Holmsey
Senior Member
- Messages
- 286
- Location
- Scotland, UK
Really tired today and so I haven't copied the comments to which I refer, if you recognize anything feel free to reply, thanks.
There are a number of comments which quote critiques of the 'profile test'. If I read the latest paper correctly then it shows the results of a control group verses a patient group with quite clear differences in results, if I recall there's only one patient with an overlap into the control group results set. Criticism of the science aside, surely this shows there's something significantly different happening?
If you don't accept this then are you saying that the results are being misrepresented, or worse, are fictitious?
Surely we should be on board for anything which shows us to be different in any respect to a control group, whether or not the best method was used is to me irrelevant as I can't see any way to develop a flawed test which still manages to successfully differentiate the two. Such a test, something the NHS does not possess, and for many of its practitioners cannot exist (as we aren't really ill), is surely worth our support until hard science shows otherwise.
Surely for now it's more important to establish what the tests do show, than simply to support any group of nay sayers on the basis that more work hasn't been done, or because the NHS doesn't use the test.
Re. the NHS: I did this profile test about two years back, incredibly poor results were forwarded to my GP, having allowed him to review them I asked to be referred to whichever specialist in the NHS would deal with mito problems, he inquired through the general medical specialists offices and was told that for my NHS area there was no one who could help. Hardly a surprise to me then that the NHS don't use these tests, in my area they don't even have someone who knows which tests to order. NHS, hell I haven't even been offered CBT or GET so why would I judge anyone else based on what that shower of back slapping tax sapping witch doctors do!
Like others the interventions offered on the back of the tests saw initial improvement, a plateau and then a decline but despite that, and despite the financial outlay I'm still not about to criticize a self funded study by a group who clearly want to advance the science of my illness, not until someone has science akin to that offered post XMRV which shows that there's nothing in it. And frankly, even then, I applaud the effort.
There are a number of comments which quote critiques of the 'profile test'. If I read the latest paper correctly then it shows the results of a control group verses a patient group with quite clear differences in results, if I recall there's only one patient with an overlap into the control group results set. Criticism of the science aside, surely this shows there's something significantly different happening?
If you don't accept this then are you saying that the results are being misrepresented, or worse, are fictitious?
Surely we should be on board for anything which shows us to be different in any respect to a control group, whether or not the best method was used is to me irrelevant as I can't see any way to develop a flawed test which still manages to successfully differentiate the two. Such a test, something the NHS does not possess, and for many of its practitioners cannot exist (as we aren't really ill), is surely worth our support until hard science shows otherwise.
Surely for now it's more important to establish what the tests do show, than simply to support any group of nay sayers on the basis that more work hasn't been done, or because the NHS doesn't use the test.
Re. the NHS: I did this profile test about two years back, incredibly poor results were forwarded to my GP, having allowed him to review them I asked to be referred to whichever specialist in the NHS would deal with mito problems, he inquired through the general medical specialists offices and was told that for my NHS area there was no one who could help. Hardly a surprise to me then that the NHS don't use these tests, in my area they don't even have someone who knows which tests to order. NHS, hell I haven't even been offered CBT or GET so why would I judge anyone else based on what that shower of back slapping tax sapping witch doctors do!
Like others the interventions offered on the back of the tests saw initial improvement, a plateau and then a decline but despite that, and despite the financial outlay I'm still not about to criticize a self funded study by a group who clearly want to advance the science of my illness, not until someone has science akin to that offered post XMRV which shows that there's nothing in it. And frankly, even then, I applaud the effort.