Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

[femtosecond99]

Just to clarify: of course liberation therapy is completely different from Chiari treatment. I was providing it as an example of another type of surgery that had a huge amount of anecdotal positive reports, positive uncontrolled trials, somewhat risky procedure, somewhat dubious science, which turned out to be completely ineffective.

 

[jeff_w]

Just to clarify: of course liberation therapy is completely different from Chiari treatment.

It's great to see you're acknowledging this now. These surgeries are indeed completely different.

Earlier today you repeatedly said they were similar and wrote, "Overall, it seems to be very similar to Liberation Therapy for MS." Glad to see you've come around.

somewhat risky procedure

It's great that you've stopped repeatedly portraying these surgeries as "extremely risky." You repeatedly made that false claim, earlier.

Again, these surgeries are no more risky than other neurosurgeries.

All surgeries carry some degree of risk. Each individual would need to weigh the risks of Chiari or CCI surgery against the risks of not having surgery.

somewhat dubious science

That's a false claim.

which turned out to be completely ineffective.

Another false claim.

That's over 8 false claims that you've repeatedly made over the past two days, in this thread. So I'll ask you for the seventh time:

Why are you continuing to post false, unsubstantiated, and damaging claims in this thread? I've asked you this six times before, and you've dodged this question each time.

I look forward to your answer.

 

[unicorn7]

Yes, people with EDS are prone to POTS, MCAS, and CCI.

In my case, fixing the CCI took away both my POTS and my MCAS. So in my case, the cause of both was neurological.

I do have EDS but never knew it until I developed obvious CCI. I was never especially “bendy,” which is the EDS stereotype.

How did you find out you have EDS? Genetic testing? I didn't know you could have EDS without being hyper flexible.
It's pretty intriguing that you also got rid of your MCAS with the surgery.

 

[femtosecond99]

And to clarify again, this surgery is a lot more risky than liberation therapy.

 

[jeff_w]

And to clarify again, this surgery is a lot more risky than liberation therapy.

“Liberation Therapy.”

 

[jeff_w]

How did you find out you have EDS? I didn't know you could have EDS without being hyper flexible.

I found out after being diagnosed with CCI. My elbows and knees hyperextend, as well, but I’d never noticed or thought anything about it. It’s mild, and don’t have obviously flexible fingers, etc. But my craniocervical junction was extremely hypermobile.

It's pretty intriguing that you also got rid of your MCAS with the surgery.

I was surprised. I think it’s the neuro-immune connection.

 

[JES]

And to clarify again, this surgery is a lot more risky than liberation therapy.

The risk part is always carried with surgeries, the more important question is do these surgeries have any effect. I fail to see the parallels you draw with Chiari surgery and liberation therapy.

In MS, an inflammatory immune system mediated process forms plaques in the CNS, which disrupts the nerves their ability to conduct impulses. Liberation therapy does nothing to stop this process, all it does is to potentially improve blood flow to the brain and CNS and reduce symptoms. The MS plaques aren't going to magically disappear, so it's not a disease-modifying treatment at all and was never considered one. Whereas a Chiari surgery, provided that the CFS/ME symptoms stem from Chiari malformation, is a disease-modifying treatment and can potentially be curable. So there's the big difference.

 

[femtosecond99]

I fail to see the parallels you draw with Chiari surgery and liberation therapy.

The parallel isn't between the two surgeries, but in the fact that both are being pushed to patients with little to no evidence of effectiveness, and both had a lot of anecdotal reports and uncontrolled trials. In LT we only discovered it had no effect after controlled trials were done. For this Chiari surgery, there are no controlled trials as yet, and the evidence is just as speculative as for LT. I think it is useful for people to look into LT if they haven't already, to get an idea of why controlled trials are so important.

Liberation therapy does nothing to stop this process, all it does is to potentially improve blood flow to the brain and CNS and reduce symptoms.

It didn't even do that. Symptoms were the same in both groups:

https://news.ubc.ca/2017/03/08/cont...rapy-fails-to-treat-multiple-sclerosis-study/

Whereas a Chiari surgery, provided that the CFS/ME symptoms stem from Chiari malformation, is a disease-modifying treatment and can potentially be curable. So there's the big difference.

