nimea

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

2010-04-15T04:59:00.001-07:00

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

2010-04-13T02:09:00.000-07:00

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

2010-03-24T03:20:00.000-07:00

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".

2009-11-11T01:18:00.000-08:00

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

2009-11-02T05:25:00.002-08:00

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.

2009-11-02T05:25:00.001-08:00

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.

2009-11-02T05:23:00.000-08:00

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.

NI ME working Group

2009-11-02T02:16:00.000-08:00

The Northern Ireland ME Association finally secured a long sought-after meeting with the Health Minister, Mr Michael McGimpsey, in September this year. The outcome of this meeting was the establishment of a Working Group on ME, and this initial meeting took place at Castle Buildings, Stormont in October.

The Group is made up of DHSS&PS, Health Board & Health Trust Officials; the NI MEA delegates were Ken Hull (Chair, NI MEA) Mrs Jo Calder (NI Administrator), Mrs Shelley Gilfillan (Network Support) and Horace Reid. There were also a few other ME representatives who attended this initial meeting.

The discussion lasted almost 2 hours, and the patient representatives covered such a wide remit that part of the set Agenda has to be abandoned! Areas covered included the desperate need for a Specialist Facility, a Paediatric Specialist Facility, satellite clinics throughout the Province, Medical Students to receive training in ME, GPs to be more aware of the illness, better understanding with Benefits and Welfare Agencies,, schools & colleges and employers. It was emphasised that CBT or GET were NOT accepable forms of treatment for ME, and that any future Clinic/Facility must not be sited within Psychiatry. The NI MEA stated that it felt any such Clinic should be headed by a Physician.

The next meeting is due to take place in the New Year. The full Report of the October meeting will be put on the NI MEA website, and NI MEA members will also have details in the NI MEA Newsletter. Any further information will also be posted on the website as and when they take place. Watch this space!!!

Horace Reid is writing a series of blogs, which are also going to be included here. They are not, of course, formal minutes or notes, but personal observations by Horace.

The Northern Ireland ME Association - THE FACTS

2008-04-16T01:13:00.000-07:00

The following are the TRUE facts about the Northern Ireland ME Association, its work, the services it offers, and its ethos.

The NI MEA runs an Administration Office in Belfast, and is staffed on a full time basis by the NI Administrator. She is the only employee.

The NI Administrator has had ME, and understands the symptoms, the problems experienced by patients, the illness, the misconceptions that still exist, and the controversy surrounding the illness

The NI MEA has a Management Committee, the vast majority of whom are, or have been, ME patients themselves; they are unpaid volunteers who give freely of their time to help others with ME - sometimes to the detriment of their own health.

The Association has been in existence for 20 years, and therefore is not a new organisation, and is fully cognizant of the lack of facilities, care, treatment and management that still exists within the NHS. It is also fully aware of the degrees of severity that can happen with ME, and has seen at first hand the plight of severely ill patients.

The NI MEA has always maintained that ME is a debilitating, physical illness - this is clearly to be found in our Mission Statement on the Homepage of our website:- www.nimea.org and elsewhere on this blogspot.

The NI MEA has consistently made it clear that is does not advocate either Cognitive Behavioural Therapy (CBT) or Graded Exercise Therapy (GET), again stated on the website and on this blog.

The NI MEA accepts the only form of "treatment management" that it would advocate is PACING - that applies now, has in the past, and will do in the future until a cure can be found.

The NI MEA calls itself the Northern Ireland ME Association - not the NI ME/CFS Association, or the NI CFS/ME Association. The simple reason for this is that it did not, and will not adopt the term CFS, because it feels that by doing this it lends credibility to the "watered down" name for this awful illness. Neither does the NI MEA see itself as an "umbrella" organisation - we deal with ME only. We are, of course, also fully aware that many within the Medical profession still use the term CFS when diagnosing this illness - however the NI MEA does not feel it has to go along with this; Chronic Fatigue is only one of the myriad of symptoms, and therefore does not fully impact the true misery involved with this illness.

The NI MEA does not give false hope of a cure - respected researchers, specialists and clinicians have already stated that, as yet, there is NO KNOWN PROVEN CURE for ME. This does NOT mean, of course that there is not help, certain treatments and management for the illness.

The NI MEA does not advocate any form of particular treatment - either mainstream or alternative. We have found that some of these "treatments" can be counter-productive, disappointing for the patient, and in a very few instances nothing short of a scam. The Association feels that patients are intelligent enough to recognise these.

The NI MEA has had contact with the CFS Service at Belfast City Hospital - surely it is better to have dialogue, make our views and concerns known in an adult and mature way, rather than agitate and antagonise - we feel it is better to act in a responsible manner, with some sort of credibility; The CFS Service is also fully aware of the NI MEA views on CBT and GET, and that the only treatment that the NI MEA supports is PACING.

The NI MEA supports and, where finances permit, contributes to the on-going biomedical research taking place in the UK. It also has regular contact with MERUK - formally MERGE.

The NI MEA has made it patently clear that it feels funding should be channelled into biomedical research and not psychological. This view is made clear on our website and elsewhere on this blog.

The NI MEA has spent many years campaigning for even 1 Full Specialist Facility for ME patients. This Campaign continues despite rejections and disappointments during those years.

The NI MEA is also campaigning for a proper Adolescent Facility in addition to an Adult Facility.

The NI MEA is fully aware of just how much still has to be achieved regarding this illness, the total lack of provision, the scepticism still prevalent in some circles, the total lack of NHS funding and the need for immediate action. To this end the NI MEA has met recently with the Health Committee at Stormont, the Chief Medical Officer for Northern Ireland, and has been trying, without success to date, in getting a meeting with ANY of the Health Ministers throughout the years. However, the NI MEA continues to actively pursue all concerned.

The NI MEA does not blame others for the NHS refusal to fund ME Services, and the current Health Minister for not giving serious attention to ME.

