Article: Dr. Nancy Klimas Forms Neuro-Immune Institute on ME/CFS at Nova Southeastern University

Article: Dr. Nancy Klimas Forms Neuro-Immune Institute on ME/CFS at Nova Southeastern

You can view the page at http://forums.phoenixrising.me/content.php?513-Klimas-to-Forum-Neuro-Immune-CFS-ME-CFS-Institute-at-Nova-Southeastern

 

A card would be nice: a one-click button for donations would be even better. Is the new Institute set up to take direct donations from the public yet? It's year-end; they could maybe scoop up a few dollars at this festive time of tax-deductible donations...

Yes it is UrbanTravels. I think raising money will be one of her tasks actually. You can give to the University and then specify the fund set up for her

The new Institute will also be relying heavily on philanthropy, and has established a fund for that purpose, the NSU Institute for Neuro Immune Medicine fund. Specify this fund if you choose to consider a holiday gift though the NSU gift website: http://www.nova.edu/changingtheworld/index.html

 

Well, apparently it's not set up at the University's fund-raising page yet - it does not appear on the menu of options where you can designate your gift.

It's the same beef I had with the University of Miami - they make you jump through too many hoops to get your money to go where you want it to go. It was impossible, for instance, to set up a Causes.com donation "wish" and specify that it go to Klimas' fund at the University of Miami - you could only designate a gift to the University, which would then go to the University's general fund along with all other Causes donations at the end of the month. (For this, and other reasons, I don't use Causes any more.)

In this day and age of social media fundraising, it's important to have some way to donate with ONE click. I hope they'll get that set up for this Institute in the near future.

 

Wow this is such wonderful news and Im so glad she's got this job as she is so well liked. (I personally think its quite important that not only good ME specialists but also ones which cant be easily knocked or faulted in any negative ways are put into high places to take us to where the field of ME needs to go. It needs to be able to gain the respect of the other medical fields and doctors and likable doctors do help that cause.

 

I wonder if this is good news for the severely affected patients too? Since her "exercise" recommendations it seemed to me like Dr. Klimas is too out of touch with this patient group who needs help the most. Going forward, I hope each and every organisation and initiative will refuse to neglect the needs and characteristics those of us with severe disease have. This starts by offering home visits and home phlebotomist services and of course, although this has probably been discussed elsewhere at length, by making it absolutely clear that any level of "exercise" is extremely harmful to patients with severe M.E.

 

Not sure what you're referring to, but I haven't heard of Nancy Klimas advocating GET or anything of that nature for ME/CFS patients. She does recommend some exercise for patients who are able to tolerate it, and I think this is an extremely important part of ME/CFS management. For those of us who are not totally bed-bound, some degree of exercise is fairly essential, because without *some* activity, muscles atrophy and various manifestations of ME/CFS get worse (notably, OI.)

I think the best way to think of exercise for ME/CFS patients is as if it is a drug with important therapeutic value but with potentially extremely serious side effects, so administration and dosage need to be monitored VERY carefully. The error arises when people think we can "exercise" the way healthy people can, and continually increase the dose until we get to a "normal" level of physical activity, and neither of these things are true. The basic flaw in GET is that it does not acknowledge there is a hard limit to the aerobic capacity of ME/CFS patients (varying with the individual, but a limit nonetheless), and assumes that we can steadily increase our aerobic capacity because there is nothing fundamentally wrong with us besides deconditioning. Nancy Klimas is the *last* person on earth who should be tarred with that brush of ignorance.

 

There have been threads with video's detailing her recommendations for exercise, and it is indeed, "dosed like a medication" with something like 3 minutes of light (non-aerobic) exercise followed by 3 minutes of lying rest.

For me using exercise this way has been very helpful. Not only does it prevent the aches and pains of muscle and skeletal inactivitiy, but it helps with circulation and has allowed me to maintain a normal level of musculature.

For me pilates with machines works. I wear a heart rate monitor and keep in non-aerobic.

Best,
Sushi

 

I wonder if this is good news for the severely affected patients too? Since her "exercise" recommendations it seemed to me like Dr. Klimas is too out of touch with this patient group who needs help the most. Going forward, I hope each and every organisation and initiative will refuse to neglect the needs and characteristics those of us with severe disease have. This starts by offering home visits and home phlebotomist services and of course, although this has probably been discussed elsewhere at length, by making it absolutely clear that any level of "exercise" is extremely harmful to patients with severe M.E.

I imagine its difficult for practitioners to see patients who are bedbound - so she may not be seeing them - but I imagine Dr. Klimas sees every level of affliction up that. The way I read the program its built to not cause you to crash. With your kind of disability I imagine it could be difficult (and scary!) to find an 'exercise' (banish the word!) - maybe fitness program is a better word - since your energy levels are so low - that works. Of course it has to be non-aerobic.

