CDC delay - anyone else angry

Discussion in 'Fibromyalgia Main Forum' started by monkeykat, Nov 13, 2006.

  1. monkeykat

    monkeykat Member

    Hi,
    I have slow-onset CFS which was so severe 2 years ago that I was completely housebound, bedridden and I was suffering tremendously. I also have Fibromyalgia and Multiple Chemical Sensitivity. My life has felt like a living hell and I was abandoned by everyone in my life except for my husband when i was at my worst. I finally found help through alternative medicine which has been a major god-send to me although I've had to get in major debt to find relief from these illnesses.

    Although I'm really grateful that the CDC has finally recognized CFS as a REAL physical illness. It has brought up a lot of emotion in me. I feel pretty angry that they have ignored this illness for 50+ years and diverted over $13 million dollars in funding that was supposed to go for CFS research. Finally, someone in the CDC blew the whistle and they got caught. This just really ticks me off in a major way.

    If the CDC had bothered to acknowledge this illness 50 years ago, 40 years ago, 30 years ago, 20 years ago or even 10 years ago then we might have some answers by now.

    As it is, I wonder how many people have committed suicide and have lived a life that was an absolute living hell for numerous years with no goverment, family, friends, church, medical or other support b/c the d _ _ _ CDC ignored it?

    Does this anger anyone else? I guess I need to be a bit angry before I can be happy about this.

    Keep hope alive, Monkeykat
    [This Message was Edited on 11/14/2006]
  2. findmind

    findmind New Member

    I will never forgive those at the CDC who named this disease; never forgive them for making us out to be losers; for making us out NOW to not be able to cope with stress; for deceiving the patients, doctors and public about the possible seriousnes of the illness.

    I'll never forget all the suicides because of this disease (I'm a former ST leader and have heard of many all over the world).

    Angry; not anymore. I depend on the National Cfids Foundation (ncf-net.org) for my hope! They are doing astonishing research for us and I think they will find the answers very soon.

    Hang in there; anger hurts you...have hope for what is positive in the field of research and forget the CDCs crap!

    There's always hope!
    findmind
  3. monkeykat

    monkeykat Member


    Hi skeesix and findmind,


    Thanks for your responses. I guess I really needed to know that other people out there are ticked off too. I know that I cannot "let go" of something that I haven't faced head on. I really need to feel angry about this for a little while before I can feel happier about the sudden publicity and help that is coming our way.

    I need to feel really angry about many things:
    1) all of us who have committed suicide
    2) all of us who were abandoned, mocked, midjudged and mistreated by government, doctors, family, friends, church, etc.
    3) all of us who are in tremendous financial distress b/c we can not get SS disability and even for those who receive it, you are in tremendous financial distress b/c you probably had to wait 3-5 years.
    4) all of us who continue to suffer with daily torment and tremendous fear b/c we don't know what is happening to our bodies...
    5) and on top of our paralyzing fear, we suffer tremendous shame and humiliation b/c most people in our lives roll their eyes at us and tell us it's a somatization disorder.
    6) all of us who daily suffer tremendous physical, mental and emotional pain due to having a serious and debilitating illness and yet have little to NO support in life.
    7) all of us who have been so alone!!!

    Well, these are some of the things I feel really angry about. I just feel so angry about all the unnecessary suffering that has occured and continues to occur at the hands our of incompetant and uncaring government.

    However, I will work at forgiving the CDC as well all those who have abandoned, mistreated, rejected and mocked me while I was suffering so terribly.

    I will forgive others for my own sake b/c I will not let bitterness or anger destroy me.

    I choose to move forward and thank God for the work of the national CFIDS Foundation, Prohealth - Rich Carson, and all those who have looked out for us, advocated for us and cared about us.

    Once I let go of my anger, I will focus on the positive and let go of the past!!!

    Keeping hope alive,
    Monkeykat
  4. foxglove9922

    foxglove9922 New Member

    Hi Monkeykat,

    I haven't posted in a long time but your post really hit home for me. Why now is the CDC taking such a big step to go public with CFS and even try to mimic some of the research going on in Scotland and England? The timing just doesn't set right with me.

    I too feel horrible about the people who have taken their lives rather than deal with this horrific illness.

