RESEARCH

Dr. Klimas's Lecture on XMRV Presented By PANDORA and the CFSKnowledgeCenter (Nov 2009) 

Congratulations to PANDORA for sponsoring Dr. Klimas' scintillating lecture and Dan Moricoli and the CFSKnowledgeCenter for editing and getting the video's online.

Check out the Original Video's Here

Transcriptions were all made by chronic fatigue syndrome (ME/CFS) patients from the Phoenix Rising Forums and may not accurately reflect Dr. Klimas' Lecture. Photos and Headings supplied by Cort

What happens next is very clear - research. Dirty word but the most important word in the whole game. Gotta know that research has to happen and it is the research that gives us effective therapy.

I started HIV in 1983, is when I finished my residency. And so I started right here at the University of Miami and I started right in the HIV program before we knew the name of that bug. And in 1984, the bug was named, and in 1988 the first anti-viral was tried, it was a little bit helpful but it wasn’t all that effective. In 1994 we had three drug combinations that just kicked butt. In the time between 1983 and 1994 I lost 1000 patients. It was devastating, I was emotionally a wreck every time I went to clinic. And now I am going over to my HIV clinic at the VA and I am taking care of blood pressure, I am taking care of hypertension and cholesterol and the usual stuff. And you know, HIV sometimes does it’s dirty deed which is to say to make people a little more prone to cancer, sometimes we get some cancers, but most of my HIV guys are really healthy.

I got into a little trouble.. for saying this...I said my HIV guys are hale and hardy and my Chronic Fatigue patients are not...And that’s true

I got into a little trouble in the New York Times for saying this, did anyone see me in that Times? I said my HIV guys are hale and hardy and my Chronic Fatigue patients are not, they are not. And that’s true, but I am very privileged to have been a doctor caring for all those people and then being there when the time happened when these things changed. You know, there I was an HIV doctor, dying patients, going to funerals, and taking my patients, doing rounds of hospice on my way to rounds on the regular wards and then I was there and in a matter of a few months I had patients that went from 80 pounds to 180 pounds.

And I got guys that I take care of now and I remember them from when they were 80 pounds. I have one guy that played basketball six hours a day, he’s the most muscle bound handsome guy you ever saw and he was nothing but bones and that’s because I stuck it out and I feel really privileged that I got to be their doctor and see them all the way through but that’s how I feel about Chronic Fatigue Syndrome right now. I mean, I’ve paid my dues. You guys have certainly

In the time between 1983 and 1994 I lost 1000 (HIV) patients...I have one guy that played basketball six hours a day, he’s the most muscle bound handsome guy you ever saw and he was nothing but bones

paid worse dues than I’ve had to pay on this. But I’ve paid my dues, I’ve had the privilege of being your doctor and watching you bear through all of this.

And I really think we’re at this point now where I am going to get to be there during this wonderful transition from really sick to hale and hearty and that’s what I am really looking forward to. So we’re going to do that, right? (applause!). 

What’s Next With Research? 

And the research is going to be a lot of different kinds of research. We’re going to have to do basic science research to understand this virus.

The first step is just to validate that study that was October 8th in Science which is already going on, but there are probably ten other studies going on. Now I am going to do that too. To see how far it extends. Is it in Gulf War Illness? Is it in Fibromyalgia? Is it in autism? That’s a really interesting question. I mean for my nephew’s sake, I really hope it’s true. And so on. There are some real possibilities here. This virus has been a sneaky virus messing people up in more than one way for a while, or it might just be a Chronic Fatigue/ME virus.

The next step is in culture - what drugs work? What drugs that we already have that we can quickly roll out in clinical trials work? Meanwhile, in the back, what other drugs are on the shelf that might be even better than the one that are already out there for HIV? And we’ll be able to do those phase one and phase two trials very quickly. They could happen very, very quickly. There’s a lot of motivation here. You guys are sick but there’s also one million of you, you’re a hell of a market. And that’s just the United States.

