Xmrv research uk

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Simon Wessely, is Professor of Psychiatry at King's College London. We have as much chance of this being a fair, unbiased study as we have of sprouting wings and flying to the moon. I expect this study is being implemented to discredit the WPI findings.

What will the criteria be for selecting patients? Will, as usual with M.E./CFS research in the UK, the patients with neurological M.E. be weeded out and only those without M.E. but with mild mental disorders be left to study.
 

garcia

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Min, I must be missing something. Simon "Weasel face" Wessely doesn't have anything to do with the above linked phd study.

It is a study into the role of XMRV in human diseases from the department of infection & immunity, University College London.
 
C

cold_taste_of_tears

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Simon Wessely, is Professor of Psychiatry at King's College London. We have as much chance of this being a fair, unbiased study as we have of sprouting wings and flying to the moon. I expect this study is being implemented to discredit the WPI findings.

What will the criteria be for selecting patients? Will, as usual with M.E./CFS research in the UK, the patients with neurological M.E. be weeded out and only those without M.E. but with mild mental disorders be left to study.
Min is correct I'm afraid.

Wessely's choking odour reaches far and wide in the city of London. UCL contains the National Hospital for Neurology and Neurosurgery. The best neuro hospital in europe, and even the world.
Who is going to believe what you say, if you go to the best, and report it's garbage? It is the best state hospital for sure, but not if you have ME, GWS, MCS etc - then it's the worst.

I do commend the OP you for finding the research and trying to help. One must remember that something is rotten in the state of Denmark though - and this starts and ends with those who work in the NHS for the state. A state health care system that denies all care for people with severe neuro immune disease since day one, isn't going to change. There are too many people like me preparing court cases for them to admit they were wrong and had a hidden agenda. CFS/ME will remain mental illness, and possibly XMRV will become XAND. And the genuine ME patients will becomes XAND patients and we will be expected to say nothing and accept the torture of the present and past

UCL is renoun for abusing patients with severe ME in the name of 'Neuro Psychiatry'. (Note I say severe). Severe people cannot get off the bed and walk, protest. They remain static.
They held me in UCL in a unit there, along with other people (not when I was there) due to our 'belief' we have ME. This was because we were bed bound, and not able to work. Work is all they talk about. Do you have a 'recovery plan'. Why not? Why don't you work? Our patients recover in a few weeks with CBT/GE/Pacing, why don't you? That kind of thing.

It's nothing like you'll ever experience because it's done behind closed doors. The rest of the patients are drugged and mentally ill - they won't defend you, at best they ignore you, at worst, they attack you. You're on your own behind a magnetic locked door. With no access to medical care (doctor). If you get chest pain and can't breathe - they leave you in the room on your own. No joke. Try that for size guys. We are used to going to ER in an emergency, not having 'Nurses' (not real nurses) walk off or tell you it's all in your mind, as they do in UCL.

They altered my 14+ year history at the time of severe ME to 'Somatization Disorder' and told me to my face NEVER to use 'that word on this ward'. ''ME''.
I have never before had such agression that when I say ME, someone holds their hand up infront of me, like a stop sign. Totally bizarre yet very scary when you're unable to sit upright in an open ward,
sleep, or get food or water. They adore watching you attempt it, it amuses them. It 'prooves' you're a malingerer because you do it, as you need to survive.

Simon Wessely's CBT expert was drafted in from Kings to UCL to 'cure' me with CBT by challenging 'Automatic Negative Thoughts'. So our point is, that if this is what goes on in UCL - their 'CFS' patients will be people who are mentally ill, and report chronic long term tiredness. Chronic long terms tiredness is the DOH/NHS definition of 'CFS/ME'. It's on the NHS website. NHS Choices. Look yourself.

Don't expect this XMRV study to be on our side at all. Why would they admit that mentally ill 'ME' patients have been infecting the national blood supply and abused by their OWN HOSPITAL?
No way is that going to happen. UCL is so corrupt they claim me of self discharging. How can a severe ME patient walk out of a hospital in a strange city with no transport? Insane. More
insane is they leave my discharge note in my medical records - thus proving I didn't self discharge. They write what they like, as they hope you'll die before you find out.

