New Jersey Conference

Cort

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The New Jersey CFS Association (NJCFSA) and Monmouth Medical Center will co-host the NJCFSA Fall 2009 Conference on October 18th in Eatontown, New Jersey. The conference, entitled, "New Initiatives in Treatment, Diagnosis, and Disability for Chronic Fatigue Syndrome (ME/CFS) will feature Dr. Derek Enlander, Dr. Susan Levine, Dr. Malcolm Schwartz and attorney, Jason Newfield. For more information on this conference, please visit the NJCFSA web site: www.njcfsa.org.
 
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_Kim_

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I've decided to go to this conference tomorrow. I will report back what Dr.s Enlander and Levine have to say about XMRV.
 
A

Aftermath

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I've decided to go to this conference tomorrow. I will report back what Dr.s Enlander and Levine have to say about XMRV.
I'll be looking forward to it.

Dr. Levine is by far my favorite of all of the physicians I've seen for this illness yet to date. Very bright and always open to new ideas.
 

MEKoan

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Kim,

Thank you so much for this terrific report! This is a really nice little piece of reporting which must have taken a huge amount of effort.

I'm impressed and grateful!
Koan
 
K

_Kim_

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Koan,

Thanks for the kind words. I don't think much new was presented today, but it sure felt good to hear both of the doctors acknowledge DeFreitas' work. And it was great to be in an atmosphere of hope.

On a personal note, I experienced a surprising reaction from some of the CFS patients that I spoke with. One of them commented that I didn't "seem sick" and another said that I "looked pretty good for someone with CFS". I might have expected comments like that from the uninformed, but I was shocked to hear that from other patients. Next time I go to one of these events, should I skip my morning shower and fore-go the mascara so that I look the part of the sick CFS patient? Shheeesh!
 
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Kim, sorry other CFSers were insensitive. Gee whiz.

So Enlander will test, but you have to be a patient of his? I'm in NY and so is he. I wonder if he will take patients from other NY docs.
 
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_Kim_

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Kim, sorry other CFSers were insensitive. Gee whiz.

So Enlander will test, but you have to be a patient of his? I'm in NY and so is he. I wonder if he will take patients from other NY docs.
Jenbooks, I got the impression that Enlander's grant to test for XMRV won't be exclusive to his practice. We'll see what kind of patient criteria he sets for his study. I'll keep you posted.
 

Marylib

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Insensitive remarks

Oh good grief. Sorry you had to put up with someone telling you that you look well! Who knows what other ME/CFS'ers are thinking when they say that?

Next time they say that you could fall to the floor in a faint (pretend hopefully) and that might get the message across :)

Great report -- thanks for all the effort.
Marylib
 

Finch

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Thanks Kim!

Thank you for going to this conference. Your report is excellent and much appreciated! Sorry to hear there are ME/CFS people out there who seem to be competing for who's sickest by what you look like! There will always be those, though.
 

MEKoan

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On a personal note, I experienced a surprising reaction from some of the CFS patients that I spoke with. One of them commented that I didn't "seem sick" and another said that I "looked pretty good for someone with CFS".
OMG! That's... that's... I'm dumbstruck.

Maybe they wandered in from some other meeting. I can't quite wrap my head around another patient saying that in 2009!

If you have MS no one expects to be able to see evidence of your illness. Nor do they if you have virtually any other illness. People are not advised to do a breast self exam if they start to look peeked. Nor are they advised to get a CAT scan if they find themselves looking drawn. Why we have to look like death is beyond me.

I am very pale. When I feel ill or tired, I'm terribly pale. The first time I went to the doctor without any colour artfully applied to cheek and lips she commented on how pale I was, checked my records and said: You're not anemic. Then, as she watched, I coloured myself in. I hope she remembers but I doubt she will.

I am also reminded of the time my brother told me about a friend of his who has MS. He, with tears in his eyes - he's very sentimental, described how, even though she has MS, she smiled bravely and leaped into the air. She has RRMS, has lost no functioning and has been in remission for years. But, she is seen as being very brave, and more than a little inspirational, because she jumps into the air. If we were to jump into the air, it would be proof positive that there's nothing wrong with us.

One expects this from brothers. One does not expect it from other patients. I would suggest, if I may be so bold, that you be ready to say, "You too!" should it ever happen again! Pay not attention to what they happen to look like, that's of as little consequence as you looking good. Just say it. :p

Thanks again for all your hard work!

Peace and patience,
Koan
 

Andrew

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Hi Kim. Thanks for the great report! I'm glad you listed the protocol. Even without detail, I can show this to my doctior. And if he is interested, he can try to contact Enlander.

Since we are talking about New Jersey, I have a recollection of the New Jersey legislature voting in favor of a CFS research center a few months ago. Did the governer approve that? Or do I remember things wrong.
 

