Poll: Which name is better: Chronic Fatigue Syndrome or Systemic Exertion Intolerance Disease?
- Thread starter Dolphin
- Start date
It wasn't an option based on what HHS wanted.
If people want one or more polls on M.E. they can have them. There is already this poll, for example: http://forums.phoenixrising.me/inde...k-of-the-ioms-new-name-for-me-cfs-vote.35450/ or if people don't like that wording they can set up their own. This poll is to ascertain people's preference between "Chronic Fatigue Syndrome" and "Systemic Exertion Intolerance Disease" and doesn't exclude that fact that Myalgic Encephalomyelitis could also get used.
At the moment, "Myalgic Encephalomyelitis" and "Chronic Fatigue Syndrome" are used. I think "Chronic Fatigue Syndrome" has caused all sorts of problems. It doesn't require post-exertional symptoms to be part of the definition so one gets weak criteria like the Oxford criteria, empiric criteria and even the Fukuda criteria.
Systemic Exertion Intolerance Disease ensures that post-exertional symptoms will be part of any definition in the future.
At the moment, "Myalgic Encephalomyelitis" and "Chronic Fatigue Syndrome" are used. I think "Chronic Fatigue Syndrome" has caused all sorts of problems. It doesn't require post-exertional symptoms to be part of the definition so one gets weak criteria like the Oxford criteria, empiric criteria and even the Fukuda criteria.
Systemic Exertion Intolerance Disease ensures that post-exertional symptoms will be part of any definition in the future.
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I previously went to a specialist (a cardiologist) to try to get help for my orthostatic symptoms (problems being upright). He was focused on getting me moving: he wanted me to get me "out of the wheelchair". I think it would be easier to direct a doctor away from that approach with a name like "Systemic Exertion Intolerance Disease" than, say, "Chronic Fatigue Syndrome".
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(from @maxwhd on Twitter https://twitter.com/maxwhd/status/567841031741431809 - he doesn't agree of course)
@maxwhd UK Chalder Crawley Collin Stearne Hollingworth May agree - CFS an illness - not a disease #mecfs #seid #IOM
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Lots of others of the CBT school of thought, or other psychobabble, wouldn't want it called a disease also.
@maxwhd UK Chalder Crawley Collin Stearne Hollingworth May agree - CFS an illness - not a disease #mecfs #seid #IOM
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Lots of others of the CBT school of thought, or other psychobabble, wouldn't want it called a disease also.
Kati
Patient in training
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- 5,497
+1000
As someone said, let's leverage what came out of the IOM report to our benefit. HHS and all the governments for that matter need to know about what the prestigious IOM said about this disease. Not benign, not in our heads, where is the funding to find cause and cure?
I know plenty of people who need home help and care services, but often struggle to get assessed as needing them.
I think they could have a better chance of being approved and getting the required amount of help with a name like “systemic exertion intolerance disease” than “chronic fatigue syndrome” (and maybe myalgic encephalomyelitis also).
I think they could have a better chance of being approved and getting the required amount of help with a name like “systemic exertion intolerance disease” than “chronic fatigue syndrome” (and maybe myalgic encephalomyelitis also).
Another survey on the name. One doesn't need to be a member of a forum to fill it in.
http://paradigmchange.me/wp/name-evaluation/
http://paradigmchange.me/wp/name-evaluation/
Amaya2014
Senior Member
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- Columbus, GA
I'm new here and new to CFS so I think there is a lot of history that I don't completely understand. What I can offer is that in the past year as this illness rapidly stole my life, I have experienced the most disgusting patient/doctor interactions imaginable. I found that many supposed "professionals" would not (or maybe could not) even bring themselves to say Chronic Fatigue Syndrome. Of those people who did have some empathy, they would quickly say "oh I know CFS" and they seemed to either believe it was a hopeless illness or they prescribe graded exercise, psychotherapy, and tell me to keep pushing myself. I became ashamed to say CFS because the reactions are akin to being spit on. As a fighter, I would like CFS to be given its due respect but if a better name could improve healthcare and save new patients from such negative experiences...Then may CFS rest in peace.
Forbin
Senior Member
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For now, my preference would be to go with ME/SEID and to call SEID "Systemic EI" in common usage.
I've tried to come up with a better alternative to "Post Exertional Malaise" than "Systemic Exertion Intolerance,"
but, so far, the best I've been able to manage is...
"Systemic Immune-like Response to Effort (Disease)" i.e. SIRE or SIRED
["Effort" seems more broadly apt than "Exertion" somehow. "Exertion" seems to suggest significant physical activity, which is not always the case.]
I've tried to come up with a better alternative to "Post Exertional Malaise" than "Systemic Exertion Intolerance,"
but, so far, the best I've been able to manage is...
"Systemic Immune-like Response to Effort (Disease)" i.e. SIRE or SIRED
["Effort" seems more broadly apt than "Exertion" somehow. "Exertion" seems to suggest significant physical activity, which is not always the case.]
