Very Very cool news!!!!

Discussion in 'Fibromyalgia Main Forum' started by AuntTammie, Jun 24, 2010.

  1. AuntTammie

    AuntTammie New Member

    I just got off the phone with one of the women who is working on the documentary called, "What About ME?" For anyone who is not familiar with the work-in-progress there is a web page and a facebook page all about it and they have some preliminary video clips

    .....It was originally going to be based on the book with the same title, but they decided not to make it fiction - a very good idea, imo.....bc there is already too much doubt about the illness, a fiction movie would not be helpful (the book is written by an ME/CFS patient, but is fiction)

    ......anyway, they have interviewed the Whittemores, Dr Hooper (the author of Magical Medicine, How to Make a Disease Disappear - that's basically the UK's shorter version of Osler's Web) and several other good docs & sources, and are really trying to get as much good factual info about what has happened (the CDC, etc) as well as how bad the illness is, etc.....looks like it will be a wonderful awareness video

    well, they asked for patient stories and I sent one in and they contacted me (they may still be looking for more input, if anyone else is interested, check out their sites......sorry I don't have the links available, but I think the title will get you there, and there was info posted on here about it before)

    so, anyway, the woman who interviewed me was really nice and definitely knows a lot about ME/CFS, and I am really excited about very hopeful that it will wind up being a great way of furthering awareness

    oh and in case anyone is wondering, it is still a while until it will actually be out, they are just gathering a ton of info and interviews rt now
  2. mbofov

    mbofov Active Member

    That's great, Aunt Tammie. You will have to keep us posted if they use your story, etc.

    I just looked up Magical Medicine, I'd never heard of it before, and you can download the book for free. (see

    Here's a little blurb from it:

    Since 1993, the giant US permanent health insurance company UNUMProvident has been advising the UK DWP about the most effective ways of curtailing sickness benefit payments. The PACE Trial is run by psychiatrists of the Wessely School, most of whom work for the medical and permanent health insurance industry, including UNUMProvident. These psychiatrists insist – in defiance of both the World Health Organisation and the significant biomedical evidence about the nature of it ?? that “CFS/ME” is a behavioural disorder, into which they have subsumed ME, a classified neurological disorder whose separate existence they deny. Their beliefs have been repudiated in writing by the World Health Organisation.
    In 1992, the Wessely School gave directions that in ME/CFS, the first duty of the doctor is to avoid legitimisation of symptoms; in 1994, ME was described as merely “a belief”; in 1996 recommendations were made that no investigations should be performed to confirm the diagnosis and in 1999 patients with ME/CFS were referred to as “the undeserving sick".

  3. AuntTammie

    AuntTammie New Member

    the Magical Medicine paper is really very well written, though lengthy.....definitely worth reading

    even just looking at the table of contents where it lists the various sections on all the documented physical abnormalities associated with ME/CFS is enough that I don't know how anyone could doubt how real and (not psychological) this is
  4. mbofov

    mbofov Active Member

    It's mind-boggling how the denial continues. That's why I copied that quote about Unum - that seems to be the only thing that could possibly explain the complete denial of this illness in the face of overwhelming evidence to the contrary --- perhaps the new XMRV study might shake some of this intransigence loose!

  5. HeavenlyRN

    HeavenlyRN New Member

    ......but I'm not surprise that UNUM would do such a thing. They're pretty sleazy.
  6. AuntTammie

    AuntTammie New Member

    yeah the unum connection is just one of the ridiculously poorly handled aspects of this whole mess (& that is putting it very much more nicely than I would really like to!)
  7. AuntTammie

    AuntTammie New Member

    wow - wouldn't that be cool.....donation buckets for ME/CFS/FM research!!