Jen Brea: My ME is in remission

[Inara]

I don't really understand what you are querying. Marky asked if being diagnosed with CCI means you have CCI. I was pointing out that the definition of CCI may be both arbitrary and subject to unreliability from place to place or scan to scan.

The diagnosis of CCI will depend on an arbitrary cut off considered normal. The question is whether the cut off has been put in the right place

But this is a problem with every normal range.

Exactly, so being diagnosed with CCI does not necessarily mean that there is a significant craniocervical problem ('CCI').

But then being diagnosed with anything doesn't necessarily mean something

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.

 

[rvallee]

What throws me back is that patients themselves influence others to obtain a diagnostic test or a treatment. We have seen this over and over throughout the years, and there are a few reasons for this:

- The lack of physicians or medical specialty looking at ME patients on a daily basis.
- Patients that have been burnt so many times by unknowledgeable or unwilling to investigate physicians
- Patients sick so many years, unable to pay for health care that is not covered
- Seemingly the lack of legitimacy of this illness has amongst physicians.
- There seems to be a lack of leadership (though this is changing) from physicians and researchers and perhaps a lack of traction with their peers, and most clinicians work in silo.
- patients reading science litterature and experimenting on themselves.

So patients end up doing their own things to save themselves. Occasionally or rather rarely patients go on to get better. Often times there is a skepticism from their peers when this happens.

But in the wider medical community, this is not how things usually work. When there are discoveries, the communications happen through scientific publishing and through conference presentations. This triggers further hypothesis and funding bodies allocate money to research that particular hypothesis formally.

That system seem totally broken for us. Moreover, there might be several years before science can determine whether there is a correlation or a subset of ME patients that have CCI. That wait time is not necessarily attractive to patients who have been sick for decades.

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.

 

[roller*]

My comment suggested indeed that it is none of our business, and if these individuals volunteer this information, that’s ok but they should not be obligated in any way to provide further infomration.

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.

 

[Jonathan Edwards]

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.

 

[Jonathan Edwards]

Or, if you think that normal ranges in CCI are arbitrary, why aren't they when it comes to other diseases?

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.

 

[Milo]

going through social media, but not showing supporting data

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.

 

[roller*]

Nothing is owed to us.

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.

 

[duncan]

Because of quality control. Physicians and radiologists and laboratory scientists work hard to publish papers that indicate the predictive value of tests precisely.

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.

 

[chrisb]

evading answers and facts doesnt look good.

Nor does avoiding social niceties.

 

[Andy]

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.

As many of you know, my journey beyond Unrest has been tumultuous. Nearly one year ago, in June of 2018, I underwent a thyroidectomy due to cancer. I never could have foreseen the series of events that procedure would set in motion.

As a result of my thyroidectomy, I was bedbound for months and developed a host of new and debilitating symptoms. After a range of specialized tests, I received a new diagnosis: craniocervical and atlantoaxial instability (CCI / AAI). In short, this means that my brainstem was collapsing into my spinal column. The solution? A fusion of my C0 through C2 vertebrae, to create the structural support my skull and brainstem were lacking. In November, I underwent neurosurgery and in December and January, had spinal surgeries to correct tethered cord syndrome.

To be honest, the recovery process has been brutal; it included months in the hospital and levels of pain I have never experienced before and hope to never experience again. The gift of these surgeries is that I can now say to all of you: My ME is in remission. I no longer meet the criteria for myalgic encephalomyelitis. I am asymptomatic and no longer need my ME medications. I have not used my wheelchair in seven weeks. I can now walk for exercise and enjoyment and not crash. However, this doesn’t mean I am 100% -- I am still recovering from the surgeries themselves, a process that will take at least twelve months.

I have written about these milestones in greater detail via Medium. If you wish to do a deeper dive with me, this article is the starting point. For a more detailed explanation of my ME's remission, click here.

So what does this mean? To start, it was important for me to share this with all of you; many of you have been on this incredible journey with me for years and years, supporting me through joyous highs and darkest lows. You have championed Unrest and drove forward the #TimeforUnrest movement. Because of you, Unrest has reached thousands of people all over the world, forging new relationships; connecting families, caregivers and allies with people with ME; and inspiring scientists, medical providers and policymakers to join us in effecting lasting change for all those impacted by ME. Unrest changed my life and I am profoundly grateful to each and every one of you.

From a medical standpoint, my ME diagnosis was accurate. I just never imagined as an acute, viral onset patient, that my symptoms could have a structural, mechanical cause. If my symptoms could be the result of a mechanical mechanism -- brainstem compression -- how many others might have a similar issue? And what is the root cause of all of this? I know that CCI caused my post-exertional malaise (PEM) and other ME symptoms. I can never know why I developed CCI in the first place. Recovery from ME is something I never thought would happen for me personally without many more years, even decades, of research.

We've seen over and over again that ME is an intricate and complex disease. I do not know if this remission will last. I have no idea what my surgeries and remission mean for other people with ME. I am just one patient and this is my story. But, my story of remission makes it even more clear to me than ever that we must fight for research to better understand the mechanisms underlying all cases. With my improved health, I will continue to fight for equality, dignity and better care; to challenge stigma and advocate for research dollars and medical education. I will not give up. I am in this fight until every person living with ME, no matter the cause, has access to diagnosis and care.

Unrest has been the catalyst for a vast amount of positive change in my life -- and in the lives of others. You, the Unrest community, are the true heroes. Without you, none of this would have been possible.

In solidarity, now and always,
Jen

 

[Jaybee00]

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?

 

[Mij]

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

 

[Esther12]

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.

 

[InitialConditions]

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.

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.

 

[JES]

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.

 

[Perrier]

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

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.

 

[JenB]

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.

 

[JenB]

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.

 

[JenB]

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.

Yes, that is exactly what happened to me, Perrier.

 

[Guest 2176]

If there is a genuine link between CCI and ME symptoms then it is crucial that it is properly documented and the treatment is tested in a reliable way.

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.

The finding of CCI in 17 out of 24 cases getting cervical imaging either means that the majority of people with ME have CCI or that the test is unreliable.

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.

t is essential that we know the answer to this. So it is essential that the findings are published. The doctors who made these assessments are ethically obliged to make public the nature of the findings. They are also ethically obliged to repeat the observation on blinded cases and controls. Drs Fluge and Mella worked hard to check their observations. In comparison this would be easy.

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.

If you want to further the cause of research into ME please make it clear to your surgeons and those involved in imaging that we need the objective data published and without delay.

I’m fairly sure that Jeff and Jen, as well as many others, have been clamoring for more research on this.

Without that I have to conclude that the most likely explanation is that recoveries after cervical surgery do not indicate that cervical surgery has any specific action, but that recovery is for other reasons as for the rituximab and LP cases. If we knew what the other reasons were life would be simple, but at present we have no idea. Maybe anaesthesia can trigger a remission

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.

I think both from scientific and personal points of view discussion of personal histories here is problematic. With respect, I would personally recommend posting nothing about personal histories until a publication is out. If this is real it justifies publication in something like New England Journal of Medicine, where peer review is still reasonably reliable. If there is reliable evidence here it would justify publication urgently - say within six weeks.

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 don't think the traction test tells us anything useful I am afraid.

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.