Kerr pulling out of XMRV research

[Mithriel]

This is part of their original memo.

Invest in ME have decided to work with another charity, ME Solutions, to
begin a fund-raising campaign for research to be performed by Dr Jonathan
Kerr and Dr Amolak Bansal of Epsom and St Helier hospital.

Dr Kerr has been working with Dr Mikovits from WPI and they have even been
awarded funding from USA's NIH.

Invest in ME wish to help Dr. Kerr's continued work and further the research
around XMRV and immune system dysfunction.

We knew there would be concerns around Dr Bansal's connection with the CNCC
clinic at the St Helier hospital. Some of the concern is understandable.
Invest in ME have also been critical of the government's CNCC clinics as not
being set up correctly to serve patients with myalgic encephalomyelitis. We
were also concerned that some of the information about ME on the Epsom and
St. Helier website was incorrect and we have suggested to Dr Bansal, via ME
Solutions, that it be removed or corrected.

However, the same department web site also states that - "The main research
interests of the department include NK cells and infertility, allergy,
immunodeficiency and the chronic fatigue syndrome." and "NK cell activation
and cytotoxicity are routinely performed within the department of Immunology
at St Helier Hospital."

So Invest in ME discussed this with Dr Kerr and ME Solutions. Dr Kerr's
respect for Dr Bansal's expertise in immunology convinced us to give our
support to this exciting new project. Dr Kerr has already collaborated with
Dr Bansal on ME/CFS research. It is worthwhile looking at the actual
research proposed. The important item is the research to be performed and in
this case we need to look to the future.

The title of the research project is "The role of XMRV in modulation of NK
cell cytotoxicity and NK cell gene abnormalities in ME/CFS patients"

The research is distinct in that it will relate the presence of XMRV in NK
cells with other CFS-associated abnormalities previously demonstrated in NK
cells. XMRV has been cultured from T, B and NK cells, but primarily targets
NK cells. NK cell dysfunction has previously been found to be abnormal in
ME/CFS, despite their numbers often being largely unaffected. Defects in the
innate immune system are thought to play a key role in the pathogenesis of
ME/CFS and these abnormalities may leave individuals susceptible to XMRV
infection. This study will relate the presence of XMRV in NK cells with
ME/CFS-associated abnormalities previously demonstrated in NK cells and
ME/CFS-associated gene abnormalities.

The research project also proposes to select patients according to the
Canadian criteria and the Fukuda criteria - thus standardising on the same
criteria being used by the WPI in its research. We believe this will help in
setting a baseline for future research. If one wishes to have research using
patient samples diagnosed according to the Canadian Criteria then one has to
start somewhere and we fully trust Dr Kerr in his commitment.

For this research project Invest in ME and ME Solutions will be able to make
joint grant applications - the reasoning being that two ME charities working
together to fund-raise will make it a more attractive proposition for
grant-giving bodies.

We would expect the majority of any funding for the project to come from
these grant applications but often a funding body wishes to see some funding
secured separately.

We welcome support and contributions from organisations who have funds for
biomedical research and who wish to contribute to XMRV research. We also
welcome support from individuals who are able and willing to support one of
the key ME researchers in the world today.

Invest in ME will be contributing to this project, as best we can, using our
Biomedical Research Fund.

Details here

http://tinyurl.com/yg899at


I'm not sure who ME solutions are.

Mithriel

 

[Mithriel]

I found this

From Suzy Chapman

In early 2005, Dr Amalok Bansal had been at the epicentre of the Liverpool,
and the Epsom and St Helier CFS Clinics job vacancy adverts debacle.

("Vacancy 2" appended).

Perhaps Invest in ME has forgotten this.


Dr Amalok Bansal is the Chief Scientific Advisor to ME Solutions:

http://www.mesolutions.org.uk/who-we-are/


Vivienne Parry (Sense About Science, Administrator of the funding arm of
GUS) is Patron to ME Solutions.

GUS funded the PRIME Project - a poor use of £320,000 if ever there was
one.

Ms Parry has a very low opinion of ME activism - according to Ms Parry we
are the reason why researchers do not want to get involved.

There are dozens of researchers from the field of liaison psychiatry and
psychosomaticswho apparently have no such qualms about applying for and
accepting funding. I guess some are born with tougher snouts than others.

I am very uncomfortable that ME Solutions has invited Ms Parry to be a
Patron to their organisation.

