Dr. Mikovits of the WPI to Host Live Q&A Session Regarding XMRV 22nd Jan

[Hope123]

Definitely my memory cannot add anything to this discussion. But I have this . . . question . . . quibble . . . about the above explanation.

1. I cannot imagine WPI was able to get four plus blood samples from each patient they tested. The two studies I've been involved with that are working with WPI have only requested one. Also, this has not been brought up with regards to the IC study — no one has said that their study may not be accurate because they didn't have blood from CFS patients drawn from four different occasions (although I think ? Judy mentioned that they should have run the tests more than the three standard times). I just cannot imagine any of the sources of the blood for the Science study had four samples from each patient. Nor do I think their Bio Bank contains four different samples from each patient.

2. If they had to test CFS patients from four different blood draws to be sure of their results, wouldn't they have had to test the controls blood from four different draws? How could they be sure the controls were negative without that?

So it's just not making sense to me. It seems rather that there is not usually a lot of XMRV in each sample — I cannot remember the quote here — so to test it multiple times will make it more likely for you to find that "needle in the haystack."

Just some thoughts. And because I don't trust my brain, they may be completely wrong thoughts, but they are my thoughts. I'm sticking to them.

​

1. I would not be surprised if they did have 3 or 4 samples from at least some people, esp. if they came out of Peterson's clinic since he has followed people for a long time. Like the other poster (sorry, forgot name), it's hard to tell if these patients were at their sickest or not. Sicker people may be more likely to see their doc but we all know how sometimes you're so sick and you know big changes aren't forthcoming from the doc visit that you just decide to stay home. It should be noted in the Defreitas study they also tested more than one blood sample from CFS subjects.

2. Good point.

3. Testing for HIV twice is a different matter.
A) If you are at high risk, sometimes antibodies to HIV do not show up immediately but 6 months later (the "window" period) so you can be infected but not be positive
on the test. So if you had sex with someone recently with HIV, you might need to get tested twice. That's also why people who are high risk should be regularly tested.
B) If the first test is positive, people are usually re-tested with a different test. THe first test is an antibody test; the second a Western Blot which looks at HIV proteins.
The second test is to confirm HIV presence.
(Note that WPI tested for XMRV PCR/culture/antibodies/Western Blot for Science article.)

4. If I heard correctly and progesterone stimulates XMRV, perhaps women should get tested more than 2 weeks after menstruation, when their progesterone levels are at the highest. Of course, this will be affected if they are on hormone therapy, have gyn issues, or are around menopause. WPI should look into this.

5. I liked that WPI made this talk public but they need to get this info out in a PUBLISHED articles and in complete form rather than dribs and drabs here and there. It's helpful for us but it doesn't present a good image to the scientific community. The history of CFS research is plagued by unpublished research (ala Cort's XMRV article) and poor public relations already.

 

[usedtobeperkytina]

There are so many posts for me to read, I have to respond in steps because I won't remember my points after reading them all.

Some here are talking as if some people receive a diagnosis of ME and some get diagnosis of CFS. That is not the case in the US, as far as I know and my experience. I had four doctors tell me I have CFS or FM (three of them sent me to other doctors because they don't treat it), and none of them used the term ME. I just looked and it is not on the CDC Web site. So for us in US, ME is CFS. There is no difference. I am not saying it is right or that the definition of CFS is right. In fact, CDC has lessened criteria for CFS so that it is thought by many to be of little use in surveys or research. But for us in US, we get diagnosis of CFS, not ME. So there is no difference.

Tina

 

[usedtobeperkytina]

CFS Since 1998, I think we are saying the same thing.

I think this might explain why this virus doesn't kill us. It can be turned on and turned off by these other factors, especially hormones. It explains why we have good days and bad days. And it explains why women get it more often and why the women who do get it get it during times of hormone level changes.

I am just so excited because the pieces of the puzzle are just falling into place with XMRV.

Tina

 

[Dolphin]

I agree with Mark, although I read lots of other posts after that so I don't remember his point. I just remember as I read it that I agreed.

