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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. Inara

    Inara Senior Member (Voting Rights)

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    What I mean: Normal ranges are not only a problem re. CCI, but in any other disease that is diagnosed via normal ranges, because normal ranges alone are unreliable or maybe even incorrect, at least for a subset of individuals. So saying "being diagnosed with CCI does not necessarily mean that there is a craniocervical problem" is extendable to any other disease, in principle. That's a problem. And I was wondering what's medicine's answer to that.

    Or, if you think that normal ranges in CCI are arbitrary, why aren't they when it comes to other diseases? I don't view the assumption of a Gaussian distribution as reliable re. reality, especially if many doctors don't really know its meaning. I mean, I assume there is not enough data to define a normal range using Gaussian - or any - distribution in CCI as was done for many other normal ranges, but for me, that doesn't make it unreliable per se, because the other normal ranges aren't necessarily reliable either. Altogether, I view normal ranges as problematic and there needs to be additional information that may lead to a certain diagnosis. But that will be obvious for you.
     
    Naomi10, MeSci, cyclamen and 5 others like this.
  2. rvallee

    rvallee Senior Member (Voting Rights)

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    Yup. We shouldn't have to take the lead on research and advocacy but have no choice, it would not happen at all otherwise. For the most part, even our families don't bother. This is a direct consequence of there being no leadership interested and medical institutions generally acting as prosecution against us, blocking progress out of principle because they don't want anything wasted on us.

    This leads to many broken paths but, again, not our fault. And while physicians generally roll their eyes and warn against alternative medicine, the "experts" dominating our field are literally pseudoscience peddlers. This is not normal and so obviously will lead to mistakes. We will make many mistakes and should not avoid doing things because of this.

    Whatever we do, even when we find success, there will be an outraged response from people who know, they just KNOW in their guts, that this isn't real and nothing will convince them otherwise. There's not much difference whether we succeed or fail, the answer is the same so might as well plow on.
     
    Keebird, Inara, DokaGirl and 8 others like this.
  3. roller*

    roller* Senior Member (Voting Rights)

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    they made it the mecfs-communities business.
    they went maximum public with their recovery-treatment.

    asking questions is not about making anyone "accountable".
    people sick with the same thing may want to understand what could have happened, and what of it may apply to them.

    going fully public via social media, but not showing supporting data - which they must have to make their claims - seems odd.
    imo even unfair.
     
    Inara and DokaGirl like this.
  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Supertiters of IgG antibodies mean that the balancing T-cell and NK cell mediated immune activity is decreased. This is a functional kind of immune deficiency that causes an unbalanced increase in antibodies.

    Yes, I remember reading that from Naviaux before. It sounds like flimsy speculation to me. The old idea of an 'imbalance' of immune responses, such as Th1 and Th2 never turned out to have any real basis as far as I am concerned.
     
  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Location:
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    Because of quality control. Physicians and radiologists and laboratory scientists work hard to publish papers that indicate the predictive value of tests precisely. The question with CCI imaging is whether or not that has been done properly. And if it has whether standardisation between entree is adequate.
     
    paolo, Naomi10, TiredSam and 6 others like this.
  6. Milo

    Milo Senior Member (Voting Rights)

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    People have a right to their story, and have a right to share whatever they want. They also have a right to control what they will and what they will not divulge.

    Nothing is owed to us.
     
  7. roller*

    roller* Senior Member (Voting Rights)

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    could such a much promoted public claim inflict damage on the mecfs-community ?
    "mecfs patients walk away with frankenstein-stitches and feel healed" ?

    i think they should really answer the (for some reason hard) questions by their fellow patients and bring the supporting evidence (lab tests) they have.

    evading answers and facts doesnt look good.
     
    Gecko and DokaGirl like this.
  8. duncan

    duncan Senior Member (Voting Rights)

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    With all due respect, not always, at least in terms of the precise thing. Or perhaps relevance? A test can be precise, but not good at evaluating what it is suppose to, is what I am trying to get at.

    Even taking this as a given, clinicians and researchers alike accept or discard ranges as their experience informs them - sometimes to the patient's annoyance. I recall a respected hematologist telling me I had a B vitamin deficiency even though I was in-range. She stood to gain nothing from telling me this, but her experience told her the range didn't really tell the whole story, eg, age might sway it etc.

    Not trying to be contrary; some of us live in the world of exceptions, and ranges appear different from that vantage.
     
    Keebird, Inara, WillowJ and 7 others like this.
  9. chrisb

    chrisb Senior Member (Voting Rights)

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    Nor does avoiding social niceties.
     
  10. Andy

    Andy Committee Member

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    I did search but I don't believe this has been posted already.

    Text of an email I received today - all bolding is Jen's.
     
  11. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    What happens after surgery? Does your head pop out more from neck/shoulders? Can you turn your head like a normal person? Like an owl?

