Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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Doctor says chronic fatigue syndrome can be cured!?

Discussion in 'General ME/CFS News' started by livingwithcfids, Sep 17, 2011.

  1. livingwithcfids

    livingwithcfids

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    Hi,
    I just discovered this interesting article tonight entitled "Irish doctor says chronic fatigue syndrome can be cured" It goes onto say that to date 65% of his patients actually recover from the treatment. Enlander initially designed an injection that he has been treating patients with, and more recently he began supplementing the injection with a substance called immunoprop, an immune system adjuvant.

    I am just very confused right now as I've heard Dr. Enlander to be one of the best in his field. And what exactly is the article specifying as the "cure and/or high success rate"--is it Dr. Enlanders injections or immunoprop?

    :Sign Help: (please)




    Source: http://www.irishcentral.com/news/Ir...e-syndrome-can-be-cured-107022573.html?page=2
     
  2. valentinelynx

    valentinelynx Senior Member

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    ;)had to titter a bit... I know we ME/CFS folks have a hard time with meds, but that's pretty rough, if only 65% "recover" from this particular treatment! Sorry, my inner editor runs wild.
     
  3. ukxmrv

    ukxmrv Senior Member

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    Dr Enlander is a member of this forum. Have a look around first of all and do some research about that article. I have a feeling he said at the time he was misquoted or badly quoted.
     
  4. Tony Mach

    Tony Mach Show me the evidence.

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    What people say and what gets printed in the press (or on a website) are two different things And not to mention what they meant, what the reporter understood, what is actually happening, and so on. ;)

    I would guess he meant is that 65% improve with his treatment. And that he thinks that a cure (with XMRV research and so on) is becoming possible.
     
  5. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Simple fact is most media and many editors SUCK ASS today
    seen that at first hand
    my Mum's an artist, and got interviewed for local paper, I was there when it occured
    they hatchet jobbed the interview making her sound like a religious nut job, jebuz :( Twisted lot of what she said both directly and by editing the conversation so things were out of original sequence/context.
    do NOT trust the media!

    here's a very appropriate item to watch, was talking about police brutality in London UK on another forum, disabled guy got batoned and pulled from his wheelchair TWICE...cerebral palsy, impossible for him to be a threat to the cops.
    Of course the cops got entirely away with it

    but what's important is to note how the interviewer, on BBC of all channels, basically accused the guy of provoking it...ugh

    [video=youtube;jfGvyrjEbK4]http://www.youtube.com/watch?v=jfGvyrjEbK4&feature=related[/video]

    oh and I'm no idiot, I hate riots and scumbags, but this case, and others, illustrate many things wrong with our societies
     
    ahimsa likes this.
  6. livingwithcfids

    livingwithcfids

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    silverblade that was quite shocking...never knew it was that bad.

    Looks like I answered my own question with a bit more of research.

    http://youtu.be/M4Jj6S0_06A (this is a fairly new video where Doctor Enlander says "we dont know" as a follow-up question with there being no cure as well as feeling unsure about Ampligen for treatment. I suppose the media manipulated his words a great deal then.
     
  7. ixchelkali

    ixchelkali Senior Member

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    :Sign Good one:
     
  8. valentinelynx

    valentinelynx Senior Member

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    <snort>:thumbsup:
     
  9. November Girl

    November Girl Senior Member

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    I wish I had all the money and energy I've spent over the years on doctors who promised they could cure me! It really is a horrifying amount. Personally, I'll never go to another doc who makes that claim.

    There are too many docs I highly respect who don't make that claim, but have a reputation for improving their patient's quality of life and level of functioning.
     
  10. ukxmrv

    ukxmrv Senior Member

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    I've seen Dr Enlander as a private patient and he has never even mentioned curing me or made any claims. He does collect data on how his patients respond to different things.

    Over the decades I've spent thousands of pounds on doctors. Funnily enough alternative practitioners can be even worse in my experience.

    In the UK we have the Psych lobby and things like the Lighning Process claiming all sorts of improvements with their treatments. Lots of charlatans out there. The worse ones are those who do actually believe their claims.

    We wouldn't need forums like these if cures were available.
     
