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

[Saz94]

EDIT: also you have increased risk of gastroparesis due to all types of EDS, including HEDS

Yes my friend has severe gastroparesis caused by HEDS

 

[Guest 2176]

It would be interesting to conduct a simple study examining whether ME/CFS patients when placed under neck traction experience instant remission from POTS. This I believe occurred with Jen and Jeff.

Traction is an easy thing to do: you can even buy over-door neck traction devices on Amazon for around £15.

. I don’t think these over the door traction devices are high quality and I certainly don’t think it would be high enough to use for a clinical trial. Invasive cervical traction seems like a better idea for this purpose.

 

[Hip]

I don’t think these over the door traction devices are high quality and I certainly don’t think it would be high enough to use for a clinical trial. Invasive cervical traction seems like a better idea for this purpose.

Well here is a professional physical therapy and chiropractic table which can apply cervical traction, and it uses pretty much the same system as the over-the-door traction devices. Although there are also tables like this one which have a slightly more sophisticated-looking traction device.

 

[Mattie]

Saying "a very small minority" may be mischaracterizing the stats. So far out of 20 ME/CFS patients tested by MRI with flexion, extension and rotational views, over 90% were found to have CCI/AAI.

Now, at this stage it's not clear if those 20 individuals constitute a random sample of ME/CFS patients, or whether they self-selected perhaps because they felt they might have some neck issues. But if it can be considered a more-or-less random sample, then this 90% not a small minority, but the vast majority.

Current stats show 18 out of 27.

 

[Mattie]

Three ME/CFS patients, Jeff, Jennifer, and Matt, have reported spectacular improvements of their ME/CFS symptoms following surgical interventions for craniocervical instability (CCI) and atlantoaxial instability (AAI).

Totally agree with you calling the improvements of Jeff and Jennifer spectacular.
I myself have reported symptoms improving and going from severe to moderate ME.
Yes I am happy with these results, but it is too early to call this outcome spectacular. I still have moderate ME and that is no walk in the park.
I will keep updating my status on the other forum because I don't like the hostile environment on this forum nor the recent attacks on Jennifer and what she can or cannot do and should or should not publish.
Everyone must decide for himself what to do with the recent information. It is clear to all of us that a lot remains to be sorted out and that much research is needed. In the meantime, patients like Jennifer, Jeff and myself will continue to tell about our experiences in all honesty. Just trying to raise awareness. Not pushing anyone to go the surgical route. No disclaimers needed.

 

[Guest 2176]

Well here is a professional physical therapy and chiropractic table which can apply cervical traction, and it uses pretty much the same system as the over-the-door traction devices. Although there are also tables like this one which have a slightly more sophisticated-looking traction device.

I will take a look but in my opinion if a trial is going to be done, it makes sense to do it as precisely as possible. Jeff stayed that his pots didn’t resolve until a lot of force from the halo, far more than a standard cervical traction device can give. My pt mentioned a lying down pump up traction device that can go up to fifty pounds of force, but the way it grips makes it inferior to invasive traction or even manual traction.

 

[Jonathan Edwards]

I would certainly advise against any do-it-yourself traction option.

One of the problems with surgery in the past was that the fixation left the upper vertebrae in a worse rather than a better position - which may be why people deteriorated or died. If there is genuine instability there is no guarantee that immobilisation will not make things much worse.

 

[Trish]

Totally agree with you calling the improvements of Jeff and Jennifer spectacular.
I myself have reported symptoms improving and going from severe to moderate ME.
Yes I am happy with these results, but it is too early to call this outcome spectacular. I still have moderate ME and that is no walk in the park.
I will keep updating my status on the other forum because I don't like the hostile environment on this forum nor the recent attacks on Jennifer and what she can or cannot do and should or should not publish.
Everyone must decide for himself what to do with the recent information. It is clear to all of us that a lot remains to be sorted out and that much research is needed. In the meantime, patients like Jennifer, Jeff and myself will continue to tell about our experiences in all honesty. Just trying to raise awareness. Not pushing anyone to go the surgical route. No disclaimers needed.

Hi Mattie, thank you for clarifying you current health situation. I hope your health continues to improve. I also reiterate that I am delighted for others whose health has improved.

I am sorry you see the approach to individuals telling their story here as hostile. Of course anyone is free to share their experiences with the public, including whatever treatments they have had, and whatever changes in their ME symptoms they experience after those treatments.

When any of us do this, whether the treatment is surgery, LP, a drug, faecal transplants, or some other approach, it is surely responsible to accompany our stories with clear reminders to our readers of the research evidence or lack of it for that particular treatment in the context of ME/CFS, and warnings about known possible side effects. The problem with not putting such disclaimers on every article is that individuals coming across such stories can get a false impression of the relevance and advisablilty of pursuing such a treatment course themselves.

