Tuesday, November 30, 2010
I'm a clinical psychologist who's been disabled for 17 years with this disease. Your story is essentially the once a decade regurgitation of "is it or isn't it real" As a clinician I quite well know when I'm sick and this disease is harrowing.
The questions you should be asking are:
1. Why is it called Chronic Fatigue Syndrome when the symptoms are in no way comparable to 'chronic fatigue'? If I had the latter I'd take more naps.
2. Why has the NIH never funded a single substantive study into CFS in 27 years? I've been told by several HIV researchers in the past that the word is out that even applying for a grant into CFS research is a "career killer".
3. Media stories are rare and when they occur it's almost never noted that there are about 4-5 clinical case definitions of CFS and the different definitions are reflected in the study outcomes.
In the UK, They use the "Oxford criteria" which is so vague that anyone with any kind of longstanding fatigue, including people with clinical depression can get a CFS dix. Our CDC's #### criteria is a little more specific but in the past 3-4 years the CDC as created its own new "Empirical Criteria" which is as vague as the Oxford's and which the CDC created without consulting any outside experts into CFS.
4. why has no one looked into the NIH's CFS research grant approval panel. Until last month, it had NO experts into CFS and included many dentists. I'm am not joking. Imagine a panel of dentists ruling on cancer or M.S. grant proposals.
The panel membership has been largely replaced in the past month with many CFS experts, but the chair of the panel is still a dentist!!
As a clinical psychologist I am never surprised at how little psychiatry and abnormal psychology most doctors have a command of. And when faced with a disease that doesn't show up on their tests, the default is always to depression or anxiety.
But there are 1000s of studies showing immune, CNS, and endocrine abnormalities in CFS patients.
Clinical Psychologist M.S. Allen, phd
(comments from michaelallen999 1:14 AM)
"They're focusing on the wrong problem by saying it's all in your head," said Adams, a part-time teacher who lives in Lake City, Fla. "Believe me, if it was all in my head, I'd be so happy. Send me to a shrink and give me some medicine."
In the study, published in the August issue of journal of Psychotherapy and Psychosomatics, study authors examined more than 500 patients from Georgia. More than 100 participants had been diagnosed with CFS, 264 participants had unexplained fatigue without CFS and another 124 healthy participants made up the control group.
Study authors said that 29 percent of participants with CFS had at least one personality disorder, compared with 28 percent of the non-CFS patients and 7 percent of the control group.
"A lot of people cried foul when this study came out, and since then, there has been rigorous debate," said Dr. Nancy Klimas, a professor of medicine, psychology, microbiology and immunology at the University of Miami Miller School of Medicine. "My reaction from my own clinical experience is: no, I don't believe that. My patients tend not to have those [personality] issues."
Klimas explained that extensive scientific research shows that CFS is similar to an autoimmune disorder.
Dr. Anthony Komaroff, the Simcox-Clifford-Higby professor of medicine at Harvard Medical School and editor-in-chief of Harvard Health Publications, said CFS first gain substantial attention in the mid-1980s. Komaroff said many doctors thought CFS to be a psychiatric condition.
"It was a reasonable possibility, but over the course of 25 years, there are literally thousands of peer-reviewed papers showing things you can measure in patients that are different from healthy people," said Komaroff. "There is abundant evidence showing that there are objective things to measure that people aren't just imagining being there. There is an underlying biological process."
"I feel bad about this study because these poor patients get nothing but attitude, they're patronized and have a poor standard of care," said Klimas. "It's just not right. They're terribly ill and they deserve better than that. "
Monday, November 29, 2010
8 were from the 12 reported as negative by PCR/culture using the LNCaP permissive cell line in the 47 consecutive Cheney Clinic case study done in late 2009. Of the eight" ... Read more>>
Sebastian Vettel described his celebratory Formula 1 demonstration run in Berlin on Saturday as a 'very special' experience.
The world champion's trip to the German capital was the latest adventure in his title celebrations, and saw him demonstrate a Red Bull F1 car on the city's June 17th Street and then show the car off in front of the famous Brandenburg Gate.
A huge crowd turned out to welcome Germany's new F1 hero, to Vettel's delight.
"It was a dream come true for me today and ... Read more>>
Can you have hot sex forever? No problem—just stick to a careful diet, regular Pilates and the miracles of modern medicine.
At least that's the message we're getting from the recent burst of celebrity cougar mania and new advertising campaigns from pharmaceutical companies promising that hormones will restore our aging bodies to their former glory.
But is it reasonable for women over 50 to expect the same level of sexual satisfaction and drive as a 25-year-old? And is this what women really want?
On one level, just asking these questions represents progress. In Victorian times, for example, doctors routinely warned midlife women to abstain because intercourse past menopause could be fatal.
The exact mechanism for this predicted demise wasn't always clear, but physicians of that era did believe it was dangerous for older women to even think about sexual activity because erotic thoughts might, among other evils, evoke regrets for lost allure and those regrets could trigger disease.
Medical literature and popular culture of the time (mostly written by men, of course) often portrayed women over 50 as borderline insane.
Sunday, November 28, 2010
Monday 29th November
10.00am Registration and coffee
10.30am The prevalence of CBT disorder (Camelford Bullshit Telling disorder) in psychiatrists
Professor Simon Wessely Professor of Psychological Medicine
11.15am Coffee Biscuits and Tea
11.45am Why believes and vested interests are more important than knowledge
(Professor White will only give outcome results if the PACE trial was NOD a foregone conclusion)
Professor Peter White Professor of Psychological Medicine
12.30pm Why lightning only strikes children who Phil their own Parker
Dr Esther Crawley Consultant Senior Lecturer
2.15pm Why CBT works for washing your car
Professor Trudie Chalder Professor of CBT
3.00pm Doctor/patient relationship in Doctors with unexplained lack of knowledge
Dr Sarah Peters Senior Lecturer in Psychology
3.45 - 3.45 pm Questions and close
Barts "CFS Clinic" 25th Birthday Protest
For years, chronic-fatigue syndrome has been dismissed by the medical establishment. Now researchers may be closing in on a culprit.
