XMRV Retrovirus Round up 20: Reno Gazette, NYT Letters

XMRV Retrovirus   Whittemore Peterson Institute   Science   Mikovits   Peterson   Chronic Fatigue Syndrome

XMRV Retrovirus: Round up 20: Reno Gazette, NYT Letters

Any additional material around XMRV compiled over the next few days will be added to the top of Round up 20

WordPress Shortlink: http://wp.me/p5foE-2hl

For initial Whittemore Peterson Press Release, NIH (National Institutes of Health) News Release, Science paper go here: http://wp.me/p5foE-272

Click here for all previous XMRV Round ups and postings in reverse date order: http://meagenda.wordpress.com/category/xmrv/

 

CFSAC meeting 29-30 October 2008

http://www.hhs.gov/advcomcfs/meetings/presentations/091029.html

PDFs of some of  the Public Testimonies given on 29 and 30 October, in person or via phone link and PDFs of all Written Testimony Received Prior to the Meeting Date are now available.

Chronic Fatigue Syndrome Advisory Committee (CFSAC) Presentations
October 29-30, 2009

Room 800, Hubert H. Humphrey Building
200 Independence Avenue, S.W.
Washington, D.C. 20201

Presentation

Dr David Bell’s PowerPoint slides: http://www.hhs.gov/advcomcfs/meetings/agendas/bell_factitious_102909.ppt

Public Testimony
Thursday, October 29, 2009

List of those given testimony plus some PDFs

Friday, October 30, 2009

List of those given testimony plus some PDFs

Written Testimony Received Prior to the Meeting Date

26 PDFs

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NIH Videocasts of CFSAC meeting

Videocasts of the entire proceedings will be available shortly from the NIH wesbite. I will post the links for these once these are online in a separate posting (RealPlayer required): http://videocast.nih.gov/PastEvents.asp

Dr David Bell’s presentation PowerPoint Slides can be viewed here:

http://www.hhs.gov/advcomcfs/meetings/agendas/bell_factitious_102909.ppt

YouTubes of CFSAC meeting

Clips of Dr Dan Peterson’s presentation and Annette Whittemore: http://www.youtube.com/user/Khalyal

Also on this channel plus some patient testimonies: http://www.youtube.com/user/luminescentfeeling

Dr Dan Peterson presentation in 11 parts here: http://www.youtube.com/user/luminescentfeeling#p/u/11/80yKflt0tcA

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Media

3] Reno Gazette Journal  http://www.rgj.com/

http://www.rgj.com/article/20091101/NEWS/911010346/1321

Though syndrome brings hardship, family tries to live fully, positively

By Lenita Powers • lpowers@rgj.com • November 1, 2009

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2] Reno Gazette Journal  http://www.rgj.com/

http://www.rgj.com/article/20091101/NEWS/911010345/1321

Patients hope for vaccines; researchers eye links to other diseases

By Lenita Powers • lpowers@rgj.com • November 1, 2009

As the news has spread that a retrovirus has been linked to Chronic Fatigue Syndrome, people around the world who suffer from the illness and similar neuro-immune diseases have been thanking the researchers at Whittemore-Peterson Institute for Neuro-Immune Disease in Reno for giving them new hope.

“I used to describe having the syndrome as being akin to the sound of one hand clapping,” a woman wrote from London. “Well, now all those hands are coming together in applause all around the world. I hope all you brilliant people at the WPI can hear us cheering.”

Read full article here

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1] Reno Gazette Journal http://www.rgj.com/

Medical breakthrough puts Reno in spotlight
Medical study buoys patients, earns scientists global acclaim

By Lenita Powers • lpowers@rgj.com  • October 31, 2009

Judy Mikovits remembers that “eureka” moment when she realized that she and her team of researchers at the Whittemore-Peterson Institute in Reno had discovered a new retrovirus that could lead to a possible treatment, even a vaccine, to combat Chronic Fatigue Syndrome.

“It was January 22, and we were in a San Diego restaurant called the Yard House,” said Mikovits, who had gone there with fellow scientist Vincent Lombardi to present the results of their research to Frank Ruscetti and Robert Silverman, two of the world’s leading virologists.

“We kept waiting for them to say something,” Mikovits said. “I was nauseous. Bob (Silverman) waited a long a time, and then he looked up and said, ‘Well, this is going to change their world.’”

And it has. 

Read full article (which is a long one) here

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New York Times Letters

Letters

A New Health Policy for Chronic Fatigue Syndrome

Published: October 31, 2009
 

To the Editor:

Re “A Case of Chronic Denial,” by Hillary Johnson (Op-Ed, Oct. 21), about chronic fatigue syndrome:

The Centers for Disease Control and Prevention estimates that one million to four million people in the United States have chronic fatigue syndrome, with approximately 80 percent of these cases undiagnosed. Furthermore, the C.D.C. has indicated that chronic fatigue syndrome is a debilitating illness with a yearly economic impact of at least $9.1 billion.

Despite its prevalence, morbidity and economic impact, chronic fatigue syndrome ranks near the bottom in federal research funding of more than 200 diseases and conditions.

In 25 years of research on chronic fatigue syndrome, no demonstrable progress has been made in identifying objective criteria for diagnosis and treatment. Nor have physicians been properly educated to care for these patients.

The illness continues to be stigmatized as frank malingering or a nonserious psychiatric disorder. It is time for a thorough overhaul of public health policy toward this debilitating illness.

Fred Friedberg
Stony Brook, N.Y., Oct. 23, 2009

The writer is president of the International Association for Chronic Fatigue Syndrome.

•

To the Editor:

I have long been struck by how similar chronic fatigue syndrome (or myalgic encephalomyelitis) is to the pathologies of gulf war syndrome, the illnesses of people subjected to low-level radiation exposure, and the maladies that plague communities near coal operations.

It seems clear that major shocks to the human system — particularly the immune, neurological and endocrine systems — can be delivered through toxic exposure, infectious agents and other extreme stressors. And once these systems are hit with sufficiently large impact, they can set off broad systemic collapse. Think of it as the human body version of a nuclear plant meltdown.

