Saturday, October 31, 2009

CDC Admitted to "possible infectious agent" in 1992

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 today¹s proceedings ­ 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
 

  





From the Irish Medical Times

Source: Irish Medical Times
Date:   October 29, 2009
Author: Garrett FitzGerald
URL:    http://www.imt.ie/opinion/2009/10/retrovirus_may_shed_light_on_m.html


Retrovirus may shed light on mystery of chronic fatigue
-------------------------------------------------------

Back in the news big-time is Chronic Fatigue Syndrome. A recent paper
in Science reports infection with a gammaretrovirus (XMRV) in 67 per
cent of cases. The virus has been detected from blood and saliva in
long-term sufferers.

Is it time to apologise to all the patients who were diagnosed as
being somewhat cracked? I recall one colleague referring to the
condition as the Muirisheen Durkan syndrome:
   So, goodbye Muirisheen Durkan
   I'm sick and tired of workin'!

For some unknown reason, I was sent many patients with the syndrome
from all over the country. I was almost always impressed by the
genuine nature of the symptoms, having no doubt that there just had
to be something other than psychological reasons underneath.


I could do nothing for them

I listened (often the consultation lasted more than an hour) and
in most instances after investigation told the patients that they
were probably suffering from CFS/ME. I told them I could do nothing
for them in terms of cure or alleviation. The only contribution I
made was to warn them about the quacks which they (understandably)
were attending or about to attend.

One patient was attending a great man in London, who claimed he was
a physician to the Queen (lucky ol' Queen), who kept admitting the
patient to private hospitals over there for infusions of vitamins
and Lord knows what else.

There was no improvement, surprisingly, in a well-nourished, fruit-
eating young female whose gums were not bleeding onto the tablecloth.
He would tell her that she hadn't had enough courses of the infusions
just yet, to stick with them. The patient had sold her house and was
in the process of selling her car to pay the fees for this
Hippocratic artiste.


Money-mad mountebanks

My intervention did nothing for the symptoms, but the patient got to
hold on to her car. Many fell into the clutches of money-mad
mountebanks, chancers, crystal-ball gazers and three-card-trick merchants. Regrettably, most of these were practicing medical doctors.

Some patients who had previously been leading a fully active and
productive life were reduced to being little better than bed-ridden.
The Royal College of Psychiatrists classified the condition as
(partly) a psychiatric illness about 20 years ago and recommended
courses of psychotherapy.

In earlier papers, there was some response to the sessions, most
patients saying that they were a little better.

Some of my patients were depressed. Their symptoms sometimes
responded to SSRIs, but they were left with their original degree
of fatigue unchanged. Some patients seemed to remit spontaneously
after anything from two to 20 years after the onset of the condition.


Accepted the diagnoses

A rare patient improved substantially with psychiatrist-prescribed
Prozac in doses exceeding 80mg/day. Most did not improve. In
fairness, both the Departments of Health and Social Welfare accepted
the diagnoses of ME/Post-viral Syndrome/CFS as grounds for awarding
disability benefits.

Specialists in Internal Medicine generally recommended a program
which included increasing amounts of physical exercise. My own
experience was that almost none of the patients could walk more than
the length of themselves without 'paying' for it - having to recover
in bed for two or three days.

The ME patients' support group lobbied well for their members, but
were despondent about the future. Many patients felt ridiculed (by
the attitude of some professionals) and concealed the diagnosis. Many
had by then lost their livelihoods and their own self-respect and
self-worth.

One swallow does not a summer make. Before deciding that the
retrovirus is actually causative, we await the outcome of further
studies. If these are confirmatory, we wait for the results of trials
of anti-retroviral therapy. As always, the thinking doctor will be
cautious.





Friday, October 30, 2009

Dr. Lerner on CFS, Exercise & the Heart

 
http://chronicfatigue.about.com/b/2009/10/30/chronic-fatigue-syndrome-exercise-the-heart.htm
(note, visit this link if you want to be able to "click through" live links embedded in the article)

Chronic Fatigue Syndrome, Exercise & the Heart
Dr. A. Martin Lerner: Protecting the Heart
 
Friday October 30, 2009
by Adrienne Dellwo
 
When it comes to chronic fatigue syndrome (CFS or ME/CFS), exercise is a contentious subject. That's because of a symptom called post-exertional malaise; exertion makes symptoms worse. Still, some doctors, researchers, and official organizations recommend graded exercise therapy (GET) as a front-line treatment for the condition -- sometimes ignoring all other treatment options other than possibly cognitive behavioral therapy (CBT). Some people say GET has worked for them, while others say they've been made worse by it.
 
Dr. A. Martin Lerner, an infectious disease specialist who himself recovered from ME/CFS, says anything that raises the heart rate of someone with this condition is dangerous, unless they're well on their way to recovery (at a 7 on his EIPS chart.) He says this is because, in his practice, he's seen that ME/CFS does involve the heart.
 
