Jeff Wood’s remarkable recovery from severe ME/CFS following spinal surgery to correct craniocervical instability (CCI) and other problems shocked the ME/CFS community. It’s safe to say that almost no one saw that coming. Since then, others, including Jen Brea and Julie Rehmeyer, have been diagnosed and undergone surgery, while others have chosen different paths. The unusual diagnosis – and the prospect of possibly undergoing neurosurgery – have, not surprisingly, sparked some controversy. In this editorial, Jeff – the one who started all this off in 2018 – addresses some of the misconceptions about surgery he believes have arisen.
During my years spent bedridden with severe ME, I ultimately figured out that I had craniocervical instability (CCI). In January of 2018, I chose to have a skull-to-C2 fusion surgery to correct the CCI. This was followed by a second neurosurgery to correct a tethered spinal cord. Since then, I have remained in remission from ME.
Hoping for Neurosurgery?
Almost every day, I receive emails from people with ME, saying they want neurosurgery and asking me how to go about getting it.
The reality is this: Neurosurgeons do not operate solely because someone has an ME diagnosis.
You can have severe POTS, PEM, and sensory sensitivity, exactly as I did. As life-destroying as those symptoms are, they are not an indication for neurosurgery. You can meet the International Consensus Criteria for ME, the Canadian Consensus Criteria for ME, and satisfy Ramsay’s definition of ME, exactly as I did. Yet, again, a neurosurgeon will not operate based solely on those reasons.
To operate based solely on an ME diagnosis would be irresponsible behavior on the part of any neurosurgeon.
The threshold for becoming a candidate for neurosurgery is high. The evaluation standards include extensive, careful, objective testing to identify potential underlying structural problems. Some of these conditions include craniocervical instability (CCI), Chiari malformations, tethered cord syndrome, Eagle’s syndrome, and cervical stenosis.
Research, Research, Research…
We don’t yet know how many people with ME have CCI, tethered cord, cervical stenosis, or other mechanical neurological conditions underlying their symptoms. Whether it’s 5%, 95%, or somewhere in between remains to be discovered. Research is the way to find out. It is very heartening to see our community calling for rigorous research into these areas. One additional research area is regenerative medicine, which includes potential non-surgical approaches to addressing some of these conditions.
Radical Surgery?
A chronically ill person who finds a serious underlying condition, and then chooses to address that condition, is not exactly a radical. Would a person with ME, who discovers they have hypothyroidism, be described as radical for deciding to treat it?
Yet, when a person with ME finds out they have CCI and decides to treat it, they are sometimes described as radical. I have been called a radical for connecting CCI to my ME symptoms – and for proposing the Mechanical Paradigm. I have also been called radical for being the first ME patient to undergo a fusion surgery.
I would suggest an alternative interpretation: Finding and treating a serious underlying or contributing condition is, arguably, rational.
I would even go one step further:
Identifying and treating a potential underlying problem is exactly what people with ME, and their physicians, have been hoping to do for decades.
To be very clear: A craniocervical fusion surgery is performed to address CCI – not to address ME. A tethered cord release surgery is performed to address tethered cord – not to address ME. What is new here is that CCI has emerged as an underlying cause of ME for some people, beginning with my own case in January of 2018. What is also new is that, within the small contingent of people with ME who have undergone CCI surgery, most have also had a tethered cord surgery.
Consider that ME has a poor prognosis. The idea that someone with such a serious illness should somehow refrain from addressing an underlying condition – I can’t quite follow that reasoning.
To my mind, it is logical that someone with a serious illness like ME would want to identify any potential underlying condition, including mechanical neurological distortion. If they did not want to consider various possibilities that might be contributing to some of their symptoms, I wouldn’t quite understand. Consider, again, the hypothyroid example: If someone had ME as well as severe hypothyroidism, they would likely choose to treat the hypothyroidism and see if their quality of life would improve.
It’s important to remember:
When someone receives a structural neurological diagnosis, such as CCI, that does not mean they need to have neurosurgery. Quite a few people choose to not have surgery. Some will try to address the problem with conservative measures, first. Some will decide to wait for more research.
Whether someone decides to move forward with neurosurgery, or to hold off on neurosurgery, their decision is worthy of respect.
Let’s Protect Each Other
Again: ME alone is not an indication for neurosurgery. Nobody in our community has undergone neurosurgery without a thorough evaluation demonstrating a correctible neurological condition. I had neurosurgery to address craniocervical instability (CCI). I also had neurosurgery to address tethered cord syndrome. In my case, and in the case of some others who have come after me, CCI and tethered cord turned out to be the cause of many, most, or all of our ME symptoms.
