Wednesday, February 22, 2006
Gene expression in peripheral blood mononuclear cells from patients with chronic fatigue syndrome.
Dr J R Kerr
Department of Paediatric Infectious Diseases, Imperial College London, 2nd Floor, Medical School Building, Norfolk Place, London W2 1PG, UK; firstname.lastname@example.org
Background: Chronic fatigue syndrome (CFS) is a multisystem disease, the pathogenesis of which remains undetermined.
Aims: To test the hypothesis that there are reproducible abnormalities of gene expression in patients with CFS compared with normal healthy persons.
Methods: To gain further insight into the pathogenesis of this disease, gene expression was analysed in peripheral blood mononuclear cells from 25 patients with CFS diagnosed according to the Centers for Disease Control criteria and 25 normal blood donors matched for age, sex, and geographical location, using a single colour microarray representing 9522 human genes. After normalisation, average difference values for each gene were compared between test and control groups using a cutoff fold difference of expression 1.5 and a p value of 0.001. Genes showing differential expression were further analysed using Taqman real time polymerase chain reaction (PCR) in fresh samples.
Results: Analysis of microarray data revealed differential expression of 35 genes. Real time PCR confirmed differential expression in the same direction as array results for 16 of these genes, 15 of which were upregulated (ABCD4, PRKCL1, MRPL23, CD2BP2, GSN, NTE, POLR2G, PEX16, EIF2B4, EIF4G1, ANAPC11, PDCD2, KHSRP, BRMS1, and GABARAPL1) and one of which was downregulated (IL-10RA). This profile suggests T cell activation and perturbation of neuronal and mitochondrial function. Upregulation of neuropathy target esterase and eukaryotic translation initiation factor 4G1 may suggest links with organophosphate exposure and virus infection, respectively.
Conclusion: These results suggest that patients with CFS have reproducible alterations in gene regulation.
Posted at 22.2.06 by fnqsupport
Thursday, February 16, 2006
ME/CFS and Post-infective Fatigue
In 1988 the CDC with the problem post-EBV infection and similar conditions that were occurring with increasing frequency. The UK had already grouped these under Myalgic Encephalomyelitis but the CDC arrived at the "catch all" Chronic Fatigue Syndrome and pushed the EBV factor to the background.
Well it never stayed there, numerous studies have been conducted since 1988 on this member of the Herpes family. Below is perhaps the latest with a newer term " Post-Infective Fatigue " , is this not Post-Viral Chronic Fatigue Syndrome (G93.3)?
Preliminary evidence of mitochondrial dysfunction associated with post-infective fatigue after acute infection with Epstein Barr Virus
Suzanne D Vernon , Toni Whistler , Barbara Cameron , Ian B Hickie , William C Reeves and Andrew Lloyd
BMC Infectious Diseases 2006, 6:15 doi:10.1186/1471-2334-6-15
Published 31 January 2006
Acute infectious diseases are typically accompanied by non-specific symptoms including fever, malaise, irritability and somnolence that usually resolve on recovery. However, in some individuals these symptoms persist in what is commonly termed post-infective fatigue. The objective of this pilot study was to determine the gene expression correlates of post-infective fatigue following acute Epstein Barr virus (EBV) infection.
We followed 5 people with acute mononucleosis who developed post-infective fatigue of more than 6 months duration and 5 HLA-matched control subjects who recovered within 3 months. Subjects had peripheral blood mononuclear cell (PBMC) samples collected at varying time points including at diagnosis, then every 2 weeks for 3 months, then every 3 months for a year. Total RNA was extracted from the PBMC samples and hybridized to microarrays spotted with 3,800 oligonucleotides.
Those who developed post-infective fatigue had gene expression profiles indicative of an altered host response during acute mononucleosis compared to those who recovered uneventfully. Several genes including ISG20 (interferon stimulated gene), DNAJB2 (DnaJ [Hsp40] homolog and CD99), CDK8 (cyclin-dependent kinase 8), E2F2 (E2F transcription factor 2), CDK8 (cyclin-dependent kinase 8), and ACTN2 (actinin, alpha 2), known to be regulated during EBV infection, were differentially expressed in post-infective fatigue cases. Several of the differentially expressed genes affect mitochondrial functions including fatty acid metabolism and the cell cycle.
These preliminary data provide insights into alterations in gene transcripts associated with the varied clinical outcomes from acute infectious mononucleosis.
Chronic fatigue Syndrome
Posted at 16.2.06 by fnqsupport
Monday, February 06, 2006
CHRONIC FATIGUE SYNDROME / MYALGIC ENCEPHALOMYELITIS
Sorry, but my health or rather lack of (my ME) has prevented any updates for over 6 months. Over the next few weeks as i come up to sped with what is happening in the sorry world of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome, the posts shall return to this site, not that the net noticed my asbence.
Posted at 6.2.06 by fnqsupport
Friday, May 06, 2005
Myalgic Encephalomyelitis / CFS
For the Attention of all Members of Parliament: Old and New
Margaret Williams 4th May 2005
Tomorrow, on 5th May 2005,(Today, May 6 2005,) the results of the UK General Election will be known: this may lead to either the return or replacement of Members of Parliament, and Parliament will sit on 11th May solely for the swearing-in of new MPs. Whatever the outcome, as soon as Parliament resumes, as many as possible of the ME community are urged to contact their MP and to insist on their seeking and obtaining from the Minister of State for Health acceptable answers to a few straightforward questions:
- . Why are sufferers of myalgic encephalomyelitis (ME --- also known by the World Health Organisation as chronic fatigue syndrome or CFS) being offered only inappropriate and potentially damaging psychiatric interventions suitable for somatisation disorders when there is no evidence whatever that ME (as distinct from chronic "fatigue") is a psychiatric disorder?