    Well said Monkeyrat,,,,,,I too am angry today.

    Fortunately, I do ocassionally have some good days and try to find some joy in life. Unfortunately, as my finances dwindle, so has my quality of life. I can no longer afford ProBoost, Immoprop, CoQ10 and many other supplements that seemed to help.........I'm depleted financially, emotionally, and physically........hoping for a good day soon.

    best wishes,

    foxglove
  5. monkeykat

    monkeykat Member

    Hi Foxglove,

    Thank you for your response.

    Yes, I have wondered the same thing about "why now"?

    All I know is that the CDC ignored this illness for over 50 years when there where outbreaks of it in the 1950's. They also curtailed over 13 million dollars in research funding (that was supposed to go for researching CFS) and used it to research other diseases. Someone in the CDC blew the whistle and they got caught. So, they got caught and now they are finally doing some research. Gee, they care so much about us, don't they?

    It makes me feel like there has been some kind of cover-up for many years? I wonder if they knew something all along that they are hiding? Why ignore such a debilitating illness??? Why divert funding so it cannot be researched????

    Like you, I have spent a lot of money on supplements and alternative treatments when doctors were only making me much worse with the few treatments they did offer.

    I can no longer spend as much on supplements and I cannot cook like Dale Figtree suggests, I wish I had the energy to do so. I use all my energy to try to make salads for lunch and dinner but I'm unable to juice.

    It's just really hard trying to find ways to heal with little to no support or help in life. I'm so sorry that you cannot afford the supplements you need. I am starting to cut down as well and cannot continue all this spending on credit cards as they are maxing out and I haven't been able to get social security.

    It has taken 2 years of really hard work and lots of trips to a naturopath who has worked small miracles in decreasing my severe pain, migraines, GI problems, multiple chemical sensitivity, numerous infectious agents/parasites and numerous allergies...which all left me housebound and bedridden. She has gotten me to a point that I at least function like an 85-90 year old on my best days. This at least makes me happy that I can function that well at times.

    I am also happy on these good days and try to find some joy in life. But many days, I am weary b/c I am also depleted financially, emotionally, and physically........hoping for better days ahead as well...

    Keeping hope alive,
    Monkeykat
  6. monkeykat

    monkeykat Member

    Hi skeesix,

    I need to try to watch the CDC press release. I've been too emotionally upset at the CDC to watch those hypocrites. But I need to do that.

    I didn't realize that only 40,000 people have MS. Wow! Wow!!!! I just can't believe that! And they've completely ignored and mocked us for all these years.

    I agree!!!! Thank god for the NCF - the only bright spot in this whole mess.

    Keep hope alive, Monkeykat
  7. quilp

    quilp New Member

    The reason MonkeyKat, is very simple.......those at CDC just didn't care. That is why we have not found an answer to this illness in the 21st century.
    We have a well known celebrity in this country who admitted to not believing in the illness 'M.E.' Trust me all that changed when her daughter became ill, with, yes you've guessed it M.E. Television interviews, charity functions, press releases, you name it she has done it.
  8. balletdancer74

    balletdancer74 New Member

    Hi Monkeykat,

    I'm also livid that the CDC acts like they are making such strides when it was THEIR fault for our predicament in the first place! As if the name "Chronic 'Fatigue' Syndrome" isn't misleading, inaccurate and insulting enough, we have to deal with the ridicule of both the medical and general community.

    Yes, I'm "bitter," but to get too angry will just aggravate my already existing 24/7 head pain. lol

    I'm what's called an "essential volunteer" for the NCF - G-d bless that non-profit group!! No one there gets paid unlike the CFIDS Association of America which, by the way, was mixed up a bit in the scandal of the money that was supposed to be allocated to "CFS/M.E." research by the CDC. Seems the money slipped under the table...and maybe someone got a slap on the wrist - that's it. Who knows...a bit of a mystery. hm...

    Japan has or had the highest rate of CFS/M.E. in the world and even has a Ministry of CFS like other countries have a Ministry of Defense, etc. They do a lot of research too, but I've found that the NCF is focusing more on it. Bravo to them and bravo to this site for giving us the most up to date info and support! :)

    Oh, Fox News had a segment w/ Dr. Rosenfeld last week (I need to remember to post the link) stating that "CFS" (actually, he said "Chronic fatigue" which annoyed me beyond belief as those are just an adjective and noun - a symptom - not an illness. Seems almost every illness involves "chronic fatigue.") is a REAL disease and not a mental illness.

