Monday, January 31, 2011

20 years ago this scientist found a retrovirus in CFS/ME patients

20 years ago this scientist found a retrovirus in CFS/ME patients. The CDC would not publish her work, but she did patent her findings. Her career was soon over. Read more>>

Great news for Arsenal fans!


Arsenal fans! Arsene Wenger has just bought some wine gums. Just thought I'd keep you updated on TransferDeadlineDay

People with severe illnesses are living on £60 a week because they are fit to work says ATOS

Peter Magill, Chief reporter,, Tuesday 25th January 2011:

A BURNLEY grandmother says she can barely afford to eat after becoming a victim of the Government’s benefits crackdown.

Iris Willis, 51, from Rosehill, who has chronic fatigue syndrome, has been living on £60 a week after failing a medical for Employment Support Allowance (ESA).

She said it was only the support of her family, providing food parcels, that had enabled her to survive since then.

Mrs Willis, who organised a protest outside Burnley Town Hall as part of a national day of action, said: “The protests are aimed at ATOS, which carries out the medical assessments for the Department of Work and Pensions.

“When I was first put on ESA, the level of my benefits was raised because they said I was more incapacitated then normal. Read more>>

Breaking News: Torres to Chelsea deal breaks down

By AK_S_ :

Breaking News: Torres to Chelsea deal breaks down after John Terry fails to agree terms with Torres' wife!

Doctor Challenges Cause Of MS And Treatment

by GRETCHEN CUDA KROEN,, January 31, 2011

One day 7 years ago, after a long walk with his dog along the Hudson River in Manhattan, Marc Stecker noticed he was limping. Not long after, he was diagnosed with multiple sclerosis.

"Fast forward now, and my entire right side is pretty much paralyzed and my left side is weakening," Stecker says.

Stecker is now confined to a wheelchair, from where he writes a blog about his disease, called Wheelchair Kamikaze.

More than a year ago, Stecker started writing about a theory Italian physician Paolo Zamboni proposed in 2008 called chronic cerebrospinal venous insufficiency, or CCSVI.

Its been thought that multiple sclerosis is caused by a misguided immune system that attacks the nerves of the brain and spinal cord and can lead to muscle weakness, paralysis and death. However, Zamboni suggests that the disease instead is the result of blocked blood veins — leading to inflammation, which, in turn, causes the immune system to attack nerves in the brain and spinal cord.

Zamboni proposed that treating it may be as simple as opening them up. Stecker was hopeful. Read more>>

'Master Switch' Found For Inflammatory Diseases, January 2011:

Scientists have discovered a protein that acts like a “master switch” determining whether white blood cells will boost or dampen inflammation, a discovery that could help researchers find new drugs, or possibly even a cure, for rheumatoid arthritis.

Many patients with rheumatoid arthritis are treated with a class of medications called tumor necrosis factor (TNF) inhibitors made by a number of drug companies including Abbott Laboratories, Merck, Pfizer and Amgen.

But as many as 30 percent of those patients do not respond well to anti-TNF drugs, so experts say it is imperative to develop more widely effective treatment options for the debilitating condition.

In the study, published in the journal Nature Immunology on Sunday, scientists from Imperial College London found that the protein IRF5 acts as a molecular switch that controls whether white blood cells -- known as macrophages -- will promote or inhibit inflammation.

The scientists said the results suggest that blocking the production of IRF5 in macrophages could prove to be a valuable way of treating a wide range of autoimmune diseases, such as rheumatoid arthritis, inflammatory bowel disease, lupus and multiple sclerosis.

They also suggest that boosting IRF5 levels could help treat people whose immune systems are compromised or damaged. Read more>>

Powerful New Painkiller With No Apparent Side Effects or Addictive Qualities, May Be Ready in a Year

ScienceDaily (Jan. 30, 2011):

— A powerful new painkiller, which was developed on the basis of the research conducted at Stony Brook University and with no apparent side effects or addictive qualities, may now be only a year or two from the consumer market.

"This offers a major paradigm shift in the control of pain," declares Dr. Simon Halegoua, Professor of Neurobiology & Behavior at Stony Brook who in the 1990s, teamed up with fellow Stony Brook professors Dr. Gail Mandel and Dr. Paul Brehm to identify a novel sodium ion channel involved in the transmission of pain. They predicted that a drug aimed at blocking this channel, PN1/Nav 1.7, would control pain. PN1 (Peripheral Neuron 1), is uniquely expressed in peripheral nerves such as those involved in pain transduction.

"When a patient is given an opiate like morphine, pain signals are still transmitted from sensory nerves to the central nervous system. Morphine action throughout the brain reduces and alters pain perception, but it also impairs judgement and results in drug dependence," explains Halegoua, also director of the Center for Nervous System Disorders at Stony Brook University.

"With drugs targeting the PN1/Nav1.7 sodium ion channel, the pain signals would not be transmitted, even by the sensory nerves. And since the central nervous system is taken out of the equation, there would be no side effects and no addictive qualities." Read more>>

Cells' energy factories linked to damaging inflammation

Trish Reynolds,, Monday January 31, 2011:

Scientists have discovered that molecules called reactive oxygen species (ROS) produced by the energy factories, or mitochondria, in cells, may play a role in a rare inherited disorder in which uncontrolled inflammation damages the body’s tissues.

Their research in human and mouse cells suggests that blocking these molecules could reduce inflammation in TNF receptor-associated periodic syndrome (TRAPS) and possibly other inflammatory diseases.

The work, published online in the Journal of Experimental Medicine, was supported by the National Institute of Arthritis and Musculoskeletal and Skin Diseases, a component of the National Institutes of Health.

TRAPS is one of a recently identified family of conditions referred to as autoinflammatory disorders, which are marked by unexplained inflammation. As discovered by Dr. Daniel Kastner’s research group in 1999, TRAPS is caused by mutations in the gene coding for TNF receptor 1 (TNFR1), which binds tumor necrosis factor (TNF). TNF is a key inflammatory molecule in the body’s response to infection, as well as in a number of common rheumatic diseases, including rheumatoid arthritis and ankylosing spondylitis. In people with TRAPS, TNF-mediated inflammation causes recurrent fevers, abdominal pain and skin rash. If not controlled, inflammation can lead to amyloidosis, a buildup of inflammatory proteins that can result in organ damage.

While blocking TNF with agents called TNF-inhibitors relieves symptoms for some patients, others continue to have symptoms, says Richard Siegel, M.D., Ph.D., NIAMS autoimmunity branch chief and acting clinical director. Some go on to develop amyloidosis despite treatment.

The inadequacy of anti-TNF treatment in these patients led Dr. Siegel and his colleagues to look at ROS. ROS are chemically reactive molecules containing oxygen that have been implicated in a variety of conditions, including cancer and atherosclerosis. Read more>>

Vested interests by CBT doctors causes SEVERE harm for ME patients

As Professor Malcolm Hooper explains:

Patients with M.E. are not the only patient group to be negatively affected however. Other patient groups misdiagnosed as CFS are also denied appropriate diagnosis and treatment.

They may also be subjected to inappropriate psychological interventions. Doctors, researchers and the general public are also negatively affected in various ways by this subterfuge (As explained previously in Smoke and Mirrors).

The only groups which gain from the ‘CFS’ confusion are insurance companies and various other organisations and corporations which have a vested financial interest in how these patients are treated, including the government.

As Professor Malcolm Hooper explains:

CBT and GET have had disastrous effects on many M.E. sufferers

As Professor Malcolm Hooper explains:

The creation of the flawed disease category of ‘CFS’ (and the equally flawed government policies that have gone along with it) have had a devastating effect on hundreds of thousands of M.E. sufferers around the world, including young children.

These very ill patients are often denied appropriate medical treatment and care, denied appropriate insurance entitlements and other medical benefits and are often accused of malingering by doctors, welfare agencies and the media (and in turn even their own friends and family).

M.E. patients are also routinely recommended or forced to participate in inappropriate or harmful psychologically based interventions while basic appropriate medical care is withheld.

