Can people with M.E. donate blood, bone marrow and organs?

Whether people with M.E. can give blood is a question I’ve been asked both on and offline and I’ve seen a lot of discussions about this lately on Twitter. 8th-14th June was National Blood Week 2015 and a campaign by NHS Blood and Transplant (NHSBT), #MissingType, appealed for more donors. There has been a drop of 40% in new donors in the last year, compared with 10 years ago, and 204,000 new donors are needed to adequately maintain UK blood stocks[1].

On the NHSBT blood donation website there is a browsable database of health conditions which affect someone’s ability to give blood. M.E. is listed and referred to as Post Viral Fatigue Syndrome(PVFS), with the following information given about the ability to give blood:

“I am sorry but unfortunately, we cannot accept a donation if you have this condition or if you have previously had the condition even if you are now recovered.”[2]

In Blood and Transplant Matters, Autumn 2011 – Issue 34, available on the NHSBT website, Dr Sue Barnes, Associate Medical Director (Donors), explains that there are 3 factors that are considered when deciding whether someone can give blood[3]:

1. Whether the donor is safe to give blood because of a medical condition which may be worsened by the act of giving blood. M.E. patients may not be able to compensate for the rapid removal of 15% of their blood volume, including iron, from their circulatory system. Healthy individuals are not normally affected by giving blood.
2. Whether the blood donated is safe for transfusion for the recipient.
3. Whether components such as haemoglobin and clotting factors in the donor’s blood are of a suitable quality for the blood product.

A phone call to the information line advertised on the website (NHSBT Medical Queries, contacted 09/06/15) confirmed that the reason people with M.E. can’t give blood is for the first reason; that it may affect our M.E. in that it could cause a worsening of our health if we are currently unwell, or a relapse if our health has improved. This is also given as the reason in Dr Barnes’ article in Blood and Transplant Matters[3].

It occurred to me that the 204,000 new blood donors required almost matches the number of people in the UK said to have M.E., which is 250,000[4] but of course some of this number are children who will be too young to donate, or are of donor age but with other reasons for being excluded from donating.

It is encouraging to see that NHSBT both recognises our illness and acknowledges how serious a relapse is in not wanting the act of giving blood to worsen our symptoms. In the newsletter, Dr Barnes also describes M.E. as a serious neurological condition[3].

In 2009, the Blood Transfusion Services and Health Protection Agency Joint Professional Advisory Committee (JPAC) excluded people with M.E. from giving blood as a precaution due to the XMRV research findings of Lombard et al. in people with M.E. and its potential transmission to blood recipients[3]. As these results were not repeated subsequently, this was revised and in 2010 M.E. was added to the list of conditions permanently excluded from blood donation, due to donor health only[3].

In my phone call to the Medical queries line, I also asked whether there were any restrictions on organ donation. People with M.E. aren’t ruled out but the health of organ is assessed at the point of donation by the surgeon, which is the same as for healthy people[3].

At the request of the first comment below, I have also spoken to the Anthony Nolan Trust information line (contacted 19/06/15). The Anthony Nolan Trust administer the bone marrow register for the UK. There is a different system for this, in that you register but only donate when there is a need. The register is continually searched for matches for patients who require bone marrow transplants and stem cell products.

It is advised that only mild or totally recovered M.E. patients enter the register and the staff would need to make sure that you fully understand what is involved, should you become a match for a patient at some point in the future. The process of removing bone marrow is exhausting even for a well person as it involves travelling long distances to donate, with an overnight stay in hospital and it is a painful procedure.

Cases are looked at on an individual basis and I was told that if you are at all unsure about whether you could manage this now or any time in the future, that you should not enter the register because it is a long term commitment. Donors can be accepted onto the register aged 16-30 but then your name stays on the register until you are 60, to give an idea of the long term commitment involved.

Please feel free to comment in the section below. Comments will be moderated and all views will be respected.

Acknowledgement
I’d like to thank Dx Revision Watch for alerting me to the article in Blood and Transplant Matters in a Twitter chat, NHSBT Medical Queries phone line and the Anthony Nolan Trust information line.

References:

1 NHSBT. New blood donors in decline: 40% fewer new blood donors in 2014/5 than 2004/5. Jun 2015. https://safe.blood.co.uk/PressRelease/050615.pdf (accessed 18 Jun 2015).
2 NHSBT. My.blood.co.uk. My Donor Record – Health and Travel. 2015.https://my.blood.co.uk/Knowledgebase (accessed 18 Jun 2015).
3 Barnes S. Myalgic Encephalomyelitis and Donor Exclusion. Blood and Transplant Matters 2011;:7.http://www.blood.co.uk/pdf/publications/blood_matters_34.pdf (accessed 18 Jun 2015).
4 Pheby D. How common is M.E.?. InterAction Winter 2008 2008;:12.http://www.actionforme.org.uk/Resources/Action%20for%20ME/Documents/IA%2066%20How%20common%20is%20M.E.%20p%2012.pdf (accessed 18 Jun 2015).