Nielk
Senior Member
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I would like to get some view/opinions regarding some questions about the IOM study. The results will be used as part of my comment to the first meeting of the IOM study
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i oppose the contract but cant see an option for that.
i dont yet know how i feel about the CCC etc.
I have just been reading CCC criteria is for CFS and ICC for M.E.
good poll idea.
i am certain i oppose the contract. I would like a plain and simple option for this if at all possible.
i no longer support the CCC (even though i originally passed a copy through to my G.P.
However if its 'politics' i might be open to it. But probably not.
if anyone can give me a cliff notes version of each groups politics and agenda that would be helpful.
i have learned a lot since joining the forum - i knew of no m.e. politics beforehand.
but most of all i should like an unbiased summary of where Dr.Hyde and his team of experts fit in who obtained clinical evidence in hospitals about M.E.
are these experts wanting the CCC not in alignment with the Dr.Hyde experts?
i sincerely apologise for my clumsy questions, i don't even know if i am treading on anyones toes.
Since its about politics it made me ask:
what would Gandhi do?
probably not attend and refuse to acknowledge the authority of the contract?
i also did wonder if this really should be anything to do with non-us citizens ?
best
golden
I agree with Alex above. I think the first option is unfairly biased. Time has moved on and we are not now where we were before the contract was confirmed. The chances of it being cancelled are minimal I would suggest - but I could of course be proved wrong. Experts are on the panel. I am editing an article at the moment so can't write more. I voted for the second option, rather than abstain, though I also happen to think that something like this needed doing. It could have been handled better, a similar exercise may not even have resulted in the CCC in its' entirety being adopted, but a national definition that improves upon Fukuda, and it accepted and used by all physicians is, in my non-US citizen view, needed in the US, as is a new and better name.
I note an overwhelming response to the first option so far, but I am also aware we could be seeing a response bias ... those who are opposed to the IOM contract and support our experts are responding.
Because you use the word 'now' I guess and because the experts letter was sent at the beginning of the process/affair. It may be that if you went back to all those experts again, where we are today, and asked their opinion would be different.
I may be that if you got all those experts in a room, round a table, the definition for the USA they came up with would not be CCC.
And, as Alex intimated, but also because I personally think people when asked will ever oppose something the 'government' is said to have done, and that 'their' experts are said to have opposed, without really knowing much about the issues involved.
There has been and will continue to be a lot of interpretation in this affair. Some helpful, some not. I have lost the plot and don't mind admitting it. But I would rather see the 'patient community' be proactive than oppose for opposition's sake.
When NICE was on the table - opposition was rife - but (and controversially) I still like to think that the result was better for positive patient input in the process than it would have been without.
Can I also make the point - and I know you wouldn't do this - but when citing a survey in a letter or should it appear in the Phoenix Presentation: you are careful to note the number of people who took part i.e. ensure that it is not stated that this is a representative survey of Phoenix members or of the community? Thanks.
Surveys are needed I think, and I wish we had perhaps done some before when this was all building up to the public meeting. Indeed it might have helped to inform the Phoenix presentation. Though I have to say that I would have struggled to come up with fair questions!
But it is your survey Nielk and I hope it helps you in your letter![]()
I agree with Alex above. I think the first option is unfairly biased. Time has moved on and we are not now where we were before the contract was confirmed. The chances of it being cancelled are minimal I would suggest - but I could of course be proved wrong. Experts are on the panel. I am editing an article at the moment so can't write more. I voted for the second option, rather than abstain, though I also happen to think that something like this needed doing. It could have been handled better, a similar exercise may not even have resulted in the CCC in its' entirety being adopted, but a national definition that improves upon Fukuda, and it accepted and used by all physicians is, in my non-US citizen view, needed in the US, as is a new and better name.