These harmful interventions (and the lack of basic medical care) have had disastrous and long-term physical effects on many sufferers. In some cases this has resulted in death. (Hooper et al. 2001, [Online]) (Hyde 2003, [Online])
As Professor Malcolm Hooper explains:

A study we need more of like we need a hole in the head


This is the study we need more of these like a hole in the head

A Critique of
“A pilot study of cognitive behavioral stress management effects on stress, quality of life, and symptoms in persons with chronic fatigue syndrome”


” One might question the possibility of circular logic – defining an illness by its symptoms then assessing psychometric properties of a scale that measures the same symptoms.”

Yes indeed one must also question the competence of anyone using such a questionaire to diagnose a neuroimmune illness.

Sleep and fatigue in mice infected with murine gammaherpesvirus 68

Olivadoti MD, Weinberg JB, Toth LA, Opp MR.:

Neuroscience Graduate Program, University of Michigan.
Fatigue, a common symptom of many acute and chronic medical conditions, reduces both quality of life and workplace productivity and can be disabling. However, the pathophysiologic mechanisms that underlie fatigue can be difficult to study in human populations due to the patient heterogeneity, the variety of underlying causes and potential triggering events, and inability to collect samples that may be essential to elucidation of mechanisms (e.g., brain).

Although the etiology of chronic fatigue syndrome (CFS) remains elusive, some studies have implicated viral infections, including Epstein-Barr virus (EBV), a human gammaherpesvirus, as a potential factor in the pathogenesis of CFS.

Murine gammaherpesvirus 68 (γHV68) is a mouse pathogen that shares many similarities with human γHVs, including EBV.

In this study, we use γHV68-infected C57BL/6J mice as a model system for studying the impact of chronic viral infection on sleep-wake behavior, activity patterns, and body temperature profiles. Our data show that γHV68 alters sleep, activity, and temperature in a manner suggestive of fatigue. In mice infected with the highest dose used in this study (40,000 plaque forming units), food intake, body weight, wheel running, body temperature, and sleep were normal until approximately 7 days after infection. These parameters were significantly altered during days 7 through 11, returned to baseline levels at day 12 after infection, and remained within the normal range for the remainder of the 30-day period after inoculation. At that time, both infected and uninfected mice were injected with lipopolysaccahride (LPS), and their responses monitored. Uninfected mice given LPS developed a modest and transient febrile response during the initial light phase (hours 12 through 24) after injection. In contrast, infected mice developed changes in core body temperatures that persisted for at least 5 days.

Infected mice showed an initial hypothermia that lasted for approximately 12 h, followed by a modest fever that persisted for several hours. For the remainder of the 5-day recording period, they showed mild hypothermia during the dark phase.

Running wheel activity of infected mice was reduced for at least 5 days after injection of LPS, but for only 12 h in uninfected mice. Collectively, these observations indicate that1) physiologic and behavioral processes in mice are altered and recover during an early phase of infection, and 2) mice with latentγ V68 infectionhave an exacerbated response to challenge with LPS.

These findings indicate that laboratory mice with γHV68infections may provide a useful model for the study of fatigue and other physiologic and behavioral perturbations that may occur during acute and chronic infection with gammaherpesviruses.

CJD diagnosis just got easier

Tiffany O'Callaghan,

Invasive biopsy is currently the only sure way to diagnose the degenerative neurological condition Creutzfeldt–Jakob Disease (CJD). But a highly sensitive assay could change that, providing a fast, accurate alternative for early diagnosis of this rare but deadly condition.

In its most common form, known as sporadic CJD, the disease affects roughly one in a million people. Beginning in the 1990s, several cases of a variation of CJD known as vCJD were reported among people who had consumed beef from cows infected with another disease, bovine spongiform encephalopathy (BSE).

The findings, published online in Nature Medicine1, also suggest that the assay — developed by microbiologist Ryuichiro Atarashi of Nagasaki University, Japan, and his team — could pave the way for the screening of broad sectors of the population. Read more>>

Invest in ME Statement regarding MRC Funding of more silly Research into so called ME/CFS

Invest in ME,

The MRC has recently announced its intention to allocate £1.5 million for ME research [1].

"As part of its continuing commitment to the area, the MRC will be making available up to £1.5M for new research into the mechanisms of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)."

Whilst any money which would be ring-fenced for ME research is to be welcome it is not yet at all clear what type of research is going to be accepted. For years patients and their carers have been calling for biomedical research into causation to be funded for ME. So far all the funding has gone into the behavioural model of ME which the vested interests of the psychiatric lobby have orchestrated.

The MRC have been criticised in the past for not funding biomedical research into ME – and for squandering over £5 million on the ludicrous PACE trials.

This criticism has been justified. The recent response to Professor Malcolm Hooper [2] is evidence that this criticism has not been addressed properly.

The actual announcement made by the MRC describes their new priorities for research as being -

Autonomic dysfunction (malfunction of the nervous system)
Cognitive symptoms
Immune dysregulation (e.g. through viral infection)
Sleep disorder

Most of these priorities seem to be symptoms and we wonder if this isn’t being set up specifically to allow the psychiatrist lobby to continue to control the research agenda.

Nothing in the MRC announcement seems to highlight or describe an overarching strategy of research for ME.

The crucial statement seems to be this -

"The aim is to promote new and innovative partnerships between researchers already working in the CFS/ME field and those in associated areas, such as pain and fatigue.

The aim is also to encourage and support more high-quality CFS/ME research proposals”.

This would seem to be an alarming statement if the intention is to limit the funding only to those who are already working with Chronic Fatigue (essentially to those whom the MRC has previously funded or who have been selected to be included in this expert panel).

Rather than specifying “pain and fatigue” we would have preferred the statement to highlight virology and immunology.

Rather than ... Read more>>

Patients probed by medical students without consent

Sunday, January 30, 2011, by Mike Adams, Editor of

(NaturalNews) Warning: Explicit language. We apologize for the extremely explicit nature of this story, but we feel that publishing this truth, no matter how repulsive, is in the public interest and serves the greater purpose of informing patients about what can happen to them while under sedation at hospitals. Do NOT read this article if you are easily offended, grossed out or otherwise disturbed by explicit language in a medical context. The information contained in this report is NOT appropriate for children. It is, however, true. This is not a hoax.

Now for the story:

If you're undergoing surgery at the hospital, you might want to have a secret nanny cam nearby to record what goes on, because it turns out that unconscious patients are being physically violated by medical students as part of their "medical training."

In a shocking report first published by Madison (, anesthetized patients in Australia were, without their knowledge or consent, repeatedly subjected to genital, anal and breast examinations by medical students.

In one case, a man who was under anesthesia for spinal surgery was subjected to "a queue of medical students" performing practice rectal examinations. Read more>>

M.E. Moray Support Group

M.E. Moray Support Group:

Welcome to ME Moray Support Group's Facebook page.

1.5 million Americans filed for bankruptcy in 2010

By Jerry White, 6 January 2011:

The number of people in the US filing for bankruptcy rose by 9 percent last year to 1.53 million, as more working families fell victim to job losses, plunging home values and unforgiving creditors.

The figure was the highest since 2005 when changes in the bankruptcy laws making it more difficult and costly to file led to a sharp decline in the number of Americans seeking court protection. The recent spike in cases—despite the added costs and legal hurdles—is indicative of just how desperate large segments of the American population are despite the official claims of an economic recovery.

Over the last three years—as the economic recession and 2008 crash took hold—4 million consumers filed for bankruptcy, with last year’s numbers matching the record levels reached before 2005. While most filers earn less than $30,000 and lack a college degree, a growing percentage of families with incomes above $60,000 and college degrees are being forced into bankruptcy.