    What are the potential complications?
     
    feeb and DokaGirl like this.
  12. Mij

    Mij Senior Member (Voting Rights)

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    For Jeff it was after a minor dental procedure that his neck symptoms began.
     
  13. Esther12

    Esther12 Senior Member (Voting Rights)

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    I think that there are legitimate reasons for people to be concerned about how the narrative around Jen's health is presented, given her role with ME Action, the danger of the media (and patients, friends, families) reading too much into anecdotes and the love of recovery stories (there have been a couple of people who repeatedly turn up in the media newly recovered from a latest treatment, only to seemingly fall ill again), etc, etc. It's good to raise these concerns, and hopefully an awareness of them will help avoid any needless missteps.

    At the same time I hope @JenB doesn't feel that these discussions, and people expressing their concerns, are overly intrusive or attempts at being controlling. At the end of the day it obviously just down to Jen how she tells her story, and I'm sure it's a bit odd for her reading other people expressing their views on something so personal to her. I was just reminded of the way celebrities can end up feeling like the public is claiming ownership over their personal lives in an unpleasant way and wouldn't want Jen to be left feeling like that.

    It must be weird being a semi-public figure on the basis of one's health problems, particularly when there is still so much uncertainty around everything.
     
    paolo, Keebird, hinterland and 32 others like this.
  14. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    my thoughts exactly. one thing I do feel is that she has gone *very* public with all this, very early (5 months after surgery). In the M.E. game, 5 months is nothing.
     
    Neli, MSEsperanza, TiredSam and 7 others like this.
  15. JES

    JES Senior Member (Voting Rights)

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    Actually Jen went maximum public not with her recovery, but with her illness long before that. Now when she already is a public figure it's a bit hard to back down. What if someone spots her hiking or jogging somewhere? Seeing a bedbound ME/CFS patient engaging in full activity would raise even more questions.

    It's now a couple of days since this story went out and I have yet to see any reaction whatsoever from the BPS or PACE crowd, or maybe I just follow the wrong social media accounts. Anyway, it doesn't worry me as I think they have only to lose in starting to speculate or question other people's medical diagnoses.
     
    Bherrin, Neli, TiredSam and 18 others like this.
  16. Perrier

    Perrier Senior Member (Voting Rights)

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    I thank Jen for all her heartfelt and intelligent writing. Thank you Jen.

    Is it possible that after the thyroid surgery, and having her head bent back like that during the procedure, the symptoms could have started to appear? It could have been a weak spot in her body, and then bending her head back just did it. I haven't a clue. But this is a remarkable story.
     
    MEMarge, JaneL, MeSci and 4 others like this.
  17. JenB

    JenB Senior Member (Voting Rights)

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    Just wanted to chime in to say one thing, maybe two!

    I’m not evading questions. There’s this thread, the PR thread, 400 emails in my inbox I haven’t responded to, a few hundred reddit comments, FB comments, Twitter mentions, etc. I am trying to answer as many questions as possible and so am erring on the side of answering what is easy to answer quickly and collating more complex questions for possible future articles, which are a much better format for presenting information. I also tend not to answer questions that have already been addressed in my previous Medium posts. I know it’s a lot to read and I don’t expect anyone to dive that deep, but it’s there (with more to come) for anyone who wants a better understanding of all of this.

    One thing I do want to nip in the bud quickly are factual inaccuracies.

    @Hip it’s actually not the case that my PEM took weeks to disappear. It was gone as soon as I woke up from surgery, just like the POTS, but came and went with post-surgical swelling. (I am not going to elaborate on this right now but will in future posts.) There’s a lot of guessing re: timelines and cause and effect, so that’s something I will try to address in a future post.

    Re: labs, I’ve shared my past history pretty extensively. Not values but +/-. I could do the former but it feels creepy and would probably be in a case study, anyway. I haven’t done any “post” testing to see what’s changed yet, so there is nothing to report.

    Yes, Valcyte did help. I note which symptoms it helped with in the tables in the original article on this thread (scroll all the way to the bottom). One of the very awesome outcomes of surgery is I no longer need to take Valcyte or any of my other meds (besides thyroid meds, of course).

    And as someone wrote, it is absolutely right that I came out now because I am out and about in public and don’t want people to think I can do these things and still have ME. Right now I am in Hawaii at a wedding between two PwME that will have many PwME attending. I didn’t want to have to hide or lie and I didn’t want the community to find out about my recovery via rumors. I waited to announce until a) I was reconditioned enough to push myself (e.g, walking 8000 steps in one day, lifting weights for an hour, doing an hour of aerobics, etc. being in loud spaces with multiple sources of sensory input) so I could be certain that the crashing was truly gone, not just that my energy enveloped had expanded and b) the last possible moment before the cat might organically come out of the bag.
     
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  18. JenB

    JenB Senior Member (Voting Rights)

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    And thank you @Sasha for expressing that empathy. This has been a very hard thing to do but I have been just so moved by how sympathetic and generous the response has been. I honestly was expecting something quite different. It’s been really wonderful.