This is not to say that every person with ME will have CCI, tethered cord, or other mechanical conditions. In the absence of high-quality research, it is far too soon to draw that conclusion.
When people spread the idea that neurosurgery is being offered based on an ME diagnosis alone, that is false. These are harmful rumors that hurt our community. If you see someone repeating these rumors on social media, help them out! Give them the facts.
You can always link to this piece of writing, to help people better understand the situation.
People with ME have the lowest self-reported quality of life compared to other serious health conditions. People with ME live with a degree of chronic stress that many healthy people can’t begin to comprehend. Our community should not endure the additional burden of scary, unchecked rumors about neurosurgery. We need to protect each other, and sharing basic facts is a good way to do this.
We have watched COVID-19 spread exponentially, destroying lives in its wake. COVID-19 has left some people with ME-like symptoms. Amidst the tough reality of this rapidly spreading virus, and in addition to living with chronic illness, we can sometimes feel like the world is outside our control.
Here’s the good news: Accurate information can go viral, too! The information we chose to share is entirely within our own control. All it takes is a willingness to protect each other and share.
Stay safe! Onward!
Jeff Wood recovered completely from what appeared to be a very severe case of ME.
Jeff Wood is the creator of MechanicalBasis.org. In early 2017, after extensive research, Jeff figured out the cause of his own ME. He has remained in remission since his CCI and tethered cord surgeries. Jeff developed the Mechanical Paradigm in 2018. He has proposed that, for some, there may be a connection between ME and mechanical neurological conditions, specifically those associated with connective tissue disorders. Jeff has been calling for more research into these connections.
Dr. David Kaufman MD said to Jeff, “…this would not have been happening without your relentless research and perseverance. I give you full and complete credit for this.”
Dr. Paolo Bolognese MD said about Jeff’s work, “Exchange notes with Jeff Wood. I know these symptoms from the outside. He knows them from the inside. He is one of the most introspective patients I have ever met. And so far, he is batting 1,000…”
Jeff Wood is a consultant to chronically ill patients as well as to researchers and MDs who serve this community. He works with clients from all over the world, thus far from: Germany, France, India, Australia, Slovenia, Pakistan, the Netherlands, Mexico, the United Kingdom, Canada, and every geographical region of the United States.
Follow Jeff on Twitter.
Follow Jeff on Facebook.
Health Rising’s Fibromyalgia and ME/CFS Spinal Resources Center
Check out blogs on craniocervical instability, spinal stenosis, cerebral fluid leaks, cranial hypertension plus check out more resources on spinal issues in ME/CFS and FM
My son was diagnosed with CFS six years ago, but we found out he has a structural deformity called Pectus Excavatum. He will be undergoing surgery to correct this in November. It’s a pretty radical surgery, similar to the one for CCI. Would there be any interest if I documented my son’s journey and shared it with all of you?
Yes.
Yes, please. And good luck to your son!
Gail, my daughter has ME but because of Jeff, we were able to figure out that she had a connective tissue disorder and CCI that was the underlying cause of her ME. Pectus excavatum is a big marker for other connective tissue disorders, such as Marfan’s and MASS syndrome. I highly encourage you to seek out a specialist with knowledge of connective tissue disorders to rule that out for your son. CHOP is good with connective tissue stuff. Our EDS literate neurosurgeon is in SC, and there are others in the DC area. Best wishes.
Hi Patience. Nice to see you here, as well as on Facebook. I’m glad you and your daughter were able to figure out the connective tissue piece of the puzzle and find an EDS-literate neurosurgeon. Specialists can be hard to find and access.
Patience,
Can I ask who your neurosurgeon in SC is?
I have a friend with pectus excavatum and scoliosis. She has been extremely sick for 5 years now with major GI issues/bloating, constipation, incontinence, always feeling extremely cold. I am trying to convince her to get a doctor to look into connective tissue disorders and possible structural issues but she doesn’t believe it could be the problem. Would you have any documentation that could help me convince her?