It’s hard, even years later, to read Laura Hillenbrand’s wrenching description of her pain. Hillenbrand, 43, is the author of Seabiscuit and the new and widely acclaimed book Unbroken, an account of the World War II bombardier Louis Zamperini. But she is also the most articulate spokesperson for chronic-fatigue syndrome, the mysterious disorder that has plagued her since college.
Many patients, including Hillenbrand, have been referred to psychiatrists. For years the disorder was not a priority at the highest levels; in 1999 a government audit found that the CDC had diverted millions of chronic-fatigue research dollars to other programs.
“Patients are clearly ill and suffering, and we need to address treatment as rapidly as we can,” says Dr. Ian Lipkin, director of Columbia’s Center for Infection and Immunity.
One day, everybody hopes, the layers of wrapping will come off. The cause—or, very possibly, causes—of chronic-fatigue syndrome will become clear. Treatments will become available. And Laura Hillenbrand and millions of others can start reclaiming their vitality and their lives.
December 14-15, 2010: Blood Products Advisory Committee Meeting Announcement
On December 14, 2010, in the morning, the committee will discuss the risk of dengue virus infection in blood donors.
In the afternoon, the committee will discuss murine leukemia virus-related human retroviruses and blood safety.
Public Participation Information
Interested persons may present data, information, or views, orally or in writing, on issues pending before the committee.
Written submissions may be made to the contact person on or before December 7, 2010
Oral presentations from the public will be scheduled between approximately 10:15 a.m. and 11 a.m. and between 3:45 p.m. and 4:15 p.m. on December 14, 2010, and between approximately 11:30 a.m. and 12 noon on December 15, 2010.
Those individuals interested in making formal oral presentations should notify the contact person and submit a brief statement of the general nature of the evidence or arguments they wish to present, the names and addresses of proposed participants, and an indication of the approximate time requested to make their presentation on or before November 29, 2010.
Time allotted for each presentation may be limited. If the number of registrants requesting to speak is greater than can be reasonably accommodated during the scheduled open public hearing session, FDA may conduct a lottery to determine the speakers for the scheduled open public hearing session.
The contact person will notify interested persons regarding their request to speak by November 30, 2010.
Question: How Many CDC Officials Does it Take to Answer a Simple Question?
Answer: More than 10
The question that I posed to the CDC was:
“Do these treatment and management options for CFS (http://cdc.gov/cfs/general/treatment/options.html) apply to ‘Canadian Consensus Criteria’ CFS patients or only ‘CDC criteria’ CFS patients?
I have perpetually posed this innocuous question to the CDC since July. After sending over 40 emails containing this question to more than 10 different CDC personnel over the period of 125 days, I have today finally received an ‘answer’ to my question...
Many ME/CFS patients believe that the treatment they’ve received at Barts is more appropriate for medieval times than today.
Rosie O’Grady (not her real name) is one of them. The 43-year-old disabled lawyer hails from Ireland but lives in England with a severe case of ME/CFS. Before she became ill in 1996, she reminisces, “I rowed on the weekends on the Thames with a rowing club in Greenwich. I loved traveling and my friends. My life was very full.”
All that changed 14 years ago when she became ill with a flu from which she has yet to recover.
O’Grady says the doctors and rehab team at Barts wanted her to become as physically active as possible. “I was told by ...
Saturday, November 27, 2010
Nissan has taken an early lead on pure electric cars with the Nissan LEAF. But to meet tougher fuel efficiency and emissions standards, the company will need to broadly apply a range of technologies across its product line. That was the subtext of Nissan’s choice to use its next-generation conventional hybrid technology for the Nissan Ellure concept unveiled at the 2010 Los Angeles Auto Show, running through Nov. 28.
The stated purpose of the Ellure concept design is mostly about the visual design direction of Nissan’s future sedans—including the Versa, Sentra, and Altima.
The company describes the aesthetics as “an emotive, almost hidden ambience” that would be ideal for “women in their '30s and '40s with a sense of sophistication and rebellion."
In 1995 Unum’s Atlanta Southern Region Benefits (SRB) put together what it called a “collaborative strategy” to “manage CFS files more aggressively” and in a “proactive rather than a reactive fashion.” The so-called strategy was called the Chronic Fatigue Syndrome Management Program (CFSMP) and involved members of Unum’s management such as Dr. Carolyn Jackson, Sally Fowler, Dr. Don Abbott and potentially Susan Steele and Anne Dinsmore.
The 1995 document specifies that in part the role and responsibility of those involved will be to “engage in open and objective discussion on interpretation of results from IMEs and FCEs.” Unum’s objective regarding the CFS project states the following,
”The CFSMP is based on the premise that CFS impacts more than just UNUM employers, attending physicians, and claimant are at risk. Many attending physicians are having a difficult time managing through the subjective nature of CFS.
Group policy holders (employers) are paying higher premiums and losing valued employees. Many highly educated and trained professions are losing motivation and slipping into self-imposed oblivion because of CFS.”
Diagnosis – “Neurosis with a new banner.”
Claimant Profile – “Professional working women ages 30-50; Susceptible to doctor’s power of suggestion;
Unum claimants and insureds with CFS should not ...
Friday, November 26, 2010
You see, in the same article, it also states that "her family want her to be treated at a specialist NHS centre in Essex".
And that "Her husband and daughter have appealed three times but their applications have been rejected by NHS Dorset".
The specialist centre is based on the CBT principle that this severely disabling neurological condition is all in the mind of the patient etc.
At the same time, the NHS Dorset are repeatedly denying this lady treatment based on this assumption. So in effect, NHS Dorset are repeatedly saying that CBT for ME is an utter waste of tax payers money.
And I couldn't agree more.
A study released Tuesday shows an existing antiretroviral drug can also ward off HIV infections in what researchers call a major advance in the quest to find medicines that prevent rather than simply treat AIDS.
The study of nearly 2,500 gay and bisexual men on four continents follows two other recent breakthroughs in AIDS-prevention research after years of frustration and as the cost of treating HIV/AIDS globally continues to rise, with about 2.7 million new HIV infections every year.
In the latest study, published online in the New England Journal of Medicine, gay and bisexual men who took the drug in pill form were 44% less likely to become infected than a control group taking a placebo.
