Countrygirl
Senior Member
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Thanks, flex. It would be good to know for sure. Don't tire yourself hunting, though.
All best wishes,
C.G.
All best wishes,
C.G.
-
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Countrygirl
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New responses in this thread:
http://www.plosone.org/annotation/l...notation/13ea20d1-91e6-49c3-bc4b-8fd1ca18f150
http://www.plosone.org/annotation/l...notation/13ea20d1-91e6-49c3-bc4b-8fd1ca18f150
Esther12
Senior Member
- Messages
- 13,774
Yup. From my reading, a lot of science commentators seem unimpressed with the way the WPI is responding.
They hit even harder here: http://www.rgj.com/article/20100113/NEWS/1130437/1321
Mikovitis: "You can't claim to replicate a study if you don't do a single thing that we did in our study," she said. "They skewed their experimental design in order to not find XMRV in the blood."
It seem's really premature to be saying things like that. They'd better know about a successful replication study that's coming out soon or they could be really undermining their future credibility. I think it's quite possible that there is somthing wrong with their XMRV research, but if so I want them to be able to go on to do future research. Jumping in and claiming that Imperial had skewed their experiments in order to avoid finding XMRV seems really risky.
They've gone militant! Scientists hate that malarky!
G
George
Guest
From the above link on PLoSone
Authors Response
Posted by Anthony_Cleare on 12 Jan 2010 at 19:55 GMT
RE: Authors Response
Herbiv4 replied to Anthony_Cleare on 12 Jan 2010 at 23:50 GMT
Authors Response
Posted by Anthony_Cleare on 12 Jan 2010 at 19:55 GMT
As the clinicians and scientists who provided the samples that were tested at Imperial, we wish to respond to some of the comments here and elsewhere regarding the patients who provided these samples.
In the paper we provided extensive details of the sample selection, criteria, assessments and investigations that are routine in our service, together with references/citations to all the material
To re iterate.
1. The criteria that we use are the Fukuda et al 1994 criteria that are far and away the most widely used across the world and in the research literature. We do not use the so-called Canadian criteria, which are designed for clinical use, not operationalised and do not translate easily for use in research. Even so, had we attempted to do so, a substantial proportion would have also met these clinical criteria.
2. The patients resembled those seen in secondary care and tertiary care services elsewhere most particularly they are similar to those seen in clinics in Australia, USA, Scotland, England and Northern Ireland (Wilson et al, 2001; Hickie et al, 2009).
3. We follow the same psychiatric exclusion criteria as mandated by the Fukuda criteria. We do this on the basis of semi structured interviews and assessment that we have also published. In addition, we also exclude patients with chronic somatisation disorder as defined by DSM-IV, which is not required by the Fukuda criteria, but most experts and clinicians agree are a different population. This is only a small percentage of our referrals.
4. In answer to one question, yes, our patients all report both mental and physical fatigue, exacerbated by mental or physical effort. Nearly all also describe post exertional fatigue and malaise.
5. We have a standard laboratory protocol for investigations, which are performed on all those referred to the clinic, unless they have been done recently by the referring doctor. These are solely for the purpose of excluding other diseases that can sometimes mimic CFS, and are part of the differential diagnosis. This is standard practice in every CFS service of which we are aware and forms part of every definition of which we are aware, including the Canadian criteria. In addition to the standard work up, we also now routinely test for coeliac disease, because we found a 2% prevalence of undetected coeliac disease (Skowera et al, 2001). In answer to another question, we perform a 9.00 am cortisol as a screener for Addisons disease.
6. In addition we also perform tests as part of research protocols. We always tell patients that these additional tests and investigations are not necessary clinically, and are performed with informed consent. 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 (see references). Hence it is untrue to state that patients at Kings for example do not show alterations in immune function in fact they do - see Skowera et al, High levels of type 2 cytokine-producing cells in chronic fatigue syndrome." Clinical and Experimental Immunology 2004: 135: 294-302. Similarly, many of our patients also show altered neuroendocrine, neurochemical and other biological parameters, and we have published many examples of these (see references below). It is therefore simply untrue that we either seek to find no biological changes in CFS, or fail to report those that we do find.
7. On the other hand, it is true that those who receive a diagnosis of cancer would be and are excluded from a diagnosis of CFS and if this is detected they would be immediately referred to the relevant clinical services. It is possible that this may be a difference from the cohort originally reported in Science, if the Wall St Journal is correct (http://online.wsj.com/art...).