There’s a lot of motivation here. You guys are sick but there’s also one million of you, you’re a hell of a market. And that’s just the United States.

So if we have a biomarker that we can diagnose with, which is a huge step forward and we have a treatment, a potential treatment, then I think you’ll have the attention of Burroughs-Wellcome, and Roch and Abbott and all the companies that have anti-retrovirals as their primary deal. The immuno-modulators, don’t leave us immunologists out of the big push forward. I think immuno-modulators may well have a role. 

Sub-grouping patients by different things, could be, here’s a big make believe, but what if it is autism? What if you get a virus in your head when you’re 18 months old? What if you activate a virus that was in your genome, vertical transmission when your 18 months old, 12 months old, and what’s vulnerable at that moment in your life is your brain. So, there’s a lot of work to do down that line.

Then there’s phase one, two, three trials; the subgroups; co-infection work; and then finally, basically, what’s our long term plan? How are we going to treat people at different stages of this illness for how long, with what, and so on? 

But hey, we can have some marching orders here. These are things we know how to do. We’re good at this. This is what’s so much fun is that so many people know how to do this kind of work. They’re going to be excited to get into it. So Phase One are those little small trials where we just try it out, there’s no placebo. It’s mostly a safety study but also an efficacy study. Phase Two is the next step when you do a bigger study, usually 30-50 people in each arm and there’s a placebo involved. 

Phase Three is when you saw Phase Two looked pretty good so you go for it and you get a lot of money together and you do studies on 400 to 500 people in each arm.

An 'Orphan' Disease  - We have one other little advantage right now, and I hope it will hold up but right now the FDA perceives Chronic Fatigue Syndrome as an Orphan Disease, an Orphan Drug Disease. That’s partly (determined) by how many people have it and they’re saying because less than 200,000 people have been identified with it, and that’s true, only 15% of patients have been diagnosed, that we will fit under the Orphan Drug Guidelines, which lets things move a little bit faster, you can get things out to market without quite as many steps. That would be good.

This is just one kind of design I threw up here just to show you what people would think about. I thought this one up and no one’s going to believe me but I think it’s a great idea which would be an anti-(retro)viral (Group A) on the top; an anti-(retro)viral with an anti herpes family drug on the middle (Group C); just the anti-herpes viral drug on another arm (Group B); and then a placebo on the fourth (Group D). So you’d actually do four arms at once and answer all the questions in one fell swoop.

A New Herpes Drug?  - here’s a neat anti-herpes family anti-viral that is in a phase three trial that’s very low toxicity that a company has in California. They just presented at the infectious disease meeting, their infectious mononucleosis data and it was really good. So it might be a drug that’s less toxic than the one we already have (from audience – What drug is it?). It doesn’t have a name yet, it’s still all numbers. I’ll tell you about it. It’s exciting. So we’ll see. There’s all kinds of things to think about.

How fast it happens all depends on the money. It always about the money.

So what is that going to take? It's going to take basic scientists and clinical scientists that are working together doing the in vitro work. Funding. Interested companies that want to do the big clinical trials. And ultimately, an NIH clinical trials group to work together to make it happen. 

How fast it happens all depends on the money. It always about the money.

(thanks to ComebackShane for transcribing this)

Section 8: Research Funding and Advocacy

Slide – The Importance of Philanthropy

• This huge finding was funded primarily through private donations
• Private donations give the investigator the flexibility to jump on a finding this important, and not wait the 12 to 18 months required for NIH grant preparation, submission, review and funding (Though, believe me that this is happening too!)

When you get down to it, the reason why this happened this fast is the Whittemore’s put their own money into it. They didn’t go through the NIH.I’ve been to their fundraisers, They put on these glorious fundraisers, they can raise a million dollars in an evening. It’s amazing. And they raised enough money and put some people together and in two years they did this work, they didn’t have to wait for a review process and wait for the cycle, cycle, cycle.