Thanks - I took the survey. There's an opportunity at the end for comments and I made the point that I didn't think it was worth arguing over a placeholder name if it might undermine the report as a whole - we have too much to lose that way.
There's a big difference between preferring a particular name to SEID and wanting that preference to be the new name at the cost of the report being rejected. I don't think that people have really been appreciating that distinction as much as they should.
As I mentioned before:
Often people in the US think the name ME is better than CFS, but maybe they don't realize that in the UK the terms are more synonymous, and much of the negativity associated with CFS is also associated with the name ME. So changing to "ME" won't help much in the UK. We need to get away from any historical ties to move forward.
Proof is in the first 12 seconds of this:
Whether it's true or not, "experts" love to argue that there is no proof of the encephalomyelitis, and that's sometimes used as an excuse to ignore the disease. Why give them ammunition? At least SEID can't be ridiculed on the grounds it contains unproven pathophysiology.
SEID ain't great but we'd be foolish to not take the opportunity to get away from the woeful past.
Often people in the US think the name ME is better than CFS, but maybe they don't realize that in the UK the terms are more synonymous, and much of the negativity associated with CFS is also associated with the name ME. So changing to "ME" won't help much in the UK. We need to get away from any historical ties to move forward.
Proof is in the first 12 seconds of this:
Whether it's true or not, "experts" love to argue that there is no proof of the encephalomyelitis, and that's sometimes used as an excuse to ignore the disease. Why give them ammunition? At least SEID can't be ridiculed on the grounds it contains unproven pathophysiology.
SEID ain't great but we'd be foolish to not take the opportunity to get away from the woeful past.
I would like to caution a bit about the focus on PEM.
In my opinion, ME/SEID is a spectrum disease. Some people bed-ridden, some able to get out of the house, somee with major sleep issues, some without etc. Some with PEM lasting a month, some only a couple of hours, depending on the day, or the length of the illness. Do we really know (say) 10% of chronic Lyme sufferers don't suffer from PEM? Isn't that the whole point....that we're all on a spectrum? What is the point in trying to split a spectrum disease into two halves? Why not three? Why not in fact stop worrying about a single symptom and characterise the disease by something like this very simplified example:
PEM 1-5
Sleeplessness 1-5
Pain 1-5
Then someone with major PEM but few sleep/pain issues might appear as "SEID 522" (for example). Much easier for researchers. I know what I'm looking at when I see "SEID 522"...can't say the same for just straight "SEID".
Why are we trying to second guess whether the biomarker will correlate strongly with PEM? For example if our illness is caused by virus X, who's to say strong PEM is only caused by the presence of virus X and gene Y? What about those found to have virus X, who are ill, but don't have PEM? We may even end up with a known causative agent and treatment before anyone discovers the origins of PEM.
You just can't fit a single definition to a spectrum....it's 2015 now, we don't have to pretend all diseases can be classified as single objects...it's a very simple solution to putting the definition game behind us because a binary approach is never going to work before the biomarker is found.
In my opinion, ME/SEID is a spectrum disease. Some people bed-ridden, some able to get out of the house, somee with major sleep issues, some without etc. Some with PEM lasting a month, some only a couple of hours, depending on the day, or the length of the illness. Do we really know (say) 10% of chronic Lyme sufferers don't suffer from PEM? Isn't that the whole point....that we're all on a spectrum? What is the point in trying to split a spectrum disease into two halves? Why not three? Why not in fact stop worrying about a single symptom and characterise the disease by something like this very simplified example:
PEM 1-5
Sleeplessness 1-5
Pain 1-5
Then someone with major PEM but few sleep/pain issues might appear as "SEID 522" (for example). Much easier for researchers. I know what I'm looking at when I see "SEID 522"...can't say the same for just straight "SEID".
Why are we trying to second guess whether the biomarker will correlate strongly with PEM? For example if our illness is caused by virus X, who's to say strong PEM is only caused by the presence of virus X and gene Y? What about those found to have virus X, who are ill, but don't have PEM? We may even end up with a known causative agent and treatment before anyone discovers the origins of PEM.
You just can't fit a single definition to a spectrum....it's 2015 now, we don't have to pretend all diseases can be classified as single objects...it's a very simple solution to putting the definition game behind us because a binary approach is never going to work before the biomarker is found.
I don't know. I was mildly affected for over four years (full-time education) and now have been severely affected for over 20 years. At both stages, it was the abnormal response to exertion that stood out to me most. However, the exertion had to be a lot more when I was mildly affected. If you don't have an abnormal response to exertion, I'm not sure you have this condition.
People with chronic infections can be picked up by other researchers. Or perhaps the research will move on and develop tools that pick up other people. Anyway, I'm not convinced there is a problem basing it around requiring people to have PEM.