Jen Brea: My ME is in remission

Yes, the thought also crossed my mind that it just could be the processes that have been undergone having some unknown beneficial effects, rather than the surgery per se. Would not be the first time improvements / cures have been stumbled upon without knowing why at the time.

 

All this talk, really makes me keep asking: is ME perhaps an end point: and that folks have other problems in their bodies: and then their bodies give out as it were, or do not completely give out for the milder cases. I just don't know what to think anymore. Some take antivirals and get betters, other avoid mould and get better; and on it goes. Forgive me for this agitation. I just don't know what to think anymore, despite reading and reading.

 

I'm curious about how this condition could be triggered (or perhaps "unmasked") by an infection. Jennifer has written that she believes her trigger was an infection.

 

Trish - can I ask what these lists said the symptoms of CCI and tethered cord were?

(I know I asked a similar - but slightly different - question on another thread a couple of days ago. I've been trying to do some research into CCI and in the process I've seen quite a few descriptions of CCI symptoms which seem (to me at least) to include a lot of overlap with ME. Obviously I shouldn't trust everything I read on the internet though, so I'm curious to know what you consider the main symptoms of CCI to be)

 

Great to hear that she's feeling so much better. Fingers crossed for her (and Omar) that it will last (and improve too, as she continues to get over her surgery).

I'm always wary of reading too much into anecdotes, and especially with a 'public' patient like Jen there is a danger of one person's recovery being built into a 'story' that influences others without us really knowing what happened and why. It seemed like she was being more cautious than many patients who have recovered after some intervention or other. Maybe it's a bit unpleasant to jump to those concerns rather than just sending good wishes?.. the years of watching shitty ME/CFS coverage in the media has meant I'm drawn to possible negatives!

 

Also that CCI is almost as controversial as ME. Maybe that will help change that.

I personally have no issues with differential diagnoses. It's pretty clear that ME symptoms have multiple possible causes and additional knowledge will only help separate the groups and clarify typical ME. It's really not surprising that many diseases would have similar symptoms.

 

There are for sure a set of symptoms in CCI that do not typically present in ME/CFS. For example a quick worsening related to a change of orientation of the head and neck. I reckon Jen had a scary symptom where even her breathing would temporarily stop when her head was in certain positions, which is definitely not a typical ME/CFS symptom. Maybe brain stem compression is one path to autonomic nervous system dysregulation and subsequent development of ME/CFS.

 

So happy for Jen! It certainly wasn't an easy route for her, first all those years so very ill then all those major surgeries.

I think she's discussing her improvement in a responsible manner, stressing it's just one individual story and not claiming that her experience is going to be the solution for all, or even many, others. Though there will undoubtedly be those who'll twist her story to fit their own ideas.

It looks like Jen with her CCI and tethered cord fully met ICC criteria, including PEM.

Maybe what this points to is that we should be investigating other conditions that affect the brain stem to see if they, too, would meet ME criteria, especially PEM.

If so that would be a strong pointer that the role of the brain stem needs to be looked at more closely in ME (I think some work has been/is being done already?).

 

Jen has certainly written that this was her experience and Jeff also wrote on his website that he experienced something similar. However from what I can tell this loss of consciousness doesn't seem to be a core symptom of CCI - I certainly don't remember seeing it in any of the online articles that I've read so far. I'm reluctant to consider this symptom a distinction between CCI and ME if it appears that most CCI patients don't actually experience it.

 

First, great news for Jen. Let’s hope her remission is permanent. I have often dreamt of what she must now be experiencing, and it must be wonderful – albeit with the apprehension of not knowing whether her symptoms will return. After 27 years of severe ME, the prospect of ever returning to anything approaching a normal existence becomes increasingly remote with every passing year, but it is still what keeps me going.

I hope the effects of Jen’s remission will be positive for the community. I’ve not read her full blog yet but I would be surprised if she was not intending to remain active within the ME community, and as a healthy person she will be able to do a great deal more than as a patient. I’m also sure that she must appreciate that most people diagnosed with ME/CFS are unlikely to benefit from the treatments which appear to have helped her – although I can understand that she must also be keen to ensure that anyone who may benefit from the treatments she has had will be able to access them. Getting that balance right may not be easy.

For my part, I have always considered it unlikely that most people diagnosed with ME/CFS have the same underlying condition (although I accept that I may well be wrong). And although the anecdotal evidence of one patient (2 including Jeff, 4 including the others on PR) should not alter anybody’s perceptions, it does not surprise me that Jen’s symptoms appear to have had a different underlying cause to mine. Even if it transpires that most people with ME/CFS have the same causal pathway, I fear that I may be among a minority with a different pathway – and I guess that is something we should all be prepared for to some degree.

To me, Jen’s experience just highlights, once again, the desperate need for us to understand a great deal more about the pathophysiology of ME/CFS, and I hope and expect that that is what she will be using at least some of her increased capacity to try to help to achieve. To me, at this moment in time, ME/CFS means that you meet certain diagnostic criteria and nobody knows what is causing your symptoms. And that is not enough.

