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

[nanonug]

THIS THREAD WAS STARTED FROM OFF-TOPIC POSTS WHICH WERE MOVED FROM THIS THREAD: https://forums.phoenixrising.me/threads/my-me-is-in-remission.76324/

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.

 

[Rufous McKinney]

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?

Maybe this is: our cure.

It feels: unavailable. Like the 1/2 million dollar pill I just read about: these pharmaceuticals which nobody can afford.

Procedures which don't seem to exist unless some type of miracle takes place. (including logisticle miracles).

I cannot fathom undertaking these surgeries. I'm fairly convinced I wanted the 20/20 operation 20 plus years ago: and I still do. The spector of what is required to navigate these arenas, pull off these consultations...

I'm just not brave enough i guess. I just cannot fathom how these types of fixes will ever happen here, or in a manner that actually helps a larger group of people.

But it IS really great news in terms of: further defining a whole category of issues that are tied together...once we figure out how. And how to link the Mechanical with the Physiological (see Stanford, etc).

Yet : I have spinal birth defects on Day 1. I'm sure I have stenosis someplace in this area. They took me to the doctor at 12 for my spine. And at 12: I receive another category of: No medical treatment.

There is also a German- birth defect, I only learned about a month ago...let me go try to find that: it was interesting to discover this also exists. These things can clearly create: narrowings, and if anything inflames, is trouble.

 

[Rufous McKinney]

And at 12: I receive another category of: No medical treatment.

Additional note: I remember this moment quite clearly. I am unable to stand up straight like everybody else and your 12. My stepgrandmother would admonish me regarding my posture at 8. I resented this, I hated it. I'm getting teased at camp about: My crooked back. I am having severe lower back pain, cannot sit in the pew at church. (that triggered the doctor visit). (bone doctor).

Bone doctor concludes: this is your own Unique Beauty and Personality. (translation-your back is a mess, good luck, enjoy life, no treatment).

 

[ljimbo423]

Yet : I have spinal birth defects on Day 1. I'm sure I have stenosis someplace in this area. They took me to the doctor at 12 for my spine. And at 12: I receive another category of: No medical treatment.

I have had back and neck problems for many years. My neck is the worst and vertebrae in my neck are constantly slipping out of place. I have the same problem with my middle and lower back.

I don't think I have CCI causing my CFS but I could be wrong. I'm certainly open to the possibility and will persue that if I feel I need to.

 

[Rufous McKinney]

I have had back and neck problems for many years. My neck is the worst and vertebrae in my neck are constantly slipping out of place. I have the same problem with my middle and lower back.

We sound related!!! Technically: many of us are!! (ok ultimately, who produced MItochondria 1?) (lucy?).

For the last four months; my neck vertebrae only on the right side, are just unraveling and popping its so WEIRD.
I don't even understand what the heck makes all this noise. Its energetic "wind" so I treat it with diet, herbs as wind in CTM. I'm not on that diet here lately consistently enough to maintain improvements. (ok, guilty of reverting).

For years : it has felt like the acute symptoms radiate from: the cervical/base of skull/ top. of spine. The squeeze here. If the inflamming could be controlled, then I think I could be more functional.

The operation: widening that space there at the base of the skull: sounds more doable to me personally than the fusion surgeries.

This is all guessing, as I've not been tested.

 

[Mary]

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?

I think it does make sense to say that one had ME/CFS, even it is in remission due to CCI surgery, because JenB and Jeff_w do/did have ME/CFS, according to the diagnostic criteria. Apparently brain stem compression, however it originates, causes ME/CFS for some people. So I wouldn't say CCI was an alternative diagnosis to ME/CFS, but, rather, an additional diagnosis. I would also assume that not all people with CCI develop ME/CFS, but it would be interesting to know how many do.

 

[nanonug]

I think it does make sense to say that one had ME/CFS, even it is in remission due to CCI surgery, because JenB and Jeff_w do/did have ME/CFS, according to the diagnostic criteria.

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

If 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. In this case, SEID/CFS/ME is a particular manifestation of sickness behavior and the work of people such as Ron Davis is purely in vain. I'm not prepared, for now, to conclude that this is indeed the case.

 

[Rufous McKinney]

n this case, SEID/CFS/ME is a particular manifestation of sickness behavior

But how can sickness behavior: be a cause?

Its a response to messages being received. The messages: are they the cause?

Will sift to the theory thread.

 

[Mary]

@nanonug - we don't have a diagnostic test for ME/CFS, right now. It's too bad we don't - if we had one, we wouldn't have to be trying to figure this out and we might be taken more seriously by the medical profession. All we can do right now to diagnose ME/CFS, that I'm aware of, is compare our symptoms to the diagnostic criteria. If you know of another way to diagnose it, please let us know.