The NI MEA now receives some Core Funding from the Department of Health, Social Services & Public Safety to run the Administration Office. This came about after many years hard work and ceaseless attempts to obtain this funding. Because of this, we can now pass on the benefits of funding to our members - see below.*

There are no "strings attached" to the funding - it is given on merit for the work being undertaken by the NI MEA.

Because of the Core Funding from the DHSS&PS the NI MEA can now offer FREE membership for life *

The NI MEA offers all its services FREE *

FREE Services include :-

Full access to the NI MEA Medical Advisor (Consultant Physician who ran an ME Clinic in one of London's leading Hospitals for many years)
Full access to the NI MEA Benefits Advisor (a local expert in all of the Benefits systems)
Full access to the NI MEA Paediatric Advisor (a local Consultant Paediatrician)
Full access to the NI MEA Education Advisor (an expert in Special Educational Needs, and Statementing, and is a Tutor for the OU in Teacher Training)
Benefits Application Packs
Benefits Appeals Packs
Specialist Medical Packs for GPs, Consultants etc
Specialist Education Packs for Schools and colleges
Support Networks throughout NI
Children & Teens Support Network throughout NI
Young Adults Support Network throughout NI
Parents Support Network throughout NI
Quarterly Newsletter
Extensive Range Information Leaflets and Brochures
Booklets for Children and Teens

These services cost the ME patient nothing - all they need to do is contact the NI MEA by:-
Information Line (24 hours) Tel: (028) 90 439831 (Leave your name and address)
email: jo@nimea.org
website: www.nimea.org and fill in the on-line Enquiry application.

These are the real facts about the NI MEA. We are here to help where we can, when we can and in whatever way we can.

The Northern Ireland ME Association - HERE FOR ME AND YOU

FULL Blog reply from NI MEA to Ian McIlroy on UTV Life blog

2008-04-15T08:17:00.000-07:00

The following is the FULL reply which the NI MEA submitted to the UTV LIfe blog on Tuesday 15th April in answer to the post made by Ian McIlroy. Somehow, this full version, which had been posted by the NI Administrator, did not appear on the blog as it had been orginally submitted.

In his long post, Ian McIlroy forgot to mention that he is a member of a rival ME charity, with an axe to grind, and something to gain from knocking NI MEA.

He is aggrieved that NI MEA receives DOH funding, and his organization does not. Funding is available to those who lobby for it. NI MEA lobbied at Government Buildings once in October and twice in November, including briefings to the CMO and the Assembly Health Committee. When was your organization last at Stormont, Ian?

Ian is angry and frustrated that NI MEA would not advertise on behalf of Dr. Derek Enlander. Dr. Enlander is a distinguished Ulsterman based at a famous New York Hospital. As a research lecturer, he is most welcome. However while he is in Belfast for a short period, Dr. Enlander
proposes to see patients. Some questions arise: does he intend to actually treat patients; if so how will he supervise their continuing care from 3000 miles away; and will his own regime conflict with a patient’s current NHS treatment? With such uncertainties, there can be no immediate endorsement from NI MEA for any visiting doctor.

Ian is upset that we invited a psychiatrist to a doctors’ conference at Lagan Valley Island last year. Now let’s get real here. He’s the consultant in charge of the Belfast ME clinic. Do you think the doctors in the audience wouldn’t have missed him if he had been excluded? Fine start to a conference that would have been. Our speakers included Drs. Willie Weir and Jonathan Kerr, both from London, and both leading opponents of the psychiatric model of ME.

But whoops! - Ian forgot to mention those details also.

NIMEA committee members are all patients, all volunteers, and are all ill. Our work is always achieved at the cost of their own health.

When there is anything to be done, there is always a shortage of volunteers to assist. Despite that, our committee members do much good work. After all the work is done, those who were previously “too tired” to help, often receive a burst of energy, and direct venomous criticism at those colleagues who did make the effort. Ian has been rather inactive on the ME front, until yesterday. But now he’s in line for a black belt - as an armchair critic.

Jo Calder.

Administrator,

NIMEA.

Reply Posted By NI MEA on UTV LIfe Blogpage

2008-04-11T08:03:00.000-07:00

This is the reply I put on the UTV Life Blogpage this afternoon on behalf of the NI MEA.

Ken Hull did not advocate CBT and GET as treatments for ME, during his UTV interview. Those who want the facts will find a transcript of the programme at http://nimea-ni.blogspot.com/.

NIMEA opposed psychiatric management of ME in its submission to the Belfast CMO in November, and were among the first of the UK ME charities to reject the main NICE recommendations, (see the NIMEA blog). But some of our critics aren’t really interested in facts.

Ulster ME charities who attack the BCH CFS clinic are hypocritical. All of them have members who attend that same clinic in large numbers. In fact, there is always a waiting list. NIMEA itself has members who are strongly opposed to the siting of the clinic within Windsor House, some who don’t mind, and some who fall between.

We are a mature organization; we respect diversity of opinion; and we responsibly reflect the full spectrum of views within our membership. The decision to attend, or not to attend the BCH clinic is one for the patient. NIMEA fully respect and defend the rights of individual patients to make their choices. There are other advocates who seem to want to impose their own preferences on the entire ME community.

We do receive complaints about the BCH clinic, but none about the Senior Occupational Therapist in charge of treatment. Many NIMEA patient members have warm praise for her. We have independent evidence that friendliness and mutual respect are the hallmarks of her relationship with her ME clients. She is the only NHS-funded specialist for ME in Northern Ireland. She is a valuable asset, and we need many more NHS staff like her. She has our full support.

Jo Calder,
Administrator,
NI MEA.

Transcript of ME Article on UTV Life

2008-04-11T01:04:00.000-07:00

Mrs Antoinette Christie (Parent & Carer of a teenage ME patient) and Mr Ken Hull (Chairman, NI MEA) got a 5 minute slot on Ulster Television's "UTV Life" at 5.30PM on Wednesday 9th April 2008.

At times both Antoinette and Ken were indistinct, and the transcriber had to use headphones for the soundtrack. It has been edited for brevity and clarity, punctuation has been added, and repetition deleted. Explanatory notes are added, in brackets.

