ICL/KCL XMRV study: Responses to Authors’ Response on PLoS

ICL/KCL McClure/Wessely XMRV study: Responses to Authors’ Response on PLoS One

Shortlink: http://wp.me/p5foE-2Hq

Related material:

Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome

Abstract and links for full paper: http://wp.me/p5foE-2Bd
Media coverage Round up 1: http://wp.me/p5foE-2Bj
Patient organisation responses Round up 2: http://wp.me/p5foE-2BA

Imperial College London News Release PDF: Imperial College London News Release XMRV

Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome

Otto Erlwein¹, Steve Kaye¹, Myra O. McClure¹*, Jonathan Weber¹, Gillian Wills¹, David Collier², Simon Wessely³, Anthony Cleare³

1 Jefferiss Research Trust Laboratories, Section of Infectious Diseases, Wright-Fleming Institute, Faculty of Medicine, Imperial College London, St Mary’s Campus, Norfolk Place, London, United Kingdom, 2 Social Genetic and Developmental Psychiatry Centre, Institute of Psychiatry (King’s College London) De Crespigny Park, Denmark Hill, London, United Kingdom, 3 Department of Psychological Medicine, Institute of Psychiatry, King’s College London, Camberwell, London, United Kingdom

The website of PLoS One, online publishers of the Imperial College London study “Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome” (5 January 2010), maintains a Comments Section here

In response to criticism around subject selection procedures and methodology, study authors from the Institute of Psychiatry, King’s College London, have published the following response:

Original Article
Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome

Authors Response
Posted by Anthony_Cleare on 12 Jan 2010 at 19:55 GMT  

on behalf of

Professor Simon Wessely, Professor of Psychological Medicine
Professor David Collier, Professor of Psychiatric Genetics
Dr Anthony Cleare, Reader in Neuroendocrinology

On 13 January, a version of the commentary below was published on the PLoS One site in response to Wessely, Collier and Cleare, by sociologist, Angela Kennedy:

Angela Kennedy

The authors’ reply to the concerns about patients selection for research for this paper raises more problems in addition to those of the original paper. My comments here should be read in addition to other problems raised by authors on this forum.

Firstly, the authors express some resentment towards those who have legitimately questioned this research cohort and the criteria over the years, which is rather surprising. Contrary to insinuation by the authors, no person on the PloSOne Responses Forum has insinuated that the research cohort they use are somehow ‘ess deserving’ than say, the WPI cohort, purely that they are a different type of patient, using different criteria that select a different population, and that this may cause problems with the findings, and claims made based on those findings, with regard to the British ‘CFS’ population.

This is a reasonable concern to express, and such a deduction can be made based on the evidence the authors provide themselves in their paper, citations, and their response. For example, their paper states:

“Patients in our CFS cohort had undergone medical screening to exclude detectable organic illness.”

In the authors’ response here, they also write:

“Thus patients in our service have also co-operated in studies of PET and fMRI neuroimaging, autonomic dysfunction, neurochemistry, respiratory function, vitamin status, anti nuclear antibodies, immune function, neuroendocrine function and genetics “

While patients being processed for a research cohort may well, indeed are likely, to have co-operated and had such tests done, this does not necessarily mean that patients with positive results are part of the research cohort.

Indeed, positive results, which would indicate organic abnormality, would surely be likely to prevent a patient being selected for a cohort, by the very logic described in the author’s paper here, by their own response (the additional tests are considered ‘not clinically necessary’?) and in at least one of their citations (Quarmby et al)?

In the Quarmby et al paper, the cohort is described, in which the criteria used (in addition to ‘Fukuda/CDC’) is ‘Oxford’. The Oxford criteria (Sharpe et al 1991), in particular, actually do allow for patients who fulfil organic abnormality to be selected out of a research cohort. Indeed, Anthony David, referring to these, commented at the time:

“British Investigators have put forward an alternative, less strict, operational definition which is essentially chronic (6 months or more) severe disabling fatigue in the absence of neurological signs with myalgia, psychiatric symptoms and previous viral infections as common associated features.”

Here, special attention needs to be paid to the term ‘previous viral infections’ and ‘absence of neurological signs’, in order to contextualise the cohort selection process applied using the Oxford Criteria.

It is therefore quite reasonable to presume that patients in the cohort described in the Erlwein et al paper are less likely to be suffering from organic abnormalities associated with ‘CFS’ populations than in other research cohorts.

It is also rational to be concerned that the cohort described here may not be representative of many people diagnosed with ‘CFS’ in Britain.

NICE guidelines for example, acknowledge that very little research has been done on ‘severely affected’ patients, who comprise, possibly, at least 25% of the population of people given a ‘CFS’ diagnosis (though so little research has been done on ‘severely affected’ in Britain, the true number is not yet clear).

While patients potentially destined for a research cohort which weeds out ‘detectable organic abnormality’ may be subjected to a rigorous amount of investigations, those not undergoing this process do not undergo such testing – at least not in the NHS. Indeed, such investigations of clinical patients are severely proscribed in the majority of ‘guidelines’: NICE, and the RCPCH guidelines as just two examples.

Ironically, Fukuda guidelines also make the following comment:

“The use of tests to diagnose the chronic fatigue syndrome should be done only in the setting of protocol-based research.

“In clinical practice, no additional tests, including laboratory tests and neuro-imaging studies, can be recommended. Examples of specific tests (which should not be done) include serologic tests for enteroviruses; tests of immunologic function, and imaging studies, including magnetic resonance imaging scans and radionuclide scans (such as single photon emission computed tomography (SPECT) and positron emission tomography (PET) of the head.

“We consider a mental status examination to be the minimal acceptable level of assessment.” (1994)

That clinical populations are not to be afforded the types of investigations given to research populations makes the whole idea of ‘medically unexplained’ or ‘unexplained by disease’, or ‘functional’ (as synonymous with ‘non-organic’ or not discernibly ‘organic’) as common characterisations of CFS (including by at least one of the authors themselves in previous publications –  for just one example, Page et al, 2003), highly problematic at best.

It is also significant that ‘CFS’ is so often described as a ‘diagnosis of exclusion’ (see, for example, the Centre for Disease Control CFS information website.

(Footnote: http://www.cdc.gov/cfs/cfsdiagnosis.htm )

Certain research case definitions comply with this assumption, such as the Oxford Criteria (Sharpe et al, 1991) and CDC Criteria (Fukuda et al, 1994). Here, ‘diagnosis of exclusion’ also functions as a euphemism of ‘medically unexplained’. The key problem within this recurring theme in the literature, which most frequently remains un-addressed, is how a clinical patient’s condition can all too easily become ‘medically unexplained’ because of the practice of encouraging doctors to severely limit investigations in the first place: except, it would appear, ironically, in research populations in which ‘organic’ illness is being weeded out to provide the type of cohort that might fulfil ‘not organically ill’ definitions.

The issue of ‘disability’ also needs to be clarified. The references cited in the Erlwein paper to support the statement that the patient cohort was of ‘high levels of disability’ refer only to ‘disability’ in psycho-social terms or feelings of ‘fatigue’, and not in terms of physical impairment, a key omission.

Mundt et al’s paper, in particular, focuses on specific mental health problems and the social exclusionary effects of living with these. While in no way invalidating or trivialising the disability caused by mental health problems, it must be pointed out that both Mundt et al and Chalder Scales nevertheless fail to elucidate a high level of physical or physiological (say, for example, neurological, mitochondrial and/or cardiovascular) impairment – key problems present in people given a clinical diagnosis of ‘CFS’, usually related to specific organic abnormalities that can be found, if they are tested for in the first place.

With regard to the Canadian criteria (Carruthers et al), in fact they have undergone some ‘validation’. Jason et al found:

“…Canadian criteria selecting cases with less psychiatric co-morbidity, more physical functional impairment, and more fatigue/weakness, neuropsychiatric, and neurologic symptoms. The overall findings suggest that the Canadian clinical criteria appear to select a more symptomatic group of individuals than the CFS criteria, and these individuals do demonstrate less current and lifetime psychiatric impairment than those selected according to the CFS criteria. In contrast, the CFS group was not significantly different from the Chronic fatigue-psychiatric group in psychiatric impairment.

“Predictably, the Chronic fatigue-psychiatric group evidenced the highest frequency of current and lifetime psychiatric disorders… Overall, there were 17 significant symptom differences between the Canadian and Chronic fatigue-psychiatric group, but only 7 significant symptom differences between the CFS and Chronic fatigue-psychiatric group. Findings suggest that the Canadian criteria select a group of patients with more symptoms, and the Canadian criteria identify a group with higher levels of physical functional impairment and less psychiatric comorbidity.

“Findings from the present study indicate that the Canadian criteria does capture many of these cardiopulmonary and neurological abnormalities, which are not currently assessed by the current CFS case definition (Fukuda et al., 1994).

