Friday, December 25, 2009

CFS is *still* being disparaged even with XMRV proof

Dr. Bell wrote:
I am  amazed how mainstream medicine is so fixed in their biases against
ME/CFS that  the concept of XMRV actually causing the illness almost doesn't
enter their  consciousness. Dr. Reeves, head of the CDC project on CFS has
made only one  comment to my knowledge, that he "doubted" this would turn out.
What a  comment. Why not "Interesting." or "we will see."

Hillary Johnson made some interesting observations. First,  "Why  wasn't
everyone demanding dozens of replicative tests on the prostate cancer 
findings?" Yet when CFS is implicated we will need twenty studies which  replicate
the first. And if some poor studies do not find XMRV, they will be  given
preferential weight to studies that actually find  it.
 
Clearly the solution to this is for our existing CFS experts to decree that huge numbers of CFS patients have been "misdiagnosed" all these years, and what we really had was XAND ... except that because there was no test for XMRV until now, we got mislabelled.
 
Decades ago, I got the CFS diagnosis and scorn, while another young lady in our church got an MS diagnosis and more help than she really needed.  It was not the one who quit her job immediately who was called "lazy" -- it was the one who was struggling to continue working against the odds.  She was not called "faker" as I was, even when she quickly amended her divorce paperwork to request full lifetime alimony for her purely self-reported symptoms, while I continued to work and support myself (not only then but up until now).  I was diagnosed first, but as soon as she got her diagnosis, I was the one called "copy cat", for symptoms that I'd had for over a year before she suddenly claimed to have any symptoms.
 
I asked my doctor why she got one diagnosis and I got a different one, with almost identical symptoms.  She had double vision, which is seen in MS but not in CFS, and I had something that's seen in CFS but not in MS.  That was the extent of the difference between respect and insults: double vision.  Her best friend was a nurse, and I am certain that she discussed it with the nurse before going to a doctor; her friend may have even told her to mention double vision to make sure she didn't get the diagnosis that would be disparaged.  How do you disprove that the patient has double vision?  (Well, except maybe by following the patient to the parking lot and noting that she drove herself there.)
 
When I realized that "CFS" means nothing to most people, but "Chronic Fatigue Syndrome" produces "I have that, too", I changed my explanation of what I have to "something very similar to MS" -- people can get their heads around that -- and slowly work my way around to the CFS/Chronic Fatigue Syndrome terminology if they appear interested in how I'm affected.  That seemed to work better than spelling out CFIDS/Chronic Fatigue and Immune Dysfunction Syndrome ... as soon as I got to the IDS part, people ran away, thinking I had something like AIDS, was contagious, and they'd get it from touching me.  (It may have been a better name, but I didn't want to live in isolation, so I went back to the lesser of two evils.)
 
Now, last laugh, I *do* have "something like AIDS", a retrovirus.  If we drop the "formerly known as CFS" part entirely, maybe we'll finally get some respect for the yeoman's duty we've all done, the courage we've shown over the years in battling our illness *and* public perception, far in excess of what we've always gotten when we said "CFS" and people heard "tired all the time".  In 23 years with this disease, only one person has ever said "courageously battling" about me, a term that's always applied to cancer patients, and she's the one with a sister who died of CFS complications, so she knows the truth about the disease, that it's not just a case of the sleepies. 
 
 


Thursday, December 24, 2009

Pain Pills Can Be Deadly

painpatientnews@mail.ivillage.com writes:



Chronic Pain

December 23, 2009

Pain Pills Can Be Deadly
Don't make this medication mistake

 For those with chronic pain, medications to dull the ache are often part of the plan. But you should know some medications can be deadly when taken improperly.

See what drug companies are doing to keep pain meds safe and available to those who need them.

 

Herbs, vitamins that can hurt you - CNN.com

 
Since many of us treat symptoms with non-prescription supplements -- especially when doctors refuse to prescribe anything for those symptoms -- this article is important reading.

5 tips for getting what you need from your doctor - CNN.com

 


 

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I hope that everyone is able to have a good holiday season.



XMRV: Quiet Time

My thanks to all those who came to the lecture December 6th on XMRV, and to all those who have kindly donated to the research group. None of the research group is paid from these funds, and if we were to stop working the money will be forwarded to some other group working on ME/CFS, probably WPI. In the spirit of full disclosure, pizzas and other relatively inexpensive luxuries do come from these funds, but no vacations in Maui. I had wanted to write back to persons who have donated but that has proven impossible.

