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

[Cort]

the latest Buzz.....

XMRV Buzz Nov 21st – Mice, Dr. Enlander and being ‘Undefeated’
by CORT on NOVEMBER 21, 2010[EDIT]
The XMRV Buzz -short takes on the world of XMRV – now be appearing regularly on “Bringing the Heat” Blog. Subscribe to it by going to blog.aboutmecfs.org

Unbroken – the Louis Zamperini and Laura Hillenbrand Story - no it’s not about XMRV but it is about Lauren Hillenbrand and that means CFS. She is a great spokeswoman for CFS and Louis Zamperini was a great vehicle for her next book, seven years in the making and which she says both brought her life and cost her physically.

A Mouse Model for XMRV - And now to one of the more interesting twists – developing a mouse model for an er…mouse derived virus? Of course we now know that XMRV does not appear to be found in the mice much (if at all) either in the wild or in the lab (which does kind of make one wonder how it managed to contaminate the WPI’s samples……if the worry was contamination from lab mice and it’s not actually in lab mice….then how did it???? Never mind)… the key with this study is that researchers have found a mice they can manage to infect XMRV with (it wasn’t easy), and now that they can do that they can make them ill, probe them, dissect them, feed them drugs, whatever….essentially the way is clear for the magnificent animal research establishment to go to town.

Thus far they’ve found XMRV in the spleen (expected immune organ), the blood (naturally) and the brain (most interesting)..(If mice have prostate glands and it was found in them they didn’t (perhaps out of respect for their privacy) report it was found there). The mice did recognize XMRV as something not good and did amount an immune response to it. Like humans their immune cells were able to knock it down with their all purpose XMRV transfiguring APOBEC enzyme…and that was that…..Now about those brain cells……where and what kind???

Dr Enlander Talks – Dr. Enlanders comments on the muddled state of XMRV thus far.

First he provides an insiders view on what we can now see was a very hastily done first followup study that appears to have broken speed records for study approval, completion and publication (thus implicating an nice swath of the UK CFS medical establishment in a rush to judgment… wouldn’t they have been smarter just to wait a month or two? Somehow they didn’t mind that everyone else would be agog at their ability to manipulate the process -which, come to think of it, may be the most telling thing – that they just didn’t mind ….Where would we be without the British? )

.He notes the both the differences and the close association between XMRV and the MLV’s found in the Alter study – a tricky and still unresolved subject and notes some shortcomings on the pro-XMRV side; despite it’s strong points the first study had some of its own, ahhh, issues (and how unbelievable is it that here we are, a year later, talking about the first study….) and the WPI’s lack of receptivity for whatever reason (and we have no idea, so let’s not even speculate) regarding his own proposed double-blinded XMRV study. He ends by noting something most ME specialists (and all patients) would probably agree with “All of us would love to initiate treatment’ – and let’s leave it at that. He is reportedly currently at work on a double-blinded XMRV study using multiple labs.

“I was asked to comment on the XMRV research. In Oct 2009 a virtually unknown Institute in Reno, Nevada, the Whitmore Peterson Institute, published in Science exciting research in which they claimed to have discovered a new relationship between the XMRV virus and CFS/ME. This was exciting news, we hoped it was the initial foundation of proof, that CFS/ME was a physical disease.

Within 6-8 weeks, miraculously, papers were in publication denying the original research. Usually it takes my Medical Center several weeks to allow a research proposal to proceed, followed by several weeks or months for the research to be completed and then several weeks or months for journal acceptance and publication. So I was astounded, as were others, at the time frame of the response, the journals and the relationships of the publishing research centers. Then a virtual boxing match occurred. This was to the detriment of all. One institute claimed poor cohort selection, another bad specimen handling, another claim related to lab contamination , stale samples that were stored for years, one even blamed the Chinese company that made the specimen tubes and so the complaints and cross complaints mounted. Harvey Alter, a research physician at NIH of ultimate repute, showed that indeed there was a MLV virus in CFS/ME specimens. This was countered by statement that MLV did not replicate the XMRV virus research. In essence this is true but the MLV virus and the XMRV virus has similar virion particles and/or cross reaction. Instead of certain research workers blasting this difference, it would have been opportune to investigate the relevance of the presence of either of these virions.

Both the protagonists and antagonists are not flawless. The initial research was not replicated in a double blind, multiple lab replicate study by independent selection. I offered, Whitmore Peterson, an independent replicate study of carefully selected Fukuda/Canadian criteria patients and controls between five viral labs. They were not interested. The whole matter of this research is puzzling, agenda seems to overpower the research.

