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 )

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/

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.

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

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.

Victim Role and Rebelliousness

MUPs may assume a victim role when PWME decide they do not like their ideas. When PWME have been ill for a few years, they have probably been given so many ‘good’ suggestions that they may lose patience. Some such suggestions are not wholesomely motivated examples of Christian kindness. Instead, they originate from fear of helplessness. Even the most puerile suggestion can give the ‘suggester’ some sense of control over fear of being helpless. But if a PWME rejects these the MUPs might feel victimized (and they are, to the extent that the PWME has deprived them of a defence).

MUPs that promote psychological research and interventions sometimes go rather further than people who simply recommend ‘Yak’s milk yogurt’; and sometimes appear to actively court controversy in the way they promote their theories. This suggests that among other psychological processes there may be a desire to be rejected and to become a victim.

Rejection and criticism result in a feeling of victimization which may provide psychic rewards and become a maintaining factor. MUPs may include in their persona the progressive thinker, dissenter, radical and challenger. Inspection of such notions among active MUPs appears to show that they operate within systems that ensure they are safe and encourage their activities; so they appear more like conformists playing at dissention, contriving a ‘victim’ role.

The victim role is revealed when MUPs complain about patients. Some MUPs also complain about patient activists and patient support groups. To these MUPs, patients that oppose their ideas might reinforce a belief that they are acting honourably and bravely, challenging convention and standing-up to wicked bullies to promote the truth.

A MUPs persona of being a victim might appear ridiculous but is probably not in the sense that they may be experiencing some unconscious persecution; in the form of guilt. This common human experience results in a frequently seen phenomenon. Films, TV programmes and stories, both fiction and non-fiction carry stories of people who are ‘wrongly accused’. This theme is common because almost anyone can identify with it as it connects to profound aspects of the psyche.

Being unjustly accused is a desirable occurrence – provided that people have the opportunity and resources to defend themselves (else they are simply Scapegoats). It is desirable because it provides the chance to suppress by denial and misdirection, deep inner guilt. The guilt may originate from aggressive feelings towards the parents – Good Breast / Bad Breast (Klein); and Oedipus / Electra (Freud/Jung). Also present may be denied anger at very critical or weak parents. These and other troublesome psychic factors can make a victim role an attractive defence; and this is aside from the fact that people who are falsely accused are ‘outside the law’ – so to speak; so their defensive behaviour is pre-justified.

So false accusations give an opportunity to be aggressively self-righteous, all other sins and crimes sink into the background, suppressed by the noble fight to achieve justice.

If the Freudian or Kleinian developmental stages mentioned above interact with a critical complex the result can be deep and painful guilt. The crushing fear and powerlessness created by this type of complex make them very difficult to confront – quite simply, the conflict destroys the courage needed to address the complex; making it a self-perpetuating feature of the psyche. One way of controlling such powerful conflicts without addressing them directly is by enacting them in the world through projections.

Aside 2

ARCHETYPE AND COMPLEX

An ARCHETYPE is a symbol of some aspect of being human. Some important archetypes are Mother, Father, Child, Self, Masculine, Feminine.

Around these symbols gather ideas that represent aspects of the archetype. i.e., the Mother COMPLEX might include; ‘nourishment, nurture, protection, boundaries, discipline, control’ etc.

A complex can become one-sided if only certain aspects seem acceptable. A one-sided Mother complex might acknowledge ‘nourishment, nurture, protection’ but deny or repress ‘boundaries, discipline, control’.

A person with such a one-sided Mother complex which becomes significant in an interpersonal relationship (regardless of whether man or women) may find that they cannot establish boundaries or discipline or have any control.

———————————————

Rebellious Child

Associated with unconscious guilt is likely to be the rebellious child. MUPs may enact a characterisation of this aspect of the child complex which may have been suppressed in favour of the obedient child; or may never have had an opportunity to be satisfactorily expressed if parents were over-indulgent. The suppressed or undeveloped side of a complex does not disappear or remain completely powerless nor unexpressed. To put it crudely, it leaks out and as Freud and others recognised, it manifests itself in ‘Freudian slips’ and other unconscious behaviour including projection.

MUPs could cope with the rebellious child by projecting the characteristic onto PWME and then ‘deal with it’ there. This would provide 2 opportunities for the MUPs psyche, and these are likely to be attractive maintaining factors.

