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

JenB said:
it hadn’t occurred to me since there won’t be anything to compare it to.
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I think this would be interesting to do Ron’s test even though there’s not a direct before comparison. It would be curious if you still show a response without symptoms (IIRC so far people with mild ME still show the same effect). If people in remission also show a response it might be that effective treatment isn’t from changing that (it’s only diagnostic of tendency for ME). Of course if there’s no response it doesn’t really say anything without the comparison.

Trish said:
None of that means anyone is trying to dismiss others experiences or shut down discussion
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From skimming through this thread the tone does feel quite dismissive and sometimes slightly hostile. It would make me hesitate before sharing similar improvement experiences in future on this forum.

Hip said:
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,
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Yes 100%

In order to get to innovative answers we need to be open minded in exploring new threads of thoughts and experiences. We don’t currently know the root cause/s of ME so it might be things which surprise us. Logically these won’t be already established knowledge because we’re looking for answers which aren’t yet known!

We also need to be open minded in exploring alternative explanations - not jumping to conclusions too quickly- correlation doesn’t equal causation and all that. The balance of both would be my aim for a scientific discussion.

It is really tricky to discuss this completely openly in a scientific debate though, when it involves personal experiences. Having a dramatic remission after such an awful year must be emotionally disorienting, it’s a lot to process even if that’s a better class of problem.

It feels a little like we’re tying ourselves in knots around defining how to define things! That would possibly be better separated from a discussion of a personal experience. My current position would be that if:

A) we don’t yet know the root cause/s of ME
B) if people meet eg ICC criteria they’re diagnosed with ME
C) so if some of those people do something then go into remission, that is a pwme going into remission and worth exploring why (which might not be the obvious thing they did)
D) eventually all causes of ME could be explained this way

An alternative view is as soon as the cause is known ME was a misdiagnosis. Eventually no one has ME because we all have something else :rofl:

@JenB as you’ve said yourself it is surprising that your classic, viral onset ME could be resolved structurally. What have you thought of in terms of any alternative explanations (if this is covered elsewhere just give me a link)? I’m thinking along the lines of could it be a Cell Danger Response type of issue - a stressor triggers CDR>ME as a steady state, then a different stressor (major surgery) prompted a different response and this time healthy recovery occurred? Or could it be a result of the surgeries forcing complete physical rest beyond your perceived energy envelope? Could going to 0 steps have been more important than the surgery? Or

I have no idea.
 
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Sid said:
subjected to financial ruin, reputational damage and possible permanent damage to health from unnecessary surgical procedures.
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Let's not forget that potentially unnecessary traveling for the very severe ME patients to another country for a scan where we don't know what cut offs are being used to determine CCI can have it's devistating effects as well. That's even before the surgery.
 
Hi @JenB

Thanks for responding to questions on this forum.

I just wanted to briefly point out that the concerns I had about CCI haven’t been fully addressed.

As I understand it, you will be posting new articles on your CCI diagnosis, fusion surgery and recovery process on Medium. Some of these will involve hypotheses and speculation on “how CCI might cause post-exertional malaise (and other dysautonomias)”. Given your popularity and outreach, many patients will read these articles. Patients have used the documentary Unrest and your story to explain to their loved ones what ME/CFS is. So given that you are now in remission of ME/CFS after having CCI surgery, many will wonder if they should try to do the same. They will wonder whether CCI might be the cause of their post-exertional malaise and other ME/CFS symptoms.

I suspect that for further information patients will be forwarded to the MEpedia page on CCI or to Jeffs website, as you have done previously. Both sources give a clinical picture of CCI that is at odds with how it has been described in the scientific literature. Both give the impression that the symptoms patients have because of ME/CFS could also be caused by CCI.

Finally, patients will most likely be directed to one of the four neurosurgeons on Jeffs list to check out if they have CCI and should have fusion surgery. For patients in the US, this will mean that they will probably be directed towards the expert who does remote consultations, Dr. Bolognese, a doctor who’s been sued more than 20 times. Patients have sued him for performing unnecessary and experimental surgeries, for giving diagnoses such as tethered cord that were not supported by other experts and former staff has accused him of irresponsible and reckless behavior during surgeries.

So my concern is that desperate ME/CFS patients will be pushing for a CCI diagnosis and treatment, in the hope that this will relieve their ME/CFS symptoms as it did in your case. I’m concerned that they will not be adequately informed about the differences between ME/CFS and CCI. And I’m concerned that they will be directed to the neurosurgeon expert who seems the most aggressive in giving these diagnoses and the option to do surgery. I think this might lead to a similar situation of the Chiari patients who went to Bolognese a little more than 10 years ago, who hoped to get better but actually got a lot worse due to surgeries that were probably unnecessary.
 
matter of fact:
  • the patient was multiple diagnosed with mecfs, over years.
  • by the "most respected" doctors in the US.
  • the patient improved on mecfs-typical meds.

claim to be proven:
  • the patient recovered after CCI surgery, in particular in terms of PEM (since this is the only thing that sets mecfs apart from other conditions)

how can the recovery from PEM be proven ?
 