As tens of millions are finding it impossible to pay their bills, the corporations and banks are raking in record profits, top executives are pocketing huge payouts and the richest 2 percent of the population is celebrating the tax cut handed to them by Obama and the congressional Republicans. Read more>>

NAT - nucleic acid amplification testing

by XMRV Global Action on Saturday, January 29, 2011:

Nucleic Acid Testing (NAT) – Direct detection of viral
genetic material (RNA or DNA) in plasma, cells or blood
using amplification methods
Polymerase chain reaction (PCR)
Transcription-mediated amplification (TMA)

The NIH Fact Sheet on Transfusion Safety shows that NAT is the test that they use to screen basically all blood in the US for HIV, HCV, and WNV.

THe Blood Working Group refers to NAT throughout reporting its Phase II results, and recommendations for Phase III and IV.

The Blood Systems Research Group also propose using NAT.

I am not one of the science minds in our group, but I wonder if the fact that NAT is used so predominantly in blood screening in the US, including for HIV, another retrovirus, is the reason that we keep seeing PCR usage proposed in studies even though it has proven to not be the best method for finding XMRV. Public health concerns might also be the reason that most studies are looking in the blood for XMRV rather than other locations that have shown more promise.

I have selected most of the sections of the 3 documents that refer to NAT below.

NIH Fact Sheet on Transfusion Safety
A new technology, nucleic acid amplification testing (NAT), greatly improved detection of HIV in donated blood. Previous HIV screening tests relied on detecting circulating antibodies.
Read more>>

Queensland flood fundraising efforts

Here at GT, our thoughts go out to everyone affected by the flooding in Queensland.:

Here are the fundraising efforts we've rounded up so far.

Chefs, restaurateurs and other hospitality professionals around the country are organising fund-raising events over the coming weeks, and we'll be listing the details of as many of them as we can on this page.

If you'd like to donate directly to the Premier's Disaster Relief Appeal in the meantime, visit the official Queensland flood fundraising website or call 1800 219 028 between 6am and 11pm.

Email us at or send a message to us via our Twitter account to give us details of your event.

- Church Street Enoteca is putting together Victorian Restaurants Unite For Qld Flood Relief.

- Sydney's Café Ish is donating $10 from each $45 per head meal on the evening of Saturday, February 5.
Read more>>

Is CFS spread just like the flu, through coughing and sneezing ?

By Donald C. Drake, Knight-Ridder Newspapers:

More than 50 epidemics of CFS have been reported during the last 40 years here and abroad, and clinicians say they frequently find the disease clustering in families.

Bell, who gave up his private pediatric practice to pursue this disease with his own money (he works in emergency rooms at night to make ends meet), said he thought CFS was spread just like the flu - through coughing, sneezing and close contact.

Bell said he does not think there is any practical way of protecting against infection. He said he believes CFS victims are contagious during the early stages of their infection, when it seems that they have nothing more serious than the flu.

By the time CFS is suspected, he said, the contagion risk is gone. Read more>>

Detroit cuts funding for homeless warming centers

By Naomi Spencer, 29 January 2011:

Budget cuts carried out on the quiet have prevented emergency warming centers in Detroit from opening their doors all winter, leaving thousands of homeless and poor residents in the bitter cold. Homeless advocates were given little notice that the city had eliminated all funding to operate the single remaining warming center, Operation Get Down, on Detroit’s east side.

A decade ago, Detroit operated three warming centers, funded with $500,000. This already slim budget has been chopped away over the past few years, forcing closure and consolidation of services.

At the same time, homelessness has swelled and thousands of other Detroit residents suffer without gas and electricity in the winter months. Last year, the city provided only $182,000 to Operation Get Down. In June 2010, the homeless aid was among $115 million cut from the city budget.

The center provided a last resort for homeless people to find respite from the cold, especially those with drug addictions, mental illness, or criminal backgrounds, who may not meet requirements imposed by some homeless shelters or religious charity operations. Read more>>

Virus Found That May Be Linked To a Debilitating Fatigue Ailment swept under the CARPET

By LAWRENCE K. ALTMAN,, Published: September 05, 1990 !!!

But, in contrast to AIDS, there is no evidence that chronic fatigue syndrome is spread by sex or is fatal, the authors of the study said in reporting their preliminary findings at a scientific meeting in Kyoto, Japan. Their research is to be published soon in The Proceedings of the National Academy of Sciences.


Dr. DeFreitas said in an interview that her team was seeking to isolate the virus, which was detected indirectly by blood tests and sophisticated laboratory methods in most of a small group of patients suspected of having chronic fatigue syndrome. One group of patients included children in an unidentified town in upstate New York where an epidemic occurred.

Professor Klimas: CBT can help some people with chronic diseases, BUT it does not cure ME/CFS

By Professor Klimas:

I had said that I had pressed Dr Antoni to get this study published in large part to rebut Dr White’s claim to cure 25% of ME/CFS patients with CBT.

Dr Antoni’s study shows that while CBT helps people with the illness as it does in every chronic disease model ever tested, it does not cure the illness. Read more>>

Prof. Klimas: CBT does not cure (25% of) ME/CFS as claimed by Prof. White

By Professor Klimas:

Now you have a publication, written by a psychologist and well regarded CBT expert to use when you want to argue that CBT helps people with this illness (as it does in every chronic disease model ever tested) but does not cure the illness.

I had said that I had pressed Dr Antoni to get this study published in large part to rebut Dr White’s claim to cure 25% of ME/CFS patients with CBT. Dr Antoni’s study shows that while CBT helps people with the illness as it does in every chronic disease model ever tested, it does not cure the illness. Read more>>

Now we know why Professor Klimas did CBT research, thank you Professor !!

Dr Klimas has responded to comments left on the ME Association's post of this paper

Professor Klimas:

Dr White challenged me in a meeting a year ago saying nothing else had been published to deny this finding. SO now you have a publication, written by a psychologist and well regarded CBT expert to use when you want to argue that CBT helps people with this illness (as it does in every chronic disease model ever tested) but does not cure the illness.

It is easy to pick apart any study after the fact, but put this in the context of the time (2001 when it was written) and place (the US where we were absolutely obliged to use the CDC case definition if we hoped for funding at the time.)

I am very proud to work with a multidisciplinary team that includes experts in autonomic function, immunology, cell biology, psychoneuroimmunology, genomics, systems biology, nutrition, measurement illness state… the list goes on.

Its a very exciting time and the team is very much jazzed and wants to see the work we do in all of these areas lead to both a clear understanding of the illness at the cellular level and then to effective treatments.

You are going to see many papers this year from the different members of the team and taken separately you may fail to see the big picture. Don’t get sucked into too narrow a view. Wait and see… some amazing science is underway.

I had said that I had pressed Dr Antoni to get this study published in large part to rebut Dr White’s claim to cure 25% of ME/CFS patients with CBT.

Dr Antoni’s study shows that while CBT helps people with the illness as it does in every chronic disease model ever tested, it does not cure the illness.

kind of key first line – right?

See also: Prof. Klimas: CBT does not cure (25% of) ME/CFS as claimed by Prof. White

Can't make it to Valencia today?

No problem, Just visit at 12:30 CET for live coverage of the R31 launch.

Sunday, January 30, 2011

GOBSART's CBT for ME/CFS explained

By Kassy Fatooh:

Those of us too unwell to actually participate in CBT or in studies on CBT are automatically eliminated from the sample group.

Those who show improvement probably do so because for once some damn attention is being paid to them, even if it is silly attention that discounts the physical deterioration taking place even as they cognate and behave.

Children with ME/CFS

by Mike Turris on Saturday, January 29, 2011:

Since I posted an article written by Jolene Cargill about “Parents of sick children living in fear” on January 23rd, I’ve received many mails concerning this issue. I would like to summarize all the information and questions I’ve received.


a) Parents who have been diagnosed with ME/CFS are worried about the possibilities their children can have of inheriting the illness or at least the genetic predisposition to have it in the future.

b) Every time their children get ill, parents go into a “state of panic” until they see that their children recover.

c) When they realize that their child has not recovered completely, they see ME/CFS signs in their child every day.