Dr. Lerner says people with ME/CFS have a rapid heart rate when they're at rest, on top of low blood volume. As the disease progresses, he says, the heart muscle becomes weaker.
 
Dr. Lerner has published studies about an abnormal heart function in people with ME/CFS, showing dysfunction even at normal daily levels of exertion, abnormal movement both at rest and under stress, and T-wave abnormalities distinct enough to provide a diagnosis.
To check for those heart problem in his practice, Dr. Lerner uses ECG (electrocardiogram) and a Holter monitor (a portable monitor you may wear for a couple of days.)
 
For those in the early stages of recovery, Dr. Lerner says, "Certainly, it is helpful to not just let the muscles atrophy, but sitting up is actually a muscular activity." He adds, "Walk, live, but no exercise until you're at a 7, because if you exercise before that you're going to go backwards."
When it comes to gentle exercise that doesn't raise the heart rate, Dr. Lerner seemed fairly neutral, and I spoke to one of his patients who says he did grudgingly OK yoga for her even though she's nowhere near a 7 on the scale. However, she's careful not to do anything that will raise her heart rate.
 
So should you follow some doctors' recommendations to exercise, or heed Dr. Lerner's warnings about cardiac problems? That's a tough question, especially since most doctors wouldn't know what to look for on tests even if they agreed to perform them. Dr. Lerner recommends acquainting doctors with the published, peer-reviewed work done by him and others. If you go to pubmed.gov and type in Lerner AM cardiac, you'll get a list of research abstracts to take to your doctor. You'll also find information on some of Dr. Lerner's heart-related work on his website: Treatment Center for Chronic Fatigue Syndrome.
 
I know -- a lot of doctors will never take the time to educate themselves on this. Here's my idea: start keeping a record of your resting heart rate. If it's high (more than 100 beats per minute), talk to your doctor about the possibility of heart problems. At least that's something that usually gets their attention! Your test results could help you make some very important decisions.
 
More on Dr. Lerner:
    * Universal ME/CFS Evaluation Tool: EIPS
    * Antiviral Protocol for ME/CFS
    * Dr. Lerner on Ampligen, XMRV 





Thursday, October 29, 2009

Facebook | The CFIDS Association of America: Kim McCleary's Statement

 
I am reminded of the first public ICC meeting in 1993, held in Atlanta, at which federal agencies threatened to define CFS out of existence by eliminating the 11 symptom criteria and focusing solely on chronic fatigue. Now, this CDC plan imposes a similar death sentence. We implore the CFSAC to aggressively challenge this plan to protect hard-earned progress of the past 16 years and not waste $25 million that should fuel important research.

In conclusion, the federal resources being applied to CFS must catch up with the magnitude of this condition, and must – at least – match the proportion of private investments. The momentum is building, and the time is now to solve CFS.







Where was CDC for milestone CFS research?

 



Looks like the CDC's chronic fatigue syndrome research group, led by Dr. William C. Reeves, may have some 'splaining to do today in Washington.

A possible research breakthrough — the discovery of a correlation between CFS and a retrovirus related to the AIDS virus — has fired up the medical community in recent weeks. "This is going to create an avalanche of subsequent studies," Dr. William Schaffner, an infectious disease expert at Vanderbilt University, told the New York Times this month.

But will the Centers for Disease Control and Prevention play a role in that research? It hasn't so far. Advocates have been pushing the Atlanta-based CDC for years to fund outside research into a possible viral explanation for the debilitating disease, which afflicts as many as 4 million Americans and perhaps one in 40 adult women.

The agency's role in CFS research could come under the spotlight today, as a federal advisory committee convenes for two days of meetings where the retrovirus findings will be at center stage. Advocates have called for help in packing the meeting to let the committee, whih makes recommendations to Health an Human Services Secretary Kathleen Sibelius, know they want to see action now.

Reeves is a controversial figure in the CFS community, blamed by many for downplaying the severity of the disease and refusing to fund meaningful research into a viral explanation. Just Google him and see for yourself.

Without naming Reeves, the HHS advisory panel in May called for his ouster and for federal health officials to "establish progressive leadership at the CDC that can achieve efficient meaningful progress in CFS research, clinical care and education." Minutes show the committee talked about whether to name Reeves in its recommendation.

"We have heard from the IACFS/ME President, who represents the scientific CFS community, call for new leadership within the CDC's CFS program. We also learned that a CFS patient group has over 1,000 signatures asking for a change in leadership at the CDC's CFS program. Furthermore, we continue to hear complaints from patients during public testimony about a number of issues involving the leadership at the CDC. In addition, a number of patient organizations have called for a change in leadership at the CFS CDC program."

The action came after the world's largest group of medical professionals promoting CFS research made a similar recommendation — in somewhat blunter terms.

