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

[nasim marie jafry]

To be more clear: I was asserting that a cervical MRI is indicated with on going neck problems in many cases, even if there are absolutely no reasons to suspect CCI/AAI or Chiari. I can a very important diagnostic tool.

Hello, Of course I agree that one should have concerning non-ME neck problems investigated. But I say again, with RamsayME, the trapezium muscle is often affected and I have had myalgia/feelings of severe inflammation/ pressure in neck/head/ shoulders since early on in my illness. It is described in the literature as being characteristic.

My point is about my fear of CCI and ME being conflated, we need to be cautious and not alarm pwME into thinking they now have CCI. Jeff suggested to me that my neck problems *could* be CCI, even when I explained I have been living with ME for 36 years. And Jennifer has spoken much of her own experience of CCI and ME on social media, my concern is she has overstated the link, though I see in recent tweets, possibly as a response to Truthseeker's tweet, she has been careful to say that her procedure is not the answer for everyone. She has also tweeted re. a further surgery, she is dealing with the frightening aftermath of a CSF leak (I think). Again this is not typical of an ME sufferer. She seems to have been horribly unlucky. I think this CCI surgery sounds terrifying and I am sure no one would consider it - a brave decision - unless their neck problems indicated it was the solution. Again this is not a typical ME picture. I feel certain that if ME had any kind of structural basis it would have been dscovered long before now.

I also realise I am probably in the minority on here in having had a robust ME neurology diagnosis in early-mid eighties, but I can only speak from my own experience. I reiterate if you are not sure if you have ME and that your ongoing neck issues are not ME-related, of course you should further explore! And Jeff's experience has been extremely illuminating. But both Jeff and Jennifer, I understand, had investigations for CCI only when they developed new - post-surgery - symptoms. So perhaps they had CCI all along which was 'masquerading' as ME, and their respective surgeries exacerbated CCI to a perilous state where they simply could not endure the neck symptoms any longer.

*typos edited and a sentence at end added.

 

[MEPatient345]

ME (or “CFS” as is usually the case) as a diagnosis tends to lead to closed doors and halted investigations, unless you as a patient can keep pushing for tests. I have seen about 30 doctors in 3 countries, have done a myriad of testing and am no closer to an answer on what is really wrong with me, what caused my ME. I have no idea what a “robust ME neurology diagnosis” means, or how someone gets one of those. We are all different and it’s clearly not a homeogenous patient population.

So, for me the idea that we need to be cautious and not alarmist about conflating CCI, or also cervical spine stenosis, and ME is a non issue. I continue to investigate any avenue that may lead to answers. I am alarmed that I am losing my life, not alarmed that I am investigating another potential diagnosis. Why worry that people are being alerted to a new possible diagnosis since most of us have never had MRIs of our cervical spine done? Or if we did, it was a 1.5 Tesla MRI with less information visible, or it was read by someone who didn’t know how to look for these issues or wasn’t aware of new techniques. My personal approach is — keep looking for answers.

 

[nasim marie jafry]

As I

ME (or “CFS” as is usually the case) as a diagnosis tends to lead to closed doors and halted investigations, unless you as a patient can keep pushing for tests. I have seen about 30 doctors in 3 countries, have done a myriad of testing and am no closer to an answer on what is really wrong with me, what caused my ME. I have no idea what a “robust ME neurology diagnosis” means, or how someone gets one of those. We are all different and it’s clearly not a homeogenous patient population.

So, for me the idea that we need to be cautious and not alarmist about conflating CCI, or also cervical spine stenosis, and ME is a non issue. I continue to investigate any avenue that may lead to answers. I am alarmed that I am losing my life, not alarmed that I am investigating another potential diagnosis. Why worry that people are being alerted to a new possible diagnosis since most of us have never had MRIs of our cervical spine done? Or if we did, it was a 1.5 Tesla MRI with less information visible, or it was read by someone who didn’t know how to look for these issues or wasn’t aware of new techniques. My personal approach is — keep looking for answers.

