Agenda: MRC CFS/ME Research Workshop 19-20 November 2009

Agenda: MRC CFS/ME Research Workshop 19-20 November 2009

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I have received the following response, today, from Ms Rosa Parker, Corporate Governance and Policy, Medical Research Council under the FOI Act:

 Workshop AGENDA in PDF format:  Agenda MRC CFS/ME Workshop 19 – 20 November

I had asked for:

1] A copy of the Agenda for this event.

2] A list of partipants for this event

3] Clarification of whether the CFS/ME Expert Group intends to continue to hold meetings beyond the Conference / Workshop in November.

Ms Parker’s response:

“The agenda has now been finalised and circulated, a copy is attached. We are still in discussion with colleagues regarding the participants list and will respond to this part of your request in due course. You also asked whether the Expert Group intends to hold any further meetings following the Workshop; I can confirm that the Expert Group does intend to hold a meeting following the workshop. The dates of this meeting have yet to be confirmed, the note of this third meeting will be published on our website in due course.

“You have now also asked a couple of additional questions. You have asked whether a note or report of the workshop will be available. I can confirm that a note of the workshop will be published on our website, but I am not able to confirm the timescale at this stage. You have also asked about the minutes of the second meeting of the Expert Group. The minutes are currently being finalised and as soon as they have been approved they will be made available on our website, at the moment we expect this to be within the next month.”

“I hope that this information is helpful, and I will be in touch regarding the participants list in due course.”

Rosa Parker
Corporate Governance and Policy, Medical Research Council

11 November 2009

Link back

MRC Two day Research Workshop 19 and 20 November 2009

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The Agenda and Minutes of the meeting on 15 December can be downloaded here or opened in PDF format here:

PDF: Minutes CFS/ME Expert Group Meeting 15 December 2008

Document Library
CFS/ME Expert Group meeting – 15 December 2008
Issued: 15 Dec 2008
Primary audience: Researchers
Document Summary

The list of members can be opened in PDF format here:

PDF: CFS/ME Expert group membership

Term of Reference can be opened in PDF format here:

PDF: Finalised Terms of Reference for CFS/ME expert group

or go to MRC site for full article and files:

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis 

( http://www.mrc.ac.uk/Ourresearch/ResearchFocus/CFSME/index.htm )

Top scientists to meet at Cleveland Clinic on trail of XMRV

75 top scientists are flying in to convene on Wednesday at the Cleveland Clinic.

Top scientists to meet at Cleveland Clinic on trail of XMRV, a suspect in prostate cancer

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http://www.cleveland.com/healthfit/index.ssf/2009/11/top_scientists_to_meet_at_clev.html

By Angela Townsend, The Plain Dealer
November 10, 2009, 6:00AM

Dr. Robert Silverman is a cancer biologist at the Cleveland Clinic instrumental in the discovery of the XMRV virus. Medical reporter Angela Townsend discusses this story at 7:35 this morning with WCPN FM/90.3’s Eric Wellman on Tuesday Check-up. Listen in or log in online. The virus XMRV has become a favorite topic in the scientific community — three years after its initial discovery in prostate cancer tumors by researchers from the Cleveland Clinic and the University of California, San Francisco…

[...]

Capitalizing on the excitement and heightened spirit of collaboration, 75 of the top scientists nationwide studying XMRV are flying in to convene Wednesday at the Clinic.

“This is the first meeting of the major players in the area of XMRV,” said John Coffin of the department of microbiology at Tufts University in Boston. “I think there’s going to be a lot of excitement and a lot of new information presented.”

Contact Angela Townsend: atownsen@plaind.com  or 216-999-3894.

Read full article here

 

Link back

For initial Whittemore Peterson Press Release and NIH (National Institutes of Health) News Release go here: http://wp.me/p5foE-272

For Science paper go here: http://wp.me/p5foE-2is

Go here for all previous XMRV Round ups and postings in reverse date order: http://meagenda.wordpress.com/category/xmrv/

Benefits and Work: You’re not so easy to silence

An update from Benefits and Work’s Steve Donnison

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Steve Donnison  |  10 November 2009

www.benefitsandwork.co.uk

You’re not so easy to silence

With just a few days of consultation left now, Andy Burnham’s attempt to ‘close down…the debate and controversy over disability living allowance’ seems to have been only a partial success.

As we explained in our last newsletter, Burnham gave an assurance that DLA for people aged under 65 was not going to form part of the funding for the National Care Service. Like many others, we pointed out that this means that DLA for people aged 65 and over, as well as AA, is still under threat. We urged people not to let this cunningly worded concession succeed in silencing them.