I say these words, because when someone can look you in the eye, who works at UCL (where this research is done) and tell you that if they kill you, they'll 'apologise' then you know - the game is up, and you realise crystal clear what is happening. Imagine that for 8 weeks and you cannot get of the door. Imagine being threatened, called a 'fool' to your face infront of the whole staff, having people withdraw medical care when your blood pressure is over 100 diastolic, pulse 170 when in pain. They literally, walk away from you,

Only a psychiatric ward can do this, in a normal NHS ward you can complain press the emergency buzzer if need be. In these places there are no buzzers, no nurse calls, and no nurses.
There are spies called Psychiatric nurses who in place of a BP monitor hold clip-boards. They stand in your room and scribble down what you say, and write things like 'good appearence, combed his hair, smiled'. Or 'talked about Dr x', or 'Seemed to be having an argument with x'.. etc etc. Nothing to do with medical care, and everything to do with surveillance.

Big brother is watching you, literally. This happens to severe ME patients as we speak - this was for me, only a few years ago, not back in the 80's.
UCL does this, and this is where the research into XMRV will come from into the life-style choice (Their words).. 'CFS/ME'.

People who view us as scum and filth - will hardly produce research that's going to help us. Think about it.
You cannot beat the state and I am as vile as they describe.
 

Scavo86

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Min is correct I'm afraid. Wessely's odour reaches far and wide in the city of London. UCL contains the National Hospital for Neurology and Neurosurgery. This is renoun for abusing patients with ME in the name of 'Neuro Psychiatry'. They locked me up in UCL in a unit there, along with other people due to our 'belief' we have ME. This was because we were bed bound, and not able to work. Work is all they talk about. Do you have a 'recovery plan'. Why not? Why don't you work? Our patients recover in a few weeks with CBT/GE/Pacing, why don't you? That kind of thing. It's nothing like you'll ever experience because it's done behind closed doors. The rest of the patients are drugged and mentally ill - they won't defend you. You're on your own behind a magnetic locked door. With no access to medical care (doctor). If you get chest pain and can't breathe - they leave you in the room on your own. No joke. Try that for size guys. We are used to going to ER in an emergency, not having people walk off or tell you it's all in your mind, as they do in UCL.

They altered by 14+ year history at the time of severe ME to 'Somatization Disorder' and told me to my face NEVER to use 'that word on this ward'. ME. I have never before had such agression that when I say those words ME, someone holds their hand up infront of me, like a stop sign. Totally bizarre yet very scary when you're unable to sit upright in an open ward.

Simon Wessely's CBT expert was then drafted in from Kings to UCL to 'cure' me with CBT by challenging 'Automatic Negative Thoughts'. So our point is, that if this is what goes on in UCL - their 'CFS' patients will be people who are mentally ill, and report chronic long term tiredness. Chronic long terms tiredness is the DOH/NHS definition of 'CFS/ME'. It's on the NHS website. NHS Choices. Look yourself.

Don't expect this XMRV study to be on our side at all. Why would they admit that mentally ill 'ME' patients have been infecting the national blood supply and abused by their OWN HOSPITAL? No way is that going to happen.

I do commend the OP you for finding the research and trying to help. One must remember that something is rotten in the state of Denmark though - and this starts and ends with those who work in the NHS for the state. A state health care system that denies all care for people with severe neuro immune disease since day one, isn't going to change. There are too many people like me preparing court cases for them to admit they were wrong and had a hidden agenda. CFS/ME will remain mental illness, and possibly XMRV will become XAND. At the ME patients will becomes XAND patients and we will be expect to say nothing and accept the torture of the present and past

I say these words, because when someone can look you in the eye, who works at UCL (where this research is done) and tell you that if they kill you, they'll 'apologise' then you know - the game is up, and you realise crystal clear what is happening. Imagine that for 8 weeks and you cannot get of the door. Imagine being threatened, called a 'fool' to your face infront of the whole staff, having people withdraw medical care when your blood pressure is over 100 diastolic, pulse 170 when in pain. They literally, walk away from you,

Only a psychiatric ward can do this, in a normal NHS ward you can complain press the emergency buzzer. In these places there are no buzzers, no nurse call, and no nurses. There are spies with clip-boards who scribble down what you say, and write things like 'good appearence, combed his hair, smiled'. Or 'talked about Dr x', or 'Seemed to be having an argument with x'.. etc etc.