“However, it is worth noting that when the Fukuda et al. (1994) CFS case definition was conceived, the research had not yet been done investigating these abnormalities. In combination with symptom patterns, it is possible to conclude that the Canadian group does select individuals with greater impairment, particularly given the physical composite score, fatigue/weakness, neurologic and neuropsychiatric symptoms, as these symptoms can interfere with daily living and occupational performance. Results from this present investigation highlight the importance of contrasting different diagnostic criteria in order to gain a greater understanding of the syndrome now known as CFS. The findings do suggest that the Canadian criteria point to the potential utility in designating post-exertional malaise and fatigue, sleep dysfunction, pain, clinical neurocognitive, and clinical autonomic/ neuroimmunoendocrine symptoms as major criteria for future attempts to define this syndrome…”  (Comparing Definitions )

In addition to using the Carruthers et al criteria (or ‘Canadian Criteria’), the WPI give this information about their patient cohort in their supporting online material:

“Their diagnosis of CFS is based upon prolonged disabling fatigue and the presence of cognitive deficits and reproducible immunological abnormalities. These included but were not limited to peturbations of the 2-5A synthetase/RNase L antiviral pathway, low natural killer cell cytotoxicity (as measured by standard diagnostic assyas) and elevated cytokines particularly interleukin-6 and interleukin-8. In addition to these immunological abnormalities, the patients characteristically demonstrated impaired exercise performance with extremely low VO2 max measured on stress testing…”

(http://www.sciencemag.org/cgi/content/full/117905/DC1 )

It is therefore highly unlikely, as the authors indeed acknowledge in their reply here, that Erlwein et al were testing the same type of patient as those tested by the WPI, which inevitably makes the Erlwein et al findings – and perhaps some of the wilder claims that they have ‘cast serious doubt’ on the WPI’s findings, unfortunately made in some of the lay media – not scientifically tenable. The failure of Erlwein et al to include such type of patient in their cohort, does not mean that such patients do not exist in Britain. Copious patient anecdotal experience, research reports, and charity surveys indicate that they do exist. Whether XMRV is present or not is another matter, but there are enough identifiable problems around patient selection alone with the Erlwein et al paper to indicate this is not a definitive disproving of the existence of the virus in Britain.

Ongoing neglect of the importance of establishing a possible ‘CFS’ patient population in Britain, clinically and in research settings, using the Canadian Guidelines, is preventing the development of knowledge that might help extremely ill and disabled people here in Britain.

The problems I have briefly outlined here do not fully express the range and depths of problems with regard to: the identity of an accurate ‘CFS’ population; the instabilities of ‘CFS’ criteria per se; the faulty concepts of ‘medically unexplained’ or ‘functional’ and relation to ‘psychogenic’ explanations for somatic illness; the vagaries of criteria that claim to facilitate a ‘diagnosis of exclusion’; and the psychogenic dismissal of serious organic dysfunction of patients given a ‘CFS’ diagnosis, problems that have happened for many years. These problems are relevant to the Erlwein et al paper. Furthermore, they are highly relevant to all research that claim a psychological and/or behavioural aetiology to the condition or conditions that get deemed as ‘CFS’.

REFERENCES

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.

Chalder, T. Berelowitz, G. Pawlikowska, T. Watts, L. Wessely, S. Wright, D. Wallace, E. P.:Development of a fatigue scale. Journal of Psychosomatic Research Vol 37: Issue 2: Feb 1993: 147-153.

David, A.S.:Postviral syndrome and psychiatry.  British Medical Bulletin: 1991: 47: 4: 966-988.

Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A.:The chronic fatigue syndrome: a comprehensive approach to its definition and study. Ann Intern Med. 1994 Dec 15;121(12):953-9.

Jason LA, Torres-Harding SR, 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.

Mundt, J.C. Marks, I.MShear, K. Griest, J.H.:The work and social adjustment scale: a simple measurement of impairment in functioning. British Journal of Psychiatry (2002) 180: 461-443.

Page, L.A. Wessely, S.:Medically unexplained symptoms: exacerbating factors in the doctor–patient encounter. J R Soc Med 2003;96:223-227.

Sharpe MC, Archard LC, Banatvala JE, Borysiewicz LK, Clare AW, David A, Edwards RH, Hawton KE, Lambert HP, Lane RJ, et al: Chronic fatigue syndrome: guidelines for research. J R Soc Med. 1991 Feb;84(2):118-21.

Competing interests declared: Social scientist critically evaluating ‘psychogenic’ explanations for somatic illnesses. Parent of adult who given a ‘CFS’ diagnosis as a child.

Times: ME coverage 30 January 10

Media coverage 30 January 10

Shortlink: http://wp.me/p5foE-2Hh

Update @ 31 January

News of the World  |  Carole Malone  |  31 January 2010

Mother’s courage betrayed by law

BBC News: Poll ‘support for mercy killings’: http://news.bbc.co.uk/1/hi/uk/8489744.stm

There will be a ‘Panorama’ special on the Kay Gilderdale case tomorrow, Monday, 1 February.

Panorama

 

http://www.bbc.co.uk/programmes/b00qs930

I Helped My Daughter Die

Broadcasts

BBC One  |  Monday, 1 Feb 2010  20:30

Next on:  |  BBC News Channel  |  Thursday 4 Feb 2010  04:30

Synopsis

What drives a mother to help her child die? For almost a year, Panorama cameras have been following Kay Gilderdale – the woman at the centre of the recent Assisted Suicide trial – as she faced a possible life sentence over her part in the death of her daughter Lynn.

She talks exclusively to Jeremy Vine about the night she helped her bedridden daughter kill herself and explores whether the law should be changed with those on both sides of the debate, including Debbie Purdey and Baroness Campbell.

Update @ 31 January

Daily Mail  |  Anne Atkins  |  31 January 2010

ANNE ATKINS: I know the curse of ME well but I’m sorry, it was wrong to let Lynn die

Times  |  Dr Martyn Lobley: Commentary  |  30 January 2010

‘ME is a diagnosis only reached by excluding other possibilities’

Dr Martyn Lobley is a GP in southeast London

Postings on ME agenda site for media coverage of the death of Lynn Gilderdale and the legal case are identified by the Freefoto.com image above and archived in Categories under Gilderdale case. ME agenda is unable to respond to enquiries in connection with the case from members of the public or the media.

Times |  Steve Bird  |  3o January 2010

They told dying daughter she was lying, says ME mother Criona Wilson

As Criona Wilson knelt beside her dying daughter’s bedside, she promised her that her death would not be in vain. Before the frail body of 32-year-old Sophia finally succumbed to the medical complications and ravages of ME, she replied in a whisper: “Then it’s all worth it.”

In the years that followed, Mrs Wilson, 66, a former midwife, dedicated her life to proving that her daughter’s condition was not a figment of imagination, nor one that merited her youngest child’s incarceration in a mental hospital.

Her battle saw her take on the medical profession and accepted thinking about the diagnosis and treatment of ME, also known as chronic fatigue syndrome. Eventually, in 2006, a coroner ruled that Sophia’s death was the result of myalgic encephalomyelitis — the first such ruling at an English inquest.

The fierce debate over ME has been highlighted once again by the case of Kay Gilderdale, who admitted assisting her daughter, Lynn, to kill herself after suffering from ME for 17 years. When she walked free from Lewes Crown Court on Monday, having been cleared of murder, Mrs Wilson was among those cheering her from the public gallery.

Related Links
No blood test to diagnose if a patient has ME
DPP defends murder charge against ME mother

“I had to be there,” said Mrs Wilson yesterday. “It was such an important case. And the verdict was a vote for common sense in a trial that highlighted what people suffering ME and their carers have to face.”

Her daughter, Sophia Mirza, was a talented and popular arts graduate living with her mother in Brighton in 1999 when she contracted ME at the age of 25. She became confined to her bedroom and, just as Miss Gilderdale had, needed round-the-clock care.

In 2003 she was visited by a psychiatrist, even though Miss Mirza complained only of physical discomfort. The psychiatrist told her that she was making up her symptoms and if she continued to pretend to be ill he would section her under the Mental Health Act. Mrs Wilson said: “I knew my daughter. There was no way she was mentally ill or pretending.”

When the dread knock on her door finally came in 2003, there was little she could do. A policeman forced the door open and the psychiatrist and a social worker locked themselves into Miss Mirza’s room to prepare her for her trip to a psychiatric ward.

Her condition took a dramatic turn for the worse. After 13 days she was released and taken back to the care of her mother. “That spell in a mental hospital set her back terribly. We lost all faith in medical professionals. We were alone,” said Mrs Wilson.

In 2005 Miss Mirza could barely muster the energy to speak, eat or drink. She and her mother had already agreed that no doctors should be called in case she would be sectioned again. On November 25, 2005, Miss Mirza died in her bed at home.

Wiping tears from her eyes, Mrs Wilson said: “We did everything we could.” Determined to get to the bottom of why her daughter’s treatment had been so bad, she got hold of her medical records. After being contacted by the 25 Per Cent ME Group, which campaigns for those with the most acute form of ME, she agreed to her daughter’s body being examined.

At the inquest the next year a neuropathologist told the court that Miss Mirza’s spinal cord was inflamed and three quarters of her sensory cells had abnormalities. It was, the court heard, a clear physical manifestation of ME. The coroner ruled that she had died from “acute renal failures as a result of chronic fatigue syndrome”.

A year later, the National Institute of Clinical Excellence (NICE) issued its first guidelines on the diagnosis and treatment of the illness, describing it as “relatively common”, affecting up to 193,000 people in Britain. At the heart of that guidance is the need to take into account the opinions of the patients.Mrs Wilson is campaigning to get the Government to fund research into ME. “It’s not over yet.”