Whatever the findings of continuing research, adequate treatment mandates a health care system that provides far more effective management and active collaboration among consultant specialists than the current United States system typically provides.

Michel Lee
Scarsdale, N.Y., Oct. 21, 2009

The writer, a lawyer, is a senior adviser to the public interest organization Public Health and Sustainable Energy and formerly served on a panel of lawyers and doctors concerned about the inadequacy of regulatory standards to protect public health from the effects of environmental toxins.

—————-

Commentary

Jean Harrison reports via Co-Cure

30 October 2009

Letters from CDC in ‘92 advising against blood donation

http://www.cfs-news.org/joan.htm

These letters, on the site created by Roger Burns, are to a woman named Joan Irvine. They are from the CDC. The more damning of the two is from Dr Reeves; he cautions her against donating blood because of a possible infectious agent.

It seems appropriate, in light of today’s proceedings [Ed: CFSAC meeting 29-30 October] and those anticipated tomorrow ­ that these letters be revisited.

Joan was a tireless campaigner and a charming writer. She eventually took her own life in September of 1996, a night hard impossible to forget for those of us on the old CFS-L & CFIDS-L lists who had come to know her.

I hope that these can be well used.

In memory of Joan,

Jean Harrison

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The Definition Petition

Petition webpage: http://CFSdefinitionpetition.notlong.com
i.e. http://www.ipetitions.com/petition/empirical_defn_and_CFS_research

If you haven’t already signed it – sign the CFS Definition Petition today at: http://CFSdefinitionpetition.notlong.com

XMRV Retrovirus: Notice from Dr David Bell Lyndonville News; Article by Dr Paul Cheney MD

XMRV Retrovirus: Notice from Dr David Bell, Lyndonville News; Article by Dr Paul R. Cheney MD, PhD plus Media Round up 9

WordPress Shortlink: http://wp.me/p5foE-2aQ

Media Round up

New Scientist    8 October 2009 by Ewen Callaway

http://www.newscientist.com/article/dn17947-chronic-fatigue-syndrome-linked-to-cancer-virus.html

Chronic fatigue syndrome linked to ‘cancer virus’

“Chronic fatigue syndrome, the debilitating condition once dismissed as “yuppie flu”, has been linked to a virus that is also common in people with a certain type of prostate cancer.

“It’s still not clear if the virus, called XMRV, causes chronic fatigue syndrome (CFS), or is just more common in people with the disorder. But the discovery is sure to reignite the debate over whether CFS is fundamentally a psychological condition or a physiological one….”   Full article

 

A much briefer report appears in this week’s New Scientist print edition Magazine issue 2730

New Scientist

Upfront  New Scientist  | Page 6  |  17 October 2009

Virus in the frame  (headline used in print version)

“ALL in the mind, or all in a virus?

“Chronic fatigue syndrome, once dismissed as “yuppie flu”, has been linked to a virus that is also common in people with a certain type of prostate cancer.

“It’s still not clear if the virus, called XMRV, causes chronic fatigue syndrome (CFS), or is just more common in people with the disorder. But the discovery has reignited debate over whether CFS is psychological or physiological…”   Full article

Online copy of print version at:

14 October 2009

http://www.newscientist.com/article/mg20427302.900-chronic-fatigue-syndrome-linked-to-cancer-virus.html

NB: The online copy of the print edition report uses the same headline as the longer article published online on 8 October: Chronic fatigue syndrome linked to ‘cancer virus’

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Pro Health   15 October 2009

http://www.prohealth.com/library/showarticle.cfm?libid=14930

Don’t Miss the New York Times Q&A on XMRV by Dr. Klimas

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New York Times Consults Blog  15 October 2009

http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/

Readers Ask: A Virus Linked to Chronic Fatigue Syndrome
By The New York Times

—————–

Update on Science Friday: Tom Kindlon reports via Co-Cure

The website http://www.sciencefriday.com/  lists it in the Hour One slot (i.e. 2-3pm EST).

It’s item 3 of 3 in that slot which may means its on between 2.30-3pm.

Don’t forget one can ring in to ask a question (and maybe make a point at the same time!?)

 

Science Friday    16 October 2009

http://www.sciencefriday.com/program/archives/200910163

A Virus and Chronic Fatigue? (broadcast Friday, October 16th, 2009)

Science Friday is a weekly science talk show, broadcast live over public radio stations nationwide from 2-4pm Eastern time as part of NPR’s ‘Talk of the Nation’ programming. Each week, we focus on science topics that are in the news and try to bring an educated, balanced discussion to bear on the scientific issues at hand.

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VIDEO Klimas on XMRV Added by Dan Moricoli    15 October 2009

http://cfsknowledgecenter.ning.com/video/klimas-on-xmrv

Taped Oct. 12th 2009 in her office. Dr Klimas talks about XMRV, what it means, what’s next and what you can do.

[Ed: You may need a membership of CFS Knowledge Centre network to access the video.]

—————–

From Co-Cure mailing list    14 October 2009

DFW CFIDS reports:

Cheney, Peterson, Defreitas – history of the search for a retroviral link to CFS

(Dr. Paul Cheney asked me to post the following article written by him.)

A retrovirus XMRV is linked to Chronic Fatigue Syndrome
Paul R. Cheney MD, PhD
The Cheney Clinic, Asheville, NC
October 2009
www.cheneyresearch.com
www.cheneyclinic.com  

Recently published in Science (2009)[i] out of the Whittemore-Peterson Institute in Reno, NV along with The Cleveland Clinic and the National Cancer Institute (NIH) is the first convincing association of an isolated retrovirus with CFS. The gammaretrovirus XMRV was only recently discovered in 2007 at the Cleveland Clinic[ii] and cultured out of prostate cancer tissue from prostate cancer victims who had a rare mutation in the anti-viral RNase-L pathway. CFS patients also have unusual alterations in the same anti-viral pathway (1997)[iii] though different in its detail and far less rare.

