World Blood Donor Day - Give or not to give this is the question?

[Mdaisy]

Hello fellow members,

Well, there has been much discussion around giving blood if you have Fibromyalgia especially as people with ME/CFS have been asked not to donate as from 2010.

Lindsey Middlemiss, Founder of FibroAction wrote to the Department of Health about Blood Donation & Fibromyalgia and received the following response 17.11.10;

Dear Ms Middlemiss

Thank you for your letter of 27 September, regarding the new restrictions for blood donation by patients with ME/CFS and their relevance to patients with Fibromyalgia Syndrome. Colleagues at the Department of Health have passed on your letter and asked me to respond directly to answer your query.

The change to the donor selection guidelines regarding ME/CFS came into force on 1st November 2010. The amendment has been made on the grounds of donor safety, to bring practice for those with ME/CFS in line with other conditions where individuals are permanently excluded from blood donation to protect their own health and other serious central nervous system disorders. This follows a recommendation by the UK Blood Services Standing Advisory Committee on the Care and Selection of Donors, and Joint Professional Advisory Committee (JPAC).

There is a separate entry in the donor selection guidelines for fibromyalgia. This is because unlike ME/CFS, fibromyalgia is not currently classed as a relapsing condition or a central nervous system disease by the World Health Organisation, but as a musculoskeletal condition. At present, a donor with fibromyalgia would be accepted as long as they were well at the time and did not have any additional features of ME or Chronic Fatigue Syndrome. I understand that most fibromyalgia patients report that their symptoms do not improve over time. Therefore the condition is classed as chronic rather than relapsing and as such at the present time does not attract a lifetime deferral from blood donation, although given the debilitating nature of the condition it is doubtful that there are many sufferers who are ever well enough to donate.

The Department of Health's independent Advisory Committee on the Safety of Blood, Tissues and Organs (SaBTO) and the National Expert Panel on New and Emerging Infections (NEPNEI), monitor developments, both nationally and internationally, in conjunction with the UK Blood Services and the Health Protection Agency. All risk assessments are regularly reviewed, and if new evidence comes to light which means that risk assessments need to be amended, then this is done.

I hope this information is helpful in addressing your query.

Yours sincerely

Dr S M Barnes FRCP FCEM

Associate Medical Director - Donors

fibroaction.org

In 2011 the following was written by Dr Sue Barnes

Associate Medical Director (Donors)

It is recognised that there is some

shared features between ME/CFS and fibromyalgia. At

present, a donor with fibromyalgia (which is considered

to be a musculoskeletal disorder) can be accepted as long

as they were well at the time of donation and do not

have any additional features of ME/CFS

blood.co.uk/pdf/publication... (Please note PDF so please copy & paste link into brower to view)

I noted other countries have asked people with Fibromyalgia to stop giving blood, Australia for one.

Here if you have Fibromyalgia you need to state this & they will ask you further questions to assess eligibility according to blood.co.uk

Fibromyalgia

Sorry, but we need to have more information for us to answer your enquiry. To give you an answer we will need to speak to you. Please call our Donor Helpline on 0300 123 23 23, Monday to Friday, 8am to 7pm as we may need to transfer you to the Referral Team who can deal with more complex issues

my.blood.co.uk/Knowledgebase

If you would like to give blood today or at anytime, please ring for more information before visiting any local centre to give blood as is stated above Blood donation can only be accepted as long you are well at time of donation and do not have any additional features of ME/CFS

What are your own personal thoughts on this subject?

I would in my beliefs advocate giving blood in a general sense however should we give blood having Fibro in your own opinion? Do you think we need to set a poll to find out general opinion?

Interesting debate for World Donors Day

Please Note this may be shared on Facebook and/or Twitter

Best Wishes

Emma

FibroAction Administrator

[RockRose]

Thanks for sharing this thought-provoking post, Mdaisy.

I used to gladly and willingly give blood, but since having severe CFS, I felt intuitively this wasn't a good idea, even before the restrictions came in, as I'd hate the thought of anyone vulnerable suffering as a result of being given blood which possibly may contaminate rather than help.

I still have faith that I may recover and restore my health in future...and then, I would then gladly give blood again, if I would be considered 'cured' and therefore no longer on the restricted list, yet of course, this may not be permitted, so I'm watching this space.

Kindest wishes, RockRose

[Mdaisy in reply to RockRose]

Interesting as I wonder how the symptoms of ME/CFS/SEID are assessed and by whom as to whether someone with Fibromyalgia can give Blood or not. I think I read that both groups can donate organs still within the PDF information 2011.

I think on the whole given this information maybe we need to be partly responsible for yourself in this decision as I know I am not 'well enough' and believe I have signs of CFS/ME/SEID so wouldn't consider donating.

I think many of us would like to give blood but whether we should consider it or not might be up to the individual & further assessment as it stands at the moment.

Thank You for your comment & views RockRose

[Hidden]

I would love to give blood but I have been ruled out as I received blood in 1988. Who would have thought that they wouldn't let me give blood any more.

Interesting post though

[Ian123]

Worried about the health effects on the donor when Bell and Streetman research was indicating reduced blood volume in CFS keep donating, CFS is a Somatization no change until the XMRV came along from Judy Mikovits research.

[TheAuthor]

Thank you for sharing, very interesting x x

[Shazzzy]

I believe fibro IS a disease of the central nervous system. I have debilitating fatigue as in cfs. I would worry about the effect donating blood would have on my health. I would worry about the effect it may have on the recipient. For these reasons I will not donate blood. I have always wanted to donate any useful part of my body when dead, but this is naking me think, would I be passing on further illness to someone ? There are many professionals who believe fibro starts in the mitochondria, this also makes me think I would quite possibly be passing the disease to soneone else, someone who already in the extremely vulnerable position of organ failure. Any thoughts ?

[Ian123 in reply to Shazzzy]

The ban on all conditions of unknown cause (aetiology) in another condition with central nervous system malfunction, MS has these restrictions on donating mstrust.org.uk/atoz/givingb...

[Shazzzy]

Thanks for that ian, in this case I will proceed witth donorship and leave recipient to decide, life us precious.