Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

[StarChild56]

In my own case, my supine MRIs didn't show CCI. My upright flexion/extension MRI showed CCI only in flexion -- not in neutral or extension.

I may be wrong but I feel like in my video conference with Dr. B, he may have said that my measurements were not meeting the first threshold for surgery. He then talked to me about invasive traction, but also a lot of other things and I had a very poor connection, was trying to take notes while on the cell phone video call and I could be mistaken. But I wondered about this later when I hear of people who were not admitted because of their measurements.

I do not know what my measurements are/were.

He did say that patients with my profile, who have a good result during ICT have an excellent response to surgery (so I don't know all the factors). He also said that no matter how bad someone's measurements were (bad, meaning needing surgery) - that if the ICT was not successful, then they will not go on to have surgery. So I gather from his perspective - and what he told me - that is the second and most important threshold.

Argh. Hope that made sense.

 

[bread.]

that seems to somewhat confirm my conspicion/theory that only people with vertical instability will profit from surgery - the numbers of Dr. H’s study, Dr.G’s outcomes he showed in a pp presentation and Dr. B’s behaviour/decision pattern show that. It therefor makes sense of Dr. B to only do surgery after a traction test in my view.

This seems to be VERY significant to me. For me peesonally, I ended up being sicker with a horizontal instability because someone pulled on my head (my responsibility) to test the hypothesis.

 

[JenB]

that seems to somewhat confirm my conspicion/theory that only people with vertical instability will profit from surgery - the numbers of Dr. H’s study, Dr.G’s outcomes he showed in a pp presentation and Dr. B’s behaviour/decision pattern show that. It therefor makes sense of Dr. B to only do surgery after a traction test in my view.

This seems to be VERY significant to me. For me peesonally, I ended up being sicker with a horizontal instability because someone pulled on my head (my responsibility) to test the hypothesis.

People who respond to traction will likely benefit from surgery. It doesn’t mean they only have vertical instability.

I had AAI and it greatly benefited that problem, too. And had I only had AAI, a fusion still would have been beneficial.

Interesting re: horizontal instability. By which measure?

 

[bread.]

People who respond to traction will likely benefit from surgery. It doesn’t mean they only have vertical instability.

I had AAI and it greatly benefited that problem, too. And had I only had AAI, a fusion still would have been beneficial.

Interesting re: horizontal instability. By which measure?

measurements are not what drive future improvements post surgery, all the specialists are very clear about this - look at all the available data from Henderson and Gilette in EDS population, they speak the same language - of course you did not only have vertical instability, if you look at the ligament and spine structure it will always be a mix of both to some degree.

I am sorry, but it is impossible to know what would have benefited you if „xyz“, that is simply not how it works, even though it is your body.

We have yet to encounter other miraculous remissions like yours and Jeffs, and I sure hope we will, but when we do, I personally think we will see that in people with cranial settling and not with horizontal instability (we are speaking of degrees here) your surgeon seems to share „my“ opinion. I am not saying that people that those patients should not have surgery, I am saying they will less likely profit from it the way you did, the improvements will be to a different degree on average, again, that is what ALL the current available data is saying, it is not just me.

re which measurement:

the measurement is a tool, it is not what „makes or breaks“ it, when I pull on your head and you feel „healthy“ that is what does. There is no easy testable equivalent for horizontal instability to what pulling is for vertical instability. If there would be something like that, patients would just wear a brace for the rest of their lives.

 

[JenB]

My question was by which measure(ment)s do you have horizontal instability that worsened with vertical traction. CXA? Grabb? BAI?

measurements are not what drive future improvements post surgery

I know

I am sorry, but it is impossible to know what would have benefited you if „xyz“, that is simply not how it works, even though it is your body.

This is me paraphrasing the surgeons. Traction is the strongest sign a patient will benefit from surgery and which symptoms will likely improve, not measurements. That is all I was saying and I am pretty sure this comports with what you were pointing out, too.

I said likely, which is not the same thing as certain.

We have yet to encounter other miraculous remissions like yours and Jeffs, and I sure hope we will, but when we do, I personally think we will see that in people with cranial settling and not with horizontal instability, your surgeon seems to share „my“ opinion. I am not saying that people that those patients should not have surgery, I am saying they will less likely profit from it the way you did, the improvements will be to a different degree on average, again, that is what ALL the current available data is saying, it is not just me.

