Saturday, March 29, 2008

What is living with CFS like?

Imagine... struggling to get out of bed every morning.. feeling tired, dizzy
and dysfunctional after a good nights sleep.. imagine... walking a short
distance only to find that this excursion has totally exhausted you..
imagine.. having constant muscle and joint pain.. and feeling that someone
has stuffed cotton wool inside your head...and when you try to read.. the
words in a book.. just seem to swim off the page.. which then leaves you
feeling dizzy.. and sick..

Imagine... these symptoms lasting for years.. how would you cope?


The above is just touching on some of the symptoms of Chronic Fatigue
Syndrome.. and immune dysfunction syndrome (CFIDS), Myalgic
Encephalomyelitis (M.E.) or Post Viral Fatigue Syndrome (PVFS)
It is now estimated that there are up to 240,000 with (C.F.S.) in the UK. It
can affect men, women and children from low income and minority
communities... Mainly developing between early twenties.. and mid forty's.

The causes of (CFS).. are like that of the illness.. poorly understood.. it
often develops after a virus.. like flu or glandular fever.. and it has been
known to develop in the case that you have undertaken to have surgery done..
but... it can always develop for no obvious reason.. there are many trigger
factors.. but it is not always the case that you are in the position to
identify what triggered your condition.


With regards to the above information, regardless of what society has been
taught through the negativity that has been created via this so called
invisible illness...

Please give a thought for those that suffer...


What was that you say??? you can never imagine in a million years what we as
sufferers go through on a daily basis... but still you comment on how tired
we look???

Why???


Perhaps for a moment, unknowingly comment on what the eye can see... but
unfortunatly that has become our downfall....


We are REAL people suffering from a REAL illness... and if we were ONLY just
tired, we would sleep... and if (as society projects) we are lazy... why do
we struggle to gain or even try to maintain employment???

We as sufferers, have not only to deal with the negativity that society has
projected, but also the case factor that we have unfortunalty contracted "An
Invisible Illness"...


We as sufferers, are faced with a battle everyday to maintain that our hopes
and dreams will suffice...


Against our will, we have become victims of society...


Please take a moment of your time, to listen, learn and understand...

And we as sufferers, relentlesly pray for the day, that this illness is
recognised, and therefore, our "magic pill" will be available....

But until such a time that our fairytale becomes true.... we will be
subjected to that of a fable....

But to contradict the above, C.F.S./M.E. is not a fable, as we are REAL
people suffering from a REAL illness.... dreaming of a fairytale coming
true....


You may (or may not) know that there is an M.E./C.F.S. awareness day on May
12th, but due to the negativity of society, etc... I have now decided to
have an additional M.E./C.F.S. awareness day...

Perhaps now with 2 reminders a year... Society and the N.H.S. will realise
why we as sufferers NEED TO SPREAD MORE awareness of our debilitating
condition... with the hope that we will not be continually disregarded and
swept under the carpet, so to speak...

Please help this cause by forwarding this email to every contact in your
address book, sufferer or not, in the hope to raise more awareness other
than the so called negativity that society breeds...


Alone we are victims... together we are a team...


We will win this battle....

Do you know someone who suffers from M.E./C.F.S., or you want to know more
about this debilitating illness yourself, then find out at,
http://www.chronicfatiguesyndrome.me.uk


If you are a sufferer of this illness and need some support, or you are a
carer for someone with M.E./C.F.S., then come and join in the discussions
with fellow sufferers and carers on our support forum...
http://www.chronicfatiguesyndromeforum.me.uk



~Hugz~


Colin & Linda x
http://www.chronicfatiguesyndrome.me.uk

Friday, March 28, 2008

Dr. Hooper on Wessely's Theories (excerpts)

http://www.meactionuk.org.uk/Wesselys_Way.htm

Wessely's Way: Rhetoric or Reason?

Malcolm Hooper Margaret Williams

22nd March 2008

malcolm.hooper@virgin.net

On 22nd March 2008 the Financial Times carried an item by Glasgow GP Dr Margaret McCartney ("If it's in the mind, it's still the real thing") in which she stated that neither ME - to which she referred as "myalgic encephalitis" instead of the correct term myalgic encephalomyelitis - nor fibromyalgia (FM), nor repetitive strain injury (RSI) nor irritable bowel syndrome (IBS) "has a clear pathological or biochemical abnormality". She went on to confirm: "It's certainly true that many doctors see these kinds of symptoms as an irritating and time-consuming diversion from 'real' pathology".

Unfortunately for ME patients in the UK, such comments are nothing new.

The person whose work has had most impact on their lives is psychiatrist Professor Simon Wessely, whose twenty-year published record on ME patients underpins such ill-informed comments, for example:

"The description given at the Mayo Clinic remains accurate: 'The average doctor will see they are neurotic and he will often be disgusted with them' " (In: Psychological Disorders in General Medical Settings, ed: Sartorius et al; Hogrefe & Huber, 1990)

"Blaming symptoms on a viral infection conveys certain advantages, irrespective of its validity (and) is beneficial to self-esteem by protecting the individual from guilt and blame" (In: Post-Viral Fatigue Syndrome. ed: James Mowbray and Rachel Jenkins. John Wiley & Sons, 1991)

"It seems that ME sufferers prefer to feel they have a 'real' disease - it is better for their self-esteem" (Pfizer Invicta Pharmaceuticals 1992:4-5) "Patients with inexplicable physical symptoms are generally viewed as an unavoidable, untreatable and unattractive burden" (Brit J Hosp Med 1994:51:8:421-427)

"Somatisation sufferers consume vast amounts of health resources for little benefit" (Clin Exp Allergy 1995:25:503-514) "The term ME may mislead patients into believing they have a serious and specific pathological process. Several studies suggest that poor outcome is associated with social, psychological and cultural factors" (Joint Royal Colleges Report on CFS, October 1996)

"ME has never been fully accepted as a real condition, says Simon Wessely" (The Guardian, 21st April 1998). Note that the World Health Organisation fully accepted ME as a real condition in 1969 and continues to do so

"It is only human for doctors to view the public as foolish, uncomprehending, hysterical or malingering" (BMJ 2003:326:595-597)

"Science is indeed socially controlled, and so it should be" (The Guardian, 1st March 2003)

"Functional somatic syndromes include chronic fatigue syndrome" (Rev Bras Psiquiatr 2005:27:3). This is noteworthy, given that Wessely is on public record as stating: "I don't classify CFS as a somatoform disorder" (Wessely Answers Questions. 10th April 2002: CAME).

From the above quotations, it seems there may be an explanation why doctors such as Dr McCartney are so misinformed.

However, not only does it seem that Dr McCartney has been careless over her terminology but it also seems she has not kept abreast of the medical science that has revealed the pathological and biochemical abnormalities now known to underpin these disorders.

Moreover, she claims that the recommendation for cognitive behavioural therapy (CBT) in the NICE Guideline on "CFS/ME" does not imply a psychological cause because "behavioural treatments can be used to improve the quality of life of people who have diabetes, asthma, or cancer". This is undoubtedly so, but the key differences that seem to have been overlooked by Dr McCartney are that in those disorders, appropriate investigations and effective interventions are not ignored or proscribed and, importantly, behavioural therapy is an adjunctive and not the primary - indeed the sole - management recommendation as it is in ME/CFS.

Dr McCartney harks back to the much-criticised 1999 paper by psychiatrists Simon Wessely and Michael Sharpe in The Lancet ("Functional somatic syndromes: one or many?": Lancet 1999:354:936-939) and she quotes with seeming approval Professors Wessely and Sharpe: "The existence of specific somatic syndromes is largely an artefact of medical specialisation". Apart from the Lancet article to which she refers, Dr McCartney will doubtless be aware of Wessely's views on ME/CFS, fibromyalgia (FM), Gulf War Syndrome (GWS), the Camelford water poisoning catastrophe, the effects of chronic low-dose organophosphate (OP) poisoning and the adverse effects of mobile phones, since Wessely has not been reticent in publicising his views. He is certain that such disorders do not exist and that people who claim to suffer from them are deluding themselves because, he says, they are actually suffering from a mental (somatisation) disorder which, to quote Dr McCartney, is "the phenomenon of translating mental distress into physical symptoms". Wessely is certain that such symptoms are merely "the modern preoccupation with the state of our environment" and that they occur in "a few individuals with pre-existing somatisation disorders (and are) then diverted to fall in line with the prevailing ("disease"). Future investigations of environmental incidents should recall that social and cultural factors are as important as medical ones" (The Legend of Camelford. Anthony S David and Simon C Wessely. Journal of Psychosomatic Research 1995:39:1:1-9 --- see below).

The denial of the very existence of such disorders has become Wessely's trade-mark.

It was captured in the New Statesman almost a decade ago when in February 1999 Ziauddin Sardar wrote "Ill-defined notions": "When is someone sick, really sick? Who decides? By what criteria? The only thing that is certain is that you are only ill when someone says you are ill. Consider syndromes. Once this was a name for a collection of symptoms for which no clear cause had yet been found. Now it stands for a bunch of symptoms lacking even the security of certainty that they are actually there. Most notorious is 'chronic fatigue syndrome', known as 'ME'. Horror stories abound of people whom the psychiatric experts considered just to be faking. The same can be said of Gulf War syndrome. Even though 400 veterans have actually died and some 5,000 are suffering from illnesses related to Gulf War syndrome, the syndrome does not officially exist. Wessely has been arguing that ME is a largely self-induced ailment that can be cured by the exercise programme on offer at his clinic. Recently he published the results of 'the most definitive study' of Gulf War syndrome in the Lancet. It concluded - surprise, surprise - that there is no such thing as Gulf War syndrome. Clearly, Wessely is a follower of Groucho Marx: 'Whatever it is, I deny it' ".