Be aware that a common complaint of teenagers is “being tired”. If your child is an adolescent, remember that normal hormonal alterations in adolescents might result in “fatigue”. All the body energy goes into growing concerns and in having a lot of fun with their friends. So, if during the day they lie on a sofa watching TV or playing with their Play Station but in the evenings they can go out with their friends and dance till very late, don’t worry. They are absolutely fine.

WHAT MUST BE DONE? Read more>>

See also :A Case Definition for Children with ME/CFS

Chronic fatigue syndrome with special focus on systemic lupus erythematosus

Urbańska-Krawiec D, Hrycek A.:

Slaski Uniwersytet Medyczny w Katowicach, Katedra i Klinika Chorób Wewnetrznych, Autoimmunologicznych i Metabolicznych.

Chronic fatigue is an ailment frequently reported in the course of several pathologies. When fatigue clearly predominates over other symptoms, it is referred to as chronic fatigue syndrome (CFS). Initial CFS definition and diagnostic criteria were published in 1988, and have been several times modified since that time. In 1994, Fukuda et al. presented precise guidelines for the evaluation and study of CFS.

The etiopathogenic mechanisms of CFS have not yet been satisfactorily clarified although immune and hormonal responses as well as a decline in neurotransmitter concentrations have been implicated in the development of the disorder.

Systemic lupus erythematosus (SLE) is an autoimmune disease, with chronic fatigue as a very common symptom observed in as many as 80% of the patients. Owing to its obscure pathogenesis, therapy for CFS remains a difficult and complex issue consisting mostly of the treatment of the underlying disease.

Appropriate lifestyle and physical activity should be emphasized.

Medications include antidepressants and glucocorticosteroids.

Psychological counseling has also been recommended. Complex etiopathogenesis and the involvement of the immune and neurohormonal systems suggest that CFS might be a primary and not secondary disorder. Hence a significant role of medical professionals in the diagnosis and treatment of chronic fatigue syndrome.

I am becoming anti-social

Posted January 29, 2011 by splottdadrants:

This one could be a long rant, but please stay with it because it is, I believe, important. Never, in my memory (which stretches almost back to the Atlee government that started much of what is now under attack) has “Welfare” been so vulnerable.

Those who have braved this blog before will remember that I am “disabled” – I am severely hearing impaired, effectively deaf – albeit I can still hear sounds and use guess-work and a hearing aid in my one ear with a fraction of its original capacity to muddle along. I am, however, extremely fortunate in that I am employed, full-time, in a reasonably well paid job. I am not dependent upon the state for my ability to survive. Actually, judging by the amount of taxation – I think it might even be the other way around.

I want to say two things this time: how my disability has hidden effects upon my life; and how the word “disability” is bandied around by politicians – across the political spectrum – who simply do not know what they are talking about.

Simplistic generalisations are used, as if every disabled person fits a “norm“. That’s like saying all MP’s are dishonest, because a few have been caught fiddling expenses.

First up, me: as I have said, I am severely hearing impaired. This has obvious effect, in that I hear little and what I do hear is often distorted or muffled, so I have to either ask for repetition (not always easy in busy shops or bars) or “guess” and hope I don’t misinterpret (it can be embarrassing!).

I have, on occasion, said “Yes” – or smiled – thinking one thing was said, when they asked something very different. Fortunately, I am large enough to get away with it most times, others may not be as fortunate.

There is though another “consequence” of my condition. One that close family and friends have started to observe.

I am becoming isolated; I am becoming “anti-social“. I don’t mean in the context that I charge around drunk being abusive – I mean that I don’t socialise anymore. I opt out; I make excuses; I stay home. Worst of all – I tell lies.

Not huge , damaging ones – little white ones instead. I make up another life, to excuse my non-participation in work or other social events. In short, I am becoming a semi-recluse. Read more>>

Policy Change Now campaign

by Action Now on Wednesday, January 19, 2011:

You don't need to have participated in previous campaigns or be a UK resident to take part. This campaign runs for a fortnight 20th January - 3rd February.

Only a few days left to participate. It's so easy, all the work's been done for you by Action Now. All you need to do is copy, paste and send. Please make the effort.

See Phase III of the Policy Change Now campaign for details

A legend and a remarkable human being

By Csaba Daradics:

Seventeen years after the great Ayrton Senna died, the documentary about his life, aptly named 'Senna', was shown at the 2011 Sundance Film Festival last week and was met with critical acclaim.

The work of British director Asif Kapadia and screenwriter and executive producer Manish Pandey, Senna tells the story of one of the greatest drivers who ever lived exclusively through archive footage.

That means that all the great racing sequences are there, showing incredible overtaking maneuvers, spectacular crashes and some of the greatest rivalries that Formula 1 has ever seen.

According to the LA Times, the documentary not only shows Senna’s incredibly competitive personality, but also his spiritual side.

“Though he drove like the devil, he was a spiritual person who believed deeply and profoundly in a higher power. A philosophical mystic with a jewel thief's nerves and a poet's sensitivity (and good looks), Senna was an altogether remarkable human being”, the review states.

The Brazilian pilot entered the world of racing driving karts and at the height of his career he won 33 races and three Formula 1 World Championships. Senna died aged 34 in a crash at the 1994 San Marino Grand Prix.

Professor, Did you know that ...

By Angela Sinclaire:

Did you know you can't hum when u r holding your nose!

ME versus depression

Christine Standing MA said:

It is symptomatic that ME people still have a sense of humour; depressed ones do not.

Once the CBT is out the bottle, you discover what kind of crap CBT is

Christine Standing MA said:

Research abstract: pilot study of cognitive behaviour stress management in Chronic Fatigue Syndrome

From the Journal of Psychosomatic Research, published online on 18 January 2011.

"It seems to me that this study omits the ‘so what?’ question.

Hans Selye first described ‘stress’ as a concept. We are all ‘stressed’ – as he said, ‘the only person who is not stressed is a dead person’. However, sometimes ‘stressors’ (that which causes the stress) exceed our ability to cope. Answer? Remove the stressor.

In this study, people with a ‘bona fide diagnosis of CFS’ were chosen. To remove their stressors, which are physical according to the WHO CDI, you have to remove the cause. The cause is physical; the effect is neurological.

So this study finds that it can help people to cope. So what! That hardly even touches the surface for many people. Put the research money where it matters – in the physical realm – and stop confusing psychosomatic symptoms with neurological ones.

Hans Selye added one further thought that this study failed to address. An organism – be it animal or human – if the stressor continues for too long, will give up. It dies.

That is what we find happening to patients when they are made to exercise.

Remember Sophia Mirza who died because psychiatrists thought her illness was psychosomatic, and stop putting finances into meaningless studies. "

Christine Standing MA


Why is an illness like ME a matter of state security ?

Source: Make some Noise for M.E!:

Meanwhile, in the UK, there is a “secret" file (FD 23/4553/1) on ME/Post Viral Fatigue, containing 40 pages inherited by the Medical Research Council, at the National Archives, Kew.

This file covers a period from 1988 – 1997 and carries an original status of “Closed for 73 years”. It cannot be accessed under the Freedom of Information Act until 1st January 2071; many years after most, if not all, of those currently afflicted will be dead!

Why? This type of ruling is usually of thirty years duration and covers documents concerning the formulation of government policy, documents related to defence, to national security, to the economy, and documents that are considered very confidential.

How can an illness be a matter of state security? Even the Official Secrets Act has been invoked! Read more>>

"Useless" Vitamin C saves Dying Man

by Dr Jeffrey Dach MD:

Allan Smith, a New Zealand Dairy farmer, contracted Swine Flu while away on vacation in Fiji. When he returned home, the flu quickly evolved into severe pneumonia which left him in a coma on Life Support in the Intensive Care Unit. Chest Xrays showed the lungs were completely filled with fluid with an "opaque" appearance called "white out".

After three weeks of this, Allan's doctors asked the family permission to turn off the machines and let him die.

Allan's wife Sonia had a brother with some medical knowledge, so he stepped in and said, "you haven't tried everything, You have got to try high dose IV vitamin C on Allan". At first, the doctors resisted, saying it was useless. Next, the three sons weighed in with a persuasive argument to try the IV vitamin C, saying there was nothing to lose.