Transcript.

A Belfast boy hasn't been to school for nearly 5 years. His parents are desperate for help.

A mother whose teenage son has ME, is paying an American doctor to treat him, because she says he's not getting enough medical attention locally.

Antoinette Christie says she's asked the Health Minister to fund biomedical research into the condition, but he's refused.

Letitia's been to meet her.

Letitia "David Christie, who's 15, has suffered from ME for years, and hasn't been to school since he was eleven and a half. He sleeps from 5 in the morning until 5 in the afternoon; and can rarely get out of bed when he is awake. ME, also known as Chronic Fatigue Syndrome, affects the immune and central nervous systems.

"David used to be active. He was a Ju Jitsu champion, and a keen rock climber and Boy Scout. Now his bedroom is his prison, and his mother is at her wit's end".

Antoinette " We're emotionally drained. David doesn't have a life. Today you look outside and see the sun, and David should be out at school. David's just been left, a prisoner in his own wee home".

Letitia "And how do you want ME to be treated by the government here?"

Antoinette " I want it to be funded. The Government's not funding it".

"I have personally written to Michael McGimpsey (The Northern Ireland Minister for Health) and got a reply from him. I've also written to Michael McBride (The Northern Ireland CMO), basically saying that they will not fund biomedical research into ME".

Letitia "How do they treat ME?"

Antionette " Psychiatric"

Letitia "And your contention is it's not a psychiatric condition".

Antoinette " We live with it. We know David didn't just get up one day, suddenly take sick and say 'Right, I'm not going back to school'. anybody who is depressed, doesn't want to do anything. You ask any ME sufferer - they want to do things. They can't - they're physically ill".

Letitia "There's no cure for ME and the effect on families is huge. David's parents haven't had a full night's sleep in 3 years and they can never take holidays. They are so desperate for help that they are paying for David to see an ME specialist from New York. Dr Derek Enlander, who will be in England for a conference in May, is flying to Northern Ireland to see more than a dozen ME sufferers".

"The Department of Health says:

* It provides annual funding to the Northern Ireland ME Association

* No specific funding is allocated for ME sufferers

* Patients have access to a range of services based on a clinical assessment of their need

* A range of treatment and support options are available, and those delivered will depend on the patient's specific symptoms and their severity"

UTV interviewer: "and we are joined now by Ken Hull, who chairs the Northern Ireland ME Association. We've heard a lot over the years about ME, Ken, but it stills seems to be a very misunderstood illness".

Ken Hull " It's still looked upon by some people as "Yuppie Flu", and some patients are accused of malingering. 7000 have it in Northern Ireland, and suffer to different degrees. Some like that young chap are bedbound, and others are just not able to function normally".

"It has not been taken seriously enough until comparatively recently, when the Chief Medical Officer took it on board. It's now looked upon by the National Institute of Clinical Excellence as an important entity".

Frank Mitchell, UTV " Yes it's been taken seriously now. Getting the funding, I suppose, is always the difficulty. The first symptoms of it are.....?"

Ken Hull " "Flu-type symptoms. You can't function; you find it difficult, say, to go upstairs; and difficult to remember things. Really, it's like having a permanent flu. You just can't get over it. You think one day you are better, and the next day you find you are worse. If you over-exert, it sets you back for weeks".

Frank Mitchell "Antoinette spoke about seeing a medical specialist from New York. What will he be able to tell her, or do for David that can't be done here?"

Ken Hull " I wouldn't be sure about that. People will try anything. Some ME patients spend a fortune on possible remedies. It's not often clear what the effects of these are".

"(In the NHS) patients are taught graded exercises, which helps some people, but doesn't help everyone; and there is cognitive therapy".

"I should say there is a clinic in Belfast at the City Hospital, run by an occupational therapist, who does an excellent job. But you find she is only part time".

"Originally patients came to Belfast from as far away as Enniskillen and Omagh. But now she's so snowed under that she can just take local referrals".

Frank Mitchell " Yes, it seems like the poor cousin to so many other illnesses. again, thanks for joining us this evening. Thank you".

Ken Hull "Not at all. Thank you".

Transcript ends.

Just as an observation, perhaps if the NI MEA had been allocated a little more air-time, our Representative could have had the opportunity to expand on several of the issues that had been supplied to UTV prior to the programme being compiled.

And, at no time did the NI MEA advocate either CBT or GET as a preferred option for treatment.

NI MEA Response to UTV Life Slot on ME 9th April 2008.

2008-04-10T01:42:00.000-07:00

This statement was issued to UTV Life early on Tuesday morning, 8th April outlining the views of the NI MEA in relation to biomedical research.

The NI MEA has 3 priorities for ME patients in Northern Ireland:

1.The provision of basis NHS Services

2. Specialist support for the severely ill housebound

3. Research funding to find a cure.

1. Inadequate basic services.

There are 7000 ME patients in NI, but NHS support is totally inadequate, especially west of the Bann. There is a lack of local NHS expertise in ME, and GPs and patients in Ulster are left to struggle on as best they can.

In the whole of Ulster there is only one specially-trained member of staff to cope - an Occupational Therapist based at Belfast City Hospital.

An NHS national plan for ME services was published in the UK in 2007, and had been with Minister McGimpsey since last August. In November he promised NI MEA that he would produce plans for local Ulster services in December 2007. His recommendations have yet to appear.

2. The Severely Ill.

NI MEA has many families left to cope alone with a severely-ill child. Mothers have to provide 24-hour cover, unassisted, which severely disrupts family life.

The NHS strategy published last August stipulated that these families must receive adequate home support from doctors, nurses, Social Security and the Benefits Agency. These services will be expensive, and Minister McGimpsey must start dipping his hand into his pocket

3. Research for a cure.

Unfortunately there is no cure for ME, and no effective treatment. The UK NHS planof 2007 offer only coping strategies for ME patients.

Like all other ME charities in the UK, the NI MEA believes there must be a more active search for a cure. We are disappointed that almost all Government research funding has been directed into psychiatric research, and the only treatments offered are psychological coping strategies.