Benefit does not mean miraculous improvement. It just means that the surgery improves people’s symptoms, as designed. The ME piece of this is orthogonal as we were not an explicit patient population for this surgery until very recently.

There are now three additional patients who have had remission and two others who have made significant improvements.

Anyway, I think we are paraphrasing the same surgeons, so I am not sure what we are disagreeing about.

The fusion prevents motion across all planes of movement, so I cannot see why it would not benefit instability in any direction.

In your initial post you said “only people with vertical instability” will benefit. This is what I was responding to. In your subsequent post you said “the improvements will be to a different degree on average.” The latter I can understand.

 

[JenB]

Ah I see. What you were saying before is you think only people who have vertical instability will have micraculous improvements from fusion surgery. Those with other forms of instability will have less dramatic results. Am I understanding you correctly?

 

[Hip]

that seems to somewhat confirm my conspicion/theory that only people with vertical instability will profit from surgery - the numbers of Dr. H’s study, Dr.G’s outcomes he showed in a pp presentation and Dr. B’s behaviour/decision pattern show that. It therefor makes sense of Dr. B to only do surgery after a traction test in my view.

I had that thought myself, that maybe those with vertical instability (cranial settling) might profit more from surgery than those with horizontal instability. With vertical instability, you have the dens directly impinging on and pressurizing the brainstem, and when you raise the skull via surgery, you release that pressure, thus restoring normal functioning to the brainstem.

With horizontal instability I am guessing (but don't really know for sure) that there's no pressure or contortion on the brainstem when the head is in the neutral position, only when it is in flexion and extension. Here I am referring to the horizontal instability as indicated by the translational BAI. Since most of us will have our head approximately in the neutral position for most of the day and night, perhaps this horizontal form of instability causes less problems for the brain, and as a result, perhaps surgery can't make that big a difference.

Those were my thoughts. However, at this stage we don't have enough ME/CFS patients undergoing surgery to see any trends yet. Though possibly Dr G has his own data on the surgical outcome of non-ME/CFS patients with horizontal instability CCI undergoing.

 

[bread.]

Ah I see. What you were saying before is you think only people who have vertical instability will have micraculous improvements from fusion surgery. Those with other forms of instability will have less dramatic results. Am I understanding you correctly?

Yes.



The degree of vertical instability has to be „greater“ than the horizontal instability in order to get a remission like yours, that is my theory.

I am saying this for quite a while now, Starchilds comments about Dr.B not doing surgery without successful TCI seem to converge with it.

I believe that a vertical instability automatically carries a horizontal instability, with my crude understanding of the spine I do not see a way out of this conclusion.

In horizontal instability I can see how there is only horizontal instability and no vertical instability at the same time.

I obviously do not know this.

Fusion will stop all instabilities but that does not mean that your symptoms will improve if you are not having a cranial settling, that is my whole point, it will only hinder future damage from horizontal instability but not automatically improve your base line. People with myelopathies due to stenosis, which to me seems like a brother to horizontal instability has somewhat of the same outcome, surgery halts progression more than everything else.

Can we know a little bit more about these new patients you think?

Thank you for keeping us in the loop, if I were you I would be sipping Pina Coladas on the Maledives.

 

[HansG]

@bread. Thats a very interesting approach, wich I thought about by myself as well. All of what you say makes sense to me. Even considering myself as a completeley layperson, some of the mechanisms seem quite reasonable.

What helps me to think about CCI, is imagine the skull is just not on the right position. And, I think any respond in symptoms to manual traction confirms this, not just relief. (except if its done pretty brutal, for sure) It just says your symptoms are related to the position of your head, deforming/ compressing brainstem, spinal cord or something.

I think that doesnt necessary mean, theres no solution for this. If it is vertically the solution just seems most obvious or even "simple" (despite being such a complex surgery, e.g. compared to stenosis surgery). Just lift the head up somewhere above a specific point, fix it in place and its done. If its horizontally it seems to be much more difficult to find the right position. Secondary, the dynamic component seems more relevant in this case. But that doesnt mean, theres no solution for vertically instability. For instance, I could imagine, that horizontal instability responds much better to conservative treatments, like muscle strengthening.

Buit, I'm wondering, if any of the specific neurosurgeons made a clear difference between vertical and horizonatal instability and the link to possible surgery outcomes? Such an obvious finding should be mentionend somewhere, dont you think?

