Does recovery after CCI/AAI surgery exclude an ME/CFS diagnosis?

[JES]

I'm afraid I'm not part of that consensus and I find it to be, at the very least, borderline dangerous. It has the potential to include people who otherwise have treatable diseases (such as Jen), leading them to cease looking for a solution. Fortunately, in her case, she persisted. But many won't.

It sounds to me like a diagnosis of ME/CFS as you defined it can only be accepted if every other existing disease on the planet is excluded. This isn't practically possible, at least not for 99% of the population. I don't see how a doctor would ever be able to confidently diagnose anyone with ME/CFS under this model. Most forum members would not have an ME/CFS diagnosis if we go by the criteria of having everything else excluded. We would just be lumped to some medically unknown category and be left even more neglected.

Having an ME/CFS diagnosis shouldn't in any way imply one should stop searching for solutions, I think CFS/ME patients based on my experiences are generally speaking extremely willing to look outside the box for any treatment solutions and diagnoses. There is still a chance to recover, maybe in the 5% ballpark, but recoveries do take place. What the cases of Jeff and Jen have demonstrated to me is that there is another, treatable aspect for some people diagnosed with ME/CFS and that CCI is likely one pathway that could lead someone to develop ME/CFS.

Having said that, I think it's obvious that a CCI surgery will only be of help for a subgroup. I did the same experimentations with manual neck traction a year ago as a few other people here. I didn't notice any massive improvements in my POTS symptoms, which are pretty bad, from doing half an hour neck traction sessions for a week. During the stretching I felt as though blood flow to the brain was slightly increased and the first few days I felt as if my parasympathetic nervous system was slightly more active, which is the same effect I got from a vagus nerve stimulation device. After the first day or two I began to feel slightly worse than baseline, which usually happens following any hacks I've tried to activate the parasympathetic nervous system. I might retrial at some point, but I reckon I should have felt a more dramatic improvement if there really was something compressing my brainstem.

 

[rel8ted]

Yes, just like she was falsely and incorrectly diagnosed with ME. That was my point!

Opinion. That is your opinion. She met the criteria for ME/CFS.

 

[rel8ted]

Is anyone really curious about what the Stanford folks think about the Mechnical Theory recent results?
Has Ron Davis made any public comments on this?

I am not looking for Ron Davis to make any public statement on this. It is not his area of research. I think at this point, in the realm of research, it is interesting. To (most) patients it is exciting and a source of possible hope. I think it would be unlikely for him to do anything to add to the buzz and excitement. We don’t know yet if this is a cure or a sign of a possible cause. I expect RON Davis aa well as other researches to be cautious & guarded. If anything, they may mention that they have heard about it and it should be taken into consideration for a study.

 

[WinterWren]

At the risk of annoying many people here, does it really make sense to continue to say one had SEID/CFS/ME when an alternative diagnosis led to what appears to be a cure/remission?

Anyway, it appears I'm lucky enough to have not one but two CCI specialists within a radius of 40 miles of where I live so I may very well schedule an appointment to see what comes out of it. But as with many other previous hypothesis I'm going to maintain a skeptical attitude. That being said my mother always had neck problems for which, to this day, she refuses to have surgery for, due to the risk involved.

I’m seeing this discussion come up in a lot of places and the point I find most interesting is that, according to people researching this, CCI doesn’t conventionally include symptoms that are similar to ME. They explain the additional weird symptoms that Jenn had but not the ME symptoms. Not PEM for example. So if someone realizes they have a disease like MS and that all their symptoms can be explained by MS, then they were very likely misdiagnosed with ME.

I think that neurologists and ME researchers need to figure out what’s going on here (I won’t hold my breath). I also wonder if these surgeries could have some sort of effect on ME that’s not directly related to CCI or whatever, for example influencing intracranial pressure or blood flow (I don’t know enough to even guess but just something other than the brain stem compression).

 

[CactusJilly]

Is anyone really curious about what the Stanford folks think about the Mechnical Theory recent results?
Has Ron Davis made any public comments on this?

I don't know about Ron Davis, but it did NOT go well when I brought it up with my doctor at the Stanford ME Clinic (where I have been a patient for a couple years).

 

[frozenborderline]

Is anyone really curious about what the Stanford folks think about the Mechnical Theory recent results?
Has Ron Davis made any public comments on this?

. In fact, in a recent talk at my old college that I had to drop out of, Ron did address a question on cci, possibly for the first time The school has been very slow to release the video. If you are interested in getting it, please politely email pstone@hampshire and media@hampshire.edu, asking when the February Unrest screening and event with Ron Davis that was recorded, will be released.