And you certainly didn’t.

People have continued to sign the No 10 petition, which is now at number 6 on the Downing Street site with over 20,000 signatures.

http://petitions.number10.gov.uk/AttendanceA/

And posts have continued to pour into the Big Care debate website which now has almost 3,400 submissions.

http://careandsupport.direct.gov.uk/greenpaper/execsum/

Many recent posts make it clear that you are aware that assurances have been give about DLA for people aged under 65, but you’re still not happy.

In addition, following our revelations in a members only article on the site at the end of last month, many recent posts have been about the fact that the government proposes to send everyone a one-off £20,000 tax bill on their 65th birthday to help cover the cost of the proposed National Care Service.

More secrecy around National Care Service
http://www.benefitsandwork.co.uk/news/latest-news/1123-more-secrecy-around-national-care-service

The tax will be means-tested, so not everyone will have to pay the full amount. But it can be recovered from your estate after you die, if you own a home or other property. And the tax also won’t cover the cost of food and accommodation if you have to go into residential care, only the care itself.

So, you still facing losing your disability benefits at age 65, you’ll still get handed a £20,000 tax bill and yet, if you do have to go into residential care for two years, the green paper estimates that you will still have to pay half of the estimated £50,000 cost from your own pocket.

MPs were also not fooled into silence by Burnham’s DLA announcement. In a debate on the proposals at the end of last month, Burnham was repeatedly questioned about whether DLA for people aged 65 and over would be used to fund the National Care Service. He repeatedly dodged answering the question.

Burnham refuses to answer DLA questions
http://www.benefitsandwork.co.uk/news/latest-news/1122-burnham-refuses-to-answer-dla-questions

Suspicions about the government’s plans have been further fuelled by its refusal to publish promised details of how the new service will be funded.

More secrecy around National Care Service
http://www.benefitsandwork.co.uk/news/latest-news/1123-more-secrecy-around-national-care-service

A coalition of charities – the Care and Support Alliance – is now set to make a Freedom of Information request to try to obtain the information.

Unfortunately, there is at least one organisation which continues to claim that DLA is now safe. . . Disability Alliance. Until the end of last week their home page still proclaimed ‘DLA no longer part of social care plans. See our press release.’

The link has now been removed from their home page, but the press release stating that “…the Disability Living Allowance (DLA) benefit will not be affected by Government plans to merge some benefits with social care funding” remains. So, Burnham may have succeeded in closing down the debate in one place at least.

For the rest of us, we still have until Friday to make our contribution to the Big Care debate and to sign the petition.

We’ll be back next Tuesday with our final email of this campaign and information about how you can stay in touch with what happens next.

Good luck,

Steve Donnison

Please feel free to forward or publish this article.

Benefits and Work Publishing Ltd
www.benefitsandwork.co.uk
Company registration No. 5962666

POST YOUR NEWS
Finally, remember that you can post your news in the Benefits and Work forum, if you’re a member, at:

http://www.benefitsandwork.co.uk/forum?func=showcat&catid=13

and/or in the free welfare watch forums at:

http://welfarewatch.myfineforum.org/index.php

You can also keep up with news about opposition to the green paper at the Carer Watch campaign blog:

http://carerwatch.com/cuts/

Unfortunately, we’re getting so many emails on this subject that we are unlikely to be able to respond individually. But we do appreciate hearing your news and views and we do encourage you to publish them for others to read on the forums detailed above.

Times: Reference to ME patient and threat of legal action, 10 November 2009

Private Eye: Critics of the Lightning Process, report on Legal News Page

Times: Reference to ME patient and threat of legal action, 10 November 2009

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Private Eye’s Legal News page reported a couple of weeks ago that critics of Phil Parker’s Lightning Process had received letters threatening legal action. Private Eye provides no source(s) for this claim and to the best of my knowledge no-one has come forward yet with documentary evidence confirming this report.

(Report courtesy ME Association)

http://www.meassociation.org.uk/content/view/1063/161/

M.E. and the Lightning Process in ‘Private Eye’

There’s a small item in the latest issue of ‘Private Eye’ about M.E. and the Lightning Process. It’s on page 10 in the ‘Legal News’ section.

It reads:

“M.E. sufferers were stunned recently to receive threatening letters when they posted their views on the ‘Lightning Process’, a programme that allegedly produces ‘amazing results’ for people not only with M.E. but ‘anxiety, panic attack, over-eating, low self-esteem and guilt’ too. When sufferers started reporting they had paid £600 for a course that did not work for them, they received warning of defamation proceedings if they did not recant.”