The December 6th lecture was well attended. The reason I did not tape it or put it on the web is for two reasons. First I do not know how and we are kind of busy and I didn't want to take time to learn. And secondly, I expect that every few weeks the material will change and I want to keep this talk up to date. I expect that six months from now the talk will be completely different.

I have had a few requests to give a talk on XMRV, and I am happy to do so, it is one of the joys of being retired. The material I present will be either published, from very credible public sources, or my own personal opinion. I will not share back room gossip, even if it is the stuff that makes my socks roll up and down. My goal is to insist that good science goes into discovering what role, if any, XMRV has in ME/CFS. I will go anywhere in the US if the supporting group covers costs and offers a small honorarium. I think spin off benefits from these talks will be to re-invigorate support groups. Dr. Klimas said in her last talk that now is the time for people to get active and I completely agree.


ME/CFS Essay: Nature Abhors a Vacuum

I have a patient in my practice by the name of Sandra Cousins (an obviously false name). She developed CFS somewhere around the age of nine, and I can remember her confusion going from doctor to doctor, occasional visits to the psychiatrist and acupuncturist. Over the years she has been diagnosed with Lyme disease, depression, atypical MS, arthritis, migraine, irritable bowel and lupus, but no one knew what she had. Like many patients, she could tell that, when the medical provider attended to the chart and did not look her in the eye while delivering a diagnosis, the provider had absolutely no idea of what was causing her illness. Same old story.

Years went by, and after five years of illness she improved enough to deny the existence of any illness. She was getting by. She could not go out drinking with her college friends because it made her very ill and then have to miss a few days of classes. All she could do was classes and organize her study time well enough to pass. But she was "fine."

Work after college was a disaster, as was her love life. But she got by, she was "fine." She stopped going to doctors because they had little to offer except medications that made her feel more ill. She resented being told she was resistant to the obvious truth that she was healthy as a horse.

About ten years ago, Sandra went through a change. She decided that she was depressed and that the doctors were right. She took low doses of antidepressants which did little good but made her doctor happy. She joined support groups, went to therapy, and committed herself to accepting the truth. Or at least accepting what other people considered true. Lots of things didn't fit, but at least now she wasn't crazy, she had a legitimate diagnosis, she was depressed. Being depressed and making up somatic symptoms (somatisizing) was a lot better than being crazy. She was no longer lost in the never-never land of no-diagnosis. She belonged. She went on social security disability because she was unable to maintain eight hours a day five days a week because of the depression.

When Sandra was evaluated for ME/CFS, she was classic. She did not feel despair, in fact, now that she was "depressed" she felt quite good. Except for the pain, sleep problems, exhaustion, abdominal pain, annoying lymph node tenderness and the foggy memory that is.

Nature abhors a vacuum; it is much better to have an incorrect diagnosis than no diagnosis at all. Even when the immunology testing, orthostatic testing, and 2 day exercise testing essentially confirmed the diagnosis of ME/CFS, Sandra was reluctant to believe it. Being "depressed" for the past ten years made her more happy than some unknown diagnosis that doctors didn't believe in.


XMRV Study Notes:

In a recent note by Suzy Chapman on Co-Cure, she quotes Dr Charles Shepherd as writing "...Not surprisingly, the first stage of the attempt to replicate these results has resulted in various international groups almost entering a race to see who could replicate or refute the WPI results first. And this has meant they have gone for an easy and immediate source of patient material - stored blood samples. I am not aware of any stored blood samples here in the UK that are from patients who meet Fukuda plus Canadian criteria and I doubt if there are any.

This brings up really important issues in interpreting the results of studies that will come out over the next six months. In my practice over the years, I have seen the whole range of patients from kind-of tired to bedridden orthostatic intolerance. Despite what the different criteria attempt to prevent, much of the diagnosis is based upon using the "force". There are some clinicians who diagnose CFS and I have absolutely no idea of what their patients are like. Through years of observation, I do have a concept of what Dan Peterson's patients are like.

So is XMRV in really severe ME? CFS? Orthostatic intolerance? CFS plus POTS? Mild fibromalgia? Atypical MS? CFS with or without depression? Chronic Lyme disease? Multiple chemical sensitivities? And what about stored samples? Samples taken in EDTA or heparin? And so on.

