Jen Brea: My ME is in remission

[rvallee]

CCI is not controversial. It is standard neurology. I looked after people with CCI. All medical students know about it. Neurosurgeons throughout the world deal with it.

Then it's the procedure? I remember in Jeff's post he mentioned that lots of people were facing a brick wall.

Damn you flaky memory.

 

[rvallee]

I was wondering the same thing earlier this morning. When I watched 'Unrest' when it aired on PBS last year I remember thinking at the time that my ME was definitely not the same one that Jen had.

Still the same underlying problem: medical denial. Jen and Jeff had to doggedly pursue this angle that not one medical professional identified. Under standard guidelines they would never have found their way to this treatment, in fact they actively discourage and make it harder on purpose.

The underlying problem is the confusion caused by CFS and the wastebasket of MUS that discourages not only proper diagnostic but has justified the complete lack of effort in implementing specialist services that can deal with millions of sick people who are systematically discriminated out of health care just because we are too complex to deal with. Well, tough shit, medicine isn't supposed to be easy so suck it up, Buttercups.

There is zero doubt that a significant % of ME patients will have a different explanation with different subsets that are superficially similar but can be differentiated with genuine expertise. It really should not be a surprize but it's still the same underlying rotten foundation that makes it impossible for us to have appropriate medical care.

The biggest consequence has been the denial of provisioning specialist clinical services, allowing for expertise and a reliable knowledge base to build up, feeding into research and at least recognizing the severe disability millions are currently facing without any support whatsoever. There have been numerous insistent warnings that this would be the outcome, which was quite frankly predictable anyway.

That there are differences is expected, past decisions guaranteed it.

 

[Jonathan Edwards]

Then it's the procedure?

I suspect it is the use of the procedure for cases that do not have symptoms indicated by the neuroanatomy or accepted clinical picture.

 

[DokaGirl]

What is it each and every one of us has, really? Early on, my search for underlying causes, treatments and a cure led to various explanations - all of which seemed plausible. I could tick many of the boxes for most. But treatment never panned out, so I moved onto the next possibility. I finally learned the body can only react in so many ways, and more or less put aside this costly searching.

This thread really brings that searching home to me again. What is it really each and every one of us has?

Taken as entire organizations, excluding those intelligent, caring individuals of these structures who are helping to search, governments and medicine find it much more convenient and cost saving to label people with MUS, than
search for the real cause.

 

[ME/CFS Skeptic]

Although I bow to your vastly superior medical knowledge Jonathan, over the last couple of weeks I've watched a few presentations by neurosurgeons with expertise in Chiari and CCI. They seem to collectively believe that a whole range of symptoms that are commonly seen in ME - including headaches, balance issues, audio and visual disturbances, brain fog, exercise intolerance, gastro-intestinal issues, sleep disruptions, tachycardia, autonomic disruption - are also frequently seen in CCI cases, where they can be directly attributed to the damage done to the brainstem by the excessive movement of hypermobile joints.

Could you share some of the videos and papers about CCI that suggests this? Many thanks in advance!

 

[junkcrap50]

It's a pity she didn't have Ron Davis' blood/serum test/s both earlier on and now for comparison.

I agree. Maybe some ME/CFS patients who are already have diagnosed CCI and are planning to have the surgery should contact Davis and submit blood/serum samples. If they have a dramatic remission like Jen, it may be worth doing a retroanalysis of pre- and post-surgery case study of those patients. Have Davis run their samples on the nanoneedle, metabolomics, miRNA, Seahorse, etc.

 

[DokaGirl]

@Sly Saint and @TigerLilea

Yes, what will happen to Unrest, which did much for awareness, and credibility. As well, it's used as CME in the US.

I think the info that there is a potential link to brain stem issues, and ME, as brought out in the CCC could help somewhat.

I dread to see what is made of this by some.

