@ Sparklehorse. I would not expect the same rate of positives from general testing as in the study, see a some post up here. I also think 36% positive is high, 10 times more then the healthy control group. Better testing and antibody tests will probably also increase the positive number. My best guess is that XMRV testing is much more complicated/senstive than one could expect and thats why replication is difficult.
-
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Forgive me if this has already been pointed out.
I just wanted to ask anyone's opinion of the following (quote from the Imperial College/King's College research paper publihed by PLOS ONE)
"All patients had undergone medical screening to exclude detectable organic illness, including a minimum of physical examination, urinalysis, full blood count, urea and electrolytes, thyroid function tests, liver function tests, 9 a.m. cortisol and ESR".
If all the patients chosen for the study had normal results on all these tests, wouldn't that exclude just about every member of this forum?
Also, the report says that Simon Wessely was the only participant in the study responsible for hand picking the participants based on an interview.
"Responsible for providing samples and associated data from a well characterised and valuable cohort of subjects: SW."
I wonder if the result was more a matter of participant selection than variations in the science???
I just wanted to ask anyone's opinion of the following (quote from the Imperial College/King's College research paper publihed by PLOS ONE)
"All patients had undergone medical screening to exclude detectable organic illness, including a minimum of physical examination, urinalysis, full blood count, urea and electrolytes, thyroid function tests, liver function tests, 9 a.m. cortisol and ESR".
If all the patients chosen for the study had normal results on all these tests, wouldn't that exclude just about every member of this forum?
Also, the report says that Simon Wessely was the only participant in the study responsible for hand picking the participants based on an interview.
"Responsible for providing samples and associated data from a well characterised and valuable cohort of subjects: SW."
I wonder if the result was more a matter of participant selection than variations in the science???
Please think more carefully
I find your comments disingenuous, unsolicited and an insult to the memory of those that have died because of ME, in particular Sophia Mirza.
Not only is there 'compelling' evidence of a physical cause, but there is proof. I am not able to comment further, I am simply too unwell. Reply if you wish, remain silent if you must, but I hope others will condemn your comments, whatever their 'context'.
You have also stated that all this is rather 'exciting'. Please be mindful of the fact that for some this is a life or death struggle.
Kind regards, Mark
I find your comments disingenuous, unsolicited and an insult to the memory of those that have died because of ME, in particular Sophia Mirza.
Not only is there 'compelling' evidence of a physical cause, but there is proof. I am not able to comment further, I am simply too unwell. Reply if you wish, remain silent if you must, but I hope others will condemn your comments, whatever their 'context'.
You have also stated that all this is rather 'exciting'. Please be mindful of the fact that for some this is a life or death struggle.
Kind regards, Mark
Holmsey
Senior Member
- Messages
- 286
- Location
- Scotland, UK
I'll check my privacy settings, as far as I'm aware I've not blocked anyone, so if anything it's a case of having a setting which is blocking everyone, sorry for that I'll get if sorted.
And I take the point, I actually agree and at one point did post that it strikes me as absurd to put us all in the same bucket. But in the interests of harmony, and you have to accept now that I have contrary views because I think differently to you, or have had different experiences to you and not because I enjoy it.
I'd like to be out playing Golf, training in Kung Fu, hell I'd settle for Hockey even though I've never played it, I'd do any of them rather than be in the position where I'm drawn, for the good of my future health, to sites like this one. No offence intended to anyone.
But here you go, the one person I've met with a diagnosis of ME/CFS in real life was the wife of a friend, she was bed bound / wheelchair for more than two years, by whatever means she's now fine. On the other hand I live in constant inexplicable (medically) pain, everyday. I load up on pain killers when it's bad, when it's worse than that I'm bed bound, but as soon as I can get up I do, I'm not a Wessley housewife, I have real symptons and have demonstrated measurable viral symptoms on many occassions. I was given this diagnosis after seeing a private specialist in the field, only after having seen three in other fields including ENT and Entorology. If THEY have it wrong, feel free to take it up with them but as far as I can see I've every reason to want to get to the bottom of my symptoms as much as you have so until you can find a way to point us all at the correct sub group site pleas give me some space.
As to annoying people, I'd really love to have a decent debate on the damage done to OUR cause by vilifying the likes of Simon Wessely, but you don't see me starting a thread on it, why, because to many people just don't want someone with different views, they don't want to see how their failure to be fair, reasoned and accurate punished all of us to one degree or another.
Interesting exchange here between one of the authors (Mcclure) and a knowledgable reviewer:
http://www.plosone.org/annotation/l...notation/6bfbac4a-5ace-4a2d-a9bb-60f017ae24d8
http://www.plosone.org/annotation/l...notation/6bfbac4a-5ace-4a2d-a9bb-60f017ae24d8
On another forum, someone with a science background has expressed their opinion that the EDTA used in the blood collecting tubes they use at Imperial is a fairly violent detergent and chelating agent. if this is so, would it have affected the results?
I'm also wondering if this study result was deliberately rushed out ahead of the publicity that's bound to result from Kay Gilderdale's trial for assisted suicide of her severely affected daughter on Jan 12th
I'm also wondering if this study result was deliberately rushed out ahead of the publicity that's bound to result from Kay Gilderdale's trial for assisted suicide of her severely affected daughter on Jan 12th
Esther12
Senior Member
- Messages
- 13,774
Drat - you realised I was cunningly try to slip in an unsolicited insult to Sophia Mirza. Anyway, you're not allowed to condemn my comments now - Bwah-ha-ha!
- Messages
- 28
- Location
- UK
Thankyou Smulan, that's very interesting and does go some way to easing my fears. So I guess that the WPI study tests were more complicated/sensitive than those currently being used by Lombardi then, hence the lower, as of yet, positive findings? Like everyone else I'm just going to have to watch this space and see what develops. Here's hoping.
Dx Revision Watch
Suzy Chapman Owner of Dx Revision Watch
- Messages
- 3,061
- Location
- UK
Stuart wrote:
Stuart, I am not a US resident nor a member of the Lyme community but I was sent this Lyme advocacy related material a week or so ago since it relates to a proposed NEI Center of Excellence in New Jersey, which has some relevance to work that I have been doing.
If I were a resident of the US I would have significant misgivings about the siting of a proposed "NEI Center of Excellence" within the University of Medicine and Dentistry of New Jersey (UMDNJ) Robert Wood Johnson Medical School (RWJMS).
This Lyme advocacy material may also have relevance to those currently seeking to bring the Lyme patient community into the XMRV lobby.
The content, views and opinions expressed in the material highlighted in blue are those of the author, the President of the Lyme Disease Association Inc., and any queries arising out of the content should be addressed to the author.
---------------------------
Subject: [LymeInfo] [advocacy] Remove Lyme Disease from SR133
TO: Everyone across the country
FROM: Lyme Disease Association, Time for Lyme, and CALDA
DATE: December 31, 2009
Sorry for holiday intrusion. We understand that the holidays are a difficult time to ask you to take action, but we are faced with a situation where we must act now to prevent a dangerous setback for the Lyme community.