These are profoundly serious issues in which Professor Wessely seems to have been shown to be completely wrong, yet no-where has it been possible to find a retraction of, let alone an apology for,the incalculable damage that many people believe his misinformed opinions and policies have caused. Although psychiatric disorders are diagnosed on opinion and not on a definitive diagnostic test, Professor Wessely demands "evidence-based medicine" supported by a definitive test and specific biomarkers before he will accept the reality of ME/CFS. Whilst there is as yet no specific diagnostic test, there is an abundance of biomarkers which support the diagnosis, but Professor Wessely continues his determined and sustained denial and dismissal of this scientific evidence that clearly proves him to be wrong.

As Philip Steer, Emeritus Professor, Imperial College, London, asks in the current issue of the British Medical Journal: "Could strict adherence to evidence-based practice be harmful to patients?" and he notes that: "'Conviction politicians' may be popular, but conviction doctors are potentially dangerous" (BMJ 2008:336:673).

Of even more concern is the fact that, despite having been shown to be so wrong about, for example, the Camelford disaster, Gulf War syndrome, the dangers of mobile phones, the nature of IBS, the nature of fibromyalgia and the nature of ME/CFS (for evidence, see below), Professor Wessely's influence over Government policy continues unabated.

The influence of his team in the NICE Guideline on "CFS/ME" featured in the 2007 R&D (Research & Development) annual reports by NHS organisations in England, in which the South London and Maudsley NHS Trust stated in section 2A ("Examples of impact on health and social care"): "We begin by summarising key achievements and follow with six examples that illustrate the impact of our research". The section on "Chronic Fatigue Syndrome" boasts: "In October 2006 NHS Plus published Occupational Aspects of the Management of Chronic Fatigue Syndrome: a National Guideline. It was accompanied by two additional leaflets, one for Health Care professionals and one for employers. This report was heavily influenced by research carried out at our Chronic Fatigue (sic) Unit. The NICE CFS/ME guideline also includes priority recommendations to which our research, led by Trudie Chalder and colleagues, has contributed: 'When the adult or child's main goal is to return to normal activities, then the therapies of first choice should be CBT or GET because there is good evidence of benefit for this condition in mild to moderately affected adults and some evidence in mild to moderately affected children'. As a result of our research we have developed our chronic fatigue syndrome service to include treatment at home. In addition we now offer telephone treatment routinely after demonstrating its effectiveness".

ME/CFS On 18th March 2008 The Daily Telegraph carried an item entitled "ME: 'Invisible disease' is now easier to read" by Bob Ward, who reported on the work of Dr Jonathan Kerr of St George's University of London (published in the Journal of Clinical Pathology and to be presented at an ME Research UK [MERUK] biomedical conference at the University of Cambridge on 6th May 2008). The article pointed out that Kerr's team has identified 88 genes that produce different levels of proteins and other molecules in ME/CFS compared with controls. In 2005 Kerr carried out a complex analysis and found that patients with ME/CFS can be divided into seven clinical sub-types according to specific gene combinations and the severity of symptoms. The most severely affected patients had 71of the 88 gene abnormalities. In his follow-up paper to which the Telegraph article referred, Kerr's earlier work was confirmed: (J Clin Pathol 2007: doi:10.1136/jcp.2007.053553): "In this study, for each CFS/ME subtype, we determined those genes whose expression differed significantly from that of normal blood donors. Genomic analysis was then related to clinical data for each CFS/ME subtype. Genomic analysis revealed some common (neurological, haematological, cancer) and some distinct (metabolic, endocrine, cardiovascular, immunological, inflammatory) disease associations among the subtypes. It is particularly interesting that in these genomically derived subtypes, there were distinct clinical syndromes, as would be expected in a disease with a biological basis".

Other researchers have noted that patients with ME/CFS can have "a genetic predisposition to an immunomodulatory response of an inflammatory nature, probably secondary to one or more environmental insults" (N Carlo-Stella et al. Clin Exp Rheumatol 2006:24(2):179-182). One would think that such evidence would lead to a change in attitude by Wessely School psychiatrists towards ME/CFS, but as has been noted countless times by many people, nothing seems to stop Wessely's influence on Government policy: a current example is the forthcoming conference on "CFS" to be held at The Royal Society of Medicine on 28th April 2008, about which Dr Derek Enlander from New York wrote on 21st March 2008 to the Editor of the Daily Telegraph: "Your article on gene research in ME was a breath of fresh air in the stale atmosphere of UK Government funded research. Over the years it has been shown to be a physical disease. The cause is obscure (and) this obscurity has been masterfully used by psychiatrists to claim that the disease is a manifestation of a psychiatric condition. What arrogance! The Royal Society of Medicine plays to this theme by running a conference on ME/CFS. The speakers are dwelling mainly on psychiatry - rather peculiar for a Society of Medicine. As far as I know the RSM has not noted these physical aspects. The Government through NICE continues to waste money on proven bad methods of treatment which, in a large number of cases, cause relapse. Surely, by now, the Government should be embarrassed". That ME/CFS is not a somatisation disorder is now beyond doubt because there is overwhelming evidence confirming it to be a multi-system organic disorder in which there is disruption of virtually every system in the body (for evidence, see http://www.meresearch.org.uk/information/researchdbase/index.html  and http://www.meactionuk.org.uk  -- between them, these sites contain over 3,000 published papers demonstrating that ME/CFS is not a psychiatric disorder). The item published on 18th March 2008 in The Daily Telegraph to which Dr Enlander referred above was indeed a breath of fresh air. As noted by Dr John Greensmith in his response: "There has been ample research evidence for M.E. as a discrete illness since 1956 and it has been endorsed by the WHO as a neurological illness since 1969, yet the Government's advisers, who are dominated by psychiatrists, have tampered with the M.E. entry in the British version of the WHO handbook (though it remains untouched in other countries) and have recommended two treatments on the basis of questionable research evidence, one of which, cognitive behavioural therapy (CBT) has no lasting benefit for people with M.E. and the other, graded exercise therapy (GET) may leave some patients irrecoverably worse. They say that they do not believe that M.E. is 'all in the mind' (but) since most patients are treated by psychiatrists, using treatments developed for psychiatric illnesses, most often in psychiatric units of hospitals, it is hard to think how otherwise they would treat them if they did believe it was of psychiatric origin. The situation does not look set to change. Indeed, a Royal Society of Medicine conference to be held on 28th April 2008, to which selected delegates have been invited and others told that they should not attend, is expected to recommend that this unproven service should be expanded" ( drjohngreensmith@mefreeforall.org ).

Nancy Klimas, Professor of Medicine at the University of Miami and an international expert on ME/CFS, affirmed: "Our patients are terribly ill, misunderstood, and suffer at the hands of a poorly informed medical establishment and society" (AACFS In-coming Presidential Address: Co-Cure 21st March 2005).

In January 2008, Klimas went on record: "As an immunologist, I once would have said (ME)CFS is clearly an immune dysfunction state, while an endocrinologist would have called attention to the adrenal gland irregularities, and a specialist in the autonomic nervous system would be convinced (ME)CFS is all about blood pressure abnormalities. Given what we've discovered about the illness, I now tell people (ME)CFS is all of these things. We know that (ME)CFS has identifiable biologic underpinnings because we now have research documenting a number of pathophysiological processes involving the brain, the immune system, the neuroendocrine system and the autonomic nervous system" (Historical perspective. Nancy Klimas. In: "Defining Moments - 20 years of making CFS History", published by the CFIDS Association of America, January 2008).

It is regrettable that such pronouncements do not receive anything like the publicity that Professor Wessely's pronouncements receive.

The latest evidence demonstrating the key finding that there is a low-grade inflammatory response in ME/CFS was published on 21st March 2008 in Clinical Science (VA Spence et al: Clinical Science 2008:114(8):561-566); this important paper adds to the existing body of scientific knowledge about ME/CFS that shows excessive cytokine production, disruption of the HPA axis and dysfunction of the autonomic nervous system, none of which can credibly be attributed to a behavioural disorder that is amenable to psychotherapy.

Professor Wessely and other members of the "Wessely School" simply ignore all this scientific evidence that proves them wrong and they remain committed to their own unshakable beliefs, which many people believe have resulted in unnecessary suffering of innumerable sick people.

Hooper on Wessely -- Part 2

Fibromyalgia

Just as he dismisses ME/CFS as a somatisation disorder, Professor Wessely likewise asserts that fibromyalgia (FM) also is a somatisation disorder - indeed, he asserts that it is the same somatisation disorder (Lancet 1999:354:936-939). He clearly believes this, but where is his evidence? There is none.

The scientific evidence, especially the more recent evidence, continues to mount and it does not support Professor Wessely's beliefs. He, however, rejects this substantial body of evidence that he is wrong.

The WHO classifies FM as a discrete disorder in ICD-10 at M79 under soft tissue disorders, not as a somatisation disorder.

The Mayo Clinic recently published "Fibromyalgia myths: The truth about 9 common myths", which stated "Fibromyalgia is a specific diagnosis" ( http://www.mayoclinic.com/health/fibromyalgia/AR00056 ).

Illustrations of research findings in FM include the following:

In 1997 it was shown that levels of somatomedin C are lower in FM patients (AL Bennett et al. J Psychiat Res 1997:31:1:91-96).

In 1998 researchers showed that levels of Substance P are elevated in FM patients (Evengaard B et al. Pain 1998:78:2:153-155). In 2003 it was shown that endothelin-1 is raised in FM patients (Pache M et al. Rheumatology 2003:42:493-494).

Research in 2005 indicated that FM is the result of internal biochemical imbalances that cause the physical symptoms (Co-Cure MED: 2nd January 2005: Fibromyalgia: new insights into a Misunderstood Ailment).

Different research in 2005 found elevated N(epsilon)-carboxymethyllysine levels in muscular tissue and in serum of patients with FM, with more intensive staining in the interstitial connective tissue of fibromyalgic muscles (Ruster M et al. Scand J Rheumatol 2005:34(6):460-463).