 

[frozenborderline]

Jen was also diagnosed with conversion disorder. Presumably, she met the criteria. Is Jen, then, also in remission from conversion disorder?

not sure that Jen met the criteria for conversion disorder at all, or if it is ever a valid diagnostic criteria. These are too separate questions. But being diagnosed with conversion disorder is often not by rigorous criteria by a psychiatrist but by doctors whocant find anything wrong with you and use it as a dx of exclusion. WHich even experts in psychiatry who believ in psychosomatic illness would probably dIsagree with.

f SEID/CFS/ME is simply a set of symptoms and a (maybe temporary) placeholder for something else that matches those symptoms, then it's not a real disease.

It’s not a placeholder, but we don’t know the fundamental etiology. It’s a diagnosis of inclusion, ideally. Jen fit all the crietari of ICC ME as well As having lots of labwork consistent with ME although not necessary to diagnose it. If Jen didnt have ME, very few of us do, many of us at least start out as less classic ME cases

 

[Jackdaw]

We can’t draw a conclusion on whether someone was correctly diagnosed who has responded to these spinal surgeries because we do not know enough yet.

Either CCI and spinal stenosis etc can present like ME but it is actually a totally separate structural disease. (This begs the question of whether people from groups with a risk of CCI like EDS sufferers have a higher rate of ME.)

Or ME is a disease destination reached by variety of ways, one being CCI. Other groups yet to be identified but maybe autoimmune. The brain and spinal cord are in our name. It could be that the brain stem is where it’s at for all ME but one issue is mechanical and another is autoimmune and another viral etc. I am reminded of the post mortem findings of the condition of the spinal cord of ME sufferers.

Or all of ME could be caused by this mechanical issue but I doubt that somehow. It’s interesting that both Jeff and Jen eventually had symptoms not typical of ME that prompted them down the CCI route. It is also possible that the CCI is a separate issue but treatment creates a change in the body that allows healing of ME.

So many unknowns. The need for a diagnostic test is so important because although a broad church has its upsides, it does not help in scientific studies to have the incorrectly diagnosed. I feel something that has held research back is we can never study with confidence in the cohort.

Meanwhile we have to encourage researchers to look at this mechanical angle, even if it proves not to be ME and just to present similarly, it still may give us an insight into how ME works. It is interesting that autonomic issues seem prominent in CCI and for many ME sufferers but not all those with dysautonomia get PEM. PEM is the heart of ME and its cause is still so mysterious.

 

[gm286]

@Jackdaw This is why I really think that more attention should be payed (to an extent) to labels... This area is a case in point. Jennifer was writing about some crucially interesting things -- I would almost wager as interesting if not more so than her remission (I dare say...). The article in question: Are a subset of us members of a lost tribe?

Why is this not being discussed more? Why is it not possible that there be a hybrid state between chronic fatigue syndrome and hypermobility? She says she is not (or does not fit the criteria for) H/EDS.

In my diagnosis Dr Gilete identified brain stem compression. If my state was not as compromised as Jen or Jeff's this does not mean I did not have a very clear hypermobility problem. My ligaments were faulty. Something in my collagen is faulty.

Throughout her article, Jennifer insists she is not an EDS patient because she does not fit the criteria, especially also given that, at the cervical junction (where the brain meets the spinal cord) she affirms she was *never hypermobile*.

I was. I think Jeff may have been too. When doing the upright MRI, I could twist my head farther right than I could left. The angle differences came up in a radiology evaluation by the person who pioneered MRI tech.

If we aren't going to get at what has caused CFS/ME in everybody just yet, maybe we should be asking the kind of hybrid question which Jennifer is ostensibly flirting with in her articles. We should be asking: why is there collagen failure among CFS/ME patients? why are there reports of an enzyme, prolyl 4-hydroxylase, which differs among ME/CFS patients and controls (this enzyme codes for collagen)? why are fibromyalgia and ME/CFS close cousins? why haven't we found any evidence for autoimmunity?

Yesterday I received results for a WGS (whole genome sequencing) which took 6-8 months to return to me (Dante Labs). The first several results describe some raised risk for autoimmune conditions such as MS, rheumatoid arthritis, ankylosing spondylitis, and Graves disease, as well as some folate dysregulation.

First on the list though was possible immunodeficiency (heterozygous) for ficolin-3 ("a group of proteins which consist of a collagen-like domain"). Ficolin-3 plays a role in the complementary immune system. I have no clue how this contributes to fatigue, pain and inflammation. However there is perhaps a link to collagen and polysaccharides, and in my case, low levels of FCN perhaps might require I assist with polysaccharides (I am guessing). The Cusack protocol claims to help people who were dx'd with CCI precisely by administering polysaccharides (via aloe or mushrooms).

