insensitive and make hurtful remarks.

    Maybe it's a defense mechanism for not being able to come up with an answer.
     
  17. Tulip

    Tulip Guest

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    Haven't read all the replies so I may be repeating what others have said..

    Proof that it's a real physical illness : WHO (the world health organisation) has classed it as a neurological disorder since 1969.

    Red cross in several countries, has put a 2 year ban on anyone that has me/cfs or that has had it from donating blood. The UK blood services has put a lifetime ban on anyone with me/cfs or that has had it, from donating blood as they have finally acknowlodged the fact that it is like ms, in that it is a remitting illness and never really goes. How many mind disorders are put on the ban list for donating blood? - none!.
     
  18. WillowJ

    WillowJ Senior Member

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    yes, what you said, too, Nielk, all of it. and the fact that it's not a good way to make money, means people make the choice to be a doctor for other reasons, perhaps unselfish reasons.
     
  19. Zavier

    Zavier [banned as spam]

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    Yes its not a good way to make money and to be a doctor for selfish reasons seems not well. But it can be up to your statement and your style and doctor should be nice to others without any mean.
     
  20. Snow Leopard

    Snow Leopard Senior Member

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    If they are having such trouble treating us, why don't they respond in the most logical manner - create awareness and ask for more research to be done.

    If they aren't doing this, then they aren't doing their jobs properly period.
     

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