3 Siblings With ME on YouTube

Discussion in 'Fibromyalgia Main Forum' started by jasminetee, Aug 11, 2008.

  1. jasminetee

    jasminetee Member

    I just discovered this YouTube video and figured many of you would want to see it. After you watch it, click on MORE INFO to read an update on the siblings.


    I didn't enlarge this one to watch it because it was hard enough for me to view it in the small window. I'm curious to hear what people think of it.

  2. sturg1

    sturg1 New Member

    thank you for sharing this link. When I see people suffering as much as this family is, I'm thankful for my own level of illness with this disease. I can't believe I say that, but seeing this video makes me aware of how severe I could be. We need to share this with as many people as we can.

    Let's get the word out there! (those of us who feel well enough at the moment to do so).

    Take Care,
  3. pattyholland

    pattyholland New Member

    Hi, Not sure if I am doing this right or not.

    I just typed in eveything you have up there but not sure what to do next.

    Please let me know so I can see what it was that you saw.


  4. tandy

    tandy New Member

    thats a horrible reality for those people.
    I don't even know what to say after viewing that.

    I guess I'm just grateful that I'm nowhere near that bad.
    I have extreme pain and fatigue, and sometimes I'm in bed all day long,.... but I'm not confined to my bedroom and in the dark.
  5. avuton

    avuton New Member

    This is taken from the Invest in ME web site (www.investinme.org) and is on their 2006 ME/CFS Conference DVD along with Meridian ITV film of severe ME.

    Invest in ME got permission to use it from the Norwegan NRK channel and made the subtitles in English.

  6. Lichu3

    Lichu3 New Member

    this is from the U.S. and was part of PANDORA's (based in Florida) 2007 contest to make a video about CFS.
  7. avuton

    avuton New Member

    If you mean the film discussed in the first posting in this chain -
    then you are wrong (why would a US film need subtitles?).
    It's from Norway, was put on the Invest in ME web site and conference DVD in 2006. Have a look at their web site to see.
    Think you must have some other film in mind.
  8. pattyholland

    pattyholland New Member

    Thanks for putting that so I could see it.

    Wow I have a lost for words after seeing it.

    thanks again

  9. jasminetee

    jasminetee Member

    Andrew- thanks for embedding it here.

    When someone posts an address here, the most efficient way to go to it is to put your cursor somewhere over the text of the address and Left Click rapidly 3 times, this will highlight the whole address at once, then Right Click and choose "Copy".

    Then open a new tab or window and click in the Address Box and then Right Click and choose "Paste" which will paste it in for you.

    Then hit Enter.

    I've been thinking about these 3 siblings. Did you all read about how much worse they are now? I can't imagine how hard this must be on them and on their parents. Their mother must be exhausted from taking care of them.

    You really gotta wonder about a genetic component when you see 3 siblings all hit hard like this.

  10. tansy

    tansy New Member

    Gráinne McCarry : ‘ME has stolen my son’s life, but there’s no help’

    Tuesday, 12 August 2008 Belfast Telegraph

    ME sufferer David Christie (15) has to spend 19 hours a day in bed. His mum, Antoinette, talks to Gráinne McCarry

    As a young boy, David was involved in everything. He was a scout and he loved trampolining and horse riding. He would have played any sport and he was an Irish national champion in ju-jitzu in 2002. He was no different from any other wee boy. He was always outdoors and he never gave me any trouble. He got involved in everything that was going. He was such a thoughtful child — a wee gentleman.

    His sickness began when he developed a rash in February 2003 at the age of 10. The dermatologist at the Royal Children’s Hospital in Belfast had never seen it before. He took photographs and a biopsy and diagnosed David with the skin condition pleva, which is caused by a viral infection. He was given cream for it and still attends the dermatologist to this day about it.

    The following year, David began St Mary’s Grammar School. He was so alive and full of energy and he used to walk six miles every day to school and back. Then, all of a sudden he started to lose his energy and we had to give him a lift to the school gate because he wasn’t fit to walk it.

