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Survey Results: Evaluating a Proposed Name to Replace "ME/CFS

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1,446
@Sean - .you quoted me under 'Wildcat said' in your last post. Can you clarify in your post that the other quotes you highlighted in your post are not from me. Thanks x
 
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Sasha

Fine, thank you
Messages
17,863
Location
UK
Clearly, there is a great chasm in how people are interpreting the IOM criteria and name. I know that you have read my blog http://www.meadvocacy.org/iom_seid_analyzed_meadvocacy_org_clarified. It outlines the reason why many of us do not accept the IOM criteria and name.

The pros and cons of the IOM report have been discussed extensively on this forum in recent weeks so I'll not rehearse them again on this thread. I don't think there's a chasm so much as a continuum of opinion, though.

Neilk said:
I, and many others (the majority as per this poll) do not like the name SEID.

The problem with polls on this topic have also been rehearsed. But the issue here is whether pursuing a perfect name risks scuppering the IOM report in toto.

Nielk said:
If your argument that no matter what we do, HHS will never listen to us is true, then why fight for more funding? We all have begged for that in the past three decades. How many CFSAC recommendations have asked for more funding? Why should they listen now?

No, that's not my argument. My argument is that we don't have total control, not that we don't have any influence. I think it's likely that the 50-clinicians letter helped get a good IOM committee and helped raise awareness of the issues to inform the report, as did all the letters and emails that patients sent in. The latter was acknowledged, if memory serves. And that input is reflected in the inclusion of PEM front and centre, among many other things.

You're involved in campaigning for the ME name and CCC/ICC criteria but you can't control the outcome. You don't know what your campaign will result in and you've already got plenty of evidence that pushing for ME/CCC/ICC hasn't worked. Specifically, you've got no guarantee at all that you won't push the US back to CFS/Fukuda. The latter would be disastrous, in my opinion.
 
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Sean

Senior Member
Messages
7,378
Although patients understand what each word in the name stands for, the world at large will make fun of it.
Coz they showed such respect to the ME name over the years?

They are going to laugh at us no matter what name is used, and have been doing so since I first got into this lark. That is not going to change anytime soon.

The Fukuda lacks in that they don't include PEM as a mandatory system but, unfortunately PEM cannot be safely tested as of yet. Relying on patients' subjective answers about PEM is not adequate.
If you are going to reject a criteria with PEM at its core, I don't know what to say. It is the one thing I most wanted in a criteria as a mandatory requirement.
 
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Sean

Senior Member
Messages
7,378
The Fukuda lacks in that they don't include PEM as a mandatory system but, unfortunately PEM cannot be safely tested as of yet. Relying on patients' subjective answers about PEM is not adequate.
I suggest that the single best way to get funding for studying and developing clinically useful tests for PEM, is to put it at the centre of the criteria.