WPI UK XMRV testing/study

[ukxmrv]

The volcanic ash over Europe (and the uncertainty of setting any more dates and have to cancel them and disappoint patients) was probably a factor in making the decision to concentrate on the Ashford draw (for now anyway).

 

[omerbasket]

Do any of you know why the WPI won't do anymore blood draws until after the Ashford group's been tested?

The only thing I can think of is that they're hoping to get enough possitives that they would need to test anyone else.
I hope this isn't the case I'd had my heart set on being tested.

Also: Why has the venues section been taken down on the website set up by countrygirl etc?

In my opinion, there is just no way that WPI would promise to test someone and would not do it. As I said before - They are angels, and if they said they will test you - I strongly strongly believe that would happen.

 

[fds66]

That is my opinion too omerbasket. They said they would test us and I really believe that they will. My thought is that they have a decent number of samples now so they can start their testing procedures and get all the creases ironed out and do some experimentation. When they have the testing procedures running smoothly in all the labs then they can take the bulk of the samples and process them more efficiently. It could be that the flight situation in Europe has influenced their thinking as well or it may have been that they just need a pause to sort things out then they can go full steam ahead. This isn't commercial testing they are doing - it is lab work and may take some time to perfect. Just my thoughts on the matter.

Another thing that I can't find a link to is the Invest in ME newletter section about the WPI testing. I've been looking to see if it is posted anywhere else but couldn't see it yesterday. It certainly told me things I didn't know before so I will have a final scout around and if I don't find it on the board today I'll add it to this thread later on.

 

[fds66]

I really can't find the Invest in ME section of the newsletter anywhere so I'm doing to post it here and if it is already somewhere else I'll come in and remove it. I feel that it's an important document and needs to be on here.

from http://www.investinme.org/Documents/Newsletters/Invest%20in%20ME%20March-April%20Newsletter%202010.pdf

(My bold and edited spacing - all the formatting was lost when I pasted it in here)

Invest in ME Funds UK Biomedical Research Study by WPI

After Dr Jonathan Kerr announced that the planned research proposals for which IiME were
attempting to raise funds (the role of XMRV in modulation of NK cell cytotoxicity and NK cell
gene abnormalities in ME/CFS patients and normal blood donors) was being withdrawn due to
no CFS patients being found to have XMRV Invest in ME had to decide where our Biomedical
Research Fund could be used.

We wrote to the WPI's research director, Dr Judy Mikovits, and asked how we could help
counter the negative comments about recent WPI biomedical research being made by
establishment organisations and even by some individuals who are known to ME patients.
Dr Mikovits replied to us that we needed to look at UK patients. So we then decided this was
the best way forward and that we would attempt to fund WPI research on UK patients. Those
IiME supporters who had contributed to the Kerr study were contacted with an offer to refund
their contributions or use them for other biomedical research. It is a testament to the
patients, carers and families who support IiME that all of them decided that IiME could use
these funds for biomedical research.

In discussions with Dr Mikovits we then decided to fund the studies suggested by her -
especially as this finally provided an opportunity for those who are severely affected and/or
who are house- or bedbound to participate in biomedical research. And so the WPI UK studies
were started.

Our statement was issued at the beginning of March - click here. Due to these plans becoming
public knowledge other patients applied to be included.To the great credit of the WPI they then extended the numbers allowed into the studies of UK patients at their own cost and it now consists of over two hundred.

It is ironic to think that UK patients have to go to an institute in USA (described by the
Guardian newspaper as "a small private pathology laboratory in Reno, Nevada" - but
described by IiME in 2007 as "this exciting development") to have these tests performed.
Ironic that whilst the MRC take two years to form yet another expert panel to discuss future
research into ME and yet achieve nothing but a few meetings, that thei PACE trials will soon
be published to show that CBT and GET as the most effectivetreatments for ME, despite being
comprehensively destroyed by Margaret Williams and Professor Malcolm Hooper in Magical
Medicine.

