A Celebration of Hope and Progress

February 8, 2013

In the first of a series of articles by Phoenix Rising writers on the Institute for Neuro Immune Medicine’s Patient Conference at Nova Southeastern University, Vonnie Kennedy gives an overview of the morning session.

Nancy Klimas presentingI was lucky enough to attend the morning session of the 2013 Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and Gulf War Illness (ME/CFS and GWI) Patient Conference at NSU on Saturday, January 26.

The conference was a celebration of the February 12 opening of the Nova Southeastern University (NSU) College of Osteopathic Medicine’s (COM) Institute for Neuro Immune Medicine (INIM).

INIM’s Big Plan: Finding Effective Therapy for ME/CFS and GWI

Nancy Klimas, M.D., Professor of Medicine, and Chair for Clinical Immunology, Director of the NSU-COM Institute for Neuro-Immune Medicine, and passionate host described the goals, mission, and structure of the organization. Over 250 people were physically present in the audience. Over 350 were online watching the live webcast.

Dr. Klimas, who has an established clinic and research site in Miami, was thrilled to declare the opening of the second site at the NSU Davie Campus. This state of the art facility will include research labs, clinics, and conference facilities. Its unique design will incorporate clinicians, educators, therapeutic modeling, and research experts under one roof creating a ‘one of a kind’ institute in the United States for treating patients with ME/CFS and GWI and other neuro immune conditions. The latest tools and technology for genomic practices for studies of neuroinflammatory and neurodegenerative disorders are also in place for diagnostics and treatment.

Voices of Hope: patients with stories of recovery

In this segment Dr. Klimas introduced three of Dr. Rey’s patients and asked each of them to share her/his story from discovery of the illness to each one’s improvement since the diagnosis.

Gail, a retired professor (age 67), noticed warning signs at age 60. She struggled with unusual tiredness, taking forever to get over a cold along with other symptoms until she found Dr. Irma Rey in 2010.

After blood work showed that she had little or no immune system, Dr. Rey started Gail on a series of supplements and medicines. Within a few months, Gail started feeling better, but unfortunately, decided to stop taking the regimen that Dr. Rey had prescribed and within weeks her symptoms returned. Gail, after following doctor’s orders once again, went back on the supplements and meds. That was 2 years ago, and today, Gail is feeling great.

Sue is a captain and pilot for American Airlines and currently on long-term disability. Sue came down with a never ending cold in 2007. Along with stress from her job, sleep deprivation and other malaise, Sue became progressively worse. With the help of Dr. Klimas, Sue has learned to monitor her mind and body and no longer pushes herself to do workouts that she once considered normal. She knows her limits and listens to her body.

While Sue can no longer be a pilot, she joked that the airline company was more than happy to provide her with long-term disability insurance to keep her out of the sky.

Dan, a retired advertising executive and an avid fisherman, caught the stomach flu in 2006 and was bedridden for days at a time. He would sometimes feel well enough to carry on a semi-normal day, but couldn’t resume fishing without severe consequences. Before agreeing to a clinical study in 2010, he would sometimes fall unconscious or be oblivious to his surroundings. The study called for changing his nutritional routine, which also resulted in a 16-pound weight loss. He has not had a ‘crash’ since and considers himself 80-85% back to normal.

Dan believes that limiting his physical activity and stress levels (he’s chosen yoga and meditation) is the answer for him. He also attributes much of his success to losing weight, giving up alcohol and drinking 98 ounces of water per day.

“Don’t fight your illness. Accept it,” says Dan.

The Basics: treating ME/CFS and GWI

Irma Rey, M.D., Director of Medical Education INIM, NSU-COM, explained specialized treatment plans for ME/CFS and GWI. She’s found that managing these illnesses are based on individualized treatment.

For example, some patients (such as the attendee sitting beside me) may pass out in the middle of an exercising routine while others tend to tolerate moderate workouts.

In many cases, patients respond positively to only an increased level of supplements and/or therapy while others may need to be treated with more aggressive measures. Dr. Rey stressed that patients are not alone and should seek the help of experts to determine how to correctly treat the illness. She also encouraged patients in the area to sign up for clinical research trials.

Understanding your limits: a key to restoring fitness

Connie Sol, MA Exercise Physiologist, gave an in-depth and highly scientific presentation about how the fitness equipment works at the facility. She reiterated that patients need to recognize their limits when exercising or doing any type of physical activity. She urged people with chronic illness to understand that pushing themselves physically is no longer the answer when struggling with chronic illness.

