For oss med ME er diett viktig. Derfor lager jeg et innlegg der den som har lyst kan legge inn sin erfaring eller oppskrifter/produkter som de vet om. Det kan være glutefrie produkter, eller andre produkter som ikke inneholder melk, hvetemel eller sukker som er kjent som de tingene man som ME-Pasient ikke burde bruke for mye av- Det er vanelig og ha intoleranse mot disse produktene.
Håper dere har noe og bidra med. Det kan være produktnavn, oppskrifter eller annet.
(Jeg resirkulerer dette løftet. Om dette ikke blir gjennomfør skal jeg love at det skal bli en stor kampanje mot Arbeiderpartiet ved neste stortingsvalg!)
Ap-landsmøtet: Et løft for de ME-syke!
Bjørn Jarle Røberg-Larsen sier følgende: Jeg sendte inn fire forslag i forkant av årets landsmøte i Arbeiderpartiet. Et av dem ligger nå an til å bli vedtatt av landsmøtet – og alle pasienter med ME/kronisk utmattelsessyndrom har stor grunn til å glede seg!
(Tusen takk Bjørn Jarle Røberg-Larsen for ditt engasjement for oss ME-Pasienter ) Dette er virkelig store nyheter for oss!
Vedtatte endringer i Arbeiderpartiets program Kapittel 5 Dele: Velferd og rettferdighet Linje 1587
Craig Maupin (www.cfidsreport.com)
History relies on more than the past. History also relies on the present, on current perceptions and interpretations. A historian’s beliefs, experiences, and hopes form half of the story.
The history of this CFS (chronic fatigue syndrome) is as rich as its past has been poor. It is a history worth protecting and honoring, and I have no doubt that someday it will offer lessons to future generations. But recently, I have been concerned that myths are replacing our history, particularly in regard to the CDC (Centers for Disease Control and Prevention). What are those myths?
Myth 1. William Reeves was, until recently, a bold innovator. His objectivity was lost in recent years, when he suddenly decided CFS was a stress disorder.
First, William Reeves was extremely cautious with regard to his public statements about CFS. Despite his tact, he offered his thoughts when asked by an advisory committee in 1995 what he thought caused CFS. He said that “the risk factor that we are finding most highly associated with chronic fatigue syndrome are multiple major lifetime stresses in the year before one becomes ill” (1). This stress-predominant view toward CFS did not change throughout his tenure in the CDC’s CFS program.
Secondly, evidence of Reeves’ predilection toward CFS goes beyond his 1995 comment. Reeves (a) spent no money searching for a novel viruses, (b) he showed little interest in following up on distinct, previously published immune findings. By 2001, he began to invest the larger portion of his budget in the psychiatry department at Emory. The precise targeting of those investments within the psychiatry department at Emory is even more important. Psychiatrists at Emory, such as Christine Heim and Andrew Miller, specialized in post-traumatic stress response and anxiety.
Third, three of Reeves’ most frequent collaborators (Andrew Lloyd, Wessely/Cleare at King’s College, and James Jones) propose very similar models for the illness, models that emphasize a viral/lifestyle/emotional stress as the precipitating factor, with brain/behavior as the primary perpetuator.
Myth 2. For years, sufferers have accused Reeves “of thinking ME/CFS was a psychological disorder but his open-ended attempt to merge gene expression, gene polymorphism and laboratory and clinical data suggested he was open, at least at that point, to various interpretations of the disease.”
This statement is based on the belief that biological research and genetic research belong to biomedical fields, not psychiatry. While that belief is understandable from a layman’s perspective, it is not accurate. Current models of psychiatric disorders are multidimensional: stress trigger, genetic predisposition, lead to biological effects and behavioral perpetuation. Today, depression, stress disorders, and anxiety disorders are researched with an emphasis on genetics, behavioral interventions, neuroendocrine imbalances, and mild immune alterations. (2).
Myth 3. The CDC’s Dubbo Infections Outcomes contract with Dr. Andrew Lloyd, a virologist, shows openness to looking viral models of causation.
