Low dose naltrexone (LDN) for ME

By: Maija Haavisto

I am a sufferer of the neurological illness CFS/ME, which in my case has been progressive since I got sick on the 28th of August 2000. I first heard of LDN in 2004, but it took until early 2007 before I was able to obtain a prescription, thanks to the brilliant professor I have as a doctor.

I have been using LDN since March 2007. I could already notice benefits the very next day after I started taking it. My fatigue and muscle weakness are a lot better, I don't "crash" nearly as easily as I used to and the crashes are significantly milder (I used to get bedbound from very mild effort, like stirring a soup!).

My cognitive problems have improved though not as much as my fatigue. My chronic fever and chronic urticaria, both among my most bothersome symptoms are 90-95% gone.

I believe I would be in wheelchair, probably even nursing home, now if it wasn't for LDN. While I'm far from a cure my quality of life is very much improved.

Please, if you think LDN might help you or someone you know, don't pass up this chance. It could change your/their life like it changed mine.

Scientists Grow Human Livers in Lab

By John Johnson, Newser.com

Scientists have grown human livers with stem cells, the BBC reports. The downside is they're really small, about the size of walnuts, and it will take lots more research and probably at least five years before the development is more than just a joke to forward to heavy-drinking friends. "Not only must we learn how to grow billions of liver cells at one time in order to engineer livers large enough for patients, we must determine whether these organs are safe to use," says the lead Wake Forest researcher.

It's still being hailed as a breakthrough. Scientists took livers from ferrets and stripped away everything but the collagen structure with, as the Telegraph explains, a "mild detergent." Then they introduced the human cells, and the livers soon began growing and functioning like human organs. "Whilst 'off the shelf' new livers are clearly still a long way off, this work gives a glimmer of hope that this is no longer just the stuff of science fiction," says a UK researcher unaffiliated with the work.

Marathons Damage Your Heart

...fortunately, the harm appears to be reversible

By Evann Gastaldo, Newser.com

Running a marathon seems like a healthy thing to do, but it can actually hurt your heart—and not just if you’re out of shape. A Canadian cardiologist and marathon runner studied 20 other runners, some novice and some seasoned, six to eight weeks before their marathon, immediately after the race, and then three months later. He found that many distress signs were present before and immediately after the race, similar to what you might see during a heart attack, Time reports.

Before the race, the runners' hearts were functioning below normal capacity; right after crossing the finish line, the runners showed their highest levels of troponin, an enzyme that rises when blood flow is reduced—factors that damage heart muscle. But three months after the race, the damage appeared to have been reversed, and the heart functioned normally again. Though all runners were affected, fitness does matter: “People who were less ready or less fit pushed the envelope more and induced more reversible injury to the heart,” says the doctor.

The desert terminator

If your last sporting feat was to run 50 marathons in 50 days, how could you take it to the next level? Dean “Ultramarathon Man” Karnazes came up with this: run 1,000km (621 miles) across four inhospitable deserts, through temperatures as high as 40C and as low as -40C, and end up in a blizzard in Antarctica.

It would be the ultimate ultramarathon, and even for Karnazes - an athlete who has been held up as a perfect specimen of physical fitness and examined by doctors in the interests of medical science - it was almost too much. “I’ve never known a challenge like it,” admitted the 46-year-old American as he boarded a boat for home last week in a snowstorm.

Last March, Karnazes was one of a handful of runners hoping to be first to complete the Four Desert Challenge in one year. The Read more>>

Seroconversion by XMRV infection

By: Xiaoxing Qiu, Priscilla Swanson, Ka-Cheung Luk, etc.


Three rhesus macaques were infected with XMRV to determine the dynamics of the antibody responses elicited by infection with XMRV. All macaques developed antibodies to XMRV during the second week of infection.

Conclusions
This study provides the first demonstration of seroconversion patterns elicited by XMRV infection. The nature and kinetics of antibody responses to XMRV in primates were fully characterized.

Moreover, key serologic markers useful for detection of XMRV infection were identified.

Three prototype immunoassays were developed to detect XMRV-specific antibodies. These assays demonstrated good sensitivity and specificity; thus, they will facilitate large scale epidemiologic studies of XMRV infection in humans.