The Important Role Family and Partners play in Coping with Chronic Illness

Dolores Perdome, Ph.D., LCSW discussed how vitally important it is for family and friends to support and encourage loved ones who are coping with chronic illness. Several people in the audience remarked about how family members sometimes “just don’t get it”. The institute offers counseling for partners and families.

Dr. Klimas concluded the morning session by answering questions and offering suggestions such as:

  • Cutting down on eating meat
  • Considering mindfulness training
  • Growing a backyard garden to eliminate toxins
  • Drinking 2-3 quarts of water per day

The theme of the conference “A Celebration of Hope and Progress” was clearly evident in the warm, caring enthusiasm of Dr. Klimas and her team. The excitement of the audience and staff was truly genuine. The opening of the new clinic and the mission to educate, advocate, and support patients and families promises to be a huge success.

Click here to find out more about the NSU-COM Institute for Neuro-Immune Medicine and/or to watch the video from the conference.

 

Vonnie Kennedy is a freelance writer based in Fort Lauderdale, Florida. She writes and blogs about women’s health and wellness.

 

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25 comments

{ 25 comments… read them below or add one }

SOC February 8, 2013 at 3:11 pm

What? No talk about infections or immune modulators?

I've long since accepted that doing more than my body can handle makes me worse. I listen to my body. I'm doing as much as I can routinely do without relapsing. I've cut my stress to as close to nothing as any human can achieve. I drink my 3 liters of water daily, take my antioxidants, thyroid and sleep meds. We've cleared my infections (as far as we can tell). Am I hearing the INIM saying that this is the best I can get?

I can see that if they're talking to inexperienced patients, the whole issue of pacing needs to be addressed. If you're not pacing properly then you're going to get worse — and feel worse. Okay, got that. Old news. What I want to hear is where we go from here.

searcher February 8, 2013 at 3:34 pm

I watched the video on the Nova website and it actually bummed me out a little. They do mention immune modulators as part of the treatment, but I wish they had some 100% recovered patients in the "recovery" session. I am optimistic and really believe that there are 100% well former patients out there, but none of the three are working (2 are retired and one is on LTD) and the discussion seemed to focus a lot on reducing stress, staying under our outrageously low Anaerobic thresholds, and accepting limitations. If they called the session "patients with stories of not feeling as horrible as they used to" it would have been more accurate. There's nothing wrong with that, but it's not a recovery to me.

SickOfSickness February 8, 2013 at 8:47 pm

Yeah those patient stories are not very good.

Tally February 8, 2013 at 9:10 pm

I'm also a bit disappointed. Reduce stress. Drink water. It makes it sound like they are taking this illness way too lightly. I know that's not the case, but it does come off that way.

I am not stressed. How can I be stressed being bed bound, all the friends long gone living their lives? I probably have the least stressful existance on this planet. And of course I drink water, that's a primal instinct isn't it? And I still have trouble walking more than few meters. I wish the answer was as simple as meditating and drinking water. Ah.

Little Bluestem February 9, 2013 at 4:00 am

This was the morning session. I presume there is more to come and hope it will improve.

Vonnie Kennedy February 11, 2013 at 12:00 pm

Hey there folks,
I was only able to attend the morning sessions. I believe another writer will be posting an article about the afternoon sets. But, as a person who doesn't suffer from ME/CFS, I found much of the presentations to be too scientific and hoped the audience understood more than I did. It sounds like those of you who watched video (and read this article) didn't hear anything new and I agree with your comments about the patient stories. I was surprised that Dr. Klimas couldn't present patients with success stories. I was happy to hear that they were no longer bedridden, but it would have be nice to hear about people who were able to go back to work or resume a more active life.

Thank you for the feedback. I'm learning from your comments. :)

Vonnie

peggy-sue February 11, 2013 at 12:49 pm

Cutting DOWN on meat when many recommed that meat consumption should be increased – that carbohydrates are really the no-no -
And no way would I drink that amount of water in a single day. I don't have enough energy to go to the loo that often.
There's a huge myth around now about drinking tons of water – it's the bottled water industry behind it.
I know we often have low blood volume – but drinking gallons of water is not the answer and it can cause harm in itself.

jimells February 11, 2013 at 1:23 pm

Really? Cut down on meat and grow vegetables? That's all they got? What's happening to Dr Klimas? This article reminds me of another recent discussion about her new direction, and it's not one most folks here would support…

http://forums.phoenixrising.me/inde…ioning-exercise-in-me-cfs-on-corts-blog.21504

Jenny February 11, 2013 at 1:36 pm
peggy-sue

Cutting DOWN on meat when many recommed that meat consumption should be increased – that carbohydrates are really the no-no -
And no way would I drink that amount of water in a single day. I don't have enough energy to go to the loo that often.
There's a huge myth around now about drinking tons of water – it's the bottled water industry behind it.
I know we often have low blood volume – but drinking gallons of water is not the answer and it can cause harm in itself.

