Discussion in 'General ME/CFS News' started by Dr Carrot, May 20, 2019.
You beat me to it, @Dr Carrot - I was just in the process of posting this same news.
Sounds very good. Almost too good. Let's hope this lasts.
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.
Think it’s concerning that if this encourages people with ME to raise this with their doctors they are going to get a blank stare and more rejection
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.
I hope this leads to investigating autonomic dysfunction for ppl diagnosed with ME.
Indeed fantastic news that she's in a remission. Amazing!!
On the downside it's a little confusing for my brain fogged living in the dark severe ME self.
Jen Brea is answering questions on Reddit:
Edit: Sorry this is so long, just posted the link
There must be thousands of us who have thought, on dozens of occasions, that this time it has really gone. Time alone will tell.
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.
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?
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.
Nancy Klimas and Gordon Broderick recent paper ( Introduction, page 1) :
It is not improbable that ME/CFS may serve as an umbrella term for multiple different diseases associated with overlapping symptoms
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?"
Can't seem to get the whole article, just the abstract.
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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