American medics

[grungema3]

Living in London, England , I was sure that some brilliant US. mind would have all this stuff researched and sorted by now. But it sounds even worse there than it is here! Same emotional problems and same disbelief. The World Health Organisation verify that ME/CFS is a definite physical neurological condition. My specialist, Prof . Findley, believes it's all to do with the hypothalamus. This is the "policeman" of the body and acts on emotions, the sleep centre of the brain and muscles, amongst hundreds of other bits. He says that's why many of us become depressed, confused, short-term forgetful and can't sleep even though we're exhausted. Sounds pretty sensible. All he has to do now is find out the cause and  sort out a cure! Loads of people are working on it but I think it's the depression bit which is the problem. The stigma still remains of anything "mental" - which is so sad. "Pull yourself together" say disbelievers- fine, if only we had the strength! So, come on U.S.A., what's the hold up? We're not asking to go to the moon, which you CAN do, just to get well, for which, it seems, there is no technology.  

[Shanannagins]

I absolutly agree.  I think that they probably do have cures for alot of illness but its not good for their pocket book.  Just like GM bought the patent for that electric car, put a few in the market, then recalled them all for no reason and refuses to develop the technology further.  I love this country and I have no real problem with capitalism but why can't we function under a humanitarian capitalist system.  Maybe thats just too utopian an idea and putting way too much faith in people with power and money but I think its possible.  I just wish people in this country would pull their heads out of you-no-where and vote responsibly with people in mind and not just money or religion.  Trust me I cannot wait to vote this November!

[grungema3]

Thanks for your reply. Do you know I tell anyone who will listen that I bet they really have a cure for everything. This might be an urban myth but I have heard that someone invented an everlasting match ( is that what you call it in us?) you light ciggies, fires with them. The match companies paid millions for the patent and never used it otherwise they would all have had to close down. I think all these researchers play cards or computer games all day. Either that or no-one has told them that they already have the answer and the poor souls are working their socks off for nothing. You're right, it's all to do with finance, corporations and closed mouths.
Hope you feel better very soon .

[Shanannagins]

It is very sad.  Now that I finally have my diagnosis (just got it on the 11th) I was feeling great to at least have a validation.  But the more I think about it, though I am happy to know, I am so disheartened that not more people seem to care to want to help us.  I am getting ready to start pharmacy school and in about 5 years I should be done.  I will make this promise to all of you that once I have my degree I will do whatever is in my power to try to help our causes along.  There need to be more advocates on the inside of this system helping the suffering.  I realize that cancer and HIV are horrible things but so is CFS and FMS.  We deserve as much care and concern.  It is because these syndromes are not often fatal that it is almost worse...we live on and on with this pain.  It can't be cut out or radiated away.  And for those unlucky cancer patients who do die from their illness, at least in most cases they did not suffer for years with the pain... not to down play their suffering.  I believe that it is all of us who must band together and get the medical community to listen and do something about it.
Ok, I'll get off my soapbox now.
I am glad you are feeling somewhat better PG!

[PlateletGal]

"There is also a ton of money to be made in the medical community with the not having a "cure". "

Boy did you hit the nail on its head and especially with these chronic illnesses. There is more money for these pharmaceutical companies to treat symptoms rather than treat the CAUSE and the DISEASE.

[Shanannagins]

There is a reason they call it practising medicine.  It is not exact.  And unfortunatly even though alot of people have these syndromes medicine seems to be much more concerned about keeping hair on a persons head and (pardon my language) a stiffy in their pants to worry about people who are actually suffering.  Also I think it has alot to do with the fact that no one actually dies from many, though not all, of these syndromes so there really is no sense of urgency.  There is also a ton of money to be made in the medical community with the not having a "cure".  It takes years for most people to be diagnosed and during those years a ton of money is being spent on finding the "problem" and throwing different "solutions" at it.  I think in the end it all comes down to not many people care and there is too much money in not finding out why.

[scaredmom330]

you are right there is no technology... they just recognize fibro as a disease late last year..before you were just imaging the pain.. it is all in your head...get over it...so yeah ..we as in the USA are way behind...