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    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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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*2 new* letters, Myra McClue, Annette Whittemore

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fred

The game is afoot
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400
While I am an American, without experience with a peerage, the kind of thing motivating this in wealthy and prominent families often turns out to be a family member who is not quite a skeleton in the closet, but certainly not reliable enough to be placed in charge of vast enterprises. It helps to have discrete and sympathetic doctors who can prevent said relative from forcing the issue in a public scandal. (This does not say said relative really is competent. There are some real lulus around who can just barely be kept from taking advice from ascended masters, and booking passage on astral transportation.)

So, perhaps a 'hidden' relative who has ME and the family donates funds to research either (a) believing (misguidedly?) that it is genuinely helping in some way or (b) to assuage feelings of guilt/helplessness in not being able to do anything about it themselves?
 
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But, again, this is David Sainsbury (Labour peer), not John Sainsbury (Tory peer) who funds the Linbury Trust.

Im pretty sure they are cousins though .They appear to cover all options by having a family member well placed in both of the major political parties.

I suspect the most likely reason they are funding is so the Weasal can help them stave off the arguments that some of the chemicals sprayed on crops may directly cause CFS-related illnesses by air pollution. There are also the contamination of water supplies issues that he counteracts with psycho-babble too.

IMHO the Weasal has his fingers in denying nearly every major issue where some form of government or corporate compensation might be expected to be paid out to sufferers should the correct science be uncovered to explain the truth.
 
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Location
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IMHO the Weasal has his fingers in denying nearly every major issue where some form of government or corporate compensation might be expected to be paid out to sufferers should the correct science be uncovered to explain the truth.

Simon Wessely's CV includes covering up :-

ME/CFS
Gulf War Syndrome
Overhead Pylons cancer link.
The Camelford water disaster
Mobile phones cancer link
 

anciendaze

Senior Member
Messages
1,841
motivations and madness

So, perhaps a 'hidden' relative who has ME and the family donates funds to research either (a) believing (misguidedly?) that it is genuinely helping in some way or (b) to assuage feelings of guilt/helplessness in not being able to do anything about it themselves?
You just passed a test, whether or not you were aware of this.

Painful personal experience involving a person with a debilitating illness, and another who really did meet diagnostic criteria for paranoid schizophrenia, helped me to understand why a family with money would fund research with a psychiatric bias. The illness in question turned out to have very solid diagnosis, based on biopsy, as an inherited genetic problem, with strong reason to believe it was the result of a very recent mutation. (It's hard to hide something which cripples half your descendants.)

In the process of trying to help I learned that about 1/4 of known genetic diseases have effects on the CNS, regardless of the organs worst affected. In addition to physical disability, the victim had significant mental problems which very likely had an organic basis.

Put this in the mind of the intermediary with mental problems, and you get a family trying to hide the results of incest, and murdering relatives to gain control of inheritance. Psychiatrists played a central role in this plot. I was told most psychiatrists either came from Nazi Germany, or were educated by such, to mention only one surprising revelation. (Said expert often embellished documents he produced with little swastikas and inked blood drops.)

I ended up agreeing with psychiatrists that the victim was not competent to manage money. The inheritance in question turned out to be less than the amount placed in a trust fund to provide care for the victim after parents died. That intervention prevented them from adding the inheritance to the trust. Without the threat of being hospitalized, that intermediary would have hounded the family until all were dead. As it was the mother of the victim did die of heart failure.

Under these circumstances, it is only too easy to see how people with money and power would come to rely on advice from psychiatrists. The family I mentioned donated money to mental-health charities. As an indirect result, the intermediary was seen on national TV in Washington carrying a 10-foot syringe as part of a counter protest against a march by the National Alliance on Mental Illness. (I doubt my native imagination is adequate to make this up.) If this person is not on a Secret Service watch list, someone is not doing their job.

It is all too likely prominent psychiatrists have strong personal ties to families who have suffered through similar ordeals.
 

flex

Senior Member
Messages
304
Location
London area
Originally Posted by flex
Paul Drayson now Lord Drayson became Science Minister after Sainsbury in 2007/8,
check out this link for claims around Tony Blair, Drayson, donations to labour party and links to big pharma and vaccines.


But, again, this is David Sainsbury (Labour peer), not John Sainsbury (Tory peer) who funds the Linbury Trust.

