I don't care about CFS treatments, cures and research

Discussion in 'Fibromyalgia Main Forum' started by bigmama2, Nov 11, 2008.

  1. bigmama2

    bigmama2 New Member

    Ok, i got you to read this post! thanks!

    Of course I care about treatments and cures for CFS!!!!!! (this illness has devastated my life for the past 14 years. My brother has been very ill w CFS for the last 7 years.) But if we- the CFS patients- don't join one of the CFS advocacy groups, the message we are sending to our government is that we dont care. I do not intend for this post to be controversial or upset anyone. I just want to try to spread the word about how important it is for us to stand up and be counted, and try to make a difference.

    I am very concerned at the lack of interest about this topic.

    PLEASE PLEASE PLEASE join one of the CFS advocacy groups. there are several differnt ones. main one is the CFIDS association of america. another is a group called PANDORA (for all neuro endo immune diseases- cfs, fibro, gulf war symdrome, mult chem sesnitivities). there are several other ones too. to join the CFIDS assoc of america is about $35.00 a year. most of us can afford this.

    none of these groups are perfect. however there is strength in numbers. think of all the other illnesses who get tons of research money and have made so much progress in diagnosing, treating, and public awareness. how did this happen???? Those who are ill joined groups, banded together, and put pressure on their governments.

    Money for CFS research in the United States is a pitiful drop in the bucket compared to many other chronic illnesses. There are at least one million people w cfs in the US. however many of them have not even been diagnosed yet!!! why? because of the lack of awareness and education about CFS in our medical system. so many drs still do not know about CFS. these organizations work to educate them.

    how about all the people so sick w cfs that they can not work, yet they cant get the disability that they deserve and need???? if CFS were more widely respected as a real medical illness this would make disability easier to get.

    these organizations do so much to help us, but they need us to help them.

    STAND UP AND LET YOUR VOICE BE HEARD!!!!!!!!!!!!! GET INVOLVED!!! JOIN A GROUP!!!! Or start your own group, or be an advocate in any way you can. if we dont stand up for ourseves, who will????? no one.

    thanks for reading this.
  2. gapsych

    gapsych New Member


    I just joined CFIDS, I think it was only $35.00, and for the holidays am asking people to donate.

    Take care.


    Let's keep this post bumped!!
  3. quanked

    quanked Member

    you assume others have not joined advocacy groups. I have been with CFIDS for a number years--long before I found this board. I am sure I am not the only one.
  4. SpecialK82

    SpecialK82 New Member

    I totally agree - I am a member of CFIDS and they use the total membership numbers to show importance of our issues when they lobby Washington.

    There is strength in numbers!!

  5. Rafiki

    Rafiki New Member

    Great hook at the top! Lots of relevant info following. I'm in the choir but appreciate the preaching!

  6. stschn

    stschn New Member

    Thanks for saying this as it is go true. We really need to do what ever we can. The last few weeks have shown us that a little bid from a lot of people really can make a differance.
  7. Leaknits

    Leaknits New Member


    Could you elaborate on what has happened in the last few weeks in ME/CFS/Fibro-World for the betterment of the people who deal with the d'ds?

    It seems I missed something...

    Thanks in advance,
  8. tansy

    tansy New Member

    Well said Bigmamma

    It's just as important to join and support the right organisation. In the UK it's the largest organisation (Action for ME and AYME) that have made our problems here worse. However, there are other good ME patient organisations in the UK (eg ME Association, 25% ME Group, the TYMES Trust, Invest in ME, RiME, ME Action UK) who are genuinely speaking and acting on our behalves but they need more support from the national patient community.

    Mezombie can point USers in the right direction and I hope those who reside in other countries can post which of their patient organisations are working hard to both educate and dispel the myths.

    tc, Tansy
  9. bigmama2

    bigmama2 New Member

    I am sooo glad to see these responses and read that some of us here ARE members of various advocacy groups!!!! I am also glad to see that many people read this post, and I hope that some of them will join a group (and/or do whatever they can to help our cause.)

    the reason I think that not many of us on here are members of these groups is because- well, it is just plain true. I have seen this issue come up before on this board, and there are never many responses. it is as if people don't care. Like I said before- If we don't stand up for ourselves.... who will? No one!!!! So we MUST do it.

    another reason to join- and i dont think i expressed this too well in original post--- is because if we band together and join these groups who keep working to put pressure on our government and the medical establishment, is that CFS will get "respect" as the serious, and life altering disease that it truly is.

    now- how many of us face a huge lack of understanding and support about CFS- from our friends, family members, society in general, and even most doctors???? how stressful and upsetting is this? very stressful and upsetting!!!! just look at the huge amounts of posts on this topic. again and again and again. this must change!!!!!!!!!!!!!!!!!!!!!

    of course the ultimate goal in joining these advocacy groups is so that effective treatments or a cure can be found. that will take a ton of money, and effort, and time. but something that could and should change SOON is the awareness of cfs as a legitimate, serious, life altering illness. that alone would make our lives less stressful. to have people understand that we are not lazy, crazy or just depressed, or just need to exercise. that we have an ILLNESS.


    yaaarrggghhhh!!!! ("Howard Dean scream") LOL


  10. bigmama2

    bigmama2 New Member

    still waiting to see more people on here tell me they are members of an advocacy group!!!!

    if you are not yet a member-- please consider joining one of the groups!!!!!!!!!!!!!!!!!!!!!!!!