Anyway, what we learned from @jeff_w, @JenB and @mattie is not just, that CCI as a strucural reason could lead to ME/CFS smyptoms. Its about even "mild" deforming/ compressing of brainstem, spinal cord ect. can cause theese symptoms, even if most surgeons and radiologists are trained to read this as "normal". So we have to consider any structural reason might causing this.

If its not the position of the head, there are lot of reasons, like cervical spine deformation. For instance, if I understand Dr. B. (in his videos) the right way, just by swelling the odontoid process can dip to much in the spinal canal. A possible surgical solution would be to cut the dens a bit. Maybe I didn't got it properly, because of translation problems. @Hip As you have gathered so much information about this, maybe you know what I mean with this example?

The conclusion is, that our brainstem/ spinal cord could be the reason for our symptoms (at least in a subset of ME/CFS sufferers) is such a great finding. It is adressable and should be provable in future. I'm very thankful to all the people, who started this research and contributed to! Its nothing less than a milestone.

 

[bread.]

@bread. Thats a very interesting approach, wich I thought about by myself as well. All of what you say makes sense to me. Even considering myself as a completeley layperson, some of the mechanisms seem quite reasonable.

What helps me to think about CCI, is imagine the skull is just not on the right position. And, I think any respond in symptoms to manual traction confirms this, not just relief. (except if its done pretty brutal, for sure) It just says your symptoms are related to the position of your head, deforming/ compressing brainstem, spinal cord or something.

I think that doesnt necessary mean, theres no solution for this. If it is vertically the solution just seems most obvious or even "simple" (despite being such a complex surgery, e.g. compared to stenosis surgery). Just lift the head up somewhere above a specific point, fix it in place and its done. If its horizontally it seems to be much more difficult to find the right position. Secondary, the dynamic component seems more relevant in this case. But that doesnt mean, theres no solution for vertically instability. For instance, I could imagine, that horizontal instability responds much better to conservative treatments, like muscle strengthening.

Buit, I'm wondering, if any of the specific neurosurgeons made a clear difference between vertical and horizonatal instability and the link to possible surgery outcomes? Such an obvious finding should be mentionend somewhere, dont you think?

Anyway, what we learned from @jeff_w, @JenB and @mattie is not just, that CCI as a strucural reason could lead to ME/CFS smyptoms. Its about even "mild" deforming/ compressing of brainstem, spinal cord ect. can cause theese symptoms, even if most surgeons and radiologists are trained to read this as "normal". So we have to consider any structural reason might causing this.

If its not the position of the head, there are lot of reasons, like cervical spine deformation. For instance, if I understand Dr. B. (in his videos) the right way, just by swelling the odontoid process can dip to much in the spinal canal. A possible surgical solution would be to cut the dens a bit. Maybe I didn't got it properly, because of translation problems. @Hip As you have gathered so much information about this, maybe you know what I mean with this example?

The conclusion is, that our brainstem/ spinal cord could be the reason for our symptoms (at least in a subset of ME/CFS sufferers) is such a great finding. It is adressable and should be provable in future. I'm very thankful to all the people, who started this research and contributed to! Its nothing less than a milestone.

I can only give that back, everything you say makes sense to me, your name to me suggests that this could be a cultural phenomenon though, are you German or Austrian by any chance?



I do not think that somebody looked at it like this or openly says it, either that is because I am simply wrong, because it is so simple that no one with that hyper specialization as a surgeon would think about it (doubt it) or because surgeons do not want to categorically dismiss patients unless they are certain (in that scenario Dr.B seems to be certain).

 

[HansG]

@bread. Yep, I‘m German. You, too?

Regarding the few neurosurgeons willing and capable to look into this at the moment, I think we‘re trying to make sense to wheres no sense, just people. I agree, that maybe Dr. B. wants to make sure to just offer surgery, when hes 100% convinced he can help, whereas Dr. G is maybe willing to do surgery against his own recommendation, just because theres at least a chance to improve a life of no hope. I dont know.

Btw: I read Dr. Bs rejections more like „I can not help you.“ than „CCI is not your Issue.“

But i’m convinced, once the finding that minor compression of brainstem/ spinal cord can cause major symptoms is wider accepted, our range of solutions will expand immediatelly, including surgical treatment. Lets hope it doesnt take too long.

 

[bread.]

Austrian.

 

[jeff_w]

Hi @bread.

You wrote:

We have yet to encounter other miraculous remissions like yours and Jeffs, and I sure hope we will,...

