Understanding MS

[Cherie]

"Ok then, what is Multiple Sclerosis?"

[Cherie]

Thought this might be a good place to post basics of MS.


KURTZKE EDSS (EXPANDED DISABILITY STATUS SCALE)
0 Normal neurological exam (all grade 0 in Functional Systems (FS); cerebral grade 1 acceptable).

1 No disability, minimal signs in one FS (i.e., one grade 1 excluding cerebral grade 1).

1.5 No disability, minimal signs in more than one FS (more than one grade 1 excluding cerebral grade 1).

2.0 Minimal disability in one FS (one FS grade 2, others 0 or 1).

2.5 Minimal disability in two FS (two FS grade 2, others 0 or 1).

3.0 Moderate disability in one FS (one FS grade 3, others 0 or 1), or mild disability in three or four FS (three-four FS grade 2, others 0 or 1).

3.5 Fully ambulatory but with moderate disability in one FS (one grade 3 and one or two FS grade 2) or two FS grade 3, others 0 or 1, or five FS grade 2, others 0 or 1.

4.0 Fully ambulatory without aid, self-sufficient, up and about some 12 hours a day despite relatively severe disability consisting of one FS grade 4 (others 0 or 1), or combinations of lesser grades exceeding limits of previous steps. Able to walk without aid or rest some 500 meters. (0.3 miles)

4.5 Fully ambulatory without aid, up and about much of the day, able to work a full day, may otherwise have some limitation of full activity or require minimal assistance; characterized by relatively severe disability, usually consisting of one FS grade 4 (others 0 or 1) or combinations of lesser grades exceeding limits of previous steps. Able to walk without aid or rest for some 300 meters. (975 ft)

5.0 Ambulatory without aid or rest for about 200 meters (650 feet); disability severe enough to impaire full daily activities (e.g., to work full day without special provisions). (Usual FS equivalents are one grade 5 alone, others 0 or 1; or combinations of lesser grades usually exceeding specifications for step 4.0)

5.5 Ambulatory without aid or rest for about 100 meters (325 ft); disability severe enough to impair full daily activities. (Usual FS equivalents are one grade 5 alone, others 0 or 1; or combinations of lesser grades usually exceeding specifications for step 4.0)

6.0 Intermittent or constant unilateral assistance (cane, crutch, brace)required to walk about 100 meters (325 ft) with or without resting. (Usual FS equivalents are combinations with more than two FS grade 3+)

6.5 Constant bilateral assistance (canes, crutches, braces) required to walk about 20 meters (65 ft). (Usual FS equivalents are combinations with more than two FS grade 3+)

7.0 Unable to walk beyond about 5 meters (16 ft) even with aid, essentially restricted to wheelchair; wheels self in standard wheelchair a full day and transfers alone; up and about in wheelchair some 12 hours a day. Usual FS equivalents are combinations with more than one FS grade 4+; very rarely pyramidal grade 5 alone.

7.5 Unable to take more than a few steps; restricted to wheelchair; may need aid in transfers, wheels self but cannot carry on in standard wheelchair a full day; may require motorized wheelchair; usual FS equivalents are combinations with more than one FS grade 4+

8.0 Essentially restricted to bed or chair or perambulated in wheelchair; but may be out of bed much of the day; retains many self-care functions; generally has effective use of arms. Usual FS equivalents are combinations, generally grade 4+ in several systems.

8.5 Essentially restricted to bed for much of the day; has some effective use of arm(s); retains some self-care functions. Usual FS equivalents are combinations, generally grade 4+ in several systems.

9.0 Helpless bed patient; can communicate and eat. Usual FS equivalents are combinations, mostly grade 4.

9.5 Totally helpless bed patient; unable to communicate effectively or eat/swallow. Usual FS equivalents are combinations, almost all grade 4+

10 Death due to MS. (cherie's note: death due to MS means death due to complications like sepsis from an untreated UTI or bed sore or pneumonia)

[lady_express_44]

Functional Systems

Kurtzke, Neurology, 1983, 33:1444-52

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The EDSS is based upon Neurological testing of Functional Systems (CNS areas regulating body functions): Pyramidal (ability to walk), Cerebellar (Coordination), BrainStem (Speech and Swallowing), Sensory (Touch and Pain), Bowel and Bladder; Visual; Mental; and "Other" (includes any other Neurological findings due to Multiple Sclerosis).

Each Functional System (FS) is graded to the nearest possible grade, and V indicates an unknown abnormality; these are not additive scores and are only used for comparison of individual items.

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Pyramidal Function
0 - Normal
1 - Abnormal Signs without Disability
2 - Minimal disability
3 - Mild/Moderate ParaParesis of HemiParesis; Severe MonoParesis
4 - Marked ParaParesis or HemiParesis; Moderate QuadraParesis or MonoParesis
5 - Paraplegia, Hemiplegia, or Marked ParaParesis
6 - Quadriplegia
V - Unknown


Cerebellar Function
0 - Normal
1 - Abnormal Signs without disability
2 - Mild Ataxia
3 - Moderate Truncal or Limb Ataxia
4 - Severe Ataxia
5 - Unable to perform Coordinated Movements
V - Unknown
X - Weakness


BrainStem Function
0 - Normal
1 - Signs only
2 - Moderate Nystagmus or other mild disability
3 - Severe Nystagmus, Marked ExtraOcular Weakness or moderate disability of other Cranial Nerves
4 - Marked Dysarthria or other marked disability
5 - Inability to Speak or Swallow
V - Unknown