So what does this mean? It means that if someone can't find XMRV in a study, it is either because it is not in the patients they tested, or their lab could not detect it even if it was there. Or the strain might be different, or they used the wrong tubes, or the diagnosis was wrong. And on and on. Again using the "force", I would not be surprised if some of the quickest replication studies fail to confirm XMRV. But as long as people do not jump to conclusions too quickly, science will win out. Truth will win out. That's all I am looking for.


Changing Standards to Establish Cause of ME/CFS

Dr. J Silver in a review in Journal Watch said, "XMRV might be a cofactor in another infectious process, or the immunologic problems of CFS patients may increase their susceptibility to XMRV infection. Patients with depression also have impaired immune function; could psychiatric illness predispose to XMRV? The 4% prevalence of XMRV infection in the control group might indicate that XMRV infection is a risk factor for development of CFS."

I am amazed how mainstream medicine is so fixed in their biases against ME/CFS that the concept of XMRV actually causing the illness almost doesn't enter their consciousness. Dr. Reeves, head of the CDC project on CFS has made only one comment to my knowledge, that he "doubted" this would turn out. What a comment. Why not "Interesting…" or "we will see…"

Hillary Johnson made some interesting observations. First,  "Why wasn't everyone demanding dozens of replicative tests on the prostate cancer findings?" Yet when CFS is implicated we will need twenty studies which replicate the first. And if some poor studies do not find XMRV, they will be given preferential weight to studies that actually find it.

Her second point was that "HIV was hailed as the cause of AIDS in the U.S. in the spring of 1984, after the NCI found isolates in fewer than fifty patients. A few weeks later, an NCI scientist isolated the virus from the blood of a nurse in Los Angeles who fell ill with AIDS after a blood transfusion and the virus was found in the donor blood. That's all it took." Dr. Dan Peterson said at the recent CFSAC meeting that a transfusion case of CFS and XMRV has already been found and traced back to the donor.

During the next six months we will know. I am confidant that enough good scientists will try to replicate the WPI study that a bad study here and there will not bury the subject. Meanwhile, what is happening? It is possible that the skepticism is so great that absolutely nothing is happening now. But my hope is that in back rooms across the world scientists are quietly working on this, designing studies to test blood banks, designing treatment studies. Right now is "quiet time"; I hope they are using this quiet time to make some real progress.


Question and Answer

Question: How does XMRV fit in with slow onset ME?

Answer: I have no idea. But in six months to a year we will know. First option is that XMRV has nothing whatsoever to do with ME, it was a fluke, and no one, anywhere, will be able to find it even when they are looking without bias, and in good patients, and with good science. Secondly, XMRV may have either no symptoms, or relatively minor symptoms, and slowly affects NK cells and lymphocytes, permitting reactivation of other viruses over some time.

The Australian government and the CDC may have already done the study revealing the answer, the "Dubbo" study (Hickie I, Davenport T, Wakefield D, et al. Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study. BMJ 2006;333.)

As you may remember, a small percentage of persons developed ME/CFS after Epstein-Barr virus, Ross River virus or Q fever. They must have saved blood from those who came down with ME/CFS and those who did not. Test the blood for XMRV. If it is in the ones who came down with ME/CFS, but not present in the blood of those people who had regular mononucleosis and quickly recovered, we would have the answer. Ah…if only it were that simple…

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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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——————————————————
© 2009 David S. Bell
——————————————————



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David S. Bell/Lyndonville News
www.DavidSBell.com
12851 Roosevelt Highway
Lyndonville, NY 14098
USA
 

Wednesday, December 23, 2009

ME/CFS is NOT a psychiatric condition

 
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
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>>>>   23 December 2009    <<<<
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From: DEnlander@aol.com




ME/CFS is not a psychiatric
condition.........

Letter to Prime Minister





Derek Enlander M.D.
860 Fifth Avenue
New York NY 10065
212 794 2000
denlander@aol.com



23 Dec 2009




Dear Prime Minister


New medical research, relating to M.E. (myalgic
encephalomyelitis) and the XMRV virus, have
shattered the MRC belief that M.E. is a psychiatric
condition.


The Chief Medical Officer( CMO) and MRC have for
many decades adhered to the idea that these
patients could be lined up as a psychiatric problem.

Certain British psychiatrists used this notion for their
own self interest
in obtaining government research
grants and conflict of interest payment from
disability insurance companies.