The Doctors were in unanimous agreement that IV Vitamin C would be useless and a waste of time, and that the patient will certainly die.

However, one doctor "felt slightly uneasy" with the decision to turn off life support, without first acceding to the family's wishes, and so they reluctantly agreed to give the IV Vitamin C. Their plan was to give the IV Vitamin C, show it was useless, and then turn off life support. Read more>>

CBT and other quacks ...

"This little bottle will cure your pain and fatigue, help you lose weight and win the lottery!"
Copyright Fibromyalgia Network, by Steve Thorson

Dr Goldacre, did you know that Dr Crippen is innocent ?

By SARA NELSON, 17th January 2011:

Modern CSI methods have been used to prove Dr Hawley Crippen – who gained a reputation as one of the most notorious murderers in British history - did not kill his wife.

The breakthrough comes more than 100 years after he was hanged for allegedly poisoning Cora.

Now scientists say DNA tests show the remains found at the couple’s home were not hers. Read more>>

Rise in tongue cancers tied to oral sex

By Amanda Garnder,, Jan 29, 2011:

There's a worrisome uptick in the incidence of certain head and neck cancers among middle-aged and even younger Americans, and some experts link the trend to a rise in the popularity of oral sex over the past few decades.

That's because the human papillomavirus (HPV) is a major trigger for these cancers, and HPV can be transmitted through this type of sexual activity.

"It seems like a pretty good link that more sexual activity, particularly oral sex, is associated with increased HPV infection," said Dr. Greg Hartig, professor of otolaryngology head and neck surgery at the University of Wisconsin School of Medicine and Public Health in Madison.

According to Dr. William Lydiatt, professor and chief of head and neck surgical oncology at the University of Nebraska Medical Center in Omaha, the overall incidence of head and neck cancers is going down, largely because fewer people are smoking (tobacco and drinking are the major traditional risk factors).

But the incidence of cancers of the tonsil and base of the tongue have been going up over the past decades, he said. And those are the ones that are more likely to test positive for HPV. Read more>>

Primate Gammaretroviruses Require an Ancillary Factor Not Required for Murine Gammaretroviruses to Infect BHK Cells

Xu W, Eiden MV.:

BHK cells remain resistant to XMRV or GALV infection even when their respective receptors, Xpr1 or PiT1, are expressed. We set to determine the stage at which viral infection is blocked and whether this block is mediated by a dominant negative factor or the absence of a requisite ancillary factor. BHK cells bind neither XMRV nor GALV envelope proteins. BHK cells expressing the appropriate receptors bind XMRV or GALV envelope proteins. BHK cells can be infected by NZB-XMV enveloped vectors, an envelope derived from a xenotropic retrovirus that, like XMRV, employs Xpr1 as a receptor, and also by vectors bearing the envelope of 10A1 MLV, a murine retrovirus that can use PiT1 as a receptor. The retroviral vectors used in these analyses differ solely in their viral envelope proteins suggesting that the block to XMRV and GALV infection is mediated at the level of envelope-receptor interactions. N-linked glycosylation of the receptors was not found to mediate resistance of receptor-expressing BHK to GALV or XMRV, as shown by tunicamycin treatment and mutation of specific glycosylation site of the PiT1 receptor. Hybrid cells produced by fusing BHKXpr1 or BHKPiT1 to XMRV or GALV resistant cells respectively can mediate efficient XMRV or GALV infection.

These findings indicate that BHK cells lack a factor that is required for infection by primate xenotropic viruses. This factor is not required for viruses that use the same receptors but were directly isolated from mice.

A Case Definition for Children with ME/CFS

By Leonard A. Jason1, Nicole Porter1, Elizabeth Shelleby1, David S. Bell2, Charles W. Lapp3, Kathy Rowe4 and Kenny De Meirleir5:

Abstract: The case defi nition for chronic fatigue syndrome was developed for adults (Fukuda et al. 1994), and this case
defi nition may not be appropriate for use with children and adolescents. The lack of application of a consistent pediatric
defi nition for this illness and the lack of a reliable instrument to assess it might lead to studies which lack sensitivity
and specifi city. In this article, a case defi nition is presented that has been endorsed by the International Association of
According to the new Pediatric case defi nition, the
following six classic categories include fatigue,
post-exertional malaise; unrefreshing sleep, or
disturbance of sleep quantity or rhythm; myofascial
pain, joint pain, abdominal and/or head pain; two
or more neurocognitive manifestations, and at least
one symptom from two of three subcategories
including autonomic manifestations, neuroendocrine
manifestations or immune manifestations. Read more>>

Living With M.E.

01/05/2010 by Paul S Allen:

ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) is a complex illness affecting multiple systems of the body and, in particular, the nervous and immune systems.

This is a condition that my wife has for many years now. We live with it every day having to manage time, energy and at times the sheer frustration that comes from not being able to enjoy the things that others take for granted.

The following is an interview with her so that people will get an understanding of what she (and us together) deal with daily.

When did you get sick?

April 1998

What was life like before you got sick?

I was a very busy person, ... Read more>>

Saturday, January 29, 2011

Androgen stimulates transcription and replication of XMRV

Dong B, Silverman RH.:

Department of Cancer Biology, Lerner Research Institute, Cleveland Clinic, 9500 Euclid Avenue, Cleveland, Ohio 44195, USA.

Xenotropic murine leukemia virus-related virus (XMRV) is a gammaretrovirus originally identified in a subset of prostate cancer patients. Because androgens stimulate prostate tumors and some retroviruses, we investigated the effects of dihydrotestosterone (DHT) on XMRV transcription and replication. Transcription from the XMRV U3 region was stimulated up to 2-fold by DHT, but only in cells containing a functional androgen receptor. Mutations in the glucocorticoid response element (GRE) of XMRV impaired basal transcription and androgen responsiveness. Furthermore, DHT stimulated XMRV replication 3-fold, whereas androgen inhibitors (casodex and flutamide) suppressed viral growth up to 3-fold.

Findings suggest that integration of the XMRV long terminal repeat (LTR) into host DNA could impart androgen stimulation on cellular genes.

Thx to Matthew Smith for the link:
Read the full article>>

Inflammation, EBV infection and other conditions leading to NF-κB activation may promote XMRV spread

J Virol. 2011 Jan 26. [Epub ahead of print]

Sakakibara S, Sakakibara K, Tosato G.:
Laboratory of Cellular Oncology, and Laboratory of Cancer Biology and Genetics, Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, MD 20892, USA.

Xenotropic murine leukemia virus-related virus (XMRV) is a gammaretrovirus linked to prostate carcinoma and chronic fatigue syndrome.

Here we report that NF-κB activation can markedly increase XMRV production.

The inflammatory cytokine TNFα, which activates NF-κB, significantly augmented viral Gag protein production in XMRV-infected cells.

Reporter assays showed that TNFα and Epstein-Barr virus LMP1 (latent membrane protein 1), an intrinsic NF-κB activator, increased LTR-dependent XMRV transcription. We identify two NF-κB binding sites (designated κB-1 and κB-2) in the long terminal repeat (LTR) U3 region of XMRV, and demonstrate that both sites bind to the NF-κB component p65/RelA. Mutation of the κB-1 site, but not the κB-2 site, impaired responsiveness to TNFα and LMP1 in reporter assays. A mutant XMRV at the κB-1 site replicated significantly less efficiently than the wild-type XMRV in the prostate carcinoma LNCaP, DU145 and PC3 cell lines, HEK293 cells, the EBV-immortalized cell line IB4 and the Burkitt's lymphoma cell line BJAB.

These results demonstrate that TNFα and EBV LMP1 enhance XMRV replication in prostate carcinoma and B-lineage cells through the κB-1 site in the XMRV LTR, suggesting that inflammation, EBV infection and other conditions leading to NF-κB activation may promote XMRV spread in man.

