My ME is in remission

[perrier]

are there case where surgery is done and the result is not really positive?

 

[TreePerson]

Hi Jen
Has PEM completely resolved? I realise it is not that long since your surgery and you must still be building up your strength. However if you do a lot of steps or stand for long time or have a particularly busy day do you feel tired and recover in a normal healthy way?

 

[ljimbo423]

I do believe that a central factor in a large percentage of cases will be damage or dysfunction in the brain, in particular, the brainstem and adjacent structures. I also believe we will learn that these structures can be compromised for different reasons.

Some will be structural (e.g., Chiari malformation, craniocervical instability, spinal fluid leaks, intracranial hypertension) and others infection, inflammation or autoimmunity.

But whatever the cause, the pathology in many patients will be located in the same regions of the brain. People's symptoms will vary depending on what areas are affected. At least, that's my working hypothesis! (((*Hypothesis.*))) Hopefully we'll soon see what Mike VanElzakker and Jarred Younger's research contributes to this topic.

I agree that most symptoms of ME/CFS will be found to be caused by the brain and that there can be different causes for that. What you say about different areas of the brain being affected, causing different symptoms also rings very true for me.

You and Jeffs remission seems to give strong credence to Jarred Younger's theory of brain inflammation causing symptoms in ME/CFS.

 

[gregh286]

Just read this coincidentally

https://www.bbc.co.uk/news/world-us-canada-48266430

 

[Remi]

Congratulations, this is fab! ⚘Thanks so much for sharing and educating. This is so important for other "ME by CCI" patients. And also the EDS with CCI patients.

are there case where surgery is done and the result is not really positive?

I read a lot about that in the FB groups, but not sure if these are all EDS patients with more complications.

 

[cyclamen]

Hi Jen, I‘m so happy for You!!!

Hope You are able to answer two questions for me:
Did You wear a neck brace before the fusion and if, did You have the impression it made you feel somehow better?
Had you done testing for at1, alpha, beta and m Antibodies before and if you did, have you been positive for some?

 

[toyfoof]

@JenB your TED talk led me to finally get my diagnosis (I remember frantically googling Myalgic Encephalomyelitis while listening on the TED Radio Hour on NPR) . . . Unrest led to my family understanding and beginning to advocate for me (I'd never seen my boyfriend cry until we watched Unrest together) . . . and your and @jeff_w 's stories of CCI surgery led me to have my neck imaged and discover that, while I don't have CCI, I have severe stenosis, edema, compression fractures, and other issues causing my spinal cord to be affected and likely affecting my brain.

I've been doing conservative treatment for my neck: very basic physical therapy exercises, daily cervical traction, myofascial release therapy, and heat therapy. My symptoms of PEM and head and neck pain are starting to improve.

Thank you SO MUCH for sharing your story, @JenB and @jeff_w . And for the work and research that have led to your hypothesis which rings so true to me. And I am SO SO HAPPY to read the words "my ME is in remission." Those words are powerful and hopeful! I'm so optimistic that @StarChild56 and @mattie will be saying them too!

 

[Hip]

Has PEM completely resolved?

From JenB's blog article:

By any definition, I no longer meet the criteria for myalgic encephalomyelitis. My physical and cognitive post-exertional malaise (PEM) are both gone. I have not crashed since I left the hospital. My POTS is gone. My peripheral neurological symptoms, sound sensitivity, sensory processing challenges, difficulty regulating my body temperature, intracranial pressure, brain inflammation and muscle fatigability are all gone. I am off Valcyte, Famvir, Mestinon, and all other ME or POTS drugs.

It is now clear that all of my symptoms had a mechanical mechanism: brainstem compression (likely with altered cerebrospinal fluid and cranial blood flow) due to cranial settling and craniocervical instability (CCI), in combination with tethered cord syndrome. Given my remarkable improvements, the centrality of those structural mechanisms is, in my case, undeniable.

What remains elusive is the root cause. I know that CCI caused my PEM and other ME symptoms. I can never know why I developed CCI in the first place. (I do have some conjectures!) And I have good reason to think that so long as my fusion holds and my spinal cord does not re-tether, my PEM and other symptoms will never come back.

 

[Gingergrrl]

For eight years, I have mostly bedbound, homebound or a wheelchair user. It has been a sometimes wonderful, but often unbelievably difficult journey. I wanted to share that thanks to three neurosurgeries, all of my ME symptoms are now in remission.

This makes me so happy to read, I (almost) have no words! I am so happy for you @JenB and all of your hard work and perseverance has paid off. Even though my illness took a different course, I really related to you b/c I used a wheelchair 24/7 for almost four years and had absolutely lost hope that I would ever walk again without one. But due to my treatments, I have not had to use a wheelchair since May 2018 (now one full year). It is the most liberating feeling on earth and I am so glad that you can walk again (and beyond...) and I know that amazing things are in store for you!

Medium post: https://medium.com/@jenbrea/health-update-3-my-me-is-in-remission-dd575e650f71

I just read your article on Medium (thank you for posting the link) and am hoping everyone will read it. I am so impressed that you can now walk 4000 to 7000 steps per day! My average now is about 1500 to 2500 per day (and the most I have ever tracked was approx 3500 in a single day but that was a rare exception).

