*2 new* letters, Myra McClue, Annette Whittemore

[anciendaze]

...Exogenous retroviruses form part of our intrinsic defence sysyem so they are activated during any viral infection especially when there is a exogenous retroviral infection.yes I know about herv k .Old news i,m afraid a herv cannot cause a multsystemic disease.All exogenous retroviruses function to a geater or lesser degree as gene regulators.Dont let their "simplicity " fool you.

I'm assuming you meant endogenous in the first instance above.

As for the claim "a HERV cannot cause a multisystemic disease", I would echo a Scottish jury with 'not proved' in place of 'not guilty' ". Large parts of the genome appear to be primarily regulatory in nature. There are complicated diagrams of proposed regulatory interactions. If an exogenous virus is remarkably similar to material previously inserted by retroviruses, I think the distinction between endogenous and exogenous gets pretty thin. The idea of a simple trigger for pathogens from the past could bear on any number of medical mysteries, not just CFS/ME. I'm struck by the enormous amount of information available in "junk DNA" which need not be beneficial to the host, and does not have to be transmitted by an exogenous virus.

Your emphasis on the CREB gene is tantalizing, and I've thought about it a bit. My problem now is that disruptions of something so critical are likely to be lethal, to the cell if not to the person.

I'll need a lie down before I tackle that paper again, to see if I can extract anything useful. (Does it have that effect on you?)

What bothers me about such a blatant difference in sample volume is that I haven't heard Dr. Mikovits and company screaming their heads off over that particular item. This isn't as soft a fact as arguments about cohorts. It is more like saying, "we had 100 subjects in the study, or maybe there were only 10".

Perhaps this kind of question just gets lost in the shuffle while the UK is trying to figure out if anyone is in charge.

 

[PoetInSF]

I was impressed by her compassion for CFS patients in her BMJ editorial, and now I'm even more impressed by her kind and succinctly clear response to an unworthy politicial open letter.

Your suggestion regarding testing of new samples in a confirmatory manner with others in the
United States is already underway at two separate laboratories. Those studies are ongoing and I
am certain that the results will be shared when the studies are complete.

WPI will be better off saving their politics for CDC/NIH when the result comes out. It makes them look insane to go after a respectful scientist who happened to be thrown in this by virtue of being a respected virologist.

 

[Gerwyn]

I'm assuming you meant endogenous in the first instance above.

As for the claim "a HERV cannot cause a multisystemic disease", I would echo a Scottish jury with 'not proved' in place of 'not guilty' ". Large parts of the genome appear to be primarily regulatory in nature. There are complicated diagrams of proposed regulatory interactions. If an exogenous virus is remarkably similar to material previously inserted by retroviruses, I think the distinction between endogenous and exogenous gets pretty thin. The idea of a simple trigger for pathogens from the past could bear on any number of medical mysteries, not just CFS/ME. I'm struck by the enormous amount of information available in "junk DNA" which need not be beneficial to the host, and does not have to be transmitted by an exogenous virus.

In science you need evidence.There is no evidence of an endogenous retrovirus being able to cause any illness yet alone one that affects many systems.Exogenous retroviruses can and do cause mulisystem diseases.The distinction between exogenous retroviruses and endogenous ones is that the former are replicative and the latter not. perhaps you need to do some work on polymorphisms before you comment on regulatory gene dysfunction.Regulatory gene dysfunction is common in many illness phenotypes.You are entitled to your subjective opinions.The problem is however is that they are not based on any scientific fact.If you haven,t heard Dr Mikovitis complaining about the blood volumes then you simply have not been listening!

It isnt the argument about different cohorts that is soft by the way.it is people who believe that the Oxford Criterea and the Canadian Consensus criterea produce the same patient cohorts which are soft(in the head)

 

[Gerwyn]

I was impressed by her compassion for CFS patients in her BMJ editorial, and now I'm even more impressed by her kind and succinctly clear response to an unworthy politicial open letter.


WPI will be better off saving their politics for CDC/NIH when the result comes out. It makes them look insane to go after a respectful scientist who happened to be thrown in this by virtue of being a respected virologist.

Mclure failed to follow a simple scientific protocol, made totally unscientific statements and went after a RNA virus using PCR in blood samples that were not replicating.That is the behaviour of a novice not a respected scientist.A first year microbiology student is taught that you must calibrate your assay against a known positive to make sure it works before using it!

If you saw her words as compassionate then you have a very strange view of the world.

She had to go to Australia to retract both the statements she made in her paper.Did you forget that part?

Did you also forget that the ethics approval for the study was given three months before the Science study was published.Her excuse that she wanted to perform the study to protect people from use of antiviral agents does not hold any water.

What do politicians call it?Ah yes being economical with the truth

 

[Cookie Monster]

I was impressed by her compassion for CFS patients in her BMJ editorial, and now I'm even more impressed by her kind and succinctly clear response to an unworthy politicial open letter.

"-removed - belittling comments about another member - moderator"

 

[jace]

This is off topic, in that it only tangentally connects to McClure and the blessed Annette, but there has been some discussion here about where the funding for weaslie works comes from.