Sensory Function
0 - Normal
1 - Vibration or Figure - Writing decrease only, in 1 or 2 limbs
2 - Mild decrease in Touch or Pain or Position Sense, and/or moderate decrease in Vibration in 1 or 2 limb, or Vibration in 3 or 4 limbs
3 - Moderate decrease in Touch or Pain or Proprioception, and/or essentially lost Vibration in 1 or 2 limbs; or mild decrease in Touch or Pain and/or moderate decrease in all Proprioceptive tests in 3 or 4 limbs
4 - Marked decrease in Touch or Pain or loss of Proprioception, alone or combined in 1 or 2 limbs; or moderate decrease in Touch or Pain and/or severe Proprioceptive decrease in more than two limbs
5 - Loss of Sensation in 1 or 2 limbs; or moderate decrease in Touch or Pain and/or loss of Proprioception for most of the body below the head
6 - Sensation essentially lost below the head
V - Unknown


Bowel and Bladder Function
0 - Normal
1 - Mild Urinary Hesitancy, Urgency, or Retention
2 - Moderate Hesitancy, Urgency, or Retention of Bowel or Bladder, or rare Urinary InContinence
3 - Frequent Urinary InContinence
4 - Almost constant Cathaterization.
5 - Loss of Bladder function
6 - Loss of Bowel function
V - Unknown


Visual Function
0 - Normal
1 - Scotoma with Visual Acuity > 20/30 (corrected)
2 - Worse Eye with Scotoma with maximal Acuity 20/30 to 20/59
3 - Worse Eye with large Scotoma or decrease in fields, Acuity 20/60 to 20/99
4 - Marked decrease in fields, Acuity 20/100 to 20/200; grade 3 plus maximal Acuity of better Eye < 20/60
5 - Worse Eye Acuity < 20/200; grade 4 plus better Eye Acuity < 20/60
V - Unknown


Cerebral Function
0 - Normal
1 - Mood alteration
2 - Mild decrease in Mentation
3 - Moderate decrease in Mentation
4 - Marked decrease in Mentation
5 - Dementia
V - Unknown


Other Function
0 - Normal
1 - Other Neurological finding

http://www.thjuland.net/edss-fs.html#Pyramidal

[wannabe]

Nice posts Cherie(s). Good basis to have on the forum.

Did you write them yourself? I didn't see any attribution or link to a source if someone else authored them like ladyexpress gave. I hope you're not taking credit for someone else's work.

[Cherie]

Not taking credit for anyone's work. These were copied from the old forum and in my files. If I wrote It, I'd say I wrote it. The resources and links that I posted here was something I have compiled over the years so I will take credit for putting those together. Kurtzze has been around for years and set the standard for MS disability scale in the early 80's. Anyone who thought I'd written that has not been in the MS community long.

I would encourage anyone who has reliable information to post it here so that it benefits all.
Cherie

[DBG's]

Great info ladies. Nice to have for newbies who need a quick resource.

Christine

[wannabe]

Not taking credit for anyone's work. These were copied from the old forum and in my files. If I wrote It, I'd say I wrote it. The resources and links that I posted here was something I have compiled over the years so I will take credit for putting those together. Kurtzze has been around for years and set the standard for MS disability scale in the early 80's. Anyone who thought I'd written that has not been in the MS community long.



Actually, you seem to be writing this for those unfamiliar with MS, so yes, people MIGHT have thought you'd written it since you are not sharing this info for those who have "been in the MS community long". But since we can't always get into the minds or backgrounds of our audience, general rules and guidelines have been developed so that there is no misunderstanding.

My concern is not that you take credit for your work Cherie. My concern is that you MUST provide credit if you did NOT write something yourself. Or not post it at all.

If you did not write something yourself (or acknowledge any material IN your written work to the appropriate sources), then you MUST NOT post it.

You said: "These were copied from the old forum and in my files". Unfortunately, that does not give specific credit to the specific authors and is insufficient. Copyright and plagiarism and all that silly stuff that lets people get the credit they deserve for writing somethin... ;)

It's just important in health reporting (especially on forums where who said what might get mixed up) that you understand sourcing and attribution. And don't post if you are unable to provide the original source for the material. Lots of stuff regardless of attribution or sourcing STILL may not be posted by others without express permission of the author. It's important to know the rules.

Thanks. :)

[Cherie]

You will find "Understanding MS" excerpted from the NMSS website last year.

[wannabe]

Here is an article I found (altho anyone can find many others on the web, this is just offered as an example) about copying and copyright and important information for anyone who copies other people's work. My posts above were meant to be helpful information to all, although I have received criticism in private for trying to be helpful.

The penalties are extremely hefty if you copy someone's work beyond "fair use" and if you excerpt their work without giving them credit. I hope my caution and this general information will protect people.

So here is a general (although probably not definitive) information source for more information if anyone wants to make sure they don't get into trouble by posting someone else's information.

http://www.umuc.edu/library/copy.shtml

[doydie]

Cherie, due to the fact that most of my nursing instructors were pretty old. I really expected you to be much older. You are a lovely young lady! I hope your husband appreciates you!!!!!

[Cherie]

Thanks Doydie. He does. He's younger than I but almost looks like he could be my dad. Oh...I graduated from college the first time in 73 so have been a nurse for 33 years. And a social worker for 7. And an MS Certified nurse for 3. And a published author for .....well, the first piece was 1968 and the most recent this year. So I know all about copywrite laws and courtesies.

[wannabe]

And I will post links when I have them but much of what I post comes from journals so is not that succinctly published and "Understanding MS" was edited in length considerably by me and contains very few original intact sentences. Nothing for which I took credit for.

Cherie, it appears you copied this material, exactly (including spelling errors), from the mult-sclerosis website. That is Paul Jones' website. Your copy DOES contain "original intact sentences" since it is copied EXACTLY, save for your inability to copy the graphs and diagrams he has.

