The Absent-Minded Professor

Hi everyone,

Tonight, Prof. Klimas will appear on the CBS Evening News to speak about a new study showing Spinal Cord inflammation in ME which is great. We need more studies showing encephalitis and myelitis in order to get people to call our disease ME rather than "CFS."

As Klimas is in the news these days I am concerned that she will continue to promote GET and the very harmful version of CBT studied in the PACE trial. I think its really important for us to address why she does this and why she sometimes calls our disease "chronic fatigue." These things are very harmful and she obviously knows a lot better.

Prof. Klimas didn't do that much better than CAA in her press comments on the PACE trial. She did mention working within the energy envelope. But, like McCleary she agreed with Peter White that (the evil version of) CBT and GET studied were moderately beneficial.

http://health.usnews.com/health-new...-help-fight-chronic-fatigue-syndrome?PageNr=1

emphasis added

White noted that all the treatments were equally safe, and serious reactions were rare.

"Patients now have a choice of two moderately effective and safe treatments that can help them towards a healthier life," he said.

Dr. Nancy Klimas, chief medical officer at the Chronic Fatigue Center at the University of Miami Miller School of Medicine, noted that the merits of various therapeutic approaches to chronic fatigue syndrome are still a matter of debate.

"But here Dr. White is saying that cognitive behavioral therapy and graded exercise are moderately helpful, but not curative," she said. "And I would agree with that."

"On the other hand, it's also important to note that when we talk about helping patients increase their activity levels, we're talking about people who have very limited amounts of energy," Klimas added. "And you have to work within this 'energy envelope,' because if you push beyond the threshold they will relapse. So often, what we're talking about is about five minutes of exercise before taking a rest."


"In any case, I look at this as a first step," she said, "and anticipate more effective therapies, based on a better understanding of the biology of the illness, in the future."

http://www.medicinenet.com/script/main/art.asp?articlekey=126110

emphasis added

CBT, Exercise Part of CFS Treatment

Nancy G. Klimas, MD, professor of medicine, microbiology, and immunology and director of the Chronic Fatigue Syndrome Research Center at the University of Miami Miller School of Medicine, says that CBT and exercise can be an important part of the treatment for CFS but should not be looked at as a cure-all.

"If this helps them a little, that's great, and if we can find something that gets at the underpinnings of the illness itself, that's great as well," she says.


In the U.K., where the study was conducted, CBT and exercise are both recommended in national treatment guidelines, and are all that are offered to people with CFS there, she says.

"If you come to see me for CFS, I can give you CBT and exercise, but that is not my primary focus," Klimas says. "I will look at your sleep disorders, check your immune function, and look for and treat active infections that are treatable."

There is a reason people are extremely mad at McCleary for saying these type of things: they are not true and they really harm us. This study will probably result in a lot of iatrogenic morbidity and mortality.

GET and the evil version of CBT are clearly harmful, NOT BENEFICIAL for ME ("CFS"). This MUST be stated unequivically. These are the usual lies from White and Sharpe. It is just as unacceptable for her to back up their lies as it is for CAA to do so.

This version of CBT is the one where the patients are told they have no physical illness and that they have a phobia of movement and that the only proven treatment for ME is to get over this fear of movement and constantly ratchet up their exercise. This is the exact opposite of an effective, safe and ethical treatment. It must be strongly opposed.


(2) Is she still calling ME not just "CFS", but sometimes "chronic fatigue." I've seen her do this more than once in talks and at CFSAC.

The big logo on her private clinic says "Chronic Fatigue Center." It is subtitled in small font "Research and Treatment for Neuro-Immune Disorders." At the bottom of the page, the address info lists the "Chronic Fatigue & Immune Disorders Research and Treatment Center." The small print text is nice, but we all know too well it's the titles and headlines that stick in peoples' minds.

I know it's easier to say 'chronic fatigue' than to leave on the 'syndrome'. OK so just say "CFS" at the very least. It's very easy to say. ideally I'd like to hear her call it "ME."

What really distresses me is (a) not only are these things she says destructive, but (b) she obviously knows better. This makes me ask (i) if she already knows what she is saying is wrong, why does she still say it and (ii) how are we going to ever influence her to change what she says if she already knows it's wrong and says it anyway? She goes out of her way to help us with speaking, volunteer and media appearances and then says some things that are obviously wrong and very harmful. This seems to me to go well beyond absent-minded professor behavior.

What is going on? Am I missing something??

Comments

I will give my personal thoughts (and I could be completely wrong). After watching the 2010 Invest In ME Conference, there is no doubt in my mind that she really cares about CFS/ME patients and really believes this is an organic illness. She came across as on our side.

Most people out there have no idea what it's like to suffer from this disease. That includes family and friends and I think it even includes Prof. Klimas to some extent. Yes she cares about patients and wants to do good biomedical research, but she will never quite know what it's like to suffer - how desperate we are. That means that people who represent us often don't get it quite right. She lives in the world of academia, where you might argue she has to refrain from being too outspoken in order to survive. Or at least that is the way scientists tend to be. Again it's because they don't really understand the full horrors of the disease.

Secondly, we spend every day keeping ourselves up to date on all of the latest advocacy and devote a lot of time thinking about what is right and what is wrong. Prof. Klimas is healthy and has a family and a career to think about as well as her research and so she isn't always going to be on the ball when it comes to advocacy. We could argue she should be, but does she really have enough time to do everything a healthy person does and understand what needs to be done politically?

