Persimmon
Senior Member
- Messages
- 135
Just pondering a hypothetical question - where would ME be if the CDC had not intervened at all, or else had played a neutral role?
Most of us would hold the view that the CDC's intervention (since the mid-1980s) has been harmful: that their actions have contributed to the deligitimisation of very real disease and undermined serious research into that disease.
Putting aside the possibility that they could have actually fulfilled their legal mandate in the context of ME, imagine a world where the CDC had (since the mid-1980s) neither actively assisted our cause, nor got in the way of those willing to try to help. Imagine they had not done anything to directly harm us. This is a world in which:
- The name CFS had never been invented;
- The CDC had not initiated the Holmes, Fukuda or Empirical sets of diagnostic criteria;
- CDC and NIH staff had not gone around the country making fun of 'CFS' or ME;
- The CDC had not disseminated misleading information about ME (eg through their website);
- Researchers had never been pressured/obliged to use diagnostic criteria they knew (or should have at least suspected) to be flawed, if such questionable criteria had existed at all.
So where would ME research be now? More advanced? More heavily researched? Having followed a different path?
Would we still be so widely ignored within the medical world?
Would there still be institutional bias (eg against publishing studies on ME; discrimination against researchers wishing to research ME)?
Would we be treated any better (by doctors; in terms of community empathy & support)?
Would the Wessely-ites have got as far in their campaign?
Would we all be considered to have ME?
What you you think?
Most of us would hold the view that the CDC's intervention (since the mid-1980s) has been harmful: that their actions have contributed to the deligitimisation of very real disease and undermined serious research into that disease.
Putting aside the possibility that they could have actually fulfilled their legal mandate in the context of ME, imagine a world where the CDC had (since the mid-1980s) neither actively assisted our cause, nor got in the way of those willing to try to help. Imagine they had not done anything to directly harm us. This is a world in which:
- The name CFS had never been invented;
- The CDC had not initiated the Holmes, Fukuda or Empirical sets of diagnostic criteria;
- CDC and NIH staff had not gone around the country making fun of 'CFS' or ME;
- The CDC had not disseminated misleading information about ME (eg through their website);
- Researchers had never been pressured/obliged to use diagnostic criteria they knew (or should have at least suspected) to be flawed, if such questionable criteria had existed at all.
So where would ME research be now? More advanced? More heavily researched? Having followed a different path?
Would we still be so widely ignored within the medical world?
Would there still be institutional bias (eg against publishing studies on ME; discrimination against researchers wishing to research ME)?
Would we be treated any better (by doctors; in terms of community empathy & support)?
Would the Wessely-ites have got as far in their campaign?
Would we all be considered to have ME?
What you you think?