  11. 2sic2mooov

    2sic2mooov New Member

    I have been on the internet more the past 2 weeks only bc my husband has brought a laptop home...otherwise had to go down to the dungeon (basement) to get on our pc. I must have missed a lot of info about something going down in the UK with their group? What happened?
  12. findmind

    findmind New Member

    Well, hate to be a spoiler re: CAA, but I have had ME/CFIDS for 18 years and for the first 10, I not only paid the $35, but sent in money for research.

    When they joined forces with the CDC, receiving millions (5M) in order to spread "awareness", then proceeded to spread the lies that CF (Chronic Fatigue...not Chronic Fatigue and Immune Dysfunction Syndrome, and especially not ME)is a common problem in the U.S. and that CBT and Graded Exercise can cure it, that was the end of my support for them.

    Their membership dropped because the people who have had this illness for 10-15-20-25 years and longer have read the research, the novels (osler's web by Hillary Johnson, etc.), and have realized how betrayed we have been by the CAA.

    Kim Cleary's recent rant at the IACFS/ME proved everything I am saying.

    Only the "newbies" here are now joining the CAA, and I feel so sorry for them because they are supporting a cause that has stabbed them in the back. When our drs. read what the CDC and the CAA say about CFS they parrot it to us, the patients, suggesting CBT AND GET and psychiaty, because the CDC gets read by the drs. and they truly and honestly believe what they are reading.

    To me, I want to send my money to true research (not phone calls to people asking them if they are tired), and that means the national cfids foundation (ncf-net.org). They are doing such cutting-edge and critical research with scientists from all over the world, and they are all volunteers, not making a penny off our donations. (Kim Cleary has made over $1,000,000 in salary in just the past ten years of her leadership and has nothing to show for it. So many long-term patients have let her know how they feel, she is beginning to feel the heat, but instead of doing the right thing, she employs Susan Vernon, who originally said CFIDS was a severely debilitating disease, worse than MS or cancer patients experience on a daily basis. This betrayal is unconscionable.

    The other groups mentioned here are not doing the research that the NCF is accomplishing, but they are at least raising their voices in order to raise awareness and educate; however, until and unless we actually DO something to hold the CDC and NIH accountable for the lies they are telling our doctors (like a class action lawsuit), we are doomed to failure on those fronts.

    Sorry to have to educate so many after so many years of the real truth being out there; we must stop being lazy, and actually start reading the real, scientific research and information from credible sources. The CAA is not one of them any longer. They started out right, then got greedy for keeping an organization going any way they could, forever earning my disrespect and dismay at how they have hurt our cause irreparably.

  13. phoenixcfs

    phoenixcfs New Member

    I'm going to have to disagree with findmind. I am not a newbie to this disease; I've had it over 30 years and I give to the CAA - $40 every month (they have a monthly payment plan).

    Its hard to know where to start. The CAA got the CDC to pay for the first media campaign that organization ever did - and some CFS 'advocates' crucified them for that. I just don't get it nor did I find the materials of the campaign offensive.

    The CAA was instrumental in uncovering the scandal at the CDC, in getting an NIH research program going, in creating a disability ruling specifically for CFS (rare occurrence), in getting a federal advisory board specifically on ME/CFS created (another rare occurrence), in keeping that board renewed every two years. They just mounted a successful $1,000,000 campaign for research and yes they got Suzanne Vernon on board - thank god! - who has turned out to be an absolute dynamo.

    Recently they called Bill Reeves and the CDC (basically called for his firing) and created a brand new educational program for doctors at Medscape using Dr. Bateman and other well known doctors. I think they're doing just fine.

    What has the NCF done? Badmouthed virtually every respectable ME/CFS researcher, tried to ruin one of our best researchers - Kenny De Meirleir - given out bad advice to patients (get the ciguatoxin test - why? Who knows?), etc., etc.

    I'll take the CAA any day.

  14. SpecialK82

    SpecialK82 New Member


    I don't know all the history of the CAA so I cannot comment on it, but I do thank you for your input and will take that under advisement.

