1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
AVIVA Semi-Finals: National ME/FM Action Network is competing for $100,000
The National ME/FM Action Network in Canada is competing for $100,000 for biomedical research of ME and FM in the Aviva Community Fund contest. With thanks to all who helped, they made it through the first round of voting into the Semi-Finals.
Discuss the article on the Forums.

Dateline show

Discussion in 'Other Health News and Research' started by Frickly, Aug 27, 2009.

  1. Frickly

    Frickly Senior Member

    Messages:
    1,046
    Likes:
    35
    Texas
    The clinic, Thoughtful House", I take my son to for his autism, OCD and Tourettes will have a segment on "The Today Show" tomorrow morning. "Dateline" with Matt Lauer will also do an hour long segment on Sunday night about Andrew Wakefield who founded this clinic. I am hoping that it will be a fair report as there is some controversy surrounding this doctor. I thought some of you might be interested as I beleive that autism and CFS have much in common and both groups are fighting a simular fight with the "powers that be".
     
  2. August59

    August59 Daughters High School Graduation

    Messages:
    1,480
    Likes:
    407
    Upstate SC, USA
    Thank you - I would be very interested in seeing it and very much do hope it turns into a good show. Wishing you and your son the best!!!!! oh yeah and the doc too!!!!!!!!!!
     
  3. Wayne

    Wayne Senior Member

    Messages:
    2,221
    Likes:
    1,371
    Ashland, Oregon
    Hi Frickly,

    Thanks much for mentioning this. I'm always interested in watching these types of segments, and just programmed my DVR to record it tomorrow morning. I hope they do a good job! :)

    Wayne
     
  4. Frickly

    Frickly Senior Member

    Messages:
    1,046
    Likes:
    35
    Texas
    Need to vent

    Well the show last night was a bit one sided. There was a lot of important info that I think they left out. One of the most important, in my mind, was the fact that they did not even mention the Hanna Polling case. In this case the federal program intended to compensate victims of injuries caused by vaccines concluded last November that Hannah Poling's underlying illness (mitochondrial disorder) that had predisposed her to symptoms of autism was "significantly aggravated" by the vaccinations she received as a toddler and that her family should therefore be compensated. I think the possibility that some of our children with underlying conditions could be harmed by too many vaccinations before the brain is completely formed is an issue that should be looked at very closely. Sacraficing the health of these children for the good of the whole is not acceptable in my mind.

    The other issue brought up in the show that irritated me is the thought that the parents of these children are so desperate to help their children that they would believe anyone who offered some hope. Personally, I knew nothing about Dr. Wakefield or Jenny McCarthy. While searching for a way to treat my own illness I came upon many research papers that discussed the similarities between my illness and autism. Also, I found that the theory behind the treatment I am on is the same as the treatment provided at Thoughtful House and through other DAN! Doctors. I thought this was very interesting and suggested a possible genetic disorder. I do not believe these parents are blindly following any doctor and, in fact, many have a distrust of doctors for obvious reasons.

    Another interesting note is the fact that Dr. Offit who represented (the other side)of the debate on dateline shares the patent on the Rotavirus vaccine that was in development by Merck and lists a $350,000 grant from Merck for Rotavirus vaccine development. He is also listed as a consultant to Merck. Dr. Offit has made over 30 million dollars on this vaccine and serves on two influential advisory committees that make recommendations on vaccine policy.”

    Irritating...
     
  5. Wayne

    Wayne Senior Member

    Messages:
    2,221
    Likes:
    1,371
    Ashland, Oregon
    Frickly - Dateline Autism Segment

    Hi Frickly,

    Thanks much for your review of this episode. I recorded it but have not yet watched it. Not sure if I will after reading your review. I can see and understand how much this subject matter means to you and am sorry this show ended up being such a frustrating experience for you.

    I thought the PH thread (that got deleted) on the connection between ME/CFS and autism had many remarkable and insightful comments. Sounds like there was more relevant information in that particular thread than in the whole Dateline segment. Yes, very frustrating how medical science, with all its different vested interests, moves along in somewhat haphazard fashion.

    All the Best, Wayne
     
  6. Frickly

    Frickly Senior Member

    Messages:
    1,046
    Likes:
    35
    Texas
    Oh..the tangled webs we weave...

    I really didn't expect much but it is still frustrating that the whole story did not come out.
     