More focused research is being carried out by a number of Ulster doctors. A cure is being pursued by Dr Derek Enlander (ex Belfast) at Mount Sinai Hospital, New York; Dr Jonathan Kerr (ex Belfast) at St George’s Hospital, London; and by Dr Vance Spence (ex Strabane) at Dundee University.

These Ulster doctors are researching the biological causes of ME, in hopes of finding a cure. Dr Kerr, for instance, has found that ME patients have an abnormal gene profile, which may respond to treatment. Unfortuately these doctors receive no Government funding, and their research is paid for by patients themselves.

NI MEA strongly believes that the focus of NHS treatment and research for ME must shift from the psychological to the biomedical.

NI MEA 8th April 2008"
(Statment ends)

Additional Comments from the NI MEA:

The NI MEA wants research for a cure and of course prefers biomedical.

The potential problem with any Ulster-based research proposals seems to be that most of the world-class Ulster ME researchers already have permanent posts elsewhere.

As biomedical research is currently being done in the UK, the NI MEA feels a more immediate realistic priority for us is to seek basic NHS treatment services on the ground in Northern Ireland.

The NI MEA of course supports biomedical researchers like Vance spence, and NI MEA members contribute to MERUK.

The NI MEA applauds any and all funding raised and fundrasing efforts undertaken in Northern Ireland for biomedical research.

NI MEA Representative to speak on UTV on Wednesday 9th april 2008

2008-04-08T07:51:00.000-07:00

Mr Ken Hull, Chair, Northern Ireland ME Association is due to speak about the work of the local Association, provision for ME patients in the Province, and Biomedical Research. The programme is due to go on air from 5.30PM on Wednesday 9th april 2008.

New Medical Advisor Joins The NI MEA

2007-12-03T03:00:00.000-08:00

Dr William Weir Takes Up the Post Of Medical Advisor To the NI MEA.

Dr William Weir, MB ChB (Dundee); MRCP (UK); FRCP (London); FRCP (Edinburgh) has accepted the post of Medical Advisor to the Association.

Dr Weir recently was one of the key speakers at the NI MEA Medical Conference in September.
He has many years experience in the medical field, and his Post-registration appointments included an SHO in Cardiology & Coronary Care, General Medicine & Endocrinology, Neurology and Chest Medicine. He continued as a Registrar in General Medicine and Nephrology before spending 18 months in Nigeria at a Teaching Hospital. This was followed by a post as a Senior Lecturer at the London School of Hygiene and Tropical Medicine.

Other posts have included Consultant Physician at the Royal Free Hospital and Honorary Senior Lecturer in Infectious Diseases, Honorary Senior Lecturer in Clinical Tropical Medicine and the personal Physician to HH Sheik Zayed, ruler of the United Arab Emirates. Dr Weir's other professional commitments have included Chairman of the Examining Committee of the Diploma of Tropical Medicine of the Royal College of Physicians, Hon Clinical Secretary for the Royal Society of Tropical Medicine & Hygiene. Dr Weir's main clinical interests include Treatment of Severe Malaria; Imported Infections; ME / Chronic Fatigue Syndrome; Diagnosis of Occult forms of TB; Pyrexia of unknown origin and its presentations.

He ran an outpatients clinic for patients with ME/CFS between 1987 and 2000. He was also a member of the Westcare Taskforce on ME/CFS, and lectured at the British Society for the Study of Infection on ME/CFS. His current major Research interests are The Clinical Manifestations of ME/CFS, and Immunological Mechanisms in ME/CFS. Dr Weir has collaborated with the Department of Human Sciences at Brunel University in a number of studies of ME/CFS. He is a Fellow of the Royal College of Physicians of both London and Edinburgh.

As Medical Advisor to the NI MEA Dr Weir will be willing to answer general written enquiries concerning ME, though he will not be dealing with individual medical management, as he feels this is still very much the remit of the patient's GP.

Dr Weir takes up this post with immediate effect, and the NI MEA is delighted to have such a wealth of clinical experience available to its members.

NI MEA Short Presentation to Assembly Health Committee

2007-11-27T02:47:00.000-08:00

Northern Ireland Myalgic Encephalomyelitis (M.E.) Association.

Assembly Health Committee, Monday 26th November 2007.

(Left to right sitting) Rev. Robert Coulter MLA; Mrs Iris Robinson MP, Chair, Assembly Health Committee; Alex Easton MLA

(Left to right standing) Horace Reid, Committee NI MEA; Ken Hull, Chair, NI MEA; John McAllister MLA

The NI MEA Presentation:

1. M.E. has been neglected by the Department of Health in N.I.

D.O.H spending on M.E. 2004-6.

England, £8.3m

N.I., £25K. (0.03% of U.K. total).

England, 13 Specialist centres

N.I. one single O.T.

C.M.O. Reports on M.E.

England & Wales 2002

Scotland 2003

Still no NI Report, 2007

2. M.E. is common

M.E. v M.S.
M.E. is more common than M.S. or breast cancer.
There are 6750 M.E. patients in N.I. (N.I.C.E.)
(M.S. 2445; breast cancer 4935).

3. M.E. is disabling.

Affects adults at 40-50, women more. 25% of patients unable to work. Many are housebound, bed-bound, & dependent. Those still working have 50% productivity loss. (Source: U.S. Centers For Disease Control, 2004).

4. M.E. costs U.K. £6b.

Annual UK cost £6.4b (Benefits, lost earnings, healthcare. (Source: Sheffield Hallam University , '06).

Annual US productivity cost $9B (Source: CDC '04)

28% of male ME patients lose their homes.

5. No Cure For ME

There is no cure for M. E. and no effective treatment. (D.O.H. Belfast, April '07). Only approaches offered by the NHS are coping strategies, treating symptoms, financial support from DWP Benefits (NICE, August '07).

6. Immediate Priorities

A substantial, ring-fenced NHS budget for M.E.