  11. Nielk

    Nielk

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    Hi Livingwithcfids,

    I am a patient of Dr. Enlander's. Not only is he a very astute caring doctor, he is very truthful. He says he was miquoted in this article.
    I have been going to him for the past 9 years. Since day 1, he said that he has a success rate with this protocol for 30% of his patients. Moreover, the older you are and the sicker you are, your chances of this working goes down. He told me the after seeing my lab results that he will put me on the protocol but, has hesitations that it will work for me because I waited too long and was already so sick when I got to him. He said though that of all the different treatments that he knows of, this treatment sounds true for me. He said I had a very high Viral load for many different viruses and my immune system was compromised. The Kutapressin which is the major ingredient in his shots is an anti viral. He also adds supplements in the shots to help the immune system. He found that this combination has helped many people.
    I think that he feels very bad about the failure of helping the patients who do not respond. He collaborated with Dr. Montoya on the Valcyte study where he got mixed results. Some people got much better. He had a patient who became blind because of HHV6 being so high and after taking Valcyte, her vision came back. Other patients did not do well. This left him frustrated.
    As a patient population, we confront frustrations all the time but just think for a moment about the doctors who have devoted their careers to treat us. Some of them so genuinely care about us and feel constant frustrations.
    Dr. Enlander is running a study now on GcMAF in collaboration with KDM. So far, he and his nurses say that most of the patients on it are improving nicely.
    He is also starting Ampligen.
    From all the doctors that have ever treated me, I find Dr. Enlander to be exceptional in many ways. Besides being a genius (I think he finished medical school when he was 19), he is knowledgeable, caring and intuitive.
     
    Dainty likes this.
  12. Waverunner

    Waverunner Senior Member

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    Signed. Same for me.
     
  13. Nielk

    Nielk

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    Waverunner and November Girl,

    Have you not read my post about Dr. Enlander? If you are going to make a statement, base it on truth.
    What Dr. Enlander says is that he can IMPROVE 30% of his patients and it's the truth. I have spoken personally with many.
    He doesn't make any claims that he can not deliver. That was my whole point.

    I don't get your statement November girl "Personally, I'll never go to another doc who makes that claim". What claim? That he can improve some of his patientS? Do you prefer to go to a Dr. who says I can't do anything for you - just give me your money. Don't transfer your anger at other doctors onto one that you don't even know.
    Waverunner - the same goes with you. On what basis are you agreeing with November Girl? Do you know Dr. Enlander personally? This whole thread is saying that the media misrepresented what he actually said.

    I am upset, because you are giving a great, moral doctor an undeserved bad name.
     
  14. leela

    leela Slow But Hopeful

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    Neilk,

    My read of November and Wave was more that they have spent so much time and money on people who make a claim like the one erroneously attributed above. My interpretation of their posts was that they are just through believing it and surrendered to the idea of simply managing their illness in the best way possible.

    I think you can relax now, Neilk, because I don't think they were slamming Dr. E :)
     
  15. Nielk

    Nielk

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    Ok leela. I guess I got all worked up because they were picking on the wrong guy. I guess it was more a general comment.
    Dr. Enlander saved my life once so I feel very strongly about him and don't want people to get the wrong impression about him. I understand though the general frustration about doctors who promise the world and then do more harm then good.
     
  16. firefly

    firefly

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    What Nielk said. Dr. Enlander has been an amazing doctor. Sober, attentive, realistic, and yet hopeful and encouraging. I'm glad I've had the chance to be his patient.
     
  17. gregf

    gregf Senior Member

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    The word I use is remission. Not cured, or better, remission, a word borrowed from cancer.

    It is apt when you look at the way the viral count stays low and we do nothing to wake it.
    The virus is always in us, but with good management we can get to remission.

    People who have had ME, and now think they are "cured" are a serious threat to public health.
     
  18. Nielk

    Nielk

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    I get what you are saying but, why do you think that they are a threat to public health?

    I am in remission for Crohn's disease. It's the same thing. You are never cured but you go into remission. I have been in remission for 20 years. To me, it feels like I have been "healed" but, deep down I know that one day it can come back. Yet, any person can come down with it at any moment with no history of it. The same with cancer. They call it remission for 5 years but, then they call it cured even though the person is always considered a cancer survivor.

    Why do you call these states as a serious threat to public health.
    At this stage, we don't know with certainty that one cannot heal from ME. I know someone who has had ME for many years and is now fine for the past 15 years.
     
  19. gregf

    gregf Senior Member

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    Hi Neil.

    Respect for your Crohn's matey. That can be difficult.

    My statement does swing on the XMRV theory, which, I think is likely to be proved true. People under 40 stand a good chance of getting to remission. This age group are more likely to be more sexually active. Assuming the virus is sexually transmitted, and/or the other methods such as breast milk, then society has a problem akin to HIV in the 80's.

    I know of many in this age group, who are not in touch with the developing science, and some who are deliberately not wanting to hear about retroviruses. And many starting families in that state of denial.
     
  20. Waverunner

    Waverunner Senior Member

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    Don't get me wrong, I was only referring to the claim that someone could heal CFS.
     

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