Jen Brea: My ME is in remission

Inara said:
In the US, most insurances will pay it, in Europe they won't (I don't know if private insurances would, though). And yes, these kind of surgeries are very expensive.
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This is my concern for people with ME if they start bringing this up with GPs especially here in the UK they are going to get a very negative response and it will likely be seen as justifying MUS/psychosomatic labelling.
 
NelliePledge said:
This is my concern for people with ME if they start bringing this up with GPs especially here in the UK they are going to get a very negative response and it will likely be seen as justifying MUS/psychosomatic labelling.
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Indeed, though if we build up a good evidence base and it turns out this is the disease mechanism of ME then it works in our favor.
Also if its something thats misdiagnosed as ME then the patients who benefit will need to be able to be separated out and treated which would change their lives for the better.

Inara said:
In my experience this happened often. But I might pick the "interesting" ones. :)
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I seem to have the same "interesting" luck
 
NelliePledge said:
This is my concern for people with ME if they start bringing this up with GPs especially here in the UK they are going to get a very negative response and it will likely be seen as justifying MUS/psychosomatic labelling.
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I brought this up with my GP a few months ago.


I did this because of 2 things
1) I developed a new symptom last summer- a severe worsening of symptoms such that I had to lie absolutely flat for two weeks after a car journey down to Cornwall which I had been doing each summer for 35 years sharing the driving - I was very dizzy, nauseous for the first several days of the lying flat such that I felt alarmed

and 2) that I had a diagnosis of hypermobility and an NHS Prof suggested that my conditions ( I have others) could come under an overarching umbrella, perhaps EDS, and referred me ( unasked) to a geneticist. CCI seems to be linked according to some accounts with EDS although @JenB made it clear that she is not hypermobile.

Just to say for now that my GP had been approached by another patient with a similar query and was not hostile. He knew the three neuro surgeons worldwide who do this surgery. This was surely unusual. It sounded as if someone had been reading the same info as me.

Note: I am not wishing to seek or be tested for surgery myself but now use a Philadelphia collar for travelling and will be flying to Cornwall this summer. Flying doesn’t provoke the same problems.
 
theJOYdecision said:
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.
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That's a lovely hopeful response..
Well said!
 
TiredSam said:
Wonderful that Jen has managed to get her life back.

Can't help wondering whether she had a blood transfusion as part of any of her surgeries?
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Andy said:
Or antibiotics. Part of my pondering on my improvement is whether it's down to the course of antibiotics that I had - I'd never had any antibiotics at all prior to my recent gallbladder issues.
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Anesthetic :cool:
 
obeat said:
I was wondering if prolonged anaesthesia could be beneficial? Very out of the box. Look at the marked contrast in response to the menopause.
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Reminds me of the hibernation therapy thats been tried for depression and a few other diseases, didn't work so well unfortunately
 
theJOYdecision said:
I think, for the sake of honesty, it would have to alter how it is used.
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Since folks are bringing up Unrest, all I can say is that when I viewed it, I found it to present the most accurate picture of Me that I have ever seen: the collapsing for no reason, the twitching, the sickness, the weakness, etc.

As I said earlier, and as Doka pointed out, it looks like these spinal issues have been pointed out earlier by ME doctors.

I wish Jen all the very best in her new life, unleashed from the prison of the bedroom. Best wishes.
 
Binkie4 said:
I brought this up with my GP a few months ago.


I did this because of 2 things
1) I developed a new symptom last summer- a severe worsening of symptoms such that I had to lie absolutely flat for two weeks after a car journey down to Cornwall which I had been doing each summer for 35 years sharing the driving - I was very dizzy, nauseous for the first several days of the lying flat such that I felt alarmed

and 2) that I had a diagnosis of hypermobility and an NHS Prof suggested that my conditions ( I have others) could come under an overarching umbrella, perhaps EDS, and referred me ( unasked) to a geneticist. CCI seems to be linked according to some accounts with EDS although @JenB made it clear that she is not hypermobile.

Just to say for now that my GP had been approached by another patient with a similar query and was not hostile. He knew the three neuro surgeons worldwide who do this surgery. This was surely unusual. It sounded as if someone had been reading the same info as me.

Note: I am not wishing to seek or be tested for surgery myself but now use a Philadelphia collar for travelling and will be flying to Cornwall this summer. Flying doesn’t provoke the same problems.
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Thanks @Binkie4 im glad your GP was fine about it.
 
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