*NEW* information from WPI (30th March)

[parvofighter]

Thanks Tina

Agree Adam, this was a wonderful summary.

Re: Mantle Cell Lymphoma and ME/CFS. It appears there has been formal work on this for some time.
From: http://www.wpinstitute.org/news/news_current.html

INIP award

September 8, 2007: NCI CCR (Ruscetti)/NIA (Taub) proposal submitted to the Integrative Neural Immune Program's Intramural Research Award competition, entitled "Role of Chronic Inflammatory Stimulation by Active Herpesvirus Infection in Development of Immune Dysfunction and Mantle Cell Lymphoma in Chronic Fatigue Syndrome Patients", unanimously considered by the ad hoc reviewers and the INIP IRA subcommittee as a project that will yield important new interdisciplinary research findings. The award provides a postdoctoral fellow for 3 years to work on the Project with Dr. Ruscetti and Dr. Taub and WPI.
​

Award date Sept 8, 2007. 3 year postdoc funding. Does that mean that we can expect potentially published results around this Sept, 2010? Was the research 3 years long, or have they completed the research, and the postdoc is now helping them write it up and submit it for publication? Or have they already submitted it, and publication is part of that April Surprise? After all, Doc Peterson did report those prelim results at the CFSAC. Anyone?

What exactly causes the cancer?
In HIV it appears (some of?) the cancers are caused by the particular breed of opportunistic infections one gets. Is this the same thing with XMRV? Do patients develop cancers dependent on their opportunistic infections? But then remember there is evidence to suggest that XMRV itself is oncogenic (prostate cancer). Is it a synergistic situation? Or do all 3 premises hold with XMRV:

• XMRV itself causes cancer (eg. prostate)?
• (Some of?) the opportunistic infections, allowed to persiste because of the underlying XMRV retroviral infection - cause cancer. So if you have active and persistent Herpesvirus infection, whether or not you have XMRV, you might get Mantle Cell Lymphoma?
• The combination of XMRV and opportunistic infections causes get unique or more powerful cancers?

The silver lining in the cancer connection is that it DID get the NIH's National Cancer Institute very interested. Remember Stuart LeGrice's comment cited in the Wall St Journal:

“NCI [National Cancer Institute] is responding like it did in the early days of HIV,” says Stuart Le Grice, head of the Center of Excellence in HIV/AIDS and cancer virology at NCI
​

http://online.wsj.com/article/SB125501227713473525.html
​

Remember also that closed-door meeting at the NCI in July 2009 to discuss the public health implications of XMRV. Given that Dr Peterson reported the preliminary lymphoma results at the CFSAC, it is possible that NCI was interested not only in the preliminary Science results on XMRV/CFS, and the prostate cancer link, but also the developing Mantle Cell Lymphoma study results. Either way, it would appear that they are "on it".

Another silver lining is that if they do make the link between CFS and lymphomas - entirely consistent with a retroviral pathology - we'll then have the voice of the cancer lobby to support our fight for robust biomedical diagnostics and treatment.

​

 

[Mark]

Proof, Positive

I think the point is that people made assumptions when they should not have. A scientist checks those assumptions before proceeding.The scientists here did not: they made two and two equal seven.

They normally say that 'assume' means making an ass of u and me.

In this case, the ass is nothing to do with u or ME, but describes them perfectly.

:victory::victory::victory:

I hope you don't mind my slight modifications to your spelling and grammar Gerwyn?

Actually I've lusted after a job as your proof-reader for some time now. If I had unlimited time available, I'd have been doing this already. Who knows how many more people would be hanging on your every word if your posts were translated into English?

And can I put in a word here for the general concept of us all doing similar for the most important posts we read?

We can't edit another's posts, and we don't yet have the wiki-like functionality that would help us to collaborate on our outputs, but we can make a start. We might need to have some sort of conventions so we don't all work in parallel on the same post, and disputes over the correct/best re-wordings, colour schemes and designs could be tough to resolve. Still, I think something along these lines could really progress what we're all doing here to an even higher level of excellence, and it could be crucial in helping getting our messages across to the wider public.
​

 

[V99]

Sorry if I'm being a bit dim, but is the INIP award a new item on the WPI news page?