Dan Peterson MD, a long time resident of Incline Village, NV (Lake Tahoe) and I worked for over eight years (1984 1992) to link CFS to a retrovirus. Dan first sent five CFS patient samples to Specialty Labs in 1985 to test for HTLV-1 and 4 of 5 were positive. We did this due to incredible disturbances on flow cytometry of peripheral mononuclear cells producing elevated CD4/CD8 ratios due to CD8 depletion as well as scatter patterns (debris patterns) that the laboratory flow cytometrist said she had only seen in HIV infections.

A radiologist at UC San Diego, on review, said our MRI brain scans done on CFS cases showing UBO’s (1988)[iv], looked exactly likes AIDS cases. Repeat testing was negative for HTLV-1 and Dr. James Peters of Specialty Labs suggested these CFS patients might have a cross reacting and novel retrovirus that looks like HTLV-1.

In 1986, I called the NCI and Robert Gallo MD, head of the foremost retrovirology laboratory in the world at the time, accepted Lake Tahoe samples for a year resulting in the association of an HHV-6A strain with Lake Tahoe CFS cases (1992)[v], only previously linked to HIV infection.

While practicing in Charlotte, NC and based on continued evidence of unusual immune disturbances by flow cytometry including CD4 depletion (ICL) in 15% of CFS patients which was investigated in my clinic and dismissed by the CDC in 1991 and continued high RNase-L activity (1994)[vi], I contacted Elaine DeFreitas PhD at the Wistar Institute in Philadelphia at the University of Pennsylvania who ultimately found HTLV-II-like genes associated with CFS (1991)[vii]. Her work was unfortunately assaulted by the CDC that claimed either an endogenous RV sequence that lighted up in cases and controls using her primers (per Dr. J.W. Gow) or null responses to cases and controls (per CDC scientist).

Elaine argued that these two scientists with diametrically opposing results manipulated the magnesium concentration which affects the primer stringency and got whatever result they wanted, to make their opposite claims. Her proposal to fly CDC scientists to Philadelphia to run the assays side by side with the her in her lab to see if these results could be replicated was dismissed by the CDC based on “lack of funds to buy plane tickets” from Atlanta to Philadelphia. Dr. Gow would later publish his opinion (1992)[viii]. Left unfunded by senior administrators at the NIH and the CDC, the search for a retroviral link in CFS dissipated and was lost until Judy Mikovits PhD, operating out of the independent Whittemore-Peterson Institute, revived the long search. I congratulate her and the Whittemore-Peterson Institute.

The finding of antibody or active virus in 95% of CFS and 4% of controls is a result that argues for causality, in my opinion, especially with the associated RNase-L[ix] corruption and NK functional impairment[x] that might predict such an infection. This novel retrovirus could easily shift the redox state just like HIV as has been published in (2001)[xi] and (1995)[xii] and induce all manner of associated pathogens as seen in CFS[xiii],[xiv],[xv],[xvi],[xvii]. A redox shift could ultimately corrupt the gut ecology and create P450 decoupling based on NADPH depletion observed in CFS and lead to environmental illness as well.

Time will tell but I think Dr. Mikovits is right to suspect causality. I also think this virus is infectious with at least ten million Americans infected who appear healthy and perhaps another 4 million Americans or more with CFS as recently estimated by the CDC (2007)[xviii]. However, disease expression may be more limited causing the illusion that it is not infectious. Furthermore, there may be other diseases that are similar and dissimilar to CFS that are associated with if not caused by XMRV.

————————————————————————

[i] Vincent C. Lombardi,1* Francis W. Ruscetti,2* Jaydip Das Gupta,3 Max A. Pfost,1 Kathryn S. Hagen,1 Daniel L. Peterson,1 Sandra K. Ruscetti,4 Rachel K. Bagni,5 Cari Petrow-Sadowski,6 Bert Gold,2 Michael Dean,2 Robert H. Silverman,3 Judy A. Mikovits1† “Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome” Science – epub ahead of publication – 8 October 2009, pp 4-10, science.1179052, www.sciencexpress.org

[ii] Dong B, Kim S, Hong S, Das Gupta J, Malathi K, Klein EA, Ganem D, Derisi JL, Chow SA, Silverman RH “An infectious retrovirus susceptible to an IFN antiviral pathway from Human prostate tumors” (2007) Proc Natl Acad Sci USA 104:1655–1660.

[iii] Suhadolnick RJ, Peterson DL, O’Brien K, Cheney PR, Herst CVT, Reichenbach NL, Kon N, Horvath SE, Iacono KT, Adelson ME, De Meirleir K, De Becker P, Charubala R and Pfleiderer W “Biochemical Evidence for a Novel Low Molecular Weight 2-5A-Dependent RNase L in Chronic Fatigue Syndrome” Journal of Inteferon and Cytokine Research 17:377-385 (1997)

[iv] Buchwald D, Biddle R, Josesz FA, Kikinis R, Cheney PR, Peterson D, Komaroff AL, “Central Nervous System Abnormalities on Magnetic Resonance Imaging (MRI) in an Outbreak of Chronic Fatigue Syndrome (CFS)”, Presented at the American Federation for Clinical Research Annual Meeting, San Diego, CA 1988

[v] Buchwald,D., Cheney, PR., Peterson,DL., Henry,B., Wormsley,SB., Geiger,A., Ablashi,DV., Salahuddin,Z., Saxinger,C., Biddle,R., Kikinis,R., Jolesz,FA., Folks,T., Balachandran,N., Peter,JB., Gallo,RC.,and Komaroff,AL., “A Chronic Illness Characterized by Fatigue, Neurologic and Immunologic Disorders, and Active Human Herpesvirus-6 Infection”, Annals of Internal Medicine, Jan. 15, 1992:11 (2), pp.103-113.

