Hi Valentijn, RE It makes me sick to my stomach when people on either side are accused of personally harming every single person in the world that has ME by refusing to switch around to the other side, and I have trouble respecting people that present their opinions in such a hurtful manner.
Not sure if that was directed at me, but it is certainly not my position, Im saying that the continual promotion of the idea that there is a disease called CFS is hurting every single person involved, not just the people with ME.
CFS was created in response to the Tahoe epidemic, the CDCs own writing admits that CFS bears no resemblance to the disease at Tahoe they claim that it was defining, therefore CFS defines nothing, it is not a disease, the later CFS definitions Fukuda and Reeves, COMPLETLY changed the symptoms of CFS, once again bearing absolutely no resemblance to ME, these US definition were co written by the Wessely school, these definitions also do not define any disease, they are just a set of very common symptoms that are found in a vast number of diseases. Anyone who takes the time to read the background information on these CFS criteria, can easily see that CFS is not a disease, it was originally invented to cover up what happened at Tahoe and other locations in the states, the reason why the CDC has never shown any inclination to properly investigate CFS is because they know its a waste of money, because they know they invented a bogus disease, which is why they have stolen vast amounts of money allocated to CFS in the past and used it on other projects.
The invention of CFS has given overworked, under resourced and often poorly trained doctors an easy out, were they can dump everyone that they cant work out whats wrong with them quickly, and leave all these people to suffer for the rest of their lives. Sure this included ME patients, but it also includes a vast number of other misdiagnosed patients, the belief that is often said that these other people are all depressed is a fallacy, a lot of these people have very serious and often fatal diseases, such as brain tumours, heart defects, MS, Lupus, Addisons, Hemochromatosis etc, etc, and people are suffering and dying unnecessarily. Sure these people are then being included in research cohorts and stuffing up the research on ME, but personally I find the way that the misdiagnosed people are not even recognised by a lot of CFS groups, more than a little disturbing, I also dislike the way that depression is often mentioned as if its something minor, depression has a far higher death rate then ME, it has its own definition and treatment. As do all the other illnesses misdiagnosed as CFS.
Im not arguing for CFS to have its name changed, Im saying that it should be thrown in the garbage along with all the ludicrous CFS definitions. CFS isnt a disease, the definitions dont define anything, CFS as Max rightly points out stands for Criminal Fake Science.
Doctors would then be forced to go back to the correct medical practices that they used before 1988 and CFSs invention, when a patient presenting with chronic fatigue was seen as a patient who had one of many very serious diseases and was intensively investigated to find out which one it was.
And ME could go back to being its own separate real disease and be research properly without the mixed cohorts.
This way everyone wins!!! If people keep promoting that CFS is a real disease and the same as ME no one wins and everyone will be sick till the day they die.
I sure there will be people who say they cant see that ever happening, well its not going to if people dont try, changing the name CFS to ME will achieve absolutely nothing, all it does is change the name of a vast group of people with different illnesses and continues to treat them as if they all have the same disease, moving CFS to anywhere in the ICD codes, wont help anyone, because its not a disease and should never of been in the ICD codes in the first place, and giving CFS the same code as ME will just continue the confusion between the two.
You say I also don't see any indication that ME and CFS are separate diseases.
The ICC says they are separate diseases that should have separate names and separate definitions.
RE The term "ME" doesn't officially exist in the US, and it's highly practical to use "CFS" on a website aimed at people with ME/CFS.
The term ME does exist in the US, the CDC website says it is a different disease to CFS, it has always been in the US ICD under the US name for ME epidemic neuromyasthenia, but the orgs and websites that claim to be representing ME patients have done such an awful job with their research that they have failed to tell the US public about this. ME will be in the new ICD with its own separate code unless the coalition stuffs this up. It is the responsibility of the orgs and websites to provide correct information and educate the patients about the scientific truth, not to keep promoting false information that CFS is ME and everyone has the same illness, there is now no reputable medical source that backs up the use of the term ME/CFS the principle writers of the CCC are the principle writers of the ICC and they have changed their mind and are now saying that ME and CFS are different. Making ME/CFS a redundant term.
I hope this clears up my position on this, I want everybody no matter what is wrong with them to have a correct diagnosis, correct treatment and for research to be done only on people who all have the same illness, not the stupid mixed cohorts weve had for decades.
It was the invention of the fictitious disease CFS that created this problem in the first place, and only by completely getting rid of CFS will the problem be solved, unfortunately almost every org and website, is promoting the existence of CFS in complete agreement with the CDC, and the Wessely school, which in my view makes them just as much a part of the problem as the CDC and the Wessely school.
All the best
