WPI wants our blood for a study

[Countrygirl]

.

.
Well, Countrygirl. It appears that the WPI's appalling behaviour, and their refusal to be accountable for the blood samples they collected from UK patients, and their refusal to be accountable for the funds that were donated to WPI in 2010 and 2011 by hard pressed patients, is all now being swept under the carpet.

..

.

It would appear so, Wildcat. Bizarre! Does the rule of law not prevail in Nevada?

At least the full story of the shenanigans will be available for all to read in May.

I don't understand how this institute could be supported after their track record and I am astonished and puzzled how they could be awarded government grants. It is terribly sad as I think their intentions were genuine at the beginning, but money .........or the lack of it...........has the power to corrupt, as we all know.

I personally do not think that it is ethical to support an organisation that has behaved in this way. I was devastated by the whole saga, not least because I had made them the major beneficiary of my will as I thought that was my best way of helping the ME community.

Countrygirl

 

[leela]

What do you mean, Countrygirl?

 

[Countrygirl]

Leela, I have answered your question in a PM.....................or should I say I have started a conversation.

C.G.

 

[SOC]

.

The WPI do not have the Right to take my blood, and then blather and deny that my blood had any part of their so called 'research project'. Or did it? We never found out what happened to the UK patients blood samples, or the funding.
..

Um, you donated it, didn't you? That means you gave it to them, usually without any strings other than expectation of privacy. That's the usual practice with time or samples donated to research studies.

I believe that by US law if donated money was explicitly designated for a particular purpose but used for another, you can take legal action against the organization. If you donated money to some general fund without the legally correct designations, then you have no room to complain. Donations are gifts, after all, not contracts for service.

If you actually paid for some service you didn't get, then you have every right to follow through with some legal action. A group action (if there's a bunch of you in the same boat) would probably be best and most economical.

Was there some central group in the UK who organized this group donation of blood and money? Perhaps pressure can be put on them to follow through with appropriate legal action.

 

[Sushi]

Hi Sushi,

If they have a grant then presumably the exact nature of the study has been approved and details can be found somewhere? I don't suppose you know what it is they will be studying, do you? Thanks

It is an NIH grant, so presumably so. I believe they are looking for causes but I don't know the details. It must be look-up-able--but I haven't had the time yet.

New crew of researchers at WPI. For me, I am dealing with my doctor of many years, so the issues are not the same.

Sushi

 

[JT1024]

I doubt that's a problem. There's plenty of other people willing to participate in research that might benefit the patient population. Your blood is not necessary, so if you're uncomfortable there's no reason to participate.

I, for one, don't expect to come to harm from donating blood for research done by DeMeirleir or Lombardi, while there's potential for it to benefit us all.

I would not recommend one person provide one drop of blood to WPI. Glad you are comfortable with Lombardi and DeMeirleir. WPI was connected to VIPDx through Lombardi. Lombardi and DeMeirleir (through Red Labs) all made money selling XMRV tests when they should have been shut down. Not sure how long you've been following that debacle or the evolution of this forum but what played out over the last several years is worthy of a novel or movie. You cannot dream this stuff up.

I would love research to benefit patients but not all research is equal. At this point, I can't even believe WPI would be considered for ANY research. The NIH grant should have been taken back and operations should have ceased... Doors closed.

Publication of research findings can mean nothing if the research is funded with a particular outcome in mind (like those funded by Pharma). Research findings that are negative can be suppressed while marginal research can be manipulated/promoted/marketed to secure additional funding or to sell drugs.

I am so disgusted with the political and financial games being played at the expense of real patients. Unfortunately, some "patients", patient "advocates", some physicians, and some researchers are playing high stakes poker. They all think they can score a big win while our lives are the chips/money they risk losing. I have no respect for these high rollers.

We all know odds are in favor of the "house".. in the case of ME/CFS and other neuro-immune illnesses, who is the owner/house? Is it the government? Is it Big Pharma? Is it the insurance industry? I "bet" Harvey Whittemore knows the answer to that question. I look forward to him serving his jail sentence and losing his license to practice law.

 

[Wildcat]

.
.
De Meilier marketed a 'CFS' Urine test a few years ago. That sank without a trace after a few months. No explanation was forthcoming about why he marketed it and why he no longer sells it.

What short memories some people have.

 

[Sushi]

.
.
De Meilier marketed a 'CFS' Urine test a few years ago. That sank without a trace after a few months. No explanation was forthcoming about why he marketed it and why he no longer sells it.

What short memories some people have.

Hi Wildcat,

That urine test was in use for several years (it may still be in use--that I don't know) and I didn't mind paying $10 for an experimental test that might (or might not) give useful information.