Dr William Reeves, head of CDC CFS Research Program to take up new position

Dr William C Reeves, head of the CDC CFS Research Program to take up new position

Shortlink: http://wp.me/p5foE-2Hx

Facebook  |  29 January 2010

Change of leadership announced for CDC’s CFS Research Program

The U.S. Centers for Disease Control and Prevention (CDC) has announced that Dr. William C. Reeves, head of the agency’s CFS Research Program, will be taking a new position within the agency effective Feb. 14, 2010 and that he will no longer lead the agency’s CFS research. Dr. Elizabeth Unger will serve as acting chief of the Chronic Viral Diseases Branch, the unit within CDC that houses the CFS Research Program. On Feb. 14, Dr. Reeves will begin an assignment as Senior Advisor for Mental Health Surveillance in the Public Health Surveillance Program Office within the CDC’s Office of Surveillance, Epidemiology, and Laboratory Services.

The CFIDS Association of America, other organizations and advocates have vocally supported new program leadership to effect a more robust research effort at CDC. This staffing change has the potential to significantly advance CFS research beyond the agency’s intramural program and to seize scientific momentum generated by recent discoveries. We are fully dedicated to making rapid progress in this new era of collaboration and discovery in CFS research.

K. Kimberly McCleary
President & CEO
The CFIDS Association of America

Comment from Mary Schweitzer via Co-Cure mailing list

I have never met Elizabeth Unger, and until her appoinment as the new head of the CDC’s program on CFS, I was familiar with her name only in relation to the CDC’s genome project on CFS.

However, I think it worth pointing out that Dr. Elizabeth Unger has mainly worked as a virologist, specializing in HPV (Human Papilloma virus).

The HPV program has been one of the few real success stories at CDC since AIDS. A generation ago, nobody knew about this virus – but once it was discovered, followed by the realization of its role in causing uterine and other cancers, the CDC did a very good job getting information out to young women. Ultimately, the goal was to develop a vaccine.

The distribution of the HPV vaccine has been controversial, but that should not concern us.

I think it will be great to have a virologist who has experience working with a disease about which little is known heading the CDC’s program. I am looking forward to seeing what Dr. Unger can accomplish.

Mary Schweitzer

As reported by Kelly, via Co-Cure mailing list

Bio of Dr. Elizabeth R. Unger

Like Dr. Suzanne Vernon now with the CFIDS Association, Dr. Elizabeth (Beth) R. Unger PhD, MD was originally doing research for the CDC in Human Papillomavirus Program which was under Dr. William C. Reeves.

A native of Pennsylvania, Dr. Elizabeth R. Unger received her bachelor’s degree in chemistry from Lebanon Valley College (Annville, PA). She received her doctorate in experimental pathology and medical degree from The University of Chicago. After completing her residency in anatomic pathology at The University of Chicago and The Milton S. Hershey Medical Center, Pennsylvania State University, she was certified by the American Board of Pathology in Anatomic Pathology.

She was a post-doctoral research fellow of the American Cancer Society and The W.W. Smith Charitable Trust in the pathology department of The M.S. Hershey Medical Center and joined the faculty of the Emory University School of Medicine as an academic surgical pathologist in 1990. While there she was involved in several studies associating EBV with various cancers.

She accepted a position at the Centers for Disease Control and Prevention in 1994 and became the Team Leader of the Human Papillomavirus (HPV) Program in the Viral Exanthems and Herpesvirus Branch of the Division of Viral and Rickettsial Diseases, National Center for Infectious Diseases.

Dr. Unger’s research interests have been in molecular diagnostics, viral oncogenesis and molecular epidemiology and she pioneered colorimetric in situ hybridization methods for detection of HPV in diagnostic samples. The HPV program utilizes a multidisciplinary team to conduct laboratory-based epidemiologic research to inform control strategies to reduce the incidence of new HPV infections as well as the major HPV-associated chronic diseases such as cervical cancer and recurrent respiratory papillomatosis. They worked with the National Cancer Institute’s Early Detection Research Network to discover and validate novel molecular markers to improve cervical cancer screening.

In 2000, she first appeared as an author on a CFS study. Chronic fatigue syndrome is not associated with expression of endogenous retroviral p15E. Gelman IH, Unger ER, Mawle AC, Nisenbaum R, Reeves WC.Mol Diagn. 2000 Jun;5(2):155-6.

Dr. Unger is a member of the College of American Pathologist’s Committee on Molecular Pathology and a founding member of the Association for Molecular Pathology. She is on the Council of the American Society for Investigative Pathology and The Histochemical Society as well as a principle scientist with the American Society of Microbiology. She has served as an advisor to the FDA and WHO on HPV testing and vaccine issues. She is on the editorial board of four journals including Technology in Cancer Research and Treatment.

Centers for Disease Control and Prevention 1600 Clifton Rd Mail Stop G41, NE
Atlanta, GA 30333.
Div. of Viral and Rickettsial Diseases
E: eru0@cdc.gov

Update at 1 February:

Kelly notes via correction on Co-Cure (31.01.10)

Dr. Unger actually began work at Emory University in 1986 and for 11 years, where she was an assistant, then associate, professor in the department of pathology and laboratory medicine at Emory University. In 1997, she joined the CDC’s staff as section chief, molecular pathology laboratory in the Viral Exanthems and Herpesvirus Branch within the National Center for Infectious Diseases.

Thread here on Cort Johnson’s Bulletin Boards:
Dr. Reeves Removed from the CDC’s CFS Research Program

Also write-up here:
Dr. Reeves Removed from the CDC’s CFS Research Program

Kay (Kathleen) Gilderdale ME case on Panorama: 1 February

Postings on ME agenda site for media coverage of the death of Lynn Gilderdale and the legal case are identified by the Freefoto.com image above and archived in Categories under Gilderdale case. ME agenda is unable to respond to enquiries in connection with the case from members of the public or the media.

Bridget Kathleen (Kay) Gilderdale, mother of ME sufferer, Lynn, on Panorama Monday, 1 February

Shortlink:   http://wp.me/p5foE-2GO         Gilderdale case archive on ME agenda

Update @ 29 January

Brighton News The Argus  |  28 January 2010

Kay Gilderdale: I don’t regret a thing

Daily Mail  |  Martin Samuel  |  28 January 2010

Lynn’s lasting legacy for the victims of ME

You may suspect personal experience here, and you would be right. My wife, Deborah, has ME.

Update @ 28 January

Guardian  |  Deborah Orr  |  28 January 2010

You can’t make meaningful laws for assisted suicide
We need compassion and common sense to deal effectively with such a distressing but important issue

Dail Mail   |  Gill Swain  |  28 January 2010

‘How can they say I murdered Lynn when I just loved her so much?’ Mother cleared of murdering her ME-stricken daughter speaks out

Independent   |  27 January 2010

ME case study: ‘She told me that she did not want to carry on’

The mother of an ME sufferer tells Cahal Milmo how the condition debilitated her daughter

Panorama

 

There will be a ‘Panorama’ special on the Kay Gilderdale case next Monday, 1 February.

http://www.bbc.co.uk/programmes/b00qs930

I Helped My Daughter Die

Broadcasts

BBC One  |  Monday, 1 Feb 2010  20:30

Next on:  |  BBC News Channel  |  Thursday 4 Feb 2010  04:30

Synopsis

What drives a mother to help her child die? For almost a year, Panorama cameras have been following Kay Gilderdale – the woman at the centre of the recent Assisted Suicide trial – as she faced a possible life sentence over her part in the death of her daughter Lynn.

She talks exclusively to Jeremy Vine about the night she helped her bedridden daughter kill herself and explores whether the law should be changed with those on both sides of the debate, including Debbie Purdey and Baroness Campbell.

Credits

Presenter | Jeremy Vine

Producer | Ray Tostevin

Producer | Margaret Vrublevskis

Telegraph | Blogs | Andrew M Brown

Andrew M Brown is a writer specialising in the influence of addiction and substance abuse on culture and celebrities.

Lynn Gilderdale’s distressing diary shows that Chronic Fatigue Syndrome/ME can be real and catastrophic

(There is a comment facility)

Times  |  Letters to the Editor  |  27 January 2101

Sir, The tragic case of Lynn Gilderdale (“I really, really want to die. I’ve had enough of being in so much pain”, Jan 26) starkly exposes the dreadful situation that ME patients face in this country, especially for those severely affected. Having to cope constantly with a horrible physical illness and its unpleasant symptoms, day after day with no respite, leads to despair.

We are derided by the medical profession and the public, and made to feel like we are charlatans, work-shy malingerers who undeservedly claim paltry benefits that are barely adequate to survive on. This, too, leads to despair.

It is hardly surprising that so many ME patients have already taken their own lives in a country and world that does not care.

ME is real. It is a devastating illness that completely destroys lives. It deserves the same respect and care as any other serious illness, not derision and disrespect.

Keith Riley

Seaford, E Sussex

 

Sir, I hope there is a broader cross-section of opinion within the Medical Research Council’s expert group on myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) than that expressed by its chairman, Professor Stephen Holgate (“Doctors, school, friends thought I was faking it”, times2, Jan 25). To say that he recognises “there’s a real thing here, it’s not all psychiatric or psychological” betrays a lack of understanding of psychological illness that ill serves any practising clinician, let alone one involved in research into ME/CFS. The modern, holistic approach in medical science might almost have been developed with this most puzzling and complex condition in view.

As a former consultant psychiatrist, I had hoped that this dichotomous thinking regarding diseases of the body and diseases of the mind was confined to earlier generations of doctors. Apparently I was mistaken. Perhaps Professor Holgate would like to tell patients struggling to live with bipolar affective disorder or with schizophrenia that their illnesses are not “real”. I think he would be unwise to do so.

