• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Q and A with DR. ILA SINGH about her XMRV ME/CFS study, at CFS Central

heapsreal

iherb 10% discount code OPA989,
Messages
10,086
Location
australia (brisbane)
testing and treating cfs isnt about health and seems to be more about politics, ego's and money, even research grants. The deeper we look the more we find this seems to be the case????
 
Messages
19
Location
SW Idaho
insearchof said in one of the many illuminating paragraphs that:

If Singh was sincere, she should have said her study did not find it in the blood but that did not mean that it might not be elsewhere - especially given the monkey study, that she had found XMRV in tissue (albeit in another patient group) and given general science regarding limitations of serology in detecting viruses well after infectious onset.
I find insearchof's comments very astute.

For those like Singh-they know the money-future money-is in Cancer research, she is going for the BIG BUCKS. If it takes turning her back on the retro-virologists, virologists, immunologists, etc., it is okay for her. Even to the point of saying anything she thinks those money givers want to hear. She didn't need to actually state that she decided XMRV isn't the right alley to look for the cause of ME/CFIDS-that is overkill, and alienates many people. Yes. Where did she think the tumors come from, eh? as pointed out by many of you. Silverman's team and others made that connection, did the underpinnings long ago.

I don't see the "contaminated reagent" thing here for WPI's lab-they were careful to go from scratch, and constantly checked. So Singh can't explain it-uh huh. She found the robot problem, sure. Maybe her reagents had some problems, but not the WPI study nor Alter-Lo's. Singh really went for overkill-unnecessary-by choosing to say dismissive things, without backup, and try hard to make questionable back-up.

WPI already knew about the Prostate and Breast Cancer connection- and it had already been done in many ways via the Silverman lab (and I, by the way again, am glad Silverman et al redid the Macaque work! They should feel relieved again). I thought her numbers were low. However....

Lotta holes in Singh's work-as far as drawing conclusions out of the air. It takes away from some good work. I was put out she would be so suddenly dismissive. But then, she feels, I believe, that she needs the distance in order to get the big bucks and I think that she sees making such comments will surely get her, and the University, those grants. That she stated peremptorily that using anti-retrovirals should not be done, that was ignorant, dismissive and even cruel. That is so like what the group meeting early on came up with too in their "agreement" which not everyone attended nor was in agreement with. No basis, just that her stuff and her comments are the "it" in "dunk it". Irritating.

G'night everyone. Will be back to hear more. Thanks for permitting me to vent, a bit.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,086
Location
australia (brisbane)
insearchof said in one of the many illuminating paragraphs that:


I find insearchof's comments very astute.

For those like Singh-they know the money-future money-is in Cancer research, she is going for the BIG BUCKS. If it takes turning her back on the retro-virologists, virologists, immunologists, etc., it is okay for her. Even to the point of saying anything she thinks those money givers want to hear. She didn't need to actually state that she decided XMRV isn't the right alley to look for the cause of ME/CFIDS-that is overkill, and alienates many people. Yes. Where did she think the tumors come from, eh? as pointed out by many of you. Silverman's team and others made that connection, did the underpinnings long ago.

I don't see the "contaminated reagent" thing here for WPI's lab-they were careful to go from scratch, and constantly checked. So Singh can't explain it-uh huh. She found the robot problem, sure. Maybe her reagents had some problems, but not the WPI study nor Alter-Lo's. Singh really went for overkill-unnecessary-by choosing to say dismissive things, without backup, and try hard to make questionable back-up.

WPI already knew about the Prostate and Breast Cancer connection- and it had already been done in many ways via the Silverman lab (and I, by the way again, am glad Silverman et al redid the Macaque work! They should feel relieved again). I thought her numbers were low. However....

Lotta holes in Singh's work-as far as drawing conclusions out of the air. It takes away from some good work. I was put out she would be so suddenly dismissive. But then, she feels, I believe, that she needs the distance in order to get the big bucks and I think that she sees making such comments will surely get her, and the University, those grants. That she stated peremptorily that using anti-retrovirals should not be done, that was ignorant, dismissive and even cruel. That is so like what the group meeting early on came up with too in their "agreement" which not everyone attended nor was in agreement with. No basis, just that her stuff and her comments are the "it" in "dunk it". Irritating.

G'night everyone. Will be back to hear more. Thanks for permitting me to vent, a bit.

U know i think if xmrv or even another cause of cfs is found, there will be money to make out of cfs, maybe more then some other diseases. I think alot of other conditions may have been wrongly diagnosed as something else, maybe MS etc that may turn out to be me/cfs and i think alot more people out there with cfs/me that havent even got a diagnosis for anything yet and these people may come forward and get diagnosed and treatment. Plus treating cfs may also lower cancer rates and other disease that are brought on by cfs.

cheers!!!
 

eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
I agree with you Heapsreal. Maybe at the moment it's hard to get grants for ME/CFS, but if XMRV/MRV were to be confirmed and there was no more resistance there would seem to be incredible money to be made there.
 

insearchof

Senior Member
Messages
598
U know i think if xmrv or even another cause of cfs is found, there will be money to make out of cfs, maybe more then some other diseases.

Unfortunately, to get to that point Heaps, the research has to be done first......and
freewindblowing is right, the money is in cancer *research*

Government grants and private funds are the life blood of a researcher.

How much government funding have we seen...or private funding on any level for that matter, in CFS?

There is no shortage of government or private funding for cancer research.

