@Jonathan Edwards
How can we make it worse if we've been shut out from medical care?
Collectively by doctors.
In the Netherlands I'm seen, pays bills doesn't it, but specialists only see ME, not me and no testing if they can prevent it.
Please publish, name and shame as much as you can. You...
Triglycerides have been found high before, while total cholesterol was normal.
A paper made me look for my test results. High but no high cholesterol.
Someone must be able to find that paper; one of our deep digging members?
Too much grease in an engine won't make it run smoother, I suppose.
The abstract said: "If further research is to take place".
Should be: "No further research should take place".
Pretty useless.
Short version of what @rvallee wrote.
All medical personel have been educated with: "It's all between the ears". Many would like to keep it there,
A little bit of news from BPS allows them to keep it that way, Just skimread a paper at most.
Bias confirmation is way easier than changing minds that are set in stone. Would they even...
Dear @Trish, my writing skills are lousy, my english is getting worse, but your "rant" has ideas that I can relate too a lot.
I once enjoyed psychology, read C.G. Jung for "fun", all of it. Even did a psychotherapy course, just out of interest.
And now the therapists are deciding on their own...
Authors that know way too little about LC and ME/CFS should stay miles away from "educating" patients.
A one day group course is too long for most patients anyway, they should have known that.
The idea alone that one day of "education" would be helpful is pure hybris.
Convenient for the...
Rehab by education, CBT even when not asked for; how about NICE?
6- 8 weeks of education and goal setting and then there is an app to gather information (for the physio's).
But the patients will have to do self-management.
Physio's are paid, insurance does not have to pay that much...
1993!! 2017
If there had been follow up on these papers, I probably could have been "helped" 25 - 30 years ago.
Now I still can't get my blood volume tested. I asked for it 4 times. But specialists don't know no nothing, but always know better.
I still think low blood volume is my main problem...
I really hope Professor Vink can enjoy his promotion, all the way from Shanghai, whether human error or AI.
I like the sound of it. Congratulations professor Marc Vink. You would have earned it with your work on warning against GET.
If the professor is not lasting, your contributions to keep...
Maybe I would be the perfect test case because my AT was extremely low at 1 28 min. Only one CPET.
After doing groceries I always have a day after, off day.
When I know I should postpone my shopping because getting ready to go takes too long, chance of PEM is greater.
Muscle aches in both cases...
Why? How else can they get more positive answers after treatment.
Just show happy faces: 1 point. Show hugs : 2 points. Still does not add up to real improvement though.
Thanks for gaining a lot of knowledge and a lot of skills. I take my hat off and bow as deep as I can for what you have achieved.
And now addng the wisdom to it that good does not have to be super perfect.
Be careful about boosting NK-cells.
I think I don't get the flu-like symptoms when in PEM because of low NK-cells.
I won't try boosting the cells unless it is proven to be helpful; if and when treatment becomes available.
That's what you get when using a normal word "functional" and give it the opposite meaning: "dysfunctional."
It's a real disease say psychologists, doctors shrug it off.
BPS'ers using fMRI might have bitten off more than they can chew.
I imagine Walitt scrambling all 70+ co-authors to find out...
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