Hi Medfeb RE
1. CD-10 was approved by the International Conference for the Tenth Revision of the International Classification of Diseases in 1989 and adopted by the 43rd World Health Assembly in 1990. In ICD-10 WHO created code G93.3, Postviral fatigue syndrome and indexed chronic fatigue syndrome to this code. In ICD-10-CM chronic fatigue syndrome NOS (that is not specified as being due to a past viral infection) was added to ICD-10-CM in Chapter 18 at R53.82, Chronic fatigue, unspecified. ICD-10-CM retained code G93.3 to allow the differentiation of cases of fatigue syndrome where the physician has determined the cause as being due to a past viral infection from cases where the physician has not established a post viral link. It should be noted that including chronic fatigue syndrome NOS at code G93.3 would make it difficult to disaggregate cases that are now distinguishable through the use of two separate codes.
As you can see, the NCHS intent regarding ICD-10-CM is to use the code at G93.3 for viral causes and CFS NOS under the R codes where the physician has not been able to establish a viral link.
Thank you for your public admission that the coalition proposal has been being sold to the public on the basis of information that is completely false and misleading. The coalition proposal has been sold on the basis that the R53.82 code is for psychiatric illnesses and you have just shown that the NCHS does not and never has had any intention for the R53.82 code to be viewed as psychiatric and that you and therefore the coalition are well aware of these Facts!!!!
When I said that before the coalition got involved is that they were being written to fix this problem once and for all. Maybe it would be more correct to say that they had been written in a way that would fix this problem once and for all, and separate the neurological patients and therefore more likely to have ME, form all the none neurological patients, I am well aware that the NCHS does not have a complete understanding of the problem, but the original proposed code changes, would have fixed this problem once and for all.
I suggest that it might be a really good idea if both the NCHS and the Coalition actually had some understanding of what ME and CFS are, and what the medical literature actually says. The idea that patients can be separated on the basis of a past viral infection is preposterous! There is no scientific evidence that 100% proves that the ongoing symptoms found in CFS and ME patients is caused by a past viral infection, sure theirs hundreds of theories, but none have been proven. The fact that a patient might have a acute onset does not prove its viral, it could be viral, bacteria, fungal, patristic, environmental poisoning the list goes on and on, even if a patient has been tested and found to have a known virus in the beginning, there is no evidence whatsoever that this initial viral infection is the cause of either CFS or ME. And PVFS is a theory that has never been scientifically proven, This is why the ICC states that ME and CFS patients are to be separated based on the symptoms they have, NOT on the basis of if they have a past viral infection or not.
RE The problem with that is that both the ME-ICC and the Canadian Consensus Criteria includes both viral and bacterial causes.
The ME-ICC and the Canadian Consensus Criteria do NOT include both viral and bacterial causes, they say that there is some evidence that there MIGHT possibly be Viral and bacterial causes, but that this evidence is far from been proven in any way shape or form, there is nothing in either document that says that it is in any way possible to separate patients on the basis of a viral or bacterial cause!!!
So this statement of yours Separating them out as proposed is not correct. It will place patients who meet the ME-ICC criteria but can't show a viral trigger into the R class under Chronic Fatigue.
Is pure fantasy and completely incorrect. The ICC separates ME patients from CFS patients based on symptoms NOT viral and bacterial causes!!!!!
Once again scientific documents and medical facts are being misrepresented to try and prove a point that the science and the experts in the field completely disagree with!! And do not support the coalition proposal in anyway.
The original proposed changes to the ICD more by luck then being based on solid medical science, however would split the patient group into two groups those with neurological symptoms at G.93.3 and those with out at R53.82, which allows the patients with neurological symptoms to get a diagnosis that actually resembles their illness, and have treatment and testing appropriate to a neurological illness, and allows them to be researched as a separate group.
RE But in the U.S., patients suffering from a serious debilitating neurological disease are given a label of CFS, not ME. We all want that to change.
Well everyone wants to change that and I would imagine that the majority of people can see that it is wrong for patients suffering from a serious debilitating neurological disease should be given a CFS label.
And the original proposed changes to the ICD before the coalition, who obviously do not have a correct understanding of what the science says, or even what the ICC says started meddling. ME would have its own separate neurological code G.93.3 in the States for the first time. And the patients with a serious debilitating neurological disease would be separated from the none neurological CFS patients who would be in a completely separate code R53.82. Problem solved once and for all.