I am not worried about people seeking new diagnoses, I am worried that ME is being moulded by ever-changing criteria to represent every poorly understood illness there is. It makes no sense.

As I said I was diagnosed by consultant neurologist early 1983, who confirmed 'presumed ME' with abnormal muscle biopsy, and EMG and blood tests/immune profiling. I was finally diagnosed properly after 18 months of illness/hell, aged twenty. I had experimental immunotherapy under this doctor on the NHS, plasma exchange etc. This was pre-hijacking by Wessely and co, who reframed the illness as 'CFS', an unfortunate term coined in USA in 1984 to describe Tahoe outbreak, as far as I am aware.

My diagnosing neurologist also wrote the preface to Dr Melvin Ramsay's very important 1986 text on ME. Dr Ramsay was the UK infectious diseases consultant who first identified/observed ME in 1950s.

CFS did not exist as a concept in 1982 when I got Coxsackie virus, which triggered ME. I never say I have CFS, I say I have ME. And I could not possibly have spent the last 36 years looking for further diagnoses, what would be the point in that? I personally know what illness I have. If I at all thought I didn't have ME, or developed new symptoms, of course I would seek further investigation.

My priority is - and always has been - to fight for recognition of ME and for biomedical research.

 

[StarChild56]

Hello, Of course I agree that one should have concerning non-ME neck problems investigated. But I say again, with RamsayME, the trapezium muscle is often affected and I have had myalgia/feelings of severe inflammation/ pressure in neck/head/ shoulders since early on in my illness. It is described in the literature as being characteristic.

My point is about my fear of CCI and ME being conflated, we need to be cautious and not alarm pwME into thinking they now have CCI. Jeff suggested to me that my neck problems *could* be CCI, even when I explained I have been living with ME for 36 years. And Jennifer has spoken much of her own experience of CCI and ME on social media, my concern is she has overstated the link, though I see in recent tweets, possibly as a response to Truthseeker's tweet, she has been careful to say that her procedure is not the answer for everyone. She has also tweeted re. a further surgery, she is dealing with the frightening aftermath of a CSF leak (I think). Again this is not typical of an ME sufferer. She seems to have been horribly unlucky. I think this CCI surgery sounds terrifying and I am sure no one would consider it - a brave decision - unless their neck problems indicated it was the solution. Again this is not a typical ME picture. I feel certain that if ME had any kind of structural basis it would have been dscovered long before now.

I also realise I am probably in the minority on here in having had a robust ME neurology diagnosis in early-mid eighties, but I can only speak from my own experience. I reiterate if you are not sure if you have ME and that your ongoing neck issues are not ME-related, of course you should further explore! And Jeff's experience has been extremely illuminating. But both Jeff and Jennifer, I understand, had investigations for CCI only when they developed new - post-surgery - symptoms. So perhaps they had CCI all along which was 'masquerading' as ME, and their respective surgeries exacerbated CCI to a perilous state where they simply could not endure the neck symptoms any longer.

*typos edited and a sentence at end added.

Hello,

I hear (am trying, I may not understand fully) your concerns that ME and CCI may get conflated and it sounds like you have had ME for long time and understandably want research to find a cure for ME.


I feel @jeff_w and Jen Brea are doing a great service by telling their stories and getting the information out there - because CCI/AAI are not recognized by most doctors/neurosurgeons so just like with ME, or other overlooked illnesses - education and advocacy are critical.

I don't think it is possible from stopping some people from thinking some things even if they are not true. However, I think most people that are seeking information and trying to help their chronic illnesses have the ability to discern what is important for their own bodies, you know? We are all different.

I want ME to have the research it deserves and a cure. I think we can be safe in believing all here want that

 

[MEPatient345]

@nasim marie jafry just to clarify — I am not questioning your diagnosis or experience.

That is fascinating.. I had no idea they did so much back then to diagnose patients. I can tell you as someone who got ill in 2013, that a) most doctors including specialists use the term CFS to diagnose what we all call ME or ME/CFS, and that b) most of them do it without as many tests as you have had done based more on symptoms and ruling out other diseases.

