Saturday, October 24, 2009

Is there a better term than "medically unexplained symptoms"?

From Suzy Chapman

24 October 2009


An Editorial to watch out for in a forthcoming issue of the Journal of
Psychosomatic Research.

The In Press version is already available online (purchase required).

[Current issue is Volume 67, Issue 5, Pages A1-A4, 367-466 (November 2009)]
http://www.sciencedirect.com/science/journal/00223999


Journal of Psychosomatic Research

In Press

Editorial
Is there a better term than "Medically unexplained symptoms"?

Abstract: http://tinyurl.com/jpsychoresMUS


doi:10.1016/j.jpsychores.2009.09.004

Copyright © 2009 Published by Elsevier Inc.

References and further reading may be available for this article. To view
references and further reading you must purchase this article.

Editorial

Francis Creed a, Elspeth Guthrie a, Per Fink b, Peter Henningsen c,
Winfried Rief d, Michael Sharpe e and Peter White f

a University of Manchester, Manchester, UK  francis.creed@manchester.ac.uk
b University Hospital Aarhus, Denmark
c Technical University, Munich Germany
d University of Marburg, Germany
e University of Edinburgh, UK
f Queen Mary University of London, UK

Received 24 August 2009; revised 24 August 2009; accepted 7 September 2009.
Available online 17 October 2009.

Article Outline

Introduction

"Medically unexplained symptoms" - one advantage, but many reasons to
discontinue use of the term

Criteria to judge the value of alternative terms for "medically unexplained
symptoms"

Terms suggested as alternatives for "medically unexplained symptoms"

Implications for treatment

Implications for DSM-V and ICD-11

Conclusion

References

-------------------------------------------

Note:

Francis Creed is Co-Editor of the Journal of Psychosomatic Research.

Francis Creed, Per Fink, Peter Henningsen and Winfried Rief were all
members of the international CISSD Project, (Principal Administrators:
Action for M.E., Co-ordinator: Dr Richard Sykes, now engaged in the "London
MUPSS Project" in association with the Institute of Psychiatry).
Michael Sharpe was the UK Chair of the CISSD Project.

Michael Sharpe and Francis Creed have been members of the APA's DSM-V
Somatic Distress Disorders Work Group since 2007.

Francis Creed (UK), Peter Henningsen (Germany) and Per Fink (Denmark) are
the co-ordinators of European EACLPP MUS Work Group.

Francis Creed and Peter Henningsen were the authors of "A white paper of
the EACLPP Medically Unexplained Symptoms study group - Patients with
medically unexplained symptoms and somatisation - a challenge for European
health care systems", January 2009.  Draft white paper here:

http://www.eaclpp.org/working_groups.html

Per Fink is a member of the Danish Working Group on Chronic Fatigue
Syndrome, established in August 2008 and expected to complete its work in
spring 2009.

DSM-V is anticipated to be finalised in May 2012; field trials were
expected to start in October 2009.  No updates or reports have been
published by the APA's DSM-V Task Force or Work Groups since April 2009.

An Editorial: The proposed diagnosis of somatic symptom disorders in DSM-V
to replace somatoform disorders in DSM-IV - a preliminary report by DSM-V
Work Group members, Joel Dimsdale and Francis Creed on behalf of the DSM-V
Workgroup on Somatic Symptom Disorders. was published in the June 2009
issue of the Journal of Psychosomatic Research.

Full text of DSM-V WG preliminary report can be accessed here:

http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext

The International Advisory Group for the Revision of ICD-10 Mental and
Behavioural Disorders most recent meeting took place on 28 - 29 September.
It is anticipated that a Summary Report of the meeting will be available in
late November/December.

DSM-V and ICD-11 have committed as far as possible "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."

For detailed information on the proposed structure of ICD-11, the
Content Model and operation of iCAT, the collaborative authoring platform
through which the WHO will be revising ICD-10, please scrutinise key
documents on the ICD-11 Revision Google site:

https://sites.google.com/site/icd11revision/
https://sites.google.com/site/icd11revision/home/documents

_____________________

Suzy Chapman
http://meagenda.wordpress.com
http://twitter.com/MEagenda
 
* * *
There are better terms, but you know doctors aren't going to agree to terms like "Doctor Lacks Adequate Knowledge".
 
It is much easier on their egos to blame the patient for having a couple screws loose than to admit the truth that "maybe I haven't figured out yet what's the right test for what you have".