Again in 2005, more serious abnormalities were demonstrated by histologic studies particularly on electron microscopy, revealing disorganisation of Z bands and abnormalities in the number and shape of mitochondria: biochemical studies and P31 magnetic resonance spectroscopy showed inconstant abnormalities of ATP and phosphocreatine levels. The authors noted that "Mitochondrial abnormalities, reduced capillary circulation and thickened capillary endothelium may result in decreased availability of oxygen and impaired oxidative phosphorylation as well as ATP synthesis" and commented that these abnormalities do not seem to be the consequences of de-conditioning (Le Goff P. Joint Bone Spine 2005, November 9th).

In 2006, an important review in the Annals of the New York Academy of Sciences (Sarzi-Puttini P et al, Ann N Y Accad Sci 2006:1069:109-117) demonstrated orthostatic intolerance in FM, suggesting underlying abnormalities in cardiovascular neural regulation: "Research suggests that various components of the central nervous system are involved, including the HPA axis, pain-processing pathways, and the autonomic nervous system".

Again in 2006, research showed a greater prevalence of FM in HTLV-1 (human T cell lymphotrophic virus) infected individuals, suggesting that FM may be associated with this viral infection (Cruz BA et al: J Rheumatol: 2006:33(11):2300-2303).

In 2007, researchers at Yale University School of Medicine showed muscle hypoperfusion induced by regional vasomotor dysregulation in FM, noting that this vasoconstriction in muscle would lead to low-level ischaemia and its metabolic sequelae (Katz DL et al. Med Hypotheses 2007: March 19th).

More research into FM in 2007 demonstrated bladder symptomatology (Brand K et al. Clin Rheumatol 2007: May 3rd).

Further research in 2007 showed that autoimmune thyroiditis is present in an elevated percentage of FM patients and that patients with thyroid autoimmunity showed a higher percentage of dry eyes, burning or pain with urination, allodynia, blurred vision and sore throat (Bazzichi L et al. Clin Rheumatol 2007: May 9th).

In 2007, Bazzichi et al also showed evidence of abnormal levels of cytokines in FM: "The higher levels of cytokines found in FM patients suggest the presence of an inflammatory response system (IRS) and highlight a parallel between the clinical symptoms and biochemical data" (Clin Exp Rheumatol 2007:25(2):225-230). Another paper in 2007 revealed a conspicuous pattern of altered brain morphology, suggesting that FM is associated with structural changes in the central nervous system of patients (Schmidt-Wilcke T et al. Pain: 2007: June 21st).

In January 2008 researchers provided compelling evidence of a demyelinating polyneuropathy in FM, with electrodiagnostic (EDX) evidence of both polyneuropathy and demyelination. The authors concluded that 33% of FM patients have clinical and EDX findings of chronic inflammatory demyelinating polyneuropathy / CIDP. (Caro XJ et al. Rheumatology (Oxford) 2008:47(2):208-211).

In February 2008 researchers from McGill University, Montreal, Canada, presented evidence that "neurotransmitter studies show that FM patients have abnormalities in dopaminergic, opioidergic, and serotonergic systems" and that "studies of brain anatomy show structural differences between the brains of FM patients and healthy individuals" (Schweinhardt P et al. Neuroscientist 2008: February 12th).

Also in 2008, in a blinded study, skin biopsy samples showed electron microscopic evidence of unusual patterns of unmyelinated nerve fibres as well as associated Schwann cells, which the researchers considered may contribute to the lower pain threshold seen in FM patients (Kim SH et al. Clin Rheumatol 2008:27(3):407-411).

In a study published in March 2008, US researchers noted that previously, functional magnetic resonance imaging (fMRI) had shown that the insula displays augmented activity in FM, which means that neurons in FM patients are more active in this part of the brain. This linked to their own findings that pain decreased when levels of the brain molecule glutamate went down, glutamate being a neurotransmitter that conveys information between neurons in the nervous system (Clauw D et al. Arthritis and Rheumatism 2008:58:3).

Such research findings cannot rationally be dismissed, yet Wessely et al still insist that fibromyalgia is a somatisation disorder and they have deliberately included FM patients in the Medical Research Council's behavioural intervention trials on patients with "CFS/ME" in which "Wessely School" psychiatrists are the investigators, a diagnostic inaccuracy that would seem to make a mockery of the MRC's claim that it funds only studies of the highest scientific calibre, especially as in July 2004 a Minister of State (Dr Stephen Ladyman MP) made it known at a House of Commons All Party Parliamentary Group on FM that doctors were to be offered financial incentives to persuade patients with fibromyalgia to enter these MRC trials.

...

It cannot have been overlooked by Wessely et al that the work of Dr Jonathan Kerr of St Georges, London, has linked ME/CFS to OPs (J Clin Path 2005:58:826-832). Kerr et al suggest that patients with (ME)CFS "have reproducible alterations in gene regulation", noting that "sixteen genes were confirmed as having an expression profile associated with (ME)CFS. These genes can be grouped according to immune, neuronal, mitochondrial and other functions. These findings are consistent with previous work showing that patients with (ME)CFS have evidence of immune activation, such as increased number of activated T cells and cytotoxic T cells, and raised circulating cytokine concentrations. NTE (neuropathy target esterase) is a target for organophosphates and chemical warfare agents, both of which may precipitate (ME)CFS. EIF2B4 is a mitochondrial translation initiation factor and one of the EIFB2 family, within which mutations have been shown to be associated with central nervous system hypomyelination and encephalopathy. The involvement of genes from several disparate pathways suggests a complex pathogenesis involving T cell activation and abnormalities of neuronal and mitochondrial function, and suggests possible molecular bases for the recognised contributions of organophosphate exposure and virus infection".

In his subsequent paper referred to above (J Clin Pathol 2007), Kerr stated: "We have previously documented upregulation of NTE in (ME)CFS. NTE is the primary site of action of organophosphate (OP) compounds. Exposure to OP compounds may trigger CFS/ME and Gulf War Illness".

...

It is a matter of note that the 1996 findings of neurologist Professor Peter Behan from the University of Glasgow linking ME/CFS to chronic low-dose OP exposure were excluded from the Report of the Royal Colleges, given that Behan found ME/CFS to be clinically identical to chronic low-dose OP exposure and that such OP exposure "in some way prepared the patients for the later development of (ME)CFS". Behan reported that the abnormalities found in both ME/CFS and in OP poisoning were "compatible with a decreased responsiveness of CNS type II glucocorticoid receptors, (confirming) the hypothesis of brain steroid receptor resistance in patients with the delayed response to OPs and in (ME)CFS" (J Nutrition & Environmental Medicine 1996:6:341-350).

...

In ME/CFS specifically, there is evidence that the disorder is accompanied by an increased transloctaion of endotoxins of gram-negative enterobacteria through the gut wall, with signs of activation of the inflammatory response system and IgG3 subclass deficiency (Maes M et al. Neuro Endocrinol Lett 2007:28:6).

Clearly, the out-dated hypothesis that IBS is a psychosomatic disorder has been abandoned by those who fulfil their contractual obligations to keep up-to-date with medical science, yet Professor Wessely et al seem unaware of this progress in medicine.

Hooper on Wessely -- Part 3

Conclusion

In defiance of the extensive published evidence that ME/CFS and other disorders mentioned above are not psychosomatic, Professor Wessely's unremitting insistence that they are in reality but one single behavioural disorder seems indefensible.

In April 2000 an Opinion from a leading Queen's Counsel (who is a member of the House of Lords) was obtained about Professor Wessely's dogma on ME/CFS. That Opinion is concise:

"On the document you have sent me there is an overwhelming case for the setting up of an immediate independent investigation as to whether the nature, cause and treatment of ME as considered by the Wessely School is acceptable or consistent with good and safe medical practice. There is substantial doubt as to whether such could be the case. It is, of course, open to patients (and) their parents to seek Judicial Review".

In her letter of 2nd September 2003 to Professor Szmukler referred to above, the Countess of Mar wrote:

"Through his prolific output Professor Wessely has introduced his personal beliefs into the UK medical literature and those beliefs are aimed at changing the perception of ME/CFS held by both medical and lay people. Through the shortcomings of the peer-review system, his personal beliefs have become medical doctrine, effectively turning patients into victims".

Without doubt, there is substantial evidence in the public domain that Professor Wessely himself has carried out an unremitting campaign of denigration of ME sufferers. One of the most notorious was his involvement with a poll run by the British Medical Journal in 2002 in which doctors were asked to vote on what they considered to be "non-diseases". It is understood that it was Professor Wessely himself who nominated ME. Along with big ears and freckles, ME was duly voted a "non-disease" that should be left medically untreated.

It must be due in large part to such disgraceful antics and to the fact that Professor Wessely and other members of the Wessely School are Government advisers on "CFS" that people with ME/CFS are suffering politically-driven health discrimination which is contrary to the Disabled Discrimination Act.

There is a broad body of informed opinion - national and international -- that Professor Wessely belittles other peoples' work without addressing the issues. For a detailed exposition of the tactics of dismissal used by the Wessely School, see "The Mental Health Movement: Persecution of Patients? A Consideration of the Role of Professor Simon Wessely and Other Members of the 'Wessely School' in the Perception of Myalgic Encephalomyelitis (ME) in the UK. Briefing Paper for the House of Commons Health Select Committee" by Malcolm Hooper et al http://www.meactionuk.org.uk/SELECT_CTTEE_FINAL_VERSION.htm

Apart from the Wessely School's own studies, there is little published evidence to support the notion that CBT actually works in ME/CFS, and their own studies have been the subject of criticism on the grounds that many of their studies are deemed to be methodologically flawed, principally because of the authors' selection bias (i.e. they are not studying cases of true ME/CFS, but are then claiming that their results relate to ME/CFS).

