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thanks tis a name in uk for both sexes. interesting that they are runing atp profiles on both. another area of research mito function that edwards does not see as evidenc for pem. thanks for clarifying but i doubt i will stay on this forum because of jonathon edwards.

@Jonathan Edwards i am finding this tiresome, and a tad upsetting too, having been told all my illness was in my mind i saw a whole batch of specialists with many tests. now i have the delight of you denying this too. i a concerned that you don't understand enough and are not willing to read...

the smaller meals and no added sugars epecially added sugars will be helping you. you are keeping your insulin levels even and not spiking up and down the way you were eating before could have benn reactive hypoglycemia. also mood changes with high sugar rush and then crash

well janet dafoe has one son with eds and another we know more about who has m.e. she stated this on twitter and is very interested in the connection a very good video from dr grubb a pots specialist in usa discusses both cfs me as he puts it and also eds pots patients. what is great is...

its okay to ask questions but you are still referring to eds 3 and there is a long document with research and published data with the new names, i need you to read some of this as i am not well enough to spend hours educating you. i gave you the link. its a lot to take in i understand but makes...

surely if you are working from the 2017 guidelines you would know the answer to this question??

how many types of eds are there?

there is a hugh drive and new nosology which goes into this. its international drs not just those quoted above. its a lot of information. eds 3 does not really exist anymore. i will post the links to research which may help you. i will do one post wtih the links. but i can say my prayers...

pretty ill here mr edwards but you can research on the eds groups and find the links to the research and lots of info. ps if you are working from those guidelines you need to look at the way the hypermobility and eds3 have been discussed and defined. it is stated in those guidelines. joints...

yep known someone with Behcets for many many years mis dx with me and fitted the canadian and other guidelines too

mr edwards you may need to refresh your evidence and knowledge from 1978 there has been a lot of work done on the eds spectrum and nosology had been created in 2017 so a lot of what you are declaring here mr edwards is completely outdated and even the term eds 3 is now not correct term to...

it has been a long battle against the uk gov. the used the bps on us pwme and nobody listened so now they are using it on others in disability benefits many mental health have sucided and others too. grass roots orgs are fighting for the numbers and details held by gov on those who have died...

i think there is something very wrong with our attitude to kids and schooling, also adults and being ill. we favour the push through it and you are a hero. or don't go to school start legal action. when i had ebv i was advised to rest and bed rest for a couple of months at least. i...

yes re @cope i hope so. hope they are taking seriously. have not enough energy to reaad the whole thing. sw has written a letter in reply to the independent article. saying he was edited down in the don't give benefits out. quote a discussion on the >> dangers of prematurely assuming that...

now how can we get some case studies on argentinian patients for drs to look at. this drug def helps some. i remember reading the research when it was up a few years ago. there was some test trial some inc mary perhaps were involved in, what happeed to that?

i can't follow to well atm. how is it going with ireland and the drug? i thought that was being applied for.

as i said ghastly woman. kids and families living in fear of being taken away. forced into treatments where full concent is not given. as no body tells the parents or children that these treatments can harm. perhaps thats what we should concentrate on more. the informed consent of both...

yep again seen in men who have had violent childhoods learn that as their normal. so replicate that in later relationships. a lot of red flags yr right however its the story telling and how she grips the audience into her spell. the way that reflects on those parents. how she relates that...

action for me have been woke for a long time now. lets see hmmm we wouldn't have had pace if they hadn't backed it. lets hope corporate sponsosr was more caring and woke with recent press. afme fully know what they are doing. though i would not be surprised if this was spin. to fool public...