Dr. Lynn Mielke finds link between Lyme Disease and autism

wtkr.com, September 29, 2011:

Nineteen-year old Mary Hendricks was diagnosed with severe autism when she was just a baby.

"She had a little bit of language and lost it. A little bit of eye contact and lost it," says her mother Tina.

And that was just the beginning. But the Hendricks' did the best they could and took Mary to doctor after doctor.

A specialist questioned Tina about her own health history and that flipped on the light switch.

"He said the key to diagnosing Mary, is diagnosing you," said Tina.

For years, even before Mary was born, Tina battled colitis, fibromyalgia and just couldn't seem to kick what she says seemed like the flu.

The specialist ordered a blood test for Lyme disease. She tested positive. She got the disease from 2 tick bites she had years before her pregnancy.

"If a child has autism from birth, many times it's because the child inherited an infection from the mother," says Dr. Lynn Mielke.

Dr. Mielke thinks that's exactly what happened to Mary; she calls it "Lyme induced autism.”

Days after Tina’s positive results, ...

Professor Jay Levy: Most health professionals have finally acknowledged that ME is a real and serious illness

The mystery of chronic fatigue syndrome

By Professor Jay A. Levy and Daniel L. Peterson, September 30, 2011:


For more than 100 years, medical literature has contained reports of a debilitating illness that causes prolonged fatigue, memory loss, headaches, cognitive problems and issues with digestion and sleep. Teddy Roosevelt, John Muir and Thomas Eakins all suffered from what was then known as neurasthenia.

At that time, the recommended treatment for women was bed rest; men were advised to head to the Wild West. But neither treatment could be counted on to cure the disease.

Toward the end of the 20th century, doctors came up with the term chronic fatigue syndrome (or, in Europe, myalgic encephalomyelitis) to describe the set of symptoms that used to be called neurasthenia. But we still did not fully understand the illness, nor had we isolated its cause.

Patients have suffered because of this failure to fully understand the disease. Sometimes, doctors attributed the symptoms to anxiety, depression or hypochondria. Employers have been less than sympathetic.

Today, most health professionals have finally acknowledged that chronic fatigue syndrome is a real and serious illness. But ...

Obituary: Anita Burgess, devoted member of Medical Professionals with M.E., passed away Sep 26, 2011 due to complications of ME/CFS

September 29, 2011, Fairmont Sentinel:
INVERNESS, Fla. - ANITA LOUISE BURGESS, age 65, of Clearwater, Fla., and formerly of Fairmont and Welcome, died Monday, Sept. 26, 2011, at HPH Hospice.

Anita Perrine was born to Ardis and Victor Perrine of Fairmont, on Feb. 1, 1946. She lived in Cottage Grove, Minn., and Longmont, Denver, and Littleton, Colo., before returning to Welcome, then moving to Clearwater in 2002. She graduated from Welcome High School as Class of 1964 valedictorian and from the Naeve School of Nursing in Albert Lea, Minn. She worked as a registered nurse. She met her future husband, Jim Burgess, at Camp Birchwood, Conn., in 1968; they divorced in 1984.

Anita was a lover of pets, including basset hound Leonard, collie Laddie, wolf hybrids Myeeta and Teela, and cats Sir Richard and Kitty.

Anita enjoyed relaxing with Kitty in her Florida room, reading, watching Survivor, visiting with her friends, watching wildlife, and playing Scrabble. She was a devoted member of MPWC-ME Inc. (Medical Professionals/Persons with CFIDS/M.E.), an advocacy and support organization for people with chronic fatigue and immune dysfunction syndrome/myalgic encephalomyelitis. She helped found a support group for people with chronic fatigue syndrome and multiple sclerosis in Sherburn and surrounding communities. Anita previously enjoyed playing racquetball, participating in yoga, and hiking in the mountains.

Anita is survived by her sons Todd (Laura) Burgess, of Golden, Colo., and John (Melissa) Burgess, of Evans, Colo.; sisters Rita Williams, of Fairmont, and Sylvia Perrine, of Homosassa Springs, Fla.; brothers Melvin Perrine, of Wyndmoor, Penn., Orvin Perrine, of North Saint Paul, Minn., Larry Perrine, of Brandon, S.D., and Richard Perrine, of Sherburn; and granddaughters Abigail Burgess and Isabel Burgess.

She was preceded in death by her parents.

Online condolences may be sent to the family at www.HooperFuneralHome.com

A celebration of Anita's life is planned for July 2012 in Estes Park, Colo.

CBT psychiatrists are going to feel stupid someday

CBT psychiatrists are going to feel stupid someday, lying in hospitals dying of nothing.

CBT psychiatry's approach to ME: Delay, deny and Hope you die!

Delay, deny and Hope you die! by T.

Photo from We Campaign for ME.

 See also: GET (graded exercise therapy) is torture for ME patients and directly contravenes the do NO Harm principle of the GMC
See also: New Research shows: ME is caused by an oncogenic virus or Invest in ME: PACE trials are bogus science
See also: When CBT fanatico's get ME they run away from silly CBT as fast as possible !!
See also: CFS Patients Try to Help Researchers Despite The Fact that Researchers try To Kill Them with CBT and GET

Professor, meet the only man in the world who doesn't want to see Rihanna topless

By Andrea Magrath, Holly Thomas and Sarah Hajibagheri:

For many men, having a  world-famous pop beauty undress on their doorstep would be a cause for celebration.

But not for farmer Alan Graham, 61, as Rihanna found out when she posed topless on his land for a racy video shoot.

The 23-year-old singer was forced to beat a hasty retreat from Mr Graham’s muddy field in Northern Ireland after he interrupted the filming and told her to cover up.

Read more>>

Dr Ester Crawley: The prognosis for adults with ME is poor

Dr Ester Crawley, who specialises in children with the illness, said:

"The prognosis for adults is poor, but for children it is really good, up to 94% get better." She said the reason for this was unclear, but theories included "neuronal plasticity" - as children's brains are not fully developed, they can heal better.

How ME patients can increase their exercise tolerance

Picture kindly supplied by HR.