For many years Professor Wessely has achieved considerable coverage of his views in the UK media on topics ranging from dental amalgam, "blaming mummy for a bad tummy" "the power of the placebo", "how long should a sick leave last?", bogus miracle cures, and total allergy syndrome to RSI (repetitive strain injury), so the national press coverage of the apparently exponential increase in rates of psychosomatic disorder and the alleged efficacy of CBT is substantial, with Professor Wessely being frequently quoted in the broadsheet newspapers.

Also, due in no small measure to Professor Wessely's apparent control over what gets publicly funded on ME/CFS (perhaps due his previous positions on three MRC Boards and to the fact that "Wessely School" members hold influential positions at the MRC) and what gets published on ME/CFS in the UK (perhaps exercised through his position as a member of the Scientific Advisory Panel to the Science Media Centre which was founded in 1999; it is funded by pharmaceutical companies and operates like a newsroom to promote the views of industry and to launch fierce attacks against those who question them), the medical journals frequently publish highly uncritical assessments of CBT which focus on the few studies which support its use, whilst ignoring those controlled trials which did not find CBT to be effective (and which warned about the dangers of exercising beyond fatigue).

This matter is the subject of an article entitled "A Subgroup Analysis of Cognitive-Behavioral Treatment Studies" by Fred Friedberg (JCFS: 1999:5: 3-4:149-159; co-published simultaneously as "Chronic Fatigue Syndrome: Advances in Epidemiologic, Clinical and Basic Science Research (ed) Roberto Patarca-Montero, Haworth Press Inc. 1999).

Friedberg, clinical professor in the Department of Psychiatry at the State University of New York, made the following cardinal points:

"Several studies of graded activity-oriented cognitive behavioural treatment for (ME)CFS, all conducted in England, have reported dramatic improvements in functioning and substantial reductions in symptomatology.

"On the other hand, cognitive behavioural interventions conducted in Australia and the United States have not found significant improvements in functioning or(ME)CFS symptoms.

"Furthermore, descriptive studies of CF (chronic fatigue) patients in England, the US and Australia suggest that the (ME)CFS population studied in England shows substantial similarities to depression, somatization or phobia patients, while the US and Australian research samples have been clearly distinguished from primary depression patients and more closely resemble fatiguing neurological illnesses".

Professor Friedberg notes the "widely divergent clinical presentations" and he notes specifically that because all the apparently successful CBT studies have all been conducted in England, a replication of these findings in a well-designed US study would be necessary before a general recommendation for CBT could be made.

Professor Friedberg's paper was published almost a decade ago, yet Professor Wessely's influence in the UK remains undiminished.

In a paper dated 8th March 2008 entitled "The Year of No Compromise" Greg Crowhurst, a health care professional whose wife is one of the most severely affected ME/CFS sufferers in the UK, said the following:

"This is a simple summary of the inferred messages underpinning the psychiatric paradigm, currently being heavily promoted in the UK".

Although written specifically in relation to ME/CFS, the summary applies equally to all disorders designated by Wessely et al as being "medically unexplained" which these psychiatrists assert are Functional Somatic Syndromes (FSS), including the disorders outlined above. These "Wessely School" psychiatrists in fact believe that ME/CFS, FM, IBS, non-ulcer dyspepsia, pre-menstrual syndrome, chronic pelvic pain, atypical chest pain, "hyperventilation syndrome", tension headache, temperomandibular joint pain, globus syndrome and multiple chemical sensitivity are but one single psychiatric disorder (Lancet 1999:354:936-939).

Crowhurst's summary exactly captures the situation in the UK:

"The recommendations:

q· do not investigate ME/CFS patients

q· do not provide special facilities for ME/CFS patients other than psychiatric clinics

q· do not offer special training to doctors about the disorder

q· do not offer appropriate medical care for ME/CFS patients

q· do not offer respite care for ME/CFS patients

q· do not offer State benefits for those with ME/CFS

q· do not conduct biomedical research into the disorder

The tactics:

q· the wreaking of havoc in the lives of ME/CFS patients and their families by the arrogant pursuit of a psychiatric construct of the disorder

q· the attempts to subvert the international classification of this disorder from neurological to behavioural

q· the propagation of untruths and falsehoods about the disorder

q· the building of affiliations with corporate industry

q· the insidious infiltration of all the major institutions

q· the denigration of those with ME

The practices:

q· the attempt to make "ME" disappear in a sea of chronic fatigue

q· the refusal to see or acknowledge the multiplicity of symptoms

q· the ignoring and misinterpretation of the biomedical evidence

q· the suppression of published findings

q· the vested interests

The impact:

q· the arresting and sectioning of protestors

q· the silencing of ME patients, through being given a psychiatric label

q· the suppression of dissent

q· the labelling of ME patients as the "undeserving sick", as malingerers

q· the forcible removal of sick children and adults from their homes.

"It is poignant how an institutionally supported prejudice against people with ME has arisen, based on nothing more substantial than supposition and opinion, carefully disseminated.

"You have to be very careful how you discern the truth; it is an important issue in the corporate wall of collusion surrounding the physically sick people who have ME.

"We have to be very clear about what is the truth about ME and what is either deliberate, naive or ignorant misinterpretation or misrepresentation. The impact of the above strategy on peoples' lives is catastrophic".

Crowhurst's article can be accessed at www.metrainingco.org.uk

As noted by Hooper et al, the malign influence of Wessely School dogma extends throughout Government departments, throughout the NHS, and even extends to the Judiciary, with one Claimant being told at a High Court Hearing that "Judges regard ME as psychological self-indulgence". One Local Health Board will only fund treatment for ME/CFS where the focus is CBT/GET. A spokesman for Grampian NHS Trust is on record in 2003 (disturbingly, this was a year after the publication of the UK Chief Medical Officer's Working Group Report) as stating "ME is not a condition we recognise or treat" (see "Illustrations of Clinical Observations and International Research Findings from 1955 to 2005 that demonstrate the organic aetiology of ME/CFS" http://www.meactionuk.org.uk/Organic_evidence_for_Gibson.htm  ).

The damage perpetrated on those with ME/CFS by Wessely School adherents cannot be quantified. The Wessely School argument that syndromes like ME/CFS cause "unnecessary expenditure of medical resources" has been criticised by a leading US researcher for its pernicious public policy implications (Lancet, 11th December 1999:354: number 9195).

In the UK, patients with ME/CFS, particularly children, have suffered gross and barbaric abuse and persistent denigration as a consequence of the beliefs of Wessely School psychiatrists who are attempting to control the national agenda for this complex and severe neuro-immunological disorder and who by their words and deeds have wreaked havoc in the lives of many ME/CFS patients and their families by their arrogant pursuit of a psychiatric construct of the disorder in clear defiance of the clinical and scientific evidence of the organic nature of ME/CFS.

There have been persistent and frequently covert attempts by these psychiatrists to subvert the international classification of ME/CFS, with destructive consequences for those affected.

It seems that Professor Wessely is accountable to no-one for his role in determining UK Government policy that the disorders mentioned above do not exist as discrete entities and that such patients should be "managed" by psychotherapy.

Instead, in return for his decades of denigration of patients (for actual quotations from his work see "Quotable Quotes about ME/CFS" available from the charity Invest in ME at 01603 - 701980) and for his denial and dismissal of the published evidence that he is wrong, and for all the seemingly consequential suffering and despair arising from his personal beliefs, Professor Wessely has been lauded and honoured.

On 27 August 2003, Dr George Szmukler, Dean of Psychiatry, Institute of Psychiatry, King's College Hospital, London, wrote to the Countess of Mar about Professor Simon Wessely: "Professor Wessely must be judged one of the most outstanding researchers in the UK, and indeed internationally. Professor Wessely has been awarded a Research Medal by the Royal College of Physicians specifically for his work on CFS and he has served on many prestigious scientific committees, further attesting to the high regard in which he is held by the scientific community".

Not everyone - including doctors and medical scientists from around the world -- shares that view.

http://www.meactionuk.org.uk

Thursday, March 27, 2008

$14M Award for CFS Patient denied disability benefits

Jury orders punitive damage of $14 million

Company refused sick woman benefitsUNION-TRIBUNE STAFF WRITERS

March 10, 2007

EL CAJON – While the jury deliberated this week inside the courthouse in El Cajon, plaintiff Darla Johnson laid down on a bench, her head on a pillow and went to sleep.


NANCEE E. LEWIS / Union-Tribune
Darla Johnson napped last week as a jury considered what punitive damages an insurance company should pay for denying her disability payments. She suffers from chronic fatigue and other conditions.
Johnson, 49, who suffers from chronic fatigue, lupus, fibromyalgia and an immune system disorder, spent much of the six-week trial with her head down on the table between her attorneys. Sometimes she rested on the floor, overcome by pain and exhaustion.

The Chula Vista woman was in court because her insurance company didn't believe she was sick. But a jury did.

On Thursday, the jury ordered Prudential Insurance Co. to pay $14 million in punitive damages on top of $1.5 million it awarded Johnson last week in compensatory damages to cover benefits the company had refused to pay.

“I feel vindicated, like a huge weight has been lifted,” said Johnson, earlier this week. “I know there's a long road ahead still.”

Prudential spokesman Bob DeFillippo said the company would ask Superior Court Judge Eddie Sturgeon to set aside the verdict, and if the judge doesn't, it plans to appeal.

“We think the verdict against Prudential is wrong,” DeFillippo said. “We believe that the award of punitive damages was excessive and exceeds the amount allowable under the law.”

Johnson's lawyer, Sean Simpson, disagreed, saying the award did not exceed the legal limit.

Harris Steinberg, a San Diego trial attorney who specializes in insurance law, said the nearly $15 million awarded Johnson “is on the high end” of what juries have historically awarded in such cases involving individual plaintiffs. Typically, punitive damage awards range from $1 million to $7 million, Steinberg said.

After hearing the jury's verdict, Johnson said she hoped Prudential has learned a lesson. “I want them to stop this,” she said. “They're just bullies.”

Simpson said he hoped the verdict would lead Prudential and other insurance companies to reconsider the way the evaluate disability claims.

