taniaaust1
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I thought Id start a thread for discussion of this seeing comments in http://forums.phoenixrising.me/inde...to-an-iom-committee-member.35760/#post-562215 are about to take the other thread off discussion.
Scarecrow made the following comment in posing questions to IOM
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Scarecrow made the following comment in posing questions to IOM
Which Nielk respondedScarecrow said:The committee were unable to distinguish between subgroups within ME/CFS yet by excluding Fukuda CFS patients without PEM from the new diagnostic criteria for ME/CFS, an element of subgrouping was done. My question is in two parts:
- Did the committee conclude that Fukuda CFS patients without PEM had been misdiagnosed with CFS and was any consideration given to what will happen to these patients?
- In stating that they were unable to distinguish between subgroups and calling for more research, did the committee have a sense that there are subgroups within ME/CFS but that there was insufficient evidence at this time?
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There are people who were diagnosed with Fukuda who do not experience PEM who will be left out of SEID diagnosis.
They will be left without a diagnosis. Should we then amend the IOM criteria making PEM a choice so that everyone can be included?
Can you see how this train of thought will end up including people who don't have the same disease? At some level there needs to be exclusions to properly define a disease.
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