Big brother is watching you, literally. This happens to ME people as we speak, this was for me, only a few years ago, not back in the 80's. UCL does this, and this is where the research into XMRV will come from into the life-style choice (Their words).. 'CFS/ME'. People who views us as scum and filth - will hardly produce research that's going to help us. Think about it.
That is a sobering account to read cold_taste_of_tears and I would have hated to go through that experience, it sounds like you were subjected to neanderthal practice, quite shocking considering that we are in the 21st century! However, can we not be buoyed by the fact that the researchers are first and foremost virologists, immunologists and microbiologists - at some point the tide has to turn and I am hoping we are currently beginning to see that happen.
 
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Are the ME Research UK and Ramsay Research Trust's studies, if they can fund them, going to be independent of this?
 
A

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Wessley

If and when the causal link between XMRV and CFS is proven, you guys in the UK need to go all out with protests calling for Wessley's head.

I'm not familiar with what advocacy groups you have over there--but they all ought to band together and organize massive pickets at his home and place of business, calling for him to be run out of town.
 
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I understand that the xmrv trial referred to will take patients from St Barts, where Peter White is professor of psychiatry.

If this is true, then the patients will have been selected by the Oxford criteria (invented by the psychiatric profession to include large numbers of patients with mental disorders such as mild depression) instead of the Canadian criteria. They will not have neurological M.E. as classified by the World Health Organisation. The study will be a complete farce, as are all taxpayer funded UK studies into M.E./CFS .
 

MEKoan

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If and when the causal link between XMRV and CFS is proven, you guys in the UK need to go all out with protests calling for Wessley's head.

I'm not familiar with what advocacy groups you have over there--but they all ought to band together and organize massive pickets at his home and place of business, calling for him to be run out of town.
They have already done something like this. UK advocates have been in the streets for years now. When you consider how hard it is, given the nature of the illness, to accomplish this, and you add the fact that the UK is smaller than the US, their actions have been remarkable.

There have been pickets outside conferences for years and what this has gotten them, in part, is accused of harming the cause of the mentally ill because they refuse that diagnosis.

The heartless abuse of ME patients in the UK, including helpless children, is a scandal of epic proportions. Reeves is a CFS supporting pussycat compared to Wessely.

Strange but true.

Koan
 

Martlet

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Although I lived in the UK, I did not have this awful experience because I was diagnosed on a US air force base. The first doctor I saw on base was British. I went to him with a rash all over my stomach.

Bless him, he looked at the rash and scratched his head, then said, "That isn't concerning me very much, but how long have you had cognitive problems?"

Tears of gratitude filled my eyes as I said, "We were traveling in the USA when I went down with the flu...."

From this doctor, in ER, it was straight to family practice for a battery of tests. All were normal or "borderline." I remember sitting there and saying to the doctor, "Then it must be all in my head."

"No," he said, "On the contrary. You are a very sick woman but I would prefer Internal Medicine to make the diagnosis."

An hour with an internist who went to all the painful places as if he knew they were there, and who asked all the right questions and felt all the right glands, and I had a diagnosis of ME.

He did ask if I would mind a psychiatric evaluation. I'd have been evaluated by a gorilla if I'd thought it would make me well! I went along for that and the psych agreed that it was physical. Then they ran an HIV test, just to be sure, given that I was transfused ten years earlier. That was negative.

So, I set off in the UK with some very, very good doctors. Not that they could do much for me, but the psych talked me into using my wheelchair before I crashed, rather than waiting until the pain was too much to bear.

And with that good support from physicians, I was able to face the rest of the unbelieving world a lot better prepared than most Brits. I started a support group in my area and heard terrible stories. Tales of women being told they needed to go and have more children, or being told they were just tired from too many children. There was one case in our area of a man who left the (British) psychiatrist's office and throwing himself off a bridge.

