Hi caroline, two points need to be emphasised I think, although I do not disagree with your main arguments. The vested interests are going to fight for the status quo. The have the influence in government and institutions. However, this document does send out one message: the former leading CFS researchers will no longer sit by and allow the CFS label to be foisted on them, they are now willing to stand by the original diagnostic label of ME.
ME has a very long medical research history before the CDC pushed CFS on us. That is my first point. This is not about proving an ME label, its about abandoning the failed CFS label. We are just going back to the old label with an updated diagnostic criteria.
The second point I want to make is that we are on the verge of having a definitive diagnostic test for those well enough to do a little exercise. PENE, post exertional neuroimmune exhaustion is the basis for the new ME diagnosis, and it is physiologically verifiable. It can be tested for, measured, monitored. It is not a subjective claim - but it costs thousands of dollars to test for. It is now the case, if the science continues to advance where I think it is going, that the insurance companies can indeed insist on hard proof, but its going to cost them thousands of dollars more. Their choice - save a stack of cash and allow people to get insurance, or lose the cash and have to pay anyway. They are not going to like this, but it is already happening in court cases I suspect, and I think this is the future of diagnostic testing for the medium term.
As the science advances I think that even the bed-bound patients will eventually be able to be tested and get an ME diagnosis. There is already talk of a reduced exercise version of the repeat exercise testing, they only need to establish the trend on mild exercise instead of the intense exercise they have used so far.
This diagnostic criteria is I think the preamble for the upcoming physicians diagnostic and treatment guide. It is in the works, I just don't know when it will become public - Nancy Klimas said so publicly some time ago, iirc.
I love the fact that genitourinary problems is listed as criteria. I have IC and I know that those with IC usually have fatigue, but it's listed as part of ME. I feel that all of my diagnosis' are really just the same thing....ME. It's going to take me awhile to remember ME. I am so used to CFS after 23 years of having it. Thank you for posting this.
I LOVE this. I only wish I had this prior to the "over 2 yr" denial from my LTD Ins company. I had all the tests and almost all the symptoms, but felt like a mouse fighting a lion. I had the PENE test done, but it was not used as I had hoped it would be....
I hope this can get to others who are trying to get their insurance companies to recognize that ME really is a disease. I made a copy and plan on using it quite a bit.
This is one of the documents I searched for so desperately for so many years!
If there is anything you suggest besides sending a copy to Dr's, please let me know. Are there any places on Phoenix Rising that I should go to that has suggestions about where or who to send this to so we can push this even harder to the public?
I would like to send this to a TV Newstation!!!!
Thanks for finding this... I say as I weep.... I truly, truly truly hope we can push this for so many others that are fighting the system because they can no longer work and may have no income....