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

Wayne

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i had no idea so many people had the reversed curve! i guess its unlikely that the neck is the problem then
@Daffodil -- I had a fairly remarkable experience recently that touches on this topic. I had been having a fair amount of pain in my neck, and finally one day, did a LOT of deep massaging at the area behind my ears; along the edge of what felt like my atlas. Later on, I went for a walk, and right away noticed something was different.

I felt I was walking with better posture, and had far less pain and discomfort in my neck. I also noticed a difference in my pectoral muscles. Most of all however, it felt (in sort of an intuitive way), that a marginal amount of curvature had returned to my neck, and as a result, felt much less stress in my neck than normal. It was like the relatively miniscule change in my neck curvature gave it more support. -- I'm continuing to experiment with this, and think there's a possibility I can refine what I did, replicate it, and possibly be a "good enough" solution for myself.
 

JenB

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I wrote the will before I had surgery. I wouldn't be able to do it right now. I've just been through the most difficult and painful experience of my life on the heels of a grueling 18 months. My first surgery was November 28th. I only got home two weeks ago. Many of my systemic symptoms are all over the place. I am still tapering off medications. I wake up every morning at 4 or 5am in terrible pain. I've already said that the surgeries went well and cured my apnea and peripheral neurological symptoms. I have nothing to say about the long-run outcomes of these surgeries on my systemic symptoms, positive or negative, because they haven't happened yet. I will update folks further when I am ready. It would be deeply irresponsible to write about my current health status with respect to ME and POTS: it's far too early and frankly, I don't think I have the cognitive ability at present to take the care I would need to take.

If anyone is actually planning on having surgery, I'm happy to chat re: anesthesia, medication, post-surgical care and recovery. DM me here.

EDIT: Hello everyone. It's nice to be able to be here again. This is my first time even lurking on PR since December. I'm sorry that my first post is a defensive one. The emotions this topic evokes have surprised even me. I cannot speak for Jeff but I am definitely not promoting surgery to anyone. I'm completely aware of the responsibility I have given the number of patients I can reach. I do think it was important to present my diagnosis publicly as a) I could have died and b) I did end up disappearing for two months. The speculation would have been endless had I not told people what was going on. I did it with as much care and as many caveats as I possibly could. The "hype" is that some people saw their own symptoms and experiences in mine and Jeff's stories. That was inevitable as there is no way we are alone in our experience. And I do think diagnosis is important: I wish I knew I had CCI before my thyroidectomy. By sharing my story, maybe others having totally unrelated surgeries will now take care to protect their necks.

I do think this is one of the most important area of research receiving zero research attention. (Not that the other important areas of research are getting nearly enough attention!)
 
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Wayne

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I've just been through the most difficult and painful experience of my life on the heels of a grueling 18 months. My first surgery was November 28th. I only got home two weeks ago.
Dear @JenB -- I'm sorry to hear how difficult things have been for you. Please know that virtually all of us understand you have to focus on your own healing, and that what you're able to share is a bonus to us who are hoping for the best of outcomes for you. -- Thank you for your brief update, even though it appears it wasn't easy for you to do. -- All the Best! :)
 
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Silencio

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Dear @JenB, no need to explain yourself.. No reasonable person on here thinks you are promoting surgery, or demands your story be told soon. Hope you heal fast, and sorry it’s been so difficult for you. Sounds like a scary and traumatic time. Most of us all just tiptoeing into this, finding out what we can, and being realistic about expectations and risks. I personally don’t think it’s too much to expect that ME patients can access and request spine imaging, or that it’s “hype” to talk about it.
 
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@JenB , I certainly did not expect you to comment any time soon. Your recovery will be long and I can relate to being in constant pain. You conduct yourself with dignity and in such a responsible manner! You impress me all the time! You probably saved my life with Unrest, that is how I found PR and a way back to some sort of life! Thank you.
 

Gingergrrl

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Unfortunately some people that are skeptical of cci, like the twitter account “truthseeker”, have been putting comments from this thread onto twitter and making allegations that are pretty unfounded and inflammatory—- that particular account accused not just Jeff, but also David Kaufman!!!?? of being in on some kind of scam with Bolognese.
Thank you for bringing this to light @Murph and @debored13 and I tried to let it go but was just horrified by what I read. I do not have CCI (in spite of having severe chronic neck pain) and just wanted to put that out there first. I also have no knowledge or opinion of Dr. Bolognese outside of the fact that he did an amazing job with Jeff's surgery which was life changing for him. I have known Jeff for 4+ years as a friend outside of PR and for anyone to insinuate that he has any motive to share his story other than a desire to help others is patently absurd. In fact the only other person I know of (from PR) who had this surgery (Mattie) had it with Dr. Gillette as his surgeon and has no connection to Dr. K or Dr. Bolognese.