[vi] Suhadolnik, RJ., Reichenbach,NL., Hitzges,P., Adelson,ME., Peterson,DL., Cheney, PR., Salvato,P.,  Thompson,C., Loveless,M., Muller,WG., Schroder,HC., Strayer,DR., and Carter,WA., “Changes in the 2-5A Synthetase/RNase L Antiviral Pathway in a Controlled Clinical Trial with Poly(1)-Poly(C12U) in Chronic Fatigue Syndrome”, In Vivo, 8:599-604, (1994).

[vii] Buchwald,D., Cheney, PR., Peterson,DL., Henry,B., Wormsley,SB., Geiger,A., Ablashi,DV., Salahuddin,Z., Saxinger,C., Biddle,R., Kikinis,R., Jolesz,FA., Folks,T., Balachandran,N., Peter,JB., Gallo,RC.,and Komaroff,AL., “A Chronic Illness Characterized by Fatigue, Neurologic and Immunologic Disorders, and Active Human Herpesvirus-6 Infection”, Annals of Internal Medicine, Jan. 15, 1992:11 (2), pp.103-113.

[viii] J W Gow, K Simpson, A Schliephake, W M Behan, L J Morrison, H Cavanagh, A Rethwilm, P O Behan “Search for retrovirus in the chronic fatigue syndrome” Journal of Clinical Pathology 1992;45:1058 1061

[ix] Suhadolnick RJ, Peterson DL, O’Brien K, Cheney PR, Herst CVT, Reichenbach NL, Kon N, Horvath SE, Iacono KT, Adelson ME, De Meirleir K, De Becker P, Charubala R and Pfleiderer W “Biochemical Evidence for a Novel Low Molecular Weight 2-5A-Dependent RNase L in Chronic Fatigue Syndrome” Journal of Inteferon and Cytokine Research 17:377-385 (1997)

[x] Caligiuri M, Murry C, Buchwald D, Levine H, Cheney PR, Peterson DL, Komaroff AL, and Ritz R, “Phenotypic and Functional Deficiency of Natural Killer Cells in Patients with Chronic Fatigue Syndrome”. J Immunology 1987; 139: 3306-

[xi] Ricard MJ, Favier A et al “HIV-1 Tat protein impairs selenoglutathione peroxidase expression by a mechanism independent of cellular selemium uptake: consequences on cellular resistance to UV radiation. Arch Biochem Biophys. 2001 Feb 15: 386(2):213-20

[xii] Westendorp MO, Lehmann V et al – German Cancer Research Center, Heidelberg) “HIV-1 Tat gene activates NF-kB via TNF-a and associated with reduced MnSOD and GSH/GSSG ratio” EMBO J. 1995 Feb 1: 14(3):546-54

[xiii] Buchwald,D., Cheney, PR., Peterson,DL., Henry,B., Wormsley,SB., Geiger,A., Ablashi,DV., Salahuddin,Z., Saxinger,C., Biddle,R., Kikinis,R., Jolesz,FA., Folks,T., Balachandran,N., Peter,JB., Gallo,RC.,and Komaroff,AL., “A Chronic Illness Characterized by Fatigue, Neurologic and Immunologic Disorders, and Active Human Herpesvirus-6 Infection”, Annals of Internal Medicine, Jan. 15, 1992:116 (2), pp.103-113.

[xiv] Straus,SE., Tosato,G., Armstrong,G., Lawley,T., Preble,OT., Henle,W., Davey,R., Pearson,G., Epstein,J., Brus,I. and Blaese,RM., “Persisting Illness and Fatigue in Adults with Evidence of Epstein Barr Virus Infection”, Ann. Intern. Med.,102:7-16,1985.

[xv] W. John Martin, Li Cheng Zeng, Khalid Ahmed, Maju Roy, “Cytomegalovirus – Related Sequence in a Atypical Cytopathic Virus Repeatedly Isolated From a Patient with Chronic Fatigue Syndrome”, American Journal of Pathology, pgs. 440-451, Volume 145:(2), August,1994.

[xvi] Gow,JW., Behan,WMH., Clements,GB., Woodall,C., Riding,M., Behan,PO., “Enteroviral RNA Sequences Detected by Polymerase Chain Reaction in Muscle of Patients with Postviral Fatigue Syndrome”,Br. Med. J.,302:692-96,1991.

[xvii] Multiple co-infections (Mycoplasma, Chlamydia, human herpes virus-6) in blood of chronic fatigue syndrome patients: association with signs and symptoms. G. L. Nicolson et al., Acta Pathol. Microbiol. Immunol. Scand.(APMIS) 2003; 111: 557-566

[xviii] Reeves WC, Jones JJ, Maloney E, et al (CDC). New study on the prevalence of CFS in metro, urban and rural Georgia populations. Population Health Metrics. 2007; 5(5).

 

From Co-Cure mailing list    14 October 2009

Pat Sonnett reports:

In his current edition of the Lyndonville News, Dr. Bell discusses his views on XMRV. The print version can be found at: http://www.davidsbell.com/PrintLynNewsV6N2.htm

He includes the following section about research in evaluating his “original Lyndonville kids.”

Lyndonville Research Group:

Lets revive the Lyndonville research group again (gasp). I would like to test the original Lyndonville kids for XMRV, and if any of you reading this became ill in the Lyndonville area around 1985, were 18 or under at the time, and want to be evaluated, please write to me at lynnews@davidsbell.com  . Even if you are feeling great now.

If you know anyone that falls into this category, please send the information to them so they can get in touch with Dr. Bell directly.

