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!
Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
Discuss the article on the Forums.

Professor - ME patients deserve compensation for highly reprehensible treatment

Discussion in 'Rituximab: News and Research' started by Daisymay, Oct 22, 2011.

  1. Daisymay

    Daisymay Senior Member

    Messages:
    261
    Likes:
    274
    http://translate.google.co.uk/trans...t-paa-psykiatrisk-3601762.html&forumid=331851

    Requires investigation of the Norwegian ME treatment

    Professor and ME expert Ola Didrik Saugstad believes that many ME patients deserve compensation from the Norwegian health care system for what he characterizes as highly reprehensible treatment.

    I have compared the treatment of ME sufferers with the mentally ill were the 50 - and 60-century when they were lobotomized. With that, I try to say that they have a very bad and very reprehensible treatment, says Professor Ola Didrik Saugstad to tv2.no.

    The professor has the last 15 years involved in the ME case. He has a son with ME and have had to familiarize themselves with what ME / chronic fatigue syndrome. This is because he believes the Norwegian health care system mistakenly focused on ME as a mental illness.

    Those who have argued that it was a psychosomatic disorder has had a major influence. And when Health and Social Affairs established a so-called "experts" was that dominated the psychosomatic-oriented professionals. I believe that Health and Social Affairs has a large share of the blame for the unfortunate attitudes that have developed this disease, says Saugstad to tv2.no.

    Saugstad know well to study at Haukeland Hospital, where ME patients have been treated with cancer drug Rituximab. Since he has been in close contact with cancer doctors Fluge and Mella.
    Wednesday was the study published and TV 2 could tell that the Norwegian ME breakthroughs to solve ME riddle .

    Also read: About ME study that offers hope to millions of people

    Hope to investigation

    TV 2 has met ME sufferers "Gunnar" who was admitted to a psychiatric hospital and treated with antidepressants. Saugstad know of similar cases from England.

    I would characterize this as a violation of these patients. A serious assault, says Saugstad to tv2.no.

    He is confident attitude of ME will change and that we will look back in time we have been through with amazement.

    I think NOK it is correct to say that we have developed a good NOK care for these, and I apologize.

    I hope that many of these cases will be examined one day. I believe that many of these patients and their families deserve compensation from the Norwegian health care system, says Saugstad.

    Rejected by the local hospital


    Saugstad is a famous person in the ME community. Many people have approached him in a desperate attempt to get help.

    I've traveled around to many of the sickest patients in Norway. It was a shock for me to see how sick these people are. I am a pediatrician and has worked with intensive care medicine for many years and have seen many sick patients over 30 years. This is one of the worst I've ever seen.

    The professor tells of encounters with patients in the dark room in their homes. The only help many get is from family members.

    See video: Touched ME patients could see hope for research breakthrough

    I had a patient who was at home. Had it not been for the close relatives working in the health care system as she had not lived NOK today. I called the woman's local hospital and told him that I thought she probably would not survive. I told him that she was almost in a coma. The answer I got was that they did not believe this was a somatic (physical, editor.) Disease and that it therefore was not their responsibility.

    This is not the only episode Saugstad had.

    I have felt that local hospitals have not wanted to take responsibility for the sick patients. There is little interest in how to help these patients, says Saugstad.

    Health Directorate takes self-criticism

    Assistant Health Director in the Directorate of Health, Bjorn Guldvog is humble in the face of the new local research results:

    Do you take self-criticism at the way these patients has been met by the health-Norway?

    Yes, in a way we do it NOK. I think that we have too little has been able to meet people who have chronic fatigue in a good NOK way, and we are looking for good ways to do this, he says.

    What will you say to those who for years has been met with disbelief by doctors and health care systems in Norway?

    It is of course very unfortunate for the people concerned. We are working actively to ensure that those with ME be treated with respect in every individual case.