8. We do not perform these additional tests to confirm or refute a diagnosis of CFS, but to further understanding of the illness. If and when a properly validated diagnostic test is developed for use within the National Health Service, all our patients will be offered it free of charge, just as they are already offered diagnostic assessment, investigation and treatment free of charge.
9. We did not perform any selection in any shape or form of the samples that we hold to send to Imperial College, as again has been suggested.
Overall, we wish to emphasis, and to do so emphatically, that our patients are typical of CFS patients seen in specialist care elsewhere. We specifically refute the suggestion that our patients are in some way more psychiatric, whatever that means, than those with real CFS, an assertion that has been repeatedly made in other venues. The rates of co morbid psychiatric disorder, for which we routinely screen, are again similar to those seen elsewhere. We draw attention to another study that compared two services run in the same London teaching hospital, one by an immunologist, the other a psychiatrist, but showed no fundamental differences between the two (White et al, 2004). On behalf of the patients that attend our CFS clinic, we resent the implication that they are in some way different, less ill, less disabled, let alone less deserving, than CFS patients in any other service or setting. It is otherwise, and we have provided a wealth of published data to back this assertion.
Professor Simon Wessely, Professor of Psychological Medicine
Professor David Collier, Professor of Psychiatric Genetics
Dr Anthony Cleare, Reader in Neuroendocrinology
REFERENCES
Allain T, Bearn J, Coskeran P, Jones J, Checkley A, Butler J, McGregor A, Wessely S, Miell J. Changes in growth hormone, insulin, insulin-like growth factors (IGFs) and IGF-binding protein-1 in chronic fatigue syndrome. Biol Psychiatry 1997;41:567-573
Bearn J, Allain T, Coskaran P, Miell J, Butler J, McGregor A, Wessely S. Neuroendocrine responses to D-fenfluramine and insulin induced hypoglycaemia in chronic fatigue syndrome. Biological Psychiatry 1995;37:245-252.
Caseras, X., David Mataix-Cols, Vincent Giampietro, Katharine A Rimes, Michael Brammer, Fernando Zelaya, Trudie Chalder, Emma L Godfrey (2006). "Probing the working memory system in Chronic Fatigue Syndrome: An fMRI study using the n-back task." Psychosomatic Medicine 68: 947-955.
Caseras X, M.-C. D., Giampietro V, Rimes KA, Brammer M, Zelaya F, Chalder T, Godfrey EL (2008). "The neural correlates of fatigue: A fatigue provocation study in Chronic Fatigue Syndrome." Psychological Medicine 38: 1-11.
Cleare A, Bearn J, Allain T, Wessely S, McGregor A, O'Keane V. Contrasting neuroendocrine responses in depression and chronic fatigue syndrome. J Affective Disorder 1995;35:283-289.
Cleare AJ, Sookdeo S, Jones, J, OKeane V, Miell J. Integrity of the GH/IGF axis is maintained in chronic fatigue syndrome. Journal of Clinical Endocrinology and Metabolism, 2000: 85: 1433-1439.
Cleare AJ, Miell J, Heap E, Sookdeo S, Young L, Malhi GS, OKeane V. Hypothalamo-Pituitary-Adrenal axis function in chronic fatigue syndrome, and the effects of low-dose hydrocortisone therapy. Journal of Clinical Endocrinology and Metabolism 2001: 86: 3545-3554.
Cleare AJ Keane, V, Miell JP et al. Levels of DHEA and DHEAS and responses to CRH stimulation and hydrocortisone treatment in chronic fatigue syndrome. Psychoneuroendocrinology 2004;29:724-32.
Cleare AJ, Messa C, Rabiner E, Grasby P. Brain 5-HT1A receptor binding in chronic fatigue syndrome measured using positron emission tomography and [11C]WAY-100635. Biological Psychiatry 2005: 57, 239-246.
Di Giorgio A Hudson, Jerjes W, Cleare AJ. 24-hour pituitary and adrenal hormone profiles in chronic fatigue syndrome. Psychosomatic Medicine. 2005;67:433-40.
Heap, L., Peters T, Wessely S. Vitamin B status in patients with chronic fatigue syndrome Journal of the Royal Society of Medicine 1999: 92: 183-185.