See also: Post-exercise acid exposure 50 times higher in ME/CFS patients vs healthy controls, with no reduction with repeat exercise 
See also: The main characteristic of ME is an abnormally delayed muscle recovery after doing trivial things, if you don't have that, you don't have ME 
See also: Journal for Psychotherapy 2011: CBT and GET are ineffective and potentially harmful for many ME/CFS patients See also: PACE trial's Prof Peter White: Exercise causes Immunological damage in Chronic Fatigue Syndrome and is NOT safe
See also: Pacific Labs in California (Snell, Stevens et al): it is dangerous to put patients with M.E. through a graded exercise program
See also: Jan 2011, Spanish study shows that CBT and GET make things WORSE in ME/CFS !!!
See also: GET (graded exercise therapy) is torture for ME patients and directly contravenes the do NO Harm principle of the GMC

Invest in ME: Special screenings of the film Voices from the Shadows at the prestigious Mill Valley Film Festival and in the UK

Invest in ME would like to announce special screenings of the film Voices from the Shadows.

Voices from the Shadowsis a compassionate and moving exposé of the devastating consequences of psychiatric prejudice and medical ignorance regarding myalgic encephalomyelitis (ME) -- a disease twice as common as MS.

The film has been invited to show at the prestigious Mill Valley Film Festival in California, USA, in October, and will not be generally available in UK.


Two special screenings of the film, hosted by UK charity Invest in ME, have been arranged to raise awareness and progress the issues around ME.

The first screening is in Norwich, Norfolk on 2^nd December at 18.30.
Opening the evening will be Dr Ian Gibson.

Invest in ME hope the film will bring increasing support for our proposal for a fledgling UK Centre of Excellence for ME based on an examination and research facility.

The second screening is in London at the Auditorium in the British Library. This will be on Wednesday 7^th December at 18.00.


In order to progress the understanding Invest in ME will invite a number
of influential persons to attend the screening and a panel discussion
will be set up to discuss issues highlighted by the film.

The prices for tickets for these screenings are £10 for Norwich and £20
for London. Refreshments will be served after the screening and discussions.

For more information and to apply for tickets one can register interest
by emailing Invest in ME at info@investinme.org.

The key to resolving, treating and curing ME/CFS lies in biomedical
research. Yet better education is also required for healthcare staff,
for the public, for the media and for governments.
We hope this film will help achieve this and counter the misinformation
and ignorance about this disease which has been allowed to spread.

*Invest in ME*

voicesfromtheshadowsfilm.co.uk 

Voices from the Shadows Trailer:

 

Voices from the Shadows Trailer from Josh on Vimeo.

ME Awards for Prof Leonard Jason, Prof Nancy Klimas, Mary Ann Fletcher, Lydia Neilson, Ekua Brenu and Ellen Piro

Tom Kindlon:

Date:         Sun, 25 Sep 2011 19:48:41 +0100
Reply-To:     Tom Kindlon <[log in to unmask]>
Sender:       ME/CFS and Fibromyalgia Information Exchange Forum
              <[log in to unmask]>
From:         Tom Kindlon <[log in to unmask]>
Subject:      NOT,MED,RES: FW: Day Three Dispatch from the IACFS/ME Biennial
              International Conference: Translating Evidence into Practice
Content-Type: text/plain; charset=ISO-8859-1

F O R   I M M E D I A T E   R E L E A S E

September 24, 2011

Day Three Dispatch from the IACFS/ME Biennial International
Conference: Translating Evidence into Practice
September 22-25, 2011
Delta Ottawa City Centre Hotel, Ottawa, Ontario, Canada

This conference is organized by the International Assocation of
Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) and
hosted by the National ME/FM Action Network.

Day 3 of the conference kicked off with a discussion of case
definitions for research and practice.

Bruce Carruthers, M.D. (a medical advisor with the National ME/FM
Action Network) presented the 2003 Canadian Consensus Criteria, which
he co-authored, and is currently used worldwide as one of the standard
definitions for ME/CFS. Dr. Carruthers said he hopes "that this case
definition and its descendents will continue to emphasize both the
clinical/epidemiological/research realms of observation and challenge
all participants to integrate them into a mutual
confirmation/deconfirmation process that characterizes both clinical
medicine, epidemiology and science in general."

Leonard Jason, Ph.D (Professor, DePaul University, Chicago, IL)
contrasted several competing case definitions, and concluded that the
Fukuda (2004) definition, which is also widely used, may cast too wide
a net, and that a narrower definition may be needed in order to
isolate patients with "a more homogenous and severe symptomology and
functional impairment."

Other sessions presented throughout the day included:

-the role of exercise challenge in testing and diagnosis,
>>>
>>>-the latest research in immunology,
>>>
>>>-new developments in pediatric ME/CFS, and
>>>
>>>-new developments in epidemiology.

The IACFS/ME Awards Banquet was held in the evening, with the
following awards presented:

Governor Rudy Perpich Memorial Award
>>>Leonard Jason, Ph.D
>>>
>>>Nelson Gantz Memorial Award
>>>Nancy Klimas, M.D.
>>>
>>>Junior Investigator Award
>>>Ekua W. Brenu, Ph.D. Candidate
>>>
>>>Research Excellence Award
>>>Mary Ann Fletcher, Ph.D.
>>>
>>>Special Service Award
>>>Lydia Neilson, Founder and CEO of the National ME/FM Action Network
>>>
>>>Special Service Award
>>>Ellen Piro

The proceedings were brought to close by Byron Hyde, M.D., who gave a
speech entitled Ten Important Facts Derived from ME/CFS History and
That Can Improve ME/CFS Research.

TODAY: Day 4 is now underway with discussions on research developments
in genomics and genetics. Today's dispatch will follow this afternoon.

For further information on the conference, including the agendas,
please visit: http://www.iacfsme.org/.
For further information on the National ME/FM Action Network, please
visit: http://www.mefmaction.com/

Media accreditation is available for reporters from any recognized
news outlet. If you wish to send a reporter to this event, just have
them talk to either Rick Merner or Greg Filmore at the registration
table on "LL" (Lower Level) at the Delta Ottawa City Centre Hotel.

Please feel free to contact me if you have any questions or would like
contact information for any of the conference speakers. Dispatches for
the rest of the conference will follow.