That was the thought behind LT for MS as well. However the theory was always speculative, as it is for Chiari as well.

 

[jeff_w]

In my own case, there was concrete MRI evidence of a severe abnormality. In the MRI imaging, you can actually see my brain stem being compressed. I'm so thankful, everyday, for that concrete evidence and for the surgical solution to my illness.

There’s really no reason to feel so much fear, @femtosecond99 . Especially since the fears about surgery that you're expressing aren’t really based on facts. I understand though that the thought of having neurosurgery can be scary. But if I recall correctly, you have recovered from your ME/CFS and won’t have to make any decisions about surgeries.

In my own case, the thought of not getting the surgery was more concerning than any fears I had about surgery. So I didn't agonize over theoretical, non-factual scenarios. My quality of life was so poor, and for me the risks of surgery were more than worth it for the chance of having a normal life again. And fortunately, that is the outcome I had.

The parallel isn't between the two surgeries, but in the fact that both are being pushed to patients

No surgeries were ever pushed on me, or on any of the other Chiari and CCI patients I’ve talked to over the past year.

It's scary to think that neurosurgeons would push surgery on patients, but the fears you're expressing aren't based on reality.

The patients have sought help themselves, and the top neurosurgeons are very upfront about both the benefits and risks involved.

with little to no evidence of effectiveness

It's scary to think that there's no evidence of effectiveness, but this fear that you're expressing isn't based on reality.

In Actuality
There are many peer-reviewed academic journal articles demonstrating evidence of effectiveness for Chiari and CCI surgeries.

However the theory was always speculative, as it is for Chiari as well.

This is your eleventh false claim posted to this thread.

In Actuality
Chiari and CCI are based on objective neurological imaging, not some speculative theory.

 

[Lisa108]

Thank you @jeff_w for all your continuing efforts to clarify things here.

For me, there is a clear distinction between surgery for Chiari/CCI and the 'Liberation therapy' for MS.

In Chiari and CCI we have clear-cut, structural defects (skull and neck) leading directly to the damage of the central nervous system. Surgery is treating the root cause.

In 'Liberation therapy' we have a structural defect (neck veins) that was irrelevant to the disease (MS), but nevertheless treated, to no avail.

['Liberation therapy' was based on the false assumption of one doc, that the narrowed neck veins he found in MS patients 'could be causing iron to accumulate in the brain and spinal cord, triggering an autoimmune response'.

So he dilatated the veins. He didn't check first if there was a connection between narrowed neck veins and MS or if this finding was pure coincidence.
A study from 2013 revealed that narrowed veins in the neck were not a distinct feature of MS, but were as common in the healthy control group.]

And as for the call for controlled trials:
Would one really like one group of patients with mri findings like Jeff's (skull sinking into the spinal cord) been treated with a 'placebo surgery'? We are talking here about compression of brain and spinal cord structures! A situation so severe that he was put in a halo...

For me, it is irrelevant if these mri findings (compression of brain and spinal cord structures) were caused by Chiari, EDS, a brain tumor or a car accident. It has to be fixed!

 

[femtosecond99]

In Chiari and CCI we have clear-cut, structural defects (skull and neck) leading directly to the damage of the central nervous system. Surgery is treating the root cause.

But do we actually have that evidence? If only 3 or 4 specialists in the USA are diagnosing this, that should raise some red flags.

As for it causing CFS-like symptoms: if there was a structural defect impinging on the sympathetic and/or parasympathetic nerves, you would expect it cause permanent symptoms rather than PEM.

 

[Lisa108]

But do we actually have that evidence? If only 3 or 4 specialists in the USA are diagnosing this, that should raise some red flags.

I don't think that this is what Jeff was saying. He mentioned specialists in the US and one in Spain who he recommends as THE top specialists. Chiari and CCI are also diagnosed here in Germany. We have upright MRIs, too.
A case as severe as Jeff's, most likely even I would have seen, being a physiotherapist with a little knowlegde in interpreting images.