Would you say that you have totally normal muscle strength and stamina now (like pre-illness levels)? Are there any postural changes or movements that can still trigger POTS symptoms for you or are they totally gone?

acetylcholine receptor autoantibody testing

I was curious since you mentioned this (but only if you are comfortable sharing) if your acetylcholine receptor autoantibody testing was normal or abnormal (at the time that it was initially tested, which I assume was prior to your surgeries)?

Wow! That's incredible for you!! Congratulations! This tells me to NEVER give up on remission.

Absolutely and we can never give up hope (like we talked about recently in the quote thread). I am not at the level of remission as Jeff and Jen (and am more in a middle ground status if that makes sense?) but they both give me hope that more is still possible, especially on days that I feel very discouraged.

Thank you for sharing your journey @JenB, and all of the ups and downs, so openly with all of us

 

[frozenborderline]

In this post I speculated that connective-tissue degrading enzymes, a set of enzymes that viral infections may induce, might possibly explain the weakened connective tissue that leads to CCI/AAI.

Coxsackievirus B is also known to chronically infect fibroblast cells. These are the cells which male the collagen and elastin of connective tissue.

I want to make a separate thread for speculation about non genetic or trauma based causes of cci, but before I forget , let me drop this here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6516833/
This is a study about mast cell activation causing collagen to degrade, albeit in arthritis. So this is another more indirect way that environmental expsures rather than genetics could contribute to cci. Jen mentioned having intense mold issues early in her illness , and we know mold can cause mast cell degranulation.

 

[GypsyGirl]

No questions at the moment - just happy for you and celebrating your steps! Well wishes as you continue recovering, take on the challenge of transitioning back into the kingdom of health, and process the experience. It's a doozy!

Thank you for sharing your latest, and for sharing such clearly outlined info that helps educate the what/why/how. Such info is like a beacon of light as I walk my own journey.

 

[ljimbo423]

Absolutely and we can never give up hope (like we talked about recently in the quote thread). I am not at the level of remission as Jeff and Jen (and am more in a middle ground status if that makes sense?) but they both give me hope that more is still possible, especially on days that I feel very discouraged.

I remember those posts well. This thread has also given me hope that much more is possible. Even though I think the cause of my ME/CFS is very different from Jens and Jeffs.

I don't know how many steps a day I do but my symptoms fluctuate between mild to mildly moderate!

 

[frozenborderline]

So as to not go more offtopic here, I started a separate thread speculating on environmental causes of cci and related disorders: https://forums.phoenixrising.me/threads/environmental-causes-of-cci-and-related-problems.76329/
For anyone who is curious. All started with some very nice effortposts by hip, but as my PEM allows, I will add some related science

 

[junkcrap50]

Hope Jen doesn't forget about us now that she's cured. She's a great advocate.

(not that I expect she would)

 

[Murph]

1. Congrats @JenB ! I'm excited for you! You've been a great advocate and I think we were all following this closely. This story has a better ending than Game of Thrones!

2. I bet you're excited to do a lot more things with your life! You deserve to get out there and catch up on the things you've been missing. But I hope you stay in touch with everyone here from time to time!

3. I've expressed a fair bit of skepticism of the merits of people getting CCI surgery to cure their ME/CFS based on the evidence to date. It's a scientific kind of skepticism though, not an in-principle one, so every recovery that comes in lessens my skepticism. I'm more inclined to believe now than I was, and I look forward to getting more data!

 

[frozenborderline]

3. I've expressed a fair bit of skepticism of the merits of people getting CCI surgery to cure their ME/CFS based on the evidence to date. It's a scientific kind of skepticism though, not an in-principle one, so every recovery that comes in lessens my skepticism. I'm more inclined to believe now than I was, and I look forward to getting more data!

I think that the merits of fusion surgery in me/cfs and whether or not this condition is prevalent and should Be diagnoses are sort of separate issues. As someone with cci and ME, I wish this was studied more so there were non surgical options.

I can understand the skepticism though, because the percentage of people with ME who have been screened for this who have turned out to have it is almost hard to believe. It seems like there are a few possible responses to this. One response might be to doubt the diagnoses. One response might be enthusiasm about surgery as an ME treatment. A third response, may be to ask “what the heck is causing this???”, because of these diagnoses are correct , which I think they are, it still doesn’t offer a WHY. Rather than wanting people to have surgery, the reason I have been skeptical to skepticism on This topic is that I sincerely want this huge question addressed—why is a large number of us that don’t have genetic causes or head trauma, having failure of our collagen?

 

[Rachel Riggs]

@jeff_w
What do we know know about stem cell options? Isn't there some place in CO doing stem cells for CCI?

 

[frozenborderline]

@jeff_w
What do we know know about stem cell options? Isn't there some place in CO doing stem cells for CCI?

It’s called regenexx. Someone on fb has had good results she’s Been documenting. It’s still rather experimental and the needle going that deep is not fun looking, but they are also currently doing a clinical trial.

 

[MEPatient345]

I’m so emotional about this.. it’s amazing. I can’t believe it. Jeff, Jen, hopefully Mattie soon and more of us. I feel there is hope for all of us.

 

[Diwi9]

Congratulations @JenB! Thank you for continuing to share your story. I hope others with structural problems can learn from your sharing and get help too.