The recent M.E. research is not necessarily related
to the resignation of Sir Liam Donaldson from the
post of Chief Medical Officer(CMO) together with the
resignation of the chief executive of the Medical
Research Council, Sir Leszek Borysiewicz.

These resignations however give the present or next
government a chance to clean house.



Both these gentlemen have failed the thousands of
patients who suffer from  myalgic encephalomyelitis
(M.E.), not only failed to recognize their disease but
have gone one step further and labeled them as
psychotic or neurotic.

They have thus been deprived of proper treatment
and relegated to a psychological cognitive training or
worse still a Graded Exercise Therapy (GET), both of
which are defined in medical literature as useless
and in some cases dangerous.


Both these gentlemen failed to react or examine the
motives of psychiatrists promoting these methods.



M.E. is a physical disease and British Medical
establishment must recognize the fact and
underwrite proper research rather that promote
useless psychiatric methods.


Yours Sincerely


Dr Derek Enlander
New York





~~~~~~

Hemispherx comments on Ampligen

 
It should be noted that the term enigmatic means hard to understand or
explain - CFS is actually neither. "We know in part" pretty much describes
all of medicine, but it doesn't automatically make it enigmatic.

Although the research water is muddied by the partially successful
career-long attempts by psychiatric liasons Simon Wessely and Peter Denton
White to use CFS and other similar organic diseases to illustrate the
principles of psychiatrist George Engel's biopsychosocial theory, the
biomedical evidence is no more enigmatic than that of other organic
diseases.

Biomedical researchers have no biomarkers and/or objective tests for
Alzheimer's Disease, Huntington's Disease, diabetes or Parkinson's Disease for example, but no one uses the term enigmatic or enigma to describe them. 
Nor is the etiology of many organic diseases known including that of most of
the diseases listed above, but once again, no one uses the term enigma or
enigmatic to describe any of them.


PHILADELPHIA, Dec. 16, 2009 (GLOBE NEWSWIRE) -- Hemispherx Biopharma, Inc.
(NYSE Amex:HEB) (the "Company"), stated that on December 11, 2009, the
Company, via its manufacturing subcontractor, in Spokane, WA, submitted
comprehensive new data to the regional office of the Food and Drug
Administration ("FDA"), Seattle, WA, which Hemispherx management believes
demonstrate that certain manufacturing issues noted in earlier pre-approval
inspections at the facility have been fully addressed. The referenced
reports on Ampligen(R) (Poly I: Poly C12U), an experimental therapeutic
being developed for potential treatment of Chronic Fatigue Syndrome ("CFS"),
are the combined work-product of the staffs at Hemispherx and its
subcontractor. These are the same manufacturing issues sited in previous
10-Q's and the recent 10-K. These manufacturing issues were also part of a
Complete Response Letter from the FDA described in a December 1, 2009 press
release.

About Hemispherx Biopharma

Chronic Fatigue Syndrome is an enigmatic, profoundly debilitating and
potentially life-threatening disease with which a new retrovirus was
recently associated. Researchers are investigating the possible role of this
virus in the symptomatology of the disease using Ampligen(R) as an
investigational therapeutic.

Hemispherx Biopharma, Inc. is an advanced specialty pharmaceutical company
engaged in the manufacture and clinical development of new drug entities for
treatment of seriously debilitating disorders. Hemispherx's flagship
products include Alferon N Injection(R) (FDA approved for a category of
sexually transmitted diseases) and the experimental therapeutics Ampligen(R)
Oragens(R), and Alferon LDO. Ampligen(R) and Oragens(R) represent
experimental RNA nucleic acids being developed for globally important
debilitating diseases and disorders of the immune system. Hemispherx's
platform technology includes large and small agent components for potential
treatment of various severely debilitating and life threatening diseases.
Hemispherx has in excess of 50 patents comprising its core intellectual
property estate and a fully commercialized product (Alferon N Injection(R)).
The Company wholly owns and exclusively operates a GMP certified
manufacturing facility in the United States for commercial products. For
more information please visit
www.hemispherx.net
 http://www.globenewswire.com/newsroom/ctr?d=180474&l=4&a=www.hemispherx.net&u=http%3A%2F%2Fwww.hemispherx.net .


Information contained in this news release other than historical
information, should be considered forward-looking and is subject to various
risk factors and uncertainties. For instance, the completion of the NDA
filing process with Ampligen(R) and the receipt of a Complete Response