Expand Belfast M.E. clinic

Establish satellite clinics in Craigavon, Omagh, Derry (patients are unable to travel)

Domiciliary Service for housebound patients

Avoid controversial treatments. Concentrate on basics:- diagnosis, information, advice on management, proper support from Social Services& Social Security.

7. Treatment Obstacles

Lack of medical expertise

Lack of curative research

Medical "turf wars" - while competing for funds some doctors pretend to have a cure, but they don't

Misdiagnosis

Prejudice

"Malingering" accusations

NICE do not classify M.E. as "mental", but psychiatric medicine is often used as a dumping-ground.

The Northern Ireland ME Association - NI MEA

2007-11-15T02:38:00.000-08:00

The Northern Ireland ME Association (NI MEA) has decided to issue a statement regarding the Association, its views, aims and objectives, in an attempt to clarify what it does and what it hopes to achieve.

Unfortunately this has become necessary as, during the past few months, there has been some minor agitation taking place within the internet ME Community aimed at the NI MEA.

Until now, the Association had remained silent on these attempts to misconstrue what the organisation has been doing, and what its views are on the treatment of ME and the lack of facilities here in Northern Ireland.

However, the Association is hoping that by stating the facts clearly, it will help to put paid to the “half –truths” and deliberate selective dissection of statements issued by the NI MEA.

The NI MEA works within Northern Ireland only – whilst we maintain contact with UK ME groups and Associations, we are not answerable to any other organisation or Group, either in the UK, the Republic of Ireland, Europe, or indeed throughout the rest of the world. We feel that we have better knowledge and are more aware of the workings of our own local region than others who live outside the Province, and it seems quite presumptuous for other organisations to tell us what we should and should not do, think or say.

Neither does the NI MEA feel it should be commenting on what other ME Charities or Groups should do, say or think, and has always refrained from involving the Association in this sort of unsavoury practice.

The NI MEA is NOT and never has been a group. We are a fully constituted charity registered in Northern Ireland; a bona fide organisation working solely on behalf of those with ME here, and indeed the only such Charity in the Province doing this. Whilst we accept that there are other conditions that have Chronic Fatigue as part of their illness, we feel that we should first concentrate our efforts on fighting the corner for those with ME.

The NI MEA Committee are all volunteers, they do not get paid for the work they undertake on behalf of the NI MEA.

Our name is the Northern Ireland ME Association – the ME stands for Myalgic Encephalomyelitis – our views are in our name. We have never adopted the Chronic Fatigue Syndrome attachment, we do not use the term CFS when we as an organisation are talking about this illness, neither have we ever used the CFS/ME or the ME/CFS mantle in our name, nor joined the current idea of using the “Encephalopathy” tag which has become popular with some ME Charities.

The NI MEA has a cordial professional relationship with the CFS Service which operates out of the Belfast City Hospital. The Association feels that this allows it to be kept aware of what the Service offers, and gives it an opportunity to develop approaches and ideas.

However, The NI MEA has always stated that the CFS Clinic is not what it would regard as a full, proper, diagnostic facility – we have been campaigning now for 20 years for a full specialist facility. In recent years that campaign has been widened to include the same facility for children and young people, and this was raised again with the CMO for Northern Ireland at our most recent meeting earlier this month.

The NI MEA does not advise anyone with ME to attend the CFS clinic in Belfast – but we respect their decision to do so if they feel it is of benefit to them as an individual. ME is, after all, a very individual illness. Neither do we advise anyone, one way or the other, to undertake any particular therapy, either sensible or fanciful – we provide patients with the information, and then allow them to exercise their common sense and intelligence to decide. We still believe in each person’s freedom of choice.

The NI MEA does not endorse the NICE guidelines regarding the recommendations on CBT and GET. We have made this stance known from the beginning. We have described them as of limited efficacy, with known adverse effects, and as being unpopular with patients.

The NI MEA does not accept the psychogenic model of ME. We have always stated that ME is not “all in the mind”. It is a physical illness. This is made patently clear on the blogs already posted.

The NI MEA has always supported biomedical research as the first best option for the diagnosis and treatment of ME. It has given funds to a UK ME charity currently undertaking biomedical research.

The NI MEA does not feel it is productive to antagonise the general Medical Profession, but neither does it feel it has to comply with all views emanating from the wider Medical Profession.

In almost 20 years since the Association was first established, the aims and objectives have remained the same:

Raise awareness of ME

Locate and support all affected by ME in any way

Liaise with Medical and Educational Professionals on all aspects of ME and its ramifications on those who have the illness

Promote and support medical, educational and social welfare research relevant to ME

Campaign for both Adult and Adolescent dedicated Specialist Facilities in Northern Ireland

Disseminate information to the general public, professional bodies and benefits agencies

The NI MEA would hope that this statement will now clear up any misconceptions – either intentional or unintentional – and we can get on with the tasks that are of most importance to the Association and to those we work on behalf of, the ME patients in Northern Ireland.

2007-11-12T05:13:00.000-08:00

Using the NICE Guidelines on M.E. in Northern Ireland.

Brief to the C.M.O. (N.I.)

from the Northern Ireland M.E. Association.

Monday 12th November 2007.

Summary.

The NICE guidelines of August 2007 are the gold standard for treatment of ME within the UK. New clinics in England are in a position to begin implementing the guidelines. But Northern Ireland is poorly equipped to follow suit.

The debate on ME is one of the most rancorous in modern medicine. Disputes on the aetiology and management of ME are longstanding, and show no signs of resolution. That explains much of the NHS paralysis respecting this condition, but does not justify it.

The D.O.H. (N.I.) correctly takes the view that there is no cure for ME, and no effective treatment. NICE has declined to endorse any of the doctrinaire theories held by patients and practitioners; in Northern Ireland the Department should do the same. There is no cure for ME, unfortunately. But by putting in place basic diagnostic, advice, and support services, the D.O.H. (N.I.) would greatly ameliorate the condition of many ME patients.

In developing new services, the Department should take cognizance of deep-seated aversion among patients to the psychiatric hypothesis on M.E, and the attendant clinical, political, ethical and legal ramifications.