If anybody has received a letter like that, we would be interested in seeing a copy.

Today, the Times has published a piece by John Kampfner, Chief executive of Index on Censorship and author of Freedom for Sale.

Mr Kampfner writes, “One man who runs a patients’ website was threatened with legal action by a drugs company after posting a comment that a treatment he had tried for ME had not worked. He had to take down his observation.”

Readers who are ME patients or carers of ME patients and have received threats of legal action from any source following complaints about therapies, training programmes, treatments or pharmaceuticals are invited to contact ME agenda, in confidence.

——————–

Times  |  10 November 2009

Times Link: http://www.timesonline.co.uk/tol/comment/columnists/guest_contributors/article6910168.ece

The laws that stain Britain’s good name
Libel tourism isn’t just a matter for the media elite. Freedom of speech for everyone is in danger
by John Kampfner

——————–

Read full article here on Times site

Link: http://www.timesonline.co.uk/tol/comment/columnists/guest_contributors/article6910168.ece

Full article can also be read here on Index on Censorship

Link: http://www.indexoncensorship.org/2009/11/libel-reform-the-laws-that-stain-britains-good-name/ 

The report can be downloaded at: http://www.libelreform.org/our-report

“The Libel Reform coalition brings together English PEN Index on Censorship and our partner organisation Sense About Science to campaign to reform the libel laws of England and Wales.”

Supporters of Libel Reform include:

Ian Hislop, Editor Private Eye
Alan Rusbridger, Editor, The Guardian
Peter Wright, Editor, Mail on Sunday
Ben Goldacre, Columnist, The Guardian, “Bad Science” Blog

Medically Unexplained Psychologising of ME (MUPs) by Peter Kemp

An essay by Peter Kemp orginally published on Co-Cure

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Medically Unexplained Psychologising of ME (MUPs)

Permission to repost

10 October 2009

In this essay I will explore some psychic phenomena that might be relevant to psychologising of illness.

Generalisations cannot practically be made, MUPs is not just heterogeneous from a psychic viewpoint – it is likely to be individual. So I can only explore my impressions and I hope you will read my theories as falling somewhere between the Origin of Speciousness and A Tale of Two Settees.

Use of some terminology has been unavoidable but I include a few definitions and illustrations as ‘Asides’ that I hope will help make the essay accessible to PWME.

Peter Kemp

Acronyms:

PWME = Person (or People) With ME

MUPs = Medically Unexplained Psychologising of ME

 

Medically Unexplained Psychologising of ME (MUPs)

Aside 1

AN ILLUSTRATION OF ‘PROJECTION’

Jack thinks that it would be very bad to be envious; this might be something his parents taught him. He notices envy in other people and condemns them for being envious. The envy that he so often notices might be real or not, it does not matter because it is HIS envy he is seeing. He is Projecting his envy onto other people to try and hide and control it within himself.

WITHDRAWAL OF PROJECTION

Projection is an unconscious process, people are not aware when they are doing it, but if they can become aware of the true source of a problem there may be an opportunity for growth.

One day Jack says to Jill, ‘I think you are envious of Mary’s little lamb’; and Jill says, ‘actually, I love Mary so much I gave her that lamb. I think you are envious because I get on so well with Mary.’ Jack’s theories fall apart and his projection is laid bare. If he is honest and humble enough he can then discover his own envy and stop projecting it. It may help if Jill points out ‘what’s wrong with being envious anyhow? It is part of how I know what I like and what I want’.

Through this uncomfortable experience Jack stops projecting envy and finds that natural feelings of envy can help him to make decisions about what he wants in life.

———————————————

Projected Fear

PWME represent ‘ideal’ subjects for the projection of all sorts of fears, Fear of losing control, Fear of weakness, Fear of illness, Fear of physical inadequacy, and perhaps worst of all, Fear of fear. For some MUPs I suspect that subtler projections and issues arise, such as Fear of being wrong and Fear of being misunderstood. All these fears have their roots in the psyche and are most troublesome when their origins are unconscious and when strongly denied. This may result in odd behaviour that may nevertheless be easily justified, but the justifications do not reveal the true motives behind the behaviour, instead they contribute to their concealment.

To confront fear it must be acknowledged but if it originates from an intense inner conflict it might be that the ego is not ready to withstand it. In these circumstances an internal struggle is maintained to repress some aspects of a complex in order to protect the ego. Enacting these conflicts in the world is a common way of reinforcing defences and avoids addressing the conflict directly. Unfortunately, this never resolves the issue at its source and means that substitute conflicts must constantly be found. As such projecting Fear may be predisposing and initiating; and because projection is an avoidance strategy, it is likely to be a maintaining factor in MUPs.