I disagreed with some points Dysautonomia made that lots of people diagnosed with CFS don't have XMRV. Sorry, that was Dysautonomia, wasn't it?
We again might be dealing with the difference in US to UK. In the US, doctors don't like to diagnose CFS because they can't do anything. (I am talking about doctor population in general, not the specialists.) They don't think CFS (or ME) actually exists. Now I am talking about 50% of doctors, according to surveys I have seen. Someone with "it" is more likely to be misdiagnosed as depression in the US. So in the US, at least, I expect that about 70% of people diagnosed with CFS will have XMRV. And likely a good 30% of people with diagnosis of depression will actually have XMRV.

From what I am reading about UK, from you who live it, CFS has been considered psychological, so the docs there put people into that diagnosis, even if they don't have any biological abnormalities, in fact, they define CFS as people with no biological abnormalities. By contrast, docs who diagnose CFS in the US believe it exists (the other 50%) but they don't know what to do about it, they just send you to another doctor. If they don't believe it exists, they diagnose as depression.

As I have said in another post, there are main definition problems on both sides of Atlantic.

I don't know about XMRV but the situation in the Rep. of Ireland is more like the US with regard to CFS (or ME - different doctors may use different terms). I don't think CFS is generally a diagnosis given to people who just have for example depression here.

 

[usedtobeperkytina]

Now, I just thought of something funny. What were people who have CFS diagnosed with in the early 20th Century? Answer, neurasthenia, and psychological stuff. And what did doctors do to women which psychological problems? Surgical hysterectomy. And what would that do? reduce the fluctuating sex hormones, such as progesterone.

Maybe we all need hysterectomies.

(just kidding, my sense of humor is strange sometimes.)

But honestly, if something can even out our progesterone to an overall low level, enough for it to do what it is supposed to do without causing XMRV replication, then that might help.

I also think the thought of testing women at certain times of the month is intriguing.

I wonder why Mikovitz decided to do the four tests from blood at different times. How did she know this virus hides and then comes out, and then hides again?

Tina

 

[Dolphin]

Dr M's talk implies this if the samples had to be done 3,4,5 times to 'catch' a positive XMRV PCR result.

Dr. Chia mentioned this in at least one video with regard to testing blood for enteroviruses. Not sure which test he was referring to. He contrasted it with HIV and, I think, Hep B which he said are continuously positive.

 

[_Kim_]

I peeled off Rachel's transcription and all of the other posts that said "YAY RACHEL" and started a new thread:

Transcription of Judy Mikovitz Prohealth Lecture

 

[MargeM]

I wonder why Mikovitz decided to do the four tests from blood at different times. How did she know this virus hides and then comes out, and then hides again?

Tina

Good question Tina. I'm curious to know if they think this virus hides out in biofilms. Does anyone know if that's been mentioned by WPI? Could offer an explanation of why the virus isn't caught in every sample.


Live from the Lab
Viral Biofilms - Discovery of a New Propagation Mechanism for Some Viruses

http://www.bulletins-electroniques.com/actualites/61853.htm

Bacterial biofilms have been known for a while. They form the dental plaque on teeth. They can also be found in industrial facilities and intestinal flora. When they colonize medical implants, such as prostheses or catheters, the biofilms may cause recurrent infections. Accordingly, they have been the focus of extensive research to limit their growth and make them permeable to antibacterial treatment. For the first time ever, French researchers have shown that certain viruses are capable of forming complex biofilm-like assembles, similar to bacterial biofilms. These 'viral biofilms' would appear to be a major propagation mechanism for certain viruses

 

[Kati]

14. If I heard correctly and progesterone stimulates XMRV, perhaps women should get tested more than 2 weeks after menstruation, when their progesterone levels are at the highest. Of course, this will be affected if they are on hormone therapy, have gyn issues, or are around menopause. WPI should look into this..

This would be a very good question for Dr Mikovits. She herself mentioned that she liked talking to patients.