There was the story of how disability benefit claimants had to go in person to see a tribunal. The office was on the ground floor, but they blocked off access through that route, forcing claimants to climb stairs, walk a corridor, then come back down stairs at the other side of the building. Of course, the sickest ME people couldn't make it, so were declined benefits for not turning up at their appointment, while those who did make it were told that if they could climb the stairs, they did not need benefits.

I could go on with horror stories about the way British pwcs are treated, but I think everyone already knows how disgusting it is.
 

Dolphin

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I understand that the xmrv trial referred to will take patients from St Barts, where Peter White is professor of psychiatry.

If this is true, then the patients will have been selected by the Oxford criteria (invented by the psychiatric profession to include large numbers of patients with mental disorders such as mild depression) instead of the Canadian criteria. They will not have neurological M.E. as classified by the World Health Organisation. The study will be a complete farce, as are all taxpayer funded UK studies into M.E./CFS .
Where did you hear this?

This is information I saw posted on a list today:

http://nhsblogdoc.blogspot.com/2009/10/myalgic-encephalomyelitis-me-science.html

http://nhsblogdoc.blogspot.com/

Suzy Chapman <http://meagenda.wordpress.com/> said...

It has been reported on several message boards that at the October meeting
of the All Party Parliamentary Group on ME, Mr Colin Barton (Chair, Sussex
and Kent ME and CFS Society) had stated that patients from Barts were to be
involved in (unspecified) XMRV studies.

I have contacted Mr Barton, this morning, for confirmation of these reports.

I am advised by Mr Barton that Barts have no immediate plans to replicate
now as two other London groups are already doing this, as well as the CDC.

Mr Barton was unable to confirm whether the "two other London groups"
included the UCL PhD project, supervisors: Prof G Towers and Dr P Kellam.

In October, Dr Jonathan Kerr (St George's University of London) was awarded
funding by the US NIH's National Institute of Allergy and Infectious
Diseases.

I have no further information on UK replication studies and no information
on "trials".

Press Release, below, in two parts with apologies if this has already been
posted:

Part One:

http://www.prohealth.com/library/showarticle.cfm?libid=14948

NIH Bets $1.6 Million on Continued ME/CFS Research by Drs. Mikovits & Kerr
October 21, 2009

Dr. Judy Mikovits (principle investigator) and the Whittemore-Peterson
Institute, with collaborator Dr. Jonathan Kerr, have been awarded a 5-year,
$1.6 million grant from the NIH's National Institute of Allergy and
Infectious Diseases (NIAID) to support ongoing research into the disease
mechanisms of chronic fatigue syndrome. Dr. Kerr is associated with St.
George's College in London.

The award was announced Sep 24 on the WPI website, before news of the
CFS-associated XMRV retrovirus was published Oct 8 by the journal Science.

A description of the project (# 1R01AI078234-01A2) is now included in the
NIH's Research Portfolio Online.

Key Details from the NIH's Project Description

. Title: "New Strategies to Decipher the Pathophysiology of Chronic Fatigue
Syndrome."

. Objective: "To provide significant insight into the disease mechanisms of
Chronic Fatigue Syndrome so accurate testing and specific treatments can be
developed with a goal of curing the disease and preventing life-threatening
complications."

. Timing: start date Sep 28, 2009; projected end date, Aug 31, 2014.

. Funding: First fiscal year funding $335,600; total funding $1.6 million.

. Project Description provided by applicant: (excerpt formatted for greater
legibility, as follows).

______________________________

"Chronic Fatigue Syndrome (CFS) is a complex disease estimated to affect
between 0.5%-2% of the population in the Western world.

Its pathogenesis is thought to involve both inherited and
environmental(including viral) components, as with other chronic
inflammatory diseases, such as multiple sclerosis, rheumatoid arthritis, and
atherosclerosis.

Consistent with this chronic inflammatory context, CFS patients are known to
have a shortened life-span and are at risk for developing lymphoma. We
hypothesize that chronic inflammatory stimulation from active and recurrent
infections of multiple viruses on a susceptible host genetic background
leads to the pathogenesis characterized by CFS.

