Research for CFS/FM on the back burner??

Discussion in 'Fibromyalgia Main Forum' started by icare, Dec 9, 2005.

  1. icare

    icare New Member

    I feel any illness that isn't life threatening, wont probably get alot of funding for a cure.
    There are too many illnesses that are life threatening and more too come..Dont want to sound so negitive but i feel this is realility.
    If a VIP gets this illness and a few have, it will create a boost in interest, but people lets face it..Do we look sick??? and its unfortunate, that is what people look for.
    A guy can walk in a room or i should say be wheel in a room wearing a neck brace and a body case and get alot of attention,You try walking in the same room and see what happens...Nothing ..This is an invisiable illness..Only we know how much chronic pain we are in and the struggle we have trying to make it through each day.
    This is also why its so hard to get disability.
    I just wish i could trade places with a few important people in this world, wouldnt they be in-lightened.

    Just my thoughts today

  2. Mikie

    Mikie Moderator

    Pharmaceutical companies decide what they will research and develop depending on the potential to make lots of $$$$$$$$$. As our illnesses get more and more recognition and press, it is more likely that one of these companies will try to develop treatments for us. Otherwise, we will have to rely on NIH grants for research and they have screwed us over for years.

    While most docs wanted nothing to do with us, the FFC's recognized a need and have successfully tried to meet that need with special clinics just for us. Their success with treating patients may also compel drug companies to develop med which help us.

    Love, Mikie
  3. floridamarlen

    floridamarlen New Member

    i lived in mass for 35 yrs.diagnosed with fm given narcotics and tranqs for 6 yrs.moved to florida and found clinical research. theve been a godsend.they are on their 3rd clinical trial of 2 different drugs. ive been lucky enough to get one of them i feel like a human being again. there is an enourmous amount of research for fibro you just have to read read read anything you can.this site is a wonderful place to start. dont give up there is help out there.
  4. tansy

    tansy New Member

    has been small scale and privately funded, but it is helping to confirm the physiological changes in ME/CFS. It may well feel as though research is on the back burner because the psychologisers have been flooding the medical press with their hypotheses.

    There are advantages in privately funded research, less vested financial or political interests are involved. I agree with Mikie; if the pharmaceutical industry comes across what they consider a financially viable Tx they will invest money in a new med(s), or expand research on meds that still have patents.


    There is too much bias on official sites; this is frustrating doctors and patients alike. It’s even worse in the UK, a situation that should serve as an example of why biomedical research is important as well as ensuring the results are made available to all medical professionals.

    Yep my heartbeats can be like that, this problem improved considerably for some time this year, but I’m just having a relatively mild increase in them during the last week; this followed a flare up of other symptoms. Mine are not related to panic attacks, nor situations that might trigger a flight/fright response, they just happen. Despite my medical history, family medical histories, and a few ? marks over my heart; this issue has not been investigated – doctors in the UK are discouraged from investigating PWME/CFS for fear it might pander to our misjudged illness beliefs.

    Hope you get hold of your Christmas Spirit in a bottle soon.

    Love, Tansy[This Message was Edited on 12/11/2005]
  5. Rene

    Rene New Member

    Well there is help and I have posted this a couple of months or so.

    Congress approve 10 million for a new research lab at the University of Reno for CFS and CAncer. So to me that was sooooooooooooooooo exciting and also we need more stuff out here on the west coast.

    Yea I agree that like aids they got all the money cause its not like a death sentance anymore.