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

[Wayne]

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

But a shockingly high number of them certainly appear to be. Especially if you include doctors who get a visit from a pharmaceutical rep one day, and start prescribing all kinds of psychiatric drugs the next. It seems they then begin to think that within just a few minutes of visiting with a patient, they're now competent enough to discern whether to prescribe extremely powerful and dangerous drugs with very questionable value.

This wasn't always the case. From my understanding, for a long time, most doctors never ventured into the "mental health" field, leaving it to the field of Psychiatry. But with the advent of Prozac and other drugs starting around the 1980's, that all changed. Streams of salespeople started to visit doctors to convince them that they could expertly do what they were not trained to do.

If you look at the number of people who regularly take antidepressents, anti-anxiety medications, sleep meds, etc., you can see that we live in a culture that is now inundated with the nonsensical thinking that drugs of these sorts--with all kinds of devastating "side effects"--are the first thing to turn to, instead of being thought of as a last resort.

 

[Inara]

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.

I had to think about this. Of course, this is one of the first thoughts I had when reading about recovery/remission stories. I personally came to my conclusion this is too simple, and there is more to this: first, due to anecdotes; second, biochemistry (signaling pathways alone are so complex and varied that I find it absolutely possible that two different pathways lead to the same outcome; in fact, the body works with a lot of redundancy to make it functional as long as possible. Indeed, it is already known in other diseases that different pathomechanisms can lead to the same symptom - and it is not so surprising after all).

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

That depends?

I think false negatives are always possible. Re. false positives:

1) If one assumes a "true" ME exists, with one pathomechanism, like in Diabetes type 1 (or others), then experience shows false positives, i.e. misdiagnoses.

2) If one assumes that ME is an "endstage" of different pathomechanisms, like cancer for instance (there are many different cancer types with different treatment plans, and although the biochemical principle behind the development of cancer is similar, there are differences), then the incidence of false positives will be low (assuming PEM is included like in CCC/ICC).

The thing is: We don't know. Research is needed to find this out as a fact. Until then if we choose 1 or 2 is a matter of opinion.

When I was newly diagnozed I thought the first point is correct ("ME is a diagnosis of exclusion" - but so many things weren't excluded), until I learnt about others' stories that found out to have a certain cause (e.g. exocrine pancreatic insufficiency, rare autoimmune or other diseases, maybe CCI) - those people had ICC/CCC-ME-diagnoses, i.e. including PEM. I then continued my search in order to find out if I was misdiagnosed. Two very rare mutations were found, that may (or may not) explain my ME typical symptoms. I was wondering if I still had ME with this finding. And I think yes. For one, because one of these mutations/gene is being researched right now - so who knows?

I think we shouldn't dismiss those people who found causes for their ME as misdiagnosed - because this contains valuable information about the nature of ME. If there exists a "true" ME, these "misdiagnoses" help with narrowing down and finding it. If point 2 is correct, these stories may help identifying subgroups. There really should be research about this.

 

[Inara]

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

Only that ME exists and conversion disorder does not. I think that's a major difference. Also this is important to keep in mind:

especially when the very existence of psychosomatic illnesses is unfalsifiable.

which makes it an unscientific hypothesis (according to Popper).

She offered, however, to help me emotionally cope with the condition if necessary

That should be natural and doesn't proof competence. As in every field you find good and not so good people. My experience is, though, in line with @Wayne, in the medical and mental health field, there is a 95% chance of finding a bad apple, and this will also apply to Mayo.

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

There are no diagnostic criteria (objective and subjective) that lead to 0% false positives/negatives. There is no such thing as 100% / 0% in real life. Nobody suggests here that ME criteria are infallable - especially also because every diagnosis depends on the clinician, too. We all know it's a problem not to have biomarker; therefore the call for more money for research. Of course there is uncertainty in a ME diagnosis. But if an expert ME clinician made the diagnosis, your lab results fit scientific findings and you find nothing else that may explain the ME symptoms - taking into account that ME-PEM isn't a feature of so many diseases, if at all - then this may reduce the doubt significantly. And having ME doesn't mean there can't be other diseases as well - to the contrary. Most pwME experience co-morbidities. E.g. Parkinson and ME don't exclude each other - although in research you want "pure" ME cases without co-morbidities.