Ironic that whilst the MRC panel hold meetings which still have no published minutes and
produce no tangible benefit or any apparent decisions on funding of biomedical research, an
advisor to a children's charity can be awarded 160,000 to study a hyped-up psychotherapy/
training programme which has become a lucrative business for some and which
anyone can practise with relatively little experience and no requirements for a medical
qualification.

Ironic that establishment organisations and some spokespersons seek to downplay or negate
any new biomedical research into ME yet refuse to take responsibility or make themselves
accountable to patients (witness the correspondence between Professor Malcolm Hooper and
NICE and the MRC and Invest in ME's letter to the Secretary of State and the Prime Minister
later in the newsletter).

A situation is left to fester for a generation where the UK government refuses to act, the UK
Chief Medical Officer refuses to lead, the UK Medical Research Council refuses to fund, where
the UK National Institute of Clinical Excellence refuses to treat seriously and where some UK
ME charities build themselves into powerful organisations and fail to represent the patients
who fund them.

Yet a reverse irony of sorts is now becoming apparent - one turned back on those who fund
and support the non-science behind the psychosocial approach to ME.

An irony where the demand from UK patients to participate in these new WPI UK studies, or
in Dr Chia's enteroviral testing - and Dr Lerner's, Dr Peterson's or Professor De Meirleir's
testing and treatment regimes - all demonstrate that decisions and responsibility for ME
research and healthcare is no longer solely in the domain of these uncaring, unrepresentative
and unelected offcials but is taken back to the people.

A reverse irony where these same UK patients are themselves so desperate to get better that
they grab on to the hope brought about by an institute in America (WPI) whose UK research
is partly funded by one of the smallest, non-subscription based charities in the UK (Invest in
ME).

The WPI may or may not prove causality or implication for the XMRV virus. But what they
have done is to provide hope that biomedical research, proper science and dignity for patients- all key elements of a longer term strategy - will overcome the intransigence, apathy and
deceipt of those who have been instrumental in retaining a status quo of inactivity. And this is
what makes the establishment organisations and individuals scared.

Research such as the WPI study in the UK, using IiME's comparatively meagre Biomedical
Research Fund, is performing something which the establishment and those who are
employed by the establishment to cast doubt, cannot contain.

It is giving patients hope and influence.

In our letter to the Prime Minister in July 2009 [click here] we reminded him of his words
from the previous year whilst discussing the future National Health Service -
'It will not be the NHS of the passive patient - the NHS of the future will be one of patient
power, patients engaged and taking greater control over their own health and their healthcare
too.'

In a remarkable twist certainly not envisaged in the spin of Gordon Brown's original policy
statement, patients are being engaged and taking greater control over their own health. Yet it
is not the NHS or the UK government who are shaping the future of healthcare for UK ME
patients.

Instead it is a "small pathology lab" in Nevada.

IiME would agree for once with the Prime Minister - Power to the Patients.

I wonder if this will be missed by many because it is on the UK thread and so deserves a thread of its own but I know that effort is being made to not have too many threads on the same subject. What do you think?

 

[valia]

Invest in ME Funds UK Biomedical Research Study by WPI

After Dr Jonathan Kerr announced that the planned research proposals for which IiME were
attempting to raise funds (the role of XMRV in modulation of NK cell cytotoxicity and NK cell
gene abnormalities in ME/CFS patients and normal blood donors) was being withdrawn due to
no CFS patients being found to have XMRV Invest in ME had to decide where our Biomedical
Research Fund could be used.

We wrote to the WPI's research director, Dr Judy Mikovits, and asked how we could help
counter the negative comments about recent WPI biomedical research being made by
establishment organisations and even by some individuals who are known to ME patients.
Dr Mikovits replied to us that we needed to look at UK patients. So we then decided this was
the best way forward and that we would attempt to fund WPI research on UK patients. Those
IiME supporters who had contributed to the Kerr study were contacted with an offer to refund
their contributions or use them for other biomedical research. It is a testament to the
patients, carers and families who support IiME that all of them decided that IiME could use
these funds for biomedical research.