Sushi

 

[SOC]

I would not recommend one person provide one drop of blood to WPI. Glad you are comfortable with Lombardi and DeMeirleir. WPI was connected to VIPDx through Lombardi. Lombardi and DeMeirleir (through Red Labs) all made money selling XMRV tests when they should have been shut down. Not sure how long you've been following that debacle or the evolution of this forum but what played out over the last several years is worthy of a novel or movie. You cannot dream this stuff up.

I would love research to benefit patients but not all research is equal. At this point, I can't even believe WPI would be considered for ANY research. The NIH grant should have been taken back and operations should have ceased... Doors closed.

Publication of research findings can mean nothing if the research is funded with a particular outcome in mind (like those funded by Pharma). Research findings that are negative can be suppressed while marginal research can be manipulated/promoted/marketed to secure additional funding or to sell drugs.

I am so disgusted with the political and financial games being played at the expense of real patients. Unfortunately, some "patients", patient "advocates", some physicians, and some researchers are playing high stakes poker. They all think they can score a big win while our lives are the chips/money they risk losing. I have no respect for these high rollers.

We all know odds are in favor of the "house".. in the case of ME/CFS and other neuro-immune illnesses, who is the owner/house? Is it the government? Is it Big Pharma? Is it the insurance industry? I "bet" Harvey Whittemore knows the answer to that question. I look forward to him serving his jail sentence and losing his license to practice law.

The XMRV tests were clearly experimental. No one MADE you take (or pay for) it. Very, very many patients chose NOT to have the test because it wasn't a certified test. The WPI and VIPDx were very clear about that. You chose to have the test. You took a risk. Now you want to blame someone else for not stopping you from choosing to take that risk? Life is full of risks. Everyone chooses the risks they want to take. You chose one you regret now. I'm not sure why you want to blame WPI (and KDM also, apparently) for the decision you made with eyes wide open.

If they did not perform a service that you contracted and paid for, then I understand entirely why you would be upset. That's not what you've been saying here. However, if that IS the case, then please, get together with the other defrauded people and take legal action. That would be a great service to the patient population.

If, on the other hand, there was no fraud and no illegal activity, you might want to be careful that you don't cross the line into libel and slander, particularly if you are going to say it in a very public place like PR.

Libel and Slander
Two torts that involve the communication of false information about a person, a group, or an entity such as a corporation. Libel is any Defamation that can be seen, such as a writing, printing, effigy, movie, or statue. Slander is any defamation that is spoken and heard.

Collectively known as defamation, libel and slander are civil wrongs that harm a reputation; decrease respect, regard, or confidence; or induce disparaging, hostile, or disagreeable opinions or feelings against an individual or entity. The injury to one's good name or reputation is affected through written or spoken words or visual images. The laws governing these torts are identical.

 

[Countrygirl]

We all know odds are in favor of the "house".. in the case of ME/CFS and other neuro-immune illnesses, who is the owner/house? Is it the government? Is it Big Pharma? Is it the insurance industry? I "bet" Harvey Whittemore knows the answer to that question. I look forward to him serving his jail sentence and losing his license to practice law.[/quote]

I would not recommend one person provide one drop of blood to WPI. Glad you are comfortable with Lombardi and DeMeirleir. WPI was connected to VIPDx through Lombardi. Lombardi and DeMeirleir (through Red Labs) all made money selling XMRV tests when they should have been shut down. Not sure how long you've been following that debacle or the evolution of this forum but what played out over the last several years is worthy of a novel or movie. You cannot dream this stuff up.

I would love research to benefit patients but not all research is equal. At this point, I can't even believe WPI would be considered for ANY research. The NIH grant should have been taken back and operations should have ceased... Doors closed.

Publication of research findings can mean nothing if the research is funded with a particular outcome in mind (like those funded by Pharma). Research findings that are negative can be suppressed while marginal research can be manipulated/promoted/marketed to secure additional funding or to sell drugs.

I am so disgusted with the political and financial games being played at the expense of real patients. Unfortunately, some "patients", patient "advocates", some physicians, and some researchers are playing high stakes poker. They all think they can score a big win while our lives are the chips/money they risk losing. I have no respect for these high rollers.

We all know odds are in favor of the "house".. in the case of ME/CFS and other neuro-immune illnesses, who is the owner/house? Is it the government? Is it Big Pharma? Is it the insurance industry? I "bet" Harvey Whittemore knows the answer to that question. I look forward to him serving his jail sentence and losing his license to practice law.[/

I see some here do not know the story and I can only suggest that you read the book called Plague by Kent Heckenlively in May that can be ordered through Amazon. That will explain the events. Then you can make an informed decision.

