Dr Singh's XMRV Patents: Something for Dr Lipkin -and the NY Times- to chew on

[Lynn]

My neighbor was treated for breast cancer with radiation last year. She did not opt for the chemo-therapy. She has still not regained her energy. Her husband was diagnosed with Parkinsons the year before.
Perhaps it is all XMRV?

Hard to say. i don't think I will be suggesting it to her.

Lynn

 

[Jemal]

Some people, on the other hand, experience remission from ME/CFS after chemotherapy. And chemotherapy is one of the treatment options currently being explored.

Chemotherapy is also used as a possible treatment in autoimmune disorders. The idea is that the immune system takes a hit and relaxes. As our illness resembles an autoimmune disorder, it makes sense they are considering this treatment option. The question is though: is our immune system helping us or not?

 

[LJS]

I find the 25% strangely coincidental with the numbers for Post-chemotherapy cognitive impairment (PCCI)

From the wiki page

Approximately 20-30% of people who undergo chemotherapy experience some level of post-chemotherapy cognitive impairment.

and this is what made my mouth drop

While any cancer patient may experience temporary cognitive impairment due to stress, fatigue, and depression, the long-term symptoms of PCCI are almost exclusively seen in patients treated for breast cancer, ovarian cancer, prostate cancer, and other cancers of the reproductive system.

 

[Jemal]

That last bit you dug up LJS is kinda scary... lots of coincidences... maybe too many.

Also I read that Wikipedia article and one of the treatment options for these ex-cancer patients is: cognitive behavior therapy. We are not the only ones to suffer it seems.

Another interesting tidbit in that Wikipedia article is that estrogen will frequently reverse the symptoms. Estrogen has strong anti-inflammatory properties.

And finally, the Wikipedia article mentions that these patients get treated with Ritalin sometimes. This is also a treatment option for CFS patients, at least here in the Netherlands.

 

[acer2000]

Hi Diesel and everyone, something has been bugging me for some months, and this is a big piece of evidence, even if unpublished. Something like one in four breast cancer survivors develop a CFS-like illness, but its not called CFS. Coincidence? You decide.

Bye,
Alex

Where did you read that? FWIW - I have been told anecdotally some lymphoma patients also develop this. They have tried to attribute it to lasting chemo side effects, but its worth looking at again given the info about XMRV. It certainly doesn't happen in all people.

 

[eric_s]

Really scary... this could go anywhere... from being nothing (don't think so), to being the cause of CFS/ME to being something that will lead to a new view of almost anything

 

[acer2000]

Perhaps the 25% of breast cancers are the hormone sensitive types. That would be interesting and make sense given the viruses predilection for androgens. I guess we will find out.

 

[eric_s]

This is just a random thought that came to my mind after reading about the post cancer fatigue (i didn't know this exists before). I don't even really believe in that idea i had myself but nevermind, here it is:
In one study, i think by Dr. Peterson (?), they have found that people who are XMRV+ but don't have CFS are far more likely to develop cancer than people who are XMRV+ and have CFS. So they concluded CFS might be some sort of protective mechanism.
Now what if those people who get XMRV and develop a strong such reaction get the CFS symptoms but not cancer because the CFS (or better the mechanism causing the CFS symptoms) is killing the cancer before it can develop, while the ones who don't get such a strong CFS reaction can't control the cancer development and get cancer. Now if you remove the cancer, the CFS has nothing to fight anymore, so you will feel it, because now it's only attacking other parts of the body, organs like the nervous system, whatever... But it does not go away, because XMRV is still there, so the system feels there's still an attacker there...

 

[George]

Out of 292 of the original Incline Village CFS patients, 77 developed lymphoma. However only one has died.

 

[Cort]

That's very interesting, thanks for pointing that out Alex.



That's not necessarily a flaw, because ME is generally triggered by an event such as stress or exposure to toxins... What worse stress event, and exposure to toxins, is there than a course of chemotherapy... So maybe the chemotherapy is a trigger event for an ME-like illness in cancer patients who carry the XMRV virus.

Well that's a good point....particularly with the hormonal connection to XMRV.....very interesting

 

[Cort]

Out of 292 of the original Incline Village CFS patients, 77 developed lymphoma. However only one has died.

I had no idea it was that many. That's alot of people!

 

[alex3619]

If you are going to post something like this, please provide some kind of reference. What is the point of speculation based on more speculation?

Hi pine108kell, this is a well-known finding, I didn't think it needed evidence. Also, go on any cancer survivors forum and you will see tales of post-cancer fatigue that sound very very familiar to us.

Bye
Alex

 

[alex3619]

If breast cancer is testing at 25% for XMRV, then I think this is about the same as prostate cancer...
I reckon that it might not be a coincidence that they are both the same...
The reasons for them both having a '25%' figure might be related.

Hi Bob, this was my first take too, but on reflection it seems to be more like coincidence. Who knows, maybe it is true, but I would like to see a lot more info.

On cancer survivors and fatigue syndromes, many sound very much like us - doctors are just ignoring them, I mean they survived, what more do they want? Its worth at least investigating I think, especially if further research can show these patients correspond to those with XMRV - which is only speculation at this point of course.