 

[mango]

Although I bow to your vastly superior medical knowledge Jonathan, over the last couple of weeks I've watched a few presentations by neurosurgeons with expertise in Chiari and CCI. They seem to collectively believe that a whole range of symptoms that are commonly seen in ME - including headaches, balance issues, audio and visual disturbances, brain fog, exercise intolerance, gastro-intestinal issues, sleep disruptions, tachycardia, autonomic disruption - are also frequently seen in CCI cases, where they can be directly attributed to the damage done to the brainstem by the excessive movement of hypermobile joints.

Could you share some of the videos and papers about CCI that suggests this? Many thanks in advance!

I, too, would love to know more about this (but I'm unable to watch videos). For example, is there anything in the CCI and chiari scientific literature that suggests that PEM and immunological symptoms -- those that are characteristic of ME, in particular -- are common? I find it very confusing when in discussions elsewhere some people are claiming that there is such a significant symptom overlap that it can be difficult to tell them apart from ME? (Just to be super clear: my question has nothing to do with Jen or Jeff, but what is known about the diagnoses in general.)

Is there, by any chance, a table/spreadsheet with all ME, CCI and chiari symptoms listed for comparison?

 

[JES]

I think, for the sake of honesty, it would have to alter how it is used.

Why? Jen's diagnosis of ME/CFS was made on valid grounds and she had all the typical symptoms, so everything described in Unrest is still more or less correct. It has always been known that ME/CFS is a chronic condition from which around 5% or less manage to recover. Now it seem there is one further path to recovery for a subset, which is great news, but it doesn't fundamentally turn things upside down.

 

[Alvin]

I would have thought that anaesthetics are more likely to trash vitamin B12 and make things worse. The nitrous oxide used in many anaesthetics destroys/oxidises the B12 in the body and makes it useless.

https://www.b12-vitamin.com/anesthesia/

Perhaps its a good thing i take B12 daily since i have a proven deficiency

seems the forbidden question, sort of
am wondering: benzos, painkillers

so, meds before, and
meds related to surgery: before and during the 12 months period, till reporting point

I have been surprised by some of the things people have found affects their ME from a gastro drug to antivirals to DHA. We really need to know more about this disease mechanism.

And further highlights the foolishness and unethical nature of MUS guidelines.

Under this model neither Jen nor Jeff would ever had had that surgery. They would have had lifelong severe chronic disability with no hope of improvement, all while being told it's their fault all along. Those guidelines assume there is no such possibility and that misdiagnosis is harmless. This is demonstrably false and completely unacceptable.

And with the few who have ME on their death certificate, it shows that either ME can be fatal, which should change things, or that misdiagnosis as ME under MUS guidelines is potentially fatal, which is completely immoral.

The presumption of harmlessness from psychosocial guidelines has been shattered. Not that it was ever credible but evidence is mounting of how dangerous and misinformed they are.

Very true. The problem is the scientific community has not learned that unknown etiology does not mean psychosomatic by default. Its a Freud remnant that they are determined to hold onto no matter how untenable.

When I visited the sleep clinic and tried to explain that I feel exhausted but not sleepy it was like hitting a divide by zero error. I may as well have been levitating something with my mind.

Sorry I don't follow your textbook understanding of fatigue, whatever is meant by that by sleep professionals. Nevertheless here I am.

Indeed, i had this same issue. I still have trouble explaining it in a way doctors or non doctors will understand.

Pinches self

Nope, I'm definitely possible, doc.

I think many would rather think your in the matrix then that you exist.

When more is learned about ME, we will be able to more confidently look back and see what research pointing to underlying causes was willfully ignored for decades. Perhaps this might include the brain stem hypoperfusion findings from 1995. And, who knows what other researchers may have been onto something very important for ME, but their work did not gain traction, or continued funding.

