Segment 1
The disease - what we know
Overlapping conditions
Physicians, psychologists
XMRV, CFS/ME, & You
Dr. Nanacy Klimas, M.D.
University of Miami, Miller School of Medicine
A 97 minute lecture with Q & A recorded Nov 2009
www.ME-CFSCommunity.com
www.CFSClinic.com
Segments:
1 Intro. Overlapping Conditions. Viruses
2 Viruses &CFS/ME. WPI & XMRV
3 XMRV. NK Cells. Latent & Retro Viruses
4 Retro Viruses. Biomarker
5 Antibodies. What We Don't Know. Cancer
6 Virus Life Cycle. Immune Modulation Drugs
7 What's Next In Research
8 Research Funding And Advocacy
9 Testing For XMRV. Q&A: Antibodies
10 Q&A: Drug Timeline. U of M Clinic & Studies
11 Q&A: Morton Fund. Taking Care Of Yourself
12 Q&A: Miami CFS Clinic
Marly C Silverman
Event Sponsor: P.A.N.D.O.R.A.
(
www.PandoraNet.info)
So, thank you so much for being here, and without any delay at all, I'd like to introduce Dr. Nancy Klimas.
Dr. Nancy Klimas
Thank You.
So what brings us here today is this new discovery that you all might have seen in the paper.
(skips)
Erm, let's. Can you just dim the lights down so that people can see that slide OK. That's great, super.
So let's just go ahead and get stared.
I'm starting with a little background stuff.
There's three parts to my talk, OK.
Part 1, a little background for those of you who that are sort of new to the world and don't realise all the work that's been going on.
Part 2, all about this virus and it's implications. Most of my talk's about that.
Part 3, is plenty of time for questions and answers, so there's going to be a lot of informal time. That's usually the best anyway, so if I get too long winded, you all can just tell me to stop.
(laughs)
I do get excited.
(Image of four faces shown, with text above:
CFS/ME and Viruses
Chronic Fatigue Syndrome)
Some of you might recognise this. This is the CFS faces project from the CFIDS Association, the CAA. It's a really neat thing they have that goes around the country and shows up in shopping malls. But the point of the faces project is that it's an invisible illness. The people that have this illness look fine, but they are not fine. And it's a very important message, because Chronic Fatigue Syndrome's a very debilitating condition.
And there's been research that looked at how severely ill people are with Chronic Fatigue Syndrome.
And it was the same, or worse than, congestive heart failure.
The same, or worse than, very late stage AIDS.
It's very impressive how very ill people are.
And of course, most of you all are living it, but some of you might not realise that the science bears that out.
It's been a hard illness to understand, because we had to diagnose it by symptoms only, OK.
But the symptoms are pretty impressive, and some things are special, to really help make the diagnosis.
One is the profound nature of the fatigue. It's not that 'Oh I'm tired to fatigue', it's the profoundly debilitating fatigue that prevents you from being able to do the normal things that people try do in their lives. And they defined that by saying, you cannot do at least one aspect of your life well.
If you're working, that's more or less all you're doing, you're not taking care of your family.
If you're trying to take care of your family, you probably aren't having any real social or recreational time, or work for that matter.
So it takes away the very big, and crucial ways that we define ourselves as people, and how we value our contribution.
But it's also defined by pain and inflammation. Muscle pain, joint pain, sore throat, tender lymph nodes, headaches, non-restorative sleep and most importantly, concentration and cognitive problems that can interfere with your ability to be as quick as you would like to be.
Slide shown during previous section:
Definition - CFS
>6mo. dibilitating fatigue, unexplained by preexisting illness or psychiatric co morbidity, and at least 4 of eight symptoms criteria:
post exertional relapse
concentration and cognitive complaints
myalgia
arthralgia
sore throat
painful lymph nodes
new headaches
unrefreshing sleep
There's also a clinical case definition. That was a research case definition.
The clinical case definition was more of a teaching thing, to try to teach doctors who use this that there is something underneath all of that.
That those are autonomic symptoms.
That those are immune symptoms.
That those are neuro-endocrine symptoms.
Then they cluster those symptoms around the type of underlying system that's acting badly to cause those symptoms.
This was a clinical case definition made by an international group in Canada, and I was a member of that group.
I wasn't a member of that first group.
I didn't name this disease. No one blame me.
I was not there. I was not invited.
Slide shown during previous section:
CFS/ME Clinical Case Definition
1 Substantial reduction in activity level due to new onset, persistent fatigue
2 Post exertional malaise
3 Sleep dysfunction
4 Pain - myalgia, headaches
5 Neurologic/Cognitive Manifestations
6 At least one symptom from 2 of the following:
Autonomic manifestations eg. OI, IBS
Neuroendocrine manifestations eg. temperature intolerance, weight change
Immune manifestations eg. tender lymph nodes, sore throat, flu-like symptoms
Link to full report www.iacfs.net
There are overlapping conditions.