Dr Richard Hawley

Bristol

Telegraph  |  Tracy Corrigan  |  27 January 2010 

Compared with Lynn Gilderdale, my daughter was lucky

The story of the Gilderdales has awakened painful memories for Tracy Corrigan.

Dr Macintyre and the Gilderdale family discuss ME

Gilderdale case archive on ME agenda

Gilderdale ME legal case: Media coverage 26 January

Gilderdale ME legal case: Media coverage 26 January

Shortlink: http://wp.me/p5foE-2Gz

It is understood that the case will feature in Panorama on Monday 01 February 2010.

Postings on ME agenda site for media coverage of the death of Lynn Gilderdale and the legal case are identified by the Freefoto.com image above and are archived in Categories under Gilderdale case

ME agenda is not able to respond to enquiries in connection with the case from members of the public or the media.

Independent  |  26 January 2010

Prosecuting suicide-death mother Kay Gilderdale ‘in public interest’

 

Times  |  26 January 2010

The entire front page of today’s Times is devoted to the Gilderdale case with a double page spread on pages 7 and 8.

Video on this Times page

Jeremy Vine  Radio 2

BBC Northampton

Humberside Radio

Times  |  26 January 2010

http://www.timesonline.co.uk/tol/news/uk/crime/article7002405.ece

26 January 2010

Devoted mother Kay Gilderdale should never have been prosecuted, says judge

A High Court judge has criticised the Director of Public Prosecutions for personally pursuing an attempted murder charge against a “selfless and devoted” mother who helped her acutely ill daughter fulfil her wish to die.

As Kay Gilderdale, pictured right with her daughter, walked free from court yesterday after being cleared unanimously of attempted murder, the trial judge, Mr Justice Bean, repeatedly questioned whether the emotive case had been in the public interest.

Last night, the 55-year-old mother of two spoke for the first time of how her heart had been “ripped apart” between her maternal instinct to save her daughter Lynn, 31, and respect her repeated pleas for help to end 17 years of suffering since she contracted ME.

The former nurse had admitted assisting her daughter’s suicide by giving her 420mg of morphine to inject herself in December 2008.

Related Links

‘I’ve had enough of being in so much pain’
New calls to clarify assisted dying law
ME: a debilitating illness with no known cure

She was charged with attempted murder after it emerged that she had given Miss Gilderdale medicine to ease her suffering in her final hours.

Only now can it be revealed that during initial legal arguments Judge Richard Brown, who presided over the case before trial, invited the CPS to drop the attempted murder charge.

Referring to her guilty plea to assisted suicide, he asked: “Wouldn’t it be better to accept it now rather than let this defendant get tangled up in a messy trial for the sake of some legal mumbo jumbo?”

The case was reviewed by Keir Starmer, the DPP, after he published guidelines on assisted suicide last September, but the attempted murder charge was not dropped.

Mr Justice Bean’s decision to question Mr Starmer’s role and that of the Crown Prosecution Service will reignite the debate on mercy killings.

The judge thanked the jury for their “common sense, decency and humanity” in choosing to acquit Mrs Gilderdale. Sources close to the family suggested that her trial was used as a test case to sound out public opinion. The CPS remained adamant that its decision to pursue the case was right, saying that the law did not allow mercy killings.

Mrs Gilderdale did not give evidence during the trial. Afterwards, she described the torment of trying to come to terms with a loved one’s repeated pleas to be allowed to die.

“You’re torn apart because you have one part of you wanting to respect your daughter’s wishes and understanding everything they have been through, and you have got your heart being ripped out at the same time because all you want to do is to get them better and keep them alive,” Mrs Gilderdale told the BBC Panorama programme.

“It has been the hardest thing I have ever experienced and will ever experience in my whole life, no matter what happens to me. There will be nothing that will compare to the pain and heartbreak of watching my beautiful daughter leave this world.”

The public gallery at Lewes Crown Court erupted into applause as the jury unanimously cleared Mrs Gilderdale of attempted murder after deliberating for less than two hours following a week-long trial.

Before sentencing her for assisting a suicide, the judge asked who decided to continue with the attempted murder charge. Sally Howes, QC, for the prosecution, replied: “Ultimately the decision was taken by the DPP in consultation in November last year.”

Asked whether it was thought to be in the public interest, she replied: “It was thought at the highest level that this was a case that should be canvassed before the jury.”

The judge released Mrs Gilderdale with a one-year conditional discharge. She replied quietly: “Thank you. Thank you very much.”

Outside the court, Stephen Gilderdale 35, said that he was proud of his mother for her “selfless actions”.

The jury had been visibly moved by the account of two parents struggling to come to terms with the realisation that their daughter had lost the will to fight a debilitating condition.

Richard Gilderdale told how his daughter wanted to end her “wretched existence”. On December 2, 2008, he had sent his usual evening text messages to his ex-wife and daughter to see how a new treatment was going. In his final message to his daughter, he said: “Good night. Sleep well. I love you.”

In the early hours of the following day, Miss Gilderdale summoned her mother to her bedroom and pleaded with her to help her kill herself.

http://www.timesonline.co.uk/tol/life_and_style/health/article7002306.ece

Lynn Gilderdale’s moving account of why she decided to end her life

OK guys, I have something really important to say. I want to talk about something extremely private and personal to share with you, my closest friends. After many years of serious deliberation, I have pretty much come to a huge decision. I hope you will try to understand my reasons for this decision and even if you don’t personally agree with it I hope you won’t judge me too harshly.

I don’t know how to begin. I am just going to come out with it. Here goes, deep breaths. Basically I think some of you have known for a while I have had enough of this miserable excuse for a life, of merely semi-existing for the last 16½ years. I have had enough and I want to die. This is no whim and certainly not just because of the reactive depression diagnosed a few months ago. I am no longer on antidepressants because they weren’t doing anything for me.

I really, really, really want to die and have had enough of being so sick and in so much pain every second of everyday and, basically, one serious health crisis after another. I am tired, so very, very tired and I just don’t think I can keep hanging on for that elusive illness-free existence.

I can’t keep hanging for that ever diminishing non-existent hope that one day I will be well again. This is something I have thought long and hard about, and more than once about. I’m sure it’s what I want. I have discussed and continued to discuss with my parents at great length. Although they obviously desperately don’t want me to go, they can see I have just had enough and understand why I can’t keep hanging on for much longer.

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A few months ago, some pretty extreme situations arose. Something happened here and I was finally tipped over the edge. I tried to end my life by sticking a syringe straight down into my veins and simultaneously a syringe full of air. This was not a desperate cry for help, it was a serious attempt to end my life. It should have been enough to kill a grown man. No, it didn’t finish me off. Eventually, I have become tolerant to morphine after being on it for years.

All the overdose did was render me unconscious for a few hours until I finally felt Dad shaking me awake.

That was really the first time my parents knew how depressed I was. I had managed to hide it by using my time-worn, fake-happy face, when they are around. I begged my parents not to tell the doctor what I had done. But, I was put on antidepressants.

Drugs have stopped me from crying all the time, but it hasn’t stopped me from my desire not be on this planet any more. Nothing can change my mind. I have since promised I won’t try to kill myself again in secret.

Injecting morphine is the only reliable suicide method I have access to myself. There’s no other possible way to do it on my own.

Dad, he has always hated me talking about it in the past. He was quite heartbroken. He said: “I understand. But what would I do without my best mate?” This made me sob even harder than I already had.

After talking to me for ages, they both were extremely reluctant but agreed that if something life-threatening did happen to me they promised that they would inform the doctors and nurses that I didn’t want to be revived in any circumstances. I refuse to go back for more treatment.

I know there is a slim chance that I could fully recover and live a relatively normal life but even if I wake up tomorrow, I still won’t be able to live the life I dreamt about living.

My ovaries have packed up — I won’t be able to have children, my all time favourite wish.

I am already 31 years old. By the time I have found the man I want to have children with I will be far past the age. I cannot see myself ever being well enough to do any of this.

Also my bones are so osteoporotic that every cough and sneeze could cause a fracture. How can I live the life I have dreamed of; swimming, sailing, running, cycling. The kind of life I had before it was taken away from me at the age of 14.

My body is tired and my spirit is broken. I have had enough. Can you understand that? I hope you can, I really, really do.

In addition to not wanting any life-saving treatment, if I am ever presented with an opportunity to leave this world, I have to admit I will grab it with both hands.

I understand people think I am just depressed or worse — suicide is far from easy in my opinion and recent experience — or they think it is ridiculous of thinking of suicide when there is still a chance I could recover.

I am also painfully aware that I have a couple of special friends with their own terrible diseases.

I was 30 last year, the desire to leave all this pain and sadness behind me has nothing but increased. I want to die so, so much. Mum and I have probably spent hours on and off discussing everything, despite her doing her best to make me see things differently. My resolve to leave this life has done nothing but intensify.

I am sorry. I know this may be a shock to some of you. Try to put yourself in my situation. Read all the newspaper articles online. This is only a tiny part of what I have been through in the past 16 years.

To see what every second of life in intense pain, feeling permanently and extremely ill, not just lying in a bed resting but 100 per cent reliance on others to care for my basic needs. I have survived because of tubes of medicine, pumps and drugs. Without all this modern technology I wouldn’t be here.

Imagine you lived in one small room, in one single bed for 16 years since the age of 14. Imagine being 30 years old and never having kissed someone properly. Yep, I am that pathetic 30-year-old virgin that everyone ridicules.