There are 5 complete ME/CFS remissions, following a fusion surgery for CCI +, that I'm aware of.

Consider this: How many people do we know -- with an ME diagnosis -- who have had a fusion surgery?

I know of 7: Karen, Jen, Starchild, Mattie, Julia, myself, and one unnamed. Out of these seven, five have had a complete resolution of ME symptoms.

Out of the remaining two, Starchild is too soon to tell (due to swelling), and Mattie has significantly improved (though he still has a remaining structural issue). Even with remaining issues, Starchild and Mattie have both made significant gains in functioning after their fusions.

The degree of vertical instability has to be „greater“ than the horizontal instability in order to get a remission like yours, that is my theory.

I'm happy to report that this is not the case.

In my own case: I had "the trifecta" of confirmed horizontal, rotational, and vertical instability. My upright MRI measurements showed severe horizontal instability, bad enough to be considered "surgical." Because of my obvious horizontal instability on imaging, Dr. B saw no need for in person invasive cervical traction.

that seems to somewhat confirm my conspicion/theory that only people with vertical instability will profit from surgery..

I had severe rotational instability, in addition to the horizontal and vertical instability mentioned above. As you're aware, I've made a complete recovery -- despite having severe instability in all three directions. So it seems impossible that people with only vertical instability will improve after a fusion.

Also consider that people with each type of those 3 instabilities will benefit from invasive cervical traction, which mimics a fusion.

This seems to be VERY significant to me. For me personally, I ended up being sicker with a horizontal instability because someone pulled on my head (my responsibility) to test the hypothesis.

Looking back through this thread, it seems you had a friend pull on your head. You wrote:

then 5 months ago after having neck issues on and off I red Jen and Jeffs story which led me to believe that it was a clever idea to try manual traction (I am bedbound, I have asked a friend to pull my head straight up, stupid as I am). Well, it was a very bad idea as you can imagine. I suffer from severe neck issues ever since.

Wow, really sorry to hear it.

It's important to have traction performed by someone who knows what they're doing, such as a manual physical therapist. Reason being, they will know:

1. How to keep your skull in neutral.
2. How much force to apply as they pull on it.

Traction will benefit any type of craniocervical instability: Vertical, horizontal, or rotational. It is effective because it shifts the skull into the correct *neutral* alignment. This neutral position takes care of horizontal and rotational instability. A physical therapist will also relieve cranial settling by knowing how much force to apply, and which direction to apply it. This correct force/direction will take care of vertical instability.

but when we do, I personally think we will see that in people with cranial settling and not with horizontal instability (we are speaking of degrees here) your surgeon seems to share „my“ opinion.

I am not saying that people that those patients should not have surgery, I am saying they will less likely profit from it the way you did, the improvements will be to a different degree on average, again, that is what ALL the current available data is saying, it is not just me.

I see no data to indicate this, and I also don’t think Dr. Bolognese has said anything like this. But if you have some information indicating otherwise, I'd love to see it in order to make sense of it.

 

[JenB]

Yeah, I think Jeff’s point re: neutral position extends to the fusion hardware. Before placement, they will both lift your head and place it in neutral position. The hardware is fixating the bones across every plane of movement.

I’ve watched all of Henderson and Bolognese’s talks and don’t recall them saying people w/ horizontal instability would improve less but I could have just not remembered that as an important detail.

 

[bread.]

Hi @bread.

You wrote:


There are 5 complete ME/CFS remissions, following a fusion surgery for CCI +, that I'm aware of.

Consider this: How many people do we know -- with an ME diagnosis -- who have had a fusion surgery?

I know of 7: Karen, Jen, Starchild, Mattie, Julia, myself, and one unnamed. Out of these seven, five have had a complete resolution of ME symptoms.

Out of the remaining two, Starchild is too soon to tell (due to swelling), and Mattie has significantly improved (though he still has a remaining structural issue). Even with remaining issues, Starchild and Mattie have both made significant gains in functioning after their fusions.



I'm happy to report that this is not the case.

In my own case: I had "the trifecta" of confirmed horizontal, rotational, and vertical instability. My upright MRI measurements showed severe horizontal instability, bad enough to be considered "surgical." Because of my obvious horizontal instability on imaging, Dr. B saw no need for in person invasive cervical traction.



I had severe rotational instability, in addition to the horizontal and vertical instability mentioned above. As you're aware, I've made a complete recovery -- despite having severe instability in all three directions. So it seems impossible that people with only vertical instability will improve after a fusion.