Dont ever give up on trying to find out what is really wrong with you I have bed illfor 17 years and have been fighting the nhs for a correct diagnosis of my symptons as was told it was all in my then fnd I have bowel and bladder incontinece neuroligical symptons I cant walk without aids now and my life has been ruined ive just had my 3rd complaint meeting with southmead in bristol as Ive since been diagnosed with fowlers syndrome which is a rare condition which means your bladder stops working properly I got that diagnosis in london as bristol left me for 3 years even after having tests which showed my bladder didnt work still being told fnd due to this its damaged my bowel so now both dont work its been a constant battle I now have ptsd due to complete negligence I never gave up even though when I was at london having more tests for autotonomic failure as have low blood pressure and a long list of problems with my nervous system the first thing the doctor said after having all the tests which showed I lost the ability to sweat he said you have a problem excepting you have fnd and I said yes I do as my bladder and bowel are muscles abd fnd doesnt stop muscles working needless to say again they dont like it if you question them I felt like giving up but I tried one more thing contacted a geneticist in london had to pay and surprise all these symptons are linked I have EDS ehlers danlos symptons I cried as finally an answer the nhs said sorry Im now fighting for justice and trying to find a solicitor to help me and thats really difficult so please never just except what your told you know your own body they dont
Hi Gail,
I had Pectus Excavatum too. It was corrected in 2016 at age 45 (Nuss procedure). My sternum was elevated by 9 cm. My Haller index was 12. It is quite a brutal surgery that requires a VERY skillful surgeon especially for cases above 26-27 years old. Overnight my orthostatic intolerance was resolved by 90% and I now sleep 2 hours less than before. I had hypersomnia, now I’m almost in the normal range. My maximum ventilation capacity increased from 47% of the expected value (for a person of my gender, age and height) to 93%. My quality of life has increased considerably. There used to be a forum on pectus.com. Many people documented there their journey, but I think I was the only one with a diagnosis of ME/CFS.
I wish your son good luck.
Yes. Thank you.
Yes
Hi Gail,
Thanks for sharing this. Interestingly, Pectus Excavatum is often associated with genetic connective tissue disorders, such as Marfan Syndrome, Ehlers-Danlos Syndrome, and others. I’m curious if your son has been evaluated for or diagnosed with a connective tissue disorder? I’ve linked two relevant articles, below. Hoping all goes well with your son’s surgery.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3812532/
https://www.mayoclinic.org/medical-professionals/cardiovascular-diseases/news/pectus-excavatum-not-just-a-cosmetic-concern/mac-20430716
Hi Jeff,
My son performed the Beighton Test for two doctors and yes, he was diagnosed with EDS. However, he hasn’t taken the genetic test for EDS. Thank you for the links.
I take the opportunity to bring up that pectus excavatum/carniatum are seen in two inherited metabolic disorders that have a overlapping features with hEDS:
Hypophosphatasia
and
Classical Homocystinuria
(which is also a differential diagnosis for Marfan)
(There might be other types of homocystinurias as well; I need to check)
The advantage of these, is that they have clear diagnostic markers and molecular basis, while hEDS remains a clinical diagnosis for now.
That’s interesting because the one connective tissue issue that I know I have is the opposite – pectus carniatum. My twin brother has it as well but he is healthy. Who knoww, though, maybe it helped lay the groundwork for ME/CFS with me…
Cort, it’s fascinating that you have PC. Evidently, most doctors overlook PE and PC, believing they don’t cause problems. You might want to check out the FB group called Pectus Awareness and Support Group. Look at some of the things they chat about – exercise intolerance, fatigue, breathing problems, heart issues, dizziness upon standing, cold hands/feet and more.
Really! exercise intolerance and fatigue…No kidding. My brother actually has it worse than me (and is healthy) but there’s that possible connective tissue connection. I’m wonder about the blood vessels….
Please what are these abreviations stand for?
ME and CFS.
Thanks
muba –
Myalgic Encephalomyelitis
Chronic Fatigue Syndrome
I read and enjoyed “Through the Shadowlands” last year; Has Julie Rehmeyer shared her story regarding the diagnosis and surgery? Has her condition improved as a result?
– Thank you
That is a wonderful book! She videoshared in Nov of last year on her Facebook account
https://www.facebook.com/julierehmeyerauthor/videos/656580104872036
and has been sharing on and off since then. She had the whole deal…
Just want to point out that there is a German book from 2010 pointing out the connection between the instability and ME/CFS in SOME cases plus saying an operation sometimes helps but only as a last resort.
I don’t want to discredit Jeff’s work. Just want to point out it was known before 2018.
https://www.amazon.de/Schwachstelle-Genick-Auswirkungen-erfolgreiche-Therapie/dp/3899010752
Cheers
Ben T.
Great find, Ben. I have not read this book and can’t speak to its contents overall, such as whether it discusses the craniocervical junction (which includes the skull). But from what is publicly available through Amazon’s preview, I’m seeing the authors describe the systemic impact of neck instability. This is an important and relevant concept. Thanks for the link.