  7. Wayne

    Wayne Senior Member

    Messages:
    2,221
    Likes:
    1,371
    Ashland, Oregon
    DAN! Doctors

    Hi Frickly,

    Well, I watched it, and I'm glad I did. Gives me some historical perspective on the autism debate. Personally, I found Dr. Wakefield far more credible than either the investigative journalist or Dr. Offit.

    When Dr. Wakefield mentioned at the end that a large number of doctors share his persepctives, I was hoping they would at least say a few words about the whole DAN! (Defeat Autism Now) movement. A huge omission in my opinion.

    Wayne
     
  8. Frickly

    Frickly Senior Member

    Messages:
    1,046
    Likes:
    35
    Texas
    Wayne,

    I am glad you watched it as I beleive this is an important issue for all of us. I hope no one takes offense to my talk regarding autism but, in my mind, CFS and autism are so closley linked that it is difficult for me to discuss one without the other. This is a controversial issue and for those on this site that do not agree with the DAN! treatment or their thoughts on vaccines, I thank you for letting me vent and not feeling like you need to prove me wrong. It does help to have a safe place to discuss these type of issues. For anyone interested, Dr. Wakefield wrote a response to the Dateline show on the following link.

    Take care,

    http://www.thoughtfulhouse.org/newsletters/2009-08b.pdf
     
  9. Wayne

    Wayne Senior Member

    Messages:
    2,221
    Likes:
    1,371
    Ashland, Oregon
    Frickly - Autism Research

    Hi Frickly,

    Thanks much for posting the link to Dr. Wakefield's response. I found it to be really interesting. Unfortunately, it irks me even more how much relevant information NBC and Matt Lauer left out of this really important segment.

    One thing that did catch my attention was that $122M is being invested in autism research. I too think there are close correlations between autism and ME, and feel this research could eventually be helpful for those with either of these conditions.

    Thanks for all your posting here. It has helped my understanding considerably.

    Wayne
     
  10. acer2000

    acer2000 Senior Member

    Messages:
    602
    Likes:
    253
    Is there a link to the full video to watch online? I went to the dateline site and it doesn't appear to be there... Youtube has a clip from the Today show, but its only a snippet.
     
  11. Frickly

    Frickly Senior Member

    Messages:
    1,046
    Likes:
    35
    Texas
    Sorry

    I couldn't find it either. I would check back in a couple of day.
     
  12. Finch

    Finch Down With the Sickness

    Messages:
    326
    Likes:
    7
    Oh my, I've always wondered about autism. I often thought I could kind of understand why autistic people feel the way they do and that there was only a fine line that kept me from going there. I didn't develop ME/CFS until age 32, but I've always had the other feelings. On the other hand, maybe I don't even know what I'm talking about. Maybe I'm just too empathetic! Whatever. The connection between autism and ME/CFS seems very plausible to me.
     
  13. Frickly

    Frickly Senior Member

    Messages:
    1,046
    Likes:
    35
    Texas
    Finch

    It is interesting that many of the children with autism have parents that not only have autistic tendencies but diseases such as MS, ankylosing spondylitiss, RA, Fibro and CFS. If there was a study done on CFS and autism (combined with it's common comorbid syndromes such as OCD, ADHD, Tourettes, dyslexia, allergies, gasto issues, just to name a few) I would not be surprised to find that many CFS patients have these other issues as well. That being said, just because you have CFS does not mean you would have autistic symptoms. The theory is that, because these kids have an underlying condition (possibly a mitochondrial dysfunction) and they are given a large amount of vaccines in combination with being exposed to a toxic enviornment before the brain is completley formed that the disease attacks the brain. In an older group it may attack other organs in the body. My doc beleives that this is an autoimmune disease and I am inclined to agree with her. However, as we all know, the jury is still out on this issue.

    It's been a long day so I hope my ridiculously long sentences made some sense but it is the best I can do right now.

    Take care,
     
  14. Finch

    Finch Down With the Sickness

    Messages:
    326
    Likes:
    7
    Autism

    Just wanted to add that I have a cousin who's had fibromyalgia since she was in her teens. Her oldest son has autism. He's probably around 5 or 6 years old now, I think. He got early intervention, and I hear he's doing very well and is called a "poster child" for autism treatment. The last I heard, my cousin was also improved after learning her vitamin D levels were very low and adding vitamin D supplementation. She has a younger son also, and he does not have autism.
     

See more popular forum discussions.

Share This Page