    When his condition deteriorated, he didn’t have the energy to walk from the gates up the steep hill into school. We got a special pass from the principal to drive to the school gates. Then, it got to the stage where he couldn’t manage school at all.

    After six and a half months of his first year there we had to take him out of school. He wasn’t fit to attend.

    He was complaining of chest pains, nausea, fatigue and a general feeling of unwellness. For a long time, we didn’t know what was wrong with him. He was diagnosed with ME (Myalgic Encephalomyelitis) in October 2005.

    ME is a multi-symptomatic, organic disease which affects each sufferer differently. David’s symptoms include hallucinations, disturbed sleep, memory loss, aches and pains, concentration difficulties, mouth ulcers, sore throats and balance and co-ordination difficulties.

    I was working as a fitness instructor at the time, taking classes in different leisure centres around the city, but I had to give it up to take care of David. I take a couple of classes every week now, but I feel guilty leaving the house.

    His schoolfriends have all moved on. I doubt if any of them would recognise David if they saw him today.

    He has long curly hair to his shoulder because he hasn’t been able to get it cut. He just looks ill ... he doesn’t look like himself. The ‘David’ everyone else remembers was a swarthy, good-looking wee boy. Now, he can’t even manage to wash his hands and face by himself.

    He was given anti-depressants when he was 14 and he just lies in bed 19 hours a day. It wouldn’t be fair to take a photograph of him as he is now. He’s lost touch with everyone. He’s growing up in his bed and has no contact with anyone outside of the house ... just me, his daddy, Paul, and his two brothers, Paul junior and Conor.

    Even to get him to his medical appointments is a struggle. People don’t understand the effort behind it all. The consultant doesn’t see what we have to do to get David to the hospital. For a lunchtime appointment, I have to start waking him at 9.30am in order to get him washed and dressed on time. His muscles have deteriorated so much that if he could make it down the stairs that would be an extremely good day for him. He only ever goes outside when he has a hospital appointment.

    Another ME sufferer explained the disease to me as living in a semi-coma. When David is awake I tell him things and the next time he wakes up he can’t remember them. He couldn’t believe it when I told him that his big brother Paul was 21. He just kept repeating “21”. He was so shocked.

    Life is passing him by and it breaks my heart to see him like this. He should be at school studying and hanging out with his friends. He’ll never get those years back. His time as a teenager is a very important part of his formative years.

    Life is continuing on when he is asleep. A few weeks ago he asked me when Mother’s Day was. When I told him it was over, he was so annoyed. I can’t even say he lives his life because he doesn’t live. He exists. It’s a living death.

    His diet’s very poor, he’s underweight. He’s growing into a young man in bed. We didn’t know much about the illness until David was diagnosed with it. I’d heard of it, but I didn’t realise how severe it was.

    Terms like ‘yuppy flu’ and ‘the sleepy sickness’ are an insult to ME sufferers. ME has been a recognised illness by theWorld Health Organisation since 1969 and by the Royal Society of Medicine since 1978.

    There’s absolutely no help for David here. ME sufferers here are offered a psychiatrist in Northern Ireland. David does not need a psychiatrist. He needs someone to help him get better.

    There are two types of therapy available here — Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET).

    The first tries to get the patient to change their attitude towards their illness. David doesn’t have an attitude towards his illness. He doesn’t have the energy to have an attitude.

    The other option, GET, is too dangerous for David as his muscles are extremely weak.

    What is being offered in Northern Ireland is psychiatric care. ME is not a psychiatric illness. There is a significant amount of research out there proving that ME exists. Recently, Dr Derek Enlander, an Ulster-born doctor who practices in New York, came over to see a small number of ME sufferers in Belfast at a private clinic on the Antrim Road.

    From David’s medical notes, he was able to tell me that my son tested positive for the Cosackie B virus which is a variant of ME when he was 18 months old. He took sick with a virus then and it must have been in his system since.