Re: my ankylosing spondylitis, I've had negative autoantibodies for HLA-B27, which correlates with congenital risk for spondylitis, ulcerative colitis, etc. Perhaps, then, my degenerating lumbar disc and lax cervical ligaments draw back to issues with collagen deterioration. It is a lot in line with previous issues I have had with inflammatory digestive system, major lower back problems and also perhaps my CCI... Ficolin-3 regulates opportunistic infections, not obligatory contaminants/infections. It binds to (bacterial) polysaccharides to activate the lectin pathway (complementary immune system). Deficient FCN3 means weaker lectin pathway, thus weaker immune system.

To not divert too far away from Jen's thread, I also wouldn't be surprised if enterovirus (coxsackie B) had something to do with my issues.

This is all CFS/ME compatible but also opens a space for a hybrid diagnostic such as hypermobility disorder (especially in the case of CCI-afflicted ME patients).

 

[Inara]

Yes, just like she was falsely and incorrectly diagnosed with ME. That was my point

There is no scientific proof that a disease/illness called conversion disorder ("new" for hysteria; today it is called somatoform disorder, functional disorder etc.) exists. It is a label for people whose behavior is classified as "abnormal" by people who view themselves as normal and define what is normal. "Conversion disorder" means it's the psyche that - wrongly and in a sick manner - transforms feelings/unconscious thoughts into bodily symptoms. The solution is to cure the psyche, then the bodily symptoms will disappear.
In my view, conversion disorder isn't well-defined; it's subject to subjective views. Some doctors confess they diagnose things like somatoform disorder, amongst others, according to their sympathy/antipathy for a patient.

On the other hand, symptoms are real - they're not always measurable with our means though. ME is well-defined (by CCC/ICC). If there is a certain pattern of symptoms, this is called ME at this point of time.

So in my view, a "diagnosis" of conversion disorder is always incorrect because there is no proof of the existence of a psyche that wrongly transforms feelings into symptoms. On the other hand, if ME criteria are fulfilled, this correctly says that a person has ME typical symptoms which are part of reality.

 

[Jackdaw]

@gm286 I have become completely bedridden in the last 15 months after 14 years with ME. For the first time I am noticing problems with my connective tissue, some of my finger joints are bending backwards for instance. Whether this is caused by my ME being very severe I am unsure. I would like advice on what I could do with my diet that may help this deterioration but haven’t had the energy to get my head around it. I think the overlap with different diseases needs focus. There are so many clues known by patients but largely ignored by research.

I don’t agree that there is no evidence for autoimmunity. It’s not a sure thing yet but there is research pointing that way for a portion of sufferers.

 

[gm286]

@Jackdaw without a shadow of a doubt, I would point you to the Cusack protocol group. They use mainly polysaccharides (and a variety of other supplements) to help maintain collagen. I don't understand the specific science of it but Deborah Cusack's protocol is aimed mostly at people with HEDS (hypermobile Ehlers danlos syndrome) some among whom struggle with CCI and other connective tissue ailments.

If you'd like me to send you the pdf supplements list I can do that (a single-page, extremely thorough document).

 

[sunshine44]

Very interesting. My mind is going to collagen and ligaments as well. In 2016 when I crashed in one week from a herbal lyme treatment with a naturopath, my first signs were severe agitation, exhaustion and brachycardia then I awoke in middle of the night feeling like rubber...my body felt like it could move any which way.

I am now bedridden in severe state and ligaments are very bizarre and bend easily and something is absolutely going on in neck/head/spine. Standard treatment of you are fine even though insert some of the worst symptoms and I could hardly move so drs and hospitals have been very little help.

Why is this happening to our collagen/ligaments? Is the deeper answer I would like to investigate. It seemed to come on very suddenly for me.

 

[Jackdaw]

@gm286 Yes, if you can do that, that would be very kind of you. Do you follow it and have you noticed benefits?

 

[gm286]

@Jackdaw I have. They follow something akin to the Phoenix Rising philosophy of start low and go slow. But all things considered to me this equates to: take one of each a day (iteratively, adding the new supplements slowly though...).

A small, insignificant instance of an example: my nails have been brittle (vertical ridges) throughout my entire twenties. They have *significantly* reduced since being on the protocol. I feel better. On the group, many explain that it takes a while to feel well (Deborah suggests 6 months to one year trial) and some don't feel well at all, even after switching supplements around.

A more significant change: I no longer get the bizarre vertigo / dizziness when I move my head around especially left and right. I don't know if this was due to increased cranial pressure from the very start (I had effectively quit smoking around the time I improved)... but I had also started the mushrooms before quitting cigarettes entirely. Either way, the dizziness/vertigo has disappeared.