    While I like Fox News a lot and was "pleased" to see a segment stating that we're not all hypochondriacs or psychosomatic, I'm writing a letter to clarify a few skewed "facts."

    I'm on it! :)

    Keep the faith...we'll get there...I'm 32 and have had this crap along with FM/MPS, small pituitary adenoma, etc. for too many years to even WANT to remember. lol

    Hugs,
    LB32 (Leeza)
  9. monkeykat

    monkeykat Member

    Hi quilp & Balletdancer74

    I think it's healthy to get our anger out and then move on. I'm glad you both shared.

    I guess I don't like "pretending" and it makes me mad when people who are at fault pretend like they "care" now. That just really ticks me off.

    I'm not sure who the well known celebrity is who's daughter became ill with CFS/ME? I'm glad that someone famous can at least advocate for us all.

    I also did not know that the CFIDS Assoc of America was mixed up in the scandal with the CDC. That's news to me. Ugh! That's just really pathetic. People who we are trusting in...betraying us. Thank God the for volunteers at NCF. Maybe someday I'll be well enough to volunteer for NCF. I hope so.

    I'm glad you write letters/emails to others. It's important for all of us to do our share. I try to write thank you's as much as I can b/c it's so important for our voices to be heard.

    Hugs, Monkeykat

  10. findmind

    findmind New Member

    I don't think the CFIDS AofA was mixed up in the CDC scandal. I don't think they had any accountability or control over the Congressionally approved money.

    However, I do believe there are too many "well" people there; and they do not really understand the nature of this illness.

    I supported them for 10 years; I stopped when they validated graded exercise as good for PWCS (Persons with CFS). Their Founder/CEO resigned. He was a PWC and I don't think I've ever heard the story as to why he quit. Does anyone know?

    Their big, glossy quarterly uses monies that could be better spent on research, I think.

    I have been vocal here regarding the "branding" of the name CFS. I pray Rich Carson is successful in helping them get the name changed.

    I am sorry Rich has aligned himself with the CAA instead of the NCF; however, all the good he has done this community outweighs even that, in my mind.

    He is constantly find therapies that really help us; there is no way to thank him enough for that dedication.

    I say forget the CAA and CDC and search and try ways to help yourself until more tests, answers and treatments are available. Then we can truly forget!

    There's always hope!
    findmind


  11. Gothbubbles

    Gothbubbles New Member

    I'm angry too.

    Today my doctor (who has been a good GP to me) actually said to me that the only treatment proven to help CFS is cognitive behavioral therapy! He's so behind in the times!

    I'm surprised he didn't mention graded exersize lol.

    It's this kind of ignorance by well-meaning, quality doctors that really upsets me the most. My doctor actually cares, and read up on stuff, and that's the garbage the medical industry is feeding him. He's an old guy, so he doesn't use the internet.

    If the cdc was more on the ball, I don't believe this would happen. I feel the worst for people who DON'T have good-hearted docs like me. Mine was just ignorant. Some docs out there truly believe their patients are nuts!

    This whole disease beaurocracy infuriates me. If only we weren't so sick, we could stand up for ourselves and get something done about it. I honestly thing that's why the heels are dragging, because people with CFS suffer in silence, seclusion, and aloneness.
  12. monkeykat

    monkeykat Member

    Hi findmind & gothbubbles,

    Findmind - I had not heard anything about the CFIDS A of A being involved in the CDC scandal so I'm glad that you haven't heard that either. Thanks also for letting me know more about CFIDS A of A and what is going on there.

    I am extremely grateful to Rich Carson as well. He feels like a "life line" to me. His advocacy for us gives me hope when I feel hopeless.

    I also believe we need to find ways to help ourselves and that's what I've been doing for many years now. I'm fortunate to have a husband though and I worry about single people who have absolutely no one and no help and can't find ways themselves b/c they are so debilitated with this illness. I would have died or had to kill myself if I did't have my husband b/c everyone else abandoned me.

