Cathcart ME Support Group.

Our Group supports the work of ME Research UK, which Is a national charity funding biomedical research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (also known as ME/CFS). 

For information about the Research Projects they are funding and about other research taking place, Please visit their website at:  www.meresearch.org.uk

This Section contains some Information and News about the Latest Developments in Research.

 

The Following article was taken from the MEA website at:

http://www.meassociation.org.uk/?p=5392

MEA Ramsay Research Fund to fund new research into the role of transcription factors in ME/CFS

by tonybritton on March 31, 2011

The ME Association is very pleased to announce that trustees have approved funding for an important new research study that will be investigating the role of what are called transcription factors in ME/CFS.

The research, which has been thoroughly peer reviewed over the past two months, will be carried out by Dr Abhijit Chaudhuri, Professor Peter Behan, Professor John Gow, Professor Chris Hillier, and Simone Hutchinson at Glasgow Caledonian University.

Dr Abhijit Chaudhuri and Professor Peter Behan are neurologists with an impressive clinical and research involvement in relation to ME/CFS.  Professor John Gow has carried out extensive research into the virology of ME/CFS (enteroviral infection in particular) as well as the role of gene expression in ME/CFS: www.meassociation.org.uk/?p=642

Professor Chris Hillier, who is Professor of Physiology at GCU, is a leading expert in disease mechanisms at a cellular and molecular level in cardiovascular, metabolic and genetic disease, and brings fresh thinking in the area of biotechnology to the ME/CFS research agenda.  Simone Hutchinson will be the research assistant on the project.

Transcription factors are complicated proteins that act at a cellular level. They are released in a cascade fashion following harmful stimuli such as infections, trauma, exposure to toxins and drugs and form a key part of the body’s initial defensive response. They also help to regulate gene expression – in simple terms they assist in the process of ‘switching on’ genes and the activities they control.

There is already some preliminary evidence suggesting that transcription factor abnormalities are involved in ME/CFS and that interventions aimed at reducing the levels of transcription factors could be of value in reducing key symptoms such as fatigue.

The role of the transcription factor nuclear factor (NF)-kB has recently been investigated in relation to XMRV infection – where activation leads to an  increase in the production of XMRV.  Journal of Virology abstract:  http://jvi.asm.org/cgi/content/short/85/7/3179.

The research being funded by the MEA Ramsay Research Fund will be looking at transcription factors in blood samples obtained from four separate groups.

First are people with well characterised ME/CFS – Professor Behan will be doing the clinical assessments.

Second is a group of healthy controls.

Third are some of the people who were involved in Professor Gow’s research into gene expression.

Fourth are blood samples that will be obtained from the CFIDS biobank facility in the United States – because the UK biobank has not yet been set up.

The study is expected to take a year to complete.

If a significant abnormality in transcription factors is confirmed in this study this could well lead onto further research which would look at therapeutic interventions aimed at reducing the activity.

Total RRF funding = approximately £42,000

More information on the work of the Ramsay Research Fund can be found on the MEA website: www.meassociation.org.uk/?page_id=1086

Research

ResearchThe Ramsay Research Fund is the research arm of The ME Association – the UK’s longest-established national ME/CFS charity. It is named after Dr Melvin Ramsay, an infectious diseases consultant who documented a major outbreak of the illness at London’s Royal Free Hospital in 1955.

Current research projects include a scheme to set up a central ME tissue bank in a UK hospital. It is important to be able to identify any anomalies in the brain, spine and muscle tissue of people with ME/CFS which can be used as unique markers of ME/CFS. Tissue samples can be made available to any research group wanting to make use of them. Tissue banks already exist for Parkinson’s Disease, Multiple Sclerosis and other neurological conditions, and the Fund wishes to follow these examples.

The RRF is also funding a study at the University of Newcastle into abnormalities in muscle physiology which may indicate where there is skeletal muscle involvement in the exercise-induced fatigue which is a hallmark symptom of ME/CFS. This study will take forward findings from small studies that have already examined this aspect of muscle function.

The RRF has also recently finished funding a key phase of important new research at Glasgow Caledonian University into the genetic profiles of people with ME/CFS, which will hopefully lead to a diagnostic test and effective forms of treatment.

XMRV retrovirus and ME/CFS: Funding from the Ramsay Research Fund could be made available very quickly if we receive a good quality research proposal arising out of the study published by the Whittemore-Peterson Institute on Thursday, 8 October 2009.

Each piece of research adds to the bigger picture about this illness. With your support we can continue to seek scientific evidence that will show that this illness is a real and physical one. This, in turn, will lead us to better treatments for people with ME/CFS.