Imagine having the painful bones of a 100-year-old woman unable to move without risking a fracture. Imagine being unable to get the spinning thoughts out of your head, other than by slowly typing e-mails.

Imagine not being able to turn yourself over in bed or move your legs.

Imagine having to use a bed pan lying down and having your mother wipe your bum for you.

Imagine having never been in a pub or club at 31 years old. Imagine never having been able to fulfil one thing above all else — that thing that should be a right for all young women, the right to have a young child. I know some women are unable to, but it doesn’t stop my heart from aching and the need to hold my own baby.

Imagine being imprisoned inside the miserable existence that is your life.

I don’t have to imagine of that. My body and mind is broken. I am so desperate to end the never-ending carousel of pain and sickness and suffering. I love my family. I have nothing left and I am spent.

How are Mum and Dad coping with all this? They are utterly, utterly heartbroken, naturally. Although I fear they won’t get over losing me and they don’t want me to go, and despite all the pain they must be in every time I discuss this whole thing, they must understand why I’ve had enough of this life and can’t keep hanging on. They both said they would either die or feel the same. I am so lucky to have incredible parents.

I desperately want to die. Mum and Dad know I have made up my mind.

They have made sure repeatedly that this is what I truly want. And now I’m not going to resist temptation if a way of ending my life falls into my lap.

Even though I can’t imagine how hard this must be for them, obviously they won’t want to lose me but they can’t bear for me to suffer any more than I have — that’s true unconditional love. I will never be able to thank them for putting my needs above theirs. However sad it is, it’s going to be my time to go very soon.

November 2008: I am afraid I can’t lie. I still do crave suicide with every fibre of my being. I promised my parents that I won’t attempt to do it in secret again. If the chance falls into my lap I will grab it with both hands. Mum regularly goes through everything with me. I never waver, I just become more and more sure as time passes. I have always stated that if I was unable to make a decision myself the power goes jointly to my parents. I trust them implicitly with my life and death. I know they won’t do the selfish thing in keeping me here purely for themselves.

http://business.timesonline.co.uk/tol/business/law/article7002006.ece

Gilderdale case prompts fresh calls to clarify the law on assisted dying

Frances Gibb, Legal Editor

One devoted mother who helps her sick daughter to end her life with tablets and morphine walks free from court with a suspended sentence.

Another is jailed for murder, to serve a minimum of nine years, after injecting her brain-damaged son with a lethal dose of heroin.

The two contrasting cases have reignited the debate over “right to die” and whether those who assist a loved one to end their suffering should be subject to criminal law.

Both involved a loving parent who could not bear to see a child suffer. Both, therefore, were acts of mercy. But there were key differences: Frances Inglis’s son, Thomas, 22, who had brain damage, had never indicated an intention to die. His mother believed him to be in pain and could not accept an encouraging medical prognosis.

Kay Gilderdale’s daughter, Lynn, 31, had attempted suicide. She had considered it over time and contemplated going to the Dignitas clinic in Switzerland. When a first attempt at suicide failed, her mother set about trying to help her to end her life.

Last July Keir Starmer, QC, Director of Public Prosecutions, outlined 16 “public interest factors” in favour of a prosecution and 13 factors against taking legal action in order to bring clarity to existing assisted suicide legislation.

Mrs Gilderdale was charged not just with attempted assisted suicide but also with attempted murder. A spokesman for the Crown Prosecution Service said that this was because the evidence suggested that her daughter may not have died from an assisted suicide. “It was not clear cut: there was a sequence of events and the toxicologist could not prove which of these stages resulted in death,” he said.

The case exposed the acute difficulties for prosecutors, judges and juries alike, and adds to the pressure for greater clarity in the law.

Sarah Wootton, chief executive of Dignity in Dying, said: “Ultimately, the Government needs to review the law in this area. As this case highlights, at present the law is a mess.”

However, Peter Saunders, director of Care Not Killing, said that the law acted as a powerful deterrent to protect vulnerable people from exploitation and abuse.

Judges should have a wide discretion to temper justice with mercy. Then they can show compassion in hard cases without giving a green light to murder.

BBC News

http://news.bbc.co.uk/1/hi/uk/8480039.stm

Lynn Gilderdale ‘mercy killing’ verdict leads papers

The acquittal of the Sussex nurse Kay Gilderdale – who was accused of murdering her severely ill daughter Lynn – is the lead in several papers.

A judge’s criticism of prosecutors for pursuing the case is the Times’ focus .

It also carries Lynn’s diary entry , in which she says she has “had enough of being so sick and in so much pain”.

The Daily Mail says the case was in “stark contrast” to that of Frances Inglis, jailed for fatally giving her son heroin – as Lynn wanted to die.

Guardian

Independent

The Scotsman

London Standard

Telegraph

Lynn Gilderdale: how a 14-year-old was condemned to a life lived from a bed

At the age of 14, Lynn Gilderdale was the picture of health. Sporty, athletic, she excelled at ballet, pursued her love of horses with vigour and was an accomplished musician.

By Caroline Gammell Published: 7:00AM GMT 26 Jan 2010

Gilderdale on the Isle of Wight, aged 12 Photo: CAIRNS

She swam, she cycled, she played the clarinet and, like a typical teenager, enjoyed spending time with her friends.

But in November 1991, that life came shuddering to an end.

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She came home from Uplands School in Wadhurst, East Sussex, after a fairly ordinary day, which included a routine inoculation against tuberculosis, and felt unwell.

She never recovered.

Flu was followed by bronchitis, tonsillitis and glandular fever and within three months, her life had changed beyond all recognition.

The teenager lay confined to her bedroom, ME had left her unable to move her legs, swallow or eat. At her most severely ill, she could recognise no one.

She lost the power of speech and had to develop a sign language with her parents that they alone understood.

Her life became ruled by the tubes running down her nose, into her chest and inner thigh, the tubes that fed her and that were a constant reminder that she would never again live a normal life.

Her dreams of returning to the sport she loved, of kissing boys, even of being a mother were crushed one by one. Exchanged for a life reliant on a cocktail of drugs to dull her suffering. It was in her own words: “a miserable excuse for a life”.

At just 20 years old she went through the menopause further eroding her health and her bones became brittle and vulnerable to fracture.

Weeks of suffering turned to months turned to years, and her hopes that she would one day get better, that there would be a cure, were ground down by endless hospital visits and fitful sleep.

But as Miss Gilderdale steadily lost all belief that she would ever get better, there was one person constantly by her side.

At the age of 37, her mother Kay gave up all semblance of a normal life – her work in accounting, holidays and friends – to care round the clock for her daughter.

In 2002, her marriage to Miss Gilderdale’s father Richard collapsed after nearly 30 years, although he remained devoted to his daughter and on friendly terms with his former wife.

For nearly two decades, mother and daughter remained cocooned in their unassuming brick bungalow in the small village of Stonegate, East Sussex.

Visitors – save that of her father and her older brother Stephen – were rare and, in any event, unwelcome because of the noise and potential infection they could bring.

Every morning, her Irish-born mother greeted her in hushed tones, keeping the cotton curtains of her bedroom drawn, regardless of the weather outside because her daughter’s condition meant she could tolerate neither noise nor light.

Resting on a sheepskin rug spread over her sheets to try and prevent bedsores, she would call to her mother for her every need. She required help with the simplest of tasks, such as wanting to turn over in her own bed.

A trained auxiliary nurse, Mrs Gilderdale would come swiftly, responding to her daughter’s voice calling to her from the intercom set up between the bedroom and the sitting room.

They had set up the system to make her daughter feel part of the house. The four walls of her bedroom, cluttered with medical paraphernalia to keep her alive and soft toys to lift her spirits, was her only domain.

Her one concession to the outside world was her computer, with a keyboard small enough to rest on her legs and allow her to communicate with friends.

These were not conventional friends. Most of them she had never met but their lives were all ruined by illness as hers was and as part of an online community, they shared their suffering and found comfort with each other. It was to these people that she revealed her darkest thoughts in an online journal.

But the computer offered solace and happiness as well. She used it to buy presents for her virtual friends as well as family.

Shortly before she died, her father helped her book tickets to the musical Oliver! and a night in a hotel in London for her mother. It was her way of saying thank you for all she had done.

Miss Gilderdale knew only two other environments – the inside of an ambulance and hospital, where she would end up most winters because she was so prone to infection.

During her final hospital visit, she picked up not one but four infections, including one which led to the indignity of being forced to use a bedpan for hours at a time.

It was this constant illness that made life so intolerable. Miss Gilderdale decided she wanted to die and drew up a living will in which she said she feared “degeneration and indignity more than death”.

An attempt to take her own life in 2007 failed, as the morphine she injected was not enough. Her father found her, nearly unconscious, and shook her awake.

She talked to her parents about suicide and what it would mean but it hurt her. Talking to her father, a retired police officer with Sussex Constabulary, about ending her life made her sob. He told her he didn’t want to lose her. But they understood her depths of despair.

Mr Gilderdale, who broke down in tears during his time in the witness box, spoke fondly of his daughter’s good looks, her long dark hair framing her fragile, pale face. But even that had been taken away from her in the last months of her life as her face began to swell.

On the morning of December 3, 2008, she decided she had had enough. Dressed in blue and white checked pyjamas, she called to her mother at 1.45am and told her she could not go on. Mrs Gilderdale tried to persuade her daughter otherwise but failed and at 3am she gave her daughter two large doses of morphine, with which she injected herself.

Miss Gilderdale thought the drug would bring her peace.

