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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Testable, testable, testable - this is such an interesting issue. I am going to flip this on its head and say by definition the ICC and ME is NOT testable yet - at least in the eyes of the research world. Why? Because no studies have been done on ME yet...Not one study has examined brain injury, endocrine, vascular problems etc in ME! They've all been done on CFS...every laboratory test that is supposed to distinguish ME (from CFS no less) has been done on Fukuda defined CFS patients - but that's another story.
Thank you Ric - you explained everything very well. (Beyond hurling insults,
I don't know what Michael was referring to. I don't know what PH is.)
I posted here to actually commend Cort for his write-up. I think he did a good job.We have an actual ME definition.
There is really no such thing as ME/CFS. It is another made up term that can be
used to mean different things. ME and CFS are not the same but ME/CFS implies
that they are. It isn't even a new name. Would AIDS patients have settled for
Gay Plague/AIDS, or would MS people have accepted Hysterical Paralysis/MS.
IMEA is not an ME group, but all about ME/CFS, as is the mecfsforums, from
which this group arose. There was a lot of harassment and rudeness there also,
but was ALL one sided, with a core inner circle controlling the show.
The testing issue may be somewhat as Cort said, but if drs have a def and can
relate to the disease being presented, they can figure out what to test for. As a
whole the US groups are working against us.
Nielk - Having a distinct and recognizable definition means that testing is possible
and reliable. That's what's missing with CFS. Rhode Island is in the US so
yes we are Americans!
By "us", you mean Americans because in your previous post you left that part out. Since you are American - by saying US, you mean Americans. So, what you are saying is that all US groups are working against US patients???????????????????????????????????????????????As a whole the US groups are working against us.
Firestorm, the diagnosis is key. Throwing ME into the CFS mix has caused all
of the problems. Yes ME can be weeded out. It is not a fatigue syndrome. We get out or
nothing will change. Repeating a lie does not make it true, nor does the made up
ME/CFS nonsense. No more made up "compromises" like encephalopathy, ME/CFS
or CFS/ME. CFS was our slave name; ME/CFS is our Stockholm Syndrome name.
Here's a hint - this is what Wessely does. So yes Firestorm, your conclusion was
correct - go USA!
Anyway...
Chicken and Egg situation then is what you seem to be suggesting? We need the criteria before we can get research actually aimed at Myalgic Encephalomyelitis. Hmmm... Not according to the authorities we don't. Same disease, innit
Ember, The authors of the ICC did not adopt the name ME, they specifically updated the definition of it. Otherwise creating some new mythical ME/CFS, which has no *established usage or meaning, is absurd and likewise dangerous.
I guess then you chaps had better campaign hard at the following meeting.
Because if they do merge the two (assuming 'ME' is actually recognised as distinct by the authorities
in the US at present), then it could be a case of 'welcome to the club sandwich'
'The next meeting of the U.S. Department of Health and Human Services CFS Advisory Committee will be a potential venue for discussion of impacts on funding and policy (including Social Security disability), with a recommendation that the U.S. federal agencies adopt ME/CFS as a replacement for CFS still under review by the Secretary of Health and discussion of case definition a regular feature of agency reports and
discussion.'
I don't have a date for that - do you?
What did you make of the CFIDS review: http://www.research1st.com/2011/07/25/me-case-definition/ ?
The ICCME is being presented as something that should be adopted instead of Chronic Fatigue Syndrome and not co-existing as a distinct disease.
Reeves was left standing:
Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.
The CCC definition of ME/CFS has been changed:
The Canadian Consensus Criteria were used as a starting point, but significant changes were made.
No other fatiguing disease has 'chronic fatigue' attached to its name e.g. cancer/chronic fatigue, multiple sclerosis/chronic fatigue except ME/CFS.
ME/CFS? Transitional. History. Time to move on.
The ICC is an ME definition. Not instead of CFS or ME/CFS.
The CCC is an ME/CFS definition, so this is not an updated CCC definition.
Jill
Reeves was left standing:
Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.
The CCC definition of ME/CFS has been changed:
The Canadian Consensus Criteria were used as a starting point, but significant changes were made.
No other fatiguing disease has 'chronic fatigue' attached to its name e.g. cancer/chronic fatigue, multiple sclerosis/chronic fatigue except ME/CFS.
ME/CFS? Transitional. History. Time to move on.