Withdrawal of Projection

For some people in whom contact with PWME arouses issues with fear, the psyche may seize this as an opportunity for growth. If someone projects fear onto another they may sometimes be able to compare their projection with the actual person. If discrepancies are found then the projection might start to weaken, then the projector has an opportunity to challenge and eventually withdraw the projection.

For example; a person fearful of losing control might project this onto a PWME; if they then realize that the PWME is actually coping well (with what for many people is a terrifying aspect of disability), the projector may think something like; ‘I thought he was weak, but I could not cope so well with such a loss of control’. This represents a stage of withdrawal of a projection as the projector has discovered that the source of the fear is within himself. Such situations might be considered MUPs based on transient / opportunistic factors; and is I suspect, a very common occurrence. Some MUPs might be able to relate to this if they find they vacillate between impatience and respect towards a PWME. This could be a sign that projections are weakening and the source of fear might be discoverable.

XMRV Retrovirus presentations: Klimas, de Meirleir, Hyde

XMRV Retrovirus presentations: Klimas, de Meirleir, Hyde

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Dr Nancy Klimas lecture, Florida, 7 November 2009

A video of Dr Nancy Klimas’s 7 November lecture is expected soon on Dan Moricoli’s CFS-ME Network, here:

http://cfsknowledgecenter.ning.com/

An earlier video, “Dr Nancy Klimas discusses the XMRV virus discovery, what it means, what’s next and what you can do”, recorded 12 October, can be viewed in the Video Section here:

http://cfsknowledgecenter.ning.com/video/klimas-on-xmrv

————–

Göteborg Conference, Sweden

Dr Byron Hyde: Missed Diagnoses
Dr Kenny de Meirleir: End of an Era of Medical Negation

Göteborg 10th November: Professional’s Day
Göteborg 11th November: Public meeting http://www.rme.nu/node/85

Malmö 12th November: Public Meeting http://www.skane.se/templates/Page.aspx?id=266536

According to Whittemore-Peterson Institute on Facebook, the Byron Hyde and Kenny de Meirleir lectures in Göteborg on Professionals Day, 10 November will be videotaped and placed on the internet.  A DVD will also be available for purchase at Riksföreningen ME Göteborg (email: goteborg@rme.nu).

http://www.rme.nu/lokala-foreningar/rme-goteborg

A PDF of Dr Hyde’s conference address is available here:

http://www.nightingale.ca/documents/GoteborgConference.pdf 

(Pages 7 and 8 for section: “The Whittemore Peterson Institute CFS – Retrovirus Announcement” )

Göteborg and Malmo, Sweden
M.E. Conferences: November 2009

Link back

For initial Whittemore Peterson Press Release and NIH (National Institutes of Health) News Release go here: http://wp.me/p5foE-272

For Science paper go here: http://wp.me/p5foE-2is

Go here for all previous XMRV Round ups and postings in reverse date order: http://meagenda.wordpress.com/category/xmrv/

ME in Parliament: Written answers 5 November 2009

ME in Parliament: Written answers 5 November 2009

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The ME Association reports:

http://www.meassociation.org.uk/content/view/1069/70/

Questions in Parliament: notifiable illness in schools and funding for biomedical research

Parliamentary questions about making ME/CFS a notifiable illness in schools and the level of Government funding for biomedical research into illness in the 2008-9 financial year were answered in the form of written replies yesterday (5 November 2009).

NOTIFIABLE ILLNESS IN SCHOOLS

Paul Rowen (Lib Dem, Rochdale) asked the Secretary of State for Health whether his department had any plans to make ME a notifiable illness in schools and what recent discussions his department has had with officials from ME charities and campaign groups to make ME a notifiable illness in schools.

In a written answer, Anne Keen, Parliamentary Under Secretary of State for Health, replied:

“We have no plans to make chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) a notifiable illness in schools.

“Since 2007, the Department has received a large number of requests from many organisations, including CFS/ME stakeholders, campaigning for their disease or condition to be recognised as a notifiable disease. The Department’s position remains that this classification should be used only for a relatively small number of infectious diseases where monitoring is required to identify sources of infection, and not as a means for collecting statistical information on the prevalence of specific conditions.”

—————–

FUNDS FOR BIOMEDICAL RESEARCH

In a second written question, Mr Rowen asked the Health Secretary what funds his Department allocated for biomedical research on the causes and treatment of ME in the 2008-09 financial year.