New i product from Apple ...

Drjohngreensmith Mefreeforallorg:

Apple have just released a new i product:
It is a musical toilet - called the ipood

The psychiatric network of vested interest


"Professor Simon Wessely plays an important part in a network of psychiatric
medical professionals whose views and research are almost
completely coincidental with those of the government policies of
Britain and North America. He has access to funding, media and support,
which enables him to shape and promote the prevailing view
about a number of issues which are of importance to those States.

Professor Wessely is the leading chronic fatigue syndrome
research academic in Britain, heading the CFS Research Unit at
King’s College Hospital, now part of Guy’s, King’s and St. Thomas’
School of Medicine (GKT). There he also heads the Gulf War
Research Unit and pursues the role of civilian advisor in psychiatry to
the British Army. Since the end of the 1980s, Professor Wessely has
steered a fine line, carefully avoiding categorising ME and CFS
patients as mentally ill, whilst nevertheless working hard to classify
their illness, against the prevailing trend, as a psychiatric condition.

Wessely has established an unrivalled position as a well-placed
government advisor and peer reviewer in almost all the seminal journals.
He has been involved with every serious inquiry into ME and
CFS over the past decades, and his papers and those of his colleagues,
produced in considerable number, dominate the field in any literature
Read more at:

Is this why ME/CFS has been covered up for so long ?

HIV costs, UK:

The number of people living with HIV (PLHIV) continues to increase in the UK. A new study estimated the annual population cost of providing HIV services in the UK between 1997–2006 and projected them to 2007–2013.

The average annual treatment costs were £32,322 in 2006 for those on quadruple-or-more ART. The number of PLHIV using NHS services tripled over 10 years to 52,083 in 2006 and is projected to increase to 78,370 by 2013.Costs including community care increased to an estimated £683 million in 2006 and are projected to exceed £1billion in 2013.

Population costs are expected to continue to increase due to PLHIV's longer survival on ART and the relative lack of success of HIV prevention programs.

My NOTE: Just think CBT, money, secundairy gains, power, and suddenly a XMRV cover up looms BIG, wouldn't you say Mr Deer ?

Preparations begin for Super Bowl at Cowboys Stadium

Models walk the runway during the Etam SpringSummer 2011 Collection Launch at the Grand Palais on January 24, 2011 in Paris, France

Ground crews prepare Cowboys Stadium for Super Bowl XLV in Arlington, Texas. The Green Bay Packers will face the Pittsburgh Steelers on Feb. 6.

Demeaning trivialisation by the psych lobby

January 29, 2011 by cfssufferer:

The demeaning illness name that literally applies to 7 billion people worldwide in ‘fatigue’ is perhaps the most malicious misnomer in the English language. Such a large portion of the trivialisation of this illness (and perhaps lack of medical inroads into this illness) is a consequence of the literally interpreted nomenclature: ‘chronic fatigue syndrome.’ The condescending and antiquated jibes stemming from the psych lobby are another gloomy face of this illness.

Much like the ‘God of the gaps’ theory, I call the psych lobby’s assertions ‘the gaps of the illnesses.’ When one ‘psychosomatic’ illness is proven beyond doubt to be purely biological- there domain narrows… I wait for the day that ME/CFS is removed from their realm. Read more>>

The twisted irony of this illness

January 29, 2011 by cfssufferer:

The twisted irony of this illness involves the very instrument needed to research this disease being affected- the brain. This circular quandary is one of the most frustrating elements of this disease and leaves one often feeling helpless.

One could cope with a predominantly physically crippling disease or even a solely neurological disease.

One could rely on the unaffected bodily function- i.e. mind or body. ME/CFS patients are not so lucky.

I would love to passionately pursue some athletic or intellectual endeavour however the nature of this illness prohibits precisely both of these avenues. Read more>>

Got Lyme disease? Try Healkick

Five years ago, Joey Tuan graduated from UC Berkeley and was working at a job in the San Francisco Bay Area.

Shortly after returning from a hiking trip to Yosemite, he came down with a serious case of mono…and never felt well again.

Within a year, he was diagnosed with chronic fatigue syndrome, and about a year and a half later tested CDC-positive for Lyme disease.

He’s been through a wide variety of treatments, and still struggles with his health daily.

But this blog isn’t really about that.

Joey, now 27, is embarking on a new project. He’s starting an on-line support group for young adults (in their 20s and 30s) who are dealing with neuroimmune conditions such as chronic fatigue syndrome (ME/CFS), chronic Lyme disease, fibromyalgia, atypical MS, multiple chemical sensitivities, and mold illness.

“During the five years I’ve been sick, I’ve always wanted to connect with other people my age who were dealing with similar issues,” he says. “There hasn’t been a good way to do that."

So he has created "Healkick," an on-line support group. If you want to join, ... Read more>>

Hello Politicians, start listening to the people


The smootching continues, with David (Call-me-Dave) Cameron, the Prime Minister, inviting hand-picked groups of my colleagues to Downing Street to be impressed by the surroundings and baubles. I'm sure that selected high ups from the medical establishment were there. The press release talks in breathless prose about 4000 GPs being represented.

It seems to be about trying to win the argument for change being essential, and the proposed change being the best way forward.

The problem is that virtually nobody is in the least bit convinced. Certainly not the workers, as responses from the BMA, the RCN and the Unions demonstrate.

I would like to point out ... Read more>>

Patients with life threatening neuro-immune disease are left to rot

Creek said...:

When I read the news I posted the Facebook status: "Health is for the Wealthy." Through no fault of the WPI, because of the flaws of the system and the lack of outcry among the general public, we rot.

But patients with life-threatening neuro-immune disease associated with a retrovirus and requiring expensive and, at first, experimental care, don't always have to rot forever.

Remember those red AIDS ribbons and the motto, Silence = Death? Don't you wish you had been on the front line? 

Well, now is your time. Read more>>

The burden of funding research should NOT lie with the patients

Creek said...:

Dr. Jamie Deckoff-Jones, Director of Clinical Services for the Whittemore Peterson Institute, started her job with the unpleasant task of notifying patients via her blog that the clinic to open in May at WPI will not be able to accept any insurance, including Medicaid and Medicare.

It's time, and way past time, for healthy folks to join with patients to act up.

One anonymous person commented on Dr. Deckoff-Jones' blog post, "The idea that ME is being approched by nickle and dimeing poverty stricken sick patients is immmoral and criminal." Even that commentor understood that the WPI is doing all it can, but their frustration is justified: the burden of funding research can't lie with the patients. Read more>>

Professor, Jerry wants her miniskirts back, 27 January 2011:

Texan former supermodel, Jerry Hall, might be 54 years old, but she left the Chanel haute couture spring/summer 2011 show feeling inspired to copy the collection:

"I can take my minis back from my daughters now and wear them with trousers!" she told us after the show.

'Synthetic marijuana' wasn't meant to be smoked by public, inventor says

The Calgary Herald, JANUARY 28, 2011:

CALGARY - The high from synthetic marijuana products comes from a laboratory — not a plant.

And the chemist who created some of the compounds most commonly used to make synthetic marijuana is widely quoted warning people against using it for that purpose.

"It's like playing Russian roulette. You don't know what it's going to do to you," John W. Huffman said in a recent interview with the website LiveScience.

In what's considered the first case of its kind in Calgary, police Tuesday seized synthetic marijuana on sale at several local stores and store in a warehouse.

Like marijuana, many of the chemicals in the synthetic drug are banned under the Controlled Drug and Substances Act.

Unlike marijuana, which derives its potency from a naturally-occurring substance in cannabis plants, the synthetic drug is a chemical-herbal mix of otherwise legal plant materials, infused with manufactured chemical compounds that ... Read more>>

National Association of Injured & Disabled Workers


Overview: NAIDW was founded in 2009, to help injured & disabled accident victims navigate the difficult workers' compensation system, insurance industry, social security disability and VA benefits!