Fred

Lord Drayson is Lord Sainsbury? Paul Drayson took over from David Sainsbury as science minister and is now a Lord himself. Or did I pick you up wrong :confused:

Lord Drayson is involved in big pharma and it is alleged he won a vaccine contract from the Labour government.
http://spinprofiles.org/index.php/Paul_Drayson


Also like it is stated the Sainsburys peers are cousins. John is funder of The Linbury Trust and David is heavily involved in GM foods.
http://www.nlpwessex.org/docs/sainsbury.htm
 

anciendaze

Senior Member
Messages
1,841
Even with Gerwyn's comment about 0.2 ml blood samples, I'm still having trouble finding anything in the paper which might allow me to estimate the number of cells in samples. This is a simple integer, not a statistical measure or anything as controversial as diagnostic criteria. Shouldn't this be published, or easy to infer? (Admittedly, I am suffering from brain fog.)

Published results concerning XMRV in prostate cancer, where diagnosis is reliable, suggest we are dealing with a small number of infected cells, and failure to get the right cells will cause tests to fail. Use of water for negative controls, containing zero cells, does not convince me an IC study with positive results would have been valid, had anything turned up. One problem here is that XMRV is 95% homologous to HERV. You need to demonstrate both sensitivity and selectivity or results are meaningless. If infection with XMRV causes HERV to be expressed, we could have a tangle that will take time to sort out.

Still, at this point, I am nearly convinced the problem lies with the preparation for PCR, not with the cohort, or the ability to find virus once you have adequate samples.

I think the controversy over diagnostic criteria could backfire, as it is nearly impossible to exclude CFS patients from cohorts with clinical depression. Widespread testing of psychiatric patients for physical problems has yielded surprises in the past. I'm betting this will happen again. This is a can of worms a great many people don't want to open.
 
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Gerwyn

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Even with Gerwyn's comment about 0.2 ml blood samples, I'm still having trouble finding anything in the paper which might allow me to estimate the number of cells in samples. This is a simple integer, not a statistical measure or anything as controversial as diagnostic criteria. Shouldn't this be published, or easy to infer? (Admittedly, I am suffering from brain fog.)

Published results concerning XMRV in prostate cancer, where diagnosis is reliable, suggest we are dealing with a small number of infected cells, and failure to get the right cells will cause tests to fail. Use of water for negative controls, containing zero cells, does not convince me an IC study with positive results would have been valid, had anything turned up. One problem here is that XMRV is 95% homologous to HERV. You need to demonstrate both sensitivity and selectivity or results are meaningless. If infection with XMRV causes HERV to be expressed, we could have a tangle that will take time to sort out.

Still, at this point, I am nearly convinced the problem lies with the preparation for PCR, not with the cohort, or the ability to find virus once you have adequate samples.

I think the controversy over diagnostic criteria could backfire, as it is nearly impossible to exclude CFS patients from cohorts with clinical depression. Widespread testing of psychiatric patients for physical problems has yielded surprises in the past. I'm betting this will happen again. This is a can of worms a great many people don't want to open.


The number of estimated cells are in the science paper.The Oxford criteria only diagnoses idiopathic chronic fatigue or fatigue resulting from depression.This is to be expected when using homemade diagnostic criteria which only consider fatigue as the sole mandatory criteria.

This is to be further expected when said criteria were concocted by just 4 psychiatrists and have no international validity.

The basic point to consider is that PCR needs cDNA in order to work.

This means that XMRV has to be replicating.To replicate XMRV needs replicating PMBC,s.There are no replicating PMBC,s in old blood.That is why the PMBC,s need to be activated.

So Even if Weasleys patients had ME'cfs by some small chance Mclures approach would not have had a hope in hades of finding XMRV.

The CCC criterea easily differentiates people with ME from patients with depression by making neuroendocrine symptoms and post exertional malaise mandatory-simple really!

The Oxford criteria only have no ability to do so but such patients are actively selected for.There is no such thing as HERV by the way!

The recipe in the Science paper( simplified) is take 2 ml of fresh blood then concentrate your PMBC,s as your first step.What part of that is difficult to understand? Too difficult for Mclure and Groom apparently
 

fred

The game is afoot
Messages
400
Im pretty sure they are cousins though .They appear to cover all options by having a family member well placed in both of the major political parties.

Being cousins doesn't necessarily make them conspiratorial bedfellows. They are very different characters and, indeed, when both were working at Sainsbury's, and the older John was Chairman, there was rumoured to be a lot of friction between the two.

John built up a strong retail empire. He was an old school manager whose mantra was 'retail is detail'. After John retired, David took over and the business did less well. At the time, commentators implied that he struggled to fill John's shoes.

John is an Oxford Tory who favours the arts. David is a Cambridge ex-Social Democratic who prefers science.

Each have their own charitable trusts: John has Linbury and David has Gatsby.

Given this, it seems unlikely that Lord John is using 5% of his charitable trust's funds (and some of his daughter's environmental trust's funds) to help Lord David's science friends, especially when the latter has enough wealth to do this by himself.
 