- . If, contrary to abundant international scientific evidence, the Department of Health remains committed to its view that ME/ICD-CFS is a somatisation disorder, on what evidence does it rely to support its belief, and will it supply such evidence for Members of Parliament and their constituents?
- . Why do UK Government bodies continue to accept uncritically the dogma of Wessely School psychiatrists who claim that what they call "CFS/ME" is a functional somatic syndrome, when such psychiatrists have entirely failed to observe a mandatory requirement set out in the DSM-IV that must be observed before a diagnosis of somatisation can be made - namely, whether any toxic exposure has been noted? Unless the possibility of toxic exposure has been investigated as a differential diagnosis, a diagnosis of somatisation is invalid. (Grateful acknowledgment to Margaret Holt: see Co-Cure, 4th May 2005). On what grounds does the Department of Health permit psychiatrists of the Wessely School to dismiss and ignore this requirement and to remain unaccountable for misdiagnoses on a massive scale when it is now accepted in many other countries that these UK psychiatrists are wrong?
- . Will the Health Minister provide an urgent explanation setting out the rationale for the Department of Health's increasingly frequent but unjustified use of the term "myalgic encephalopathy", given (i) that no such term exists in the WHO International Classification of Diseases and (ii) the existence of the internationally-publicised Statement from Dr Bruce Carruthers from Canada, an eminent and experienced clinician on ME/ICD-CFS, which is unambiguous and from which the following extracts are provided: "The politics around this are horrendous. I would not favour any kind of name change, since 'itis' is well-established in the name ME, and there is no good reason for changing it, since 'opathy' would serve to further confuse everyone - perhaps that is one of the motives behind the suggestion"? (Grateful acknowledgement to Kevin Short of ME Support, Norfolk). Is it the case that the tactics of using a non-classified term ("myalgic encephalopathy") are simply an extension of the tactics already in use by the Department of Health for the deliberate purpose of creating obfuscation in order to avoid addressing the real issues?
- . Mindful of the fact that the Province of Ontario, Canada, has officially recognised and classified ME/ICD-CFS as a neurological disorder to which the Diagnostic Code 795 has been allocated, why has the UK Department of Health still failed to clarify its position on the classification and status of ME-ICD-CFS, given that on 11th February 2004 the Health Minister (Lord Warner) confirmed in writing that the Department of Health did accept that the WHO classified ME/ICD-CFS as a neurological disorder and that it was incorrect to claim a dual classification - one as neurological and another as psychiatric -- for the same disorder ("The Department accepts that it might have been clearer to say that chronic fatigue syndrome is annexed to the neurology chapter and fatigue states to the mental health chapter"), yet on 20th April 2004, in reply to a question from the Countess of Mar ("Whether, in the light of their clarification that myalgic encephalomyelitis / chronic fatigue syndrome is a neurological disease and not a psychiatric disorder, they will issue a press release to inform the general public and the media about the correct classification of the syndrome [HL2302]"), the same Health Minister (Lord Warner) provided a written answer in which he asserted: "The Department of Health did not say that myalgic encephalomyelitis / chronic fatigue syndrome is a neurological disease"?
Posted at 6.5.05 by fnqsupport
Wednesday, May 04, 2005
Myalgic encephalomyelitis / Chronic Fatigue Syndrome
ABC of adolescence
Fatigue and somatic symptoms
Russell Viner Deborah Christie, consultant clinical psychologist
Middlesex Adolescent Unit, University College London Hospitals NHS Foundation Trust, London.
A 'Rapid Response' to the above article in the British Medical Journal
Angela P. Kennedy,
Social Sciences Lecturer
Failure to consider the issue of differential diagnosis now inexcusable.
As a sadly frequent occurrence, we are faced here with yet another article where the neurological nature of Myalgic Encephalomyelitis/ICD-10 Chronic Fatigue Syndrome (WHO ICD-10) is ignored, in favour of a vaguely written psychiatric paradigm (Kennedy, 2005) in which a serious, sometimes severely disabling disease with specific signs and symptoms of Central Nervous System Dysfunction (Hyde, 1992, 2003) is subsumed under generalisations of “fatigue and other somatic symptoms“, in which (according to the author‘s beliefs but not supported by evidence) ‘de- conditioning’ and ’psycho-social factors’ are claimed as causes.
Simon Wessely may claim (according to Duprey, another RR contributor) that “it is simplistic to cast the medical care of humanity solely in psychosocial or biological paradigms“. But, as he has stated there is no such thing as ME, and has been critiqued for his own and colleague’s overemphasis on the psycho-social, at the expense of the biological, and for his prejudicial descriptions of ME/CFS sufferers (Hooper et al, 2004, Marshall and Williams, 1999, Kennedy, 2005), it would appear to be a case of ’practice what you preach’.
Proponents of the psychiatric paradigm- which, with the greatest of respect, Viner and Christie appear to be (unfortunately there is little evidence to suggest otherwise, and here their ‘bio-psychosocial approach’ lays far too much emphasis on the ‘psychosocial’, to the detriment of the biological, a frequent occurrence)- consistently fail to discuss the problem of the issue of ‘fatigue’ as applies to ME/CFS sufferers, thereby incorrectly presenting ‘fatigue’ as merely ‘tiredness’, despite the evidence that the word ‘fatigue’ is inadequate to describe the physical abnormalities (both signs and symptoms) that occur in ME/CFS. In the same context, they fail to acknowledge that ‘fatigue’ (which might mean tiredness, drowsiness, exhaustion, disturbed level of consciousness, weakness, paralysis, or feelings of malaise, depending on how certain illnesses are experienced or linguistically constructed by individuals) is present in MOST organic illnesses, acute and chronic. Indeed: “Fatigue is both a normal and a pathological feature of everyday life’ (Hyde 1992: 11).