See: http://www.mult-sclerosis.org/whatisms.html

Cherie I understand you are a professional as you made clear in your PM to me outlining your extensive background. This website (BT2) could get into big trouble and you could be fined heavily for copying & pasting someone else's material and then claiming you somehow changed it so that "few original intact sentences" remain when this is simply not true. You copied the text as it was, Paul Jones' work, then gave an inaccurate source when asked to give credit to the original author who worked hard to compile and write this information. You then claimed you somehow altered the original to a point where it was your own. It looks to me that you copied it exactly from his work and you didn't change it but tried to take the credit for his work.

I think Paul Jones deserves the credit for writing what he did and it is very important to give a link to your source and acknowledge his authorship. I don't even think you're allowed to copy such a large segment of someone else's work, but that's for you to determine.

This is just a really good example of why it is important to know your source, to provide it (even if it is just a journal publication citation), and to make sure you don't take credit for someone else's hard work. Paul Jones has given so much of himself to the MS community, he deserves recognition for his work and not someone passing it off as their own.

[Cherie]

You have just given credit to one who I did not realize should get credit. Thank you.

[Chris]

Cherie, it appears you copied this material, exactly (including spelling errors), from the mult-sclerosis website. That is Paul Jones' website. Your copy DOES contain "original intact sentences" since it is copied EXACTLY, save for your inability to copy the graphs and diagrams he has.

See: http://www.mult-sclerosis.org/whatisms.html

Cherie I understand you are a professional as you made clear in your PM to me outlining your extensive background. This website (BT2) could get into big trouble and you could be fined heavily for copying & pasting someone else's material and then claiming you somehow changed it so that "few original intact sentences" remain when this is simply not true. You copied the text as it was, Paul Jones' work, then gave an inaccurate source when asked to give credit to the original author who worked hard to compile and write this information. You then claimed you somehow altered the original to a point where it was your own. It looks to me that you copied it exactly from his work and you didn't change it but tried to take the credit for his work.

I think Paul Jones deserves the credit for writing what he did and it is very important to give a link to your source and acknowledge his authorship. I don't even think you're allowed to copy such a large segment of someone else's work, but that's for you to determine.

This is just a really good example of why it is important to know your source, to provide it (even if it is just a journal publication citation), and to make sure you don't take credit for someone else's hard work. Paul Jones has given so much of himself to the MS community, he deserves recognition for his work and not someone passing it off as their own.
wannabe, I agree with you. I just read the website you posted and the information the 1st Cherie provided on here, and it is exactly verbatum. I am a CNM originally from the UK, and trained here in the states. During my training here in the states we were told never to cite anyone's references without giving the source.

Is this commonplace? It seems to me that it would be illegal. I would suggest to anyone who is citing anyone's sources to please acknowledge the author. I think there are copyright infringement laws, aren't there?

The other question I have for the nurse Cherie is if you've only been a Nurse for 33 years, how were you able to professionally publish 38 years ago? Something isn't right here. Thanks for clarifying any possible mistakes.

Chris

[Cherie]

I never said I was asked to publish PROFESSIONALLY 8 years ago. My publishing was done in "Young America Sings" an anthology of poetry and essays.

And, because "Understanding MS" was something I got via email and later saw in Brain Talk...not cited in either place, I did some digging and discovered that it was taken from the NMSS site (which gives permission for copying materials for educational purposes.).

[agate]

I haven't yet found it on the NMSS Website but am still looking. I see that Paul Jones didn't give any source either when he quoted the material. In fact, it may be by Paul Jones, for all anyone knows.

When I saw the material here in clinical1's post, I assumed she wrote it. I think most people would assume that unless a source is given.

I don't think anyone knows "all about copyright," especially now that the Internet has created new situations in terms of copyright law.

However, there is another very good reason for always including a source for a quotation, and that is that your readers may want to look at the source, to see what else it might say, to see the context where the quotation occurs.

Sometimes it's a simple matter of noticing a misprint or something that seems to have been omitted in the quotation and wanting to check the original source....

Copying and pasting doesn't guarantee that your quoted material is going to be reproduced in its original form.

I hope I'm not just adding fuel to a fire here, but I for one do feel strongly about the need to cite sources and to make sure that somebody else's words are clearly separated from your own words.

[lady_express_44]

Since it's your thread, Cherie, I would suggest it might be worthwhile for you to delete it and start again.

Just link the source (where you know it exists), and I will add on my information again.

This way we can have a clean start for providing some very valuable information, and put this behind us.

Cherie

[Bobbi]

It seems the idea that Lady Express is a good one, Cherie. Who knows? Possibly the original text is public domain, yet to move things in a way that's enabling further understanding, a linky-do could take this heat off.

Whomever wrote the article, I wish I'd seen it when I was being tested for MS. It makes me think that the process would have been less frightening. Though my docs have not ruled out MS, I really knew so little about it when I was sent for testing. Such info. that you posted, Cherie, is very helpful :).

All has not been lost here :D.

[Chris]

I never said I was asked to publish PROFESSIONALLY 8 years ago. My publishing was done in "Young America Sings" an anthology of poetry and essays.

And, because "Understanding MS" was something I got via email and later saw in Brain Talk...not cited in either place, I did some digging and discovered that it was taken from the NMSS site (which gives permission for copying materials for educational purposes.).

Come on guys...you're trying to turn this into a dictatorship! Which of you is Mod#4? Get off it and let people learn.

I haven't yet found it on the NMSS Website but am still looking. I see that Paul Jones didn't give any source either when he quoted the material. In fact, it may be by Paul Jones, for all anyone knows.

When I saw the material here in clinical1's post, I assumed she wrote it. I think most people would assume that unless a source is given.

I don't think anyone knows "all about copyright," especially now that the Internet has created new situations in terms of copyright law.

However, there is another very good reason for always including a source for a quotation, and that is that your readers may want to look at the source, to see what else it might say, to see the context where the quotation occurs.

Sometimes it's a simple matter of noticing a misprint or something that seems to have been omitted in the quotation and wanting to check the original source....