This is a science forum, so it is understandable surely that any hypotheses made by any of us about why we have experienced particular changes in our symptoms will be examined scientifically, and anything that does not make physiological sense, and any claims we make of cause and effect that may not be justified by a single case, are examined and discussed. A good scientist will always examine carefully the plausibility of a hypothesis put forward by someone else, especially when that hypothesis is based on a few cases outside the context of properly conducted clinical trials.

I applaud the fact that Jen has been careful in some of her articles to emphasise that she is simply telling her own experiences and they should not be taken as evidence applicable to others, and that Jen and Jeff (and I assume you) are keen for the subject to be properly researched. But until that has been done, it is simply responsible behaviour to put disclaimers on articles that describe personal medical journeys and make hypotheses about their relevance to ME/CFS.

 

[Alvin]

This is a science forum, so it is understandable surely that any hypotheses made by any of us about why we have experienced particular changes in our symptoms will be examined scientifically, and anything that does not make physiological sense, and any claims we make of cause and effect that may not be justified by a single case, are examined and discussed.

However we should be careful not to throw away the baby with the bathwater.
If someone claims LP cured them we know its nonsense because what we have is not psychosomatic. We have mensurable abnormalities and loads of biomedical research which in aggregate shows we have biochemical abnormalities of unknown etiology.
Similar if someone claims homeopathy cured them we know its nonsense because there is no bioactive ingredient involved. By their logic a glass of water should cure every disease known since it has touched every other molecule of water sometimes in earth's history.
When someone says they have a measured abnormality and they found a treatment that brought them huge improvement they are not the same as LP or homeopathy. No one is saying everyone should get surgery but if we are only interested in whats already proven then nothing new can be proven. We should of course be prudent and its of course necessary to put together evidence and look at the issue at hand but dismissing something out of hand or saying information should be removed because its irresponsible to even have public theories (see MEPedia thread) also has the unintended side effect of allowing fraudsters to dominate the conversation, we then have nothing and they have something. If instead the conversation is we have lots of ideas and here is what we know and what we don't know or why could it be this or that or what makes no sense and needs pure research then we are having a better situation then PACE is the only game in town.

Lets not forget if no one took anecdotal evidence seriously there would have been no Rituximab trial at all and it could still be a rumour flying around. Another example is anecdotal evidence found that Amantadine helps Parkinsons patients, it was tested and found to not be an artifact. There is a huge difference between unproven yet worth looking into and deny/delete evidence and be closed minded.

 

[ME/CFS Skeptic]

Totally agree with you calling the improvements of Jeff and Jennifer spectacular.
I myself have reported symptoms improving and going from severe to moderate ME.
Yes I am happy with these results, but it is too early to call this outcome spectacular. I still have moderate ME and that is no walk in the park.

Thanks for pointing this out Mattie, will change this in the text.

Everyone must decide for himself what to do with the recent information.

I agree but that was sort of the point of my blog post: that readers didn't get all the information to make their own informed decision. Nowhere was there a description of what a typical case of CCI looks like and how that clinical picture differs from the typical ME/CFS patient. On Jeffs website, there was no information about the risks and complications of these surgeries nor was there in the Medium article that described Jenn's remission.

All I suggested was to add a disclaimer about the current scientific understanding of CCI so these recovery stories could be told in a more cautionary manner. I still don't know what is so problematic about that. What exactly is the downside of adding a short disclaimer on what the current scientific literature says?

 

[sb4]

I have no problem with people saying that CCI surgery / traction can be dangerous, it may only affect a small portion of people, there recovery might have some unrelated cause, etc. In fact I encourage it, that should be what a forum is for.

I also agree with @Mattie that I think @JenB and @Jeff_w have been treated unnecessarily hostile. I am not talking about people just disagreeing with them. I think they have been quite responsible in the way they have presented this information and understand why Mattie is hesitant to post here.

 

[ME/CFS Skeptic]

However we should be careful not to throw away the baby with the bathwater.

if we are only interested in whats already proven then nothing new can be proven.

Lets not forget if no one took anecdotal evidence seriously there would have been no Rituximab trial at all and it could still be a rumour flying around.

With all the respect Alvin, but whose statements are you criticizing here?

I don't think there is anyone on this forum who does not take Jeffs and Jennifer's remission seriously, in fact, that's the reasons why we have these long threads - to discuss it in depth. I don't think there's anyone who has said that there should not be research into this - in fact, the most skeptical forum members have immediately asked for this (a blinded review of imaging) in the hope that it will bring more information and clarity. I myself explicitly wrote: "I've argued that there currently is no scientific evidence to suggest or think that CCI/AAI surgery relieves ME/CFS symptoms. That doesn't mean that it doesn't. Scientific understanding always has to start somewhere. I hope the stories of Jeff, Jennifer or Matt will indeed lead to a greater understanding of ME/CFS and related conditions."