Also consider that people with each type of those 3 instabilities will benefit from invasive cervical traction, which mimics a fusion.



Looking back through this thread, it seems you had a friend pull on your head. You wrote:



Wow, really sorry to hear it.

It's important to have traction performed by someone who knows what they're doing, such as a manual physical therapist. Reason being, they will know:

1. How to keep your skull in neutral.
2. How much force to apply as they pull on it.

Traction will benefit any type of craniocervical instability: Vertical, horizontal, or rotational. It is effective because it shifts the skull into the correct *neutral* alignment. This neutral position takes care of horizontal and rotational instability. A physical therapist will also relieve cranial settling by knowing how much force to apply, and which direction to apply it. This correct force/direction will take care of vertical instability.



I see no data to indicate this, and I also don’t think Dr. Bolognese has said anything like this. But if you have some information indicating otherwise, I'd love to see it in order to make sense of it.

Hi Jeff,

I do mostly disagree with you. There are some not so minor flaws in your thinking in my opinion.

Struggle a bit at the moment so hopefully will be back in a week or so.

Meanwhile, here is the data available:

https://link.springer.com/article/10.1007/s10143-018-01070-4

In short, there is somewhat of an improval in pain, and no statistical improvement in functioning of patients! Absolutely no improvement in POTS (?!), we are talking more than 7 people here.

Let me assure you that not everybody with a HALO or fusion that has cci improves greatly with these treatments, there are dozens of stories, blog and forum entries online. How do you explain this?

Also, in your blog you mention that your symptoms got better with lifting your head (by yourself, not a practitioner), how would you know that this happened due to your horizontal instability and not due to your horizontal AND vertical instability?

Why is Dr. B not doing surgery with people that have CCI but do not respond to traction? He does not even see patients that do not react to it anymore, even though they have CCI.

There is somewhat of an availability bias at hand at the moment that I consider dangerous to some degree. You cannot look at 7 cases who improved and not look at the others who did not that you do not want or can not see. Many of the people in Henderson study could have had a diagnosis of me/cfs, you simply do not know that, there are people with me/cfs that have way less symptoms than this cohort and would probably qualify for me/cfs. So if you apply that thinking, the only study so far had a not so great outcome.

It is also biased to look at people who have me/cfs, (eds) and cci and not people that have cci without me/cfs but somewhat of the same symptoms (that you do not find on the forums for me/cfs) as long as you do not even know what is me/cfs. It is the same with hEDS, we simply do not know what it is.

I believe that CCI is and can be a problem for many me/cfs patients, but not all me/cfs patients with CCI will improve with fusion, we will see what happens in the next months and years and I would be very happy to be convinced otherwise!

Please let me say that I am more than grateful that Jen and you are putting yourself out there!Do hope that we see more improvements in me/cfs patients with these treatments obviously! We have to make sure that we are somewhat blind to our own experiences in regards to conclusions for a very (!) heterogenous patient cohort! People are desperate to get better, I am desperate to get better, we habe to be careful with assumptions.

 

[jeff_w]

Hi @bread.

Hi Jeff,

I do mostly disagree with you. There are some not so minor flaws in your thinking in my opinion.

Struggle a bit at the moment so hopefully will be back in a week or so.

Meanwhile, here is the data available:

https://link.springer.com/article/10.1007/s10143-018-01070-4

In short, there is somewhat of an improval in pain, and no statistical improvement in functioning of patients! Absolutely no improvement in POTS (?!), we are talking more than 7 people here.

Of the 20 fusion patients in the study you've linked, 18 of them also had a Chiari Malformation. This comorbidity may or may not be a factor in the ultimate outcome. We don't yet have enough data to know the answer.

Another explanation for those outcomes could be the neurosurgeons' technique. Consider: all of the 7 people with ME have improved, and they all went to either Bolognese or Gilete. Nobody in the study you've quoted went to either Bolognese or Gilete.

Let me assure you that not everybody with a HALO or fusion that has cci improves greatly with these treatments, there are dozens of stories, blog and forum entries online.

I don't think I have ever claimed that everyone with these treatments has greatly improved.

There is an availability bias at hand at the moment that I consider dangerous to some degree. You cannot look at 7 cases who improved and not look at the others who did not that you do not want to see.