CDC's research on the disease "needs … a progessive, open-minded and dynamic manager with a sense of urgency commensurate with the pressing needs of the CFS community," wrote Dr. Fred Friedberg, president of the International Association for Chronic Fatigue Syndrome and Myalgic Encephalomyelitis.

Friedberg called on the CDC's new leadership to give CFS research the urgency it deserves as an "unacknowledged crisis." He criticized the agency's five-year plan for addressing the disease as lacking substance and detail and noted that CDC sponsors no prevention or clinical treatment research.

In Fact, Friedberg wrote, CDC's top researchers didn't even show up at his group's annual meeting this year: "Noticeably absent from our 2009 meeting was the senior leadership from the CDC CFS research program."





Sleep Apnea and Psychology in CFS

Sleep Apnea and Psychological Functioning in Chronic Fatigue Syndrome.

Journal: J Health Psychol. 2009 Nov;14(8):1251-1267.

Authors: Libman E, Creti L, Baltzan M, Rizzo D, Fichten CS, Bailes S.

Affiliation: SMBD-Jewish General Hospital, Concordia University, &
McGill University, Montreal, Canada. <eva.libman@mcgill.ca>.

NLM Citation: PMID: 19858344


Objectives were to explore: (1) whether sleep apnea/hypopnea syndrome
(SAHS) should be considered a chronic fatigue syndrome (CFS)
comorbidity, rather than a diagnostic exclusion criterion; and (2) to
compare sleep/wake/ psychopathology in individuals with CFS, controls
and another illness.

Participants (CFS, SAHS, controls) completed questionnaires and were
evaluated for SAHS; 68 percent were subsequently diagnosed with SAHS.
CFS participants with and without SAHS did not differ. Both clinical
groups were less well adjusted than controls.

We conclude that SAHS should not be an exclusion criterion for CFS
and that psychological problems in CFS seem a consequence of coping with illness.

 







Wednesday, October 28, 2009

The latest from Australia


In October 2009, ME/CFS Australia convened a summit in Canberra where it
made a number of positive decisions related to its future. ME/CFS Australia
wishes to establish its operations so that it can deliver Nationally-focused
programs that will improve the wellbeing of Australians affected by ME/CFS.

Before we get ahead of ourselves, we must engage with the Australian ME/CFS
Community to test our ideas for support and to assess the feasibility of
expansion.

We have established a Blog as a means of connecting with everyone with an
interest in ME/CFS. http://mecfsaustralia.wordpress.com/
The 'About this Blog' page outlines the purpose of the Blog as well as some
basic guidelines. It is an opportunity for the community to comment on posts
and we will respond where appropriate.

To learn a little more about ME/CFS Australia and our plans, please read the
Blog post titled "October 2009 Summit marks a new era". Sign up to the blog
as a measure of support and you'll receive email updates whenever there is a
new post.

If there are any people in the Australian Capital Territory eager to be
involved in Advocacy work, please contact me.


yours sincerely,

Paul Leverenz
Chairman, ME/CFS Australia
pleverenz@mecfs.org.au
http://www.mecfs.org.au/



'Chronic Fatigue Syndrome: la bête noire of the Belgian Health Care System'

'Chronic Fatigue Syndrome: la bête noire of the Belgian Health Care System'
Maes M, Twisk FN.
Neuro Endocrinol Lett. 2009 Aug 26;30(3):300-311.
Maes Clinics, Antwerp, Belgium. crc.mh@telenet.be.

http://www.ncbi.nlm.nih.gov/pubmed/19855351

The World Health Organization acknowledges Myalgic Encephalomyelitis
(ME)/Chronic Fatigue Syndrome (CFS) to be a medical illness. ME/CFS is
characterized by disorders in the inflammatory and oxidative and
nitrosative stress (IO&NS) pathways. In 2002, the Belgian government
started with the development of CFS "Reference Centers", which
implement a "psychosocial" model. The medical practices of these CFS
Centers are defined by the Superior Health Council, e.g. treatment
should be based upon Cognitive Behavioral Therapy (CBT) and Graded
Exercise Therapy (GET); and biological assessments and treatments of
ME/CFS should not be employed. Recently, the Belgian government has
evaluated the outcome of the treatments at the CFS Centers. They
concluded that a "rehabilitation therapy" with CBT/GET yielded no significant efficacy in the treatment of ME/CFS and that CBT/GET cannot be considered to be curative therapies. In case reports, we
have shown that patients who were "treated" at those CFS centers with
CBT/GET in fact suffered from IO&NS disorders, including intracellular
inflammation, an increased translocation of gram-negative
enterobacteria (leaky gut), autoimmune reactions and damage by O&NS
.
Considering the fact that these findings are exemplary for ME/CFS patients and that GET may even be harmful, it means that many patients are maltreated by the Belgian CFS Centers. Notwithstanding the above,
the government and the CFS Centers not only continue this unethical
and immoral policy, but also reinforce their use of CBT/GET in
patients with ME/CFS treated at those Centers.
 







