CFS mentioned on Today Show

Discussion in 'Fibromyalgia Main Forum' started by SpecialK82, Jul 9, 2009.

  1. SpecialK82

    SpecialK82 New Member

    CFS was mentioned on Dr. Nancy Synderman's segment this morning "Why women feel tired"

    She discussed all the usual suspects for feeling tired - anemia, thyroid problems, sleep apnea, etc., and CFS was mentioned at the end of the piece.

    She said that some doctors don't believe it's real but that she does, and she said that some people have had overwhelming viral infections and never really come out of it - something has happened to the immune system.

    Although it was only briefly discussed, I was really excited to see this on mainstream media.

    The word is getting out!!

  2. 3gs

    3gs New Member

    Finally! She is also very respect . Maybe we could all send e-mails to the show Mystery Diagnosis on TLC and get them to a segment on this?

  3. Mikie

    Mikie Moderator

    The more docs who believe in it, and the more they mention that, the more credibility we have. We know it's real. Now, if only the medical world would get up to speed...

    Thanks for mentioning this.

    Love, Mikie
  4. frickly

    frickly New Member

    I have not watched her show but I did just email her to say thanks for mentioning CFS. If we all emailed her she might consider doing a show on it. It's worth a try.
  5. SpecialK82

    SpecialK82 New Member

    frickly/frenchtulip - great idea to email her I will do that too, I did not realize that she had her own show on MSNBC :)

    Hi Kelly - great to hear from you!

    It sounds like you have been busy chasing down this nasty stuff. I didn't realize that you had started on Lyme treatment, I'm hoping the herx-like symptoms are a great sign. You are brave to try antibiotics - are you able to get any yeast meds while on it? If I remember correctly, this doctor will prescribe it for you, is that right?

    I have been tested for Lyme a few times, most recently I know Dr. Lerner had done it, but I don't know if I am really having the correct tests done. They have all shown negative.

    How are the vitamin C IV's working out - can you tell a difference? I have thought of these as well, but have not tried them.

    I have been going continually downhill, and actually of late just feel like I'm dying. The exhaustion has gotten so bad, I have a hard time even having a conversation. My ability to concentrate and think/speak clearly, has diminished and is alarming me on a daily basis.

    I have been going back through the mainstream docs here. My GP now says she does think I have CFS, but doesn't have any help for me. She referred me to an infectious disease doc per my request about EBV but the doc said that my high titers were just showing a robust response to a past infection. I saw a new rhuemy who was surprised at how weak I was and referred me to a neurologist to rule out metabolic myopathy.

    The neuro was very nice and concerned, he ran many tests including another EMG but everything showed normal - he decided I was weak because I was de-conditioned. Ughh!
    He sent me to a sleep lab and told me to do graded-exercise and come back in a few months.
    So, I am nowhere :(

    I am reaching a new level of desperation, I would love to try Ampligen if approved - I have been watching everyday.

    Love, Kristina

  6. jasminetee

    jasminetee Member

    That's good that Dr. Nancy believes in CFS and mentioned it. I'd like to email her and ask her to do a video on ME/CFS too. Does anyone know what her email is?
  7. frickly

    frickly New Member

    I went to the Dr. Nancy show website. If you scroll down to the bottom, in the middle, it asks if you have a question for Dr. Nancy to click here.
  8. chrissy12

    chrissy12 New Member

    I also wrote a letter to the Today show thanking them for airing this important information. Hopefully, they can get on board, too, along with Dr. Nancy.

    Thanks for sharing this with us. I don't get up that early to know what's on the Today Show. Good Job!!!
  9. AuntTammie

    AuntTammie New Member

    I just wrote to them, too....I thanked them and mentioned that it would be great if they could have more about CFS in the future, esp more regarding the physical and neurological impacts and the current research proving the biomedical aspects of it
  10. SpecialK82

    SpecialK82 New Member

    this is soo great!

    Writing different places - the today show, Nancy directly, that's terrific - I don't think it looks like an organized campaign that way!

    I'm starting to think about what other shows we could write and ask them to do a piece. Pity that Oprah is not interested, she would pack a huge punch. If I recall correctly, people have tried writing Dr. Oz directly as well.

    What if we asked the CFIDS Association to work on persuading mainstream media for a segment - like a Dr. Phil, or the evening news? I know Dr. Phil is mainly psychological but I have seen him work on physical problems at times with a guest doctor. He can always discuss the mental issues associated with having an invisible illness. (Maybe I'm grasping at straws with him).

    Many of us here are members of CFIDS Association - maybe we can start a letter writing campaign to them and let them know specifically what we want.

    We need visibility to a wide audience - I am talking TV or something equal!! If the public is informed, more people will suspect that they have CFS and ask their docs, docs will have to educate themselves, hopefully it would put more pressure on the CDC.