Right now if I wrote a grant today to do this it would be submitted in January, it would be reviewed in March, it would go to council in July, it would be funded in September and I would get to start a year from now. So private money sometimes is the best money, particularly when you’re on the edge of something really, really big like this. 

So certainly, one of the biggest things that going to happen right now is fund raising, it is going to be private foundation type fund raising. It’s terribly important. In addition to doing the stuff we’re going to do with the NIH and all of the other funding from federal agencies that do this kind of thing. It’s going to be everybody working together.

So, philanthropy is really important. And I put this slide up, not just for the people in the room but because we’re putting this video on the web and I am hoping it’s going to reach a lot of voices.

Slide – Importance of Philanthropy

• If you were waiting to donate, now is the time – the difference could be the difference of years until effective therapy strategies are worked out and in place. Consider
• The University of Miami Morton Fund - in memory of David Morton who died as a result of CFS
  In the Gift Designation section of the University of Miami's online form, in the “Other” box at the bottom of the form, type in: “Morton Fund for CFS Research”. (Complete the rest of the form as instructed.) 
   
  For gifts by check: Make the check payable to the University of Miami, AND include in the memo section “Morton Fund for CFS Research.”  Mail to the following address (the P.O. Box given online will also work, but the street address is a bit faster): 
   
  University of Miami 
  Office of Medical Development 
  Attn: Elizabeth Goldberg 
  1500 NW 12 Avenue – JMT Suite 1020E 
  Miami, FL 33136. 
   
  A gift can be made "in honor" of another person. The University needs the name and address of the honoree in order to send an acknowledgment to him/her.  
   
  Elizabeth Goldberg, the Director of Development who handles gifts for Dr. Klimas’s research, can answer any questions about making a gift. Her email is egoldberg@med.miami.edu 
  
• The IACFS/ME Research Fund
• The Whittemore-Peterson Institute
• The CFIDS Association of America Research Fund
• The ME/CFS Pocket Money Research Fund

• Office of Congressionally Mandated Research

  Contacts: Congressionally Directed Medical Research Programs

  E-mail: cdmrp.pa@amedd.army.mil 
  ATTN: MCMR-CD 
  1077 Patchel Street 
  Fort Detrick, MD 21702-5024 
  Phone: (301) 619-7071  
  Fax: (301) 619-7796

  Questions Concerning Consumer Involvement:

  E-Mail: cdmrpconsumers@amedd.army.mil 
  ATTN: MCMR-CD 
  1077 Patchel Street 
  Fort Detrick, MD 21702-5024 
  Phone: (301)-619-7071 
  Fax: (301)-619-7796

This is the time to be philanthropic in this disease. This is your moment. This is the time your dollar makes the biggest possible difference. Hear me say that never has there been a more critical time to invest your philanthropic dollar in this disease. We wouldn’t want to you to take away from some other diseases but do it anyway. Jump Ship. Come on over because we really need this money right now to do this incredibly important work. 

And we are doing the other important work that it takes to get grants through the more traditional avenues but that will take time. And time that you guys are out of. You are ready for this to happen. I know you are. Everyone is begging me for the next step and we don’t have it because we need to do the science.

So what kinds of places might you put your money?

Well, I’m going to make a pitch for University of Miami right here and the Morton Fund Beth Goldberg who put all of this together with the help of Pandora and Dan Moricoli. We have a fund called the Morton Fund, it’s named after a young man that died of Chronic Fatigue related complications some years back and has been my main research donation tool here at the University of Miami.

There’s also the Whittemore-Peterson Institute; the CFIDS Association has an excellent donation account; the IACFS/ME which is the professional group that I was president of not very long ago. And then Dan just put together this pocket fund web-site. A lot of different ways you could give where it would make a difference. But do think about that.