In discussions with Dr Mikovits we then decided to fund the studies suggested by her -
especially as this finally provided an opportunity for those who are severely affected and/or
who are house- or bedbound to participate in biomedical research. And so the WPI UK studies
were started.

Our statement was issued at the beginning of March - click here. Due to these plans becoming
public knowledge other patients applied to be included.To the great credit of the WPI they then extended the numbers allowed into the studies of UK patients at their own cost and it now consists of over two hundred.

It is ironic to think that UK patients have to go to an institute in USA (described by the
Guardian newspaper as "a small private pathology laboratory in Reno, Nevada" - but
described by IiME in 2007 as "this exciting development") to have these tests performed.
Ironic that whilst the MRC take two years to form yet another expert panel to discuss future
research into ME and yet achieve nothing but a few meetings, that thei PACE trials will soon
be published to show that CBT and GET as the most effectivetreatments for ME, despite being
comprehensively destroyed by Margaret Williams and Professor Malcolm Hooper in Magical
Medicine.

Ironic that whilst the MRC panel hold meetings which still have no published minutes and
produce no tangible benefit or any apparent decisions on funding of biomedical research, an
advisor to a children's charity can be awarded 160,000 to study a hyped-up psychotherapy/
training programme which has become a lucrative business for some and which
anyone can practise with relatively little experience and no requirements for a medical
qualification.

Ironic that establishment organisations and some spokespersons seek to downplay or negate
any new biomedical research into ME yet refuse to take responsibility or make themselves
accountable to patients (witness the correspondence between Professor Malcolm Hooper and
NICE and the MRC and Invest in ME's letter to the Secretary of State and the Prime Minister
later in the newsletter).

A situation is left to fester for a generation where the UK government refuses to act, the UK
Chief Medical Officer refuses to lead, the UK Medical Research Council refuses to fund, where
the UK National Institute of Clinical Excellence refuses to treat seriously and where some UK
ME charities build themselves into powerful organisations and fail to represent the patients
who fund them.

Yet a reverse irony of sorts is now becoming apparent - one turned back on those who fund
and support the non-science behind the psychosocial approach to ME.

An irony where the demand from UK patients to participate in these new WPI UK studies, or
in Dr Chia's enteroviral testing - and Dr Lerner's, Dr Peterson's or Professor De Meirleir's
testing and treatment regimes - all demonstrate that decisions and responsibility for ME
research and healthcare is no longer solely in the domain of these uncaring, unrepresentative
and unelected offcials but is taken back to the people.

A reverse irony where these same UK patients are themselves so desperate to get better that
they grab on to the hope brought about by an institute in America (WPI) whose UK research
is partly funded by one of the smallest, non-subscription based charities in the UK (Invest in
ME).

The WPI may or may not prove causality or implication for the XMRV virus. But what they
have done is to provide hope that biomedical research, proper science and dignity for patients- all key elements of a longer term strategy - will overcome the intransigence, apathy and
deceipt of those who have been instrumental in retaining a status quo of inactivity. And this is
what makes the establishment organisations and individuals scared.

Research such as the WPI study in the UK, using IiME's comparatively meagre Biomedical
Research Fund, is performing something which the establishment and those who are
employed by the establishment to cast doubt, cannot contain.

It is giving patients hope and influence.

In our letter to the Prime Minister in July 2009 [click here] we reminded him of his words
from the previous year whilst discussing the future National Health Service -
'It will not be the NHS of the passive patient - the NHS of the future will be one of patient
power, patients engaged and taking greater control over their own health and their healthcare
too.'

In a remarkable twist certainly not envisaged in the spin of Gordon Brown's original policy
statement, patients are being engaged and taking greater control over their own health. Yet it
is not the NHS or the UK government who are shaping the future of healthcare for UK ME
patients.

Instead it is a "small pathology lab" in Nevada.

IiME would agree for once with the Prime Minister - Power to the Patients.

"patients engaged and taking greater control over their own health and their healthcare too.'