    If the public understands our illness, our lives will improve, disability would be easier to get, drug companies would get interested as more PWC's are identified.

    What do you guys think - I'm getting really fired up :)

  11. SpecialK82

    SpecialK82 New Member

    Hi frenchtulip,

    It's a great idea to post in CFIDS Ass'n Facebook - I have never used Facebook so I don't know what could be wrong.

    I guess the "Discussion section" is part of Facebook as well? Others could see that don't come to this board, that would be wonderful.

    Thanks for your ideas!


  12. frickly

    frickly New Member

    To whom it may concern,

    I am a married, 38 year old mother of three children and I was diagnosed with Chronic Fatigue Syndrome a few months ago. Chronic Fatigue is rarely mentioned in the news and, as Dr. Snyderman mentioned, is not believed to be a real disease by many doctors. I appreciate Dr. Snyderman briefly discussing CFS and stating that she does believe it is real, possibly viral and affects the immune system. Chronic Fatigue is a devastating illness that can change a person’s life over night. Chronic Fatigue Syndrome is a biological illness that can affect every organ in the body and causes a variety of symptoms including, pain, migrains, muscle fatigue, numbness and cognitive changes just to name a few. These symptoms are debilitating for most people with CFS.

    For many, the symptoms are almost identical to multiple sclerosis yet we are ignored and told we just need antidepressants and a good exercise program. This has certainly been the case for me as it took seven years to find a doctor that believed I was sick as is the case for most people with this disease. My current doctor was the first to do the right tests which proved I was, indeed, very ill. She started treating me for a severe mycoplasmal infection which decreased my pain by about 80%. She also put me on glutathione/ATP injections which gave my muscles the energy they needed to move. This is not a cure but has enabled me to have a life again. Before this, I was stuck in my chair most of the day in terrible pain and too weak to even cook dinner.

    We have made tremendous progress in researching this disease in the last couple of years, without the help of the government or Center for disease control. This disease needs more media attention and sufferers need to be understood by the medical community and the public, as having a real disease that is progressive and debilitating. Any stories in the future about CFS would help to validate our disease and encourage the medical community to get involved in finding a cure. I also hope that educating the public about this illness will save others from the years of pain, humiliation and isolation that I and most patients must endure when trying to find a cause for their symptoms.


    [This Message was Edited on 07/10/2009]
  13. SpecialK82

    SpecialK82 New Member

    frickly - Bravo!

    You did an awesome job. Thank you for taking the time and the energy to put together such a well thought out letter, I'm sure this was a drain for you - we all appreciate your efforts!!

    Your story is intriguing and has brought up a few questions for me if you don't mind. Can you tell me what type of doc diagnosed you, and what type of tests she did? Congratulations on finding the mycoplasmal infection and getting it treated - I so happy for you that you found something that helped :)

    I'm really interested in the glutathione/ATP injections - how much has it helped you improve? I have not heard of these, and my muscles are in desperate need. Are you going to an alt med doc for these or how do you get it?

    Thanks in advance, if you have any energy left.

  14. jasminetee

    jasminetee Member

    Thanks y'all. I emailed Dr. Nancy and The Today Show.

    I don't think we want Dr. Phil covering CFS as I believe he will try to psychologize it. I trust Dr. Nancy a lot more.

    I also don't trust Oprah at all. She's made us look like whiners on one of her shows before.

    [This Message was Edited on 07/11/2009]
  15. frickly

    frickly New Member

    I am so mad. I just typed a long message to you and hit submit and it disapeared. I am going to get some coffee and try again in a little while.
  16. Mikie

    Mikie Moderator

    Especially on a new website, highlight and copy the text. That way, if anything goes wrong, all you have to do is paste it back in a new message.

    Love, Mikie
  17. frickly

    frickly New Member

    Mikie, thanks, I "almost" always copy my text before I submit.

    SpecialK, My doctor is an internist with a special interest in CFS, Fibro, GWI and AIDS. She has been treating her patients with glutithione/ATP injections for a number of years with good results. My injections started working the day after my sixth injection (six weeks). I went from sitting in my chair all day and being unable to walk up my stairs to having the energy that I need to do most thing that I want. I am not cured, I still am not back at the gym as I used to cycle four or five days per week. I still have bad days and can overdo it but it has moved me back to the land of the living. My doctor uses the combination of glutithione and ATP and I am unsure how significant this combination is and if I would have gotten the same results with glutithione alone. As far as I know, she is the only doctor using this combination. Mainstream doctors do not use this treatment and you would have to find someone who specializes in CFS and uses this therapy. That being said, I know that this is a very difficult task.