As much as I dream of remission or recovery, after all this time, if I could just understand what has caused the symptoms that have destroyed my life I might be able to rest in peace. It is no criticism of Jen to admit that learning of her experience has heightened my uncertainty about the usefulness of my diagnosis and whether there may be tests or treatments already out there which could help. Experience suggests that such feelings are often unhelpful. But often is not the same as always.

I didn’t know Jen was a scientist. Is that right or is she meaning that she was a social scientist?

 

Is that technically science? Seems a bit of a loose definition?

I must say I’m really pleased to hear of any recovery story ..it gives us all hope ... but I have a mixed sense of foreboding with this one (which is weird)

Perhaps it’s the worry about these stories being twisted by the press? Or that it won’t last? Or perhaps it’s the sense that this mixes up the pot a bit with some other theory to divert research funds?

Hopefully this is something Jens thought long and hard about though in terms of press. I’m sure she will stick around within the ME community. She has after all invested a lot of time and effort. Although I wouldn’t blame her if she decided to run off (can she run yet?) and start a new life.

For now it’s probably best not to overthink it and be happy that another person has managed to get some relief from this prison sentence.

 

Wow! Super happy for her, thats crazyy

The more i read studies and evaluate anecdotal recoveries the more confused i get not gonna lie.. It makes sense though that some ME-cases should be due to brainsstem/spinal issues. Certainly a lot of symptoms can stem (he he) from there, on the top of my mind.. Fasciculations, pain, weakness, brainfog. Not sure how PEM fits in though

 

Yes, I do and I’ve been thinking this for a while. This would fit the « CFS/umbrella » diagnosis, where CFS is a fit because nothing else can be found. If you keep digging, you might find the cause, treat it and cure it, as happened to Jen.

But it’s not typical ME (my thinking is in line with Dr HYde’s definition, among others), which is simply not treatable at the moment.

 

Wow - great news! Hope recovery continues to progress. Maybe this could eventually lead to an imaging study for pwME.

@Trish, @Jonathan Edwards @ScottTriGuy @adambeyoncelowe @dave30th @Hutan, @Dolphin @JaimeS @Andy - FYI (just thought I would point this out to some - in case it isn't read) Thanks!

There have, of course been some brain imaging studies done:

Page 71 of the Canadian Consensus Criteria (CCC) mentions involvement of the brain stem: "All 24 ME/CFS patients in a controlled study exhibited generalized hypoperfusion of the brain with a particular pattern of decreased neuronal metabolism in the brain stem identified by PET scan analysis (170). These findings which suggest significant hypoperfusion and hypometablism in the brain stem , warrant further study (171,170)."

Link to the CCC:https://mefmaction.com/images/stories/Medical/ME-CFS-Consensus-Document.pdf

Reference 170 as above in the CCC: https://academic.oup.com/qjmed/article-abstract/88/11/767/1569403?redirectedFrom=PDF

Reference 171 as above in the CCC: https://www.ncbi.nlm.nih.gov/pubmed/9790482

ETA: I understand the above brain stem issues may not be the same as Jen's.

ETA #2: Hi @JenB - so glad you are doing so much better! Thank you for all your work for our community. As others have said - your story may create some varied and undesirable publicity. However, as per above, the CCC notes a 1995 study about brain stem problems for pwME - so your treatment/diagnosis is not completely out of the realm that has been previously studied. We know there are lots of areas that have been studied with this disease that didn't receive further funding, or twig the interest of other researchers.

As for "Unrest", the messages still stand - ME is dismissed, virtually unknown, the level of research funding is appalling, millions of lives are severely harmed etc.

If your remission stays, and I really hope it does - your treatment may be just one more way people can improve or recover from this monster of a disease. I hope you might be able to use channels to have the NIH check this out for people, if this organization is not already doing so.

Please also see my post on the top of page 3 re page 80 in the CCC, which mentions further, the need for more research into brain stem hypoperfusion.

Thank you again!

If this is one cause of ME, it makes me think about how many lives have been wasted, abused and neglected literally to death!

 

I understand Jen Brea also studied statistics, as well as poli-sci.

 

Cool. Interesting. Weird. I don't know that it should be looked at as M.E. micking CCI or so. I suspect it's more nuanced than that. What it looks like is that sometimes issues of the spine (chiari, cci, stenosis) trigger a pathway of symptoms that presents as M.E. Because they definitely don't always, or necessarily often do it. E.g. the many ways a person gets a migraine.

But, that's at least one way to get the response, and I hpoe that research in M.E. should be looked at neurologically, maybe A LOT more than it is. They also share something else in common - neurosurgery. This is a potent, high impact experience for the body, and it may trigger some response that overcomes metabolic issues etc. To me, the later explanation seems far less likely, and I'm not suggesting it's placebo at all.