“I can no longer write professionally any more. There is nothing else I want to do. Nothing else I can do. I am too weak, too tired.”
She described her “happy life" as a classical musician, teacher and writer up to the day she fell ill.
“…ME put a stop to all that,” she wrote.
During her 18 years of illness, years during which she experienced a decline that resulted in no fewer than four heart attacks in her final two years, she was offered little by way of treatment, what she was offered did not help, and she suffered the double insult of being caught up in a mass delusion fostered by psychiatrist-quacks in England and the U.S. that her disease was psychological.
“I’ve had a wonderful, happy life. Now it's over. What I want now is for campaigners, such as Action for M.E, to use my story to push the Government hard on medical research,” Weston wrote sometime before she took barbiturates on September 9, 2009.
Who is responsible for the 25-year horror movie that is the story of this disease? I’m offering, for your consideration, some of the major players in the drama, letting you know, if you didn’t know, a few of the things they said and did along the way. I offer these names with a caveat—given time and space constraints, it’s impossible to cover the waterfront, and what’s below is merely a taste of the activities these people engaged in that prevented resolution of this disease for a generation, leaving millions around the world to rot in bed for decades, or die of cancer or heart failure twenty years before their time, or choose death over life. Here, for your consideration, are some of the guilty parties. I leave any discussion of motive to the reader and will say only that although most of these people are scientists, scientific considerations have never been paramount or even apparently part of their thought processes.
• Since 1984, director of the National Institute of Allergy and Infectious Diseases (NIAID) at the NIH in Bethesda. Member of the National Academy of Sciences. Between 1996 and 2006, the tenth most cited AIDS-HIV researcher.
*Close friend and ardent supporter of NIAID’s Stephen Straus, the internationally influential architect of the psychoneurotic theory of “chronic fatigue syndrome." (Straus died in May 2007.)
• Considered the American “AIDS Czar” and the recipient, for his institute, of billions of dollars for AIDS research. For the year 2009, Fauci's budget was $4.7 billion.
• The person who advised NIH director Harold Varmus in 1999 to move “chronic fatigue syndrome” out of NIAID and into the dead zone of the ineffectual and unfunded Office of Research on Women’s Health at NIH, a stunningly irresponsible and cynical decision. Fauci made this move on the heels of a General Accounting Office report critical of the NIH's history in "cfs."
Fauci refused several requests from me for interviews in the 1980s-early 1990s, because, as the NIH public relations staff continually told me, Fauci didn’t feel he knew enough about “chronic fatigue syndrome” to discuss the disease. At the eleventh hour, after I suggested to NIH staff that Fauci’s open admission of years of ignorance about this disease might look peculiar in my forthcoming book, Fauci’s deputy, a patrician-looking man named Tom Hill, suddenly agreed to speak to me. Hill assured me he had been authorized by Fauci to speak on Fauci’s behalf on the subject of “cfs.” He insisted that he could supply me with Fauci’s insights and views with complete accuracy.
I showed up at Hill’s office with my tape recorder; he was flanked by a public relations specialist with her own tape recorder. We amicably set them side by side, cassette reels turning, in the middle of the table.
Said Hill: “Fauci wonders why the patients are so upset about being labeled with a psychiatric problem. I remember he said to me, ‘Haven’t we come far enough along in our society that mental illness needn’t carry a stigma?’”
The PR person winced and adjusted her body in a way that attracted Hill’s attention and caused him to look, momentarily, like a deer caught in the headlights.
Hill went on to admit that the disease ranked “number two in time consumption, at least, in terms of our responses politically and to the public—mailings, et cetera—after AIDS.” Even so, he continued, Stephen Straus was “the only person that we have in our institute who is interested in this particular area.” He said patients with "cfs" were lucky to have Straus working on "cfs." He added that scientists and administrators at NIAID, including Fauci, relied one-hundred percent on the clinical acumen of Straus for their understanding of the disease.
The following comes directly from Osler’s Web: “If his agency learned that the disease was in fact an infectious viral illness similar in many ways to AIDS, would Hill and [Fauci] retract the psychiatric conclusions drawn by Straus and promoted by the institute with such vigor through the conduit of the lay press?
“A surprised ‘No!’ was Hill’s initial response. But he quickly amended his remark: “I think that we are scientists. Now, let’s say—hypothetical situation—if, in fact, the evidence is clearly there that this is a single viral etiology—I mean, we’re scientists—I think we would be big enough to admit that we have discovered the cause.’”
Three years earlier, AIDS Czar Fauci testified before congress: “In the absence of a breakthrough,” he told the appropriations subcommittee with the authority to fund NIH science, “we do not know how to proceed.”
It's hard to know where Fauci thought that breakthrough might occur, since NIH's de facto policy was to refuse extramural researchers grant applications.
That continued to be Fauci’s position for the next two decades, as NIAID went on to create ad hoc committees dominated by behaviorists and, even more incredibly, dentists to review grants from experts in the field. Using these incompetent grant review committees, the agency refused to fund nearly every grant proposal going forward, most notably, proposals from UCSF molecular biologist and HIV-discoverer Jay Levy; University of Pittsburgh Cancer Institute scientist Seymour Grufferman, a nationally recognized cancer epidemiologist who identified evidence for infectiousness among a simultaneous cluster outbreak of “cfs” and B cell lymphomas; and Elaine DeFreitas, a retrovirus investigator and rising star at the world-renowned Wistar Institute in Philadelphia who had identified evidence for retroviral infection in “cfs” in the late 1980s.