I didn’t put on the international links. I meant to do a little research before I did this but because this is videoed and it will be international I would ask people internationally to think about their own foundations, 

I know New Zealand has a terrific group, the ANZMES group. Excellent groups in England and Ireland; ME Trust and others. Barcelona has a fabulous group. There are a lot of different places where one can put their donation dollars and make a big difference. And it would be a really good year to make that your plan.


Slide – The Importance of Advocacy

• No better time than now to let your government (know) that 20 years of trivializing this devastating illness has stopped and it is payback time.
• Demand clinical trials
• Demand serious research funding, set aside dollars big enough to deal with an illness that has hurt 1 million Americans
• Demand private disability companies retract the mental illness decisions and payback your lost income

In addition to fund raising, now is an awful good moment for you advocates. This is a good time and you are all advocates for your own illness. No better time than now because you have a passionate story. You’ve spent 20 years with an illness that’s been basically “blown off” (Audience – 30!). A Long time. So, you know you are standing in a position where people should feel a little embarrassed, you know a lot embarrassed, a whole lot embarrassed. Your government should feel like they have a true obligation.

You’ve spent 20 years with an illness that’s been basically “blown off” ....So, you know ... people (in the govt.) should feel a lot embarrassed, a whole lot embarrassed. Your government should feel like they have a true obligation.

I will say that at that CFSAC meeting last Thursday and Friday we were getting, people were hearing us. I think we were really being heard. And certainly, take that all the way; push it; go to your congress people, OK. You can only push the NIH, they have their budget and they are told to do every – they have one pot and everybody wants it and they really can’t be told to spend it this way or that, they end up having to divvy up one way. 

You go to Congress, they can actually put aside money and there is one really important tool they have. There is something called the Office of Congressionally Mandated Research. This is an Army office. It comes out of the DOD budget, a very healthy budget one might say. The Office of Congressionally Mandated Research and that is absolutely the place where advocacy can put real committed dollars to an illness.

In fact my research right now is funded through the DOD, Gulf War Illness, through the Office of Congressionally Mandated Research. They are wonderful people, they are very professional, they know how to do peer review properly, they know how to get money into the hands of people who will really spent it in a… and boy do they watch how you spend it. The Army - I’ve never had so much oversight in my budget in my life. 

So, sitting in your seat – Are you excited? Yeah, you should be! It is damn exciting! This is great! This is the good stuff; this is what you’ve been waiting for (lots of applause – around the world!). I mean really – Yea!

(Thanks to 'ComeBackShane' from the Phoenix Rising Forums for transcribing this )

View the video at CFSKnowledgeCenter here

Section 9: Testing for XMRV: Q&A

Ordering A Blood Test?   - So, there are some issues here. That blood test only identified 67% so if I ordered a blood test on you right now and it was negative, what would happen to your soul? You know, and yet it might not really be negative, in fact it’s got a one chance in three of being wrong. The blood test that we don’t have yet that we will have very shortly, those tests are going to be improved on.

When the first HIV blood test came out it wasn’t any good either. You know, it went through stages and stages and stages before we got a really good one. Don’t rush to get the test. Why, because you’re not going to act on that test quite yet. The knowledge of being positive is not going to give you an anti viral prescription from anyone right now because we don’t know which one to give and if it’s safe or if it’s toxic. The HIV drugs are not been gentle, OK, and you guys are really tender. So, if you knew your status today it really wouldn’t change anything.

if I ordered a blood test on you right now and it was negative, what would happen to your soul?....yet it might not really be negative..(the) tests are going to be improved on

If they are right 99% of you are positive. And if they are wrong then 95% of you are positive.

So when? Soon, really soon. But you wouldn’t be able to bear the false negative right now so be careful OK. There are kits already out there, they want cash and there’s no reimbursement from your insurance provider yet. I was talking to this great scientist at the VA and he said, you know, my lab develops tests. That’s what we do. What’s wrong with the tests you got? Oh, I could fix that and he got all jazzed and I’m thinking, damn, get another guy in the field and you know, and he’s fixed your test, that’s great. So these people, they’re already out there and they know how to do it and tests will improve.