    I think NOK it is correct to say that we have developed a good NOK care for these, and I apologize, says Guldvog

    My ME sick children received no help

    One of those who have come to know this body is Kjersti Krisner. She has three ME-ill children. In an interview on TV 2 News Channel Friday she tells how the family has been met by the health care system. And she is merciless in his criticism.
    See the strong interview here:
    (Article continues below)

    Disappointed with the Health Directorate

    In 2008 Professor Saugstad wrote a letter to the Health Directorate, where he took up the lack of services for the most severely ill ME patients.

    I was allowed three patients to mention them specifically. This was very poor patients not receiving treatment in hospital. I am disappointed with the Health and Social Affairs. I never got any proper answer.
    Read also: Elene (26) were cured of ME

    According to Saugstad answer was that they generally would focus on the very sickest.

    As far as I've seen, they have never done it, says Saugstad to tv2.no.

    Rejects that ME is a psychiatric disorder

    Until now, treatment of ME patients mainly consisted of cognitive behavioral therapy, graduated exercise and activity courses. Mastery Course is about learning to live with the disease.

    Read also: American professor applaud Norwegian research results

    Offer to ME patients have come from those who think that this is not a physical illness. When it comes to cognitive behavioral therapy, I was very against it. The same applies to graded exercise. There are studies that show that these patients are worse of it. I am opposed to these treatments, not only has been released, but pushed on patients. Elene Nverlid er pilotpasient nr 3 i gjennombruddsstudien utfrt av professor Olav Mella og overlege ystein Fluge ved kreftavdelingen p Haukeland sykehus. God morgen Norge Elene Nverlid pilot patient No. 3 in the breakthrough study conducted by Professor Olav Mella and Dr. ystein Fluge the cancer ward at Haukeland Hospital. Good morning Norway

    Saugstad also criticizes those who provide and promote this form of treatment for ME patients.

    There has been an international trend that these psychiatrists have had tremendous influence when it comes to attitudes to ME, and it has spread to Norway. Many of them said anything about cognitive behavioral therapy and graded exercise, has never met some of the sickest ME patients. In my opinion it is entirely basalt within medication that you see and examine patients before they make diagnoses and prescribe treatment. Anything else is a violation of basic medical ethics.

    Comatose patients

    The very sickest I've seen falling between all chairs in the Norwegian health care system. The reason is that they are not going to the doctor.

    On their visit to ME patients he has met people who have been out of his room for several years.

    Some of the worst lies in an almost comatose state. For me, it almost looked like they have an inflammation of the central nervous system. As you only see in very sick patients who are hospitalized.

    Roses cancer doctors

    Saugstad has been in touch with Fly and Mella from the beginning of the study and are very positive about their work.

    Read also: Will find the world's first ME-test

    The professor hopes that the Norwegian study will lead to an improvement in the treatment of ME patients.

    The most important thing this study will bring with it an opportunity for treatment that is effective. The second is that the study clearly indicate that ME is a physical illness and that it affects the immune system. So it goes in the direction of being an autoimmune disease, says Saugstad to tv2.no.

    In the long run, this could mean that doctors will find a clear cause-and-a test that can show whether you have CFS or not.

    English version: Norwegian research breakthrough Can Solve CFS mystery
     
    Ren, NK17, kurt and 2 others like this.
  2. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

    Messages:
    1,014
    Likes:
    561
    Noosaville, Aust
    NOK???
    Thanks for this daisymay. An interesting read.
     
  3. Sasha

    Sasha Fine, thank you

    Messages:
    8,805
    Likes:
    8,254
    UK
    Thanks, Daisymay - there are some interesting interviews coming out of Norway on the back of the Rituximab findings.
     
  4. Daisymay

    Daisymay Senior Member

    Messages:
    261
    Likes:
    274
    Sorry, trouble with the link, it takes you to another good article but to find the one I posted, go to the link and then down the page to - Read here: Requires investigation of the Norwegian ME treatment to see the original.
     