By: Organiser - Annette Barclay
Do you know the history? Why would ME patients protest?
Read Jo Best's piece on the Barts 25th "Celebration"
Margaret Williams on Peter White's talk:
At the Barts Fatigue Service celebrations, Professor Wessely's talk is entitled: 'Where we were then, where we are now' and Professor White is to speak on: 'PACE Trial: is knowledge more useful than belief?'
Is knowledge more useful than belief? Not, it seems, where ME/CFS is concerned.
Why not? Because where the Wessely School is now in relation to ME/CFS is little different from where it was 25 years ago - their beliefs remain static and they have resolutely not moved forwards in the light of knowledge.
They perversely and irrationally reject the ever-increasing body of biomedical knowledge that ME/CFS is a serious neuroimmune disease and continue to believe that it is a somatoform disorder which is curable by
their favoured interventions of cognitive restructuring and incremental aerobic exercise.
Professor Peter White claims that 'a full recovery is possible'(Psychother Psychosom 2007:76(3):171-176); the PACE Trial CBT participants' Manual informs people that the PACE Trial therapies are curative, and it is elsewhere asserted that 'many people have successfully overcome their CFS/ME' with such behavioural interventions ('Information for relatives, partners and friends', page 123).
Such a belief is not supported by knowledge.
Thursday, November 25, 2010
In 2002, the Belgian government started with the development of CFS "Reference Centers", which implement a "psychosocial" model.
The medical practices of these CFS Centers are defined by the Superior Health Council, e.g. treatment should be based upon Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET); and biological assessments and treatments of ME/CFS should not be employed.
Recently, the Belgian government has evaluated the outcome of the treatments at the CFS Centers. They concluded that a "rehabilitation therapy" with CBT/GET yielded no significant efficacy in the treatment of ME/CFS
We seem to be slowly, but surely, getting lives. For real. Ali is past 40,000 of her 50,000 words for NaNoWriMo and functioning socially on a level that has been lost to her for years.
I'm trying to figure out what's the next step for me professionally, but I am ready physically to work part time, also functioning on a level beyond anywhere I've been for years. We are both solidly above 80 KPS points for the last couple of weeks.
I was out and about yesterday for five hours during which I pretty much didn't feel sick. That isn't the norm (yet?), but it is possible.
I don't experience the improvement day to day, or even week to week, but in two to three month increments, it is obvious. The instabilities are damping out. The ground is more stable, reliable. Even ...
By Richard Alleyne, Science Correspondent
Taking enough caffeine improves a person's power by as much as six per cent in any activity where muscles are not being worked to the limit – meaning coffee or tea would benefit a long-distance runner but not a sprinter.
The new discovery could have serious implications for the use of caffeine in top sporting events, because there is currently no law restricting the use of the stimulant.
Caffeine was removed from the banned substances list set by the World Anti-Doping Agency (WADA) in 2004 – meaning sportsmen and women could legally improve their performance by using extreme doses.
by Celeste and her cat, Keri
Celeste observed these funny feline rules for comfort years ago, but like the wisdom of the cat, they appear to be ageless.
• Just say no. No, you don't want to play catch. No, you don't want to entertain company. No, they are not going to sit where you are lying.
• Know your limitations; don't climb a tree if you don't think you can make it back down again.
• There are things that others can do that you cannot and it's okay. What is the purpose in running after frisbees anyway?
• It's not easy for others to tell when you are not feeling well. After all, you don't look sick. Sulk, lie around in unusual places, meow less, give a look like you're ready to die, and eventually they will catch on.
Libby Meyers was first diagnosed with ME in 2000 and by 2002 she was bed-bound.
A Dorset woman with severe ME who has been unable to leave her bed for eight years has been "left to rot" by the NHS, her family has said.
Libby Meyers, 62, is in a nursing home in Charlton Down near Dorchester but her family want her to be treated at a specialist NHS centre in Essex.
Her husband and daughter have appealed three times but their applications have been rejected by NHS Dorset.
In a letter to the trust, Oliver Letwin, MP for West Dorset, said he was "dismayed" that attempts by Mr Meyers to obtain proper treatment had failed.
Wednesday, November 24, 2010
By: The Patient Advocate
The Patient Advocate was reading the NY Times Science section this morning when he noticed the front page article on Dr. Ian Lipkin. The PA had seen the online version yesterday but was pleased to see this in the real paper.
The first question that came to the Patient Advocate's mind was - why this extensive profile of Dr. Lipkin and why now?
It was only when the PA got to the last paragraph of the article that the PA understood what this article is about.
Make some NOISE for M.E. wish to END GLOBAL IGNORANCE of M.E. The long held misunderstandings of this illness contribute to the global neglect of sufferers. Society need to know the truth and Governments need to stop the denial and accept the facts. The price being paid is with peoples lives.
Make some NOISE for M.E. Website: http://msnforme.webs.com
Make some NOISE for M.E. on facebook
Over the past 20 years, Dr. Lipkin has built a reputation as a master virus hunter. He has developed ways to quickly identify familiar viruses and ways to search for new ones.
The emergence of H.I.V. in the 1980s first drove Dr. Lipkin to search for viruses. At the time, he was a neurology resident at the University of California, San Francisco, and was watching many patients fall ill with AIDS.
It took years for scientists to discover the virus responsible for the disease. Dr. Lipkin worried that in years to come, new viruses would claim more lives because of this lag. “I saw all this, and I said, ‘We have to find new and better ways to do this,’ ” Dr. Lipkin said.
One reason that viruses can be so hard to find is that they’re so small — typically a few millionths of an inch across.
Not only does this government want to reduce the chronically sick and disabled to penury, they now appear to want us dead, too, based on this, from Pulse magazine:-
GPs told, cut unplanned admissions by a fifth
GPs are to be told they must reduce unscheduled hospital admissions by a fifth by the end of 2013 as one of a series of brutal Government targets to keep hundreds of thousands of patients out of hospital each year.
There are many whose conditions pretty much guarantee unscheduled admission to hospital – they can’t bloody well schedule a crisis, now can they? What of them?