Fritz E, Smith J, Kerr J, Cleare A, Wessely S, Mattey D. Association of chronic fatigue syndrome with human leucocyte antigen class II alleles. Journal of Clinical Pathology 2005;58:860-863.
Hickie I, Davenport T, Vernon S, Nisenbaum R, Reeves W, Hadzi Pavlovic D, Lloyd A, Are chronic fatigue and chronic fatigue syndrome valid clinical entities across countries and health care settings? Australian and NZ Journal of Psychiatry, 2009; 43:25-35.
Jerjes WK, Cleare AJ, Wessely S, Wood P, Taylor NF. Diurnal patterns of salivary cortisol and cortisone output in chronic fatigue syndrome J Affective Disorder 2005: 87: 299-304.
Jerjes WT, NF; Wood, PJ; Cleare, AJ. Enhanced feedback sensitivity to prednisolone in chronic fatigue syndrome. Psychoneuroendcrinology. 2007;32:192-8.
Jerjes W, Peters T, Taylor N, Wessely S, Cleare A. Diurnal excretion of urinary cortisol, cortisone and cortisol metabolites in chronic fatigue syndrome. J Psychosom Res 2006: 60: 145-153
Peakman M, Deale A, Field R, Mahalingam M, Wessely S. Clinical improvement in chronic fatigue syndrome is not associated with lymphocyte subsets of function or activation. Clin Immun Immunopath 1997;82:83-91.
Saisch S, Deale A, Gardner W, Wessely S. Hyperventilation and chronic fatigue syndrome. Quarterly J Medicine 1994: 87:63-67.
Skowera, A., M. Peakman, et al. (2001). "High prevalence of serum markers of coeliac disease in patients with chronic fatigue syndrome." Journal of Clinical Pathology 54: 335-336.
Skowera A, Stewart E., Davis E, Cleare A, Hossain G, Unwin C, Hull L, Ismail K, Wessely S, Peakman M (2002). "Antinuclear antibodies (ANA) in gulf war related illness and chronic fatigue syndrome (CFS) patients." Clinical Experimental Immunology 129: 354-358.
Skowera, A., Cleare, A., Blair, D., Bevis, L., Wessely, S., Peakman, M (2004). "High levels of type 2 cytokine-producing cells in chronic fatigue syndrome." Clinical and Experimental Immunology 135: 294-302.
Underhill, J., Donaldson P, Mahalingam, M., Wessely A, Peakman M. (2001). "Lack of association between HLA and chronic fatigue syndrome." European Journal of Immunogenetics 28: 425-428.
Wilson A, Hickie I, Hadzi-Pavlovic D, Wakefield D. Straus S, Dale J, McCluskey D, Hinds, G, Brickman A, Goldenberg D, Demitrack M, Wessely S, Sharpe M, Lloyd A. What is chronic fatigue syndrome? Heterogeneity within an international, multicenter study. Australian & New Zealand J Psychiatry 2001: 35:520-527
White PD, Pinching AJ, Rakib A, Castle M, Hedge B, Priebe S. A comparison of patients with chronic fatigue syndrome attending separate fatigue clinics based in immunology and psychiatry. Journal of the Royal Society of Medicine 2002;95:440-4.
Winkler, A., Blair D, Marsden J, Peters T, Wessely S, Cleare A, (2004). Autonomic function and serum erythropoetin levels in chronic fatigue syndrome. Journal of Psychosomatic Research 56: 179-183.
Competing interests declared: Authors of the paper
In the paper we provided extensive details of the sample selection, criteria, assessments and investigations that are routine in our service, together with references/citations to all the material
To re iterate.
1. The criteria that we use are the Fukuda et al 1994 criteria that are far and away the most widely used across the world and in the research literature. We do not use the so-called Canadian criteria, which are designed for clinical use, not operationalised and do not translate easily for use in research. Even so, had we attempted to do so, a substantial proportion would have also met these clinical criteria.
2. The patients resembled those seen in secondary care and tertiary care services elsewhere most particularly they are similar to those seen in clinics in Australia, USA, Scotland, England and Northern Ireland (Wilson et al, 2001; Hickie et al, 2009).
3. We follow the same psychiatric exclusion criteria as mandated by the Fukuda criteria. We do this on the basis of semi structured interviews and assessment that we have also published. In addition, we also exclude patients with chronic somatisation disorder as defined by DSM-IV, which is not required by the Fukuda criteria, but most experts and clinicians agree are a different population. This is only a small percentage of our referrals.