Proponents of the psychiatric paradigm, in their literature, tend to associate ‘fatigue’ with a psychological state, ignoring the physiological reasons that may contribute to the bodily symptoms in ME/CFS, with the effect that these become generalised, and often trivialised, as ‘fatigue’. As Hyde also points out, to place such an emphasis on such a generalised, unspecific, indefinable and immeasurable term as ‘fatigue’, present in both healthy patients and those with both organic and psychological illness, the elimination of hundreds of other diseases are necessitated. This logistical flaw results in only the most limited investigation being encouraged for ME/CFS patients, and NOT in areas that might yield definitive results, such as certain brain scans (as discussed and referenced in Hyde et al, 1992, Marshall et al, 2001, Carruthers et al, 2003).
Particularly relevant to ME/CFS sufferers also is the problem also identified by Hyde (1992: 11-12):
‘…taking the fatigue as the flagship symptoms of a disease not only bestows the disease with a certain Rip Van Winkle humour, but removes the urgency of the fact that most ME/CFS symptoms are in effect CNS symptoms.’
In this context the ramifications of such serious, disabling symptoms as found in ME/CFS are both trivialised and ignored. The problem is compounded by the frequent tendency, by proponents of the psychiatric paradigm themselves and taken up uncritically by others, to use, incorrectly, the term ‘chronic fatigue’ instead of and interchangeably with ‘chronic fatigue syndrome’, even though both terms denote completely different diseases. Chronic Fatigue Syndrome is described in the WHO ICD- 10 as synonymous with (therefore merely another name for) the neurological disease ME, while chronic fatigue is assigned a different category of illness in the ICD-10 (Psychiatric). This incorrect practice of using the terms ‘chronic fatigue’ and ‘chronic fatigues syndrome’ interchangeably and confusingly has a direct relationship to various design flaws in research and the inadequate or dangerous treatment of and perjorative and prejudicial attitudes towards ME/CFS sufferers. Sadly, the Viner et al article is yet another example of this problem.
In this paper Viner and Christie claim that Randomised clinical trials in adults have shown that cognitive behaviour therapy and graded exercise programmes are helpful in most patients. This implies that ME/CFS sufferers are to be treated in such a way.
As the RCT’s themselves are very small in number, and most research in this area has been criticised for the high drop out rate of patient samples, and the patients excluded from such trials (Carruthers et al, 2003, Kennedy and Bryant, 2004). In promoting GET or GAT for ME/CFS, proponents of the psychiatric paradigm continue to ignore the documented harmful effects and therefore potential dangers of ‘Graded Exercise/’Activity’ for ME/CFS sufferers, for example as demonstrated in Van de Sande (2004) Carruthers et al (2003) 25% Group (2004) Shepherd (2001) Action for ME (2001), as well as the documented bio-medical evidence of, for example, specific cardiac problems in ME/CFS sufferers that provide explanations regarding the post-exertional malaise that leads to such risks (for example, Peckerman et al, 2003). In this context, the claims made by Viner and Christie are untenable. They are also potentially dangerous. At the very least this article should have included an acknowledgement of such risks, for doctors’ protection as practitioners as well as patients’ health.
Furthermore, proponents of the psychiatric paradigm of ME/CFS promote the use of Cognitive Behavioural Therapy, NOT as a strategy of coping with one’s illness, but as a ‘cure’ for ME/CFS, (which, it must be remembered, has been both classified and consistently demonstrated as a neurological illness) believing that the multi-system physiological abnormalities (manifesting as symptoms) can be improved to the point of ‘recovery’, merely by challenging the illness beliefs and behaviour of the sufferer (see for example, Sharpe,1996: 248, Stulemeijer et al, 2004). Their rationale for the use of CBT is as a ’cure’ for a neurological illness that they do not even recognise, an illogical position unheard of in regard to medical approaches to any other neurological or other organic illness.
Viner and Christie therefore appear to be promoting CBT/GET as treatments that will improve ME/CFS sufferers, without considering the evidence showing the major problems of such an approach.
In her Rapid Response, Duprey believes kudos is due to Viner and Christie for ‘spotlighting critical differences in the study of “chronic fatigue syndrome” versus the much broader category of “fatigue disorders” thus providing a forum for further clarification and progress‘. Sadly, there is little evidence of this at all in this article. The major problem with this article, and one which causes enormous risks to patients and serious problems to doctors looking for guidance to treat such patients, is the continued failure to delineate adequately the difference between ME/CFS and idiopathic chronic fatigue, ie, the failure to discuss the problem of differential diagnosis. As this issue is well represented in the literature, a peer review process should have identified this problem, and Viner and Christie themselves should not be ignoring the literature on this issue in the first place. Where was their acknowledgement of the Canadian ME/CFS Case Definition and Treatment protocols (Carruthers et al, 2003)? Where was their acknowledgement of the Jason et article showing how the Canadian Guidelines can improve the differential diagnosis of ME/CFS against other forms of ‘chronic fatigue’? At the very least one would have expected a nod to these important references in an overview article.
This continued lack of understanding of the neurological illness ME/CFS is fast becoming inexcusable among those claiming expertise in ‘chronic fatigue syndrome’, and represents a severe abrogation of duty to such patients. Both patients, and doctors seeking guidance on how to care for such patients, deserve better.