    Hi gothbubbles -
    Ugh! Ouch! Cognitive behavioral therapy! I'm surprised that none of us have gone off and strangled or killed someone by now. Yes, I'm surprised he didn't mention graded exercise as well.

    I also have a good-hearted GP but in response to my telling him about how poorly I function each day, he says things like, "don't you think you're being too hard on yourself" and acts like if I wasn't being hard on myself then I could function better. Yeesh!!!!

    Yes, you said it, "IF WE WEREN'T SO SICK THEN WE COULD STAND UP FOR OURSELVES AND GET SOMETHING DONE ABOUT IT". As it is, I feel so wiped out right now that going and getting something to eat for breakfast seems like climbing a small mountain.

    Keep hope alive, Monkeykat


  13. findmind

    findmind New Member

    Yes, my best friend with CFS is single and she has the most horrible days! She has a big house she has to take care of in case one of her parents pass away; she may have to be the caretaker for the other one, and she is very sick.

    You know, I would commit to a day of activism in Wash. DC, the way the AIDS patients did, even if it killed me, and I mean that literally.

    There is no way to get even 100 of us, much less 10,000 of us able to be there at the same time! The CAA does have their lobbyist and informational visits there, but I think only a full DAY of patients lying around in lounge chairs and protesting would be far better.

    The HIV patients did it, because they were not as sick as we are. CBT and graded exercise are insane, even tho' CBT can help us all cope better. Can you imagine all one million of us asking for it? They wouldn't have enough medical people willing and able and having the time book all the appointments.

    Hummmm, maybe we should all do that! Then they would see the distress of patients on a regular basis and maybe just some of those patients would "click" with their behaviorists and voila! understanding and support and awareness.

    Gotta go make my appointment; however, my shrink (for meds) has already known me for 5 years and she really "knows" now.

    findmind

  14. spacee

    spacee Member

    When I first found this site and started posted I realized how much pent up anger I had for most of the reasons you have stated. I mean I couldn't write anything without being so angry. It was very healing for me.

    The person that I will never forgive is Dr. Steven Strauss of the NIH. I used to have an article from the 1980's where he issued a press release stating that CFS was just depression.

    And a press release from the NIH is just like being published in JAMA...the bible of doctors. Once it is out, it is H**l to get it turned around.

    Also, it had been discovered about the time he was coming through school that rats if put under stress would have an immune response. Boy, that seem to be his ticket to becoming internationally known and he did everything in his power to divert National Institutes of Health research grants to doctors he had persuaded to join his cause.

    Anyone who can convince other doctors that a fever in the child of a parent with CFS is *learned*, should be removed from his position. There was a right in years ago to have him removed but it didn't work.

    So, yes, I agree, we were set back by decades because of this group of people.

    Spacee
  15. Gothbubbles

    Gothbubbles New Member

    I agree with you, Mccourtney.

    If you ever want to know what's going on or why, just look for whose hand the money is in.

    Whose hand is the money in now?

    Whoever can find a drug and market it to the huge number of DESPERATELY ILL people who will try anything to get their life back.

    I think now they're starting to see that after looking at how big the alternative health industry has become. I think they're jealous that they are losing money to these guys! lol
  16. monkeykat

    monkeykat Member

    Hi,
    Great posts!

    I am really learning a lot from all of you.

    I have been sending all the recent CDC info and new publicity to my counselor/psychologist and he finally, really, believes me. He told me for the first time today that "of course, people with CFS would get depressed and anxious b/c look at all we have to deal with".

    You know, if ONE MILLION of us can affect one person in the medical profession to actually believe us and support us than that is ONE MILLION health professionals.

    I was so excited that I know have one other person who really beleives me and will truly give me the emotional support I need to deal with this physical illness.

    findmind - I am so sorry for your friend. i can't imagine the stress she must be feeling which only makes us worse.

    my husband was diagnosed with a brain tumor when I was at my worst. i had no one else in life as everyone else abandoned me and it was a really scary time. My husband is starting to do better. I will say a prayer for your friend today as I partly understand her stress level.

