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

[nanonug]

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.

I didn't define anything. Feel free to use whatever consensus criteria you want. The point is that a diagnosis based on self-reported symptoms isn't going to be as accurate as one based on some objective measure. At the end of the day, diagnosing anything - even those conditions for which there are objective measures - is a probabilistic endeavor. And being a probabilistic endeavor, it is prone to false positives and false negatives. I'd wager that conditions diagnosed based on self-reported symptoms have a much higher rate of false positives (and maybe negatives) than those for which there are objective measures.

 

[roller]

"No one was able to tell me what to do. I was in so much pain," Elise says, adding that she was bedbound for months prior to coming to Mayo Clinic.

"Just the fact that there was someone saying these magic words, 'I think we can help you.' It was reassuring."

"But the problem is the motor program to run those things has been disrupted for some reason," he says.
Often there's some kind of traumatic event, but at least half the time people aren't able to pinpoint anything. They just lose the ability to move normally."

In Elise's case, the combination of nervous system infections and a psychologically traumatic response to her illness set the stage for her symptoms to surface, Dr. Staab says.

The BeST Program — one of only a handful like it in the country — works by reshaping the abnormal behavioral patterns.
Mayo Clinic's Behavioral Shaping Therapy, or BeST, Program ... An intensive, five-day course involving physical therapy, occupational therapy, psychiatry and speech therapy, the program restored Elise's ability to walk and talk.

Elise's medical nightmare started with a case of shingles. A cascade of maladies followed, including viral encephalitis, extreme fatigue, cognition problems, gait issues, facial paralysis and speech difficulty. The San Francisco Bay-Area resident no longer could exercise, was forced to stop working and rarely left her apartment.

In Elise's case, the combination of nervous system infections and a psychologically traumatic response to her illness set the stage for her symptoms to surface, Dr. Staab says.

"What the physical therapists and speech therapists are doing is teaching patients about those abnormal behaviors and how to reset them back to more natural ones that they keep practicing over and over again until they break the pattern."

Functional neurologic disorder, sometimes called conversion disorder, affects up to one-third of individuals who seek medical treatment for neurological symptoms

In functional neurologic disorders, the body's underlying equipment, such as the brain, nervous system and muscles, is structurally and anatomically normal, explains Jeffrey Thompson, M.D., a physiatrist in Mayo Clinic's Department of Physical Medicine and Rehabilitation.

from nanonugs link above
https://sharing.mayoclinic.org/2018...-a-mysterious-illness-turn-despair-into-hope/

 

[nanonug]

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

Someone is diagnosed with condition A, for which there are no objective tests and no treatment.

Subsequently, the same person is diagnosed with condition B, is treated for condition B, and goes into remission for condition B. Miraculously, condition A also goes into remission at the same time as condition B.

What are the odds that the person never had condition A and the problem was condition B all along?

I understand that Jen (presumably) met the guidelines for ME/CFS and in this sense you are correct. But given that no one knows the etiology of SEID/CFS/ME, isn't it possible that such guidelines may be a little too "liberal" and capable of "catching" more than what they should?

 

[Inara]

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.

What Mayo thinks isn't a proof that something is reality.

Btw, people that have a diagnosis of "conversion disorder" will have real symptoms. I don't question or belittle that - I hope that's not understood like that.

 

[Rufous McKinney]

What are the odds that the person never had condition A and the problem was condition B all along?

or: Condition B is also: a symptom? It was caused by: something.

what if: we still have our basic theory:

some genetic predispositions X infectious event X subsequent factor Z (severe stressors, organo-toxins, EMF, mold) = weakened collagen processes. Then: many of us can be plotted on some continuum for varying extremes of these variables.

Here: genetic predispositions may include 1) heteroz for EDH; 2) the spinal issues are likely genetic; 3) known other genetic deficiencies here (Yin deficient).

immune system compromised prior to Year 1. Now living: Year 65.99

 

[Wayne]

I would like advice on what I could do with my diet that may help this deterioration

I received a Lyme diagnosis many years ago, and soon discovered Stephen Buhner's protocol, with its emphasis on collagen. So I started consuming generous amounts of bone broth, which felt so supportive that I've continued it for many years now.

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.

It can be a result of a Lyme, or other Lyme co-infection. Though a number of co-infections are known, many more are believed to exist that have yet to be identified. So I suspect any kind of tick-borne infection (TBI) can cause collagen/ligament damage.

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

@gm286 -- Could you provide a link to the forum? -- Thanks!

 

[Rufous McKinney]

soon discovered Stephen Buhner's protocol, with its emphasis on collagen.

the movie: the Graduate (dustin hoffman) ( "Plastics")

The movie: the Graduate 2020 ("Collagen")

 

[gm286]

@Wayne I’ll gladly look at the peptide and your write up, thank you!

Do links to closed Facebook groups work? How would I go about it? I could always sort of take a screen caption?...

 

[rel8ted]

Someone is diagnosed with condition A, for which there are no objective tests and no treatment.

Subsequently, the same person is diagnosed with condition B, is treated for condition B, and goes into remission for condition B. Miraculously, condition A also goes into remission at the same time as condition B.

What are the odds that the person never had condition A and the problem was condition B all along?

I understand that Jen (presumably) met the guidelines for ME/CFS and in this sense you are correct. But given that no one knows the etiology of SEID/CFS/ME, isn't it possible that such guidelines may be a little too "liberal" and capable of "catching" more than what they should?