Gillian Merron, Minister of State for Public Health replied:

“The Medical Research Council (MRC) is one of the main agencies through which the Government support medical and clinical research. The MRC is an independent body which receives its grant in aid from the Department for Business, Innovation and Skills.

“The MRC’s total expenditure on chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) research amounted to £730,000 in 2008-09.

“Over the 10 years to 2008-09, a large part of the Department’s total expenditure on health research was devolved to and managed by national health service organisations. Details of individual NHS supported research projects undertaken during that time, including a number concerned with CFS/ME, are available on the archived national research register.

https://portal.nihr.ac.uk/Pages/NRRArchiveSearch.aspx

—————–

The weblink given out in Parliament does not appear to be working this afternoon, but the £730,000 relates to the award of a National Institute of Health Research Clinician Scientist Fellowship to Dr Esther Crawley, Senior Clinical Lecturer at the Centre for Child and Adolescent Health at the University of Bristol.

Click here to read the Bristol University press release, dated 27 February 2009.

http://www.bristol.ac.uk/news/2009/6217.html

Correspondence between Stephen Ralph and Dr Charles Shepherd

Correspondence between Stephen Ralph and Dr Charles Shepherd

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The opinion piece below, which includes extracts from recent correspondence with Dr Charles Shepherd is authored and published by Stephen Ralph; the views and opinions expressed are the views and opinions of Mr Ralph and any comments or queries resulting out of this opinion piece should be addressed to Mr Ralph and not to ME agenda.

Stephen Ralph maintains a website at  www.meactionuk.org.uk 

Dr Charles Shepherd is an Honorary Medical Advisor and a Trustee/Director of the ME Association http://www.meassociation.org.uk/

A copy of the statement which Stephen Ralph quotes from is here:

 XMRV and ME/CFS: WHAT DO WE KNOW SO FAR? AND WHAT DON’T WE KNOW? (VERSION 3) (04.11.09)  http://wp.me/p5foE-2kq

—————–

By Stephen Ralph  ME Action UK

Permission to Repost

06 November 2009

Like many of you, I was alarmed when I read the recent MEA XMRV Statement No.3 particularly because of one telling sentence.

I decided to ask Dr Shepherd a series of questions and although I had several answers, I had no answer at all to one important question that I asked several times.

I asked Dr Shepherd about this statement.

“Demonstrating a link between a retrovirus and ME/CFS does not, by itself, resolve the physical vs psychological debate.

Research studies have demonstrated links between retroviruses and diseases as diverse as autoimmune disorders (which could be relevant to ME/CFS), immunodeficiency diseases, multiple sclerosis, tumours, anaemias and even schizophrenia.”

In reply I got the following from Dr Shepherd.

“I don’t think this comment will have any effect whatsoever on psychiatry.

Psychiatrists already know that viruses and psychiatric illness can sometimes be linked.

I put this info into version 3 because some people are wrongly assuming that having a viral link in an illness means that it must be physical rather than psychological. And that the physical vs psychological battle in ME/CFS is now almost over. I only wish…..

Retroviruses may be involved in schizophrenia and it is being said the up to 40% of people with autism have XMRV.”

I then asked Dr Shepherd what he would do if he found he was XMRV negative and how this might impact on his judgment.

In reply I had the following from Dr Shepherd…

“I don’t know my XMRV status. I obviously could have access to XMRV testing facilities. But as knowing my XMRV result isn’t going to affect either my diagnosis of ME or the management of my illness at this stage I don’t see any point in being tested.”

Lastly, I asked Dr Shepherd if he did or did not support the views of Professors Simon Wessely, Michael Sharpe and Peter White.

I asked this question twice for the sake of clarification.

Dr Shepherd has decided not to answer that question.

I asked the question because on numerous occasions the MEA have released hedge betting, sitting-on-the-fence statements or cheek turning Statements that effectively support the agenda of Somatoform Psychiatry or completely ignore the agenda of Somatoform Psychiatry.

The statement regarding XMRV not ending the debate on mental v physical is for my eyes indicating that yet again the MEA and Dr Shepherd are entertaining the possibility that Wessely White and Sharpe are right.

Dr Shepherd – you should be actively ending the involvement of Professors Wessely, White and Sharpe and you should be representing the total “State of Science” from across the Atlantic as is the case with the ESME – see their website for example…

http://esme-eu.com/news/category7.html

…instead of selectively picking what you want to feed your members and back peddling on the profound implications of XMRV and what was said at the CFSAC last week.