In 1989, Fauci personally accompanied Stephen Straus to Capitol Hill and thence to the Longworth House Office Building, where they dropped in on Rep. John Porter of Illinois. Fauci saw Porter as a key political figure for two reasons; Porter sat on the House subcommittee for appropriations and Porter had a reputation (undeserved) as a proponent of the disease. Fauci told Porter that patients were applying undue pressure on Congress that, in turn, was being felt at NIH. Congress, Fauci lectured Porter, had no business telling scientists how to perform their jobs—i.e., what diseases they should be researching or how NIH money should be allocated to any particular disease. Straus, Fauci added, ‘wanted to be left alone to pursue his research as he saw fit, free from congressional scrutiny and demands.’” (Osler’s Web)
Porter seemed awestruck by Fauci, according to Porter’s administrative aide. The aide took a provocative pose with Fauci, however, raising the possibility that Straus was indeed mistaking an organic disease for a psychiatric one.
Fauci would have none of it. Instead, he expressed puzzlement over CFS victims’ vehement reaction to being told their difficulties were psychiatric, according to the aide.
“Look if I tell someone they have an ulcer, they don’t get upset, but ulcers are related to the brain,” Fauci responded.
Actually the cause of stomach ulcers had been identified as a common bacterium H. pylori seven years earlier.
In 1991, the year Pamela Weston acquired this disease in Great Britain, Fauci again testified before the House congressional subcommmittee with oversight over the NIH and funding powers. He admitted no one at NIH understood what signs and symptoms constituted a case of the disease.
"I think we are having some slow success in tracking them down...We are making progress, but it remains a very perplexing and elusive problem," Fauci said.
He admitted that within the entire NIH, not even one scientist was working on "cfs" full-time.
"This is one of the many diseases that is the responsibility of our extramural program," he continued, but failed to mention that NIAID had rejected nearly every grant proposal on the subject.
Nevertheless, Fauci requested $2,651,000 for "cfs" research that year.
Next up: Stephen Straus...
Comments
Mary Schweitzer, Ph.D.
The more I research this, the more I am stunned. I have read your book cover to cover and used it as a guide to the political aspects of the condition. It beggars belief.
Has anyone ever approached someone like Michael Moore to do an expose ... He is a sensationalist at times, but he would probably expose things as they are ...
Desperate times ...
Of course the issue is that labeling it as psychiatric takes all attention and funding away from doing research on ME/CFS that might actually make us well, or at least better. Hundreds of thousands of Americans have no hope of ever living a viable life again thanks to the government's refusal to support research due to the fact that the questions about the disease are all effectively silenced and squashed by labeling it psychiatric.
http://joanne-orangecottages.blogspot.com/
Here in the UK, as with everywhere else it seems, we are dismissed by our GPs and offered no treatment, or if we are 'lucky' enough to get in at one of the UK's CFS Clinics we are offered CBT or GET.
It was initially bewildering to me why these clinics are all run by psychiatrists, I thought perhaps they were there to exclude a diagnosis of depression, then I stumbled across the MEActionUK website and began reading and it all started to become clear. The head honcho psychiatrist, the loudest proponent of the illness belief camp, has a prominent role within a major health insurance company and advises the MoD with regard to Gulf War Syndrome, another of his illness belief targets.
So where does that leave us, firmly up s*** creek without a paddle. Proving something really is going on with our bodies has been very difficult as the usual tests we will be given via our GPs or Neurologists, whatever, will come back normal. This is because they are looking in the wrong place.
Under MEActionUK's research section, I learned about research covered in a paper published in the Journal for Clinical and Experimental Medicine in Jan '09, 'Chronic fatigue syndrome and mitochondrial dysfunction'. It is now available from the PubMed Central archive: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2680051&tool=pmcentrez
Having read the paper with interest, I contacted one of the co-authors, Dr Myhill, and paid to have an ATP Profile test done. The results show significant mitochondrial dysfunction.
In simple terms the ability for my body to make body on demand is severely impaired as is its ability to recharge once its energy has been used up. The high cell free DNA score of 22ug per litre indicates the likelihood that some tissue damage is occuring because I've been struggling to function well enough to hold down my job. My body's been forced to make energy in more destructive ways.
The results also showed significant deficiencies in the micro-nutrients necessary to support mitochondrial function. Magnesium for example, a deficiency in this alone would elegantly explain some symptoms: Insomnia, mood swings, tinnitus etc
This appears to be a simple and relatively inexpensive test to demonstrate an observable biological disease. Why the mitochondria are malfunctioning is perhaps another story, however, just having proof that all the strange and debilitating symptoms are not figments of the ME / CFS imagination is of great benefit to someone consigned to the CFS wastebin.
Personally, although the result isn't exactly great, it's come as a profound relief to have proof that there is something wrong with my body, not with my head. The psy-quacks almost had me believing them at times.
When I first challenged my GP as to his beliefs about CFS he said he thought a psychological component was involved. and denied any knowledge of any research pointing to an organic cause.
Having seen the test results, he is now finally interested and has supplied me with all the micro-nutrients I need that can obtained on the NHS.
I've been wracking what's left of my brain to think how we raise the profile of the bio-medical research into CFS, the mis-appropriation of research funds by the psychiatric agencies to force the government to take action to stop treating us as mentally unstable.
Is it possible to bring a Class Action or similar against the people, organisations responsible for the neglect of CFS in the US? I don't believe it exists as an avenue of redress under UK law.
I shall bookmark your blog and follow with avid interest.
Regards,
Sue Howley