URGENT ACTION ALERT NEW YEAR'S EVE
TAKE ACTION TODAY, THANKS.
Pat Smith, President
Lyme Disease Association, Inc.
WHEN: On January 4, 2010, the NJ Senate Health Committee intends to go forward with resolution SR 133, which puts Lyme disease, a specific disease with known etiology, in with autoimmune disorders of no known etiology, such as chronic fatigue [sic], fibromyalgia, multiple chemical sensitivity & Gulf War Syndrome.
The proposed resolution for an autoimmune treatment and research center is the result of a behind the scenes effort initiated by a handful of people in the chronic fatigue [sic] community. Their plans to lump Lyme disease in with CFS and disorders of unknown origin has the potential of redirecting current and future funding away from finding a cure for those with active spirochetal and other tick borne infections. Lyme patients and organizations across the country have worked hard over the years to establish, support and promote treatment protocols that will address active tick borne infections. Lyme disease patients will not benefit from a merger with autoimmune disorders, and in fact, could suffer a tremendous set-back if this were to occur.
WHAT: Call or fax the following NJ Senators today. Leave your name and contact info.
Senate Health Committee
[I'm omitting this list of committee members for brevity, but will supply PM, if requested.]
[...]
BACKGROUND: For those who need background information on the issue: In a clandestine behind the scenes movement, the chronic fatigue [sic] community worked to get the introduction and passage of a resolution in the NJ Assembly in May of this year and although they included Lyme disease as one of the autoimmune disorders having an unknown origin, they did not consult with or inform Lyme patients or the Lyme Community of their plans.
The resolution calls for the establishment of a neuroendocrine immune (NEI - a term coined apparently specifically by these advocates) treatment and research center in New Jersey after their plans to have one in Florida were abandoned. The chronic fatigue [sic] advocates were joined by a few Lyme patients who met in NJ to quietly have this passed. One CFS advocate associated with the UMDNJ promoted his personal agenda for a center with what appeared to be the backing of the University of Medicine & Dentistry (UMDNJ).
After we investigated, we found that not only did he not speak for UMDNJ, the UMDNJ is not supporting this resolution nor the creation of the center. The NEI advocates also stated the proposed center had the backing of the CDC & NIH. We checked with these government agencies and the Lyme program officers knew nothing about their plans for a NJ center or their plans to establish additional autoimmune centers in other areas of the country with the same mission.
The Lyme Disease Association is now a partner with the Environmental Protection Agency in its PESP Program!
Pat Smith, President
Lyme Disease Association, Inc.
PO Box 1438
Jackson, NJ 08527
888-366-6611 Toll free info line
732-938-7215 (F)
http://LymeDiseaseAssociation.org/
------------------------------------
The mission of LymeInfo is to keep you informed of issues that might be of interest to Lyme disease patients. Postings are not meant to imply that we agree with the content of all items we distribute.
For Lyme information, see:
http://www.LymeInfo.net
--------------
SR 133 Page 3:
http://www.lymediseaseassociation.org/HR741/SenateNEIDResolution.pdf
16 STATEMENT
17
18 This resolution urges the Governor and respectfully
19 memorializes Congress to encourage the establishment of a research
20 center in New Jersey dedicated to understanding and treating
21 chronic neuroendocrine immune illnesses (NEIDs) such as Chronic
22 Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME),
23 Fibromyalgia, Gulf War illness, Lyme disease and Multiple
24 Chemical Sensitivity Syndrome.
http://www.lymedisease.org/news/lyme_action_alerts/236.html
Click here to see the Senate Resolution that will be voted upon
NJ Senate Resolution SR 133
Click here to see the Letter sent last week to NJ Senators asking for removal of Lyme from resolution Letter to NJ Senate by Lyme Groups
WHO: NJ residents or businesses; also, any Lyme organizations nationwide who have not already signed above letter. No others please at this time, thanks!
WHAT: Call or fax the NJ State Senate sponsors Christopher "Kip" Bateman and Loretta Weinberg.
WHERE: Bateman Phone: (908) 526-3600 Fax: 908-707-4578
Weinberg Phone: (201) 928-0100 Fax: 201-928-0406
WHEN: Start Tuesday October 13, 2009
WHY: To remove Lyme disease from this resolution & from the center
HOW: Call or fax the two senators. Tell each of them
Including Lyme disease with disorders with no known cause will hurt Lyme patients everywhere and prevent them from receiving treatment.
Please remove all references to Lyme disease from the Resolution.
Leave your name, address, contact info (if group, leave group name)
Also, check if either Bateman or Weinberg is your senator Find your NJ State Senator If so, tell him or her you are a constituent.
Proposed NJ bill which "Urges Governor and memorializes Congress to encourage establishment of research center in New Jersey dedicated to chronic neuroendocrine immune disorders." at:
http://www.lymediseaseassociation.org/HR741/SenateNEIDResolution.pdf
==========================================
Lyme Disease Association, Inc.
PO Box 1438, Jackson, New Jersey 08527
888-366-6611 Lymeliter@aol.com 732-938-7215 (Fax)
LymeDiseaseAssociation.org
Re: Proposed Senate Resolution 133, Neuroendocrine Immune Disorders Center
http://www.lymediseaseassociation.org/HR741/NEIDfinal.pdf
Dear Senator:
The national Lyme Disease Association, which has 35 associated organizations nation-wide, is writing to you on behalf of the undersigned organizations in reference to SR-133 (AR-202), which recommends creation of a Center of Excellence in New Jersey dedicated to a new concept of chronic Neuroendocrine Immune Disorders. According to the resolution, these disorders currently include Chronic Fatigue Syndrome/Myalgic Encephalopathy, Fibromyalgia, Gulf War illness, Lyme disease, Multiple Chemical Sensitivity Syndrome, and other environmental illnesses.
The proposed Center would attempt to establish new diagnostic and treatment protocols for these conditions, provide patient care for individuals in the State of New Jersey afflicted with them, and serve as a repository for related autoimmune research data, patient data and publications.
All of the other conditions in the resolution, except Lyme disease, are of unknown origin. As you know, Lyme is an infectious disease with a known cause, the bacterium, Borelia burgdorferi, identified nearly 30 years ago. Therefore, we feel Lyme disease should not be included in this resolution. We ask that it be removed in its entirety before the bill moves forward.
Since Lyme is not an autoimmune disorder, is not in the category of diseases of unknown origin, and already has established diagnostic and treatment protocols to address this complex infectious disease in all stages, we feel it is erroneous to include Lyme in a resolution for a Center simply because it shares some symptoms with unrelated disorders. Others agree.
