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

Oh that would be great! I missed that. I will reach out.

In theory it is. In reality, vast majority of patients are never referred for imaging.

 

Hi @JenB totally understand if you are busy replying to what must be quite a time consuming task answering queries on this subject and others on the various places that you visit. My questions are above for info (typos included). You replied but didn’t quite answer the questions but asked me a question to which I replied but I got no further comment.

That wasn’t the main thing that “made me firmly of the opinion ....” it was the slow revealing of information by both yourself and Jeff directing members on this forum and other places to your medium page and Jeff s interview and advice site. It also appears that multiple platforms have been carrying the same message and there appears to be coordination between yourself and Jeff ahead of this news release. The constant references to further chapters to come I took to be a teaser campaign....where one breaks up the story and releases parts gradually to build up a following and drive repeat visits to sites etc. That is pretty much what led me to the conclusion that this was a campaign and I’m still of that opinion.

I think there are many posts explaining this from me and others but the main one is a lack of objective evidence meaning that some of the claims you have made are too soon to call.

One of the key things I learnt in my field (not medicine) was that we are all subject to bias and that taking assumptive leaps normally ends up with egg on your face if you don’t scrutinise the hell out of your idea. It’s not about concocting a plausible answer to all likely objections as if it is a debate...it’s finding scientific proof for what you say and understanding what’s missing so you can put context to your hypothesis and admit that further work is needed to give support to the idea. There is a bit of a formula to testing the logic of the idea, generally turning it over looking at it from different perspectives, trying to root out other reasons for what you see etc etc. It’s also admitting you may need a study to disprove your idea and move you on to other explanations. This is the scientific discipline of validating ideas before they even get off the blocks. It’s also realising that each evidence citation needs to be good science and that many research papers out there are just sausage machine junk, so choosing the quality of your back up evidence is important too (crap in, crap out etc.)

What I have seen so far is not scientific in this way and others have repeatedly pointed out the various flaws on other posts so I’m not going to list them all here.

That in no way invalidates your n=1 experience and if anyone can scramble out of the hell hole and go hiking that must be celebrated. I only wish you and Jeff best wishes for this. Nor does it negate the need to gather more evidence.

It’s more about making claims that are difficult to justify from the available evidence right now ...and more importantly whether this may mislead. That is what is unscientific.

I fully support what you have done with Unrest and raising awareness and calls for more research ..I bought Unrest and encouraged people to watch it. I don’t always agree with all aspects but in the main it is a force for good. The resilience and determination in the face of adversity from yourself and other campaigners is always something that inspires me and makes me proud of our community.

I have an open mind to most things but it would be easier to assess this idea with all the story not just the drip feed. I would encourage this to happen sooner rather than later. I would also suggest as before that a cautious approach is taken putting a realistic context to allow PWME to make an informed decision on whether they may have CCI,bearing in mind the celebrity endorsement effect that you are unfortunately cursed with.

I certainly find the advice given by Jeff on his site extremely disturbing and worry about the implications for people desperate for an end to their illness.

Sorry for the delay responding ..I work during the day and don't have much cognitive stamina left at the end of the day.

 

Hi @arewenearlythereyet I am pretty sure I replied directly to your post and explained why I am not concerned re: media. I am sorry if I did not.

Re: Carol Monaghan I am not really directly in touch with her—she is in touch with our UK coordinator and UK and Scotland volunteer teams. Her primary job is to represent and respond to her constituents.

I will respond to your comments when I am back at my computer.

 

@JenB
Dear Jen,
For all our sakes, patients and parents, would you consider approaching Dr Davis and asking him to do the stress test on you, even now. He has found it to be positive in the severely ill. Too bad you did not do it earlier but I know it was for those in the research. Your experience is important.
He would be interested, I’m sure. Maybe someone like Mattie or someone considering the surgery could do it, if he felt you might not be suitable as you are not ill. This whole thing is too important. We need to know if folks like you and Jeff are a subgroup or what. The severely ill, as you know, are not on the internet. They are in dark rooms struggling every minute.

 

I have asked many people re: doing this test (and others) pre and post on patients planning to have surgery. I’ve done all that I can do. We’ll have to see what the researchers and clinicians decide. The nanoneedle also needs to be validated—it’s early days.

Re: my doing the test now, it hadn’t occurred to me since there won’t be anything to compare it to. I can certainly ask.