If you don’t have this virus – what if you didn’t. Well, you know, that’s good news too because that puts you in a different group and we know not to do all that toxic stuff to you. So that’s an important thing to do too. So don’t be discouraged even if you’re negative. 

Don’t rush to get the test. Why.. The knowledge of being positive is not going to give you an anti viral prescription from anyone right now... The HIV drugs are not been gentle, OK, and you guys are really tender.

We talked about these other people that might also actually be infected. We don’t know. These are just people we are going to be looking at. The Gulf War Illness group I’m desperate to see right away because it could change the whole direction of that work and they have a fair amount of money to do that work. 

So the conclusion, it really is a big thing. It’s a big thing. You should be very excited. It’s a very hopeful thing. Yeah, the research is already underway, more to come. The more we can get funded the more focused and intense we will be in getting this work done as quickly as possible. That work we were already doing plays right into this. All the genomics work and all the immunology work. That is all critical to the better understanding of this illness and how this virus plays into it. 

it really is a big thing. It’s a big thing. You should be very excited. It’s a very hopeful thing.

Those of you that are in my good day bad day study, it’s nice because we’ve got your stuff already in the freezer and we’ll be looking at this virus as quickly as we can get access to the assay. That study, that’s a really important study. It looks at people in relatively better times and worse times and we’ll know if viral load is causing that. If there’s anything about this virus. We’re already looking at all the immune parameters and endocrine parameters and everything under sun. But we’re trying to understand what mediates relapse. 

There are people in this room that have been in my genomics study where we put people on a bike and made them sick on purpose and then watched why they got sick. That was a heroic thing to do, we appreciate it, we’ve learned a tremendous amount from that study. We want to continue doing that study. We’re fundraising to do the last of the chronic fatigue group. We’re going to run 15 more chronic fatigue patients and then we ran out of money. I’m looking to finish that study. You can be sure we’ll look at viral expression now that we know that we should be looking for viral expression. 

So, all these thing are important. They all tie together,

If any of you guys know someone that’s too sick to get out of the house and so discouraged that they look like they are going to give up , make them feel optimistic. That’s your job.

You can make a difference. You can make a difference by volunteering for studies, you can make a difference by spreading this word. If any of you guys know someone that’s too sick to get out of the house and so discouraged that they look like they are going to give up , make them feel optimistic. That’s your job. OK, this is not a good time to give up. And then finally be charitable and find charitable people to help you with that. Give, we need funds, we really do. 


I’m going to stop my official talk and take questions and answers. 

(Question from the audience) Over time as you discover and find the blood tests to test your patients and then you find that patients who’ve done better over time actually do have the virus. What does it mean for those types of patients?

(Answer) Patients who are recovering despite having the infection. Well, I can tell you what I would anticipate – that their immune systems are recovering. I would anticipate that people who could control their viral infection will do better. So, what you’ll hear in people’s histories very frequently, that have had this illness for a long time and had long, long, long periods of recovery, is that they tend to only get ill again if they are recovering, during times when they have a massive infection of some sort or some big immune event. 

Now I’ve had it flip the other way. I’ve had more than one patient who were just very ill and just cruising on very ill and they got something terrible like a pneumonia that put them in the hospital with a high fever and huge immune

If you look at their immune systems, they are better because their immune system is better. And that has clinically been my experience. The natural killer cells are behaving better, their immune activation is less and activation drives the virus.

response and when they came out of it they were much better from their chronic fatigue. It’s like getting their immune system so… maybe it was the fever, maybe it was the immune system response, maybe with all the cytokines but sometimes you’ll see the flip of that. 

But I think that people that are remit, relapse, remit, relapse - most of you guys know your pattern. Most of you guys relapse because you do too much and you crash. You’re all crashers. Because you don’t know when you are feeling well to stop acting like you are 100% because when you are feeling well you are not 100%. But, that’s a little different. That’s your body being out of balance and you don’t have the reserves of a normal person, you literally use them up and you crash. 