Lloyd and his collaborators were far more forthcoming with speculation about CFS than Reeves. Long before Reeve’s chose Lloyd as a collaborator, Lloyd’s published work failed to reveal any signs of predilection toward a viral model for CFS: “Current evidence suggests disruption of fundamental central nervous system mechanisms, such as the sleep-wake cycle and the hypothalamic-pituitary-adrenal axis, may underpin the clinical features of this disorder.” (3) One of his most widely covered papers in 1994 stated: “Psychological factors such as illness attitudes and coping style seem more important predictors of long term outcome than immunological or demographic variables” (4). The list goes on.
History will judge virologists involved in CFS, such as Andrew Lloyd, Stephen Strauss, William Reeves, NOT by how well those virologists were able to detect XMRV, Epstein-Barre, or any other virus. History will judge them on how accurately they interpreted their own viral research. History will also evaluate whether their beliefs/attributions influenced their sample selection. Until a biomarker for any disease is found, the attributions and feelings of the researcher toward those who suffer from the disease has a much greater bearing on their conclusions than tests. The clinical beliefs and observations are the foundation of their input.
In Kaiser’s article, the Pharmacogenomics study design was not only closely examined, but concerns were voiced about the CDC’s conclusions. Concerns about the small sample size and the lack of validation with PCR were aired. Most importantly, the implication that the conclusions of the CDC team were significantly exaggerated was raised by a variety of researchers from diverse fields.
Furthermore, some severe flaws of the study were not included in the Science article, perhaps due to space constraints. First, the study limited its results only to those genes involved in the HPA axis. Even worse, the conclusion of the study’s authors that three genes — serotonin, glucocorticoid, and tryptophan – immediately extrapolate to an illness caused by an accumulation of lifetime stresses required, at minimum, an extremely robust imagination. And the authors of the study never bothered to support such a large leap of faith with sources or citations.
Despite these flaws, the leadership at the CDC and the study’s authors decided that the study merited a shift in the conceptualization of the illness to a disorder of accumulated stress, and a press conference was called to proclaim that shift. For many, this decision was deeply discouraging and damaged the CDC’s credibility as an objective research entity.
It is true that some of our most visible advocates, organizations, and clinicians participated in that press conference. Researchers and clinicians such as Nancy Klimas and Anthony Komaroff hailed Reeves’ findings. Understandably, this participation damaged the CFS community’s confidence in many. That damage was intensified as Reeves unveiled more details of how the Pharmocogenomics study was to inform clinical guidelines of his five year plan.
My concern is that many who participated in the CDC’s efforts to shift the conceptualization of CFS believe that revising history — particularly the history of William Reeves and his views toward CFS — is a suitable way to recapture the CFS community’s confidence. The CFS community wants to move on. It wants healing. But it also wants its history to remain intact.
In Conclusion
The findings of the Whittemore-Peterson-Institute (WPI) research team stepped onto a field of discouragement in October. The CFS community is well-aware that these preliminary findings may have one of many different conclusions. That said, the WPI’s commitment and goals to those with this illness are unquestioned.
Given the climate following the CDCs 2006 press conference, the WPI had no option but to speak publicly on their findings. It was a historically-aware attempt to encourage fresh expertise to enter CFS research with a new perspective.
The WPI has been sharply criticized for that decision by some in the scientific community who seem more enthusiastic about conclusions of the Pharmacogenomics study (including Lloyd, Reeves, and King’s College). However, the decision of the WPI reflects a solid understanding of the historical difficulties of funding certain types of CFS research, as well as an understanding of the traditional, tightly-managed CFS research establishment. It is a solid understanding of history that causes a “people” over “protocol” decision to seem sensible and necessary. And that is why our history, our true history, is so important.
(1) Reeves, W. Presidential Advisory Committee on Gulf War Illnesses. November 7,1995.
(2) Several resources are available that are use for laypeople who want to become more informed about the types of genetics and biology that are emphasized in modern psychiatry. Below are posted a few books with large previews available (Google books). These texts can give anyone a general sense of what areas of biology are emphasized in PTSD. A brief skimming with the question “What areas of biology are emphasized?” is all that is required to become more educated on the subject.
Vasterling and Brewin’s ‘Neuropsychology of PTSD: biological, cognitive, and clinical Perspectives‘ (2005) is an excellent place to skim.