 

[Firestormm]

I guess this is the study @SOC although I would be interested if someone could track down the details from NIH - protocol and amount of grant - thanks

www.wpinstitute.org/research/research_projects.html

New Strategies to Decipher the Pathophysiology of Chronic Fatigue Syndrome
The original Aims of the National Institutes of Health (NIH) RO1 grant were to identify both novel viral infections and genetic susceptibility factors in European and American cohorts of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patients.
The principal investigator (PI), Dr. Vincent Lombardi, will pursue these Aims using more advance technology in order to discover pathogens (known or unknown infectious agents) and their associated immune responses in ME/CFS...

http://www.wpinstitute.org/pdf/WPI_RO1Grant.pdf

Study Recruitment Flyer: http://www.wpinstitute.org/pdf/RecruitmentFlyer_111412.pdf

 

[Firestormm]

Here is the NIH Entry for the Grant: http://projectreporter.nih.gov/project_info_description.cfm?aid=8528450&icde=0

The grant itself was for $284, 693 and the study is due to end in August 2014.

 

[Countrygirl]

I think the grant mentioned above is the old one that was awarded to Dr Judy Mikovits. It is due to expire this year, I think. It should have been withdrawn when the problems were revealed that prompted the bizarre saga.

I would be surprised if a government agency would award a grant to an institution where criminal activity has been given a two year prison sentence.

C.G...

 

[Firestormm]

I think the grant mention above is the old one that was won to Dr Judy Mikovits. It is due to expire this year, I think. It should have been withdrawn when the problems were revealed that prompted the bizarre saga.

I would be surprised if a government agency would award a grant to an institution where criminal activity has been given a two year prison sentence.

C.G...

It's still active and Lombardi is the one on the grant. Study/Grant is due to complete in August 2014 as I said.

 

[Countrygirl]

Apologies Firestormm that my post was illiterate. I have corrected it now. (I hope!)

I know Lombardi was permitted to use the reminder of the grant, but has he made any progress? The cytokine study was Judy's work I think, but I don't know if anything else has been achieved.

Frankly, after reading the details of the incredible account of those few years in Kent and Judy's book, I doubt that the institute will be able to survive for long unless there are significant changes. As they say, truth can be stranger than fiction. It is a mind boggling story, in my opinion. My blood sample has clearly had a far more exciting life than I, as well as having travelled half way round the world while the rest of me remains on the sofa..

C.G.

 

[Firestormm]

It is a lora-lora-money that went to WPI from NIH especially perhaps when you think of some of the scientists involved in our condition who are having to approach the public direct. Still I shall be interested to see what comes of the $290k investment. No harm if it's a decent study.

 

[Sushi]

@Firestormm

Thanks for looking that up and posting it along with the recruitment flyer.

Sushi

 

[*GG*]

I think the grant mentioned above is the old one that was awarded to Dr Judy Mikovits. It is due to expire this year, I think. It should have been withdrawn when the problems were revealed that prompted the bizarre saga.

I would be surprised if a government agency would award a grant to an institution where criminal activity has been given a two year prison sentence.

C.G...

I wouldn't, gov't are incompetent! Not sure it is fair to lump in corrupt Dems in Nevada with WPI. FYI Seems like 2 separate issues.

GG

 

[JT1024]

The XMRV tests were clearly experimental. No one MADE you take (or pay for) it. Very, very many patients chose NOT to have the test because it wasn't a certified test. The WPI and VIPDx were very clear about that. You chose to have the test. You took a risk. Now you want to blame someone else for not stopping you from choosing to take that risk? Life is full of risks. Everyone chooses the risks they want to take. You chose one you regret now. I'm not sure why you want to blame WPI (and KDM also, apparently) for the decision you made with eyes wide open.

If they did not perform a service that you contracted and paid for, then I understand entirely why you would be upset. That's not what you've been saying here. However, if that IS the case, then please, get together with the other defrauded people and take legal action. That would be a great service to the patient population.

If, on the other hand, there was no fraud and no illegal activity, you might want to be careful that you don't cross the line into libel and slander, particularly if you are going to say it in a very public place like PR.[/quot

 

[Ernie]

Still asking the question, exactly how was Lombardi paid if he worked at VIPdx since 2009? And how did he come up with new revised non-validated cheaper versions of XMRV tests at VIPdx for sale, which would need the approval from his bosses, the Whittemores? Where did the money go from VIPdx? I believe the Annual reports indicate Wp Biotechnologies was owned by Harvey. KDM helped set up and was part of REDlabs USA (this happened in 2006) which later became VIPdx. Who all had a stake in VIPdx? What was discovered about VIPdx? Mikovits worked in the Research lab and all her work was fully funded by the NIH grants that she obtained. The cytokine work was all hers.