Copying and pasting doesn't guarantee that your quoted material is going to be reproduced in its original form.

I hope I'm not just adding fuel to a fire here, but I for one do feel strongly about the need to cite sources and to make sure that somebody else's words are clearly separated from your own words.

I am not turning this into a dictatorship. I see that agate also believes that one should always cite sources when giving out factual information that clearly was written by someone other than yourself. I think it's super that you are supplying informational materials to people who may not know where to turn for proper informational sources, however, let us give credit where credit is due.

In your doing so, it implies that the material you wrote was written by you, if I am not mistaken. So, please don't acccuse me of being a moderator or preventing people from learning about their conditions. It appears that agate fully understands my stance on this matter as well. When one writes a paper, aren't we required to use footnotes and a bibliography? Why should it be any different on here. Please give credit where credit is due.

Carry on.

Chris

[Cherie]

I would be happy to do this but cannot see a way to do so. Delete is not an option in our edit menu or User CP menu. I am sorry that my attempt to help, educate and enlighten has produced such controversy.

I PM'd wannabe to try and deal with the comments behind the scenes but apparently a Private Message does not mean "Private" here since much of what I said got placed here on the forum. I am not here as an "expert" on MS but as a person living with the illness for nearly 30 years. During that time, I've collected a lot of information. Initially some of that came from brochures and pamphlets. That information, by the guidelines stated in this thread, could not be posted here as there is not an individual author name to credit.

I think the greater evil here is not giving accurate information without giving detailed specifics of who compiled the information. The greater evil is the breaking of a confidence in private messaging and taking private information a person was given in confidence and dumping it on a public forum for all to see. Then having others jump in without knowing the facts or background behind the information that had been privately obtained and turn the whole thing into something that was never meant to be. I feel I have been treated wrongly. I will never trust wannabe again with anything personal.

Now... if anyone knows how to delete this thread so we can start over, I'm listening.

[agate]

There hasn't been a way to delete an entire thread on BrainTalk without asking a moderator. In this situation at BrainTalk2, that would mean contacting the board administrator.

I have just contacted Paul Jones to ask permission to quote the page of his Website. I have assured him that he would be given credit for the material and if he wants, there would be a link to his Website as well.

There was an e-mail address for him on his Website. If I get no reply after a day or two, may I suggest that somebody post the material in a new thread, using the QUOTE tags at the top of the message window and give the URL and name of his Website.

Permission might be forthcoming at a later date, and if it is, whoever posts the thread can update it with a note that it is being quoted with permission.

I'll be happy to do this on Cherie's behalf, and I'll give Cherie full credit for the idea, which is due her as she is the one who saved the material and had the idea of posting it here.

Many people with MS are starting up their own Webpages and/or message boards. I do feel strongly that our words, which some of us find difficult to think up and type, should be recognized as ours.

[lady_express_44]

Good idea Agate.

Or alternatively, Cherie could just attach the link, since links seem to be permitted here. Paul has an awesome site, with a lot of good information, so I think it is worthwhile to do that anyway.

I am not here as an "expert" on MS but as a person living with the illness for nearly 30 years. During that time, I've collected a lot of information. Initially some of that came from brochures and pamphlets. That information, by the guidelines stated in this thread, could not be posted here as there is not an individual author name to credit.


Cherie, I understand where you are coming from with this. I too have been collecting research information for 15+ yrs. Most of what I have (except the links to BT1), are in notes that I wrote for myself. I have no idea where the information came from, or how much is "mine", but it seems a waste to not share it with others.

If you try a few of your sentences, from whatever you want to post, you can see if it will come up when you google. If it is verbatim, you will usually get a hit. The problem with my info is that it is often NOT verbatim, so although much of it is copied from somewhere, it's been somewhat re-worded to suit my particular purposes. (It's very likely that the info Paul posted is a combination of info he picked up from "somewhere"). That makes it hard to acknowledge an author sometimes.

The other issue is when we just remember a fact. I have no idea where I heard some of the points that I recall, but I'm not sure that it is against any copywrite law to "quote" a single fact anyway. Still, it lends credibility when we can do so.

I really like the idea of having this kind of thread though, and I hope we can find a way to start fresh.

Cherie

[wannabe]

Nobody now seems to know who wrote it .

We are not copying & pasting someone else's material. It is not incumbent on us to source it. YOU are the one who lied and said you edited it to a form where the original was no longer intact. You outright claimed credit when it should have gone to Paul Jones. You also provided what seems to be an erroneous source when asked for one.

anything that helped enlighten on MS as a result of what was posted here has been hijacked by nit picking.

It is NOT nitpicking to ask for you to give the author credit and not take the credit yourself. That's like saying it's nitpicking if someone swears to tell the truth in court... and lies. Why are you making such a big deal out of the request to give the source of the material?

I think the greater evil here is not giving accurate information without giving detailed specifics of who compiled the information. The greater evil is the breaking of a confidence in private messaging and taking private information a person was given in confidence and dumping it on a public forum for all to see. Then having others jump in without knowing the facts or background behind the information that had been privately obtained and turn the whole thing into something that was never meant to be. I feel I have been treated wrongly. I will never trust wannabe again with anything personal.

How did I break a confidence? I publically posted that you gave me your background via PM. That's all. Where did I "dump" anything else that you wrote? YOU gave your credentials publically. It wasn't private information obviously.

Cherie now you are making things up. I made no other mention that you PM'd me and railed against me in private. I made a general comment that I received a critical PM but I didn't say it was from you nor did I divulge the content.

My only public comment about receiving a PM from YOU was to say that you gave me your background, information that YOU publically disclosed and that I didn't share in detail anyway.

Then having others jump in without knowing the facts or background behind the information that had been privately obtained and turn the whole thing into something that was never meant to be. I feel I have been treated wrongly. I will never trust wannabe again with anything personal.