Alternatives to CBT/GET

Two studies plus a commentary have now been published in the print version of PEC.  The findings offer physicians an alternative to CBT and GET based on the most cited CBT model of CFS. Effect sizes are comparable. Sadly, NICE has decided not to add the alternatives to the three CBT-model interventions they currently recommend.  The situation may be reviewed in August 2010.



Goudsmit, EM., Ho-Yen, DO and Dancey, CP. Learning to cope with chronic illness. Efficacy of a multi-component treatment for people with chronic fatigue syndrome. Patient Education and Counseling, 2009, 77, 2, 231-236.

Jason, L., Benton, M., Torres-Harding, S and Muldowney, K. The impact of energy modu-lation on physical functioning and fatigue severity among patients with ME/CFS. Patient Education and Counseling, 2009, 77, 2, 237-241.

Van Houdenhove, B and Luyten, P. Treatment of chronic fatigue syndrome: how to find a 'new equilibrium'? Patient Education and Counseling, 2009, 77, 2, 153-154.


All three papers: http://www.sciencedirect.com/science/journal/07383991  


----------------------------------------------------------------------

Ellen M. Goudsmit C.Psychol. FBPsS





Reeves still insists exercise helps "CFS"

(This is a new message - I'm not repeating something I've said before)

In the conclusion section
of
Electroencephalographic correlates of Chronic Fatigue Syndrome
Michael J Decker , Humyra Tabassum , Jin-Mann S Lin  and William C Reeves
http://www.behavioralandbrainfunctions.com/content/5/1/43
(a study which used the Reeves empirical definition (2005)),

the authors say:
"Future studies using methods known to augment delta and alpha spectral
power, such as meditation [38], graded exercise [39] or administration of
gamma hydroxybutyrate [40], followed by assessment of EEG spectral power and
symptom expression are required to address this."

[39] Gambelunghe C, Mariucci G, Tantucci M, Ambrosini MV: Effects of light
physical exercise on sleep regulation in rats.
Med Sci Sports 2001, 33:57-60.

Of course with CFS, the response to exercise is abnormal so physical
exercise may not have the same effect.  And the study used the Reeves
empirical definition (2005) so we don't know if the finding would remain in
a properly-defined CFS group.

Tom Kindlon
===============================================================
Don't support the Reeves/empirical definition/criteria for CFS?
Sign the petition at: http://CFSdefinitionpetition.notlong.com
=============================================================== 





Physiological cost of walking for CFS patients

Physiological cost of walking in those with chronic fatigue syndrome
(CFS): A case-control study.

Journal: Disabil Rehabil. 2009;31(19):1598-604.

Authors: Paul L, Rafferty D, Marshal R.

Affiliation: Faculty of Medicine, Nursing and Health Care, University
of Glasgow, Glasgow, UK.

NLM Citation: PMID: 19848558


Purpose. To examine the physiological cost of walking in subjects
with chronic fatigue syndrome (CFS) and a matched control group,
walking at their preferred and at matched walking speeds.

Methods. Seventeen people with CFS and 17 matched-controls
participated in this observational study of physiological cost during
over-ground gait. Each subject walked for 5 min at their preferred
walking speed (PWS). Controls then walked for 5 min at the same pace
of their matched CFS subject. Gait speed and oxygen uptake, gross and
net were measured and oxygen uptake was expressed per unit distance
ambulated. CFS subjects completed the CFS-Activities and
Participation Questionnaire (CFS-APQ).

Results. At PWS the CFS group walked at a slower velocity of 0.84 +/-
0.21 m s(-1) compared to controls with a velocity of 1.19 +/- 0.13 m
s(-1) (p < 0.001). At PWS both gross and net oxygen uptake of CFS
subjects was significantly less than controls (p = 0.023 and p =
0.025 respectively). At matched-velocity both gross and net
physiological cost of gait was greater for CFS subjects than controls
(p = 0.048 and p = 0.001, respectively).

Conclusion. The physiological cost of walking was significantly
greater for people with CFS compared with healthy subjects. The
reasons for these higher energy demands for walking in those with CFS
have yet to be fully elucidated.






Friday, October 23, 2009

Dr Peterson's Testimony about XMRV Live on Oct 29

If you wish to listen to primary source information about the new acquired
immune virus, a retrovirus affecting large numbers of CFS patients, Dr. Dan
Peterson has an hour testimony in Washington at the CFSAC meeting this OCT
29. The meeting starts at 9am est and Dr Peterson is on at 10am, which is
9am CST.