4. In answer to one question, yes, our patients all report both mental and physical fatigue, exacerbated by mental or physical effort. Nearly all also describe post exertional fatigue and malaise.
5. We have a standard laboratory protocol for investigations, which are performed on all those referred to the clinic, unless they have been done recently by the referring doctor. These are solely for the purpose of excluding other diseases that can sometimes mimic CFS, and are part of the differential diagnosis. This is standard practice in every CFS service of which we are aware and forms part of every definition of which we are aware, including the Canadian criteria. In addition to the standard work up, we also now routinely test for coeliac disease, because we found a 2% prevalence of undetected coeliac disease (Skowera et al, 2001). In answer to another question, we perform a 9.00 am cortisol as a screener for Addisons disease.
6. In addition we also perform tests as part of research protocols. We always tell patients that these additional tests and investigations are not necessary clinically, and are performed with informed consent. 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 (see references). Hence it is untrue to state that patients at Kings for example do not show alterations in immune function in fact they do - see Skowera et al, High levels of type 2 cytokine-producing cells in chronic fatigue syndrome." Clinical and Experimental Immunology 2004: 135: 294-302. Similarly, many of our patients also show altered neuroendocrine, neurochemical and other biological parameters, and we have published many examples of these (see references below). It is therefore simply untrue that we either seek to find no biological changes in CFS, or fail to report those that we do find.
7. On the other hand, it is true that those who receive a diagnosis of cancer would be and are excluded from a diagnosis of CFS and if this is detected they would be immediately referred to the relevant clinical services. It is possible that this may be a difference from the cohort originally reported in Science, if the Wall St Journal is correct (http://online.wsj.com/art...).
8. We do not perform these additional tests to confirm or refute a diagnosis of CFS, but to further understanding of the illness. If and when a properly validated diagnostic test is developed for use within the National Health Service, all our patients will be offered it free of charge, just as they are already offered diagnostic assessment, investigation and treatment free of charge.
9. We did not perform any selection in any shape or form of the samples that we hold to send to Imperial College, as again has been suggested.
Overall, we wish to emphasis, and to do so emphatically, that our patients are typical of CFS patients seen in specialist care elsewhere. We specifically refute the suggestion that our patients are in some way more psychiatric, whatever that means, than those with real CFS, an assertion that has been repeatedly made in other venues. The rates of co morbid psychiatric disorder, for which we routinely screen, are again similar to those seen elsewhere. We draw attention to another study that compared two services run in the same London teaching hospital, one by an immunologist, the other a psychiatrist, but showed no fundamental differences between the two (White et al, 2004). On behalf of the patients that attend our CFS clinic, we resent the implication that they are in some way different, less ill, less disabled, let alone less deserving, than CFS patients in any other service or setting. It is otherwise, and we have provided a wealth of published data to back this assertion.
Professor Simon Wessely, Professor of Psychological Medicine
Professor David Collier, Professor of Psychiatric Genetics
Dr Anthony Cleare, Reader in Neuroendocrinology
REFERENCES
Allain T, Bearn J, Coskeran P, Jones J, Checkley A, Butler J, McGregor A, Wessely S, Miell J. Changes in growth hormone, insulin, insulin-like growth factors (IGFs) and IGF-binding protein-1 in chronic fatigue syndrome. Biol Psychiatry 1997;41:567-573
Bearn J, Allain T, Coskaran P, Miell J, Butler J, McGregor A, Wessely S. Neuroendocrine responses to D-fenfluramine and insulin induced hypoglycaemia in chronic fatigue syndrome. Biological Psychiatry 1995;37:245-252.
Caseras, X., David Mataix-Cols, Vincent Giampietro, Katharine A Rimes, Michael Brammer, Fernando Zelaya, Trudie Chalder, Emma L Godfrey (2006). "Probing the working memory system in Chronic Fatigue Syndrome: An fMRI study using the n-back task." Psychosomatic Medicine 68: 947-955.
Caseras X, M.-C. D., Giampietro V, Rimes KA, Brammer M, Zelaya F, Chalder T, Godfrey EL (2008). "The neural correlates of fatigue: A fatigue provocation study in Chronic Fatigue Syndrome." Psychological Medicine 38: 1-11.
Cleare A, Bearn J, Allain T, Wessely S, McGregor A, O'Keane V. Contrasting neuroendocrine responses in depression and chronic fatigue syndrome. J Affective Disorder 1995;35:283-289.