 

[Alvin]

With all the respect Alvin, but whose statements are you criticizing here?

Whats going on on the CCI threads.
But if you want a specific here is one example of my reply
https://www.s4me.info/threads/biome...purposes-and-pitfalls.5330/page-5#post-171356

I don't think there is anyone on this forum who does not take Jeffs and Jennifer's remission seriously, in fact, that's the reasons why we have these long threads - to discuss it in depth. I don't think there's anyone who has said that there should not be research into this - in fact, the most skeptical forum members have immediately asked for this (a blinded review of imaging) in the hope that it will bring more information and clarity. I myself explicitly wrote: "I've argued that there currently is no scientific evidence to suggest or think that CCI/AAI surgery relieves ME/CFS symptoms. That doesn't mean that it doesn't. Scientific understanding always has to start somewhere. I hope the stories of Jeff, Jennifer or Matt will indeed lead to a greater understanding of ME/CFS and related conditions."

The hostility towards this concept is obviously apparent to those who want to see

 

[Trish]

However we should be careful not to throw away the baby with the bathwater.

Lets not forget if no one took anecdotal evidence seriously there would have been no Rituximab trial at all and it could still be a rumour flying around.

I would say that makes my point for me. Yes, anecdotal evidence led to the rituximab trial, but at the same time irresponsible doctors offered expensive rituximab treatment and patients listened to the anecdotes and wasted a lot of money and potentially put their health at risk by obtaining treatment outside the trial context, before those trials were completed and proved negative.

Edit to add: I am not saying we should not share our stories, just that it should be done responsibly.

 

[ME/CFS Skeptic]

But if you want a specific here is one example of my reply

This comment you are referring to was about the MEpedia article on CCI and does not suggest that people aren't taking this seriously. If I understand correctly, MEpedia is meant to be an encyclopedia and these normally reflect scientific understanding, not anecdotes and speculation.

The hostility towards this concept is obviously apparent to those who want to see

I'm more concerned with skeptics being labeled as hostile.

 

[Alvin]

I would say that makes my point for me. Yes, anecdotal evidence led to the rituximab trial, but at the same time irresponsible doctors offered expensive rituximab treatment and patients listened to the anecdotes and wasted a lot of money and potentially put their health at risk by obtaining treatment outside the trial context, before those trials were completed and proved negative.

Edit to add: I am not saying we should not share our stories, just that it should be done responsibly.

Taking down pages is not sharing responsibly
Claiming there is no evidence (not something you said) is not being responsible
I wish people would not jump at unproven ideas. But as i said if we act high and mighty we allow those who are not as "ethical" as us to dominate public discourse. Thats a worse outcome.

This comment you are referring to was about the MEpedia article on CCI and does not suggest that people aren't taking this seriously. If I understand correctly, MEpedia is meant to be an encyclopedia and these normally reflect scientific understanding, not anecdotes and speculation.

Wikipedia has many theories interspersed in its pages.
Properly referenced and not claimed a cure its perfectly acceptable

I'm more concerned with skeptics being labeled as hostile.

The opposite is the tone of these threads

 

[Stewart]

I would say that makes my point for me. Yes, anecdotal evidence led to the rituximab trial, but at the same time irresponsible doctors offered expensive rituximab treatment and patients listened to the anecdotes and wasted a lot of money and potentially put their health at risk by obtaining treatment outside the trial context, before those trials were completed and proved negative.

Edit to add: I am not saying we should not share our stories, just that it should be done responsibly.

A large part of the disagreement here seems to be over what it means to share your story responsibly. Michel has explained why he feels Jen should add a disclaimer to each of her posts on this subject, explaining the current scientific understanding of CCI. Personally I disagree - Jen's story (and those of Jeff and Mattie) seem to fly in the face of our current understanding, so I don't think such a disclaimer would be particularly enlightening or helpful.

I also don't think it's their responsibility to give readers "all the information to make their own informed decision" as Michiel suggested. As far as I'm concerned their responsibility is only to tell their story as fully as possible, including all the details they consider important. It's down to each reader to decide what additional information they need to seek out after reading these accounts - Jen and Jeff can't make that decision for them.

I understand the desire to try and protect a vulnerable patient group from treatments that may be harmful, or ineffective - or just prohibitively expensive - but the reality is if Jen, Jeff and Mattie are to share their stories (and I think they should) then it's sadly inevitable that some patients will desperately grab at the hope that's been offered rather than proceeding cautiously. Personally I don't think you minimise that with disclaimers and summaries of the current scientific research. I think you're more likely to minimise it by detailing your illness progression, the symptoms that manifested and the steps you took to get a diagnosis - in effect providing a checklist and a route map for others to follow if so inclined - which is what Jen and Jeff have done.