Alpha Dog: NIH, CDC and CFS

Tantalized by the opportunity to make a difference the ME/CFS community let
loose on the CDC over the past year. To its credit the CDC's review process
allowed for that.
Missing the Forest for the Tree - The CDC, however, is not the main game in
town - they're not the alpha dog we vitally need to tame - not at all.
Perhaps because they've made more blatant errors than anyone else the CDC's
has always assumed an outsized importance in the chronic fatigue syndrome
community's mind.
There's certainly no disagreeing that they're important - they are; they're
tasked with  doing  research, interacting with public health officials,
educating physicians education, documenting prevalence and costs,
identifying risk factors , etc.  but they are not our most important federal
agency; in fact they're not even close.....
Check it out in "Alpha Dog" the latest edition  of 'Bringing the Heat'
http://aboutmecfs.org/blog/?p=1014
 




 

Special Thanks to MAME

October 27, 2009
Contact: Jeanharrison@mame-net.org

Mothers against Myalgic Encephalomyelitis (MAME) Issues Reminder of
Forthcoming Meeting of the Chronic Fatigue Syndrome Advisory Committee now
Accessible to People with CFS
                  
(Salem, MA)  MAME wants to remind those interested that the Chronic Fatigue
Syndrome Advisory Committee¹s (CFSAC) next meeting on October 29, 2009 will
be videocast for simultaneous viewing on the Internet at 9AM EDT by
connecting to http://videocast.nih.gov.   This, the second such simulcast,
comes as the result of MAME¹s five year campaign to enable people with CFS
(PWC¹s) to observe the exchange of information between the CFSAC, assembled
experts and advocates.  Many PWC¹s are physically unable to attend these
meetings because of inability to travel to Washington D.C., let alone attend
two consecutive days of meetings.  The videocast enables them to view the
meetings either in real time or in archived segments, as their illness
allows.  PWC¹s can then communicate with the CFSAC immediately, if need be,
to corroborate, correct misinformation and challenge assertions.  In the
past, PWC¹s were obliged to await the release of CFSAC meeting minutes, some
of which were distributed months later.  Too often, comments or questions
from PWC¹s were given little attention particularly due to the passage of
time and the CFSAC¹s sense of more pressing current business. That changes
with videocasts.

MAME¹s formal campaign for access began as request for accommodation under
Section 504 of the Disability Act of 1973, initiated in June 2004.  MAME
asked for videotaping of the meetings for transmittal by DVD or
videostreaming, which the National Institutes of Health already did for
other committees at the time.  The CFSAC, concerned about privacy and cost,
rejected this.

MAME then filed a formal complaint in December 2004 with the US Office of
Civil Rights (OCR) which enforces Section 504.  OCR took over one year to
act on the complaint which it dismissed, prompting MAME¹s rebuttal of OCR¹s
action.  OCR must respond to such rebuttals within 180 days.  However, OCR
failed to respond in spite of MAME¹s repeated telephone inquiries.  MAME
pursued other alternatives including political organizing and raising funds
to retain counsel to sue OCR. These actions consumed time and effort on the
part of MAME as well as other Disability Rights advocates such as Wisconsin
CFS Association, PANDORA, Florida-based CFS advocates, and VT- CFIDS, who
coordinated ³empty seat² projects.  Still, near the end of 2008 there was no
OCR response, clearly a violation of PWC¹s civil rights.

In November 2008 Dr. Wanda K. Jones, Deputy Assistant Secretary for Health
in the US Department of Health and Human Services, and head of the Office of
Women¹s Health (OWH), became the designated federal officer  for CFSAC.
Moving CFSAC to OWH improved the logistical and technical support for the
CFSAC¹s work.  MAME saw immediate results when contacting Dr. Jones in April
2009 to share MAME¹s 2004 request to the CFSAC.  She saw the legitimacy
under Section 504. Within days, she arranged to videocast the May 28-29
meetings of the CFSAC.  That videocast is now archived on the NIH website
enabling PWC¹s worldwide to view it and subsequent meetings, and offer
timely comments, suggestions, and resources.  For this reason, MAME
encourages PWC¹s and others to take advantage of the forthcoming videocast
on October 29, 2009 at 9AM (EDT).  MAME¹s President, Jean Harrison, ³thanked
Dr. Jones for breaking the logjam² allowing a significant victory for people
with disabling medical conditions, who seek to participate in the
proceedings of committees charged by the Federal Government to investigate
and take steps to address their medical conditions.   This, along with the
exciting research at the Whittemore Peterson Institute provides PWC¹s with
welcome inspiration.

 






 

Tuesday, October 27, 2009

IACFS/ME Call for Papers

The Bulletin of the IACFS/ME is now accepting manuscript submissions
for the upcoming winter issue.