First is an opportunity to gain control of the ‘child’, enact parental control and superiority and enforce the parent’s will. This would be an expression of the internal struggle to contain the rebellious aspect of the child complex.

Second, the MUPs may attempt to relate to the ‘child’ in their projection. The MUPs may seek a point of contact through which they can start to understand the ‘child’ and through which relationship can be established. Because the process is unconscious, based on a projection and lacks a Mediator to relate the conflicting sides this would almost certainly lead to failure. Either of these enactments would almost certainly be a useless and confusing experience for the PWME.

Aside 3

MEDIATOR

When opposing sides of a psychic conflict are exaggerated; i.e., one side is very ‘good’ and the other very ‘bad’; they are unlikely to be managed or related without the help of a Mediator. In the example of the Child Complex opposing sides might be the Obedient Child and the Rebellious Child. In the richness of human experience there would also be within the complex other characterisations of the Child – for example a playful or mischievous child. These other aspects of the complex may be able to relate to both sides of the conflict so encouraging and developing them would reduce the power of the conflict. A benevolent Parent characterisation might be help to start this process – but the final goal would be a self-balancing complex rich with possibilities and choices.

———————————————

If a MUPs doctor is enacting a one-sided complex through interaction with a PWME, they are likely to be entering into a confusing relationship with an aspect of their own psyche; and will find, as expected, they cannot control it. So rather than resolving the MUPs conflict, interaction with their projection reinforces the need for repression and projection.

In these interactions the rebellious child can slip into the proceedings and can be observed when MUPs fail to conceal contempt for PWME by casting aspersions, usually in an indirect but unmistakeable manner. This behaviour may be ‘justified’ by assertions of an intent to help but these barely conceal the urge to attack PWME. This is an unconscious expression of frustration and suppressed rage at not being able to freely express or adequately control the rebellious aspect of the child complex.

As such PWME may pose a constant challenge to MUPs which leads to circular reasoning and an addictive maintaining factor. Because PWME represent both rebelliousness and weakness, which MUPs both fear and envy – the possibilities for projection are endless. The psychic attraction of PWME to MUPs is immeasurable in their construction of a love-hate relationship that meets their conflicting urges. Unfortunately for the PWME, the most one can say is that they might be in there somewhere.

If this sounds excessively speculative, consider this: What is it about ME that attracts MUPs? A desire to help? Take a good hard look at the outcome of their ‘help’; now you get the picture.

People are drawn towards other people that fulfil their need for either psychic safety or growth – this can override everything (IMO). It is this drive that MUPs perceive in ME – in other words, they believe the patient will throw away almost everything important in their life in pursuit of some psychic need manifesting via erroneous illness beliefs. The irony is, that this is precisely what some doctors who are MUPs appear to be doing; throwing their lives away on ME. Their failure to actually help patients is irrelevant compared to the fabulous psychic reward of finding the ideal subjects for projection. That their time and talents are being wasted is a negligible price to pay.

People who have very frightening one-sided complexes might be burdened with the idea that they are cowards; and might desperately struggle to conceal this. As Stephen King points out in Dolores Claiborne, the one thing a coward must prevent at all costs – is allowing anyone to discover they are cowardly. To this end people suffering inner fear may try to compensate by doing things they believe are ‘brave’; and this does work in many instances when the realization dawns that it is acceptable to be afraid. The ego is then prepared to confront the real source of its fears. Until this is achieved some people may feel that it is not alright to be afraid or show fear. This can result in people not only denying fear in themselves but also attacking it wherever they perceive it.

Parents of Children with ME

If MUPs have significant issues relating to a parent or parent figure this will almost certainly feature in their interactions around ME. Parents who show concern for a child with ME may be seen as not behaving as ‘proper’ parents should behave. A MUPs with child/parent issues might be envious of the child and angered by the parent – whose natural behaviour they deem wrong. As a result, instead of attacking their own parents – which could be a repressed desire, a MUPs may attack other parents, accusing them of over protectiveness and causing the child’s illness.

When MUPs doctors blame parents for a child’s ME they supersede the parents. Both the parent(s) and child are self-deceived but the deceit is inferior to the MUPs knowledge and powers of perception – so here is superiority. The MUPs is being a ‘better’ parent and therefore they are assuming a parental role. This might result in an unconscious expression of , ‘I wish my parents had been firmer with me’, manifesting as inconsiderateness for the child and condemnation of the parents.