I don't know of anyone with ME who has not improved after a fusion, but our current sample size is tiny, as we all know. Such people might exist. If they do exist, I would absolutely want to know about them. We need all the outcome data we can get. Good outcomes, bad outcomes, all of it.

Many of the people in Henderson study could have had a diagnosis of me/cfs, you simply do not know that, there are people with me/cfs that have way less symptoms than this cohort.

All of what you've written above is true, but none of this supports your original claim that patients with only vertical instability would have a good fusion outcome.

It is also biased to look at people who have me/cfs, (eds) and cci and not people that have cci without me/cfs but somewhat of the same symptoms (that you do not find on the forums for me/cfs) as long as you do not even know what is me/cfs. It is the same with hEDS, we simply do not know what it is.

There is a lot of overlap between ME/CFS and EDS symptoms. I think we agree that it can be impossible to categorize people without having more information about them (and without having more science about these disease constructs).

I belong to multiple groups of people with EDS who have had fusions. I have read more stories than I can count. The vast majority of people with EDS who have brainstem and/or spinal cord compression substantially improve after a fusion if they are accurately diagnosed and go to a highly-experienced neurosurgeon.

I believe that CCI is and can be a problem for many me/cfs patients, but not all me/cfs patients with CCI will improve with fusion...

There is not a single surgery (heart, knee, lung, etc.) that will have a 100% success rate. This doesn't mean that surgery should be avoided. It also doesn't mean that surgery should be feared in a manner disproportionate to the actual risks involved.

A good neurosurgeon will inform you of the potential risks of surgery. It is up to each of us to weigh the risks vs benefits and decide accordingly. Given the same information, different people will make different decisions.

we will see what happens in the next months and years and I would be very happy to be convinced otherwise!

Do hope that we see more improvements in me/cfs patients with these treatments obviously!

Yes! Time will tell.

 

[jeff_w]

Also, in your blog you mention that your symptoms got better with lifting your head (by yourself, not a practitioner)

Ah, only up to a point. After my symptoms became very severe, lifting my head by myself did nothing. I needed a manual physical therapist. Once she did traction on me, I felt so much better. She then taught my family how to do it.

Why is Dr. B not doing surgery with people that have CCI but do not respond to traction? He does not even see patients that do not react to it anymore, even though they have CCI.

Because traction mimics a fusion and is therefore an efficient method of choosing a good surgical candidate. He has so many people sending him their imaging and is using a traction trial to help weed out people who might not be good fusion candidates.

In my opinion, there are flaws with this weeding out process. One of them is that not all people will have a competent person administering the traction. These people might get no benefit from poorly-done traction and would then be denied by Dr. Bolognese. Whereas if they'd had a competent person do the traction, they might have had a good response, and they would have then been accepted by him as a good fusion candidate.

 

[Malea]

In my own case: I had "the trifecta" of confirmed horizontal, rotational, and vertical instability. My upright MRI measurements showed severe horizontal instability, bad enough to be considered "surgical." Because of my obvious horizontal instability on imaging, Dr. B saw no need for in person invasive cervical traction.

Hi @jeff_w
Do I get this right?
Rotational Instability would show up on rotational CT.
Horizontal Instability would show up on upright mri with flex/ext.
Vertical Instability would only show up with Invasive Cervical Traction.

And manual traction can help all three kind of instabilities.

And if this is correct:

How did you know that you had vertical instability if you didn’t have ICT? And do you know how the other neurosurgeons than Dr Bolognese diagnose vertical instability if they don’t do ICT?

Sorry, so many questions.

 

[HansG]

...In short, there is somewhat of an improval in pain, and no statistical improvement in functioning of patients! Absolutely no improvement in POTS (?!)...

Hi @bread. I remember myself struggling with this study first time read it. But what leads you to say. that theres just significant improvement in pain, especially no significant improvement in function? Compared to those miracle outcomes we experienced lately in the cfs/me community I would agree, but the functional outcomes in the study are signficant in general as well.

 

[godlovesatrier]

Did anyone here with milder symptoms but severe PEM none the less, experience a worsening of symptoms when they have a cold virus or a more persistent virus/bacterial infection? My symptoms peak at their worst when I get allergies, cold, virus or bacterial infection, but I do wonder if that's because any potential cranial and neck issues are exacerbated by further inflammation.

I plan to get an upright MRI in the next few months, as my symptoms are milder it would be interesting if only horizontal instability came back. Of course the test could be negative too.