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".

Belfast Working Group: Basket Weaving & Soft Toys.

After decades of near-paralysis in the care of ME patients in Ulster, the DHSSPS has moved with lightning speed to set up a new Northern Ireland Working Group for ME. This left patient groups scrambling to nominate representatives in a short space of time. It was not easy to secure nominees, particularly from the counties. Even travelling to Belfast, never mind surviving a long meeting, is an impossible challenge for most patients. The resultant spread of patient representation is therefore not perfect, and inevitably there will be complaints. Counties Armagh and Fermanagh for example, are not represented. But patient groups did the best they could in the time available, and they have managed to field a robust team on the Working Group.

NI MEA have secured representation from counties Derry, Tyrone, Antrim and Down. So that no single county representative is overloaded, attendance at meetings will be rotated. Jo Calder from NI MEA is purring with satisfaction that the Working Group is up and running at last. After years of patient lobbying at Stormont, she has finally got the politicians to listen. In concert with all other patient representatives present, she delivered an uncompromising message to the Working Group - No GET. No CBT. No psychiatric management.

Derek Peters from the NI Campaign for ME/CFS Healthcare has close links with MERUK, the research group run by Neil Abbot and Vance Spence in Dundee. Derek gave a substantial presentation to the Working Group, emphasising that ME patients wanted effective treatments to address what is a physical disease, and that adequate investment in research would be the only way to find a cure. Derek was accompanied by Joan Robinson, who read some compelling patient histories. The NHS was not making adequate provision, she said, and one result was that too many ME patients were being fleeced by charlatans in the complementary sector. Antoinette Christie and her sister Jeanette Marley (familyfights4me) are very experienced advocates, and well qualified to speak on behalf of the severely affected, children, adolescents, and their families.

The final part of the Working Group meeting on 28th October focused on the future of the CFS Clinic at Belfast City Hospital. NI MEA received mixed reports about this clinic before it was effectively closed in July 2009. There had been consistent complaints. But there were no gripes about the Senior Occupational Therapist who did most of the clinic's work. On the contrary, she was well-liked by her ME patients. On 12th October the Minister told the Assembly that the Belfast Clinic had only accepted 16 patients during 2009. He said that Jayne Perkes the Senior OT was continuing to treat the existing intake. He conceded that the figure of 16 clients was not a fair reflection of demand as identified by patient groups. There is a range of possible explanations for this low number. It represented the intake for 6 months or less; only Belfast patients were eligible for referral; not all referrals were accepted or judged suitable for management; and many patients refused to be referred to a service headed by a psychiatrist, located in a psychiatric unit.

At the Working Group Horace Reid insisted that the future of the Senior Occupational Therapist in post be determined there and then. When this Group goes looking for staff to man the new ME clinics, you will discover that there aren't any. If you delay for six months, you will find that Jayne Perkes the Senior OT will have been diverted into another speciality, and all the skills she has built up over the years will have gone to waste. If you allow that situation to develop, you will be starting from zero level with the new clinics. Jayne is the obvious foundation stone upon which a new service will be built.

While Dr. Scott was the gatekeeper for the Belfast CFS clinic, it was the Senior OT who was responsible for most of the patient management. She is still in post, she is still funded, and there are plenty of patients who need to see her. No new patients have been referred since July 09, and a backlog is building up. Surely some mechanism can be devised for her to receive GP referrals. After all according to NICE, GPs are supposed to be capable of diagnosing ME. (Antoinette interjected here, expressing well-founded doubts that they could).

Line managers from the Belfast Trust were present at the Working Group meeting. They readily gave assurances that the Senior OT would remain in post, and her skills would be preserved. Reintroducing referrals from GPs would need to be done carefully when patients from all over Northern Ireland became eligible, there would be a danger that Jayne would be overwhelmed. I'd be quite pleased if she were overwhelmed, said Horace. That might prompt you to employ more staff.

There was then a short debate on the merits of occupational therapy versus physiotherapy. Derek Peters is no fan of OTs: Basket weaving and soft toys, he snorted dismissively. Jo Calder was adamant that any new ME clinic should not be headed by a physiotherapist; inevitably that would provide a route to introduce Graded Exercise Therapy by the back door.

