MaryS, God bless her, makes an attempt to attend every CFS Advisory Committee in DC and to speak for those of us who live too far away and can't be there.
Read her testimonies (plural) at http://www.cfids-me.org/marys/
"What can you do? Write, FAX, telephone, and/or email your Congressional representatives and NIH secretary Donna Shalala to request that the meeting be postponed until a true state of the science, balanced, collection of experts from all fields of medical expertise can participate. Call family and friends and ask that they do the same. Write CNN, ABC, NBC, CBS, FOX; your local media outlets; popular columnists; Oprah Winfrey. Washington-area PWC's should write to the Washington Post requesting a good investigative reporter be assigned to find out why Stephen Straus has been permitted to exercise such control over government spending on this disease, given his clear bias toward psychological causation (hypochondria) and overt disdain for the research of others. Ask why NIH has been permitted to completely ignore the research experts appointed to the Congressionally-chartered CFSCC. Ask whether our representative government has finally been replaced by a government of barricaded autocratic bureaucrats. And if you live outside the United States, ask your nation's government to lodge a formal protest against this travesty of justice."
Some of those suggestions are outdated (e.g., Straus died a few months ago), but writing letters to media is always a good idea. You can quote Mary on this "The bulk of published peer reviewed research on CFS today occurs not in psychiatry, but in the fields of neurology, cardiology, immunology, endocrinology, and biochemistry - as a quick search of Medline will confirm."
There's also the question, deserving of an investigative reporter, of why, after a government audit required reimbursing the CFS research budget millions of dollars, CFS research money was again misused. (Pat Fero keeps track of where our research money is going.)
No comments:
Post a Comment