Check the link in advance to see if you can view the last meeting..then you
will know if you have all the computer programs downloaded (like real
player)


http://videocast.nih.gov/summary.asp?live=7908


Jean Harrison
MAME inc






Thursday, October 22, 2009

XMRV and ME/CFS What do we know so far? What don't we know?

In a message dated 10/22/2009 10:09:42 A.M. Pacific Daylight Time,
charles.c.shepherd@BTINTERNET.COM writes:
RETROVIRUS XMRV and ME/CFS: WHAT DO WE KNOW SO FAR? AND WHAT DON'T WE
KNOW? (VERSION 2)


UPDATED POSITION STATEMENT FROM THE MEA:

This is a considerably extended and updated version of our first summary
on XMRV research.

It includes additional information relating to questions that are coming
to the MEA about the research findings, in particular questions concerning
possible transmission and spread of XMRV, availability of private and NHS
tests for the virus here in the UK, possible treatment of XMRV with antiviral
drugs, and volunteering for UK research studies.

We also report on a new research study from Germany that has queried the
link between XMRV and prostate cancer.

This summary is intended to be a balanced account which not only raises
questions but is also very cautious when it comes to drawing any firm
conclusions about the role of XMRV at this very early stage in the research.

Full statement available on the MEA website at:
http://www.meassociation.org.uk

ENDS

A CFS Chart on Every Doctor’s Wall

 







Wednesday, October 21, 2009

Good work, gang!

Hillary's NYT article is now up to #2 on the most-emailed list.
 
Way to go!
 

 
 
 
 
 
 

Free Tidbits from Dr Cheney Research

 






Way to go, folks!

Hillary Johnson's Op-Ed piece is the 5th most e-mailed of the day.  Let's keep at it and see if we can make it #1!
 





Hillary on XMRV

 






The latest on Ampligen

 
"Hemispherx has spent more than $500 million and more than three decades developing the drug."


"Data for final FDA reports are presently undergoing internal auditing at Lovelace and Hemispherx with a projected completion of the final report for late 2009 to early 2010," the company stated in the filing.

Tuesday, October 20, 2009

Dr. Bell's Lyndonville News, October 2009

Introduction

Holy smokes! Just when I want to retire this comes along. How am I going to get any peace and quiet?


Here is the Lyndonville News coming out within a week of a paper being published, and already what I have to say is old news. Probably everyone reading this newsletter has been on the edge of their seats listening to NPR, CBS, Reuters, and so on. The CDC has already said that it isn't going to pan out. It is my guess that the media coverage will intensify because this is really big news.


First of all, congratulations to Drs. Judy Mikovits, Vincent Lombardi, Robert Silverman, Dan Peterson and the rest of the authors. And a special congratulations to the Whittemore Family Foundation, and the Whittemore-Peterson Institute for putting this together. For many years ME/CFS has been limping along on complex science that points to mechanisms of illness that most physicians have ignored. Limped along with skeptical specialists, medical establishments, government agencies. Limped along despite attacks by disability companies. Now we can get down to business.


In this issue of Lyndonville News I will briefly repeat what has been reported in the Science paper and the press releases. But most of all I want to predict where this is going. I am using the "force" here. I have no special or inside information from the Whittemore-Peterson Institute. They have to be cautious and circumspect. I don't. I am an old man sitting on my porch rocking chair, desperately trying to retire; I will say what I think is true.


By the way, people are already asking me if this is related to the retroviral sequences we published in 1991. Please don't ask me, history will sort this stuff out; the focus and attention now needs to be upon the current work, mechanics of symptom generation, epidemiology, and treatment implications. The focus needs to be upon the Whittemore-Peterson Institute, and other scientists who will become involved in replicating the material and moving on from there. When I was on the CFSAC we recommended that ME/CFS centers be established. That advice fell on deaf ears. But now, before the Whittemore-Peterson Institute has even opened its doors we get privately-funded science that will end up changing the world.



Literature Review: XMRV in Science


Dr. Judy Mikovits of the Whittemore Peterson Institute in Nevada and colleagues at the National Cancer Institute and the Cleveland Clinic have published a paper in the prestigious journal Science, an article entitled "Detection of an infectious retrovirus XMRV, in blood cells of patients with chronic fatigue syndrome." (Online 8 October 2009; 101126/science.1179052)


The virus, an infectious gammaretrovirus, XMRV, (for Xenotropic Murine RetroVirus) was found in the blood of 68 out of 101 chronic fatigue syndrome patients, by looking for DNA. The same virus was present in only 8 of 218 healthy people. This virus is known to be "oncogenic" meaning that it can cause cancer. At this point only a link has been established between XMRV and CFS.