Media Round ups

Round up 9: Notice from Dr David Bell, Lyndonville News; Article by Paul R. Cheney MD, PhD:
http://wp.me/p5foE-2aQ

Round up 8: XMRV retrovirus study: Position statement from ME Association 14.10.09: http://wp.me/p5foE-2at

Round up 7: XMRV Retrovirus: Whittemore Peterson Institute: CFS: Media Round up 7: http://wp.me/p5foE-2aa 

Round up 6: XMRV Retrovirus: Whittemore Peterson Institute Chronic Fatigue Syndrome study: Videos and audios: http://wp.me/p5foE-29L 

Round up 5: Supporting Online Material for XMRV Chronic Fatigue Syndrome study: http://wp.me/p5foE-299

Round up 4: XMRV Retrovirus: Whittemore Peterson Institute Chronic Fatigue Syndrome study:
http://wp.me/p5foE-28F

Round up 3: Whittemore Peterson Institute (WPI) Chronic Fatigue Syndrome retrovirus XMRV in the media: http://wp.me/p5foE-280

Round up 2: Science 9 October 2009: Whittemore Peterson Institute (WPI) Chronic Fatigue Syndrome link to retrovirus: 08.10.09: http://wp.me/p5foE-27v

Round up 1: Whittemore Peterson Institute (WPI) Chronic Fatigue Syndrome link to retrovirus: 09.10.09: http://wp.me/p5foE-272

The Elephant in the Room Series Two: ICD-10 Version for 2006 Volume 3 Alphabetical Index

Image | belgianchocolate | Creative Commons

Keywords

APA    DSM    DSM-IV    DSM-V    WHO    ICD    ICD-10    ICD-11    American Psychiatric Association    Diagnostic and Statistical Manual of Mental Disorders    World Health Organization    Classifications    DSM Revision Process    DSM-V Task Force    DSM-V Somatic Distress Disorders Work Group    Somatic Symptom Disorders Work Group    DSM-ICD Harmonization Coordination Group    International Advisory Group    Revision of ICD Mental and Behavioural Disorders    Global Scientific Partnership Coordination Group    ICD Update and Revision Platform    WHO Collaborating Centre    CISSD Project    MUPSS Project    Somatoform    Somatisation    Somatization    Functional Somatic Syndromes    FSS    MUS    Myalgic encephalomyelitis    ME    Chronic fatigue syndrome    CFS    Fibromyalgia    FM    IBS    CS    CI    GWS

 

The Elephant in the Room Series Two:

ICD-10, 10th Revision Version for 2006, Volume 3 Alphabetical Index

On 17 June, I received a communication from the Legal Compliance Officer for the Institute of Psychiatry, King’s College London, in which I was advised:

“Dr Sykes’ original report, which was submitted to Action for ME and the Hugh and Ruby Sykes Charitable Trust, contained an inaccuracy, as has been previously discussed (since Chronic Fatigue Syndrome [CFS] is not listed in the main list of neurological disorders in Vol. I of ICD-10, the original report stated, wrongly, that there was no mention of CFS in ICD-10. In fact there is a mention of CFS in Vol.3, the Index).”

“…This inaccuracy was brought to the attention of Action for ME and the Hugh and Ruby Sykes Charitable Trust. The summary report (sent to you on 2 June) corrects the inaccuracy, and has been communicated to them. Dr Sykes believes that this inaccuracy makes no substantial difference to the conclusions of the report.”

This statement from Legal Compliance confirms that the unofficial CISSD Project was initiated, funded, administered and supported by Action for M.E. and co-ordinated by Dr Richard Sykes on the premise that there was no mention of Chronic Fatigue Syndrome in ICD-10.

A copy of ICD-10 Volume 3 Alphabetical Index, to which the Institute of Psychiatry’s Legal Compliance Officer refers, can be accessed, via Scribd at:

http://www.scribd.com/doc/7350978/ICD10-2006-Alphabetical-Index-Volume-3

ICD-10

International Statistical Classification of Diseases and Related Health Problems

10th Revision Version for 2006

Volume 3 Alphabetical Index

(770 pages For the entry in question, see page 528, top right hand column)

The following documents are also available from the same page:

ICD 9-CM 2005

ICD-10 2006 Tabular List
http://www.scribd.com/doc/7350990/ICD10-2006-Tabular-List

Standard Coding Guideline ICD-10-TM 2006

ICD-10 [Update 2007]

———————

This statement in the original December 2007 CISSD Project report:

“Despite claims to the contrary, the classification of CFS is still an open issue. CFS and CFS/ME are not mentioned either in the latest edition of ICD (ICD-10), or in the latest edition of DSM (DSM-IV).”

was amended in the “Summary report” provided by Dr Sykes to the ME Association (published 3 June 2009) to read:

“2.2 Somatoform Disorders, the International Classifications and CFS

There are still problems associated with the classification of CFS. It is true that CFS is listed under “syndrome” in Volume III, the Index, of ICD-10 and placed in G93.3, a category of neurological illness. But there remain the problems:

“(1) some psychiatrists and others contest this classification of CFS as a neurological disorder,

(2) “fatigue syndrome” is listed in ICD-10 as F48, a mental disorder – which creates the apparent anomaly that “fatigue syndrome” is a mental disorder, but “chronic fatigue syndrome” is a neurological disorder, and

(3) the classification of CFS as a neurological disorder does not seem to be fully integrated into ICD-10.

As far as I have discovered this seems to be the only reference to CFS in all the relevant ICD -10 volumes. For example, CFS is not mentioned in main Volume 1, the Tabular List, of ICD-10 – where one would expect it to be – nor is it included in the current (2007) online version of ICD-10.

It is also true that the WHO gave permission in 2004 for the UK adaptation of the WHO primary care management and diagnostic guidelines on mental health, which in this edition expanded to include some common neurological conditions. This edition of the good practice diagnostic and management guidelines follows the ICD-10 Index code for CFS as G93. It remains to be seen, however, whether this practice will be followed in ICD-11.”

The “Summary report” on the CISSD Project, published by the ME Association on 3 June, can be read here:

http://meagenda.wordpress.com/2009/06/03/cissd-project-report-from-dr-richard-sykes/

———————

The “Summary report” drew upon content in the December 2007 report provided to Action for M.E. at the end of the Project’s life. But some sections are worded differently and Appendix B in the December 2007 report does not appear at all in the document that has been published by the ME Association.