Given discrepancies in the Singh studies that she cannot apparently explain herself, her remarks made since in various media sources, are objectionable and I would go as far as saying premature and irresponsible.....especially suggesting that there is nothing more to see here and that science move on and that ARV meds not be given to patients. I didnt know Dr Sing was in the same league as Dr Klimas.....a researcher and ME CFS physician.
 

Cort

Phoenix Rising Founder
The answer according to Singh, is quite obvious. Prostate cancer and Chronic Fatigue Syndrome are two different illnesses.

But of course, she did use different methods and assays for her CFS study ( on the basis of her own admission)....though you wonder why there was need to reinvent the wheel when it was successfully employed elsewhere.

I love her flawed scientific view, that if you can't find XMRV in the blood, then there is no reason to look for it in the tissues. Maybe she never read the Monkey study that showed XMRV does not always show up in the blood....but will still be found in the tissues.

I look foward to the XMRV serology findings on prostate cancer cohorts.

for these reasons I do not think she is as impartial as others are suggesting. If she was, more reasonable or qualified comments would be expected.

Very disappointing for a lot of people, I am sure.

If what she is suggesting is correct - that the entire Science study is absolutely wrong - then I think she's being completely logical; why would she suggest that you look for XMRV in the tissues of people with CFS if there's no evidence that its there. She would actually be 'partial' if she suggested otherwise.

Chia was very different; he was able to find enteroviruses in the blood of people with ME/CFS - he simply found that it was easier to find it in the gut tissues. There was a logical line from the blood to the gut. Dr. Singh has not found that line....

She'd give you the same answer if you asked her to look for in the tissues of people with pancreatitus...she would say "where's your evidence for it being there?"
 

Cort

Phoenix Rising Founder
U know i think if xmrv or even another cause of cfs is found, there will be money to make out of cfs, maybe more then some other diseases. I think alot of other conditions may have been wrongly diagnosed as something else, maybe MS etc that may turn out to be me/cfs and i think alot more people out there with cfs/me that havent even got a diagnosis for anything yet and these people may come forward and get diagnosed and treatment. Plus treating cfs may also lower cancer rates and other disease that are brought on by cfs.

cheers!!!

Absolutely....There's alot of money to be made treating any large population of chronically ill people.
 

liquid sky

Senior Member
Messages
371
If what she is suggesting is correct - that the entire Science study is absolutely wrong - then I think she's being completely logical; why would she suggest that you look for XMRV in the tissues of people with CFS if there's no evidence that its there. She would actually be 'partial' if she suggested otherwise.

Chia was very different; he was able to find enteroviruses in the blood of people with ME/CFS - he simply found that it was easier to find it in the gut tissues. There was a logical line from the blood to the gut. Dr. Singh has not found that line....

She'd give you the same answer if you asked her to look for in the tissues of people with pancreatitus...she would say "where's your evidence for it being there?"

She cannot on the basis of her study claim the Science study is absolutely wrong. That is a huge reach. Tests have not shown that people with pancreatitis are infected with HGRV's. Multiple studies have shown that PwME are infected.

What would it hurt to look in tissues of PwME, if they are willing to undergo such studies. Maybe they are afraid they will find something? Like they have in prostate cancer?
 

insearchof

Senior Member
Messages
598
If what she is suggesting is correct - that the entire Science study is absolutely wrong - then I think she's being completely logical; why would she suggest that you look for XMRV in the tissues of people with CFS if there's no evidence that its there. She would actually be 'partial' if she suggested otherwise.

Chia was very different; he was able to find enteroviruses in the blood of people with ME/CFS - he simply found that it was easier to find it in the gut tissues. There was a logical line from the blood to the gut. Dr. Singh has not found that line....

She'd give you the same answer if you asked her to look for in the tissues of people with pancreatitus...she would say "where's your evidence for it being there?"


Hi Cort

The key words in your post are: ''If what she suggests is correct...."

But the study, as extensive as it was - is not a replication study of WPI work. It also used different methodology from Singhs previous studies. We have one of those strange 0:0 results and she can't explain the 4% finding in controls in her prostate cancer findings and the 0 finding in controls in the CFS study.

Hard to see, with the growing criticisms of this study, how it is going to prove anything wrong, let alone WPI study - especially given it was not a replication study. What this study might show though, is how you can run a very elaborate and ambitious study and still not be able to find XMRV that others have successfully found (not just WPI, Lo Alter - but others who are trying to get their studies published)

As for John Chia Cort, he has said that he had to repeatedly do serology to get a positive finding for enteroviral infections. In fact, unless I am mistaken -I think I read that in the interview you obtained from him.

So the starting position is - that after a certain point of time after infectious onset, enteroviruses cannot be found in the blood. However, I take your point - that yes they have been found there before which justified Chia exploring tissue. Then again, so too has XMRV in both humans and monkeys and the monkey study showed that like enteroviral infection, it does not hang around in the blood very long after infectious onset.

I agree though, Singh - if she could not find it in the blood - would not personally be motivated to go looking for it in the tissuses. Why would she, and especially after such an extensive effort that failed. Cannot blame her for not being keen to do so.

What is objectionable though, is the inference that there is no evidence to support anyone else doing so and accordingly, science in general should move on from XMRV in CFS.
 

insearchof

Senior Member
Messages
598
Absolutely....There's alot of money to be made treating any large population of chronically ill people.


It means squatt - if there is no money going towards research to get the findings, which give rise to treatments. And there has been squatt given to ME and CFS research in the last 25 years. Even in the face of the XMRV finding - still squatt.