The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

But we don't yet understand the pathophysiological mechanism of PENE. It's pretty subjective at this time, would you agree with this?

 

That language isn’t used but a similar kind of thinking happens all the time in medicine. This is because a single case is never “science” in the sense that it can never be subject to the tools of statistics. We can’t randomize an individual case to different groups and make inferences based on average treatment effects. I am a single case and I can never view the alternative to the interventions and outcomes I’ve had. All my doctors (and I myself) can do is make reasonable inferences based on some combination of the science of other samples, which may or may not apply to me, their clinical experience, and their direct observations. This is why medicine uses science but is never in practice a science. It can’t be. It’s also why people get second and third opinions. (“Reasonable doctors can disagree.”)

And even if we did that experiment on some sample of other patients, it could never prove or disprove what happened in my case. It might, however, shift the “balance of probabilities.” I’m not sure what that means but yeah, if there were a big study (which could never be randomized, anyway) that somehow showed this surgery had no effect on PwME w/ CCI, I would need to update the weighting of probabilities in my own case (I mean this in a Bayesian sense). In the absence of that, all I have is the evidence within my own case, which in my opinion and that of my medical team is pretty damn compelling.

And yes, we absolutely need people to study this. This cannot happen if we don’t talk about it.

 

Yes it is subjective but it is also defined subjectively. By that subjective description of PEM in the ICC, I had it in spades and now, I now longer do. This is the only claim I have made. I don’t think it’s reasonable to say that because PEM is defined subjectively we can’t talk about the one symptom we, by definition, all share. Almost all of our symptoms (headaches, sound sensitivity, GI problems, pain) are subjective

I walked 18,000+ steps on Monday and climbed the equivalent of 67 flights of stairs (we did a 3.4 mile hike up to a waterfall in Kauai). I don’t know how I can leave PEM out of it. I am not going to pretend that I still have the symptoms of ME when I do not.

 

@JenB maybe I'm misunderstanding you, are you saying PENE is a symptom?

You also wrote that you knew when you awoke from surgery that you no longer had PENE. Could you elaborate a bit as to what you meant by this?

 

Nasim, you should check out the complete list of symptoms I had prior to my surgeries and the effects of all my treatments (surgical and non-surgical) on these symptoms. It was much more than PEM and POTS. I had muscle fatigability which improved but was not eliminated with Mestinon (this should not be surprising given acetylcholine’s role in peripheral muscle activation). I cannot explain how the fusion permanently eliminated my muscle fatigability but I have some ideas.

I know this is confusing but I actually think there are reasonable explanations for all of this. More soon.

 

I will in future writing on Medium.

 

I'm sorry but I just can't accept that "reasonable" is appropriate here, it's only one step above "plausible", which is how all kinds of useless / dangerous quackery gets a free pass.

"Balance of probabilities" is a standard used in civil cases, basically more likely than not, above 50/50.

Well "pretty damn compelling" does sound better, and I look forward to you and your medical team presenting all the evidence so that others may form a view.

I get it that you have good reasons to talk about you experiences now, and that's fine. I also appreciate that you aren't recommending surgery for anyone, that this is just a worthy avenue of further investigation, that you aren't making the same claims that Jeff is making. I'm also delighted with your recovery.

I don't think anyone is suggesting that we don't talk about it. The concerns raised in good faith by posters on this thread don't deserve to be characterised as people telling you not to talk about it.

 

About xyz
Imunologist have me under Lupus in remission at the moment ( that moment last for 20 years now) just to put me under exams and regular checking once a while . There is no ME in her book.

 

I don't understand what you mean by no ME in her book.

 

Yeah, I agree that that legal concept has no role here.

Someone did just say that I shouldn’t talk about PEM. Others have said that I should not have come out with my story, worried primarily about its impact on others or on the movement. So yes, some folks are concerned with me even talking about this.