25% ME Group, 'Severely Affected ME (Myalgic Encephalomyelitis) Analysis Report on Questionnaire issued January 2004'‘ March 2004.
Action for ME, “Severely Neglected - M.E. in the UK” (2001).
Carruthers, B. et al (2003) “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols” Journal of Chronic Fatigue Syndrome, Vol. 11(1), pp 7 - 115.
Hooper, M. et al “The Mental Health Movement: Persecution of Patients?” (2004) Available on the One Click Website: http://www.theoneclickgroup.co.uk/documents/ME- CFS_docs/The%20Mental%20Health%20Movement%20- %20Persecution%20of%20Patients.pdf
Hyde, B. Bastien, S. Jain, A. The Clinical and Scientific Basis of ME/CFS (1992) Nightingale Research Foundation, Canada.
Hyde, B, Jain, A. ‘Clinical Observations of Central Nervous System Dysfunction in Post-Infectious, Acute Onset, ME/CFS’ in Hyde et al, 1992.
Hyde, B. ‘The Complexities of Diagnosis’ in Jason et al (2003) the Handbook of Chronic Fatigue Syndrome, Wiley and Sons, New Jersey.
Jason L.A. Torres-Harding S.R. Jurgens, A. Helgerson, J. "Comparing the Fukuda et al. Criteria and the Canadian Case Definition for Chronic Fatigue Syndrome". Journal of Chronic Fatigue Syndrome 12(1):37- 52, 2004.
(a) Kennedy A. ‘When Doctors say ‘psychosomatic‘, what do they mean?’ April 2004. Published in Quest (Newsletter of the National ME/FM Action Network) number 66, Fall 2004. Also available on the One Click Group Website (ME/CFS Documents) http://www.theoneclickgroup.co
Kennedy, A. (2004) A SHORT SUMMARY OF THE PSYCHIATRIC PARADIGM OF ME/CFS. Available on the One Click Group Website: http://www.theoneclickgroup.co.uk
Kennedy, A. Bryant, J. ‘A Summary of the Inherent Theoretical, Methodological and Ethical Flaws in the PACE Trial’ 21 October 2004. Available on the One Click Website Home page http://www.theoneclickgroup.co.uk
Marshall, E. Williams, M. ’Denigration by Design? A Review, with References, of the Role of Dr Simon Wessely in the Perception of Myalgic Encephalomyelitis, 1987 - 1996‘ September 1996, and Marshall, E. Williams, M. ‘Denigration by Design: 1999 Update’ 1999. Available at: http://www.btinternet.com/~severeme.group/introduction.htm
Peckerman A, LaManca JJ, Dahl KA, Chemitiganti R, Qureishi B, Natelson BH. "Abnormal impedance cardiography predicts symptom severity in chronic fatigue syndrome." The American Journal of the Medical Sciences: 2003:326:(2):55-60).
Arnold Peckerman, Rahul Chemitiganti, Caixia Zhao, Kristina Dahl, Benjamin H. Natelson, Lionel Zuckier, Nasrin Ghesani, Samuel Wang, Karen Quigley and S. Sultan Ahmed. "Left Ventricular Function in Chronic Fatigue Syndrome (CFS): Data From Nuclear Ventriculography Studiesof Response to Exercise and Postural Stress," Findings presented at the American Physiological Society conference, Experimental Biology 2003, April 11-15, 2003, San Diego Convention Center, San Diego, CA
Sharpe, M. C. in Demitrack, M.A. Abbey, S. E (eds.) Chronic Fatigue Syndrome (1996) Guildford Press, New York. Shepherd C. Pacing and exercise in chronic fatigue syndrome. Physiother 2001 Aug;87(8):395-396.
Stulemeijer, M. de Jong, L.W.A.M. Fiselier, T.J.W. Hoogveld, SW.B. Bleijenberg, G. 'Cognitive Behaviour Therapy for Adolescents with Chronic Fatigue syndrome: A Randomised Controlled Trial‘ BMJ.com (online) 7th December 2004.
Van De Sande, M. ‘ME/CFS Post-Exertional Malaise / Fatigue and Exercise’ Quest (Newsletter of the National ME/FM Action Network) #60, June/July, 2003. Also available on: http://www.mefmaction.net/default.aspx?Page=selectedarticlesmedical
Wessely , S. "Microbes, Mental Illness, the Media and ME: the Construction of Disease" Eliot Slater Memorial Lecture, 12 May 1994. Available with comment by Margaret Williams: http://www.meactionuk.org.uk/wessely_speech_120594.htm
Angela Kennedy The One Click Group www.theoneclickgroup.co.uk
Competing interests: Carer of young woman with ME/CFS; Social Sciences lecturer and researcher; Director of the One Click Group, a political pressure group advocacting for people with ME/CFS.
BCDC 3 May 2005
Posted at 4.5.05 by fnqsupport
Tuesday, May 03, 2005
Is it Myalgic Encephalomyelitis or Chronic Fatigue Syndrome
From: Margaret Williams 25th April 2005
It is noted that the Centres for Disease Control (CDC) Media Relations Office appears to have provided official confirmation that "CFS" (chronic fatigue syndrome) is not the same disorder as myalgic encephalomyelitis (ME) / ICD-classified chronic fatigue syndrome (CFS) --- "CFS" here being synonymous with "ME" as classified in the International Classification of Diseases at ICD-10 G93.3. This clarification has been reported via the US Newswire (see Co-Cure, 26th April 2005).
This confirmation would seem to be an important breakthrough in the confusion that surrounds the heterogeneous label "CFS".