It isn't clear to me what the current funding situation is for this
proposed Kerr/Bansal collaboration announced, yesterday, by Invest in ME
and ME Solutions.

Have part funds already been secured and are Invest in ME and ME Solutions
looking to make up the difference, and if so what is the shortfall?

Or are these two organisations hoping to raise the total funding required
and if so what is the total amount required? How realistic is this aim?

Has some funding already been awarded by one or both of these
organisations, or by other funding sources, and if so how much and from
what source(s)?

Both organisations are calling for sponsors and donations. Why has none of
this been clarified for those considering making a donation?

Would either organisation clarify this?

It is bitterly ironic that Dr Kerr has collaborated in gene studies that
have used blood samples drawn from patients from the Dorset CFS Service
(formerly known as the "Wareham Clinic") which offers little more than OT
led group therapy CBT sessions and is intending to collaborate in a
proposed XMRV study with the Epsom and St Helier NHS Trust CFS Service,
about which there have been such concerns.

---------------

From Co-Cure, February 2005:

Job vacancy 2:

Employer: Epsom and St Helier NHS Trust

Job title: Highly Specialist Clinical Psychologist in Chronic Fatigue
Syndrome Management

Chronic Fatigue Syndrome Service, Sutton Hospital
Ref: HJUK/ZP/238

Managerially accountable to:
Dr Amolak Bansal (Consultant Immunologist) Service Manager for
Chronic Fatigue Syndrome Service

Professionally accountable to:
Dr Angela Tomkins Principal Clinical Psychologist, Chronic Fatigue
Syndrome Service

Closing date: 18 March 2005

For further details / informal visits contact:
Dr Angela Tomkins, Clinical Psychologist - Chronic Fatigue Service on
0208 2936 4152 or, Dr Hilary Rankin, Trust Professional Lead for
Clinical Health Psychology on 0208 296 4317

"As a result of a successful bid for government funding, an exciting
opportunity now exists for a newly or recently qualified Clinical
Psychologist to join an innovative new service for people with Chronic
Fatigue Syndrome. The successful applicant will contribute to the provision
of assessment, and individual and group therapies for patients across the
full age range in the local area."

"In addition to direct clinical work, the service has a remit to contribute
to the development and provision of education, training and support to
health professionals working with people with CFS in the local PCTs.
The service has links to a nationwide Network for CFS services to
support its service development initiatives."

"The multi-disciplinary team will comprise of a Consultant Immunologist,
Clinical Psychologists, Occupational Therapist, Physiotherapist and
Clinical Nurse Specialist amongst others. A Clinical Psychologist with
considerable experience of working with patients with chronic conditions is
already in post."

"WORKING ENVIRONMENT

The CFS Service provides an expert multidisciplinary assessment and
management service for people with persistent fatigue for whom medical
intervention is no longer appropriate.

Patients referred to the service often present with complex medical and
psychological problems, are highly distressed and may have difficulty
accepting and be hostile to the rationale for adopting a
cognitive-behavioural approach to the management of their fatigue.

Engaging these patients in the service requires sensitive discussion and
skilled multi-disciplinary management. The CFS Service aims to help people
with chronic fatigue to improve their quality of life, reduce distress and
health care usage and where possible, return to work through a
multidisciplinary cognitive-behavioural programme.

The CFS Service aims to develop both group and individual
multi-disciplinary programmes to extend services to those individual
patients who have challenging presentations including high levels of
distress and disability,interpersonal difficulties and co-morbid physical
and mental health problems that mean that a group management programme is
not suitable.

In addition, patients using this service may have problems of an intimate
nature eg sexual difficulties, history of trauma or abuse, which are not
suitable for treatment in a group setting.

Key result Areas

Clinical

1. Working with the principal clinical psychologist, to provide a
comprehensive, specialist psychological assessment for patients referred to
the CFS Service. This input will be based on the appropriate use,
interpretation and integration of complex data from a variety of sources
including psychological tests, self-report measures, rating scales and
semi-structured interviews with clients, family members and others involved
in the client's care.

2. To work closely with the multidisciplinary team to evaluate and
make decisions about treatment options, taking into account a range of both
theoretical and therapeutic psychological models and highly complex factors
concerning historical and developmental processes that have shaped the
individual or family.