Alternatively, a MUPs may attempt to construct a reparative experience, psychically forcing themselves into the parent/child relationship as both parent and child. This could be done in an attempt to evolve some missing condition needed for their psychic development as a child. This would be a disastrous intervention in which neither the parents nor their child with ME would be real; but relegated to characters in a MUPs reconstructed and alternatively-enacted childhood.

Bullying

Emerging from aggression and fear and directed at vulnerable people, bullying might be a tempting reward for some MUPs and a maintaining factor. Bullying MUPs may be torn between a longing to be treated sympathetically and a desire to be abused – and may unconsciously believe this is also what other people want. As a result of confused understanding of what constitutes a healthy relationship, some MUPs might feel justified in behaviour that equates to bullying.

Against all logic and evidence some MUPs claim that people with ME get sympathy for being ill. This is possibly because they themselves confusingly long for both sympathy and chastisement. They appear oblivious to the fact that the stigma of an ME diagnosis is horrible, or that no amount of sympathy could compensate for the terrible pain, disability and losses of ME; so they probably perceive stigma as more attention. Confusion over what makes a healthy relationship can become a regressive neurosis that prevents maturity and results in expression of either childish-weakness or childish-authoritarianism. The ‘childish’ aspect of these behaviours is recognisable in denial of responsibility; denying the feelings of others and ignoring criticism.

Aside 4

SELF-REFLEXIVITY

This is the ability to be sensitively aware of one’s own thoughts and feelings, even when subtle. In self-reflexive people these useful messages get through to consciousness and can be helpful in understanding interpersonal relationships. Self-reflexivity can be hampered if many thoughts and feelings are shut out by introjected ‘shoulds’ and ‘oughts’ (Rogers). These ‘shoulds’ can dictate not only what behaviour is acceptable, but also what thoughts and feelings are acceptable. This kind of internal censorship can obscure insightful thoughts and feelings.

EMPATHY

This is the ability to understand another person’s feelings ‘as if’ they were one’s own; being able to put oneself ‘in another persons shoes’ and accurately sense what it feels like for them. This is different from simply observing other people and having feelings about those observations, because this lacks the ‘as if’ quality. Some problems may prevent or distort empathy such as autistic spectrum disorders, narcissistic personality disorder, etc.

———————————————

The desire to control Weakness and Power may be an initiating factor in some MUPs if their psychic needs draw them towards vulnerable people. Many physicians and other healers have the predisposing factors proposed above, to become MUPs (sometimes termed ‘the wounded healer’) yet many do not succumb because they have, countering qualities.

The most important countering qualities are self-reflexivity and empathy. These can help as honest self-examination when the healer thinks; i.e., ‘God, I really hate that patient’, and then asks ‘why?’; continues to question their reaction and tries to understand the patient. In self-reflexive people this can bring the conflicting desires; 1. help the patient kindly and 2. clobber the patient with a bed-pan; into consciousness where they can be simply contained and not allowed to sabotage the healer/patient relationship. Because the self-reflexive healer has thereby dissolved potential rewards for MUPs; i.e., opportunities to project and bully, they do not succumb.

This kind of self-reflexivity is closely connected to psychic development and the gradual balancing of one-sided complexes; but can be challenging because it threatens the sense of knowing what to do and how to be. The conditions for resolution of many neuroses are created when people accept confusion and helplessness. When the taught and introjected rules of thought and behaviour are found to be inadequate in the complexities of adult interpersonal relationships, it is essential for a maturing individual to accept the confusion and lack of control inherent in such situations. Attempts to control or dominate these interactions is an enactment of the parental control over the child (or vice versa); and are an attempt to simplify complex interactions because of inadequate resources.

From this one might see that if MUPs insist on ‘knowing’ (what is wrong with) and taking ‘control’ of patients (symptoms) with ME they are setting up a Projective Identification. A suppressed part of the MUPs personality – for example, a rebellious and uncooperative child; is projected onto the patient. Once this has happened the patient, as a human being, all but disappears behind the projection.

The projection may be reinforced by the patient’s response. The vulnerable patient, who may be very ill and desperate for help may find it impossible to remain authentic; true to themselves. The patient may be drawn into the MUPs projection when they either respond as they believe the MUPs wants or react negatively. Once this happens the Projective Identification may set like concrete and will be very difficult to shift. From this point the chances for an authentic Adult-to-Adult, or Healer-to-Patient relationship are almost zero.

Aside 5

———————————————

PROJECTIVE IDENTIFICATION

This occurs when a projection subject is manipulated into responding in a way that confirms the projection.