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Gerwyn

Guest
Being cousins doesn't necessarily make them conspiratorial bedfellows. They are very different characters and, indeed, when both were working at Sainsbury's, and the older John was Chairman, there was rumoured to be a lot of friction between the two.

John built up a strong retail empire. He was an old school manager whose mantra was 'retail is detail'. After John retired, David took over and the business did less well. At the time, commentators implied that he struggled to fill John's shoes.

John is an Oxford Tory who favours the arts. David is a Cambridge ex-Social Democratic who prefers science.

Each have their own charitable trusts: John has Linbury and David has Gatsby.

Given this, it seems unlikely that Lord John is using 5% of his charitable trust's funds (and some of his daughter's environmental trust's funds) to help Lord David's science friends, especially when the latter has enough wealth to do this by himself.

Yet the Linbury trust routinely funds Weasley,s work
 

fred

The game is afoot
Messages
400
Yet the Linbury trust routinely funds Weasley,s work

And, whilst there must be a rationale for this, I think it is a quantum leap to suggest that Lord John and his daughter are proactively supporting Lord David's science colleagues' efforts to deny Gulf War Syndrome and so on.
 

anciendaze

Senior Member
Messages
1,841
The recipe in the Science paper( simplified) is take 2 ml of fresh blood then concentrate your PMBC,s as your first step.What part of that is difficult to understand? Too difficult for Mclure and Groom apparently
The number of estimated cells are in the science paper....
I was not critiquing the Science paper. Your post earlier said 0.2 ml blood, which got my attention. If the number of blood cells was off by an order of magnitude, that would be highly significant.
 
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Gerwyn

Guest
I was not critiquing the Science paper. Your post earlier said 0.2 ml blood, which got my attention. If the number of blood cells was off by an order of magnitude, that would be highly significant.

'm still having trouble finding anything in the paper which might allow me to estimate the number of cells in samples. This is a simple integer, not a statistical measure or anything as controversial as diagnostic criteria. Shouldn't this be published, or easy to infer? (Admittedly, I am suffering from brain fog.)

Published results concerning XMRV in prostate cancer, where diagnosis is reliable, suggest we are dealing with a small number of infected cells, and failure to get the right cells will cause tests to fail. Use of water for negative controls, containing zero cells, does not convince me an IC study with positive results would have been valid, had anything turned up. One problem here is that XMRV is 95% homologous to HERV. You need to demonstrate both sensitivity and selectivity or results are meaningless. If infection with XMRV causes HERV to be expressed, we could have a tangle that will take time to sort out.

Still, at this point, I am nearly convinced the problem lies with the preparation for PCR, not with the cohort, or the ability to find virus once you have adequate samples.

I think the controversy over diagnostic criteria could backfire, as it is nearly impossible to exclude CFS patients from cohorts with clinical depression. Widespread testing of psychiatric patients for physical problems has yielded surprises in the past. I'm betting this will happen again. This is a can of worms a great many people don't want to open.

I was replying to your post as a whole

The number of estimated cells are in the science paper.The Oxford criteria only diagnoses idiopathic chronic fatigue or fatigue resulting from depression.This is to be expected when using homemade diagnostic criteria which only consider fatigue as the sole mandatory criteria.

This is to be further expected when said criteria were concocted by just 4 psychiatrists and have no international validity.

The basic point to consider is that PCR needs cDNA in order to work.

This means that XMRV has to be replicating.To replicate XMRV needs replicating PMBC,s.There are no replicating PMBC,s in old blood.That is why the PMBC,s need to be activated.

So Even if Weasleys patients had ME'cfs by some small chance Mclures approach would not have had a hope in hades of finding XMRV.

The CCC criterea easily differentiates people with ME from patients with depression by making neuroendocrine symptoms and post exertional malaise mandatory-simple really!

The Oxford criteria only have no ability to do so but such patients are actively selected for.There is no such thing as HERV by the way!

The recipe in the Science paper( simplified) is take 2 ml of fresh blood then concentrate your PMBC,s as your first step.What part of that is difficult to understand? Too difficult for Mclure and Groom apparently
 

flex

Senior Member
Messages
304
Location
London area
Fred and Gerwyn

it would appear that being the minister of science affords you a great deal of control over the MRC who are responsible for always turning down grants for biomedical studies on ME. There appears to be ongoing connections to BOTH Lord Sainsburys, the Wessely school the MRC, The Linbury trust and the falsehood of the psychological perspective on ME. It also seems to help if you can buy positions of influence from the Government when you are involved in GM crop production and in the case of Lord Drayson the vaccine industry. Why do both Lord Sainsburys seem to have links to the continuing myths around ME by means of power, influence and grants approval or denial.