This part is certainly true, most of us are left to fend for ourselves and receive no treatment whatsoever from the NHS

 

[ukxmrv]

I'm really pleased that the WPI are to test the first 50 samples first and then will continue with the rest. They are taking an enormous risk by letting 2 other labs doing the testing for this study. Anything could happen. The two labs find no XMRV in the samples. People need to be prepared for all the dips of this horrible roller-coaster.

Anything could go wrong in the process including simple things like the wrong blood tubes being used or the blood being damaged in transit. It makes sense to test the "procedure" with these first bloods so when the remainder come through we know that all is well.

We need this done really throughly. I want Dr Mikovits to work closely with the labs and make sure that they have the right equipment and the right materials that they need to do the job. This could be considered as a pilot study before the majority of bloods are drawn.

This is a study and the testing is being done for the benefit of us all. When I was involved with other research projects I didn't get any results back and I had no idea when the study would appear in a medical journal. Those who are giving blood here are making a sacrifice of their time, health etc and I really do appreciate that. Also appreciate that the stress of waiting, worrying and hoping is not good for their health as well.

What I don't want to occur is another Elaine Defreitas. I lived through that rollercoaster as well. Don't want to be here in another 20 years complaining that it was all rushed and we could have done it better/slower.

 

[fingers2022]

Another thing that I can't find a link to is the Invest in ME newletter section about the WPI testing. I've been looking to see if it is posted anywhere else but couldn't see it yesterday. It certainly told me things I didn't know before so I will have a final scout around and if I don't find it on the board today I'll add it to this thread later on.

Hi fds, bit late to tell you now, but this link was posted at xmrvweb.me.uk on Saturday

 

[fingers2022]

I'm really pleased that the WPI are to test the first 50 samples first and then will continue with the rest. They are taking an enormous risk by letting 2 other labs doing the testing for this study. Anything could happen. The two labs find no XMRV in the samples. People need to be prepared for all the dips of this horrible roller-coaster.

Anything could go wrong in the process including simple things like the wrong blood tubes being used or the blood being damaged in transit. It makes sense to test the "procedure" with these first bloods so when the remainder come through we know that all is well.

We need this done really throughly. I want Dr Mikovits to work closely with the labs and make sure that they have the right equipment and the right materials that they need to do the job. This could be considered as a pilot study before the majority of bloods are drawn.

This is a study and the testing is being done for the benefit of us all. When I was involved with other research projects I didn't get any results back and I had no idea when the study would appear in a medical journal. Those who are giving blood here are making a sacrifice of their time, health etc and I really do appreciate that. Also appreciate that the stress of waiting, worrying and hoping is not good for their health as well.

What I don't want to occur is another Elaine Defreitas. I lived through that rollercoaster as well. Don't want to be here in another 20 years complaining that it was all rushed and we could have done it better/slower.

That's one perspective, ukxmrv, but I would have thought that if the procedures work and they are well-defined and communicated, then any lab worth its salt ought to be able to follow them. I may be wrong, as I know very little of what goes on in labs, so apologies if this statement is bollocks.

An alternative perspective is that the objectives of the study can possibly be achieved with 50 samples. Logic tells me that the objectives of the study could in theory be achieved with one sample if it's positive.......unless there's an error rate in the testing, but we are told that there isn't.

So, 50 samples could conclude the exercise.....and very soon. If there's an incidence of positives, then further research can proceed. If all negative, no research, and no point in drawing any more blood.

From what I have seen, WPI and Dr.Mikovits operate honourably, and therefore, if there are positives in the first 50, I would expect them to honour the commitment to test the rest of us in the study (I'm in, but not in the 50). However, what I'm really hoping for is a swift conclusion, so that we can all move on in the indicated direction.

 

[coxy]

I would be happy not to be tested if the 50 Ashford ones come out negative, would be no point i presume.

 

[fingers2022]

"patients engaged and taking greater control over their own health and their healthcare too.'