The Psychobiology of Trauma and Resilience Across the Lifespan (2008) by Douglas Delanty explores genetic susceptibility and current genetic research.
3) Hickie I, Lloyd A, Wakefield D, Ricci C (1996). Is there a post-infection fatigue syndrome? Aust Fam Physician Dec;25(12): pg. 1847-1852.
(4) Wilson A, Hickie I, Lloyd A, Hadzi-Pavlovic D, Boughton C, Dwyer J, Wakefield D. (1994) Longitudinal study of outcome of chronic fatigue syndrome. BMJ Mar 19;308(6931):756-759.
(5) Kaiser, J. Jocelyn Kaiser. Genes and Chronic Fatigue: How Strong Is the Evidence? Science 2006; 312: 669-671
http://www.atlantaunfiltered.com/2010/02/05/cdc-reeves/
The Atlanta-based CDC has reassigned its chief researcher into chronic
fatigue syndrome, a longtime target of scientific organizations and
patient advocacy groups around the country.
Researchers in Nevada last fall reported a strong correlation between
chronic fatigue syndrome and XMRV, a retrovirus related to the one
that causes AIDS. The potential breakthrough has excited the 1 million
or so Americans with CFS who are looking for treatment.
The CDC’s research program, led by Dr. William C. Reeves, had no role
in that study, and Reeves was dismissive of its findings. Critics said
that was because the agency had wasted $100 million on looking for a
possible psychological explanation for CFS and dismissing outside
research that looked for a viral cause.
Finally, last fall, a CFS Advisory Committee called on Health and
Human Services Secretary Kathleen Sibelius to install “progressive
leadership” to direct CDC’s efforts to find a cause and cure for the
disease. The panel did not identify Reeves as the obstacle, but
minutes show the committee had discussed whether to name him.
The International Association for Chronic Fatigue Syndrome, a
500-member group of medical professionals, has repeatedly challenged
CDC’s focus and its new five-year plan for CFS research. Its
president, psychologist Fred Friedberg, testified in October:
“After 25 years (and over $100 million) of CDC research, chronic
fatigue syndrome remains a stigmatized illness without substantive
progress on public health policy or objective diagnosis and treatment.
And their new five-year, $25 million plan fails to inspire any
confidence that change will occur.”
CDC spokesman Tom Skinner said today he had “no direct knowledge” of
the reasons behind Reeves’ reassignment, other than the agency’s
belief that his expertise was “a good fit” for his new role.
“As far as his salary goes, it’s a lateral move for him,” Skinner said.
Starting Feb. 14, Reeves will be senior advisor for a new mental
health surveillance program that will explore how various diseases and
conditions affect mental health. Virologist and cancer researcher Dr.
Elizabeth R. Unger becomes director of the Chronic Viral Diseases
Branch (CVDB), which includes the CFS program, on an interim basis.
“Looking for a permanent director will commence as soon as possible,”
Skinner said.
The transfer comes on the heels of the CDC’s reassignment last month
of Dr. Howard Frumkin, who had run the CDC division that deal with
public health problems associated with formaldehyde contamination in
trailers provided to victims of Hurricane Katrina. Frumkin became a
special assistant to the CDC’s director of Climate Change and Public
Health.
CFIDS Association applauded the leadership change in the CDC’s
research into the disease:
“The CFIDS Association of America, other organizations and advocates
have vocally supported new program leadership to effect a more robust
research effort at CDC. This staffing change has the potential to
significantly advance CFS research beyond the agency’s intramural
program and to seize scientific momentum generated by recent
discoveries.”
A joint letter appealing to the nation to start taking ME seriously appears in The Daily Telegraph today. It is signed by 20 leading figures in the ME debate – including parliamentarians, clinicians, researchers and figures from the ME national organisations and patient support groups.
Breaking the ME enigma
SIR – The death of Lynn Gilderdale and the humane verdict in the trial of her mother brought home to many people for the first time what a devastating illness myalgic encephalomyelitis (ME) can be.
Many of the estimated quarter of a million people with ME in Britain experience not only extreme pain and disability, but also incomprehension, ignorance, lack of sympathy and at times outright hostility, not only from the public but also from professionals responsible for their care.
Siste kommentarer