Read more>>

When doctors are idiots

By Jolene Cargill, Scottish Daily Record, Oct 28 2010:

TEENAGER Eilidh Berwick faces a gruelling battle to cope with everyday tasks.

The housebound 15-year-old is totally dependent on her parents to feed, dress and wash her.

But despite a diagnosis of ME - or chronic fatigue syndrome - the teenager found many doctors dismissed her crippling symptoms as being all in her head.

At one point, a specialist even suggested Eilidh be referred to a psychiatric unit.

Her mum Carol, 46, said: "When they talked about her going into hospital we thought they meant a specialist ME ward but it was a psychiatric ward.

"When I took her to the GP he said, 'Right, that's enough of all this' and told Eilidh to go and run round the building three times."

Minutes later dad Blyth, also 46, found Eilidh outside in a distressed state but the GP wouldn't accept that she couldn't carry on.

Carol said: "He told her to run through the waiting room. After that, they said she had chronic fatigue syndrome and would recover in six months."

Four years on, her parents had to fight to stop Eilidh being treated as a psychiatric patient. Now the family, from Glenrothes, Fife, complain doctors seem to have washed their hands of them.

Carol said: "The paediatrician told us the ME has been dealt with and it's all down to anxiety. They always fudge over the physical illness."

But, for Eilidh, the daily struggle with her condition is far from behind her. She has to be bathed in a chair because she gets so dizzy she cannot support herself.

Carol said: "Her dad and I have to hold her up, so she wears a bikini for privacy and we strap her in so she can sit on the toilet. She has no dignity."

The year after Eilidh was diagnosed, a consultant prescribed physiotherapy for her. But, soon after the first course, her health collapsed.

Read more>>

The Ultimate Guide to Sex and Disability

Book Review: The Ultimate Guide to Sex and Disability

Review by Lindsey Middlemiss, butyoudontlooksick.com:

"I’ve been wanting to read this book ever since I first saw it for sale on a website I was already buying from and I couldn’t resist getting it. I found it to be a very interesting read and since it is extremely well written and laid out, it was also an easy read. Potentially tricky subjects are dealt with tact and sensitivity and the book offers very frank and practical advice."

XMRV/MLV seminar with Dr. Judy Mikovits, 28th of November, 2010, Oslo

You are kindly invited to an XMRV/MLV seminar to be held on the 28th of November, 2010 in Oslo, Norway. Come and hear the newest information about this interesting family of viruses.

The speakers will be: ·

Dr Judy Mikovits,Research Director for the Whittemore Peterson Institute (WPI) for Neuro-Immune Disease, Nevada, USA ·

Dr Mette Johnsgaard, Medical Director of Lillestrom Helseklinikk - Center for the Treatment of Chronic Diseases, Lillestrom, Norway.

Read more

Prof. Van Der Meer and XMRV

European Society for ME - research & Knowlege:

The Lillestrom Health Clinic has now tested 80 patients and 50 are positive by either culture or serology test – a total of 62%.

This is very close to the 67% of positive patient results reported by Mikovits, Lombardi, et al., in Science in Oct. 2009.

The Norwegian results are also in line with the findings of Dr. Kenny De Meirleir from Brussels, next Saturday principal speaker during the Congress Food & Psyche.

End of August was known that the research team of De Meirleir, together with RED laboratories has managed to find the retrovirus XMRV in ME/CFS patients from across Europe, including the Netherlands.

Against this background the just published interview in the medical magazine MEDnet (1) with Prof. Dr. Jos van der Meer causes surprise only.

The Professor internal medicine of the UMC St. Radboud stands by his opinion, that XMRV occurs in the United States but not in Europe.

The fact that the American researchers did find XMRV in his Dutch patients, smacks... according to Van der Meer still *.....of contamination of their test with virus material....*


Dr. Speedy said:
If it would be caused by contamination then there shouldn't be a difference between ME patients and healthy controls.

But we all know that the CBT brigade stands to lose millions if the world finds out that ME is not only a serious and very disabling disease but also if the world finds out that ME is caused by a virus for which behavioural therapy is obviously the treatment of choice.