Very true.
I have long been fascinated by the concept of hindsight and what we can learn about it to make better predictions. Its a complicated subject when you dig into it, i have spent a lot of time thinking and experimenting on it back when i had the cognitive capacity and came up with some conclusions but cognitive dysfunction got in the way.
In many cases people came to conclusions by intuition/gut feelings and confirmation bias. Add in hubris and convenient fits the facts but its wrong if you dig deeply enough and many theories are just bunk until the incontrovertible comes along. One can even look at politics by this lens.
I won't type a novel but when we have a disease mechanism thats robust and proven looking back will be very interesting.
I was thinking last week of starting a thread about something somewhat parallel but with this going on i will wait (assuming i don't forget in a while to do it).

Still the same underlying problem: medical denial. Jen and Jeff had to doggedly pursue this angle that not one medical professional identified. Under standard guidelines they would never have found their way to this treatment, in fact they actively discourage and make it harder on purpose.

The underlying problem is the confusion caused by CFS and the wastebasket of MUS that discourages not only proper diagnostic but has justified the complete lack of effort in implementing specialist services that can deal with millions of sick people who are systematically discriminated out of health care just because we are too complex to deal with. Well, tough shit, medicine isn't supposed to be easy so suck it up, Buttercups.

There is zero doubt that a significant % of ME patients will have a different explanation with different subsets that are superficially similar but can be differentiated with genuine expertise. It really should not be a surprize but it's still the same underlying rotten foundation that makes it impossible for us to have appropriate medical care.

The biggest consequence has been the denial of provisioning specialist clinical services, allowing for expertise and a reliable knowledge base to build up, feeding into research and at least recognizing the severe disability millions are currently facing without any support whatsoever. There have been numerous insistent warnings that this would be the outcome, which was quite frankly predictable anyway.

That there are differences is expected, past decisions guaranteed it.

Most doctors mean well but the culture is descended from one that was rife with fraud and poorly tested conclusions. From fat causing heat disease to the wonders of fish oil to the replication crisis they relied on conclusions that were just not robust not to mention medical fraud that slipped through the cracks.
Someone once said half of what you learn in medical school will later be proven wrong. It may seem nuts that this could be true but so far it very much is. And once something is ingrained its very hard to change. I still deal with doctors who preach the low fat diet and 30 year old heart disease treatments that are long debunked.
All that said we need a diagnostic test to weed out ME form other misdiagnosed diseases. A disease mechanism would of course be gravy.

Why? Jen's diagnosis of ME/CFS was made on valid grounds and she had all the typical symptoms, so everything described in Unrest is still more or less correct. It has always been known that ME/CFS is a chronic condition from which around 5% or less manage to recover. Now it seem there is one further path to recovery for a subset, which is great news, but it doesn't fundamentally turn things upside down.

It has to be navigated correctly, people like one liners and easy answers, the PACErs saying well the whole film is crap because she didn't have ME hence PACE is right will gain loads of traction if we are not ready for it and we don't navigate this keeping in mind it will be used against us.

I agree. Maybe some ME/CFS patients who are already have diagnosed CCI and are planning to have the surgery should contact Davis and submit blood/serum samples. If they have a dramatic remission like Jen, it may be worth doing a retroanalysis of pre- and post-surgery case study of those patients. Have Davis run their samples on the nanoneedle, metabolomics, miRNA, Seahorse, etc.

This is ingenious. How can we make this happen?

 

[JES]

I could be wrong but I'm not sure the PACErs will engage in this argument or with her story at all. Some lower profile Twitter trolls will for sure and maybe even some of the Norwegian LP gang. But the PACErs tend to have very carefully thought out media strategies; as psychologists they seem very good at reading and manipulating the discussion into the desired direction and also at avoiding common pitfalls.

The claim that Jen had no real ME/CFS has several pitfalls, which are quite easily exposed. The first and most obvious point is that ME/CFS is a diagnosis of symptoms, not based on any diagnostic test, so anyone who fulfills the given criteria can be diagnosed with ME/CFS. The second pitfall is that by saying she had no real ME/CFS, they are then implying that the diagnosis and treatment of CCI is "valid" for potentially a bunch of patients with ME/CFS like symptoms, which I'm not sure they are willing to conclude.