James Deagle, Editor-In-Chief,
The Journey: Life & Living with ME/CFS and FMS
A publication of the National ME/FM Action Network

The PACE and FINE Trials have shown that it is time for the Wessely School of Psychoblahblah to leave the field entirely

Professor Wessely over a barrel?

Margaret Williams                  24^th September 2011

On 23^rd September 2011 in its “News Focus”, the journal Science published a chronology of events surrounding the putative relationship of a retrovirus with ME/CFS (False Positive; www.sciencemag.org), in which psychiatrist Simon Wessely was quoted: “People will rather go over Niagara in a barrel than ever getting involved in CFS again”.

His statement is clearly contemptuous about everyone suffering from ME (known by him and his colleagues as “CFS”) and it seems designed to ensure that biomedical research into the disorder will not proceed.  Such overt discouragement of urgently-needed research into ME is contrary to the basic tenet of medicine, which used to be: “First do no harm”.

Professor Wessely’s latest jibe illustrates exactly what should not occur when clinicians are dealing with sick and vulnerable people: “The most shameful behaviour is to engage in a contest of meanings with a patient, denigrating or ridiculing what one does not agree with” (Healing beyond the body – Medicine and the Infinite Reach of the Mind; Dr Larry Dossey; Piatkus Books, 2002). 

Wessely certainly does not agree that biomedical research into ME is needed; he is well-known for his belief that ME/CFS is “somatisation par excellence” (J Psychosom Res 1994:38:2:89-98) and for his British Medical Journal podcast on 5^th March 2010:  “We’re not going to go doing more and more tests to find out what the virus was because, frankly, even if we found it there’s nothing we’re going to do about it.  We’re in the business of rehabilitation” (http://podcasts.bmj/2010/03/05.chronic-fatigue-syndrome).

It is not surprising that Professors Wessely, Peter White and Michael Sharpe, all of whom were involved with the PACE Trial, are held in deep disregard by those whose lives have been wrecked by ME/CFS and who – rightly – are both exasperated and infuriated at repeatedly reading the inane description of their disease as fatigue, with some cognitive impairment, and perhaps a bit of depression thrown in for good measure.

Each and every time that Wessely makes yet another denigratory attack on people with ME, there is a need for attention to be drawn to the reality of ME, which cannot be repeated too often. ME is not “fatigue”, accompanied by a few memory problems and depression, nor is it an aberrant illness belief that has resulted in reversible deconditioning, as the Wessely School maintain. 

ME is a devastating multi-system inflammatory neuroimmune disorder, with ... 

Cause of the month: – please vote for Invest in ME

Please take a moment to vote for one the good causes on our shortlist this month – the cause with the most votes fairly cast at noon on 30th September will win a £200 donation from the fantastic folk at Viking .

Thanks to everyone who nominated this month and big thanks to Viking for continuining to help us support good causes.

Vote for the Cause of the Month for September

• Pathfinder Guide Dog Programme (40%, 87 Votes)
• Invest in ME (39%, 86 Votes)
• Monsters Wheelchair Fund (8%, 17 Votes)
• MS Research (3%, 7 Votes)
• Great Yarmouth Salvation Army Kids Club (3%, 7 Votes)

please vote here for Invest in ME 

GET (graded exercise therapy) is torture for ME patients and directly contravenes the do NO Harm principle of the GMC

The recent PACE trial declared GET safe, but they used the Oxford criteria, which selects people with fatigue caused by depression or burnout and excludes ME patients.

GET is not only very dangerous for people with ME, but many of us have had severe relapses caused by this so-called treatment to the point that many of us, including myself, have been made bedridden 24/7 by GET.

Anybody who knows anything about ME knows that GET equals torture for people with ME.

So GET is not only torture for ME patients, and doctors shouldn't torture patients as you know, it also directly contravenes the do no harm principle of the GMC.

Now I understand that as I am a doctor with ME, you might not believe my account of GET, so let's just have a look at some recent reviews of CBT and GET for ME. But may I remind you first that PACE trial's Prof White has always claimed that these treatments cure at least 25% of people with ME and the Dutch/Belgian CBT doctors have claimed for years that they cure 70%.


Prof White's PACE trial found that no one gets cured by CBT and GET.

The review by Prof Maes showed that these treatments made people worse,

a recent Spanish review again showed that these treatments made people worse

and then there is the recent review of these treatments in the five reference centres in Belgium. The Belgian Prof who set up these centres, is part of the we cure 70% group, yet this review showed again that these treatments make ME patients worse.

The Belgium Prof responded by saying that that is because the expectations of the patients were too high. If a surgeon uses a treatment and claims that he cures 70%, because he has selected his group by using Oxford like criteria, so not selecting the patients he should have selected, and then several reviews show that patients are made worse, then obviously his treatment would be abandoned. The same should obviously finally happen with CBT and GET for ME.

So to ... Read more>>

 See also: Jan 2011, Spanish study shows that CBT and GET make things WORSE in ME/CFS !!!
See also: Journal for Psychotherapy 2011: CBT and GET are ineffective and potentially harmful for many ME/CFS patients
See also: European Parliament approves protective system against CBT psychiatrists
See also: Pacific Labs in California (Snell, Stevens et al): it is dangerous to put patients with M.E. through a graded exercise program

New Research shows: ME is caused by an oncogenic virus

The groundbreaking book by Dr. Melvin Ramsay, describes the outbreak of ME (ME stands for Myalgic Encephalomyelitis) in the Royal Free Hospital in London in 1955.

 The answer to what is causing ME can be found in this book. The only thing one has to do, is read the book and use the thinking part of our brain.

The part which harbors the Pinocchio gene, prevalent in CBT psychiatrists, is destroyed by first undergoing a few sessions of Lightning Therapy. There are few things that stand out if you read the book.

 First of all, chronic fatigue doesn't feature in this book about ME.

 Secondly, the cardinal feature of ME is muscle fatigue, i.e. muscle weakness, with an abnormally delayed recovery, which can take days or weeks, after doing trivial things.

The other thing, which becomes clear straight away is that we've had similar small epidemics, always in closely knit communities.

