Dx Revision Watch
Suzy Chapman Owner of Dx Revision Watch
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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I do wish some of you would read what I have said.
I know who the authors are.
That is not what I am asking.
Those are old documents on that webpage.
Maybe you should reread the cognitive impairment sectionI do wish some of you would read what I have said.
PENE is not exclusive to ME. There exists an entire class of neuro-immunological diseases that produce the same symptom.
Because these are criteria, rather than a definition that includes pathology, there will again be patients that meet these criteria without actually having ME. Only, this time around they will not be psychiatric patients.
Regards,
Guido
PENE is not exclusive to ME. There exists an entire class of neuro-immunological diseases that produce the same symptom.
Well, they do say that they are working on Physicians' Guidelines which will include treatment protocols, and treatment guidelines should help patients. But more important than that, this will give researchers who want to find biomarkers a legitimate set of criteria they can use and cite for their patient cohort. It will also give researchers who may be less familiar with ME/CFS (retrovirologists, for example) a much clearer set of criteria to use in patient selection. And I think that good ME/CFS researchers, like the members of IACFS/ME, will welcome it.And when it comes to the important matter of 'What does this do for me?' as a patient and in terms of 'better treatment', then I am afraid that it also falls down here too.
Of course not. The psychiatrists aren't going to roll over and say "oops, we were wrong" just because an international panel of experts refute what they say. And the prejudice they've created in the medical community won't go away magically either. But there are a lot of good doctors out there who would like to help their patients, who have been lacking good information and don't have time to do extensive research, who will probably welcome this.The psychiatrists' - if you like - argument of patient illness belief is not overcome in any way by me walking into my doctors office and waving a copy of this ICC under his nose.
I'm not sure whom you believe to "count the most." But the thing which will convince the medical community that we're not all nutters is good, solid research. Especially if that research results in lab tests they can use. And better-defined patient cohorts will lead to better research.This does not constitute 'proof' of anything. Not in the eyes of those who count the most. 'International consensus' or no International Consensus.
Maybe you should reread the cognitive impairment section
Firestorm, It seems to me that unless they would allow you or Suzie to define what ME is in your own mind, you will not be satisfied,
This group of doctors, biologists, scientists have been involved with this illness for decades all over the world. How many patients do you think they have collectively seen or studied? They have no other motive or agenda besides helping to define this illness, to name it and then better to be able to study it and come up with answers.
Why can't you see the benefit of what just transpired? Is it because personally you don't find it adequate? What are your credential and experience studying this illness. I truly believe that some people here will not be happy with any progress.
O course you and Suzie and others have every right to express what you feel but, sometimes-ok many times members automatically assume that they know better that all the great minds in the field.
Why push this advance by the medical community out the window even before all the problems can me ironed out.
I for one think that we should all e-mail to each and all the members of this comity to thank them for all their hard work they have done FOR OUR BENEFIT. They don't get anything out of this except heartache from all the complainers.
Neilk. I found this ICC Short Version earlier: http://www.meassociation.org.uk/wp-content/uploads/2011/07/ICC-short-version.pdf Am not sure if that is the same as the one you posted above - as the link didn't work for me.
Btw I have not read it yet
"here may be marked fluctuation of symptom severity and hierarchy from day to day or hour to hour."
straight from the paper.
Only idea I have on Jason is that he is not doctor of biology. He is psychologist. This criteria was about biology and what is seen in clinical care. So, his expertise may not be germane to claiming what symptoms identify the disease. He may be in position to find fault with others, but to assert what does identify the disease is not in his area of expertise.
Who are these people? When did they come together? Why was this rushed out?