The best question is the flip. If people are getting better over time, why are they better? If you look at their immune systems, they are better because their immune system is better. And that has clinically been my experience. The natural killer cells are behaving better, their immune activation is less and activation drives the virus.

(Thanks to Fds66 for transcribing this. )

View the Video presentation at CFSKnowledgeCenter here.

Section 10: Question and Answer

Question: If you were going to guess on a timetable for, number one, for the test, when they would have a good test? And, number two, when you would think they’re going to have a drug that’s going to help the symptoms? If you were going to guess right now, what do you think the timetable is?

Nancy Klimas: Well, number one is easy, I think number one will come very quickly. 

Question: I think six months…

Nancy Klimas: Yeah, I think six months is possible.

Question: What about drug therapy/treatment?

Nancy Klimas: How fast could you do a Phase I, a Phase II and a Phase III? And, if we’re considered “orphan”, which is the big if, Phase II's can, in the “orphan” world, be something called “a II slash III” [a II/III]. You can start it as a small study and, if it’s looking good, you can just roll it right on into the Phase III. You can keep on going. And, the FDA typically requires two Phase III studies for a drug approval - two years, three years? It could be very quick.

Question: When I fly from north to south, it seems that I really crash afterwards, I find it really hard to recover from that.

Nancy Klimas: You guys are about a litre short in blood volume, ok? If I’m sitting at five litres, you’re sitting at four. So, you’re really, really sensitive to blood volume changes. If you’re a little dry, you crash. You’ve got to hydrate so aggressively when you’re in dry areas.

Question: Unfortunately, I’m not one of your patients. I’ve tried for many years to get in but…

Nancy Klimas: This tells you how terrible this is: I have a 350 patient waiting list. Ok, and there’s no place else. And, I can’t practice… I mean, there’s no way to do it all. That’s why, with the help of Hanna, we were putting together this clinic. A model clinic open in Kendal – we’re going to have our opening in December. But the point of it is…

Question: Can I ask something else?

Nancy Klimas: Yeah, sure.

Question: Some of us may not be able to afford the clinic. That’s a concern for me.

Nancy Klimas: Right, that’s why we’re growing the University of Miami clinic at the same time. I’ll just say, I wish I could solve this problem for everybody. But, at the University of Miami we have very generous patients who donated a salary line for a physician to do nothing but Chronic Fatigue Syndrome. Which is amazing! It’s taken us a little while but we have the doctor hired. She’s going to start in January and we will more than quadruple the volume of our clinic here at the University of Miami which takes all insurance.

Question: How can we get into research…

Nancy Klimas: Oh, you don’t need to be a patient to be in a study. Studies are for everybody and you don’t pay to be in a study, in fact, often the study pays for you.

Let me talk about research for a moment. This tele-health study is a really cool study. It’s the brainchild of years and years of research where we found that Cognitive Behavioural Therapy can really help people take control of their lives. The first studies we did were group therapy here and you had to get here and some of our patients were too sick to get here. And, we didn’t know whether or not we could generalize and say: Yeah, it’s great for everybody. So, we designed this other study and, at home, you take the group on the phone, it’s a tele-health - they give you this phone and fix you up with a group and there’s a Cognitive Behavioural Therapy group on the phone. It’s very neat.

We also have the “Good Day/Bad Day” study I referred to before. I don’t know who’s here from my group besides Mack, here. We still have room for, I think, 70 more patients in that study – lots of room. That’s a neat study because we’re trying to develop bio-markers and we see people four times and we do these very expensive and comprehensive evaluations with all kinds of immune and other kinds of lab tests - they’re all yours, free, they pay you $20 to come. 

We have the Gulf War Illness study that has a Chronic Fatigue Syndrome group. And, that is a genomic study.