 

What I have seen so far is also not very scientific, and I am not talking about Jen and Jeff's story, but the responses to it on this thread.

Science moves forward through curiosity, receptivity, enthusiasm, imagination, creative lateral thinking, which results in hypothesis creation and hypothesis testing. It does not move forward when cold water is immediately poured on a new observation, or when an interesting new phenomenon is dismissed without further thought. A scientific response to Jen and Jeff's story would be one of enthusiastic brainstorming, to try to understand what might be happening here; rather than instant skeptical dismissal at the outset.

If you read anything about the psychology of the brainstorming process, you will know that the one thing you do not do during a brainstorming session is criticize any ideas or suggestions. There is a time for criticizing ideas and considering them in a sober more skeptical light, but if you do that too early, you kill off all the creative energy of the brainstorming process, a process whose purpose is to make lateral connections and creative leaps.

 

if it was a misdiagnose, how can the patient be blamed for that ?

though, nobody is questioning those high fly doctors or the system or the mecfs disease in general.

this all should raise more questions than calls for research.

 

what, if a patient gets so objectively and measurably better ?
and obviously was misdiagnosed.

should they get their fees back and compensation on top ?

does even the mecfs community give them once more "green lights" for whatever havoc and misery they cause ?

 

why not bring dr kaufman and chaudhuri in contact ?

so that they figure out for us what went wrong.

would seem a more plausible and enlightening process to me.

 

I do not understand the tendency NOT to assume misdiagnosis of an individual who clearly has met all the criteria for ME/CFS, but has recovered.

These people are, currently, some of our most useful sources of information for trying to identify the sub-types and/or missed diagnoses that come from even out most stringent of criteria. As I said previously, I had my gallbladder removed and improved, but given I still have ME symptoms, I consider that I had ME as well as the issue with my gallbladder. Now, if I had complete and ongoing remission from my ME symptoms, seemingly solely due to having my gallbladder removed, then I would consider myself first and foremost as someone whose correct diagnosis was missed, even though any of the diagnostic/selection criteria would confirm I have ME.

Confusingly, after watching the latest Solve webinar, you say

where you encourage assessment of people's description of their symptoms as a means to identify sub-types - these are people who have received an ME diagnosis and therefore, on the basis of your argument above, as I understand it, the researchers should just be accepting that all those patients have ME, and should be treated in the same way.

So to address your accusation - I have no idea what "real me" is, I have no idea if I have "real me" and I have no idea who else may have "real me", but I know we need to understand if the actions that one person took which may, or may not, have lead to an improvement in their symptoms would be appropriate for others to take i.e. identify, as best we can, the particular ME sub-set, or missed diagnosis, that the person in question had.

 

What are the specific symptoms? I don't suffer headaches or neck issues (except sometimes when I drive my neck is stiff, but this has always been the case). Also, I have really good days where my symptoms are very minor - how would this be if there were some big structural issue? Thanks so much for replying to me too - I really appreciate it!

 

I'm sorry you took a different perspective as an accusation. I believe the argument of why the assumption can't be made is clear in my post. There is no firm ground to assume anything. For example, the assumption that gallbladder removal means your were incorrectly diagnosed ignores the possibility surgery or gallbladder removal could remit ME or the gallbladder problems could cause or create ME. This is even more apparent in the CCI cases, since the symptomology are argued in this thread to be starkly different.

As to my comment in another thread, I don't see the contradiction. I certainly don't see how or where I argued all patients should be treated the same way. In literally the same comment you quoted, I noted that a patient benefited from high dose iron therapy and that he may be related to those with iron problems.

As to the last part - I agree, which is why we shouldn't assume someone who recovers didn't have ME. We simply don't know enough to say that.

 

Agreed. The placebo in rituximab trial reducing fatigue scores a ton is one thing but I doubt any placebo could consistently produce a *sustained* increase in physical activity over long period of time. Especially something that’s energy intensive like surgery

 

Corticosteroids essentially. I am assuming you are on them, or you are still in the elimination half life phase? I am not saying that is what is happening, I am giving an example. Plus, there's the endogenous increases in adrenocorticotropic hormone post-surgery.

You quoted me I think accidentally. I am glad you are improved. Steps are not an objective measurement in this case because they are subject to "effort".

Are you working 40 hours per week? Because that's required for a Karnofsky score of 90.

