Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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if the CDC are in charge of the vaccine programme they will not love ME as we know that vaccines can trigger ME.
I dont think the CDC attitude is an oversight, I think they know why they ignore us.
Folk always love bringing such up about the "enemy/other side" and ignore fact you get similar crap on "Our" side, too, because they are entirely Human problems.Lysenkoism is used colloquially to describe the manipulation or distortion of the scientific process as a way to reach a predetermined conclusion as dictated by an ideological bias, often related to social or political objectives
Now let us pray:
For statistically very significant epidemiological study, including all biological dimensions, of the seriously ill bedbound, housebound, and near-housebound patients with "CFS"or M.E.
For equivalent major epidemiological study of the wider cohort of patients beginning at north Nevada and the other five major outbreaks of the 1980s and working up to a national distribution from there. This must be extensive, in person from the start, and relying biological parameters. No telephone surveys and no unrepresentave skews like Reeve's Georgia-only studies.
For an immediate re-write of the CDC web material so that it cites work on biomarkers and symptoms (immune,viral,genetic,neural, gastrointestinal) and at the same time eliminates harmful and disproven recommendations for CBT and GET.
For CDC guidelines on "CFS" and ME patient precautions before and after surgery.
For overhaul and removal of key NIH personnel who have blocked research and funding for the past 25 years, wrongly exiling "CFS" from NIAID. (It is now the only disease common to men that had to find refuge under "Women's Health")
For the epidemiological studies to result in thoroughly documented and well-defined name or names.
For at least $150 million per year in research grants for biomedical research, including biomedical treatment and cure."
Hi Cort--How are you? How hot is it in San Miguel?We opened a CDC CFS Resource Center that includes links to article and blogs here. Suggestions are welcome.
We opened a CDC CFS Resource Center that includes links to article and blogs here. Suggestions are welcome.
I would love to see Dr. Reeves' testimony to Congress and DHHS included. http://www.cfids.org/advocacy/reeves-statement.aspWe opened a CDC CFS Resource Center that includes links to article and blogs here. Suggestions are welcome.
Silverblade, isn't there an expression in Scotland that goes, "Nothing stranger than folk.?" This means, no animal or other life form is as strange as human beings. Is that right?
I am struck, as usual, by your imaginative power. I hope you will harness it for us. Others here have visual, metaphoric and intellectual gifts too which could be brought to bear on the public perception and the institutional views and treatment of us. There is a place for careful, reasoned scientific presentations, for legal approaches, for first person story ones, but also for imaginative ones--for film, cartoons, theatre, street theatre, political art and the like. Am thinking again of the gay community and the ways they found to communicate about their experience with AIDS.
From North of England actually, and very true!
"There's nowt as queer as folk"
Mindy Kitei: CAA’s comments to Sarah Mcg, “Sarah, we receive no funds from CDC” may be accurate, but they are deceptive, as CAA has received millions from CDC. In 2006, for instance, the CAA wrote on its website:
“National CFS Public Awareness Campaign to Launch This Summer”
“We have some very exciting and important news to share with you. The CFIDS Association will be launching a $4 million public awareness campaign on chronic fatigue syndrome this summer. The campaign is so exciting because we finally have the chance to mount a national, concerted, multifaceted campaign to educate both the general public and health care professionals about CFS. The public awareness campaign will extend for more than a year, starting with a launch event at the National Press Club in Washington, D.C., in June that will include a satellite media tour accessible not only to the media, but to the patient community and general public.
“PRIMARY FUNDING FOR THE CAMPAIGN HAS BEEN PROVIDED BY THE CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC) [emphasis added]. The funding came from the health marketing arm of the CDC, leaving their CFS research budget intact. The CFIDS Association was selected as the contractor to implement the campaign. To help with the campaign, the Association hired two of the country’s top PR firms, Fleishman Hillard and GMMB, which both have considerable experience with national health marketing campaigns. Both agencies are involved with research, strategic planning and creative development of campaign components.”.