Dr. Ramsay also described the phenomenon that ... Read more>>

IACFS/ME conference Sept 22, 2011 - Patient Day Summary

by National ME/FM Action Network on Friday, September 23, 2011:
It is 0630 and I am up and ready to begin another day of the conference. I was so tired after spending almost two hours after yesterday’s session with a group of  almost twenty me/fm sufferers sitting around Dr. Leonard Jason pouring out their hearts about their lives while suffering from those illness. Two of those people also had their partners sitting beside them for support which was wonderful to see. I was so tired after that I came to my room and went straight to bed.

The first day began with Dr. Hyde announcing that each participant of the conference will receive compliments of the Nightingale Research Foundation the book The Clinical and Scientific Basis of ME/CFS.  A booklet Definition of Myalgic Encephalomyelitis (ME) was also distributed.  There is also a short book Missed Diagnosis available in print or electronically on Lulu.Com.
Midway into yesterday’s agenda it was unanimously agreed upon that all the information presented at this conference will be available on line and through CD’s.  It is important that everyone involved with promoting the validity of these illnesses, or is it one illness? I believe it is one illness with differences in severity and outcomes, but no doubt that there is enough pathology evidenced now that it would be criminal not to proceed as fast as we possibly can with education and more research.

The stunning facts that Dr. Bested released and aired on CBC  Radio, Ottawa, from the extensive statistical research done by the ME/FM Action Network’s  Margaret Parlor confirms that the increase in the numbers (23% in CFS and 13% Fibromyalgia) with three quarters of  million people inflicted now. These statistics are alarming and should alert government officials that something has to be done and done quickly.

Pathology is showing in people’s blood vessels, From what? Medications? Some drugs like Statins can cause serious pain. why?   Why are there so many atrophied thyroid glands, liver and kidney damage?

Dr. Komaroff  spoke and said “Is it cause of symptoms (effects on the brain))  or is it the cause of the cause of the symptoms that makes “wrong energy metabolism” that we all have to live with and why?  Spec scans show reduced areas of signal cognition for speed memory and attention with autonomic dysfunction, causing sleep disorders and Neuroendocrine problems, affecting possibly every system in our bodies.

Test after test shows abnormality from measuring lactic acid in spinal fluid. There is an increased anerobic metabolism in inflicted patients resulting in higher levels of lactic acid.

Why are there an decreased number of natural killer cells  and increased cytokines, more oxidative stress and damage done to the mitrochondria or  the powerhouse where energy is created in our bodies.

Dr. Jason spoke about ways  for people to deal with this debilitating illness by ...

If patients have to prove that their illnesses are real, then the scientific community should have to prove that mass hysteria is real

Posted by cinderkeys: Hysteria doesn't have any real evidence behind it. Failing to discover a virus or toxin that's making people sick doesn't mean the virus or toxin doesn't exist. It may simply mean we haven't found it yet. Think how many people died of AIDS before anybody knew what HIV was.

 Is hysteria a real thing? Read more>>

 See also: An abnormal odor caused by poisoning is now the trigger "in nearly all episodes of acute mass hysteria," professor Simon Wessely says

Dr Charles Shepherd, medical adviser to the MEA: "it's too early to send out the scientific jury to make a final definitive decision on XMRV and ME/CFS"

Virus link to ME called into question

By James Gallagher Health reporter, BBC News: Scientists who first linked chronic fatigue syndrome, also known as ME, to a virus have withdrawn some of their findings.

They have said some of their findings were based on "contaminated data".

Meanwhile, a study in Science claimed the virus could not be reliably detected in ME patients, even in the labs which originally made the link.

Understanding of chronic fatigue syndrome is poor. It may be many diseases and the causes are uncertain.

There was a sense of hope for many patients when a study published in Science in 2009 showed that DNA from a mouse virus, XMRV, was present in 67% of patients with the illness, but only 4% of the general population.

Yet other scientists around the world could not find evidence of the virus. Many researchers began to argue that the most likely explanation was contamination of the laboratory samples.

It led to Science asking the authors to withdraw their findings and it published an editorial "expression of concern" saying that the validity of the study was "seriously in question".

The authors have now issued a partial retraction after some of the scientists involved reported contamination, but this only calls into question the information in one table and two diagrams, not the rest of the paper and not the final conclusion.

One of the labs involved, the Whittemore Peterson Institute in Nevada, is standing by the conclusion. One of its lead researchers, Dr Vincent Lombardi, said it was "participating" in the retraction but: "We want to make it very clear that we are continuing the important work of studying retroviruses in association with ME/CFS and other similarly complex illnesses.

"WPI's more recent retroviral work, although still in the early stages of discovery, continues to warrant additional investigations."

Meaningless
Dr Jonathan Stoye, virologist at the Medical Research Council National Institute of Medical Research in the UK, said: "I don't think this partial retraction has any meaning, it would have been nice to have a complete rather than a partial retraction.

"They're saying the rest of the paper still stands, but that is becoming increasingly difficult for them to maintain."

A fresh study on XMRV published in Science, which the researchers behind the original study participated in, again questioned the link.

Samples of blood were collected from 15 patients who had previously tested positive for XMRV, 14 of whom also had chronic fatigue syndrome, and from 15 patients without XMRV.

These samples were sent to nine laboratories, including two which had found the link previously. No lab knew which samples were from which patients.

Only two laboratories, the two which initially proposed the link, detected any cases of XMRV. However, the virus was detected at "similar rates" in both groups of patients, the study said.

The results from the two laboratories were also "inconsistent" even when testing blood from the same patient.

Dr Charles Shepherd, medical adviser to the ME Association said: "These are very emphatic negative or inconsistent findings from the Blood Working Group study, along with the retraction of some of the original supporting data that was published in Science.

"So it is now looking extremely unlikely that XMRV is either linked to ME/CFS or that it has a disease-causing role.

"Having had their hopes raised that a treatable component to ME/CFS had been identified, it's not surprising that people are becoming increasingly disappointed at the way things are turning out.

But it's too early to send out the scientific jury to make a final definitive decision on XMRV and ME/CFS - we still need the results from the other major multi-centre study on XMRV and ME/CFS being carried out in America by Prof Ian Lipkin."