    As for disclaimers re: surgical risks, etc. I have already framed surgery as involving risks across numerous articles and have also described some of my own post-surgical complications (the surgery itself was A+). I have publicly grappled with the possibility of death (due to this surgery) and shared an article about a young woman who did die in Seattle due to a poor operation and the surgeon’s inability to listen to the family/patient when things went south.

    You cannot help but in a very real way confront the risks if you decide to go down this path. My surgeon makes you sign numerous papers re: risks, affirming the reasons for this surgery and that this surgery isn’t meant to resolve your systemic symptoms. This isn’t a supplement you can impulse buy on Amazon. I mean, I guess you can decide not to read the papers you sign and not to listen to what your surgeon tells you, but that person isn’t going to listen to me either. My surgeon also makes everyone do a social/psych eval and has decided not to go forward to surgery with patients whom they felt didn’t have a home environment that would allow them to successfully recover (but have worked with said patients to try to put together a plan). He also doesn’t operate on people who are mildly affected because the risk/reward ratio just isn’t in favor of surgery.
     
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  19. JenB

    JenB Senior Member (Voting Rights)

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    440
    Yes, that is exactly what happened to me, Perrier.
     
    hinterland, MEMarge, Perrier and 12 others like this.
  20. Guest 2176

    Guest 2176 Guest

    I’m pretty sure that’s the outcome everyone wants. However, I simply don’t think this is that easy. Would this study be done by the neurosurgeons, who are already busy doing surgeries, or would it be done by the internists who sent patients to these neurosurgeons? People have been in contact with Michael Van elzakker about adding screening for cci to His study doing brainstem imaging, but very few research centers have upright mris, and he has struggled to fund the already impressive work he ian doing without adding a new component. Despite what you say about results like this justifying followup, I do not think this is how science works. It is subject to the same rules of political economy as other former fields, which means that whether or not a study will get done isn’t based on whether it should be done solely.
    It seems like Jeff ans Jen are very interested in a study following up on this. All of us who are diagnosed with cci and wish there were non surgical options and more info about its relationship with ME/CFS probably want this study to happen too. But that doesn’t mean we can do anything to make it happen.
    Or a third option, that it is a selection bias or some other problem with the sample. I don’t personally believe this , but it is a possibility to consider. It’s still a pretty small sample, although there was a formal study of cervical issues in fibromyalgia with a much larger sample that yielded similar percentages.
    I don’t know that this would be easy to make happen. While I think the surgeons that diagnose and do this surgery are good people, ME/CFS is not in ther realm. In fact, it’s my understanding that they have told ME patients not to have expectation that their symptoms from ME would improve with surgery. So if they are generally busy with thriving surgical practices and this field doesn’t pay much, nor is it in their purview, why would they do this study? I know that peter Rowe published a case study of people with a similar result after cervical spinal stenosis surgery. So it’s possible. But I still see practixal impediments. Which is too bad, as I’m pretty sure we all want more research into this.
    I’m fairly sure that Jeff and Jen, as well as many others, have been clamoring for more research on this.
    If commonly used anaesthetics could trigger a remission I would expect more remissions after minor surgeries or after people trying anesthetic agents outside of surgery. I’m sure someone has tried propofol or versed and many of us have tried ketamine with no results.

    I don’t think the comparison to rituximab or LP is at all apt for reasons I shall elaborate on in a separate post when I am less crashed. Currently this post is taking a lot of energy for me to write and I am only doing so Bc this subject is so important.

    If Jeff has never published his personal history, then Jen May never have known she had this issue, nor other patients. And f Jeff or Jen hadn’t published personal histories, no scientist would be looking into this.

    I made sure to look at the rules and didn’t see anything banning discussion of personal histories although I may have missed something due to brain fog I don’t think that discarding anecdotal evidence entirely is scientific. Nor do I think that expressing disbelief toward every remission just because some remissions due to some treatments were not replicable is really empirical. I think that skepticism too often becomes skepticism as a reflexive affect rather than just “rigorous empiricism” Automatic disbelief toward experiential data is no more rational than automatic belief of it.

    It’s a small field and everyone is busy working on their underfunded projects and defending their own theories to just leap into researching something just because one patient said so. But now there are many.

    I know that the standards for clinical evidence and research evidence are different for obvious reasons. But the idea that a test which is used by surgeons as a routine way to diagnose this issue bears no weight at all seems absurd to me.

    All in all, it seems like one of the main impediments to research here is that a placebo controlled trial would be extremely difficult and also unethical, for cci treatment. However we can start by just a biomarker study screening dxed ME patients for cci.

    One way around this problem is to have it be a trial that’s non placebo controlled but has objective measures as well as subjective ones. Activity is a good one as long as sustained. Placebos can’t yield a sustained increase in activity in true ME patients, emphasis on sustained. That’s why jens days with regard to her activity is so interesting. Tracking immune response, viral titers, and other biomarkers agter trestment also makes sense.
     

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