Is there a muscle test for ME? Wouldn’t that be a biomarker? Did you have a series of tests that diagnosed ME or that ruled out all other diseases?

I have had a ton of blood tests, immune and autoimmune testing (some done in Oxford) , MCAS testing and am mostly negative on everything. I have been diagnosed with CFS by multiple doctors based on my symptoms. But, I use the term ME since I qualify by all ME criteria out there.

The point of looking for other diagnoses is that with new technology and new advances in science, you may find answers or treatments that seeing a doctor for ME will not lead you to. I know I have ME, but I also know there are no treatments, and therefore it has led me to zero success in improving my quality of life. I do not know if I have other underlying conditions that are treatable until I have ruled out those things. 5 years after diagnosis I am still working my way down a list of specialists to see who can run ever more tests. I admit it has led to nothing yet, but since each of them says “well no one looked at this yet..”, that tells me that there are more things to examine.

My point is — you can be a person with ME who supports ME biomedical research, but still look for other answers. The two things are not exclusive.

 

[StarChild56]

My point is — you can be a person with ME who supports ME biomedical research, but still look for other answers. The two things are not exclusive.

Well said.

 

[sb4]

In my experience, my diagnosis of CFS was from a GP who said maybe you have CFS, here is a support group that offers no treatment options and no further testing. So it was the very opposite of exhaustive testing leaving only CFS remaining.

I should imagine this is many others experience as well, especially in the UK. Also, pretty much all other doctors I visited after ignored this "diagnosis".

 

[Sushi]

I have EDS and had no clue.

Re: dissection--I believe that this mainly a problem for patients with vascular EDS. Vascular EDS is much less common than other types so if you have an EDS diagnosis (as I do) you probably don't have to worry about aortic dissection unless you have that type.

 

[Wayne]

I feel certain that if ME had any kind of structural basis it would have been dscovered long before now.

There was a fairly lengthy discussion several years about a chiropractor who claimed to have accidentally discovered a lot of his CFS patients improved signfiicantly by adjusting certain upper cervical vertebrae. I seem to recall it was somewhat controversial, but I thought he was on to something to a certain degree (don't know what that degree was). I just tried to find those discussions, but wasn't able to. If anybody reading this can find it for me, I'd appreciate it! I think the chiropractor's last name started with a P.

 

[Sushi]

There was a fairly lengthy discussion several years about a chiropractor who claimed to have accidentally discovered a lot of his CFS patients improved signfiicantly be adjusting certain upper cervical vertebrae.

Just a personal anecdote: I used to have significant cervical neck pain but later some of those vertabrae fused by themselves (it didn't affect my ability to turn my head). I no longer have neck pain but the fusion had no effect on my ME/CFS. I realize that this is different from Chiari and CCI but I thought I'd just add my experience as there may be others with a similar situation to mine.

 

[jeff_w]

Just a personal anecdote: I used to have significant cervical neck pain but later some of those vertabrae fused by themselves (it didn't affect my ability to turn my head). I no longer have neck pain but the fusion had no effect on my ME/CFS. I realize that this is different from Chiari and CCI but I thought I'd just add my experience as there may be others with a similar situation to mine.

Hi Sushi. As I understand it, vertebrae self-fuse when there is a very pathological spinal process. The pathological ligaments ossify, and the spine fuses.

This type of self-fusion occurs without regard to proper spinal alignment or structural neurological compression. So, a person's spine may self-fuse in a pathological manner that keeps the neurological structures compressed. Whereas, in contrast, a surgical fusion restores the spinal alignment so that neurological structures are not under compression.

In my own case, I have bone spurs at every level of my cervical spine along with ligament ossification. My neurosurgeon told me that people with spines like mine are at risk of self-fusing. If I had left things alone and self-fused in my previous "natural" position, I would have been stuck with POTS, PEM, etc and remained as sick as I was. Whereas, my surgical fusion restored proper spinal alignment and relieved brainstem compression, neurological strain, etc.