There is no doubt whatsoever – deaths will result from this policy. The only question is – how many?
Health care is as much a financial industry as it is a medical science. The two drive each other. One can not survive without the other.
Although it may be comforting to think of health care as an altruistic industry in which patient care always trumps economics, that is not and can not always be the case.
Less than altruistic ambitions of acquiring economic profits also comes into play, both amongst medical practitioners and institutions.
Tuesday, November 23, 2010
A major diplomatic and political scandal is erupting that could have significant import for French-American relations. It involves new research into the mysterious outbreak of “mass insanity” in a village in southern France that affected some 500 people and resulted in five deaths.
According to the report the inquiry regards a recently-published account of U.S. government complicity in a mysterious 1951 incident of mass insanity in France in the village of Pont-Saint-Esprit in southern France.
A book just released in the United States, detailing exhaustive interviews with now-retired US intelligence personnel who had direct knowledge of the 1951 French events, charges that the until-now unexplained “mass insanity” in the remote village were, rather, a top-secret CIA experiment conducted under the code-name Operation Span.
The book, A Terrible Mistake: The Murder of Frank Olson and the CIA’s Secret Cold War Experiments, by investigative journalist H.P. Albarelli Jr. documents that the Pont-St.-Esprit outbreak in 1951 was the result of a covert LSD aerosol experiment directed by the US Army’s top-secret Special Operations Division at Fort Detrick, Maryland.
178 cases of breast cancer were examined for the presence of XMRV using the described methods.
Approximately 25% of breast cancers contained either XMRV proviral DNA sequences or XMRV proteins. The XMRV proteins were seen exclusively in the malignant breast epithelium.
Comedian Dave Ismay thought he was dying for 10 weeks, so he went about completing his "bucket list"—which included such extravagant entries as buying a $41,000 Mercedes—only to find out doctors got his diagnosis wrong. Ismay, who performed with English comic Bob Monkhouse for 20 years, was told liver cirrhosis would kill him in three months, but doctors later realized he actually has a treatable hereditary condition.
Monday, November 22, 2010
Transcript of Frontline documentary on ME from 1993:
PH: The one absolutely clear-cut clinical feature in this disease is the personality profile of the people who develop it. Many of them have profound psycho-sexual difficulties with partner relationships and life in general, and they, uh, they’re people who just aren’t very happy with the life situation that they find themselves in. Now most of us would say, “now, I recognise that in myself”, if you like, but it’s a question of how you react to it.
In one particular incidence I came across recently, the father said that if he peeled the potatoes for dinner, he was completely exhausted for several days. Now, I do not believe for one moment that that reflects organic dysfunction of any aspect of the nervous system from the motor cortex [points to his head] down to your fingertips. I think that is bound to be, to use a colloquial phrase, “in the mind”.
PH: Dr Peter Hudgson, consultant neurologist, Newcastle General Hospital
Channel 4 Frontline documentary on ME:
It features the young Lynn Gilderdale, then a year and a half into her long illness, as well as Ean Proctor, who had been forcibly removed from his family and subsequently subjected to abusive treatments in hospital.
EP: Ean Proctor, teenage boy who had been severe ME sufferer
LG or Lynn: Lynn Gilderdale, then 15-year-old ME sufferer
RH: Rosemary Hewitt, ME sufferer (Royal Free outbreak)
RG: Richard Gilderdale, father of Lynn
BP: Barbara Proctor, mother of Ean Proctor (EP below)
Cholesterol-lowering drugs have a useful side effect - killing bacteria, scientists have discovered.
The statin drugs taken by millions of people around the world to cut their risk of heart disease may protect against serious infections such as pneumonia, researchers believe.
A US study found that the medications activate the bacteria-killing properties of white blood cells.
In laboratory experiments, phagocyte blood cells that kill and ingest foreign invaders became more effective after being exposed to statins.
PS: CBT i.e. Cholesterol Blocking Treatment kills bacteria
Spending my time working on the AONM Conference presentation for Dec 12, I am very pleased indeed with what I did yesterday. So powerful; not because of me but the sheer force of the material. This is going to be good.
Blind patients suffering from a type of eye disease that strikes in childhood will become the second group of people in the world to receive stem cells derived from spare IVF embryos left over from fertility treatment.
The US Food and Drug Administration (FDA) has given the go-ahead for the controversial transplant of embryonic stem cells into the eyes of patients with Stargardt's macular degeneration, where the light-sensitive retina cells at the back of eye are destroyed.
"What the AIDS patient learned to advocate for was not compassion from the public, was not sympathy from the public - what they learned to advocate for was research dollars, research funds."
"Focus energies on getting money for research. Find out the etiology of this disease." (in this case he was speaking of Lyme)
"Focus on research, not suffering."
"Dont blame your adversaries" "Bring them (your adversaries) in, don't cut them out." Otherwise you will have to wait until they are dead - and that could be a long time.
“Develop coordinated activism" How do we best get funds to study this disease?
"Scientists have already uncovered a lot about ME,
but this information does not reach professional healthcare personnel
and the disease is still not taken seriously.
It is about time this changes."
From Wikipedia, the free encyclopedia:
Luc Antoine Montagnier (born 18 August 1932 in Chabris, Indre, France) is a French virologist and joint recipient with Françoise Barré-Sinoussi and Harald zur Hausen of the 2008 Nobel Prize in Physiology or Medicine, for his discovery of the Human Immunodeficiency Virus (HIV).
I was asked to comment on the XMRV research. In Oct 2009 a virtually unknown Institute in Reno, Nevada, the Whitmore Peterson Institute, published in Science exciting research in which they claimed to have discovered a new relationship between the XMRV virus and CFS/ME. This was exciting news, we hoped it was the initial foundation of proof, that CFS/ME was a physical disease.
Within 6-8 weeks, miraculously, papers were in publication denying the original research. Usually it takes my Medical Center several weeks to allow a research proposal to proceed, followed by several weeks or months for the research to be completed and then several weeks or months for journal acceptance and publication. So I was astounded, as were others, at the time frame of the response, the journals and the relationships of the publishing research centers.