Hi –
I learned about a doctor and article he wrote re: cervical vertebrae and fibromyalgia. It was an interesting read, because he described at a conference, I think it was a surgeon who had nothing to do with FMS, made the presentation on the connection. I can’t remember if instability was the specific finding.
I can’t remember the details unfortunately and I can’t seem to find it.
I may have learned of this doctor in the forums archives.
Some had surgery, some had physical therapy, and it worked in addressing FMS symptoms.
If you google C1/C2 fibromyalgia, there’s stuff that comes up.
It seems compression too
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2200733/
I hope this helps you advance the cause for considering evaluating the neck and cranial junction in people labeled with clinical diagnoses of FMS/ME/CFS!
It may have been slipped vertebrae?
Which – herniated disks can result from spinal instability, and doctors don’t have a clue and they operate the disc as opposed to treating the instability.
Good luck raising more awareness for this issue and connections!
Hi Meirav,
Yes! There has been some research demonstrating a connection between these structural issues and fibromyalgia.
This study of 270 patients with fibromyalgia found that 46% had cervical spinal stenosis, and 20% had chiari malformation:
https://link.springer.com/article/10.1007/s00586-004-0672-x
This study found that 71% had cervical spinal cord compression:
https://www.sciencedirect.com/science/article/abs/pii/S1526590008004379
Jeff – that was him!
The author of the second study, Dr. Andrew J. Holman
Found it!
Him retelling how he came around to FMS=structural basis:
http://www.positionalcordcompression.com/images/PacificRheumAssoc_PC3_2012.pdf
These are other papers he wrote listed here
http://www.pacificrheumatology.com/presentationsandpublications.html
(interesting, one in a book edited by Dr. Hakim, and Prof. Grahame…. )
I think it’s important to stress that hypermobility is not the same as instability. You can have one without the other. And the problem seems to be most likely instability – in the neck, spine and other joints.
There are people with great range of motion in their joints who are in control their movement. With instability, you are not. Sometimes not visible until you apply forces (standing MRI vs laying down, me attempting to cut meat with fork and knife, etc).
There does seem to be plenty of medical literature to back up
doing structural investigations. What does it take for this to go into the official medical guidelines, I wonder?
Is there an English version of this?
I would ask whether craniocervical instability is the cause of ME.CFS —or the effect. Nonetheless; it is always a good day when we learn of good news emanating from treatment.
i have spinal cord issues but does anybody know if there is an upright mri or what do you need, an upright fmri in belgium? And a good reliable neurosurgeon? thanks
I recommend you look at Jeff Wood’s website MEchanicalbasis.org for information on neurosurgeons specialized in treating CCI & related disorders in the EDS & ME population. There are very few. There are also neurosurgeons not on Jeff’s list who are helping people like us, some who were once on his list; I don’t know why he has removed them (perhaps at the surgeon’s request?).
Another possible source, with many European patients, is Jen Brea’s Facebook group “ME/CFS + Brain and Spine”. It’s a closed group that has become very popular so it may take a few weeks before she grants you access to the group, but it’s well worth joining if you have M/CFS & want to pursue these spinal issues.
Dr Gilete on Jeff’s website has helped many ME/CFS patients with CCI/AAI. He’s located in Barcelona. I’ve not heard of any ME or EDS “literate” neurosurgeons in Belgium yet. The field is growing, although I think it’s a steep learning curve for these surgeons. They have to not only have excellent surgical skills but also understand the many severe comorbidities that accompany ME/CFS, such as POTS and MCAS.
Good luck with your search for answers.
I couldn’t read the whole blog post but just wanted to say that I met Jeff a couple times when he came to my house while I was on Ativan. The first time he came to watch Dr Bolognese examine me (and wind up determining that this was not the cause of my illness). The second time he came just to help translate my pantomiming and be a friend. And he lives several hours drive away.
He’s a really sincere, good, kind man. That’s basically all I wanted to say from someone who has met him in person. He’s extremely empathetic and intelligent. It doesn’t surprise me that he figured out so much on his own.
Whitney, thank you for this. I enjoyed spending time with you, working on your playlist. I’m glad to know you — especially your sense of humor and sense of purpose. You mean so much to our community.
Hi Whitney,
It’s really good to see you out and about! I think you’re a very talented communicator and am in awe when reading the pieces you release through the OMF…
Tracey 🙂
Jeff, Thanks for sharing! You are very persistent.
