MS and Mental Illness - Article in my local paper
 

http://www.knoxnews.com/news/2008/apr/06/040608greg/

After thinking about this all day, I decided to post this article for everyone. It's a heart breaking story. From what I read, his mental illness didn't start until after his treatment with Beta started.

Some people think that mental illness automatically comes with MS from the comments and that burned my rear! No wonder so many talk about disclosure.

Curious what everyone thinks.

Thanks

OMG! That story is so sad! There will always be those few idiots who just have to make comments like that :(. I wish there had been more info about what happened with the Beta. It sounds like a SEVERE reaction to the interfon. I feel so badly for that poor family. I wish that there was more widespread, accurate knowledge about MS. But, sadly, I didn't know much about the disease until I had it myself :(

Wow....what a poorly written piece of work. At first I thought the author was confused and saw the two MS and mental illness as TWO diseases, but wasn't writing well....but by the end, I think he thought of them as the same.

What is really sad is that people who live in this readership, and know people with MS are sadly misinformed. And you know there are a LOT of people who BELIEVE what they read in the paper.....If I were you, I would write a letter to the editor. I would also ask your neuro to do so. Send this to your local chapter of NMSS and MSF....

Sensationalism. That is all this article is. Sad thing, for the readers, is that we all aren't sensational!

wow heartbreaking is an understatement,

my ex is a bi polar schizophrenic and was able to hide and or contain it to a degree, till a certain thing happened in her life that acted, for lack of better word, as a trigger, and off the deep end she has been ever since, osama and the leader of iraq were both after her,

its a horrible illness, and as far as I can tell I dont think there is a state in the union that has a good plan to deal with mental health, with other than a big band aid, medicate for 15 days calm them down, safe guard them and release them out to the general population, that seems to be the status quo as to state care, unless a criminal act is involved,

now whether this gent was bi polar schizo prior, and it laid dormant and was triggered by the stress of the ms news, or the stress of his friends passing, I dont know.

it would, in my eyes, make more sense, saying this triggered it, then saying the MS caused it, sure I have gotten depressed, at times and snapped(when on high doses of steroids) but i do fix it and i do keep things in check I dont fore see me going over the edge, like this,

have I thought of telling deb to take kids and go yes, why cause i dont want to deal with the guilt I have inside of what my illness is and will do to this family down the road, and that is a possibly not a definite, thanks to some meds.

but I have not done so, for it would not be fair to her or my children they care for me and i for them, so the feelings of what he is doing are there for me but not to the severe degree he has them. which really makes me think this scizo-affective disorder is sort of like the ms disorder dormant till its triggered in a number of us and what triggers it is still open to discussion and debate.

I pray that some miracle graces this families life and lifts them from this pit of despair,

Great...if someone in my extended family were to read that article, they'd be ready to get me the jacket that buttons up in the back, and the Thorazine smoothies and a nice "apartment" at the local mental hospital.

Some of my relatives are the type to believe that MS would cause mental illness. I'm betting it's just a certain percentage...like a certain percentage of MSers will be in a chair, and a certain percentage of MSers will have serious vision problems. It just depends on what parts of the brain gets affected.

Not everyone who has MS is going to end up with a mental illness. I know I have my own weirdness to deal with, but I dont think that I currently have a problem with MS-induced mental illness unless I consider my mother's head injury induced dementia as my problem.

I really hope the mis-information in that article doesnt get advertised too much, I'd really hate for people to think that all of us will turn into slavering lunatics just because we have some neurological weirdness going on.

Bird is right, a letter to the editor is a must. From each of us.

His story is definitely sad, but this story is entirely irresponsible and was obviously run as a Sunday space filler. The writer did a grave injustice not only to MS patients, but also to mental illness patients— the implied connection is entirely misleading.

I feel that Ansley Haman (may be reached at 865-342-6341) and her editor should hear from as many MS patients as possible and Knox.com should print an apologetic retraction.:mad:

What I find very odd about this is his dx of schizophrenia.

My mom was schizophrenic, and so were a few other of the extended family; an uncle and two cousins, and possibly my Grandmother.

Schizophrenia is like MS in that it is more prevalent in families with a history of mental illness, but of course it happens in families without a history of it too. My sisters and I were very afraid of ending up with this mental illness, and of course we all worry/worried about our kids too.