Saturday, November 20, 2010
By: Jo Best:
Celebrating 25 Years of Patient Abuse and Medical Negligence at St. Bart’s, London, 29th November.
Adapted from the blurb on St. Bart’s website about the event: http://www.bartscfsme.org/
The CFS/ME NHS clinics
These are based on the NICE guideline and our psychiatric model of ME/CFS. Even if the lead clinician is not a psychiatrist, the “treatment” offered is still only CBT and GET, perhaps with some anti-depressants thrown into the mix to keep the buggers subdued.
What started as a malicious rumour has now become a widely held belief that many patients given the label of CFS do not have ME. We call our clinics “Fatigue Clinics”.
As we very well know, fatigue is a symptom of a large number of health conditions, which require completely different medical management from ME; therefore results from our treatment programmes at such clinics cannot, in truth, be extrapolated to the ME/CFS patient community, yet we manage to get away with it as the truth is merely an irksome obstacle, easily masked by smoke and mirrors, fudged, and our speciality, psycho-babble.
The majority of ME patients find no effective help or treatment from these clinics and are often made worse by them.
Like, we care!
Those that had antibody responded and met the primary endpoint significantly greater than the placebo group, and also significantly greater than those who were negative for the Ab.
A number of abnormalities found in patients with chronic fatigue syndrome point to central nervous system (CNS) involvement.
These include immunologic abnormalities, indications of pituitary and hypothalamic involvement, abnormal basal plasma levels of certain neurotransmitter metabolites, and cerebral perfusion abnormalities.
The possibility that a novel human retrovirus may be present in patients with the syndrome needs further study.
PS: Publication from 1994 !!!
The new CDC CFS/ME Website is scandalous, dangerous and reprehensible. The CDC is now adopting the UK’s treatment protocols for CBT, GET, professional counseling and they even say that lifting light weights and stretching can help people with CFS feel better. The CDC is sending doctors to the UK’s St. Barts website for treatment guidelines (including NICE).
They lie about XMRV, serious infections, immune and neurological dysfunction in patients. This is a serious misrepresentation of how severely ill patients are. The CDC CFS website is where treating doctors look for clinical guidelines, testing and treatments. It is also where the media looks for information and your families!
CDC CFS/ME New Website Denies XMRV
The CDC fails to mention the XMRV studies from NIH, FDA, Harvard, National Cancer Institute, WPI and Cleveland Clinic. The CDC denies any connection between XMRV and ME/CFS!
Sakuma T, Department of Molecular Medicine, Mayo Clinic, College of Medicine, Rochester, MN 55905 USA
A novel gammaretrovirus, xenotropic murine leukemia virus-related virus (XMRV), has been identified in patients with prostate cancer and in patients with chronic fatigue syndromes.
Standard Mus musculus laboratory mice lack a functional XPR1 receptor for XMRV and are therefore not a suitable model for the virus.
In contrast, Gairdner's Shrew-mice (Mus pahari) do express functional XPR1. To determine if Mus pahari could serve as a model for XMRV, primary Mus pahari fibroblasts and mice were infected with cell-free XMRV.
Infection of cells in vitro resulted in XMRV Gag expression and the production of XMRV virions.
After intraperitoneal injection of XMRV into Mus pahari mice, XMRV proviral DNA could be detected in spleen, blood, and brain.
Intravenous administration of a GFP vector pseudotyped with XMRV produced GFP-positive CD4-positive T cells and CD19-positive B cells. Mice mounted adaptive immune responses against XMRV as evidenced by the production of neutralizing and Env- and Gag-specific antibodies.
Prominent G-to-A hypermutations were also found in viral genomes isolated from the spleen suggesting intracellular restriction of XMRV infection by APOBEC3 in vivo.
These data demonstrate infection of Mus pahari by XMRV, potential cell tropism of the virus, and immunological and intracellular restriction of virus infection in vivo.
These data support the use of Mus pahari as a model for XMRV pathogenesis and as a platform for vaccine and drug development against this potential human pathogen.
Friday, November 19, 2010
This is the text of a complaint letter I just submitted to the BBC regarding the ME storyline that is ongoing in Casualty, the BBC medical drama, which features an ME sufferer mentally abusing his wife (a nurse!) and we are told that he is to be shown abusing her physically as well. I thought this was a very unrealistic portrayal given that ME sufferers are far more likely to be victims of abuse than perpetrators.
You can find the BBC's complaint form here (please don't copy my letter, as it will make it look like an orchestrated complaint-bomb campaign):
Imagine you are a high-flying law professor at the height of your career. You have a happy marriage, are involved in the local community, love your subject, and enjoy working with students.
Your socio-economic position is comfortable, and your family relationships are gratifying. In short, life is smiling at you, and you are smiling back.
Then you go to Paris—and everything changes. A mysterious bug floors you. Standing up becomes a struggle, noise bothers you, and you are magnetically attracted to your bed.
Days go by and doctors reassure you it will go away. Except that it doesn’t, and ten years later, you are still bed-bound.
This is the perfect storm that hit Toni Bernhard—and the other 17 million people in the world who are estimated to be suffering from myalgic encephalomyelitis (also controversially known as CFS, or chronic fatigue syndrome).
At its worst, this Kafka-esque illness is as debilitating as late-stage cancer, multiple sclerosis, and HIV—but it is not fatal, and so does not carry the drama (or empathy) associated with them.
There is no cure for it and patients—including children—are largely left to themselves and their families. It can hit anybody, at anytime, anywhere in the world, without any warning.
When doctors are baffled, friends desert you, and your life goes upside-down, where should you turn? Read more>>
It's a "kiss and tell" look at the CDC and NIH and follows the political history of an epidemic swept under the rug by the medical / insurance / pharmaceutical cartel, endearingly referred to as Goliath.
It exposes the dirty side of medicine, in their own words, as physicians choose business to healing. This book addresses issues faced by most who experience chronic disease.
A new Vermont movie is being released Friday. It's called "Invisible" and it's about Chronic Fatigue Syndrome.
The CDC estimates about 1 million Americans suffer from Chronic Fatigue Syndrome but the disease remains a mystery to many.
Director/Producer Rik Carlson, the man who made this movie, also suffers from Chronic Disease Syndrome.