The Bulletin of the IACFS/ME is a peer review online journal that accepts original research papers, case reports, short notes for rapid communication, reviews of the literature, and book reviews to stimulate scientific knowledge and debate. Letters to the Editor are also welcome. Submissions are encouraged for (a) illness-related fatigue (CFS, cancer, cardiac disease,MS, depression, etc.); (b) non-disease fatigue, and (c) occupational fatigue.

http://cts.vresp.com/c/?IACFSME/35334ed2e4/99866f400e/34f7797542 http://cts.vresp.com/c/?IACFSME/35334ed2e4/99866f400e/ec5eab7bcc http://cts.vresp.com/c/?IACFSME/35334ed2e4/99866f400e/a9fcbb7436

QUESTIONS: email greg@iacfsme.org

 
 
 

The International Association for CFS/ME
27 N. Wacker Drive Suite 416 Chicago, IL 60606
847-258-7248
Fax: 847-579-0975
Email: Admin@iacfsme.org

 

 





Latest on XMRV testing

  I wanted to see who else what doing what re: testing kits for XMRV.
  
  1.  REDLABS U.S.A is now VIP Dx – Viral Immune Pathology Diagnostics.  I have searched their website and was unable to find any mention of test kits for XMRV.
  
  2.  A few people have mentioned that they somehow received testing for XMRV at the PWI yet this is the latest information from their FAQ's under XMRV on their website:

  
  Q: Where can I get tested for XMRV?

  

  A: The WPI has developed a blood test for the detection of XMRV and we are currently negotiating an agreement with a clinical laboratory to allow for limited testing. These services will be made available as soon as possible and we will provide information on this site as to how the test can be requested. We cannot offer individual testing and results from our research lab. Please check back here for updates.
  


  From: Tom Kindlon 

  FWIW
  (I have no financial interest)

  http://tinyurl.com/ykforsh
  i.e.
  http://community.advanceweb.com/blogs/mt_1/archive/2009/10/26/company-releases-xmrv-assay.aspx

  ADVANCE Outlook: Lab Professionals

  Company Releases XMRV Assay

  Published October 26, 2009 12:24 PM by Amanda Koehler

   Cooperative Diagnostics LLC, Greenwood,
  SC, recently announced the availability of a new diagnostic assay for
  Xenotropic Murine Leukemia-Related Virus (XMRV) to assist physicians in the
  diagnosis of chronic fatigue syndrome and other disorders potentially caused
  by the virus. Testing services will also be made available to the general
  public, according to a company press release.

  The Simplex XMRV test identifies patients infected with XMRV. XMRV has been
  recently identified in 95 percent of chronic fatigue syndrome patients, in
  addition to large numbers of patients with fibromyalgia, atypical multiple
  sclerosis and other clinical conditions.

  "This may well be the fulfillment of a promise I made a number of years ago
  to two good friends, who both became ill from chronic fatigue syndrome. I
  saw firsthand the mental anguish they endured by those closest to them,
  including the medical community, as they were told their condition could be
  psychological, " said Brent C. Satterfield, PhD, president and CEO of
  Cooperative Diagnostics LLC. "When we learned XMRV might have such a high
  association with chronic fatigue syndrome, we immediately became interested
  in developing a test. Now, my two friends and everyone else who has suffered
  from the condition can take testing for XMRV into their own hands."

  The Cooperative Diagnostics XMRV test is based on its proprietary real-time
  PCR nucleic acid detection technologies. It is capable of detecting the
  virus inside of blood cells. The test is available to the public at
  www.codiagnostics. com/XMRV/ index.php for $399.

  In order to provide quality testing in a high throughput environment,
  Cooperative Diagnostics has contracted Clinical Reference Laboratory (CRL)
  Inc. to process these assays.

  CRL's Executive Director of Molecular Diagnostics, Dr. Heather Newkirk,
  said, "This unique technology from Cooperative Diagnostics enables a
  powerful detection product which synergizes well with CRL's expertise in
  offering quality molecular services. We look forward to working with
  Cooperative Diagnostics to provide quality services."
 





 

CBT/GET is not only ineffective, but potentially harmful

'A review on cognitive behavorial therapy (CBT) and graded exercise
therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue
syndrome (CFS): CBT/GET is not only ineffective and not
evidence-based, but also potentially harm'
Twisk FN, Maes M.
Neuro Endocrinol Lett. 2009 Aug 26;30(3):284-299.
ME-de-patiënten Foundation, Limmen, the Netherlands, the Netherlands.

