Action for M.E. response to the IoM report

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Valentijn

Senior Member
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15,786
Pretty good, overall. Maybe AfME is starting to get a clue?

Their biggest criticism was the name SEID, even though no one wants to keep CFS. So they don't support changing ME to SEID, but it was never about that in the first place. It's intended to replace Fukuda CFS, not CCC/ICC ME.
 
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rosamary

Senior Member
Messages
131
Valentijn said:
Pretty good, overall. Maybe AfME is starting to get a clue?

Their biggest criticism was the name SEID, even though no one wants to keep CFS. So they don't support changing ME to SEID, but it was never about that in the first place. It's intended to replace Fukuda CFS, not CCC/ICC ME.
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I think it HAS 'a clue' but isn't entirely sure how to proceed at times.

I think this quote from a patient is good:

'“There is too much emphasis on fatigue which is not specific enough and has been used to water down the perception of the range of diseases by clinicians, researchers and the media.”

It (SEID, ME, CFS, somatoform illness, PVFS) is not one disease. Let the psyches extract the people with psychological illness and focus on the remaining diseases.
 
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Dolphin

Senior Member
Messages
17,567
Valentijn said:
Their biggest criticism was the name SEID, even though no one wants to keep CFS.
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It's a pity more people don't make clear that they prefer to SEID to CFS even if they prefer ME to SEID.

I have to say I'm frustrated/annoyed that we have an opportunity to get rid of "Chronic Fatigue Syndrome" and it may be lost because people can't see the woods from the trees. "Chronic Fatigue Syndrome" lends its to be mixed up with "Chronic Fatigue". It has allowed rubbish definitions to be used: the Oxford criteria, the Empiric criteria (Reeves et al., 2005) and the Fukuda criteria (although I don't see this as bad as the other two). "Systemic Exertion Intolerance Disease" ensures that post-exertional malaise/symptoms has to be part of any criteria associated with the name. This should be what we want but the opportunity may be missed.

I can see why a charity won't go with SEID with all the anti-SEID views being expressed.
 
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duncan

Senior Member
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2,240
For me, any clinician, researcher, or charity that recommends anything that emphasizes or amplifies the fatigue component - including keeping it the name when we've an opportunity to rid ourselves of that pernicious and unforgivable anchor pulling us down - invites at the very least the community's scrutiny . We have an opportunity to rid ourselves of that reprehensible and misleading lie of a name, that bane to progress. I say grab that opportunity and promote it and don't let go.

Perhaps SEID will merely be a segue. That it's just a stepping stone as we move forward and rid ourselves of toxic labels. And it may well be replaced with something more appropriate, maybe even ME in a sorta retro fit of accuracy and irony.

But deep-six CFS. If not for us, for those who follow.
 
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Denise

Senior Member
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1,095
re. "Systemic Exertion Intolerance Disease" (SEID) over "chronic fatigue syndrome" - I agree @Dolphin. We have the opportunity to change the name and this name includes PEM as a requirement.

I have no illusion that the IOM report is perfect but "perfect can be the enemy of good".
Perhaps we should take the IOM report and name and use them as the foundation of better things.

I have no desire to be stuck with the status quo for even one minute longer.
 
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medfeb

Senior Member
Messages
491
Valentijn said:
Their biggest criticism was the name SEID, even though no one wants to keep CFS. So they don't support changing ME to SEID, but it was never about that in the first place. It's intended to replace Fukuda CFS, not CCC/ICC ME.
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I think there are open questions on what was intended that still need to be resolved. From what I understand currently, SEID is intended to replace both a diagnosis of CFS and a diagnosis of ME for those patients who meet SEID criteria. How that impacts the patient cohort that used to be described by Fukuda is conceptually understandable, as long as the criteria can be reliably applied by non-experts. But how that impacts the patient cohort currently identified by CCC is not as clear, at least to me.
 
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Valentijn

Senior Member
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15,786
medfeb said:
I think there are open questions on what was intended that still need to be resolved. From what I understand currently, SEID is intended to replace both a diagnosis of CFS and a diagnosis of ME for those patients who meet SEID criteria.
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As far as the government agencies are concerned, and insurers, and most doctors, there is no "ME" in the US and there never has been. There has only been CFS, encompassing both ME symptoms and broader chronic fatigue symptoms. The CCC has never been officially used or acknowledged in the US.

So how on earth is SEID replacing something which isn't even acknowledged to exist? It's not going from ME to SEID, or ME/CFS to SEID, or even CFIDS to SEID. It's only changing Fukuda CFS into SEID.

Getting ME, CCC, or ICC at all acknowledged in the US is a battle which is still being fought - it had never been won. Hence SEID cannot be undoing some progress which has never yet been made. But I do think SEID helps lay the groundwork for making that progress in the near future.
 
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medfeb

Senior Member
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491
CDC uses the term "CFS", NIH uses the term "ME/CFS" and from what I've seen, FDA uses the term "ME and CFS." Fukuda is CDC's official definition but they also list ME-ICC and CCC which they conflate with the CFS definitions. The CCC has been used in studies and experts have acknowledged using it in diagnosis although they primarily then assign a CFS diagnosis in the medical records.

The statement that SEID is intended to replace both a diagnosis of CFS and a diagnosis of ME for those patients who meet SEID criteria came from an IOM panel member. As I understand the statement, the intent was to remove patients who meet SEID criteria from the both the cohort of patients who meet Fukuda/Empirical criteria and those who meet ME-ICC/CCC criteria.
 
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Valentijn

Senior Member
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15,786
allyann said:
Ok, I am lost. If I was diagnosed using CCC with CFS in Australia, which one would it now be under the new IOM recommendations ME, ME/CFS or SEID?
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The IOM doesn't hold any official weight yet, and certainly not in Australia. It's still Fukuda CFS in the US, and something similar in Australia.

If the IOM recommendations are implemented by the NIH, someone who satisfies the CCC criteria would almost certainly be diagnosable with SEID. ME/CFS or ME wouldn't be used in anything official, because the US government is currently pretty opposed to it.

But doctors and researchers and patients can still call it whatever they want: CF, CFS, CFS/ME, CFIDS, ME/CFS, ME, SEID, etc etc. They just might have to call it something else if they need to use an officially recognized name or code.
 
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