The CDC release states unequivocally: "First identified in the 1980s, CFS is characterized by a severe and debilitating fatigue that does not improve with rest."
If the disorder "CFS" was "first identified in the 1980s" (as opposed to being a new name given by Holmes et al of the CDC to the existing disorder myalgic encephalomyelitis), then "CFS" cannot possibly be the same disorder as Ramsay-described ME, since the latter has been documented in the medical literature since at least 1938 and was identified 50 years before "CFS" and was recognised by The Royal Society of Medicine in 1978.
This means that, as has been pointed out many times in the last fifteen years, the term "CFS" means different things to different people, and that the term "CFS/ME" that was constructed by the psychiatric lobby does not equate with "ME", despite the two terms "ME" and "CFS" being synonymous in the ICD-10 that was published in 1992.
Is this confirmation by the CDC that "CFS" was first identified only in the 1980s a careless mistake, or is it the first step in overcoming the constructed confusion perpetrated by the psychiatric lobby that is intent on claiming all "fatigue states" as behavioural and on classifying "CFS" (into which it has assiduously subsumed ME) as a somatisation disorder in the next revision of the ICD?
If it is not a mistake by the CDC, then it means that the MRC PACE and FINE trials and the new UK Government-funded Centres cannot possibly be looking at Ramsay-described, ICD-classified ME (which in any event is automatically excluded by virtue of using the Oxford case definition as the entry criteria, despite denial by the MRC), therefore when they appear, the results of the PACE and FINE trials cannot credibly be taken to apply to those with ME even though the trial purports to be studying what it calls "CFS/ME".
Once the outcome of the UK General Election is determined, Members of Parliament are invited to take note and act accordingly in the best interests of their constituents with ME.
Posted at 3.5.05 by fnqsupport
Tuesday, April 26, 2005
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
Human Rights Around The World
Disability Rights Promotion International
Disability Rights Promotion International (DRPI) is a collaborative human rights project that aims to establish an international monitoring system to address disability
Monitoring activities will provide information on the human rights situation of the at least 600 million people around the world who have some form of disability. A human rights approach to disability emphasizes how societal structures and policies create barriers to the full participation and equality of people with disabilities. These barriers touch many aspects of life, such as access to education and employment as well as rights to vote,
marry and have a family, and to participate in culture and recreation. Social exclusion increases vulnerability to abuse, poverty and other forms of discrimination. Human rights laws prohibit discrimination and promote rights and freedoms that support the dignity of all human beings.
Until recently, disability was viewed as an individual or family problem, as a matter for "charity." However, the approach to disability is shifting to emphasize that people with disabilities are entitled to equal enjoyment of their human rights.
At the international level, the United Nations Commission on Human Rights has recently confirmed that inequality and discrimination related to disability are human rights violations and that governments are responsible for protecting and promoting the human rights of people with disabilities. Efforts are underway to create a new international human rights treaty specifically addressing the rights of people with disabilities.
Disability organizations from around the world are participating in the UN meetings to generate broad-based international support for a new treaty and to prepare a draft. (See
for more information on the process to develop a disability rights treaty.)
DRPI plans to build on this current transition to a human rights approach to disability. Monitoring the human rights situation of people with disabilities will provide information to promote greater awareness of disability discrimination, to inform advocacy for equal rights, and to assist governments in implementing inclusive laws and policies.
DRPI emerged from the recommendations of an international seminar on human rights and disability convened by Dr. Bengt Lindqvist, UN Special Rapporteur on Disability, in November, 2000 (see "Let the World Know: Report of a Seminar on Human Rights and Disability" at http://www.un.org/esa/socdev/enable/stockholmnov2000.htm
). Twenty-seven international experts in disability, law and human rights elaborated guidelines for capacity building and for disability rights monitoring in five areas: individual cases; legal cases; legislation; government programmes, services and practices; and media representations of people with disabilities.
With reference to international human rights standards, DRPI aims to monitor human rights violations in each of these five areas to document, for example, the experiences of individuals, the handling of legal cases in court systems, laws that protect or
limit equal rights, government programs and services that discriminate, and media practices that expose or fuel myths and stereotypes about people with disabilities.
To establish an international disability rights monitoring system, DRPI will work with national disability organizations and human rights groups to develop the infrastructure necessary for monitoring. In 2002, DRPI undertook background research to inform the implementation of a monitoring system. The research results, which will soon be published, identify opportunities for promoting disability rights within the international human rights system, effective human rights monitoring tools and methodologies, and useful training resources.
DRPI's continuing work will encourage partnerships and collaboration with disability organizations and with human rights organizations. The extensive knowledge of these many
organizations will inform training and monitoring activities. The current phase of the DRPI project will facilitate the development of disability rights monitoring tools and training materials. These resources will then be field tested in six to eight pilot monitoring
sites in different regions of the world. Monitors will interview people with disabilities and gather information about experiences of discrimination.
It is clear that the protection of the human rights of people with disabilities is an immediate and crucial concern of individuals, governments, organizations, the private sector and international bodies worldwide. Increasing the participation of people with
disabilities in their societies benefits everyone. This project aims to take a major step in that direction.
DRPI is an international project, based at York University in Toronto, Canada. The project is directed by Dr. Bengt Lindqvist, UN Special Rapporteur on Disability 1994-2002, and Dr. Marcia Rioux, Professor and Chair of the School of Health Policy at York University and Graduate Director of the Master of Arts (Critical Disability Studies). DRPI is also guided by an international advisory committee composed of leading experts in disability rights, human rights, legal advocacy and education, and other relevant areas.