We were told that if a person is going to get schizophrenia, it would be blatantly obvious there was a serious problem before the age of 30, and that if there are no signs of something amiss by then, we wouldn’t get it. Perhaps DocJohn, if he is reading, might be able to clarify this . . .

Quite honestly, I was afraid to tell anyone about my physical problems because my mom imagined all sorts of neurological concerns too (in addition to the "clear" mental illness problems she suffered from). She would often say that her head “felt like it was blown off on one side”, body parts “burned”, her hearing was acute and distorted, etc. Of course she was on many meds too, so perhaps some of what she went through was just side-effects and not related to the mental illness at all.

This guy is 53, and when he was dx with MS and mental illnesses he he must have been in his 40’s. The story seems to indicate that he was in good mental health up until he was hit with the MS, and then the mental illnesses.

I have a hard time believing that MS can cause schizophrenia, but believe it’s possible to end up bi-polar because of MS. I’ve actually heard of many people who have both bi-polar and MS over the years, but not one with a schizophrenia dx with MS.

Odd story.

Cherie

poorly written article
 

While this family's story is indeed sad - I don't think we got a full or realistic picture.

This article was SO poorly written. I think the point that was trying to be made - If I had to guess - is the discussion of persons with co-occuring disorders being in the prison system. They have no system in place to deal with the needs of someone who has a severe mental illness AND a physical condition such as MS. However, he (the author) did not explain this at all - and made some random correlations - or rather, leads the reader to form random correlations between MS and schizophrenia.

I'm not sure what his symptoms from MS were...but as far as I know there is not a link to schizophrenia. Definitely a link to depression (not from when a person finds out they have MS and then get depressed - depression is actually a sx of MS) - and by extension then, even bipolar disorder (formerly known as manic-depression). Not to mention, the writer doesn't even give good examples of him being schizophrenia and thus I question even that dx, unless he heard it from a family member or doctor.

Wow - the article is beyond misleading - it is downright disturbing how poor of a job the author did and what an injustice he has done to people who have MS - and people who struggle with schizophrenia! While I don't consider myself an activist, I certainly do think I will take action about this and contact the editor.

I certainly hope this article wasn't picked up by other papers! (I can't see the AP running such a piece of crud....but these days, you never know!)

Thanks for sharing this with us,

~Keri

ugh that is something that has always worried me.. i have no family history knowledge being adopted so i always live in a little fear of what is waiting around the corner for me..

schizophrenia has been one of my biggest fears ever since i was DXed with panic/anxiety disorder at 17... i had and still do have thoughts that are so loud and racing at times of high stress that could be misinterpreted as voices if i tried to explain them to someone who knew nothing about anxiety disorder...

after i was Dxed MS i kept thinking oh no what if MS makes me crazy... :rolleyes:

BTW: i have heard/read the same thing that if you don't have any signs of it by 30ish.. odds are pretty good you will not develop it... id also like to know how true this is..


i do believe MS can make people a little off... and i only say this because i have read countless posts from people with MS (myself included) that have heard/seen/felt things that are not there.. but none of them ever believed them as truth or real.. big difference from schizophrenia..

Oops...author is a SHE, not he
 

Just want to go back and correct that the author of the article is a she, not a he.

There is a link to email the author on the paper's website.... I was half tempted to email her the link to this thread so she can read for herself about the grave errors in her article....but don't feel it's my "place" to do something such as that.

(feature editor)http://http://www.knoxnews.com/staff/susan-alexander/

(vice prresident, finace)
http://http://www.knoxnews.com/staff/paul-abraham/

(Assistant Managing Editor-Presentation)

http://Michael Apuan (Assistant Mana...-Presentation)

the rest of the knox staff if you can find others that may serve us better
http://http://www.knoxnews.com/staff/

As a journalist and feature writer for several newspapers, I am absolutely appalled by this article.

This is the worst type of journalism--not only sensationalist, but destructively inaccurate. The author not only didn't bother to research her topic, but didn't stop to think that, by not doing so, she would cause untold pain and even harm to others with MS.

I think that not only the author but also her editor should be taken severely to task for the false information contained in this feature. It speaks to the poor journlistic ethics of not only the author and editor, but also apparently of this newspaper.