But still, you need experts to see those cases that are hard to find. MRI pictures may be way better than let's say ultrasound, but they aren't photographs. Have you heard of people who have been misdiagnosed with having no fractures and then a second doc looked at the images and found it? I know many of these stories.

Interpreting images (whether mri or x-ray or ultrasound etc.) needs a LOT of expertise.

As for it causing CFS-like symptoms: if there was a structural defect impinging on the sympathetic and/or parasympathetic nerves, you would expect it cause permanent symptoms rather than PEM.

To the contrary! I would expect more transitory and differing symptoms, as the posture of your head/neck would determine the location and the degree of compression.

 

[femtosecond99]

I don't think that this is what Jeff was saying. He mentioned specialists in the US and one in Spain who he recommends as THE top specialists.

His wording was "These are the only neurosurgeons who consistently know how to read these images to diagnose CCI." (3 in the world)

To the contrary! I would expect more transitory and differing symptoms, as the posture of your head/neck would determine the location and the degree of compression.

I got the impression from the posts above that the symptoms weren't related to head/neck position.

 

[JES]

I don't know if we talk about a specific type of surgery, but Chiari surgeries are a common practice performed around the world, at least in all my neighbor countries. If we are to believe you, there must be some global conspiracy of doctors performing Chiari surgeries in almost every country with apparently no evidence basis. Mayo Clinic has the following to say about Chiari surgeries:

Doctors usually treat symptomatic Chiari malformation with surgery. The goal is to stop the progression of changes in the anatomy of your brain and spinal canal, as well as ease or stabilize your symptoms.

When successful, surgery can reduce pressure on your cerebellum and spinal cord, and restore the normal flow of spinal fluid.

In the most common surgery for Chiari malformation, called posterior fossa decompression, your surgeon removes a small section of bone in the back of your skull, relieving pressure by giving your brain more room.

 

[femtosecond99]

I don't know if we talk about a specific type of surgery, but Chiari surgeries are a common practice performed around the world, at least in all my neighbor countries. If we are to believe you, there must be some global conspiracy of doctors performing Chiari surgeries in almost every country with apparently no evidence basis. Mayo Clinic has the following to say about Chiari surgeries:

I completely agree with that.The symptoms also don't list fatigue or PEM (only weakness, and it says that is less common).

I suspect Chiari is quite rare among "CFS" patients, but if the symptoms fit and there are obvious abnormalities then it is certainly worth investigating.

 

[Wayne]

Hey @jeff_w,

I've been curious if you ever experienced tinnitus, or any kind of ear/hearing irregularities before you got your operation. Ran across the following which I thought you might be interested in. -- @Cort

Chronic Cervicogenic Tinnitus Rapidly Resolved by Intermittent Use of Cervical Collar​

 

[jeff_w]

Hey @jeff_w,

I've been curious if you ever experienced tinnitus, or any kind of ear/hearing irregularities before you got your operation. Ran across the following which I thought you might be interested in.

Chronic Cervicogenic Tinnitus Rapidly Resolved by Intermittent Use of Cervical Collar​

Hi @Wayne -

I never had tinnitus, but a lot of people in my Chiari/CCI group had it before their surgeries.

Interesting article, thanks!

 

[Lisa108]

Hi @femtosecond99!

His wording was "These are the only neurosurgeons who consistently know how to read these images to diagnose CCI." (3 in the world)

The emphasis here, IMO, is on consistently. Meaning that other specialists might not be able to identify the more "hidden" cases.

Upright mri's are not only pictures that are taken while the patients are sitting (instead of lying). They are also taken while the patients are moving their heads/necks into different positions.
So that means there are a lot of pictures taken, all have to be looked at very carefully, measuring a lot of different angles, etc. As I said above, even fractures tend to be overlooked quite commonly [in still pictures!].

So I really appreciate Jeff's recommendations of the most reliable specialists to diagnose/outrule Chiari and CCI.

I got the impression from the posts above that the symptoms weren't related to head/neck position.

I don't know if Jeff mentioned it anywhere. I do not know if this is even the case in most people with Chiari and/or CCI. It is something that I would expect, as I said above.