Cleare AJ, Sookdeo S, Jones, J, OKeane V, Miell J. Integrity of the GH/IGF axis is maintained in chronic fatigue syndrome. Journal of Clinical Endocrinology and Metabolism, 2000: 85: 1433-1439.
Cleare AJ, Miell J, Heap E, Sookdeo S, Young L, Malhi GS, OKeane V. Hypothalamo-Pituitary-Adrenal axis function in chronic fatigue syndrome, and the effects of low-dose hydrocortisone therapy. Journal of Clinical Endocrinology and Metabolism 2001: 86: 3545-3554.
Cleare AJ Keane, V, Miell JP et al. Levels of DHEA and DHEAS and responses to CRH stimulation and hydrocortisone treatment in chronic fatigue syndrome. Psychoneuroendocrinology 2004;29:724-32.
Cleare AJ, Messa C, Rabiner E, Grasby P. Brain 5-HT1A receptor binding in chronic fatigue syndrome measured using positron emission tomography and [11C]WAY-100635. Biological Psychiatry 2005: 57, 239-246.
Di Giorgio A Hudson, Jerjes W, Cleare AJ. 24-hour pituitary and adrenal hormone profiles in chronic fatigue syndrome. Psychosomatic Medicine. 2005;67:433-40.
Heap, L., Peters T, Wessely S. Vitamin B status in patients with chronic fatigue syndrome Journal of the Royal Society of Medicine 1999: 92: 183-185.
Fritz E, Smith J, Kerr J, Cleare A, Wessely S, Mattey D. Association of chronic fatigue syndrome with human leucocyte antigen class II alleles. Journal of Clinical Pathology 2005;58:860-863.
Hickie I, Davenport T, Vernon S, Nisenbaum R, Reeves W, Hadzi Pavlovic D, Lloyd A, Are chronic fatigue and chronic fatigue syndrome valid clinical entities across countries and health care settings? Australian and NZ Journal of Psychiatry, 2009; 43:25-35.
Jerjes WK, Cleare AJ, Wessely S, Wood P, Taylor NF. Diurnal patterns of salivary cortisol and cortisone output in chronic fatigue syndrome J Affective Disorder 2005: 87: 299-304.
Jerjes WT, NF; Wood, PJ; Cleare, AJ. Enhanced feedback sensitivity to prednisolone in chronic fatigue syndrome. Psychoneuroendcrinology. 2007;32:192-8.
Jerjes W, Peters T, Taylor N, Wessely S, Cleare A. Diurnal excretion of urinary cortisol, cortisone and cortisol metabolites in chronic fatigue syndrome. J Psychosom Res 2006: 60: 145-153
Peakman M, Deale A, Field R, Mahalingam M, Wessely S. Clinical improvement in chronic fatigue syndrome is not associated with lymphocyte subsets of function or activation. Clin Immun Immunopath 1997;82:83-91.
Saisch S, Deale A, Gardner W, Wessely S. Hyperventilation and chronic fatigue syndrome. Quarterly J Medicine 1994: 87:63-67.
Skowera, A., M. Peakman, et al. (2001). "High prevalence of serum markers of coeliac disease in patients with chronic fatigue syndrome." Journal of Clinical Pathology 54: 335-336.
Skowera A, Stewart E., Davis E, Cleare A, Hossain G, Unwin C, Hull L, Ismail K, Wessely S, Peakman M (2002). "Antinuclear antibodies (ANA) in gulf war related illness and chronic fatigue syndrome (CFS) patients." Clinical Experimental Immunology 129: 354-358.
Skowera, A., Cleare, A., Blair, D., Bevis, L., Wessely, S., Peakman, M (2004). "High levels of type 2 cytokine-producing cells in chronic fatigue syndrome." Clinical and Experimental Immunology 135: 294-302.
Underhill, J., Donaldson P, Mahalingam, M., Wessely A, Peakman M. (2001). "Lack of association between HLA and chronic fatigue syndrome." European Journal of Immunogenetics 28: 425-428.