Let me repeat, as a journalist who makes my living writing for newspapers, I am offended and appalled!

I'll agree, very poor journalistic skills in this article.

That being said, in a small percentage of MS patients, psychosis can be caused by the disease or some meds used in the disease treatment. It makes me wonder if that was the case with this man.

Google psychosis and multiple sclerosis and you should come up with the numbers of those whose MS can lead to dementia or psychosis. You can also google psychosis and Betaseron and it's listed as a side effect.

So although the journalist does a poor job of defining this man's situation, it could be his MS or the Beta that caused it.

I don't know, but think the percentage of MSers suffering mental illness (not talking depression or other things), is equal to percentage found in general population. I've worked in long-term (older persons in Mentally Ill facility)mentally ill locked wards and have never met a MSer there. I watched teens and older people become mentally ill and besides not writing well, the person who wrote this article is clueless about many things IMHO. Geez, my 16 year old daughter writes better than that. The editor of my high school newpaper (where I was once active) would never accept such run-on drivel from us. TV and some of the Media really don't know Jack about most things but some people think if it's oin the paper or on TV, it must be true. Where was her editor?

Thought ya'll might want to see this. I know, I'm not the sweetest flower in the garden, but I don't claim to be sweet.:rolleyes:

-----Original Message-----
Sent: Monday, April 07, 2008
To: Haman, Ansley
Subject: Message via the Web site

"Your "article" implying a direct connection between MS and mental
illness was not only some of the worst writing I've ever seen, but
entirely irresponsible and grossly inaccurate.

Get more education or go make the fries at MacDonald's. Journalists
have a much higher responsibility.

I have MS and am deeply offended and infuriated by your utter nonsense."



----Writer's Reply-----

"Thanks for responding to the story. I worked hard not to imply that M.S.
caused the mental illness. I told the family's story, and that story is
that years after Greg was diagnosed he began Betaseron. Immediately
thereafter, he began experiencing these episodes.

I appreciate your response, and I hate that you felt offended. However,
I took great care to not make broader generalizations about mental
health or M.S. But each person's case is different, and I attempted to
stay true to Greg's story.

We welcome you to tell your story as well."

Thanks,
Ansley

Ansley Haman
Reporter
(865)342-6341
Knoxville News Sentinel
2332 News Sentinel Drive
Knoxville, TN, 37921
knoxnews.com

WOW, Thanks everyone!
 

I write a letter to the writer and to the President and Publisher. Cindy, thank you! Awesome! When I get irriated I tend to talk and write fast. My letter was somewhat long, but I was Pi**ed!

I will attempt to copy and paste. I went earlier and read some more of the comments and got further irritated, so I posted my letter there as well!“


My Letter:



These people”?? Multiple Sclerosis OR Mental Illness??

This story has offended me and many more people with MS. I just can’t help but wonder where the editor was last week? This is the worst type of journalism, pure sensationalism and destructively inaccurate. The author not only didn't bother to research her story, but didn't stop to think that, by not doing so, she would cause pain and even harm to others with MS, and those mainly who are newly diagnosed and read this. The writer, editor, even the President owe the community an apology and a retraction for horrific injustice done to the people living with Multiple Sclerosis and THOSE living with Mental Illness.

While I am so saddened by this family’s story, the two illnesses DO NOT go hand in hand. Who am I, do you ask? I am living with MS. While a lot of people with MS do suffer depression, so do cancer patients and anyone living and suffering with any illness. There may even be those with MS who are bipolar. Did MS cause this? Not exactly. Although it does depends on what part of the brain your lesions are located, MS is an individual disease, no one is affected the same. The drug Mr. Wolf was on, Betaseron is an interferon and all these drugs are known to cause depression in SOME people.

I believe not only did Mr. Wolf’s Neurologist did him an injustice, but so did our legal system! Bed sores from not being equipped to handle people with a debilating disease. Inexcusable!

This story is totally irresponsible! I am sure there are readers who know absolutely nothing about MS except what they read and hear will now automatically assume should meet or hear of someone with MS, they are mentally unstable.

I would also like to ask Ms.Hamon, Editor Jack McElroy and the President, Bruce Hartmann, did you happen to know last month was National MS Awareness Month? Did I see a story about that? Did you know the MS Walk is coming up on April 26th at the World’s Fair Park? Doubtful!

