This disease s*cks

I am sorry to vent my frustrations but have thought a lot about this the last couple of days and am just disheartened by all of it. This has got to be the stupidest illness there is.....one characterized not by what it is but by what it is not. I was with Klimas last week and we went through five or six different scenarios of what this could be:

Immune dysfunction
Dysregulated cytokines due to HPA issues
Infection in brain
Infection in gut
Smypathetic/parasympatheic nevous system imbalance
Genetic dysfunction
Retrovirus
Mitochodrial dysfunction

This is after 30 years of research and Klimas is one of the premier immunologiests n the world. Even some of our other best doctors (KDM) have no idea how certain new medications are going to react. I've read a lot of the recent positing on GcMac and it sounds like another guinea pig drug for us, with some improvement and a lot of symptoms and inflammatory markers worsening.

We hold onto every reasearch article or new supplement with hope that this may be the one. We listen to stories from a friend of a friend who tried something and felt better. For myself, I enjoy reading this site and keeping up to date with all the potential possibilities that could lead to new drugs for us in ten years or so after twenty more double blinded tests. Don't get me wrong, I think sites like PR are great and let us share information with each other.....but it is the doctors that ought to be figuring things out and I think they are failing miserably.

The one positive for me is the support among the community to monetarily support current research protocols. The last thing I was is for my children (or any children) to inhereit this illness without significant ways of helping mitigate the symptoms (or even potentially having a cure) and I am thankful that we have many people on the site to advocate.

We are like the Vietnam vets who the US government has forgotten about. The Japanese government, with approximately 1/3 rd the people of the United States, spends more on CFS/ME than the USA.

My feeling at this point is that we can just hope to go into a remission because the puppet master that's pulling the strings in our body gets bored for a while.

Sorry for the negativity and rant folks but after 15 years with this illness, I'll be excited when someone actually tells me what is wrong with me (not the 20 symptoms and test results that suggest things are wrong with me -I already know that) and a real treatment plan where I am not the guinea pig.

Here's too all of getting some answers sooner rather than later,
Gregg

Comments

Hi, the world would rather lose hundreds of billions every year not treating us, than spend a few hundred million finding a long term solution. This is global idiocy, and every government has some blame. I am encouraged by the Japanese government though. They get what this ignorance is costing the world, and have an integrated research program. Bye, Alex
 
I read a post on another site abt a pt visit to Klimas....i felt the same way after reading that post...here supposedly is one of the world renowned dr's in the ME world prescribing the same old thing: immonvir, fludrocortisone, coq10...there was not one new treatment....come on! the most severely sick have tried these things and they do not work for us....when in god's name will there be some new treatments that actually really work.


gcmaf sounds like a giant, expensive crapshoot at this point.

it is ridiculous.

i rant by your side : )
 
Ranting is good and helpful to get your feelings out.
We are all in the same boat.
Somehow I feel that the wind is starting to push us in the right direction.
Many illnesses don't have a remedy. At best, the can treat the symptoms.
What I have been feeling lately is a movement of recognition that this is a real illness. This acknowledgement is crucial for studies to be done to find the cause and then real treatment for us,
 
Never be sorry to vent. You have a good doctor, hang in there, there is hope. Take care. ~Sleepy
 
I know people who are going to Klimas and who have gone to Cheyney, they are still sleeping 14 hours a day. I am not trying to sound negative, but it's a fact. They can diagnose more, you can pay a lot of money and have some results that you might not have from a CFS doc locally, but the question still remains....what next? What can be done? Even the fact that the name is being changed isn't that big a deal. Now, people are going to ask, what is that...ME? Sounds better, that's it.

I won't be happy until they have tried and true treatments where at least 80% of people are getting better and staying better. Until then, it's going to keep being vitamins, kefir, meds for pain and stuff that helps us to maybe have a spark in us...here and there.

Thank you for stating this. You are not the only one who is clearly feeling these feelings. You just have the nerve to voice it.
 
Wow, Nielk,
"Many illnesses don't have a remedy. At best, the can treat the symptoms."-- this struck me. For a moment I'd forgotten there are so very many disease in this world that DON'T get better, that are clearly degenerative. I think this is exactly right thought: RECOGNITION. We deserve recognition that we in fact have one of those terrible diseases, which is utterly debilitating...
The difference between MS and ME for example, in my mind is, (among other obvious physical things)-- with MS everyone knows how "serious" that is. I am just personally realizing how serious ME is--not because I haven't had terrible symptoms--i have-- but because those around me don't know much about it. I guess for better or worse, with more recognition amongst my family/friends, I think I see more fear and maybe--pity?--in their eyes. I'm not sure I like this aspect! If i had another disease with a "household name" like MS or cancer--recognized as being very serious-- I wonder if I'd have had those caring/fearful/pinch-of-pity looks years ago. Interesting. somehow it is remarkable-- I think I am starting to compare this with other diseases. That's just an interesting insight for me somehow. Sorry if a bit off topic! At any rate, Ranting is a wonderful thing-- I fully FULLY support as well! A friend I described this too said" that sounds like the worst possible disease I can imagine--never getting refreshing sleep, for years? always in pain". Yes, i try not to dwell on that, but sometimes it does seem like it's a made-up--too much going on--hard to even imagine (if I weren't experiencing it!) Maybe we can start a "Rant-a-day" thread? :)
 
My gut feeling is that Klimas or another excellent researcher/geneticist/immunologist will figure out the most important question of what the hell this is within the next five years. I'm participating in an exercise study at U of M through Klimas which is going to measure immunological response before during and after exercise and then do it again the next day. The goal is to see what genes turn on or off that shouldn't. I am throroughly convinced that like cancer, CFS/ME is a genetic maladaption of cellular function. Some genes when turned on tell the body to produce cancer cells and I think we're going to find the same thing in CFS/ME. Hopefully, once they discover which genes are malfunctioning, immune modulators or targeted gene therapy can be developed which will actually work.

Until such time, I stand by the heading of my original post.
 
Gregg, I feel exactly the same as you although it's 11 years for me, not 15. But I can easily imagine it being 15 or 20 or whatever. I have to say though I am on GcMAF and while I don't know where Navid is, the GcMAF I AM getting is only 35euros a shot, which is not an "expensive crapshoot" if you ask me. I'm trying tobe balanced--right now I'd say personally I'm on the fence re: GcMAF.

Anyway, I just wanted to say that Spitfire's right and we all think these things, we just don't all say it, and I'd much rather hear truth being told like this than someone trying to go all Pollyanna on me for the umpteenth time saying there's always someone "worse off" because it's not MS or cancer. You know what? I'D RATHER HAVE MS OR CANCER. I'm not joking. MS sufferers get way more recognition which let's face it makes a world of difference with coping with the illness both financially and emotionally, and I swear to God I've heard numerous cases of cancer remissions in my own church whereas I have never heard of a single case of CFS going into "remission", being cured, whatever you wanna call it. And I know at least a handful of cancer patients/survivors who are more mobile, more productive and more "normal" than me so, yes, CFS sucks a***. So sue me.
 

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