How Much Compensation are we Due?

[dannybex]

Hey DannyB,

I'd love to hear more about the recovery stories. I'm on the milder end of the CFS spectrum, which is still unimaginably awful. No exercise, a shadow of a life, and the all the rest (except I can still work).

I want to know if these recoveries were full recoveries (complete return to pre-onset condition)- or just a significant symptom reduction.

That is something I haven't heard of yet.

I'm kind of shocked that you haven't heard this. But again, it is rare, and I think that's due mainly to the fact that most of the tests/treatments,etc., require $$$ (which I don't have!) because they aren't typically covered by most insurance plans. Again, an interview with Dr. Klimas would be great, but her quotes can be found with a google search.

But also extremely critical to the recovery process, is "letting go" and allowing oneself to 'accept' being ill, and maybe not recovering -- instead of "fighting" it (which is hard to do -- I want to get well YESTERDAY!). That's the one thing that the people I've met had in common -- they did a lot of 'active resting', instead of pushing/crashing/running from doctor to doctor to doctor.

Perhaps I can go into more detail at some point -- right now I'm in severe crash mode -- been that way off and on since December -- but like I say, they all had different triggers for the most part, but often removing on or two of the problems reduced the strain on their immune system so that other things resolved.

Cort has interviewed Martha Kilcoyne -- a woman who when she was ill could barely walk to her own bathroom at times, but 3-4 years later "celebrated her wellness by climbing Mount Kilimanjaro in 2000."

She relapsed a bit last year, but is now back to normal again. Here's the link:

http://www.forums.aboutmecfs.org/co...nterview-with-Martha-Kilcoyne-by-Cort-Johnson

klunk. :Retro smile:

 

[*GG*]

Hey DannyB,

I'd love to hear more about the recovery stories. I'm on the milder end of the CFS spectrum, which is still unimaginably awful. No exercise, a shadow of a life, and the all the rest (except I can still work).

Not sure why you are still working, because you have to or you do not think you are not disable enough? check out this if it's the later: http://aboutmecfs.org/News/PRJan09Pacific.aspx

I am still working, but that's about all I do with my life, not much of a life!

 

[Carrigon]

I would like to see a government pension given to those who have severe CFIDS/ME and have lost most of the years of their lives from this disease. No matter what anyone says, this disease was covered up, denied, and belittled by governments all over the world for more than twenty years. We deserve some kind of compensation for that. No, it won't fix it, it won't cure it. It won't give back all the years and all the things we've lost. But it is deserved. If it wasn't covered up and denied and belittled, I wouldn't be saying so, but it was and is.

 

[Carrigon]

There's also the matter of, if XMRV turns out to be the one, if they willfully let us be typhoid mary's of a prostate cancer virus for over twenty years. Have we been spreading it silently to partners? The implications are huge there. And if it does turn out to be the case, then it becomes a sexually transmitted disease like AIDS. And we'll get stigmatized. Plus, they let it float in the blood supply all these years. Someone is responsible for this, and whatever group it is, they need to pay. They need to be fully exposed to the world and pay for this.

 

[biophile]

I doubt there will be major consequences for these people, at least those with good weasel skills. I think we have been dealing more with ignorance and incompetence than malice. Some displayed contempt for patients, but obvious malfeasance may be difficult to prove in court. At most their views will be discredited and they may need to change jobs, but "jail" for Reeves et al is unlikely. However I certainly would not discourage anyone from taking legal action or some other non-violent retribution.

Some HIV-AIDS denialists died of HIV-AIDS. Will biopsychosocialists and future XMRV-denialists be willing to inject themselves with XMRV and related cofactors? Wishing CFS on anyone would be cruel, a little too "eye for an eye" for me. However, we have suffered at the hands of public opinion, notions which were started or perpetuated by some of these people, so I wouldn't mind seeing their erroneous views openly discredited and I wouldn't lose any sleep if they themselves were subsequently subjected to the position of ridicule and derision we experienced as patients.

Major compensation is also unlikely, at most we may have an easier time receiving some forms of financial assistance, re-education/training and occupational rehabilitation, but that's basically it. The past is past, I don't really blame anyone, I just want these obstructors to get the hell out of the way so the science can help me get my full life back.