And if this virus has found its way into the blood supply system, because of these Pinocchio doctors, well then they should not only pay back those CBT millions, but they should also pay for all the unnecessary suffering etc.

Not problem patients, but patients with a problem

Brian Barr:

New survey Gives Patients with "Invisible" Illnesses a Chance to Speak Out About How They Are Treated

Patients who suffer from chronic fatigue, fibromyalgia, migraines and other pain disorders can now speak out in an anonymous survey about how the medical community treats them.

Patients with these conditions can experience considerable difficulty finding the help and treatment they need; even finding a diagnosis can be a challenge. Doctors often dismiss their symptoms as being imaginary, which further demoralises an already suffering patient.

Now, as part of the research for a new book on how the medical community treats patients with such illnesses, patients can express their feelings and speak out through an anonymous patient survey. All respondents will receive a downloadable pain trigger journal.

According to Susan Bilheimer, author and survey creator, "It's time that the medical community recognised that patients with illnesses that are chronic and not easily diagnosed are not problem patients, but patients with a problem.

Just because you can't see pain and inflammation doesn't mean they aren't real. There are certainly exceptional doctors who understand chronic illness. But for those who don't, I'm hoping to send a wake-up call that it's no longer acceptable to dismiss and mistreat suffering patients."

The Monster Inside ME

Kristy is trying to get her book published about living with ME.

Would you please join the group and share with your friends?

CBT: Canvas Burning Treatment

XMRV retrovirus found in 62% of ME patients tested in Norway

The European Society for ME:

Dr. Mette Johnsgaard of The Lillestrom Health Clinic tested 24 patients and 3 healthy controls for XMRV using the culture test and found that 14 were positive.

Of the negative tests, 11 were then retested with serology tests and 5 more positive results were found, bringing the total to 19 of 27. One of the positive serology samples was from a healthy control.

The Lillestrom Health Clinic has now tested 80 patients and 50 are positive by either culture or serology test – a total of 62%. This is very close to the 67% of positive patient results reported by Mikovits, Lombardi, et al., in Science in Oct. 2009.

The tests were done in cooperation with VIPdx labs in the USA.

XMRV and contamination

cfspatientadvocate.blogspot.com:

"Over 70 species of mice were tested by Coffin and none of them contained XMRV. This is clearly a new human retrovirus."

The Awful Disease Washington Forgot

By Llewellyn King, White House Chronicle

In the end, as with so much else, the fight against disease leads to Washington. There are big diseases with big lobbies, like AIDS, Alzheimer’s, cancer, diabetes and heart. Their millions of sufferers have associations and lobbies to push for federal research money and to shape its expenditure. Most have their celebrity backers, like Elizabeth Taylor for AIDS, Jerry Lewis for muscular dystrophy, and Mary Tyler Moore for diabetes.

Big lobbies mean big federal dollars, the attention of the National Institutes of Health in Bethesda, Md., and the Centers for Disease Control in Atlanta. If the disease is the kind for which a single or series of silver bullets can produce a cure, Big Pharma comes in with big funding, in the hope that it can develop a lucrative line of medicines, patentable for long-term profits.

Yet there is a vast archipelago of diseases as cruel in their impact, horrible to bear and crying out for research that is not sporadic, underfunded or, through
ignorance, misdirected.

One such is Chronic Fatigue Syndrome (CFS), a name so gentle that it belies the ghastliness of this affliction. Sufferers accuse the U.S. government ... Read more>>

Thx hetalternatief.org

Treating a XMRV positive doctor (with CLL and CFS) with two HIV drugs

CFS Central:

"Dr. Michael Snyderman, an ME/CFS patient with chronic lymphocytic leukemia (CLL), began a trial of two HIV drugs shown to have efficacy in treating XMRV in test tube studies.

Here's the poster presentation that Snyderman, who's an oncologist, is presenting at MD Anderson Cancer Center in Houston, Texas, at 7 p.m. this evening. Snyderman concludes on the poster:

"A patient with CFS and CLL with adverse prognostic factors was shown to have XMRV in plasma and CLL cells. Within the first 100 days of treatment with AZT and raltegravir, he showed multiple benefits simultaneous with disappearance of infectious XMRV.