To download our research leaflets which contain much more information, click on the links below:

Ramsay Research Fund explained (‘pdf’document – filesize 223kb)
MEA Tissue Bank Appeal leaflet (‘pdf’ leaflet – filsize 301kb)
MEA Tissue Bank Project Poster (A4-size poster – ‘pdf’ – file size: 96Kb)

The Tissue Bank leaflet explains progress made so far on the exciting project, and details how you can best arrange your own tissue donation in the interests of research.

Donate to the Ramsay Research Fund

You Can Make A Secure Online Donation To The Ramsay Research Fund On The Mea Website, Click On The Link: http://www.meassociation.org.uk/?page_id=1086

Other Research Information:

 

Here is a copy of an article on the XMRV - or xenotropic murine-leukemia-virus

New York

October 21, 2009

Op-Ed Contributor

A Case of Chronic Denial

By HILLARY JOHNSON

Earlier this month, a study published in the journal Science answered a question that medical scientists had been asking since 2006, when they learned of a novel virus found in prostate tumors called xenotropic murine leukemia virus-related virus, or XMRV: Was it a human infection?

XMRV is a gammaretrovirus, one of a family of viruses long-studied in animals but not known to infect people. In animals, these retroviruses can cause horrendous neurological problems, immune deficiency, lymphoma and leukemia. The new study provided overwhelming evidence that XMRV is a human gammaretrovirus — the third human retrovirus (after H.I.V. and human lymphotropic viruses, which cause leukemia and lymphoma). Infection is permanent and, yes, it can spread from person to person (though it is not yet known how the virus is transmitted).

That would have been news enough, but there was more. XMRV had been discovered in people suffering from chronic fatigue syndrome, a malady whose very existence has been a subject of debate for 25 years. For sufferers of this disease, the news has offered enormous hope. Being seriously ill for years, even decades, is nightmarish enough, but patients are also the targets of ridicule and hostility that stem from the perception that it is all in their heads. In the study, 67 percent of the 101 patients with the disease were found to have XMRV in their cells. If further study finds that XMRV actually causes their condition, it may open the door to useful treatments. At least, it will be time to jettison the stigmatizing name chronic fatigue syndrome.

The illness became famous after an outbreak in 1984 around Lake Tahoe, in Nevada. Several hundred patients developed flu-like symptoms like fever, sore throat and headaches that led to neurological problems, including severe memory loss and inability to understand conversation. Most of them were infected with several viruses at once, including cytomegalovirus, Epstein-Barr and human herpesvirus 6. Their doctors were stumped. The Centers for Disease Control and Prevention, the nation’s presumed bulwark against emerging infectious diseases, dismissed the epidemic and said the Tahoe doctors “had worked themselves into a frenzy.” The sufferers, a C.D.C. investigator told me at the time, were “not normal Americans.”

When, by 1987, the supposed hysteria failed to evaporate and indeed continued erupting in other parts the country, the health agency orchestrated a jocular referendum by mail among a handful of academics to come up with a name for it. The group settled on “chronic fatigue syndrome” — the use of “syndrome” rather than “disease” suggested a psychiatric rather than physical origin and would thus discourage public panic and prevent insurers from having to make “chronic disbursements,” as one of the academics joked.

An 11th-hour plea by a nascent patient organization to call the disease by the scientific name used in Britain, myalgic encephalomyelitis, was rejected by the C.D.C. as “overly complicated and too confusing for many nonmedical persons.”

Had the agency done nothing in response to this epidemic, patients would now be better off. The name functioned as a kind of social punishment. Patients were branded malingerers by families, friends, journalists and insurance companies, and were denied medical care. (It’s no coincidence that suicide is among the three leading causes of death among sufferers.) Soon the malady came to be widely considered a personality disorder or something that sufferers brought upon themselves. A recent study financed by the C.D.C. suggested that childhood trauma or sexual abuse, combined with a genetic inability to handle stress, is a key risk factor for chronic fatigue syndrome.

Many people don’t realize how severe this illness can be. It is marked by memory and cognition problems, and physical collapse after any mental or physical exertion. The various co-infections that occur only make matters worse. Many patients are bedridden. And recovery is rare. A significant number of patients have been ill for more than two decades.

Dr. Nancy Klimas, an immunologist at the University of Miami School of Medicine who treats AIDS and chronic fatigue syndrome, remarked in The Times last week that if given the choice she would prefer to have AIDS: “My H.I.V. patients for the most part are hale and hearty,” she said, noting that billions of dollars have been spent on AIDS research. “Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.”