Imagine you'd have a prolapsed lumbar disc. It would hurt* pretty much all the time, but would inhibit you from standing upright, while would be better lying on your back with your legs elevated on a stool etc. Now imagine you'd have to cough or sneeze... [* there might be other symptoms as well, just focusing on pain here]

So I'd say symptoms would be dependent on what structure/s (brain? nerve roots? spinal cord?) being compressed at what length of time (permanently? intermittendly?). And also bearing in mind that compression would additionally lead to inflammation of these structures, leading to further and/or increasing current symptoms.

P.S. English is not my first language, so I'd like to apologize for any unprecise/wrong/funny wording.

And Hi @Wayne

Chronic Cervicogenic Tinnitus Rapidly Resolved by Intermittent Use of Cervical Collar

Thanks for the link, interesting indeed!
Yesterday, I ordered a soft cervical collar, just to find out if certain symptoms might be related to my neck. I've had 4 whiplash injuries in the past and my neck is kind of my 'weak spot'.

 

[jeff_w]

In my own case, I come back to this board to share science and information. I also come here to share my own recovery story, in order to help others.

My education was interrupted due to becoming ill. I'm getting physically stronger, but I'm still not quite able to go to school or work yet. Reason being, I was 100% bedbound for 5 months last year, and prior to that, I was primarily bedridden for 3 years. I'm now building myself up with physical therapy, in preparation for living a normal life again.

After my halo and surgery for craniocervical instability, I can now exercise without PEM, my POTS is gone, and I don't feel sick at all. I never could have done physical therapy prior to my surgery, due to severe PEM that would cause months-long crashes. During my crashes, I'd have to spend all day long lying down in a dark room.

But I'm now teaching myself computer programming throughout the day, as I'm finally free from brain fog that I had for years. I'm taking online university courses in computer science. One of my goals is to develop apps for people with chronic illness.

Once I'm physically strong enough to live a normal life, I probably won't post here as often. But, I plan to always come back from time to time, to share information. I know the suffering that POTS, PEM, constant disability and sickness can bring. I will never forget it.

So what I don't understand, @femtosecond99 , is why you are continuing to post false claims about the very science that cured my ME/CFS (POTS, PEM, etc.). This same science could be extremely helpful to others on this board. But you're literally giving false information.

You believe in exercise therapy (GET) as a method for recovery. You also promote psychological therapy (CBT) as a means to recovery. And it's your right to do so. You recently posted this:

The common factors in recovery stories seem to be removing the stress and slowly increasing activity. This would correspond to CBT, GET and FITNET in clinical trials.

And:

I haven't come across a CFS patient who is living a stress-free life, not pushing themselves too hard, who hasn't been able to gradually improve and eventually recover.

​

Like I said, it's fine that you support psychological therapy (CBT), exercise therapy (GET), stress-reduction, etc. That is your theory about what works for recovery.

You have also written:

I'm fully recovered from CFS (developed CFS in 1999), and now essentially living a normal life. I live in Canada. I'm posting here to try to help other people

You say you've fully recovered, and in your own words, you are "now essentially living a normal life." That is great to hear, as nobody should suffer.

But to my mind, coming on Phoenix Rising and spending hours posting 13 false claims is very far from "living a normal life."

You wrote:

When I had CFS there was very little good information out there and I found it very difficult to find out about the illness. Things don't seem to have improved much in 15 years.

With all due respect, if you're concerned about good information, then why post false claims on a regular basis? If you are living a normal life, then why spend hours posting false claim after false claim on an ME/CFS board?

I assume you have a job now? And you mentioned having a wife. You say you want to come here and help people, but your own statements are so contrary to that goal.

This is not how most people who are living a normal life would choose to spend their time.

 

[Lisa108]

but if the symptoms fit and there are obvious abnormalities then it is certainly worth investigating.

Yes. Nothing else has been suggested here.

So, for what it's worth, I think that the 'devil's advocate posts' from femto have (unintendedly or not) just made things clearer, as Jeff was able to counter them all, passing ever more information alongside.

@jeff_w I'm very happy to hear that your progress continues. Please keep us updated!