So I think her heart is in the right place but due to being a "civilian" she can be prone to putting her foot in it. Like I said I could be wrong...
 
Dr Klimas is my doctor. Recently, I went over to Miami for disability testing. With my concerns abot my appeal, she sent me her resume, 30 pages of it. She has served our community for over 25 years. She is not doing it for the money, if she did, she'd practice allergy and general immunology, and would have much more time with her family than now. She has been president of IACFSME and served many years on CFSAC.She has opened a new clinic over a year ago to see more patients. She speaks many time a year, recently on a very busy schedule in Australia and NewZealand.

I don't get the disrespect people have towards her. Please note that more than often words from interviewees get misinterpreted by journalists. Give her the benefit of the doubt. She has much to offer to our community.
Dr Klimas is 100% on our side,
 
I have heard many CFS doctors/researchers call it "chronic fatigue" when speaking. It is not at all uncommon. I think they do it b/c saying Chronic Fatigue Syndrome over and over gets tedious and cumbersome. Give her a break.
 
Cigana and Kati,

I know she's on our side. I have said quite a few times elsewhere that I think she is a hero and that overall, including mistakes, she has done an incredible amount for us. It would have been easier for her to have stayed on the AIDS research gravy train, but she gave that up to do ME work. She also doesn't have to go out of her way to do education and media appearances, but she does, to help us. Also she's a researcher and nih is biased so you can't speak the full truth and still get ME grants.

Good point about not having the disease makes it hard to relate. I am just curious why she makes these serious gaffs over and over. she knows better and we tell her. it really seems like more than just a case of the absent-minded professor.

additionally, she is into exercise and i really don't understand this. deconditioning is not a significant issue and the danger of PEM is so grave, it seems ridiculous that she has her patients do this. And i'm not talking about stretching and range of motion- those are very helpful.

why?? and how can we influence her to improve??
 
sensing progress;bt4386 said:
I have heard many CFS doctors/researchers call it "chronic fatigue" when speaking. It is not at all uncommon. I think they do it b/c saying Chronic Fatigue Syndrome over and over gets tedious and cumbersome. Give her a break.
Just say ME or at the very least "CFS". those are not hard to say! People say ALS or MS not Multiple because it's too hard to say Multiple Sclerosis. Saying CF does so much harm, i really can't accept that excuse at all.
 
I too have high regard for Dr. Klimas- her work, dedication, and willingness to expand her practice recently. And I think that CIGANA has it right...whether you are talking Dr. Lapp, Dr. Peterson, Dr. Bateman, or the rest who are and have been working at this for decades, these Doctors do not have time or staff to do the research and stay plugged into all the dynamics of the disease or the advocacy movement that we do. As a result, like many academicians, they can be cutting-edge in certain areas of specialty, and yet woefully "behind" in others.
But the bottom line for me is the nomenclature issue. Whether in an interview, or on her door, this idea that in 2011 a specialist M.D. is still calling it "chronic fatigue" is just not tenable to me. I will offer to pay for the sign change on her door. But the patient community has to gently, even lovingly, insist that she stop that. As many have noted before, it is as insulting as saying to an M.S. patient "you have chronic stumbling, stuttering and falling down syndrome."
We really ought to have an approach to this phrase that is similar to that which millions of us former hippies have agreed to do when it comes to John Lennon's murderer. We simply refuse to even say his name. Yoko Ono asked us to respect John in that way, and for the past 20 years, neither I, nor my wife, nor my daughter, nor any of my music friends have EVER said his name.
Anybody with me?
 
I am also a patient of Dr. Klimas. My personal opinion is that she is a bit careless in what she says and writes. In regards to exercise, I would like to point out that it's possible not everyone is in the same boat. I had PEM and awful fatigue when first diagnosed (Komaroff) but am able to exercise without much difficulty at this point. I have awful neurological and immunological issues. Fatigue is definitely not primary for me. And I would add that if you can get to the point of moderate exercise other symptoms will improve or go away (ie body pain for me). So if Klimas has other patients like me I can easily see why she brings this up.
 
Kelvin- I am with you brother.

Floyd- On the one hand people say (and I think CCC says) that PEM is the sine qua non of ME and other mitochondrial diseases. Since other mito diseases are rare, and other fatiguing illnesses don't cause serious PEM, that this is the way to really diagnose an ME case. Some fibro can improve with exercise. I'm trying to sort all this out in my mind, so bear with me.

So would you say you really probably have:
(1) fibro, or
(2) an atypical ME or
(3) somewhere in between ME and Fibro or
(4) you had ME but the treatments you did 'cured' the PEM and you're still working on the rest (in remission from ME) or
(5) ME, no asterisk needed because PEM isn't really a requirement or central feature of ME?
 
Quite agree with all asking for the correct definition for ME which includes the 3 basic elements. CFS - chronic fatigue just doesn't describe the "fatigue" of ME anyway.
 
Justin -

I would not ever be part of a study but it's hard to believe I don't fit in to a category of CFS. No Fibro as there are not tender spots. I think it's likely that I had CFS but have been able to recover partially. Personally, I think when this whole thing is defined with more certainty PEM won't be the primary marker. Of course I am biased but I would think it would be better to take the focus on anything revolving around being tired or containing the word malaise - sounds like malingering to me.

Not that I want this label at all but Komaroff and Klimas keep the CFS label on me. If they can't diagnose it then who can?
 

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