XMRV Buzz - Take a Deep Breath/the Big XMRV Meeting, Singh On XMRV, Sample prep?

the latest Buzz.....

 

Thanks, that was interesting. I wonder why the WPI was not interested in that double blinded study. But then on the other hand it's not so important, because as i see it, both the BWG and the Lipkin study will do that, a double blinded study involving multiple labs testing patient samples. Right? This is very important, if the WPI can replicate its results in such a study, which is properly designed, i don't see how anyone could still have doubts.
I suppose the Utah expert is Dr. Singh?

 

Cort,
Are all of Dr. Enlander's comments available? I'd like to read them free of interpretation.

That study would be expensive. I wonder if he expected the WPI to fund it.

 

Given that Wessely etc think that an unreasonable fear of a chronic viral infection if a perpetuating factor in CFS it's not at all suprising that they would want to get out a quick negative study. I just wish they were more honest about it.

I can't believe there's still no major news.

 

I do find it surprising that a figure of his importance in a country like the UK would act in such a way. People have to know this. I wish everybody in the UK could read Dr. Enlander's comment.

 

I realize they were kind of hard to pick out - I put them in italics.

 

I agree - those will be the definitive studies.

 

The latest Buzz

 

Thanks Cort, for the interesting article and for your thoughts about it all.


I think it would be very significant news for us if Cheney's patients tested positive at around 97% to 98%, as you indicate they might in your article (83% + 15% = 98%). This would take the figure up to what Judy Mikovits reported that she has now tested the original samples from her Science paper (97%).


Maybe Vipdx's samples are now testing positive for XMRV at a higher rate than the reported rate of 50%, now that they are using their newest serology testing.
If, as Cheney says, two thirds of negative samples were subsequently testing positive, then this might put Vipdx's figure up to around 83% for all of the Vipdx results.


From what I understand about the Lipkin study, he is probably using the Canadian consensus criteria and the only other special criteria for selecting patients is that they had to have had a sore throat or tender glands when they originally got ill (This vague set of criteria was reported on the WSJ blog).
I think that this selection criteria would select the every-day ME/CFS patients that we are all familiar with, and so if they test a significant number of patient samples positive for XMRV using just these criteria, then I believe that this would mean that most normal ME/CFS patients would test positive for XMRV, especially if they experience post exertional malaise, or some other indicator that it is a neuro-immune disorder rather than another form of fatigue. I have my own theory that most of us will test positive for XMRV, based on the research to date, including the reported preliminary results from the WPI's unpublished UK study, which are highly significant results for our community. I think a vast majority of ME/CFS patients will test positive for XMRV or PMRV.


With regards to the reported genetic diversity of XMRV: Since her original study, Judy has been widening her search in order to look for more genetically varied virus types. She has reportedly been testing for various types of XMRV and PMRV, so it's not so surprising that they are now finding higher rates of genetic diversity. Like you say, it is fascinating how it's all panning out.


Very interesting that you tested positive for XMRV, Cort... Thank you for reporting that... That backs up my personal theory that almost all of us on the forums will test positive for XMRV, in time, as they perfect the detection methodology. It especially reinforces this theory as you had slow-onset, and also you've always said that pain has been a significant feature of your illness, as much as fatigue. Hope I'm not misrepresenting you there? And am I right in thinking that pain has always been more predominant for you than brain-fog? Whereas I get almost no pain when sedentary, but loads of brain fog, so I think XMRV will apply to ME patients with various symptoms and various histories of onset etc.


Does your positive XMRV test change your outlook at all, in terms of your own future health? Does it give you more hope, or less hope? If that's not too much of a personal question. And does it alter your own views about the general nature of ME/CFS in any subtle ways?

 

I would say that pain is significant but fatigue is more significant. Brain fog is a good question - yes it is there - it seems to be particularly there when I have to talk to people - not as much when I read or write, but then again that depends in whether I have overdone it physically. Of course I've been swimming in this CFS fishbowl for several decades now - and really don't know what it would be like outside of it.

I am actually doing quite well in small but significant ways with mind/body stuff so I project that my health will continue to improve. Whether I can get to real health - ability to exercise, libido back on track, feeling relaxed and well - doing that kind of stuff over time - well, that would be a very long term goal - so I am very happy to see something come up that could shorten that process.

It doesn't change my view of CFS much since for me the ultimate cause of it has always been a mystery. Since XMRV has the potential to do so much - it would fit fine for me. :Retro smile:

 

Red Cross Ban (and Patient Campaign Blood Ban) Plus All the Studies Fit to Print Fr

The latest from the Buzz

 

This is perhaps the biggest thing I have learned, or rather, realised, this week, about myself.