    Dr Enlander said that David’s immune system was dysfunctional. He was given tablets and medicine containing vitamin and minerals, and a weekly injection. This is not a cure, but if it works it could boost his immune system by 65%. It costs me £240 every month to pay for this and I can’t afford it.

    David got his heart tracked by a scanning machine and it showed that his heartbeat was irregular, also.

    I’m more angry now than I’ve ever been. To think that this medicine I’ve received from Dr Enlander has been out there all this time. We just didn’t know about it. It angered me that David’s been left to deteriorate this far.

    If we’d known about this sooner, David could have been relieved of some of his suffering.

    It’s a national scandal that ME sufferers can only get this type of treatment if they are prepared to pay for it. David has been neglected for far too long. He has been left to waste away in his bed. It’s so desperately inhumane.”
  11. tansy

    tansy New Member

    Hi Tee

    Just reading this, and other internet forums, has shown that there are many other families affected indicating an inherited genetic componant.

    Looking into inherited factors enabled me to make better Tx
    choices. I was also able to predict the relative most likely to suffer a post viral illness; this was one occassion where I would rather not have been proved right.

    tc, Tansy
  12. jasminetee

    jasminetee Member

    I'm glad you were led to better treatment options for yourself at least. That's another sad story that you posted. It's just too bad we can't get the word out where it counts, it seems that the people reading such articles are the affected, not the non-believers.

  13. Spinetti

    Spinetti New Member

    Thanks Andrew for posting the video here.

    As difficult as it is to watch, I think everyone should see it. This is the severe form of what we're dealing with.

    For anyone to propose Graded Exercise Therapy (GET) or Cognitive Behavioral Therapy (CBT) as treatments for M. E. is ridiculously inadequate, at best, and profoundly harmful, at worst.

    Thanks for the posts and your comments, Tee and Tansy.


    [This Message was Edited on 08/13/2008]
  14. jenbooks13

    jenbooks13 New Member

    I keep thinking they have black mold (stachy) in their house. Remember, Lisa got so sick and her cat died of it. I wish someone would contact them and have their home tested. The parents may have some symptoms themselves just not as bad.
  15. karinaxx

    karinaxx New Member

    thanks so much for this post and getting attention to the huge problems our children face with ME!

    Also my sons life is wrecked from ME and though he is not as bad anymore as these kids(it is mostly the relentless pursuit of our systems to drag these kids through school, no matter what, which is getting these kids to the point of beeing bedridden) he is still not able to get through normal school.
    I cannot stress the issue enough,



    [This Message was Edited on 08/13/2008]
  16. karinaxx

    karinaxx New Member

    yes jen, i agree, mold is absolut poison for somebody suffering from ME, as somebody suffering from AIDS, but i think, though very important component, it is just one of the culprits making us worse. .
    It was one important factor of making me much worse!!!

  17. jasminetee

    jasminetee Member

    Hugs to you and your son. It must be so hard to have to watch your own child go through this.

  18. karinaxx

    karinaxx New Member

  19. Tussen

    Tussen New Member

    I am Norwegian, and can confirm that this program is Norwegian. It was first broadcasted in Norway January 16th 2006.

    These few minutes on TV was the beginning of a long and positive process in the Norwegian media regarding ME. When the media got interested, the Politicians got interested, and much has happened over here :) It is not utopia, but the understanding of the illness is MUCH better today.

    Thank you so much to the Krisner family!
    [This Message was Edited on 08/15/2008]
  20. Lichu3

    Lichu3 New Member

    I didn't look at the link above because I didn't think there would be another set of three sibs who had ME on Youtube.........here's the U.S. one:



    This is a good video; sad as it is, I liked that they show how life was prior for these sibs (esp. the older brother journalist on TV) and the effects of the illness. I also liked that they had a surgeon who has had ME comment.

    The only thing I didn't like was the surgeon's quotes about normality (like it will be achieved for everyone given time) and nothing mentioned about the lack of any good treatment out there.

    We need a similar video in the U.S.

    [This Message was Edited on 08/15/2008]