  5. SilverbladeTE

    SilverbladeTE Senior Member

    Messages:
    2,150
    Likes:
    1,720
    Somewhere near Glasgow, Scotland
    Compensation? yes, helpful, as most of us have had our lives ruined.
    But that is not nearly enough, nor what's really needed

    • Massive trials in every nation of these scum who caused this, those found guilty suffering full life sentences ********** for crimes against humanity and mass murder by deliberate fraud and refusal to treat the sick (********** it's the legal penalty in some countries)
    • public repudiation and apologies from Presidents and Prime Ministers
    • Changes in law and way science, industry and government work together, are overseen and to force proper responsibility and draconian punishments for abuse.
    • Complete sequestration of EVERYTHING those responsible own to pay for treatments of their victims.
    • Removal of every article from every journal etc of those involved at the heart of this, their pseudo-science openly derided as bigotted, moronic and evil, a horror that should have died 70 years ago.

    And make them sit down and explain WTF they did this crap, to the parents and children of those they let suffer needlessly or caused to die.

    Or they can own up now, as in "truth & Reconciliation"
    • admit their guilt on camera and save us all wasted time, time we need ot work on treatment,
    • apologize in public,
    • voluntarily give up a great proportion of their il-gotten wealth to aid their victims
    • suffer short prison sentences (5 to 10 years)
    • revocation of their medical licences (they maybe allowed to practice in charity work as in Doctors Without Borders, as betetr their skill s be used rather than rot in jail needleslly) but they will NEVER hold responsible positions or be allowed any acreditation/support for the media/research etc


    Every gawd damn day they lack the guts or Humanity to own up to their evil, more suffer and die.

    **********

    Meh :/
     
    Ren, NK17, Nielk and 1 other person like this.
  6. Yogi

    Yogi

    Messages:
    67
    Likes:
    47
    This is excellent news from Norway. There are alot of articles on the Norwegian website but although Google translate is good, it is quite difficult to understand exactly what is written.

    ANY NORWEGIAN ME/CFS SUFFERERS OUT THERE WHO COULD BRUSH UP THE TRANSLATION PLEASE ??
     
  7. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    841
    UK
    Thanks dasimay - nice to see things getting better in Norway (a personal friend there much involved for years). It brings the thoroughly unpleasant visit (stretchered into A & E collapsed) back - ten years ago when their very basic tests revealed nothing and 4 junior Docs at the bottom of the bed saying "we just got a new theory - it's all in your mind". So this sort of gobbledegook is taught at medical school apparently. The psychiatrist sent in was a nightmare - just wish I had the strength then to say "and so are you in my mind at the moment unfortunately"
     
  8. max

    max *****

    Messages:
    192
    Likes:
    34
    Here in the UK, no media coverage as yet. Why?
     
  9. max

    max *****

    Messages:
    192
    Likes:
    34
    ........... "Health Directorate takes self-criticism

    Assistant Health Director in the Directorate of Health, Bjorn Guldvog is humble in the face of the new local research results:

    Do you take self-criticism at the way these patients has been met by the health-Norway?

    Yes, in a way we do it NOK. I think that we have too little has been able to meet people who have chronic fatigue in a good NOK way, and we are looking for good ways to do this, he says.

    What will you say to those who for years has been met with disbelief by doctors and health care systems in Norway?

    It is of course very unfortunate for the people concerned. We are working actively to ensure that those with ME be treated with respect in every individual case."



    Is this real? Is this the Norwegian Government position?
     
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    Yes, pls, a real translation would be ideal!! This would be really good to use, esp on Wikipedia where they want everything sourced to what they consider reliable sources such as newspapers.
     
    NK17 likes this.
  11. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,419
    Likes:
    2,087
    Australia
  12. snowathlete

    snowathlete

    Messages:
    2,245
    Likes:
    2,789
    UK
    the thing is that our world at the moment runs on money as a motivator. So justice is no longer about justice. Its about money. So its very difficult to get justice. I.e. appology, fair and reasonable compensation and big changes to ensure this doesnt happen again. I bet there are other illnesses that are younger than ours, that are being treated the same way, and will have to endure 20-30 years yet of this kind of treatment before they get a breakthrough like ours...

    ...that is the big concern for me. What can be done to ensure this doesnt ever happen again? To get much movement at all, what is really needed is a big legal challenge. For that money is needed. i.e. someone very wealthy who wants to make a difference, or perhaps a group effort, i.e. alot of patients clubbing together and making a group legal claim.