Letter from the FDA do not imply that the Company will be able to
successfully comply with any or all of the requirements requested in that
Letter or that the product will ever be approved for commercial sale. In
addition, the strategies and operations of Hemispherx involve risk of
competition, changing market conditions, change in laws and regulations
affecting these industries and numerous other factors discussed in this
release and in the Company's filings with the Securities and Exchange
Commission. Any specifically referenced investigational drugs and associated
technologies of the Company (including Ampligen(R), Alferon(R) LDO and
Oragens(R)) are experimental in nature and as such are not designated safe
and effective by a regulatory authority for general use and are legally
available only through clinical trials with the referenced disorders. The
forward-looking statements represent the Company's judgment as of the date
of this release. The Company disclaims, however, any intent or obligation to
update these forward-looking statements. Clinical trials for other potential
indications of the approved biologic Alferon N Injection(R) do not imply
that the product will ever be specifically approved commercially for these
other treatment indications; Similarly, the completion of NDA filing process
with Ampligen(R) does not imply that the product will ever be approved
commercially.


Letter to the Editor - "Neurology out-patients with symptoms unexplained..."

Letter to the Editor
SIMON OVERTON
Psychological Medicine, Volume 40, Issue 01, January 2010, pp 172-173
doi:10.1017/S0033291709991413 (About doi), Published Online by Cambridge
University Press 08 Oct 2009

Reply to:
Sharpe, M, Stone, J, Hibberd, C, Warlow, C, Duncan, R, Coleman, R, Roberts,
R, Cull, R, Pelosi, A, Cavanagh, J, Matthews, K, Goldbeck, R, Smyth, R,
Walker, A, Walker, J, MacMahon, A, Murray, G, Carson, A (2009).
Neurology out-patients with symptoms unexplained by disease: illness
beliefs and financial benefits predict 1-year outcome

Can be read for free at:

html version:
http://bit.ly/8q7tVP i.e.
http://journals.cambridge.org/action/displayFulltext?type=6&fid=6778436&jid=PSM&volumeId=40&issueId=01&aid=6778432&fulltextType=LT&fileId=S0033291709991413 

pdf version:
http://bit.ly/6kIxKY  i.e.
http://journals.cambridge.org/action/displayFulltext?type=1&pdftype=1&fid=6778440&jid=PSM&volumeId=40&issueId=01&aid=6778432

If those links I used don't work, follow the link on the home page for the
issue which is a free, open access issue:
http://bit.ly/61jsr1  i.e.
http://journals.cambridge.org/action/displayIssue?jid=PSM&volumeId=40&issueId=01&iid=6778188#  

(The start is a little difficult to read but don't let that put you off.
Well done to Simon. Tom)
 
* * *
 
The last line says it all: "by denigrating a patient's own perceptions of their illness they deny the therapeutic partnership by which any disease may be overcome, irrespective of aetiology."
 
At the hands of doctors who insisted that some anti-depressants and counseling would get me back to work, I simply got sicker.  As soon as I found a doctor willing to prescribe what I really needed, I reversed the years-long decline.  I was accused of not wanting to return to work, when the real issue was that I was not getting what I needed to get back to work. 
 
Had the doctor listened to me at the first appointment, instead of deciding that I was faking, I would've been back to work in a couple months.  Instead, it's been a few months shy of 10 years, and I've been told I'll never recover enough to work full-time again.
 
A therapeutic partnership is crucial to overcoming this disease.  That means doctor and patient working together, not functioning at odds with each other, with one swearing there's a biological reason, a virus, at work and the other nodding his head compassionately while actually believing the only issue is psychiatric.  Finding the XMRV virus has certainly vindicated me, but vindication won't give me the past 10 years of my life back, nor provide a miraculous healing that gets me back to work next week. 

Tuesday, December 22, 2009

IACFS/ME Newsletter

 

IACFS/ME Newsletter

Volume 2, Issue 6 • December 2009

Editor
Rosamund Vallings, MNZM, MB, BS
New Zealand ME/CFS Association
 

             IACFS/ME
    BOARD OF DIRECTORS


    PRESIDENT
    Fred Friedberg, Ph.D.
    Stony Brook University
    Stony Brook, NY

    TREASURER / SECRETARY
    Kenneth Friedman, Ph.D.
    UMDNJ-New Jersey
    Medical School
    Newark, NJ

    Jonathan R Kerr MD,
    PhD, FRCPath
    St George's Univ.
    of London
    Cranmer Terrace, London

    Nancy Klimas, M.D.
    University of Miami
    School of Medicine
    Miami, FL

    Gudrun Lange, Ph.D.
    UMDNJ-New Jersey
    Medical School
    Newark, NJ

    Lee B. Meisel, MD, JD
    Epiphany Biosciences
    San Franciso, CA

    Teruhisa Miike, M.D.Ph.D
    Kohbe, Japan

    Staci R. Stevens, M.A.    