Nielk

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Kim did a great job reporting on the conference. I also attended with my husband. I am a patient of Dr. Enlander and I asked him during the break about
the study he is starting and he said sure I can be part of it and I overheard another woman asking him about it and he said all you have to do is come to my office in Manhattan. I am not sure if they are set up for it yet. I have to call the office to find out but I can let you know. As far as interacting with the
other people there, I did not have any negative comments that Kim mentioned. It was more like people searching for answers or avenues which they did not know about. Like Dr. Enlander said right now there is no cure. Some people are helped by certain protocols but not CURED.
 

consuegra

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NJCFSA conference

I was at this conference and this is a great report. Thanks.

I had a slightly different take on both Dr. Enlander's and Dr. Levine's take on XMVR. I was surprised that they were both so cautious. I think they feel that they have seen this before, and, while they might be excited, they were very circumspect. Both talked of the obvious need of replication by other researchers. Dr. Levine seemed much more reserved, and we must remember that she was amongst the debunkers of deFreitas. Dr. Enlander, by his nature, is very reserved. So I personally did not get anything that was useful to me out of their comments.

Chris

http://cfspatientadvocate.blogspot.com
 

Cort

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I highly recommend Chris's piece - he always has interesting insights.

I just want to throw in that looking over the DeFreitas research it wasn't just the CDC that couldn't replicate it; there was the Gow team in the UK and a Japanese team that looked for HTLV-II viruses. Another CDC study a year later took a broad look at a variety of retroviruses they didn't find any evidence of them.

I'm not sure why the CDC in particular came in for so much criticism. There are probably things that I don't know.

It looks like there are multiple replication efforts getting underway very quickly; there's the CDC:eek:, Dr. Lloyd, Dr. Kerr and I think someone else. I imagine the Japanese are all over it as well. I have been told that there's also a National Cancer Institute study that should be published in the near future.

We'll also probably get some pretty large studies I would think looking at how commonly XMRV is found in the general population because of the blood bank issue.
 
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Looking "Sick"

Koan,

Thanks for the kind words. I don't think much new was presented today, but it sure felt good to hear both of the doctors acknowledge DeFreitas' work. And it was great to be in an atmosphere of hope.

On a personal note, I experienced a surprising reaction from some of the CFS patients that I spoke with. One of them commented that I didn't "seem sick" and another said that I "looked pretty good for someone with CFS". I might have expected comments like that from the uninformed, but I was shocked to hear that from other patients. Next time I go to one of these events, should I skip my morning shower and fore-go the mascara so that I look the part of the sick CFS patient? Shheeesh!
I am on the "more well" end of PWCs as well. I am probably better off than 85% of ME/CFS patients, yet I am only about 20% of what I was before I got sick very suddenly over ten years ago with a cold like illness.

My cardiovascular capability did not take that much of a hit for some reason. I can still walk quite a bit, and even do some running (it's the only thing that helps cognitive issues for me).

On the other end, I went from lifelong 90th percentile for my age in strength exercises to about 25th--with no ability to improve. I went from feeling rested on 6 hours sleep (with no ability to sleep more than 8) to sleeping 12-15 hours regularly. I had a positive tilt table test and SPECT scan.

I spent two years at home before I finally forced myself to work full-time (barely). I still feel tremendously for those who are housebound and do not have the energy to even get out of bed. They are truly the sickest and deserve the most help--and I know that it takes every last effort for some of them to get up and take a shower each day.

Still, I do not appreciate being looked down upon by some of these people, it takes every bit of my last effort to struggle through each day before coming home to dive upon my bed.

Bottom line to the very ill: yes, we are not as sick as you (and we feel tremendously for you). Still, our daily lives are a lot closer to what you experience than what healthy people experience.
 
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"Still, I do not appreciate being looked down upon by some of these people."

Do people really look down on you? You've gotten negative responses from other CFSers because you work?
 

Andrew

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I'm not sure why the CDC in particular came in for so much criticism. There are probably things that I don't know.
I tend to focus on CDC because they have a history of mucking up CFS research. Also, DeFreitas offered to sit side by side with one of their techs and teach him exactly how to do the test. The CDC refused, claiming that this would cost extra, and they didn't want to overspend. This is ridiculous, considering the magnitude of the implications of a retrovirus, and also indicative of their lack of professional level response. It is also absurd in light of the fact that they were spending CFS money on other illnesses, and didn't seem to worry about that.

But you are right. Several labs that could not replicate. One could, though, after one of DeFreitas's assistants went there to help. This makes me think that maybe she had something there, but the method had to be taught in person.

OTOH, I think the National CFIDS Foundation in the last few years hired a lab to try to replicate Defreitas's work. They tried her method and variations of it and were not able to get positive results.