What bothers me the most re: some of the comments are not only that they are "unfounded and inflammatory" as @debored13 stated but they are also categorically untrue. Dr. K has been my doctor for 4.5 years and he not only figured out the root of my illness (autoimmune dysautonomia) but the proper treatments that led to my remission. A researcher contacted me privately a few days ago (b/c of sharing my story on PR over the past four years) and wants to publish my case in a medical journal. All of the people connected to this endeavor, including the researcher, know that Dr. K is one of the most honorable and respected doctors out there. They want to publish my case story in the hope that it can help others (and they have not even contacted Dr. K yet and just contacted me first).

I was getting 3-4 new PM's per week asking me to share my experience with IVIG and/or Rituximab (and I am sure that this is a fraction of what Jeff and Jen receive asking them questions). I am not skilled enough to create a blog or website, and my story is fragmented all over the place, but my sole desire is to help others and it is the same for Jeff. When you are deathly ill, and receive many different diagnoses, and multiple doctors tell you that you cannot be helped, and then you FINALLY find something that puts you into remission, you want to share it. For me the root problem was autoimmunity and for Jeff it was CCI. We shared many overlapping symptoms (like POTS & MCAS) but also had many different symptoms and we ultimately had completely different treatments.

It pains me to see false statements being written about people who I know and respect very much. Yes, much of this is anecdotal at this point and it is the best we have with such limited research funding. Many people receive incorrect diagnoses, or false psychiatric diagnoses, and receive no help whatsoever. The doctors who take on these challenging cases are the heroes in my opinion and I wish we had more of them. The last thing they need is to be publicly attacked. Thank you to anyone who read this.
 
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Rlman

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@Daffodil maybe Gilete would find the xrays you did with the chiro helpful? maybe worth sending them to him

btw thats nice of the chiro that he just did xrays instead of dmx which is way more radiation exposure

also, some ppl in BTM and Cusack say Atlas Orthogonal has helped the avoid surgery. in prolo group one lady said it worked but then made her ligaments laxer, but she might have EDS.

here is an article talking about the use of flexion extension xrays and other imaging for diagnosing CCI, cranial settling
 

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Rlman

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Diwi9

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@JenB - Maybe some folks on PR do not realize that you did post on Twitter that you would be offline while recovering. Thank you for taking the time and energy to share. None of us have solid answers as to what is going on with us...for what it's worth...fusion doesn't cure EDS either. It is miracle enough that you can breathe again. If there are further improvements, even better. Keep us posted when you have recovered from your surgeries (for those that don't know, Jen had multiple surgeries within a short time span last year).
 

debored13

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It pains me to see false statements being written about people who I know and respect very much. Yes, much of this is anecdotal at this point and it is the best we have with such limited research funding. Many people receive incorrect diagnoses, or false psychiatric diagnoses, and receive no help whatsoever. The doctors who take on these challenging cases are the heroes in my opinion and I wish we had more of them. The last thing they need is to be publicly attacked. Thank you to anyone who read this.
Personally I’m totally fine with critical discussion of bolognese, who is controversial. Perhaps he’s great, or maybe he’s not. I plan to read all of the lawsuits and then talking to more people who had good experiences with him, before making my decision. But I think that when the discussion is veering into attacking a respected doctor in the me/cfs community and a respected phoenixrising member and patient, that it’s going too far.
 

rel8ted

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But I think that when the discussion is veering into attacking a respected doctor in the me/cfs community and a respected phoenixrising member and patient, that it’s going too far.
And perhaps, slander.

The whole idea here is to help solve a complex illness, not to become a troll on another website. We all disagree at some point, but that does not give license to attack publicly in other forums.

I will say it again, I am thankful for those with the guts to share their stories to help others like @JenB (who very much deserves the rest and recuperation, and privacy her body needs right now), @jeff_w @Gingergrrl @StarChild56 @Hip @Murph @debored13 @mattie and others. If this disease has taught us anything, it should be empathy.
 

Wayne

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...nothing i do gets rid of the leaky gut. what is causing it? where is this inflammation coming from?
You might find this story interesting, and perhaps relevant to your question. A neighbor, who is generally quite fit, eats well, and lives a balanced lifestyle was recently diagnosed with bladder cancer. In the course of delving into what may have caused it, he discovered he had virtually no good bacteria in his gut. And he routinely ate fermented foods and supplemented with a variety of probiotics.
 

Daffodil

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You might find this story interesting, and perhaps relevant to your question. A neighbor, who is generally quite fit, eats well, and lives a balanced lifestyle was recently diagnosed with bladder cancer. In the course of delving into what may have caused it, he discovered he had virtually no good bacteria in his gut. And he routinely ate fermented foods and supplemented with a variety of probiotics.
wow. how interesting. what do you make of this?
 
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And perhaps, slander.

The whole idea here is to help solve a complex illness, not to become a troll on another website. We all disagree at some point, but that does not give license to attack publicly in other forums.

I will say it again, I am thankful for those with the guts to share their stories to help others like @JenB (who very much deserves the rest and recuperation, and privacy her body needs right now), @jeff_w @Gingergrrl @StarChild56 @Hip @Murph @debored13 @mattie and others
Well said @rel8ted