    Yes, now that I'm not housebound. I would commit a day of activism in Washington, DC too. It wouldn't kill me but I would suffer for a prolonged period of time but it would be worth it. And NO I couldn't stand and protest...I'd have to sit. But I agree, so many of us are so debilated and financially strapped that we don't have the physical or financial resources as a group to do that.

    It's interesting that you note that HIV patients were able to be activists for themselves but we cannot b/c we are more ill than they are as a group. It's an endless cycle of frustration b/c we cannot speak out for ourselves.

    Yes, i would love to see 1 million people with CFS go get CBT and overload the medical care system. Although, psychologists/psychiatrists would love it to as it's more business for them. That's why they are adamant that we are depressed and need anti-depressant. We a large group of people to make money off of.


    hi spacee -

    I can relate to your anger. It helps to get it out. I was really angry for many years and some of the anger is resolving this year. I have a strong sense of justice so I tend to get pretty angry about all injustice that I see, not only CFS.

    Thanks for letting me know about Dr. Steven Strauss of the NIH. I didn't know how avidly he worked against us. No wonder why all medical professionals roll their eyes and believe we are just depressed.

    hi mcourtney,
    You are awesome too!!! yes, it is ME but ME doesn't get much respect either but it would be less embarrasing to say I had ME rather than CFS.

    I agree so much with what you said about everything coming down to $$$$$$$$$$$$$$$$$$. I didn't realize that there are new drugs finally coming out for us. That answers the questions of "WHY NOW".

    Yes, Why now? Why are they all of a sudden giving CFS patients publicity. Why???? Money can be made off of us now and we can be used a guinea pigs for testing new drugs that will probably further debilitate most of us who try them. Well, I have multiple chemical sensitivity so new drugs don't mean much to me except that they may completely destroy my already poor ability to function.

    I also have tremendous respect for each of you and the rest of all the real sufferers of this disease. Let's keep fighting and advocating for ourselves:)


    Hi gothbubbles,

    Yes! I agree with what you said, "Whose hand is the money in now? Whoever can find a drug and market it to the huge number of DESPERATELY ILL people who will try anything to get their life back." SO TRUE!!!

    I also agree with what you said about, "I think now they're starting to see that after looking at how big the alternative health industry has become. I think they're jealous that they are losing money to these guys!"

    of course, they are jealous and want that money but it also shames them that many of us are doing alternative treatments and they are what is giving us our life back, at least in part.

    Take care and thanks for all the great posts!!!

    Keeping hope alive, Monkeykat
  17. spacee

    spacee Member

    I want to tell you the REAL reason the FDA delayed the ampligen. Be prepared.

    I live in a fairly rural area and, yet, have gotten such a eye witness to alot of what as gone on. I have met personally with Steven Strauss, MD. at at the NIH. I was in a Twin Study of CFS patients at the University of Washingon (state). And if you looked at the background of the people in charge of the study, they had a connection to Dr. Strauss.

    The really odd thing was that I had dinner with some friends who had a guest from Miami. He happened to be the owner of Hemispherx, the company that developed Ampilgen. Yes, I had dinner with the owner of Ampligen. At that time the study had been taken to Belgium.

    Why? The first trials in the US had gone spectacularly. But the FDA for some unknown reason delayed the next round of trials. The patients who had come out of wheelchairs and other patients and people who had invested their money in Ampligen stock BOMBARDED the FDA petitioning for the trials to resume. The owner told me himself when that happened, the FDA BURIED the trials. The FDA was NOT going to allow any group to tell them what they should or should not do. He named other meds that the FDA had done that to also. So, that ended the studies here and the company took it to Belgium.

    So, YES, it does have alot to do with money, but it also has alot to do with POWER. Or I might put it greed of their own egos.

    Isn't it just the craziest thing ever?

    Well, prayers to all of you. We have not had anyone with brain tumors or otherwise. That has to be the worst.

    Spacee


  18. monkeykat

    monkeykat Member

    Hi Spacee,
    Thanks so much for sharing about the FDA stopping further trials of ampligen in the US.

    That's the FDA. Kevin Trudeau who wrote that book, "Natural Cures they don't want you to know about" has also butted heads big-time with the FDA. so it's no surprise hearing the FDA did that.

    Lot's going on that has nothing to do with helping us get our health back.
    Keep hope alive, Monkeykat