M.E and Long Covid – Blood Donation (Part Two)

Hi,

This blog is an update to – Blood donation, M.E and Long Covid.

The key theme of my concerns with this issue was summed up with this paragraph in the email sent to Stephen Morgan MP (see previous blog) –

 ‘I strongly believe there needs to be a nationwide communication strategy about M.E and Long Covid being ‘excluded’ from donating blood. Too many Long Covid and M.E patients (and clinic staff) do not know that this is the policy.’

Having now received a reply from the NHS Blood and Transplant Service, I still believe this to be the case.

Again, in the spirit of transparency, I have copied and pasted the email received (the message sent to Give Blood UK was on their contact form and so I cannot copy and paste it here but it was very similar to the email I sent to Stephen Morgan MP – see previous blog).

NHS Blood and Transplant Service reply

Donor Response – North north.donor.response@XXXXXXXX.uk

Fri, 17 Jun, 12:11 (22 hours ago)
to me

Dear Ms Callow

Thank you for your message received via our website on 1st June 2022.

Please accept my apologies for the delay in responding.

I understand that you are concerned that the eligibilities of individuals with M.E. or Long Covid in regard to blood donation are not known about or understood widely enough.

The Joint United Kingdom (UK) Blood Transfusion and Tissue Transplantation Services Professional Advisory Committee Donor Selection Guidelines are observed by all the UK blood services including NHS Blood and Transplant.

These guidelines are regularly reviewed and updated as better knowledge and understanding of conditions arises and/or new treatments are developed, in order to continue to safeguard both donor and patient safety.

The guidelines for both M.E and Long Covid incorporate the best evidence and best practice guidance. At this time there is no evidence of transfusion transmission of M.E or COVID-19. Donor safety is the basis of the criteria included in these guidelines which is referred to in the Additional Information sections of the respective guidelines.

The relevant guidelines can be found at: https://www.transfusionguidelines.org/dsg/wb/guidelines/ch013-chronic-fatigue-syndrome and  at: https://www.transfusionguidelines.org/dsg/wb/guidelines/coronavirus-infection

There is an updated version of the COVID guideline in progress at present with continuing emphasis on the requirement for individuals to have fully recovered from Coronavirus infection including those with Long Covid (also now termed ongoing symptomatic COVID-19 and Post-Covid-19 syndrome) and therefore individuals with any ongoing problems or risks due to clotting abnormalities are not eligible.

Our screening questions assess a donor’s current health and should identify donors with M.E or Long Covid, and all our staff are trained to provide the appropriate advice and defer or accept donors accordingly. We rely on donors to answer the questions truthfully. We know that some donors may choose to modify their answers to allow them to donate.

We sincerely appreciate your comments and concern but feel that our current donor selection processes are suitable to ensure donor safety.

The guideline for M.E. has been in place for many years and is well known to staff. I have discussed your concerns with the Chair of the group that write our donor selection guidelines. When we update our COVID-19 guidelines, we will take the opportunity to add ‘Long Covid’ and related terms to the guideline index. These will ensure users are taken to the COVID-19 entry when assessing these donors.

I hope this provides a satisfactory explanation and reassurance about our process and the regulation that underpins this and within which we work; we take our responsibilities in ensuring donor and patient safety very seriously.

Kind regards

Dr XXXX XXXXXXX

Donor Medical Team

NHS Blood and Transplant

 

To be clear (extract)

There is an updated version of the COVID guideline in progress at present with continuing emphasis on the requirement for individuals to have fully recovered from Coronavirus infection including those with Long Covid (also now termed ongoing symptomatic COVID-19 and Post-Covid-19 syndrome) and therefore individuals with any ongoing problems or risks due to clotting abnormalities are not eligible.

and

Our screening questions assess a donor’s current health and should identify donors with M.E or Long Covid, and all our staff are trained to provide the appropriate advice and defer or accept donors accordingly. We rely on donors to answer the questions truthfully. We know that some donors may choose to modify their answers to allow them to donate.

My Opinion

To be clear I am not saying that either M.E or Long Covid are transmissible by blood, but I AM saying caution needs to be applied and vigorously.

There may not be any evidence of transmissibility with M.E but there is no evidence that there is no risk of transmissibility either. It’s only been in recent years that it was proven that M.E was ‘found’ in blood and even more recently that it was found that M.E patients have more clots than ‘healthy controls’. The blood donation ‘ban’ is in the interests of public safety (and donor’s best interests as it could cause a relapse) because there are too many ‘unknowns’ and so I still believe there needs to be an effective communication strategy across the UK. The fact that I had seen a Long Covid patient state on Twitter that they had recently given blood to see if it helped symptoms caused by clots is concerning (see previous blog).

I think there is an assumption that potential donors will have checked eligibility on the official NHS Give Blood UK website – NOTE – the Long Covid page does not mention clots YET and also doesn’t allow for the many people who ‘recover’ for a few months and then deteriorate. It also doesn’t allow for the many people who are in limbo waiting for diagnoses and testing but may feel ‘slightly better’.

The glaringly obvious issue that I can see with my Stripy Lightbulb CIC head on is that, if the ‘ban’ hasn’t been cascaded down to every clinic and it is at the clinic discretion whether an M.E patient can donate – have clinic staff been trained on M.E? Do they know it is present in blood? Do they think it is psychological?  We know it hasn’t been cascaded down to every clinic because different patients are told different things by clinics. Some people with M.E are still donating in 2022, despite me raising this ‘ban’ issue since 2014.

I have searched online for a Donor Questionnaire example to see if any of the screening questions would screen out M.E or Long Covid. In my opinion, no they don’t. If a patient has had a ‘good’ fortnight, has had their illness downplayed by their GP, and thinks it’s psychological, of course they will answer yes to the question ‘are you in good health?’. We know that, as with M.E, there is a spectrum of severity/symptoms with Long Covid and someone who ‘only has a mild experience of ‘loss of taste and smell’ may consider themselves to be ‘in good health’ – this person may still have clots though.

Personally, I believe there should be a blanket ban on donating for anyone with even one symptom post-acute COVID19 for 3 months (minimum).

We keep being told that COVID19 is ‘novel’ and Long Covid is a ‘new phenomenon’ and medicine doesn’t know what it is dealing with so……

Act with caution

I’ll be forwarding the NHS Blood Transfusion Service email to Stephen Morgan MP with my concerns.

Ps. I don’t doubt that the NHS Blood and Transplant Service take patient safety very seriously, but not enough is known about transmissibility and I believe they could be doing much more in terms of communicating with M.E and Long Covid patients re. the ‘ban’.

Most of the issues I have been raising throughout the COVID19 have, at the centre, been caused or exacerbated by a need for better communication. First it was asking the Government to communicate about the risk of chronic illness from COVID19, then it was asking local Government to communicate about the risk of Long Covid, then a few smaller communication issues were raised with the NHS and Government, and now this.

Informed people make informed decisions.

Love,

Sally

and Foggy (OBVIOUSLY)

xxxxx

 

PS. Don’t forget about Foggy’s latest fundraising – ‘Foggy’s A to Z Adventures Around The UK’ – please donate if you can. Foggy is fundraising for Cure ME and biomedical research.

Thanks!

 

 

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