It’s hard to reply in general to so many different specific questions and concerns. Just as Jeff and I are not the same person, I am sure everyone here is probably coming at this from different places of concern. What I will say is that I find this conversation useful and completely reasonable. My main concern is people a) assuming that I am saying what I have tried very hard NOT to say or b) filling in gaps in information that I have yet to provide with supposition. I really do appreciate everything you have said here and my only point with “reasonable” was to say that I don’t think anything I say will conclusively prove anything—it can’t. Just that there can be multiple plausible (if that word is better than reasonable!) interpretations of the evidence. And that based on that evidence (which again, I haven’t finished presenting) I don’t agree that I can’t say that CCI was causing my ME symptoms, but I wouldn’t think it was unreasonable if Trish disagreed and found my interpretation of the evidence implausible or unconvincing. LMK if I used the right qualifiers!

 

Well I had to look up LMK in the urban dictionary and the double and triple negatives are doing my head in. I'll have another look at it after I've had a lie down and LYK if I spot anything amiss.

 

@JenB

Are you planning to get any genetic testing done related to EDS?

 

Where does all this leave me jen? A mum in the UK with no way of finding out if I have some messed up spine?? A gp who still proposes I have 'functional' issues... I feel lost.

 

Can I ask you, in a friendly way, if a tiny wee part of you thinks you may have been misdiagnosed? I am just bewildered and wish you well, but I am just so battered by this illness for so long, the fact it could be resolved mechanically is truly surreal and bizarre. Do please get in touch with ME specialist/neurologist Abhijit Chaudhuri, he is a lovely man, I have met him, I think he would be fascinated by your case if it is, in fact - against all the odds! - a recovery from ME. Am sure Charles Shepherd of MEA whom I think you met during UNREST publicity in UK could get his details for you. I can't help but think you were misdiagnosed - but how could that even happen, I know you had confirmation from several specialists? - but if I am proven to be wrong, I will apologise a thousand times.

 

Like code for illness. They have a book of codes and they must put it in diagnoses.

 

Yes, I am unsure how anyone with ME could wake from surgery *knowing* they no longer had PEM/PENE as it typically occurs post-exertion. Every morning when I wake up I feel battered all over, is my normal. Now, if I were to wake up, for whatever reason, feeling not battered, it would be a wonderful surprise, but I would certainly need to wait a few days - or weeks - at least, to think PEM had remotely gone for good.

 

The impact that the placebo effect can have depends on the type and degree of illness. Just for the sake of example, a paraplegic isn't suddenly going to walk just from the placebo effect of receiving a pill that claims to cure paraplegia. Likewise, if a placebo surgery was for example given to the severe ME/CFS patient group that Ron Davis is studying, I doubt they'd be up and running no matter what the time frame. The reports about rapid improvement in certain easily measurable symptoms such as a lowered heart rate when standing makes me skeptical about the degree of placebo effect possible.

 

I will for the sake of due diligence and to see if a genetic expert might have something more to add to my understanding of my case. However, the waiting lists are quite long and so it will be some time. Also, I don't have any symptoms related to any of the identified types. Given this, I do think it's quite likely that if I do have a genetic connective tissue problem, it's a risk factor rather than a total explanation, and is unlikely to be one of the genes that have been identified. Also, most EDS patients with CCI have hEDS (in part because it is the most common), and for which there is no genetic test, only a clinical diagnosis (whose criteria I miss by a thousand miles).

 

Just to add to this, when thinking about the placebo effect, one has to think of the effect size. It's one thing to have 80% of a modest improvement in symptoms in a drug trial be due to placebo, quite another to have complete remission of symptoms. I've gone from 40 to 90 on the Karnofsky scale and expect to be at 100 once I am completely done healing from surgery. The level of athletic activity I am able to sustain I also have a hard time seeing how it could be due to a placebo effect, especially given the number of surgeries and invasive testing I have had that did not have any effect on my symptoms.

 

I know and honestly I have no easy answers. I think what I can say is that this might open up a new area of research or connect to the brain imaging/neuroscience research already underway in interesting ways. My case + the six others offer no immediate answers but may in time help us better understand this disease and/or how to better refine the diagnostic criteria/process.

Think of me also as an experiment that went well, but not necessarily one anyone else should repeat until we have more evidence unless they have a clear diagnosis of craniocervical instability and other context (symptoms, severity) that make them a good candidate for surgery based on already established criteria.

The faster we can do research in this area, the sooner we can begin to make recommendations (if any) and fight for access to better diagnostics for CCI and other conditions that can cause the symptoms of ME.