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From the 1st annual XMRV conference

Martlet

Senior Member
Messages
1,837
Location
Near St Louis, MO
Definitely thought lines were being drawn but I thought Judy Mikovits handled herself superbly. I don't feel any wiser now than before I watched the Q&A though. I'll have to watch it again or read a transcript, I think. I am convinced that the problems come from the various criteria under which they are diagnosing CFS/ME.
 

George

waitin' fer rabbits
Messages
853
Location
South Texas
Didn't somebody say that the director of the NIH (possibly the NCI, it was ambiguous) had stayed for lots of talks and had asked questions? That Frank Collins guy, possibly? It was one of the panelists, who was talking about the NIH & NCI and then said that the director, etc. but didn't say of which.

Yes, Villagelife was the first to report it but Francis Collins stayed through the second, day all presentations, and asked questions. Short of Kathleen Sebius come and sitting through the conference I'm not sure we can get bigger than Collins can we?? Oh director NIH is his job title.
 

Rita

Senior Member
Messages
235
Highlights from my notes:


Mikovits - says (we have) "at least 50 positives from the London area".

Mikovits - we had independent confirmation, from 3 different groups, of the research studies you heard about today (I suppose this means the WPI's UK study of 50 patients).

Mikovits - blood working group has discussed/seen problems with collection and storage - processing protocol needed.

Mikovits - we set up this study to look at all the viruses - Does CFS have an underlying immune deficiency like HIV? This is the hypothesis we are following and have setup chips to look at all different viruses. (is JM referring to her ongoing study that links XMRV to immune irregularities?) (couldn't take good notes here, as JM talks like a speaking bullet!)

In Spain there is a little study of 15 CFS with the same methodology like the WPI, Mikovits came to Barcelona to tell them.The spanish researchers are today in Maryland, at the workshop.Surely Mikovits has spoken to them and knows the results, that are not published yet.But for sure are positives, because they want to continue researching about the XMRV.They are specialists in HIV.
 

shannah

Senior Member
Messages
1,429
I just think that they have no idea how sick some of us are. They're very new to this and their focus is on the retrovirus, not the details of CFS. They're at the beginning of a learning curve.

Yeah - it's one thing to say that some of these people are ill, housebound and haven't had a life in 20 -30 years. Perhaps it needs expanded with a few more details saying that some of these people are suffering horribly, in excruciating pain and living in torment subsisting every single day week after week, month after month and year after year.

All in all Judy once again did a wonderful job advocating for us. I was hoping for more from the others though.
 

leela

Senior Member
Messages
3,290
I think they are right to try to focus on the science, but at the same time the confusions can only be clarified with reference to the politics. It's sad that politics gets involved in the science, but as we keep saying, that is simply unavoidable because it is already the case; it has already happened. Scientists who want to resolve this have to understand that, I'm afraid. That's my view of it...

Indeed, Mark. Call me crazy, but I don't view her pointing to the CDCs definition in this context as political. I see it as a reference to BAD science and the importance of eliminating BAD science from the mix so that we can move ahead with valid study.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Yes, Villagelife was the first to report it but Francis Collins stayed through the second, day all presentations, and asked questions. Short of Kathleen Sebius come and sitting through the conference I'm not sure we can get bigger than Collins can we?? Oh director NIH is his job title.

Thanks George (and villagelife, sorry I missed that post!) - that's great news. Hard to see why he'd stay unless he thought it was the next big thing.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
In Spain there is a little study of 15 CFS with the same methodology like the WPI, Mikovits came to Barcelona to tell them.The spanish researchers are today in Maryland, at the workshop.Surely Mikovits has spoken to them and knows the results, that are not published yet.But for sure are positives, because they want to continue researching about the XMRV.They are specialists in HIV.

That's good news Rita... thanks for the info... It's nice to see even more positive studies in the pipeline...
 
Messages
5,238
Location
Sofa, UK
Myra cetainly made her, um presence felt. Why does she hate Dr. Mikovits so completly?????

