The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

Sly Saint said:
so there is some data.
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To add to what JenB said:

The person who did the "pre-test" was told to "come back again after your surgery when you are fully healthy." The study team told them this when they went in for the pre-test, ahead of their fusion.

Given the amount of bias openly expressed by the people conducting the study, I would not trust their results in the least.
 
Michiel Tack said:
What I find worrying is that ME/CFS patients diagnosed with CCI are apparently told that it is degenerative and that they will eventually (in the not too distant future it seems) die from it. This Dutch article forms an example: https://www.ad.nl/binnenland/eline-...tgenoten-nog-mooi-leven-te-bezorgen~a8136b8b/
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Can someone point to the bit that says this either in Dutch or translated?
Is someone in London involved.
I may be able to make a complaint to a disciplinary body.
 
Jonathan Edwards said:
Can someone point to the bit that says this either in Dutch or translated?
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As far as I'm aware patients aren't being told by any of these docs that they might die. It's something some patients think might happen. Or is the explanation for the fact that some severe ME patients die. Not sure what it's based on.
 
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Gosh, the article by Dutch newspaper AD is a tricky one.

It does not use the word degenerative ("degeneratief"), nor does it explicitly describe CCI as degenerative. In fact, it doesn't use the term CCI at all, speaking only of "neck instability" ("nekinstabiliteit"). The article strongly suggests that this neck instability and Eline's declining health are linked. Whether medical practitioners have told her she will eventually die from (complications of?) neck instability, or whether this is her own interpretation, is left fuzzy. These are the pertinent paragraphs:

1.
"Toen kwam het idee om een Upright MRI te laten maken. Een verticale in plaats van een horizontale scan, zodat ze de druk op de wervels kunnen zien. Omdat ze die in Nederland wegbezuinigd hebben, moest ik ervoor naar Londen. Eigenlijk wilde ik met die MRI dingen uitsluiten. Maar de radioloog liet direct doorschemeren dat ik waarschijnlijk nekinstabiliteit had. [...] Om de achteruitgang te stoppen, zou ik geopereerd moeten worden."

Trans: The idea arose to have an Upright MRI done. [This is] a vertical rather than a horizontal scan, to identify pressure on the vertebrae. Because budget cuts have made such scans unavailable in Netherlands, I had to travel to London. I had hoped the MRI would rule out things [certain diagnoses]. But the radiologist immediately suggested that I probably suffered from neck instability. [...] To halt the decline, I would have to have surgery.

2.
,,Helaas werd de diagnose bevestigd door een neurochirurg in Barcelona. Hij is de enige in Europa die deze operatie uit kan voeren bij mensen die ook andere aandoeningen hebben. Maar ik heb er zo veel, dat hij het bij mij niet aandurft. ‘Dan kom je niet meer van die tafel af en ik wil je niet de dood injagen’, zei hij."

Trans: Unfortunately, a Barcelona neurosurgeon confirmed the diagnosis. He's the only neurosurgeon in Europe capable of performing such surgery on patients with co-morbidities. But I have so many co-morbidies, that he's not willing to take the risk. 'You wouldn't get off that [surgery?] table again and I don't want to condemn you to certain death', he said.

3.
"Doordat een operatie er niet inzit en ik steeds verder achteruit ga, kom ik uiteindelijk te overlijden. Een prognose heb ik niet gekregen. Aan de ene kant zou een richtlijn wel fijn zijn. Aan de andere kant vraag ik me af of ik dat echt zou willen weten.”

Trans: Because surgery is not on the cards [due to risk of complications] and because my health is declining, I will ultimately die. I have not received an [official] prognosis. On the one hand, a guideline would be nice. On the other hand, I might not want to know.

I'm not entirely sure what Eline means by "guideline". Official protocols and paperwork from the Dutch government regarding neck instability, perhaps. She doesn't elaborate, or if she did, the article author didn't include it.

4.
Then finally, there's this paragraph, talking about a fellow patient (Marleen):
"Door haar nekwervel-aandoening komt Marleen bijna niet meer uit bed. Als ze niks doet, komt ze te overlijden."

Trans: As a result of her vertebrae-condition, Marleen is largely bedbound. If she takes no action, she will pass away.

This seems to be the interpretation of the article's author, perhaps parroting what Eline told him. I assume the author means "if no action is taken", since Marleen is reportedly mostly bedbound.

Native speaker of Dutch, by the way.
 
