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First Direct Evidence of Neuroinflammation - 'Encephalitis' - in ME/CFS
A small study with just nine patients has captured the attention of patients and researchers alike after reporting direct evidence of inflammation in the brain of ME/CFS patients. The finding was one of the highlights picked out by Professor Anthony Komaroff in his IACFS/ME...
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Stigma of Sloth: The Elephant in Our Room

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Dec 10, 2012.

  1. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Jody,

    Nice article. thanks.

    I'd like to add my two cents on the CFS naming issue. It's your situation, so obviously you can call your illness what you wish. My thought is that we need to get rid of the extremely harmful "CFS" name. So I would urge people to select from the following names/categories, bc it will help us all I am pretty sure: ME, atypical ME (applied like 'atypical MS' for example, is applied) and Idiopathic CF or whatever other illness one has. Not intending to offend, so I hope you don't take it that way. Thanks for your consideration.

    Justin
    Allyson likes this.
  2. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    OMG, I'm so sorry. My family in the past has treated me very badly with regard to ME. I had to go to a soup kitchen at one point for food (while my folks are living on Park Avenue). but they never let me get homeless, Thank God! I have thought many times of what that would be like for me and how much worse it would make my ME and my life. The lack of a safety net for us, caused mostly by the Wessely school etc propaganda that we are just lazy and neurotic, is criminal!

    I often wonder how many people with ME lose their insurance, become homeless, have their health spiral down and die an early death. It makes me sad.
    Allyson likes this.
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Good points.
  4. Persimmon

    Persimmon Senior Member

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    It's interesting how we're supposed to be indolent on the one hand, while being Type A personalities on the other hand. The term "cognitive dissonance" comes to mind...
    justinreilly likes this.
  5. Jody

    Jody Senior Member

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    No offense taken. :) In all this time I've never been able to settle on a name that seems right to me. ME may not be what I have, from what I understand MRIs or other tests would show brain abnormalities which mine did not. And, the things I respond to in a positive way seem to fit the ol' grab bag CFS designation. I may well be one who became intensely rundown by tough life circumstances for too long, possible toxic effects from mould and chemical exposure, food sensitivities that went unrecognized for many years, etc.

    I also find ME unwieldy because it's sometimes uncertain when it's used as to whether it is referring to "me" (as in "myself") or the medical condition. The full name for ME is such a tongue twister that it makes listeners' eyes glaze over as well.

    I think the closest I've found to something workable would be CFIDS because it includes the immunodeficiency aspect. My feeling is, it would be good to have a completely new name ... but I don't know what it would be.
    L'engle likes this.
  6. alex3619

    alex3619 Senior Member

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    Quite. We are overachievers and driven people who are slackers. We are afraid of and avoid exercise and we do too much and crash creating boom bust cycles. Its all in our heads yet we can find oh so many thing wrong with the right tests. If its not objectively provable its a physical disorder then it must be a mental disorder ... oh, like diabetes, rheumatoid arthritis, peptic ulcers, lupus and MS?

    The psychiatric researchers who believe its all due to faulty beliefs don't seem to have a rational consistent view. They cannot even figure out what our personalities are ... and yet they are often psychiatrists. Its no wonder the media is often clueless, and the general public is out of touch. (HINT: we have the full range of personalities I think.)

    I agree we need a new name. When the science is there we will get it. There are a number of tests being looked at to see if they are diagnostic. In the meantime the best we can do with ignorance is to be forgiving if we can. The public are not judging us, they are judging irrational stereotypes of us formed without adequate information. Its harder with those close to us though. They might be able to understand if they investigated more, so the question is why don't they? Why jump to snap conclusions? Not everyone does this of course, but way too many.

    Bye, Alex
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  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    My suggestion then would be to use CFIDS; anything but CFS alone. with the same provisos that its none of my business : )
  8. Jody

    Jody Senior Member

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    I will definitely think about it. Thanks for the input.:)
  9. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Thanks for considering.
  10. Jody

    Jody Senior Member

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    You bet, Justin:)
  11. PNR2008

    PNR2008 Senior Member

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    ME/CFS = Medical Death Row Says it all for me.
  12. Esther12

    Esther12 Senior Member

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    I've always been pretty lazy, and do dislike the fact that being honest about this was fine when I was healthy, but is now so frowned upon.

    I was never so lazy that it caused me serious problems (well... not really serious problems!), but I was always someone who would make sure I had plenty of time for playing about and doing nothing, as well as making fun of people who filled their days with chores and activities. I'd always aim to do as little work as possible to achieve what I wanted, rather than try to do the best I could... and I was pretty good at it.

    I think that a lot of people fail to realise that health problems make it a lot harder to be what I would consider to be 'lazy'. When one has the flu and has to take care of that, it's not fun lazing about all day... it's more work than being healthy at work all day. In the same way, just getting through the day, washing, and doing a tiny amount of pilates is now more work than a full days work was prior to getting ill.

    I think that a biopsychosocial approach to illness means that sloth is much more stigmatised amongst the ill than it is amongst the healthy. An emphasis upon creating the belief that people have control over their health, and have a responsibility to behave in a way which optimises functionality, creates endless chores and responsibilities for those with conditions that they do not recover from.
    L'engle likes this.
  13. jimells

    jimells Senior Member

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    I don't understand how nearly 4000 posts qualifies as 'lazy' :whistle:
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  14. alex3619

    alex3619 Senior Member

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    I had a friend at uni who was "lazy". He was always first to complete his assignments. His assignments got good marks, and were always shorter than everyone else. His code (programming) was brief, sophisticated and worked ... but was very hard to read and debug. He was lazy. So he did everything fast and efficient at the expense of other things like clarity. "Lazy" does not always mean what people think. You could sum him up with "why do things the long way".
  15. alex3619

    alex3619 Senior Member

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    Was this lazy or was this about different priorities? We don't live to work unless we are working towards a passion or cause. We work to live. It seems like you had some priorities right. Is that lazy or just wisdom?
  16. Esther12

    Esther12 Senior Member

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    Posting on an internet forum definitely counts as lazing! I'm only just over 3 posts a day... could be worse.

    Defining laziness is a tricky one. Whatever I was doing, I was happy with it! Looking back, it was a bit selfish - but I was only 20... it's okay to be self absorbed then.

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