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What ever happened to the Mike Dessin treatment story( follow up)?

Discussion in 'General Treatment' started by bakercape, Sep 1, 2010.

  1. bakercape

    bakercape Senior Member

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    A while ago a big story was done on this site about a severe ME/CFS patient Mike Dessin. The story was a very interesting read as this man was severely ill but with the help of a treatment from an unnamed doctor he seems to have made a significant recovery.

    I got the feeling or anticipated that at some point this treatment was going to be shared with the CFS community in general so others could try it and possibly benefit. Especially the severely ill.

    Maybe this info was shared and I missed it but there are others on deaths door with ME/CFS and if there is a treatment that helped possibly save someones life I'm very disheartened that it has not been shared for some reason.

    Does anyone know what the treatment was exactly that seemed to save Mike Dessin. Does anyone know how to get in touch with the doctor who did the treatment and if not another physician who knows how to do administer the same treatment Mike's doctor gave him?
  2. JT1024

    JT1024 Senior Member

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    Hi Bakercape...

    I'm not sure about Mike Dessin but I do know is that M0joey moved across the US to go to the same doctor as Mike Dessin. It appears the treatment he received there didn't work for him.

    Here is a link to M0joey's recent article about his trip to Dr. Peterson in Incline Village: http://www.forums.aboutmecfs.org/content.php?211-Dr.-Peterson-Update
  3. dsdmom

    dsdmom Senior Member

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    Great question, bakercape. I think I initially found PR because of the MIke Dessin story - either that or that was front and center when I first visited the site. Then the group discussing that treatment seemed to become very private and they have their own subgroup on here I believe but you must have permission to join. So teatment is not fully discussed on this site, but from what I understand, it is neural therapy among other things. But that's really all I know - sorry!
  4. mojoey

    mojoey Senior Member

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    Hey dsdmom,

    we decided to make it a private group because of all the vitriol being cast toward mike's doctor, including threats of reporting him for malpractice. We initially wanted the report on treatments to be public so more can benefit from our experiences but because of the threats to our doctor's ability to practice medicine, we decided to take away ammunition.

    If anyone has the right to report his doctor, it is me. Instead it is patients who have never met or even paid for his services that do so. After all, I have not benefited from this treatment as mike and other patients evidently have after spending over 25k. However, I knew going in there was no magic bullet but that the logic behind the treatment was sound. After 8 months I modified that to: I don't know if this treatment works if you have an acute retroviral syndrome, and if it does it certainly seems to take longer. I still think my doctor is one of the most giving and innovative doctors I've ever met, and just because it didn't work for me does not mean it didn't work for mike, patient 1, patient 2, and won't possibly work for others. Patients 1 & 2 are leaps and bounds better than they were when I first met them in January.
  5. garcia

    garcia Aristocrat Extraordinaire

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    Thanks for the update Joey. Tried to join that group to see how everyone was getting on but wasn't able to.
    Wayne likes this.
  6. bakercape

    bakercape Senior Member

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    I understand

    the doctors need for privacy. That makes sense to me.

    I don't really understand why the treatment is not being shared in an anonymous way.

    There are lots of desperate ME/CFS patients who might benefit. I don't think it is right to make a big story out of a treatment/recovery and then never share the treatment.:Retro mad:

    Is there a patent involved. Why the secrecy on the treatment itself?
  7. mojoey

    mojoey Senior Member

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    The treatment was being shared in an anonymous way until a few patients on Prohealth threatened to report our doctor to the Ohio medical board.

    The details of this treatment were of primary concern to these individuals because it is not a FDA-approved treatment and is completely alternative in its nature.

    Therefore, there is no way to talk about this treatment without risking the safety of our doctor.

    If there is a way to get around this, I'd like to hear it.
    Wayne and Min like this.
  8. sproggle

    sproggle Jan

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    Yes I'm also very interested in knowing what this treatment is. The Mike Dessin story was everywhere, such a dramatic story at that! I understand individuals wanting to remain anonymous but why on earth would an entire treatment plan be kept such a secret? I find it hard to take that sufferers are keeping treatments a secret from other sufferers....
  9. Wayne

    Wayne Senior Member

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    I think you would've had to have seen what was transpiring at ProHealth last year to get a better understanding of the need to be careful when discussing the neural therapy treatment that was so helpful for Mike. Mike Dessin was villified in such a way as to almost take your breath away. He was hounded and stalked, and egregious falsehoods posted about him and his family all over the internet.

    The ProHealth CFS message board was used as a platform from which to launch these assaults. Not content to just go after Mike, they began to make threats against his doctor as well. It was the reason the ProHealth board lost many of the members that were going there, and migrated over here to Cort's board.

