Hi firestorm, yep it is kind of staggering, although we dont have exact figures, estimates of how many people have CFS run as high as 17 million even at 40% misdiagnosed thats 6.8 million misdiagnosed people.
From what Im seeing in the types of diseases being missed, it is largely a case of doctors not doing their jobs properly, almost all of the types of illnesses that they are finding are the type of ones that GPs are trained to pick up and diagnose at med school, or at least refer to a specialist for a more intensive investigation. So a lot of the blame lies with them.
There are diseases listed in these reports that have been misdiagnosed as CFS that are mentioned in the NICE guidelines to be ruled out, so doctors are obviously not following the NICE guidelines. And they need to be held accountable for it.
The NICE guidelines are far from complete, and miss out a lot of conditions that should be included like vitamin D deficiency etc, as Dr Mirza points out. What is needed is a complete list of fatigue causing illnesses with instructions on what tests need doing to rule out ever disease. That doctors have to do before they can hand out a CFS diagnosis, it is supposed to be a disease of exclusion after all.
If that was done it would solve the problem.
What is happening now is that doctors are rushing through patients without testing them properly, and CFS is being used as a dumping ground diagnosis for all the patients that havent been tested properly by doctors who are either lazy, incompetent or over worked. Its just too easy to give them a CFS diagnosis.
But this has to change, there has to be strict guidelines for doctors on ruling out every fatigue causing illness before anyone gets a CFS diagnosis, it needs to be made law and doctors who dont follow it get in serious trouble.
I dont think anything will really be gained by changing the symptoms in the NICE criteria, doctors will still not follow the instructions on what diseases to rule out, unless they start being held accountable and severely punished for not following them.
Even if the UK changed to the ICC it still wouldnt make much of a change, the symptoms in the ICC can be caused by other illnesses and if these arent ruled out, there will still be a lot of misdiagnosed. And what will happen to the patients that dont fit the ICC, but still fit NICE are they to still be left with a CFS diagnosis and still not going to be investigated properly to see if they have the right diagnosis.
Personally I dont think CFS is a real disease and shouldnt be used as a diagnosis for anyone. But if CFS is scrapped, and just ME as defined by the ICC is used. What happens to the people who dont fit the ICC, Id imagine they will just be told their depressed, or get an, I dont know diagnosis, and still be left suffering from diseases, which if their doctors did their jobs properly in a lot of cases could be found and cured.
As I see it, this whole misdiagnosis problem is caused by doctors not doing their jobs properly and not being held accountable for their actions. If as seems to be the case all over the world, GPs are not capable of doing what they were trained to do. Then they will have to be given proper instructions on what they have to do, and they will have to be watched to make sure they do it. This problem shouldnt be happening, but it has for decades, and it would not be hard to fix, its just a case of basic medicine being done badly!!!
All these people shouldnt be being condemned to suffer needlessly for the rest of their lives, and there isnt a shit show of finding the cause of ME, if all these misdiagnosed people keep getting put into the ME research cohorts.
To get together a complete list of illnesses that have to be ruled out and what tests need doing, could be done in a couple of months and sent to every doctor with instructions that they have to rule out these diseases before giving a CFS diagnosis, this would solve the entire problem.
No doubt the powers that be would say that it is too expensive to do this, but it is a wrong view, it costs far more to have all these people on sickness benefits and not contributing tax then it would to properly diagnose them. Dr Hyde says even the most extensive investigations he does on patients cost no more than $10,000, thats less than one years benefit. So governments are not only leaving people to suffer with the wrong diagnosis, but are also paying out billions of dollars in benefits to people who should never have been on them in the first place.
The solution is simple make sure that doctors do basic medicine correctly and give their patients the correct diagnosis, like their paid to do. they are thaught how to do this in med school. How we get the powers that be to implement this, I dont know.
All the best
From what Im seeing in the types of diseases being missed, it is largely a case of doctors not doing their jobs properly, almost all of the types of illnesses that they are finding are the type of ones that GPs are trained to pick up and diagnose at med school, or at least refer to a specialist for a more intensive investigation. So a lot of the blame lies with them.
There are diseases listed in these reports that have been misdiagnosed as CFS that are mentioned in the NICE guidelines to be ruled out, so doctors are obviously not following the NICE guidelines. And they need to be held accountable for it.
The NICE guidelines are far from complete, and miss out a lot of conditions that should be included like vitamin D deficiency etc, as Dr Mirza points out. What is needed is a complete list of fatigue causing illnesses with instructions on what tests need doing to rule out ever disease. That doctors have to do before they can hand out a CFS diagnosis, it is supposed to be a disease of exclusion after all.
If that was done it would solve the problem.
What is happening now is that doctors are rushing through patients without testing them properly, and CFS is being used as a dumping ground diagnosis for all the patients that havent been tested properly by doctors who are either lazy, incompetent or over worked. Its just too easy to give them a CFS diagnosis.
But this has to change, there has to be strict guidelines for doctors on ruling out every fatigue causing illness before anyone gets a CFS diagnosis, it needs to be made law and doctors who dont follow it get in serious trouble.
I dont think anything will really be gained by changing the symptoms in the NICE criteria, doctors will still not follow the instructions on what diseases to rule out, unless they start being held accountable and severely punished for not following them.
Even if the UK changed to the ICC it still wouldnt make much of a change, the symptoms in the ICC can be caused by other illnesses and if these arent ruled out, there will still be a lot of misdiagnosed. And what will happen to the patients that dont fit the ICC, but still fit NICE are they to still be left with a CFS diagnosis and still not going to be investigated properly to see if they have the right diagnosis.
Personally I dont think CFS is a real disease and shouldnt be used as a diagnosis for anyone. But if CFS is scrapped, and just ME as defined by the ICC is used. What happens to the people who dont fit the ICC, Id imagine they will just be told their depressed, or get an, I dont know diagnosis, and still be left suffering from diseases, which if their doctors did their jobs properly in a lot of cases could be found and cured.
As I see it, this whole misdiagnosis problem is caused by doctors not doing their jobs properly and not being held accountable for their actions. If as seems to be the case all over the world, GPs are not capable of doing what they were trained to do. Then they will have to be given proper instructions on what they have to do, and they will have to be watched to make sure they do it. This problem shouldnt be happening, but it has for decades, and it would not be hard to fix, its just a case of basic medicine being done badly!!!
All these people shouldnt be being condemned to suffer needlessly for the rest of their lives, and there isnt a shit show of finding the cause of ME, if all these misdiagnosed people keep getting put into the ME research cohorts.
To get together a complete list of illnesses that have to be ruled out and what tests need doing, could be done in a couple of months and sent to every doctor with instructions that they have to rule out these diseases before giving a CFS diagnosis, this would solve the entire problem.
No doubt the powers that be would say that it is too expensive to do this, but it is a wrong view, it costs far more to have all these people on sickness benefits and not contributing tax then it would to properly diagnose them. Dr Hyde says even the most extensive investigations he does on patients cost no more than $10,000, thats less than one years benefit. So governments are not only leaving people to suffer with the wrong diagnosis, but are also paying out billions of dollars in benefits to people who should never have been on them in the first place.
The solution is simple make sure that doctors do basic medicine correctly and give their patients the correct diagnosis, like their paid to do. they are thaught how to do this in med school. How we get the powers that be to implement this, I dont know.
All the best