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

Hi Grigor: https://www.s4me.info/threads/meped...acranial-hypertension.9818/page-2#post-187916

Just a note I didn’t get surgery - I didn’t get that far! I have severe M.E, and it caused me a lot of distress because I’m in the UK and essentially there are no avenues to getting this diagnosed or treated other than through private, very expensive means - and on top of that, even if people get it somehow diagnosed - having to travel very far away to another country to have risky surgery.

I made myself very unwell just through researching it all and then just travelling to get the MRI, because I felt I must follow this avenue, following Jeff’s website and Jen’s story. It caused a huge amount of anxiety and ill health when I was desperate, as we all are. I’ve written in the thread why I think those who are advocates should take more responsibility in the way they talk about things especially when there is no research yet into this, except a handful of these surgeons performing surgery. Because we are all desperate and vulnerable patients.

I think there’s a big difference between saying: “I got better, I did this surgery and afterwards I was better, however I don’t know why that is and please wait until there is further research before looking into this”, compared to “I got better, I’m in remission, these are my theories/facts as to why ” and then continuing to write about medical things in this way - which; I’ve mentioned in my other post, many people take as fact and then act on.

 

Thank you for sharing. I'm too ill to get tested so I don't really need to worry about it for myself but I do worry for others!

 

I'm sorry if this post is off topic. It's not about the science or anything, just my thoughts on the way these news has affected me.
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@lunarainbows I relate to your experience so much, except I didn't get an MRI because I would have to go abroad to do that. But I've been extremely distressed thinking about how I would manage that with severe ME, or even afford it. Thank you for sharing your thoughts on this, it has been really helpful to me to know I'm not the only one.

I've been doing horribly mental health wise this entire year because of the hopelessness and anxiety of having to deal with the CCI issue all alone, when there's no health pracitionners in my country to ask.

There's the message of the Lightning Process, CBT and GET treatment of ME, where if you're only strong enough, positive enough, consistent enough - you will cure yourself. It's a huge burden to bear.

But I find biomedical approaches often send that message too (I'm not saying people send that message on purpose): If you're just persistent enough with trying everything, if you see every expert in the world, and if you're just smart enough to figure out which medical pracitioners to trust, like in this case: if you have the ability to figure out which of the CCI surgery options are the best, and somehow have money for all of this - then you can also be cured.

I don't have any medical training or ways to know what information to trust or not. I don't have anyone to consult on medical issues. And being alone with the responsibilty for my illness for so many years, all the gaslighting, and the poor quality of life makes me so vulnerable and desperate.

I agree with you, @lunarainbows, I wish there was more caution when people shared their theories and recovery stories. Especially when it's someone prolific with lot's of influence. It's good and important that they share their stories, I believe, but reminding people about the reality of the situation and the need for more knowledge and research is really important, when we are vulnerable, desperate, and many of us so brainfogged we can barely think.

I'm very grateful to @Jonathan Edwards for sharing his knowledge here. It's so helpful! Thank you

 

Oh rainy.. all of what you’ve said, I felt that 100% too. It has been so, so painful since the CCI issue came out and truthfully over the past months I did become suicidal over it...the whole process, the hopelessness, the anxiety, fearing that I would get worse if I didn’t do surgery, not knowing what to do or who to believe, and also being far too ill to actually do much about it (how on earth would I travel to do surgery, when even travelling to do the MRI, which is less than an hour away, and the noise of the lying down MRI made me so ill I became unable to eat solid food? ).

Yes you are right about that too - the biomedical approaches and the feeling that if you just try hard enough, or are tenacious enough, and have a lot of money you can get there too.

It doesn’t help, I think, that so much of this is coming from the USA, as well as from patients/advocates who have access to certain doctors and specialists.. but again the problem is a lot of what those doctors and specialists say and do and treat are not internationally validated or properly researched either, so that makes it even more distressing. And in other countries, we are alone with our illness.

 

And @rainy it makes me very sad to read how you’ve been feeling. It is a very hard burden to bear. Please know you’re not alone. There are lots of us, including me, who understand <3.

 

I've felt this too! Sending good thoughts to you <3

What has helped me a bit lately is the perspective that for me this isn't about each patient going out on their own to find a cure. We're a lot of people in the same situation, and what I hope for is research and treatment avilable to everyone.

Thank you so much. It really helpes a lot, both the kindness and not feeling alone <3

 

Exactly. The vast majority of people are in this position.

 

Yes. The shared sense of all of us together, who are all in this position with M.E. One day we will all get the answers we need and all of us will be able to get treatment. even if it is very hard until then, we will get there <3

 

Sorry, just to add . . . In thinking about this thread and my post I don't want to seem to come down hard on Jen Brea.

She has done good things in advocacy for ME. And I think she is more sensitive than many others have been about her situation being fortunate for the support and resources she has. I think she recognises the situation this has created and it is as disorienting for her.

But when someone speaks out in public they are what gets heard. There is no way to counter balance that with all of the still quiet voices of the invisible majority and therefore those public voices take on a larger influence in evaluating our own situation.

 

@rainy @lunarainbows I am so sorry that both of you had to go trough this! I recognize so much from how I myself spent too much energy on research when the first LP-wave hit a decade ago. I knew all along that it was not for me, that it could not help me. Still, I spent almost a year doing research and trying to find an angle that could convince me to try.

What finally made me able to let go, was a book I read (on something completely different) that explained a theory on how people who have “found their way” need to confirm their choice by convincing others to share their beliefs. It just made such sense. It was no longer about me, but about them and their own false confidence.

 

Just posted on the German forum (thanks @diwa):

https://ze.tt/ich-wollte-lieber-kre...fSnv5WdtDS2i4wQta7cXSsW8sKZEr68Sgn62CLy7JFyx4

A good article in the German press about a young man in a terrible situation all too familiar to us - 20 years old, severe ME, life on hold, no help from the health system. The article ends (google translate tidied up):

 

Quite worrying that he wants to travel to Spain in his condition. These patients are they cured?!

 

I only have the information in the article, and those 3 paragraphs I quoted from the end are everything about "the operation that could help him". I don't know who the five patients are or how cured they are according to his research.

To me it illustrates how these CCI stories are having a real effect on the decisions desperate patients might make, and I find it worrying.

 

Very worrying!!!!

 

Very.....

 

Given that there has already been one death it shows how desperate things can be.

 

Oh I’d not heard about that. Was the death a patient with ME and/ or EDS? Which surgeon?

One death out of 5 PWME would be a worrying stat. I think the overall death rate for OCF/ spinal surgery must be much lower than that.

 

If I recall correctly, it was a patient with EDS, and they desperately needed the surgery, and they were aware of a high risk of dying, and chose to proceed anyway.

 

It depends on the reason for fusion. In my practice where we did high cervical fusion for craniocervical instability in rheumatoid patients the mortality rate was about 50%. That reflected the severity of the situation that ws considered bad enough to justify surgery.

Significant complications in terms of pain or wound problems or functional loss occurred in more or less all cases I referred.

 

Concerns about the procedure itself aside.

I know for a fact that my local health service would never touch my neck after an experimental procedure abroad, no matter how minor or big the complication afterwords would become. I know of patients that have been declined help in their home Country, that have to travel back to Barcelona for every single little thing. At their own cost.

Also: the day I am better, I am hoping to live my life without having to drag a Collar with me wherever I go. I would like to be able to drive a car, run, jump, stand in a Crowd without having to think about the danger of sudden impact.