Anyone on the forum (including myself) has the same "facts or background behind the information that had been privately obtained". I don't have any more than anyone else. I based my public comments on what you wrote publically.

You didn't give me any personal information and I didn't share any. And you can't have a "confidence" with someone if only one person knows about it. I have no idea what kind of confidence you shared and I can't see where I broke any (nor did I agree to keep any to begin with).

This was an issue about sourcing and giving references. It then became an issue about you taking credit for something that you obviously did not write and did not alter so that no "intact sentences remained". Now you are making it a personal attack against me by saying that I somehow "broke a confidence", am "nitpicking", am "treating you wrongly", and am trying to turn this into a "dictatorship". That is ridiculous. Please don't personally insult me Cherie. Asking you to source your material and not say you wrote something that you didn't does not warrant a personal attack by you.

Cherie I would hope you appreciate the gravity of saying you wrote something that you didn't. This IS a very serious issue. Please stop trying to make this personal. This is about giving credit for written material that someone ELSE took the time to research and write. How can anyone "trust" YOU when you obviously take other people's hard work and pretend that you wrote it, refusing to give them the credit. Let's not talk about trust okay?

[wannabe]

Cherie, I understand where you are coming from with this. I too have been collecting research information for 15+ yrs. Most of what I have (except the links to BT1), are in notes that I wrote for myself. I have no idea where the information came from, or how much is "mine", but it seems a waste to not share it with others.

If you try a few of your sentences, from whatever you want to post, you can see if it will come up when you google. If it is verbatim, you will usually get a hit. The problem with my info is that it is often NOT verbatim, so although much of it is copied from somewhere, it's been somewhat re-worded to suit my particular purposes. (It's very likely that the info Paul posted is a combination of info he picked up from "somewhere"). That makes it hard to acknowledge an author sometimes.

The other issue is when we just remember a fact. I have no idea where I heard some of the points that I recall, but I'm not sure that it is against any copywrite law to "quote" a single fact anyway. Still, it lends credibility when we can do so.

I really like the idea of having this kind of thread though, and I hope we can find a way to start fresh.

Cherie

lady express (just to distinguish you from nurse Cherie):

I don't know all copyright rules either and they seem like they're changing all the time with the advent of the internet.

Just a link to Paul's website would have been sufficient anyway to share all his good information here. This didn't even have to become an issue unless someone is TRYING to take credit for work they didn't write.

I think that's the thing. We all have information we've collected. And if it's for personal use we can keep it in any form we like. But the internet is a big ol audience and that audience deserves to know who wrote the material. Even the exception of copying "for educational purposes", that only allows you to COPY it to a certain extent, it does not except anyone from the requirement to give the source. And I don't think the internet is included in the "educational" exception anyway since publications that people pay to receive want to ensure that the information isn't available publically for free by someone that has put it on the internet. Otherwise no one could publish material and charge for it if someone else has shared it publically "for educational purposes" for free. They still need to prevent that so that can earn a living. And the author definitely should get credit for writing it to begin with.

I understand that it sometimes seems unfair not to be able to share information if we can't provide the source. But if you look at the bigger picture, it also seems unfair to be able to share it and claim authorship when someone else put in the work. To me that is the bigger harm. After all, with the internet and good search engines, it's usually quite easy to find a source of material even if we don't have it in our personal materials.

I just think the authors and publishers deserve the recognition and that is the overriding concern here.

[Cherie]

Wannabe...
PRIVATE Messaging is PRIVATE. You erred in a way greater than I by publishing publically , information I'd given you in private. I posted public domain information on this forum and talked to you PRIVATELY. You broke confidence. Thank you Joan and Cherie for helping to resolve this. Like both of you, I have a great deal to share that would benefit the community.

[wannabe]

Wannabe...
PRIVATE Messaging is PRIVATE. You erred in a way greater than I by publishing publically , information I'd given you in private. I posted public domain information on this forum and talked to you PRIVATELY. You broke confidence. You were wrong. I never lied. You are.

Thank you Joan and Cherie for helping to resolve this. Like both of you, I have a great deal to share that would benefit the community but with wannabe aboard, it doesn't look like that can happen without it being pulled apart.

***sigh...

I didn't publish publically. I said you gave me your background. I didn't say WHAT your background was. You did. But even so, I never agreed to receive your message in private. Just because you chose to send it means that I have obligations because of it? Give me a break.

Where does it say that a. private messaging is an opportunity for people to privately attack others in a way that they don't want the public to know about and b. that private messaging is a system where we can't even ACKNOWLEDGE receiving a private message (which is essentially what I did. I didn't copy your PM publically nor did I disclose the specifics of it). I have read many many times people say: "you have a PM" or "I wrote you a PM" or "I sent you the information in a PM". I'm sure I could find instances where you have said just such statements or similar.

How is that different than what I have done here? Wait, don't answer. I just don't want to defend myself anymore against these silly allegations. You have said alot more about the private messages than I have here.

This is going off on a tangent anyway. The issue is sourcing. I don't need to be attacked publically OR privately by you because of asking you to give your source. I hope you will appreciate one day that this issue of sourcing was brought to your attention by me (and others) and you were given an opportunity to correct your misstatements and lack of proper sourcing instead of it ending with being publically chastised by the true author of the work, or fined heavily or sued.

[Cherie]

Comment deleted

[wannabe]

Baugh!!! Wannabe...you'll never make it to arrived with this attitude.

Cherie. Please. Let's give this a rest. It's not good for my health to be personally insulted and this is an MS forum where the information should be about MS. A discussion about giving sources IS an appropriate topic if people are going to copy material. Let's not make this a mudslinging fest or about anything else but sourcing okay?

[agate]

I'm assuming that Cherie/clinical1 would like her thread to be salvaged or duplicated with the quoted material back in place for people to see, as soon as possible.