The overall goal of this research project is to define these viral and host
parameters in European and American cohorts of CFS patients that correlate
with distinct disease phenotypes, including the development of mantle cell
lymphoma (MCL) in a subgroup of the American cohort.

In Aim 1) we will identify and confirm novel viral infections in European
and American CFS patient cohorts.

[continued in next comment]

Monday, November 02, 2009 10:26:00 AM

AnonymousSuzy Chapman <http://meagenda.wordpress.com/> said...

Press Release Part Two:

1.1) We will use two complementary methods for detection of novel virus
mRNA: massive parallel signature sequencing (MPSS) and a custom DNA
microarray.

1.2) Quantitative polymerase chain reaction Q-PCR will be used for
confirmation of virus gene expression.

1.3) Immortalized cell lines will be developed to isolate virus and
elucidate links between virus and host cell gene expression.

In Aim 2), we will elucidate genetic factors of susceptibility and the
dysregulation of the host defense system. Specifically, we will determine:

2.1) PBMC gene expression of 88 human genes previously confirmed as being
differentially expressed in CFS

2.2) Serum chemokine and cytokine profiles using multiplex suspension
antibody arrays on a Luminex platform

2.3) HLA, KIR genotypes and whole genome SNP profiles

2.4) Defects in the type I Interferon signaling pathway.

In each subaim both cohorts will be compared to normal and disease controls
using specimens of serum and PBMC taken at multiple time-points from
individual patients and taken from our unique and extensive sample
repository.

This study:

. Will provide information necessary for development of treatment and
diagnostic strategies for distinct subgroups of CFS patients,

. And may identify novel virus associations, genetic signatures, and
biomarkers, which can predict the development of MCL, thus enabling use of
preventive therapeutics."
 
K

_Kim_

Guest
Letter from Charles Shepherd

This was posted today as a WPI facebook discussion topic and thought that it should be reprinted here.

Christine

Thanks for forwarding this letter to MPs.

The MEA is obviously in contact with retroviral researchers, politicians, the Medical Research Council and DoH civil servants on this issue and I spent much of Thursday dealing with XMRV in London.

I'll be updating the MEA position statement later in the coming week to include some of the feedback we are receiving from various sources.

In the meantime, it is firstly worth noting that:

We now have at least four good UK research groups who are all very keen to follow up these findings in various ways - ie finding out what this virus is doing (or not doing); supporting or refuting the American findings on prevalence in both patients and healthy controls etc.

At present, finance does not appear to be a significant short term problem here in the UK - and the MEA has made it very clear that funding applications to our RRF are welcome but the researchers I have spoken to so far are all OK with the short term funding position.

The MRC Expert Group on ME/CFS research will be discussing XMRV at our Workshop in two weeks time.

Secondly, there is an immediate need to:

Try and confirm or refute the American figures on prevalence in ME/CFS patients and healthy controls using both stored and 'fresh' clinical samples (the latter is very important).

Develop and agree on a blood test or (more likely) a collection of blood tests that will confirm the presence of this virus

Establish what this virus, if present, is doing (or not doing) in the body
Get some information and co-ordination on what different international research groups are intending to do

I'm confident, given the interest in this virus (and the constructive questioning of the study), and my discussions last week, that this type of laboratory based research will be able to proceed fairly quickly here in the UK

When we have some answers (hopefully not too conflicting) clinicians and researchers can, if appropriate, then move forward with testing people and setting up clinical trials of treatment.

This info may help you regarding how to follow up the parliamentary angle. I will be meeting Dr Des Turner, Chair of the ME APPG, on Tuesday this week.

It may be that we will need a proper parliamentary campaign once the situation becomes more certain.

Apologies - but I won't be able to get into detailed on-going correspondence on XMRV. There is just too much email on XMRV pouring into my in-box!

Regards

Dr Charles Shepherd
Hon Medical Adviser, MEA
 

Mark

Former CEO
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Don't let them off the hook!

I'm changing my tune somewhat, based on the latest information I've been reading, and on a renewed respect for what kind of suppression of the studies may be possible.