Why don’t you prepare a special about Multiple Sclerosis and talk to everyday people living with this disease and please do your research!

There is a forum called NeuroTalk in which people with MS and other Neurological illness and come and chat and talk to other’s who know how you feel and can get helpful advice. I posted this article tonight and I encourage you to go to the link I am supplying and read the responses.

http://neurotalk.psychcentral.com/thread42976.html

I have also forwarded your story to the National MS Society and my physicians.

Best Regards,

Ok this is my third attempt at this I tried adding to my other post and edit it but each time it did a 404 time out error on me, and after just rereading it I see it still isnt on my post,

I like that AMN i always use the phrase or "go flip burgers at bk"

I wrote one to each of the first three on that list, figured it would be pointless to write one to the journalist, and yes the term journalist is being used loosely. I had trouble last night on here and tried a few times to amend my post and agree with bird the manor of the post the conclusions and the over all quality, which was lacking in every sense of the word. Still however my heart pains for his son and that family and the countless others affected by problems such as these, in their lives. schizophrenia disorders are very hard to deal with as a third party, because you are limited to what you can do.

Ignorance and irresponsibility of ones position or title, there is no excuse for this. The tie in that was drawn between the two was grossly overstated and almost drawn to such a conclusion, that it gave everyone the idea that Schizophrenia was an automatic conclusion of MS. this was wrong

I am glad you posted this, makes you wonder how many other articles like this each day get through or reports on TV that are not well supported allowed to be broadcasted. there is an integrity that must be adhered to and we all have some obligations to this, in whatever it is we do each day.



peace
&
keep on truckin

Here's the writer's reply....
 

We are preparing an M.S. story for this weekend about another family's experience. Prior to publishing Sunday's story, we did extensive M.S. research and had planned to do a story for this weekend's walk. And as you see, our two latest stories focused mainly on Wolf's mental illness, which is separate from his M.S. except that his physical condition led to the bed sores, etc. in jail.

I would challenge your statement about sensationalism. This was one family's experience, and as we all know, each M.S. case, each mental illness case, each individual's case differs.

Thanks for your feedback, and thanks for reading.

Ansley

Ansley Haman
Reporter
(865)342-6341
Knoxville News Sentinel
2332 News Sentinel Drive
Knoxville, TN, 37921
knoxnews.com


I'm having trouble with "we did extensive research". I would be surprised if I hear back from the Editor or President.

Maybe her "extensive research" consisted of Googling MS and just picking any old link that they came upon, instead of actually doing real research and interviewing doctors and MS patients.

Apparently, doing "extensive" research and applying it are worlds apart in her mind. I noticed that she's gushing less with you. I hope that means that she's had her butt in the naughty chair up in the Editor's office since she replied to me.

I noticed that too! She didn't ask me to share my story and I'm local!:p I'm willing to bet "extensive research" did not involve speaking with the medical community or there would have been reference to it. Like Erin said, probably Googled.

Thanks, so much, Marcia, for this thread. And thanks to all who wrote to the Editor about it. You are the best.:)

"I will challenge your" what????

Now I'm MAD!!!! I do believe I'm the first one on this thread to use the word sensationalist! And I WILL write her and her BOSS a letter, and a letter to the editor to be published in paper, although I must say that after reading her two responses to you guys, I don't have much hope with her boss.....

Research? What did she do to research? Ask the family? Google the definition of Multiple Sclerosis?

I didn't want to be mad to write the letter! I'll try to write fresh in the morrow and send the letter in.....actually I will refer to her letter to each of you. I think I'll do good....and I'll post mine here tomorrow!

Yes, I got a kick out of "challenging" my wording! I KNOW you will do good! You go girl! Thanks for the email! :hug:

Look forward to reading your letter.

Your welcome Sally! Thank you for the encouragement. :hug:

Of course I lied and started writing the letter tonight! LOL I'll probably spend more time writing it, then she did researching MS!!!

LOL.....I love a bird with ruffled feathers! Wonder where Snoodles is, she is a neighbor! We could :Demonstration:

WOW! I am appalled by this article! But I am very glad it is posted and there have been letters sent off. Unbelievable! Hmmm. I say this, sure, someone can have both MS and some form of mental illness. BUT, I find it hard to believe that it's 'just the lesions' talking, per se, when it comes to emotions! People live with different levels of stress in their lives. Something that happens today can trigger some form of ptsd from one's past, certainly!