    University of the Pacific
    Stockton, CA

    Rosamund Vallings MB BS
    RD2 Papakura,New Zealand

    Suzanne D. Vernon, Ph.D.
    Charlotte, NC

 


CONTENTS

President's Letter
Welcome Message from Ros Vallings, newsletter editor

XMRV Retrovirus
CFS Advisory Committee Meeting
Survey Request: Send Us the Current Status of CFS/ME in Your Country
Education and Clinical Guidelines
H1N1 and CFS/ME
Medical Student Scholarship for CFS
New Contributors to the Newsletter
Member News

Book Review


IACFS/ME President's Letter

Dear IACFS/ME Members,

Since our August Newsletter, we've had perhaps the most eventful few months in the 25 year history of modern CFS.  In a case-control study published in the October 8th edition of Science, the retrovirus XMRV was linked to CFS/ME.  Principal Investigator Judy Mikovits and her colleagues (sponsored by Whittemore-Peterson Institute [WPI], National Cancer Institute and the Cleveland Clinic Foundation) have produced a level of excitement that only a potential smoking gun could do.  Yet I think caution is the order of the day as replication is required to determine the true significance of this finding.

The hope generated by XMRV combined with the frustration over the Center for Disease Control's (CDC) highly criticized 5 year CFS research plan led to an anything-but-routine meeting of the CFS Advisory Committee in Washington, DC (Oct. 29-30). The meeting was unusually well attended and included a fair number of professionals (including WPI co-founder Annette Whittemore) presenting testimony.   In this issue of the Newsletter, board member Ken Friedman presents more in depth reporting about the meeting which evidenced a rare consensus in the CFS community in opposition to the CDC's $25 million plan.

XMRV and the Safety of the US Blood Supply
The U.S. Department of Health and Human Services (DHHS) has formed an interagency scientific working group on XMRV to determine the prevalence of XMRV in the blood supply.  Given that 3.7% of healthy controls were infected with XMRV in the Science study, the issues of prevalence and possible transmission in the general population are of paramount concern.   This working group will also develop uniform testing procedures for XMRV, a critically important first step prior to large scale studies.  As yet, no timeline has been issued to reach their goals.  Because this group's priority is public health, not CFS mechanisms, they appear to have no particular bias about the role of XMRV in CFS.   Such an independent assessment of XMRV is a welcome development.  

Next Biennial Meeting:  Ottawa, Ontario, Canada;  2011
Ottawa will be hosting our next biennial International Research and Clinical Conference.  This will be our first major conference outside of the US, certainly an overdue development for an international organization.   Ottawa is a beautiful, moderately sized city at the junction of three majestic waterways. As stated on the Ottawa tourism website:  "A cosmopolitan yet surprisingly intimate city; a place where you can immerse yourself in Canadiana and culture".   We should have the exact dates of the meeting shortly.

If you or your organization is interested in sponsoring the conference please contact me (fred.friedberg@stonybrook.edu).

Thank you all for your support.

Happy Holidays!
Fred
Fred Friedberg, PhD
President
IACFS/ME


Message from Ros Vallings, newsletter editor

Welcome to the December edition of the IACFS/ME newsletter. 

XMRV Retrovirus
The past 3 months have been busy and exciting for all those involved in the world of CFS/ME.  On 9th Oct, 2009 an announcement was made in Science that Dr Judy Mikovits and her team at the Whittemore Peterson Institute (www.wpinstitute.org) had found a xenotropic murine retrovirus (XMRV) linked to CFS/ME.  The study reported that over two thirds of patients had the XMRV in their white blood cells compared to only 4% of healthy controls. (www.sciencexpress.org/8October2009/page1
/10.1126/science.1179052
).  This immediately attracted worldwide attention, and as a result, there has been a snowballing of interest in the illness and along with that an upsurge in research.  The studies now need to be replicated in different centres around the world to validate these findings.  It is hoped too that more money will become available to further this research. 

CFS Advisory Committee Meeting
The timing of this potential breakthrough finding was excellent, as the CFS Advisory Committee was meeting in Washington on 29th-30th Oct 2009.  This committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS).  This was a very important meeting and an opportunity for board members to present submissions for future directions.  The complete videocast can be viewed (http://www.hhs.gov/advcomcfs/).  Individual board members' submissions are attached here, with a summary by Dr. Ken Friedman attached here.  We will publish the recommendations as soon as they are available.