So, the point of our group here at the University of Miami has always been to advance the science. To advance the science, we have to have study subjects and, frankly, my original reason why I had a clinic was so that somebody was taking care of people so that I could recruit my studies. But, then I got sucked in by you all and I love being your doctor.

(Thanks to Koan for transcribing this)

View the Original Video at CFSKnowledgeCenter here

Segment 11: Question and Answer - cont.

Taking care of yourself

(Question from audience) What is going to give us most bang for our buck right now. If we’ve got $50…

(Answer) Morton Fund, darling. No seriously, Morton Fund really, really needs your money. We’re down to the last dollar. The reason why were able to do the genomic study is because of the Morton Fund. I was only allowed to do it on the Gulf War patients and I was able to take just $50,000 and do literally about a half a million dollars worth of research because I tagged it onto another study that was well funded. 

(Question from the audience) What do you think is the most important thing that we could be doing for ourselves?

(Answer) There’s some very important things that you can do for yourselves, OK. And remember that the issues with chronic fatigue syndrome are that sleep is non-restorative, the immune system is over activated and not working and viruses

Are you excited? Yeah, you should be! It is damn exciting! This is great! This is the good stuff; this is what you’ve been waiting for

reactivate, the endocrine system is acting a little funky and is a little disregulated and your autonomic nervous system which controls your blood pressure and pulse and all that is some sort of seesaw yo-yo thing that goes up and down. And the combination of all that makes you ill.

First you need to , well it’s so simple, eat right. The rule of exercise – exercise makes you relapse but you can exercise up to the point of relapse and you’re better than not exercising at all. So, in a global way the easy way to call it is the five minute up, five minute down rule. You can do five minutes of something then you got to take a five minute break. Five minutes then another five minute break. You add it up by fives not 5, 10, 15, 20. 5,5; 5,5; and keep adding fives so you recondition, OK. 

Supplements Supplements are aimed at first, good nutrition, but you are very, very deficient because you use up stuff very quickly so you use up the B vitamins and your minerals much faster than the next person. So a good multi vitamin, maybe double the normal dose of the multi vitamin plus a good B complex. Omega 3 fatty acids because they are anti inflammatory and quiet tumour necrosis factor but they don’t do it til you get up into the 4g range so one of those little caps isn’t enough. You need to get up to 4, 5, 6.

CoQ10 was anti-fatiguing but it was just the best antioxidant tested. Just absolutely sucked up all those free radicals better than anything else. They used a dose of 60 twice a day but they are tiny little people so do the maths for yourself. If you are twice the size of a Japanese person you might just want to double up on that CoQ10. 

Dig Deeper! COQ10 and ME/CFS

Inosine There’s a drug called Isoprinosine, Immunovir, that’s a pharmaceutical grade neutraceutical. Then we presented at the Reno meeting our own open label work with a hundred patients. And we had a very nice response, both immunologic and clinical response in the majority, 85% of the patients that took Isoprinosine which is Immunovir. Now, Inosine is the over the counter variation on that theme. 

If I can go back to sleep for a moment. Non-restorative sleep is a big problem for chronic fatigue patients. It’s one of the diagnostic criteria. Anyone here who’s ever had a restorative night’s sleep with chronic fatigue can tell me that when they do have a good night’s sleep they do have a better day. What we presented at the Reno meeting was our own review of charts and found a surprising number of chronic fatigue patients that develop apnoea over time, sleep apnoea. You’re so debilitated that you have a disabling fatigue, you have a justification for a proper sleep study. So I guess the studies. 

Dig Deeper! - Isoprinosine and ME/CFS

Xyrem   There’s a drug that’s in clinical trial for fibromyalgia, it’s called Xyrem. It’s a stage, slow wave sleep inducer and it puts people out very quickly in just 20 minutes, 10 minutes, sometimes 5 minutes. You take it at the bedside, you go down to a deep sleep. Now, during deep sleep is when you make your hormones at night and it’s a really important thing and most of you don’t have any slow wave sleep. When you get your sleep studies you’ll find you’ve got none and so inducing slow wave sleep might be good. Xyrem has had a successful fibromyalgia clinical trial and it is at the FDA trying to get the fibro label on the drug so that’s probably going to be the one that’s going to be reimbursable by your health insurance claim.