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

Who knows? I share @debored13's opinion here: Selling CBT/GET as treatment and cure is quackery, and Mayo is totally resistant to accepting that; additionally, they seem to be using Oxford/Fukuda criteria? In this respect Mayo - including its Neurologists and Psychiatrists - is a moron.
http://www.virology.ws/2018/08/20/trial-by-error-more-mayo-please/

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

Which is not backed-up by scientific findings.

 

[lafarfelue]

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.

I haven't read this entire thread yet, but thanks for putting this into text, @Murph. These are my feelings on this issue also. It's such a shame to see gatekeeping and what amounts to a kind of 'illness Olympics' within our chronic illness community.

 

[Cheesus]

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?

Condition A was likely caused by condition B.

It is normal for one condition to cause another. CCI, for example, can be caused by Ehlers Danlos. Does that mean anyone with Ehlers Danlos who develops CCI does not really have CCI? Of course not. It is a consequence of their Ehlers Danlos, but it is also an independent diagnosis with its own symptoms.

In Jen's case, CCI potentially caused her ME. That does not mean she did not have ME.

 

[Celandine]

The thing is, Jen never had any ME symptoms until she came down with a serious viral illness. She had no symptoms of CCI or ME. The viral illness was the trigger for her ME and possibly a factor in her CCI. Or, she had asymptomatic CCI her whole life and the viral illness triggered it to become symptomatic in a way that we would call ME. In either circumstance, she had/has ME as currently defined.

I feel some confusion as to why there's such a resistance to accepting mechanical explanations or contributors but much less to viral/blood-based explanations. At this point there's a good amount of evidence mounting for both. One may be a trigger and the other the predisposing reason why that trigger caused an individual to get ME. I see no conflict there. And by mechanical I don't just mean CCI.

 

[Wayne]

I feel some confusion as to why there's such a resistance to accepting mechanical explanations or contributors but much less to viral/blood-based explanations. At this point there's a good amount of evidence mounting for both.

@Celandine -- Structural (or mechanical) issues have been my primary working hypothesis for my own ME/CFS issues for many years now. Which is why I've explored so many "alternative" ways to address them, like AtlasPROfilax, self-acupuncture, and much more. -- Here's a brief description of part of my hypothesis about a subset of people with ME/CFS (most of which is derived from my own experience):

I believe a neck injury/whiplash or other similar injury (including viral or bacterial) can shift the atlas enough so that the ligaments become weakened, and/or the cranial nerves exiting the brainstem become "pinched" (and compromised). Of the 12 cranial nerves, the vagus nerve is the longest, and meanders all the way through the gut and ends in the colon. It's critical for the healthy functioning of many organs and glands along the way as well.

So normal functioning of the gut--where a very large percentage of the immune system resides--is dependent on a healthy vagus nerve, giving energy to the entire GI tract. If the vagus nerve is struggling, then digestion can become poor, nutritional status can be impaired (no matter how well we eat), and the immune system becomes compromised (often as a result of leaky gut syndrome). This can lead to opportunistic infections that would not otherwise occur. AND, I've come to believe, autoimmune disorders.

I've thought about this much more, but this is the brief version of my own situation. I think this scenario is likely the case for other people with ME/CFS as well. Which leads to the question, "Could effectively treating neck injuries help correct various kinds of immune and/or autoimmune disorders which lead to ME/CFS?" -- I think the answer is yes. Which is why I agree with your point @Celandine: "At this point there's a good amount of evidence mounting for both." -- I find it very interesting that JenB's vital titers all seem to have come down after her surgery, implying corrected immune function.

 

[Rufous McKinney]

The thing is, Jen never had any
ME symptoms until she came down with a serious viral illness.

Just hypthesizing here........so hypothetically: the viral infection weakened her collagen processes, and the subsequent issues all developed from there. But it seems this hypothesis does not clearly explain: how can you be this fixed, after the 5 surgeries (or what have you). If her collagen processes are still impaired by the pos-viral condition, there is no evidence of that at the moment during her remission.

But if something is interacting stemming from the tissue being inflammed (lower brain stem, spinal cord)..that itself is: disrupting all these neurological and immunulogical processes. And messing up collagen processes. So by reducing that: squished tissue, reducing that compression, the tissue is less inflamed, its now sending out more correct messages. Other things likely shifted like: lymph, spinal fluid.

I've never injured my neck. (lucky me). But something is really inflammed back there: has been the case for decades.