And vice versa. I thought it was extremely illuminating to have all these people in the same room. It clarified where the differences lie to some extent. Notice a very strong but respectful disagreement between Mikovits and Coffin over clinical trials. Mikovits is pushing for clinical trials soon, she has a translational approach and wants to forge ahead at the cutting edge to help those patients who have identified XMRV+. Coffin disagreed to emphasise that without a standardised quantitative assay that approach will only help that handful of patients and will not yield any data that anybody will accept. McClure, I would say, stands right at the opposite extreme point of view to Mikovits. Her approach would be much, much, slower.

There is a fundamental divergence between two opposing approaches here. Forge ahead with a small group of patients, go for it! style US approach. Versus "now just hold on a minute" UK mentality: very methodical, letter-of-the-law approach, requiring cast-iron validation of each step in the process before the results can be generalised globally. One can easily see the two approaches as complementary. One approach generates new knowledge with a high degree of risk, the other validates it and requires every t to be crossed, every i dotted, before anything can be accepted. Mikovits drags McClure along kicking and screaming, McClure won't follow until the whole world agrees.

Just a process.

But the sheer energy of the confrontation indicates that something very new and significant is taking place...and Mikovits is driving that process. I see Coffin as a kind of regulator: I love that guy! (And Judy too, of course, without her, nothing would have happened in the first place...)
 

George

waitin' fer rabbits
Messages
853
Location
South Texas
In Spain there is a little study of 15 CFS with the same methodology like the WPI, Mikovits came to Barcelona to tell them.The spanish researchers are today in Maryland, at the workshop.Surely Mikovits has spoken to them and knows the results, that are not published yet.But for sure are positives, because they want to continue researching about the XMRV.They are specialists in HIV.

That's way cool Rita. I'm sure they talked to her while there and I'm looking forward to the study being published. Can you make sure to publish it???? Will it be in spanish?
 

mermaid

Senior Member
Messages
714
Location
UK
I found the words underneath a bit confusing. It was when I read "appropriate trolls" written instead of "appropriate controls" that I stopped looking at them ...
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I found the words underneath a bit confusing. It was when I read "appropriate trolls" written instead of "appropriate controls" that I stopped looking at them ...

Glad to see those trolls are learning!
 

Deatheye

Senior Member
Messages
161
Audience member - HTLV-1 causes both a neurological disease and cancer - does anyone understand how, and does this have anything to do with XMRV?
.

HTLV is a Retrovirus. XMRV is too. XMRV was found in CFS and prostata cancer. During the FAQ they raised the question how one Virus could cause cancer and CFS, both looking like something totally different. They named HTLV as a known Retrovirus which causes two very different problems:Cancer and Neurological diseases. To show that XMRV causing CFS and Cancer, two very different ilnesses, wouldn't be something new.
 

leela

Senior Member
Messages
3,290
I found the words underneath a bit confusing. It was when I read "appropriate trolls" written instead of "appropriate controls" that I stopped looking at them ...

another hilarious one was "Brass State" cancer! I wouldn't want the live captioning job ;)
 

omerbasket

Senior Member
Messages
510
I'm really not sure, but if I understood the things that have been implied - Dr. Bell and Dr. Hanson did a study together which came out positive. But perhaps I'm wrong.

I'm very disappointed by Dr. Coffin's opinions regarding treatment with antiretrovirals for individuals who are very sick. He's underrating the importance of helping a single person. He said something like: "So, if a patient comes to a doctor and he prescribes him antiretrovirals off-label - and even if this patient improves on them - it has less than 0 contribution to the science". I would like to say about that: First, it doesn't have "less than 0 contribution to the science" - because that implies that he is saying that's bad for science. It might not be good - but it shouldn't be bad. On the other hand: I'm very angry about scientists who think they own the world. If a patient is very desperate and asks a doctor to prescribe him antiretrovirals - and the patient knows that they are dangerous and still decides that he would rather take the chance - I think it should be the patient's right to get this treatment. I'm angry that doctors think that they can choose for another person what he should do. There are things in life that are a matter of choice - that no human can say, before doing them, if it's a good idea to do it or it's a bad idea. It's just a matter of choice - which should be given to everyone when it is a choice that he makes about himself. On person would invest 50 dollars in the lottery - the other wouldn't. Is it inacceptible that they both made the choice for themselves? And Dr. Coffin, why didn't you mentioned and emphasised that if a doctor gives a patient antiretrovirals and that patient gets better - even if it doesn't contribute to the science - it's still a great thing? In the Jewish tradition we have a sentence that says: "every person who savees a single soul - it is like he saved the whole world". There might be a few reasons as to why this senctnce is being said - but I think it's clear that when a person dies he can no longer see the world - at least not threw his physical eyes that he had in this world. So for him - it's very possible that there is no world, at least as he used to know it. That is why changing a person's life is very important and very siginificant - even if it does not contribute to science, and such a thing shouldn't be underrated. Ofcourse science is very important - but helping a single person is important too.