Disability Rights Promotion International
York University, 214 York Lanes
4700 Keele St.
Toronto, ON M3J 1P3
Tel.: (416) 736-2100, ext. 20718
Website : http://www.yorku.ca/drpi
Posted at 26.4.05 by fnqsupport
Tuesday, March 01, 2005
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
Note: This does not just apply to Myalgic Encephalomyelitis / Chronic Fatigue Syndrome sufferers.
If you have any information to share on UNUM's Long Term Disability malfeasance, please consider sending the information, which will be held CONFIDENTIALLY, to Jim Mooney at: email@example.com
Explaination & instructions follow.
Please do forward this message to any other individuals or listserves whose members might have interest in participating.
EXTREMELY IMPORTANT ALERT!
A nationally influential law firm that has been very supportive of victims is going to present evidence of Unum's criminal malefaction to Elliot Spitzer.
They need a dozen or so representative cases to present.
If you want your case presented, send me your name, address, and phone number, along with a short and understandable synopsis of your case, to my email address at firstname.lastname@example.org
This is not a legal action, but a criminal presentation, so you cannot necessarily expect any remediation. Although if it succeeds it may be helpful to your case down the road.
If you have been gagged, this is exempt since a gag order cannot apply to criminal acts. Nor can a gag order made under duress be legal, if such a gag was forced out of you.
These cases should preferably be in the First or Second Circuit, comprising New York, New Jersey and New England, or nearby, since they are closer to Attorney General Spitzer's venue. However, the more evidentiary and supportive cases the better, even if in other districts, since Spitzer has been prosecuting criminal insurers on a nationwide basis. (Something our corrupt Federal govt. is trying to stop, so the sooner this is filed the better.)
If you want to do this, please put "Spitzer" in the title of your email so I can file it - then send it to my usual email address - email@example.com
Also, if you know of other Unum victims who want to get involved, or who may not be reading this newsletter, please have them do so. Even if you are not a Unum victim you may know those who are. I will cull through the cases I have received.
Also, please pass this announcement along to any relevant victim news or discussion groups. All contact information will be kept in strictest confidence and only go to this law firm. They will not go on the site or newsletter. Anyone who wants that will have to do it separately at some other time to avoid confusion. I won't be replying, but you can mark your email for reply confirmation so you know I got it. Please do not reply to this appeal or ask questions unless you are sending a case. It will be hard enough to sort through them as it is. I'll explain things in the newsletter at a later time.
Remember, we need name, address, phone number, and an understandable synopsis of your case. (It would help to include your email address in the body of the letter so I don't have to copy it in, since I will just send the body copy after collating them all.)
Email to firstname.lastname@example.org with "Spitzer" in the title. Please don't send non-case queries or discussions with that name in the title at this time. I only want case synopses and contact information.
Thanks. Let's get some action on this. I would like at least thirty or forty casesynopses from the two named circuits within a day or so, along with supportive cases from other circuits in the nation. I am in the middle of moving and will be shutting down here shortly so we need to get this done quickly. If you get a duplicate of this email or it doesn't seem relevant, I'm just going to run through a huge number of victim or related addresses I have in various places, so my apologies if this is sent in error ;').
Jim Mooney, webmaster
Posted at 1.3.05 by fnqsupport
Monday, February 21, 2005
CHRONIC FATIGUE SYNDROME LINKED TO HHV-6 VIRUS ==================================================================================
International Conference on Chronic Fatigue Points to Low-grade Viral Infections in Brain
February 22, 2005
The HHV-6 Foundation, an association formed to raise awareness, funding and further research for human herpesvirus 6 (HHV-6), has today announced that some cases of chronic fatigue syndrome (CFS) may be linked to human herpesvirus 6 A variant (HHV-6A). The announcement comes on the heels of the International Fatigue Conference on Fatigue Science that was held in Japan on February 9-11. The conference was attended by some 200 scientists from around the world.
Studies examining the role of the virus in CFS have had conflicting results over the years. The HHV-6 virus was discovered in the late 80's. Although the B variant is very common - over 95% of the population has had it - and causes roseola in infants, the A variant is less common. The A variant has been linked to CFS and multiple sclerosis (MS) and may hasten the progression of HIV. Dr. Ablashi reported that when the correct testing method is used, there is a strong association between HHV-6 and CFS.
Dr. Dharam Ablashi, co-discoverer of the virus and scientific director of the HHV-6 Foundation said, "There is good reason that it has taken a long time to build a case for this virus playing a role in chronic fatigue - it's very difficult to find. The virus is 'neurotropic' meaning it prefers to live in the brain tissue. It is quite possible to find a significant infection in the brain tissue, but no virus in the serum by DNA testing."
Dr. Daniel Peterson, a leading CFS clinician from Sierra Internal Medicine in Nevada, supported this finding. He performed spinal taps on patients with abnormal MRI or severe problems with cognitive functioning and found active HHV-6A virus in the spinal fluid of 20% of those patients. Twenty nine percent of these patients were positive at least once in the serum, and he found many patients who were positive in the spinal fluid but not the blood. Warned Peterson, "Just because you can't find it in the blood doesn't mean it isn't there."
Our primary objective at the moment is to get a test on the market that will be a sensitive indicator of active infection," said Kristin Loomis, executive director of HHV-6 Foundation. The evidence presented at the conference will go a long way toward dispelling the notion, still held by some physicians, that CFS is purely psychiatric."
There was a great deal of evidence presented at the conference in support of an infectious cause of CFS. Dr. Takeshi Sairenji of Tottori University showed evidence that 60% of CFS patients vs. 11% of controls had evidence of chronic activated antiviral pathways. He suggested that chronic fatigue might be caused by interferon from viral infections such as HHV-6, Epstein Barr virus and Borna virus.