http://www.ncbi.nlm.nih.gov/pubmed/19855350


Benign Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS)
is a debilitating disease which, despite numerous biological
abnormalities has remained highly controversial. Notwithstanding the
medical pathogenesis of ME/CFS, the (bio)psychosocial model is adopted
by many governmental organizations and medical profes-sio-nals to
legitimize the combination of Cognitive Behavioral Therapy (CBT) and
Graded Exercise Therapy (GET) for ME/CFS. Justified by this model CBT
and GET aim at eliminating presumed psychogenic and socially induced
maintaining factors and reversing deconditioning, respectively. In
this review we invalidate the (bio)psychosocial model for ME/CFS and
demonstrate that the success claim for CBT/GET to treat ME/CFS is
unjust. CBT/GET is not only hardly more effective than
non-interventions or standard medical care, but many patients report
that the therapy had affected them adversely, the majority of them
even reporting substantial deterioration. Moreover, this review shows
that exertion and thus GET most likely have a negative impact on many
ME/CFS patients. Exertion induces post-exertional malaise with a
decreased physical performan-ce/aerobic capacity, increased
muscoskeletal pain, neurocognitive impairment, "fatigue", and
weakness, and a long lasting "recovery" time. This can be explained by
findings that exertion may amplify pre-existing pa-thophysiological
abnormalities underpinning ME/CFS, such as inflammation, immune
dysfunction, oxidative and nitrosative stress, channelopathy,
defec-tive stress response mechanisms and a hypoactive
hypothalamic-pituitary-adrenal axis. We conclude that it is unethical
to treat patients with ME/CFS with ineffective, non-evidence-based and
potentially harmful "rehabilitation therapies", such as CBT/GET.

Monday, October 26, 2009

Log on and Watch LIVE

***Please distribute far and wide!***

For those who won't be attending the CFSAC meeting, be sure to tune in to
the videocast of the CFSAC meeting on October 29th and 30th at the following
links:

Day 1

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

Day 2

http://videocast.nih.gov/summary.asp?live=7909

***The number of computers logging on and watching will be counted by the
NIH. Let's make those figures count for something!***

For those who can't watch live, archived video will be available at:

http://videocast.nih.gov/PastEvents.asp





What next for the psychologizers?

Will Dominos Fall?

John Herd
johnherd@johnherd.com


With the advent of the Whittemore-Peterson Institute's XMRV research 
we may be entering a new and more relevant era of research of our 
illness.

So will it put the medical fantasies about the illness to rest?

And what of the likes of Simon Wessely and Michael Sharpet whom have 
both created and perpetuated those fantasies under the guise of 
supposed science?

For decades the psychiatric profession has been increasingly trying to 
elevate itself by portraying psychiatry as pure science. They have 
been like the somewhat dysfunctional child who wants to be seen on the 
same tier as other medical professions, to elevate psychiatric and 
psychological conditions to the same tier as medical conditions.

Let's accept for the sake of discussion that the road to credibility 
is pure science.

So what of research psychiatrists such as Simon Wessely and Michael 
Sharpe now? They have professed to be using that 'pure science' to 
define ME/CFS. We've seen them generate lots of data shrouded in 
supposedly pure science.

What happens now that Simon Wessely's and Michael Sharpe's theories 
about ME/CFS and supposed science are being scientifically proven to 
be nothing more than tainted data conducted and created to support 
preconceived flawed theories?

What does the so scientifically oriented psychiatric research sector 
do now that it is becoming evident that two of their own have 
corrupted 'the science' so profoundly?

Do the psychiatric sector, academic medical sector and government 
health sector distance themselves from such corruptors of science?

That is usually what happens in science when an investigator is shown 
to have been generating corrupted data.

Will Simon Wessely and Michael Sharpe be cut loose, on their own to go 
down in history as having egg on their faces?

Or will the psychiatric research, academic medical and government 
health sectors rally around to protect their own, only making the 
whole matter more scientifically reprehensible?

As we enter this new era of ME/CFS research it is not enough to let 
the gradual progress of science illuminate the contradictory nature of 
Simon Wessely's and Michael Sharpe's decades long campaigns.

As research progresses we advocates, activists and patients must bring 
the contradictions to the doorsteps of psychiatric research, academic 
medical, government health, and media sectors.

Researcher's time is best spent researching. While under some 
circumstance we need their voices, the are wise to for the most part 
steer clear of the politics; that is up to us. If we do so effectively 
we can open the doors to more needed research in the days and months 
ahead.



Sunday, October 25, 2009

Hill takes on Bill

 

"Was anyone else, like me, wondering how the little agency in Atlanta would handle the news on October 9, 2009 that revealed it to be both criminally incompetent and scientifically irrelevant?
For the moment, I'm using the word "criminal" informally; I don't think we or they yet know for certain what is and is not prosecutable. I have no doubt it will be sorted out, and sooner rather than later. I'm guessing counsel for both CDC and NIH have been working overtime; the flop-sweat might actually be visible on some of those government brows in Washington next Thurdsay and Friday."

"That Reeves is still allowed to even open his mouth when a reporter calls Atlanta signifies how confused the agency must have been when this news broke. It must have been chaos down there, actually."

"There isn't anything Reeves said [to the press] that was scientifically correct," one of the scientists associated with this work told me recently."

