educating the doctors about CFS a crazy idea?

Discussion in 'Fibromyalgia Main Forum' started by bigmama2, Jan 3, 2008.

  1. bigmama2

    bigmama2 New Member

    i am so sick of drs (and the public) not knowing squat about CFS or even not kowing it is a real illness!!!!! i had a conversation with a friend who is a nurse. she knows nothing about cfs thinks my problem is my weight and/or depression. she recently asked a dr. acquaintance of hers what do you know about CFS?. he replied "it's not an actual illness, it is all in their heads." she told me this, and i am soooo pissed (at the dr.)

    i decided that this year i will give written info to all my friends and family to educate them about CFS. well, just now, i am thinking, why stop there? why not educate all the ignorant local drs too. I just cant take the ignorance and disbelief anymore!!!!!!!!!!!

    i could somehow find all the drs home or office addresses and send them all legitimate CFS info, from CDC, CFIDS association, Stanford, etc. Then maybe they would get a clue.


    what do ya think?

    (pissed off and not gonna take it anymore)
  2. Kathleen12

    Kathleen12 New Member

    But I think if any of the doctors around here got anything on CFS/ME/FIBRO they'd either just skim through it or just send it directly to the garbage. And if any did actually read it, they'd find all kinds of holes and disregard the info. Maybe they'd be different whrer you are.

    Gosh..I hate being so skeptical!
  3. Lichu3

    Lichu3 New Member

    but how to go about doing it is difficult.

    Physicians get a bunch of stuff in the mail. Like everyone else, they (or their staff) sort out what isn't relevant or important and discard it. So I'm not sure what a mailing would do, even if it came from a respected source.

    What would be interesting though (and hard to do given the state of things) would be if there were a requirement for all practicing health care providers to get educated about CFS in order to maintain their licenses. (i.e. you need both a bark and bite)

    California has laws requring many health care providers to get chronic pain managment education and elder care education in order to keep their license. Whether what is learned gets put into practice is another question.
  4. ScottInCalifornia82

    ScottInCalifornia82 New Member

    I say go for it. I think your best bet is to send them research articles from peer reviewed journals as well as information put out by the CDC.

    As bad as it is right now for us right now, I personally have a prediction that we are nearing the end of an era of CFS ignorance. Here is my reasoning: if the Montoya valcyte trial, which is sponsered by Roche, is successful the drug Valcyte will be officially approved for the treatment of CFS, or at least a subset of it. Roche will then be sitting on top of a drug that is already fully developed that could be adminstered to an additional hundreds of thousands of people. Their customer base could sky rocket overnight. The only thing stopping them from selling the drug to the new customer base is lack of awareness of CFS and doctors not taking it seriously.

    Well if its one thing that the pharmaceutical companies are good at, it's marketing. I garantee that if valcyte is approved for treating CFS it won't be long before anyone who watches any TV, including doctors, will be fully aware of CFS and it's seriousness. Think about all those commericials for restless leg syndrome, ED and insomnia. I believe that the Montoya research could have a monumental impact on CFS.

    Anyway, thats just my take on it. In any case, I think that as ridiculous as things are right now, there's reason to be hpeful things will get better in the future.

    [This Message was Edited on 01/05/2008]
  5. aftermath

    aftermath New Member

    Don't waste your time right now.

    There are two big things on the horizon poised to fix things substantially for us.

    1) The possibility that Montoya's second study will find a correlation between the use of anti-virals and people getting better.

    2) The possibility that the FDA will approve Ampligen as the first drug for ME/CFS.

    Those two things--if they happen--will go further than any possible mail campaign.

    Hang in there, things are poised to change.
  6. returntosender

    returntosender New Member

    Go for it! I know someone on an awareness forum who does this and she said that when she had an appointment after she sent a doctor information he told her he had received some information about fibromyalgia and that it had inspired him to do some research so he knew about a new treatment she could try. I don't know what the treatment was but even if it didn't help her, it's nice to know that a doctor was interested and he read the information and more!
  7. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Yes, we must remember, that doctors don't usually get the God complex until after they go to medical school. They invest so much to learn, years upon years, that they can't imagine afterward that anyone can bring them something new unless that person also went to years and years of medical school.

    But hidden below that conditioning, is usually an 18-year-old who wanted to help people. So intrigue them.

    Since I am in the news business, I also think of how to attract news to get awareness. I have thought of doing a "lay in" demonstration in front of offices of doctors who don't recognize it as organic.

    Imagine ten patients in front of a doctor's office in lounge chairs, all in pajamas, with signs on the back of their lounge chairs saying "We're tired"

    Then, each one has a different one:

    "We're tired of doctors that don't understand our illness is not psychological."

    "We're tired of waiting two years or more for Social Security to realize how disabled we are."

    "We're tired of insurance companies not covering the supplements which are a necessary part of our treatment."

    "We're tired of not getting our fair share of research money."

    You get the idea.

    And of course, getting the sickest of us out there is best.

    News media will come, T.V. etc. Doctor gets bad press, and patients hand out info of latest findings on CFS.

  8. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    Oh, and once a drug company is approved for providing something for treatment, don't worry, they will get the awareness and recognition accomplished.

    Hey, at least some good will come from all that money they make. They can pay for our advertising, whether their drug works or not.