It may be that we will need a proper parliamentary campaign once the situation becomes more certain.

Regards

Dr Charles Shepherd
Hon Medical Adviser, MEA
Understandable approach from an organisation with a reputation to protect, but there comes a time when you need to stick your neck out to win the race, and the situation is already certain to me now I've studied the evidence in depth. The UK public studies will manage to not replicate WPI findings unless we fight for it, the CDC too by the sounds of it; that's 3/7 down for starters, and we're nearly 50-50, perhaps already good enough for an inconclusive 'study of studies'. I think we need to somehow lay down markers so that when they report, we can say "I told you so", and I think we need to use FOI and parliamentary campaigning and whatever pressure we can generate to force the studies' dirty tricks into the light. If we don't, and the UK and US studies succeed in muddying the waters, who knows how many more years they can spin all this out? What they did to DeFreitas they can do again on a bigger scale, but FOI and hard campaigning really can bring things out that they don't want in the open. The Independent are solidly on our side...Daily Mail too maybe?
 

Martlet

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I think we need to somehow lay down markers so that when they report, we can say "I told you so", and I think we need to use FOI and parliamentary campaigning and whatever pressure we can generate to force the studies' dirty tricks into the light.
I absolutely agree. My time spent in politics taught me that reactive campaigns do nothing. We need the public on side, and that takes proactive campaigning.
 

Alice Band

PWME - ME by Ramsay
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I was wondering what people would suggest as our next step in the strategy to ensure fair research trials are held.

We already have people who will write letters and a smaller number who will turn up to public meetings and protests.

Although Barts may not be holding the trials, I have personally spoken to people involved there and it has been discussed. It may have only been along the lines of providing patients to another trial or just a general discussion of damage limitation over the virus publicity (and away from the CBT/GET model).

It may have also been damage limitation over the PACE study being published and then "lost" over the excitment of the virus discovery (oh happy day! but unlikely).
 

Dolphin

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Dude, you just took the words right out of my mouth. We are at a critical juncture here. If we don't get fair studies now, this retroviral topic will not be revisited for another 20 or 30 years. Maybe this XMRV finding is significant, maybe it isn't, but if we don't have fair research into its connection with ME/CFS we will never know. I think we need to put pressure on our advocacy groups all around the world to explain to their members and to the media that the WPI could be right and yet proven wrong by researchers who are using diagnostic criteria that bear no relationship to patients with ME/CFS. Everyone needs to know, before further research is published, that the CDC is using an indistinct cohort. We need to know what diagnostic criteria the other researchers are using so we can be prepared for their false results too.

I'm not saying that people with Reeves disease are worthless and should never be studied. But in this first round of research we need as many studies as possible to support the WPI findings. I think the best chance of replication is in a study that uses the same type of patients Canadian diagnostic criteria/severely affected and the same detection technique. Further research into other conditions would of course be very valuable and could open up a new field of medicine, but if we can't get one good study to confirm the WPI findings in people with ME/CFS, we won't be a part of this new field and none of the funding will come our way. To top it off, if Mikovits' work isn't replicated, any further work she does on ME/CFS will probably be looked on with suspicion. Once the CDC discredited her findings, Elaine De Freitas tried to have further research published and every journal rejected her papers.

I think we need to start by writing to our advocacy groups in the UK, US, Australia, Europe to ask them to get information about the diagnostic criteria used in these current studies. Then we need to move on to the media to tell them which studies are using unscientific, indistinct criteria. This all needs to happen now before results come out so we don't look like sore losers.

I'm not asking for a study that proves the WPI right, I'm just asking for a study that I can believe, whether they find XMRV or not.
This is a bit of a lazy post but one thing people could do is draw people's attention to the petition:
CDC CFS research should not involve the empirical definition (2005)
http://www.ipetitions.com/petition/empirical_defn_and_CFS_research/index.html

It contains links to lots of information that is critical of the definition.

People could ask groups to highlight it in some way e.g. link to it and/or mention it.

And of course it shouldn't be forgotten that this definition has already been used for dozens of studies on CDC cohorts including two on child abuse. But an awful lot of people even in the ME/CFS community won't know about the flawed definition.