See also: Harvard Medical School: EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients 
See also: Cerebrospinal fluid profiles can differentiate between Lyme disease, ME/CFS and healthy controls
See also: Almost 5% of ME/CFS patients contracted ME/CFS from a blood transfusion
See also: The main characteristic of ME is an abnormally delayed muscle recovery after doing trivial things, if you don't have that, you don't have ME 
See also: Post-exercise acid exposure 50 times higher in ME/CFS patients vs healthy controls, with no reduction with repeat exercise

The Committee on Publication Ethics recommends against partial retractions because they are not helpful

Written by ivanoransky September 22, 2011: Partial retractions are rare. We haven’t seen any since starting Retraction Watch in August 2010, although comments by a Duke official suggest a number are on the way in the Anil Potti case.

The closest we’ve come is a Nature Medicine paper that might have been partially retracted, based on the notice, except that the author told us that particular journal doesn’t do partial retractions.

 Partial retractions are rare at Science, too. Bradford tells Retraction Watch this is only the third since she joined the journal’s staff in 1989.

 The Committee on Publication Ethics recommends against partial retractions: Partial retractions are not helpful because they make it difficult for readers to determine the status of the article and which parts may be relied upon.

NIH: XMRV and related viruses not confirmed in blood of healthy donors or chronic fatigue syndrome patients

National Institutes of Health (NIH), Thursday, September 22, 2011:
Source: http://www.nih.gov/news/health/sep2011/nhlbi-22.htm


XMRV and related viruses not confirmed in blood of healthy donors or chronic fatigue syndrome patients

HHS-funded research was part of efforts to determine whether these viruses could affect safety of blood supply

A study supported by the U.S. Department of Health and Human Services could not validate or confirm previous research findings that suggested the presence of one of several viruses in blood samples of people living with chronic fatigue syndrome. The new study also could not find the viruses in blood samples of healthy donors who were previously known to not have the viruses.

The HHS-supported study examined the validity of testing techniques intended to detect the presence of several viruses, xenotropic murine leukemia virus-related virus (XMRV) or related polytropic murine leukemia viruses (P-MLVs). Such follow-up studies are standard in science to determine whether earlier findings are accurate. The new findings suggest earlier results may have resulted from laboratory error, either contamination or false positive test results.

The initial reports of a link between XMRV and chronic fatigue syndrome prompted HHS to investigate how well tests detect XMRV/P-MLVs, and the prevalence and potential transmission of these viruses in the blood supply. If the viruses had been proven to be present in patients with chronic fatigue syndrome or healthy donors, concerns were raised that these viruses could put the blood supply at risk. The new results were published online on Thursday, Sept. 22, 2011 in Science Express.

“The results of this study, along with other recent findings, reassure us that these viruses do not pose a threat to the safety of the nation’s blood supply,” said Susan B. Shurin, M.D., acting director of the National Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health. “These data add to the mounting evidence that there is no need to screen blood donors for them at the present time.”

In the new study, blood samples were taken from healthy donors and from 14 patients with chronic fatigue syndrome who had previously tested positive for XMRV or P-MLV, and samples from another person who had tested positive for XMRV but who did not have chronic fatigue syndrome. The study also used blood samples from healthy volunteers whose blood tests previously had shown no signs of XMRV/P-MLV.

The samples were blinded with no indication as to their source, and sent to nine laboratories. The study involved laboratories supported by several HHS agencies along with Abbott Laboratories, Abbott Park, Ill., GenProbe Inc., San Diego, and the Whittemore Peterson Institute (WPI), Reno, Nev.

The nine laboratories tested identical sets of the new blood samples for the XMRV/P-MLV nucleic acid, for replication of the virus (whether it reproduced itself in cells), and for antibodies to the viruses. Two labs, which previously had reported the association of XMRV with chronic fatigue syndrome, reported the presence of XMRV for some samples. However, ...

XMRV / HTLV integrate into precisely the same nucleotides in infected humans and in vitro cell lines

V99, mecfsforums.com:
http://microb230.med.upenn.edu/PDF%20Library/18369476.pdf

Quote
HTLV-1 Integration into Transcriptionally Active Genomic Regions Is Associated with Proviral Expression and with HAM/TSP


Kiran N. Meekings1, Jeremy Leipzig2, Frederic D. Bushman2, Graham P. Taylor3, Charles R. M. Bangham1*
1 Department of Immunology, Wright-Fleming Institute, Imperial College London, London, United Kingdom, 2 Department of Microbiology, University of Pennsylvania School of Medicine, Philadelphia, Pennsylvania, United States of America, 3 Department of Genitourinary Medicine and Communicable Diseases, Wright-Fleming Institute, Imperial College London, London, United Kingdom
Abstract
Human T-lymphotropic virus type 1 (HTLV-1) causes leukaemia or chronic inflammatory disease in ,5% of infected hosts. The level of proviral expression of HTLV-1 differs significantly among infected people, even at the same proviral load (proportion of infected mononuclear cells in the circulation). A high level of expression of the HTLV-1 provirus is associated with a high proviral load and a high risk of the inflammatory disease of the central nervous system known as HTLV-1- associated myelopathy/tropical spastic paraparesis (HAM/TSP). But the factors that control the rate of HTLV-1 proviral expression remain unknown. Here we show that proviral integration sites of HTLV-1 in vivo are not randomly distributed within the human genome but are associated with transcriptionally active regions. Comparison of proviral integration sites between individuals with high and low levels of proviral expression, and between provirus-expressing and provirus non- expressing cells from within an individual, demonstrated that frequent integration into transcription units was associated with an increased rate of proviral expression. An increased frequency of integration sites in transcription units in individuals with high proviral expression was also associated with the inflammatory disease HAM/TSP. By comparing the distribution of integration sites in human lymphocytes infected in short-term cell culture with those from persistent infection in vivo, we infer the action of two selective forces that shape the distribution of integration sites in vivo: positive selection for cells containing proviral integration sites in transcriptionally active regions of the genome, and negative selection against cells with proviral integration sites within transcription units.


Quote
Supporting Information
Figure S1 HTLV-1 integration in vivo and in vitro is identical at
the nucleotide level. Integration of HTLV-1 in vivo is indistinguishable
from that in vitro at the nucleotide level (in vitro data combined from the
co-culture sites obtained in this report and sites reported byDerse et al


MLVs and HTLV do the same - integrate into the same site!!!!