Survey Request: Send Us the Current Status of CFS/ME in Your Country
Ken Friedman is also forging ahead to enlarge the ambassadorial membership.  He has invited members and potential ambassadors from around the world to complete and return the survey attached here, which will give us some indication of what is going on in your area.  We can then collate your answers, and get a feeling for how IACFS/ME can be of benefit to members, and promote the sharing of concerns and ideas.  As yet we have not finalized establishment of the Clinicians Internet Group following on from the Reno conference, but meanwhile interested clinicians can still take part in the regular international discussion group established some years ago. (CFS-DOC@LISTSERV.ICORS.org). 

Education and Clinical Guidelines
Education and Clinical Guidelines are very much part of the IACFS/ME role.  This whole area needs review, and we have had useful suggestions from Dr. Alan Gurwitt for improving the CFS/ME education component of our website.  The guidelines committee will convene in the New Year and start working on this. Meanwhile suggestions are welcomed.  It has been suggested that we urgently need to be producing guidelines for management of H1N1 (Swine) flu in relation to CFS.  There is a good management overview written by Dr. Charles Shepherd on the British ME Association website. http://www.meassociation.org.uk/index.php?option=
com_content&view=article&id=1054&Itemid=215


H1N1 and CFS/ME
Thinking about H1N1 influenza is important at this time of year as the northern hemisphere winter approaches.  In New Zealand we had a number of cases during our recent winter flu season, and I have seen 2 cases of CFS following on from this infection, both teenagers.  I wrote up one case study, which is now on line ahead of print and to be published shortly in the Journal of Clinical Pathology (http://jcp.bmj.com/cgi/content/abstract/jcp.2009.071944v1).  Identification of the risk and correct management strategies are obviously important to prevent more CFS cases.  Vaccination against H1N1swine flu will soon be offered and we do need to be producing guidelines for its suitability for CFS patients.  If anyone is interested in becoming involved, please let us know.

Medical Student Scholarship for CFS
The New Jersey Statewide Chronic Fatigue Syndrome Medical Student Scholarship Program was judged recently and the essays submitted were of a high quality.  The winning essay by Madeleine Sterling is attached and can be downloaded here, together with an overview by Ken Friedman about the NJ CFS Association and the scholarship programme.  This provides a wonderful opportunity for promoting interest and education at the student level.  It is an idea that could be encouraged at other universities. 

New Contributors to the Newsletter
During the past few months we have been delighted to receive some contributions to this newsletter from members. Three useful articles are attached: Frank Twisk (Belgium) has sent us a review on CBT and GET in ME/CFS published in Neuroendocrinology Letters, Vol 30 No 3, 2009 (download PDF file here);  Annedore Hoeck (Germany) has sent a version of her article on Vitamin D deficiency in relation to CFS (download PDF file here) and Laurence Felker (Reno) has sent in an article looking at Potential Causal Retroviral Paths in Neuro-immune Stress Disorders (download PDF file here).  These articles all provide a useful basis for further discussion.

In addition to these articles sent in by our members, I have found other articles on related topics which may be of interest and use clinically:  (full references are attached here)

The doctor-patient relationship in chronic fatigue syndrome: survey of patient perspectives
Neuraminidase inhibitors for treatment and prophylaxis of influenza in children.
Undesirable drug interaction in palliative medicine 
Increased D-Lactic Acid Intestinal Bacteria in Patients with CFS
A review of Complementary and Alternative Approaches to Immunomodulation
Assessment and Management of Medically Unexplained Symptoms

These articles should be read critically, and comments for future newsletter discussion will be welcomed.

Member News
Dr. Ellen Goudsmit has been elected a Fellow of the British Psychological Society.  A letter from her is attached here.

Board member Staci Stevens reported that her university department CFS Journal club had been visited by seven senior faculty members and students.  It is hoped that CFS will be viewed in a more positive light in an academic setting. (http://web.pacific.edu/x508.xml)

Dr. Peter Snow the New Zealand GP who first described Tapanui Flu and presented at several IACFS conferences, died in 2006.  He has recently been honoured with a community memorial in Tapanui
(http://www.odt.co.nz/the-regions/southland/38878/
long-serving-district-doctor-be-honoured