Jack thinks Jill has issues with anger. Jack is a passive/aggressive and anger is Jack’s unconscious problem but he is projecting it on Jill. Every time they meet he says something like, ‘I hope you are not angry’; ‘please don’t get angry with me’; finally Jill gets angry and tells him to ‘shut up!’. Now Jack’s projection is confirmed – ‘I knew she was angry’; and by now she is – so the projection is identified in Jill and becomes a 2-way aspect of their relationship.

———————————————

The Self-Serving Bias

Maintaining factors of MUPs may include a phenomenon known as the ‘Self-Serving Bias’. This is a tendency to blame other people for personal or systemic failures along with a tendency to take credit for successes. This natural characteristic can become exaggerated in egotistical people; those for whom being ‘right’ and ‘winning’ are imperatives. It may be an expression of deep-seated insecurity compensated by a super(wo)man-complex. This common trait can go too far to the extent that people can lose the capacity to blame themselves. This means they are unable to question their logic; acknowledge challenges or admit fault. People with this trait, are highly susceptible to flattery (which they will hotly deny – believing that their honesty and powers of judgment are so excellent, that if they think they are right, that is praise enough for them). Their inability to question their logic is due to an imperative to not change their minds – not to be wrong; and may go beyond simple arrogance or overconfidence to indicate a fragile psychic structure propping up too much ego that must be protected by ‘being right’. In other words, the fragility must be constantly repaired and reinforced because the consequences of being wrong is feared to be (and could be) catastrophic for the ego.

Fear of Movement

Some research papers refer to ‘fear of movement’ (kinesophobia) in people with ME. In every human at every point in their life, there exists some potential – and at every moment of their life they experience at some level the struggle between stasis; remaining the same; and growth; ‘moving’ into the potential person. Stay still too long and when the change/growth/movement comes it is likely to be an upsetting – though possibly also a cathartic experience.

Transformation almost invariably includes loss of something along with what is gained. Theorists that study the Phases of Life tend to believe that major transitions occur every few years and can sometimes be traumatic or at least dramatic in some way; but that once the transition is accomplished the person is reasonably set and stable for the ensuing phase. Whether development is continuous or phasic or includes both, there is always a possibility of some difficult undeveloped aspects of the psyche presenting problems.

So ‘fear of movement’ could be a projection of ‘fear of (psychic) movement’. The person who is perceived as afraid to move represents an inner fear of moving and transforming – with the threatened loss that accompanies such change.

‘Fear of movement’ theories might also represent an enactment of the battle of wills that can occur between parent and child, often occurring during the ‘terrible twos’ and the anal stage (Freud). Simply, the PWME says that movement is difficult, painful, exhausting; the MUPs says it is not, the PWME is just afraid; so to the MUPs this is a battle of wills.

This provides the MUPs with an opportunity to enact a representation of parental ‘bullying’, exercising power against a physically weaker, less powerful person. The MUPs assumes the role of power which is the parent, so in their enactment the PWME represents the child.

In the Anal phase, children of psychologically healthy parents get enough of their own little victories to begin to find their independence. If parents are excessively controlling or obsessive then children may fail to gain a balanced and sharing view of power and control – losing their ‘self-will’ and introjecting the parent’s will. If the parents are neglectful or overindulgent the child might miss out on learning to strive for and eventually, negotiate for their wishes.

In this important phase of development a warped process would be likely to result in major control and power issues. Claiming that a person severely incapacitated by ME is afraid to move is an enactment of an excessively controlling parent and a projective identification (in which the PWME does not have to do anything – which is just as well).

Deception

A fundamental factor in MUPs is that the patient is not believed. Patient’s statements about symptoms and disability are untrue – whether false, exaggerated or originating from misperception; they are not telling the truth. PWME can encounter this attitude just about anywhere, from the supermarket to their doctor’s surgery; from relatives to complete strangers writing in a newspaper.

This might relate to MUPs fear of being misunderstood, whilst at the same time believing that they cannot be understood. No one will believe them and their actions will be misinterpreted. In the curious balancing (or rebalancing) nature of the psyche this means they unconsciously seek to discover and understand deception.

This gives them power over deception; and because it relates to an inner sense of guilt – when deception is exposed it brings a sense of safety. The defences against the danger of being misjudged have been strengthened and the guilt remains hidden.