A study of the regions institutions finds that Harvard University (the "world leader in immunology research, specifically concerning immune defense and inflammation"), the Mayo Clinic, and the recently created John's Hopkins' Autoimmune Disease Research Center do not include Lyme disease on their lists of autoimmune disorders!the latter covering over 60 autoimmune conditions with unknown etiologies. Columbia University has established a research center specifically for Lyme and other tick borne diseases as well as an evaluation service for Lyme disease patients, with no autoimmune diseases included.
2
While we recognize that this proposed Center may prove beneficial for those suffering from the disorders cited, to now categorize Lyme disease as a Neuroendocrine Immune Disorder is not only medically and scientifically incorrect, but it also is contrary to the best interests of Lyme patients, the researchers, and the medical professionals treating those with Lyme disease. For example, many diseases share the symptom of coughing, but treatments for a cold, lung cancer, and tuberculosis are very different. The treatment is based on the underlying cause of the illness, the pathophysiology, and progression of the disease, not the symptoms alone.
Reclassification at this point in time could also set aside evidence gleaned from more than 21,000 peer reviewed scientific articles on Lyme disease describing the causative organism, testing, treatment, modes of dissemination, strain-to-strain variation and more. The pathogenesis of Lyme disease has even been studied in animal models, including non-human primates, demonstrating the persistence of the bacteria. While additional research on Lyme disease is certainly needed, no one has demonstrated that the other diseases under the so-called NEID umbrella share anything in common with the cause, bacteria, pathophysiology, or coinfections that underlie Lyme disease or that treatment approaches appropriate for these diseases would be appropriate for Lyme disease.
Our organizations have made significant progress in educating about Lyme disease, the most prevalent vector-borne disease in the US today. This summer, through our concerted efforts, the US House of Representatives and the Senate Appropriations Committee passed language in the HHS Appropriations bills which includes the terms chronic Lyme disease and persistent infection, recognizing that chronic Lyme is persistent infection, and not a collection of vague symptoms with unknown etiology.
We have highlighted some of the dangers to patients of minimizing Lyme disease by obscuring its bacterial origin and calling it autoimmune. Thus we ask that the words and the concept of Lyme disease be removed from SR-133 before any further action is contemplated. Patients nationwide expect leadership from an informed Senate of the State that, in 2008, contained 12% of all nationally reported case numbers of Lyme disease, equal to 34,850 new victims in New Jersey alone (the CDCs reported total times ten, the CDCs own factor for underreporting).
The national Lyme Disease Association and the undersigned groups respectfully ask for the immediate removal of Lyme disease from the resolution for establishment of a Neuroendocrine Immune Disorders Institute and from any and all current or future plans for such a Center. Your action will help Lyme patients in New Jersey and nationwide receive the appropriate treatment necessary for them to live productive lives. If the Lyme Disease Association can be of further assistance to you regarding any Lyme-related matters, please do not hesitate to contact me. My email is Lymeliter@aol.com and my cell number is 732 713 9083. Thank you.
Sincerely,
Patricia V. Smith
President,
Lyme Disease Association, Inc.
3
[List of co-signatory Lyme organisations omitted for brevity.]
---------------------
The following material is provided by me, Suzy Chapman:
Some within the CI and CS communities say that by including Chemical Injury, Toxic Encephalopathy, and Chemical Sensitivity under the name of "Multiple Chemical Sensitivities" ("MCS") it hurts these patients, too, because chemical injury is not of "unknown origin".
The Robert Wood Johnson Medical School (RWJMS) has a Medically Unexplained Physical Symptoms (MUPS) Center - run by Dr Javier Escobar, MD, in the department of Psychiatry.
Javier Escobar, MD, is the 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).
Dr Escobar is a member of the APA's DSM-V Task Force and he serves as a Task Force liaison to the DSM-V "Somatic Symptom Disorders" Work Group and is said to work closely with this group. He was also a member of the international CISSD Project which was chaired by US Prof Kurt Kroenke and UK Prof Michael Sharpe (Co-PI for the PACE Trials). Several influential members of the CISSD Project now serve on the DSM-V "Somatic Distress Disorders" Work Group.
Dr Escobars DSM-V Task Force member bio and COI disclosure lists the following interests:
http://www.psych.org/MainMenu/Research/DSMIV/DSMV/MeettheTaskForce/JavierEscobarMDMSc.aspx
Principal Investigator and Director of the MUPS Research Center in Primary Care.
Associate Dean for Global Health and Professor of Psychiatry and Family Medicine at the University of Medicine and Dentistry of New JerseyRobert Wood Johnson Medical School.
Member of the National Advisory Committee for the Robert Wood Johnson Foundations Physicians Faculty Scholars Program.
Former senior advisor to the Director of the National Institute of Mental Health (NIMH) in 2004.
Former member of NIMHs National Advisory Mental Health Council.
Former advisor to the World Health Organization, Geneva.
Member of the Food and Drug Administrations Advisory Committee on Psychiatric Drugs.
Standing member of several research review committees for the National Institutes of Health (NIMH, NIDA, and NIA) and the Veterans Administration, and other national task forces.
Dr. Escobar has been an active researcher in the areas of clinical psychopharmacology, psychiatric epidemiology, psychiatric diagnosis, and cross-cultural medicine and Psychiatry. Currently Dr. Escobar is the principal investigator of two projects funded by the National Institute of Mental Health and also collaborates as mentor, co-investigator or consultant in several other NIH-funded projects in the areas of mental disorders in primary care, treatment of somatoform disorders, cross-cultural psychiatry, psychiatric epidemiology and development and mentoring of new psychiatric researchers. He has published more than 200 scientific articles in national and international books and journals.
Dr. Escobars APA DSM-V disclosure statement declares income from or interests in Eli Lilly, Pfizer, BMS, Forest, Wyeth, Johnson & Johnson, Bristol-Meyers Squibb, and American Association of General Psychiatry.
In 2008, a Special Report by Humberto Marin and Javier Escobar, MD: Unexplained Physical Symptoms Whats a Psychiatrist to Do? was published in Psychiatric Times. Vol. 25 No. 9, August 1, 2008
(Free access to full paper here: http://www.psychiatrictimes.com/display/article/10168/1171223 )
The Special Report states:
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.
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 and Total allergy syndrome.
and that:
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 this Special Report, the authors recommend Rather than reassuring patients, unwarranted consultations or tests may feed their belief that they have a serious physical illness.
That fatigue should be addressed with an aerobic exercise program (eg, walking, jogging, biking, swimming) at least 4 days a week but ideally, every day and that clinicians should Discourage secondary gains such as missing work or class or avoiding home chores.
If the most recently published proposals by the DSM-V Somatic Distress Disorders Work Group were to be approved, there will be medical, social and economic implications to the detriment of all patient populations but especially those bundled by many psychiatrists under the so-called Functional Somatic Syndromes (FSS) and Medically Unexplained Syndromes (MUS) umbrella - under which they include ME, CFS, FM, IBS, CI, CS, chronic Lyme disease, GWS and others.