I know nothing about their heart rate variations, it is subject to both exclusion observation bias (omitting result) and really even anticipation bias. But I am sure you know that already.

Right, I meant 50% of people reporting improvement not 50% improvement, it would be 50% reporting about 30% increase.

 

I have been following this thread with interest. What I don’t understand and hope someone here might be able to provide information about is whether it is accurate that CCI can only be accurately diagnosed by a handful of doctors worldwide? And, if that is accurate, why that is the case if diagnosis and treatment of CCI has been established for some time? (And if it is not accurate, why is that what is being reported?)

I am writing as a severely ill patient diagnosed with both ME/CFS and EDS; as someone without a strong science background and with severe cognitive symptoms, who is nonetheless trying to keep up with what is going on well enough to make wise medical choices.

I appreciate the work Jennifer Brea has done to advance ME/CFS advocacy, and am happy that her health has improved, and that others have had improved health outcomes also.

However I have concern about the possibility of CCI surgery being performed in cases in which it should not be. I have read that some think that no surgeon would perform that surgery unless it was clearly medically necessary. I am genuinely very happy to hear that some people have had such positive experiences with medical professionals that they believe that.

Unfortunately, I have had very different experiences, despite the fact that I have been ‘fortunate’ enough to see expert doctors and specialists at very well regarded medical institutions. I have had multiple doctors offer me treatments, including but not limited to rituxan, that I do not believe were appropriate for me, without caution/full disclosure/appropriate consideration of my complete health condition.

Of further concern are the numerous lawsuits against at least some of the doctors who perform the CCI surgeries which allege exactly that issue: that inappropriate unnecessary surgeries were performed.

The idea that I have to trust the a handful of surgeons, said to be the only ones who have the expertise to interpret the necessary imaging, to tell me whether I need irreversible surgery; when those same surgeons stand to financially gain from that surgery and have numerous lawsuits against them saying that they performed unnecessary surgeries, is unacceptable to me.

For what it’s worth, I researched CCI surgeries years ago in relation to EDS, before there was any discussion connected to ME/CFS, and had serious concern at that time also.

I think that I am part of the population people on this thread are concerned about: so ill that I am desperate and have difficulty understanding all the scientific developments, with enough resources to possibly access medical treatments discussed. I appreciate that you are providing information here and are looking out for individuals who could be potentially harmed by inappropriate treatment.

I also appreciate everyone for sharing their experiences, including those who have had good outcomes from CCI surgery.

I know that this topic hasn’t been an easy one, but I think that it is extremely important to continue to share information on it despite that fact, and I hope people will continue to.

 

As I wrote in the beginning, this would be a slow process of updating folks on my symptom progression and laying out the story. This is in part because recovery is a process. It’s also because as I’ve gotten feedback from the community, I have received new and different ideas regarding what questions to answer, what gaps to fill in, what misconceptions to address. It’s daunting for me to write all this. It is daunting for others to read all this. So it comes in drips. Lastly, as I saw the number of events, conferences, etc. I would be attending in the coming weeks and months, and as I made dramatic progress in physical therapy over the last eight weeks, it became evident to me I had to “come out.” It wasn’t like I had at that point pre-written all the posts I am about to write and could dump them in unison.

Yes of course. I am on Twitter, Facebook and several other platforms.

In general, that’s a great idea! I wish I had taken this approach to launching Unrest or any of a number of things I have done. I honestly did not think about this. The short posts are for my own convenience and to try to simplify things for people dealing with cognitive issues. I’m big on detail and so tend to get lost in really long posts and tend to lose other people.

The reason I keep saying “more to come” on this particular forum (and not really anywhere else, TBH) is that there’s more critical engagement here than anywhere else and with it, more suppositions that really don’t fit with the facts of my medical case. I don’t want people to think I am ignoring them and I also want them to know that I am going to explain at least some of the pieces that, at present, seem confusing or discordant. It has nothing whatsoever to do with “creating suspense.” It’s that I don’t want to spend three hours writing a detailed and referenced comment twelves pages deep in a forum thread. That is what these blog posts on Medium are for.

But I have done this so far in nearly all of my writing. I am constantly saying we need more research and try very clearly to distinguish between my personal case, conjecture, and what has some research behind it that generalizes beyond my case (such as the intracranial hypertension research which yes, is early, but is still external to my case).

I have been very well-trained in how to do this.

Yes.