 

[Alvin]

I could be wrong but I'm not sure the PACErs will engage in this argument or with her story at all. Some lower profile Twitter trolls will for sure and maybe even some of the Norwegian LP gang. But the PACErs tend to have very carefully thought out media strategies; as psychologists they seem very good at reading and manipulating the discussion into the desired direction and also at avoiding common pitfalls.

I am very sure they will exploit it. Thats why we need to be prepared.
As for being genius psychologists that they are not, they employ lies and easy answers. Exactly what politicians are doing today. Even the success rates are similar. Its a strategy of desperation and works until the tide turns.

The claim that Jen had no real ME/CFS has several pitfalls, which are quite easily exposed. The first and most obvious point is that ME/CFS is a diagnosis of symptoms, not based on any diagnostic test, so anyone who fulfills the given criteria can be diagnosed with ME/CFS. The second pitfall is that by saying she had no real ME/CFS, they are then implying that the diagnosis and treatment of CCI is "valid", which I'm not sure they are willing to do.

The public does not respond well to nuance. They expect and respond to aphorisms and easy answers.

 

[JenB]

Hi! I'm so sorry but I am spread a little thin across so many different platforms trying to answer as many questions as possible. It was really helpful to read this thread in part because I hope to answer more questions in future Medium posts. (There is so much to unpack!)

I just wanted to share @Jeff_w's recent interview with Mattie, a member of Phoenix Rising. He had surgery three months ago and while he isn't in remission, he has found significant improvement in his symptoms. He lives in the Netherlands and had his surgery in Spain: https://www.mechanicalbasis.org/interviews.html On PR, of 24 respondents who have had cervical imaging, 17 have been diagnosed with CCI. Whether we call this a mechanism or a misdiagnosis, that is significant.

I did want to answer one question re: costs. These surgeries are very, very expensive and patients in Europe do have to pay out of pocket. In the US, they are generally covered by insurance. In my case, I have very good health insurance via Princeton University and didn't even have to pay a deductible. So five surgeries in total (including my thyroid cancer surgery) and almost no healthcare costs. That is not the situation of the average American patient. But if you do have private health insurance, these surgeries are possible.

And lastly, thank you, everyone, for your well wishes. It was actually quite scary for me to come out with this news, and so I am just really grateful for how supportive and generous everyone has been!

 

[Jeff_w]

I had a complete recovery from severe ME, following my CCI surgery.

The biggest barrier I faced to getting my CCI diagnosis, and thus surgery, was doctors.

Still the same underlying problem: medical denial. Jen and Jeff had to doggedly pursue this angle that not one medical professional identified. Under standard guidelines they would never have found their way to this treatment, in fact they actively discourage and make it harder on purpose.

Precisely.

I was actively discouraged, told by many doctors that I couldn't possibly have CCI, or even if I did have it, CCI couldn't possibly cause POTS, ad nauseum. I continued researching, found a specialist neurosurgeon, and got my life back.

In addition to myself and Jen, there's a third ME patient (and a 4th) to have undergone the same fusion surgery. Jen mentioned this above, as well. I interviewed the third ME patient, Mattie.

Here's the interview.

You'll see that he's experiencing significant improvements in his ME.

 

[Alvin]

Hi! I'm so sorry but I am spread a little thin across so many different platforms trying to answer as many questions as possible. It was really helpful to read this thread in part because I hope to answer more questions in future Medium posts. (There is so much to unpack!)

Its very good to hear from you Jen
And @Jeff_w too

 

[mariovitali]

I wonder what the nanoneedle test of Ron Davis would show for @JenB

 

[Jonathan Edwards]

Dear @JenB and @Jeff_w,

It is good to hear that you are both better.

If there is a genuine link between CCI and ME symptoms then it is crucial that it is properly documented and the treatment is tested in a reliable way.