  9. Lichu3

    Lichu3 New Member

    When the drug companies market a drug, some is spent on direct-to-consumer advertising (those sometimes annoying commercials you see in the paper, on TV, etc.). When people go to their appointments and ask for something, there is pressure for the health care provider to read up on it, especially when several patients keep bringing it up. So I see the drug companies mainly influencing it in this way.

    If you do bring an article to your MD, I recommend the Canadian Consensus Criteria.

    The trials will help but even for well-proven illnesses, diffusion of knowledge takes many years (I hope I'm wrong) so other strategies to educate still must be brought forth.
  10. bigmama2

    bigmama2 New Member

    it is very helpful to me. I am still thinking about this- the pros and cons of it. one thing is for sure---I WILL educate all my friends and family about CFS this year. and maybe the drs too.?.

    yes it woudl be soooooooo fantastic to get the drug companies who make valcyte and ampligen to spend huge bucks to educate the drs and public about cfs. that would be like a miracle for us.

    also i loved the idea of a "lay in" from Tina.

    my mom had a great idea-- she said to contact a very established cfs support group (like cfs assoc of New Jersey) because they had done alot to educate drs and public there. and i could ask them for pointers. why re-invent the wheel, right?

    take care everyone- thanks again!
  11. Lichu3

    Lichu3 New Member

    Both NJ and Vermont CFS groups have a manual prepared for MDs and have worked to get it distributed. So contacting NJ is a good idea. Also, you might want to check out if there are any active Pennsylvania CFS groups -- they might have something going on already or can help you with your ideas.
  12. Mega

    Mega New Member

    my dad is a doctor and he's told me cfs is not a real illness

    he's even sent my medical journal articles (he didn't read them, he just assumed they said what he thought, they actually said it was a real illness)

    my sister is a doctor and I don't get the time of day from her

    there are some doctors who understand but the rest are in no hurry to change their minds about what they already believe
    [This Message was Edited on 01/05/2008]
  13. HagerTX

    HagerTX New Member

    The doctors are going to have opinions based on their own personal experience. Sometimes the medical community in general will not catch on to things as quickly as we would like. For instance, back in the early eighties, AIDS was thought for a time to be largely in people's heads and perhaps stress related.

    I wouldn't think that doctors in general would be receptive to being educated or informed by anyone but colleagues, hospitals etc. Your best bet would be to try to find some solid material from, perhaps, some of the places you've mentioned and try to inform your friend who is a nurse. If then she becomes convinced, then maybe her doctor friend would be open to reading about it some.
  14. jewels920

    jewels920 New Member

    this post. And show some support for those of us who have been psychologized half to death by ignorant people who don't want to be bothered with the problem solving it takes to treat our DDs. All it would take is a little problem solving and the understanding that we are each individuals and our biology is unique, as well.

    I've had pretty good luck--only one doc has called my FM a 'trash can diagnosis' (I haven't been diagnosed with CFIDS) And I replaced her right away. Don't have time for that.

    Good luck and many hugs to you bigmama2 and others for not taking it anymore.


  15. Lichu3

    Lichu3 New Member

    I am sorry your family is having a hard time accepting your illness. It might not help but here is an article written by a surgeon with CFS that you might want to bring up with your family. It is from JAMA.

    Here is a letter by a another physician with CFS:

    I worked in healthcare and have family/ friends who are physicians. I have been lucky in that my bosses (MDs) were supportive of my illness, recognizing that they knew very little about it. My friends and family have also been great.

    What is troubling though is that while they have no problem accepting I have physcial illness, some still have problems acknowleging that other people might also be suffering what I have rather than a mental illness.
  16. gapsych

    gapsych New Member

    My physical therapist said that all physical therapist from the hospital in my HMO, are required to take training on CFS. She even knew about PEM. At that point my jaw must have hit the ground.

    I think that is the way to go. Making it a requirement for medical personnel to get training. My former PCP even did a fellowship (?) on neuromuscular conditions.

    I have been extremely lucky that all my doctor's understand FM/CFS, except the original doctor who diagnosed me. Go figure.

    And yes let us get the information out there whether it is through ourselves or the groups who advocate on our behalf.


    [This Message was Edited on 08/13/2008]
  17. ajl338

    ajl338 New Member

    I live in the UK and when i was diagnosed 10 years ago CFS/ME was a psychological disease and "all in my head" Since then the world health organisation has classified it as a neurological disease.

    The organisations in the UK had a huge publicity drive to publicise CFS/ME a few years back and i think that it is more understood than it used to be. However it isnt excellent.

    I went and saw 5 different doctors before i found one that knew the disease existed.
    I used to be worried about telling people i had it because i people used to say oh thats a psychological illness or thats what you get when you spend too much time partying.
    In the past few years i have told a few people and actually a lot of people have heard of CFS/ME but know very little about it.

    AYME made a really good video aimed at school aged kids to explain CFS/ME

    I dont tell many people i have CFS/ME because i dont want them to think that it is an excuse for me not to do something.

    Good luck telling people. I found it hard when i was still walking but when i starting using mobility aids people kept asking what was wrong so i said CFS/ME and most looked blankly at me

  18. Gumbo

    Gumbo New Member

    Has anyone ever seen a program about CFS that educates the public?

    I heard Dr. Oz was going to have his own show this fall. Wouldn't it be great if enough people contacted him & he decided to devote a program to the whole issue?

  19. Honora88

    Honora88 Member

    Just make sure the info doesn't get lost. A lot of pharma reps throw literature at them all the time

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