I had an important work-related meeting this week about my employment, which I've been stressing about for a few weeks now. During the course of it, I noticed something stark, which I don't know why I've never noticed before, I suppose I just need the stark contrast to ram the message home to me because this has been the same for me, for years.

I was talking, during the meeting, for a few minutes, and once I got into my stride, I was talking quite eloquently, I thought; and I remember thinking, as I was speaking: my cognitive function is better than I thought it was today; my brain's obviously working pretty well because I'm racing on and expressing myself very well and at speed. I had one of those moments where I asked my self - in a moment of self-doubt - whether I have been overemphasising the cognitive aspects of my condition, because there didn't seem to be a heck of a lot wrong with me on this occasion.

But then my boss replied...and I just couldn't follow him; he was talking way too fast, and I realised that I get this all the time, all the time, and I have developed such coping strategies to hide it from people that I've hidden it successfuly from myself to some extent too in the process: I don't even tend to think about what I can't do any more, mostly I just cope with it and forget about it.

I am just really slow at dealing with incoming verbal information. I'm also really slow at adapting to a sudden change in context; a different person starts speaking and it takes me a few seconds to adjust and work out who's talking before I can begin to try to listen to what they're saying.

I also really, really struggled when my boss pushed a form across the table for me to sign, and that was the moment when the light bulb went on and I realised how significant the problem was. It was as simple as a form could be, I've signed that same form so many times before - but it took me about a minute to work out what it was, and it took me about 30 seconds each to work out what day, then what month, and then, what year it is.

Once I adjust, and once I have had just a little leeway to process the incoming information at my own pace and to "switch context", I can analyse it and deal with it just as well as I ever have. All the rest of my cognitive faculties appear to be unimpaired, as far as I perceive it. And I can talk, or write, as well as ever as well. But listening, to a new voice, or with background noise, or with many people in the room, just sends me into a daze in a way it never used to. And thinking back, I have been like this all the way through, ever since I was 25 when I got sick.

All of which means that interaction with my colleagues is really difficult, because I must appear a bit slow, a bit dim, and their assessment of my intelligence is very much out of proportion to the reality; I can see that all the time and it's very frustrating, another example of the 'open prison' phenomenon, of being in the world but trapped and unable to get out what is inside me.

Only when I started posting on PR did I begin to recover the confidence to write, as well. I'm sure that writing in a less protected and understanding environment, where I would have to deal with aggressive, or rapid, and uninformed challenges to what I'm saying, would not be possible for me. Here, people understand our challenges, and are able to be more sympathetic and tolerant. With the confidence I got from that leeway here, I found I was able to open up and discover things about myself that have been locked away and lost for more than a decade.

By the way, I'd encourage all lurkers reading this to take note of this point: PR must be a good source of info for many lurkers I'm sure, but the really big benefits come when you join the community and get to know people, and get to know more about their context, and get to ask the questions that are of specific concern to yourself. And also you get the confidence that comes from being listened to by sympathetic people who understand you in a way that other people can't - one can interact socially once again! It's a huge difference as compared to lurking, and I know it's transformed many people's lives, including mine.

So that's my discovery for the week: I can write, and I can speak, perfectly well still, but I am really starting to struggle now at processing incoming verbal and social information quickly. I can still process it in a very intelligent fashion, but it can be a really, really slow process.

 

I know exactly what you mean Cort... I've only been ill for 6 years, but I find it impossible to remember how I used to feel when I was healthy, especially the normal subtle range of positive feelings and emotions.

 

Not a day goes by without me wondering if the fatigue I am feeling after an activity is normal or ME/CFS... I have a mild case, so I am still able to do a lot of things, just with great difficulty. I have only had the fatigue symptom for a year now and it's almost scary how quickly you adjust to it and incorporate it into your life.

 

Hi Mark, my take on these comments is slightly different. With me, it is about change. Verbal info that I expect is fine. Verbal info I am not expecting might as well be a foreign language. When I was working on my Ph.D., I really noticed the context switching problem. In my zone, I could deal with anything. Out of it and I took several minutes for my brain to adapt. The implication of this is that we deal very badly with emergencies unless our response is pre-thought.

I have spent decades now thinking an analyzing situations. I have responses prepared for most things (yes, even aliens knocking on my front door!). What gets me, every time, is something similar to what I have thought about but subtly different. So I respond in a weird is-this-guy-sane kind of way that has others look at me funny. Only later, when things are calm, can I think through the situation and devise a new coping strategy.

Until about two years ago, I had been doing all this unconsciously, as part of my coping strategy. About two years ago it became very conscious. However, I was kind of aware of doing it going back to about 1990.