XMRV was first linked to human disease by Robert H Silverman, PhD at the Cleveland Clinic in patients with prostate cancer who also had a defect in the RNAse L antiviral pathway. As this pathway has been known to be abnormal in CFS(1, 2), it was reasonable to search for the virus in CFS. In their first paper on XMRV it was linked with this RNAse L defect, but this has since been revised(3).


The XMRV DNA is present in 67% of cases, and few controls. (More data show greater than 95% of the more than 200 ME/CFS, Fibromylagia, and "Atypical MS" as per their website www.wpinstitute.org). High levels of XMRV proteins were expressed, and they were able to produce infectious particles in culture.


In the paper, the authors are cautious, stating that the finding only shows a link between the virus and CFS, and does not prove that the pathogen causes the disorder.



Personal Comment: XMRV as "The Puppet-master Virus"


Is CFS a single illness or a heterogeneous collection of fatigue-causing illnesses? This question has been important for 25 years and needs to be addressed at the beginning of the XMRV era. In some senses all illnesses are "heterogeneous". There is the viral agent and there is the host. No two hosts are identical, and even identical twins have "epigenetic" differences. Therefore it is inevitable that phenotypes (the way an illness appears in a person) may vary. Poliovirus is a good example. One agent causes a mild flu-like infection in one person and paralysis in another. But polio should not be thought of as a heterogeneous illness.


XMRV may "cause" CFS because it allows other agents, (EBV, Lyme, enteroviruses, etc) to be expressed differently. After all, XMRV is a retrovirus, and look at the variations in phenotype in other known human retroviruses. The lymphocytes expressing XMRV were "activated" implying that this agent was not just quietly lurking in cells as some agents do.


The "Two Hit" Theory has been circulating for twenty years. One hit is an immune altering silent hit, and the second is a herpes virus or some other agent. Actually herpes viruses can carry retroviruses along, so here is more work for the Whittemore-Peterson Institute to do. John Coffin wrote "One New Virus-How many Old Diseases?"(4)


I would think of XMRV as the "puppet-master". It is known to be linked to prostate cancer; it lurks in the shadows and pulls certain strings causing cells to become malignant. Perhaps it pulls another string to cause EBV to be more active, or Lyme, or enterovirus? Another string to alter RNAse L? Many, many questions open up.


But we already know several things. First, ME/CFS is not like your average infection, pneumonia for example. This is a really complicated disease. But AIDS was complicated and now is pretty well figured out. Secondly, we know the clinical aspects of ME/CFS, putting aside the arguments over what definition you use. And the good news: After following patients for twenty years, not many are getting cancer. But there is bad news; cancer takes a long time to get going.


But the really good news is that if XMRV is the puppet-master of ME/CFS, it conceivably could be very treatable. Theoretically, more treatable than HIV. Lots of work to do.


The politics of ME/CFS are daunting. But now may be the time to forge ahead and get something done. Congratulations again to the authors and the Whittemores. It is time for the CDC and the NIH to be constructive and do some science.



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.



Patient's Observations


1) I feel like I am drowning, and what I ask is if you can recommend a good doctor that actually takes...Medicare.  I...do not understand why average doctors seem to know so little about this...I am on disability; My resources are limited.  I would have to do this all out of pocket.


Response: How can I answer these questions that I have now seen for twenty five years? I would say that I feel badly for you, or shut my eyes and move silently on. I have been accused of being too optimistic in the past, and certainly those criticisms were correct. But now things are different. Now I am not going to be too optimistic - I think XMRV is going to turn out to be the "cause" of ME/CFS, and I think treatments will be available from every family physician in America who accepts Medicare. The question is whether this occurs next year or twenty years from now.


.......................


2) As a teacher-turned-programmer, due to CFS, cognitive functioning is particularly important for me...I now can barely skim through your not-too-difficult articles...Anyhow, you said "I may consider testing some persons with...PCR for HHV-6, but this can be expensive and not covered by insurance". I would like to know about how much money this can be (the potential cognitive benefits could be well, well worth it for me),...