For her mother, the ordeal which would see her in court 13 months later, had only just begun. Over the next 30 hours, she neither slept nor ate, tending to her daughter as she clung on to life.

Scouring the internet for information, she gave Miss Gilderdale sleeping pills, antidepressants and further doses of morphine to try and make her comfortable. By 7.10am on December 4, her daughter was dead, aged 31.

She had kept everyone away from the house and when her daughter finally slipped away, an exhausted Mrs Gilderdale finally contacted the world outside.

She sent a text to Lynn’s father. It read: “Please can you come now. Be careful. Don’t rush.”

Postings on ME agenda site for media coverage of the death of Lynn Gilderdale and the legal case are identified by the Freefoto.com image and are archived in Categories under Gilderdale case

Kay (Kathleen) Gilderdale cleared of attempting to murder daughter with ME

Kay Gilderdale cleared of attempting to murder daughter with ME

Shortlink: http://wp.me/p5foE-2Ge

It is understood that the case will feature in Panorama on Monday 01 February 2010.

Postings on ME agenda site for media coverage of the death of Lynn Gilderdale and the legal case are identified by the Freefoto.com image above and are archived in Categories under Gilderdale case

ME agenda is not able to respond to enquiries in connection with the case from members of the public or the media.

Times Online  |  25 January 2010

 

Kay Gilderdale cleared of attempting to murder daughter with ME

http://www.timesonline.co.uk/tol/news/uk/crime/article7001909.ece

[...]

The decision to charge one of the leading ME campaigners with the attempted murder of her daughter, who had featured in newspaper articles to try to raise public awareness about the condition, was inevitably controversial.

Only now can it be revealed that two judges pondered the merits of extra charges brought by the CPS during lengthy legal arguments.

First, Judge Richard Brown invited the lawyers to drop two charges in light of Mrs Gilderdale’s guilty plea, adding that he felt a trial would “not be in the public interest”.

Referring to her guilty plea to assisting attempted suicide, he said: “It is a serious charge that appears to address exactly what happened.

“Wouldn’t it be better to accept it now rather than let this defendant get tangled up in a messy trial for the sake of some legal mumbo-jumbo?”

The subsequent trial judge, Mr Justice Bean, then ruled that the charge of aiding and abetting an “attempted” suicide be dropped as it was “technical to a baffling extent.”

Even after the first day of the case, the jury was bewildered by the attempted murder charge — the only remaining charge — and sent a note asking for clarification.

The prosecution told the jury that if they decided she had intended to try to murder her daughter once her suicide attempt with the morphine appeared to have failed, then she was guilty. It also did not matter whether Miss Gilderdale was going to die from the morphine she had injected herself, if her mother attempted to kill her with yet more drugs, that may or may not have worked, she was guilty in law, they were told.

Full article here

See also, today: http://www.timesonline.co.uk/tol/news/uk/health/article7001848.ece

(Mentions APPG on ME report into service provision.)

See also, today:

http://www.timesonline.co.uk/tol/news/uk/crime/article7001494.ece

BBC

Guardian

Independent

Express

See also earlier reporting:

http://www.bbc.co.uk/southeasttoday/

Click on orange text “Latest Programme” to open BBC Media Player

http://news.bbc.co.uk/1/hi/england/sussex/8479002.stm

Court told how ME sufferer was sexually assaulted (Kent and Sussex Courier, 22 January 2010)

http://www.thisissussex.co.uk/news/Court-told-sufferer-sexually-assaulted/article-1746238-detail/article.html

Mother ‘tried to ease pain of ME daughter’, court told (Daily Telegraph, 23 January 2010)

http://www.telegraph.co.uk/news/uknews/crime/7054732/Mother-tried-to-ease-pain-of-ME-daughter-court-told.html

Mention of Kay in other current stories:

Mercy killing mum Frances Inglis tells of how she would have faced the death penalty to stop her son’s suffering (Dail Mirror, 23 January 2010)

here:
http://www.mirror.co.uk/news/top-stories/2010/01/23/jail-s-nothing-i-would-ve-faced-death-penalty-to-put-my-boy-out-of-his-misery-frances-inglis-115875-21988879 /

Final paragraph:

A jury was told yesterday [Friday 22 January 2010] mum Kay Gilderdale “crossed the line” between trying to help her desperately ill daughter commit suicide and trying to kill her. Gilderdale, 55, of Stonegate, East Sussex, denies attempted murder.

Times: ‘Doctors, school, friends thought I was faking chronic fatigue syndrome’ 25 Jan 09

Times section Times2 Health: ‘Doctors, school, friends thought I was faking chronic fatigue syndrome’

Shortlink: http://wp.me/p5foE-2G7

[The right hand side of this double spread, which includes a large photo of Ms Warner, sits alongside a Dr Mark Porter piece on euthanasia and the recent Inglis legal case.]

Times

http://www.timesonline.co.uk/tol/life_and_style/health/features/article6998742.ece

January 25, 2010

‘Doctors, school, friends thought I was faking chronic fatigue syndrome’

As the trial of Kay Gilderdale puts ME back in the spotlight, we ask why more is not being done to help sufferers

It says a lot about the public perception of myalgic encephalomyelitis (ME) that it is a surprise to find that Nicola Warner is lively, positive and talks a lot. That’s the initial impression anyway. It’s only when you spend a little time in her company that you notice a certain stillness or perhaps sadness in her face and it becomes obvious that she is not entirely well.

Nicola, now 27, was 12 when she became ill with glandular fever. A year later, having been bedridden for eight months, she was told by a paediatrician that she had ME. He gave her a factsheet that terrified her, she says. “It described my symptoms, the pain in my joints and my muscles, the overwhelming fatigue, dizzy spells, nausea, migraines, memory loss…I wanted to go back to school to be with my friends.”

On her first day back Nicola collapsed and had to be carried out of the lesson. That was her last day at school. The GP told her parents that if she didn’t get out of bed she would become paralysed. Every morning her mum helped her to walk the few steps from her bed to the bathroom in the family’s home in Theydon Bois, Essex. The first time, she took three hours.

“I couldn’t concentrate, couldn’t read or watch television, couldn’t have a conversation. So I couldn’t see my friends,” Nicola says. “It was incredibly lonely. Some people thought I was faking it — neighbours, friends, school, doctors. I wasn’t making it up, I wasn’t being lazy though I was isolated and depressed. It wasn’t a mental thing but because I wasn’t leading a normal life there were mental issues surrounding it.”

In recent days the trial of Kay Gilderdale, who has admitted assisting the suicide of her daughter, Lynn, an ME sufferer, but denies attempted murder, has raised the profile of the condition that has no known cause, no diagnostic test, no cure and few treatments. It is estimated that 250,000 people suffer from it in the UK, almost three times the number who have multiple sclerosis.

As Nicola discovered, ME has long been the butt of scepticism and it was only in 2002 that Sir Liam Donaldson, the chief medical officer, recognised it as a clinical condition. The Medical Research Council endorsed the view in 2003, the following year the Government allocated £8.5 million to develop 12 specialist centres across England and in 2007 NICE produced assessment and treatment guidelines.

Even so it has been hard to shift the suspicion that the condition is a malingerers’ charter and that it has a psychological basis, a proposition fiercely resisted over the years by vociferous campaigners. In the past their arguments were often emotional but today ME charities are more likely to refer the media to a relevant professional.

The ME community remains frustrated by studies that show that as many as 50 per cent of GPs don’t recognise the condition. Such is the hostility engendered by the debate that medical professionals who view ME as a psychiatric disorder declined to contribute to this article. “My views are too controversial to publish,” says one who believes that many patients develop ME, also known as chronic fatigue syndrome (CFS), in the context of work-related stress.

“It’s like a battlefield,” says Dr Neil Abbot, operations director of ME Research UK. He describes the lot of the ME patient as a “Kafkaesque nightmare”. “There isn’t any education on the illness in medical schools and the GP hasn’t got anywhere to go [for information].”

The scientific literature remains small: 2,500 articles over the past ten years compared with 20,000 for MS. What do we know about the condition? “It depends on what you mean by know,” Abbot replies. “There are thousands of individuals who are definitely ill. They think they have a physical illness and most of their families do too. Some are put in a box called ME/CFS, many aren’t diagnosed. The treatments on offer are psychologically based, such as cognitive behaviour therapy and graded exercise. They help some individuals to cope with the symptoms but they aren’t the answer. Our aim is to make people recognise that there is a biomedical problem to be addressed.”

Abbot estimates that a quarter of ME sufferers are housebound and some bedbound. Sue Waddle, a magistrate from Hampshire, looks after her daughter, Lauren, who became ill when she was 12 and has been “virtually bedbound” since she was 16. She is now 24, remains in pain, sensitive to noise and light, and leads an isolated life. “Her GP has prescribed different treatments as different parts of her body have failed,” says her mother. “We’ve had sympathy in the most part but I think doctors are frightened that you’re going to demand something they can’t give. Her quality of life is dreadful and, although it’s difficult to say, I can’t see her living a normal lifespan.”

Waddle is excited by last year’s Nevada study that linked the XMRV retrovirus to ME, even though this month a study by King’s and Imperial Colleges found no link. More trials are needed, and the Medical Research Council says that two or three further studies will be completed within three months, though it is possible that the virus is not causative but a passenger.

“If this link could be confirmed maybe there would be a treatment that would give my daughter a better quality of life,” Waddle says. “If I was a doctor or a scientist I would be asking what was wrong with Lynn Gilderdale and why was she allowed to rot in her room for 17 years without anyone being able to do anything about it? People who are severely affected by ME are terribly neglected.”