I noticed that Paul Jones mentions on his Website that he takes a long time to reply to reply to his e-mail sometimes. I think we who have MS can understand this.

Since it may be a while before a reply giving permission to quote comes along, I think Cherie/lady_express's idea is a good one: Put up a new thread, paste in the quoted material, indicating that it's a quotation, and give the URL you got it from.

I don't know copyright law very well either, but I use a common-sense approach sometimes. If I'd written that material and seen it posted as it was, with no attribution or indication that Cherie didn't write it, I'd have been mad.

After all, I was the one who chose the words and put them together. For many people that is no easy task. I've heard people say they sweat blood over every paragraph, every sentence. This can be literally true. I've seen graduate students get stuck for weeks on carving out a single sentence.

I have a small message board, and recently a member of it quoted a post from another message board--a post by someone not registered on our message board. She learned about it and asked me to have it deleted. She said she had posted it on that other message board, not on mine, and she didn't want it being transported to other locations, where it could be taken out of context.

I agreed with her completely, and as she happens to be a lawyer, I had a notion she knew what she was talking about. I asked the poster to delete the quotation, and she did. She could have given permission to use the quotation, but she didn't.

I've said before in this thread that there is another very good reason for giving a source. A reader often wants to look up the source, SEE the quoted material in its original context, and maybe look around further on that source.

Sometimes quotations are given without supplying the figures or the references, for instance. I've often gone to the original source to look at these. There are figures in the Paul Jones Webpage. People might want to look at them. They're not easily copied and pasted, and so they didn't make it into Cherie/clinical1's copy.

[lady_express_44]

Just a link to Paul's website would have been sufficient anyway to share all his good information here.

I agree. That is a good solution, in this instance.

This didn't even have to become an issue unless someone is TRYING to take credit for work they didn't write.

I don't think it was a matter of Cherie "TRYING to take credit" . . . but more of a situation where Cherie just didn't percieve the same value (as you), in tracking "whom" to credit with writing/providing this information.

Continuing to accuse Cherie of purposely trying to mislead people is probably just adding fueling the fire though (even if it is true). The goal is to get resolution, in my mind, not assign blame.

I doubt very much that Paul didn't do the same thing; copy from other sites, to some extent. We all do that . . . as absolutely everything "factual" about this disease is taken from "somewhere". Otherwise, it is just our opinion . . . and even opinions are formed from information we have gleaned from reading something.

Creative opinions are often theoretically afforded copyright protection too, so I don't really see how we can be held accountible for defining where we heard everything we write. That would mean something as simple as recommending a certain off-label drug, or providing a list of side-effects about that drug, would "officially" be stealing proprietory information. That's a lot of drama, jsut to share information for the benefit of others.

I understand that it sometimes seems unfair not to be able to share information if we can't provide the source.

I feel this is a WASTE, not "unfair".

My notes include details derived from many different sources of information - and is written it into into a more "comprehensive" resource. This includes much of my own wording (and opinion), but in effect, I guess that information should not be posted on a board (if we are to follow copyright to the letter) . . . ?

With the advent of the internet, prosecution for not following copywrite law is almost unheard of (even considered petty by many courts).

I just think the authors and publishers deserve the recognition and that is the overriding concern here.

I agree, in principle, particularly if the entire source of information is copied verbatim. That requires some discipline/effort (if drawing from old notes), but where practical, it is most definitely the "fair" thing to do. Hence, I have made it a habit of attaching a link, where possible.

Cherie

[wannabe]

I don't think it was a matter of Cherie "TRYING to take credit" . . . but more of a situation where Cherie just didn't percieve the same value (as you), in tracking "whom" to credit with writing/providing this information.

Continuing to accuse Cherie of purposely trying to mislead people is probably just adding fueling the fire though (even if it is true). The goal is to get resolution, in my mind, not assign blame.

...and "Understanding MS" was edited in length considerably by me and contains very few original intact sentences. Nothing for which I took credit for.

lady express -

This is the phrase that I have objected to. Someone knows if they wrote something or not. This statement is in fact absolutely not true and I think misleading people into believing you wrote it when you didn't is a VERY big issue.

I agree before this statement that this was probably an innocent error of not offering a source. And I treated it as such. But this line leads me to believe that there was intention. I know what I write and what I haven't. It sticks in your mind if you spent time and energy writing something. The language itself will give me clues if I've truly forgotten. For example, I would know that I didn't write this Paul Jones article because I never say the word: "crikey". :)

I would have thought that if someone was innocently making mistakes and this was brought to their attention, they would be contrite and really be eager to correct the misperceptions and errors in not giving credit. And would appreciate that someone had pointed this out to them before they got into big trouble or was fined or sued. I haven't seen that and that is unfortunate.

I respect that you see this differently though. Hopefully we can all learn together to make sure that people DO get credit for their work.

[christine bauman]

Hi everyone, we are in this fight against MS TOGETHER to support each other; together we stand divided we fall. Let us support each other!!!! MS is enough of a battle to deal with. Love you ALL!!!!!!

[Bobbi]

Hi everyone, we are in this fight against MS TOGETHER to support each other; together we stand divided we fall. Let us support each other!!!! MS is enough of a battle to deal with. Love you ALL!!!!!!

Yes, and, also people whom are new to trying to understanding their testing procedures and the terms and how to cope if dx is made are also reading and wanting to know more.

Can't this thread just be let go? It started on a high note and now... if I found myself faced at the point I was a couple of years ago: I'd be leaving here as fast as possible. No one wants to be ensnared in a firestorm while trying to find info. and support.

Who wrote what? I dunno. But the info that was initially shared was helpful in understanding. I'm sorry that it's gone, when no one has still offered info. about whom actually authored it. Maybe, as I mentioned, it is Public Domain, which actually means that attribution is not mandated.