Check this link out:
http://www.cfsinfo.be/wesseley.htm
 
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76
fred said:
I think it is a quantum leap to suggest that Lord John and his daughter are proactively supporting Lord David's science colleagues' efforts to deny Gulf War Syndrome and so on.

I dont think anyone has suggested that :confused:?

I was implying it helps having family in strategic places, nothing to do with one funding the other's causes. Big corporates like Sainsburys always help to preserve their business by influencing government policy and legislation.
 

anciendaze

Senior Member
Messages
1,841
...There is no such thing as HERV by the way!
I was using a common label to avoid a long circumlocution. With 24 identified families, existence of HERVs (pl.) is not exactly a wild claim. Here is a paper on a reconstructed, functional HERV-K If, as repeatedly stated, XMRV is nearly homologous with some ancient retrovirus now integrated into the human genome, it is entirely possible it could reactivate one. In this case, the missing "viral payload" genes might already be in humans. This would explain how a virus which doesn't appear to do anything except reproduce the elements needed to reproduce (gag, pol, env) could have wildly divergent consequences in different people.

I agree the PBMC should have been activated. However, if the level of virus were high enough, there would still be a chance of detection. This negative result could help to set bounds on the number of infected cells.

I am not arguing in favor of the Oxford definition for CFS, it is so vague as to be useless. I think they might detect XMRV in a cohort which meets DSM-IV TR criteria for clinical depression. This could be a game changer for much more than CFS/ME.

I'm still wondering about your statement of 0.2 ml samples. This doesn't seem like a typo.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
The number of estimated cells are in the science paper.The Oxford criteria only diagnoses idiopathic chronic fatigue or fatigue resulting from depression.This is to be expected when using homemade diagnostic criteria which only consider fatigue as the sole mandatory criteria.

This is to be further expected when said criteria were concocted by just 4 psychiatrists and have no international validity.

The basic point to consider is that PCR needs cDNA in order to work.

This means that XMRV has to be replicating.To replicate XMRV needs replicating PMBC,s.There are no replicating PMBC,s in old blood.That is why the PMBC,s need to be activated.

So Even if Weasleys patients had ME'cfs by some small chance Mclures approach would not have had a hope in hades of finding XMRV...

The recipe in the Science paper( simplified) is take 2 ml of fresh blood then concentrate your PMBC,s as your first step.What part of that is difficult to understand? Too difficult for Mclure and Groom apparently

Homemade diagnostic criteria! :tear:

Illuminating info on McClure's and Groom's work.
 

fred

The game is afoot
Messages
400
I dont think anyone has suggested that :confused:?

See below.

Flex said:
There appears to be ongoing connections to BOTH Lord Sainsburys, the Wessely school the MRC, The Linbury trust and the falsehood of the psychological perspective on ME.

It may appear to be but where is the evidence? At the moment, it is still circumstantial.

If the two men didn't have the same surname, would the connection still be drawn?

I'm not saying the contention is or is not valid. Just that there is no hard evidence to support it.
 
G

Gerwyn

Guest
I was using a common label to avoid a long circumlocution. With 24 identified families, existence of HERVs (pl.) is not exactly a wild claim. Here is a paper on a reconstructed, functional HERV-K If, as repeatedly stated, XMRV is nearly homologous with some ancient retrovirus now integrated into the human genome, it is entirely possible it could reactivate one. In this case, the missing "viral payload" genes might already be in humans. This would explain how a virus which doesn't appear to do anything except reproduce the elements needed to reproduce (gag, pol, env) could have wildly divergent consequences in different people.

I agree the PBMC should have been activated. However, if the level of virus were high enough, there would still be a chance of detection. This negative result could help to set bounds on the number of infected cells.

I am not arguing in favor of the Oxford definition for CFS, it is so vague as to be useless. I think they might detect XMRV in a cohort which meets DSM-IV TR criteria for clinical depression. This could be a game changer for much more than CFS/ME.

I'm still wondering about your statement of 0.2 ml samples. This doesn't seem like a typo.

All Mulv class HErvs were excluded as a result of genotyping.The point is that xmrv as other Mulvs are low titre viruses.The volume of blood used is clearly stated in Mclures study..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.
 

flex

Senior Member
Messages
304
Location
London area
Fred exactly what do you want in terms of evidence. Evidence is something that supports your case. It can always be disputed as evidence by your opposition.

Also I'm just making the connections for people to see them. Anyone is welcome to dig deeper, but I doubt you will find a smoking gun with the words "ME corruption" on it.
 
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