Draft proposals for the revision of DSM-IV are expected to be published by the APA on 20 January.
In April 09, the DSM-V Somatic Distress Disorders Work Group had reported that they were considering a proposal for a new classification (tentatively entitled, complex somatic symptom disorder) to replace the DSM-IV somatoform and related disorders and that the group was exploring the potential for eliminating criteria such as medically unexplained symptoms as the term was considered divisive between doctor and patient and led to mind-body dualism
In a June 09 Journal of Psychosomatic Research Editorial titled The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV a preliminary report, which expanded on the brief report published on the APAs website, DSM-V Work Group Chair, Joel Dimsdale, and fellow Work Group member, Francis Creed reported that by doing away with the controversial concept of medically unexplained, their proposed classification might diminish the dichotomy, inherent in the Somatoform section of DSM-IV, between disorders based on medically unexplained symptoms and patients with organic disease.
The conceptual framework the Work Group were proposing, at that point:
will 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.
When the first draft of DSM-V is released will the Somatic Distress Disorders Work Group be proposing to redefine the category of the so-called somatoform disorders in order that psychiatry will be able to legitimise the application of an additional diagnosis of somatic symptom disorder, to all the above under the pretext of eliminating mind-body dualism, thereby expanding the market for antidepressant and antipsychotic drugs and therapies like Cognitive Behaviour Therapy (CBT) to address the perception of the patients
poor adjustmentdisproportionate distress and disabilitymaladaptive responseunhelpful illness beliefsactivity avoidancepsychological distress in the wake of a general medical conditionpersonality traitspoor coping strategies contributing to worsening of a medical conditionmaintenance of the sick role
and other perceived barriers to adjustment or rehabilitation and thereby reduce the financial burden of providing appropriate medical care and social support?
Will the Somatic Distress Disorders Work Group also be proposing to redefine somatoform disorders in order that psychiatry will be able to apply an additional diagnosis of somatic symptom disorder to all medical conditions, thereby erasing the interface between psychiatry and medicine?
Stuart, I am not a US resident nor a member of the Lyme community but I was sent this Lyme advocacy related material a week or so ago since it relates to a proposed NEI Center of Excellence in New Jersey, which has some relevance to work that I have been doing.
If I were a resident of the US I would have significant misgivings about the siting of a proposed "NEI Center of Excellence" within the University of Medicine and Dentistry of New Jersey (UMDNJ) Robert Wood Johnson Medical School (RWJMS).
This Lyme advocacy material may also have relevance to those currently seeking to bring the Lyme patient community into the XMRV lobby.
The content, views and opinions expressed in the material highlighted in blue are those of the author, the President of the Lyme Disease Association Inc., and any queries arising out of the content should be addressed to the author.
---------------------------
Subject: [LymeInfo] [advocacy] Remove Lyme Disease from SR133
TO: Everyone across the country
FROM: Lyme Disease Association, Time for Lyme, and CALDA
DATE: December 31, 2009
Sorry for holiday intrusion. We understand that the holidays are a difficult time to ask you to take action, but we are faced with a situation where we must act now to prevent a dangerous setback for the Lyme community.
URGENT ACTION ALERT NEW YEAR'S EVE
TAKE ACTION TODAY, THANKS.
Pat Smith, President
Lyme Disease Association, Inc.
WHEN: On January 4, 2010, the NJ Senate Health Committee intends to go forward with resolution SR 133, which puts Lyme disease, a specific disease with known etiology, in with autoimmune disorders of no known etiology, such as chronic fatigue [sic], fibromyalgia, multiple chemical sensitivity & Gulf War Syndrome.
The proposed resolution for an autoimmune treatment and research center is the result of a behind the scenes effort initiated by a handful of people in the chronic fatigue [sic] community. Their plans to lump Lyme disease in with CFS and disorders of unknown origin has the potential of redirecting current and future funding away from finding a cure for those with active spirochetal and other tick borne infections. Lyme patients and organizations across the country have worked hard over the years to establish, support and promote treatment protocols that will address active tick borne infections. Lyme disease patients will not benefit from a merger with autoimmune disorders, and in fact, could suffer a tremendous set-back if this were to occur.
WHAT: Call or fax the following NJ Senators today. Leave your name and contact info.
Senate Health Committee
[I'm omitting this list of committee members for brevity, but will supply PM, if requested.]
[...]
BACKGROUND: For those who need background information on the issue: In a clandestine behind the scenes movement, the chronic fatigue [sic] community worked to get the introduction and passage of a resolution in the NJ Assembly in May of this year and although they included Lyme disease as one of the autoimmune disorders having an unknown origin, they did not consult with or inform Lyme patients or the Lyme Community of their plans.
The resolution calls for the establishment of a neuroendocrine immune (NEI - a term coined apparently specifically by these advocates) treatment and research center in New Jersey after their plans to have one in Florida were abandoned. The chronic fatigue [sic] advocates were joined by a few Lyme patients who met in NJ to quietly have this passed. One CFS advocate associated with the UMDNJ promoted his personal agenda for a center with what appeared to be the backing of the University of Medicine & Dentistry (UMDNJ).
After we investigated, we found that not only did he not speak for UMDNJ, the UMDNJ is not supporting this resolution nor the creation of the center. The NEI advocates also stated the proposed center had the backing of the CDC & NIH. We checked with these government agencies and the Lyme program officers knew nothing about their plans for a NJ center or their plans to establish additional autoimmune centers in other areas of the country with the same mission.
The Lyme Disease Association is now a partner with the Environmental Protection Agency in its PESP Program!
Pat Smith, President
Lyme Disease Association, Inc.
PO Box 1438
Jackson, NJ 08527
888-366-6611 Toll free info line
732-938-7215 (F)
http://LymeDiseaseAssociation.org/
------------------------------------
The mission of LymeInfo is to keep you informed of issues that might be of interest to Lyme disease patients. Postings are not meant to imply that we agree with the content of all items we distribute.
For Lyme information, see:
http://www.LymeInfo.net
--------------
SR 133 Page 3:
http://www.lymediseaseassociation.org/HR741/SenateNEIDResolution.pdf
16 STATEMENT
17
18 This resolution urges the Governor and respectfully
19 memorializes Congress to encourage the establishment of a research
20 center in New Jersey dedicated to understanding and treating
21 chronic neuroendocrine immune illnesses (NEIDs) such as Chronic
22 Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME),
23 Fibromyalgia, Gulf War illness, Lyme disease and Multiple
24 Chemical Sensitivity Syndrome.
http://www.lymedisease.org/news/lyme_action_alerts/236.html
Click here to see the Senate Resolution that will be voted upon
NJ Senate Resolution SR 133
Click here to see the Letter sent last week to NJ Senators asking for removal of Lyme from resolution Letter to NJ Senate by Lyme Groups
WHO: NJ residents or businesses; also, any Lyme organizations nationwide who have not already signed above letter. No others please at this time, thanks!