The ME community’s wish-list is summed up by Dr Charles Shepherd, the medical director of the ME Association. First, there is a need to find out how many people have the condition, because only then can their clinical abnormalities be assessed and effective health services planned. Second, there is a need for research, in particular into muscle abnormalities, the role of the immune response to infection, and the extent that common neural pathways are involved in chronic fatigue in ME and other illnesses such as Parkinson’s and MS. Third, there is a need for trials of potential treatments.

Shepherd points out that the impasse that surrounds ME is partly caused by the difficulty in defining it. “This is an illness that cuts across medical boundaries: immunology, endocrinology, neurology, muscle pathology, infection and gene expression. There is piecemeal research going on that is not taking account of the links that are probably there.”

Stephen Holgate, professor of immunopharmacology at the University of Southampton, chairs the Medical Research Council’s expert group on CFS/ME. “As a clinician who sees patients with this group of diseases I recognise there’s a real thing here, it’s not all psychiatric or psychological,” he says. “Unquestionably in some of these patients there are abnormalities and biochemical changes in the brain, the central nervous system, the spinal cord or the muscles. My personal view is that we’re not dealing with a single condition.”

In 2008-09 the MRC spent £728,000 on ME/CFS out of a total research budget of £704.2 million. The MRC is ready to commission more research on ME, he says, but the stigma and scepticism associated with the condition do not make it an attractive option for top quality scientists.

“The debate is so polarised that scientists are frightened to get involved,” says Holgate. “My aim is to get everyone round the table, so that instead of people throwing bricks at each other we can agree on the priorities, get some quality proposals written up and build confidence in the research community. The need for more research is urgent because what’s happening now is unacceptable for patients and it’s costing the Government a lot of money.”

Nicola Warner knows that her condition has limited her experience of independent living but, despite a relapse when she was 20 and periods when she has contemplated suicide, she holds on to her ambition of becoming an actress. With support from her GP, a local CFS team and Action for ME, she says that she is in control of her ME, “rather than it controlling me”. By limiting herself to achievable goals she has been stable for the past year and has written a novel. Her next goal is to get it published.

Action for ME     ME Research UK     ME Association

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ICD-11 and DSM-V focussed editorials and articles: Advances in Psychiatric Treatment, Jan 10

ICD-11 and DSM-V (DSM-5) focussed editorials and articles in: Advances in Psychiatric Treatment, Jan 10

Shortlink: http://wp.me/p5foE-2G1

In the January 2010, Volume 16, Issue 1 edition of Advances in Psychiatric Treatment there are two editorials and some articles around ICD-11 and DSM-V revision classificatory issues.

The Bouch editorial commentary, the Sartorius editorial and the Thornicroft et al article all include brief references to “chronic fatigue syndrome”.

Read on at DSM-5 and ICD-11 Watch

ME Association: Board of Trustees meetings: 18 and 19 January 2010

ME Association: Board of Trustees meetings: 18 and 19 January 2010

Shortlink: http://wp.me/p5foE-2FU

MAY BE REPOSTED

This is a summary of key points to emerge from two meetings of The ME Association Board of Trustees.

These meetings took place at our Head Office in Buckingham on Monday afternoon, 18 January 2010 and on Tuesday morning, 19 January.

Informal discussions also took place on a number of issues on the Monday evening.

Please note that this is a summary of the two Board meetings – not the official minutes.

The order of subjects below is not necessarily in the order that they were discussed.

PRESENT

Trustees:

Ewan Dale (ED) – Honorary Treasurer
Mark Douglas (MD)
Neil Riley (NR) – Chairman, who joined by telephone link up
Charles Shepherd (CS) – Honorary Medical Adviser
Barbara Stafford (BS) – Vice Chairman
Janet Thomas (JT)

MEA Officials:

Gill Briody (GB) – Company Secretary
Tony Britton (TB) – Publicity Manager

Apologies:

Rick Osman (RO)

FINANCES, STAFF AND PREMISES

ED updated trustees on the current financial situation.

Trustees discussed the monthly management accounts for the period up to the end of November 2009. Despite a drop in some areas of income during the past few months, unrestricted donations in particular, the overall income for general funds continues to remain roughly in line with expenditure over the accounting period covered so far in 2009. Membership income is running slightly ahead of the same period in 2008 – which reflects a steady growth in new members joining the MEA throughout the year – as is income from fundraising events.

Trustees discussed some interest gaining options for the business and Ramsay Research Fund deposit accounts that are held in reserve.

DSM-V Somatic Symptoms Disorder Work Group presentation slides; draft due 10 February

DSM-V: APA now plan to publish draft proposals on 10 February;

DSM-V Somatic Symptom Disorder (SSD) Work Group presentation slides

Shortlink: http://wp.me/p5foE-2Fr

The American Psychiatric Association (APA), publishers of the Diagnostic and Statistical Manual of Mental Disorders (DSM), plans to publish draft proposals for changes to its diagnostic categories on 10 February. [1]

Comments will be accepted for a “two to three month” public consultation and reviewed by the relevant DSM-V Work Groups.

Commonly referred to as the “Psychiatrist’s Bible”, DSM is used by clinicians in the mental health field for diagnosing mental disorders. It is also used by medical insurance companies for reimbursement, in medical practices, clinics and hospitals, by social services agencies, governments, policy makers, courts, prisons, drug regulation agencies, pharmaceutical companies and researchers.

Diagnostic criteria defined within DSM determine what is considered a mental health disorder and what is not, what medical treatments individuals receive and which treatments health insurers will authorise funding for.

The inclusion of a disorder within DSM has revenue implications for pharmaceutical companies seeking licences for new drugs or to expand markets and applications for existing products.

Other than via journal editorials, no updates have been issued by any of the DSM-V Work Groups since April, last year.

The DSM-V Work Group for “Somatic Symptom Disorders” that is revising categories currently classified under DSM IV “Somatoform Disorders” has been exploring the potential for eliminating criteria such as “medically unexplained symptoms” in order to “diminish the dichotomy” between disorders based on “medically unexplained symptoms and patients with organic disease.”

The conceptual framework the Somatic Symptom Disorders Work Group were proposing, back in June 09, would

“…allow a diagnosis of somatic symptom disorder in addition to a general medical condition, whether the latter is a well-recognized organic disease or a functional somatic syndrome such as irritable bowel syndrome or chronic fatigue syndrome.” [2]

In November ’09, The Academy of Psychosomatic Medicine, the Organization for Consultation and Liaison Psychiatry and publishers of Psychosomatics, held its 56th Annual Meeting in Nevada. [3]

This Annual Meeting received “significant financial support” from its sponsor drug companies: AstraZeneca Pharmaceuticals, Bristol-Myers Squibb and Otsuka Pharmaceutical, Inc., Eli Lilly and Company and Ortho-McNeil Janssen Scientific Affairs, LLC.

Three members of the DSM-V Somatic Symptom Disorders Work Group, Francis Creed, Lawson Wulsin and Chair, Joel Dimsdale, gave presentations around “Medically Unexplained Symptoms” (MUS) and DSM-V, and around DSM-V proposals and progress.

Links for PDFs for the Creed and Wulsin presentations slides are appended. Text only for the Dimsdale presentation is available, and is also appended.

This material represents the most recent information around the deliberations of the DSM-V Work Group that is revising the categories currently coded under DSM-IV “Somatoform Disorders”.

When the APA publishes proposals for changes to its diagnostic categories information and details around the public consultation will be posted as soon as they are available on my new site:

DSM-5 and ICD-11 Watch    http://dxrevisionwatch.wordpress.com 

For a Table setting out Current DSM-IV Codes and Categories for Somatoform Disorders and their ICD-10 Equivalents, and for further information on the deliberations of the Somatic Symptom Disorders Work Group, see:

DSM-5 Watch page: DSM-5 proposals 2: http://wp.me/PKrrB-hT

From the American Psychiatric Association’s (APA) 10 December press release:

“APA will continue to work with the WHO to harmonize the DSM-5 with the mental and behavioral disorders section of the ICD-11. Given the timing of the release of both DSM-5 and ICD-11 in relation to the ICD-10-CM, the APA will also work with the CDC and CMS to propose a structure for the U.S. ICD-10 CM that is reflective of the DSM-5 and ICD-11 harmonization efforts.”

The Academy of Psychosomatic Medicine

Bethesda, Maryland, US
The Organization for Consultation and Liaison Psychiatry
Publishers of Psychosomatics

2009 ANNUAL MEETING in LAS VEGAS
November 11–14, 2009
56th Annual Meeting

“The Academy of Psychosomatic Medicine recognizes and appreciates the significant financial support provided by the following companies for the 56th Annual Meeting.

“AstraZeneca Pharmaceuticals
Bristol-Myers Squibb and Otsuka Pharmaceutical, Inc.
Eli Lilly and Company
Ortho-McNeil Janssen Scientific Affairs, LLC”

PRESENTERS’ SLIDES

Award Lectures

Hackett Award — Friday, 12:45pm – 1:45pm

Francis Creed, MD, FRCP: Can We Now Explain Medically Unexplained Symptoms? [1]

Open PDF Creed Presentation Slides

Open PDF References

[No transcript available] 

[Ed: This is a lengthy but important presentation by DSM-V SSD Work Group member, Francis Creed. It is unfortunate that a transcript is not available but please view the slides - there are many references to "Chronic fatigue syndrome", chronic fatigue and IBS and to the so-called "Functional Somatic Syndromes".]