    These treatments are not being kept a secret. If you look over some of posts made by Mike himself, by Joey, by Slayadragon, and others, you will find many points of reference to treatments. If you care to make the effort, following up on some of these posts/threads should greatly further your understanding of these treatments.

    Wayne
  10. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    merylg and Wayne like this.
  11. bakercape

    bakercape Senior Member

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    My problem is I often don't have the energy to follow up on things for myself. I guess it upsets me that it was made into such a public story with several parts. Part one was the suffering. Part two was the recovery but then no part about the treatment.

    I just don't have the mental energy to figure out the treatment from old posts. I imagine many others with CFS/ME don't have the mental energy to do the detective work either.

    I'm sorr the doctor fealt threatened but many doctors like doctor Peterson and Bell have fealt threatened and continued on in a public way to help us. I believe this is why we revere them so much.

    I believe there must be a way to publish the treatment and make it available to all. Often authors publish there work anonymously or using false names.

    I believe everyone has a right to privacy and not to be harassed/persecuted. At the same time I would think there would be some kind of higher moral principle involved that a treatment for CFS/ME should be shared with the other 17 million sufferers not just one small group of individuals or one doctor.
  12. mojoey

    mojoey Senior Member

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    Thank you Wayne and Lisa.

    Bakerscape--

    As much as I admire Peterson and Bell, they have always gone by the book--the book of traditional drug-based therapy. They risked shame and alienation from their colleagues when they decided to continue undeterred in helping CFS patients, but they never actually risked their license in the sense of going against everything the AMA represents.

    I wish there were a way around the privacy. I know more doctors are doing this type of therapy, so chances are other patients will come across them. At that point, should they choose to discuss their treatment anonymously there will be nothing stopping them from stepping up to the plate.
  13. alice1

    alice1 Senior Member

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    lyme literate doctors are in the same situation.trying to find one was next to impossible but i understood the need for secrecy.
    they're critisized by other doctors,watched by insurance companies,sued etc.
    for a doctor who works totally outside the box that is a professional who may be risking everything.not easy.
  14. Daffodil

    Daffodil Senior Member

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    i thought mike dessin did neuro something..i cant recall name..maybe im thinking of someone else.
  15. Forbin

    Forbin Forbin

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  16. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    One project I'm currently pursuing is interviewing all the recovered CFSers I can find, to create a record of their experiences. I think this will be interesting in itself, and hopefully will allow us to get a better sense of whether there are any commonalities with regard to how people have gotten well. Following up on them as time goes on will provide further information as well.

    Rich van K has been kind enough to introduce me to some people, and I've found some additional ones.

    So far, most of the people I've found have been willing to share their real names publicly. Those who haven't wanted to go that far have said that they're willing to talk privately to doctors etc. who are sincerely interested in their stories.

    If anyone has any leads on more people who have gotten to near or full recovery, I would much appreciate your letting me know.

    Best, Lisa
    Snowdrop likes this.
  17. garcia

    garcia Aristocrat Extraordinaire

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    Hi Joey,
    I understand the need to keep it private, but I don't understand the selectivity in who is and who isn't allowed to join the group. I have no interest in reporting anyone, certainly not a doctor who is willing to go the extra mile to help patients. Indeed I have campaigned in the UK for a doctor (Dr Myhill) who is being persecuted by the authorities for the very thing you describe (advocating non-approved treatments).
  18. helsbells

    helsbells Senior Member

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    I didn't get to join the group either. I was actually scheduled to do NT with a relatively well known Dr visiting the UK but it didn't pan out (not on my part) and I wasn't sure there was anyone else competent enough in the UK then the XMRV stuff sort of took of and I just didn't know what to at that point.
  19. biophile

    biophile Places I'd rather be.

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  20. bakercape

    bakercape Senior Member

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    From what I summized

    I thought it was a more compilcated or involved more than a generic Nueral therapy routine that you could find on Wikipedia.

    Also as pointed out above Dr. Myhill has put her alternative treatments on the web to share with the world. She has my respect for that as she risks herself to share her helpful treatments with everyone not just small group.

    I don't blame the doctor for protecting himself. If he wants to protect his economic livelyhood that's fair enough. But I do believe in the higher good. If I was a doctor and I had a treatement that I fealt could save lives or prevent suffering to possibly millions of people affected I don't think I would put my economic lively hood or med liscence above that. But that would be my decision and I'm used to not having much money or much of a job or career.:(
    peggy-sue likes this.

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