    Regarding Susan Vernon, from her video on the CAA website she seems to be an advocate of our cause in everyway. She spoke of research done by the CDC that supports true physical differences between CFIDS and the general population including differences in our genes.

    I'm assuming that she has portrayed the CDC research accurately in her speech. Would you agree with that? If so, then why isn't this information disseminated to the doctors.

    I don't know the answers - I'm just looking for the truth. Where is the break-down in communication if the CDC does (now) agree that we have a debilitating disease??


  15. aftermath

    aftermath New Member


    This is the post of the year. I have made similar threads before that always sink to the bottom. I am determined to keep this one near the top.

    The budget for ME/CFS research in this country couldn't pay for the toilet paper at the AIDS, Cancer or MS labs. The only way this is going to change is if we put ORGANIZED pressure on our elected representatives.

    I know money is tight for most of us. Still, we spend thousands of dollars on supplements and doctor appointments--yet none of us get much improvement because the cold hard fact is that science currently has no clue as to what causes this illness.

    The only way we are going to change things is through the national organizations.

    There is no excuse for anyone who can afford it not to be a member of one of these organizations. If you are not part of the solution, you are part of the problem.

    Although which organization you contribute to is a matter of personal choice, I also vehemently disagree with findmind on the CAA.

    Without large numbers, we don't have a prayer in getting Congress to pay attention to us for more funding. More people diagnosed = more potential votes = greater chance that the elected reps listen. The goal of the publicity campaign was to try to increase membership numbers, thus giving them a better chance to put pressure on Congress.

    The "million dollars in salary over ten years" is misleading. It works out to $100,000/yr, which is hardly an extravagant CEO's salary. It is more inline with the salary of a nurse or a police officer (with minimal OT included) in a major metro area.

    If anything, the salary is low. Highly qualified people aren't going to do the job for free. And as phoenixcfs capably pointed out, they uncovered the scandal where the CDC diverted research money away from us. I think that the money was well spent.

    I have been sick 13 years and decided to become a member of the CAA this year after finding out just how dismal our research budget is.

    I hate to be a fatalist... But...

    Pick your major disease... AIDS, Cancer, MS, ALS, Lupus, Autism... The list goes on and on. ALL OF THEM HAVE RESEARCH BUDGETS OVER 10X WHAT IS BEING SPENT ON ME/CFS... AND THEY ARE NOT CLOSE TO A CURE.


    After facing this harsh reality last year, I decided to join the CAA. Hopefully some others on this forum will realize this soon as well.
  16. bigmama2

    bigmama2 New Member

    thanks for the post.

    i do not agree with all of what you said about the cfids assoc of america. but i do agree w some of it.the group is certainly not perfect, but i think they have done much more good than bad though. the awareness campaign could have and should have been better, but it still helped get awareness out to the public and medical community that cfs is a real illness.

    i think the important thing here is that all of us need to get involved in cfs advocacy. with which group is a personal choice. You prefer the National CFIDS Foundation. so for anyone who prefers that group, great, join them!!! My post was not specifically about joining any one particular group. It was a reminder to all here to get involved with the group of their choice, or get involved in advocacy in any other way possible.(write your lawmakers, etc) in other words- dont just whine and complain about how terrible everything is- get involved and work to make a difference.

    I am so happy to see anyone who is fighting for our cause and passionate about it (like you are.)

    I do have a question for you. you wrote--
    ***(Kim Cleary has made over $1,000,000 in salary in just the past ten years of her leadership and has nothing to show for it. So many long-term patients have let her know how they feel, she is beginning to feel the heat, but instead of doing the right thing, she employs Susan Vernon, who originally said CFIDS was a severely debilitating disease, worse than MS or cancer patients experience on a daily basis. This betrayal is unconscionable.***
    I dont understand- how is employing Susan Vernon, who says cfs is severely debilitating, a betrayal?????

    also, i agree with you that we (the patients) should read as much as possible about our illness, and the state of advocacy, and see what is going on w the cdc and the nih. another question- would we have any chance for success with a class action lawsuit? i have wondered about this. i am not a litigious type of person, but the anger i have felt over my lack of good medical care with this illness makes me want to sue.


  17. bigmama2

    bigmama2 New Member

    phoenix, good post, good info

    specialk- hope you keep involved!

    aftermath- im glad you liked my post. i have seen your excellent posts on the same topic and i am always so happy to see others who are trying to make a difference. yes, we will keep this bumped.

    this issue is so urgent. strength in numbers!!!!!!!!!!!!

    so glad to see a few more people willing to get involved.

  18. bakeman

    bakeman New Member

  19. gb66

    gb66 Well-Known Member

    I also have been a member of the CFIDS association for over 10 years.
    They are a great organization and send out some good information. It is, I think, $35.00 a year to joing. GB66