An OT Manager was present, and defended her speciality: Actually we undertake quite challenging projects, such as Condition Management Programmes for the DWP said she, brightly. (Most ME patients are now being refused the higher rate of ESA by the DWP. Not sure it is helpful for OTs to associate themselves with this draconian new regime). Antoinette said she had negative experiences with OTs in the Community. Horace confirmed that a number of mothers had made similar complaints to NI MEA. (One Senior OT had refused to recommend a stair lift for one severely affected teen. The girl was then reduced to crawling upstairs on hands and knees).

Horace referred to official guidance such as paragraph 1.4.4.1 in the NICE CFS/ME guidelines, (p.42). For people with moderate or severe CFS/ME, providing or recommending equipment and adaptations (such as a wheelchair, blue badge or stairlift) should be considered as part of an overall management plan, taking into account the risks and benefits for the individual patient. This may help them to maintain their independence and improve their quality of life. Horace asked: There are regular complaints that OTs in the Community are not providing these aids. Could it be that individual OTs regard ME patients as malingerers? Could it be that personal prejudice is blinding them to official guidance??

The Chairman David Galloway asked whether NI MEA's endorsement of Jayne Perkes implied an endorsement of Occupational Therapy? Horace said it was an endorsement of an individual who was trusted by her patients; it didn't imply approval of any particular NHS speciality. Mr. Galloway repeated that he envisaged Jayne playing a lead role in the proposed new service; for instance she would certainly be involved in the training of new members of NHS staff. There are an estimated 6700 ME patients in Northern Ireland, and much of the responsibility for them will now devolve on one single part-time NHS employee. Jayne Perkes has been carrying that kind of load for some years, and luckily has survived so far. Let us hope she can continue to.

H.
More when I get the energy.

NB. These e-mail bulletins should not to be regarded as official minutes. They are edited highlights, recorded from memory by Horace. These and future blogs are posted at:

http://nimea-ni.blogspot.com

/

Belfast Working Group: A Shoestring Affair.

“The Minister and his civil servants are resorting to the art of illusion, and are desperately trying to conjure imaginary ME services out of thin air.”

First Meeting of the Northern Ireland Working Group on ME, 28th October 2009.

The Northern Ireland ME Working Group is going to be a shoestring affair. It will not be the Belfast equivalent of the English CMO’s Working Group in 2002, and it will not be comparable to ongoing efforts in Scotland to produce a Statement of Best Practice.

The Working Group Chairman (David Galloway, Director of Secondary Services DHSSPSNI) opened proceedings by announcing that the primary intention was to set up pathways to guide ME patients to existing services in Northern Ireland. This drew a tart response from Horace Reid, who said that currently there were NO specialist services for ME patients in Ulster, and than any new pathways will simply lead to blind alleys. The Chairman seemed to accept this point.