This part is certainly true, most of us are left to fend for ourselves and receive no treatment whatsoever from the NHS

Hi valia
I think you meant it's desirable rather than true. I have recently engaged with a NHS primary care trust offering them a very effective means of engaging with patients and public and acting upon the input. We have run an acknowledged successful project using the approach. However, the feedback we now have is that it can't be taken further as "it's too much work" or "we would actually have to do something about it".

What they want is something that allows them to tick the engagement boxes and achieves good PR, not something which is effective in driving strategy and redesign. Why work so hard when you can hang onto your persions for less effort?

 

[Knackered]

So, 50 samples could conclude the exercise.....and very soon. If there's an incidence of positives, then further research can proceed. If all negative, no research, and no point in drawing any more blood.

From what I have seen, WPI and Dr.Mikovits operate honourably, and therefore, if there are positives in the first 50, I would expect them to honour the commitment to test the rest of us in the study (I'm in, but not in the 50). However, what I'm really hoping for is a swift conclusion, so that we can all move on in the indicated direction.

Judy sent me an email yesterday, everyone will be tested. All 225 of us.

 

[valia]

Hi valia
I think you meant it's desirable rather than true. I have recently engaged with a NHS primary care trust offering them a very effective means of engaging with patients and public and acting upon the input. We have run an acknowledged successful project using the approach. However, the feedback we now have is that it can't be taken further as "it's too much work" or "we would actually have to do something about it".

What they want is something that allows them to tick the engagement boxes and achieves good PR, not something which is effective in driving strategy and redesign. Why work so hard when you can hang onto your persions for less effort?

Hi fingers, sorry I meant true, but I pounced on half a sentence and should have taken out the engaged bit.

"patients engaged and taking greater control over their own health and their healthcare too.'



What I meant was that we have been forced to take control of our own health and healthcare as we receive no help from the NHS.

 

[fingers2022]

Hi fingers, sorry I meant true, but I pounced on half a sentence and should have taken out the engaged bit.

"patients engaged and taking greater control over their own health and their healthcare too.'

What I meant was that we have been forced to take control of our own health and healthcare as we receive no help from the NHS.

The extract is:

In our letter to the Prime Minister in July 2009 [click here] we reminded him of his words
from the previous year whilst discussing the future National Health Service -
'It will not be the NHS of the passive patient - the NHS of the future will be one of patient
power, patients engaged and taking greater control over their own health and their healthcare
too.'

......and I'm really pleased you picked it out valia. It's possibly a bit off topic on this thread, but hey, something to do whilst we're waiting.
The meaning of the above being that the NHS will listen to patients and deliver the services we need.
In reality, they go through the motions of being seen to listen, but do not act an the input. Certainly not as effectively as they might do if they could organise themselves into working sytematically (and hard).....and I don't mean the frontline staff, many of them are fantastic.

 

[bananaman]

So, 50 samples could conclude the exercise.....and very soon. If there's an incidence of positives, then further research can proceed. If all negative, no research, and no point in drawing any more blood.

From what I have seen, WPI and Dr.Mikovits operate honourably, and therefore, if there are positives in the first 50, I would expect them to honour the commitment to test the rest of us in the study (I'm in, but not in the 50). However, what I'm really hoping for is a swift conclusion, so that we can all move on in the indicated direction.

The 50 blood samples so far have been taken from people that have been able to get to the Hospital under their own esteem. There are 100 people that are home bound that have not contributed to the study yet that are the severely affected and who will have their blood taken at their bedsides.

 

[Abraxas]

Judy sent me an email yesterday, everyone will be tested. All 225 of us.

Thanks for this Knackered.

 

[fingers2022]

The 50 blood samples so far have been taken from people that have been able to get to the Hospital under their own esteem. There are 100 people that are home bound that have not contributed to the study yet that are the severely affected and who will have their blood taken at their bedsides.

That's a fair point banana. So you are saying first 50 may not be reresentative.
I take back what I said about not testing further if all 50 negative. Lets hope it's 100% or at least > 50, then we're quids in, as it were.

ATB
Steve

 

[VillageLife]

The 50 blood samples so far have been taken from people that have been able to get to the Hospital under their own esteem. There are 100 people that are home bound that have not contributed to the study yet that are the severely affected and who will have their blood taken at their bedsides.