 

[Rufous McKinney]

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

Wanted to add that earlier, an article on some ME genetics discussed three clusters of SNPs found in us.

One of those: dealt with the Inflammatory cytokines. And I should include the link, but gosh, where was that?,tired, sigh.

So: this is an arena where we may harbor genetic tendencies. So: maybe your ENTIRELY correct with this theory. Or at least: perhaps something genetically wrong with this particular arena: results in us responding badly to our first collision with-the virus, or other initiator. Who then cleverly: starts working their magic.

 

[Rufous McKinney]

an article on some ME genetics discussed three clusters of SNPs found in us.

@nanonug - Link to article on SNPs in MECFS, includes the Cytokine pathway......

https://www.frontiersin.org/articles/10.3389/fped.2019.00206/full

 

[Celandine]

I've thought about this much more, but this is the brief version of my own situation. I think this scenario is likely the case for other people with ME/CFS as well. Which leads to the question, "Could effectively treating neck injuries help correct various kinds of immune and/or autoimmune disorders which lead to ME/CFS?" -- I think the answer is yes. Which is why I agree with your point @Celandine: "At this point there's a good amount of evidence mounting for both." -- I find it very interesting that JenB's vital titers all seem to have come down after her surgery, implying corrected immune function.

@Wayne I'm also so intrigued by Jen's viral titer resolution. It seems to mean that, yes, there is viral involvement, but there needs to be another factor to kick you into ME. A blockage of brain fluids or brain pressure of any kind seems to be an excellent candidate. It creates a vicious cycle.

Also interesting what you say about the vagus nerve. My daughter's ME has never effected her gut. Her pain issues all seem to focus around her mid-spine and ribs. Plus unrelenting headache, of course. I picked up her diagnosis very quickly. She'd been having all kinds of symptoms, including PEM, but I couldn't piece it together. It was actually running across UNREST that made me realise it was probably ME. Daughter and I were actually watching it together, so quite a horrible emotional moment. I started her with a Perrin practitioner very early on. Just 6 months or so into the acute phase of her ME. She's only 16, so her body is still very resilient and undamaged by other things. I feel like that early mechanical work may be what stopped things from progressing further for her. Relieving pressure and keeping fluid moving. Of course, I can't be certain. I feel like the Perrin stuff would be less successful if you're older or have had the illness for many years. Plus it won't solve any significant structural issues, of course.

@ScottTriGuy posted a link to this super interesting lecture from Kenneth Liu who has found that venous stenting in the brain of EDS patients often relieves all of their ME-like symptoms--brain fog, fatigue etc. Turns out, he himself is not really sure why it works! It's long, but I thought very worth a watch. Another approach to a mechanical fix. At about 1:12 he also talks about brain lymphatics:

 

[Celandine]

But if something is interacting stemming from the tissue being inflammed (lower brain stem, spinal cord)..that itself is: disrupting all these neurological and immunulogical processes. And messing up collagen processes. So by reducing that: squished tissue, reducing that compression, the tissue is less inflamed, its now sending out more correct messages. Other things likely shifted like: lymph, spinal fluid.

@Rufous McKinney I think this makes a lot of sense. Jen has broken the cycle by removing the source of brain pressure.

 

[Wayne]

A blockage of brain fluids or brain pressure of any kind seems to be an excellent candidate. It creates a vicious cycle. ...... Also interesting what you say about the vagus nerve. My daughter's ME has never effected her gut. Her pain issues all seem to focus around her mid-spine and ribs. Plus unrelenting headache, of course.

I had very significant head pressure and headaches for many years, but have been able to get about 90% resolution of these in the past 3-4 years (after decades of chronic, daily headaches). A number of manipulative therapies to affect my structural issues were instrumental, but the non-manipulative modality that I think helped the most was regularly applying a combination of DMSO and Magnesium Oil to my neck and upper back. It really seemed to help relieve a lot of the pressure, I believe by increasing circulation, and reducing inflammation. My Orthostatic Intolerance noticeably improved as well.