In his statement to the Northern Ireland Assembly on Monday 12 October 2009, the Health Minister tossed a number of mutually incompatible proposals into the air, and we are now waiting to see where they land. Among the phrases he used were: “We are guided by the NICE guidelines.” “We are looking at best practice in other areas.” “In common with NICE guidelines, a neurology-based service rather than a psychology-based service.” “We will take account of the neurology review, which is coming forward, and the physical and sensory disability strategy, the consultation on which will be put out shortly.” “No doubt we can tease out whether to have one ME centre in Northern Ireland or use the services that are available throughout the health and social care framework to create a system in Northern Ireland that is signposted by GPs.”
Take out of that what you may.
The NICE CFS/ME guidelines of 2007 became operative in Ulster in February 2008. The NI CMO instructed the health trusts to implement them, and invited their proposals. A deafening silence ensued, and absolutely nothing has happened since. Except that in July 2009 the Belfast Trust closed the only existing specialist ME facility that we had in Northern Ireland.
The Health Minister is embarrassed that 7000 ME patients are being largely neglected by his Department, and tells fibs in the Assembly to disguise this failure: “Mr McCarthy says that ME patients have nowhere to go. That is not true. Patients have the whole health and social care system to address their needs, and it does so.” ME patients here know this is pure fiction.
With recession, severe budget cuts are now affecting the NHS in Ulster. In September for instance, 150 acute beds in the two main Belfast teaching hospitals came under threat. It would initially cost £0.7m if the DHSSPS thought of implementing the NICE CFS/ME guidelines in Ulster, and that kind of money will be hard to find. So the Minister and his civil servants are resorting to the art of illusion, and are desperately trying to conjure imaginary ME services out of thin air.
At the Working Group’s first meeting Horace got to the point pretty quickly: “The needs of ME patients have been identified long ago by committees in Canada, Australia, England and Scotland. There is no need to re-invent the ME wheel in Belfast, with prolonged deliberations. The proceedings of this NI Working Group should be time-limited. The important thing is implementation. The only thing that will impress our patients will be results on the ground. We have a very large number of patients who are being neglected, we have no budget, and I could count on the fingers of one hand the number of NHS staff in Ulster who know anything about the management of ME. These are the unpalatable realities, and the challenges for this Working Group”.
A wide range of clinical disciplines were represented at the meeting by senior NHS personnel, and Antoinette Christie and her sister Jeanette left them in no doubt of the consequences of government failure to invest in the diagnosis and management of ME. She and Jeanette are seasoned advocates, and they are a formidable double act. Antoinette has two teens with ME, one of them very severely affected. As a mother she is carrying a load which would destroy most families, but she remains amazingly full of fight.
NIMEA knows of many other mothers in the same situation, who dread ham-fisted intervention by the NHS and Social Services, and who have leaned it is safer to keep your head down and not attract attention. But not Antoinette. She knows the NHS is failing her, and she actively carries the war to the enemy. She and Jeanette outlined at length how it had taken fully 11 years to get a diagnosis for one of her boys. This was very powerful original testimony, coming from an ME mother right in the firing line. On Wednesday last it was a vital part of the new Working Group’s proceedings. What she had to say wasn’t news to the patients present, but it probably came as a shock to the civil servants and senior medics. I hope it did them some good.
Sooner or later Antoinette was going to become a target for the Child Protection squad, and eventually that happened when she asked for home tuition.
Horace to Antoinette: “You asked for help, and instead of helping they made trouble for you.” Antoinette: “Yes.”
Horace to Chairman: “NIMEA can tell you of other instances where ME mothers have been subjected to the same kind of ‘Blame the Victim’ tactics by DHSSPS employees.”
Towards the end of the meeting only one senior doctor contributed to the discussion with the patients. Speaking very briefly, he said that the NICE guidelines were a tool to bring about improvements for ME patients in Northern Ireland.
Seizing on this, Horace quoted from page 305 of the guidelines:
Key principles of care for people with severe CFS/ME.
“Management of severe CFS/ME is difficult and complex, and healthcare professionals should recognise that specialist expertise is needed when planning
and providing care. Diagnosis, investigations, management and follow-up care for people with severe CFS/ME should be supervised or supported by a specialist in CFS/ME. People with severe CFS/ME may need to use community services at times. These services may include nursing, occupational therapy, dietetics, respite care, psychology and physiotherapy. The input of different professionals should be coordinated by a named professional.”

This was the level of service Antoinette and other ME mothers should be receiving, but instead they are left abandoned and forced to cope on their own. If the NHS in Northern Ireland intends to implement in full the NICE recommendations for severely-affected patients, then it has a mountain to climb, said Horace.

The next meeting of the Working Group will be in the New Year. By that time the different Health Trusts are expected to come up with proposals to establish new services for ME patients in Ulster.

More soon.