Even though I'm fairly fit and go on walks frequently it helps for me to induce calm before 'exercise' because its such a worrisome area. I can get kind of aerobic - increased breath rate - just thinking about exercise

We certainly do need physicians and then at least nurse assistants or whatever to get to the severely ill patients. However it works out - good luck!

 

I've watched Klimas's exercise video and what she teaches is unlike any other instruction I've seen. There is no way to describe it in a few words or with a couple examples. And it should not be judged the same way generic exercise it. That said, I heard from one patient who had crashed as a result of a treadmill test at her clinic. I don't know if Klimas was administering it, but it is possible that there is not enough care taken in who should be given the test and who should not. But even with this, I would still consider going to her clinic, if I lived close enough.

 

I think it depends a lot on the person and then the life that person is leading. I feel the same as Nina, that there are some people who probably should not be doing this. In my case, for example, i'm quite functional mentally and also i can leave the house every day and travel ocasionally, if i plan it well. It was not always like that though. But when i go out, i go by car and don't walk around much. Also i don't carry around heavy objects, for example. It might well be that i'm deconditioned to some degree, but i know from experience that if i do more, physically, i will lose my mental capabilities to some degree and also the symptoms will get stronger. I can feel how the illness gets out of control then. I guess it depends a lot on how you define "exercise". Let's say somebody does not leave the house and does not have to do any sort of housework. Then, bottom line, it might be less physical activity, if that person did some stretching, moving around for a short time, compared to leaving the house, go shopping, do some work at home, etc. But i think the most important thing is that we understand that there is a broad spectrum of severity. I don't like the idea that some people feel forced to be more active or feel bad if they can't do (and are right about it) what is recommended and might be a good thing for others.

 

Just to be clear, by "severely affected" I am talking about people like myself (and I am still by far not at the most severe end) who are unable to leave their beds at all, often struggling to eat, talk, sometimes swallow or even breathe.
Even on forums like these I feel like this group does not get represented well enough, it's those patients we need to be extra careful of considering when giving out any recommendations on "exercise", "stretching", whatever you call it.
For me, even light stretching has disastrous consequences and will often leave me unable to brush my teeth, comb my hair or even eat. If they can do more, they will use this tiny bit of energy to do essential taks of living - and I'm not talking about doing the laundry.

I'm definitely not trying to rain on anyone's parade or speak ill of Dr. Klimas who I know has done a lot of good for this community, but I also feel like she has room for improvement in the way she educates the public about the consequences and importance of exercise. There are worse things than deconditioning and when you are severe, resting is *the* top priority that may not even be enough to stop a further decline. I didn't want to hijack this thread but felt it was important to point this out.

 

I think it depends a lot on the person and then the life that person is leading. I feel the same as Nina, that there are some people who probably should not be doing this. In my case, for example, i'm quite functional mentally and also i can leave the house every day and travel ocasionally, if i plan it well. It was not always like that though. But when i go out, i go by car and don't walk around much. Also i don't carry around heavy objects, for example. It might well be that i'm deconditioned to some degree, but i know from experience that if i do more, physically, i will lose my mental capabilities to some degree and also the symptoms will get stronger. I can feel how the illness gets out of control then. I guess it depends a lot on how you define "exercise". Let's say somebody does not leave the house and does not have to do any sort of housework. Then, bottom line, it might be less physical activity, if that person did some stretching, moving around for a short time, compared to leaving the house, go shopping, do some work at home, etc. But i think the most important thing is that we understand that there is a broad spectrum of severity. I don't like the idea that some people feel forced to be more active or feel bad if they can't do (and are right about it) what is recommended and might be a good thing for others.

I talked to Connie Soler at the conference and she said alot of people have to 'give up' activities in order for her program to work; ie they actually have to ramp back their other activities. If you're really ill you may not be able to do that - you could already be expending all your energy simply doing the day to day things you need to do to keep going.

 

Yes, now that you mention this, i remember that i have heard or read it before. Luckily i can do quite a bit more than only doing the things necessary to live, but that is because i organise everything in such a way that i'm using only the minimal possible energy on these things. I try to use all the energy i have for studying and work (both from home on my computer). Or then to go out, meet people, etc. I have organised everything in such a way that i can keep my mental capacity up as well as possible, rather than physical fitness (even though this probably is necessary for the former as well), because that's what i need to be able to get something done. It's not like i've always been that way, when i was healthy i liked sports and people said i'm lazy ;-)

 

It is a shame that the most ill with ME are not cared for well at all. We do need doctors to set up visits to homes and phlebotomy services. I can leave the house for a doctor's visit, but it must be in the late afternoon and it really wipes me out.

Those that cannot leave their bed are often left out completely.