Dig Deeper! Xyrem and ME/CFS

(Thanks To fds66 for transcribing this)
 
View the original video at CFSKnowledgeCenter here

Segment 12: The New Miami CFS and Recovery Clinic


Dr. Klimas: This is Hannah Olenoff (sp?). Hannah moved here from Washington because she heard me talk about Chronic Fatigue Syndrome so much, and she got caught up in this with me, and I think I got her totally in this thing, and so she turned her life upside down so she could come down here and we could hopefully start a clinic. 

And hopefully model this clinic in a way so that it could be transplanted. That it is a teaching tool for clinicians so they can go through the various aspects: the sleep, the endocrine, the immune and the viral, and so on – and go through each individual part of what needs to be done in the evaluation and treatment process. 

So that’s very exciting and it’s also hopefully under one roof. The diagnostics we need - except for the lab – so that when you’ve been sent, for example, to a cardiologist, for say a tilt-table test, and then have him say, “I don’t believe in Chronic Fatigue Syndrome” – and that’s so discouraging. So we are trying to make this a compassionate place where we can do the guts of the work-up and diagnostics under one roof, with the people that are well-trained and compassionate and believe that this is a real entity and really work with you to be on your team.

Hannah Olenoff: Out on the table out there, there are some flyers - the most important thing on the flyer is the email address: info@CFSclinic.com.

...we are trying to make this a compassionate place where we can do the guts of the work-up and diagnostics under one roof, with the people that are well-trained...

OK? We are going to get the clinic open in December. I understand my life depends on it – (laughter), um..and just as soon as I know when we can begin taking appointments, I’ll get an email out to P.A.N.D.O.R.A and CFSknowledge, but most importantly to the email list I have at info@CFSclinic.com. This will be a cash-pay clinic. We will give you a bill that will be submitable to your insurance provider.

Dr. Klimas: Initially, when we set this clinic up – I know that some of you can’t afford it, that’s why we’re working so hard to make the University of Miami grow and be able to continue to do the insurance-based, the Medicare and Medicaid, and all the rest.

All right. I’ll be the training doctor and the consultant, and in fact the medical director, to be able to make sure it’s done right. I’ll be the one developing the templates. Now these templates are very exciting, and I’m hoping to see them used more broadly.

Please don’t think I’m leaving the University of Miami clinic. Let me underscore that – PLEASE DON’T THINK I’M LEAVING THE UNIVERSITY OF MIAMI CLINIC – so, ah, we’re going to pull this off one way or another. I’m just excited to finally be getting going because of these hundreds of people on the wait list that simply can’t find a doctor and there’s no doctor in town.

Now to be encouraged – if this thing really is a virus, every Infectious Disease specialist is going to know that part of it.

Dr. Klimas repeating a question from the audience) She asked specifically, that even though you’ve been sick for 30 years, is your prognosis or treatment with an anti-viral going to be different than someone who’s been sick for a year

My answer is don’t be discouraged by that. OK - just don’t be! There is something about being older…um… that the immune system just doesn’t reconstitute as quickly. Younger people – not so much duration – younger people are going to do better than older people, but the older people are gonna do well too, if we can project from our HIV experience.

I have to let a Vet get the last word – so you get the last question; OK last question:

Gentleman from the audience: It’s not a question, it’s just a statement. I want to thank you for the work you’re doing for the Veterans and the VA Hospital. As one of your patients, I just saw you last week and you gave me hope when I’d given up completely on other things, and I appreciate that and want to thank you on behalf of the Veterans. THANK YOU VERY MUCH.

Dr. Klimas: Well you're very welcome.

(thanks to Loldershaw for transcribing this)

Check out the Original Video's Here