Dr. Peterson has been treating some of his most severe cases with intravenous antiviral therapy and the majority has responded. He does not tell them they have CFS; he tells them they have HHV-6A subacute encephalopathy. Others have begun calling it the Peterson Syndrome.
Posted at 21.2.05 by fnqsupport
Saturday, February 19, 2005
Notes for UK Members of Parliament about ME/ICD-CFS
Notes for UK Members of Parliament about ME/ICD-CFS
13th February 2005
In the light of what might soon appear as a revision of the BBC website on ME by the ME Association, it may assist Members of Parliament to be reminded that, contrary to what may be claimed or implied in that revision, certain facts about myalgic encephalomyelitis (ME) remain irrefutable and readily verifiable:
1.. It is misleading to state that the controversy as to whether or not ME/CFS is a real disease or is "all in the mind" was effectively ended following the release of a Report on "CFS/ME" from the Chief Medical Officer in January 2002 which concluded that ME/CFS is a genuine and disabling condition without making it clear that:
(i) ME has been recognised by the UK Department of Health (then the Department of Health and Social Services) as a physical (organic, not psychosocial or psychiatric) disorder since November 1987 (see Hansard, 27th November 1987:353)
(ii) since March 1992 the then Disability Allowance Board recognised a physical cause for ME
(iii) since March 2000, the Social Security Ruling (SSR 99-2p), titles II and XVI (Fed Regist 1999 Apr 30; 64 (83)23380-4) determined that "in accordance with 20 CFR 402.35(b)(1), the Commissioner of Social Security gives notice of Social Security Ruling SSR 99-2p. This Ruling clarifies disability policy for the evaluation and adjudication of disability claims involving Chronic Fatigue Syndrome (CFS). This Ruling ensures that all adjudicators will use the same policies and procedures in evaluating disability claims involving CFS". This was reported in the Disability Rights Bulletin, Summer 2000, in the following terms: "In assessing Disability Living Allowance higher rate mobility component for people with ME, recent guidance advises decision makers to assume in the vast majority of cases that the claimant has a physical disablement. Guidance (DMG Memo Vol 10-3/00) advises that if a doctor says the claimant has ME or CFS then that can be taken as an opinion that they have a physical disablement".
2.. It is also misleading to state that CFS and ME are "now" classified by the World Health Organisation (WHO) as neurological disorders because ME has been so classified for the last 36 years: the WHO has classified ME as a neurological disorder since 1969
and the terms "chronic fatigue syndrome" (CFS) and "post-viral fatigue syndrome" (PVFS) are listed as synonymous, not as being in any way different. Indeed under the WHO rules, they could not be different: on 23rd January 2004 the WHO confirmed in writing that: "It is not permitted for the same condition to be classified to more than one rubric as this would mean that the individual categories and subcategories were no longer mutually exclusive".
3.. The information about prognosis in the revision of the BBC's website would seem to be attractive to the psychiatric lobby because the ME Association advises that obtaining an early diagnosis and "appropriate medical advice" are important factors in reducing prolonged and severe incapacity. There seems to be no clarification that the only "medical advice" obtainable within the NHS is related to financial inducement for doctors to enrol patients with ME/CFS and fibromyalgia in rehabilitation regimes of cognitive behavioural therapy and graded exercise which have been shown to be at best ineffective and at worst actively harmful
to those with ME as distinct from "chronic fatigue". Thus, the issue of what constitutes "appropriate medical advice" remains to be addressed.
4.. This revision of the BBC website may possibly be designed to relate to research being undertaken by psychiatrists and others of the so-called "Wessely School" (specifically to the current MRC PACE trials). This research is likely to be flawed from the start by the deliberate design of the study that was compiled by the psychiatrists involved. The Trial Identifier expressly states that the "Oxford" case definition will be used as entry criteria, but the Oxford criteria were published in 1991 by the same psychiatrists and expressly EXCLUDE those with any neurological disorder, yet the psychiatrists claim that ME will be
included because they do not accept the WHO classification of it as a neurological disorder. The reason that the psychiatrists want to use their own definition is explained by them in the Trial Identifier: "We chose these broad criteria in order to enhance recruitment". That is hardly good or accurate science. The reason the psychiatrists want to pull in as many people as possible might be because the outcome is seemingly a forgone conclusion, namely that such people are a hefty drain on NHS resources and so they must be "managed" by the currently favoured psychiatric intervention of cognitive behavioural therapy (defined in the
CMO's Report 2002 as "a tool for modifying attitudes and behaviour").
5.. There seems to be an undeclared competing interest here and the MRC trial results could be suspect because psychiatrist Professor Simon Wessely is named as a Corporate Officer in the PRISMA Company Information and is a member of the Supervisory Board (ie. he is higher than the Board of Management of PRISMA), which is a multi-national healthcare company working with insurance companies by arranging compulsory "rehabilitation" programmes (ie CBT and GET) for claimants with "medically unexplained symptoms". Wessley is described as a "world expert" in the field of such symptoms. His colleague, psychiatrist Mike Sharpe, is on record as confirming that PRISMA is now working with Action for ME to provide CBT programmes throughout the NHS (ref: "Functional Symptoms and Syndromes: Recent Developments" in the UNUMProvident Report 2002 "Trends in Health and Disability). Can it be that Wessely is recommending and promoting a management programme and trials of the same management programme that is known to be harmful for those with ME/ICD-CFS but is provided by a company of whose Supervisory Board he is a member?
