ME/SEID - a more accurate illness name than ME/CFS? (words only, nothing to do with diagnostic criteria)

cassava7 said:
Besides the classification issue with SEID (or lack thereof) that @Dx Revision Watch described very well, two things to note:

- intolerance to exertion is not specific to ME, it also happens in severe forms of a number of diseases: myopathies, COPD, cardiovascular & genetic conditions...

- intolerance to exertion can easily be mixed up with intolerance to exercise

Eventually it always boil down to the same fact: the root cause of ME must be identified, or at least a diagnostic biomarker.
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Fatigue is an even less specific term.
 
“Chronic Fatigue Syndrome” basically allows for criteria that don’t require post-exertional malaise/post-exertional neuroimmune exhaustion e.g. Oxford and Fukuda. With “Systemic Exertion Intolerance Disease”, it’s much easier to argue that research and clinical criteria should require this symptom and research studies not requiring this symptom be excluded.
 
It was largely patients and patient groups who started using “ME/CFS” with official entities using CFS and occasionally “CFS/ME”. Now lots of clinicians, researchers and official agencies use “ME/CFS”.
 
Dolphin said:
Using the argument that one should only use terms that have coding would seem to condemn us to existing terms in perpetuity.
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I agree.

On the other hand the BPS publicity arm a.k.a. the SMC will continue to use those terms in news articles.

I have had specialists agree that the name is a nightmare, but if they are writing to my GP or reports for employers or insurers they need to use the common terminology.

This is why I wonder if focusing on the handicaps caused by the illness rather than the symptoms might be better when talking about the illness in the media or with pals.

We can spend a lot of time discussing the name, but without a biomarker or a clear diagnostic pathology the new preferred name, should we ever all agree, will simply be hijacked and diluted. We have evidence of this in the past- CFS became CF, even terms like pacing were twisted into different meanings.

Edit - it also seems to me that PEM, even though we are barely coming to grips with it and how it works ourselves, seems to have been appropriated by other groups using it to describe a phenomenon that isn't necessarily the same.
 
Dolphin said:
Fatigue is an even less specific term.
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Dolphin said:
“Chronic Fatigue Syndrome” basically allows for criteria that don’t require post-exertional malaise/post-exertional neuroimmune exhaustion e.g. Oxford and Fukuda. With “Systemic Exertion Intolerance Disease”, it’s much easier to argue that research and clinical criteria should require this symptom and research studies not requiring this symptom be excluded.
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Indeed. The IOM committee probably wanted to insist on the biological nature of ME, and using "exertion intolerance" instead of "fatigue" also subtracts many possible (but maybe not all) psychological/psychiatric interpretations of the disease. In that sense, SEID clearly is a better term than CFS, but unfortunately from a scientific perspective it is still not specific to the disease.
 
Dolphin said:
Using the argument that one should only use terms that have coding would seem to condemn us to existing terms in perpetuity.
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If you live in the U.S., ICD-10-CM codes are essential for billing, reimbursement, medical insurers etc. NCHS-CDC aren't going to change their ICD-10-CM codes just because patients have started using a preferred term.

I have to say, Dolphin, that I am surprised you would promote the use of a term which remains an unadopted Recommendation by an external ad hoc committee, 5 years ago.

SEID hasn't been adopted in the U.S. It hasn't been field tested outside the U.S. The term "SEID" and its associated criteria is meaningless outside the context of the IOM external committee who had included the term in its Report's Recommendations.
 
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And exactly what is your "SEID", Dolphin?

Is it defined by the suggested criteria in the IOM Report (which Jason et al have published considerable concerns about) or are you setting aside the panel's suggested criteria and focusing only on the term, per se?
 
It would be another fudge. But it's not the fact that it's a fudge that causes harm. It's the words within the fudge.

I'll leave that there, as it becomes circular.
 
@InfiniteRubix

There is a You tube link to the 2017 talk Dr. Lenny Jason gave to the Ethical Humanist Society of Chicago on "Understanding Unexplained Illness: From Knowledge to Action"

At approximately the 29:30 minute point, Dr. Jason talks about the ME community's negative reaction to the term SEID; some in the audience laugh at this term.

Please see under "Talks and Interviews" on MEpedia's page about Dr. Jason, and his talk on January, 2017:

https://me-pedia.org/wiki/Leonard_Jason

ETA: when I checked the You tube link I posted here, there are two differently timed versions of this talk going at the same time. Attempted correction - it didn't work. Therefore, I removed You tube link.