).

I have reviewed below the excellent book written by our president Fred Friedberg.  If any of you find books that can be of interest to our members, please send in your reviews for publication in future newsletters.

Please write to us also with your ideas, comments, views, research in your country etc. (Vallings@xtra.co.nz).  We also welcome abstracts for consideration for the Bulletin (greg@iacfsme.org).  If you are interested in representing your country for IACFS/ME please contact Ken Friedman (friedman@umdnj.edu).  If you have information about forthcoming conferences or meetings in your area, please let us know.

Sincerely,
Ros
Rosamund Vallings, MB, BS


Date for your diary:
5th Invest in ME International ME/CFS Conference – 24/5/2010 - London
http://www.investinme.org:80/IIME%20Conference%202010/
IiME%202010%20International%20ME%20Conference%20Home.htm


Book Review  

Fibromyalgia and Chronic Fatigue Syndrome
By Fred Friedberg, PhD

New Harbinger Publications, Oakland, CA. 2006

This excellent book focuses on seven proven steps to less pain and more energy.  There is a good initial overview about the illness and a look at possible causes and lifestyle factors, with a review of some of the psychological styles that can help or hinder management of this illness.

The seven step approach is logical, and based on a combination of good common sense and sound psychological principles.  The steps cover relaxation, sleep, activity, dealing with anger, relieving worry and guilt, experiencing pleasurable feelings and getting support from others.  Making changes when change seems impossible is a helpful and positive strategy.  Finally there are some chapters on how and why medical interventions may not help.  The book emphasises an approach based on healing rather than absolute cure. Included are some case studies as examples using the principles outlined.

This is a very readable and useful manual which I would recommend for health professionals and patients alike.  It would be appropriate also for help in dealing with other chronic illnesses. 

—Ros Vallings, MD

 


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Sunday, December 20, 2009

Activity logs and CFS

 
Activity logs as a measure of daily activity among patients with
Chronic Fatigue Syndrome.

Authors: Jason, L.A., Timpo, P., Porter, N., Herrington, J., Brown,
M., Torres-Harding, S., & Friedberg, F. (2009).

Journal: Journal of Mental Health, 18, 549-556.


Abstract
Background: Self-report data collected through interviews has been one
of the primary ways of assessing symptoms of patients with chronic
fatigue syndrome (CFS).  An alternative way to collect data involves
activity logs, which involves patients writing down the pattern,
intensity, and qualitative nature of activity over several days.

Aims:  We examined the associations between activity, evaluation of
activity and symptoms.

Methods: Activity log data over a two day period of time were used in
the present study using a sample of patients with diagnosed CFS.

Results: Findings indicated that the percent of time spent feeling
fatigued was positively associated with a higher percent of  time in
pain and doing activities that were fatiguing. However, time spent in
meaningful activities was associated with less fatigue.

Conclusions: These findings and others suggest that activity logs can
provide investigators and clinicians with valuable sources of data for
understanding patterns of behavior and activity among patients with CFS.
 
* * *
I found many of my doctors thought that I laid in bed 24 hours a day, while a staff of servants tended to my every need.  Explaining to them that I might only be out of bed an hour or two, but that entire time was spent being active (cooking, cleaning, etc.) and then I had to go back to bed because the activity tired me out made it clear that I was up-and-moving a lot more than they thought.
 
With one doctor, I told him that I walked around the house because I didn't want to risk falling down the front stairs, and he said that wasn't enough.  When I got home, I pulled out my calculator.  My house is long and narrow, with the bedroom/bathroom at one end and the living room/front door at the far end.  I measured the distance from the bedroom to the front door (once for the morning paper and once for the mail) and from the bedroom to the kitchen (at least 3 times a day), and at my next appointment quantified that even on days that I "spent the entire day in bed", I walked about a quarter mile -- if I was on the couch, that would double because I had to walk the length of the house to the bathroom. 
 
The amount of walking I did didn't change, just the doctor's perception of it.  A quarter mile was "a good start".  I assured him that on days that I felt better, I did twice that amount, and on days I felt really good, I'd walk the length of the house several times just for exercise.