Steinberg, however, doubted the verdict would change company practices.

“A lot of these folks who are handling these claims view it as a game," Steinberg said. He said companies sometimes feel it is cheaper to deny valid claims than pay them, thinking that most people won't fight back.

Johnson was the project manager in the construction department at the University of California San Francisco, when she was diagnosed with lupus, fibromyalgia, chronic fatigue and antiphospholipid antibody syndrome, a disorder of the immune system.

She would come home from work to her husband and 4-year-old daughter and drop from exhaustion. “I was always in pajamas and I was always in the chair. That's what my daughter remembers from our time in San Francisco,” she said.

In 1995, Johnson left her job and went on disability.

For five years, Prudential paid Johnson $3,130 per month, half her previous income. Johnson's family moved to San Bernardino County in 2000, where they bought a house. Prudential assured the lender of her future disability income.

Six months later, her benefits were terminated. The doctor Prudential had sent her to for an independent medical exam had filed a report saying Johnson wasn't disabled.

“He performed a perfunctory exam, he filed a perfunctory report,” said Charles Moore, one of Johnson's lawyers. “He was paid to find she wasn't disabled.”

Johnson filed two appeals with the insurance company, then turned to the courts, suing in August 2003.

The case went to trial in January of this year, and Johnson's lawyers argued that Prudential had targeted her because her chronic fatigue and fibromyalgia syndromes have no definitive cause. When the company realized it would be paying disability benefits until Johnson was 65, it terminated the benefits, Johnson's attorneys argued.

Prudential's lawyers, Robert Young and Stan Calvert, said that Johnson had not provided the insurance company with sufficient evidence of her disability.

An expert in insurance claims who testified for the defense said that in late 1999 or early 2000, Prudential began requiring more stringent objective evidence to support disability claims, such as X-rays and blood tests.

The $1.5 million Johnson was awarded in compensatory damages covers past and future benefits as well as general damages for the grief and inconvenience she suffered when Prudential refused to pay her claims. The company also must pay attorneys' fees, which is likely to be more than $500,000.

Simpson said it could take three years for Johnson to receive any money.

Elizabeth Fitzsimons: (619) 542-4577; elizabeth.fitzsimons@uniontrib.com

 

NFA President recognized by Business Magazine

http://www.fmaware.org/site/News2?page=NewsArticle&id=7017

CONGRATULATIONS, LYNNE!

Lynne Matallana
National Fibromyalgia Association
President and co-founder of the Anaheim-based organization; fibromyalgia affects about 10 million Americans

AGE: 52
Words to live by: “You have to be flexible.”
Role model: “Any woman who embraces the opportunities that perhaps were not there 100 years ago.”
What she has a lot of: Shoes


Matallana of Orange is living proof that she followed her pain into an international cause. Her nonprofit is a reflection of her desire to raise the efforts of diagnosis, which took too long when she was afflicted by the chronic pain disorder in 1995; the profile of the disease, which some still question; and the therapies to help those sufferers. There is good news on that last front: The FDA has approved Lyrica, a drug that helps ease their pain. As the New York Times reported this year: “Lyrica may…legitimize fibromyalgia, just as Prozac brought depression into the mainstream.”

Matallana, whose ongoing regimen includes a fitness plan built around her business trips, has helped with the educational part. “It takes a long time for people to come to understand a disease,” she says.

Educating health-care providers is a growing part of Matallana’s life: “The scientists are doing wonderful work, but without the perspective of the patient, they can’t make sense of all of the findings they are coming up with. So, when a patient and a health-care provider team up…we can be more successful in dealing with that illness.”

There is no cure for fibromyalgia. “What the association does is provide hope. I know that when I was lying in bed, if I had known that there were scientists researching it, and an organization…fighting every single day to find ways to help improve my quality of life, that would have given me strength. It will get better.”

* * *

I agree with Lynne -- one thing that has kept me from getting depressed is that my very first specialist in 1988 was one of the researchers working on it. 

OK, I didn't expect that 20 years later I'd still be waiting for a cure, but from the very first, I knew that this very talented, Ivy League trained virologist was intrigued and looking for answers, so I knew there was hope.  And that meant a lot to me.  I wasn't fighting this alone, there was at least one highly intelligent doctor with the correct training to find the virus and figure out what to do about it.  He gave me hope. 

Turns out that all he could give me was hope, because CDC has undermined CFS at every turn, but hope remains something to cling to in the darkest hours ... despite the efforts of CDC to define ME/CFS out of existence, we do have privately-funded researchers and foreign researchers not under the thumb of CDC who are making progress. 

And, thanks to the internet, I now know that there are other activists out there fighting the same fight I do, and we do keep each other's spirits up; one of us will be feeling like we're banging our head against a brick wall, and another will have the success of getting something published in a mainstream publication to get a few more people aware that CFS is neither depression nor laziness, but a valid physical ailment with biochemical causes, which gives us all reason to celebrate.

Potential for Stem Cell treatment of MS

> The potential use of adult stem cells for the treatment of multiple
> sclerosis (MS) and other neurodegenerative disorders.
>
>
> No specific treatment exists for patients with multiple sclerosis (MS) who
> fail to respond to conventional immunosuppressive and immunomodulating
> modalities.
>
> Furthermore, no method is available for regeneration of existing defect in
> the central nervous system (CNS).
>
> The ultimate goals of MS treatment, similarly to other autoimmune
> diseases, are twofold:
>
> First, to eliminate self-reactive lymphocytes and to prevent de novo
> development of self-reactivity by induction of self-tolerance.
>
> Second, attempting regeneration and repair of existing damage.
>
> In the case of MS, there is a need to stop the ongoing process of
> inflammation against the CNS by self-reactive lymphocytes thus
> facilitating spontaneous re-myelinization while in parallel attempt to
> recover existing neurological deficits caused by the autoimmune process
> resulting in demyelinization.
>
> Cell therapy stands out as the most rationale approach for neurological
> regeneration. In the absence of clinically applicable approaches involving
> the use of embryonic stem cells, we are investigating the feasibility and
> efficacy of enriched autologous mesenchymal stromal cells (MSC) injected
> intrathecally and intravenously to induce in situ immunomodulation and
> neuroprotection and possibly facilitate repair of the CNS in patients with
> MS and other neurodegenerative disorders.
>
> Our preclinical results suggest that bone marrow cells may provide a
> source of stem cells with a potential for migration into inflamed CNS and
> differentiate into cells expressing neuronal and glial cell markers. Based
> on the preclinical data, we are currently evaluating the safety of a
> similar therapeutic approach in a small group of patients with MS and
> other neurodegenerative diseases.
>
> Slavin S, Kurkalli BG, Karussis D.
>
> International Center for Cell Therapy & Cancer (ICTC), Tel Aviv Medical
> Center, 6 Weizman Street, Tel Aviv 64239, Israel.
>
> Clin Neurol Neurosurg. 2008 Mar 5 [Epubahead of print]
>
> PMID: 18325660 [PubMed - as supplied by publisher]
>
 http://www.docguide.com/news/content.nsf/PaperFrameSetOpenForm&refid=2191&specid=105&id=C6067883A4540D978525692600819ED4&newsid=852571020057CCF685257407003F6E95&prevpage=0&u=GOTO//www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Abstract&list_uids=18325660&ref=

* * *

Based on the similarities between CFS and MS, this may be a chance to piggyback on their research.  CDC seems more inclined to fund research into physical problems in MS than to fund the same research of the same problems in CFS.

The latest from Mary on the Consensus Document

http://www.cfids-me.org/index.html#consensus

I'm determined to start a Major Movement to adopt the Canadian consensus document - which is really a frontal assault on CDC.

I'm going to take some to Congress when the CFSAC meetings in May - and then take some more in November.  The main push will be between May and November, but I hated to miss out on a chance to make it an issue in May.

I think I also have to add a one page version of the Canadian consensus definition to add to the email letter - but the real purpose of the document is not in the definition, but in the DIRECTION it takes, which is AWAY from the CDC.  Lenny Jason did a study that showed the consensus definition picked out patients with more serious physical symptoms, while the new CDC definition picks out patients with more psychological symptoms.  Ahem.  And the Canadian docment actually discussing ways to TREAT patients - which seems anathema to CDC.  (There's a great box written by lenny in the summary document that rips CBT and GET to shreds.)

Sigh.

Just a little more work here.  Back to the drawing board.

Anyway, any comments/suggestions accepted -but get them in quickly.

Mary

Phase out of Incandescent Bulbs

I'm forwarding this message on behalf of Evelyne Muller of Right to Light.
I think the attachment may not come through so if you want to see a copy of
Right to Light's response to the British White Paper, please email them
directly.

Julia Cameron

----- Original Message ----- 
"Evelyne Muller" RighttoLight@yahoo.co.uk
Subject: The Phase-out of incandescent light bulbs and your health


> Dear Friends
>
> I attach a copy of Right to Light's response to the British White Paper
> on domestic lighting.  Its not exactly bed-time reading but I hope it
> will make you aware of the arguments that can be put forward to support
> our case for lightbulbs that are safe for use to use, both at home and
> in the places which we need to access.  Although the White Paper made
> depressing reading, I was heartened by the fact that an experienced
> CFS/ME physician and academic replied to my request for evidence and has
> himself written a response to the White Paper.  Until DEFRA publishes
> all the responses - which it will do shortly  on its website - he does
> not want to speak out publically.  However, he has said that he has observed over 25 years, seeing over 4,000 patients with ME, that a minority can get severe symptoms and relapses from fluorescent lighting.  He is therefore advising the government to research the health impact of CFLs and other technologies on the various illness groups affected before withdrawing incandescent bulbs.  He also advises that the responsibility should be with the lighting industry to show that these bulbs are safe for everyone to use.
>
> He has also sent his response to Action for ME for publication in their
> next InterAction magazine.  I think that this is the first time that an
> experienced and respected physician has acknowledged the problem that
> some people with ME have with fluorescent lighting and will hopefully
> help us to gradually gain access to the outer world.
>
> All good wishes to you and if you have any money left over from stocking
> up on light bulbs, plese remember that Right to Light needs funds!   If
> you can think of a suitable fundraising activity that you could do - a
> candlit coffee morning?! - that would be great.  Also, do pass this on
> to anyone who may be interested.
>
> Many thanks
> Evelyne Muller
> Co-ordinator, Right to Light
>

More debunking CBT as treatment for CFS

  There are some new comments on this article
  about cognitive dysfunction here:
  http://tinyurl.com/2nsmx4
  Amy Proal wrote this:
  "I too found CBT to be a total waste of money.
  I remember being on a huge waiting list to
  see a prestigious CBT doctor and then feeling
  exactly the same after many appointments.
  I used to think that perhaps I could
  "think my way out" of symptoms, but the MP
  has quelled that idea. Now that I realize
  the complexity of the dysregulation that
  occurs in chronic inflammatory disease,
  I understand how naive it is to think
  that we can change our biology by
  changing our thinking."