I think you may be talking about studies Jeff has shared, not me. I have not, as far as I remember, shared any studies on this forum that have any relevance to my personal case. Aside from the work on IIH, the literature simply has nothing to say about a case like mine, except re: the technical details and nature of the surgery itself.

I could not agree more. This is why I constantly talk about the need for research.

What claims have I made? That I no longer have the symptoms of ME? That they were resolved by the surgery? I do not think these claims require external research studies. I think there is ample evidence within my case. Of course, that evidence cannot be extended to anyone else. Furthermore, we unfortunately could never have designed an experiment that “proved” it was my fusion surgery that caused all my symptoms to resolve as my symptoms were always subjective to begin with and we can never observe what would have happened had I not had the surgery (I don’t even want to think about that outcome) or fully disamiguate surgery from say, opiods or anesthesia, although I find that implausible. All we can do is interpret the evidence I provide. In that sense you are right that it is not scientific to say the surgeries caused my remission because we can never know. I suppose it would be more accurate to say that “I find the evidence in my case and the interpretation of the three doctors involved that my fusion resolved my ME symptoms convincing.” But I cannot in good faith present it as a mystery. That would be disingenuous. I have a very high degree of confidence re: the effect of fusion in my case and I am someone who is never certain about anything. I know what my symptoms responded to, when and how. I suppose that is the curse of subjectivity. I know that I haven’t provided much objective proof. The step data is one piece—I very clearly no longer have PEM and the inflection point happens right after my surgery. The results of my diagnostic testing, when I have described them, will be another. My heart rate directly after surgery and in the ensuing weeks, another. That I have been able to go off all my medications is, for me, astonishing. In the coming months, I will retest all of my prior positive tests to see what has changed.

What I know nothing about, and will make no claims about, is everyone else.

Thank you. I appreciate that.

I think that’s best. I am trying to do this as quickly as possible. I have talked multiple times about the risks of surgery, have been very open about how hard surgery has been for me (and will write more about this) and wrote this disclaimer several weeks ago:

I am less concerned because again, it’s a very high bar for surgery. But you might give Jeff some feedback on that. People are constantly asking me what imaging they should have and whether they should wear a cervical collar (be careful!!!!!!) so I find linking to his site quite helpful. I do not agree with declarative statements re: that everyone who has ME symptoms should be assessed for CCI. I think people need to decide what makes sense given their case history and circumstances.

 

I am not on them.

No amount of effort could have taken me from 300 steps/day to 19,000. Trust me. I spent seven years trying

Yes

 

My bolding:

I find the looseness of the wording of this statement troubling.

Jen, you've said, "...for CCI and other conditions that can cause the symptoms of ME"?

Can you please clarify what you mean by, "cause the symptoms of ME"?

Can you be more specific about which other conditions you have in mind where you say, "...and other conditions that can cause the symptoms of ME"?

 

It seems highly unlikely that CCI can cause symptoms of ME/CFS. That of course doesn't exclude the possibility that someone has ME/CFS AND CCI or has CCI but was misdiagnosed with ME/CFS.

Anecdotal recoveries from ME/CFS following surgical correction of CCI do not tell us anything about the link between CCI and ME/CFS, nothing whatsoever. There were at least two people in Norway who swore on the proverbial stack of bibles on camera that they were hiking after rituximab yet when subjected to a double-blind RCT it turned out to be worse than ineffective. Some people have recovered by standing on a sheet of paper shouting stop. Recoveries can and do happen all the time after treatments that have no efficacy beyond non-specific treatment effects. It's great for the individuals who have recovered for whatever reason but devastating for the community at large who will derive no benefit, on average, and be subjected to financial ruin, reputational damage and possible permanent damage to health from unnecessary surgical procedures.

The term chronic fatigue syndrome has been out there in the public consciousness since the Lake Tahoe outbreak. You would think that one of the many thousands of neurologists worldwide who have had referrals of ME patients over the years would have noticed that hey, wait a minute, this clinical picture matches the CCI clinical picture.

From the doctors who have chimed in so far on the internet, it seems that the classic CCI presentation looks nothing like the classic ME/CFS presentation. Overlapping lists of vague symptoms means nothing. Almost everyone with every disease and no disease at all can endorse symptoms such as 'fatigue', 'memory issues', aches and pains, headaches etc. but we all know that when we say fatigue and memory issues we mean something very different and very severe and the fatiguability has an unusual quality.