From the Linbury Trust home page http://www.linburytrust.org.uk/

For around 10 years, commencing in the early 1990s, Linbury funded more that 40 research projects into various aspects of CFS / ME (Chronic Fatigue Syndrome / Myalgic Encephalomyelitis). This pioneering programme of sustained support led to great strides in the acceptance and understanding of this condition by both the medical establishment and general public.

Yeah right :Retro mad:

Their 2009 annual report states that they gave a grant of just under 108,000 to Esther Crawley's Lightning Process study in Bath on 90 children aged between eight and 18 which begins in September 2010.

David Sainsbury's sister died in '77, at the age of 39.
Annabel, daughter of Robert, is a founder of AVERT, an HIV/AIDs trust.

Where am I going with this? Follow the money, keeps ringing in my head. Why are the Sainsburys giving money to work which only helps to confirm the bias toward psychological causation and treatment? Might it be that they are misinformed?

 

[Gerwyn]

This is off topic, in that it only tangentally connects to McClure and the blessed Annette, but there has been some discussion here about where the funding for weaslie works comes from.

From the Linbury Trust home page http://www.linburytrust.org.uk/ Yeah right :Retro mad:

Their 2009 annual report states that they gave a grant of just under 108,000 to Esther Crawley's Lightning Process study in Bath on 90 children aged between eight and 18 which begins in September 2010.

David Sainsbury's sister died in '77, at the age of 39.
Annabel, daughter of Robert, is a founder of AVERT, an HIV/AIDs trust.

Where am I going with this? Follow the money, keeps ringing in my head. Why are the Sainsburys giving money to work which only helps to confirm the bias toward psychological causation and treatment? Might it be that they are misinformed?

thank you jace excellent find.they have funded weasley to the tune of four studies a year! Do you know of any connection to the welcome trust?

 

[Adam]

I was impressed that you are now writing in full sentences - thats such a big achievement - congratulations :victory:

ps when you get good at it maybe you can then move on to comprehension and understanding.

I suspect that is a step to far for our resident poet and Judy Mikovits No. 1 fan.

 

[maryb]

removed by moderator - belittling comments about Forum member -even if a member makes provocative statements please do not resort to personal attacks (even if its dififcult ):

Thanks I needed this today after visiting the dentist for the first time in 2 years.

 

[anciendaze]

...In science you need evidence...

While we're on the subject, I made another pass at that damn paper. The place I found the 100 microliter = 0.1 ml. samples and numbers of cells was in the neutralizing antibody section, not PCR.

Their neutralizing antibody analysis showed significant activity to XMRV env material. So they next prepared pseudotyped virus having an XMRV envelope, but different content. Their claim is that this shows the response was due to another virus, assuming their PCR results were correct.

I'm not sure why they expect a strong antibody response to viral material normally hidden from the immune system. My interpretation of their own results is that they stopped just short of the threshold at which PCR could detect XMRV. With the extremely low viral loads suggested by other results, and without cytolysis which could expose unassembled viral particles to immune response, they did not detect antibodies for anything except the envelope.

In a sense, the pieces fit together.

 

[Gerwyn]

what paper are you actually talking about? what viral material is ever hidden from the immune system.Interpretation is not fact I,m afraid.From my perspective your interpretation makes about as much sense as your immunology.Im sorry that you find virology papers so hard to interpret

 

[fred]

David Sainsbury's sister died in '77, at the age of 39.

Elizabeth Clark (nee Sainsbury) died of cancer. A trust was set up in her name which, until 2005, funded research and support for, amongst other things, in-home palliative care.

Annabel, daughter of Robert, is a founder of AVERT, an HIV/AIDs trust.

On her 30th birthday, Annabel famously gave up her 3m inheritance to establish AVERT. It is one of the most used sources of AIDS/HIV information. It started by funding biomedical research and is now focused on HIV educational programmes, mainly in developing countries. Incidentally, Lord John's brother, the late Simon Sainsbury, also donated 100m to HIV research.

Annabel's son, Jason, died of cancer, aged 30. He left his 2.5m inheritance to a charity aimed at helping young people in farming communities. See article below.

http://www.dailymail.co.uk/news/art...llions--just-like-mother-20-years-before.html

Then there is Clare Sainsbury, daughter of Lord David, who has Aspergers but wasn't diagnosed until she was an adult. She has written a well received book about her illness called 'Martian in the Playground' and has used funds from her father to set up CLASS (Cambridge Lifespan Asperger Syndrome Service).

And not forgetting the Sainsbury Mental Health Foundation, the aim of which is to improve the quality of life of people with mental health problems.

Why are the Sainsburys giving money to work which only helps to confirm the bias toward psychological causation and treatment? Might it be that they are misinformed ?

Very possibly. Myra McClure didn't see the psychiatrists coming. Perhaps the Sainsbury Mental Health Foundation hasn't either.