Treatments recommended by NICE have limited efficacy and known adverse effects, and face inevitable patient resistance. Clinicians in Northern Ireland should adopt a pragmatic approach, in the awareness that more acceptable treatments will hopefully evolve.

NICE Recommendations for M.E.

The NICE guidelines on CFS/ME for England and Wales, issued on 22nd August 2007, are the first comprehensive instructions for N.H.S. personnel respecting the diagnosis and treatment of M.E.

The principal recommendations are:

Establishing specialist treatment centres are the best way to develop M.E. services.

50% of patients can be managed by GPs; the rest will need specialist referral.

All paediatric cases should be referred to a paediatrician.

Severely ill adult patients should be referred to a specialist immediately; the lesser affected within 3-6 months.

Housebound patients need adequate N.H.S., Social Services & D.W.P. support for effective home management.

For mild and moderate cases, the recommended management strategies are CBT (Cognitive Behavioural Therapy) and GET (Graded Exercise Therapy), as specifically defined by NICE. These approaches are palliative, not curative.

Obstacles to implementation in Northern Ireland.

In Northern Ireland:

The D.O.H (N.I.) has no strategy for M.E. services.

The budget for M.E. services is derisory.

The sole specialist centre can no longer accept referrals from outside Belfast.

In 8 years, no attempt has been made to set up satellite services for those who cannot travel long distances.

Clinical expertise in M.E. has not been developed, and specialists are scarce.

Paediatric and adolescent services are inadequate.

Domiciliary support for the severely affected is practically non-existent.

Since 2003 England has had a national strategy to develop M.E. services, and many parts of the country now have the clinical resources necessary to begin implementing the new NICE guidelines. However the same cannot be said for Scotland, Wales, and Northern Ireland.

According to NICE statistics, there are 6,700 M.E. patients in Northern Ireland. The sole funded specialist provision to handle this workload is one single Occupational Therapist, working part-time at Belfast City Hospital. Due to a limited budget and excess demand, the Belfast clinic has been unable to accept outside referrals since May 2007.

Strategy to develop M.E. services in Northern Ireland.

The D.O.H. should plan a comprehensive service covering all parts of the province.

The starting point is an adequate budget.

Medical expertise in M.E. should be developed locally.

The Belfast clinic should be expanded to include permanent medical staff, a social worker, and additional OTs.

Satellite clinics should be developed at strategic locations such as Craigavon, Omagh and Altnagelvin.

Services must be developed for (a) children and adolescents, and (b) the severely affected housebound.

The starting point for the expansion of ME services is to provide an adequate budget. So far, few doctors in Ulster have shown an interest in this field of medicine. But (as one leading London ME clinician put it), if a ring-fenced budget is provided, practitioners will soon reach out. Existing treatments for ME involve no expensive drugs or procedures. But they are manpower intensive, and do not come cheap.

The kind of clinicians who are required hardly exist, either here or indeed in G.B. The only local solution is to recruit and train a new cadre specifically for the purpose. In theory CBT should be delivered by psychologists or psychotherapists. However there is a national shortage of psychotherapists. In practice, such management of ME patients is handled by Occupational Therapists, both in England and Northern Ireland.

Leading ME clinics in England are staffed by all grades of doctors, from professor to staff physician, by social workers, physios, OTs, and benefit advisors. If the Belfast clinic is to follow NICE recommendations, then a much larger number of patients will be seen, for longer periods of treatment, with greater frequency. Obviously this will entail a larger complement of staff. Currently the sole doctor works in a voluntary capacity. This is laudable but unsustainable, given the expected workload.

As regards treatments, NHS staff in Northern Ireland will feel bound by NICE recommendations on CBT & GET. Doctrinal disputes on treatments are inevitable, unfortunately. But - for the immediate term only - these arguments can wait. The most pressing need is to set up basic diagnostic, advice and support services.

One of the greatest challenges will be to establish support services for severely affected bedbound patients. One approach would be to base a specialist domiciliary visiting service in Belfast, going on frequent circuit round the province.

Addressing Treatment Controversies.

There is no cure for ME, and no effective treatment.

Patients, practitioners, the education sector, and employers should not be misled into expecting quick-fix cures for ME.

Treatments recommended by NICE have limited efficacy, and known adverse effects, and will face patient resistance.

NICE stress that ME patients should not be denied treatment if they exercise their rights to choice and free consent.

Clinicians should take a pragmatic approach to treatments. Research is still in its early stages, and new strategies may well evolve.

Regardless of treatment controversies, the simple act of introducing adequate services for diagnosis, advice, information and support, will be a great improvement.

The view of the D.O.H. (N.I.) is that there is no cure for M.E. and no effective treatment. That is an accurate statement of medical fact, recently confirmed by NICE.

However, there is still much that can be done for M.E. patients. (1) Prompt diagnosis removes uncertainty; (2) Expert prognosis reduces anxiety; (3) Informed management advice improves quality of life; (4) Objective expert medical assessments are vital for employers, the education sector, and the Benefits Agency.

In recommending CBT and GET for mild and moderately affected M.E. patients, NICE make no greater claim for these approaches than that they moderate symptoms and improve quality of life: “The GDG did not regard CBT or other behavioural therapies as curative or directed at the underlying disease process, which remains unknown”, they say; "such interventions can help some patients cope with the condition".

The leading British research advocate for these treatments concurs. "They are not remotely curative", he says; "They are not the answer for M.E." (Professor Simon Wessely, JAMA, Vol. 286, 11 Sept. 19, 2001). Some of his associates are known to make exaggerated promises on treatment efficacy, however. NICE have emphatically rejected such claims.

Patient opinion on the new NICE guidelines has been mixed. Some aspects have been welcomed. But NICE recommendations on CBT & GET have been rejected by all UK ME charities, representing the full spectrum of patient opinion.