  If anybody is interested, there are
  other articles on Amy's web site.
  The interview with Greg Blaney M.D.
  who has a lot of patients on the
  Marshall Protocol and is on it himself
  is interesting, IMO.
  http://bacteriality.com/

  The required reading that needs to be
  done and understood before considering
  the Marshall Protocol takes most people
  months to do, but if anybody is interested
  it can be found at the MP study site:
  http://www.marshallprotocol.com/index.php

  Cure My Th1 is a new web site where
  questions about the Marshall Protocol
  are answered by patient advocates.
  http://curemyth1.org/

  Roy

  >
  > Apropos to the Dutch study debunking
  > the CBT "cure", this article uses it
  > in discussing the possible underlying
  > pathology of the cognitive dysfunction.
  >
  > http://tinyurl.com/3y7534
  >
  > Roy

March 2008 Fibromyalgia Newsletter

Subject: Fibromyalgia Monthly Newsletter, March 2008 - Common Fibromyalgia Symptoms

Fibromyalgia Monthly Newsletter
March, 2008

With featured articles on Fibromyalgia treatment and Chronic Fatigue Syndrome, information on treating Fibromyalgia, reviews of recommended products, and interviews with practitioners.


Related Fibromyalgia Articles:
. The Fibromyalgia Diet
. Finding Fibromyalgia Pain Relief
. Natural Remedies For Fibromyalgia
. Symptoms of Fibromyalgia
. Fibromyalgia & Acupuncture
. 14 Tips For Fighting FibromyalgiaCommon Fibromyalgia Symptoms
By Dr. Edward F. Group III, DC, ND, DACBN

In medical terminology, fibromyalgia is actually categorized as a syndrome, rather than a disease. A syndrome is a collection of common symptoms or characteristics that, when combined, constitute a disorder. Premenstrual syndrome is also defined in this way is it refers to the combination of symptoms (irritability, tension, headaches, bloating, gas, depression, fatigue, breast tenderness, and weight gain,) that affect some women prior to menstruation. The most common Symptoms of Fibromyalgia Syndrome include muscle pain, aches, stiffness, difficulty sleeping, and fatigue. Here's a closer look at each of these symptoms, and the treatment methods you can use to alleviate them.

Fibromyalgia Symptom: Pain
The pain from Fibromyalgia is both widespread and localized. This condition usually results in a general achiness and stiffness throughout the body. In addition, sufferers may feel pain at one or all of the "tender points" on the body. These "tender points" are designated sites on the body where tendon connects to bone. They are found in the areas of the shoulders, neck, back, arms, and buttocks. Many people have described the pain of Fibromyalgia to a "stabbing" pain that occurs all over the body. It can also be likened to the soreness and tenderness of the flu.

Treatment: Treating the pain of Fibromyalgia is a complex and lifelong journey. Talk with your health care provider about the diet, exercise, medications, and supplements that may work best in alleviating your pain.

Fibromyalgia Symptom: Sleep Disorders
The pain, stiffness, and aches of Fibromyalgia often make it difficult for sufferers to fall asleep and stay asleep through the night. One recent study found that Fibromyalgia is associated with a period of restlessness that disrupts REM sleep and diminishes deep sleep. As many as seventy percent of Fibromyalgia sufferers also suffer from sleep disorders, leading to chronic fatigue and exhaustion.

Treatment: Be as consistent as possible about your nighttime routine. Try to go to sleep and wake at the same times each day and stay away from long daytime naps. Avoid any caffeine or stimulants that could affect your sleep. And talk with your health care provider about other treatment methods that may help your sleep disorders.

Fibromyalgia Symptom: Fatigue
The fatigue that accompanies Fibromyalgia is pervasive and all encompassing. The sleep disorders that accompany the condition make it very difficult to obtain a restful night's sleep. Many Fibromyalgia suffers have noted that they wake up in the morning more exhausted than when they went to bed. More than ninety percent of people who are diagnosed with Fibromyalgia are also suffering from chronic fatigue. This fatigue and exhaustion can also lead to other symptoms such as a decrease in sexual desires, and lack of interest in daily activities, and a general feeling of malaise.

Treatment: As with the treatment for sleep disorders, it's important to be consistent with your nighttime routine, and limit daytime naps to one or two fifteen-minute naps. This may take a period of adjustment to get used to, but after a few days, it should help you sleep better at night and reduce your overall fatigue.

Fibromyalgia Symptom: Digestive Disorders
People who suffer from Fibromyalgia tend to reduce their activity levels in response to the pain. This in turn slows down the digestive system and could set the patient up for a roller coaster of constipation and/or diarrhea. One recent study found that thirty percent of Fibromyalgia sufferers also have trouble with digestive disorders.

Treatment: A healthy diet and exercise are the best medicine for digestive disorders. It can be difficult to keep moving and to eat healthy when the pain of Fibromyalgia sets in, but the benefits will far outweigh the pain in the long run. Although, it may also be wise to look into an accredited colon cleansing product to cleanse your body of toxins that may have accumulated over the years.

Other Symptoms
Tension or migraine headaches
Approximately fifty five percent of Fibromyalgia patients also report suffering from chronic tension or migraine headaches. These headaches can be a direct result of the pain and fatigue thatalso accompanies Fibromyalgia.

Treatment: Talk with you health care provider to determine the types of headaches you are experiencing and the best method for treating them. He or she may recommend dietary changes, medication, or nutritional supplements.

Anxiety and Depression
Anxiety, stress and depression go hand in hand with Fibromyalgia, but it can often be difficult to determine which illness is the cause and which is the result. Regardless, the pain, fatigue, sleep disorders, and general feelings of malaise that accompany fibromyalgia can often trigger feelings of anxiety, stress and depression. Many Fibromyalgia sufferers feel hopeless and helpless in their condition.

Treatment: Don't try to go through this alone. Fibromyalgia can be a physically and emotional exhausting illness. Stay connected with family and friends that can help you work through the emotional burden of your condition. Also, locate a Fibromyalgia support group where you can meet other people that can empathize with your symptoms and offer guidance for your recovery.

A Fibromyalgia Support Group can also keep you in touch with the latest news and events for more information. To instantly chat with others whom suffer from Fibromyalgia, we recommend the Fibromyalgia Forum.



Global Healing Center, Inc., 2040 North Loop West, Ste. 108, Houston, TX 77018, USA

Dr. John and Dr. Enlander speak out on British conference

From: DEnlander@aol.com

  Letter to Daily Telegraph, London
  ~~~~~~~~~~~~~~~~~~~~~~

  Letter to Editor
  Daily Telegraph
  London

  21 Mar 2008

  Sir,

  Your article this week on Gene research in Myalgic
  Encephalomyelitis by Dr Jonathan Kerr in St George's
  Hospital was a breath of fresh air in the stale
  atmosphere of UK government funded research.
  Myalgic Encephalomyelitis and Chronic Fatigue
  syndrome are commonly referred to as M.E. and
  C.F.S.

  In 1955 Dr Melvin Ramsay reviewed a cohort of
  young doctors and nurses in the Royal Free Hospital
  in London and published a report relating to their
  massive debilitating fatigue. Over the years it has
  been shown to be a physical disease.

  The cause is obscure, this obscurity has been
  masterfully used by psychiatrists to claim that the
  disease is a manifestation of a psychiatric condition,
  leading to an imagined problem. What arrogance !

  The esteemed Royal Society of Medicine (RSM) plays
  to this theme by running a conference next month on
  ME / CFS. The speakers are dwelling mainly on
  psychiatry, rather peculiar for a Society of Medicine.

  Most of the estimated 190,000 patients in the UK
  who suffer from this disease are appalled. A large
  number of them have applied for a demonstration
  permit outside the RSM to bring this wrongful thrust
  to the nation's and RSM's attention.

  The following week, May 6th, a conference in ME /
  CFS will take place at Cambridge University where
  the latest methods of diagnosis and treatment will
  be defined. Dr Kerr will speak on the Genome in ME /
  CFS.

  Dr Klimas, a noted researcher and clinician in Miami
  Florida, will speak on new developments and
  diagnostic methods and I will speak on the methods
  of treatment both in the UK and the USA.

  As far as I know the RSM has not noted these
  physical aspects and has not altered its agenda in
  the April conference.

  The government through NICE continues to waste
  money on proven bad methods of treatment, based
  on forced exercise therapy which, in a large number
  of cases, cause relapse.

  Research on the physical basis of the disease has to
  be funded by private foundations, CFS Research
  Foundation, ME Research UK and patient money.

  Surely, by now, the Government should
  be embarrassed.

  Derek Enlander MD, M.R.C.S., L.R.C.P.
  New York


  ~~~~~~~~~~~~~~~~~~~~~~~
  Send an Email for free membership
  ~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:
  >>>> Help ME Circle <<<<
  >>>> 20 March 2008 <<<<
  Editorship : j.van.roijen@chello.nl
  Outgoing mail scanned by AVG AV
  ~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:~:

  From: ME Free For All.org <drjohngreensmith@mefreeforall.org>

  Re: ME: 'Invisible disease' is now easier to read
  (Daily Telegraph, 18 March 2008)

  I was very pleased to see such a good letter from
  Dr Derek Enlander, in response to this article
  about Dr Jonathan Kerr's work in the Daily
  Telegraph this week (ME: 'Invisible disease' is
  now easier to read, Daily Telegraph, 18 March
  2008).