 

[maybe some day]

If 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. In this case, SEID/CFS/ME is a particular manifestation of sickness behavior and the work of people such as Ron Davis is purely in vain. I'm not prepared, for now, to conclude that this is indeed the case.

I have to agree. There must be quite a few more symptons these folks had that arent typical of cfs/me. Although its great to hear some have recovered from results of the procedure, Im not ready to get on that path.

 

[maybe some day]

@nanonug - we don't have a diagnostic test for ME/CFS, right now. It's too bad we don't - if we had one, we wouldn't have to be trying to figure this out and we might be taken more seriously by the medical profession. All we can do right now to diagnose ME/CFS, that I'm aware of, is compare our symptoms to the diagnostic criteria. If you know of another way to diagnose it, please let us know.

The nanoneedle seems to be up and coming from ron davis. Likely the only thing thus far that distinguishes sick vs healthy controls

 

[Rufous McKinney]

The nanoneedle seems to be up and coming from ron davis.

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?

 

[nanonug]

But how can sickness behavior: be a cause?
Its a response to messages being received. The messages: are they the cause?

Inflammatory cytokines are the "messages" that trigger sickness behavior. My PEM is very close to traditional sickness behavior minus the fever.

 

[Gingergrrl]

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

But she was falsely and incorrectly diagnosed with a "conversion disorder" just like most of us have been incorrectly diagnosed along the way. She did not meet the criteria for a conversion disorder any more than I met the criteria for "food anxiety" when I was hospitalized with anaphylaxis due to MCAS (by a random doctor who met me for five minutes, not my main treating doctors).

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?

I don't understand why someone cannot have more than one diagnosis? I ultimately had four separate diagnoses (some which are now in complete remission, some in partial remission, and some managed with medications). We do not yet know how all of these things are linked together.

All we can do right now to diagnose ME/CFS, that I'm aware of, is compare our symptoms to the diagnostic criteria. If you know of another way to diagnose it, please let us know.

That is my understanding as well. That there is a set of criteria that diagnoses ME/CFS and Jen met the full criteria a million times over (prior to her surgeries for CCI and tethered cord). There is no bio-marker or any other way to diagnose at present.

 

[nanonug]

But she was falsely and incorrectly diagnosed with a "conversion disorder"

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

 

[Murph]

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

Basically you're approaching an area of great uncertainty. We don't know what causes ME/CFS. That's an unknown. It could be caused by other known things. That raises a question of whether me/cfs exists independently, as you've correctly identified.

However. At this stage - amid the uncertainty - how to approach that uncertainty is more a question of values/politics than anything else. There is an emerging consensus that we should have a broad church. That we should accept as ME/CFS sufferers anyone who meets the criteria.

The alternative - excommunicating anyone whose symptoms go away, or anyone who responds to treatment, or anyone who picks up a secondary diagnosis, or any combination of these - whittles ME/CFS down to a hard nub of unsolveable pure cases. So the reason not to say "Aha! that person never had me/cfs" is not because that statement is provably 100% untrue, but that it is gatekeeping. It transforms me/cfs into a special thing that is defined not by symptoms but by the lack of a reason for them.

It creates division when the community needs inclusion and strength. And of all people to excommunicate and divide from the community, Jennifer Brea is the last one I'd choose.

 

[Mary]

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

What method are you using to say that Jen was incorrectly diagnosed with ME/CFS? How would you diagnose someone with ME/CFS, apart from comparing symptoms to diagnostic criteria?

 

[nanonug]

There is an emerging consensus that we should have a broad church. That we should accept as ME/CFS sufferers anyone who meets the criteria.

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.

And of all people to excommunicate and divide from the community, Jennifer Brea is the last one I'd choose.

This comes across to me as "Shut up, your opinion might scare away Jen Brea!" I would never claim to have authority over anyone to be able to excommunicating them. But I assert my right to think for myself and express my opinions even if they are unpopular.

 

[Murph]

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.



This comes across to me as "Shut up, your opinion might scare away Jen Brea!" I would never claim to have authority over anyone to be able to excommunicating them. But I assert my right to think for myself and express my opinions even if they are unpopular.

Just so you know, i'd also oppose excommunicating anyone who disagrees with an emerging consensus! As I said, a broad church.

 

[Rufous McKinney]

Inflammatory cytokines are the "messages" that trigger sickness behavior.

So those aren't the cause, either (?). The inflammatory messages are being conveyed by "something" or triggered by "something".

(in theory, could we be cured by nuking the group of cells which constitute: the sickness detectors?)...I would hypothesize NO. We would still: be sick, even if the "sickness response" was neutered.