As we all know, the liaison faction of psychiatry firmly and militantly assert that CFS is a functional psychosomatic syndrome and that ME does not exist at all.

We know that the likes of Wessely, White and Sharpe are trying to get CFS into the next edition of the DSM – DSM-V and reclassified in ICD-11.

Both Action for ME and the ME Association are doing nothing to stop this agenda.

I asked Dr Shepherd some time ago if he or the MEA were going to do anything about the CSSID DSM-V ICD-11 agenda and Dr Shepherd said he was too busy and it wasn’t on his list of things to do.

In my view, the ME Association is not a lot more than the Public Relations arm of Action for ME.

Yes they seem approachable and yes they seem to press all the buttons that please some of their members.

But as soon as you ask anything considered “controversial” or important – then Dr Shepherd and/or the MEA goes silent and refuses to answer the question as is the case by default with Action for ME.

It seems to me that here in the UK and for many years, the ME population are being held hostage by the mental health movement who seem to have castrated both Action for ME and the ME Association who between them dominate the arena yet lay silent and do nothing to counter the mental health agenda…

So it seems to me that neither charity actually give a damn about the concerns of the ME community unless those views accord with their agenda that they will not discuss when challenged in ANY detail.

They say the devil is in the detail but we do not know what the detail is because when we ask we get nothing back.

Under these circumstances we need those over in the USA and those in the UK with Independence of mind and purposes such as ME Research UK, the 25% ME Group and Invest in ME – to come to the rescue of the UK ME patient population.

If people are not happy with this e-mail I have written and you think I am being unfair then you should ask Dr Shepherd and the MEA yourselves and get the answers he would not give to me or the many others who have asked similar questions over the years that never get answered.

Why does the MEA turn the other cheek and choose not to robustly challenge the views of Professor Wessely and his colleagues and instead state that “they already know” so that these individuals are therefore beyond challenging…

How exactly does liaison psychiatry “already know” that retro-viruses cause mental illness and does the MEA believe that XMRV potentially causes functional mental illness in people with ME? If not then why stay silent – creating a space for the opposition to occupy.

Why does the MEA put out neutered statements that reflect the views of liaison psychiatry instead of using all the evidence available to robustly and technically challenge those views?

Why is the ME Association calling for the use of the CDC Fukuda Criteria in UK XMRV research when the Fukuda criteria has been and is still being exploited by Wessely et al due to its well known ability to produce a heterogeneous patient group and therefore research results that are by default inconclusive and “mixed” and challengeable by those with a mental health agenda?

Why does the ME Association not firmly call for the use the Canadian criteria or use both Fukuda and the Canadian criteria in parallel research to make the research outcomes more meaningful and less open to exploitative deconstruction when the ME Association at one time adopted the Canadian Criteria by a democratic vote and then quietly swept that democratic vote under their carpet?

This is all about accountability. We should be given full answers to all of the above questions.

What is wrong in asking?  Why does that make us bad?

Yours sincerely,

Stephen Ralph

www.meactionuk.org.uk

Dr Byon Hyde, MD: Reference to XMRV retrovirus in Goteborg Conference address

Update: I have approached Simon Lawrence, Chair of the 25% ME Group Management Committee for a position statement on the XMRV study findings.

WordPress Shortlink: http://wp.me/p5foE-2kr

Earlier today, the 25% ME Group announced that Dr Byon Hyde, MD, has taken up the role of Patron and Medical Advisor to this organisation for the severely affected – see previous posting:

25% ME Group announces Byon Hyde MD as new Patron and Medical Advisor: http://wp.me/p5foE-2kj

The 25% ME Group has yet to issue a response to the news of the XMRV study published in Science on 8 October.

What is Dr Hyde’s position on XMRV?

Extract from Dr Byron Hyde’s address to Swedish M.E. Conference, November 2009

Open address here in PDF format: Hyde Goteborg Conference

http://www.nightingale.ca/documents/GoteborgConference.pdf

Göteborg and Malmo, Sweden

M.E. Conferences: November 2009

I am truly honoured to be invited to speak to you today. May I begin by thanking my gracious Swedish hosts, particularly Birgitta Björlevik and her committee in Göteborg and Lisa Forstenius and her committee in Malmo. I fully realize that these meetings take an enormous amount of work and expense both in time, hard work and funds I would like to discuss the following topics

1. What is M.E. (Myalgic Encephalomyelitis)?
2. The Investigation Roadmap to Understanding any Disease Process, Including M.E. and Fibromyalgia.
3. The Recent Discovery of the Retrovirus Association with M.E.
4. What you might discover when you investigate M.E. patients.
5. What you might discover when you investigate the underlying pathology of Fibromyalgia Patients.