 

[usedtobeperkytina]

I found this very interesting. I listened to the recording of first thirty minutes again. I didn't catch this first time, but second time I noticed that, if I understood her correctly, she did not come up with the idea of looking for this retrovirus. She said "Bob" (Silverman, evidently they are on first name basis) had been urging her to look at CFS folks for the virus he found. She even acted like he kept asking her and finally she did it. She said reason was similar immune system abnormality as found in some of those prostate cancer patients.

This may mean that Silverman was the true believer first. She did say she got the primer formula from him. Maybe he discovered in playing around with XMRV since 2005, that it goes dormant, then starts replicating again.

Tina

 

[Dainty]

Some here are talking as if some people receive a diagnosis of ME and some get diagnosis of CFS. That is not the case in the US, as far as I know and my experience. I had four doctors tell me I have CFS or FM (three of them sent me to other doctors because they don't treat it), and none of them used the term ME. I just looked and it is not on the CDC Web site. So for us in US, ME is CFS. There is no difference. I am not saying it is right or that the definition of CFS is right. In fact, CDC has lessened criteria for CFS so that it is thought by many to be of little use in surveys or research. But for us in US, we get diagnosis of CFS, not ME. So there is no difference.

Tina

Agreed, thank you for bringing this up. In fact, I had heard from multiple sources that ME is simply what it's called accross the puddle, so that had always been my assumption up until now. Doctors certainly do not recognize the name ME, which is sad because I prefer it; Myalgic Encephalomeyelitis sounds so much more serious, complex, and intimidating than Chronic Fatigue Syndrome. But in the US and Canada the name is still CFS no matter how severe the neurological symptoms are.

 

[Kati]

Dr Hyde uses ME, which I am thankful for. As discussed in another thread, CFS was defined politically, as a group of symptoms, not defining an illness. It is insulting (the name) and undermined, misunderstood and laughed at as if it wasn't a serious condition.
Until we ger a name change, things will likely stay just the way they are.

I haVe attempted and will continue to use CFS as little as I can in my conversation and e-mails, and vocabulary. For I do not want to be judged as a chronically fatigue patient. This is of great disservice to all of us and I would advance it would also prevent governments to release funds for research for it sounds benign compared to cancers, asthma, MS, HIV.

 

[thefreeprisoner]

Ironically, the term CFS was coined here in the UK and it took over from M.E. for reasons which really escape me. I guess some patients liked it because it made them feel like it was going to be easier to recover.

I much prefer using the term M.E. as people then realise how serious it is, and it does actually describe a known phenomenon in patients - inflammation of the spinal cord - see Sophia Mirza's autopsy report.

You could try an experiment - start using this term instead of CFS and see if people's attitude towards you changes. I would love to know how you get on.

Rachel xx

 

[Dainty]

Ironically, the term CFS was coined here in the UK and it took over from M.E. for reasons which really escape me. I guess some patients liked it because it made them feel like it was going to be easier to recover.

I much prefer using the term M.E. as people then realise how serious it is, and it does actually describe a known phenomenon in patients - inflammation of the spinal cord - see Sophia Mirza's autopsy report.

You could try an experiment - start using this term instead of CFS and see if people's attitude towards you changes. I would love to know how you get on.

Rachel xx

Haha, I already do that when speaking with those who appear skeptical. In my experience it definitely helps, because they don't know what it is so the long-sounding complex scientific name gives the impression that it's something big and complicated, which it definitely is. "Chronic Fatigue Syndrome" results in an automatic assumed understanding of "tired all the time" and people automatically conclude that it's nothing more. So already any information you give on further symptoms is met with skepticism, because whether or not they realize it they've made up their minds to some extent what the name means, and you're explanation is challanging to their conclusion, and nobody likes being wrong.

So yes, ME works much better than CFS in my experience. So why don't I use it all the time? Because most other patients and organizations in the USA and Canada don't have that luxury, and I figure that as much as we despise it, we suffer together, right? And it will change someday; hopefully someday soon when this XMRV thing gets proven. Then this wimpy name will (hopefully) be kicked out for good. In the meantime, I use "CFS" with those in the know, "CFIDS" for those I'm unsure about, and "ME" for those times when I really can't afford to have people second-guessing the validity or severity of my illness.