I met someone whose son had a chairi malformation corrected and improved his ME in 2005. It would be interesting to know how people getting these surgeries back then are doing now. It would also be interesting to see if it didn’t improve their ME, if they had TC or additional issues that still need correcting but have been missed. If you would like to explore further back, I wonder if Dr Alan Pocinki might be able to connect you with others?
I’m glad you are doing well!
Hi Kellyann,
Thanks!
Many people have more than one structural problem, as you noted. It’s important to observe how people do over time, as the years go by after neurosurgery.
Thank you for sharing! Histamine intolerance was my reason for being ill with ME and POTS for almost fifteen years. I have had histamine issues all my life, and finally got seriously ill. A webinar about MACS opened my eyes, and I found out that I had high Histamine levels because of genetic low Diamin Oxidase level. After histamine_restricted diet and treatment with H1 and H2 antagonists, I have recovered and have a new life!
It is so important not to give up!
Can you please describe how you felt ? Id have high histamin also but im not sure how to go about it.Thanks
Hi Fanny,
I do have issues with histamine and wondered whether you’d come across this article by Healthline on Histamine Intolerance?
https://www.healthline.com/health/histamine-intolerance
I know it’s a bit of a basic discussion of the topic and you may know all this already but I think it discusses the main areas. I have had and still do have difficulties with histamine – mainly related to food. For me it’s been a fairly complex process trying to work things out.
I do take 10mg of Cetirizine, an antihistamine daily, at the moment but I phase them in and out as I think I need them. My symptoms have changed over the years and sometimes, just as I’ve sorted something, another symptom pops up! Things are fairly calm at the moment.
Very interesting indeed! Histamines has been a big eye-opener for me as well recently. Trying out several options but have not landed on the best regimen for me yet. Could you please mention specific products you have used? H2 in particular.
The Mastocytosis Society has a wealth of information about treatments for MCAD. It’s also just a great resource for learning more about mast cell disease in general.
https://tmsforacure.org/treatments-2/
Thanks Jeff, that’s a very useful article on mast cell issues. I have to be very careful with medications, especially ibuprofen, as it sets my heart off. I used to be terrified of trying anything but I have a better idea now, of what’s probably okay and what’s not.
Are you saying Jeff that essentially we just have you who has a complete ME remission at this point, Jen who is sick again after unfortunately getting Covid and Julie who is currently recovering from surgery? Plus the 3 women from Johns Hopkins?
I’ve had cervical stenosis surgery C4-C7 plus decompression with no improvement, in fact worsening symptoms. To keep my appointment with Dr. Patel will mean a grueling trip. I’m afraid of traction so Dr. B is out. So I believe I will need to send my films overseas to Dr. G unless you now know of someone else who is doing distant diagnosis. So happy you’ve gotten well, Jeff!
Hi Esther,
There have been quite a few ME remissions following these surgeries. It’s not universal, but for those who have had access to follow up care, to address further problems, many have improved or gone into remission.
I noticed you mentioned Jen’s experience in your comment. She did have COVID. But, fortunately, she has not relapsed with ME. She remains in remission.
I have yet to know anyone to go into remission following cervical stenosis surgery alone (beyond those in the Peter Rowe paper). Most of us have more than one underlying pathology. In my own case, as just one example: I had a tethered spinal cord in addition to CCI.
I wish you luck as you explore follow up care.
I’ve read a lot about Jeff Wood’s breakthrough surgery and his emphasis that ME does’t mean you have this problem. For a while, everyone with ME was rushing in, believing this would cure them, too. Thank you for featuring him in your blog.His observations were very informative. I was also glad to see a comment by Whitney Defoe, another person I admire so much. I knew he was examined to see if this operation would help him but never knew the answer to that question until now.
And Cort…you have a twin? I learned something else new.
Peace and love.
They weren’t rushing into CCI looking for a cure. But rather to check and eliminate a possible underlying pathology.
Some interesting points but speaking about protecting each other and sharing facts.
Why isn’t the fact that those who didn’t improve, relapsed or became worse altogether mentioned in this article?
Isn’t that part of protecting the community as well?
The purpose of this editorial was to clear up the misconception that neurosurgery was being offered based on ME symptoms alone. This piece was not about neurosurgical outcomes, whether positive or negative.
That aside, you’ve brought up an important consideration, Anil. Tracking neurosurgical outcomes is crucial. Many of us in the community, including myself, are paying close attention to outcomes.