Congress has appropriated money for research on chronic fatigue syndrome, too, though in far smaller amounts, but the C.D.C. has seemed unwilling to spend it productively. A decade ago, investigations by the inspector general for the Department of Health and Human Services and what was then called the General Accounting Office revealed that for years government scientists had been funneling millions meant for research on this disease into other pet projects.

As public health officials focused on psychiatric explanations, the virus apparently spread widely. In the new study, active XMRV infections were found in 3.7 percent of the healthy controls tested. Roughly the same degree of infection in healthy people has been found in the prostate research. If this is representative of the United States as a whole, then as many as 10 million Americans may carry the retrovirus.

It is estimated that more than a million Americans are seriously ill with the disease. (Not everyone infected with XMRV will necessarily get chronic fatigue syndrome — in the same way that not all of the 1.1 million Americans infected with H.I.V. will get AIDS.)

Hints that a retroviral infection might play a role in chronic fatigue syndrome have been present from the beginning. In 1991, Dr. Elaine DeFreitas, a virologist at the Wistar Institute in Philadelphia, found retroviral DNA in 80 percent of 30 chronic fatigue patients. The C.D.C. went so far as to try to replicate her effort, but refused to follow her exacting methods for finding the virus. In addition, the centers’ blood samples became contaminated, and some people at the agency said that administrators ended the research prematurely. Rather than admit any such failure, the C.D.C. publicly criticized Dr. DeFreitas’s findings.

That episode had a chilling effect on other researchers in the field, and the search for the cause was largely abandoned for 20 years.

Now, Judy Mikovits, the retrovirus expert at the Whittemore Peterson Institute, in Reno, Nev., who led the recent study, has revisited the cold case. Not surprisingly, the institute is private, created by the parents of a woman who suffers from chronic fatigue syndrome. But Dr. Mikovits collaborated with scientists at the National Cancer Institute and the Cleveland Clinic.

When she began her work on this disease in 2006, Dr. Mikovits, a 22-year veteran of the National Cancer Institute, knew little about chronic fatigue syndrome. But she was intrigued that an unusually high number of patients being followed by a Nevada doctor were suffering rare lymphomas and leukemias; at least one had died. And she was also impressed that the doctor, Dan Peterson, had built an extraordinary repository of more than 8,000 chronic fatigue syndrome tissue samples going back as far as 1984.

“My hypothesis was, ‘This is a retrovirus,’ and I was going to use that repository to find it,” Dr. Mikovits told me.

What she found was live, or replicating, XMRV in both frozen and fresh blood and plasma, as well as saliva. She has found the virus in samples going back to 1984 and in nearly all the patients who developed cancer. She expects the positivity rate will be close to 100 percent in the disease.

“It’s amazing to me that anyone could look at these patients and not see that this is an infectious disease that has ruined lives,” Dr. Mikovits said. She has also given the disease a properly scientific new name: X-associated neuroimmune disease.

For patients who have been abandoned to quackish theories and harsh ideologies about their illness for 25 years, the dismantling of “chronic fatigue syndrome” can’t come soon enough.

Hillary Johnson is the author of “Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic.”

Scientists in London have reported Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome.

In October 2009 it was reported that 68 of 101 patients with chronic fatigue syndrome (CFS) in the US were infected with a novel gamma retrovirus, xenotropic murine leukaemia virus-related virus (XMRV), a virus previously linked to prostate cancer. This finding, if confirmed, would have a profound effect on the understanding and treatment of an incapacitating disease affecting millions worldwide. We have investigated CFS sufferers in the UK to determine if they are carriers of XMRV.

Patients in our CFS cohort had undergone medical screening to exclude detectable organic illness and met the CDC criteria for CFS. DNA extracted from blood samples of 186 CFS patients were screened for XMRV provirus and for the closely related murine leukaemia virus by nested PCR using specific oligonucleotide primers. To control for the integrity of the DNA, the cellular beta-globin gene was amplified. Negative controls (water) and a positive control (XMRV infectious molecular clone DNA) were included. While the beta-globin gene was amplified in all 186 samples, neither XMRV nor MLV sequences were detected.

XMRV or MLV sequences were not amplified from DNA originating from CFS patients in the UK. Although we found no evidence that XMRV is associated with CFS in the UK, this may be a result of population differences between North America and Europe regarding the general prevalence of XMRV infection, and might also explain the fact that two US groups found XMRV in prostate cancer tissue, while two European studies did not.

Citation Details: Erlwein O, Kaye S, McClure MO, Weber J, Wills G, et al. (2010) Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome. PLoS ONE 5(1): e8519. doi:10.1371/journal.pone.0008519

see http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0008519