I've also been big on believing that schizophrenic reactions can occur from trauma. Certainly the scar tissue on the brain doesn't help the brain connect properly sometimes, but...I'm skeptical of anyone who would rather just stigmatize MS in such a fashion.

The story should have read. This poor family. Not only does the father have MS, but he also has Scizophenia. The trauma from the MS diagnosis set off a mental/emotional set-back.

For a community to support such literature, it's no wonder this gentleman's schizophrenic state got so out of hand. The one thing I know about schizophenia is the best course of treatment is Compassion, love and support. Yes, there are meds, but there has to be more than just meds to help a person heal from such a debilitating mental/emotional ailment.

That's enough out of me for the moment. :grouphug:

Marcia
I seen your comment on this page....I want to say great for u,thanks on the behalf of all of us msers.
I hate ppl like them ppl that dont walk in our shoes and dont take the time to look at it in our view.
The problem is ms DONT get any media attention that it needs.
So this makes the public unaware of its effects on its victims,and for the most part the family of its victims.

hugz,
aly:grouphug:

Well, you guys guess how long my original letter was? 886 words!

Since they only want 200 words, I got it reduced to 500 something!!! LOL

I sent it to the letters to the editor, the President, and the Features Editor.....

Here it tis!!!

Knoxville News Sentinel
2332 News Sentinel Drive
Knoxville, TN, 37921

RE: ‘Who’s going to speak up for these people?’ in Sunday's paper 4/6/08

April 9, 2008

Dear Editor,

I am one of approximately 400,000 Americans living with Multiple Sclerosis (MS) according to the National Multiple Sclerosis Society (NMSS). This newspaper article insinuated that MS and mental illness go hand in hand, but yet on the home page of the NMSS under symptom list, mental illness, bipolar, nor schizophrenia are listed. Multiple Sclerosis is NOT a mental illness.

No facts were given on this man's mental illnesses. The only two facts about MS stated were “MS is a chronic, often disabling disease in which the body's immune system attacks the central nervous system...” and then “...Betaseron, a drug designed to slow the effects of MS. “ This did not explain the disease to the general public whatsoever. And the scariest thing is that it read as if Betaseron was responsible for his mental illness. The paper could have educated the public and advertised the MS walk that was held in Knoxville.

This article did not reflect thoughtful research. Instead it reeled in poor journalism and sensationalism, starting with the headline and the pictures of the sweet children sitting on their daddy's lap. Speak for what people? The reader doesn't ever get a clear understanding of the answer to this question, until they read the very last sentence, in which one can presume that she is referring to mental illness.

What exactly was this article supposed to be about? Seems like the family asked for an article on mental illness and to raise awareness of the limited options for severely mentally ill. Using Greg Wolf's story, a great article could have been made addressing the prison system's inability to deal with the mentally ill. This also would have been a wonderful opportunity to give factual information given on his mental illnesses and on MS.

I feel for Greg Wolf, if he should see this article. The first sentence in this insensitive, poorly researched piece is “His family speaks of him in the past tense without realizing it..” Mental illness nor multiple sclerosis equals stupidity. The sensitivity directed towards him was ill felt. I feel sorry for the family who tried to have the public informed and appeared to be reaching out for help.

This article is an atrocity for people living with multiple sclerosis or with mental illness. I feel strongly that this article reflected very negatively on the community of Msers and the community of mental illness.

What is really sad is that people who live in this readership, and know people with MS are sadly misinformed. And there are a LOT of people who BELIEVE what they read in the paper. They expect the paper to be a knowledgeable entity.

I certainly hope that your paper does not normally engage in this type of sensationalistic publishing, when it seems to be the most widely read paper in Knoxville. Sensationalism. That is all this article is. Sad thing, for the readers, is that all MSers aren't sensational!

:You-Rock: Absolutely WONDERFUL!! YOU should be a journalist!:Bow:

Thank you!!:hug:

Bird that was well worded, would be interested in the other 300 words, that have been omitted.

has anyone gotten any kind of a reply other than a standard thank you for your comment type of reply and did anyone else have trouble with the links I made the first night.

i sent off letters, then i went back to write a second one, the following night and my links didn't work, not sure if it was my system or my mistake.