We have to remember that people have gone into remission with a lot of other procedures including rituximab infusions (the lady in Norway) and the Lightning Process (another lady in Norway). In the case of rituximab we can now be fairly certain that the drug has no effect itself and that the recovery was for other reasons. In the case of LP the recovery was presumably for psychological reasons because that is the only way the treatment can work.

So, like Dr Fluge and Dr Mella, we need to be cautious and gather reliable evidence before making any suggestion that anyone else should attempt the treatment. That is particularly relevant for cervical surgery because it can be complicated by tetraplegia or death.

The finding of CCI in 17 out of 24 cases getting cervical imaging either means that the majority of people with ME have CCI or that the test is unreliable. It is essential that we know the answer to this. So it is essential that the findings are published. The doctors who made these assessments are ethically obliged to make public the nature of the findings. They are also ethically obliged to repeat the observation on blinded cases and controls. Drs Fluge and Mella worked hard to check their observations. In comparison this would be easy.

Without that I have to conclude that the most likely explanation is that recoveries after cervical surgery do not indicate that cervical surgery has any specific action, but that recovery is for other reasons as for the rituximab and LP cases. If we knew what the other reasons were life would be simple, but at present we have no idea. Maybe anaesthesia can trigger a remission.

If you want to further the cause of research into ME please make it clear to your surgeons and those involved in imaging that we need the objective data published and without delay.

 

[Trish]

Thanks @JenB for coming here to read the comments. I very much hope that your recovery from all that surgery and your remission of your ME symptoms continues.

I have just read the e-mail that you have sent to those who have signed up to receive them. I hope you don't mind if I quote part of it:

Yesterday, I shared the news with our community that all of my symptoms of myalgic encephalomyelitis (ME) are now in remission. This is the outcome of a long journey that began last year with surgery for thyroid cancer; took an unexpected turn for the worse with the sudden onset of a new symptom, central apnea, as a result of that surgery; and culminated in a diagnosis of craniocervical instability and tethered cord syndrome. Since June, beginning with the thyroidectomy, I’ve had five surgeries. It has been the most challenging year of my life. The remarkable outcome, though, is that all of my symptoms of ME are resolving. This doesn’t mean I am 100%––I am still recovering from the surgeries themselves, a process that will take at least twelve months.

What I will say is that by every objective measurement and subjective expert opinion, my ME diagnosis was accurate. I just never imagined as an acute, viral onset patient, that my symptoms could have a structural, mechanical cause. My hope going into surgery was simply that I might resolve the apnea and other neurological symptoms that developed or worsened after thyroid surgery. Recovery from ME is something I never thought would happen for me personally without many more years, even decades, of research.

So as I understand it, the sequence of events was:

- ME developed following a viral infection about 7? years ago, and became severe for some years.

- Thyroid tumor diagnosed a few years ago not requiring urgent treatment.

- Thyroid surgery carried out 1 year ago, at a time when ME symptoms were improving so well enough to undergo surgery.

-Completely new serious neurological symptoms including central apnoea and numbness in arms developed following thyroid surgery.

-These new neurological symptoms diagnosed as CCI/AAI.

- CCI/AAI surgery carried out.

- New tethered cord symptoms developed following CCI/AAI surgery.

- Gradual recovery from all 5 surgeries in the last few months.

- Remission from ME symptoms in the last few months.

I do understand the natural wish to form hypotheses to try to explain why ME symptoms have also improved significantly following the surgery, but as you have said yourself, Jen, your idea that your ME could have been caused by a milder CCI/AAI problem in existence before you had any of the neurological symptoms of CCI/AAI is just that - a hypothesis.

Reading the sequence events stripped of hypotheses, one could form all sorts of hypotheses about why someone going through that sequence of events might find their ME symptoms currently in remission. I am not going to speculate about an individual case. I don't think that is appropriate - I am not a doctor and quite rightly only have access to the bare bones of any individual's medical history.

The point I am making is that, as Jen herself has said, the idea that ME can be caused by CCI is at this stage simply a completely unproven hypothesis.