WHAT: Call or fax the NJ State Senate sponsors Christopher "Kip" Bateman and Loretta Weinberg.
WHERE: Bateman Phone: (908) 526-3600 Fax: 908-707-4578
Weinberg Phone: (201) 928-0100 Fax: 201-928-0406
WHEN: Start Tuesday October 13, 2009
WHY: To remove Lyme disease from this resolution & from the center
HOW: Call or fax the two senators. Tell each of them
Including Lyme disease with disorders with no known cause will hurt Lyme patients everywhere and prevent them from receiving treatment.
Please remove all references to Lyme disease from the Resolution.
Leave your name, address, contact info (if group, leave group name)
Also, check if either Bateman or Weinberg is your senator Find your NJ State Senator If so, tell him or her you are a constituent.
Proposed NJ bill which "Urges Governor and memorializes Congress to encourage establishment of research center in New Jersey dedicated to chronic neuroendocrine immune disorders." at:
http://www.lymediseaseassociation.org/HR741/SenateNEIDResolution.pdf
==========================================
Lyme Disease Association, Inc.
PO Box 1438, Jackson, New Jersey 08527
888-366-6611 Lymeliter@aol.com 732-938-7215 (Fax)
LymeDiseaseAssociation.org
Re: Proposed Senate Resolution 133, Neuroendocrine Immune Disorders Center
http://www.lymediseaseassociation.org/HR741/NEIDfinal.pdf
Dear Senator:
The national Lyme Disease Association, which has 35 associated organizations nation-wide, is writing to you on behalf of the undersigned organizations in reference to SR-133 (AR-202), which recommends creation of a Center of Excellence in New Jersey dedicated to a new concept of chronic Neuroendocrine Immune Disorders. According to the resolution, these disorders currently include Chronic Fatigue Syndrome/Myalgic Encephalopathy, Fibromyalgia, Gulf War illness, Lyme disease, Multiple Chemical Sensitivity Syndrome, and other environmental illnesses.
The proposed Center would attempt to establish new diagnostic and treatment protocols for these conditions, provide patient care for individuals in the State of New Jersey afflicted with them, and serve as a repository for related autoimmune research data, patient data and publications.
All of the other conditions in the resolution, except Lyme disease, are of unknown origin. As you know, Lyme is an infectious disease with a known cause, the bacterium, Borelia burgdorferi, identified nearly 30 years ago. Therefore, we feel Lyme disease should not be included in this resolution. We ask that it be removed in its entirety before the bill moves forward.
Since Lyme is not an autoimmune disorder, is not in the category of diseases of unknown origin, and already has established diagnostic and treatment protocols to address this complex infectious disease in all stages, we feel it is erroneous to include Lyme in a resolution for a Center simply because it shares some symptoms with unrelated disorders. Others agree.
A study of the regions institutions finds that Harvard University (the "world leader in immunology research, specifically concerning immune defense and inflammation"), the Mayo Clinic, and the recently created John's Hopkins' Autoimmune Disease Research Center do not include Lyme disease on their lists of autoimmune disorders!the latter covering over 60 autoimmune conditions with unknown etiologies. Columbia University has established a research center specifically for Lyme and other tick borne diseases as well as an evaluation service for Lyme disease patients, with no autoimmune diseases included.
2
While we recognize that this proposed Center may prove beneficial for those suffering from the disorders cited, to now categorize Lyme disease as a Neuroendocrine Immune Disorder is not only medically and scientifically incorrect, but it also is contrary to the best interests of Lyme patients, the researchers, and the medical professionals treating those with Lyme disease. For example, many diseases share the symptom of coughing, but treatments for a cold, lung cancer, and tuberculosis are very different. The treatment is based on the underlying cause of the illness, the pathophysiology, and progression of the disease, not the symptoms alone.
Reclassification at this point in time could also set aside evidence gleaned from more than 21,000 peer reviewed scientific articles on Lyme disease describing the causative organism, testing, treatment, modes of dissemination, strain-to-strain variation and more. The pathogenesis of Lyme disease has even been studied in animal models, including non-human primates, demonstrating the persistence of the bacteria. While additional research on Lyme disease is certainly needed, no one has demonstrated that the other diseases under the so-called NEID umbrella share anything in common with the cause, bacteria, pathophysiology, or coinfections that underlie Lyme disease or that treatment approaches appropriate for these diseases would be appropriate for Lyme disease.
Our organizations have made significant progress in educating about Lyme disease, the most prevalent vector-borne disease in the US today. This summer, through our concerted efforts, the US House of Representatives and the Senate Appropriations Committee passed language in the HHS Appropriations bills which includes the terms chronic Lyme disease and persistent infection, recognizing that chronic Lyme is persistent infection, and not a collection of vague symptoms with unknown etiology.
We have highlighted some of the dangers to patients of minimizing Lyme disease by obscuring its bacterial origin and calling it autoimmune. Thus we ask that the words and the concept of Lyme disease be removed from SR-133 before any further action is contemplated. Patients nationwide expect leadership from an informed Senate of the State that, in 2008, contained 12% of all nationally reported case numbers of Lyme disease, equal to 34,850 new victims in New Jersey alone (the CDCs reported total times ten, the CDCs own factor for underreporting).
The national Lyme Disease Association and the undersigned groups respectfully ask for the immediate removal of Lyme disease from the resolution for establishment of a Neuroendocrine Immune Disorders Institute and from any and all current or future plans for such a Center. Your action will help Lyme patients in New Jersey and nationwide receive the appropriate treatment necessary for them to live productive lives. If the Lyme Disease Association can be of further assistance to you regarding any Lyme-related matters, please do not hesitate to contact me. My email is Lymeliter@aol.com and my cell number is 732 713 9083. Thank you.
Sincerely,
Patricia V. Smith
President,
Lyme Disease Association, Inc.
3
[List of co-signatory Lyme organisations omitted for brevity.]
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The following material is provided by me, Suzy Chapman:
Some within the CI and CS communities say that by including Chemical Injury, Toxic Encephalopathy, and Chemical Sensitivity under the name of "Multiple Chemical Sensitivities" ("MCS") it hurts these patients, too, because chemical injury is not of "unknown origin".
The Robert Wood Johnson Medical School (RWJMS) has a Medically Unexplained Physical Symptoms (MUPS) Center - run by Dr Javier Escobar, MD, in the department of Psychiatry.
Javier Escobar, MD, is the 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).
Dr Escobar is a member of the APA's DSM-V Task Force and he serves as a Task Force liaison to the DSM-V "Somatic Symptom Disorders" Work Group and is said to work closely with this group. He was also a member of the international CISSD Project which was chaired by US Prof Kurt Kroenke and UK Prof Michael Sharpe (Co-PI for the PACE Trials). Several influential members of the CISSD Project now serve on the DSM-V "Somatic Distress Disorders" Work Group.