Belfast Working Group: Them and Us.
“Our patients have never been given what they need and want. We have always been fobbed off with whatever it has profited the psychiatrists to force upon us.”
First Meeting of the Northern Ireland Working Group on ME, 28/10/09.
When NIMEA met the Health Minister on 28th September we were surprised and pleased by his plans. There was to be an ME Working Group, patients would be invited to sit on it, and a new clinic was contemplated, in a neurological context.
In England NICE has operated a successful strategy of divide-and-rule with the ME charities. One patient group had a very cosy relationship with the GDG, to the exclusion of others, and an even cosier relationship with the NICE legal team during the Judicial Review proceedings. The same tactics of favouritism are obviously in operation within the CCRNC also.
But thankfully there is no sign of the DHSSPS resorting to the same kind of Machiavellian strategies in Ulster. All patient groups in Belfast and the counties who wanted to be represented on the NI Working Group, found themselves knocking on an open door. All shades of opinion have been given a welcome. What should happen, has happened.
At the first meeting the patients were given their full say. As a matter of fact, during the 90 minutes allocated it was difficult for anyone else to get a word in. There were ten civil servants and senior NHS personnel present, and they were exposed to the full blast of decades of pent-up patient frustration.
The Chairman was David Galloway, DHSSPS Director of Secondary Services, and he was obviously following his Minister’s instructions to properly consult with patient Stakeholders. Mind you, such was the volume of patient input that he had to abandon half the meeting’s planned agenda.
Among the medics the Neurologists were represented, as promised. The designations of others present are still causing come puzzlement: “Assistant Director Physical & Sensory Directorate”, “Programme Planner for the elderly and physically disabled”, “Older People's Services”, for example. But there wasn’t a psychiatrist in sight – hooray!
At a late stage we discovered that the medics had held a “pre-meeting” before our arrival. Didn’t want to talk in front of the children, d’you see? That was a bit disconcerting. Considering none of them had any specialist clinical expertise in ME, what could they usefully discuss in our absence?
And at our meeting there was very little interaction between NHS personnel and we patients. A few responded only very briefly, when prodded by the Chair. They were hearing NHS horror stories from patients on every side of the room, but this produced little apparent reaction.
In any other medical specialty, I imagine that in such a meeting there would be unanimity of purpose and brisk engagement between clinicians and clients. But in the UK it has not been like that as regards ME. Our patients have never been given what they need and want. We have always been fobbed off with whatever it has profited the psychiatrists to force upon us.
In Belfast it was not possible to divine what the medics were thinking. That was a pity. This was a rare opportunity for some much-needed doctor-patient rapprochement, and it hasn’t yet materialised.
Medical care shouldn’t be like this. It shouldn’t be a case of “Them and Us.” I hope we can do better. I hope we can persuade them to see it our way.
More later.
H.

The Corridors of Power.
First Meeting of the Northern Ireland Working Group on ME, 28/10/09.
Having been admitted to the corridors of power - for once - ME patients in Ulster did not miss the opportunity to have their say.
NIMEA was determined that patients distant from Belfast should be represented. As a NIMEA Group Contact, Shelly Gilfillan made a 180-mile round trip from the farthest reaches of Co. Tyrone (4 hours driving in total), to speak for ME patients west of the Bann.
She had quite an impact on proceedings:
Horace: You drove yourself from Tyrone this morning?
Shelley: Yes.
H: How long will it take you to recover, after today?
S: A week.
H: And the same would apply to all ME patients in Co. Tyrone if they had to travel to Belfast to access specialist ME care?
S: Yes.
H: You and your son both have ME?
S: Yes. My son is severely affected and bedbound.
H: How will you manage to look after him this week?
S: Fortunately my husband has a day off work tomorrow.
By this time the Chairman of the Working Group had got the message, and was hastily assuring Shelley that the proposed new Belfast ME Clinic would have an outreach centre in Co. Tyrone.
Shelley: When will we have the outreach clinic?
Chairman: It’s under active consideration.
S: Who are you going to send?
C; (Stammering a bit). Staff from Belfast.
S: But you said you hadn’t got any staff yet.
C. (Flustered now) Well, we will have to train them.
Having got properly into her stride, Shelley then began a demolition job on the Examining Medical Practitioner who came to assess her son for DLA …

For the record, the Corridors of Power are a collection of Portacabins which have seen better days, with a well-fed resident white tabby. The civil servants were a friendly bunch. The DHSSPS Director of Secondary Services, who chairs the Group, handed out tea and biscuits in person. AND he collected the empty cups from the tables afterwards. The same couldn’t be said for most of the NHS professionals present, who were rather stand-offish. Or maybe they were just paralysed with guilt.
More when I emerge from boom-and-bust.
H.