 

Regarding klimas's advice for activity for the severely affected, I too can't relate to it. On klimas's exercise videos she says those who are bedridden could do a few reps with a tin of beans lying flat in their bed. Well, I was bedridden for 16 months at one time ( thankfully this is nothing compared to some people so count myself as lucky) and there is no way I could have even lifted a tin of beans even once. likewise, even stretching pushed me over my limits, so I think Nina makes some valid points.

I'm now housebound, can walk a few steps round the flat, and I still can't do even the lightest of weights, despite it being anaerobic activity and not aerobic. I've tried twice doing two reps, pathetic small amounts, and it was too much. So even though klimas has done so much for the m.e community and I am very grateful for her work, when it comes to activity advice for the severely affected, I think klimas's advice does not work for many of them as even the tiniest amount of activity is too much. The level of disability for the severe to very severe group is profound.

When I was moderate in my first few years of having m.e, I think Klimas's recommendation of doing some light exercise through the few minutes exercising, followed by the same amount of time lying flat and resting could have been useful and possible, but her activity advice for those who are bedridden certainly wouldn't have been possible for me and not even now at my current level of being housebound and managing to walk a few steps.

Nina, I'm sorry you are bedridden. Must be so unbelievably hard for you

 

Good on you, Nina, for making the effort to post when you have so little energy! Love your white cat, by the way. Yes, it's true you have to give up some other activity to exercise. And it's true also that nothing seems to shift our aerobic ability despite exercise.So what can you do at your level of illness? Perhaps we can think of exercise as any sort of activityeven cognitive or emotional. Maybe you already work with that to help yourself. Thinking back to your well self, maybe even remembering how you were can be an affirmation, a keeping of faith with your real self and living in hope of getting back to near that level of physicality.Thinking of you and wishing you all the best. Lynne

 

One of the problems with ME research is most of it is for mild (half former activity) to moderate (mostly housebound) patients, with only a few severe patients represented. Severe is counted as mostly bed bound. Very few studies have any very severe patients at all. Hence the advice is geared for the mild to moderate patients. So is much of the other reseach. To my knowledge the only study that ever looked at mostly severe patients was by KDM - it requires house visits by the researchers, not patients coming to the clinic. Bye, Alex

 

One of the problems with ME research is most of it is for mild (half former activity) to moderate (mostly housebound) patients, with only a few severe patients represented. Severe is counted as mostly bed bound. Very few studies have any very severe patients at all. Hence the advice is geared for the mild to moderate patients. So is much of the other reseach. To my knowledge the only study that ever looked at mostly severe patients was by KDM - it requires house visits by the researchers, not patients coming to the clinic. Bye, Alex

It's clearly an issue of funding. Having gone through a few research studies myself I've seen the expense required for people functional enough to get to the clinic. In many cases, researchers may not be able to put together a good enough study for what little money they have. In other cases, they may decide that the cost/benefit of a study with far fewer people isn't worth it.

I think everyone is interested in getting more information on those most seriously affected. I know from my personal experience that the MDs are always surprised that some of my lab tests are often worse than those bedbound. Certainly, there is a lot not understood.

 

Hi floydguy, indeed funding is a huge issue. Having to spend for at home phlebotomy or medical visits means greatly reducing the scope of the study, and the typical study is already too small and limited due to poor funding. However, I think that more researchers could have applied for larger grants if they specified they were looking at the extremely sick. I am not sure about that, but its possible. Bye, Alex

 

Hi floydguy, indeed funding is a huge issue. Having to spend for at home phlebotomy or medical visits means greatly reducing the scope of the study, and the typical study is already too small and limited due to poor funding. However, I think that more researchers could have applied for larger grants if they specified they were looking at the extremely sick. I am not sure about that, but its possible. Bye, Alex

The other thing that has surprised me a bit is that researchers seem to have a hard time finding patients for their studies. I have no idea how the recruitment process works but it seems like the usual suspects (ie Klimas, Light, Komaroff, Montoya, etc.) could assemble a list of screened patients that could be used for at least a part of any study being conducted. Perhaps selection must be more random but it seems to me that having a ready to go list of people who know the drill could cut down on expense and time.

 

The other thing that has surprised me a bit is that researchers seem to have a hard time finding patients for their studies. I have no idea how the recruitment process works but it seems like the usual suspects (ie Klimas, Light, Komaroff, Montoya, etc.) could assemble a list of screened patients that could be used for at least a part of any study being conducted. Perhaps selection must be more random but it seems to me that having a ready to go list of people who know the drill could cut down on expense and time.

Interesting you mentioned that. In a email exchange soon to be posted Dr. Klimas talked about setting up a clinical trials network. Kim McCleary of the CAA talked about the same thing in her CFSAC testimony. The CAA must have a good database of patients in their BioBank now and ditto with the WPI (in fact all ME/CFS specialists). Hopefully a clinical trials network will get set up..