not cfs...but mad cows disease

Discussion in 'Fibromyalgia Main Forum' started by angeldust, Aug 22, 2006.

  1. angeldust

    angeldust New Member

    Tragic and alarming case of a young man mistakenly diagnosed with and treated for CFS, dies of Mad cow disease.

    From Argus Newspaper UK

    The family of a man killed by the human form of mad cow disease have criticised health officials who, they say, withheld information for years about his condition.

    Engineer Mark Buckland, 32, died on May 23 at The Martlets Hospice in Hove.

    During the six months leading to his death, his body and mind were gradually debilitated by the condition vCJD (variant Creutzfeldt-Jakob disease), which is the human form of mad cow disease.

    His family, from Preston Park, Brighton, are angry doctors failed to diagnose the condition earlier, despite his health deteriorating since 2003.

    An inquest at Brighton County Court yesterday revealed Mark died after contracting vCJD through a blood transfusion in September 1997.

    The donor of the infected blood died of the condition in April 2000 but health chiefs did not inform Mark and the other blood recipients they were at risk until three years later. By that time the incurable disease had killed another recipient.

    After the inquest Mark's father, Peter, said: "Even though there was this bright burning beacon of his donor's death, no one thought he could have vCJD."

    Mark is the third person to be killed by vCJD transmitted by blood transfusion and is the only victim diagnosed with the condition before his death.

    More than 150 people have been killed by vCJD contracted by other means.

    Mark was offered no specialist treatment even after he was told there was a possibility he might be infected.

    During 2003, the ex-Blatchington Mill School and Brighton, Hove and Sussex Sixth Form College student complained of constant flu-like symptoms, tiredness and pains. Neurological specialists in Ipswich, where he lived at the time, diagnosed chronic fatigue syndrome (CFS) and prescribed him treatment for it.

    Mr Buckland told the inquest how his son, a senior research engineer for British Telecom, had spent hundreds of hours researching CFS in the hope of finding a way to make himself better. He said: "Had he known he had vCJD and he had limited time to live, he would have been able to treasure that time and spend it with his family and friends."

    Mr Buckland said Mark was a shy man who was loved and respected by his friends. He was a keen photographer, cyclist and Buddhist, although he had a Jewish upbringing. He had trained to be a volunteer with the Samaritans.

    Mr Buckland said: "It was awful to see him deteriorate the way he did. He was so brave and strong right until the end. We'll miss him terribly."

    In September 1997, Mark, who had suffered with an intestinal condition since his teens, experienced severe internal bleeding during an operation.

    He was given a transfusion of 40 units of blood.

    The inquest heard how the transfusion would have included blood from about 40 different donors, among them the person who was later discovered to have vCJD.

    After hearing evidence from Mr Buckland and two neurological experts, Coroner John Hooper said he would write to the Department of Health urging that all patients who had been transfused with blood later revealed to be from an infected donor were made aware of their situation as soon as it was known.

    9:25am Thursday 17th August 2006



    By Andy Chiles

  2. Lolalee

    Lolalee New Member

    Now, that is very tragic. CFIDS is so varied and strange that I think we all think at one time or another if we have something else that might be deadly.

    This is a truly sad case.

    Lolalee
  3. mrdad

    mrdad New Member


    This is such a tragic story!! Once again it reiterates
    my question Posted here last week about possible link
    between illness and blood transfusions. Didn't get many
    hits to my Post surpirisingly, but I believe there are
    many things that can be unknowingly passed on to a patient
    from a blood donner to a patient. I wonder in my case if
    that was the cause for my health problems worsening??

    As a precautionary act, it may behoove one to donate
    there own blood before any surgery when possible!! What
    we don't know MAY hurt us.

    Just some thoughts,
    MRDAD




  4. Tantallon

    Tantallon New Member

    And it makes you realize that things could be a lot worse.

    I notice in your profile that you are now 50% better, can you say what means enabled you to get to this stage. I am presently housebound and any input would be greatly appreciated.

    Sue
  5. AbbeyMae

    AbbeyMae New Member

    Last year the salesman I bought my car from had a wife who had fibromyalgia. Somehow I must have connected with him, he was my salesman.

    However, he had said that his wife had suffered with a lot of pain. She was complaining of severe headaches, so he took her to her Dr.

    Her Dr. sent her home saying that her headaches were caused from her fibro. She died the next morning from a brain aneurysm. He comforted himself by saying she is not suffering anymore.

    I bet there are alot of misdiagnosis, Dr.'s saying that it is your FMS and/or CFIDS. So sad.

    Love and Hugs,

    AbbeyMae

  6. Windytalker

    Windytalker Member

    Since the U.K. has had so many problems with Mad Cow, I think this doctor was purely negligent. That should have been one of the first tests he did on this poor guy.

    Doctors may go to college for years, but that doesn't make them smart or encourage common sense.
  7. angeldust

    angeldust New Member

    Sue

    You asked how I had managed to get 50%, now probably 65-70% better. Its been a long and difficult journey with plenty of ups and downs. The progress I have made so far is mainly due to:

    Pacing myself - which at first was very difficult as it meant doing hardly anything at all, which was very difficult for me.

    Getting psychological support to help me cope with living with an illness that is so restrictive. In particular since being poorly I have suffered from anxiety really badly; sensory overload, panic attacks, I take medication for this which helps a bit. I have also been taught techniques to help manage stress better as stress tends to lead to relapse.

    Physiotherapy has been essential as my core body strength had dissapeared during my bed bound phase and getting it back required specialist input. I now do a gentle work out every day (15mins) including light weights and I now can walk 20 mins twice a day - this is a massive improvement and makes me feel so much better. Being more active but still pacing myself has improved my sleep, which makes such a difference to how I feel.

    Through studying at home, I am starting to get my brain power back. For a long time I couldn't do anything that required thinking and doing at the same time - which was really scary and my short term memory was really, really bad. I used to get my words mixed up and couldn't really hold a conversation for very long. These problems are all fading away now my concentration and memory are much better unless I'm very tired or stressed.

    Finding a Dr who truly understands has made a big difference to me. Knowing people who have recovered and got back to a full and healthy life gives me hope and encouragement.
  8. Tantallon

    Tantallon New Member

    It really gives you hope when people start to get their lives back. I think I am going to have to see doc about physiotherapy as hardly walking now and legs are very weak. Trying pacing, but as you can appreciate, it is very hard when your having a good day.

    Anyway hope you continue to improve your health.

    Cheers,
    Sue