Patients’ objections to these forms of management are well grounded. The authors of the Canadian and Australian national guidelines on ME pointed out that the evidence base for the effectiveness of CBT & GET in ME is flimsy; and that there are many reports of adverse effects with GET. The NICE 2007 guidelines warn practitioners about such adverse events, and do not recommend these treatments for the severely affected.

Additionally, NICE anticipate widespread patient objections to current treatments, and proposed a strategy to deal with them. Patients should not be simply discharged if they refuse recommended treatments. Instead they should be offered alternatives, and allowed to continue with elements of the treatment programme they find acceptable. NICE emphasised that, as in all other medical conditions, ME patients have an absolute right to choice and consent.

In rolling out new ME services in Northern Ireland, the D.O.H. (N.I.) should not adopt any doctrinaire stance in the long-running controversy about particular forms of treatment. Current NICE recommendations are subject to revision at two years, and may change. MRC research studies into GET & CBT - and alternatives - are under way, but will not report until 2009. Subsequently, more acceptable treatment strategies may emerge.

Northern Ireland need not wait for the outcome of these investigations, however. It will be a significant advance simply to put in place basic services, diagnostic, advisory and supportive.

Psychiatric Oversight of the Belfast CFS Clinic: Implications.

The Belfast CFS clinic is headed by a liaison psychiatrist.

The clinic's O.T. has a high patient satisfaction rating.

A large percentage of patients strongly object to the siting of this ME clinic within a psychiatric unit.

These objections will ultimately inhibit the growth of this unit.

Only a minority of English ME specialist centres are psychiatrist-led.

Patients should be offered a choice of treatment approach. Proposed new units in N.I. should be located outwith psychiatric medicine.

The Belfast CFS clinic is based at Windsor House, the psychiatric department of Belfast City Hospital, and is supervised by a liaison psychiatrist. This clinic is well-established. The current Occupational Therapist has accumulated valuable expertise in the condition, and is well-liked by those patients who choose, and are chosen, to be treated by her.

That said, this clinic will not achieve its full potential while it remains solely within the psychiatric specialty. Patients surveys indicate a high level of satisfaction among those who attend. But approval is not universal. Its location in Windsor House produces strong hostility within a large remaining section of the patient population in Northern Ireland. Their grounds for objection are that a medical condition, the psychiatric status of which remains undetermined, should not automatically be managed by a psychiatrist.

The strength of this groundswell should not be underestimated, and its causes must be addressed, not ignored. In August 2005 a Belfast journalist, and ME patient, published a full-page feature in a Belfast morning newspaper, detailing her objections to the psychiatric classification of this condition, and her unjustified psychiatric referral.

Locally and internationally, ME patients who are forced into a psychiatric construct become alienated from orthodox medicine. NICE found that 44% of ME patients in a UK sample had resorted to "alternative" practitioners. The Australian national ME guidelines proposed an obvious solution to this familiar difficulty: patients should be offered a range of treatment options, within psychiatric medicine and outside of it.

Most ME specialist centres in England are not run by a psychiatrist. At a leading ME clinic in London, Barts, oversight is by a physician/psychiatrist combination. When it was set up in the 1990s, the Belfast clinic initially had such an arrangement.

Psychiatric Classification Is Counterproductive.

Psychiatric hypotheses on ME are unproven, and are not accepted by NICE.

Nonetheless, the psychiatric hypothesis is the dominant UK treatment model.

Consequently, thousands of ME patients are levered into a psychiatric construct, on inadequate clinical grounds.

This is the principal source of the enduring, sterile, controversy on ME.

Many patients and some clinicians in Northern Ireland are active proponents in this controversy.

Chronic Fatigue Syndrome was recently described by a member of the NICE GDG as the most controversial illness ever. The reason for controversy is simple: there is a common though unfounded assumption that ME is a psychiatric disorder.

All other elements of the dispute flow from this misconception. There is widespread psychiatric misdiagnosis of large numbers of ME patients, who are then subjected to inappropriate treatments. Naturally this situation is resented and resisted by M.E. patients throughout the English-speaking world.

The theory that ME is a psychiatric condition has never been more than an hypothesis, itself under challenge by mental health professionals who specialise in this area. Warnings from the Royal College of Psychiatrists, (that ME cannot be equated with mental illness, and that M.E. patients should not be "blamed for being ill"), are routinely ignored in practice.

Some psychiatrists put forward the theory that ME patients are somatising, because of mental trauma, such as childhood sex abuse. Their principal mode of treatment is to persuade patients to ignore their own symptoms. Other psychiatrists suggest that ME patients are motivated by a desire for secondary financial gain. The lazy-minded and unscrupulous quickly translate these unproven hypotheses into a conviction that (a) the illness is "all in the mind"; (b) that ME patients are to blame for their own illness; and (c) that they are professional malingerers.

Ethical and legal implications of psychiatric misdiagnosis.

There is no consensus, nationally or internationally, within psychiatry or outside it, on the psychiatric hypothesis for ME.

Psychiatric misdiagnosis of ME patients, and inappropriate treatments, are widespread.

The lack of medical expertise in, and the depth of medical prejudice against the diagnosis of ME, are fertile breeding grounds for future litigation.

Practitioners in Northern Ireland should be aware that patient litigation against malpractice in ME has begun, and Parliamentary unease is growing.

Psychiatric theories on somatising and secondary gain are treated with horror by leading clinicians internationally. They are explicitly rejected in the Canadian and Australian national ME treatment guidelines. The position of the NICE GDG is that all theories on the aetiology of ME are unproven. In particular, NICE explicitly declined to endorse any of the psychogenic hypotheses.

Notwithstanding scientific doubt, the somatic hypothesis is dominant; it has now achieved a status akin to scientific fact. The English psychiatric ME lobby receives the lion's share of D.O.H. and MRC research funding. Its members are leading advisors on government policy within the DWP and NHS. The treatments they advocate have been adopted by NICE.

ME patients find this situation extremely threatening. Although the clinical debate is unresolved, and the aetiology of ME is still unknown, nevertheless thousands of ME patients are being levered into psychiatric management, in the absence of sound clinical indications. Patients' fears are now translating into political unease in Parliamentary circles.