3. To be responsible for helping to develop and for providing clinical
psychology input on a group management programme. This involves utilising
a range of skills including

� Delivering complex concepts and ideas to groups of patients

� Managing challenging group dynamics

� Managing and containing individual patients and group needs in a
highly sensitive manner

4. To provide appropriate advice on chronic fatigue management to,
often highly distressed, patients while at all times maintaining awareness
of professional boundaries.

5. For patients referred to individual psychological therapy programme
for chronic fatigue, to exercise responsibility for -

� Comprehensive highly specialist assessment and formulation of
patient's presenting problems

� Implementing a range of psychological interventions with
individuals, couples and families, continually adjusting and refining
psychological formulations drawing on different explanatory models and
maintaining a number of provisional hypotheses

� Employing methods based upon evidence of treatment efficacy.

� Discharge or referral on from the service

6. To communicate in a skilled and sensitive manner, information
concerning the assessment, formulation and treatment plans to patients and
other health professionals and to monitor progress during the course of
uni- and multi- disciplinary care.

7. Where patients present with multiple needs e.g. patients with
severe
mental health problems and persistent pain, to liaise with other local
specialist services eg mental health services to enable effective case
management.

8. To undertake risk assessment with distressed clients and to provide
advice to team members and other health professionals on psychological
aspects of risk assessment and risk management

9. To take an active role in the development of information and
educational materials for people with chronic fatigue.

10. To work with other members of the team to raise awareness of CFS
services and the efficacy of a self management approach to chronic fatigue
amongst Trust staff and other local services including GPs."



Suzy Chapman
http://meagenda.wordpress.com

 

[ukxmrv]

I've had contact with ME Solutions and have deep reservations about that organisation. Although the website looks good the person I met from ME Solutions didn't seem to have a clue about acute onset ME vs idiopathic fatigue. Not a problem or concern for everyone but one that stuck out for me.

http://www.mesolutions.org.uk/

There is also the involvement of Vivienne Parry

----------------------------------------------------------------------------

I've also had involvement as well with the St Helier/Epsom hospital and their NK cell testing funnily enough. Their tests did not match others I had abroad. Another red flag for me.

 

[Dolphin]

RE: Dr. Bansal

I read a report of a talk Dr. Bansal gave last year where he summarised the IACFS/ME conference 2009. He didn't hide at all the fact that CBT studies were presented that were negative nor did he try to "spin" the findings that I could see. He could easily not have mentioned them as there was plenty of other things to talk about.

Those job ads were 5 years ago and he might not have been involved in the wording. Apart from that, I don't recall seeing other indications that he is of the CBT School of Thought aka Wessely/White/Sharpe/Chalder School of Thought.

 

[Mithriel]

That's good.

It is by sharing information that we get to know what is going on, sort people out into the good and bad :Retro smile:

Does anyone know what MEsolutions has done? It surprised me that I had never come across them before.

Mithriel

 

[Cort]

The research project also proposes to select patients according to the
Canadian criteria and the Fukuda criteria - thus standardising on the same
criteria being used by the WPI in its research.

This sounds like an entirely new project which suggests Kerr did not pull out because he did not have samples - he pulled out because he didn't think he was going to find any XMRV based on his findings in his last study - which Invest noted. I don't what else to think.

 

[garcia]

This sounds like an entirely new project which suggests Kerr did not pull out because he did not have samples - he pulled out because he didn't think he was going to find any XMRV based on his findings in his last study - which Invest noted. I don't what else to think.

Well clearly he pulled out of the study because it was a follow-on study to initial work which failed to work. So he did the only thing he could do and gave back the money, until the issue is resolved. From my conversation with him, he is still open minded on the issue of XMRV in CFS, and was as keen as anyone else to know the answers.

Could the title of this thread be changed please? Its just that it is misleading at present. Kerr didn't pull out of all XMRV research. He pulled out of one study. The correct title should be "Kerr pulling out of XMRV study".

Many thanks,
garcia.

 

[Dx Revision Watch]

ME Solutions

http://www.mesolutions.org.uk/who-we-are/

http://www.mesolutions.org.uk/what-we-do/

http://www.mesolutions.org.uk/research-we-support/

Vivienne Parry (Sense About Science, Science Media Centre, Administrator GUS funding arm - GUS intitiated and funded the PRIME Project to the tune of 320K) is a Patron to ME Solutions.

(Yes, Parry who blames the ME community for the lack of CFS and ME research.)

Their Chief Scientific Advisor is Dr.Amolak Bansal who was Kerr's collaborator in this proposed study for which ME Solutions and Invest in ME had been engaged in fundraising.