Michiel Tack said:
So my concern is that desperate ME/CFS patients will be pushing for a CCI diagnosis and treatment, in the hope that this will relieve their ME/CFS symptoms as it did in your case. I’m concerned that they will not be adequately informed about the differences between ME/CFS and CCI. And I’m concerned that they will be directed to the neurosurgeon expert who seems the most aggressive in giving these diagnoses and the option to do surgery. I
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have you forwarded your concerns about your kin to the relevant authorities already ?
shouldnt they be informed, that you fear the whole organization may be dangerous for patients and that certified doctors could be incompetent and greedy, and go as far as to harm patients for money ?

you and @Jonathan Edwards seem concerned about your brothers a lot.
and appeal to the patients to be considerate (or something like that) and just not tweet their experiences.

isnt this all bizarre ?

perhaps, patients should publish all the "disclaimers" doctors ask them to sign off ?
anyone has those of dr kaufman ?
 
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Grigor said:
Let's not forget that potentially unnecessary traveling for the very severe ME patients to another country for a scan where we don't know what cut offs are being used to determine CCI can have it's devistating effects as well. That's even before the surgery.
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That's right, just as many who pursued rituximab got worse from the physical effort of getting to and from the treatment.
 
Jenny TipsforME said:
From skimming through this thread the tone does feel quite dismissive and sometimes slightly hostile. It would make me hesitate before sharing similar improvement experiences in future on this forum.
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Actually the opposite is the case. Some who would like to ask questions, express concern or be critical are deciding not to post because they don't want to be accused of being dismissive, aggressive or hostile. Closing down scientific debate is not what this forum was set up for, so can we stop it with the labels please?
 
roller* said:
how can the recovery from PEM be proven ?
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2 day VO2 max? Consistently increased steps and general activity over time?
TiredSam said:
Actually the opposite is the case.
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I was stating my perception so I’m not sure how you can know the opposite is the case! I take on board that some people are feeling uncomfortable both ways though.
 
@Binkie4 refers to a video posted by whitneys mother.

transcript ron davis on dr kaufmans opinion :
“I don’t think it’s the cause of the disease, but I think it adds to a lot of the symptoms”.

... a number of people who he’s [kaufman] pretty convinced do not have that, although they could develop it because of flexibility problems.
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seems, ron davis thinks:
... about half of the patients have Ehlers Danlos syndrome.
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Jenny TipsforME said:
From skimming through this thread the tone does feel quite dismissive and sometimes slightly hostile. It would make me hesitate before sharing similar improvement experiences in future on this forum.

.
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Hi, I see no even slight hostility, Jenny. People are engaging, rightfully, in robust debate. If you have only skimmed the thread you may not have a sense of the wider tone.

Crucially, Jennifer is not just a patient sharing an almost overnight surgical recovery from ME on a forum. She has a global platform, she sits on NIH working group panel, and she herself is posting her recovery story widely across diff social media platforms.

Her story is highly unusual and will be read by many, patients and doctors. Debate is permitted, even if some questions are tough. Jennifer strikes me as being more than able to respond to sometimes challenging and important Qs, as she has shown in her detailed responses on here.
 
JenB said:
Hi! Thanks for the friendliness :) Here is my long answer to that question: https://link.medium.com/ul5iukw35W

The short answer is no. I met the clinical criteria in spades and for now, ME is a clinical diagnosis. I also responded to commonly prescribed treatments and had numerous lab findings consistent with this diagnosis. To say that you have ME if you don’t know what is causing your symptoms but not if you have additional testing almost no one has had and uncover a mechanism underlying those symptoms is to render ME a diagnosis of exclusion. It would take more research and an updating of the criteria for me to rethink my understanding of this. We would also need to explain all of my “looks like ME but hardly definitive” (because that does not exist) lab findings and onset history.

I find the “you got better, therefore didn’t have ME” or the “you found your mechanism (not to be clear, cause), therefore you never had ME” reasoning to be circular.

Better to ask if/how/why cranial settling can cause PEM and all of the other symptoms I no longer have.
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Thank you for taking the time to reply. I too like everyone on here am very happy you are in remission.
I am surprised until there is better objective testing for ME you would not even consider at least the possibility of misdiagnosis. I realise you nor I can’t definitively say yes it was or wasn’t a misdiagnosis, but it seems at the very least a possibility.
 
I feel like @Jenny TipsforME and some others here about the tone of the discussions. But thanks, @TiredSam, for pointing out that obviously different sides are "unhappy" -this brings understanding with it. So I concur:
Jenny TipsforME said:
I take on board that some people are feeling uncomfortable both ways though.
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TiredSam said:
Because they have told the moderators.
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I wouldn't dare...
I've had experiences, too, but indpendently from that, I have read the thread, I observed certain things and I perceive it as "difficult", too. So, as @Jenny TipsforME put it much better than I, people seem to feel both ways uncomfortable. I am reminded of @rvallee's post calling for "peace". And honestly, I think it has become a bit better.
 
It seems like the overwhelming majority of posts that show up in my feed are critical of how @JenB has handled this, feels like dog piling. I will try to balance this out to say I think she has dealt with this very well. She has only recommended that people get MRIs if they fit CCI/etc symptoms. She has not said "if you have ME you need this surgery" or anything close.

What was she supposed to do? Say I had surgery and coincidentally improved straight after. @TiredSam perhaps people are hesitant to post criticisms because of being accused of attacking, but it is also true that people are hesitant to post in her defense lest they have to deal with a swarm of people trying to pull your comment apart. Neither one is good for scientific debate. It would be better if people where more polite.
 
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