So far, over the last 2.5 years, a pattern has emerged: Most of us — nearly all of us — have more than one structural problem. In my own case, I had both CCI and a tethered spinal cord. So did Jen Brea, Julie Rehmeyer, and many others. Each structural problem will need to be addressed for someone to have a chance to become healthy – and to not relapse or become worse.
I had my tethered cord surgery 6 months after my fusion surgery. Had I not been able to access follow up care, with a specialist who recognized tethered cord, I would have appeared to relapse, when there was simply an additional structural problem that needed to be addressed. Julie went through a nearly identical experience. She had a tethered cord surgery several months after her fusion.
You noted correctly, Anil, that not everyone has improved. There are no guarantees with any surgery. But again, the people with the best outcomes have had access to follow up care, with the opportunity to have each issue addressed in a timely manner.
Who did your tethered chord surgery?
Good point Anil. Dr. Bolognese has ruined many patient’s health, at least according to these reviews:
https://www.vitals.com/doctors/Dr_Paolo_Bolognese/reviews
And he’s been involved in many lawsuits as well.
Thank you for you continued advocacy, Jeff. In 2015 I had developed IIH and fibromyalgia, though I believe it’s ME/CFS. During an MRI they discovered serious spinal stenosis, so I had a cervical fusion C5, C6, C7. My improvement brought me from being unable to work or drive to being able to work part time. I’m still sick, and through the stories if you and Jen Brea I believe that tethered cord is an issue that’s preventing my recovery. I didn’t go out seeking neurosurgery, it was a coincidence!
Hi Sara,
Glad to hear that you improved after your C5-C7 fusion surgery. Your experience is pretty consistent with the ME patients in Peter Rowe’s article: “Improvement of severe myalgic encephalomyelitis/chronic fatigue syndrome symptoms following surgical treatment of cervical spinal stenosis”
https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-018-1397-7
Thanks for sharing your experience!
I take the opportunity to bring up that pectus excavatum/carinatum are seen in two inherited metabolic disorders that have a overlapping features with hEDS:
Hypophosphatasia
and
Classical Homocystinuria
(which is also a differential diagnosis for Marfan)
as well as other types of homocystinurias
Hypophosphatasia can also present with Chiari, intracranial hypertension…
There are other overlapping symptoms,
fatigue and muscle issues included.
These disorder have a clear diagnostic markers and molecular basis, while hEDS remains a clinical diagnosis for now.
It’s worth to look into those as well, in my opinion. Rule out/confirm.
I posted on a thread about HPP, what it is and how to go on about checking if one has the markers.
I will do one on homocystinurias/methylation/remethylation disorders
(this is not the same as having an MTFHR polymorphism and the information that circulates around the nets…)
Cheers!
where do we start to find a Dr. who can diagnose CCI? joy kaye especially in chicago area?
Myalgic Encephalomyelitis = painful inflammation of the brain and spinal cord. It makes sense that inflammation in that tight space would impact brain signals for multiple organ systems and perhaps create years of cascading debilitation. A structural problem could do the same.There’s no reason it can’t be both. Wouldn’t it be great if the kind of extensive work-up necessary to determine if a mechanical problem may be contributing were available to all with a diagnosis of ME.
I was thinking along the same lines as you Carollynn. Many people with ME/CFS currently receive sparse attention from the medical profession, apart from a leaning towards the false beliefs evaluation.
I was thinking myself, what a different experience it would be, as a patient, if ME/CFS was on the drop down menu of conditions when doctors were making their assessments and diagnosis.
I believe the lack of acknowledgement of my alarming symptoms meant I lived in a state of exile, resulting in me feeling cut off from emotional support and adequate healthcare. Essentially my condition deteriorated, as my stress levels soared.
It was only because I found help and support online, and had the confidence to put sensible ideas into practice that I’ve improved.
ME is caused by an enterovirus. Until the definition of polio got changed on 1954, it was known as superior polio (Wickman), also called atypical or aborted polio. If surgery cured your symptoms, you didn’t have ME.
I think the real issue is the diagnosis of ME/CFS. For the moment it’s a dustbin diagnosis. Doctors test 3 things (sometimes less), and if they come back normal, then there is nothing serious, therefore it is ME/CFS. That is the reasoning. I remember a study of perhaps 20 years ago that showed that around 50% of patients diagnosed with ME/CFS actually had other things (MS, hepatitis C, celiac disease, tertiary syphilis, ankylosing polyarthritis, etc.) Sometimes entirely treatable. It is more than time to define a proper list of exclusion diseases, so that people with craniocervical instability or leaks of spinal fluid, just to name a few, can be treated and return to a normal life. Once they are gone researcher will have a more homogeneous population, and therefore will have a greater chance of finding what is really ME and what it does to the body. It will save money on the long run.
