Jen Brea: My ME is in remission

WillowJ said:
Anyhow my purpose in coming to this thread was to leave this here:
https://www.s4me.info/threads/impro...t-of-cervical-spinal-stenosis-2018-rowe.2226/

There are images but I am not a neurologist.
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The images here are straightforward. They show narrowing of the spinal canal in all cases. A plain x-ray would have been just as good to show that because the narrowing is due to bone. In addition the first two show distortion of the cord that looks significant. The third does not.

Appearances like this will be extremely common. My neck is probably as bad as number 3. It might be as bad as number 2. The sorts of patients we used to send for surgery had much much worse changes.

These changes are obviously unrelated to the CCI situation.
 
Jonathan Edwards said:
As everyone here knows, ME symptoms can appear to improve very significantly for short periods in all sorts of circumstances.
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Actually, I've never experienced that in over 30 years of being ill - certainly not instantaneously, if that's what the traction test is doing.

In the simplest terms we cannot in any way discount a 'placebo effect' from a traction test.
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I think this is an interesting question generally, because sudden and enormous improvement seems to be very rare, from my own experience and my reading of loads of forum posts over the past ten years. It might be interesting to do a poll, because I think it would inform how likely such experiences really are likely to be placebo effects.
 
Sasha said:
Actually, I've never experienced that in over 30 years of being ill - certainly not instantaneously, if that's what the traction test is doing.



I think this is an interesting question generally, because sudden and enormous improvement seems to be very rare, from my own experience and my reading of loads of forum posts over the past ten years. It might be interesting to do a poll, because I think it would inform how likely such experiences really are likely to be placebo effects.
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Some people are relapsing/remitting. Like you i am not.
 
Sasha said:
Actually, I've never experienced that in over 30 years of being ill - certainly not instantaneously, if that's what the traction test is doing.



I think this is an interesting question generally, because sudden and enormous improvement seems to be very rare, from my own experience and my reading of loads of forum posts over the past ten years. It might be interesting to do a poll, because I think it would inform how likely such experiences really are likely to be placebo effects.
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Of course the sample you might poll from here might be skewed towards those that don’t get remission very often or suddenly?

I have never had a remission in 6 years sudden or otherwise btw
 
Mithriel said:
Also Dr David Bell did a study where he looked at how his patients were doing many years after the epidemic. He foudn that a lot of them said they were recovered but that when you looked at what they did they were still very restricted. He concluded that they no longer experienced OI or POTS so they felt better but were still actually suffering from ME. If this operation cures OI then patients symptoms may seem much better but the ME is still going on in the background.
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Not if ME is a consequence of OI/POTS/ANS dysfunction, which we cannot rule out. Only time will tell if the reported recoveries will last, which is why I believe Jen wisely used the term "remission" instead of recovery. But anyhow, we now have two high-profile ME/CFS patients that report they no longer have symptoms of ME. We can speculate about what exact process lead to their remission, but I see little reason to doubt their stories and honesty that in fact they have gone to remission.
 
Suffolkres said:
"The other significant factor is her (Jen's) initial acute problem (in addition to her ME/CFS diagnosis) and diagnosis of thyroid dysfunction/disease/thyroid cancer.

Jen is not the first person I know to have followed the pathway of ME/CFS and then to receive this diagnosis of thyroid cancer; after treatment, experiencing a 'recovery' from ME.
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I don't find this plausible as an explanation for Jen's remission/recovery. After her thyroidectomy, her ME got WORSE, as well as experiencing new symptoms (those which alerted her to CCI). After her neurosurgeries, all her symptoms got better. It seems clear to me that her remission is related to her neurosurgeries, not to her thyroid surgery.
 
Sasha said:
I think this is an interesting question generally, because sudden and enormous improvement seems to be very rare, from my own experience and my reading of loads of forum posts over the past ten years. It might be interesting to do a poll, because I think it would inform how likely such experiences really are likely to be placebo effects.
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Two thoughts. One is, as I put in the post, this may well not be a placebo effect but an effect on CNS function. When I was given my hearing aids my sudden ability to hear birds I had not heard for years was not a placebo effect.