When this proposed study was first announced, concerns were expressed about the clinic that Dr Bansal heads up and Invest in ME issued a statement. Concerns had also been expressed about the lack of information about how much funding was required, how much might already have been raised and from what source, and what would happen to donations if the full amount required could not be met.

I'll dig the Invest in ME statement out.

Suzy

 

[Dx Revision Watch]

Second Invest in ME notice:

(Extracted from Invest in ME Newsletter December 09, my highlighting)

A Chance to Help Biomedical Research into ME

Maybe a new chief executive or a new government will bring the change in
policies required. Maybe the XMRV research will make the MRC policies
redundant. But we could wait forever for the MRC to acknowledge the obvious
and for Professor Holgate to convince the MRC to fund biomedical research -
"proper science". Or we can do what we can ourselves.

Invest in ME have decided to work with another charity, ME Solutions, to
begin a fund-raising campaign for research to be performed by Dr Jonathan
Kerr and Dr Amolak Bansal of Epsom and St Helier hospital (see our press
release detailing the research - click
<http://www.investinme.org/IIME Biomedical Research 2009 12 01 K
err.htm> here).

Dr Kerr has been starved of funding from the UK Medical Research Council
(who have used the nonsensical excuse that there have been no high-quality
applications for biomedical research).

Dr Kerr has been working with Dr Mikovits from WPI and they have even been
awarded funding from USA's NIH. The fact that Dr Kerr has to look to the USA
for funding to perform research shames the UK government and the
establishment organisations such as the MRC.

Invest in ME wish to help Dr. Kerr's continued work and further the research
around XMRV and immune system dysfunction.

We knew there would be concerns around Dr Bansal's connection with the CNCC
clinic at the St Helier hospital. Some of the concern is understandable.
Invest in ME have also been critical of the government's CNCC clinics as not
being set up correctly to serve patients with myalgic encephalomyelitis. We
were also concerned that some of the information about ME on the Epsom and
St. Helier website was incorrect and we have suggested to Dr Bansal, via ME
Solutions, that it be removed or corrected.

However, the same department web site also states that - "The main research
interests of the department include NK cells and infertility, allergy,
immunodeficiency and the chronic fatigue syndrome." and "NK cell activation
and cytotoxicity are routinely performed within the department of Immunology
at St Helier Hospital."

So Invest in ME discussed this with Dr Kerr and ME Solutions. Dr Kerr's
respect for Dr Bansal's expertise in immunology convinced us to give our
support to this exciting new project. Dr Kerr has already collaborated with
Dr Bansal on ME/CFS research. It is worthwhile looking at the actual
research proposed. The important item is the research to be performed and in
this case we need to look to the future.

The title of the research project is "The role of XMRV in modulation of NK
cell cytotoxicity and NK cell gene abnormalities in ME/CFS patients"

The research is distinct in that it will relate the presence of XMRV in NK
cells with other CFS-associated abnormalities previously demonstrated in NK
cells. XMRV has been cultured from T, B and NK cells, but primarily targets
NK cells. NK cell dysfunction has previously been found to be abnormal in
ME/CFS, despite their numbers often being largely unaffected. Defects in the
innate immune system are thought to play a key role in the pathogenesis of
ME/CFS and these abnormalities may leave individuals susceptible to XMRV
infection. This study will relate the presence of XMRV in NK cells with
ME/CFS-associated abnormalities previously demonstrated in NK cells and
ME/CFS-associated gene abnormalities.

The research project also proposes to select patients according to the
Canadian criteria and the Fukuda criteria - thus standardising on the same
criteria being used by the WPI in its research. We believe this will help in
setting a baseline for future research. If one wishes to have research using
patient samples diagnosed according to the Canadian Criteria then one has to
start somewhere and we fully trust Dr Kerr in his commitment.

For this research project Invest in ME and ME Solutions will be able to make
joint grant applications - the reasoning being that two ME charities working
together to fund-raise will make it a more attractive proposition for
grant-giving bodies.

We would expect the majority of any funding for the project to come from
these grant applications but often a funding body wishes to see some funding
secured separately.

We welcome support and contributions from organisations who have funds for
biomedical research and who wish to contribute to XMRV research. We also
welcome support from individuals who are able and willing to support one of
the key ME researchers in the world today.