These findings suggest that XMRV is etiological for both the CLL and CFS and that virus-direct treatment was beneficial in this patient. Further CLL patients should be studied especially as CLL has been statistically associated with an increased risk for other neoplasia. Questions to be answered are what neoplasms are associated with XMRV, will existing antiretrovirals have antineoplasticactivity in these neoplasms and what is the optimal combination of antiretroviral drugs."

Dr. Conant: “Lessons - learned from HIV”.

The Patient Advocate:

"Dr. Conant, who was in the front lines of the AIDS diagnosis and treatment, is no shrinking violet. In the early 1980's he was one of a very few doctors in San Francisco who were willing to deal with doomed patients - often dead in weeks or months. Dr. Conant speaks his mind and he does not flinch."

"Dr. Conant has left his practice in San Francisco and come to New York because of an interest in this new retrovirus named XMRV. This was confirmed in conversation with him. The Patient Advocate surmises that Dr. Conant thinks that XMRV is a potential player in ME/CFS.

Dr. Conant presents lyme and its affiliate, ME/CFS, as an infectious disease. With this in mind the Patient Advocate sees Dr. Conant as “an advocate for ME/CFS research and treatment”. At a minimum Dr. Conant’s expertise can be involved in upcoming treatment trials of antiretroviral drugs in ME/CFS patients."

Chronic Fatigue Syndrome Patients No Longer Fakers?

By SUSAN DONALDSON 16. Oktober 2010

Retrovirus found in CFS patients could lead to therapies

"Chronic Fatigue Outbreak Dismissed by CDC

The CDC dismissed the epidemic at the time, even though the patients were infected with several viruses, and suggested these were psychiatric problems, according to Hillary Johnson, the author of "Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic."

The name was coined in 1987 and "functioned as kind of a social punishment," Johnson said in an op-ed piece for The New York Times. CFS, which now carries the scientific name X-associated neuroimmune disease, is associated with a high suicide rate.

In 1991, Dr. Elaine DeFreitas, a virologist at the Wistar Institute in Philadelphia, found retroviral DNA in 80 percent of 30 her patients with chronic fatigue. Some of them also had rare forms of cancer.

The CDC tried to replicate her efforts, but ended research prematurely and later criticized her work. The CDC acknowledged in 1999 that it had diverted millions of dollars allocated by Congress for CFS to other programs.

But at about the same time in the 1990s, University of Miami researcher Dr. Nancy Klimas pioneered lymph node extraction therapies for what was then called chronic immune activation syndrome.

Now, drug companies are taking an interest in her work treating eight patients with reverse transcriptase inhibitors, antiretroviral drugs similar to those used today in HIV/AIDS patients.

"They went from very ill to much, much improved," said Klimas, who now directs the Gulf War Illness and Chronic Fatigue Syndrome Clinic at the Miami Veterans Affairs Medical Center.

One company that hopes to find new therapies with Klimas is Ohio-based Neo Probe, which explores activated cellular therapy technology to treat cancer, as well as viral and autoimmune diseases.

According to Frederick Cope, vice-president for pharmaceutical research and clinical development, the one "lingering question" is whether ..."

Private Powys GP year ban for 'inappropriate treatment'

bbc news:

A GP has been suspended from practising medicine for a year by the General Medical Council (GMC).

Dr Sarah Myhill, 52, who has a private practice near Knighton, Powys had claimed she was a "pioneer" in the treatment of chronic fatigue syndrome.

The GMC imposed an interim ban while it investigates her claims, but it said Dr Myhill might pose a "risk to ...

A Year Lost and Found

By Susan Hill, The Guardian, Saturday 9 October 2010

My hero Reverend Michael Mayne:

"Michael was vicar of St Mary’s, Cambridge and, later, one of the great deans of Westminster. He made the abbey a place for people and their needs, not just a historical tourist destination.

His understanding of illness came through grievous personal experience. He had ME for several years and it nearly broke him, but out of it came a defining book, A Year Lost and Found, and then his presidency of the ME Association. Michael always practised as well as preached. He worked tirelessly for years for the Medical Foundation for the Victims of Torture, and with Dame Cicely Saunders in the hospice movement. But he always had time for people and their problems and he never spared himself, probably to the detriment of his own health.