Response: There are two issues here. The first is cognitive. Historically I have always been struck by the similarities between the cognitive decline in ME/CFS and HIV infection. This is one reason that I have long felt that a retrovirus would be an excellent candidate to be the puppet-master.


Secondly, as far as the finances are concerned, it is possible that things will change. Federal approval of diagnostic testing needs to be put on a fast track. Now.


.......................


1. Suhadolnik R, Peterson D, Reichenbach N, et al. Clinical and biochemical characteristics differentiating chronic fatigue syndrome from major depression and healthy populations: relation to dysfunction of RNase L pathway. J Chronic Fatigue S 2004;12:5-36.

2. Nijs J, De Meirleir K. Impairments of the 2-5A Synthetase/RNaseL pathway in chronic fatigue syndrome. Anticancer Research 2005;25:1013-22.

3. Schlaberg R, Choe D, Brown K, Thaker H, Singh I. XMRV is present in malagnant prostatis epithelium and is associated with prostate cancer, especially high-grade tumors. PNAS 2009.

4. Coffin J, Stoye J. Perspective - a new virus for old disease? Science 2009.


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Contact: If you wish to contact Dr. Bell, e-mail to lynnews@davidsbell.com; very few inquires are answered, but comments are welcomed.


To Subscribe: If you wish to either subscribe or unsubscribe to the Lyndonville News, go to www.DavidSBell.com/DSBJoin.htm and follow the instructions. The e-mail subscription is free.


Disclaimer: Any medical advice that is presented in the Lyndonville News is generic and for general informational purposes only. ME/CFS/FM is an extremely complex illness and specific advice may not be appropriate for an individual with this illness. Therefore, should you be interested or wish to pursue any of the ideas presented here, please discuss them with your personal physician.

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Women's health problems doctors still miss

"More than 40 percent of women eventually diagnosed with a serious autoimmune disease have basically been told by a doctor that they're just too concerned with their health or they're a hypochondriac," says Virginia Ladd, founder and executive director of the American Autoimmune Related Diseases Association.

* * *
 
Dr. Bell puts the estimate at fully half of people who are dismissed as hypochondriacs who are eventually diagnosed with a valid physical condition that explains their symptoms.
 
Much of the problem, I think, is that most autoimmune patients are female and most doctors are male.  When a woman complains, men are conditioned to ignore it unless they see some valid basis (which is often absent in a cursory exam of autoimmune patients).



Monday, October 19, 2009

Lookout Magazine on CFS

For many CFS patients, the lack of support from loved ones who barely acknowledge the reality of the affliction is as painful as the illness itself. Unfortunately, the church isn’t doing much better. While the faith community is good at ministering to those who are grieving or have diseases like cancer, many ignore invisible illnesses like CFS. But CFS is a real, complex illness that has both physical and psychiatric manifestations; it is not just depression or anxiety.

Cynthia Trench has often felt ostracized by other Christians. "Many in church were just plain hurtful about my illness." She says, "But God has taught me to take the comfort from the hurts I have been given and share that with others." Many leave church hurt, their faith battered, and in order to hold on to what faith they have left, they avoid the church that brought them discouragement.

Trench often refers to people like herself as ‘the culture of the unhealed.’ She says, "We’re the dirty little secret of the church family, especially when God’s healings in the congregation are constantly touted from the pulpit and classrooms without the compassion to look at long suffering and how to live life in the difficult path God has chosen for us." A woman once suggested that Trench must not have enough faith to be healed. "I kindly but firmly said, ‘It takes more faith to remain unhealed, but since you don’t think I do then let’s put you in charge of praying for my healing. Let me know how it goes.’" [great response – wish I’d thought of it!]

Even though Christina Gombar was raised in the church, she has explored Eastern religions through yoga because she finds their philosophy to be more forgiving. "Christianity, of course, is supposed to be the religion that reached out to the poor and the lame—but in real life, many Christians tend to be very judgmental."



Sunday, October 18, 2009

CFS on GMA

The CFIDS Association of America Dr. Donnica Moore will be on "Good Morning America" (ABC stations) on Monday (Oct. 19) morning to provide information about CFS and the ink to XMRV. (We don't know what time the segment will be aired.)

UPDATE:

The CFIDS Association of America Here's a link to Dr. Donnica Moore on today's "Good Morning America Health" segment about CFS and the link to XXMV. http://abcnews.go.com/video/playerIndex?id=8864348