The full December 2007 report for Action for M.E. can be read here:

http://meagenda.wordpress.com/2009/06/08/the-redacted-bits-sykes-cissd-report-for-the-mea/

The CISSD Project and CFS/ME, Report on the CISSD Project (Conceptual Issues in Somatoform and Similar Disorders) for Action for ME Richard Sykes
December 2007

———————

I include some extracts, below, including the missing Appendix B, followed by a brief commentary:

[...]

CFS and the International Classifications

[...]

Despite claims to the contrary, the classification of CFS is still an open issue. CFS and CFS/ME* are not mentioned either in the latest edition of ICD (ICD-10), or in the latest edition of DSM (DSM-IV).**

[*Ed: The WHO does not use the composite term "CFS/ME" and describes NICE's use of this term as "unfortunate". **This statement was revised in the "Summary report" published by the ME Association, as set out, above.]

[...]

It is true that in 2004 permission was given by the WHO for the UK to adapt the WHO classification for the purposes of Primary Care in the UK and that on this basis a classification has been produced for use in the UK which lists CFS and CFS/ME as a neurological disorder. While many consider that this is a step in the right direction, this classification is a UK adaptation only and has not been formally adopted by the WHO. It has no validity in other countries. No formal decision has yet been made by the WHO and it is still an open question what the official WHO classification of CFS and CFS/ME will be in the next revision. (See also App B.)

[Ed: This statement was also revised in the "Summary report" published by the ME Association, see above.]

[...]

In addition to coordinating the CISSD project and taking part in the CISSD workshops, my own activities have included travel to meet the main international figures involved in these issues and the organization of a separate workshop on CISSD topics as part of an international conference in Croatia. In addition I gave two presentations at that workshop and further presentations at two other international conferences (in Germany and The Netherlands) and at professional conferences in London*, Oxford and Leeds (See App C). I have also produced the co-ordinator’s report on the project.

[Ed: *Melvin Ramsay Society Meeting, April 2007, attended by Dr Charles Shepherd, ME Association, who also gave a presentation. The presentation given by Dr Richard Sykes: "Conceptual Issues in the Classification of ME/CFS" and the Meeting Agenda were advertised by the ME Association on their website.]

[...]

While it is not a foregone conclusion that in the next international revisions CFS will be classified as a “general medical condition” or physical disorder and not as a mental disorder, the CISSD project will increased the likelihood that CFS and CFS/ME* will be so classified.

[*Ed: WHO ICD does not use the composite term CFS/ME.]

[...]

[Ed: Notes 1-3 do appear in the June '09 "Summary report" published by the ME Association but are included here, for context.]

Notes

Note 1, I am most appreciative of the help given by Professor John Bradfield, former Professor of Histopathology at Bristol University, in compiling this report. In addition, he has made numerous other most valuable contributions as Project Advisor to the CISSD Project.

Note 2. There are, most confusingly, a few exceptions to this rule in ICD-10. For example, Irritable Bowel Syndrome is classified both as a disorder of the Digestive System (K 58) and as a Somatoform Autonomic Function Disorder (F45.32) – a mental disorder.

Note 3. The situation is more complex in ICD-10, since ICD-10 includes, besides Somatoform Disorders, a further possible pigeonhole for CFS/ME. This is the subcategory of “Neurasthenia” which ICD-10 includes in addition to the category of Somatoform Disorders. While the project did not specifically address the problems associated with Neurasthenia, there are some strong objections to the subcategory of Neurasthenia and it is possible that this subcategory will be omitted in the next revision of ICD-10.

CFS and CFS/ME are not listed in ICD-10* and of the 4 related conditions that are listed (post-viral fatigue syndrome, benign myalgic encephalomyelitis, neurasthenia, fatigue syndrome), 2 are listed as neurological disorders and 2 as mental disorders. On the one hand “post-viral fatigue syndrome” is classified as a neurological disorder with the code number G33.3 [sic]. In CDDG this is said to include “benign myalgic encephalomyelitis”. Although the adjective  “benign” has long since been dropped and although most users of the term ME now say that ME should stand for Myalgic Encephalopathy, rather than Myalgic Encephalomyelitis** (since there is no evidence of encephalomyelitis), this would appear to be a good reason for saying that ME is implicitly classified as a neurological disorder. (Since G33.4 [sic] is the code for encephalopathy, it would seem that this code rather than G33.3 [sic] is now the more appropriate code for ME.***)

[...]

Appendix B How does the WHO currently classify CFS/ME?

“CFS/ME” (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis or Myalgic Encephalopathy) is the composite name used by the UK Department of Health and other organizations to refer to a condition that has been named and defined in a variety of ways. Generally speaking, “CFS” tends to be preferred by health professionals, “ME” by patients.

Background

The main WHO (World Health Organization) classification of diseases and disorders is the International Statistical Classification of Diseases and related Health Problems (ICD). This classification is a classification of all disorders and related health problems and contains one chapter, chapter V, which is concerned solely with “mental and behavioural disorders”. The classification is revised periodically: the latest revision is the tenth revision (ICD-10) which was published in 3 volumes; Vol P A Tabular List in 1992, Vol 2: Instruction Manual in 1993 and Vol 3: Index in 1994.

Also produced from 1992 onwards was a separate series of volumes that dealt solely with mental and behavioural disorders, the subject of chapter V of ICD. Although the glossary provided by chapter V of ICD was considered adequate for use by coders or clerical workers, it was not recommended for use by health professionals. The first and central volume of the additional series was The ICD-10 Classification of Mental and Behavioural Disorders. Clinical descriptions and diagnostic guidelines (CDDG), produced in 1992, which was intended for general clinical, educational and service use. (Other volumes in this series included The ICD-10 Classification of Mental and Behavioural Disorders. Diagnostic Criteria for Research (DCR), and Diagnostic and Management Guidelines for Mental Disorders in Primary Care; ICD-10 Chapter V Primary Care Version.)

Is CFS/ME classified as a neurological or as a mental disorder in ICD-10?

[Ed: *This statement has been corrected in the "Summary report" published by the ME Association.

