ME versus CFS Name Controversy

[Michelle S.]

First, I do hope I am posting this in the correct category.

I was looking up research on CFS today and came across quite a bit about there being controversy over the use of the names ME, CFS and ME/CFS. Apparently there are some that say ME and CFS are two different things. ME is an actual illness whereas CFS is more or less a garbage bin for those of us who have ailments which the medical community cannot diagnose nor treat.

They are urging those who were diagnosed with CFS to be more aggressive in their diagnosis, care and treatment as they believe CFS is always a misdiagnosis. They believe there is a serious illness(es) which has not been found which are lumped together and is also used to get insurance companies out of a bind.

Is anyone aware of this and what are your thoughts?

 

[Not dead yet!]

I think it's equally difficult to get a doctor to diagnose you as ME (separately) as it is to be diagnosed CFS (only, and not Fibro or Arthritis), and the one really useful diagnosis would be enterovirus, but nobody will even admit that exists anymore, except a few specialists in ME/CFS. The connection between ME and CFS is that patients discovered that ME had been renamed and relabeled a mental illness or the result of sedentary living, instead of the cause of sedentary living (because of lack of ability).

There are treatments for myalgias, and treatments for encephalitis, so the only reason to relabel the illness is because you want to market different drugs to the patients. That different drug is antidepressants. My pain center doc also warned me that they're now trying to get antipsychotics into the pain market. Part of what's driving the push toward making a stink about opiates is not so much to save young kids who get addicted to street drugs and never recover. It's because the pain market is bigger than the psych market. And those new psych drugs which are supposed to be better at not making people with psychosis into zombies? Well, so that means they're safe for other "patient populations" right?

I don't have a high regard for drug companies. I bet you guessed. Not just because of my illness, but because of my mother's illness, my family's illnesses. Each time, I learn more about he sleazy tactics. Like the "oh noooo! you have high blood pressure" scam.

Anyway people on websites like to argue about anything. The point is, the patients haven't been helped in decades, and this is verging on criminal neglect, in my opinion. It might also be a crime to market inappropriate drugs to people and groups who haven't been shown to benefit from them. That's kind of like... drug pushing in the streets....

 

[Michelle S.]

I think it's equally difficult to get a doctor to diagnose you as ME (separately) as it is to be diagnosed CFS (only, and not Fibro or Arthritis), and the one really useful diagnosis would be enterovirus, but nobody will even admit that exists anymore, except a few specialists in ME/CFS. The connection between ME and CFS is that patients discovered that ME had been renamed and relabeled a mental illness or the result of sedentary living, instead of the cause of sedentary living (because of lack of ability).

There are treatments for myalgias, and treatments for encephalitis, so the only reason to relabel the illness is because you want to market different drugs to the patients. That different drug is antidepressants. My pain center doc also warned me that they're now trying to get antipsychotics into the pain market. Part of what's driving the push toward making a stink about opiates is not so much to save young kids who get addicted to street drugs and never recover. It's because the pain market is bigger than the psych market. And those new psych drugs which are supposed to be better at not making people with psychosis into zombies? Well, so that means they're safe for other "patient populations" right?

I don't have a high regard for drug companies. I bet you guessed. Not just because of my illness, but because of my mother's illness, my family's illnesses. Each time, I learn more about he sleazy tactics. Like the "oh noooo! you have high blood pressure" scam.

Anyway people on websites like to argue about anything. The point is, the patients haven't been helped in decades, and this is verging on criminal neglect, in my opinion. It might also be a crime to market inappropriate drugs to people and groups who haven't been shown to benefit from them. That's kind of like... drug pushing in the streets....

Thank you so much! I was hoping to get input from those outside that site. That was the first I had heard about it and I was curious as to what others thought. As for big pharm, I agree with you!!!! They need to be done away with or reigned in. They do not care about people, only the profit and the government is in their back pocket.

 

[Eset Isadore]

Though long, perhaps the proposed “Systemic Exertional Intolerance Disease” name is more effective. I use this with ME personally. That is in part because I have a relatively severe case, and the term “CFS” feels trivializing to me.

 

[Michelle S.]

Though long, perhaps the proposed “Systemic Exertional Intolerance Disease” name is more effective. I use this with ME personally. That is in part because I have a relatively severe case, and the term “CFS” feels trivializing to me.

Exactly! It is trivializing. No one really seems to take the term CFS seriously and if one more person says "oh, you're tired" to me I think I might slap them (if I had the strength).

 

[Abrin]

Exactly! It is trivializing. No one really seems to take the term CFS seriously and if one more person says "oh, you're tired" to me I think I might slap them (if I had the strength).

The name is definitely a problem.....I am at the point that I refuse to wait for science to change the name and just tell people I have a Mitochondrial Dysfunction instead. When people ask me what that is, I tell them it is like having cells that have aged before their time. Since the flower of my youth has now gone and the majority of people who are around me are middle-aged and their body is starting to break down it is a subject they can relate to and so they tend to be less judgemental about it.