I got this idea after learning that DMSO is routinely used in conventional medicine these days to quickly bring down pressure in the head that builds up rapidly after a closed head injury. Before discovering and using DMSO, many people would die from this rapid pressure buildup. So I figured if it's really good for that, why wouldn't it be good for my own head presure and headaches. And it was. -- Let me know if you'd like a few specifics on how I do the DMSO/Mag. Oil combination. -- As I look forward, I anticipate Self-Acupuncture, Gua Sha and Cupping becoming valuable modalities for me, and I would assume for most people who would use them for signicant neck and other structural issues. @brenda

 

[pattismith]

I got this idea after learning that DMSO is routinely used in conventional medicine these days to quickly bring down pressure in the head that builds up rapidly after a closed head injury. Before discovering and using DMSO, many people would die from this rapid pressure buildup. So I figured if it's really good for that, why wouldn't it be good for my own head pressure and headaches. And it was. -- Let me know if you'd like a few specifics on how I do the DMSO/Mag. Oil combination. --R]

I 'd like very much the few specifics to do your magic oil Wayne. intracranial pressure is one of my recurrent concern...

 

[Celandine]

@Wayne I think I've read some of your postings re: DMSO. Is this the stuff that can be very irritating to skin and also has a very strong (unpleasant) smell? I think I really wanted to give it a try but those two factors seemed like things that wouldn't go over too well with a teenage girl! Is it a symptomatic/temporary fix or does it provide more lasting relief? Oral magnesium increases daughter's headache. I've tried many times, thinking it was a coincidence, but it's the same each try. I've heard it's a vasaodilator, so that could be it. Maybe topical oil would be better.

 

[Wayne]

Is this the stuff that can be very irritating to skin and also has a very strong (unpleasant) smell?

Hi @Celandine -- Yes, that's it. The odor is actually from the same substance that gives garlic its pungent smell. Fortunately, the newer prducts are ultra-purified, and leave very little of this substance behind, eliminating almost all of the odor. [I linked to where I purchased a gallon of DMSO at the link below, which is a post I made on a Tinnitus forum]. You might want to take a quick look at this site to get a quick overview of TTTS: -- What is tonic tensor tympani syndrome?

Regarding irritation: Normally DMSO is diluted 2 parts DMSO to 1 part purified water. But the ratio doesn't negate the beneficial effects, you just might need to use it a little more often. The advantage however, is that's it would almost certainly be less irritating for many people (I don't have a problem at the 2:1 ratio). Another remedy for irritation is to apply some kind of soothing oil or cream on it afterwards, like coconut oil. If you look online, you'll see a number of cream products (expensive) that combine DMSO with it.

DMSO & Magnesium Oil for Tonic Tensor Tympani Syndrome (TTTS)

Below is a copy and paste of my original post at the above link, which gives a lot of the basics of using DMSO. Let me know if you have any questions after reading it.

I've used a combination of DMSO & Magnesium Oil for several years now, mostly applying it to any muscle or area of my body that was tender or painful. I believe using it around my ears when I started experiencing TTTS last year more than likely resulted in my experience with TTTS being relatively short lived. -- To explain:​

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DMSO has a number of remarkable healing qualities and characteristics, giving it some pretty amazing abilities to increase circulation and reduce inflammation (both almost vitally important for injured ears). It also has incredible ability to be a carrier for other substances, which works well for getting these substances deeper into the skin and the body.​

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I started using this combination on some lower back pain, and some neck pain as well. I got very good results from doing that, and also noticed a very curious thing. I would have some left over on my hands, and would rub the remanants over my eyelids (I'd read DMSO was good for the eyes, but didn't want to put it directly into my eyes).​

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Totally unexpectedly, my chronic eye twitching of several years duration went away after about 2-3 days. So when I started experiencing symptoms of TTTS, I figured putting some around my ears might calm down those involuntary twitches as well. And it did. Not as quickly as the eye twitches, but I don't think the TTTS persisted for more than a few weeks (was about a year ago). I've not had any fluttering or painful twitching since then.​

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I bought my DMSO on eBay at THIS LINK (1 gallon size is a much better deal than the 1 pint size for $12)​

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I got THIS BRAND ($12) of Magnesium Flakes (to make Magnesium Oil)​

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Notes:​

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DMSO needs to be diluted before using. Most call for a dilution of 2 parts DMSO to 1 part purified water, though you can dilute to whatever strength you desire. After mixing the two, the dilution mixture will actually create some kind of chemical reaction, and will warm up for a few minutes.​

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Magnesium Oil is made by filling any glass container half full with Magnesium Flakes. Then fill to the top with purified water. Most of it will dissolve in a short while, but may take 24 hours to completely dissolve. The resulting mixture is called Magnesium Oil, because it has an oily texture (even though it really isn't an oil).​