So I guess my question is Mark is it new fast verbal info that is difficult for you, or info you weren't expecting and is arriving fast? Something that requires you to build up an entirely different thought structure to cope with?

Just curious, because I can relate to your experience!

Bye
Alex

 

Hi Cort,

The link for this on the XMRV Buzz page doesn't appear to be working properly, (at least for me). Just thought I'd pass this on.


'All the Study Data Fit to Print' - the FDA has released a nice chart of all the published and conference study data on XMRV prevalence. The chart provides the area study originated from, the type of samples used, the results and the methods used. Thus far, according to the chart 6 of 13 prostate cancer and six of 14 CFS studies studies have been positive. It does not include some studies that haven’t made it to the conferences such as the Joliceur study. It does include the Cheney study (even if they spelled Cheny wrong). The ratio of positive studies drops a bit as they move into other disorders (2/7) five of which were HIV studies. Except for a few studies with almost 0 results the same ‘find it or not’ pattern prevails with researchers finding XMRV in both healthy controls and patients or not at all.

 

Spot on Alex, as I was writing to relate that experience I was realising that it was the switch of context that was significant. Unexpected changes of direction, unexpected input, switching from talking to listening for example, where I haven't had time to mentally prepare for that.

So yes: I nearly mentioned context-switching explicitly when I came towards the end of writing; earlier on I was thinking "it's fast verbal input" but I now think what you said is more accurate.

I also had another experience recently which may or may not be described by the second part of your quote above. I had a training course which was all new information; most of what it was based on was stuff I knew but hadn't used for some years. It was verbal info, and seemed very fast to me, faster than I could cope with. I had to concentrate really, really hard to try to cope. It wasn't anything that should have been beyond me at all, not rocket science at all, but it all had to fit into a context that was new and it was all verbal and coming at me very fast (or what seemed fast to me).

I switch in and out of conversations a lot; a lot of the time when friends are talking I just drift off and pick up little bits here and there.

I'm really interested by this analysis; I'm going to be watching out for all this over the coming weeks to see if I can further analyse exactly what kinds of information input I struggle with. But as a first try at a description, context-switching, unexpected info, and info requiring a new thought structure, sounds pretty accurate to me.

Further reflection: I am still (as I always have been) irritated by how slow TV spoken word is; I struggle to stay awake because it's so slow! So it isn't the speed of the verbal information coming in, but more its unpredictability, I think that's spot on.

I've been advised recently that a neuropsychologist can give objective tests which can measure all these different types of cognitive functioning, so I think I'll try to have that done - would be extremely useful to have proof of this.

 

The state of Texas was kind enough to provide me with an evaluation by a neuropschologist. (grins) I failed miserably. The test only took an hour and cried through most of it. The interview was designed with general conversation about how things were going in my life interspersed with test question.

He would asked me to describe my symptoms then change and ask me to count backwards from 100 by threes (failed). Then he would say stop and ask me about my education then say that he was going to "say 5 words that you need to remember and remember in the correct order later on when I ask you for them" he only said them once and would not repeat them, then he went on to ask about friends and family and then came back and asked for the words. I just sobbed because for the first time in my life I could not only not remember them but couldn't handle the fast changes in the conversation. I wasn't able to get out ahead of the conversation like I used to. Conversations to me were boring before I became ill, in that I could anticipate the responses like a chess game. I was often at check and mate before most people had moved their bishop. Now I can no longer keep up with exchanges of this nature. It sucks but my ex says it makes me more human so there is a silver lining.

What scares me is discussing this with my doctor. It's been four years and I've learned to hook myself to the stove with an old leash when cooking so that I don't wander off and burn down my house. But I won't talk to my doc about it because the minute I do then there is a very real possibility that the doctor will then begin to discount anything I say from then on out. I crave more than anything a resolution to the cognitive problems. If I can have anything it would be just some of the cognitive function back that I've lost. The fatigue and other problems are livable but I really, really miss my brain.

 

This resonated with a moment I had yesterday, though not specific to brain fog. I was seeing a World Class Neurologist to rule out MS- which my siblings both have- and he was intrigued with my whole CFS story. When he asked me about treatment I mentioned the nutritional supplements I was taking, and I added that my best treatment was meditation practice.

He gave me a double take and said "Meditation is great- but that's NOT medical treatment!"

In that moment I realized just how scarce our options are- I have accepted strategies and coping mechanisms that seem appropriate to me- but are just grossly inadequate by real world standards. It was a lightbulb moment.

 

Also that habit of telling yourself that things are fine in a mentally sharp or symptom free moment, and then questioning whether you are just imagining the whole condition, is refreshing to hear from a different person. It all plays with your head and forces to you to adapt on a primal level, one that your average person has no real way of understanding.