One conflict that might arise is a longing to be completely honest conflicting with a desire to keep something safely hidden – which might relate to what Jung described as ‘the secret’, ‘the rock on which the patient will break.’

This might lead to cunning behaviour and dalliance with risks that would expose the secret, an exciting game of ‘chicken’ or ‘catch me if you can’; which might at the same time strengthen defences against discovery of guilt. This leads to the Trickster.

The Trickster Archetype

Looking for the psychic liar and deceiver leads to an interesting archetype, that of the Trickster. A good example of the Trickster archetype is Gollum in Lord of the Rings. The Trickster may appear friendly and turn nasty or vice-versa, but in the end their activities and interaction with them results in growth and is generally desirable.

When MUPs perceive deception in ME they are unconsciously seeking input from the Trickster. This indicates that the psychic status-quo is ready and waiting to be disrupted; there is an unconscious drive to seek the challenges and chaos from which a matured ego can emerge.

The problem with the Trickster is that it cannot be controlled – that is its whole purpose in being unreliable, to remove control and deliver the reluctant psyche into chaos. All one can do with the Trickster is respond to it on an event-by-event basis, all knowledge and experience prove inadequate as the Trickster leads to greater and greater confusion and danger; as well as excitement and opportunity.

The MUPs disbelief of PWME suggests fear of losing control conflicting with a longing to plunge into the crazy world of the Trickster; where fragile (and useless) structures of the conscious ego will crumble and a matured, stronger ego can eventually emerge. As the Trickster may be a companion of the Hero it is the Hero that embarks on the journey into chaos and battles with the monsters found there. So here again we see the need for courage – a characteristic that some MUPs appear to assign to themselves, whilst denying the same in PWME. However, Heroes fight monsters in order to be heroic; they don’t go tilting at windmills.

Being Disabled

As mentioned above, at an unconscious level people are always seeking psychic growth and are drawn towards activities and other people that can provide opportunities for growth. As the greatest growth is almost always arduous and often frightening, the urge for growth is hampered by the longing for comfort and safety.

Considerable disability is seen in a substantial number of PWME, though they don’t always look ill or have obvious signs to connect with their disability. Therefore when the actual person and their illness and suffering is ignored or denied, PWME may be perceived as being like a dependent child. This might evoke envy in those who feel unsupported in some aspect of their lives and who long to regress into childish dependency. In such people any doubt about PWME’s entitlement to support is likely to evoke an aggressive reaction to what they perceive to be the fraudulent acquisition of what they desire.

Several theories/philosophies describe ideas about the importance of later life development with concepts such as Individuation, Self-Actualization, Psychosynthesis, Becoming, etc. A number of psychic factors can hamper this development to the point where they may render it an almost impossible goal. Fear is likely to be foremost among these when it is experienced from very one-sided complexes, but with almost equal power to stop growth, is ego-inflation. The sense of power and knowledge that come from getting some way into maturity can be highly seductive – and not altogether illusory. People who can get through the early, difficult and often embarrassing stages of developing the Inferior Function, integrating the Shadow and resolving some conflicts can gain some real wisdom – though not as much as is sensed. The sensation of power can lead to ego-inflation that without effort, honesty and humility can completely stop growth and lead to a warped personality.

Combined with fear, which makes movement challenging; ego-inflation could feel like a wonderful reward for staying right in one place – which would be the same as becoming psychically disabled. It would be little wonder therefore, if an egotistical MUPs was strongly attracted towards people who are disabled – but who ‘ought’ to get back into action. If this occurred it could be a projective identification with such an exquisite match that no input from the PWME is required – all they have to do is exist. In fact if they did not exist the MUPs would have to create them.

When honesty and humility are not enough to counter ego-inflation, people are sometimes helped by the astounding mistakes that can result from this warped state (though they may not always be ‘mistakes’ but unconscious contrivances; perhaps designed by the Trickster). Provided they do not wriggle out of these mistakes, they can be a powerful call to the inflated-ego to do some honest self-evaluation which restores human frailty to the ego; rescuing the psyche from stagnation and restoring the Self’s potential.

Conclusion

MUPs appears to be a defence. It can protect a fragile psyche from Fear, the discovery of guilt and subsequent blame and provides opportunities to project and avoid addressing inner conflicts. Because MUPs is an avoidant process it may become self-perpetuating.

© 2009 Peter Kemp

XMRV Retrovirus presentations: Klimas, de Meirleir, Hyde

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

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

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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

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

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

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

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.

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

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