Reeves Must Go

  From: RESCIND <rescindinc.org@gmail.com>

  ***Please distribute far and wide!***

  Support the 500 Professionals of
  the IACFS/ME - Reeves Must Go

  On May 27th and May 28th, 2009, the Chronic
  Fatigue Syndrome Advisory Committee (CFSAC)
  convened in Washington, D.C. Among their
  recommendations to the Secretary of Health and
  Human Services was a call for new and progressive
  leadership at the CDC's ME/CFS research division.

  We, the public, need to back the IACFS/ME and the
  CFSAC. Under Bill Reeves' regime, funding has
  routinely decreased and increasingly broad
  definitions which have ceased to have any clinical
  meaning or research value have been implemented.

  Under Reeves' direction the CFS program is being
  slowly strangled.

  A couple of weeks ago, Dr. Judy Mikovits, who is a
  retrovirus expert at the Whittemore Peterson
  Institute, released the results of a study which
  provided overwhelming evidence that xenotropic
  murine leukemia virus-related virus, or XMRV, could
  very well be the third human retrovirus.

  Mikovits found that in a study of 101 CFS patients,
  67% were found to have XMRV in their cells, but this
  is really not new news. In 1991 Dr. Elaine Defreitas
  found retroviral DNA in 80% of her study's 30 CFS
  patients. The CDC "replicated" her study, did not
  follow her exact procedure, and ended the study
  prematurely while ostracizing Defreitas.

  What does Reeves say about Mikovits recent
  discovery? Without doing any study or due diligence
  Reeves dismisses the findings by saying that they
  are "unexpected and surprising" and that it is
  "almost unheard of to find an association of this
  magnitude between an infectious agent and a
  well-defined chronic disease, much less an illness
  like CFS."

  Deceit and incompetence have increasingly become
  the order of the day. The money that Bill Reeves has
  been receiving has been terribly mismanaged as he
  desperately strives to forestall the slow but
  inevitable pace of biomedical research.

  Inappropriate management of funds prevents
  collaboration with biomedical experts, as well as
  collaboration with psychosocial experts who are not
  trying to build a career in psychosomatic medicine.
  Bill Reeves must be held accountable.

  Inaccurate stereotypes persist because Bill Reeves
  has not been accurately educating the public on the
  seriousness of this disease.

  CFS is not a disease of "feeling a little tired," no
  matter what you call it; this is a severe neuro-
  immune disease of among other things, debilitating
  exhaustion completely out of proportion to exertion.
  Patients may be too exhausted to even be able to
  chew their food, leave their beds and much less even
  work - and remain so year after year. Is that your
  neighbor's experience of tired?


  Perhaps you suffer from CFS, perhaps your patients
  do, or perhaps a loved one does; your best interests
  are not and have not been at the heart of the CDC's
  program. What's at the heart of the program is job
  security for Bill Reeves, his paycheck and
  collaboration with his pals - not finding ways to
  combat and track this horrible disease.

  We need you now more than ever. Right now is the
  first real chance that we have had in nearly 30 years
  to fight Reeves in force; to fight for you, your loved
  ones, or your patients. Everyone from researchers to
  advocates are in agreement - Reeves must go. And
  we must make it happen. No one will do it for us.

  Join members of the IACFS/ME at the CFSAC's
  October 29-30th meeting in Washington, D.C. Do not
  let the hard work of other advocates and researchers
  over the years be for nothing. We need to show that
  we cannot be silenced and we will never give up.

  If you cannot personally attend, find someone to
  attend in your place. Ask your parents, your children,
  your spouses or friends to attend in your place. Ask
  your elected officials to have aids attend.

  The answer is always no if you don't ask - we must
  make it happen - none of us can live with the
  alternative.

  Reeves must go.






More on "Medically Unexplained Symptoms"

From Suzy Chapman

25 October 2009


Availability of EACLPP white paper

With reference to:

http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0910d&L=co-cure&T=0&F=&S=&P=3374

the In Press version of the Editorial:

Is there a better term than "Medically unexplained symptoms"? Creed F,
Guthrie E, Fink P, Henningsen P, Rief W, Sharpe M and White P

to be published in a forthcoming issue of the Journal of Psychosomatic
Research (already available online - purchase required) needs to be read in
conjunction with the white paper to which I drew attention, in July:

The European Association for Consultation-Liaison Psychiatry and
Psychosomatics (EACLPP) http://www.eaclpp.org/

"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"  (Gillian.D.Dunkerley@manchester.ac.uk  )

The White Paper can be downloaded from the EACLPP site here:
http://www.eaclpp.org/working_groups.html

The document is approx 76 pages long, including tables and charts.  I had
considerable difficulty opening this document, in May, due to a corrupted
table and note that the file on the EACLPP site remains glitchy. A copy
of the document was obtained directly from the EACLPP, in May, and has been
uploaded to ME agenda site. Note that there may be some revisions to the
document as supplied in May but it will serve as reference if others
experience difficulties opening the file from the EACLPP website.