Of course not! Well, maybe they thought the standard reply and that they were having a "special piece" on MS this Sunday would shut us up, but as you can see with Robin's excellant letter, it's not happening!

I've only received a standard reply from the writer, which is disappointing. I was wondering if the article this Sunday, was a hurry up and shut them up idea. Someone in my doctor's office thought that as well. Regardless, I hope it is a well written article with "Professional Input" and not "researched".

Thanks, Frank for writing a letter, I hope the links work and if you need any addresses, let me know!

Frank, your links work fine when you delete the extra http://

It took me a while to figure that out!!!!

no answer to mine - I don't expect one, but I'm hoping it will be in the paper on Sunday!

Bird that was great! You did an awesome job of not only discussing how the author was a poor writer but how she missed the point.

I am sure that no one will hear an answer from the paper. Sad but true. However, hopefully it has made them aware that research is vital when writing about medical issues, particularly when it is about someone personally.

I have spoken to several people about the article
 

Just a quick note to let everyone know that I have spoken to the writer, the editor, the people at Beta Seron, the President and the board chair of the local MS chapter.
The editer has been in several meetings since this article was printed. He has also spoken with the writer and the gentlemen from the local MS chapter.
The writer has been to my house to run a human interest story about someone living with MS.
The editor has asked me to write a 650 word article to go along with the story. I started that piece and then forwarded it on to the President of the local chapter so that he could make sure it said what he wanted it to.
The folkes at the Beta Seron office have decided to watch the article to see if any other papers run it.
The local MS chapter is trying to coordinate with the editor what gets published.
My husband had his letter to the editor published in the paper on Tuesday.
I am hoping with the MS Walk on April 26 that the article and sidebar will show up next Sunday, April 20.
I am doing everything I can think of to correct this gross misrepresentation of MS.
If anyone has any idea or thoughts please let me know.
Thanks

Fantastic, well done as far as I can see, short of having the editor live in our shoes for a week, you did great.

Thank You

I am unable to find a letter to the Editor dated Tuesday April 8th ref the story, MS, or mental illness. Do you have a link? Thank You Sheena

Hi Sheena,

Kathy's husband's letter was in the actual paper on Tuesday, but not on the knoxnews.com. It was a great letter and I will see if she will copy it here.

Thanks for the sweet PM. :hug:

MS letter
 

Here is a copy of the letter my husband sent to the paper. Sorry it took so long.

Shame on Ansley Haman and the News-Sentinel for presenting Multiple
Sclerosis as a mental illness ("Who's going to speak up for these
people?"). Most of the picture captions and all of the front page text
talk about nothing but MS and the trouble this poor man has gotten
into - NOT as a result of his MS, but due to his bipolar and a
paranoid schizophrenic illnesses. Not until the very last page of the
article on the back page of Section B is the mental illness diagnosis
ever even mentioned. People that don't know much about MS and read
any, or even all, of the article are going to get the idea that the
disease is a form of mental illness. And they will now see anyone with
MS as mentally ill. Why do I care, and object to this false labeling?
My wife was diagnosed with Multiple Sclerosis 13 years ago and, ever
since then, she has researched the disease as thoroughly as anyone
possibly can. As a matter of fact, she routinely surprises her MS
doctors with her knowledge of the subject and frequently presents
research, findings and other information they were not aware of. So
she knows what is and is not involved where the disease is concerned.
As for MS and bipolar, paranoid schizophrenic or any mental illness,
there is NO KNOWN CONNECTION. And the only known mental concerns that
have presented with some patients taking Betaseron are depression and
suicidal thoughts. These would certainly not result in the kind of
actions described that led to the man's multiple arrests, as the
article would have you believe. At the very least, the News-Sentinel
should print a retraction and a public apology to the hundreds of
thousands suffering from MS. This man's plight is indeed great and
should be addressed. And public awareness does need to be raised for
both MS and mental illness. But the paper had no right casting the
mental illness label on Multiple Sclerosis sufferers - especially
since there is so little public awareness of the disease. In this
case, bad press is indeed worse than no press at all.