Dr Robert H. Silverman: XMRV is contamination

Analysis of single nucleotide polymorphisms in XMRV patient-derived integration sites reveals contamination from cell lines acutely infected by XMRV

  Alice Rusmevichientong1, Jaydip Das Gupta2, Petra S. Elias1, Robert H. Silverman2, and Samson A. Chow1,*:

 1 Department of Molecular and Medical Pharmacology, and UCLA AIDS Institute, UCLA School of Medicine, Los Angeles, California 90095 2 Department of Cancer Biology, Lerner Research Institute, Cleveland Clinic, Cleveland, Ohio 44195 *

Corresponding author. Mailing address: Department of Molecular and Medical Pharmacology, UCLA School of Medicine, CHS 23-133, 605 Charles E. Young Dr. South, Los Angeles, CA 90095, USA. Tel: (310) 825-9600. Fax: (310) 825-6267.
E-mail: schow@mednet.ucla.edu 

ABSTRACT We analyzed xenotropic murine leukemia virus-related virus (XMRV) integration site sequences previously identified from human prostate tissues for single nucleotide polymorphisms (SNPs) to discriminate between patient and potential cell line sources of the proviruses. The SNPs of two integration sites were identical to those in cell lines but not the patients, whereas the data on the remaining 12 integration sites were inconclusive. Our results provide direct evidence for contamination during analysis of XMRV integration sites.

See also: XMRV / HTLV integrate into precisely the same nucleotides in infected humans and in vitro cell lines

A Guide to Postural Orthostatic Tachycardia Syndrome

The Dysautonomia Information Network:
Postural Orthostatic Tachycardia is a syndrome. As such, there is a collection of symptoms that distinguish it. The symptoms are widespread because the autonomic nervous system plays an extensive role in regulating functions throughout the body. Many of these symptoms, such as low blood pressure,* may present only after prolonged standing. Symptoms will vary from person to person. The following is a list of symptoms reported by patients. When possible, we have included the percentage of patients that research reports have experienced a given symptom.

Symptoms presumed to be related to cerebral hypoperfusion:**

Lightheadedness  77.6 % (Grubb, 2000)
Fainting or near fainting 60.5% of patients report near fainting (Grubb, 2000)
Generalized weakness 50% (Low et al.)
Symptoms presumed to be related to autonomic overactivity include the following:**

Palpitations 75% (Grubb, 2000)
Tremulousness 37.5% (Low, Opffer-Gehrking, Textor, Benarroch, Shen, Schondorf, Suarez & Rummans, 1995)
Shortness of breath 27.6 % (Grubb, 2000)
Chest discomfort and/or pain 24.3 % (Grubb, 2000)
Sudomotor symptoms include the following:**

Loss of sweating 5.3 % (Low et al.)
Excessive sweating 9.2 % (Robertson, 2000)
Loss of sweating and excessive sweating are more common in patients with elevated norepinephrine levels (Thieben, Sandroni, Sletten, Benrud-Larson, Fealey, Vernino, Lennon, Shen & Low, 2007).

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 POTS symptoms can vary from day to day. They tend to multiply and become exaggerated upon upright posture. Blood flow and blood pressure regulation are also abnormal while supine or sitting, but these abnormalities may not be as apparent and may require orthostatic stress to become evident (Stewart & Erickson, 2002). Some patients do report symptoms occurring while sitting or lying down. Heat, exercise and eating can exacerbate symptoms. Women sometimes report an increase in symptoms around menstruation. If you are suffering from some of the above symptoms, you need to seek professional help. Please do not attempt self-diagnosis. *Some of the above symptoms are specifically related to orthostatic hypotension, traditionally defined as an excessive fall in BP (typically > 20/10 mm Hg) on assuming the upright posture. Not all patients will experience a drop in blood pressure upon standing. Some physicians define orthostatic hypotension as a separate entity from POTS. ** The hypothesized origin of symptoms and their frequency came from the "Postural Orthostatic Tachycardia Syndrome: The Mayo Clinic Experience" by Thieben, Sandroni, Sletten, Benrud-Larson, Fealey, Vernino, Lennon, Shen & Low, 2007. Read more>>

Human nerve cells are susceptible to XMRV virus infection

Susceptibility of human primary neuronal cells to Xenotropic Murine Leukemia Virus-related (XMRV) virus infection.

Virology Journal 2011, 8:443 doi:10.1186/1743-422X-8-443

Corresponding Author: Dr. Indira Hewlett: Veerasamy Ravichandran (veerasamy.ravichandran@fda.hhs.gov)
Eugen O Major (Majorg@ninds.nih.gov)
Carol Ibe (ibec@mail.nih.gov)
Maria Chiara Monaco (monaco@ninds.nih.gov)
Mohan Kumar Haleyur Girisetty (mohan.haleyurgirisetty@fda.hhs.gov)
Indira K Hewlett (indira.hewlett@fda.hhs.gov)

Publication date 20 September 2011

1Laboratory of Molecular Virology, Division of Emerging and Transfusion Transmitted
Diseases, Office of Blood Research and Review, Center for Biologics Evaluation and
Research, Food and Drug Administration, Bethesda, MD 20892, USA; 2Laboratory of
Molecular Medicine and Neuroscience, National Institute of Neurological Disorders and
Stroke, National Institutes of Health, Bethesda, MD 20892., USA

ABSTRACT
Background: Xenotropic Murine Leukemia Virus-related (XMRV) virus is a recently
identified mouse gammaretrovirus that has the ability to infect certain human cells. In this
study, we investigated the susceptibility of primary neuronal cell types to infection with
XMRV.

Findings: We observed that the human primary progenitors, progenitor-derived neurons,
and progenitor-derived astrocytes supported XMRV multiplication. Interestingly, both
progenitors and progenitor-derived neurons were more susceptible compared with
progenitor-derived astrocytes. In addition, XMRV-infected Jurkat cells were able to
transmit infection to neuronal cells.

Conclusions: These data suggest that neuronal cells are susceptible for XMRV infection.