Dr Escobars DSM-V Task Force member bio and COI disclosure lists the following interests:
http://www.psych.org/MainMenu/Research/DSMIV/DSMV/MeettheTaskForce/JavierEscobarMDMSc.aspx
Principal Investigator and Director of the MUPS Research Center in Primary Care.
Associate Dean for Global Health and Professor of Psychiatry and Family Medicine at the University of Medicine and Dentistry of New JerseyRobert Wood Johnson Medical School.
Member of the National Advisory Committee for the Robert Wood Johnson Foundations Physicians Faculty Scholars Program.
Former senior advisor to the Director of the National Institute of Mental Health (NIMH) in 2004.
Former member of NIMHs National Advisory Mental Health Council.
Former advisor to the World Health Organization, Geneva.
Member of the Food and Drug Administrations Advisory Committee on Psychiatric Drugs.
Standing member of several research review committees for the National Institutes of Health (NIMH, NIDA, and NIA) and the Veterans Administration, and other national task forces.
Dr. Escobar has been an active researcher in the areas of clinical psychopharmacology, psychiatric epidemiology, psychiatric diagnosis, and cross-cultural medicine and Psychiatry. Currently Dr. Escobar is the principal investigator of two projects funded by the National Institute of Mental Health and also collaborates as mentor, co-investigator or consultant in several other NIH-funded projects in the areas of mental disorders in primary care, treatment of somatoform disorders, cross-cultural psychiatry, psychiatric epidemiology and development and mentoring of new psychiatric researchers. He has published more than 200 scientific articles in national and international books and journals.
Dr. Escobars APA DSM-V disclosure statement declares income from or interests in Eli Lilly, Pfizer, BMS, Forest, Wyeth, Johnson & Johnson, Bristol-Meyers Squibb, and American Association of General Psychiatry.
In 2008, a Special Report by Humberto Marin and Javier Escobar, MD: Unexplained Physical Symptoms Whats a Psychiatrist to Do? was published in Psychiatric Times. Vol. 25 No. 9, August 1, 2008
(Free access to full paper here: http://www.psychiatrictimes.com/display/article/10168/1171223 )
The Special Report states:
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.
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 and Total allergy syndrome.
and that:
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 this Special Report, the authors recommend Rather than reassuring patients, unwarranted consultations or tests may feed their belief that they have a serious physical illness.
That fatigue should be addressed with an aerobic exercise program (eg, walking, jogging, biking, swimming) at least 4 days a week but ideally, every day and that clinicians should Discourage secondary gains such as missing work or class or avoiding home chores.
If the most recently published proposals by the DSM-V Somatic Distress Disorders Work Group were to be approved, there will be medical, social and economic implications to the detriment of all patient populations but especially those bundled by many psychiatrists under the so-called Functional Somatic Syndromes (FSS) and Medically Unexplained Syndromes (MUS) umbrella - under which they include ME, CFS, FM, IBS, CI, CS, chronic Lyme disease, GWS and others.
Draft proposals for the revision of DSM-IV are expected to be published by the APA on 20 January.
In April 09, the DSM-V Somatic Distress Disorders Work Group had reported that they were considering a proposal for a new classification (tentatively entitled, complex somatic symptom disorder) to replace the DSM-IV somatoform and related disorders and that the group was exploring the potential for eliminating criteria such as medically unexplained symptoms as the term was considered divisive between doctor and patient and led to mind-body dualism
In a June 09 Journal of Psychosomatic Research Editorial titled The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV a preliminary report, which expanded on the brief report published on the APAs website, DSM-V Work Group Chair, Joel Dimsdale, and fellow Work Group member, Francis Creed reported that by doing away with the controversial concept of medically unexplained, their proposed classification might diminish the dichotomy, inherent in the Somatoform section of DSM-IV, between disorders based on medically unexplained symptoms and patients with organic disease.
The conceptual framework the Work Group were proposing, at that point:
will 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.
When the first draft of DSM-V is released will the Somatic Distress Disorders Work Group be proposing to redefine the category of the so-called somatoform disorders in order that psychiatry will be able to legitimise the application of an additional diagnosis of somatic symptom disorder, to all the above under the pretext of eliminating mind-body dualism, thereby expanding the market for antidepressant and antipsychotic drugs and therapies like Cognitive Behaviour Therapy (CBT) to address the perception of the patients
poor adjustmentdisproportionate distress and disabilitymaladaptive responseunhelpful illness beliefsactivity avoidancepsychological distress in the wake of a general medical conditionpersonality traitspoor coping strategies contributing to worsening of a medical conditionmaintenance of the sick role
and other perceived barriers to adjustment or rehabilitation and thereby reduce the financial burden of providing appropriate medical care and social support?
Will the Somatic Distress Disorders Work Group also be proposing to redefine somatoform disorders in order that psychiatry will be able to apply an additional diagnosis of somatic symptom disorder to all medical conditions, thereby erasing the interface between psychiatry and medicine?
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Thanks for this Garcia. Yes very interesting exchange. I hope it continues on, and it's good to see that McClure is at least responding to questions. One bit that jumped out at me was where it said that Kings were responsible for preparing the DNA and not those at Imperial. I wonder if that could lead to doubts about the vaildity of the findings?
Dx Revision Watch
Suzy Chapman Owner of Dx Revision Watch
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Responses from Dr Charles Shepherd (ME Association)
I contacted Neil Riley, Chair, ME Association Board of Trustees, with some questions around the Imperial College London XMRV study about which nothing was known, publicy, until it was published earlier this week.
These are the responses:
From Neil Riley, 7 January 2009
Dear Suzy,
Nice to hear from you.
In the context of the unoffical summary to which you refer the answers - given in red by Dr. Shepherd - to your questions are as follows:-
Four questions for the MEA:
1] How long has Dr Charles Shepherd been aware of the McClure/Wessely study that has been carried out at Imperial College London and which was published, yesterday?
I was told about it sometime during December. The name mentioned in connection with this study was Jonathan Webber (imperial College) and I did not know of the involvement with Wessely. I heard Webber's name from one of the virology people I have been talking to about XMRV.
2] Professor Chris Mathias, of Imperial College London (where the study was carried out), was listed as a participant in the MRC's December CFS/ME Research Workshop.
Was the McClure/Wessely ICL study discussed at the MRC's December CFS/ME Research Workshop?
I cannot recall it being mentioned during the formal MRC sessions. It may well have been discussed informally by some of those who were present but I was not involved in any of those discussions.
3] If Dr Shepherd was aware prior to 5 January, why has this McClure/Wessely study not previously been noted?
The first I knew about publication of the Imperial Colege paper was when I was sent it with a press release on the day before it was published
4] To which study was Dr Shepherd referring when he wrote:
"It looks as though there may even be some early results from replication studies before the end of the year."
Nothing specific - just a hunch that one of the replicaton studies would get published before the end of the year.