About 60% of the people with Chronic Fatigue Syndrome also have Fibromyalgia.
Fibromyalgia is a painful condition, and that's what it is, it's a painful condition.
It's defined by pain. You poke people in eleven different places, sorry, eighteen different places
and if a lot of them, or more hurt, then they may meet the case definition.
Slide shown during previous section:
Other overlapping conditions
Fibromyalgia
Gulf War Syndrome (VA CSP 16 fold increased risk of CFS in Gulf War veterans)
Eisen et al Ann Int (?) Med 2005 7.142(11)??1
Multiple Chemical Sensitivity
(plus image of 'Classic 18 Tender Points')
But underneath that is a very complicated cause.
There's a pain ramp up that happens in the spinal cord and brain, sending more and more and more pain signals up to the pain centre, and even very light, non painful touch can be very, very painful.
Even.. you've heard people say, even my skin hurts.
Slide shown during previous section:
Fybromyalgia
Based on the 1990 ACR classification guidelines:
Historical feature = widespread (axial) pain of 3 months or more
Physical finding = pain in at least 3 of the 4 body segments + a finding of at least 11 tender points on digital palpation of 18 designated tender points
No exclusion criteria
(??? et al, 1994; Portenoy et al, 1996; Wall et al, 1994; Wolk (?) M, 2002)
(plus image of 'Classic 18 Tender Points')
Gulf War Illness is something near and dear to my heart, and I know Mac (? Matt?) cause we both do research in this area.
We have some Gulf War guys in the audience here.
Gulf War Illness can also meet the case definition for Chronic Fatigue Syndrome. They overlap, and much of our research in Miami is trying to decide if they are the same or not.
And if they are, you know, if the treatments might be the same.
That's one of the main focuses we have, and we have some really cool studies going on.
And I want the Gulf War guys to know, that I shipped off those boxes to the Whittemore Peterson Institute yesterday, so anyone who's in my Gulf War study, is having their XMRV serology and blood testing done very shortly. So I'll be getting back to you as soon as they tell me. So we'll know if it's truly overlapping in the same ways.
And then Multiple Chemical Sensitivity is an even more poorly understood, difficult illness, to have, and a difficult illness to diagnose
One of the issues with Chronic Fatigue Syndrome all along has been the attitude of physicians. And there have been a number of studies done (Lenny Jason (?) did one, this is a different one), that looked at the attitudes of doctors who don't even recognise the illness is real. And it works out about 50/50. And the doctors that do, generally have a family member who's ill.
Generally speaking their connection's not their speciality or their training or anything else, it's that they're linked personally to a person with the illness.
Slide shown during previous section:
Attitudes of Physicians
Of 811 GP's 44% did not feel confident making the diagnosis, 41% did not feel confident treating
More likely to have confidence if they had a friend or family member with CFS, having more patients with CFS.
Concludes that education emphasising acceptance of CFS as a real entity results in improved confidence in treatment
(Couldn't read source, ended (April 1))
So, what about viruses?
We found most of the work that's been done on Chronic Fatigue Syndrome has been on mental illness, and depression, and atypical depression. And the patients have gotten a bad rap.
And I'm gonna say this in sort of in a funny way.
This is my own personal opinion, that part of the reason that there's so much psychology work done is that this is a very interesting illness from the psychologist's point of view. As is any really serious chronic illness.
Patients with HIV have a huge mental health literature.
Patients with renal disease, or renal failure, have a huge mental health literature.
Because one thing you can really do for people with a chronic disease, is try to help them live with it, cope with it better, and try to have the best quality of life that is reasonable.
And so, most of that mental health literature is actually focused on that.
All that Cognitive Behavioural Therapy work and so on is focused on that.
I think where Chronic Fatigue patients got really angry, and I totally understand, is when some researchers went off on the tangent that this is some atypical form of some primary mental condition.
And I think we disproved that in 1993 or 4. I mean it was a long, long time ago that all those endocrine studies came out that showed that basically the illness goes in the opposite direction from all the neuro-endocrine point of view, than depression or that sort of thing.
But still, there's been this cloud lying over folks with this illness because we never came up with a very clear understanding of what the primary cause might be.
And much of the excitement about this virus, is that it is itself a candidate for being a primary cause.
So it's a very exciting time.
Slide shown during previous section:
Viruses and CFS/ME
Much of the research here and internationally has examined the role of the immune system and possible chronic infection in CFS
The viruses studied all have several things in common:
they infect cell of the immune system and the neurologic system;
they are capable of causing latent infects;
they can reactivate under certain conditions