The coalition proposal completely ruins this, it turns the diagnosis of every single person in the US diagnosed with CFS into a neurological one. A vast number of people with a CFS diagnosis dont have a neurological illness, so they all get a completely wrong ICD code. (In fact CFS by definition is not a neurological illness it a fatigue syndrome, ME by definition is a neurological illness) so they all get a completely wrong ICD code. The coalition proposal means that everyone has the same illness, no matter what their symptoms. All it does it takes the colossal mess that has existed for decades, of ME patients being mixed up with a vast number of other misdiagnosed people with different conditions in the CFS group and swaps the ICD code for the whole lot, making it impossible to separate the Neurological patients from the rest, which will mean that the neurological patients will continue to get lost in the mess and will never receive the help they need.
The coalition proposal also opens the door for every single patient in the US to be reclassified as having Complex Somatic Syndrome Disorder, because having the non neurological patient with the same ICD code as the neurological ones, means they can do exactly the same as the Wessely School have done in the UK, study some of the psychiatric patients in the CFS group, and declare it is a somatic illness, because the Coalition proposal will give CFS and ME patients the same ICD code, so therefore makes them the same illness, they will then say same code same illness so were going to reclassify every one as CSSD. And it will all be the coalitions fault!!
RE But advocating to put CFS, the only diagnosis that patients are given and have gotten disability for underneath 'Chronic Fatigue' is dangerous to those patients who are very sick.
Agreed it is, but this once again is misrepresenting the facts, the original changes to the ICD would have allowed all the very sick neurological patients to be separated from the rest and the problem would be solved. Moving everyone with a CFS diagnosis to the G.93.3 code as you propose totally destroys this, Having everyone no matter what their symptoms in the same code will allow psychiatrist to look at them and say that CFS and ME are not neurological illnesses, and everyone will be in danger of being reclassified as somatically ill, and the G.93.3 CFS ICD code will be viewed as a mistake by the medical community!
The Coalition proposals destroys everything that they claim that they are trying to achieve and will be disastrous for Neurological patients and research.
RE Pointing CFS to G93.3 PostViral Fatigue Syndrome is not going to wipe out ME. ME will still be there and doctors can still use it if they want AND if they understand the disease.
Again pure fantasy if CFS and ME have the same code it means there the same illness, US doctors have been using CFS for decades, as soon as they see ME has the same code as CFS, their just going to keep using CFS because its what they Know!!!! People are creatures of habit!! And saying that doctors can still use it if they want and understand it, well that a great scientific argument isnt it, they wont want to because they are used to CFS, and they dont understand it, and it will become impossible to educate them that ME is different to CFS if they have identical ICD codes. So what your augment is, is that there might be the occasional doctor that will use ME but the rest will use CFS, so your aim is to have one disease with two completely different names and definitions!
If the original proposed ICD changes are accepted and the coalition one rejected, Doctors will have no choice but to use ME for all the neurological patients, problem solved.
Another point that the coalition has completely overlooked is if they succeed in making CFS a neurological diagnosis, what pray tell do they think is going to happen to all the hundreds of thousands of CFS patients who dont have a neurological illness? Doctors by law have to give an ICD code that matches the illness, so all these patients cant have a CFS diagnosis, which leaves the doctor with no choice but to give them a psychiatric diagnosis, because the coalition will have taken away the option of having them in the R code section. Im sure these patients are going to be extremely annoyed with the coalition once they find out what they have done to them.
Going off at a slight tangent Medfeb I believe youre with Pandora? Could you please explain to me why it is that all the US patient orgs completely ignore the issue of misdiagnosis? That is caused by the woefully incomplete instructions found in the CFS definitions used in the States. I would recommend scrolling down to the bottom of this page and reading the article The myth of Chronic Fatigue Syndrome by Dr Shirwan a Mirza
http://www.bmj.com/content/334/7605/1221?tab=responses In it you will find detailed instructions on all the common disease that cause the same symptoms as CFS that are not in the US definitions and how to test for them. Then print it out, and next time you lot are in contact with The CFSAC or NHCS, start demanding that they make these test mandatory for all CFS patients, so that everybody has to have these conditions ruled out before they can have a CFS diagnosis, its not a complete list of every disease that gets misdiagnosed as CFS but its the most common ones and a good start. It would give tens of thousands of miss diagnosed patients their lives back, and stop them being added to the mixed cohorts being research!