 

[usedtobeperkytina]

Recently, I have been using "a neuro-immune disease, commonly called chronic fatigue syndrome." The word neuro-immune gets a sympathy response. "aaaahhh, I am sorry." Previously, when I just said CFS, I would get a confused look and no sympathy remarks, unless the person knows someone with it. And I wouldn't say ME because no one here would even know what that is. It would sound like I am making something up. "I never heard of that," I can hear them saying. How can I go on and on about ME and not say, "You might know it as CFS." As I said, ME is not a label here in US, by doctors, CDC, news media or anyone. So what would be the point.

Do you have the reference for CFS being coined in UK? I read Osler's Web and Hillary chronicled how the name developed. It was first coined by CDC by Folks, with input from other doctors. The first published paper using that term (in a research journal) was a paper he authored. Honestly, if I remember correctly, Komaroff was part of that group, but he later regretted it.

Up until then, it was called chronic EB. And if I remember correctly, at the time it was phrased, (CFS, that is), it was thought to only be in Lake Tahoe, but the other claims were thought to be a result of mass hysteria from media hype. (CDC opinions).

All of this was before DeFreitas.

There have been discussions on changing the name. I remember CAA included some healthy people in a focus group to ask them about perception of people with CFS. Their recommendation, after learning all about the illness, was that better education of the nature of the illness was more important than a name change, since it would be confusing to the public. They said that they did not know, until they were educated as part of this focus group, about the severity of the symptoms, only knowing of CFS on a very surface level, through previous news media reports. So they suggested better education.

And some doctors, including a group on the "name change committee" (sorry, that may not be the proper name), decided that CFS is a bad name, but until more is known of the illness, the cause, since it does involve so many abnormalities and systems, the name should not be changed, again, because it will cause confusion.

I didn't agree at the time. I thought neuroendoimmune dysfunction syndrome would be accurate and would created a better understanding. I think someone in the name change committee, was it Klimas, suggested this name. I like that better than ME, CFIDS and CFS.

But all of this name stuff may be over within a year. YAY!!!! We now have XAND.

Tina

 

[Samuel]

Obscurify email addresses

Excellent summary!

I think we should obscurify Judy's email address everywhere it appears on this forum. No point in increasing her spam by allowing bots to pick them up.

For example, "a@b.com" becomes "at b.com, a".

For my part, although I have a million things I want to ask her and say, I have refrained from doing so because I do not want to take time from her lab work.

 

[Adam]

I had The Snip post CFS diagnosis. Didn't help with the fatigue. But it does mean I only got 2 lazy teenagers rather 3 or more! Only joking. Which is good I suppose, isn't it? Why don't we start a CFS joke page? I only know one. Doctor to patient: The good news is you've got CFS. The bad news is...you got CFS

 

[Adam]

Never had a cortisol test. Don't know if they do this for CFS patients in UK? I have noted that when the adrenalin gets pumping it overides the fatigue for a time and then I feel like *%% afterwards.

 

[Lily]

I had The Snip post CFS diagnosis. Didn't help with the fatigue. But it does mean I only got 2 lazy teenagers rather 3 or more! Only joking. Which is good I suppose, isn't it? Why don't we start a CFS joke page? I only know one. Doctor to patient: The good news is you've got CFS. The bad news is...you got CFS

Humor is healing and always welcome!!! Check out the Joke of the Day thread in the Community Lounge, also Amusements thread. Welcome to the forums, Adam!

 

[jackie]

Hi Guys! My PRIMARY CARE Medical records have CFS as the diagnosis, because as my Dr. informed me (after I nagged him to change the terminology) he has no billing code (ICD code) for ME/CFS...only CFS (780.71).
On the other hand, My Infectious Disease Specialist uses the term ME/CFS as my Dx in my CHART (I think a lot of DR's. use the codes for Viral Infection, CFS and Myalgia combined?)
Whatever it takes, I guess!

jackie