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Jonathan Edwards said:
Can someone point to the bit that says this either in Dutch or translated?
Is someone in London involved.
I may be able to make a complaint to a disciplinary body.
Click to expand...
To clarify: the article doesn't say that doctors have told ME/CFS patients that they will die because of CCI, that was an assumption on my part.

In the article, Eline, an ME/CFS patient diagnosed with neck instability in Londen and Barcelona says she is convinced she is going to die because she can't have surgery. She says (translated from Dutch): "Because an operation is not possible and I'm getting worse and worse, I will end up dying.."

She now wants to help patients in the same situation who are eligible to have surgery. One of these persons is Marleen and introduced by the article as follows (translated from Dutch)

"Because of her cervical vertebra disorder Marleen hardly gets out of bed anymore. If she doesn't do anything, she will die. That's why she has set her mind on an operation in Spain. This is a risky operation. But if all goes well, it will improve my quality of life. I will suffer less from shortness of breath and dropout symptoms."
​

It's possible that the belief that patients are going to die if they don't have surgery is due to their comorbid conditions or that the person in Londen and the one in Barcelona haven't said anything like this to them.

But to me, the fact that these patients seem so convinced that they will die without surgery, suggests that someone with medical authority is telling them so. I think I have seen similar statements in fundraisers of ME/CFS patients for CCI surgery.
 
These claims have been around long before the ME CCI wave.

There have been national headlines, introducing individual patients stories, some of which claim that the affected individuals’ necks are unstable and that these victims risk rapidly worsening disability, or even death, if not urgently treated. Funds are raised for surgical treatment overseas, on the basis that the NHS is unable to
provide this treatment. It is certainly understandable that patients would become very concerned if this were the truth and if these risks were indeed real
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A genuinely unstable cra-
nio-cervical junction does threaten the patient with the develop-
ment of major neurological disability, or even death. In such
circumstances stabilization is required, urgently. Hypermobility
may generate pain arising from the affected skeletal elements and
may even cause intermittent neurological symptoms but affected individuals are not at immediate risk of death or sudden, severe
neurological deterioration. Patients are, after all, very likely to
have been living with the condition for some time. Treatment,
including surgical intervention, is rarely indicated as an emer-
gency. In the context of EDS and the craniocervical junction, use
of the term ‘hypermobile’, rather than ‘unstable’, is less likely to
cause unwarranted alarm amongst the patient population.
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The whole article translated into English:
Eline (28) from Apeldoorn has already resigned herself to death: 'In this way I hope to give fellow sufferers a good life'
Because Eline van der Wal (28) has a lot of underlying suffering in addition to neck instability, she can no longer be cured herself. However, her heart is in the right place. Because the Apeldoornse is now in the breach for fellow sufferers who can still undergo a life-saving operation.


“The misery started when I was thirteen. In the winter, I had the flu for two months. That is of course not normal. I also passed out regularly. Eventually I did recover. But I continued to have low blood pressure. I didn't get really fit anymore. ”

Puzzle
“In the following year I also got a lot of pain in my stomach. Even in the hospital they did not find out what it was. I eventually went to an alternative doctor. He put me on a diet. I was no longer allowed to eat and drink certain things. Like milk, of which I previously took a liter a day, so to speak. That made it seem under control. ”

“In May 2008 I started to suffer from stomach pain again. A stricter diet did not help. I also kept getting very tired. That summer I was on holiday in the South of France, where I celebrated my sixteenth birthday, sleeping on the beach for two weeks. Very strange. Once back we ended up at the Wilhelmina Children's Hospital in Utrecht. There they diagnosed CFS (Chronic Fatigue Syndrome, ed.) And chronic abdominal pain. ”


Sometimes my father had to carry me to bed like a little child. I was that tired

Eline van der Wal
“A lot of time has been lost in those years. I could not finish the atheneum. But thanks to my perseverance, I did get my MBO diploma. Cognitively it was. Not physically. When I got home from school, I had a plate of food and then I went to bed. Sometimes my dad had to carry me to bed like a little kid. I was that tired. ”

Complaints worsened
Complaints worsened
“I did study pedagogy. At a certain point that was impossible to do. In my third year, I was supposed to do an internship for four days and go to school for another day. After almost two months I collapsed to such an extent that I ended up in bed completely. ”

“The complaints also got worse. Not only was I tired, I was also in so much pain.
Couldn't stand light and sound anymore. Had trouble breathing. Regularly passed out and suffered from spasms. I even had to be helped to eat often. ”