Most importantly to provide grant-based funding for those injured & disabled workers and family members experiencing financial hardships!Products:Providing Free Resources, Support, Guidance and Most Importantly Grant-Based Financial Aid to Injured and Disabled Workers & Their Families, As A Result of Injury, Illness, Pain, or Disability!

NAIDW's Facebook Page

Is it time to get rid of the Centers for Denial of CFS (CDC) ?

By Sarah Mcg:

It is time to get rid of the CDC and transfer their job to NIH. The CDC has wasted hundred of millions over the years.

So if the Republicans want to save money - shut down the CDC, sell off their expensive new buildings, and give the work to those at NIH. Billions saved and American lives saved as well.

Friday, January 28, 2011

You can not mentally train yourself out of a retrovirus

By Heidi Dunlap Bauer:

You can not mentally train yourself out of a retrovirus. Minorly reduce a few symptoms with relaxation techniques, perhaps. Breathing through the pain as a woman in labor has to do. Perhaps.

But, I am fed up to the rafters with coping techniques.

I want total relief from symptoms. I want a cure. I want to know the real cycle of disease and its progression that is happening in my body for over 16 years. .

Remembering the Challenger Crew

By: Buzz Aldrin:

As we reflect on the tragic loss of Challenger and her brave crew of heroes aboard that fateful day, Jan. 28, 1986, I am reminded that they truly represented the best of us. As they climbed aloft on a plume of propellant gasses, reaching for the stars, they inspired us who were earthbound.

They represented the inspiration that is uniquely space and planned to share their experiences with the classrooms of future explorers who might one day follow their path — and, perhaps, reach higher still — because of this great mission. A mission so tragically ended was, in a moment, etched forever in our hearts and memories.

As we grieved at this great loss, President Ronald Reagan recited lines from another American hero — John Gillespie Magee Jr.’s memorable poem, “High Flight” — and reminded a grieving nation that “they slipped the surly bounds of Earth” to “touch the face of God.” The words inspired us, describing for us in poetry the great sacrifice and noble cause of the Challenger crew.

I am also reminded of three friends and heroes who we lost in the Apollo 1 fire — particularly my friend, Ed White, fellow West Pointer, track team and squadron-mate.

Just 2 1/2 years after that tragic day, we boldly made our way to the moon, a journey we would complete in their honor with my colleagues, Neil Armstrong and Mike Collins, aboard Apollo 11. Read more>>

We are going to change the incredible ignorance surrounding this disease

By Dr Deckoff-Jones:

My vision is to create what I needed fifteen years ago when I first became ill, and again seven years ago when it happened to Ali and my husband. We were never even diagnosed properly due to the incredible ignorance surrounding this disease.

We are going to change all that. Read more>>

WPI is recruiting proper DOCTORS and nurses

By Dr Deckoff-Jones:

I am currently recruiting in earnest. Physicians, nurses, PAs, practice manager.

We are planning to open in May, but that is of course completely dependent upon finding the right doctors. A few good men or women.

If you are out there reading this, please get in touch. Read more>>

WPI will start to treat CFS patients probably as soon as this May

By Dr Deckoff-Jones:

I've accepted the position of Director of Clinical Services for the WPI, or the Center for Neuro-Immune Disease as the clinic will be called. I am currently recruiting in earnest. Physicians, nurses, PAs, practice manager.

We are planning to open in May, but that is of course completely dependent upon finding the right doctors. Read more>>

Karl died of Lyme disease because no doctor in Australia believed in neuroborreliosis

KARL’s Story by Mualla Akinci McManus:

Karl McManus was bitten by a tick in July 2007 on Sydney’s Northern Beaches.

A week later he developed flu-like symptoms but, due to a lack of knowledge about Lyme disease in Australia, the tell-tale signs and potential seriousness of the tick bite were overlooked.

Five weeks later Karl experienced more of the classic symptoms of Lyme disease and also began to lose dexterity in the fingers of his left hand and to get muscle wasting.

In November 2007 Karl was misdiagnosed with multi-focal motor neuropathy (MFMN) and given an immuno-suppressive agent which worsened his condition, so the treatment was stopped.

It was not until April 2008, when we sent his blood to a US laboratory and his tests came back positive for Lyme-disease bacteria, that our suspicions were confirmed.

However, Karl could not find a doctor in Australia who would care for and treat his neuroborreliosis.

Without proper monitoring he continued to deteriorate.

Karl passed away suddenly on 14 July 2010.

His decline and death was due to a refusal by the medical system to accept he had Lyme disease and treat him accordingly.

He did not want anybody to suffer like him ever again. Read more at

Karl McManus Foundation on facebook

Kennebunk town manager and his wife educate public on Lyme disease

By Laura Dolce,

KENNEBUNK — The number of Lyme disease cases in Maine tells a story of its own: the reported cases in York County jumped 62 percent between 2007 and 2008, with the increase statewide climbing an astounding 645 percent between 2000 and 2007.

Those numbers prompted state Rep. Ed Legg, D-Kennebunk to sponsor LD 1709, a bill created to foster better awareness of the disease that has already garnered bipartisan support.

But the numbers only tell part of the Lyme disease story. It's the people affected by the disease who bring those numbers to life, one story at a time.

Joanne Tibbetts is one of those people. The Scarborough mother of three daughters and wife to Kennebunk Town Manager Barry Tibbetts first got bitten by a tick 15 years ago when looking at houses in Alfred.

"I had no bulls-eye rash," she said. "I looked on the CDC site and I was told I had nothing to worry about."

As time went by, though, Tibbetts started to experience what she described as migrating arthritis and ... Read more>>

See also: Chronic Lyme Disease patients: 100% are XMRV positive

Why is Dr Nancy Klimas doing NIH funded CBT research ?

Suzy Chapman said... :

Why is US CFS physician and advocate, Dr Nancy Klimas, involving herself in NIH funded CBT research?

My comment: Don't know, maybe money or maybe because she is not on WPI's group of outstanding researchers and clinicians to study and TREAT patients ?

If U know the answer, please let ME know.

I am utterly pissed off about Illness Politics, I simply want to be cured

Posted by Barry Fotheringham:

My last update delved into politics. It was a move away from my usual blogging topics.

This update is asking for less politics. Especially in relation to the millions of us who are ill and caught up in political storms.

I am utterly pissed off with the politics and sniping that accompanies my illness. Yesterday, ... Read more>>

New VW manages 239 miles per gallon

Niall Firth, technology editor,, 27 January 2011

In a world of soaring fuel prices it's certainly a smart move.

While Volkswagen's new XL1 "Super Efficient Vehicle" might look like a "futuristic" concept car designed sometime in the late 1980s, its figures are undoubtedly impressive.

Unveiled at the Qatar motor show on Tuesday night, the XL1 claims an incredible fuel consumption of just 0.9 litres per 100 kilometres (equivalent to 239 miles per gallon). VW also says it emits just 24 grams of carbon dioxide per kilometre. Read more>>

Only some men should use AIDS drug for prevention

By Maggie Fox, Health and Science Editor
WASHINGTON | Thu Jan 27, 2011:

(Reuters) - Only high-risk gay and bisexual men should use Gilead's HIV drug Truvada to protect themselves from the AIDS virus, federal officials said on Thursday in the first official guidance on using the drug.

A study published last November showed that the pill, which combines two AIDS drugs, reduced the HIV infection rate by nearly 44 percent in high-risk gay and bisexual men. [ID:nN2287379]. It worked even better if the men used the drug consistently.

Some doctors have already been using the experimental approach, called pre-exposure prophylaxis, or PrEP for short. This use of the drug is not approved by the U.S. Food and Drug Administration, which has approved Truvada for treating HIV infection.

But the U.S. Centers for Disease Control and Prevention decided to issue some guidance for doctors who may want to prescribe the drug to protect people at very high risk of infection with the fatal and incurable virus. Read more>>

Removing an entire country from the internet is easy

Jacob Aron, technology reporter,, 28 January 2011:

John Gilmore, internet activist and co-founder of the Electronic Frontier Foundation, famously said "The net interprets censorship as damage and routes around it." But what happens when all online routes are cut off?