That's a fair point banana. So you are saying first 50 may not be reresentative.
I take back what I said about not testing further if all 50 negative. Lets hope it's 100% or at least > 50, then we're quids in, as it were.

ATB
Steve

Cant at all agree with this,
I made it to Ashford but to be honest I shouldn't of gone, everyone here knows how sick people with CFS are, I should think most people that went to Ashford felt so ill that day, they probably felt as ill as some people who were actually inpatients in the hospital But yet CFS patients are walking wounded, walking around Ashford Hospital, when really they are so ill they should be inpatients.... We are left to just get on with terrible illness.

And yes I've been bed bound off and on these past 11 years of having CFS, at the moment I'm able to walk but my quality of life and suffering is ridiculous for a 25 year old.

I'm not sure how we can define this illness, Bed bound patients are clearly very ill...walking wounded CFS patients feel more ill then other illnesses, so if you ask me, bed bound or not, our level of sufferering with CFS is still worse then if we had some other illness.

Did I go to Ashford, Yes....Should I have gone....No.

 

[fingers2022]

Cant at all agree with this,
I made it to Ashford but to be honest I shouldn't of gone, everyone here knows how sick people with CFS are, I should think most people that went to Ashford felt so ill that day, they probably felt as ill as people who were actually inpatients in hospital beds, or people in A & E But yet CFS patients are walking wounded, left to just get on with terrible illness, some of us did manage to go but since the blood draw, I have had one of the worst relapses in years.

And yes I've been bed bound off and on these past 11 years of having CFS, at the moment I'm able to walk but my quality of life and suffering is ridiculous for a 25 year old.
I'm not sure how we can define this illness, Bed bound patients are clearly very ill...walking wounded CFS patients feel more ill then other illnesses, so if you ask me, bed bound or not our level of sufferering with CFS is till worse then if we had some other illness.

Did I go to Ashford, Yes....Should I have gone....No.

VL, well done for making the draw, and thank you.

Banana's point I think is that the first 50 may not be representative, and therefore we may not be able to draw a conclusion from it.

You are saying that the fact that people made it to Ashford, does not mean they are not severely affected.

I would also like to add, that the fact that someone is not severely affected (my own case for example), does not mean that they cannot have XMRV (possibly not my own case, we'll see).

My own hopes are that we get a result, then we can have a follow up study which looks at all of the parameters, then we can draw some real conclusions and move towards appropriate treatments.

If this doesn't happen, I am not discouraged, because we have momentum to look elsewhere. Win-win.

ATB
Steve

 

[fingers2022]

VL, well done for making the draw, and thank you.

Banana's point I think is that the first 50 may not be representative, and therefore we may not be able to draw a conclusion from it.

You are saying that the fact that people made it to Ashford, does not mean they are not severely affected.

I would also like to add, that the fact that someone is not severely affected (my own case for example), does not mean that they cannot have XMRV (possibly not my own case, we'll see).

My own hopes are that we get a result, then we can have a follow up study which looks at all of the parameters, then we can draw some real conclusions and move towards appropriate treatments.

If this doesn't happen, I am not discouraged, because we have momentum to look elsewhere. Win-win.

ATB
Steve

Sorry to quote myself, I've never done that before.

I forgot to add, if/when XMRV pans out, we don't need to worry about side effects of antivairals, as we have the Lightning Process. Also, it only takes 3 days.

What a wonderful thought........

 

[JAS]

I would also like to add, that the fact that someone is not severely affected (my own case for example), does not mean that they cannot have XMRV (possibly not my own case, we'll see).

Agree with Fingers on this, I am not bedbound, I am perhaps sofa bound for a week or two with a crash but after that I can start to function albeit limited. I was tested by VIP and I am XMRV positive, I do not believe the severity of the illness determines whether you are more likely to have XMRV or not. All those that tested at Ashford in my view and from my experience have as much chance as having XMRV as those who are sadly housebound....thank you to all those that tested at Ashford.