If I were "new" to being sent for testing, I wouldn't have a part of what's going on here and likely find myself feeling alone.

Can everyone please move on?

[Howard]

Whooooooooooooo lives in a pineapple under the sea.....
oh, HI Bobbi. Pay no atttention to me. I never discuss MS.....SpongeBob SquarePants!!!

[Bobbi]

Kinda hard not to pay attention to you, or anyone whom makes time and takes the effort to post :). For me, posting is an all out effort. So I just imagine it may be for others too.

[agate]

Bobbi, that was my point exactly when I wrote (in this thread, above):

Many people with MS are starting up their own Webpages and/or message boards. I do feel strongly that our words, which some of us find difficult to think up and type, should be recognized as ours.

I haven't had a reply from the Paul Jones Website yet but I did have one from the NMSS Website developer, who says that when quoting material on the NMSS Website, it is sufficient to give credit to the NMSS Website and give the page URL.

[Cherie]

Which is in the body of what still exists on this site. Now will folks stop debating and get on with the business of learning to stay healthy with MS and helping each other manage with viable information?

Here is a new source of information i just became aware of. The link is in the post.

New International “Atlas of MS” Launched
The Multiple Sclerosis International Federation (MSIF) has launched the Atlas of MS ( www.atlasofms.org), a searchable database of information on the epidemiology of multiple sclerosis – who gets MS – as well as treatment access and resources available to people with MS within a particular country, region, or worldwide.

[Cherie]

http://www.atlasofms.org/welcome.aspx I hear the link posted has an error message. I just got in with this link.

[Tree55]

If I was a new member, I would stay away from this forum because of this thread. An informative thread was reduced to a personal attack. Cherie was trying to post important info. This was blown way out of proportion.

[agate]

Tree55, welcome!

How about a few words of introduction from you?

I don't see how this thread degenerated into a personal attack. Cherie posted most of an entire Webpage that turned out to be (probably) by Paul Jones, who has an MS Website. She was probably in a hurry and neglected to dig up the relevant information on the source.

Other people came along and felt that giving the source is important for a number of reasons.

It was suggested that Cherie re-post the information and cite the Webpage (the Paul Jones Website) URL as the probable source.

I'm still waiting for an e-mail reply from Paul Jones about whether it's OK with him to use his material on another board like this, provided he's given the credit.

Since he is slow to reply (and it says he is on the Webpage), the best thing to do is probably to re-quote the material with the link to his URL. The material could always be deleted later if he doesn't consent to this use.

That's just my opinion, though. I don't think anyone meant to attack Cherie (clinical1) personally.

[Cherie]

Joan (agate),
I have to disagree. It was clearly a personal attack by two posters. And I could not delete the thread and start a fresh one so I let the information stand as it was added and expressed gratitude that people had located the source and given credit to it.

[agate]

Cherie, I retract my statement. Looking back over the thread more carefully, I see what you mean. There were attacks.

I've found a couple of ways to delete a thread, I think. One or the other of them will probably work:

1 - In the first post in the thread, click on "Edit." There is a button for "Delete." If you click "Delete," your first post will be deleted AND the entire thread might also be deleted.

2 - At the bottom of the screen, click on "Contact Us" and let the Administrator(s) know you'd like to delete the thread.

[Cherie]

Joan,
Thanks. But that only works if no replies have been added and by the time I tried to correct the situation, it was not doable. Also, since this forum does not yet have Moderators, you are not able to contact one to eliminate a thread.

I've done what I could to remove any inflammatory or controversial things I may have posted. Problem is, people don't read an entire thread and add to the last comment or two and it keeps the ball rolling

[ewizabeth]

Hi Cherie,

Thanks for posting all of this helpful info. I wonder if this is going to be the new BT home? Looks like a nice clean slate here. :)

[Gary]

Hmmmm, Cherie would you send me a Pm please I see that you dont accept PM's

[Cherie]

Sure. And I'll fix the PM feature. Didn't know that because I have been getting PM's.

[Cherie]

For Breaking MS News Stories of 2006, please click on this link:
http://www.nationalmssociety.org/Breaking%20News.asp

Testosterone gell being studied to help men with MS:
http://www.krcg.com/news/news_story.aspx?id=16732

[BBS1951]

Seemed like a personal attack to me. Perhaps it was not meant as a personal attack, but it sure came across as one, to me.

[xo++]

Oddly enough, I bumped into this thread doing a Google search.

Cherie, I believe you did properly attribute the scale ... to Kurtzke. Although I don't have the paper, I believe this scale (and its description) was drawn from Kurtzke's 1983 paper that Lady Express cited.

In any event, this scale is quoted in a multitude of published papers as "the Kurtzke scale" sometimes without any other attribution. Kurtzke is given credit.

Mark

[bluesky63]

Actually, the scale is so commonly known and used in the medical community that it's now part of the public domain and doesn't need to be attributed at all. Certainly Paul Jones didn't write it.

Here's a link to a very quick history of the EDSS:

http://www.betaferon.com/start.jsp?/resources/understandingms/diagnostingms/scale.jsp

Please note that I did *not* design the site, write the materials, or have any part in the photography, layout, or choice of models.

[september1968]

Yow! Hi guys.. I really have missed this place. :)

Tina

[Cherie]

Welcome to the 4 of you. You have been missed. And I appreciate your input on the discussion of citation. I thought I had given sufficient for folks to search and find additional information on the subject.

There was sone discussion in the first week these boards were up and running of making this a research site with well cited literary and scientific papers that people could draw on from a reputable source. That opinion was stated by only one poster that i saw but seemed to have made its way here.

I am so used to posting new articles or links as they come up yet this thread has stopped that for theis community (at least to the degree it once took place).

Mark,
I cede that task to you. I'm so glad so many people are finding this place.