Invest in ME will be contributing to this project, as best we can, using our
Biomedical Research Fund. Our interests are in getting funding for
biomedical research into ME and for Dr Kerr to continue to perform ME
research and cooperation with Dr Mikovits and the extraordinary WPI team.

-------------

First Invest in ME notice

Funding Biomedical Research into ME

Two charities are joining forces to fund research into ME/CFS.

ME Solutions and Invest in ME are working together to maximise the opportunities to fund research into ME/CFS. The research project is -

The role of XMRV in modulation of NK cell cytotoxicity and NK cell gene abnormalities in ME/CFS patients and normal blood donors

The project will be carried out by Dr Jonathan Kerr and his team from St. George's University, London, and Dr Amolak Bansal of the Department of Immunology, Epsom & St Helier University Hospitals NHS Trust.

Background to the project

A newly discovered ?-retrovirus, Xenotropic Murine Leukaemia Virus - like virus (XMRV) has recently been found to be present in the blood of 68 of 101 (67%) ME/CFS patients as compared with 8 of 218 (3.7%) normal healthy controls (Lombardi et al, 2009). XMRV has been cultured from T, B and NK cells, but primarily targets NK cells. NK cell dysfunction has previously been found to be abnormal in ME/CFS, despite their numbers often being largely unaffected.

Defects in the innate immune system are thought to play a key role in the pathogenesis of ME/CFS and these abnormalities may leave individuals susceptible to XMRV infection. This study will relate the presence of XMRV in NK cells with ME/CFS-associated abnormalities previously demonstrated in NK cells and ME/CFS-associated gene abnormalities.

Plan of Investigation

A sample of clinically-diagnosed (according to the Fukuda and Canadian criteria) ME/CFS patients and age-and-sex matched normal controls will be recruited. XMRV status will be determined and NK cells obtained and tested for ME/CFS-associated gene abnormalities in NK cells. XMRV status will be related to ME/CFS gene expression changes.

Donations

ME Solutions and Invest in ME welcome sponsorship and donations for this two year project which we hope will begin as soon as possible.

The links below will allow online donations to be made.

https://charities.everyclick.com/purchase?d=D&cn=Invest-in-ME&cid=275467&ctId=1114035&cy=GBP

http://www.justgiving.com/mesolutions/donate

 

[Dx Revision Watch]

Those job ads were 5 years ago and he might not have been involved in the wording. Apart from that, I don't recall seeing other indications that he is of the CBT School of Thought aka Wessely/White/Sharpe/Chalder School of Thought.

But he headed up the clinic, then.

Dr Ellen Goudsmit has been writing favourably about Dr Bansal on the ME Association's Facebook Wall, hasn't she Tom?

 

[Dx Revision Watch]

I would post the comments of Dr Ellen Goudsmit (now psychology advisor to the ME Association) in connection with her own experience as a patient of Dr Bansal, but Ms Goudsmit expressly does not give permission for what she writes on the MEA's Facebook Wall and Discussion pages to be published elsewhere - so I'm afraid I cannot republish.

ME Association Facebook Wall:

http://www.facebook.com/group.php?v...tory_fbid=226500923256&gid=68630803256&ref=mf

 

[Dolphin]

But he headed up the clinic, then.

Dr Ellen Goudsmit has been writing favourably about Dr Bansal on the ME Association's Facebook Wall, hasn't she Tom?

I heard her mention a good experience before on another list. If people have seen me interact with Ellen over the last 10 years or so, it does not work that because she says things, I agree with them. I challenged her probably more than anyone else (except maybe CB for a period - but they were for different reasons!) on IMEGA-e. I have learned a lot from her knowledge of the literature but have also disagreed with her plenty of times.

But as I said, I was pleased with the report I saw on the meeting he gave on the IACFS/ME conference that appeared in a local group newsletter. And have seen the odd other thing that seemed reasonable although haven't seen much. If there are "bad" things he wrote himself, I will be interested to see them.

I know that just because you are an immunologist or infectious disease doctor, doesn't mean you can't be trouble e.g. Nye.

We don't have lots of immunologists queuing up in the UK to research the illness (certainly not before the XMRV finding). That study looked potentially interesting. Immune problems are something the CBT School rarely talk about - they can talk about some endocrine problems as due to stress, Orthostatic Intolerance as due to deconditioning, Neurological abnormalities are sometime connected with the brain/thinking and psychiatric problems (and sometimes merge them together). It is not easy to explain away proper immunological abnormalities. And immune drugs are also drugs one doesn't associate with the CBT School.