 

[Gerwyn]

you can have the job as my ,much needed,proof reader any time.

 

[Mark]

On Cancer

What exactly causes the cancer?
In HIV it appears (some of?) the cancers are caused by the particular breed of opportunistic infections one gets. Is this the same thing with XMRV? Do patients develop cancers dependent on their opportunistic infections? But then remember there is evidence to suggest that XMRV itself is oncogenic (prostate cancer). Is it a synergistic situation? Or do all 3 premises hold with XMRV:

• XMRV itself causes cancer (eg. prostate)?
• (Some of?) the opportunistic infections, allowed to persiste because of the underlying XMRV retroviral infection - cause cancer. So if you have active and persistent Herpesvirus infection, whether or not you have XMRV, you might get Mantle Cell Lymphoma?
• The combination of XMRV and opportunistic infections causes get unique or more powerful cancers?

I recently read about some new research into lung cancer whose basic point seemed to be that millions of mutations of millions of cells over the course of a lifetime are necessary to reach the critical mass that triggers a runaway process. The mutations can be caused by all kinds of things, like smoking, viruses, radiation...anything that can interact with DNA, which means pretty much anything I guess.

Since that's basically what I've believed for a decade or two, I was chuffed to see science catching up, and I love to see anything peer-reviewed that confirms my own prejudice. I think this analysis is basically the answer to the question "What is cancer?".

It seems clear that XMRV is just another carcinogen to add to the list. How powerful and dangerous a carcinogen it is, is a numbers game. Since there's clearly already some CFS research on this question to draw on, we should be able to get a sense of the answer to that by analysing that research. However that will still be framed in terms of "x% of people with CFS will develop cancer" which, if you think about the above mechanism, is a misleading way to think about it. The way to think about it is in terms of how frequently an individual's cells are being mutated by each particular trigger, how fast each carcinogen is taking them down the road to catastrophic genetic failure, what is the entire range of carcinogens they are exposed to, which part of their body is winning the race to inevitable eventual cancer, and whether they die of some other cause before the cancer is detectable.

Compared to that way of thinking, the crude percentages we use to think about these things today are pretty pointless, because all the data only holds good for the past: in the future, our environment will be totally different and the numbers will work out differently, so all our predictions will be wrong.

For each of us, we don't yet know whether the carcinogenic effect of our XMRV infection is more powerful than the carcinogenic effect of the air pollution in our local street.

But at least we know what's making us sick, and now we know what cancer is, so that's got to be a good thing.

Having thought all that through, I feel a bit more at piece with the cancer news, because I remind myself that I've also believed very strongly for years that cancer is basically another word for death, at the biological level, and that since death is by definition an inevitability for all life, while it's rational and inevitable for a living thing to fear death and seek to postpone it, it's not very reasonable to seek to End Cancer unless you're gunning for immortal life. One of the main reasons that cancer has increasingly become the excessive obsession of healthcare and medical research policy is because that policy is increasingly driven by the priorities of the influential rich who get to decide what's most important, and the super-rich billionaires like Larry Ellison of Oracle who have everything they could possibly wish for have nothing left to strive for except Immortal Life. Ellison, I'm told, explicitly drives the funding of cancer research (using all the money he stole from the poor, who would have had different priorities) because he wants to live forever. I don't want his ilk, the tiny handful of criminal sociopathic parasites who leech off the starving billions, to be the ones who get to live forever, but it currently appears to be the inevitable pattern of the future unless and until a new way of organising society can be found by the masses.

