October 2, 2007
It's Time to Change the Diagnostic Criteria
I wonder if any effort at all is being made to change the hugely outdated case definition and diagnostic criteria as well [as the name]. As most know, the current Fukuda criteria is too vague and is not an accurate depiction of CFS, particularly since it can exclude post-exertional malaise (which is truly the hallmark of CFS).
I am very optimistic about the name change and hope it will lead to good things. However, I feel it is equally important to update the case definition, perhaps adopting the Canadian version. This is not only more accurate, but a definition agreed upon by just about every CFS specialist in the U.S. Adopting this case definition will not only help legitimize CFS, but will help bring better and quicker diagnosis, treatment, awareness and research. It will also help to solve the problem of prevalence, and eliminate those with other "fatiguing" illnesses. - Laurel
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Suggest We Petition for a Proper Clinical Definition
I've written before but want to emphasize the importance of getting CFS wiped "off the slate" so to speak. It is so important for so many reasons and I don't need to reiterate them here. But I think we have an equally important concern regarding an appropriate clinical definition. I do hope that this is "in the works" and that I can quit telling everyone that only by reading the Canadian Case Definition or reading through Dr. Hyde's work, etc. can a person truly understand what ME patients have. It's time for the U.S. to get to work on clarifying and defining a proper clinical definition…
I would like to see some formal online petitions directed at the proper government authorities where we all can voice our demands to our government about producing a "correct" and "useful" clinical definition of the illness we are all disabled by so that we don't have to fight for benefits. Yes, there is a social security ruling about this, but it is still up to the uneducated clerical worker's discretion. And I'm sure they are controlled by insurance moguls to deny as many as possible with ME patients most likely to be denied. Plus there is the ever present pressure for an ME patient to accept benefits on the basis of a psychological disorder rather than a physiological illness. - Nancy
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It’s What Goes Under the Name That Counts
All this business about changing the name is absolutely useless if they don't change the diagnostic criteria. Honestly, adding the term ME to the vague Fukuda criteria could be one of the worst things that could possibly be done here. It would completely and utterly water down the term ME.
Remember, it's not just the name itself that has caused us so much struggle. It's what goes under the name - the diagnostic criteria! So vague that misdiagnosis is absolutely rampant, people with all sorts of illnesses, both serious and non-serious, physical and mental, all shoved under the term 'CFS'. Now they'll just be shoved under the term ME/CFS. ME will lose all credibility just like CFS.
It's because of this massive misdiagnosis that we struggle so much - why so many 'magic cures' are pushed on us (because they might have helped other people with the diagnosis – never mind whether they were correctly diagnosed or not!). It's one of the reasons why we so frequently hear "Oh yeah, I know so many people with that, but they got over it. Maybe you're not being positive enough." It's why we have to struggle for benefits - because all sorts of people with undiagnosed, untreated illnesses have the CFS tag and are trying to get benefits too.
Do you know that some of these vague diagnostic criteria actually exclude people with ME because "People with CFS aren't that sick - there's something else wrong with you". Now it'll be "People with ME aren't that sick - there's something else wrong with you." Under the Wessely school of thought, it's believed that if anyone has any physical abnormalities found, it's not ME/CFS. People with severe neurological symptoms are frequently excluded from the diagnosis because this is a 'fatigue' illness. Yeah, right!
And probably the worst thing of all is that these vague diagnostic criteria are supported by the governments. And so naturally, any money that the governments give for research will go to research that selects patients by these guidelines. These guidelines basically ensure a mish-mash, podgy wodgy heterogeneous group of patients. And so what happens when you do research on a group of patients with all different illnesses, thinking they all have the same illness? The results are inconclusive! "We have concluded that there are no consistent biomedical abnormalities within ME/CFS patients" "We have concluded that [enter physical abnormality] is not a significant problem within ME/CFS patients." And here are people sitting around waiting for a cure, thinking it's just around the corner. A basic treatment probably won't even come about for decades if this keeps up!
Please, I wish people would realize that on the surface, CFS appears to be the issue. But bringing a more creditable name into use will do nothing for us if more credible diagnostic guidelines are not implemented on a large scale in conjunction with it. (The Canadian, the Nightingale, even the ancient Ramsay guidelines are 100% better than Fukuda.) And ME is one of the only thing this group of very ill patients has - a historic, neurological name, listed in the World Health Organization’s International Classification of Diseases, in the neurological section. The term is already muddied in the UK, as ME is used with the vague Oxford criteria. ME has almost as little credibility in some parts of the UK as CFS. Do we really want that? Do we really want to completely muddy one of the only things people with neurological ME have going for them?
The name business is messy. I support the eventual phasing out of CFS as a disease category completely. However, it's not just CFS that has to be phased out, but the Fukuda and Oxford criteria and any other criteria based on it (such as that issued here in Australia by the Royal College of Physicians). And it needs to be done together - at the same time. Having the CDC attach ME to Fukuda is a nasty, nasty move, and I wish the patient groups could see that.
At this point in time, pushing forward the Canadian criteria is the most important and vital move. Once this happens, I can ensure you, given a convalescence period (which may happen quickly in some areas, and slower as older generations of doctors retire in other areas), things WILL get better for us. Misdiagnosis will go down considerably. Finally all those people with all different illnesses will get the help they need for their illness - as they don't fit into the Canadian criteria and so can't be 'dumped' in the CFS category. [This] will leave the doctor to actually have to look for what's wrong with them. Hopefully a distinction between ME and common, reasonably short-lived post-viral states will be made.
Eventually, with time, as the illness gains credibility, a new name could be brought in all together. I think that's probably a better idea to happen one day - when this illness is finally taken seriously by all, to completely disassociate it from CFS, ME, CFIDS, PVFS and all that. Hopefully one day (and this could very well be 50 to 100 years off), a new name, possibly one using that of a pioneering researcher, could be brought in, such as "Ramsay's Disease" or the like. Until such a time, though, patient groups need to push for the widespread use of the Canadian or Nightingale criteria and the phasing out of Fukuda and Oxford (and it's derivatives). That is our first step, before any of this name change business. Unless ME/CFS is used in the context of the Canadian guidelines, it's just throwing another very large spanner into the works.
I would also like to note that myself and other Australian (and UK) ME sufferers have taken a little offense at Rich Carson's throwaway comment regarding our views on the diagnostic criteria. It is not JUST in the U.S. that patients are damaged by the term CFS every day - it's all over. It is also worthy to note that we do not have strict ME guidelines in use in this country. Australia uses a guideline that is exactly the same as Fukuda used by the CDC in America, and the UK uses a definition even worse than that. We are in the same boat as the U.S. The name hurts us just as much.
But we also recognize that adding ME to CFS is just going to cause more problems for us, unless the diagnostic criteria is changed as well. If this goes ahead, it won't be long until you hear full-time working, socially active and perfectly healthy people saying "Oh you have ME. I have that too, but I get on with it!"
PLEASE, we urge ProHealth to take a look at the bigger picture. - Collette
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