[...]

Page 7

3: The Whittemore Peterson Institute CFS – Retrovirus

Announcement

The Cause of CFS is a Retrovirus: In 2009, Dr Peterson, is probably one of the nicest and learned colleagues in the field of CFS, recently from the brand new, just opened, multi-million dollar Whittemore Peterson Institute in Reno Nevada, announced overwhelming evidence that the cause of M.E. or CFS, is XMRV retrovirus. The XMRV mouse retrovirus occurred in 68% of the CFS patient’s blood samples and only 4% of non-CFS patients. Pretty convincing!

This retrovirus theory comes with a history: It was first raised as a possibility by the gay community at a symposium I attended in San Francisco in 1987 and again by Florida based researcher Dr DeFreitas in the early 1990s. Dr DeFreitas discussed this retrovirus theory in our textbook, The Clinical and Scientific Basis of M.E. /CFS.

At the very least, this retrovirus discovery is great free advertising for the Whittemore Peterson Institute. It will possibly bring them in many millions of dollars from, patients willing to be separated from their assets, generous charities and governments before the retrovirus theory is once again thrown into the garbage bin. I should add that incubation period of XMRV is up to 21 days which makes it impossible to cause an epidemic illness. One theory to explain this “new” finding is that XMRV is a mouse virus and since many research institutes have tens of thousands of mice, cross contamination of specimens are inevitable.

The Cause of CFS is Human Herpes Viruses 6 & 7: In June 2008 I was paid by the Swiss pharmaceutical company, ROCHE to attend a symposium on CFS in Baltimore, Maryland. There were well over 100 “eminent” speakers from around the world, all the speakers except for a salaried researcher from the Canadian Government Viral Detection Laboratory in Winnipeg stated they found Human Herpes 6 & 7 in the 70-80% of all CFS patients but not in healthy controls. Now I am under the opinion that the technology for demonstrating HHV 6 & 7 may be under copyright to a USA laboratory. It is also possible they give cash or free travel grants to University researchers who can prove the HHV CFS association but not to those who do not find this association. It is my belief that the US laboratory which sponsored this Symposium has the copyright of this test.

Whether money is changed hands or not, if I am correct, such a symposium with over 100 research papers could ultimately bring in several million dollars or more a year of royalties to this laboratory. Also, Roche Pharmaceuticals who paid my way along with 10

8

of the other researchers, one from the Whittemore Peterson Institute, were offering a carrot of 30 million dollars in research grants to the ten researchers and myself who would treat CFS patients with their new Herpes Virus anti-viral. Dr Peterson, the Whittemore- Peterson researcher was one of the ten at this private meeting with me. He too stated that he found conclusive evidence that the cause of CFS was HHV 6 & 7. I was the only invitee who told the Roche representatives that they were wasting their money. If ROCHE had funded the Whittemore Peterson it might have been financial suicide, to then state that the XMRV retrovirus was the cause of CFS.

The Cause of CFS is an Enterovirus: In 2007, the son of California Infectious Disease specialist, Dr John Chia fell ill with M.E. He also complained of stomach pain. Dr Chia examined his son’s stomach and saw an infection that when biopsied, turned out to be a Coxsackie enterovirus. This is a virus in the same family as poliovirus. This is the same virus family associated with the Akureyri Iceland epidemics in 1947. It is the same group of viruses associated with the M.E. pandemic in Canada in 1984-1986. There is no money to be made with this virus since there is no patent on it and it is difficult to recover. In four of the sixty M.E. Epidemics an enterovirus was recovered. In over 50 other epidemics, no virus was recovered but the average incubation period of the infection in these epidemics was 3-6 days, as it is in all enterovirus infections. HHV6 has an incubation period of 10-12 days. The EBV incubation period is 40 days.

So in three consecutive years, 2007, 2008 and 2009 three absolutely certain causes of CFS were announced.

3a: What are my opinions of the cause of M.E.?

A: In epidemics or Clusters: any virus that attacks the brain that has a short incubation period of 2-6 days can provoke epidemics of acute onset disease. This excludes HHV6 & 7, EBV, and HMRV with 10 to 40 day incubation periods. Among common viral infections, enteroviruses & influenza viruses with a 2-6 day incubation period can fit this epidemic possibility or any milder encephalitic viruses. In both Epidemic and Sporadic Illness the overwhelming majority are patients are in the health care and teaching professions, both in daily contact with infectious disease.