Dear Jeff
Can injury lead to these kind of conditions? I had two whiplash injuries only a week apart from one another, and then contracted viral meningitis a few weeks after these, probably because I was vulnerable in this area from these neck injuries. My M.E was acute (rather than gradual) from this meningitis, but I wonder now from reading your article if these neck injuries are a factor..? Thanks in advance if you can give any insight!
Hi Christina,
Yes, impact trauma can trigger this, especially neck injuries like whiplash. Those are known to impact the ligaments of the skull and cervical spine, sometimes damaging them.
Impact trauma is one of the more common triggers of ME, in addition to viruses and others. I wrote more about these common on the Mechanical Paradigm page of my website:
https://www.mechanicalbasis.org/mechanical-paradigm.html
Hi Jeff,
I was so interested to see the article you highlighted ‘Stress, the Autonomic Nervous System, and the Immune Kynurenine Pathway in the Etiology of Depression.’ I see one of their references is RS Smith. Years ago I found ‘Cytokines and Depression: How Your Immune System Causes Depression’ by Ronald S. Smith. This was long before I’d heard of ME/CFS. Unfortunately Ronald Smith never published it because he died suddenly. I emailed him, unaware he’d died and his son replied saying that he’d made his father’s work available online.
My immune system is very highly strung, ready to react at a moments notice. I just try to not wind it up. I have experienced most of the triggers and come from an atopic family – who have various immune issues.
I have a mild pectus excavatum and only realised because my son has it too. I also fell from a height when I was a toddler and was unconscious for hours. I had an xray on my neck, (in my early 20’s or so) because it was sore and I was told that a number of my bones were fused. I presume that was from the earlier accident.
Anyway, I’m functioning fairly well now due to a lot of research and trial and error. However despite this, I still believe I’m working around some sort of dysfunction somewhere – I’m just not sure where that is…
Thanks for sharing your experience and insights.
Hi Friends-
Just a reminder that many folks with EDS and usually POTS/MCAS fill criteria for ME/CFS but do not have this diagnosis. And many have CCI and
some have had cervical Fusions, some with great success, some not.
I think there is a video lecture by Dr Henderson on the Mepedia CCI page about a 5 year study of these patients.
One thing that hasn’t been tied into CCI and ME/CFS is autoimmune diseases. While CCI has a well documented connection with systemic lupus since it nearly always causes connective tissue issues, I am fairly certain it may also have a correlation with other A.I. diseases. For example, Crohn’s, which is what I have.
Crohn’s almost always has ‘extraintestinal manifestations (EIMs)’, basically, this is the body attacking itself in areas that are totally unrelated to the gut. The most common target are joints, which is why so many Crohns sufferers have joint problems (almost half of us have this in one form or another).
Coincidentally, about 50% of Crohn’s sufferers have ‘life changing fatigue’ in spite of having complete remission of gut issues.
There are lots of studies suggesting gut issues cause fatigue, but maybe the connection isn’t a direct cause/effect. Maybe it’s that gut AI diseases are very likely to have joint AI diseases that develop alongside, and it’s these connective tissue diseases that can lead to CCI, which lead to fatigue.
Just a thought
It’s not just CCI. People have reported recovery after treating undiagnosed bone infection or metal poisoning. But I suspect these ME-like cases are very few. Vast majority of cases probably are straight hypersensitization to exertion without anything pinching their homeostatic system.
That said, I’d agree 200% that people shouldn’t leave stone unturned to preclude any underlying condition that could cause their ME-like symptoms complete with PEM. You’d feel foolish to find that you had somethg simple as chromatosis or something after whining that your life was over for years.
I read Jeff’s story and I also remember Dr Jarred Younger’s study on brain inflammation.
So essentially we have patients who one day have an infection with high fever. Most recover, but some don’t and end up with ME/CFS. Could it be that the infection leads to temporary brain inflammation, but that in some predisposed patients with weak ligaments the position of the head slightly move?
Inflammation may affect the weight of some areas in the brain, and because of this the head “sits” slightly differently on the neck. Before infection happened the head would sit fine with ligaments that grew as a child became an adult. But all of a sudden as infection rages, the head no longer sits in the position ligaments can cope with. Because these ligaments are weak the head moves downwards by gravity. As this happens inflammation in that compressed area gets worse leading to some further weight shifts that ligaments are unable to cope with.