If you would like a copy of the file as a Word.doc attachment, please email
with "EACLPP MUS DOC" in the subject line and I will forward a copy to you
[600 KB].

Or download Draft white paper- prepared by Peter Henningsen and Francis
Creed January 2009 from ME agenda WordPress site at:
http://wp.me/p5foE-2d6


The Editorial 'Is there a better term than "Medically unexplained
symptoms"?' discusses the deliberations of the EACLPP study group:

"Introduction

The European Association of Consultation Liaison Psychiatry and
Psychosomatics (EACLPP) is preparing a document aimed at improving the
quality of care received by patients who have "medically unexplained
symptoms" or "somatisation" [1]. Part of this document identifies barriers
to improved care and it has become apparent that the term "medically
unexplained symptoms" is itself a barrier to improved care
...

...The authors of this paper met in Manchester in May 2009 to review
thoroughly this problem of terminology and make recommendations for a
better term....The deliberations of the group form the basis of this
paper..."

[...]

"Our priority was to identify a term or terms that would facilitate
management - that is it would encourage joint medical
psychiatric/psychological assessment and treatment and be acceptable to
physicians, patients, psychiatrists and psychologists."

[...]

"Terms suggested as alternatives for "medically unexplained symptoms"

The group reviewed terms which are used currently or have been proposed for
the future. An extensive list was abbreviated to the following 8 terms or
categories: The terms we reviewed were:

1. Medically unexplained symptoms or medically unexplained physical
symptoms
2. Functional disorder or functional somatic syndromes
3. Bodily distress syndrome/disorder or bodily stress syndrome/disorder
4. Somatic symptom disorder
5. Psychophysical / psychophysiological disorder
6. Psychosomatic disorder
7. Symptom defined illness or syndrome
8. Somatoform disorder"

[...]

"Implications for DSM-V and ICD-11

There is overlap between the discussion reported here and the discussion
currently under way towards the creation of DSM-V. Two of the authors (FC,
MS) are also members of the working group on Somatic Distress Disorders of
the American Psychiatric Association (APA), which is proposing a new
classification to replace the DSM-IV "somatoform" and related disorders. In
this working group, similar concerns about the use of the term and concept
of "medically unexplained symptoms" have been raised [12]. The current
suggestion by the DSM-V work group to use the term "Complex somatic symptom
disorder" must be seen as step in a process and not as a final proposal.
Unfortunately this term does not appear to meet many of the criteria listed
above."

[...]

"One major problem for reforming the classification relates to the fact
that the DSM system includes only "mental" disorders whereas what we have
described above is the necessity of not trying to force these disorders
into either a "mental" or "physical" classification.
The ICD-10 system has
a similar problem as it has mental disorders separated from the rest of
medical disorders.

The solution of "interface disorders", suggested by DSM IV, is a compromise
but it is unsatisfactory as it is based on the dualistic separation of
organic and psychological disorders and prevents the integration of the
disorders with which we are concerned here. This lack of integration
affects the ICD classification also. For example functional somatic
syndromes (e.g. irritable bowel syndrome) would be classified within the
"physical" classification of ICD or Axis III in DSM (gastrointestinal
disorders) and omitted from the mental and behavioural chapter entirely
[13]."

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

DSM-V Task Force member, Javier Escobar, MD, who works closely with the
DSM-V Somatic Distress Disorders Work Group, has alleged that "Functional
Somatic Syndromes" (FSS), or "Medically Unexplained Symptoms" include a
long list of medical conditions:

"Irritable bowel syndrome, Chronic fatigue syndrome, Fibromyalgia, Multiple
chemical sensitivity, Nonspecific chest pain, Premenstrual disorder,
Non-ulcer dyspepsia, Repetitive strain injury, Tension headache,
Temporomandibular joint disorder, Atypical facial pain, Hyperventilation
syndrome, Globus syndrome, Sick building syndrome, Chronic pelvic pain,
Chronic whiplash syndrome, Chronic Lyme disease, Silicone breast implant
effects, Candidiasis hypersensivity, Food allergy, Gulf War syndrome,
Mitral valve prolapse, Hypoglycemia, Chronic low back pain, Dizziness,
Interstitial cystitis, Tinnitus, Pseudoseizures, Insomnia, Systemic yeast
infection, Total allergy syndrome" [1]

[1] PSYCHIATRY AND MEDICAL ILLNESS
Unexplained Physical Symptoms What's a Psychiatrist to Do?
Humberto Marin, MD and Javier I. Escobar, MD
01 August 2008, Psychiatric Times. Vol. 25 No. 9

Special Report
http://www.psychiatrictimes.com/display/article/10168/1171223


Suzy Chapman
_____________________

me.agenda@virgin.net
http://meagenda.wordpress.com
http://twitter.com/MEagenda