Crossposted with @Jonathan Edwards. I agree with everything he says. We need proper scientific research on this, and need to reserve judgement on cause and effect until that research has been done.

 

[Milo]

Maybe anaesthesia can trigger a remission

Not in my case. Going through surgery with ME is horrendous. I’ve had 4 of them and each involved months of rehab which involved graded exercise therapy.

I do agree that there needs to be publications from the diagnosing physician. I am a little bit curious as whether ME could be caused by long term effects of a concussion, but i am not attached to a particular cause, I am definitely more interested in finding treatments that are effective.

i am a little skeptical by the fact that only 4 or 5 centers from around the world is aware of the problem and that in order to be diagnosed with CCI you need to see these specific doctors. It is a red flag to me. I do not want to discredit the experience of those who truly had a problem which was corrected by surgery. I am glad that it worked out for them. But at this point we cannot generalize to the entire ME population.

And then it is really hard to link mold illness, to viral onset, to Chronic Lyme disease to viral reactivation, to gut dysfunction, to mitochondria dysfunction to MTHFR mutation to the old theory of heavy metal toxicity and then there is the enterovirus theory. There has been lots of theories throughout the years, you know, and this CCI thing is another one, which remains to be confirmed to a wider sample population.

This said, I think @JenB has used great caution in sharing her experience and I appreciate that.

Lastly, just because it came to my mind in writing this post, i was diagnosed with CFS (my GP’s words) in August 2009. in September of the same year, Dr Mikovitz published her XMRV paper in Science. Many patients rushed to get tested for XMRV, paying a lot of money to find out whether they had the retrovirus. I tested negative, and my peers in the other forums felt that I didn’t have the disease if I tested negative for XMRV. 10 years later, I am still here. Patients are desperate to get better and will go to great lengths to access treatments and rule out other diseases. This desperation have led people to abandon their homes to live in the desert (mold theory), order medication from India and injecting without medical supervision, and endless experimentation with extreme diets, fastings, supplements, chelation, antibiotic therapies, just to name a few.

We desperately need science and medical care. Said the 17 millions of us.

 

[Jeff_w]

Dear @JenB and @Jeff_w,

It is good to hear that you are both better.

Much appreciated, Dr. Edwards. Mattie is also better.

If there is a genuine link between CCI and ME symptoms then it is crucial that it is properly documented and the treatment is tested in a reliable way.

The doctors who made these assessments are ethically obliged to make public the nature of the findings. They are also ethically obliged to repeat the observation on blinded cases and controls.

Indeed.

The first step is a case study. An MD, Jen, myself, and one other patient are involved in this. The second step will be a study testing for the presence/absence of measurable CCI-related brainstem compression in people with ME. A potential biomarker study, if you will. Michael VanElzakker, at Harvard University, is intensely interested in studying the brainstem as it relates to ME.

Maybe anaesthesia can trigger a remission.

It's an interesting idea, isn't it. It can't possibly be the case though for either Jen or for me. This is evident given Jen's response to anesthesia during her thyroid surgery, 6 months prior to her fusion surgery. She emerged from thyroid surgery in a much deteriorated state.

It also couldn't be the case given my pre-surgical response to invasive cervical traction. Prior to my fusion surgery (and my subsequent hospital stay, anesthesia, associated meds), the neurosurgeon performed a traction test on me that would perfectly mimic a fusion. The purpose of this traction test was to make sure I would be a good surgical candidate.

During this pre-surgical traction test, I felt entirely healthy. With this traction test, the neurosurgeon temporarily lifts the skull off of the brainstem in a precise, x-ray-guided manner -- completely freeing the brainstem from mechanical compression. When the neurosurgeon let go, with zero halo traction, I had POTS and other symptoms once again.

During this traction test, the neurosurgeon takes objective measurements of the patient's heart rate and blood pressure, in addition to gathering subjective data from the patient. I, and other ME patients, had improvement in both objective and subjective measures under traction, as well as post-fusion.