All of us would love to initiate treatment, if indeed the virus was causal and if the treatment neutralized the virus. Lab research into non toxic neutralization in cell culture is incomplete and must be performed prior to using toxic anti-retrovirus treatment in patients. Action against XMRV should be explored in vitro of existing non toxic anti-CFS/ME methods viz; Ampligen, Kutapressin, Nexavir, Hepapressin, isoprinosin etc. In future I hope to see a united effort in exploring this devastating disease rather than a continuous boxing match – news that even our Utah XMRV/MLV expert was finding XMRV more complicated than expected”

 

[eric_s]

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?

 

[Roy S]

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.

 

[Esther12]

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.

 

[eric_s]

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.

 

[Cort]

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.

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

 

[Cort]

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?

I agree - those will be the definitive studies.

 

[Cort]

The latest Buzz

• Dr. Cheney Reports - in his latest newsletter or at least that part of which is available for free Dr. Cheney reports news on the serology tests emanating from VIP Dx. Earlier Dr. Mikovits noted that antibody tests picked up more positives than PCR tests.Dr. Cheney noted that 2 out of the three people who tested negative by PCR later tested positive by antibody tests. Overall 83% of his 47 patients have tested positive. He expects the percentage to rise to 90% when all the serology results are in putting the number right about where Annette Whittemore suggested when XMRV broke. It appears from his numbers that the antibody test may add maybe another 10-15% to the percentage of positives. Rather startlingly Dr. Cheney reports that 60% of family members without CFS also tested positive but the numbers tested were very low (10 ) and therefore could change dramatically. Nevertheless, if they are ultimately validated, they would indicate that XMRV is quite infectious not a surprising finding given the mostly anecdotal evidence to date; XMRV appears to be a more robust virus than HIV and may be able to survive in the saliva and semen and cervical fluid.
  How odd it is, though, that the positive rates VIP Dx reported in its testing of putative CFS patients somehow around 50% as I remember- are lower than Dr. Cheney appears to be finding in family members and exposed controls without CFS (but perhaps with other problems)or maybe it isnt CFS being such a vague category. Dr. Komaroff reported recently that a significant percentage of people diagnosed with CFS by primary care doctors dont appear to have it thus a certain portion of people that the VIP Dx may not have it whatever it is
  
