Jen Brea: My ME is in remission

@Trish, @Jonathan Edwards @ScottTriGuy @adambeyoncelowe @dave30th @Hutan @Dolphin @JaimeS @Andy : same with this post - just in case it isn't read - I wanted to get this info out there - it's late in the UK right now.....Thank you for reading this!


Page 80 of the Canadian Consensus Criteria says: " A longitudinal study to determine whether a specific pattern of functional MRI abnormality , and the findings of significant hypoperfusion and hypometabolism in the brain stem and other regions of the brain warrant further study. Measuring changes in brain activity circulation patterns associated with various physical and mental activities will greatly improve the value of these observations. MRI scans of the brain and cervical spine should include foramen magnum cuts to determine the incidence of cervical stenosis or Chiari I malformation in ME/CFS patients."

ETA: from MEPedia:https://me-pedia.org/wiki/Craniocervical_instability
"There have been anecdotal reports of people with ME who meet the International Consensus Criteria (ICC) who were ultimately diagnosed with CCI/AAI and/or Chiari malformation, a related condition.[1]" (emphasis added)

The CCC was published in 2003:https://mefmaction.com/images/stories/Medical/ME-CFS-Consensus-Document.pdf
 
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Dechi said:
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.
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There seems to be a lot of variety amongst the symptoms and experiences of patients classed as having ME/CFS. I'm not sure anyone knows what 'typical' ME is right now.
 
I’ve now read Jen’s blog and I thought it was well written. She says a lot of the sort of things that I have imagined I might say if I was ever recovered – differentiating between feeling well but exhausted and deconditioned, and the awful feeling of having ME and PEM. It makes such a nonsense of the ridiculous deconditioning theory.

Meanwhile, I was pleased that Jen recognised in the tweet below that some of us might have mixed or ambivalent feelings. That is certainly true for me, and I appreciate her sensitivity to and awareness of such feelings:

 
It comes across as quite mature and thoughtful the way Jen has announced her news. I imagine 100s of alternative ways of announcing the news which could have been much more damaging to the M.E. community. Her experience could be twisted by the unscrupulous or tunnel visioned. But with a collection of smart, motivated researchers on our case I think it’s much more likely that now insults to the brain stem won’t be overlooked even as progress is made in other areas.
My desire is that no one be left behind. I hope that if a treatment is found for metabolic issues, research on gut, immune system and brain stem inflammation will keep progressing until every subgroup of ME has a cure.
 
Barry said:
Ultimately ME is diagnosed by whether you meet a set of diagnostic criteria, and if you do then you have been 'correctly' diagnosed. Until we know any better diagnostic method, then that's the best can be done. There may well be all sorts of things meet the criteria - definitely confusing.
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The symptoms, though, of 'Tethered Cord Syndrome' don't sound anything like ME.

In adults, onset of symptoms typically include:

  • Severe pain (in the lower back and radiating into the legs, groin, and perineum)
  • Bilateral muscle weakness and numbness
  • Loss of feeling and movement in lower extremities
  • Urinary irregularities (incontinence or retention)
  • Bowel control issues
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TigerLilea said:
I wonder, even though Jen Brea believes that she had ME, if she wasn't incorrectly diagnosed in the beginning and never did have ME?? Anyone else thinking the same thing?
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More or less, i wonder if she had CCI and not ME at all and that the CCC and ICC are just not good enough to differentiate between the two. Or she has ME and its in remission somehow is also a possibility.

Stewart said:
I think that's a perfectly understandable response in the circumstances. But at present we don't know what ME actually is - you're diagnosed on the basis of the symptoms you have, once other conditions with similar symptoms have been excluded. As Jen explains in the Medium post that Dr Carrot linked to, she met the criteria to be diagnosed with ME - and that wasn't just her opinion, but the opinion of many ME specialists that she met.

Given all this I don't think you can say that she was incorrectly diagnosed. The question to ask at this point is "Is there a good case for including cervicocranial instability on the list of conditions that are ruled out before an ME diagnosis is given?"
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I think this is a good idea that should be investigated thoroughly (if we can somehow pull that off)

Robert 1973 said:
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.
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I do have some concern that some people will try this surgery out of misguided optimism and and not improve or even get worse. The need for more research is clearly indicated.

arewenearlythereyet said:
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.
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Agreed on all counts.

@JenB your thoughts on this thread?
 
DokaGirl said:
@Alvin

My post at the top of page 3 indicates Chiari Malformation, noted in the CCC as a possible cause of ME is apparently related to @JenB's CCI/AAI.
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I noticed that but its easy to ascribe something without sufficient basis. I would readily support more research into this area. It may also be a symptom and not a cause. Or it may be a cause and ME the symptom.
For example there is a great deal of overlap between Parkinsons and Lewy Body dementia. They may actually be the same disease but separated by severity or part of the brain affected or rate of acceleration (not to mention that about 3/4 of Parkinsons patients end up with dementia). However we cannot conclusively prove any theory at this point, just that there is a great deal of overlapping evidence that we cannot make definitive conclusions about given our current state of knowledge of either disease mechanisms and research findings.
 
I am very happy to hear that Jen is better.

As I have said before, there is no similarity between ME and the presentation of CCI or related cervical cord problems. (Cervical cord compression does not produce pain or fasciculation or brain fog.) I prefer not to speculate on one person's history. I don't think Jen's situation has any real relevance too PWME in general.
 
Trish said:
The thing that puzzles me is that I read lists of symptoms of CCI and tethered cord, and see very little or no overlap with symptoms of ME.
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Maybe there is missed knowledge, because Jen had a diagnosis of ME and then CCI was found, and a CCI surgery helped. Obviously something is missing. So there's some theoretical stuff, and then there's an observation. Observation and theory don't fit, so there needs to be some work done, like more observations and theory adjustments or changes - well, science.

It's no use to say "It can't be possible". It happened.
 
Happy for Jen and her recovery. Quite remarkable to read her letter and what she is able to do today.

Have absolutely no idea what to make of it in regard of ME? More confusion, but it surely state the fact that there are so many different things labeled under the umbrella?

Hope she stays along for some advocating, which she’s done in a good way. But would understand if she as other few recoverers heard of would literally run away. There must be hell of a lot of catching up to do.
 
DokaGirl said:
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.


If this is one cause of ME, it makes me think about how many lives have been wasted, abused and neglected literally to death!
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You've tagged me, and others, in this and another post. I understand you are trying to draw it to our attention but I don't understand what action you are wanting us to take?
 
For the sake of clarity in case anyone thinks [edit: misinterprets] my posts expressing puzzlement over how CCI or tethered cord could relate to ME. It is simply that - puzzlement, and concern that those conditions not be promoted by anyone as causes of ME on the basis of a few cases.

Those concerns are completely separate from my genuine delight for Jen. I wish her well and hope her recovery continues. I do not, and would never question her story. She was diagnosed with ME/CFS. I do not question that diagnosis. She is in remission. I do not question that either. Nor would I question anyone else's diagnosis or recovery.

But I don't think that disallows discussion in general terms of whether particular biological processes or structural problems are useful avenues for ME research.

Edit: First sentence edited for clarity and grammar.
 
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