Asked how you know if you have it, he responded, "Oh you know, it's way beyond just being tired." But Carlson said, "I'm not here to whine. I'm not here to talk about my personal illness."
"The purpose of this film is Read more>>
Thursday, November 18, 2010
Sunday, December 12 · 10:30am - 5:00pm
This Conference is an opportunity for people who are affected by Fibromyalgia and/or Myalgic Encephalomyelitis as well as Health Care Professionals to gain knowledge of these conditions relating to the most up to date research and also treatment options.
We are delighted to announce our very special guest speaker Dr Sarah Myhill.
Philadelphia, PA, Wednesday, November 10, 2010: Hemispherx Biopharma, Inc. (NYSE Amex: HEB) announced today grant awards totaling $488,958 from the U.S. Department of Treasury in support of its Ampligen® and Alferon® development programs.
These awards were approved by the Internal Revenue Service (IRS), in conjunction with the Department of Heath and Human Services (DHHS), under the Qualifying Therapeutic Discovery Project Program, established under the Patient Protection and Affordable Care Act of 2010 for projects that showed significant potential to produce new and cost-saving therapies, support jobs and increase U.S. competitiveness.
The amounts granted for these two Hemispherx projects were for the maximum per-project amount set by the IRS based on the limited amount of funds allocated for the program.
Wednesday, November 17, 2010
Dalheimers House, Thursday, 2 December 2010.
Is the mystery solved? Can we finally start to breathe again? Causes murine retrovirus, such as XMRV- virus or other closely related MLV virus, ME / CFS?
Prof. Jonas Blomberg, Uppsala University. Jonas Blomberg, who works with Clinical Virology, has investigated the possible existence of XMRV virus in Sweden.
PhD Judy Mikovits, Director of Research, WPI - Whittemore Peterson Institute; Nevada, USA. Judy Mikovits belongs to the research team at WPI has found the probable link between XMRV and ME / CFS.
When we examined patient blood samples that had originally tested negative by DNA polymerase chain reaction by more sensitive methods, we observed that they were infected with XMRV; thus, the DNA polymerase chain reaction tests provided false negative results.
Therefore, we conclude that molecular analyses using DNA from unstimulated peripheral blood mononuclear cells or from whole blood are not yet sufficient as stand-alone assays for the identification of XMRV-infected individuals.
Complementary methods are reviewed, that if rigorously followed, will likely show a more accurate snapshot of the actual distribution of XMRV infection in humans.
How would you react if you were left to deal with a chronic disease that medical professionals are at a loss to explain its causes and more importantly its cure?
What effect do you think it would have on your life if one day you began to cough and continued to cough and then began to lose weight - only to finally find that you had somehow lost your comprehension faculties? How do you think you would fare with your boss, your friends, your family? And then to be told: "It's all in your mind...you need some cognitive therapy..."?
By now, most Chronic Fatigue Syndrome sufferers have lost their job, lost their friends and are Read more>>
Tuesday, November 16, 2010
The Blood Working Group has 4 "trials" with XMRV in ME/CFS patients that they are running. Phase I was to set up the four labs of which the WPI, CDC, FDA and another one tested their ability to find XMRV in spiked samples. That one was completed a couple months ago.
Phase II is how to find XMRV in ME/CFS patients and it will define the "gold standard" that is used from here on out. The protocols that are necessary in order to find XMRV in patients include handling, storage, primers, assays - the whole shebang.
The Phase II portion should have been finished and the information released no later than the first week of November. They talked about it at the First International XMRV Conference in September, indicating they almost had it worked out and then. At the October CFSAC meeting they promised to release the information as soon as it was ready. The available information indicated the results have been released to a portion of the scientific community but not to the patient population or researchers at large.
Since the release of the information to the patient population would allow us to compare the "correct" way to find XMRV to all the other "ways" that people are trying to find XMRV then it's pretty important that the information be available to us. Plus, it settles the "contamination" question once and for all.
The release of this information is critical to patients, researchers world-wide as well the general public. Ask them to make good on their promise.
How Read more>>
I am writing you because basically I am about to Give-UP HOPE of you EVER finding a Solution for me and many like me in OUR Lifetimes. I literally do NOT have YEARS left after 24 years of this already.
To add insult to this, because of the "well documented" LACK of Research fover the last 25 Years OR the CDC taking us as a Serious Illness.. I have NOT been able to find a Dr that KNEW ANYTHING ....even tho they thought they did.. as in "It's All in your Head."
It has taken me the last 12 years to Finally get my current Dr, who admitted to me BY HIM< "to the End of his Knowledge about 4 years ago".. but because he KNEW I had some Medical Knowledge, I kept searching and learning and feeding him and his staff INFO and Research and they have FINALLY AGREED to that I AM INDEED Permanently Disabled, even tho my car has had a Placard for 4 years now... nothing for me....YET.
Monday, November 15, 2010
In a recent medical publication (BMC Medicine, 2010), the correlation between CFS and chronic inflammation associated with LGS was examined. This paper explored the research on CFS and concluded that a chronic inflammatory state may be one of the foundation stones of CFS.
They also suggested that a “leaky” gut would be a likely source for the regular introduction of pro-inflammatory and toxic compounds into the body. These compounds can damage DNA and inhibit energy production resulting in fatigue, muscle weakness and pain, and changes in memory and cognition.
Conclusions: 29% of our participants with CFS had a personality disorder, compared to 7% of the well controls. Our results suggest that CFS is associated with an increased prevalence of maladaptive personality features and personality disorders.
maladaptive personality is not specific to CFS, it might be associated with illness per se rather than with a specific condition.
More Psycho blah blah by William C. Reeves.
Friday, November 12, 2010
Full transcript here.
Or listen to the interview here.
Thursday, November 11, 2010
Wednesday, November 10, 2010
Sponsored by: Dr John H Greensmith, ME Free For All.org
We the undersigned request that all information relating to M.E. (Myalgic Encephalomyelitis) and CFS (Chronic Fatigue Syndrome), including correspondence with the medical profession (Ref: BN 141/1), held in the National Archives, Kew, UK, as a closed document and not available for public access, after 78 years, until 2072, is made freely available.