Michael died four years ago, bravely, painfully of a facial cancer, enduring surgery and radiotherapy, and he wrote about this too in his inspiring last book, The Enduring Melody."

The Whittemore Peterson Institute would like your help

October 11, 2010: The Whittemore Peterson Institute would like your help in nominating us for the American Express Members Project.

Please take the time to write in by clicking on the "Electronic Nomination Form" link below. While we are encouraging our patients to speak from the heart in the comment section of the electronic nomination form, we know some will want a specific suggestion as to what to say. Please feel free to cut and paste the copy below to help nominate us. If you have any questions please do not hesitate to email us at info@wpinstitute.org.

The Whittemore Peterson Institute is a non-profit institution whose mission is to serve the millions around the world who suffer from chronic inflammatory neuroimmune diseases such as Myalgic Encephalomyelitis/Chronic fatigue syndrome or ME/CFS, fibromyalgia, gulf war syndrome, autism and other similarly presenting illnesses. WPI's current activities include the development of a comprehensive medical research program, educating the public and medical professionals on the most recent advances, while continuing to seek federal medical research funding on behalf of all those who suffer from these debilitating diseases.

As a patient centered organization ...

Walking on the sad side of medicine

October 8, 2010: By Llewellyn King, White House Chronicle:

"I’ve been walking on the sad side. My mailbox is jammed with dozens of heartrending e-mails from sufferers of Chronic Fatigue Syndrome (CFS); a terrible disease that is little understood, little researched and hard to diagnose.

The disease largely disables the immune system; and leads to joint and muscle pain, cognitive dissonance, memory loss, dysphasia and problems with simple math. Sufferers are often confined to bed for months, functioning at a substantially reduced capacity, where the simplest tasks become monumental.

“Washington didn’t so much forget – they were never told. The CDC swept it under the carpet ..."

LP ( Laughing Process ) for ME /CFS by Steve

Australians Ask for Government Funded Biomedical Research into XMRV

October 5, 2010, sleepysunshine:

People with Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, Yuppie Flu, Post Viral Syndrome, Atypical Multiple Sclerosis, Fibromyalgia and Post Poliomyelitis are Uniting for the CAUSE of THEIR LIVES

A small Support Service on the Sunshine Coast called the ‘Find A Cure’ Club proposed the idea of making a Quilt for the Prime Minister and Australians with MEcfs and FM are making it a reality.

Inspired by the AIDS QUILT in the United States, the Australian Quilt will be displayed around each state in Australia before being presented to Our Prime Minister by the Australian MEcfs.Org

XMRV Testing in the UK & Europe

Tests currently offered at RED Laboratories:

• Co-culture
• Serology
• Detection of MLV-related viruses by PCR and sequencing

Co-culture is very sensitive and most importantly, is the only test that can distinguish active infections from latent ones. One limitation is the fact that it is performed from blood cells, it may therefore not be able to detect a virus which is present in another part of the body.

Although it is likely that most virus variants are able to infect this target cell line, this has not yet been demonstrated; therefore there is a possibility that certain viruses (like MLVs) can not be detected by this technique.

Social inclusion of ME sufferers

Michael Briguglio, Times of Malta, 1 October 2010

"According to the World Health Organisation, ME is a neurological condition that leads to certain forms of disability. It has various symptoms such as dizziness, pain, fatigue and cognitive problems.

I happen to know more than one person with ME and I can confirm the hardship it causes.

As a medical expert put it, it is a debilitating neurological condition that leaves patients suffering from multiple disabilities.

ME is now clearly linked with a retrovirus (XMRV) and Malta’s health authorities have already banned blood donations from people with it.

Many people with ME have to stay indoors or in dark places and even in bed for long periods, rendering them incapable of working. Those who suffer from mild ME have big problems in finding employment, especially due to a lack of flexibility and worker-friendly conditions in various places of employment, public and private, irrespective of Malta’s legislation.

It is therefore not surprising that ..."

Why ME/CFS is not a Psychiatric Disorder

By Dr. Eleanor Stein, psychiatrist and psychotherapist, on September 15th, 2010