[agate]

Hi bluesky and xo (nice to see your names again!):) --

I don't believe there was a problem about the Kurtzke citation. The problem was the first post in the thread, which has since been deleted.

It was a fairly long page of text that turned out to be a verbatim copy (minus the diagrams) of a page from the Paul Jones Website. Paul Jones probably did write it.

Some people here were disturbed that it had been posted here with no indication whatsoever of the source. It looked as if Cherie (clinical1) had written it.

It seems like a good idea to me to keep attention to sources (and their dates) uppermost in our minds when posting on an MS message board.

I often go back to a cited source to see what else I can find out or to clear up questions I have.

Citing a source is not only the fair thing to do--it's very helpful to those who are reading the posts.

[CPchick]

Hey,

I found out recently that my mum has MS, as I am and have Cerebral Palsy, it was a bit of a shock.

I know she needs help, but I can't really help her with physical things such as vacuuming or cooking. Any ideas of what I can help her with?

Thanks.

[Jmak]

Oh Cherie,

Jeez Louise! I thought nothing of your post except that it reminded me about the Kurtze scale which we all know about in detail anyway and made me take a few minutes to see where I was now on it.

I'm sure you were trying to be helpful and give info to people new to MS because sometimes us oldtimers don't have the energy to write things out over and over again.

By the way I received my BA in English Literature so it's not like citing sources is foreign or considered unimportant to me. Sorry you were jumped on. Do we have nothing else to be upset about?
Jean

[agate]

Hi CPchick,

I'm sorry that your post seems to have been overlooked here.

You're in a tough spot. You want to help your mother who has MS but you're not sure what you can do, since you have the CP limiting your activity.

It's a hard question to answer without knowing just how your mother's MS is affecting her because everyone's MS is different. She might have problems with seeing and reading, or she might not, for instance.

If she does have trouble reading, you could be very useful if you could read to her. Some people with MS have trouble holding onto a book or other piece of reading material. Others have trouble seeing the print. And some have both problems.

Without knowing any more about her MS, I can say that you could help her by trying to keep the atmosphere as relaxed and easy-going as possible, with lots of flexibility allowed. Maybe let her be the guide and ask her to tell you what you can do.

You'd probably get more replies if you'd start your own thread on this topic. I'm sorry I can't be more helpful.

[Moonwolf]

Well, Cherie, here was a perfect example that "no good deed goes unpunished."

We know you're honest as the day is long, and why did a certain poster have to make a stink without PM'ing you first? It all could have been cleared up without acrimony on the forum.

The TOS on braintalk specifically said that materian from PM's should NOT be divulged on the forum--so that poster should delete the info and apologise to you.

[Cherie]

Hey,

I found out recently that my mum has MS, as I am and have Cerebral Palsy, it was a bit of a shock.

I know she needs help, but I can't really help her with physical things such as vacuuming or cooking. Any ideas of what I can help her with?

Thanks.

I think the very fact that you're there and you care is a big help. perhaps you can share things like this that you find on the net with her that she might find helpful. Welcome.

[MS Mommy]

Hi Cherie,

I always read your posts on BT1 with great interest. You are such a valuable asset to our community.

Thank you for continuing to contribute so much.

MSM

[JDPhD]

Hi Folks! I just wanted to make note to the previous posting in the thread, all with good intentions and which I hope will result in a good outcome. :)

For information, The Guidelines specifically list a few of the items that were questionable earlier in the thread.

Inappropriate Content

This is, first and foremost, a self-help support and education community. That means if your message (post or PM) isn't about offering support or information to another person or asking for it, it's potentially not appropriate for our community. Specifically prohibited from our community:

* Advertisements of any sort
* Soliciting others to join another online mental health community
* Flames or messages meant to intimidate or harass others
* Threatening or profane messages
* Messages discussing a private message (PM) from others
* All administrative issues (exceptions will be made from time-to-time for community administrative issues)
* Copyrighted materials that you do not own the rights to, except any educational or research article a member would like to post that is not available elsewhere online to nonsubscribers
* Messages containing suicidal threats or suicidal actions
* Messages containing or condoning illegal acts
* Limit your direct discussion of politics, as people usually hold pretty strong opinions about this topic
* Posts of a mostly religious nature should be made to the Spiritual Support forum
* Triggering material without the use of the Trigger Icon (to be added)
* Anything that violates the Terms of Use for this site (TBD)

The good news is that the thread can be edited by Admin and a simple request (which I will go ahead and do) will remove the misunderstandings, as per their decision.

It's important to not give the full articles when using copyrighted material. (Most sources allow you to quote briefly, with credit and a link.)

It's also important to not in any way refer to something that was ONLY in a Private Message, unless you have the person's ok to share. (That happens sometimes when someone sends you a funny or such and you wish to share it with the board, for example.)

NOW on to MY question. I don't have MS, but I do have Myelopathy (one lesion.) I have many of the symptoms and problems that you with MS have, but do not have the brain lesion interference. I will stay out of this forum for personal use, if that's what you wish, but feel you have a lot of understanding and information I can use. TC! JD

[SallyC]

You are more than welcome JD, to receive and give support here.:) Many of us with MS do have the brain lesions, so our eyes are sensitive to certain fonts and graphics.

I would like to ask you to please use the default fonts here, as some of us find your bright pastel colors hard to read.

Thanks and Welcome.

[AGR_UK]

I always describe MS to people who know nothing about it - as a condition of broken nerves.. People understand what a broken leg is, so I just equate that to a myraid of broken nerves in the body - helps to symplify matters and put things into perspective for the 'uninitiated' :)

[Cherie]

What Is an Autoimmune Disease?

http://www.multiplesclerosis.com/admin/templates/featuredarticles.aspx?articleid=349&zoneid=37

Multiple sclerosis (MS) is generally classified as an autoimmune disease. These are diseases are due to the body's turning on itself and attacking its own tissues.