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Jen Brea: My ME is in remission

Discussion in 'General ME/CFS News' started by Dr Carrot, May 20, 2019.

  1. Dr Carrot

    Dr Carrot Senior Member (Voting Rights)

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    Joel, Simone, Skycloud and 36 others like this.
  2. TigerLilea

    TigerLilea Senior Member (Voting Rights)

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    You beat me to it, @Dr Carrot - I was just in the process of posting this same news.
     
    DokaGirl, alktipping, Andy and 3 others like this.
  3. strategist

    strategist Senior Member (Voting Rights)

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    Sounds very good. Almost too good. Let's hope this lasts.
     
    MeSci, diwa, Forbin and 15 others like this.
  4. Trish

    Trish Moderator Staff Member

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    I am very happy for Jen that her health has improved so much.

    I am also wary about what assumptions she makes about her specific case being applicable to other people with ME, or suggesting that CCI, and/or tethered cord are the cause of ME for a subgroup, as she seems to be doing.

    A couple of anecdotal stories do not prove anything.
     
    Alton, Naomi10, SarahandElly and 36 others like this.
  5. NelliePledge

    NelliePledge Moderator Staff Member

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    Think it’s concerning that if this encourages people with ME to raise this with their doctors they are going to get a blank stare and more rejection
     
  6. Perrier

    Perrier Senior Member (Voting Rights)

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    Many decades ago, DR Teitelbaum, in his book: From Fatigued to Fantastic, did raise the point that the ME could be due to CCI or tethered cord. So, it has been known amongst the early CFS doctors.

    I am not sure what to think of all this. Is ME / CFS just an end point? And is it due to some problems in the body? Problems which are different for different people? I just don't know what to think or what to do anymore.
     
    SarahandElly, Remi, Simone and 18 others like this.
  7. Mij

    Mij Senior Member (Voting Rights)

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    I hope this leads to investigating autonomic dysfunction for ppl diagnosed with ME.
     
    Remi, Simone, Ellie_Finesse and 14 others like this.
  8. Grigor

    Grigor Senior Member (Voting Rights)

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    Indeed fantastic news that she's in a remission. Amazing!!

    On the downside it's a little confusing for my brain fogged living in the dark severe ME self.
     
    Naomi10, Rain, MSEsperanza and 18 others like this.
  9. Joh

    Joh Senior Member (Voting Rights)

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    Jen Brea is answering questions on Reddit:


    Edit: Sorry this is so long, just posted the link :)
     
  10. chrisb

    chrisb Senior Member (Voting Rights)

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    There must be thousands of us who have thought, on dozens of occasions, that this time it has really gone. Time alone will tell.
     
  11. JES

    JES Senior Member (Voting Rights)

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    Recovered, whether temporarily or permanently, to me it's amazing news that someone with such a severe case of the disease has actually improved this much and the step charts really tell it all. Of course it's an N=1 case, but I reckon it's not likely there will be one treatment that works for the entire group of ME/CFS patients, at least not in my lifetime. I don't see it likely that this treatment will work for myself given that I already have experimented with neck traction without improvements, but it's still great news if even a subgroup can recover.
     
  12. TigerLilea

    TigerLilea Senior Member (Voting Rights)

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    I wonder, even though Jen Brea believes that she had ME, if she wasn't incorrectly diagnosed in the beginning and never did have ME?? Anyone else thinking the same thing?
     
  13. Barry

    Barry Senior Member (Voting Rights)

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    Ultimately ME is diagnosed by whether you meet a set of diagnostic criteria, and if you do then you have been 'correctly' diagnosed. Until we know any better diagnostic method, then that's the best can be done. There may well be all sorts of things meet the criteria - definitely confusing.
     
    Naomi10, Remi, Alison Orr and 32 others like this.
  14. Aroa

    Aroa Established Member (Voting Rights)

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  15. Stewart

    Stewart Senior Member (Voting Rights)

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    I think that's a perfectly understandable response in the circumstances. But at present we don't know what ME actually is - you're diagnosed on the basis of the symptoms you have, once other conditions with similar symptoms have been excluded. As Jen explains in the Medium post that Dr Carrot linked to, she met the criteria to be diagnosed with ME - and that wasn't just her opinion, but the opinion of many ME specialists that she met.

    Given all this I don't think you can say that she was incorrectly diagnosed. The question to ask at this point is "Is there a good case for including cervicocranial instability on the list of conditions that are ruled out before an ME diagnosis is given?"
     
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  16. Perrier

    Perrier Senior Member (Voting Rights)

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    DokaGirl likes this.
  17. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    I think we'll just have to wait to know what the implications are of this.

    On the upside this can be seen as a story of hope: that somebody who has been severely ill for years with the same diagnosis and symptoms as many of us, can make it to what seems to be a full recovery, that is pretty cool.
     
    Naomi10, Remi, Simone and 22 others like this.
  18. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    Perrier and Aroa like this.
  19. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    ME/CFS patients will probably ask a lot of questions about this. Some are desperate and willing to try everything. So it might be a good idea to gather some reliable information about the risks of these kinds of surgeries.

    If I remember correctly Jennifer herself indicated that this was not without risk and that there were complications in her case, requiring additional surgeries?
     
  20. Andy

    Andy Committee Member (& Outreach when energy allows)

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    I wish her the best of luck and hope that her improvement/recovery continues.

    Following my gallbladder removal early this year my functioning has improved (but not to any level close to 'recovery') and that has been enough to stir up all sorts of thoughts and emotions for me, so goodness knows what it's like for Jen.
     
    WillowJ, Naomi10, Remi and 43 others like this.

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