I agree that cutting down on meat sounds at odds with other recommendations. But 2 quarts is about 2.25 litres. I drink more than that a day usually and feel a bit better if I keep to about 2 and a half litres. But it's tap water not bottled.

Sasha February 11, 2013 at 1:40 pm
Jenny

I agree that cutting down on meat sounds at odds with other recommendations. But 2 quarts is about 2.25 litres. I drink more than that a day usually and feel a bit better if I keep to about 2 and a half litres. But it's tap water not bottled.

Although Dan Moricoli (one of the patients) said that he had cut down on meat, I don't recall Dr Klimas recommending this. I could be wrong, though.

peggy-sue February 11, 2013 at 1:43 pm

I probably only drink about 1 litre a day – between 2 coffees and 3 mugs of very diluted juice – but there's a lot of water in the food I eat too.
This keeps me perfectly well hydrated (but I do live in a cold climate).

I did try for a while, to drink a lot more to get my blood volume up – even using rehydration salts to help me keep it in, but I still just spent a lot more time in the loo and my tonsils were uncomfortably awash.

There's nothing wrong with good old tap water!:thumbsup:

heapsreal February 11, 2013 at 1:53 pm
Vonnie Kennedy

Hey there folks,
I was only able to attend the morning sessions. I believe another writer will be posting an article about the afternoon sets. But, as a person who doesn't suffer from ME/CFS, I found much of the presentations to be too scientific and hoped the audience understood more than I did. It sounds like those of you who watched video (and read this article) didn't hear anything new and I agree with your comments about the patient stories. I was surprised that Dr. Klimas couldn't present patients with success stories. I was happy to hear that they were no longer bedridden, but it would have be nice to hear about people who were able to go back to work or resume a more active life.

Thank you for the feedback. I'm learning from your comments. :)

Vonnie

Vonnie, its good to see someone like yourself spreading the word about this illness that is poorly misunderstood by everyone that doesnt have the illness. I hope u continue to take an interest and write more articles on this subject. I understand u write for womens health, can i just say there are alot of guys with this too. I think for some guys maybe your articles in the future could help women who have husbands etc with cfs/me to understand them better too. The saying , happy wife happy life. there should maybe be a saying sick hubby, understanding wife :). Im very glad i have an understanding wife. Of interest for future articles, dr lerner and dr montoya have treated and done alot of research into immune/infectious causes of cfs/me that i think can help legitamize our illness and create more awareness.

thanks again.

SOC February 11, 2013 at 3:05 pm
Vonnie Kennedy

Hey there folks,
I was only able to attend the morning sessions. I believe another writer will be posting an article about the afternoon sets. But, as a person who doesn't suffer from ME/CFS, I found much of the presentations to be too scientific and hoped the audience understood more than I did. It sounds like those of you who watched video (and read this article) didn't hear anything new and I agree with your comments about the patient stories. I was surprised that Dr. Klimas couldn't present patients with success stories. I was happy to hear that they were no longer bedridden, but it would have be nice to hear about people who were able to go back to work or resume a more active life.

Thank you for the feedback. I'm learning from your comments. :)

Vonnie

SOC February 11, 2013 at 3:07 pm
Vonnie Kennedy

Hey there folks,
I was only able to attend the morning sessions. I believe another writer will be posting an article about the afternoon sets. But, as a person who doesn't suffer from ME/CFS, I found much of the presentations to be too scientific and hoped the audience understood more than I did. It sounds like those of you who watched video (and read this article) didn't hear anything new and I agree with your comments about the patient stories. I was surprised that Dr. Klimas couldn't present patients with success stories. I was happy to hear that they were no longer bedridden, but it would have be nice to hear about people who were able to go back to work or resume a more active life.

Thank you for the feedback. I'm learning from your comments. :)

Vonnie

Thanks for the report, Vonnie! FYI, it's Dr Rey, not Ray. :)

SOC February 11, 2013 at 3:11 pm
peggy-sue

I know we often have low blood volume – but drinking gallons of water is not the answer and it can cause harm in itself.

If drinking 2-3 qt of water daily (which in what is being advised, not gallons) is not the answer, then what do you propose is the answer?

