Organ donation and blood donation

From Twitter this morning

It strikes me as a little strange?
https://twitter.com/user/status/1165592099078705153

 

Irresponsible

 

in the thread it states that there has never been a ban on organ donation from pwME - it is based on the condition of the organ.
Is this just a lack of joined up thinking again?

I would agree @Iansbergen - seems irresponsible to me too
@Jonathan Edwards - any comments?

 

I've mentioned before, I know someone with ME who donated a kidney to her son and now he has ME.

 

Crazy.. Did it happen straight after the donation? ME does run in families so

 

The donor believes that her son got her ME with the transplant. I expect it was a complicated situation with various factors in play and I don't know all the details.

 

I stopped carrying a donor card because of my ME. A friend who had a kidney transplant argued with me because he said organs were needed, yet despite his ongoing ill health he was able to work and go on holiday while I stayed at home lying down most of the time.

I would not wish this disease on anyone and would not take the chance until much more is known. After hep C and AIDS it is only right.

 

In the short window between the AIDS crisis breaking and getting sick myself in 1984 I was regularly donating blood due to the great need that flowed from AIDS and the AIDS-related hysteria reducing donations.

That ended when I came down with CFS. The greatest fear I've had over all these years if that I might cause someone else to contract this horrible illness. I'm blessed in not having done that to the best of my knowledge.

I would never donate organs without greater assurances it was safe, despite organ donations being something I'd do in a heartbeat were I a healthy person.

Bill

 

The first person to say they will donate their Giant Wurlitzer when they no longer have need for it should be ashamed.

 

I was originally diagnosed with a form of migraine, so because of my frequent bouts of ill health and because blood donation was seen as a great good in my family, I went regularly. Like you I worry that I passed it on.

We will never know but our good intentions only went wrong because of complacency and neglect by the medical community. They knew by 1955 that there was an epidemic disease called ME and they could have invested time and money to getting to the bottom of it then. instead they comforted themselves with mass hysteria by women and deluded doctors, so here we are.

 

In my case, I stopped donating blood immediately upon getting sick. In 1984 no one understood what this mystery illness was (not that things have improved much ) here in the USA, but I wasn't taking any chances that I might have a blood-born contagious disease.

I can't believe we still don't have firm answers after all this time.

Bill

 

Was a bit unsure where to put this, but interesting blog post from Sissel Sunde who asked the Norwegian National Competence Service for CFS/ME about donating blood as ME patient.
She has also collected some relevant history, references and quotes both in the blog post and in her communication with the Competence Service.

This is the response she received:

Hi!

I don't quite understand your reasoning here.

The blood banks operate with their criteria regarding who can give blood. According to Health Norway, only persons between the ages of 18 and 60, who feel healthy, weigh more than 50 kg and who are not in risk groups regarding infections are relevant blood donors. Therefore, patients with CFS/ME are hardly relevant blood donors. Giving blood can cause transient dizziness and nausea for some healthy individuals, and we therefore generally believe that CFS/ME patients should not give blood as long as they are ill.

Regards
Ingrid B. Helland
Senior physician, Head of National Competence Service for CFS / ME
Rikshospitalet, OUS

Sissel Sunde: Kan ME-pasienter gi blod?
google translation: Can ME patients donate blood?

 

I'm a member of a long covid support group here in Hungary and now that the covid situation is getting much worse than ever here (record high number of infections, much younger people with much worse symptoms than before with the new strains, etc), so now in the current situation I see desperate people, family members of young people with rapidly deteriorating condition, ask people with long covid to donate blood plasma, so more of it would be available for treating covid.

 

Given the symptomatic similarities, and that people with ME aren't allowed to donate blood, is it entirely ethical, or sensible, to inject people with blood products derived from people with long covid?

Just because a few treatments have historically been made this way, as attempts at a quick fix?

When it's been shown that doing this made no difference to either outcomes, or, presumably, antibody levels, in testing in the UK?

 

A bit behind in my reading but flu was always considered to have a prolonged convalescence in some people. The common feeling in my working class family in the 50s/60s was that you should take things easy after flu so you recovered better. How this has been forgotten by educated people amazes me.

There is confusion about whether ME is banned from giving blood.

Basically, you are not allowed to give blood if you are unwell. There is only a question of giving blood with ME if you are recovered but you have to be really sure you are not just in a remission before you consider donating. It is the same with longcovid. It doesn't need any new rules at all.

The real question is this; the rule about not giving blood unless you are well is for the safety of the donor but is it safe for the recipient of the blood to get it from someone with ME (or longcovid). That is where the debate has to be.

Personally, I have opted out of organ donation and, of course, can't give blood anyway, on the off chance that there is something transmissible in our blood.

 

In that BBC programme on Covid-19 a few weeks ago presented by the van Tulleken twins, there was something, maybe just a single sentence, which seemed to imply that using convalescent plasma on patients might actually make things worse. I barely registered it at the time, and can't remember at all what it was now ...

 

I would love to donate my organs to science, not to a heathy individual who might then get sick as a result.

 

This is not correct. see
https://www.s4me.info/threads/blood-donation.2429/page-4#post-169219

 

Here's the NHS page you need to register, amend or withdraw a decision and explaining what the choices mean:

https://www.organdonation.nhs.uk/register-your-decision/