 

[Sushi]

My neurosurgeon told me that people with spines like mine are at risk of self-fusing. If I had left things alone and self-fused in my previous "natural" position, I would have been stuck with POTS, PEM, etc and remained as sick as I was. Whereas, my surgical fusion restored proper spinal alignment and relieved brainstem compression, neurological strain, etc.

Very interesting. So glad that you had proper surgical fusion. Your post gives a very helpful explanation.

 

[toyfoof]

Re: dissection--I believe that this mainly a problem for patients with vascular EDS. Vascular EDS is much less common than other types so if you have an EDS diagnosis (as I do) you probably don't have to worry about aortic dissection unless you have that type.

Good info! I'm just starting to learn about the different types of EDS. This link gives more information about dissection and the link to vascular EDS: https://www.ehlers-danlos.com/aorticdissectionday18/

@StarChild56 it looks like you don't have to worry about dissection.

 

[StarChild56]

Re: dissection--I believe that this mainly a problem for patients with vascular EDS. Vascular EDS is much less common than other types so if you have an EDS diagnosis (as I do) you probably don't have to worry about aortic dissection unless you have that type.

Thank you - mine is not vascular. Hypermobile I believe.

 

[StarChild56]

it looks like you don't have to worry about dissection.

That is a relief

 

[Wayne]

As I understand it, vertebrae self-fuse when there is a very pathological spinal process. The pathological ligaments ossify, and the spine fuses.

Hi @jeff_w, that makes total sense to me. -- Just wanted to let you know, I printed out your story from your website [The [Mechanical Basis of ME/CFS] and gave it to my physical therapist last week. When I saw her today, she said she had read it, and was clearly impressed with your story. Like me, she seemed to believe your story was not only one of health improvement(s) under extraordinary circumstances, but a testament to the human spirit as well.

I don't recall her exact words, but she said she was planning on printing this out for a number of her colleagues who she felt would be equally impressed by your story. -- This is the way I think things often begin to change. A story like yours becomes known, and eventually begins to become part of the conversation--in this case among health professionals. I know you spent a great deal of time writing your story, as it was both compelling and well articulated. Kudos to you for your efforts. I believe many people will eventually benefit from it.

BTW, my physical therapist mentioned prolotherapy to me and gave me some literature from a local practitioner. Prolotherapy apparently stimulates ligaments to heal and get stronger. Are you by an chance familiar with it? I feel pretty certain I have some degree of CCI and/or AAI, but don't know whether it's enough that would warrant fusion surgery. So I'm wondering if prolotherapy might be a viable option for situations like mine.

“Unique Manual Physical Therapy Approach to Treating Craniocervical Instability & Chiari” - Dr. Michael Healy

Hi @StarChild56, I can't seem to get this video to play. Is there some "little" trick my CFS brain can't seem to figure out, or do they want payment of some kind to watch it? -- Thanks!

 

[Sushi]

my physical therapist mentioned prolotherapy to me and gave me some literature from a local practitioner. Prolotherapy apparently stimulates ligaments to heal and get stronger.

I've had prolotherapy. The theory is very simple: you irritate the ligaments by injecting sugar and lidocaine into them (it really hurts!) and their natural response is to tighten up and thicken. They don't exactly "heal," but if they are lax due to EDS, they often tighten up.

 

[Gingergrrl]

I got way behind on this thread b/c I had an MRI this morning of my cervical spine (which I will briefly describe in a new post shortly).

I feel @jeff_w and Jen Brea are doing a great service by telling their stories and getting the information out there - because CCI/AAI are not recognized by most doctors/ neurosurgeons so just like with ME, or other overlooked illnesses - education and advocacy are critical.

I agree and well said.

Is there a muscle test for ME? Wouldn’t that be a biomarker? Did you have a series of tests that diagnosed ME or that ruled out all other diseases?

I was very curious about this, too. @nasim marie jafry was there a specific muscle test (or other tests?) that served as a bio-marker for ME/CFS when you were tested in the 80's in the UK that are no longer performed or recognized today? How did they rule out all of the other diseases on the paper that you posted a few days ago?