Full ARTICLE .pdf

ICD-9-CM and ICD-10-CM: Feedback from Mary Schweitzer

by XMRV Global Action on Tuesday, September 20, 2011:

There has been a lot of smoke around this subject lately, so since I've spent years on the subject and testified to CFSAC about it, I thought I should share what I know, and what I believe.  (Besides, I don't want to have to write any more emails about it!)

The World Health Organization (WHO) puts out what is called the "International Classification of Disease," so that nations keep comparable statistics on diseases.  About once a decade they revised it, until ICD-10, which took 15 years, and now ICD-11 has already taken more than 20.

Most nations just use the version published by WHO - and that includes the UK.  A few nations (Canada, Australia, Germany, the U.S.) publish their own clinical manual.  The rules they have agreed to as signatory nations is that it is okay to add a disease not in WHO's version, and they may subtract a disease that WHO includes but is not diagnosed in that country.  They are NOT supposed to MOVE a disease into a different chapter altogether, because that would defeat the purpose of having international codes in the first place.  The US versions are called ICD-9-CM and will be called ICD-10-CM.

There are two versions - the "tabular" version, which is organized by category, and the "index," which provides an alphabetized listing of specific medical conditions and directs you to the correct category.  The tabular version is smaller, but the index version is just as authoritative.

For reasons that I cannot fathom, WHO only has the tabular version on Internet.  But I have on my hard drive photocopied copies of the page in the printed index to ICD-10 that relates to CFS.  "Syndrome, Fatigue, Chronic" goes in G93.3.

In 1969, WHO placed M.E. In the neurology chapter, giving it the code 323.9.  They gave it the formal name it was first blessed with in the mid-1950s, "benign Myalgic Encephalomyelitis," because it didn't have a high mortality rate.  However, The late Melvin Ramsay and other British experts immediately discarded the word "benign," because, as Ramsay put it, there was nothing "benign" about this disease!  Why WHO keeps that word is beyond me, but the point is that M.E. had the code 323.9 under neurological conditions from 1969 on.

In 1988, a new name and definition was introduced to the world.  The name was Chronic Fatigue Syndrome, and the definition is known as Holmes 1988 for the CDC epidemiologist who ran an earlier meeting to rename "Chronic Epstein-Barr." NOTHING, not even a footnote, in the Holmes 1988 article mentions M.E. or its American version, epidemic neuromyesthenia.  But that same year the late Stephen Straus of NIAID at NIH published an article tying CFS to epidemic neuromyesthenia - and also to "mental health problems," citing two articles published in the early 1970s in the BMJ insisting that M.E. was really mass hysteria because the outbreaks occurred among female students and nurses living in residential dormitories.  Soon British psychiatrist Simon Wessely had switched that to "neurasthenia" (citing a text written in 1869 - can you imagine the type of medical information available in 1869?  The recommended action for a bullet in the leg was to saw the thing off.).  Straus, Wessely, psychiatrist Peter White, and CDC's head of CFS, Bill Reeves, all juxtaposed the insistence that this disease was psychogenic with statements about it mainly impacting women - they even showed a slide of a woman in Edwardian dress lying back on a fainting couch.  The American version did not use neurasthenia (which is not in DSM-IV), substituting instead "stress" - at first yuppie stress caused by "trying to have it all," later, an inability to handle "stress" caused by childhood traumas.

Chronic Fatigue Syndrome never made it into WHO's ICD-9 because by 1988, WHO was busy working on ICD-10, which was published a couple of years afterwards.  So the US had carte blanche to put it where they wanted to.  Since CDC liked to diagnose it by beginning with "chronic fatigue" and narrowing that down to "chronic fatigue syndrome," CFS was placed in the category "vague signs and symptoms," at 780.71.

Those who have complained that CFS is treated like a "garbage diagnosis" - what's left over after everything else has been ruled out - can point to that designation as the reason.  That is the chapter where you PUT a garbage diagnosis - and it would remain a "garbage diagnosis" in  ICD-10-CM version if it was coded in chapter "R" at R53.82.

When WHO got around to coding CFS, it went into the same category as M.E. and a diagnosis not given that frequently any more, PVFS, or post-viral fatigue syndrome.  That does not mean they are the same thing.  It does mean that WHO considers them similar, and it also means that WHO decided CFS belonged in neurology, not "vague signs and symptoms."

British psychiatrists have tried to use "neurasthenia" (a nervous condition, the vapors, a nervous breakdown)  instead of M.E., but they have been scolded by Parliament for doing so because it violates ICD-10.  So the Peter White/Simon Wessely/Michael Sharpe crowd created the designation "fatigue syndrome," which IS coded to F48.0, or neurasthenia.

Trust me, this game is full of land mines.

ICD-10 was out and in use early in the 1990s.  Canada adopted it soon after the millennium change, but where CFS was only in the index of ICD-10, Canada's version, ICD-10-CA, placed it in the tabular version at G93.3.  Since some Canadian doctors diagnosed M.E. and others diagnosed CFS, the National M.E./FMS Society of Canada brought together an international committee of clinicians to create a CONSENSUS criteria, which was adopted by Canada in 2003.  The document ran 100 published pages with a huge bibliography in the Journal of CFS, but Bruce Carruthers and Marjorie van de Sande wrote a summary, which we all know (and love) as that marvelous multicolored pamphlet that has been handed out all over the world, made available to all by the Canadian ME/FMS Society (with thanks to Lydia Neilson).

If you liked the Canadian Consensus Criteria, you should be pleased with the designation of CFS in G93.3 with M.E., because that is why it exists.

ICD-10 has been out in the world for twenty years now, and WHO is working on ICD-11.  If it were up to me, we would, frankly, just skip ICD-10-CM altogether and wait a couple more years and then adopt ICD-11-CM, but we're not going to do that.

So, what are the choices for ICD-10-CM?

An abnormal odor caused by poisoning is now the trigger "in nearly all episodes of acute mass hysteria," professor Simon Wessely says

By ANDREW MARSHALL Tuesday, Sept. 20, 2011:
Why are hundreds of female workers collapsing at Cambodian factories? And could it have something to do with Pokémon cartoons, "World Trade Center syndrome" and the Tanganyika laughter epidemic of 1962?