**Dr Sykes provides no supporting evidence for this statement.

***Dr Sykes provides no medical evidence to support his proposal that it would be more appropriate for "Myalgic Encephalopathy" to be classified at the same coding as "Encephalopathy" (G93.4), rather than at G93.3, where "Benign myalgic encephalomyelitis" has been coded for many years.]

On the other hand “neurasthenia” is classified as a neurotic disorder with the code number F48.0 and CDDG states that this includes “fatigue syndrome”. So it could be argued that CFS should be classified as a neurotic, and hence, a mental disorder. A case could also be made for coding some cases of CFS as F45 Somatoform Disorders, either as F45.1, the code for Undifferentiated Somatoform Disorder or as F45:3, the code for Somatoform Autonomic Dysfunction, or as F45.9, the code for Somatoform Disorder, Unspecified. All these are codes for mental disorders.

This presents a problem for CFS/ME. If ME is stressed, then it could be argued that CFS/ME should be classified as a physical disorder, since benign myalgic encephalomyelitis is classified as a neurological disorder. On the other hand, if Chronic Fatigue Syndrome is stressed then it could be argued that CFS/ME should be classified as a mental disorder, since fatigue syndrome is classified as a neurotic disorder.

Developments since 1992

In 2004 the WHO Guide to Mental and Neurological Health in Primary Care, Second Edition, was published by the Royal Society of Medicine Press. This was described on the cover and in the frontispiece as “Adapted for the UK, with permission, from Diagnostic and Management Guidelines for Mental Disorders in Primary Care: ICD-10 Chapter V Primary Care Version”.

In this volume the main term used is Chronic Fatigue Syndrome (CFS), which is said to be also referred to as ME (Myalgic Encephalomyelitis or Myalgic Encephalopathy) or as CFS/ME, and this is coded as G93.3. G.93.3 is the code for post-viral fatigue syndrome, a neurological disorder.

So does this settle the matter? Is CFS/ME now officially classified by the WHO as a neurological, not as a mental disorder?

Unfortunately the matter is not quite so simple, for a number of reasons. In the first place the 2004 publication is described as “adapted for the UK, with permission”. This means that it is not applicable in countries outside the UK, in Germany or France etc.. It does not have international applicability. Secondly, even in the UK it applies only to Primary Care (GP level). It does not claim to be applicable to Secondary Care (hospital level).

Thirdly, even in the UK it does not claim to be an official WHO classification. It is an initiative of the UK WHO Collaborating Centre, one of many of the Collaborating Centres worldwide, and is backed by the English Department of Health and a number of other organizations and individuals. It is not an authoritative WHO classification but is intended simply to provide helpful recommendations which UK GPs may use or not use as they wish. In the UK a GP may use any of a number of competing classifications. These include the International Classification of Health Problems in Primary Care (ICHPPP), the Read Codes, and a triaxial classification. They can also choose not to use a classification system at all.

Summary

“CFS” and “CFS/ME” are not listed in ICD-10 and this leaves room for debate as to how they should be listed. The UK WHO Collaborating Centre, with the support of the Department of Health and other organizations, proposed in 2004 that they should be coded as G33.3 [sic], the code for a neurological disorder. These proposals are undoubtedly encouraging for the ME patients’ organizations, who will hope that this initiative will be confirmed in the next revision of ICD-10, but they are not yet official recommendations by the WHO. There remains confusion and debate about how CFS/ME fits in to the official WHO classification.

A note on DSM-IV.

DSM-IV is the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, produced by the American Psychiatric Association. It has been extensively researched and is in widespread use worldwide.

In DSM-IV there is equally no mention of CFS, but neurasthenia is mentioned and is subsumed under Undifferentiated Somatoform Disorder, one of the Somatoform  Disorders. There is an extensive overlap between the symptoms of neurasthenia and of CFS and consequently some argue that this is where CFS should be placed. Against this it could be argued that CFS or ME or CFS/ME should be classified as G93.3 in ICD and hence should not have a place in a manual of mental disorders at all.

So for DSM-IV, too, there is the same uncertainty as to how CFS/ME should be classified.

[Extracts end]

Since the WHO doesn’t use and doesn’t like the composite term “CFS/ME” – it’s all rather muddled, isn’t it? And when presenting to the Ramsay Society meeting, in 2007, around the work of the CISSD Project, Dr Sykes used “ME/CFS”.

Read the review paper published by the CISSD Project leads in July 2007 (Psychosomatics) and you would not know that ME existed as a term in ICD; there is not a single mention of “CFS/ME” or “ME/CFS” or of existing ME and PVFS codings, because ICD and ICD codings are not mentioned at all, and “chronic fatigue syndrome” is only mentioned in passing as one of the so-called “Functional Somatic Syndromes”.

But the Project was described by Action for M.E. in 2006 as the “WHO Somatisation Project” and that “This grant is provided to help lobby the World Health Organisation for the recognition of M.E. and its re-catergorisation as a physical illness”.

What did Action for M.E. understand by that statement? What does it understand, now?

Dr Sykes has published no commentary on the most recent proposals of the DSM-V Somatic Symptoms Disorders Work Group.

In addition to the misconception around Volume 3, there are also other errors in the December 2007 report to Action for M.E. There are several instances in Appendix B where “G33.3″ and “G33.4″ have been used where this should have been “G93.3″ and (presumably) “G93.4″ (the classification code for Encephalopathy).

When Dr Sykes provides the Institute of Psychiatry’s Legal Compliance Officer with an authorised version of the text of the December 2007 report in order to  fulfil my outstanding request for information under the FOI Act, it is hoped that Dr Sykes will have acted on my suggestion that the document is accompanied by a Erratum Notice which addresses the errors and misconceptions in his original report.

One of the recommendations of the CISSD Project workgroup was support for the APA and WHO’s commitment “…to facilitate the achievement of the highest possible extent of uniformity and harmonization between ICD-11 mental and behavioural disorders and DSM-V disorders and their diagnostic criteria” with the objective that “the WHO and APA should make all attempts to ensure that in their core versions, the category names, glossary descriptions and criteria are  identical for ICD and DSM.”

