We have the report, and it's extremely good. Perhaps the name and definition could use a little improvement, but they're already vastly better than "CFS" and the Fukuda definition.
So now how do we make sure that the NIH and CDC implement the recommendations regarding symptomatic treatment, including a lack of GET or primary use of anti-depressants and CBT as supposedly helping with the core disease?
How do we make sure they start seriously funding the biological research which we need, perhaps starting with a call apologizing to Dr Lipkin and offering him some cash for his study?
How do we ensure that they disseminate appropriate information to a variety of practitioners and in educational settings?
How do we ensure that they actually adopt the new definition and name to replace the old ones?
My concern is that these agencies have a habit of misrepresenting, underfunding, and neglecting our illness. And the pattern looks rather deliberate. How do we stop them if/when they try to ignore this report or block it from being implemented? Hopefully they're starting to get the message, and we won't have to fight them for it, but based on experience we need to be prepared and equipped to fight them for every inch of progress.
So now how do we make sure that the NIH and CDC implement the recommendations regarding symptomatic treatment, including a lack of GET or primary use of anti-depressants and CBT as supposedly helping with the core disease?
How do we make sure they start seriously funding the biological research which we need, perhaps starting with a call apologizing to Dr Lipkin and offering him some cash for his study?
How do we ensure that they disseminate appropriate information to a variety of practitioners and in educational settings?
How do we ensure that they actually adopt the new definition and name to replace the old ones?
My concern is that these agencies have a habit of misrepresenting, underfunding, and neglecting our illness. And the pattern looks rather deliberate. How do we stop them if/when they try to ignore this report or block it from being implemented? Hopefully they're starting to get the message, and we won't have to fight them for it, but based on experience we need to be prepared and equipped to fight them for every inch of progress.