It is believed that such revelation may yield clues that might lead to effective treatments and hopefully a cure for this dreadfully debilitating illness, which affects millions of people worldwide.
This petition is in addition to a freedom of information request, made by its creator and an open letter to a national British newspaper co-signed by a majority of representatives of people with M.E.
By: Domenick Yoney, green.autoblog.com
Back in February of 2009, a fellow hailing from Croatia showed up on DIY Electric Car, a forum for EV builders and conversion enthusiasts, saying he wanted to build an electric that is faster than 99 percent of the ICE cars out there.
After many months of trials, tribulations and design changes, "CroDriver" may have done just that.
But then, what else would you expect from a guy who uses a derivation of Newton's first law of motion – velocity is equal to distance traveled divided by time taken (V=S/t) – as the name of his company. Introducing the very slick, very quick BMW bi-moto electric vehicle.
So, how quick is it? Read more>>
IT started with extreme fatigue.
Within months, Kerry Still was barely able to get out of bed, her career was in tatters, and she was suffering from a raft of mystery symptoms that left her physically and mentally shattered.
At first Kerry, from Chandler’s Ford, thought she was coming down with a cold, but after months of sheer exhaustion she knew something was seriously wrong.
In 2002, three years after first seeing a doctor, Kerry was diagnosed with ME.
“ME is a debilitating and frustrating illness that can make you feel alone and misunderstood. But I’ll never give up hope that one day scientists will find a cure.”
That this House notes that despite the fact that the Department of Health now accepts myalgic encephalomyelitis (ME) as a genuine medical condition, diagnosis can still pose a problem because ME symptoms are similar to those present in a number of other medical conditions;
recognises that one of the main obstacles to the adequate treatment of ME is the lack of knowledge and consensus about the disease; believes that funding and research must be focused on the bio-medical factors involved and not just simply managing the psychological symptoms; requests that the Government establishes an independent scientific committee to oversee ME research;
and calls on the Government and the Medical Research Council to work with ME sufferers and bio-medical researchers in order to achieve a proper understanding of the condition's challenges and unjust perceptions of the condition.
Tuesday, November 9, 2010
Three women die together in an accident
And go to heaven.
When they get there, St. Peter says,
'We only have one rule here in heaven:
Don't step on the ducks!'
So they enter heaven, and sure enough,
There are ducks all over the place.
It is almost impossible not to step on a duck,
And although they try their best to avoid them,
The first woman accidentally steps on one.
Along comes St. Peter with the ugliest man she ever saw.
St. Peter chains them together and says,
'Your punishment for stepping on a duck is to
Spend eternity chained to this ugly man!'
The next day,
The second woman steps accidentally on a duck
And along comes St. Peter,
Who doesn't miss a thing.
With him is another extremely ugly man.
He chains them together
With the same admonishment as for the first woman.
The third woman has observed all this and,
Not wanting to be chained
For all eternity to an ugly man, is very,
VERY careful where she steps.
She manages to go months
Without stepping on any ducks,
One day St.Peter comes up to her
With the most handsome man she has ever laid eyes on
.... Very tall, long eyelashes, muscular.
St. Peter chains them together without saying a word.
The happy woman says,
'I wonder what I did to deserve being
Chained to you for all of eternity?'
The guy says,
'I don't know about you,
But I stepped on a
Monday, November 8, 2010
Gulf War Veteran Deaths for First Week of November 2010.
Six Gulf War Veterans 1990-1991 died in the first week of November. Their ages were 44, 48, 54(2), 61, and one age not known. Four were Army Veterans and 2 were Navy veterans. One had previous service in Air Force and one previous service Marines. One was a veteran of Vietnam service and one had served in the recent wars in Iraq and Afghanistan.
We honor them and their survivors by remembering them. We hope that if they had illnesses since the time of their service in the Gulf War 1990-91, that these illnesses are documented. They definitely have died an early death. The government will honor them more if they fully declassified all records from the Gulf War 1990-91.
The Gulf War 1990-91 was a war of environmental hazardous exposure soups. These veterans and their families need to be honored and remembered and action taken so that lessons are learned for our country.
Help for their fellow veterans after 20 years is sorely absent. How many more will die before the truth is fully known by their families, loved ones, fellow veterans, and the American public?
Download Dr Sobetzko's 2010 Calendar
Chronic fatigue syndrome rehabilitation, by Tristan Mellin and Anne Harriss, personneltoday.com, 08 November 2010
"The client may have unhelpful thoughts and behaviours relating to work including a fear of losing their job, and a perceived lack of understanding from managers and colleagues. They may have concerns about their physical abilities and consequently discontinue leisure activities worried that pushing themselves too hard will result in delay to recovery."
Sunday, November 7, 2010
John Davis will fly over the Alpine mountains, cross the Atlantic Ocean and navigate his way over the sand dunes of the Sahara, in his very own flight simulator.
What started as a flight of fancy has turned into a hobby of jumbo proportions after the 50-year-old built an £18,000 Boeing 747-400 simulator in his spare bedroom.
‘I’ve always been interested in planes and I dreamt of becoming a pilot from a very young age – but I was never any good at maths, so this is the next best thing,’ said Mr Davis, from Coventry.
He and eight ‘crew’ plan to fly around the world to raise money for Warwickshire and Northamptonshire Air Ambulance.
Saturday, November 6, 2010
Scotland’s community of 10,000 multiple sclerosis sufferers will be focused intently on a hotel in Clydebank this weekend, where the potential of a controversial new treatment will be debated by clinical experts.
Specialists from Poland, Canada, Bulgaria, Jordan and the UK will come together to discuss the theories of Dr Paulo Zamboni, an Italian vascular surgeon, who claims that the symptoms of MS can be treated by clearing the blocked veins which cause toxic build-ups in the brain.
Already, dozens of Scots with MS have travelled to eastern Europe to be treated for Chronic Cerebro-Spinal Venous Insufficiency (CCSVI), which involves balloon angioplasties or stents being fitted into the jugular and azygos veins in the neck.
