In view of the fact that people with active ME/CFS, or who have had ME/CFS in the past, are no longer able to donate blood Dr Shepherd asked the NHS if they could clarify the situation on tissue and organ donation.
This is their response:
We can confirm that people who have had CFS/ME can donate stem cells and tissues once the symptoms have resolved.
Guidelines for organ donation are not set by the Joint Professional Advisory Committee, however we have contacted NHS Blood and Transplant who have confirmed that people who have CFS/ME can donate organs.
There are a number of guidelines relating to donor selection for donors of blood, tissues and organs and we do not propose to publish statements for all of these.
Human tissue refers to a collection of specialised cells that perform a specific function. The cells may be of the same type (eg nervous tissue) or different types (eg connective tissue).
Stem cells are immortal cells that are able to produce all the cells that form an organ.
An organ is a part of the body that is composed of more than one tissue and forms a structural unit responsible for a particular function, or functions. Examples that are relevant here include the heart, liver, lungs and kidneys.
Please let us know if you require further clarification on any specific query relating to tissue and organ donation and we will go back to the official who is dealing with this.
Please email: feedback@meassociation.org.uk
Maybe the recipient should be asked if they are happy to receive an organ/tissue donation from someone ‘recovered’ from ME.
Well this is sad, I had better tear up my organ donation card which I have had in my wallet most of my adult life – despite all my efforts to get better, my symptoms have definitely not “resolved” in over 25 years…
I had myself removed from the NHS organ donor records after the NHS said that people with ME cannot donate blood. After all, blood has flown through all of my organs so they are bound to be contaminated and I would not wish this illness on anyone.
Afternoon,
Has the offending website from the donor people now been corrected to reflect that ‘we’ can donate our organs?
Sorry I can’t remember what the darn site was now – and I made the darned enquiry in the first place [rolls eyes in exasperation].
Thanks in advance 🙂
It worries me that in alot of autopsies of ME patients, infection has been found deeply rooted in many of the organs, tissues and cells. Never mind the muscle cell damage.
Not a well known fact with many professionals unfortunately.
I’m sure they’d check the organs thoroughly, but I definitely don’t think it’s the BEST idea. I couldn’t bear the thought of the people I thought I was helping, ended up so much worse.