    If you are interested in this treatment and are unable to find a doctor that can test for and treat you for glutithione depletion then I would suggest finding a Defeat Autism Now DAN! doctor. These doctors regularly treat with IV glutithione and the treatment for autism is almost identical to my treatment for CFS and they have treated many people with chronic illness such as ours. They do beleive that there is a connection between autism and CFS and many parents of these children have fibro, CFS and other autoimmune diseases (the apple dosn't fall far from the tree). I plan on making an appointment with my sons doctor in the near future to get more help in supplementation and to be tested for heavy metal toxicity. You can find a doctor through Jenny McCarthys website.

    The tests performed by my doctor were many including HHV-6, lyme, cyclic AMP, candidia and mycoplamal bacteria along with an MRI among others. She was the first doctor that finally ruled out all other possible causes so that I was able to accept the CFS diagnosis. I think that if someone has alot of pain as I did that it is important to be tested for a mycoplasmal infection as it's symptoms can mimic those of multiple sclerosis and RA. This was certainly the case for me and after a severe herx reaction my pain was decreased by about 80%. There are many types of this bacteria but the species most often found in CFS, fibro and GWI are M. fermentans, M. hominis, M. penetrans and M. pneumoniae.

    If you want to learn more about my doctors treatment for CFS you can google Patricia Salvato. I hope you are able to find some releif for your symptoms as I can understand feeling desperate as I felt this way before finding my doctor. I am still searching for a way to get my body to make its own glutithione and am taking many supplements which I beleive are helping. Only time will tell.

    Take care,

    [This Message was Edited on 07/12/2009]
    [This Message was Edited on 07/12/2009]
  18. SpecialK82

    SpecialK82 New Member

    Thank you so much for taking the energy to post this information again! What a complete and thoughtful response.

    I googled your doctor and was praying she was in my area as she sounds like a Godsend - but unfortunately not, as I live in Cincinnati, OH. As you guessed, I have not been able to find any CFS doc around here but your advice on finding a DAN doctor is a gem!

    That has given me some hope now, and I really appreciate it :)

    I am so happy for you that you have really found good treatments - treatments that are making a big difference to your everyday life. You have really perservered at getting the right kind of help, and you should be very proud of yourself. I love to hear good stories like yours, they are few and far between.

    Are you by chance taking supplements that Rich Van K suggests? If so, does your doctor believe in the methylation block? I have tried to find a doc that would support me in his protocal but have had no luck.

    Your email is so informative and explains everything so well, I think I might print it off and bring it to my doctor.

    I am going to research DAN docs in my area right now - I'm so excited that I have a new avenue to pursue.

    Hugs to you,
  19. frickly

    frickly New Member

    "Are you by chance taking supplements that Rich Van K suggests? If so, does your doctor believe in the methylation block? I have tried to find a doc that would support me in his protocal but have had no luck."

    Dr. Salvato does beleive in the methylation cycle block theory and treats her patients accordingly. On my first visit I was given a description of this theory by Rich Van K. My treatment is based on the research done by Rich, Amy Yasko and DAN! They all suggest simular supplements to support the methylation cycle. I have also read some of Dr. Jacob Teitlebaums web site and use a couple of supplements he suggests. I was also unable to find a doctor to help with supplementation so I have developed my own treatment. As I said before, I would like to make an appointment with my sons DAN! doctor because they beleive strongly in supplementation and can help direct me. At some point, if I feel my supplements are not leading me in the right direction, I may try Rich's protocol. Although it would be nice to have a doctor to support us it is not always possible. If your interested in the methylation cycle block theory then you can try Rich's protocol on your own. I think it we wait around for a doctor to help us that we may never get well.

    I am glad you are excited about the DAN docs. I beleive that this is a good resource for us that is not used enough. I alway wonder how someone will react if I suggest this. If you have not researched this area then it is difficult to understand how autism and CFS could possible have any kind of connection. However, this connection and my improvements through supplementation is what led me to DAN! in hopes of helping my son. I hope that one day he will not have to take all the prescription medication that he has had to take since he was five. I beleive we are starting to see some changes.

    Take care,
  20. SpecialK82

    SpecialK82 New Member

    Dr. Salvato sounds so great, I'm glad you have such a good doctor by your side. May I ask what type of doctor your son is using? Are you just going to a pediatrician or is there a specialist for autism?

    You have done well by your son, researching all these avenues, I'm sure it must be frustrating and scary to say the least, and if you are not well, it's a real challenge!! How wonderful it would be if the same treatment could help you both. How long has he been following the DAN protocal? From the website, it sounds like some people have seen great improvement, one said that their child was totally cured!

    Have you eliminated diary or wheat from your diet? If so, do you feel that it has helped?