Wilson A, Hickie I, Hadzi-Pavlovic D, Wakefield D. Straus S, Dale J, McCluskey D, Hinds, G, Brickman A, Goldenberg D, Demitrack M, Wessely S, Sharpe M, Lloyd A. What is chronic fatigue syndrome? Heterogeneity within an international, multicenter study. Australian & New Zealand J Psychiatry 2001: 35:520-527
White PD, Pinching AJ, Rakib A, Castle M, Hedge B, Priebe S. A comparison of patients with chronic fatigue syndrome attending separate fatigue clinics based in immunology and psychiatry. Journal of the Royal Society of Medicine 2002;95:440-4.
Winkler, A., Blair D, Marsden J, Peters T, Wessely S, Cleare A, (2004). Autonomic function and serum erythropoetin levels in chronic fatigue syndrome. Journal of Psychosomatic Research 56: 179-183.
Competing interests declared: Authors of the paper
RE: Authors Response
Herbiv4 replied to Anthony_Cleare on 12 Jan 2010 at 23:50 GMT
And to reiterate the criticisms that have been made in so many pleases already.... you did not provide patients suitable for a replication study.
If the Lombardi team manageds to use the Canadian criteria then what is hte big problem for anyone in hte UK to utilise the Canadian criteria?
What are you all frightened of.
And further more, your patients were all patietns who had attended your clinics and had probalby taken part in other studies.
Well how about choosing patients that have never participated in studies before.
How about chosing patients who are severaly affected and unabe to get to your clinics or to hospital appointments?
The 25% ME group has hundreds of members - severely affected patients with ICD-10 G93.3 Myalgic Encephalomyelitis - a condition that none of you actually recognise.
And just to close - you claim that as a group of psychiatrsits with no specialist interests in retro-virology that your patients who were seen in departments of psychiatry were not primarily patients who had mental health problems.
Yet your colleages are busily trying to have CFS reclasified to a somatoform category in ICD-11 and your colleagues in psychiatry interested in CFS are also trying to get CFS included in DSM-V.
And if you do not consider CFS to be a mental health issue then why was the NICE Guideline 53 discussed under the heading of mental health in a 2008 report the details of which are given below....
http://62.204.33.138/file...
South London and Maudsley NHS Foundation Trust
TRUST BOARD OF DIRECTORS SUMMARY REPORT
Date of Board meeting: 25th November 2008
Name of Report: Implementation of NICE guidance (Annual Report 2008)
Authors: Rosie Peregrine Jones and Dr Rosalind Ramsay
Approved by: (name of Exec Member) Dr Martin Baggaley
Presented by: Dr Ros Ramsay
Purpose of the report:
To outline progress within the Trust against the guidance issued by NICE which is relevant to mental health services
[ ... ]
Mental health clinical guidelines
[ ... ]
53 Chronic fatigue syndrome April 2007 May 2007 CAEC November 2008 SNIG
Alastair Santhouse
Ian Brown
[ ... ]
AMH [adult mental health]
Chronic Fatigue syndrome Lead: Alastair Santhouse
[ ... ]
A true replication study will not be a valid study until it uses the precise patient selection criteria as used by the Lombardi team.
A true replication study will not be a valid replication study until it uses the precise testing and evaluation techniques as used by the Lombardi team.
Anything less is scientifically flawed and open to legitimate deconstrucrtion and dismissal.
Use the Canadain criteria and do your work properly.
Use patients you usually ignore - patients severely affected and not before "screened" by the profession of psychiatry just to avoid any conflicts of interest.
After all one more XMRV positive CFS patient is one less patient recrutied for CBT and Graded Exercise isn't it?
No competing interests declared.
If the Lombardi team manageds to use the Canadian criteria then what is hte big problem for anyone in hte UK to utilise the Canadian criteria?
What are you all frightened of.
And further more, your patients were all patietns who had attended your clinics and had probalby taken part in other studies.
Well how about choosing patients that have never participated in studies before.
How about chosing patients who are severaly affected and unabe to get to your clinics or to hospital appointments?
The 25% ME group has hundreds of members - severely affected patients with ICD-10 G93.3 Myalgic Encephalomyelitis - a condition that none of you actually recognise.
And just to close - you claim that as a group of psychiatrsits with no specialist interests in retro-virology that your patients who were seen in departments of psychiatry were not primarily patients who had mental health problems.
Yet your colleages are busily trying to have CFS reclasified to a somatoform category in ICD-11 and your colleagues in psychiatry interested in CFS are also trying to get CFS included in DSM-V.
And if you do not consider CFS to be a mental health issue then why was the NICE Guideline 53 discussed under the heading of mental health in a 2008 report the details of which are given below....
http://62.204.33.138/file...