B: Sporadic (individual) acute onset cases of M.E.: any infectious, traumatic, or immunization agent causing diffuse low grade diffuse brain injury or encephalopathy can cause M.E. This can be due to epidemic viruses such as enteroviruses and influenza viruses or non-epidemic viruses such as Epstein Barr Virus in Adults:

1. The enteroviruses infections Coxsackie, ECHO and numbered enteroviruses but also Varicella (chicken pox) in adults and EBV in adults. I have never had a case of chronic EBV last longer than 3 years. (!)

2. Any number of infectious agents capable of causing an encephalopathy. (Viruses infecting children and youths tend to have a less injurious action on the brain than the same viral infection affecting adults over 25.)

3. Certain immunizations given to some adults, but particularly Recombinant
Hepatitis B (RHHB) and Influenza immunizations can cause M.E., even when not contaminated as in the Chiron influenza immunization. This causal link may be due to the fact they are two of the few immunizations that adults receive frequently. Chronic illness such as M.E. can occur if the patient is travelling or in contact with minor infectious agents in the 3-week period following any immunization. The trick is never to receive any immunization immediately prior to travel, particularly to a third world country.

Full document here: http://www.nightingale.ca/documents/GoteborgConference.pdf

or open here:  Hyde Goteborg Conference

25% ME Group announces Byon Hyde MD as new Patron and Medical Advisor

The 25% ME Group has announced, today, that US Dr Byon Hyde, MD, is taking up the role of new Patron and Medical Advisor to this organisation for the severely affected.  The Countess of Mar had been a long time Patron to the 25% ME Group but was asked to stand down early this year following the NICE Guideline debacle.

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25% ME Group  http://www.25megroup.org

PERMISSION TO REPOST

The 25% ME Group is pleased to report the appointment of their new Patron and Medical Advisor.

We are absolutely delighted to announce that Dr Byron Hyde will be taking up the role with immediate effect.

Dr Byron Hyde is leading physician and researcher specialising in Myalgic Encephalomyelitis (ME) and has worked exclusively with ME patients since 1985.

He is the founder and chairman of the Nightingale Research Foundation which is dedicated to explore, understand and treat patients disabled with ME and is at the forefront of the struggle to draw a clear distinction between ME and the current definitions of Chronic Fatigue Syndrome. In 1992 he published the medical reference book still used by researchers internationally “The Clinical and Scientific Basis of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome”.

Dr Byron Hyde is an outspoken critic of the role psychiatry has played in ME. His entreaty that “Psychiatrists should not ever be placed in charge of diagnosis and treatment of M.E. patients” is one we fully support.

Dr Byron Hyde has been instrumental in bringing about recognition of ME as a serious illness and we feel he fully represents the interests and aims of the 25% ME Group. We are proud to have him as our Patron.

We also take great pleasure in announcing our new additional Medical Advisor, Dr Nigel Speight, who, as you will read below, recently departed from AYME. We are extremely pleased to have Dr Speight on board as he is a highly respected medical professional within the ME field and a great advocate for the biomedical view of ME.

Below we have posted resignation letter from Dr Nigel Speight to AYME (Young Childrens’ ME Charity) for your information.

Dear all

I just thought I should inform you officially that after a long and happy association with AYME I have decided to resign as their Patron. Without going into too much detail I would say that over the last couple of years I have become aware that they have changed their position on several areas and that our views have accordingly diverged.

In particular AYME seem to have become more willing to collaborate with the medical and psychiatric establishment in order to appear respectable. This appears to have been the cause of AYME’s relative enthusiasm for the NICE Guidelines, which most of us feel involve an overemphasis on CBT and GET. This compromise seems to have helped the psychiatrists to get a new lease of life.

The result of all this is that AYME appear to have alienated themselves from most of the other ME charities (with the exception of AfME who appear to be taking a similar position). In this controversy I feel more in sympathy with the rest of you.

I have gained the impression that AYME no longer appreciate my opinions and prefer my status as their figurehead to be a largely silent one.

It is a combination of all these factors that has caused me to resign and I am sure you will all understand.

With Best Wishes

Nigel Speight

We are especially delighted to announce the new Patron and Medical Advisor for our Group because as many of you will know, both stand for the true recognition and research of ME (as opposed to including it along with other Chronic Fatigue conditions). They also are firmly opposed to any psychological intervention within the area of ME.

We hope you will be delighted along with us regarding this news and please feel free to report or republish this information within your own publications etc.

With best wishes

Simon Lawrence

Chairperson

25% ME GROUP

21 Church Street
Troon
Ayrshire
KA10 6SQ

enquiry@25megroup.org

www.25megroup.org