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I put both mixtures in dropper bottles, and mix a dropperful of each in my hands before applying.​

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Things to be aware of:​

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1) Both of these substances have the potential to irritate the skin, making it feel kind of prickly. If that happens, you can put some kind of soothing oil over the skin, like coconut oil. But a simpler solution would be to just dilute it more, so that the irritation doesn't set in.​

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2) DMSO opens up the skin pores, and is great for acting as a carrier for other substances. If those other substances are good--like Magnesium Oil, or other essential oils, etc.--then that's a very nice characteristic to take advantage of. However, care needs to be taken (for about 20 minutes or so), not to expose that skin to detrimental substances, such as chlorine in water, toxic cleaners, or toxic anything else.​

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3) The Magnesium Oil from the flakes is technically Magnesium Chloride. Some say this is the best kind of magnesium for your body. Others have said that if a person is deficient in magnesium, applying Magnesium Chloride transdermally is the fastest way to restore that deficiency. -- This can be ideal if a person is dealing with tinnitus, and wants to get the calming effects of magnesium started as quickly as possible.​

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4) The Magnesium Chloride is easily and readily converted to Hydrochloric Acid. So if you have weak digestion, putting small amounts of this in your food--or even applying it transdermally on your stomach--just might improve your digestion.​

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5) Though many people have not heard of DMSO, and many others know only a little about it, it's actually an incredibly versatile natural substance (comes from trees), and has an unusually high safety profile. It's often used as the first line of defense against run-away inflammation in case of closed head injury. It can bring pressure in the head down dramatically in under five minutes, and has been credited with saving many people's lives.​

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6) DMSO is often used as a natural solvent for people who suffer a stroke. Though it's remarkably effective, very expensive patented pharmaceutical solvents have for the most part replaced them in hospital settings. -- It's also been reported to be able to dissolve cataracts.​

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There are many other things that could be shared about this remarkable substance. I won't elaborate any more now, as this post is about how there's a good chance it could help many with TTTS. BTW, it appears to have the potential for improving tinnitus as well. -- Dimethyl sulfoxide [DMSO] therapy in subjective tinnitus of unknown origin.​

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P.S. Even if you never use DMSO + Magnesium Oil for TTTS, I think it's a good idea for this combination to be in every medicine cabinet. It really is remarkable what it can do for all kinds of aches. pains and swelling, and can dramatically accelerate healing from all types of injures (including broken bones). -- It's even been reported to heal nerves and restore limb movement in some cases of paralysis.​

 

[sb4]

Just as a potential warning for DMSO. Every time I have used it, or products with it I feel bad, just odd, out of it, feels not nice at all. Some other people have problems with this but it's very individual, some are great with it.

 

[pattismith]

thank you @Wayne and @sb4 , it's nice to have good and bad experiments with DMSO, it's worth a try.

@sb4 , I suppose you tried with several dosages?

 

[sb4]

@pattismith Can't remember the dosages but I bought DMSO and magnesium oil and use the together like Wayne did and I got those wierd symptoms. I later used diferent products with DMSO added and got those same unique symptoms.

 

[ebethc]

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.

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...

agreed.... even if I had the money/good insurance, I don't have a caretaker. plus, what if come out the other side a paraplegic?!?

Maybe this is: our cure.
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).

yes.... maybe there's a neurological tx aside from surgery that can help.... cranial sacral therapy has always helped, but I haven't been able to afford it, but there's a cradle on AMZN that's about $40 that I might try... my chiro was a PT before becoming a chiro, so I can ask her about the manual traction thingy... I'm thinking of what I CAN try, based on this news.. It might at least confirm some neuro basis for my particular flavor of CFS.

2nd - I read about high fat diets for multiple sclerosis on PUBMED early this year (high, healthy fat intake is good for your neuro system, ppl w MS and epilepsy have benefited) and have played around w macros and types of dietary fat this year... the results are promising, and I recommend experimenting w higher fat diets... I started w the recommendation of the study on PUBMED, which was ~70% fat, and that was way too high for me so I've come down from that.. Plus, saturated fat is a little hard for me to digest, so I've been varying the types of fat... You get he idea... It's worth trying

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.

y, I had scoliosis as a child and terrible joint pain and stiffness.. It's like the opposite of EDS!