I use "ME/CFS" b/c I prefer it to "CFS" which is the term used in the US (and the term "ME" is just not used here but that is an entirely separate issue)! I was diagnosed with "CFS" in 2013 and 2014 by multiple doctors of different specialties and I believed it to be correct at that time b/c I knew no differently. It was actually because of Phoenix Rising that I began to dig deeper and found my doctor and got additional testing.

It will be so much easier once there is a bio-marker (and I believe that day will come). Until then, we are all doing the best that we can to sort out our individual health situations. I have talked to MANY people on PR who have no neck issues whatsoever but also to others like me who have a long history of neck pain. Mine started in 2006 with a bad car accident and whiplash, when my car was hit and flipped upside down, followed by an arm injury from the antibiotic, Levaquin, in which my already weakened neck had to compensate for my arm.

I do not suspect that I have CCI/AAI vs. cervical stenosis, bulging discs, and cervical radiculopathy (b/c the pain radiates down my right arm and it is sometimes numb). Because of Jeff sharing his story, and having the same doctor, we finally decided that it was time for me to start PT and get a cervical MRI to see what the heck is going on and compare it to my neck MRI of 2010. I honestly see no downside to this and if the MRI does show signs of CCI (which I do not suspect it will), then I can get additional testing and will probably purchase a home traction device (per my doctor and PT... am not going rogue LOL)!

I had always believed that my chronic, worsening neck issues were not related whatsoever to my overall illness (which turned out to be EBV/Mono virally triggered autoimmunity plus POTS, Hashimoto's, MCAS, and lots of other crap) but now I do wonder how much of this could have been connected to my neck issue? The reason that I think they are unrelated (in my own case) is b/c of the level of improvement that I have had from autoimmune treatments. But my neck pain continues to worsen.

I do not know if I have other underlying conditions that are treatable until I have ruled out those things.

Exactly!

If anybody reading this can find it for me, I'd appreciate it! I think the chiropractor's last name started with a P.

Wayne, I did a Google site search and cannot find a chiropractor whose last name starts with "P" but found a "Dr. Amir" and "Atlas Profiliaxis Treatment". I know almost nothing about this (and did not read through the old threads and am not endorsing it) but I wanted to mention in case it was what you were looking for?

This type of self-fusion occurs without regard to proper spinal alignment or structural neurological compression. So, a person's spine may self-fuse in a pathological manner that keeps the neurological structures compressed. Whereas, in contrast, a surgical fusion restores the spinal alignment so that neurological structures are not under compression.

Jeff, would this type of self-fusion (from a prior neck injury) show up on an MRI if it has occurred?

Like me, she seemed to believe your story was not only one of health improvement(s) under extraordinary circumstances, but a testament to the human spirit as well.

+1 and I totally agree!

 

[taniaaust1]

There was a fairly lengthy discussion several years about a chiropractor who claimed to have accidentally discovered a lot of his CFS patients improved signfiicantly be adjusting certain upper cervical vertebrae. I seem to recall it was somewhat controversial, but I thought he was on to something to a certain degree (don't know what that degree was). I just tried to find those discussions, but wasn't able to. If anybody reading this can find it for me, I'd appreciate it! I think the chiropractor's last name started with a P.

I'd never heard of that chiropractor before but mine got rid of constant dizziness I had for several years which I had previously believed was from the ME by a neck adjustment. So it would not surprise me at all if some of us could be helped a bit (not cured but helped some) by this.

 

[Wayne]

The reason that I think they are unrelated (in my own case) is b/c of the level of improvement that I have had from autoimmune treatments. But my neck pain continues to worsen.

If I may offer a hypothesis (most of which is derived from my own experience): -- I believe a neck injury/whiplash can shift the atlas enough so that 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. If this scenario is accurate for other people with ME/CFS, perhaps it could explain your own circumstances. Is it possible your injured neck may have indirectly contributed to your autoimmune disorder? Which leads to the question, "could effectively treating that neck injury help correct the autoimmune disorder? -- I'm not putting out this rhetorical question for just your situation, but for others on this forum as well, especially those who have known serious neck issues.