The procedure to tackle CCSVI is the most talked-about MS regimen in recent years, and is already a multi-million-pound industry with treatments costing around £7000. Now, a group of doctors from the fields of vascular, neurological and radiological medicine will meet in Glasgow to discuss Dr Zamboni’s theories.
But does CCSVI work? Read more>>
M.E. is an infectious neurological disease and represents a major attack on the central nervous system (CNS) – and an associated injury of the immune system – by the chronic effects of a viral infection. There is also transient and/or permanent damage to many other organs and bodily systems (and so on) in M.E. M.E. affects the body systemically.
Even minor levels of physical and cognitive activity, sensory input and orthostatic stress beyond a M.E. patient’s individual post-illness limits causes a worsening of the severity of the illness (and of symptoms) which can persist for days, weeks or months or longer.
In addition to the risk of relapse, repeated or severe (individually determined) overexertion can also cause permanent damage (eg. to the heart), disease progression and/or death in M.E. (See the sections below for more information.)
It is the combination of the chronicity, the dysfunctions, and the instability, the lack of dependability of these functions, that creates the high level of disability in M.E.
It is also worth noting that of the CNS dysfunctions, cognitive dysfunction is one of the most disabling characteristics of M.E.
Thursday, November 4, 2010
XMRV has recently been identified in patients with prostatecancer and Chronic Fatigue Syndrome (CFS). CFS patients have an increased incidence of lymphoproliferative malignancy compared to the normal population.
While the incidence rate of non-Hodgkin's lymphoma is 0.02% in the United States, nearly 5% of CFS patients developed the disease.
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 antineoplastic activity in these neoplasms and what is the optimal combination of antiretroviral drugs.
[Note: the testing was conducted in Barcelona, not sent back to the U.S.]
You can read the story in Spanish here:
Spanish to English translation, a combination of Renee and Mary Schweitzer (thanks Renee!)
Wednesday, November 3, 2010
Dr. José Montoya of Stanford University was next. He started explaining that six years ago he met his first CFS patient, and since then he has visited more than 450.
He is sure that you can develop CFS after a viral infection, and he believes that 11 % of patients that suffer EBV, Q fever, Ross River virus, etc, can end up with a CFS.
About Dr. Judy Mikovit’s paper he remarked that since it was published everybody is turning to CFS with the intention to find out all they can because they have completely changed their opinion.
In a random, double-blind, placebo-controlled study they have found that there was a clinical improvement in patients who were taking valganciclovir for a period of more than six months, compared with placebo.
CFS patients met Fukuda’s international criteria and had high antibody data against HHV-6 and EBV.
Several immunological markers changed significantly in the treated patients that were not seen in patients taking placebo. This study will be submitted for publication this month, and provides evidence that CFS is a real illness that can be caused by an infectious agent that can be treated with prolonged antiviral intervention.
They are also working on the hypothesis that besides the antiviral mechanism there could also be an immonumodulater component in the good results.
Tuesday, November 2, 2010
The latest Australian research has revealed why putting a baby to sleep on its stomach dramatically increases the risk of Sudden Infant Death Syndrome.
Babies monitored as they slept in this unsafe position were found to have a reduced blood pressure and an increased heart rate, compared with when they slept on their backs, as recommended.
These effects were most pronounced in babies aged two to three months, the age when babies are most at risk of SIDS.
Associate Professor Rosemary Horne, from the Ritchie Centre at Monash University, said, ''For the last 15 years now we have been looking at what is different about babies sleeping on their tummies.''
She said parents now had a reason to follow the advice ''don't sleep your baby on its tummy''.
THE AUSTRALIAN Government has rejected the pleas of war veterans to recognise the existence of Gulf War Syndrome, thwarting the hopes of hundreds for extra medical aid and compensation.
Despite being recognised in both the United Kingdom and the United States, an investigation by the Repatriation Medical Authority, the results of which were announced in the authority's annual report, found the syndrome was not an injury or disease as defined by Veterans' Entitlements Act.
Veterans' groups said yesterday they were devastated by the ruling and felt abandoned by the country they had risked their lives to protect.
Former soldier Bruce Relph said, ''I'm disappointed that countries in the northern hemisphere have recognised GWS but our Government won't it's unfair and unjust.''
But the Department of Veterans' Affairs said Australians who served in the 1990-91 conflict already had access to compensation and medical care, despite being denied recognition for the syndrome.
More than 1800 Australians served in the 1990-91 conflict, with hundreds estimated to be afflicted with the syndrome.
Exposure to sarin nerve agent and organophosphate pesticides, and medications, such as pyridostigmine bromide pills, issued to personnel as protection against disease and nerve gas attacks, have been linked to the disease.
Monday, November 1, 2010
A driver involved in the UK's worst mass water poisoning has told an inquest he had to guess which tank to put 20 tonnes of aluminium sulphate in.
It affected the drinking water of about 20,000 homes in Camelford, Cornwall, causing rashes, diarrhoea, mouth ulcers and other health problems.
Carole Cross, 59, who lived in Camelford at the time of the poisoning in 1988, died 16 years later.
Large amounts of aluminium were found in her brain after her death in 2004.
The immune systems of CFS patients exhibit both chronic activation and dysfunction.
We plan to learn more about the association of XMRV and other pathogens with CFS by examining an outbreak cohort not previously screened for the presence of XMRV. Other viruses, microbes, and parasites that may be associated with XMRV will also be detected with the use of a panmicrobial DNA microarray.
We will determine whether the presence of XMRV and/or other pathogens is related to the current state of health of individuals who became ill during a 1985 outbreak in rural New York. Assuming that most members of the New York cohort are infected with XMRV, we will amplify and sequence XMRV envelope genes derived from blood cells of 40 individuals who became ill as children in 1985.
We will also sequence envelope genes from 80 subjects in the Nevada cohort known to exhibit a high degree of XMRV infection. We will examine phylogenetic relationships between the Nevada and New York XMRV variants and will observe whether any amino acid substitutions correlate with the current state of health of the subjects. We will also study the possible association of XMRV and XMRV protein expression in the phenomenon of exercise intolerance. We will examine XMRV-infected CFS patients before and after an exacerbation of symptoms caused by serial exercise testing.