Less hope
“Then the idea came to have an Upright MRI made. A vertical instead of a horizontal scan so they can see the pressure on the vertebrae. Because they cut them in the Netherlands, I had to go to London for it. Actually, I wanted to rule out things with that MRI. But the radiologist immediately hinted that I probably had neck instability. ”

“I would have to undergo surgery to stop the deterioration. Then they fix vertebrae in your neck and you lose all or most of the ability to move. That gave less hope for an ordinary future. And I also wanted to work, get out of home and have children. I then had to adjust those expectations. ”


"Then you won't get off that table and I don't want to kill you," said the doctor

Eline van der Wal
Unfortunately, the diagnosis was confirmed by a neurosurgeon in Barcelona. He is the only one in Europe who can perform this operation on people who also have other conditions. But I have so many that he doesn't dare to do it with me. "Then you won't get off that table and I don't want to kill you," he said. ”

“Because an operation is not possible and I continue to deteriorate, I eventually die. I have not received a forecast. On the one hand, a guideline would be nice. On the other hand, I wonder if I would really like to know. ”



My life was anything but spectacular. Very boring actually. But I think that's totally fine.

Eline van der Wal
“It may sound crazy, but I still had a good life. I have parents and a little brother who love me and have experienced beautiful things. My life was anything but spectacular. Very boring actually. But I think that's totally fine. Some memories are priceless for me: like sitting on a bike very early in the morning, sitting by a fire with people, spending a day at the beach and being busy in the garden. ”



© Kevin Hagens
Completely overwhelmed
“And little things still make me very happy. I also think you learn that when you get sick at a young age. This way I can really enjoy sitting outside with my father and see the flowers and bees in the garden. And recently on my 28th birthday I was completely overwhelmed by the large number of cards. It made me feel very happy and loved. ”

“I also cherish the friendships I have built up with fellow sufferers. They are still eligible for the operation in Barcelona. It costs a total of 130,000 euros alone. I can't organize an event or day for them to raise that money. I can, however, draw attention to their donation campaigns. It's not about me now. My life was perfect and I resigned myself to dying. But I would still like to contribute in this way to ensure that they still have the best possible life. ”

'Very special that Eline does this'

Two fellow sufferers for whom Eline asks for attention are Celeste (26) from Dronten and Marleen (26) from Zutphen. "I think it is quite clever that Eline dares to do that and it is very special that she wants to help those who can still be helped", says the latter.

Marleen hardly gets out of bed because of her cervical vertebra disorder. If she doesn't act, she will die. That is why she has set her sights on an intervention in Spain. “That is a risky operation. But if everything goes well, it will improve my quality of life. I will suffer less from shortness of breath and symptoms of failure. ”

Such an operation is not reimbursed by Dutch insurers, while altogether it costs about 130,000 euros. "Because the ambulance flight and the stay there also have to be paid." Since she does not have that money herself, the Hope for Marleen Foundation was established. More than 34,000 euros has already been received. “But actually the money has to be received within 1 to 2 months. The last month and a half I have deteriorated very fast. ”
 
Diluted-biscuit said:
It’s quite a confusing narrative, I wonder if it’s clearer in the original language?
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It's no clearer in the original language (Dutch), most likely because the main article is effectively one long citation that seems to use the literal spoken or written words of Eline.

Trish said:
It looks like the article is mixing up the stories of several individuals.
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The article's gray-box inset at the bottom briefly touches upon the experiences of fellow patient Marleen. It quotes Marleen, who is raising funds for surgery in Spain.
 
Mij said:
I don't like to bring Mattie into this thread because he is no longer a member here and I want to respect his privacy. Is his experience being shared on these private and public social platforms? He has been very honest and open about his placebo effect on PR and his story needs be told.
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He was very transparent about his experience - very kind of him. I was quite sad for him.


InitialConditions said:
I've seen several in the MESpine Facebook group, some of whom have got worse. A common theme is for them to blame the lack of progress or worsening on something else - usually tethered cord.
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I had structural issues in C-spine and had ACDF. Was quite aware before the surgery that I had symptoms similar to tethered cord. Surgeon wants to eval for OTC, but I am not going through another surgery unless it is life or death. It took many months to recover - more than twice as long as I was told the recovery would be. I had such instability that my spinal cord was being compressed on flexion and extension. I want to be clear again that I would have the surgery again, but it was NOT at all a cure for all of my problems. It was damage control and my intuition said that even though the surgeon said I would make significant improvements. It was suggested to me that maybe my surgeon "missed" CCI/AAI. No way would I consider surgery for it unless my life were in danger and I'm not convinced I would do it then.
 