 

[rebecca1995]

I was impressed by [McClure's] compassion for CFS patients in her BMJ editorial, and now I'm even more impressed by her kind and succinctly clear response to an unworthy politicial open letter.

WPI will be better off saving their politics for CDC/NIH when the result comes out. It makes them look insane to go after a respectful scientist who happened to be thrown in this by virtue of being a respected virologist.

Poet,

I just made another donation to WPI in your honor--and I will do so each time you bash the WPI. I hope others will join me. If so, your posts will have a constructive purpose: fund-raising.

 

[Gerwyn]

Poet,

I just made another donation to WPI in your honor--and I will do so each time you bash the WPI. I hope others will join me. If so, your posts will have a constructive purpose: fund-raising.

I love your quote re Reeves and white.I think it may be a misquote.Perhaps it was that" White,s intelligence is unusual it appears to be in reverse"

 

[Esther12]

Poet,

I just made another donation to WPI in your honor--and I will do so each time you bash the WPI. I hope others will join me. If so, your posts will have a constructive purpose: fund-raising.

Could you do the same for me to?

 

[Cort]

From my perspective your interpretation makes about as much sense as your immunology.Im sorry that you find virology papers so hard to interpret

Can we please stop with the put-downs!

 

[Cort]

The assertion that the WPI has alienated the retrovirology research community seems unsupported to me. On the contrary, Mikovits has deep roots in that world and A very warm and long standing relationship with both Frank and Sandra Ruscetti, as well as ongoing support from Robert Silverman.

What they are up against is the ongoing prejudice against the disease. M.E./CFS isn't a legitimate subject of study therefore the Science article must be fatally compromised; it can't possibly be saying what it seems to be saying. I'm sure both Judy and Annette were both terribly dismayed when the taps didn't open and they're experiencing, again as we all are, just how much inertia the demialist view has. It has very little to do with being "nice."

Myra content: Given that Ruscetti is one of the organizers of the upcoming conference, it's a good bet that JM signed off on McClure's participation. And who knows, maybe some cooping is going on.

I think both are true: Ruscetti, Mikovits, Silverman are all bumping up against the bias against ME/CFS and they are astonished and angered by it. That doesn't mean, though, that Dr. Mikovits has played this well in the research community; when Dr. Raccinello - says something like " the WPI doesn't think anyone knows how to do PCR" in public - there's some anger there.

I think both things are true - there really is a big bias against CFS - you could see that when McClure, based on what we know to be tentative evidence, stated there is no XMRV in the UK. That wasn't an objective (or smart) statement given the fact that they did not do a replication study. Ditto with Kuppeveld. The WPI was rightfully upset but I think it would have been better if they had held back more.

Honestly with regard to XMRV I don't think it will matter that much; if (when?) XMRV is found that will be big enough to wash away any problems.

 

[rebecca1995]

[About donations to WPI]

Could you do the same for me to?

Sure, Esther, if I have enough money!

LOL, Gerwyn. The full Reeves quote about White can be found here. (Thanks, Tom.)

 

[anciendaze]

Mea Culpa

Cort,

I'm afraid I made a blunder which provoked Gerwyn. In the course of switching between the four studies available, I got fixated on a problem in the paper by Groom et al. Gerwyn apparently didn't recognize my humble appeals for direction to the source of some information on samples as real. I had pretty well written the Erlwein et al. paper off, and didn't realize I was supposed to be reading that. We were talking at cross purposes, and I was at fault for not catching my error.

I claim no authority in retrovirology, virology, immunology or medicine. My method of learning irritates many because I do make statements that get knocked down, in order to find my weaknesses quickly.

My assertion about neutralizing antibodies could have been phrased as a question: do you accept the argument, in the neutralizing antibody assay section of the Groom paper published in Retrovirology, that the response they saw in healthy controls was due to another virus which happened to have an envelope very similar to XMRV, or do you think this is a cluster infection of people with a healthy immune response to XMRV which was lacking in the CFS subjects?

I also appear to have stepped on a touchy subject when I even mentioned HERV. Let me try to state my position there without using labels that may involve me in disputes of which I am unaware.

We have a newly-discovered virus which is about the smallest retrovirus I can imagine.
The question form of this is "How much of the information in XMRV could you remove and still have a retrovirus capable of infecting anything?"

Second, I am told this closely resembles MuLV, and that 95% of the sequences found in XMRV are also found in DNA presumed to have been inserted in germ line cells at some time in the past by unknown pathogens. This caused me to use the term which brought such a strong response.

Finally, if the supposition above is correct, is it too far fetched to suggest that the identified virus which can reproduce, but appears to be an empty vessel, might cause illness by activating unknown sequences inserted in the human genome by ancient pathogens?

This is what I wish I had said. I do make mistakes, even major blunders. I hope people will correct me gently before I make such a fool of myself.

 

[rebecca1995]

...That doesn't mean, though, that Dr. Mikovits has played this well in the research community; when Dr. Raccinello - says something like " the WPI doesn't think anyone knows how to do PCR" in public -...

When did Dr. Racaniello say that, Cort? I must have missed it!