ESME - The Most Effective Rated Treatments for Chronic Fatigue Syndrome - Norway

Wonko

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Doh!!! (to the study) - they actually had to 828 pwME to find this out?

10 hours deep sleep? wonderful idea - any idea's how to accomplish this given that a lot (if not most/all) pwME cant?
 

heapsreal

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still searching for ways to get 10hrs sleep. Funny thing is, I have just gotten out of bed because i cant fall asleep and i took a seroquel 2 hours ago. Its really hit and miss, i only use it occassionally like no more then once a week and it either gives me that 10hrs or doesnt work, u guessed it tonight it doesnt want to work. lol
Doh!!! (to the study) - they actually had to 828 pwME to find this out?

10 hours deep sleep? wonderful idea - any idea's how to accomplish this given that a lot (if not most/all) pwME cant?
 

taniaaust1

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heapsreal .. well you can have some of my bodies response to seroquel. If i take even half of the very lowest dose of that at night.. i dont end up being able to get up till lunch time the next day, so i cant take as it works for sleep too well. It is almost as bad at taking ones life away as the CFS :p
 

toddm1960

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Does anyone know why more research and research dollars have not gone into mitochondrial defects? I'm confirmed mito disease but it took 6 years to get a doctor to refer me and the insurance company to approve it.
 

jimbob

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All the time they wasted on this rediculous study could have been used to do something that really might have helped us. It reminds me of all these scientific studies that I see on the news from time to time where they waste time and man hours on trivial crap, instead of doing something productive. It makes my low blood level boil!!!!!!!
 

Dolphin

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This was a paper study - it wouldn't have been that expensive. It is different from trials that cost millions.

This found high rates of adverse events were associated with exercise programs - it can be useful to have data from different countries that show this. This one shows up in PubMed so may get noticed more than a lot of surveys.
(I wasn't involved by the way).
 

Dolphin

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Does anyone know why more research and research dollars have not gone into mitochondrial defects? I'm confirmed mito disease but it took 6 years to get a doctor to refer me and the insurance company to approve it.
We're going a bit off-topic here but p.11
http://www.meresearch.org.uk/information/breakthrough/Breakthrough_Spring2009.pdf may be of interest (a little).

One problem with ME/CFS is that there hasn't been that much biomedical research in general. For example, I think there may only ever have been one biomedical study of any sort in the Rep. of Ireland - a country that has now nearly 4.5m people. Only in the last 5-10 years have the ME/CFS community really started to raise much money for research (and only in some countries).
 
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Never thought about 'shielding', I just do it without noticing now, ie: I don't sit downstairs because a) going up and down the stairs is shattering and b) just having the extra noise of my family/the tv makes me crash/get overloaded. c) I close curtains most of the time because all the light is shattering too. Never heard the term shielding though, handy to know!
Also I think it's good these surveys are taking place as it can be shown that get/cbt are mostly harmful.
 

*GG*

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Doh!!! (to the study) - they actually had to 828 pwME to find this out?

10 hours deep sleep? wonderful idea - any idea's how to accomplish this given that a lot (if not most/all) pwME cant?
Sleep study, medications and/or sleep hygiene, natural supplements also? I have done all of these and am sleeping this amount of time, Where does the day go!