So in my opinion they already are sharing their stories responsibly but obviously some of you feel differently. Ultimately the decision about what it means for Jen (or Jeff - or Mattie) to tell her story responsibly is Jen's alone. And just because she's made a different judgement to the one you would make in her shoes, it doesn't follow that she's behaving irresponsibly.

I will keep updating my status on the other forum because I don't like the hostile environment on this forum nor the recent attacks on Jennifer and what she can or cannot do and should or should not publish.

I'm sorry you feel this is a hostile environment Mattie. I can understand it - if I was in your shoes I'd probably feel the same way - but I don't think it's an entirely fair characterisation. Everybody on this board is primarily concerned with the wellbeing of ME patients. It's understandable that you, Jeff and Jen want to share your experiences of a surgical intervention that has led to significant improvements in your health - but it's also understandable that other people should be sceptical - and even critically interrogate your accounts - given the current lack of any scientific research that backs up your stories.

In my opinion the debates, discussions and disagreements that arise are extremely valuable - I'm in the process of getting diagnosed (and considering surgery) for structural problems in my neck, and I've found the back and forth between 'believers' and 'sceptics' (if you'll excuse the tongue-in-cheek terminology) in recent days to be very informative. But I appreciate that it's not pleasant to feel you're on the recieving end and that your personal experiences are being discredited simply because you can't produce a peer-reviewed paper from a respected journal to back up your claims. However I hope you'll continue to participate in the discussions, both on this forum and elsewhere. As one of the few ME patients who's had this surgery to date, your experience is extremely important. But I think you may have to accept that until we have a clearer picture of what's going on in ME cases like yours, you're going to run up against a fair amount of scepticism.

 

[ME/CFS Skeptic]

Michel has explained why he feels Jen should add a disclaimer to each of her posts on this subject, explaining the current scientific understanding of CCI. Personally I disagree - Jen's story (and those of Jeff and Mattie) seem to fly in the face of our current understanding, so I don't think such a disclaimer would be particularly enlightening or helpful.

I would argue that if a story flies in the face of our current understanding, that is precisely a reason to provide some scientific background to the story. If ME/CFS patients want to write blogs about their remission following rituximab (which could be interesting) then it would be advised to inform readers about the negative phase III trial by Fluge & Mella. That seems obvious to me. I think it might be useful to apply everything that you've said, Stewart, to all the other recovery stories on ME/CFS that are out there.

that your personal experiences are being discredited

But his personal experiences are not being discredited in this thread.

 

[Trish]

Moderator note.

Please everyone refrain from further accusations of hostility or aggression by persons named or unnamed on either side of the argument.
A reminder of relevant rule:

Rule 1: No personal attacks or public accusations
While vigorous discourse and even disagreement is to be expected on a forum, it is not appropriate to insult other forum members or attack them on the basis of their characteristics or motivations. Public accusations against other forum members are also not permitted, as they distract from the discussion and can escalate a situation. Disagreement should focus upon the arguments made, not upon the person making those arguments.

If you think any post breaches this rule, please report it to moderators.

[Edited]

 

[Stewart]

I would argue that if a story flies in the face of our current understanding, that is precisely a reason to provide some scientific background to the story. If ME/CFS patients want to write blogs about their remission following rituximab (which could be interesting) then it would be advised to inform readers about the negative phase III trial by Fluge & Mella. That seems obvious to me. I think it might be useful to apply everything that you've said, Stewart, to all the other recovery stories on ME/CFS that are out there.

I do understand that perspective, but as I've said I don't agree with it. I would argue that if an evidenced account flies in the face of our current understanding then our current understanding is obviously incomplete, inadequate or just downright wrong. I don't think it's particularly helpful or informative to provide the scientific background if the personal account you're about to give is only going to undermine it and demonstrate the current understanding to be unsatisfactory or incorrect.

If there were negative trials looking at the effectiveness of CCI surgery in treating ME, then yes the responsible thing to do would be for Jen to mention them. But there aren't any such trials so I don't think your rituximab comparison holds up. Absence of evidence, as the expression goes, is not evidence of absence. There's no scientific evidence to draw upon at all that looks specifically at a connection between ME symptoms and CCI, and the whole area of CCI/AAI/Chiari/Cervical Medullary Syndrome diagnoses seems very opaque at present. Given that's the case - and this is just my opinion - I don't think a disclaimer of the type you've suggested would be particularly enlightening or helpful. I think it would muddy the waters rather than add clarity or context.

But his personal experiences are not being discredited in this thread.

I'm certain that no-one is intending to discredit Mattie's - or Jen's or Jeff's - personal experiences, but I get the impression it may not feel that way to some people - Mattie, Jen and Jeff in particular. As I said in my last post, until a clearer picture develops of what exactly is happening in ME cases like theirs, there will be understandable (and legitimate) scepticism about some of the claims they're making. That's not an easy position for them to be in.