consider offense

[Tulip]

We have ME/CFS societies in each state and the Alison Hunter Memorial Foundation, unfortunately they do a pretty crap job at raising awareness!. The Alison Hunter Memorial Foundation mostly exists for biomedical research support and advocacy though.

 

[WillowJ]

I really think all ME societies and patients need to put out AIDS like scare campaigns on this disease. People need to know what it is, that it's very serious, mostly lifelong and it is killing thousands and thousands of us. And it can happen to anyone. I'm sick of the sugar coated campaigns that come out every year, no one gives a stuff because they think it's "just" chronic fatigue.

I don't think I can handle anymore abuse or medical neglect from doctors, after 19yrs of being sick i'm at the end of my tether. Things must change.

I'm in the same boat! and I even have a couple of good doctors (not ME doctors). but if I need anything not from them, I get nothing but medical neglect, medical abuse, and psychological abuse

 

[WillowJ]

I agree that we need to go on the offense and find some journalists who will support our cause.

I don't understand why we think pharmaceutical companies are potential bad guys here (unless you think some of them are complicit in some conspiracy scheme). If WPI is right, they get to trade no treatment, minimal treatment, perhaps old-hat boring generic depression meds and NSAIDS for us... for more expensive ARV's for us. Injection twice a week? Even if it's more of a myasthenia gravis/multiple sclerosis model, that would be multiple expensive medications.

Pharmaceutical companies have every reason to go along with the biomedical model in general and the retroviral model in particular.

Far more, we should fear the government tool media. Unfortunately, that's most of it. The media inanely repeats CDC press releases, etc. without bothering to check the accuracy or how it jives with other research (is CDC actually doing a good job, or does it fail?). Media in general has no sense of history, no sense of economics... just runs with the current story. And blindly trusts certain institutions, especially the health authorities.

 

[caledonia]

I think you all missed my point. What I meant was we should stop saying the full name which has the word "fatigue" in it, and just say the initials. You can say M.E. or C.F.S. or M.E./C.F.S. or whatever you want, which does not include the trivializing word "fatigue". If you take out "fatigue", then they're no longer tempted to shorten it to "chronic fatigue". The initials roll off the tongue much easier anyway.

I was suggesting "M.E./C.F.S." because the NIH (one of the two of the US govt. medical agencies) has already started to use it. We just need the CDC to start using it too, for it to become the new name; because like Willow said, most reporters, doctors, etc. blindly follow what the CDC says, right or wrong.

But anyway, hopefully, someday this argument will go away due to research, and the name will either revert back to Myalgic Encephalomyelitis or it will acquire a totally new name, perhaps based on a biomarker, like in the case of MS. I don't know which one the CDC would be more likely to accept though. They would have to be able to reproduce the research themselves for it to be "real" to them.

 

[markmc20001]

Far more, we should fear the government tool media. Unfortunately, that's most of it. The media inanely repeats CDC press releases, etc. without bothering to check the accuracy or how it jives with other research (is CDC actually doing a good job, or does it fail?). Media in general has no sense of history, no sense of economics... just runs with the current story. And blindly trusts certain institutions, especially the health authorities.

Glad you agree about the offense. As far as the media repeating what the CDC without checking. My gut instinct tells me it is more of some public relations activity that gets the message straight about what the CDC wants.

I think it is no accident we have been in this media meat grinder situation for decades with government etc. Part of it is due to the psychobabble, and another effort is the media and journal spin that goes hand in hand with the psychobabble. Barely cover the positive studies, blast the negative studies over and over. It all stage managed.

to be continued...

 

[markmc20001]

I don't understand why we think pharmaceutical companies are potential bad guys here (unless you think some of them are complicit in some conspiracy scheme). If WPI is right, they get to trade no treatment, minimal treatment, perhaps old-hat boring generic depression meds and NSAIDS for us... for more expensive ARV's for us. Injection twice a week? Even if it's more of a myasthenia gravis/multiple sclerosis model, that would be multiple expensive medications.

Pharmaceutical companies have every reason to go along with the biomedical model in general and the retroviral model in particular.

The only way the big picture makes sense is if I consider it a conspiracy. Once I consider the conspiracy agenda, the whole puzzle fits together.

It explains why the drug companies don't admit the true cause of all these illnesses caused by a retrovirus. Explains why they haven't done bio-medical research for 25 years. It explains why the CDC never took CFS seriously way back when the outbreaks started. It explains why they won't want to develope anti-retrovirals for neuro-immune disease. Sure it explains more, just can't think of any at the moment.

Big Pharma is the only player with enough power and money to make it happen besides government. I don't think most of government generally is bad, it is just the Big corporations that manipulate them. Haven't got all that figured out yet though. I worry about government too with the agenda some politicians are pushing.