Last week a team of experts from the U.N.'s International Labour Organization (ILO) gathered in Phnom Penh to seek an answer to the first question. In the past three months, at least 1,200 workers at seven garment and shoe factories have reported feeling dizzy, nauseated, exhausted or short of breath, and hundreds have been briefly hospitalized. No definitive explanation has yet been given for these so-called mass faintings. One baffled reporter described them as "unique to Cambodia."

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"At any one time there are probably hundreds of episodes happening all around the world," says Simon Wessely, a psychology professor at the Institute of Psychiatry at King's College London. "They just don't normally get reported."

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An abnormal odor is now the trigger "in nearly all episodes of acute mass hysteria," Wessely says. In Cambodia, a bad smell was reported at a factory that makes clothing for H&M before some 200 workers collapsed in two separate incidents in August. But investigations by Cambodian officials, the ILO and H&M "have not found any plausible causes so far," H&M said in a statement. "The workers' health, well-being and safety are of importance to us and we [will] do all we can to find the root causes of the incidents." It dismissed a diagnosis of mass hysteria as "speculating."

ILO experts might yet discover a cause that rules out mass hysteria. (In the 1980s, Puerto Rican garment workers diagnosed with hysteria were later found to have been poisoned.) Nevertheless, a decade of unsolved mass faintings reflects unfavorably on Cambodia's garment industry and the famous Western companies it supplies. "This is a wake-up call for the industry to pay more attention to the well-being of the workers," Poutiainen says. "At the end of the day, they have given a lot to Cambodia."


Read more>>

Study links Gulf War vets' illnesses to area of service

By Kelly Kennedy, USA TODAY:

WASHINGTON - New research to be released Monday shows that veterans with Gulf War illness faced different toxins depending on where they were served: anti-nerve-agent pills and Scud missiles for forward-deployed troops and pesticides for support personnel in the rear.

There's also no correlation between anthrax shots, depleted uranium and psychological issues and Gulf War illness, said the study by the Midwest Research Institute to appear in the Environmental Health Perspectives journal. That supports earlier research on those topics.

"Already, the evidence was mounting for these two exposures," said Lea Steele, lead author and director of Baylor University's Research Initiative on Complex Illness. "When you pull all the research together, you start to see patterns that are very consistent."

About one-fourth of the 700,000 veterans who served in the 1991 Gulf War developed symptoms that include chronic headaches, widespread pain, memory and concentration problems, persistent fatigue, gastrointestinal problems, skin abnormalities and mood disturbances."

Steele and her co-authors surveyed 144 veterans with Gulf War illness and 160 Gulf War veterans with no symptoms. But rather than ask them if they were exposed to depleted uranium or anthrax shots, which many troops did not know, they asked about their experiences: Did you receive an injection in the buttocks in theater? Did you have contact with destroyed enemy vehicles? Were you directly involved in ground combat?

Nerve agents, anti-nerve agents and insecticides come from the same chemical family and, therefore, affect the body in similar ways, Steele said. That's why people may have the same symptoms for different exposures, Steele said. But she said the research also does not discount other possible toxins, such as oil fires or fine particulate matter from dust storms.

"We could have solved this a long time ago if ...

Gamers solve the structure of a retrovirus enzyme whose configuration had stumped scientists for more than a decade

ScienceDaily (Sep. 18, 2011) — Gamers have solved the structure of a retrovirus enzyme whose configuration had stumped scientists for more than a decade. The gamers achieved their discovery by playing Foldit, an online game that allows players to collaborate and compete in predicting the structure of protein molecules.

After scientists repeatedly failed to piece together the structure of a protein-cutting enzyme from an AIDS-like virus, they called in the Foldit players. The scientists challenged the gamers to produce an accurate model of the enzyme. They did it in only three weeks.

This class of enzymes, called retroviral proteases, has a critical role in how the AIDS virus matures and proliferates. Intensive research is under way to try to find anti-AIDS drugs that can block these enzymes, but efforts were hampered by not knowing exactly what the retroviral protease molecule looks like.

"We wanted to see if ...

Dr. Alison Bested: ME/CFS is a deregulation of the immune system

Chronic Fatigue Syndrome: The invisible illness

Chronic fatigue syndrome can turn a hopeful life like Shelley Shellin’s into one of suffering and pain. Although the disease is as common as diabetes, it is often misunderstood. It goes under the microscope at a conference in Ottawa in late September.

By Julie Beun, The Ottawa Citizen September 16, 2011:

For 18 hours a day, Shelley Schellin waits.

She waits to have enough energy to get out of bed. She waits for her body to stop aching enough to get dressed. She waits for friends to stop by and keep her company during her long, lonely days. But mostly, she waits to restart the life that was stolen from her nine years ago.

But after nearly a decade of suffering from myalgic encephalomyelitis, or chronic fatigue syndrome (CFS/ME), so severe that it literally takes a day to recover from an hour of grocery shopping, the life of the strong, vibrant woman who was preparing for a career in natural medicine is now a stone-cold memory.

“It was a busy, hopeful life,” recallsSchellin, 42. “I had a small, close circle of friends. I worked, travelled, did normal activities. I loved going to craft shows and taking evening courses. I would go out for dinner with friends and visit my family outside of the city. Now, life is dramatically different. My dreams and goals are gone.”

It sounds like pitiful stuff, and it would be if coming from someone ending a tragic love affair. But for those suffering from CFS/ME, it’s almost a grotesque understatement.

Believed to be initially triggered by an infection, virus, vaccination, parasitic infection or reaction to environmental toxins, CFS/ME is more or less a dramatic overreaction by the body that puts it into a state of constant ...

Re-inventing ‘CFS’: The main characteristic of ME is an abnormally delayed muscle recovery after doing trivial things

Re-inventing ‘CFS’- the International Consensus Criteria for ME: the Marj Van de Sande Interview
  by CORT on SEPTEMBER 16, 2011:

 Marj Van de Sande: “When I had cancer in 1986-87, I got an upper respiratory infection and became overwhelmingly exhausted. Naturally I thought my energy would be restored after I recuperated from surgery; however, it was ME.”

 Dr. Ramsay: The main characteristic of ME is an abnormally delayed muscle recovery after doing trivial things, if you don’t have that, you don’t have ME