  . In any case, the high rates of XMRV postive patients in Dr. Cheneys practice vs the lower rates in VIP Dx at large are yet another small but perhaps telling validation of the WPIs initial results because if XMRV is a more or less CFS-centric bug then we would expect higher rates in Dr. Cheneys practice than in other practices that do not focus on CFS.
  What we dont know, from this short excerpt, is what Dr. Cheney or VIP Dx considers a positive antibody result. When you get to the level of clinical testing a single positive result is never considered determinative its always backed up another positive test. Dr. Singh in her patent application requires two positive antibody tests for a sample to be considered positive. Determining what combination of tests will, in the end, constitute a true positive is a thorny issue, one that the BWG will have to grapple with at some point.
• Blood Working Group Meeting - Put it on your calendar Dec 14th/15 Dr. Mikovits said the BWG hoped to be complete with Phase II by this meeting. Hopefully theyll be able to meet this target.The Group put together a summary of Workshop that included sections on both the positive negative studies and which included this interesting line. In contrast to the previously reported findings of close genetic relatedness of all XMRVs in patients with CFS and in PC from different geographic regions the amplified gag gene sequences revealed a genetically diverse group of MLV-related viruses How odd that the more widespread group had less genetic variability than the localized group.Its another XMRV oddity, for sure, which presumably has something to do with the different testing methodologies. In any case the BWG appears to have fully incorporated the Alter/Lo and Hansen studies into their protocols they are now looking for MLVs -not simply XMRV.
  They are, of course, not alone the Alter/Lo paper shifted the ground on XMRV Dr. Mikovits Dec 2nd talk in Norway (what a pleasant place to visit in Dec!) will be on XMRV and other MLVs in ME/CFS.
  The BWGs conclusion was that everythings is about as clear as mud but! we are working on it.. The science of MLV related viruses in humans is still evolving. While many laboratories have detected MLV-related sequences in prostate cancer samples, others have not. The frequency of positive samples varies widely between laboratories. There is controversy about the detection of MLV-related sequences in CFS with the majority of laboratories failing to detect MLV sequences. There are ongoing studies to determine whether technical issues, such as extraction methods or primers and/or subject selection including clinical criteria and geographic issues might influence the detection of MLV sequences.
  Of course we expect clarity and are disappointed (and worried) and if its not forthcoming. In a recent Newsweek article Dr.. William Schnaffner, an infectious disease specialist, suggested that we should neither expect clarity at this point or be disappointed that it has not appeared Cutting-edge science is often not definitive, says Dr. William Schaffner, an infectious-disease expert at Vanderbilt University School of Medicine. Keep your seat belts tight.
• That Newsweek Article - is empathetic and well-written and well worth reading. In it Dr. Andrew Mason, after referring to the battle over decades long battle over the cause of ulcers, argues that anti-retroviral trials are the the only way to win this battle. Dr. Lipkin would not agree stating Patients are clearly ill and suffering, and we need to address treatment as rapidly as we can. But the first order of business is to determine if the association is real. Dr. Lipkin is clearly intrigued by ME/CFS he is engaged in two studies but it took the NIH almost a year to get his study off the ground hardly a sign that theyve been working as rapidly as possible. Still, when they did get into gear they did so in big way hiring one of the top pathogen detectives to lead the search.
• Dr. Deckoff Reports http://treatingxmrv.blogspot.com/ meanwhile Dr. Deckoff and her daughter continue to slowly improve. Its not dramatic..its slow drips over time that she notices over the months rather than the days. They are charting functionality using the Karnovsky Index and both have pushed past 80 for the first time. One of the surprising benefits for her has been a reduction in peripheral neuropathy (nerve pain) that can be very painful.
• Test Results - meanwhile there have been a flurry of test results on the Forums. Several people received positive results by culture and negative results by serology at VIP Dx rather the opposite of what one might expect at first but perhaps suggesting a poor immune response to the virus (or an antibody test that needs some improvement). Another person with milder CFS (myself) tested positive by culture (it took a long culture) suggesting that viral loads were really low and I but had a strong antibody test which I was told could be protective (which might be why viral loads are so low???). I had gradual onset and Dr. Mikovits noted that others with gradual onset have tested positive. There appear to be several different variations and the science, of course, is still evolving One of Dr. Petersons patients who tested positive by WPI tested negative by Dr Jay Levy a virologist who was associated with CFS in the early days.

 

[Bob]

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?

 

[Cort]

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:

 

[Cort]

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

The latest from the Buzz

American Red Cross Says No to Possibly Dangerous ME/CFS Blood - Citing recent studies suggesting that XMRV may, in fact, really be present in CFS, the American Red Cross banned people with ME/CFS from donating blood. Why does a Red Cross ban of CFS blood make the newspapers? Because, as the Red Cross website puts it “Some four million people give blood—the gift of life—through the Red Cross, making it the largest supplier of blood and blood products in the United States.”

The Red Cross Ban leaves the FDA and the American Association of Blood Banks (AABB) looking a little isolated, what with Canada, Australia the UK and now the biggest single blood donation organization in the US, all turning their thumbs down on the prospects of people with CFS giving blood.The Red Cross cited the AABB’s ‘active’ discouragement of people with CFS giving blood by asking people with CFS who are not ‘feeling well’ that day not to give blood but went further, stating that ‘in the interest of patient and donor safety” they will ‘indefinitely defer’ anybody who has been diagnosed with chronic fatigue syndrome.

However the Red Cross will not specifically ask people if they have CFS; instead, if during the general health questioning, if the donor volunteers that they have CFS, they will not be allowed to give blood (thanks to Jennie Spotila for the clarification). No group in the US has taken the apparently extreme step of actually asking their blood donors if they have been diagnosed with CFS.
Patient Campaign to Stop Blood Donations….Just Revved Up…hmmm - The Press Release came just a couple of days after a new patient protest campaignfocusing on getting, ahem, the Red Cross and the FDA to ban blood from ME/CFS patients got started. Rivka reported that the Red Cross told her the decision was made in October….(but it took a while to write the press release? Or to teach their facilities how to ask “Have you been diagnosed with CFS?” Whatever happened patient action does help. Check out Rivka doing some action of her own in the front of the Red Cross Building in the campaign video.

'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.

 

[Mark]

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.

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.

 

[Bob]

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 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.

 

[Jemal]

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.

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.

 

[alex3619]

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.

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.

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

 

[shannah]

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.

 

[Mark]

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....

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?

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.

 

[George]

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.

 

[Recovery Soon]

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..

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.

 

[Recovery Soon]

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.