I randomly came upon one of the supplements while I was on a short holiday. There was a herbalist selling Maitake mushroom. That is one of the two polysaccharides which Deborah suggests we use. I felt better very quickly, not knowing for sure if it was not a placebo, but being damn sure. I'll send you the file by PM.

EDIT. Today in response to a question about CCI followup, someone (on the Cusack protocol group) posted their scans showing that their brainstem compression / CCI had obviously improved. The MRI's were a before and after (2013 / 2016). She describes (in the second image) that the odontoid peg was no longer tipping/pushing into the brainstem... and one can see the difference in the bulge, in the before and after scans. I'll just insert her words:

"The long part going down into the neck is the brain stem. The finger shaped piece to the left is the odontoid, part of your second cervical vertebra. It should be held tightly up against your first cervical vertebra. When it isn’t, it retroflexes - pulls away and points backward toward the back of your skull. This puts pressure on the brainstem. (In bad cases it can push up into your skull, though mine didn’t. ) in 2013 mine was retroflexed and my brainstem had a little bend in it. In 2016 it’s moved forward again and my brainstem is quite straight."

What helped for her: Regular chiropractic, physical therapy, and careful yoga. She elaborates more, as some including myself asked in further detail.

 

[sunshine44]

very

@Jackdaw I have. They follow something akin to the Phoenix Rising philosophy of start low and go slow. But all things considered to me this equates to: take one of each a day (iteratively, adding the new supplements slowly though...).

A small, insignificant instance of an example: my nails have been brittle (vertical ridges) throughout my entire twenties. They have *significantly* reduced since being on the protocol. I feel better. On the group, many explain that it takes a while to feel well (Deborah suggests 6 months to one year trial) and some don't feel well at all, even after switching supplements around.

A more significant change: I no longer get the bizarre vertigo / dizziness when I move my head around especially left and right. I don't know if this was due to increased cranial pressure from the very start (I had effectively quit smoking around the time I improved)... but I had also started the mushrooms before quitting cigarettes entirely. Either way, the dizziness/vertigo has disappeared.

I randomly came upon one of the supplements while I was on a short holiday. There was a herbalist selling Maitake mushroom. That is one of the two polysaccharides which Deborah suggests we use. I felt better very quickly, not knowing for sure if it was not a placebo, but being damn sure. I'll send you the file by PM.

EDIT. Today in response to a question about CCI followup, someone (on the Cusack protocol group) posted their scans showing that their brainstem compression / CCI had obviously improved. The MRI's were a before and after (2013 / 2016). She describes (in the second image) that the odontoid peg was no longer tipping/pushing into the brainstem... and one can see the difference in the bulge, in the before and after scans. I'll just insert her words:

"The long part going down into the neck is the brain stem. The finger shaped piece to the left is the odontoid, part of your second cervical vertebra. It should be held tightly up against your first cervical vertebra. When it isn’t, it retroflexes - pulls away and points backward toward the back of your skull. This puts pressure on the brainstem. (In bad cases it can push up into your skull, though mine didn’t. ) in 2013 mine was retroflexed and my brainstem had a little bend in it. In 2016 it’s moved forward again and my brainstem is quite straight."

What helped for her: Regular chiropractic, physical therapy, and careful yoga. She elaborates more, as some including myself asked in further detail.

very interesting.

Can you point me to direction I can read more about her case?

 

[sunshine44]

Oh, I see...the Cusack group protocol...thank you

 

[gm286]

Oh, I see...the Cusack group protocol...thank you

Just to clarify a touch more. My odontoid peg does not bulge into the brainstem in a normal upright position. However, when I turn my head to the right, there is subluxation in the ligaments (one ligament crosses too far below the other or something to that effect). And for me, that is when brainstem compression is visible and manifest.

So I suppose it differs for each person. I think for the person who was discussing her CCI, the odontoid peg was compressing the brainstem in a normal upright position. The scans resemble my own (the normal upright snapshots where we do not move the head). If any of this is erroneous I will edit (will double check with her). I don’t think the observations are off though.

I would hope that strengthening the ligaments will help long term regardless of the context in which brainstem compression is worst.

 

[Wayne]

I would hope that strengthening the ligaments will help long term regardless of the context in which brainstem compression is worst.

Hi @gm286 -- Just to briefly mention, I wrote about a potential way to strengthen ligaments--using a bioidentical peptide called BPC-157--in THIS POST.

 

[nanonug]

There is no scientific proof that a disease/illness called conversion disorder ("new" for hysteria; today it is called somatoform disorder, functional disorder etc.) exists.

Not only does the Mayo Clinic think otherwise but they are apparently able to put conversion disorder into remission: Diagnosis and Treatment for a Mysterious Illness Turn Despair Into Hope.