Jen’s doctors diagnosed Jen and they made their professional, informed decisions. You, nor I, nor anyone in internet land have the ability to say with any authority that she was misdiagnosed.

You are entitled to your opinion. That does not make it correct. You are now suggesting the ME criteria are too broad and I whole heartedly disagree. We, as patients have all been through enough with this disease. We really don’t need to turn into a group of elitists and say someone no longer belongs in the “ME club” because a surgery or treatment relieved their symptoms.

 

[nanonug]

or: Condition B is also: a symptom? It was caused by: something.

It's certainly a possibility, particularly genetic predisposition to certain metabolic behaviors that could be identified as "SEID/ME/CFS."

 

[Rufous McKinney]

soon discovered Stephen Buhner's protocol, with its emphasis on collagen.

I just checked out Buhner's web page.

Item 5 said: implement the supplemental collagen protocols.

I could not find them. Can you clarify this? @Wayne ?

 

[junkcrap50]

@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).

could you upload the PDF as an attachment to a post in this thread? I dont have facebook so I can't read anything about the Cusack Protocol.

 

[nanonug]

Jen’s doctors diagnosed Jen and they made their professional, informed decisions. You, nor I, nor anyone in internet land have the ability to say with any authority that she was misdiagnosed.

No doubt about that. Of course, the same also applies to the doctor who diagnosed her with conversion disorder.

You are now suggesting the ME criteria are too broad and I whole heartedly disagree.

Are you implying that the current criteria catches all cases of SEID/ME/CFS with 100% certainty, with no false positives or even negatives?

We really don’t need to turn into a group of elitists and say someone no longer belongs in the “ME club” because a surgery or treatment relieved their symptoms.

Well, it's a bit more than "relieved their symptoms", it's "remission!" Remission is a big deal considering that most diseases/conditions can, at best, be only managed.

 

[frozenborderline]

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.

And the Mayo Clinic also think that ME/CFs is treatable by GET and CBT. Do you agree with them about that ?

 

[frozenborderline]

No doubt about that. Of course, the same also applies to the doctor who diagnosed her with conversion disorder

However, I am suggesting that Jen was correctly diagnosed with ME, not simply Bc an ME specialist diagnosed her, but because she met all the criteria, and also had labwork consistent with that. Such as enterovirus , various herpesviruses, pdh dysfunction, etc.

 

[frozenborderline]

I understand that Jen (presumably) met the guidelines for ME/CFS and in this sense you are correct. But given that no one knows the etiology of SEID/CFS/ME, isn't it possible that such guidelines may be a little too "liberal" and capable of "catching" more than what they should

You would be one of the only people to suggest that ICC guidelines are too liberal. They are pretty strict. The only stricter criteria are probably Ramsay’s. If Jen didn’t have ME, very few people do.

 

[nanonug]

And the Mayo Clinic also think that ME/CFs is treatable by GET and CBT. Do you agree with them about that?

No, of course I don't. But being wrong on one thing doesn't mean Mayo is wrong on everything.

 

[frozenborderline]

No, of course I don't. But being wrong on one thing doesn't mean Mayo is wrong on everything.

But if their blind spot includes the belief that ME/CFS is psychosomatic, one might be inclined to question their take on the question of psychosomatic illnesses, especially when the very existence of psychosomatic illnesses is unfalsifiable.

 

[nanonug]

You would be one of the only people to suggest that ICC guidelines are too liberal. They are pretty strict.

Just like I asked before, are you implying that ICC criteria lead to exactly a zero rate of false positives?

If Jen didn’t have ME, very few people do.

OK, let me put it this way: I don't place much trust on diagnoses that rely solely on self-reported symptomatology. As of now, this includes pretty much all of Psychiatry along with any other functional disorder such as IBS, for example. But at least in the case of Psychiatry there are drugs one may take that, depending on how they affect the patient, generate a kind of self-referential "certainty." (Note the quotes.)

Until (if ever) SEID/CFS/ME becomes a disease with a specific etiology and for which there are objective, properly validated tests, I reserve the right to assign a lower probability of accuracy to such diagnoses.

I have been formally diagnosed with CFS by a doctor I respected (and still do.) But in no circumstance did I ever considered him to be infallible. I don't consider it impossible that I was misdiagnosed. (Fun fact: I have absolutely no SEID/CFS/ME symptoms if I stop eating altogether; but this "treatment" is kind of self-defeating.)

To assert, or imply, that there is essentially zero probably of misdiagnosis in Jen's case - something that doesn't exist for any other condition - doesn't stand scrutiny not even in theoretical terms.

 

[nanonug]

But if their blind spot includes the belief that ME/CFS is psychosomatic, one might be inclined to question their take on the question of psychosomatic illnesses, especially when the very existence of psychosomatic illnesses is unfalsifiable.

It's a fair conclusion. But let me tell you a story:

My current Psychiatrist convinced me (but not without protestation) to see a Psychologist for my complain of CFS. Basically, she wanted to cover all bases and leave no stone unturned from a mental health point of view. It ended up being a lady with a PhD in Psychology. After I explained my situation, she told me that she thinks CFS is organic and that she wouldn't be able to help me in that respect. She offered, however, to help me emotionally cope with the condition if necessary. After some 20 minutes or so of back-and-forth, she also concluded that I had proper coping mechanisms and that further visits would be a waste of time and money.

Moral of the story: not everyone that works in the field of mental health is a moron.

Given this, I do have a hard time believing every single Psychiatrist and Neurologist that works at Mayo is a moron.