6.. "Wessely School" adherents are not persuaded by the abundance of medical science that has already demonstrated an organic pathology for ME/ICD-CFS and they continue to assert that it is a "medically unexplained syndrome", known as MUS. They are trying to get a new category of MUS in the next edition of the WHO ICD (ICD-11). Importantly, the definition of MUS is already published: "Physical symptoms without organic basis will be referred to as 'medically unexplained or functional symptoms". These terms are used synonymously with somatization" (ref: Assessment and Treatment of Functional Disorders in General Practice: the Extended Reattribution and Management Model. Per Fink et al. Psychosomatics, March-April 2002:43:2:93-131).
7.. Control of funding for research into "CFS/ME" as the psychiatrists now refer to it (purely to placate patients, claiming that patients prefer the term "ME" but that doctors never use it---in fact, when asked by an interviewer in a magazine if CFS and ME were the same thing, the Medical Adviser to the ME Association, Dr Charles Shepherd, replied that yes, they were the same thing but that patients preferred the term ME because it sounded more serious) would seem to be in their own hands: Wessely was a member of three Boards at the MRC, including the Monitoring and Evaluating Steering Group which conducts evaluations of the
MRC's research funding policies; the Neurosciences and Mental Health Board and the Health Services and Public Health Research Board. In March 2003 the House of Commons Select Committee on Science and Technology produced its Report "The Work of The Medical Research Council" (HC 132) in which MPs issued a damning judgment on the MRC, lambasting it for wasting funds and for introducing misguided strategies for its research. MPs found evidence of poor planning and of focusing on "politically-driven" projects that have diverted money away from top-quality proposals. The unprecedented attack was the result of a detailed probe into the workings of the MRC.
8.. Despite the evidence to the contrary, the MRC regards "CFS/ME" as a psychiatric disorder: at a meeting with the Countess of Mar at the House of Lords in 2004, the MRC CEO (Professor Colin Blakemore, who was accompanied by Elizabeth Mitchell of the MRC) made it clear that the MRC is very happy with Wessely and his views. Earl (Freddie) Howe was also present and was very disturbed by the stance taken by Blakemore. This might explain why proposals submitted to the MRC for funding for biomedical projects on ME are always rejected (the usual excuse being that the quality of the proposal was not good enough).
9.. Wessely is on record as referring to ME as a "myth" (at the symposium on Occupational Health Issues for Employers" held on 17th May 1995 at the London Business School). At that Symposium, ME was described and promoted as (quote) "neurosis under a new banner" and described as a "malingerer's charter". Wessely is also on record as claiming that ME is nothing but a "belief": (quote) "I am going to talk not about an illness, but about an idea. I will argue that ME is simply a belief" (Microbes, Mental illness, the Media and ME: The Construction of Disease": Lecture at the Institute of Psychiatry, 12th May 1994).
10.. Wessely School psychiatrists base their paradigm on the construct of "CFS/ME" as possibly being initiated by a trigger, but maintained and perpetuated by "aberrant" and "dysfunctional" beliefs and by "avoidant" behaviour that must be "managed" by compulsory exercise and by substitution of such "dysfunctional" beliefs by their own beliefs. Wessely is on record as asserting that ME exists only because (naïve) doctors have not learnt to deal adequately with their "suggestible" patients (Old wine in new bottles: neurasthenia and 'ME': Psychological Medicine 1990:20:35-53). This was written in 1990, yet despite the wealth of published evidence of biological anomalies that has been discovered in ME/ICD-CFS since then, Wessely's views have hardly changed, as is apparent from his more recent papers.
11.. Much misinformation initially propagated by Wessely et al has been perpetrated (in writing) in letters sent to various people by Dr Stephen Ladyman MP, Parliamentary Under Secretary of State at the Department of Health. Given what is now known about the disorder, that is inexcusable (for example, see the letters dated 18th August 2003 and 2nd September 2003 sent by the Countess of Mar to Professor George Szmuckler, Dean of the Institute of Psychiatry where Wessely works ( http://www.meactionuk.org.uk/Mar_Szmukler_Correspondence.htm
. Clearly nothing changes in Dr Ladyman's mind, because his letter of 17th December 2004 to Annabelle Ewing MP fails to clarify that the WHO classification of ME/ICD-CFS is as a neurological disorder and his letter is disingenuous because the "strategy" and "initiatives" he mentions are simply psychiatric, which are completely misplaced as far as ME/ICD-CFS is concerned. Whilst to the uninformed, the letter seems to list much support for sufferers, in reality it merely replays the psychiatric paradigm. It does not address the crucial issue of ME at all, because the new Centres that Dr Ladyman extols will provide only psychiatric interventions for those with "unexplained fatigue" lasting longer than six months. This bears no relationship to the multi-system complex neuro-immuno-vascular disorder that is ME.
12.. Annabelle Ewing MP is entirely correct when she says in her letter of 9th December 2004 that "We will never move forwards with respect to ME unless we understand the causes of this debilitating illness", but it is now Government policy that it is not necessary to look for the cause (based on Wessely's advice because he believes it is a functional somatic syndrome and that it is neither appropriate nor necessary to carry out diagnostic investigations in search of the pathology of "CFS/ME"). He and his colleagues are on record as advising Government that (quote) "No investigations should be performed to confirm the diagnosis, which is a clinical one" (Joint Royal Colleges' Report, CR 54, October 1996), whilst the same view prevails in the more recent report to the Chief Medical Officer of January 2002 and the MRC also seems to believe this.
13.. In the light of the evidence available it is suggested that it is the duty of MPs to be asking some very probing questions.
Posted at 19.2.05 by fnqsupport