Blood Donation, M.E, and Long Covid.

Hi,

Long-time Foggy Followers will know that I have been posting about donating blood whilst living with M.E since around 2015, in fact I created this image in 2015 and it is shared fairly regularly across Foggy’s social media channels. The issue of the ‘ban’ from donating blood for M.E patients has caused confusion for a long time and now it seems to also apply to Long Covid. With so much talk of the blood of Long Covid AND M.E patients containing blood clots that aren’t detectable in standard blood testing, I thought it was important to flag this with my MP to make sure this isn’t a future ‘blood contamination scandal’ waiting to happen.

In the spirit of transparency, and so that nothing is lost in translation, I am going to copy and paste the email I sent to Stephen Morgan MP and the responses I received from his staff on 5th May 2022 and today. Please note that Long Covid is not mentioned in the email I received today.

Hello Mr Morgan,

First response

Today – Second response

Dear Sally,

Thank you for your email to Stephen Morgan MP regarding blood donation for people with M.E. and Long Covid.

We have received the following information from the House of Commons regarding C.F.S./M.E. and blood donation guidelines:

Blood donation eligibility and individuals with CFS/ME
The NHSBT website includes a section on Health, Eligibility & Travel which provides an A-Z of conditions, medications and other reasons why someone’s eligibility to give blood might be limited.  The section on CFS/ME states that “we cannot accept a donation if you have this condition or if you have previously had the condition even if you are now recovered.”  As you note, the condition is not mentioned in the eligibility checker on the website but this clearly states that “this checker only covered the most common reasons that people can’t give blood and other eligibility criteria do apply. Our staff make the final decision as to whether you can give blood when you attend your donation appointment.”

The Joint United Kingdom (UK) Blood Transfusion and Tissue Transplantation Services Professional Advisory Committee (JPAC) produces detailed guidelines for the UK blood transfusion services and provides advice to these services.  Its detailed Donor selection guidelines provides information for healthcare professionals on eligibility for blood donation. It provides the following information on individuals with CFS/ME which states that blood donation may “make symptoms worse or provoke a relapse in an affected individual”.

You may also find a 2010 Department of Health letter published on the ME Association website useful.  In response to an enquiry about people with CFS/ME donating blood, the then Director of Health Protection at the Department of Health set out that blood donors who have (or have had) CFS/ME will be permanently excluded from giving blood on the grounds of donor safety:
As of 1^st November 2010, blood donors who report that they have had ME/CFS will be permanently excluded from giving blood in the UK. This change is being made on the grounds of donor safety, as ME/CFS is a relapsing condition. It brings practice for ME/CFS into line with other relapsing conditions or neurological conditions of unknown origin.
The change to donor selection criteria is being made following a recommendation by the UK Blood Services Standing Advisory Committee on the Care and Selection of Donors, and Joint Professional Advisory Committee (JPAC).

You specifically mentioned a PQ response from October 2010, I include the text of this below:
Chronic Fatigue Syndrome
Mr Anderson: To ask the Secretary of State for Health if he will review the level of multidisciplinary team provision for chronic fatigue syndrome/myalgic encephalomyelitis (ME) to take account of the decision not to receive blood from people diagnosed with ME. [19306]
Paul Burstow: The ban on blood donations from those living with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), to be introduced from 1 November 2010, is a precautionary measure. At the moment there is no clear evidence for the cause of CFS/ME, and health professionals should continue to use their clinical judgment to provide health and social care based on existing guidelines.

Assessment of potential donors
The JPAC Guidelines for the Blood Transfusion Service provides guidance on all aspects of blood donation, and the processing and use of blood products.  Its section on care and selection of blood donors states that:
Only persons in good health shall be accepted as donors of blood or components for therapeutic use.
A prospective donor’s medical history must be evaluated on the day of donation by a suitably qualified person who has been trained to use the JPAC Donor Selection Guidelines.¹
If there is any doubt about the suitability of a prospective donor, a donation should not be taken and the details should be referred to the designated clinical support staff.
Each Blood Establishment responsible for the collection of blood should include a medical consultant who will take professional responsibility for the care and selection of donors. The immediate responsibility is that of the healthcare professional in attendance at the session.

It explains that the medically qualified consultant “should ensure that all staff are appropriately trained and that clinical standards are maintained.” The guidelines set out the information that should be taken about an individual’s medical history:
Health and medical history, provided on a questionnaire and through a confidential personal interview performed by a qualified health professional, must be assessed. This will include relevant factors that may assist in identifying and screening out persons whose donation could present a health risk to others, such as the possibility of transmitting diseases, or health risks to themselves. Donors must be selected in accordance with the current JPAC Donor Selection Guidelines² which form a constituent part of Chapter 3.

Information on the regulation and monitoring of blood donation clinics and wider services is provided on the NHSBT webpage, Policies and regulations.  The Care Quality Commission is the independent regulator of health and adult social care in England and is responsible for monitoring and inspecting clinical services, such as blood donation clinics.  Individuals can also give feedback on care provided through the CQC website.

We appreciate that there is always the chance that donors may attempt to conceal some conditions to enable them donate blood, however the guidelines in this instance are set out to help the sufferer rather than prevent risk to the recipient.

We do hope the information contained in this email is of use, and we thank you for bringing your concerns to Stephen.

Kind regards,

My thoughts

I’ll be replying to this email as I still believe that the clots issue is not being considered here with either M.E or Long Covid. If they can’t be detected on standard blood tests then how can we possibly know they are being filtered out?

The two important bits are:

The ban on blood donations from those living with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), to be introduced from 1 November 2010, is a precautionary measure. At the moment there is no clear evidence for the cause of CFS/ME, and health professionals should continue to use their clinical judgment to provide health and social care based on existing guidelines.

We appreciate that there is always the chance that donors may attempt to conceal some conditions to enable them donate blood, however the guidelines in this instance are set out to help the sufferer rather than prevent risk to the recipient.

I have a vague memory of contacting the National Blood Service back in 2015/16 and asking for their reasoning behind the ban. Back then, I was told that it was because M.E is too ‘unknown’ and we were banned due to safety concerns for the recipient. I can’t find the email so can’t ‘prove’ this, but I had definitely been told this when I queried it over 6 years ago. Other pwME have also told me that they were given the same reason when they queried it too.

I know that SOME donation clinic staff allow M.E patients (and now Long Covid) to donate despite being on the exclusion list on their website. This extract from response email two would only make sense if ALL medical professionals were educated about M.E and could judge with certainty whether an M.E patient (and now Long Covid) is in ‘good health’.

Only persons in good health shall be accepted as donors of blood or components for therapeutic use.
A prospective donor’s medical history must be evaluated on the day of donation by a suitably qualified person who has been trained to use the JPAC Donor Selection Guidelines.¹
If there is any doubt about the suitability of a prospective donor, a donation should not be taken and the details should be referred to the designated clinical support staff.
Each Blood Establishment responsible for the collection of blood should include a medical consultant who will take professional responsibility for the care and selection of donors. The immediate responsibility is that of the healthcare professional in attendance at the session.

Another email coming up! Everything comes back to the poor knowledgebase doesn’t it?! How can medics use their clinical judgement if they do not know about the disease affecting the patient sitting in front of them?

Love

Sally

and Foggy (OBVIOUSLY)

xxx