public awareness

Discussion in 'Fibromyalgia Main Forum' started by patchwork, May 18, 2003.

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  1. patchwork

    patchwork New Member

    I was just in England for a week (I live in Switzerland but am English) and while I was there I mentioned C.F.S F.M and Lyme Disease to a dozen or so people - none of them had heard of any of them!! And these were all educated people. What's going wrong??? Why don't people know??? I was shocked. Thank God people like Jellybean are trying to get these illnesses into the media.What else can we do??????
  2. klutzo

    klutzo New Member

    I look around at the people I know, most of whom are living such fast, hectic lives that they don't even bother to find out anything about the illnesses that they have themselves, let alone those that afflict others. They are too busy to watch the news, too busy to read, too busy to even take time to think about anything. Yet, this seems to be accepted as "normal" now, and nobody seems willing to pare down their lives and get rid of non-essentials, afraid they might miss something, or fall behind. It does not surprise me at all that they've never heard of these illnesses. IMO, most people these days are experts at whatever they do for a living, but totally ignorant of every other subject.
    People like JellyBelly are a big help, but first you have to get people to stop running around and sit down and read the articles. Good luck doing that here in America, where most people rate their "success" by how much they do and how busy they are. Being late to events is "cool" here, since it shows everyone how important and busy you are that you couldn't make it on time. What a crock. I hope it's not quite this bad where you are.
  3. tansy

    tansy New Member

    The term ME was used in the UK until they broadened the diagnostic criteria and renamed it CFS. The media still tend to use the term ME so you might have got more recognition using that.

    FM is way behind here. A lot of cases, particularly the younger ones; are, I believe, being diagnosed as CFS.

    Where FM is being diagnosed it seems even less well understood than CFS, the pain is recognised but less of the other symptoms.

    There was a report on recent research where a rheumatologist, who specialses in FM insisted that exercise was beneficial, there was no mention of any other treatments.

    I get the feeling from this board that FM as a disorder is a few years behind CFS when it comes to recognition and being taken seriously.

    In the UK we had ME Awareness week but nothing similar, to my knowledge, for FM.

    Jellybelly's efforts will have helped open more eyes, but it's up to everyone to get these DDs in the spotlight and so in to the minds of those who still need persuading.



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