Faces of Chronic Fatigue Syndrome (Connecticut)

Discussion in 'Fibromyalgia Main Forum' started by equanimous, Jun 14, 2009.

  1. equanimous

    equanimous New Member

    Just curious if anyone else is planning to go see this photo exhibit when it comes to Meriden, CT. I live in the Boston area, but I'm thinking I might trek out to CT to see it because it would mean a lot to me to see such a public recognition of the suffering brought on by this horrible illness.

  2. skeptik2

    skeptik2 Member

    Don't bother; we should not support this charade; it says nothing about M.E. and it is another way whe CDC and CAA wasted millions of our dollars.

    Yes, it makes the name CFS more knowledgable to others, but I doubt they are showing people who have true ME, but central fatigue.

  3. equanimous

    equanimous New Member

    Too late, haha, I already went. I do agree with you that it's disappointing how the phrase CFS is used in lieu of M.E. or even CFIDS. However, based on the way the subjects featured described their symptomatology, I would have to say that most, if not all, of them probably do have true M.E. I'd like to embrace the exhibit as a step forward in terms of public education and awareness, but I acknowledge that it wasn't 100% accurate in its depiction of ME/CFS.
  4. jasminetee

    jasminetee Member

    I always wanted to go to that exhibit. My folks have. It's good to hear that the PWCs depicted in it really have ME.

    Do you remember what was inaccurate about how they depicted CFS? I have a mind to possibly write them if it's possible to ask for changes to make it accurate depending on what they've said.
  5. skeptik2

    skeptik2 Member

    Please don't support this lie.

    Go to oslersweb.com and read the blog "Numerology", by this renowned author of Osler's Web before you go any further, I beg you.

    Thank you,
  6. jasminetee

    jasminetee Member

    Are you referring to this: "Number of years “Faces of CFS,” a photo display of well-coiffed people with "CFS," has been on the shopping mall circuit:

    3" ?

    That doesn't bother me because people say we all look good. I'm mostly bedridden but I can still make it to the salon once a year or so myself. Plus, even pics of PWCs online that are also completely bedridden or even those who die shortly after their last pic was taken look good and look well.
    [This Message was Edited on 06/21/2009]
  7. skeptik2

    skeptik2 Member

    I am referring to this "Faces of CFS" display being paraded around the country.

    1st, it is the CDC's continuing way of "branding" the name CFS into the U.S. consciousness, thereby making it even more difficult for the general public, our families, colleagues, cohorts, friends, et. al to understand the illness and how serious it can be.

    This display is part of the CDC's lie to the public: they are claiming over 4 Million people have CFS; they include depressives, abused children, and people "tired" from all sorts of illness, even those with cancer, MS, heart disease, etc. would qualify under the new criteria they are just now trying to push down the WORLD's collective throats.

    Please don't support this lie: that is my advocacy alert, LOL...but, I do mean it.

  8. FM58

    FM58 New Member

    I agree the information on ME/CFS is not exactly accurate. However, this exhibit is aimed toward the general public, not to those of us who are ME/CFS patients.

    I have seen this exhibit twice.

    First time, was 3 yrs ago (in spring) at a Conference. Then again when it was at Penn Station in NYC.

    The people in this are "well-coiffed" because it was a photo-shoot!! A very well respected photographer was used for this. One of the points of this exhibit is we don't look sick; it could be the person sitting next to you w/ ME/CFS; it could be a family member.

    ALL of the people depicted in this Faces exhibit indeed DO have ME/CFS! In fact, at least 2 of them have relapsed since.

    This is a way to educate people who do NOT have any knowledge about ME/CFS at all. Those of here are educated enough and advocate about our illness.

    Go ahead and see the Faces of CFS (if it is not too far to travel) and bring family and friends with you.

    Thanks for the update on it's location; I used to receive the travel updates, I have not received one in ages - I did not realize it was still touring.
  9. Spinetti

    Spinetti New Member

    I was too sick to go downtown to see the display, but I did see the online version.

    It is a slick PR promotion of the CDC's CFS brand (Nice pun, BTW) designed to mollify patients while really changing nothing. That was my impression.

  10. skeptik2

    skeptik2 Member

    Do they ever call it ME?

  11. DoveL

    DoveL Member

    Hello Liz,

    I hate to be a 'downer' , but was not impressed.

    I saw that 'Faces of CFS' exhibit in NY CITY in Penn Station, and I am sorry to say, I was truely disappointed!! (it was VERY SMALL-and made of cardboard). Infact it made me cry when I saw it because I was very disappointed. It was a hot day, and was feeling sick, and my boyfriend and I took the train into NYC just to see the exhibit. When we got there, we both looked at eachother; our response was 'this is it'??? (because it was so hyped up on certain websites)

    But one good thing was the pamphlets that were there for people to take and read. The pamphlets were very imformative, but there was knowone passing out the pamphlets, you had to walk up to this cheesy exhibit, and take the pamphlet yourself.

    I have to say, it was better than nothing.....

    [This Message was Edited on 06/24/2009]
  12. skeptik2

    skeptik2 Member

    Do you have any idea how many millions of dollars went into that "cheesy" exhibit?

    About 5.

    Your tax dollars and patient donation dollars paid for it: do you think you got your money's worth?