It is worth noting that alliances of rare diseases patient organisations are already actively engaged in dialogue with  the ICD Rare Diseases Topic Advisory Group as it works on its proposals towards ICD-11.

But we have two chapters of ICD-11 to monitor – Chapter VI (G93.3 codes) and Chapter V: Mental and Behavioural Disorders (F45-F48 codes).

The chapter on ICD Mental and Behavioural Disorders is to be harmonized with DSM-V.

The target date for the release of DSM-V is 2012 and some field trials are expected to start this summer.

How many of our UK and international ME advocacy groups, patient organisations,  ME clinicians and researchers are currently engaged in dialogue with the APA and the WHO over the revisions of these complex and enmeshed classification systems?

———————

For the most recent update on the progress of the DSM-V Somatic Symptom Disorders Work Group:
http://tinyurl.com/DSMSDDWGApril09

For a more expansive report on the progress of this Work Group:

The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report  Journal of Psychosomatic Research, Editorial: June 2009
Joel Dimsdale and Francis Creed on behalf of the DSM Workgroup on Somatic Symptom Disorders
http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext

(See section: “Psychological factor affecting general medical condition”)

For The Status of the CISSD Project unscrambled:
http://meagenda.wordpress.com/2009/06/10/the-elephant-in-the-room-series-two-status-of-the-cissd-project-unscrambled /

For WHO statement on the use of the composite term “CFS/ME” see paragraph eight:
ME/CFS: TERMINOLOGY, Margaret Williams, 27 April 2009
http://www.meactionuk.org.uk/ME_CFS_TERMINOLOGY.htm

Psychiatric Times  maintains a page of resources for the current edition of DSM, DSM-IV, with updates, articles and commentary around the development of DSM-V.

New Scientist: “Interview” with Prof Simon Wessely

On Wednesday, New Scientist published a piece by Clare Wilson featuring Professor Simon Wessely.  Brace yourselves and read the full ”interview” here:

New Scientist

http://www.newscientist.com/article/mg20126997.000-how-people-can-think-themselves-sick.html

How people can think themselves sick

11 March 2009 by Clare Wilson

Can people think themselves sick? This is what psychiatrist Simon Wessely explores. His research into the causes of conditions like chronic fatigue syndrome and Gulf war syndrome have led to hate mail, yet far from dismissing these illnesses as imaginary, Wessely has spent his career developing treatments for them. Clare Wilson asks what it’s like to be disliked by people you’re trying to help…Read on

Comments – and I’m sure readers will have plenty – can be left via the Comment section at the foot of the article. 

For letters, use the online form:  http://www.newscientist.com/contact/person?recipient=lett 

Or E-mail letters to:  letters@newscientist.com 

If submitting a letter, include full postal address, telephone number and article reference (issue, page number, title). New Scientist appears to prefer short letters of around 150 words.

At the time of publishing, there have been over 90 comments.

Update: @ 18 March, there are now over 330 comments.  Comments are restricted to 5000 characters, so you may need to split longer comments over two postings.  The posting box has difficulty accepting text pasted from an email or from Word or Notepad.  It also has a problem displaying apostrophes – it displays the html code instead.  So avoid the use of “can’t”, “it’s”, “Wessely’s” etc.

Here’s one I posted, earlier:

http://www.newscientist.com/commenting/browse?id=mg20126997.000&page=7

In response to comment: Where Is The Science???
Fri Mar 13 14:14:51 GMT 2009 by Suzy Chapman, ME agenda

Mark Hewgill comments that he is surprised to see this article in New Scientist. I am not. In my view, this cobbled together piece was orchestrated as a potential damage limitation exercise, appearing as it did, just two days before the anticipated handing down of the judgement on the Judicial Review of the NICE CFS/ME Guideline (CG53). I very much doubt that the timing of this piece was co-incidental.

In March/April 2008, the Royal Society of Medicine received a large number of complaints because the Conference Planning Committee (of which Professor Wessely had been a member) had been dominated by psychiatrists and because a significant number of those selected to give presentations were also from predominately psychological / psychiatric backgrounds.

James Campbell comments, “Yet again we have Professor Wessely failing to mention any of the several thousand research papers which clearly show that ME/CFS is an organic multi-system disease.”

Towards the end of his own presentation at this RSM Conference, Prof Wessely had remarked, “…it is not possible, really though, to completely avoid the outside world much as we would like…I also think it is a great mistake, because if you really actually want to understand Chronic fatigue syndrome – ME – whatever we are going to call it, you have to do so in possession of all the facts – not just those facts that you like, but all of them. You cannot pick and choose, and the history of science tells us very clearly that turning your back on things that you do not like, things that are not going the way you want them to, and there are many, many examples of this, at best leads to false conclusions and bad decisions, and at worst, leads to bigotry and intolerance.”

Indeed. So Professor Wessely, we can expect to see you at the 29 May Invest in ME Conference?

Times: The fight goes on for veterans broken by the horrors of war

Times

The fight goes on for veterans broken by the horrors of war

November 12, 2007

Terry Walker died a wreck of his former self. Now his parents are suing the MoD for damages

When Ted and Hazel Walker took part in the Remembrance Sunday service at their parish church their thoughts were for the son they buried this year.

Three weeks before his death, Terry Walker woke up in his hospital bed screaming that the tanks were coming.

Thrashing around, the Gulf War veteran pulled out the tubes and wires that connected him to the monitoring equipment in the specialist heart unit at Freeman Hospital, Newcastle upon Tyne. He fought the nurses who tried to calm him down. It was one of the final nightmares to visit a man who died a broken shell of his former self.

Mr Walker’s parents, pensioners from a village near York who have been left to care for his 13-year-old daughter, have taken up their son’s long battle to seek better treatment for the victims of Gulf War syndrome.

Read rest of article here…