Neil [Riley]
----------------
Suzy
I contacted Neil Riley, Chair, ME Association Board of Trustees, with some questions around the Imperial College London XMRV study about which nothing was known, publicy, until it was published earlier this week.
These are the responses:
From Neil Riley, 7 January 2009
Dear Suzy,
Nice to hear from you.
In the context of the unoffical summary to which you refer the answers - given in red by Dr. Shepherd - to your questions are as follows:-
Four questions for the MEA:
1] How long has Dr Charles Shepherd been aware of the McClure/Wessely study that has been carried out at Imperial College London and which was published, yesterday?
I was told about it sometime during December. The name mentioned in connection with this study was Jonathan Webber (imperial College) and I did not know of the involvement with Wessely. I heard Webber's name from one of the virology people I have been talking to about XMRV.
2] Professor Chris Mathias, of Imperial College London (where the study was carried out), was listed as a participant in the MRC's December CFS/ME Research Workshop.
Was the McClure/Wessely ICL study discussed at the MRC's December CFS/ME Research Workshop?
I cannot recall it being mentioned during the formal MRC sessions. It may well have been discussed informally by some of those who were present but I was not involved in any of those discussions.
3] If Dr Shepherd was aware prior to 5 January, why has this McClure/Wessely study not previously been noted?
The first I knew about publication of the Imperial Colege paper was when I was sent it with a press release on the day before it was published
4] To which study was Dr Shepherd referring when he wrote:
"It looks as though there may even be some early results from replication studies before the end of the year."
Nothing specific - just a hunch that one of the replicaton studies would get published before the end of the year.
Neil [Riley]
----------------
Suzy
Holmsey
Senior Member
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It's my understanding that the history to the Imperial's study was this.
Following the WPI's publication Imperial contacted the clinic still run by Simon Wessely enquiring if they had samples. As the leading UK authority on retroviruses they were apparently already well informed regarding XMRV and were genuinely excited at the prospect of doing research.
The clinic had frozen samples and simply forwarded these as per the request. Following the study, neither Simon Wessely or anyone else involved in providing the samples had any power or censorship, and with respect to results these would have been published independently regardless of the prevelance found. Apparenlty it was said at the press conference that this is just another paper and that there will be many more.
From input to this thread it seems 'correct' that different labs should use differences in techniques, that this is how the load is shared and a complete picture produced. It seems to me that at worst this study simply gives clues to other labs on what to try or what not to try as research most assuredly continues.
I wasn't particularly taken with the sideswipes at WPI, I thought them to be unnecessarly in an as yet unconcluded matter, likewise I found the WPI's retort unprofessional. Last I knew, here in the UK, I was suffering from a cronic neuralogical condition, and as such my doctor offered the
H1N1 vaccinne, I'm sure he would not have done so if he'd taken the WPI view that I'm a psyc patient. As an earlier posted noted, we need co-operation not competition and certainly not mud slinging.
Following the WPI's publication Imperial contacted the clinic still run by Simon Wessely enquiring if they had samples. As the leading UK authority on retroviruses they were apparently already well informed regarding XMRV and were genuinely excited at the prospect of doing research.
The clinic had frozen samples and simply forwarded these as per the request. Following the study, neither Simon Wessely or anyone else involved in providing the samples had any power or censorship, and with respect to results these would have been published independently regardless of the prevelance found. Apparenlty it was said at the press conference that this is just another paper and that there will be many more.
From input to this thread it seems 'correct' that different labs should use differences in techniques, that this is how the load is shared and a complete picture produced. It seems to me that at worst this study simply gives clues to other labs on what to try or what not to try as research most assuredly continues.
I wasn't particularly taken with the sideswipes at WPI, I thought them to be unnecessarly in an as yet unconcluded matter, likewise I found the WPI's retort unprofessional. Last I knew, here in the UK, I was suffering from a cronic neuralogical condition, and as such my doctor offered the
H1N1 vaccinne, I'm sure he would not have done so if he'd taken the WPI view that I'm a psyc patient. As an earlier posted noted, we need co-operation not competition and certainly not mud slinging.
fresh_eyes
happy to be here
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Hi Holmsey. That's interesting. Where did you get this information?
Hysterical Woman
Senior Member
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Hi Sparklehorse,
I am not at the end of this thread yet so someone else might have mentioned this to you. Please keep in mind that the researchers in the XMRV study admitted that they used blood from the sickest of the sick. I believe this is common practice in projects of this type. The current public testing by VIP is using blood from people who are paying to see if they have the retrovirus in their systems. Because the definition of what CFS seems to depend on what country you live in, what the latest beliefs of the CDC are, your personal doc, etc. etc. it is tough to know whether one has CFS or not. We can only hope that the current research focus will continue to try to find some answers for us.
Good Luck,
Maxine
fresh_eyes
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@ MEAgenda: Suzy, I want to say again how much I appreciate your depth of knowledge about...well, everything! Thank you so much for pointing out that Dr Escobar, director of the New Jersey university that is slated to be home to the new NEI Center of Excellence, is a psychiatrist with a Wessely-ite view of CFS. Definitely cause for concern.
Alice Band
PWME - ME by Ramsay
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Holmsley and all,
There is something very suspicious and unprofessional about this.
Imperial College is very close to me. They didn't need to approach Simon Wessely for blood samples. They should have done their own patients. I am seen under the umbrella of "Imperial College".
Simon Wessely is from a different hospital and not connected to Imperial College at all. So they went "out of area" and deliberately chose to do this.
Imperial College had their own patients to use for a research project. There are seen at a clinic and we have been used for another research project (Dr Kerr's gene expression).
They could have had taken fresh blood samples from a group already studied, defined etc.
Imperial College chose not to do this. My own personal opinion is that they made a mistake.
When sending blood samples to VIP dx in Reno they insist on fresh blood samples. Imperial College chose to use frozen ones from a doctor who has a known psychiatric bias instead of fresh samples from their own CFS clinic.
It may not have been a deliberrate error (psychiatric patients instead) but it does sound like a poor decision and an indication of their poor judgement and haste.
There is something very suspicious and unprofessional about this.
Imperial College is very close to me. They didn't need to approach Simon Wessely for blood samples. They should have done their own patients. I am seen under the umbrella of "Imperial College".
Simon Wessely is from a different hospital and not connected to Imperial College at all. So they went "out of area" and deliberately chose to do this.
Imperial College had their own patients to use for a research project. There are seen at a clinic and we have been used for another research project (Dr Kerr's gene expression).
They could have had taken fresh blood samples from a group already studied, defined etc.
Imperial College chose not to do this. My own personal opinion is that they made a mistake.
When sending blood samples to VIP dx in Reno they insist on fresh blood samples. Imperial College chose to use frozen ones from a doctor who has a known psychiatric bias instead of fresh samples from their own CFS clinic.