South London and Maudsley NHS Foundation Trust
TRUST BOARD OF DIRECTORS SUMMARY REPORT
Date of Board meeting: 25th November 2008
Name of Report: Implementation of NICE guidance (Annual Report 2008)
Authors: Rosie Peregrine Jones and Dr Rosalind Ramsay
Approved by: (name of Exec Member) Dr Martin Baggaley
Presented by: Dr Ros Ramsay
Purpose of the report:
To outline progress within the Trust against the guidance issued by NICE which is relevant to mental health services
[ ... ]
Mental health clinical guidelines
[ ... ]
53 Chronic fatigue syndrome April 2007 May 2007 CAEC November 2008 SNIG
Alastair Santhouse
Ian Brown
[ ... ]
AMH [adult mental health]
Chronic Fatigue syndrome Lead: Alastair Santhouse
[ ... ]
A true replication study will not be a valid study until it uses the precise patient selection criteria as used by the Lombardi team.
A true replication study will not be a valid replication study until it uses the precise testing and evaluation techniques as used by the Lombardi team.
Anything less is scientifically flawed and open to legitimate deconstrucrtion and dismissal.
Use the Canadain criteria and do your work properly.
Use patients you usually ignore - patients severely affected and not before "screened" by the profession of psychiatry just to avoid any conflicts of interest.
After all one more XMRV positive CFS patient is one less patient recrutied for CBT and Graded Exercise isn't it?
No competing interests declared.
Hysterical Woman
Senior Member
- Messages
- 857
- Location
- East Coast
Flex/You Know Who
Hi Flex,
I hope that you are not saying that you feel the need to defend yourself about calling SW "You Know Who" from my post!!! I am sorry if it came across that way. My comments were only interjected to try to make myself (and maybe someone else smile). Yes, I completely realize that this stuff is NOT a laughing matter, people are suffering! However, I am also concerned that if silly comments/smileys aren't made here and there that I might (like others), go sit in a corner and cry.
If you thought I made too much light of the situation, please forgive what I said. I am not a supporter of SW.
Take care,
Maxine
Hi Flex,
I hope that you are not saying that you feel the need to defend yourself about calling SW "You Know Who" from my post!!! I am sorry if it came across that way. My comments were only interjected to try to make myself (and maybe someone else smile). Yes, I completely realize that this stuff is NOT a laughing matter, people are suffering! However, I am also concerned that if silly comments/smileys aren't made here and there that I might (like others), go sit in a corner and cry.
If you thought I made too much light of the situation, please forgive what I said. I am not a supporter of SW.
Take care,
Maxine
Countrygirl
Senior Member
- Messages
- 5,502
- Location
- UK
A mere medal ....for ridding the planet of the likes of us!!!! Surely, flybro, nothing less than a peerage would suffice.
I can just see it now....our Simon, kneeling before the Queen, .........Lord Wessely ....has a certain je ne sais quoi don't you think..?
CJB
Senior Member
- Messages
- 877
They've really dug in deep.
All the insurers, politicians, etc. need is ONE paper/study disputing the XMRV finding to claim that the science is not "settled". Just look at the climate change science. it's been settled for a long while and there are still those who deny it and they point to "scientists" who have published otherwise.
Countrygirl
Senior Member
- Messages
- 5,502
- Location
- UK
King's patient says Wessely lied.
http://www.plosone.org/annotation/l...notation/13ea20d1-91e6-49c3-bc4b-8fd1ca18f150[/QUOTE]
There is an interesting reponse to Cleare's article. A former patient of King's says that neither he nor others were ever given the tests Wessely claims he uses for his patients. He has claimed that the I.C. group had been properly screened for physical abnormalities, as is his custom. Not according to his patients! They were given only the basic blood tests, so King's do not exclude patients with the physical signs that are detectable in M.E. This means, of course, that he will have genuine cases of M.E. in his patient sample. So why did he lie when he stated that they had all been screened for a stated list of tests? To impress upon colleagues that he does things by the book, ensuring that his patients are not physically ill? Another sham.This patient says that they were given literature suggesting that their symptoms were the result of deconditioning following a virus, which is then perpetuated by psycho-social factors. Nothing new there then - except the fib. He does not exclude physical illness, just prescribes GET. Dangerous stuff.
