Bob
Senior Member
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- 16,455
- Location
- England (south coast)
Does anyone else see the irony of our discussion in this thread?
I think we could be easily accused of double standards, by people who don't understand the issues, or who prefer not to understand the issues.
We rightly complain about Fukuda, and Oxford, because they can select patients with major depression, or other psychiatric problems. (i.e. they do not have enough specificity, and are too heterogeneous.)
And now we have a problem because a researcher has found that the ICC apparently selects more patients with psychiatric issues than Fukuda.
Obviously, some of us (myself included) wish to defend the ICC, because we hope it will be useful for research purposes, and we assume that it will be more selective for ME patients, as opposed to patients with idiopathic chronic fatigue, or chronic fatigue with a psychiatric basis.
However, to an outsider, this may look like us wanting to have our cake, and to eat it. And our position might appear to be contradictory, and unscientific.
As per usual, it all boils down to a dearth of research; in this case specifically into the nature of the cognitive and neurological symptoms of ME, which have been widely dismissed as psychiatric in origin over the years.
Watching the FDA videos gave me quite a lot of hope. They were discussing symptoms and illness in an entirely 'medical' framework, which (sadly) isstill quite novel an entirely novel experience for people in the UK.
Call me an optimist, but I think the FDA event is part of the sea-change that I sense taking place, in more than one country.
I think we could be easily accused of double standards, by people who don't understand the issues, or who prefer not to understand the issues.
We rightly complain about Fukuda, and Oxford, because they can select patients with major depression, or other psychiatric problems. (i.e. they do not have enough specificity, and are too heterogeneous.)
And now we have a problem because a researcher has found that the ICC apparently selects more patients with psychiatric issues than Fukuda.
Obviously, some of us (myself included) wish to defend the ICC, because we hope it will be useful for research purposes, and we assume that it will be more selective for ME patients, as opposed to patients with idiopathic chronic fatigue, or chronic fatigue with a psychiatric basis.
However, to an outsider, this may look like us wanting to have our cake, and to eat it. And our position might appear to be contradictory, and unscientific.
As per usual, it all boils down to a dearth of research; in this case specifically into the nature of the cognitive and neurological symptoms of ME, which have been widely dismissed as psychiatric in origin over the years.
Watching the FDA videos gave me quite a lot of hope. They were discussing symptoms and illness in an entirely 'medical' framework, which (sadly) is
Call me an optimist, but I think the FDA event is part of the sea-change that I sense taking place, in more than one country.