It may not have been a deliberrate error (psychiatric patients instead) but it does sound like a poor decision and an indication of their poor judgement and haste.
Esther12
Senior Member
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I've been unable to comment on this site - it wants me to request an authentication e-mail to register but I can't see how.
The piece seems honest but misleading, and it would be nice to nudge things in a fairer direction.
Esther12
Senior Member
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I think it's likely that they wanted to be as quick as possible. If that caused problems, more careful studies should pick it up.
Combined with them saying that the WPI were irresponsible to release results, I wouldn't be surprised if they did think that the XMRV news would encourage patients to medicalise their symptoms, and be less accepting of the GET/CBT they think is useful. I don't think that this would lead to them fabricating results, but it might explain their tone and desire to get their conflicting results out as quickly as possible, perhaps without being as thorough as we'd like.
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Suzy Chapman Owner of Dx Revision Watch
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Is the paper saying that the samples were stored samples that had already been taken for use in two previous studies published in 2007, and In Press in 2009? Or is the paper saying the cohort was assembled from a pool of patients who had already taken part in two previous studies but who were still attending clinic sessions?
Extract PLoS paper:
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0008519
[...]
Methods
Patients
All patients gave written informed consent for the use of their DNA to test aetiological theories of CFS, and the study was approved by the South London and Maudsley NHS Trust Ethics Committee. The study recruited 186 patients (62% female, age range 1970, mean 39.6611.3years) from consecutive referrals to the CFS clinic at Kings College Hospital, London. All patients had undergone medical screening to exclude detectable organic illness, including a minimum of physical examination, urinalysis, full blood count, urea and electrolytes, thyroid function tests, liver function tests, 9 a.m. cortisol and ESR. Patients were interviewed using a semi-structured interview for CFS [9] to determine whether they met international consensus criteria for CFS. All subjects met the CDC criteria [10]; patients with the Fukuda specified exclusionary psychiatric disorders, or somatisation disorder (as per DSM-IV), were not included.
The patient set studied is a well-characterised and representative sample of CFS patients who have been described previously: all were routine clinic attendees, referred within the UK National Health Service, who had taken part in prior studies of neuroendocrine functioning [11] and/or of cognitive behaviour therapy [12]. As is typical of the patients seen in this tertiary care centre, they were markedly unwell. Few were working, and 19% were members of patient support groups for CFS/ME [1214]. The levels of fatigue in this sample were high (mean Chalder Fatigue Scale, 26.365.4) [15], as were levels of disability (mean Work and Social Adjustment Scale, total score 28.267.2) [16]. The mean GHQ-12 score [17] was 19.768.1. Patients had been unwell for a median of 4.0 y (range 128 y). Of note was that 45% said their illness definitely related to a viral illness and 45% said it might relate to a viral illness.
Overall, we conclude that this sample is typical of CFS patients seen in specialist clinical services in the UK. We also know from collaborative studies that our patients resemble those seen in other specialist CFS services in the United States and Australia [18].
Refs:
11. Roberts AD, Charler M, Papadopoulos AS, Wessely S, Chalder T, et al. (2009)
Does hypocortisolism predict a poor response to cognitive behavioural therapy in chronic fatigue syndrome? Psychological Medicine. In press.
12. Quarmby L, Rimes KA, Deale A, Wessely S, Chalder T (2007) Cognitive behaviour therapy for chronic fatigue syndrome: comparison of outcomes within and outside the confines of a randomised controlled trial. Behaviour Research & Therapy 45: 108594.
Extract PLoS paper:
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0008519
[...]
Methods
Patients
All patients gave written informed consent for the use of their DNA to test aetiological theories of CFS, and the study was approved by the South London and Maudsley NHS Trust Ethics Committee. The study recruited 186 patients (62% female, age range 1970, mean 39.6611.3years) from consecutive referrals to the CFS clinic at Kings College Hospital, London. All patients had undergone medical screening to exclude detectable organic illness, including a minimum of physical examination, urinalysis, full blood count, urea and electrolytes, thyroid function tests, liver function tests, 9 a.m. cortisol and ESR. Patients were interviewed using a semi-structured interview for CFS [9] to determine whether they met international consensus criteria for CFS. All subjects met the CDC criteria [10]; patients with the Fukuda specified exclusionary psychiatric disorders, or somatisation disorder (as per DSM-IV), were not included.
The patient set studied is a well-characterised and representative sample of CFS patients who have been described previously: all were routine clinic attendees, referred within the UK National Health Service, who had taken part in prior studies of neuroendocrine functioning [11] and/or of cognitive behaviour therapy [12]. As is typical of the patients seen in this tertiary care centre, they were markedly unwell. Few were working, and 19% were members of patient support groups for CFS/ME [1214]. The levels of fatigue in this sample were high (mean Chalder Fatigue Scale, 26.365.4) [15], as were levels of disability (mean Work and Social Adjustment Scale, total score 28.267.2) [16]. The mean GHQ-12 score [17] was 19.768.1. Patients had been unwell for a median of 4.0 y (range 128 y). Of note was that 45% said their illness definitely related to a viral illness and 45% said it might relate to a viral illness.
Overall, we conclude that this sample is typical of CFS patients seen in specialist clinical services in the UK. We also know from collaborative studies that our patients resemble those seen in other specialist CFS services in the United States and Australia [18].
Refs:
11. Roberts AD, Charler M, Papadopoulos AS, Wessely S, Chalder T, et al. (2009)
Does hypocortisolism predict a poor response to cognitive behavioural therapy in chronic fatigue syndrome? Psychological Medicine. In press.
12. Quarmby L, Rimes KA, Deale A, Wessely S, Chalder T (2007) Cognitive behaviour therapy for chronic fatigue syndrome: comparison of outcomes within and outside the confines of a randomised controlled trial. Behaviour Research & Therapy 45: 108594.
Alice Band
PWME - ME by Ramsay
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Esther,
That still doesn't explain their decision. It smacks of bias, haste and very bad decision making.
You made a good point there - a genuine Retro-viral scientist wouldn't care about patients "medicalising their symptoms".
They would want to find/not find the virus as applicable. That means choosing the right patient population, the right blood samples method and the right PCR technique.
We could have got in any work-experience students to do this job under orders from their NHS bosses. Truly interested and experienced scientists should do better. I wouldn't get away with this in my ex-job / profession.
Not bodge the job to get something in a medical journal as quickly as possible.
That still doesn't explain their decision. It smacks of bias, haste and very bad decision making.
You made a good point there - a genuine Retro-viral scientist wouldn't care about patients "medicalising their symptoms".
They would want to find/not find the virus as applicable. That means choosing the right patient population, the right blood samples method and the right PCR technique.
We could have got in any work-experience students to do this job under orders from their NHS bosses. Truly interested and experienced scientists should do better. I wouldn't get away with this in my ex-job / profession.
Not bodge the job to get something in a medical journal as quickly as possible.