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Discussion on previous CFS patients eg Fukuda defined which dont fit with IOM defintion

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
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

Scarecrow 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:
  1. 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?
  2. 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?
Which Nielk responded

[
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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.
 
Last edited:

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
@Nielk I personally think it may not be fair to that Fukuda group who have now been left in the situation of not having a diagnoses.. this could bring with it being cut off disability pensions etc. Just cause they dont have post exertional fatigue, it doesnt mean they may not be quite sick.

I think a new name has to be given to that group which now dont fit with the new criteria (this doesnt mean it should be at all included as a subgroup with the new definition). Unfortunately it would be new "waste basket" diagnoses illness which would include in it lots of people with missed diagnoses in it but the thing is there may be illnesses unknown to science yet within that group and having a waste basket group would put those people together even if they are with others which have been missed with many other things.

To not give those people a name when some of them may have things unknown to science and need some form of group to fall into in the meantime... and leave them in the lerch one could say with being kicked off disability etc as now they dont have anything..... I dont think would be a good thing. (It probably just allows governments to possibly kick a whole lot of sick people off of pensions).
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
Thanks @taniaaust1

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
.
That wasn't what I was getting at at all.

There will be implications for Fukuda patients without PEM, one way or another. I did not imply that the IOM criteria be amended to include them, nor do I think that they should. The train of thought you refer to is not mine.
 

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
To not give those people a name when some of them may have things unknown to science and need some form of group to fall into in the meantime... and leave them in the lerch one could say with being kicked off disability etc as now they dont have anything..... I dont think would be a good thing. (It probably just allows governments to possibly kick a whole lot of sick people off of pensions).
Very true.

But on the other hand, the exclusion from a ME/CFS (SEID) diagnosis could be a benefit to some. If they were given the initial CFS diagnosis from lazy doctoring, they may be re-evaluated and correctly diagnosed with something else.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Yeah.. that's what I was thinking too. A wastebasket diagnoses would be certainly bad for some (thou a good thing for possibly others).

That wasn't what I was getting at at all.

There will be implications for Fukuda patients without PEM, one way or another. I did not imply that the IOM criteria be amended to include them, nor do I think that they should. The train of thought you refer to is not mine.

I think Nielk may be worried that it could be used as a reason to just put them all back in. I have the same fear too that things we say like that could be twisted and used to put things back to how they were.
..........

I still think we need to push for whatever feels right and not base our responses on fears...