  Here's mine. If you have one, which may help one
  of us get published and which we would like to put
  on our website whether yours gets chosen or not,
  the e-mail address is dtletters@telegraph.co.uk

  Best wishes
  John

  ``````

  Daily Telegraph Letters.

  I believe that your newspaper is the only one in
  Britain, this week, to cover, arguably, the most
  promising research in M.E. (ME: 'Invisible disease'
  is now easier to read, Daily Telegraph, 18 March
  2008), a measure of the neglect which, I am sad
  to say, is reflected in those who make the
  decisions and control the purse strings.

  There has been ample research evidence for M.E.
  as a discrete illness, with a physiological cause,
  since it was first named (Myalgic, pertaining to the
  muscles, encephalo-, relating to the brain and
  spinal cordand -itis, meaning inflammation) by the
  late Dr Melvin Ramsay in 1956 and it has been
  endorsed by the World Health Organisation
  (WHO), as a neurological illness, since 1969.

  The overwhelming experience of lassitude is much
  more than the word "fatigue" alone can express
  and, although, it is possible to have a psychiatric
  illness in addition to M.E., it is rare and it is neither
  a prerequisite cause nor effect of it. So, it would
  seem quite logical and uncontroversial to pursue a
  bio-medical approach to research, rather than a
  psycho-social one.

  Yet the Government's advisers, both before and
  since the Chief Medical Officer's Report on M.E. in
  2002, when Sir Liam Donaldson found it a "real
  illness for real people, left in the wilderness too
  long", who are dominated by psychiatrists, have
  pressured doctors into preferring Chronic Fatigue
  Syndrome, even though patients say that it does
  not present like normal tiredness and is not
  refreshed by sleep.

  They have tampered with the M.E. entry in the
  British version of the WHO handbook (though it
  remains untouched in other countries) and they
  have recommended two treatments, on the basis
  of questionable research evidence, one of which,
  Cognitive Behaviour Therapy (CBT) has no lasting
  benefit for people with M.E. and the other,
  Graded Exercise Treatment (GET), which may
  leave some patients irrecoverably worse.

  They say that they do not believe that M.E. is "all
  in the mind" and that they do promote biomedical
  research but we have seen no evidence of funding
  for the latter and every penny of the £8.5 million
  to start, then millions more each year to sustain it,
  has gone into a network of clinics offering these
  management techniques.

  Since most patients are treated by psychiatrists,
  using treatments developed for psychiatric
  illnesses, most often in psychiatric units of
  hospitals, it is hard to think how otherwise they
  would treat them if they did believe it was of
  psychiatric origin.

  Meanwhile, work of the pedigree of Dr Jonathan
  Kerr's has to depend on charity. The Medical
  Research Council (MRC) has turned down every
  set of biomedical research proposals offered.

  It is understandable how frustration amongst M.E.
  sufferers, who remain ill sometimes for decades,
  sometimes boils over and is directed outwards in
  anger at the individuals who have steered things
  this way; sometimes that emotion simmers under
  a lid and is turned inwards until some people
  choose to take their own lives rather than endure
  the suffering any longer.

  The situation does not look set to change. Indeed,
  a Royal Society of Medicine (RSM) conference to
  be held at the end of next month (28 April 2008),
  to which selected delegates have been invited and
  others told that they should not attend, is
  expected to recommend that this unproven
  service should be expanded.

  The M.E. Community will hope and pray that it can
  scrape together sufficient funding to support work
  to find the solution to M.E. before much more
  harm is done to its sufferers.

  Yours sincerely
  drjohngreensmith@mefreeforall.org
  Dr John H Greensmith

 

Disability cases backlogged

http://www.washingtonpost.com/wp-dyn/content/article/2008/02/28/AR2008022803625.html?wpisrc=newsletter&wpisrc=newsletter&wpisrc=newsletter

The number of disability cases waiting for a decision has swelled to more than 750,000, causing applicants to wait, on average, 499 days. Despite efforts to control the backlog, delays have increased rather than decreased.

Most Americans seeking disability benefits have been turned down once or twice in their states and file federal appeals with Social Security. The agency's administrative law judges, or ALJs, award benefits in 62 percent of the cases that they hear.

The approval rate reflects the nature of the federal hearing process. ALJs usually work from a more complete medical record and hear directly from the claimants, who are often accompanied by lawyers. Although the ALJs work for Social Security, Congress has awarded them a large degree of independence in how they reach decisions.

Astrue said most ALJs do a good job, but he made it clear he has no power to discipline bad apples in their ranks. He said he is frustrated by his inability to deal with "gross misconduct" by judges, especially those accused of fraud, domestic violence and soliciting prostitution.

Astrue also said that one ALJ has not completed a disability benefit case in seven years, and another completed only 40 cases last year -- far below the 400 to 500 cases that the agency expects judges to finish each year.

Patrick P. O'Carroll Jr., inspector general at Social Security, said it is that kind of performance that is having "a negative effect" on bringing down the disability backlog. In fiscal 2006, he said, the cases handled by ALJs ranged from a low of 40 to a high of 1,805. About 30 percent of the judges processed fewer than 400 cases per year, he said.

 * * *

One reason for the backlog is that people like me -- who have doctors and VocRehab experts saying unequivocally that I cannot work -- are forced to go back time and again because the judge decides that his medical knowledge exceeds that of the doctors and ignores all the expert testimony in order to repeatedly rule that there is nothing wrong with me (despite all the medical evidence saying there is) and that I could work if I tried harder (despite my testimony that a couple days of part-time work sent me back to bed). 

As this article points out, there's not a damn thing they can do about judges like mine who overstep their discretion to turn down every applicant regardless of the evidence.

The disability system is the only court in the United States where you're not "innocent until proven guilty", but rather, assumed to be guilty of trying to defraud the system until you can prove that you're innocent (i.e., truly disabled). 

All I can do is keep appealing and appealing (and tying up the system further) until someone, somewhere, honestly considers all the evidence: the seriously out of whack blood tests, the orthopedic problems, the number of doctors and VocRehab people who have stated that I cannot work, and reaches the correct conclusion, that someone who has that many expert opinions saying she can't work is legally entitled to disability benefits.

Tuesday, March 25, 2008

What's up here....

Today I had to get my annual doctor's form certifying that I'm still disabled.

The doctor's scale concurs with mine that I have lost 10 pounds in the past year.  :) Typically, when I start losing weight, it's a sign that I'm going into remission.  Fingers crossed; I feel better than I did when I was sleeping only 2 hours a night, but I haven't noticed any major improvement in my health over the past year (in fact, I've just in the last couple weeks once again made myself sicker by pushing the limit on the hours I can work).  But, this may be the first herald of spring, and the improvement in health will follow the start of the weight loss.

Since they have a habit of intentionally misinterpreting answers (e.g., when a prior doctor stated that my "current" condition was effective on the date of the appointment, meaning that my condition had changed since the prior appointment, they concluded that the doctor meant that I had not been disabled prior to the current appointment), my doctor pointed out to me that we should make clear to them that his accurate answer that he did not tell me to stop working full-time did not mean that he did not think that I was disabled, but that I had already lost my job by the time I saw him, so there was no need for him to tell me to stop what I was no longer doing.

For those readers who are dealing with disability issues, you may want to include a cover letter (indicating a copy to your state Department of Insurance) clarifying such statements before they're held against you.  If the doctor says your condition has changed, make sure that you explain to them that where it says "current" on their forms, your doctor took that to mean "current", and was not commenting on your past condition, he's not saying that you weren't disabled before, just that your current condition is not identical to what it was last year.  If you've changed doctors after losing your job, make sure to point out that there is a reason this doctor did not tell you to stop working, and that reason is not that the doctor thinks you can still work.

Unlike most legal systems in the US, where you are "innocent until proven guilty", in the disability system you are considered guilty of attempting to defraud the system until you've proven yourself innocent.  The system is stacked against you, and making sure that what a doctor says cannot be taken in any way other than the way he meant it can only help you.

