Poll What degree of risk would you accept for a complete cure?

[VLynx]

This poll is purely hypothetical, meant to elucidate the degree of suffering people experience by showing how much risk individuals suffering from ME/CFS would be willing to accept. Often we hear that a treatment is "not worth the risk" because of beliefs that the illness is benign, so dangerous therapies are not warranted.

The question asked in the poll is whether you would try a treatment that is either going to a. cure you completely, or b. kill you dead, nothing in between. Would you try it if it kills just a few people, half of people, most people?

Apologies if this has been done before!

 

[Cort]

This poll is purely hypothetical, meant to elucidate the degree of suffering people experience by showing how much risk individuals suffering from ME/CFS would be willing to accept. Often we hear that a treatment is "not worth the risk" because of beliefs that the illness is benign, so dangerous therapies are not warranted.

The question asked in the poll is whether you would try a treatment that is either going to a. cure you completely, or b. kill you dead, nothing in between. Would you try it if it kills just a few people, half of people, most people?

Apologies if this has been done before!

What a great poll! I am going to pass it around

 

[VLynx]

What a great poll! I am going to pass it around

Thanks, Cort. I'd love to see this done as a real study to put beside those on quality of life measurements for ME/CFS.

 

[Nancy olson]

The isolation of MCS bothers me more than the pain. Being single and no longer having close relationships causes more pain than FM.
My dog in the pic has died, suddenly. She had extreme allergies so I identified closely to her.

I voted for the 50/50 chance for a cure or death because i am living my life open to what the universe wants me to do.

 

[Willowtree]

My vote on this poll would have been very different in the first few years of illness. Back then, I was not used to coping with the array of symptoms, and felt I was missing out on life. My level of symptoms was not greatly different to how it is now, but my suffering was far greater.

Having been ill now for nearly 20 years, I have learned to accept and live within my limitations, and find new ways of getting enjoyment from life. I am a very different, much calmer and happier person than I was when I fell ill. I still find I cannot do all that I want to do, but manage to enjoy every day despite that.

The only thing that has changed is my attitude and approach to my ill-health. In fact, having had a hip operation at the end of August, I'm even more limited and housebound than I was, yet still feel a great desire to go on living, despite my suffering. As a result, my level of acceptable risk has dropped considerably down to 1%. It's no indication of my level of ill-health, or desire to be well, only how much I want to go on living, regardless of the consequences.

On the other hand, if the risk of the treatment were that it would make me worse, or add new and inconvenient additional symptoms, my willingness to take a risk would be higher, at 90% if not more. I'm simply not willing to be killed by a treatment.

 

[Katie]

Oh, I have felt like dying or felt I was dying at times with this horrific disease. I just wanted it to end. Instead with help from doctors who knew what they were doing, I have improved to the point where I am quite glad to be alive, in pain and exhausted still but instead of 8-9/10 for pain and 2/10 for exhaustion I now range between 4-6 for pain and 4 for energy. Still not great but I can do some things. I also have a wonderful caring and helpful husband, 3 kids and 4 grandkids that keep me interested and involved in life.
When I felt like I was dying I may very well have taken anything risk or not to get better. Now that I feel a bit more positive then no, I wouldn't want to take a risk knowing that maybe, hopefully, someday there will be a know cause, treatment and one day a cure. Hope.

 

[Cort]

I put 5% - I surprised myself a bit by running such a low risk - then again there's no coming back from death...

Still a complete cure! Wow - that's worth quite a bit of risk...I think. I might go higher - particularly the older I get.

 

[Diana Yoksas]

This poll is purely hypothetical, meant to elucidate the degree of suffering people experience by showing how much risk individuals suffering from ME/CFS would be willing to accept. Often we hear that a treatment is "not worth the risk" because of beliefs that the illness is benign, so dangerous therapies are not warranted.

The question asked in the poll is whether you would try a treatment that is either going to a. cure you completely, or b. kill you dead, nothing in between. Would you try it if it kills just a few people, half of people, most people?

Apologies if this has been done before!

I feel like a great risk that the treatment may "kill you dead" is acceptable...but additional suffering, which eventually will lead to death, is not something I would risk. Do or die, I say!! I believe that death is a great adventure and one where your consciousness will continue on without the dreadful and debilitating symptoms many of us with a body are now 'living" with.

 

[justME]

in the beginning it would've been around 50/50, now I went with the <1% option since I know for 98% what's been making me ill and that it doesn't take anything lethal, like Ritux might possibly be from my understanding, to treat it...the bugs are minor, the location and therefore effect MAJOR

 

[Cintia]

I observed that the more sick I am the more the risk i would take. So, when I'm in an outbreak i wouldn't mind taking higher risk and test new methods, but once i feel better i change my opinion about it. I guess it's notrmal, the more desperate you are the less you care to risk and give it a chance

 

[seakhb]

I'd be curious to see a poll on risks of a therapeutic intervention vs chance of major improvement, since there is unlikely to be a cure in the foreseeable future. I'd be willing to incur risk just for a chance at significant improvement. As I've gotten sicker over the years, I've become increasingly willing to try an experimental treatment, even one that carries some risk.

 

[Dee4dogs]

I'm in agreement with Cintia, the more miserable my daily life, the more I'd be willing to take a risk.
And although I have had more illnesses like herniated discs, arthritis, etc pile on to my plate, I've learned to live with sick being my normal. I forgot what it was like to live any differently. And as I've matured I have found things in life that I can enjoy doing in spite of my illness. I'm 52, never been married, never had any children. That use to upset me a lot. My life was hijacked by CFS & Fibro. But now I find enjoyment with things more than I use to.

I will say this...I did spend over $15k with a naturopath over a 2 year period. I had never seen him in person. It was by phone consults only. My sister freaked out when I did this because anything could have been in the bottles of tincture he was making exclusively for me. But I was DESPERATE. I didn't feel like I was enjoying life and didn't have anything to lose but money. My sister said "you would have killed me if I did something like this!". (Yes I would have.) I did feel better during the course of his protocol but I had to come off due to the cost. At at that point I was supposed to be "cured". Actually according to his original pitch, I was supposed to be cured after I think it was 3 mos. I'm a risk taker but on this one I voted 99/1.

I've recently decided to file for disability. I think if I was forced to work right now my answer would be different. It's tough doing this on your own.

 

[Abrin]

If I was just by myself and on my own I'd have no problem risking death but because I am in a relationship I couldn't make my partner suffer my demise even if it meant the chance of a better life for me.