Should PWCs donate organs and tissues after death?

[Arius]

I live in Ontario (Canada) and just got my licence renewed. I have the option to fill out an organ donor card. If I choose to donate my organs and tissues, I have the option of selected certain organs and tissues that I don't want to donate:

A. Kidneys
B. Heart
C. Eyes
D. Bone
E. Liver
F. Lung
G. Skin
H. Pancreas

There is no option to say "hey you can have my organs but they might give you an awful, debilitating chronic illness."

I'm not sure what to do. Apparently people are dying from lack of organs, and I do think living with CFS/ME is slightly better than being dead (otherwise I wouldn't be here right now). So I'm tempted to list myself as a donor.

Plus my personal theory of CFS/ME is simply that it's a way that the cells of people with certain genetic predispositions react to years of intense chronic stress from multiple stressors. I don't believe it's a virus or anything like that.

But we don't KNOW what the cause is or isn't. And I do suspect that chronic activated Epstein-Barr Virus (EBV) may be a factor for me, as is CMV and HHV-6 etc for a lot of PWCs.

Thoughts?
Are there organs or tissues that are more or less safe to donate?

 

[Arius]

I did find this article, which seems to suggest it may be okay for PWMEs to donate organs, but only tissues if they are in recovery. So I guess I can donate everything but my skin?

https://meassociation.org.uk/2011/10/can-people-with-mecfs-donate-tissues-and-organs/

 

[Rufous McKinney]

I have the option to fill out an organ donor card. If I choose to donate my organs and tissues, I have the option of selected certain organs and tissues that I don't want to donate

I think its dangerous, and should not be pursued. I do not donate blood. We should not be donating our blood, because we have "something".

Since we still don' t know, it would be horrible to go thru an organ donation only to receive a dose of ME.

 

[andyguitar]

But we don't KNOW what the cause is or isn't

No we don't, and for that reason, in my opinion, it's better not to use donated organs from those with me/cfs.

 

[ljimbo423]

Plus my personal theory of CFS/ME is simply that it's a way that the cells of people with certain genetic predispositions react to years of intense chronic stress from multiple stressors. I don't believe it's a virus or anything like that.

I personally don't think ME/CFS can be passed on from organs, blood etc. I don't know of any scientifically documented cases of a person developing ME/CFS from an organ transplant or donated blood.

I also think if ME/CFS was contagious, through the blood. Most children born to mothers with ME/CFS would develop it. Again, I know of no solid scientific evidence of this either.

Good luck with your decision. Whatever it is, I hope you feel comfortable with it. You are certainly doing your homework!

 

[Sushi]

I have the option to fill out an organ donor card. If I choose to donate my organs and tissues, I have the option of selected certain organs and tissues that I don't want to donate:

Another option: donate your tissues/organs to ME/CFS research--then you might be helping thousands!

 

[Rufous McKinney]

donate your tissues/organs to ME/CFS research-

I've always been a bit- well, NOT ME...no I don't want to be a donor. I taught human physiology labs and had to be in there with the formadahyde bodies. But I appreciate the willingness of noble others.

But donate my brain to ME Science: I can really get behind that one, and I will in fact do whats necessary to: declare that.

 

[Sushi]

But donate my brain to ME Science: I can really get behind that one, and I will in fact do whats necessary to: declare that.

Yes, donating your body to medical schools does have a shudder aspect but donating brain and tissue to a specific ME/CFS researcher or research group, who would, with respect and gratitude, use it to further research using methods that just can't be done with a living body, sounds good to me. Also, it is possible--I know one family that did that. Perhaps some of us could research how this could be done?

 

[Judee]

I offered my bone marrow once to a group that does that but they said they could not use mine. I do not remember if it was because I am IgM deficient or because of the ME or both.

I have heard that the Red Cross will not take our blood, I think I heard that here but my chiropractor also confirmed that the question is on the form people fill out when they go to donate.

My understanding is that it is because medical science still has not pinpointed how people get this disease. I would assume that would be similar for organ donation but don't know for sure.

 

[Art Vandelay]

I've spoken to a number of people who developed ME/CFS after a blood transfusion (or after surgery which required a transfusion).

There's no way I'd wish this illness on anyone else so I do not donate blood (the Red Cross here officially does not accept blood from ME patients regardless) and am not an organ donor.

Edit: I believe Michael VanElzakker is looking for donations of brain and other tissue to test his vagus nerve infection theory.

 

[Rufous McKinney]

I have heard that the Red Cross will not take our blood,

I swear I did once confirm this....at a point in time. Somebody who accepts blood donations clearly prohibited Eppstien Bar victims.

However, attempts to confirm again, are highly variable.

If you are unhealthy, ill, have a "chronic illness" your supposed to feel good when you give to Red Cross it seems.

We never really feel good.

I did see mononucleosus specifically restricted in some random online private donation place. Your supposed to have recovered from your mononucleosus.

Since my view was I never did recover- something chronic and ongoing captured me, I've never given blood.

 

[L'engle]

We aren't allowed to donate blood in Canada. I've never felt like I had enough blood to spare anyway being prone to anemia and being generally exhausted. Noble of those who can and who don't have health restrictions to do so. Donating to ME research would be a worthwhile thing for those with ME/cfs who are less creeped out.

 

[Rufous McKinney]

I've never felt like I had enough blood to spare anyway being prone to anemia and being generally exhausted.

Supposedly, if you give blood, the body goes and makes some fresh new batch. Which some think has some rejuvenating quality.

So there is that, maybe.

 

[Strawberry]

I don't know of any scientifically documented cases of a person developing ME/CFS from an organ transplant or donated blood.

I always wondered if I got something from my blood transfusion. Although I’d be dead without that donation, so how would I know.

I gave blood once about 20 years ago. I literally had a few rocks in my pockets to just barely hit the weight limit, and feasted on steak and spinach and barely had enough iron. I had just passed my “do not donate because of blood transfusion“ stage, and was happy to finally donate at a company blood drive. I’ve always wondered what happened to the person that got my single donation. I’ve felt bad ever since finding out I’m not supposed to donate..... I’d love to know.

 

[Arius]

The donating my body specifically to CFS/ME research idea is interesting, but how does one choose where to donate their organs etc? On the thing I have to fill out, I can choose to donate my body to "science," but that's as specific as I'm allowed to get.

 

[maple]

@Sushi how do I donate my body to research on ME/CFS? Not in a hurry of course!

 

[Sushi]

@Sushi how do I donate my body to research on ME/CFS? Not in a hurry of course!

Good question! I think it changes all the time but some researchers are accepting organs and tissue. I think we just have to ask the ones that we are in touch with.