Jen Brea: My ME is in remission

Dr Carrot

Dr Carrot

Senior Member (Voting Rights)
This is a hard post to write because there are no words that can do this justice. I can hardly believe it myself.

My ME is in remission.

For the first few years that I was ill, I dreamt of being able to say this. I fantasized about what recovery would be like. And then, I can’t remember when, I stopped dreaming. It wasn’t that I gave up hope. Rather, I knew I had to move on from something that might never happen and learn how to live the life that I had. And now, thanks to three spinal surgeries — one for something called craniocervical instability and the others for tethered cord syndrome — I believe I am on my way to a full recovery.
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I am very happy for Jen that her health has improved so much.

I am also wary about what assumptions she makes about her specific case being applicable to other people with ME, or suggesting that CCI, and/or tethered cord are the cause of ME for a subgroup, as she seems to be doing.

A couple of anecdotal stories do not prove anything.
 
Trish said:
I am very happy for Jen that her health has improved so much.

I am also wary about what assumptions she makes about her specific case being applicable to other people with ME, or suggesting that CCI, and/or tethered cord are the cause of ME for a subgroup, as she seems to be doing.

A couple of anecdotal stories do not prove anything.
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Many decades ago, DR Teitelbaum, in his book: From Fatigued to Fantastic, did raise the point that the ME could be due to CCI or tethered cord. So, it has been known amongst the early CFS doctors.

I am not sure what to think of all this. Is ME / CFS just an end point? And is it due to some problems in the body? Problems which are different for different people? I just don't know what to think or what to do anymore.
 
Recovered, whether temporarily or permanently, to me it's amazing news that someone with such a severe case of the disease has actually improved this much and the step charts really tell it all. Of course it's an N=1 case, but I reckon it's not likely there will be one treatment that works for the entire group of ME/CFS patients, at least not in my lifetime. I don't see it likely that this treatment will work for myself given that I already have experimented with neck traction without improvements, but it's still great news if even a subgroup can recover.
 
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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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.
 
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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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?"
 
Grigor said:
On the downside it's a little confusing for my brain fogged living in the dark severe ME self.
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I think we'll just have to wait to know what the implications are of this.

On the upside this can be seen as a story of hope: that somebody who has been severely ill for years with the same diagnosis and symptoms as many of us, can make it to what seems to be a full recovery, that is pretty cool.
 
ME/CFS patients will probably ask a lot of questions about this. Some are desperate and willing to try everything. So it might be a good idea to gather some reliable information about the risks of these kinds of surgeries.

If I remember correctly Jennifer herself indicated that this was not without risk and that there were complications in her case, requiring additional surgeries?
 
I wish her the best of luck and hope that her improvement/recovery continues.

Following my gallbladder removal early this year my functioning has improved (but not to any level close to 'recovery') and that has been enough to stir up all sorts of thoughts and emotions for me, so goodness knows what it's like for Jen.
 
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