    Will it happen? I hope so, but it needs someone with the right resources/knowlege to take it up.
     
  13. ramakentesh

    ramakentesh Senior Member

    Messages:
    525
    Likes:
    82
    Indeed it is a disgrace and when its all clear, done and dusted there are a few people - who have staked their medical reputations on discrediting and in some ways punishing CFS patients - that should be held accountable.
    But I also think its important not to jump the gun. It was done in the past and it was done with XMRV - I remember people here saying that they were 100% certain that they had XMRV, etc. We need hope but we need to be patient until we have the definitive evidence in our hands, then we pop the champers and do our best to get a variety of people disbarred. I can be quite unrelenting when it comes to social justice and I look forward to making this a special cause.
    Im glad I am not in England I think Australia is quite good. I have not met a doctor in years that did not accept that CFS had a physiological basis.

    Nowdays instead I meet what I call 'prescribers'. Doctors who are now experts and have taken speculative science and now portray it as fact.
     
  14. barbc56

    barbc56 Senior Member

    Messages:
    1,578
    Likes:
    973
    Sorry Silverblade. I feel that what you are saying is like walking into the very stereotype we have been trying to avoid.
     
    Jenny likes this.
  15. max

    max *****

    Messages:
    192
    Likes:
    34
    Sorry barbc56. I feel what you are saying is like pretending we live in a society that is open, honest and transparent when that is clearly not the case.

    Sooner or later - enough is enough.

    momentum in any campaign against authority will be attacked in anyway possible - authority only has 'illusion', nothing else.

    v-3.1.jpg
     
    Ren, SilverbladeTE and justinreilly like this.
  16. kurt

    kurt Senior Member

    Messages:
    1,132
    Likes:
    176
    USA.Earth
    Abuse creates a challenge for both the abuser and the victim once the crime has been found out. I think barb has a good point, we do have a better case to make now, but let's not overstep the reality of this situation. For one thing, the study is just an opening salvo, much more research will be needed to convince all. Secondly, even when we are proven right (which we will be of course, ME/CFS is and has always been a real physical disease), then WE are the ones who will be in the driver's seat. How will we act? Will we be vindictive, taking out our anger on the perps of our abuse? Or will we try to move forward with fairness and justice. Science is not a black and white game, the evidence behind ME/CFS as a physical disease is still pretty complicated and we will need the good will of many researchers for decades in the future. I think it best to set a precedent that is firm and progressive, but not full of outrage or over-the-top with vengeance. The latter would cause more harm to us as researchers would want little to do with such a volatile patient group.
     
  17. max

    max *****

    Messages:
    192
    Likes:
    34

    Nothing has changed since the Fluge study publication, the UK government have not made any statements. Until they 'move' we must keep pushing and letting them know we are still here. I don't know how bad things are in your house Kurt, in my house things are tough, every day is a battle - and that is not meant to be dramatic - it is a statement of fact.

    If you prefer I take my only 'outlet for anger' elsewhere, say so and I will oblige - you should see the stuff I write and don't post!
     
    Ren and justinreilly like this.
  18. Mog

    Mog

    Messages:
    91
    Likes:
    9
    UK
    I have often dreamed that "when" I'm better, I will get a good lawyer and take the NHS to court and sue them for medical negligence, for me and for everyone else who has suffered from ME. Will somebody sensible or legal tell me that that just wouldn't be a possibility? Or can I keep dreaming?
     
  19. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    I see 'taking out our anger on the perps of our abuse' as an integral part of 'fairness and justice', at least with regard to the real hardcore abusers- CDC, NIH, Wessely, etc.
     
  20. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

    Messages:
    1,014
    Likes:
    561
    Noosaville, Aust
    How could anyone compare the frustrated words of a sick patient to the abuses of decades we have suffered? The research establishment, insurance companies have consigned me to the living standards of someone in the third world for more than 20 years. Don't have to get into bed with our abusers. If I see a neurological-challenged patient rail at those who go out of their way to express their lack of humanity, then I am not so quick to rush in to admonish.
     

See more popular forum discussions.

Share This Page