At around 10.30 pm GMT last night, the Egyptian government shut down the entire country's connection to the internet, leaving its citizens unable to access websites hosted in the rest of the world. Attempts to access Egyptian sites from outside also fail - for example, is currently unresponsive - while Egyptian access to .eg domains is likely to be extremely unreliable.

Protesters against the government had been coordinating their actions on social networking sites, leading the government to block the likes of Twitter and Facebook, but many got around these restrictions by using smartphones or proxy servers. Now, access through any means is almost impossible - Egypt is effectively offline.

"The Egyptian government's actions tonight have essentially wiped their country from the global map," said James Cowie of Renesys, a internet access monitoring company, in a blog post last night. "What happens when you disconnect a modern economy and 80,000,000 people from the internet?"

Only one Egyptian ISP remains connected to the outside world. It's unclear why the Noor Group remains online, but Cowie points out that the Egyptian Stock Exchange is still accessible at a Noor address.

It appears that removing an entire country from the internet is surprisingly easy, by making changes in a system known as the border gateway protocol (BGP). Read more>>

Eating nuts, seeds and fish helps against mild cognitive impairment

Editor's Choice, Medical News Today, 27 Jan 2011:

Mayo Clinic researchers found that the prevalence of mild cognitive impairment decreased with an increase in the consumption of monounsaturated and polyunsaturated fatty acids.

Monounsaturated fatty acids are commonly found in olive oil and canola oils, and polyunsaturated fatty acids, such as Omega 3 or Omega 6 fatty acids, are commonly found in most varieties of nuts, seeds and fish.


Mild cognitive impairment is an intermediate state between normal cognitive aging and dementia.

Individuals with mild cognitive impairment can function reasonably well in everyday activities, but may have difficulty remembering details of recent conversations, events and upcoming appointments, or in planning and making decisions.

Most (but not all) patients with mild cognitive impairment develop a progressive decline in their thinking abilities over time. Alzheimer's disease is usually the underlying cause, but some patients may progress to other types of dementias. Read more>>

Another study in the make, designed NOT to detect XMRV

by Mike Turris on Thursday, January 27, 2011:

It seems that Dr. John Mellors and Dr. Frank Maldarelli have been recruited against XMRV. Unfortunately this information has been confirmed by @xmrvbug in Twitter. The goal of this study is to make XMRV and CFS go away.

They will not run validated assays and this study can only do harm to the entire patient community as it is purposely designed NOT to detect XMRV... “Discourage anyone from participating in this new false study.”

It is very sad but we must not forget that WPI is moving forward. There are many reputable scientists and physicians who are working hard to learn the truth and WPI will not give up seeking not only the truth behind XMRV/MRV but all aspects of the pathophysiology of ME/CFS.

Don't forget the Third positive XMRV study


74.5% of CFS patients from 3 countries test positive for XMRV in an American CFS clinic.

50% have healthy family members also infected with XMRV. (This figure may rise after further testing).

46% (non CFS) have family members with Cancer.

51% have family members sick with CFS or CFS 'like' illness.

96% of CFS in this study have LV Diastolic Dysfunction (mitochondrial induced).
28% have family members with Autoimmune Disease.
8% of CFS with XMRV have Mold & Lyme infection.

Source: "Detection of XMRV in a National Practice Specializing Exclusively in Chronic Fatigue Syndrome". Paul Cheney (MD., Ph.d.) poster at the 1st XMRV conference at the National Institutes of Health (NIH), 7/8th September 2010, Bethesda, Maryland, USA.

Warning: Food for thought

Warning: Scientists discover mad cow disease-causing prions infect through air

Thursday, January 27, 2011 by: S. L. Baker, features writer:

(NaturalNews) Cancer and Alzheimer's disease are usually described as the two most dreaded health disorders. But there is probably no more ghastly way to suffer and inevitably die than to contract so-called mad cow disease or Creutzfeldt-Jakob disease.

Prions are known to cause mad cow disease, also termed bovine spongiform encephalopathy (BSE), and Creutzfeldt-Jakob in humans. These infectious agents produce a progressive and always lethal break-down of brain cells; they literally turn brains into sponge-like mush.

It is well established that these nightmarish infections can be spread by surgical instruments contaminated by prions and, more rarely, through blood transfusions.

Food made from BSE-infected cows can also induce the disease.

But mainstream medicine has long insisted that prions can't cause disease in the way common flu or cold viruses do -- by traveling through the air and being inhaled into the body. In fact, the scientific community has long declared that airborne prions are no threat to health.

Turns out, they've made a deadly and dangerous mistake.

Swiss scientists at the University of Zurich ... Read more>>

Using sex to sell science

Jan 27 2011, by scicurious:

Sci has been really thrilled to see so much talk over the past few days on women science bloggers, where they are, and why they appear to fly under the radar.

But I’ve noticed that, while female science bloggers and female scientists aren’t big fans of comments on their appearance…most of them have no problem with using some sexy to sell science to the public.

What is the difference, and can the two options of trying to get people to ignore looks in favor of content, and using cool and sexy to sell science actually coexist without one harming the other?

So when my most glorious partner in science blogging-crime Miriam hit me up, we thought it’d be a good idea to get some discussion out there.

Our chat has been edited for grammar, clarity, length, and some side discussion of things like hats. Read more>>

* The entirety of this text has been cross posted at Deep Sea News.

Efficacy of CBSM in persons with a "bona fide diagnosis" of CFS

Corina Lopez, Michael Antoni, Frank Penedo, Donna Weiss, Stacy Cruess, Mary-Catherine Segotas, Lynn Helder, Scott Siegel, Nancy Klimas, Mary Ann Fletcher, published online 18 January 2011:


The present pilot study was designed to test the effects of a 12-week group-based cognitive behavioral stress management (CBSM) intervention on stress, quality of life, and symptoms in chronic fatigue syndrome (CFS).

We hypothesized that participants randomized to CBSM would report improvements in perceived stress, mood, quality of life, and CFS symptomatology from pre- to postintervention compared to those receiving a psychoeducational (PE) seminar control.


We recruited 69 persons with a bona fide diagnosis of CFS and randomized 44 to CBSM and 25 to PE. Participants completed the Perceived Stress Scale (PSS), Profile of Mood States (POMS), Quality of Life Inventory (QOLI), and a Centers for Disease Control (CDC)-based CFS symptom checklist pre- and postintervention.


Repeated measures analysis of variance revealed a significant Group×Time interaction for PSS, POMS–total mood disturbance (TMD), and QOLI scores, such that participants in CBSM evidenced greater improvements than those in PE. Participants in CBSM also reported decreases in severity of CFS symptoms vs. those in PE.


Results suggest that CBSM is beneficial for managing distress, improving quality of life, and alleviating CFS symptom severity.

Insurance companies are watching Facebook and Twitter

Insurers are scouring social media for evidence of fraud

If someone receiving disability benefits for a bad back brags on Facebook or Twitter about finishing a marathon, chances are their insurance company will find out and stop the checks.

By Shan Li, Los Angeles Times, January 25, 2011:

Now there's another reason to be careful about what you post on Facebook: Your insurance company may be watching.

Nathalie Blanchard found out the hard way.

Struggling with depression, the 30-year-old from Quebec, Canada, took a medical leave in early 2008 from her job as an IBM technician. Soon after, she began receiving monthly disability benefits from her insurer, Manulife Financial Corp.

A year later and without warning, the payments stopped.

A representative of the Toronto insurance company told Blanchard that Manulife used photos of her on Facebook — showing her frolicking at a beach and hanging out at a pub — to determine she was depression-free and able to work, said Tom Lavin, Blanchard's attorney.

"They just assumed from the pictures that she was a fraud," Lavin said, "without investigating further before terminating Nathalie's benefits."

Blanchard sued Manulife, accusing Manulife of failing to talk to her doctor and neglecting to inform her before cutting off payments. The case is scheduled for trial ... Read more>>


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