The patient concludes by saying: ' I believe the researchers at King's have a strong motive for wishing to contradict the findings of the WPI and judgement on these findings should be withheld until later, less biased tests are conducted.'
So Wessely's patients aren't as satisfied as he claims. What a surprise!
http://www.plosone.org/annotation/l...notation/13ea20d1-91e6-49c3-bc4b-8fd1ca18f150[/QUOTE]
There is an interesting reponse to Cleare's article. A former patient of King's says that neither he nor others were ever given the tests Wessely claims he uses for his patients. He has claimed that the I.C. group had been properly screened for physical abnormalities, as is his custom. Not according to his patients! They were given only the basic blood tests, so King's do not exclude patients with the physical signs that are detectable in M.E. This means, of course, that he will have genuine cases of M.E. in his patient sample. So why did he lie when he stated that they had all been screened for a stated list of tests? To impress upon colleagues that he does things by the book, ensuring that his patients are not physically ill? Another sham.This patient says that they were given literature suggesting that their symptoms were the result of deconditioning following a virus, which is then perpetuated by psycho-social factors. Nothing new there then - except the fib. He does not exclude physical illness, just prescribes GET. Dangerous stuff.
The patient concludes by saying: ' I believe the researchers at King's have a strong motive for wishing to contradict the findings of the WPI and judgement on these findings should be withheld until later, less biased tests are conducted.'
So Wessely's patients aren't as satisfied as he claims. What a surprise!
Countrygirl
Senior Member
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D
DysautonomiaXMRV
Guest
I have NOT moderated any comments I've logged into this post just now since last night infact, so how can I moderate a comment?
How would I do that anyway?
I also named no names, so how can it be a personal attack if it's not personal?
Seriously, I'm confused.
Is saying Cars are really slow and Cars pollute the earth a personal attack?
Saying Cars sold by Mr Smith is. But I didn't say any name.
Ohh well.
How would I do that anyway?
I also named no names, so how can it be a personal attack if it's not personal?
Seriously, I'm confused.
Is saying Cars are really slow and Cars pollute the earth a personal attack?
Saying Cars sold by Mr Smith is. But I didn't say any name.
Ohh well.
Alice Band
PWME - ME by Ramsay
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The normal "term of affection" widely used in the UK is
The Weasel
The Weasel
Martlet
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And for almost two decades that I know of.
For me, it is not so much the opinions that he holds - even though I vehemently disagree with them - but the way he says one thing to one person and another thing to another. If he was someone's mother, some psychiatrist somewhere would have a ball blaming him for the mental illnesses this sort of behaviour would cause in his children.
anne_likes_red
Senior Member
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Is it common for scientists to take shots at each other like this?
It unsettles me. :worried:
Even if it's the truth I'd rather see them cool headed and quietly confident at this stage of the game.
Meanwhile, bring on the next replication attempt! (And make it a good one.)
No this is not common, for researchers to make those types of accusations. But it happenes sometimes. I think it is very unfortunate for CFS to be caught in this type of cross-fire. Researchers need to ground their statements in empirical data. WPI appears to be taking offense at researchers who do not agree with them, and using defensive strategies, trying to change the debate about their study into a debate about CFS politics. That is a good debate strategy maybe, because it secures buy-in from ME patients who lack advocacy. But it is a poor long-term strategy because it ties ME/CFS to XMRV in the mind of the public, and if further replication studies discredit XMRV then WPI has just discredited ME/CFS. I personally never selected WPI as a spokesman for ME/CFS and do not like their attempt to take this role, regardless of the outcome of XMRV. They should stick to the scientific debate, and show some restraint. They are being overconfident.
Martlet
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I agree. I wonder what is prompting this sort of response though. I can only hope that WPI has some information that we are not yet privy to.
K
Katie
Guest
Kurt, don't forget the way that Wessely has spoken about the WPI study when it was first release and McClures comments since the replication. I did not select Wessely as my representative either and the way they have dismissively dealt with the study has been wholly unscientific including over stating the scope of their research. Both parties are being overconfident, both for their own motivations (as a guess, the WPI to keep up interest in XMRV and XMRV/CFS studies so it gets a decent bash and McClure and Wessely to protect reputations and the established psychological zeigeist) I'm not saying the WPI did the right thing, but the discourse is flowing both ways, it would be best if a truce could be agreed and all correspondence between both parties be solely backed up by science and not conjecture or expectation.