The title of this thread has been changed from
Concerns about craniocervical instability surgery in ME/CFS to
The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread
This is because we would like to make it clearer that this is a thread for the discussion of the science of the various spinal issues.

The thread for discussion about how ideas related to spinal issues and ME are being disseminated in social media and elsewhere is
Structural spinal problems and ME - blogs and social media
 
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On Jeff’s website, I think this is new, about surgery outcomes:

“We don't yet know exactly how many people with ME may have CCI or other structural issues as the mechanism underlying their illness. At this point, we do know that in the time since I first shared my story publicly, back in 2018, many people with ME have pursued neurosurgical evaluations and have subsequently been diagnosed with structural conditions. There have now been over 64 CCI diagnoses, 53 AAI diagnoses, 24 cervical stenosis diagnoses, and 14 Chiari diagnoses, and 28 tethered cord diagnoses.

Of course, there are no guarantees in life, let alone in neurosurgery. That said, most of us who have had surgery have either gone into complete remission or significantly improved. Others have chosen to address their CCI/AAI via regenerative medicine, rather than neurosurgery, and some of them have also improved.

Many of us have found that we have more than one neurosurgical issue, and that we will need follow up care. In my own case, as just one example, I had a tethered cord release six months after my fusion surgery.”

https://www.mechanicalbasis.org/about.html
 
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Michiel Tack said:
What I find worrying is that ME/CFS patients diagnosed with CCI are apparently told that it is degenerative and that they will eventually (in the not too distant future it seems) die from it. This Dutch article forms an example: https://www.ad.nl/binnenland/eline-...tgenoten-nog-mooi-leven-te-bezorgen~a8136b8b/
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Here's another Dutch article that reads (translated with Deepl):

"The euthanasia declaration is already ready. Anne ... from Boxmeer set it up a year ago, because because of her condition CCI/AAI she goes 'a nasty long way to death'. She doesn't want that."
https://www.gelderlander.nl/ede/eva...-euthanasieverklaring-ligt-al-klaar~ae54260a/
 
soti said:
I mean... the science of CCI and other diagnoses is available on pubmed.
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Can you point me towards the publication where all the measurements the surgeons who diagnose these conditions use (including CXA), have been shown in a blinded/non biased study to be different in CCI, compared to healthy controls. Just because something is published (eg the Bragee study which has problems with recruitment bias as well as no controls or blinding), doesn’t mean it tells us much.

Also can you point me towards the publications where there’s a dose dependent traction trial at the very least on CCI patients. So far we know traction works only because patients are saying it does & the surgeon does it. We can also say the same in many other purported treatments of ME & other conditions. The point of science is to make sure the evidence gathered is rigorous.

Without either of these, why are surgeons using both traction and these novel measurements to aid in diagnosis?

I’ve pointed out in another thread that these surgeons are not without controversy, and people have reported receiving diagnoses from them that they do not get from other surgeons, and articles of other doctors/surgeons saying these surgeons are quacks. Which makes this all the more important.
 
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lunarainbows said:
On Jeff’s website, I think this is new, about surgery outcomes:

“We don't yet know exactly how many people with ME may have CCI or other structural issues as the mechanism underlying their illness. At this point, we do know that in the time since I first shared my story publicly, back in 2018, many people with ME have pursued neurosurgical evaluations and have subsequently been diagnosed with structural conditions. There have now been over 64 CCI diagnoses, 53 AAI diagnoses, 24 cervical stenosis diagnoses, and 14 Chiari diagnoses, and 28 tethered cord diagnoses.

Of course, there are no guarantees in life, let alone in neurosurgery. That said, most of us who have had surgery have either gone into complete remission or significantly improved. Others have chosen to address their CCI/AAI via regenerative medicine, rather than neurosurgery, and some of them have also improved.

Many of us have found that we have more than one neurosurgical issue, and that we will need follow up care. In my own case, as just one example, I had a tethered cord release six months after my fusion surgery.”

https://www.mechanicalbasis.org/about.html
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‘Many people with ME’ when referring to a two digit figure strikes me as hyperbole.
 
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