We'd have known all of this years ago of course, and general healthcare knowledge would already be light years ahead of where it is now, if we weren't approaching every question in life with the exact opposite of humanity's rational priorities. It's been especially damaging in the cancer field that Sir Richard Doll allowed himself to be funded secretly by the chemical industry - and probably by big pharma as well - to ensure that the only question that global cancer research was allowed to explore was "How can we treat it?" - based on the advice of the man who discovered the link between cigarette smoking and cancer that it was pointless and hopeless to look for any more of the causes of cancer like...er...synthetic chemicals...and we should instead establish firmly that Smoking Bad M'Kay? and then move on to look for ways of making money out of cancer - whoops, sorry, I meant to say "compassionately caring for those stricken by it".

(Doll is dead now btw, so his children have got all the chemical blood money, and it wouldn't be fair to take it on them since they had no hand in the decision - though it might be a good idea to try to get all the money back...assuming of course that our utopian future includes money...)

Ah well: the pattern of it all is so beautiful and fractal, who am I to question God's design? Just seems to be the way life is commanded to be: fight it out, rise to the top, and wage war from the top of the pyramid on the rest of existence, until eventually you win the final victory over the life that has created and sustained you, and you get to be the ultimate BIG BOSS. All by yourself.

Sounds like a plan - ghastly though it sounds to those who believe that things like community and fellowship and companionship and all that commie crap are the truly worthwhile things in life: in the end, as in the beginning, there will be only one. Is all that TRUE, or is it just propaganda? I dunno...

So that's cancer for you. Any other questions?

 

[Mark]

You can have the job as my - sorely needed - proof reader, any time, if you're sure you can spare the time and energy to do it, which of course you can't but hey...whoah, what's going on now Mark, you're putting words into my mouth, that's quite a different matter, I never said any of this - people please note, I didn't really say all this at all, Mark is just making it up...make him stop, somebody...

Wicked, I got another voluntary job! I love volunteering! PM me when you've got something important and I'll do my best.

 

[starryeyes]

Thanks teejkay,
There's so many different strands of information about the Science study that, unless I make notes as I come across new info (which I don't), it's impossible to remember what I've heard, seen, read etc., and who said it, when they said it, what the source of the info is... etc. Especially when so many rumours and so much mis-information have been spread around about the Science study, including by some of the UK scientists.

I'm laughing hard as I'm reading this because I can totally relate! We all help each other here.

 

[starryeyes]

I don't know if I'm mis-reading your comments teejkay, but they seem rather harsh on Esther.

To be fair to Esther, the comments were clearly meant in a light-hearted, humorous way... They obviously weren't to be taken seriously, and they were not meant to detract from the discussion.

It was a response to the comment that we shouldn't be "afraid about the cancer information"... Esther is expressing that he is not going to be personally downtrodden by any fear relating to the cancer information... good for him!

I think we'd all agree that ME/CFS is a serious illness, and that it's very harmful...
But I think that, before we start giving cause to people to be fearful about the risk of cancer, maybe we should have some solid statistics about this risk of cancer?... I don't know if there are any?

I don't know the answers either. That was very sweet of you to explain Bob. I can see your point. I'm sorry if I was too strong with my wording. I should have asked Esther for further clarification.

 

[starryeyes]

Hi Mark,

I didn't expect you to take that so hard. I seem to have offended you. I never meant to. You do agree that there are people here who don't support the WPI right? Or do you think that everyone does? I think some don't and with brainfog it can be difficult to keep it straight as to where people stand.

I'm asking myself if I would be offended if someone said that to me. I don't think so. I'd think they were just confused and had realized that I am.

 

[Mark]

Hi Teejkay,

The words I used were "jarring" and "upsetting". I guess I knew I shouldn't have said "upsetting", it implied too much emotional impact. To clarify, I was not at all offended. Better words might be "amused" or "stimulated". I am grateful to you for the insights I got from thinking about all this, I really am. along with all those other posts, it helped me see this pattern of how we all fit the evidence in based on our prejudices, and how that is the dynamic in all these different confusions. So I wanted to be helpful to you in suggesting to you the implications of your error, and I ended up going on about that point a bit too much, perhaps; the wider points were more important really, the way that all those things come together help me to see the truth of things with regards how misunderstandings arise, and thus help me to work out who is right and who is wrong in an individual case. It was all a bit of a revelation. I will add the insight to my new unpatented technique of fractal reasoning about the objectively unknowable.