The second is that my gut feeling is that there may well be a spectrum, possibly with two distinct 'end types' for ME, with some people having a rather fixed level of severity and others susceptible to rapid, if often temporary, lifting of symptoms. Sudden improvement does seem to be uncommon, but a number of people on the forums have mentioned it as occurring in the past.
 
Jonathan Edwards said:
It would be very easy - at least in terms of checking the validity of the imaging. The people involved would just follow the responsible path that all medical researchers looking at new treatments should follow
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they’re not medical researchers looking at new treatments. They’re surgeons performing a routine surgery on people that have a measurable cervical issue , and they have little knowledge of ME in my understanding. It’s my understanding that Henderson and Bolognese have published a lot of stuff both on surgical techniques , diagnostic aspects like the various angles used to diagnose this.
I’m still pretty tired but will pull up this literature later or maybe you can look for it. Or maybe @Jeff_w or @JenB can when they get a chance. Some of what Henderson has published also discusses comorbidities like MCAS , EDS, and also discusses the clinical presentation of brainstem compression, and surgical results.


Jonathan Edwards said:
I am not a neurosurgeon but I worked alongside and referred patients to Alan Crockard, who at the time was considered perhaps the best craniocervical surgeon in the world and trained Henderson. I looked after people with CCI.
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The literature around CCI is changing all the time, and I think that cci in the absence of EDS, other known disease that affects collagen, or head trauma is something that even the surgeons treating Jeff and Jen probably had little knowledge of. (To be clear, Jeff said he had EDS, but Jen didn’t, and more and more people diagnosed with CCI recently have not had EDS or head trauma ). So it’s probably either a new phenomenon or a phenomenon that has never been looked for because why would people think to look for cci in someone that has had no head trauma, no EDS, no RA, no Down syndrome, etc. I think it’s a combination of both. Probably not entirely new, but definitely skyrocketing in prevalence? Why? It really begs the question. I sincerely doubt that it is because it is being overdiagnosed. That’s one possibility. But the other possibilities are more strange. And we shall see.

But also curious, Henderson is one of the people doing these diagnoses and also surgeries. If your argument is you worked with someone who trained Henderson , you seem to be implying Henderson is an expert, or at least considered one. So then why the idea that he’s involved in a massive scam?
Jonathan Edwards said:
I have come to the conclusion that I am 90% sure that there is a major scam going on in the commercial pain control sector focused on CCI in the context of 'EDS'. There is promotional material on the net going through all the stuff about upright MRIs and cervical traction tests apparently for 'EDS' CCI in the context of very varied and vague symptoms
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People also consider ME symptoms “vague” because they encompass so many different body systems. Any brainstem compression would cause pretty broad symptom set because the brainstem is involved in so many body systems. It could obviously cause autonomic issues, headaches, vertigo, seizures, central apnea, immune issues, etc. the autonomic issues alone would be enough to explain ME if you believe David systrom or David bell (sort of) , hypovolemia, hypoperfuson, preload failure—all of these could explain many of the symptoms of ME, they just need a cause. There’s a Naviaux quote about the role of the brainstem in the CDR that I need to dig up once I’m feeling better.
Jonathan Edwards said:
But since the estimate is that one person in 75,000 will have this problem there is something not right about the presentation.
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Or there’s not something right about that estimate. I mean, if nobody SCREENS for cci, because it is thought to be rare, how do we know it’s really rare? Sort of self fulfilling prophecy.
Jonathan Edwards said:
The promotional material talks about upright MRI and gives example pictures. The first thing I noted is that the reason for the upright posture is to identify a Chiari abnormality - the cerebellum slipping down through the craniocervical junction. It is not to identify CCI itself.
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Many of the top neurosurgeons like upright mris because the effect of gravity often shows more laxity, but one of them uses supine mris of the cervical spine. If you are curious why many clinicians use upright mris to diagnose this, many of these clinicians probably have answered this somewhere, in their research or presentations.
Jonathan Edwards said:
The other thing is that CCI is judged by an angle drawn on the image. The example shown has an angle that is said to be abnormal but the picture does not show any convincing neuropathology.
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This is an interesting point. I would personally love to see a 50 year history of the use of clivo axial angle etc and what was considered to be abnormal. It does seem that some people with worse measurements are more functional than people with more mild cci , but there’s so much we don’t know about neurology that I’m not sure how to explain that. People with hydrocephalus and very little brain tissue can sometimes have normal IQs.