That would explain why the situation keeps deteriorating in these patients. It would also explain all these cases of ME triggered by an accident (fall/car crash). The head is no longer in its optimal position (that is, the position ligaments can maintain), and ME starts. It would also explain why in some families there are several cases; ie. a genetic predisposition for weaker ligaments.
Isa, you might find these valuable:
https://www.youtube.com/watch?v=Or-67usWrqQ
The presenter specialises in prolotherapy to weak neck ligaments.
https://www.youtube.com/watch?v=ykeK6X52vaU&t=1793s
Fraser Henderson is a well known neurosurgeon with interests in this area. Both he and Dr Hauser are working with specialist chiropractors- so there is quite a range of options other than major fusion- unless you are seriously debilitated. (Im thinking of Jennifer here).
However the real emphasis here is that one the problem gets established it will cause dysautonomia ( and a downstream immune system imbalance). The gut issues from the dysautonomia worsen digestion and compromise ligament strength through nutritional issues.
So we may be looking at a complex feedback system.
The genetic predisposition for weaker ligaments also interests me- how do we minimise that?
One line of enquiry that i have seen looks at glyphosate (roundup) in our diet- causing glycine- glyphosate substitutions in many of our proteins. Glycine is a key building block for collagen. Naturally, this is not an easy problem to address.
Jeff/Cort,
Thanks for this succinct and sensible article.
Where is the best place online to guide one through an initial self-screening for these structural problems? Or is it the case that symptoms alone are unreliable indicators? In that case, does anyone know where/how to get screened by a specialist in Canada?
Another question: Has anyone considered the possibility that the ME remission might by a happy by-product of the surgeries rather than their direct result? i.e. even if the structural problems were NOT causing the full extent of ME symptoms, the surgeries somehow provide a system reset that produces remission
I read Jeff’s website. He explains that prior to surgery he had a sort of frame to hold his head. That alone gave relief. That was done in order to assess in advance the potential usefulness of surgery. It is because the frame was giving promising result that surgery was subsequently done. That said, surgery per se may give an additional effect too.
ME/CFS happens in epidemic form as well as sporadic form so it is nothing to do with cranial neck stuff.
What if an infection caused the body to attack the connective tissues and those ligaments? Much of craniocervical instability is idiopathic – they don’t know why it happens.
We could imagine that at least for some epidemic forms the relative genetic proximity of the population may explain these cases. It was and still is quite common for families to live nearby and stay there their entire live. Jeff insists on the fact that cervicocranial instability only affects a tiny group of ME/CFS patients, and his findings are not to be extrapolated to the entire ME population.
Hi Isa,
Thanks for the thoughtful engagement. I’d like to clarify one point. You wrote: “Jeff insists on the fact that cervicocranial instability only affects a tiny group of ME/CFS patients, and his findings are not to be extrapolated to the entire ME population.” I haven’t quite said that, though I can see how I might have come across that way.
What I have insisted is this: We don’t yet know how prevalent this is in the ME population. I’m leaving the issue of prevalence open, as an active question, to be answered by further research.
I appreciate your astute observation about the ME outbreaks. There is much to learn from the outbreaks, and you raised the possibility of genetic proximity. I have thought along those same lines for a while. It sometimes takes an “environmental hit,” such as a virus or mold exposure, to cause a genetically-vulnerable person to become ill with ME.
Interestingly, there does seem to be a genetic component to these structural neurological issues, as well. You will often see CCI, tethered cord, Chiari, etc running in families, through the generations. Many of these families have a genetic connective tissue disorder, and quite a few of these people go on to develop ME after a virus or mold exposure.
Hi Jeff,
Thanks for clarifying. 🙂
ME/cfs attacked me with approx. 30 total collapsed. Dr. Patricia Salvado, in Houston brought me from total collapse in 2009 — with an ATP level of eleven — to remission and ATP of 23 in just 6 years. In 2016 I underwent a 5 level cervical fusion.
Hello Mr. Jeff! We are many that are happy and grateful for both yours and Jennifer’s remission story, and for the information you provides in those important medical subjects. However, one thing remains a mystery for us all that have followed both your stories, is the fact that both of you haven’t shared your thoughts on WHY/HOW you think your CCI surgery manage to get your POTS, CFS/ME and PEM’s to go in remission. We are hundreds of people that are wondering this and we all would really like to get your reply on that. Thank you so much in advance and we wish you both a healthy future! ❤️