Remember, I gave orthopedic reasons for why I could not do certain things, and the clause "because of locked shoulder" was excised to make it sound that I didn't get dressed because I was too depressed to care, rather than the truth, that because of the frozen shoulder (a known CFS symptom), I had to perform painful contortions to get into a shirt and it just wasn't worth torturing myself twice a day and enduring hours of pain as a result, if it was not mandatory that I change out of my jammies -- their goal is to say whatever they can say to make it appear that you're either faking or have psychological problems and to minimize the physical problems, so that they don't have to pay you benefits.

Sunday, March 23, 2008

Conference: Viruses in CFS

Most of the big names will be there!  I wish there were a way to get the detractors and unbelievers to go, so they'd get the message that the evidence shows that the ORIGINAL type of CFS is post-viral and not psychiatric.  (Unfortunately, too many sloppy and/or uninformed doctors have diagnosed any case of fatigue as CFS, regardless of origin.) 

Source: HHV-6 Foundation
Date:   March 2008
URL:    http://www.hhv-6conference.com
        http://www.hhv-6conference.com/satellite/
        http://www.hhv-6conference.com/satellite/regform_cfsonly.php
        http://www.hhv-6conference.com/program/index.php


6th International Conference on HHV-6 & 7
-----------------------------------------
June 19-22nd 2008, Baltimore, MD


Satellite Conference on Viruses in CFS
--------------------------------------
Baltimore, Maryland USA - June 22nd-23rd, 2008

Due to new research suggesting the possibility of a viral etiology in a
subset of CFS patients, we are sponsoring a special satellite session
June 22nd-23rd titled 'Viruses in CFS'.

Sun - June 22nd
  15:10-17:00 Infections in CNS Dysfunction/CFS
Mon - June 23rd
  09:00-12:00 Viral Infections in CFS
  13:00-15:00 Viral Infections in CFS
  15:10-17:00 Infections in CNS Dysfunction/CFS

Speakers to include (list incomplete):
* Jose G. Montoya, MD, Stanford University, USA (HHV-6 & EBV)
* John Chia, MD, EV Med Research, Lomita, CA, USA (enterovirus)
* Andrew Lloyd, MD, UNSW School of Medical Sciences (post viral fatigue)
* Anthony Komaroff, MD, Harvard Medical School, Boston, USA (infections in
  CFS)
* Brigitte Huber, PhD, Tufts University, Boston, MA, USA (retrovirus)
* Keizo Tomanga, PhD, DVM, Osaka University, Japan (borna virus)
* Nancy Klimas, MD, University of Miami, Florida, USA (immune markers in
  viral infections vs CFS)
* Kazuhiro Kondo, MD, PhD, Jikei University School of Medicine, Tokyo, Japan
  (HHV-6 & 7)
* Ron Glaser, PhD, Ohio State University Medical Center, Columbus, Ohio, USA
  (EBV)
* Jonthan Kerr, MD, PhD, St. George's, University of London, UK (parvovirus,
  gene expression)
* Dan Peterson, MD, Sierra Internal Medicine, Incline Village, USA (novel
  viruses in CFS)
* Birgitta Evengard, MD, PhD, Umea University, Uma, Sweden (viral markers in
  CFS)
* Suzanne Vernon, PhD, CFIDS Association of America, USA

Satellite Conference Topics:
* HHV-6 & 7 co-infections in CFS
* Borna virus in CFS
* EBV in CFS
* Post infective CFS/Post Viral Fatigue
* Parovirus B-19 in CFS
* Retrovirus K-18
* Entero-virus

Program Committee
* Dharam Ablashi, DVM, MS, Dip. Bact., HHV-6 Foundation, USA
* John Chia, MD, EV Med Research, Lomita, CA, USA
* Jonthan Kerr, MD, St. GeorgeĆ¢€™s, University of London, UK
* Jose G. Montoya, MD, Stanford University, USA
* Andrew Lloyd, MD, UNSW School of Medical Sciences
* Anthony Komaroff, MD, Harvard Medical School, Boston, USA

Advisory Committee (Committee still in formation)
* Leonard Archard, PhD, Imperial College, London, USA
* Robert Gallo, PhD, Institute for Human Virology, Baltimore, USA
* Ron Glaser, PhD, Ohio State University Medical Center, Columbus, Ohio, USA
* Sudhir Gupta, MD, PhD, MACP, University of California Irvine, Irvine, USA
* Brigitte Huber, PhD, Tufts University, Boston, MA, USA
* Kazuyoshi Ikuta, PhD, Hokkaido Unversity, Japan
* Nancy Klimas, MD, University of Miami, Florida, USA
* Kazuhiro Kondo, MD, PhD, Jikei University School of Medicine, Tokyo, Japan
* Martin Lerner, MD, Wayne State University, Michigan, USA
* Lieve Naesens, PhD, Rega Institute for Medical Research, Leuven, Belgium
* Dan Peterson, MD, Sierra Internal Medicine, Incline Village, USA
* Nigel Pluck, MD, Roche Products, Ltd., Hertfordshire, UK
* Suzanne Vernon, PhD, CFIDS Association of America, USA
* Koichi Yamanishi, MD, PhD, National Institute of Biomedical Innovation,
  Osaka, Japan

Organizing Committee
* Dharam Ablashi, DVM, MS, Dip. Bact., HHV-6 Foundation, USA (Chair)
* Courtney Hischier, HHV-6 Foundation, USA
* Anthony Komaroff, MD, Harvard Medical School, Boston, USA
* Kristin Loomis, HHV-6 Foundation, USA


Interested in Just the Viral Infections in CFS Conference?

Attendees who are interested primarily in the role of HHV-6 in CNS
Dysfunction and CFS may choose to attend just the satellite conference, or
for a discount rate, arrive early and attend the last day of the main
conference which will be devoted exclusively to HHV-6 in CNS Dysfunction.

Viruses in CFS Registration Form
   http://www.hhv-6conference.com/satellite/regform_cfsonly.php

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
6th International Conference on HHV-6 & 7
-----------------------------------------

Conference Co-Chairs
* Robert Gallo, MD, Institute for Human Virology, Baltimore, USA
* Philip Pellett, PhD, Wayne State University, School of Medicine,
  Detroit, USA

Program Committee Co-Chairs
* Dharam Ablashi, HHV-6 Foundation, USA
* Steve Jacobson, NINDS/NIH, USA
* Philip Pellett, PhD, Wayne State University, School of Medicine,
  Detroit, USA
* William Theodore, MD, National Institute of Neurological Disorders &
  Stroke, NIH, Bethesda, USA

Program Committee
* Dharam Ablashi, DVM, HHV-6 Foundation, Santa Barbara, California, USA
* Henri Agut, MD, PhD, Hospital Pitie-Salpetriere , Paris, France
* Roberto Alvarez-LaFuente, MD, Hospital Clinico San Carlos, Madrid, Spain
* Louis Flamand, PhD, University Laval, Quebec, Canada
* Niza Frankel, PhD, Tel Aviv University, Tel Aviv, Israel
* Robert Gallo, MD, Institute of Virology, University of Maryland, USA
* Ursula Gompels, PhD, London School of Tropical Medicine, London, UK
* Caroline Hall, MD, University of Rochester, Rochester, USA
* Steve Jacobson, PhD, National Institute of Neurological Disorders &
  Stroke/NIH, USA
* Anthony Komaroff, MD, Harvard Medical School, Boston, USA
* Paolo Lusso, MD, PhD, San Raffaele Institute, Milan, Italy
* Jose G. Montoya, MD, Stanford University, USA
* Lieve Naesens, PhD, Rega Institute for Medical Research, Leuven, Belgium
* Philip Pellett, PhD, Cleveland Clinic, Ohio USA
* William Theodore, MD, National Institute of Neurological Disorders &
  Stroke, NIH, Bethesda, USA
* Koichi Yamanishi, MD, PhD, National Institute of Biomedical Innovation,
  Osaka, Japan
* Tetsushi Yoshikawa, MD, Nagoya University School of Medicine, Toyoake
  Aichi, Japan

Advisory Committee
* Yoshizo Asano, MD, PhD, Fujita Health University, Toyoake, Aichi, Japan
* Edward Bromfield, MD, Harvard University, Boston, USA
* Don Carrigan, PhD, Wisconsin Viral Research, Milwaukee, USA
* Mary Caserta, MD, University of Rochester School of Medicine, Rochester,
  NY, USA
* Erik De Clercq, MD, PhD, Rega Institute for Medical Research, Leuven,
  Belgium
* Vincent Descamps, MD, PhD, Bichat Claude Bernard Hospital, France
* Leon Epstein, MD, Northwestern University, Chicago, USA
* Nihal De Lanerolle, MD, PhD, Yale University, New Haven, CT USA
* Steve Dewhurst, PhD, University of Rochester, USA
* Robert Gallo, MD, Institute for Human Virology, Baltimore, USA
* Claude Genain, MD, California Pacific Medical Center Research Institute,
  San Francisco, USA
* Ron Glaser, PhD, Ohio State University Medical Center, Columbus, Ohio, USA
* Andrew Goodman, MD, University of Rochester Medical Center, Rochester, USA
* Sudhir Gupta, MD, PhD, MACP, University of California Irvine, Irvine, USA
* Kazuhiro Kondo, MD, PhD, Jikei University School of Medicine, Tokyo, Japan
* Uwe Kuhl, MD, PhD, Charite-Univeristy Medicine Berlin, Germany
* Gerhard Krueger, MD, PhD, University of Texas, Houston Medical School, USA
* Janos Luka, PhD, Bioworld Consulting Laboratories, Maryland, USA
* Irmeli Lautenschlager, MD, PhD, Helsinki University, Central Hospital,
  Finland
* Per Ljungman, MD, PhD, Karolinska Institute, Sweden
* Mauro Malnati, MD, San Raffaele Scientific Institute, Milan, Italy
* Peter Medveczky, MD, University of South Florida College of Medicine, USA
* David Mock, MD, University of Rochester, USA
* Yasauki Mori, MD, PhD, National Institute of Biomedical Innovation, Osaka,
  Japan
* Gary Pearson, PhD, Georgetown Univ. (retired) USA
* Dan Peterson, MD, Sierra Internal Medicine, Incline Village, USA
* Nigel Pluck, MD, Roche Products, Ltd., Hertfordshire, UK
* Mark Prichard, PhD, University of Alabama School of Medicine, Birmingham,
  USA
* Marvin Reitz, PhD, Institute of Human Virology, Baltimore, USA
* Silvie Ranger-Rogez, MD, PhD, Faculte de Pharmacie, Limoges Cedex, France
* Shlomo Shinnar, MD, PhD, Albert Einstein College of Medicine, Bronx, NY,
  USA
* Marshall Williams, PhD, Ohio State University, Columbus, Ohio, USA
* Danielle Zerr, MD, MPH, Seattle Children's Hospital, Seattle, USA

Organizing Committee
* Dharam Ablashi, DVM, MS, Dip. Bact., HHV-6 Foundation, USA
* Courtney Hischier, HHV-6 Foundation, USA
* Steve Jacobson, PhD, National Institute of Neurological Disorders & Stroke,
  NIH, USA
* Kristin Loomis, HHV-6 Foundation, USA

--------
(c) 2008 HHV-6 Foundation