SOC February 11, 2013 at 3:23 pm

I looked at who, exactly was advising we cut down on meat and grow a garden — Dolores Perdome, Ph.D., LCSW.
LCSW as in Licensed Clinic Social Work, so not exactly an expert on ME/CFS dietary or exercise issues. I chose to ignore all the advice from her talk except perhaps those topics in which she's actually trained. ;)

The whole gardening thing had me laughing and crying at the same time. Gardening? Really? I wish! I had a huge landscaping job done just before I got ill because I thought I'd spend my post-child-rearing years tending a big yard/garden. Hah! It's all going to wrack and ruin because I don't have the energy to tend what's there much less lug out the old garden tiller every spring and till up a vegetable patch to tend to on a daily basis. :rolleyes:

I think we got the standard ME/CFS-clueless "live a healthy life and you'll feel better" speech. Clearly no knowledge about the illness there. Hopefully that will change with INIM associated with the university.

Vonnie Kennedy February 11, 2013 at 3:46 pm
heapsreal

Vonnie, its good to see someone like yourself spreading the word about this illness that is poorly misunderstood by everyone that doesnt have the illness. I hope u continue to take an interest and write more articles on this subject. I understand u write for womens health, can i just say there are alot of guys with this too. I think for some guys maybe your articles in the future could help women who have husbands etc with cfs/me to understand them better too. The saying , happy wife happy life. there should maybe be a saying sick hubby, understanding wife :). Im very glad i have an understanding wife. Of interest for future articles, dr lerner and dr montoya have treated and done alot of research into immune/infectious causes of cfs/me that i think can help legitamize our illness and create more awareness.

thanks again.

Thanks, Soc, I'll certainly keep that in mind. I don't know where you're located, but I heard Dr. Klimas mention that Canada and the UK have different theories than the U.S. about how to treat the conditions, but she didn't elaborate. I'd love to hear more about that if anybody here has heard this.

Vonnie Kennedy February 11, 2013 at 3:49 pm
SOC

Thanks for the report, Vonnie! FYI, it's Dr Rey, not Ray. :)

Good catch, Soc, so sorry. I'm recovering from eye surgery so sometimes words blur together. Maybe I can get the editor to change that. :)

Vonnie Kennedy February 11, 2013 at 3:56 pm

Hi all,

Since my article was posted, the university website changed the location of the webcast.

You can view the videos here.

Hope this helps.

Sasha February 11, 2013 at 4:02 pm
Vonnie Kennedy

Hi all,

Since my article was posted, the university website changed the location of the webcast.

You can view the videos here.

Hope this helps.

Thanks, that's v. helpful! :)

peggy-sue February 12, 2013 at 4:24 am

SOC, I'm not sure what you mean. I don't have answers, I'm just aware that there has been a general campaign to drink 8 large glasses of water a day (at least there has been in th uk) that it's the bottled water industry hype and it's just not true.

I don't know of any recommendations for ME about drinking tons (quarts;) ) of water. If you don't do something to make the water stay in your body, ostensibly to bulk up blood volume, (I don't know if this happens though) all that will happen is you will pee it out again. If you don't, you will start putting all your electrolytes out of kilter.

My own experimentation with using rehydration salts did not work… not when I used proprietary uk ones.
I did find some Spanish ones my OH had brought back from a cycling holiday, and I used them.

For some strange reason, they really did seem to help with my energy. But I ran out of them and they seemed horribly expensive to buy from inside the uk.
Later on, I found otherPWME had had considerable improvements using the same ones, (all anecdotal, gleaned from forums I found comments on while googling the stuff. Not forums I'm signed up to.)
However, I haven't pursued this or tried to get my mitts on more of the stuff since.

Little Bluestem February 14, 2013 at 12:13 am

Have you looked at the ingredients in the Spanish product to see if you could make something similar yourself?

peggy-sue February 14, 2013 at 7:54 am

I thought I'd replied (my pc cut out in the middle though).

I did work out the ingredients :) I must have had my brain on that day – but I didn't have the relative proportions of each, which I assumend was what was important.
The big problem with proprietary ones in the uk is they're all full of aspartame. I'm sure the Spanish one had glucose.
It was all a very long time ago and I didn't persevere with trying to get hold of more because of the cost.:redface:

Desdinova February 14, 2013 at 8:08 am

So they're going to focus on symptom treatment and management and encourage life style management. Looks like a lot of veteran ME Docs and researchers are refocusing, moving on or retiring.

ukxmrv February 14, 2013 at 8:12 am

This is hardly a celebration of hope and progress. From what has been posted it seems to be very poor quality and nothing to do with ME.

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