I think that normal ranges can have some problems with defining them in an age where chronic illnesses and various kinds of pathology seem to be rising in general. The normal ranges for testosterone, for example, are consistently being lowered. The acceptable ranges for various industrial pollutants both in the body and in the environment seem to change based on a variety of circumstances.

So I would love to see studies that both compare these angles to healthy controls but also look at them over fifty years or so. That would be great. Does that exist?

But also I do think that this is the reason clinicians don’t just use the angles, but also use the symptoms and response to traction to determine if someone’s will be a good candidate for surgery. If someone’s clivo axial angle showed brainstem compression/cci and they were running marathons, it would make no sense to open them up. But in jens case, she stopped breathing while awake. Seems like the surgery was warranted, and I’m glad she was in good hands, and didn’t wait for years of research on the connection btwn ME and CCI.

The publications by Henderson also go into the mechanisms of neural injury that happen at the cellular level from the brainstem being compressed. While that is not his area of expertise obviously, he certainly is interested in the actual mechanism of injury here rather than just looking at some angles and deciding to cut into people. I hope that Michael Van Elzakkers work on brainstem inflammation will uncover some stuff here. While there no guarantee that brainstem inflammation in the way that he is measuring would result from neural injury, it seems quite possible it would. After all, they are measuring microglial activation as a proxy for inflammation, and microglial activation occurs in neural injury. However I’m just a layperson and I don’t know if the brain would “adapt” to that neural injury with less microglial activation once it becomes chronic. It seems that maybe it would adapt and then you wouldn’t see excessive inflammation in the brainstem but instead a widespread hypometabolism resulting from the homeostat being broken OR as a protective mechanism against the oxidative stress caused by neural injury.

I actually don’t think cci is the ultimate cause of ME so I’m not some kind of crusader here. But I’m almost certain it’s involved intimately. The problem is what is causing it? I’m sure there’s something upstream and this is what’s concerns me with my resolving it by surgery, as o believe whatever caused the cci could cause further regeneration of connective tissues lower in the spine and ultimately cause a relapse if The cause of the connective tissue problems isnt discovered. There’s lots of conjecture on this but we don’t even have the basics of studying cci in ME yet, so we have to start there.
 
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Hip said:
That's an interesting idea! It might be worthwhile conducting a poll asking all those 20 ME/CFS patients who have tested positive for CCI/AAI whether they had a substantial course of fluoroquinolones in previous years.
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ill start ! I’ve never had a fluoroquinolone antibiotic. Only tetracyclines and beta lactams
 
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debored13 said:
ill start ! I’ve never had a fluoroquinolone antibiotic. Only tetracyclines and beta lactams
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I would doubt a fluoroquinolone connection to CCI/AAI in the general case, but it's possible there could be a subset with CCI/AAI who already had some ligament weakening due to fluoroquinolones which exacerbated the issue.
 
This article is mostly about intracranial hypertension.

Haven't done a literature search but it seems like the main symptoms of (idiopathic) intracranial hypertension (IIH) are headaches and visual problems. Almost all IIH patients have what is called ‘papilloedema’, a swelling of the optic disc, and approximately a quarter complain of vision loss.

IIH is pretty rare with an estimated prevalence estimate of 1-10 per 100.000. There seems to be a strong link with obesity and being female so that the vast majority (up to 90%) of patients are middle-aged obese women.

Given that the symptoms of IIH are somewhat different than that of ME/CFS and the estimated prevalence of IIH is 20-40 times lower than that of ME/CFS, it seems unlikely that many ME/CFS patients have undiagnosed IIH. Or am I missing something?
 
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