Now, for other stuff: It is disappointing for me that the Swedish study didn't find the viruses. They said they would include some fibromyalgia patients, and therefore I hoped that this would make a stronger case about fibromyalgia being connected to HMRV too. However, I'm delighted that they didn't find any HMRV at all. That says to me that there is probably a defect in their testing methods. I'm thankful to mindy asking about "why should we expect that the CDC, who has been treating CFS like a pshycogenic disease all these years, would find now that it's related to a retrovirus?", and I'm very angry about the brutal way that that scinetist who lead the session shut her off. It might be okay not to answet this question - but he did it in a very rude and ugly way.

By the ay, at the end of the meeting I heard one person saying: "I'm now more confused than I was before I came here", and another person told him: "well, for me it's much clearer now" (I didn't recall hearing him talking about stuff that he knows and other don't - but that makes sense and since you all heared that, it must be right).
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
HTLV is a Retrovirus. XMRV is too. XMRV was found in CFS and prostata cancer. During the FAQ they raised the question how one Virus could cause cancer and CFS, both looking like something totally different. They named HTLV as a known Retrovirus which causes two very different problems:Cancer and Neurological diseases. To show that XMRV causing CFS and Cancer, two very different ilnesses, wouldn't be something new.

The parallels between the two viruses are very interesting and, to me, they seem quite significant.
 

leela

Senior Member
Messages
3,290
HTLV is a Retrovirus. XMRV is too. XMRV was found in CFS and prostata cancer. During the FAQ they raised the question how one Virus could cause cancer and CFS, both looking like something totally different. They named HTLV as a known Retrovirus which causes two very different problems:Cancer and Neurological diseases. To show that XMRV causing CFS and Cancer, two very different ilnesses, wouldn't be something new.

I found this to be one of the main illuminating points of the talk. Thanks for reminding us. Mikovits stated it very plainly.
 

George

waitin' fer rabbits
Messages
853
Location
South Texas
I don't know about the rest of you but I'm dead and dieing. I need to walk my human, (she did such a great job with all the typing today) Feed her and put her to bed for the night. (big grins)

I'll check in tomorrow and see if some of those papers make it to the publishing gate.

Oh, and don't forget the OFFER conference is Saturday, Cort will be going and reporting back. Anybody else going????
 
Messages
5,238
Location
Sofa, UK
More haste less speed?

I think John Coffin and Judy are not that far apart on clinical trials--but Coffin is right, one has to be very careful or they could backfire. Mindy was great, but it seems clear that we see a bunch of professionals who will not countenance open attacks on the CDC, but who are probably smart and wily enough to bypass and negotiate around them to get where they want to. I think in a while it won't matter if the CDC puts out another negative study--and I don't think they will. Reeves is past history. Let the smart folks get on with business--and I think and hope they will. Chris
Excellent summary Chris.

Like driving a car; careful, watch your speed or you may spin off (or terrify McClure so much she jumps out the back seat)...and then, even if you're rightly in a hurry, you don't get there quicker in the end because somebody has to go back and pick up McClure, sooner or later...

Discussions about the elephant in the room (CDC) can take place off-camera...
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I don't know about the rest of you but I'm dead and dieing. I need to walk my human, (she did such a great job with all the typing today) Feed her and put her to bed for the night. (big grins)

I'll check in tomorrow and see if some of those papers make it to the publishing gate.

Oh, and don't forget the OFFER conference is Saturday, Cort will be going and reporting back. Anybody else going????

Thanks for everything today George... you've been amazing... what a lovely little doggy you are!
Take good care of your human tonight!
:Retro smile:
 

FancyMyBlood

Senior Member
Messages
189
I'm still curious about why only the negative studies have been communicated (CC twitter). Does anyone have an explanation?