Workshops

Workshop 15 — Saturday, 1:45 – 2:45pm

DSM-V for Psychosomatic Medicine: Current Progress and Controversies

Lawson Wulsin, MD, FAPM, DSM V for Psychosomatic Medicine: Current Progress and Controversies [2]

Open PDF Wulsin Presentation Slides

[No transcript available]

Joel Dimsdale, MD, FAPM, Update on DSM V Somatic Symptoms Workgroup [3]

Open PDF Text version of slides 

[Text version of slides]

Update on DSM V Somatic Symptoms Workgroup

Workshop #15, APM Annual Meeting, 11-14-09
DSM-V for Psychosomatic Medicine: Current Progress and Controversies

The Somatic Symptoms Workgroup was charged with reviewing most somatoform disorders, psychological factors affecting medical condition, and factitious disorders. There is considerable confusion regarding the diagnostic terminology and a reluctance to use these diagnostic labels. In addition to relying on expert opinion and the research literature, the Workgroup has also been conducting studies in an effort to learn how physicians actually use these diagnostic labels.

These diagnoses are rarely coded. In a study of >1,000,000 Virginia Anthem Blue Cross policy holders, Levenson [4] found that there were fewer than 600 patients with such disorders. Of these 600 patients, the largest group of patients were diagnosed with Psychological Factors Affecting Medical Condition.

Four focus groups were held in San Diego and Edinburgh. Psychiatrists from very different practice settings attended these groups (child psychiatrists, forensic psychiatrists, psychopharmacologists, consultation psychiatrists, psychotherapists). Nonpsychiatrist attendees included neurologists, pediatricians, and gastroenterologists. Using themes identified from the focus groups, an anonymous internet poll was designed. Using mailing lists from a variety of professional organizations, physicians were invited to respond to an anonymous poll.

Three hundred thirty-two physicians responded to the poll. Two thirds were psychiatrists; two-thirds were from the United States. While in general, physicians reported that somatoform patients were relatively rare in their practices (i.e. 0-2%), some physicians reported high prevalence of these patients. Over 30% of the physicians regarded the diagnostic guidelines for pain disorder and somatoform disorder not otherwise specified as “unclear.” Similar numbers of doctors regarded these particular disorders as “not useful.” Physicians were uniform in their opinion that patients disapproved of such diagnostic labels. Respondents also felt that there was a great deal of overlap between somatization disorder, pain disorder, hypochondriasis, and somatoform disorder not otherwise specified. In addition, they felt that that there was overlap between the somatoform disorders and anxiety and depressive disorders.

The Somatic Symptoms Workgroup has been struck by the fact that “medically unexplained symptoms” (MUS) comprise the crucial intellectual underpinning of the large group of somatoform disorders; yet MUS designations are perilous. They foster mind-body dualism; they confuse “undiagnosed” with “unexplained”; they contribute to doctor-patient antagonism; and they base a diagnosis on a negative, rather than positive criteria.

The Workgroup is proposing a series of changes to these disorders. First off, such disorders would be grouped together under one rubric entitled “Somatic Symptom Disorders”, which would include somatoform disorders, factitious disorders, and psychological factors affecting medical condition. Second, because of their many common features, the group is proposing that hypochondriasis, pain disorder, somatization disorder, and undifferentiated somatoform disorder be grouped together as “Complex Somatic Symptom Disorder”, with optional specifyers to designate when the predominant presentation is, for instance, hypochondriasis, etc. MUS is de-emphasized for this diagnosis, which would require both prominent somatic symptoms causing distress or dysfunction, as well as positive psychological criteria (behavior, cognition, perception).

A draft description of these and other disorders will be published on the APA’s DSM V website in January, 2010.*

In addition, a paper describing the thinking of the workgroup and providing a slightly earlier version of the diagnostic guidelines may be found at:

Dimsdale J , Creed F, and on behalf of the DSM-V Workgroup on Somatic Symptom Disorders. The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV—a preliminary report, J Psychosom Res, 66 (2009) 473–476

[Ed: Free full text here: http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext ]

The workgroup welcomes comments from colleagues about the proposed changes. Are the proposed changes on the right track? Does this proposal represent, all in all, a step forward? Are there major adverse unintended consequences? Workgroup members include: Arthur Barsky, Francis Creed, Javier Escobar, Nancy Frasure-Smith, Michael Irwin, Frank Keefe, Sing Lee, James Levenson, Michael Sharpe [5], Lawson Wulsin, Joel Dimsdale (chair).

Please send comments to Joel Dimsdale via email jdimsdale@ucsd.edu .

[Text Dimsdale Presentation Ends]

*Since postponed to 10 February

[1] American Psychiatric Association, DSM-V: The Future Manual
http://www.psych.org/MainMenu/Research/DSMIV/DSMV.aspx

[2] Editorial: Dimsdale J , Creed F, and on behalf of the DSM-V Workgroup on Somatic Symptom Disorders. The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report, J Psychosom Res, 66 (2009) 473-476
http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext

[3] The Academy of Psychosomatic Medicine 2009 ANNUAL MEETING November 11-14, 2009, Las Vegas.
http://www.apm.org/ann-mtg/2009/index.shtml

[4] Francis Creed, MD, is a member of the DSM-V Somatic Symptom Disorders Work Group (aka Somatic Distress Disorders Work Group) and was a member of the international CISSD Project, co-ordinated by Dr Richard Sykes, PhD. Francis Creed is a co-editor of the Journal of Psychosomatic Research.

[5] Lawson R. Wulsin, MD, is a member of the DSM-V Somatic Symptom Disorders Work Group.

[6] Joel E Dimsdale, MD, chairs the DSM-V Somatic Symptom Disorders Work Group, is a member of the DSM-V Task Force and was a member of the CISSD Project.

[7] James L Levinson, MD, is a member of the DSM-V Somatic Symptom Disorders Work Group and was a member of the CISSD Project.

[8] Michael Sharpe, MD, Director, University of Edinburgh Psychological Medicine Research Group, is a member of the Somatic Symptom Disorders Work Group, a co-PI of the UK MRC funded PACE Trial and was a member of the CISSD Project.

Related information:

The current use of the diagnosis “Psychological Factors Affecting Medical Condition” in DSM-IV is set out here:
http://www.behavenet.com/capsules/disorders/psyfactorsmedcon.htm

Francis Creed is currently working with EACLPP colleagues, Henningsen and Fink, on a draft white paper for the EACLPP MUS Study Group called: “Patients with medically unexplained symptoms and somatisation – a challenge for European health care systems”. A copy of the MUS Study Group working draft can be downloaded from the EACLPP site: http://www.eaclpp.org/documents/Patientswithmedicallyunexplainedsymptomsandsomatisation.doc

The January 2010, Editorial “Is there a better term than “Medically unexplained symptoms?” Creed F, Guthrie E, Fink P, Henningsen P, Rief W, Sharpe M, White P. J Psychoso Res: Volume 68, Issue 1, Pages 5-8, discusses the deliberations of the EACLPP study group. The Editorial also includes references to the DSM and ICD revision processes.

Javier Escobar, MD, Director of the University of Medicine and Dentistry of New Jersey (UMDNJ) – Robert Wood Johnson Medical School (RWJMS) Medically Unexplained Physical Symptoms (MUPS) Research Center, which has been supported with over $4M in funding by the US National Institute of Mental Health (NIMH), is a member of the DSM-V Task Force. Dr Escobar serves as a Task Force liaison to the Somatic Symptom Disorders Work Group and is said to work closely with this group.

In a 2008 Special Report by Marin and Escobar: “Unexplained Physical Symptoms What’s a Psychiatrist to Do?” Psychiatric Times. Vol. 25 No. 9, August 1, 2008, the authors write:

“…Perhaps as a corollary of turf issues, general medicine and medical specialties started carving these syndromes with their own tools. The resulting list of ‘medicalized’, specialty-driven labels that continues to expand includes fibromyalgia, chronic fatigue syndome, multiple chemical sensitivity, and many others.

“…These labels fall under the general category of functional somatic syndromes and seem more acceptable to patients because they may be perceived as less stigmatizing than psychiatric ones. However, using DSM criteria, virtually all these functional syndromes would fall into the somatoform disorders category given their phenomenology, unknown physical causes, absence of reliable markers, and the frequent coexistence of somatic and psychiatric symptoms.”

In Table 1, under the heading “Functional Somatic Syndromes (FSS)” Escobar and Marin list:

“Irritable bowel syndrome, Chronic fatigue syndrome, Fibromyalgia, Multiple chemical sensitivity, Nonspecific chest pain, Premenstrual disorder, Non-ulcer dyspepsia, Repetitive strain injury, Tension headache, Temporomandibular joint disorder, Atypical facial pain, Hyperventilation syndrome, Globus syndrome, Sick building syndrome, Chronic pelvic pain, Chronic whiplash syndrome, Chronic Lyme disease, Silicone breast implant effects, Candidiasis hypersensivity, Food allergy, Gulf War syndrome, Mitral valve prolapse, Hypoglycemia, Chronic low back pain, Dizziness, Interstitial cystitis, Tinnitus, Pseudoseizures, Insomnia, Systemic yeast infection, Total allergy syndrome”

Marin and Escobar August 2008 Special Report here on Psychiatric Times site: http://www.psychiatrictimes.com/display/article/10168/1171223