ETA #2: Dr. Jason's talk is excellent: covers some of the history, and does delve into criteria.
 
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DokaGirl said:
@InfiniteRubix

There is a You tube link to the 2017 talk Dr. Lenny Jason gave to the Ethical Humanist Society of Chicago on "Understanding Unexplained Illness: From Knowledge to Action"

At approximately the 29:30 minute point, Dr. Jason talks about the ME community's negative reaction to the term SEID; some in the audience laugh at this term.

Please see under "Talks and Interviews" on MEpedia's page about Dr. Jason, and his talk on January, 2017:

https://me-pedia.org/wiki/Leonard_Jason

ETA: when I checked the You tube link I posted here, there are two differently timed versions of this talk going at the same time. Attempted correction - it didn't work. Therefore, I removed You tube link.

ETA #2: Dr. Jason's talk is excellent: covers some of the history, and does delve into criteria.
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Many thanks indeed for digging this out!

That settles that. But I think that it's the mouthful of words that made people chuckle, I think....?

Difficult to objectively say. But it doesn't make me positive about it.
 
DokaGirl said:
@InfiniteRubix

There is a You tube link to the 2017 talk Dr. Lenny Jason gave to the Ethical Humanist Society of Chicago on "Understanding Unexplained Illness: From Knowledge to Action"

At approximately the 29:30 minute point, Dr. Jason talks about the ME community's negative reaction to the term SEID; some in the audience laugh at this term.

Please see under "Talks and Interviews" on MEpedia's page about Dr. Jason, and his talk on January, 2017:

https://me-pedia.org/wiki/Leonard_Jason

ETA: when I checked the You tube link I posted here, there are two differently timed versions of this talk going at the same time. Attempted correction - it didn't work. Therefore, I removed You tube link.

ETA #2: Dr. Jason's talk is excellent: covers some of the history, and does delve into criteria.
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Thanks for posting the link, not sure why it has been deleted. I believe he starts the section by saying something about it being unfortunate that a new name was proposed and was generally negative about it. Some people tend to match the lead from a speaker; it wasn’t clear to me people were independently being negative.
 
adambeyoncelowe said:
My preference would be to refine the acronym ME, if needed, in the same way fibrositis became FM.

I've sometimes wondered if myasthenic encaphalopathy (brain dysfunction characterised by muscle weakness) would be better. It still retains the ME acronym without sceptics being able to leap on it as inaccurate.

On a side note: would it be worth implementing a 'no debates about criteria outside of threads explicitly on criteria' rule? It would stop the potential derails.
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I suggest: "Mainly Existing / Crap F*ck Sh*t". I think we could all get behind that.
 
@Dolphin

Thank you for your comments. When I posted the You tube link and checked it, there were two parts of Dr. Jason's presentation running at the same time. I deleted the first link,and re-posted to try and solve this, and it did the same thing again. Therefore, I referred to the the link in MEpedia on Dr. Jason's page, under "Talks and Interviews". If someone would like to try and post this, (the You tube link) that would be great - but how to fix this is above my pay grade. :facepalm::)

ETA: Yes, perhaps the audience was taking the lead from the speaker.
I am aware of some quick, negative, and dismissive reactions when what SEID stands for is explained.
 
Dx Revision Watch said:
But "what we use in everyday language" doesn't amount to anything when patients are being coded and referred for services according to the terminology and codes in the mandatory systems in use for any particular country.
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I think that's sort of besides the point. As I said, this is a hypothetical discussion, so official WHO coding is irrelevant. This isn't about an official or formal attempt to do anything, it's just people expressing their opinions on language.
 
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DokaGirl said:
@Dolphin

Thank you for your comments. When I posted the You tube link and checked it, there were two parts of Dr. Jason's presentation running at the same time. I deleted the first link,and re-posted to try and solve this, and it did the same thing again. Therefore, I referred to the the link in MEpedia on Dr. Jason's page, under "Talks and Interviews". If someone would like to try and post this, (the You tube link) that would be great - but how to fix this is above my pay grade. :facepalm::)
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He also gives the wrong name in the slide: he uses "systemic exercise intolerance disease".
The way he says it, people or at least some people could be laughing at a new name being proposed rather than the specifics of the name.
 
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