I know of course that there are people here who have a completely different view of the WPI than I do. I wish there were more, actually, so I could get to work on them, I know they are out there and I think it would be better if a few more of them were in here. It's just that I was amazed that after quite a while on the forum together you seemed to have so little understanding of my views. I had thought I'd been doing a job defending the WPI, so it's a pause for thought if that hasn't been visibly the case.

I read all your posts when I come across them teejkay, just as I carefully read everyone's posts on subjects I'm following, I'm interested in what everybody has to say. So I'll finish by saying that I've lately been warming more and more to the truth of some of the arguments you have made in the past, arguments that didn't convince me a few months ago. The quotes in your current sig, for example, are pretty hard to dispute as a truly "epic fail". I have actually completely misjudged you myself, teejkay, I have formed impressions about you in the past (unvoiced because they were tentative), that I now know to be inaccurate, and that has undermined my acceptance of some of the more radical truths you have expressed. I don't want to say more about my old erroneous impressions, just to say that I'm delighted that we both now understand each other a lot better.

No offence taken, mate. Anybody wanting to try to offend me would be taking on quite a job. But there's a first time for everything...

 

[justinreilly]

77 of the 202 in the Tahoe cohort got otherwise exceedingly rare b-cell lymphomas?

I am particularly interested in study's of long term CFS/ME patients. Of the original 202 patients cared for by Dr. Peterson in Incline Village 77 went on to develop B cell Lymphoma which is what my mom died of after years of illness.

George, I am very sorry to hear about your Mom.

I had no idea that 77 of the 202 in the Tahoe cohort got b-cell lymphoma! I thought it was more like 20; although even 20 is astronomically high considering that, according to Osler's Web (p.92) before AIDS and ME, these b-cell lymphomas were exceedingly rare in the U.S.- something like 10 cases of Burkitt's lymphoma (which accounts for the majority of ME-related lymphomas) a year in the whole U.S. !! Can you point me to where you got this info? Thank you!

 

[Gerwyn]

wpi facebook

 

[VillageLife]

How does anyone at the WPI sleep?!

 

[Bob]

How does anyone at the WPI sleep?!

Judy Mikovits is superhuman of course... she is a superhero and she doesn't need sleep... well, that's the only way I can make any sense of it anyway!

 

[justinreilly]

wpi facebook

Hi Gerwyn-

I assume you were replying to my request for from where the 77 lymphomas info came. I searched WPI's facebook and couldn't find anything. Do you remember with more specificity?

 

[Robyn]

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[Mark]

We are not living in the dark ages anymore

?

Sun's coming up now anyway...

 

[Bob]

It just outrages me at the blatant disregard for humanity that has been bestowed on human beings by the medical profession in regards to these conditions. Although it seems that history has repeated itself over and over when something is not understood. All we have to do it look at MS, Parkinson's and Epilepsy as examples. All were considered "hysterical" afflictions and these poor people were sentenced to a life in mental hospitals until a test was found. We are not living in the dark ages anymore, this is the year 2010. I cannot believe this is still happening in this day and age. It's all because of the greed to keep pushing the pysch pills, and to deny people of their right for proper medical care, and basic living expenses that they have paid into their whole life. What do they think gives them the right to treat people this way.

Well said Robyn!

 

[Gerwyn]

Wicked, I got another voluntary job! I love volunteering! PM me when you've got something important and I'll do my best.

you s**:innocent1:

 

[Gerwyn]

Hi Gerwyn-

I assume you were replying to my request for from where the 77 lymphomas info came. I searched WPI's facebook and couldn't find anything. Do you remember with more specificity?

sorry i have just seen your post i will dig up the info