13 Nov 2017 | Tuller & Lubet: 'Trial By Error: The Surprising New BMJ Best Practice Guide'

Personally, I don't take firm positions on the criteria stuff at the moment. That also seems a mess.
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@Esther12, I hear you about not taking a firm position on the criteria stuff as all a mess too. However, what is your opinion that pem in Fukuda is not mandatory for a diagnosis? Surely this means that Fukuda is going to select very mixed patient cohorts?
 
anniekim said:
@Esther12, I hear you about not taking a firm position on the criteria stuff as all a mess too. However, what is your opinion that pem in Fukuda is not mandatory for a diagnosis? Surely this means that Fukuda is going to select very mixed patient cohorts?
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I can see the benefit of requiring PEM, and it seems like this symptom should be useful for distinguishing 'CFS' from a number of other conditions which cause fatigue... but even there, it seems that different people have different ideas about what PEM is, how it should be diagnosed, etc.

Also, it could be that different people with 'CFS-like' symptoms will have the same cause of ill-health, but some will have PEM and some will not, while those from another group with a different cause of ill-health will also have some with PEM and some without. When so much is uncertain I can see the benefits of using very loose criteria in order to conduct research to identify sub-groups... but I'm also aware of the history where very loose criteria have been used as a part of very poor quality research that has harmed patients, and risked leading to missed opportunities. So long as researchers fail to address that history I think it's reasonable for patients to be particularly wary of any further research using loose criteria.

I have to admit that my thoughts on this are a bit of a mess, and I don't really know what I'm talking about or how best to proceed. For now it seems sensible to require PEM for research studies, but I still think it's possible that in the future we will decide that this was a mistake.
 
anniekim said:
@Esther12, sorry not ignoring your final reply. But typing limited and PIP benefit form arrived last week so unable to comment on here currently.
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Don't feel you have any responsibility to reply at all! I'm sure that I often let threads of a discussion drop just because I forget about them. Sorry to hear about your PIP burden, and very best of wishes with it all.
 
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