Canada Bans Blood Donations From People With History of CFS/ME

Canada Bans Blood Donations From People With History of Chronic Fatigue Syndrome

Canada's national blood service has announced that from next month it will ban blood donations from people with a medical history of chronic fatigue syndrome (ME) as a precautionary measure. It is the first country in the world to do so.

"Canadian Blood Services takes the safety of the blood supply very seriously" said Dana Devine , the agency's vice president of medical, scientific, and research affairs. "Until recently Canadian Blood Services has accepted blood donations from donors who report a history of [chronic fatigue syndrome] but are now well. Donors who are not well may not donate blood".

Dr Devine cited a report in Science last October (2009;326:585-9, doi:10.1126/science.1179052) suggesting a link between the syndrome and the presence of a retrovirus, the xenotropic leukaemia virus related virus (XMRV).

The study, which looked at peripheral blood mononuclear cells from patients with chronic fatigue syndrome, identified DNA from XMRV in 68 of 101 patients (67%) but in only 8 of 218 (3.7%) healthy control patients. Cell culture experiments showed that patient derived XMRV is infectious and that both cell associated and cell free transmission of the virus are possible.

Secondary viral infections were established in uninfected primary lympocytes and indicator cell lines after their exposure to activated peripheral blood mononuclear cells, B cells, T cells, or plasma derived from patients with the syndrome, prompting the researchers to suggest that XMRV may be a contributing factor i the pathogenesis of chronic fatigue syndrome.

Dr Devine explained " These researchers could show that the virus from patient blood samples was able to infect cell lines in the laboratory. What remains unknown was whether this virus is actually the cause of [chronic fatigue syndrome] in these patients.

"It was also unclear from this study whether there was actually live virus in healthy people as these researchers were only able to demonstrate a piece of the XMRV genome called "gag" but not other parts of the virus that one would expect to find if the virus was intact and capable of being infectious. So, important questions remained unanswered, particularly with respect to risk to the blood system.

"Given the lack of clarity around XMRV, we are changing the way we manage donors such that any donor who has a medical history of [the syndrome] will be indefinitely deferred from donating blood". She added that the agency preferred to err on the side of caution in a bid to guarantee the safety of blood supply.

"Until XMRV is better understood and more is known about the role the virus plays in [chronic fatigue] and related illnesses we will safeguard the blood supply through this deferral" Dr Devine said. "Once we understand more about this issue, we will revisit this decision to determine whether the indefinite deferral is still warranted".

Studies conducted in early 2010 in the United Kingdom and in the Netherlands were unable to confirm the findings of the Science study, she noted (BMJ 2010;340:c1033, doi:10.1136/bmj.c1033).

Health officials in the United States are also investigating the association between XMRV and chronic fatigue syndrome and its potential significance for the blood supply.

{Barbara Kermode-Scott, Calgary, Alberta}

Letter To Northern Health Board

This is a short letter, written by a member of the NI MEA to the Chief Executive of the Northern Health Board after the disclosure that so far only the Belfast Board has responded to a request by the Chair of the NI ME Working Group at Stormont for all 5 Boards to submit their plans for providing proper services for ME patients throughout Northern Ireland.

" Dear Mr S McConnell

Following a meeting in Castle Buildings, Stormont, on 28th October 2009, the HSC Board and Public Health Agency were tasked with looking at how the needs of ME/CFS patients might be better addressed.

Subsequent to this meeting, and in January this year, the HSC Board wrote to your Board asking you to submit plans for their consideration, and setting out how the Trusts will deliver services to patients with this disease.

Only the Belfast Trust has had the courtesy to reply to this; the other four Trusts have yet to reply. I would suggest there has been ample time to submit your plans.

As one who suffers from this debilitating disease, I would request you expedite this reply and inform me how soon the HSC will have sight of your plans.

Iain Wylie, 3rd April 2010."

As of today's date, Iain has not yet had an acknowledgement from the Northern Board.

Update on CFS Clinic at Belfast City Hospital

NI MEA Working Group:

BCH ME/CFS Clinic Relocated From

Psychiatric Medicine to General Medicine

NI MEA 19th March 2010

The first meeting of the Northern Ireland ME Working Group was held in Castle Buildings, Stomont, on 28th October 2009. (Full reports have already been included on this blog). Following that meeting, Dr Paul Darragh and Anne Hillis at the HSC Board and Public Health Agency, were tasked with looking at how the needs of ME/CFS patients might better be addressed.

In mid January 2010 the HSC Board wrote to all five Health Trusts in Northern Ireland, asking them to submit plans fort he Board's consideration, setting out how Trusts will deliver services to patients with ME/CFS.

In early March 2010 the Belfast Trust responded, to the effect that they have "identified Dr Welby Henry, Consultant Physician in Diabetes and Endocrinology, with an interest in CFS/ME conditions, to be the principal clinical lead in the diagnosis and management of this condition. He will be supported by Jayne Perkes," the Senior Occupational Therapist already in post at the Belfast City Hospital clinic.

* So far there has been no response from the other four Trusts which cater for patients outside Belfast.

The NI MEA views developments at Belfast City Hospital as positive. Dr Henry has long experience in managing ME/CFS patients, and had already an early role in the initial establishment of the BCH clinic. We would like to see this clinic develop and take on additional staff, including nurses and social workers. Currently it caters only for adult ambulant patients. Obviously it should also offer services to children and adolescents, the severely-affected housebound, and the undiagnosed and newly-diagnosed.

Given that the Belfast clinic actually collapsed last July, the road ahead for it will be extremely challenging. But it has been resurrected on a favourable footing, and the NI MEA hopes these conditions will continue to prevail.

So far as we know, GPs in Belfast have not yet been advised the the BCH clinic is back in business. Nor do we know whether the Belfast Clinic will accept referrals from the other Trusts. In April 2007 the previous head of the clinic concluded that the other Trusts were making no efforts to cater for ME patients, and from that point he began to refuse their referrals. The current BCH management may continue to take the same view.

That would be bad news for ME patients from outside Belfast, who would then continue to have no access to specialist care. The other four Trusts would need to come up with satisfactory responses, and soon.

In September 2009 one of the reasons given by BCH for the closure of their clinic was lack of demand from Belfast patients. Insufficient numbers may have been due to the then location of the clinic within psychiatric medicine, a siting which large numbers of ME patients considered to be inappropriate and repellent.

Although GPs may not yet have received formal notification, the official position is that the BCH clinic has begun to function again. Individual patients should exercise their own judgment on where, when and how they want to be treated.

But if patients were to contact their GPs expressing their clinical needs, that might then result in increased referrals to the newly-rejuvenated Belfast Clinic. The NI MEA does not want a return to the situation where hospital managers can say there is " no demand". There is a vast amount of unmet need among ME patients in Northern Ireland, and NHS services will not expand unless that need is clearly spelled out to all concerned.

The NI MEA Delegation

The Chair, Ken Hull, Horace Reid, and Mrs Jo Calder (the NI Administrator), are the core members of the NI MEA delegation on the NI ME Working Group.

The Administrator has recently contacted Mr David Galloway, Chair of the NI ME Working Group, in relation to scheduling another meeting, but this cannot take place until responses have come in from the Trusts.

In some ways we seem to have come full circle regarding the CFS Service at the BCH! The NI MEA was first contacted by Dr Welby Henry on 1st April 1998, informing us that a new Chronic Fatigue Service had been set up within the Occupational Therapy Depatment and included a copy of the memo to "GPs and any other doctors interested in making CFS referrals".