Bye
Alex

 

[helen41]

Fastinating stuff.
The rates for XMRV average out at 25% in prostate cancer, but are actually much higher in the more malignant cases.
Dr Singh writes "19% of patients with a Gleason score of 6, 27% of those with a Gleason score of 7, 29% of those with a Gleason score of 8, and 44% of those with a Gleason score of 9"

I wonder if it will be the case in breast cancer as well, that the numbers jump in the more aggressive cancers

 

[Bob]

Fastinating stuff.
The rates for XMRV average out at 25% in prostate cancer, but are actually much higher in the more malignant cases.
Dr Singh writes "19% of patients with a Gleason score of 6, 27% of those with a Gleason score of 7, 29% of those with a Gleason score of 8, and 44% of those with a Gleason score of 9"

I wonder if it will be the case in breast cancer as well, that the numbers jump in the more aggressive cancers

So I guess the big question is... Is XMRV causing some of these cancers, or is there some other reason that the virus is present in the cancer tissue? It's exactly the same question we need answered for ME... and there's no answers in sight yet.

 

[George]

And we have two tests (WSJ reported one as well) for viral load. Dr. Coffin's complaint for not doing ARV trials was there wasn't an accurate way to test for progress in reduction of viral load. Gee, I feel so lied to.

 

[Megan]

I noticed looking at the patent document that most of the CFS references refer to finding XMRV antibodies in CFS patients rather than nucleic acids or the use of PCR. This seems in contrast to the other cancers she has discussed. I wonder is this part of the complications of her CFS study Cort had posted about in an earlier thread?

 

[Mark]

Wow this thread got awesome fast! The breast cancer link is the big news of the day. Great work by everyone on this thread.

Here's what struck me. I remember Dr. Coffin at the first CFSAC meeting in October of 2009 talking about XMRV in breast cancer. We all thought he simply misspoke. Obviously he didn't. What upsets me is that so much of the work that is going on is hidden from the ME/CFS community but also from the general public.

Great work for remembering this, I had missed that comment of Coffin's. It's a clear smoking gun. Coffin and others have known of a possible link between XMRV and breast cancer for over a year and yet the first we hear about it is from scouring through Dr Singh's patent application a year after his comment slipped out. What a damning indictment of the state of modern science. What an absolute disgrace. Withholding information like this ought to be a criminal act in my opinion. There's a poster on the Bad Science board - very sceptical re: WPI and XMRV - who recently expressed the view that delaying science should be classed as a crime against humanity. Just about the only thing I've found that I agree with him about! I know it's a cultural thing, I know it has to be "the way things work", but I do view it as a crime against humanity. The culture of secrecy and confidentiality around scientific research just disgusts me.

Regarding Alex's post with unreferenced information: the point has already been well made but the "reference" that assured us this was reliable info was the fact that it was Alex who posted it. I guess a lot of scientists coming across this forum may not get that sort of thing, when we discuss science. But screw them and their prejudice, this is a patient's forum after all.

Regarding the number of Incline Village patients who developed lymphoma- indeed that is a phenomenal statistic! I'm amazed that more hasn't been made of this! That's a massive smoking gun, on so many levels. This was the outbreak that led to the creation of the "CFS" label itself! If nothing else, what does it say in terms of vindication that this outbreak has now been proven to be very real and very serious?! What about all those CDC morons who came out to Incline and disrespected all those people, where do they stand now that so many of those people went on to develop lymphoma?! Was there ever any admission that the CDC got it seriously wrong there? Will there ever be such an admission, I wonder?

Just massive stuff bubbling under the surface at the moment. Never mind "bases loaded" ready for a "grand slam", there's waaaay too much lined up for just 3 bases! But like George says, unless and until it's all published, it's all for nothing...I can hardly bear the suspense...

 

[CBS]

I noticed looking at the patent document that most of the CFS references refer to finding XMRV antibodies in CFS patients rather than nucleic acids or the use of PCR. This seems in contrast to the other cancers she has discussed. I wonder is this part of the complications of her CFS study Cort had posted about in an earlier thread?

Here is a quote from Dr.. Singh's patent app:

Similarly, to detect if patients with Chronic Fatigue Syndrome have evidence of XMRV infection, we collected sera from 105 patients diagnosed as having chronic fatigue syndrome and fulfilling the Fukuda criteria for diagnosis. For comparison, we also collected sera from 200 healthy volunteers. Each of these sera was used to probe a PVDF membrane onto which XMRV proteins had been transferred from a gel. A positive sample usually contained antibodies reactive to at least two of the following three XMRV polypeptides: SU, CA and pi 5E (see Fig. 13A). Non-reactive samples (most healthy volunteers) did not contain antibodies to SU or pl5E (Fig. 13B). Antibodies to CA alone, however, were quite prevalent in the healthy volunteer population, and are not to be interpreted as evidence of XMRV infection. [0135] A potential testing algorithm for determining the presence of XMRV antibodies includes a highly sensitive screening test to identify all potential positives (such as the ELISA test), followed by a highly specific test (such as the Western blot) to eliminate the false positives.

She's clearly thinking that multiple test will be required to maximize confidence in the sensitivity and specificity of XMRV testing in CFS.

 

[currer]

Out of 292 of the original Incline Village CFS patients, 77 developed lymphoma. However only one has died.

HI
Sorry George, as I remember it wasn't 77 with lymphoma, it was 77 with clonal T cell rearrangements.
This is a change which may be a precursor to lymphoma. Not so scarey!