The ethical and legal implications of mass misdiagnosis and mismanagement are obvious, and will be a fertile breeding ground for future litigation. Recently numbers of adult patients with ME have successfully challenged compulsory psychiatric detention; one young adult died soon after, from the trauma of her experience. One adolescent obtained financial compensation for unjustified detention, after a major inquiry. One paediatric case reached the GMC and the High Court, inconclusively; others are pending.

Political Disquiet.

A committee of senior Parliamentarians recently confirmed and condemned the psychiatric monopoly of ME treatment and research in the UK.

In 2006 Dr. Ian Gibson convened a cross-party committee to examine ME research funding. Membership included senior back-benchers and peers, a former Minister of Health, a consultant surgeon, and a former President of the Royal College of Physicians.

This committee regretted the dominance of the psychiatric analysis of ME. “While CFS/ME remains only in the psychological section of medical discourse, there can be little chance of progress”, they concluded.

They also objected to the psychiatric monopoly on research funding. This echoes sentiment among patients. At best, psychiatric research is aimed at palliation. The patient community would prefer biomedical research, aimed at cure.

NI MEA Meetings at Stormont

2007-10-31T08:32:00.000-07:00

The NI MEA has already met with the Health Spokesperson for one of the Political Parties in the Assembly in October. The Association was contacted and invited to give a presentation on 11th October in Parliament Buildings, and this was delivered by the Chair, Ken Hull and Committee member, Horace Reid. The prepared document focused again on the NICE guidelines, and also highlighted the lack of services and facilities for those with ME here in the Province, and particularly the absence of any specialist provision for children and young people with ME. It also outlined the fact that the Guidelines has stipulated that every child or young person with for ME has to be seen by a paediatrician, and that at present there are no full clinical facilities available anywhere in Northern Ireland.

The NI MEA has also been invited to attend a meeting with the Chief Medical Officer for Northern Ireland, Dr Michael McBride, and this is taking place on Monday 11th November at the CMO's office at Stormont. Once again the NI MEA will be represented by the Ken Hull and Horace Reid, and the NI Administrator will also be taking part in the discussions. It is hoped to once again discuss the need for proper diagnosis, treatment and management for those with ME, for proper clinical provision, and the setting up of additional clinics in other parts of the Province.

The Association has also received an invitation to make another presentation to the full Assembly Health Committee on Monday 26th November, again at Parliament Buildings, Stormont. This followed on after the Association wrote to members of the Health Committee in August and September to highlight the on-going problems for ME patients in the Province. Once again, we will be represented by Ken Hull and Horace Reid, and it is hoped that another member of the NI MEA Committee will be well enough to attend.

Further information will be posted after these meetings take place.

Report on Medical Conference; 8th September

2007-09-12T06:58:00.000-07:00

NIMEA Medical Conference,
Lisburn, Co. Antrim,
8th September 2007.

The Northern Ireland ME Association held a successful medical conference on 8th September. Present were paediatricians, GPs, hospital consultants, nurses, O.T.s, representatives from the Health and Education boards - and DLA medics.

Delegates were welcomed to Lisburn's riverside Civic Centre by the Lord Mayor - who has staff and family members affected by ME and Fibromyalgia. Doctors and visiting speakers got on famously. Generous catering was supplied ensuite, and attendees didn't leave the function room all day. Terry Kelly, NIMEA's benefits officer, was in demand, explaining the intricacies of DLA.

First speaker was Dr. Larry Martel, paediatrician at the Ulster Hospital, Dundonald. "I do not believe that ME is a psychiatric condition", he declared. "It is a physical illness". That set the tone for the rest of the day. There was no hard-sell of CBT and GET; no-one blamed the patients for being ill. Instead the conference got down to the serious business of what could and should be done for ME patients.

Second was Horace Reid of NIMEA, who since 22nd August had distilled 317 pages of new NICE guidelines into a 50-minute Powerpoint. These guidelines are not the mixture as before. The authors were practitioners rather than well-known ME researchers. NICE had its own definition of CBT, much of it good old-fashioned common sense, and none of it about "dictation of illness beliefs". The NICE brand of GET is not an imposed rigid schedule; it had built-in rest periods; and it comes with explicit warnings of adverse effects. NICE asserted that in ME as in other conditions, the patient's rights to consent and choice of treatment were paramount, and non-negotiable. NICE takes the view that manifold psychiatric hypotheses - remain hypothetical.

The audience rapidly warmed to Dr. William Weir, famous for his amusing presentation to Dr. Ian Gibson's parliamentarians, and respected for his long experience treating ME. Willy has a streak of Boris Johnston in him: shrewd, robust, and unfailingly polite. He cocked a satirical snook at the philosophical pretensions of the bio-psycho-social camp. "Postmodernism and Cartesian Dualism? It's all fiddlesticks." (He used a saltier phrase). "This stuff has no relevance to the real world!" Conference had already come to the same conclusion, and delegates now fell about laughing. Dr. Weir considers that the guiding principle of managing ME is common sense, and treatment can be left in the hands of a competent GP. "It's not rocket science."

Jonathan Kerr was to have been first speaker after lunch. But he came down with a last-minute bug, and was unable to travel. Instead he entrusted presentation of his latest research to Dr. Weir, one of his many collaborators. His findings, soon to be published, confirm abnormal immunological activation in ME patients. An array of genes governing immune responses are abnormally “switched on”. Better than that, he has now identified a number of clinically separate ME subgroups, each with its own genetic signature.

Dr. Noel Scott, liason psychiatrist in charge of the CFS Clinic at Belfast City Hospital, commented on preceding speakers. He echoed one of the key NICE findings - patients and doctors should stop quarrelling about imponderables, and concentrate on what could be achieved here and now. Dr. Scott's clinic is seriously under-resourced. His own role is unfunded, and his O.T. works part-time. Since April 2007 he has been unable to accept regional referrals from outside the Belfast area.

He was followed by Jayne Perkes, his Senior Occupational Therapist, who conducts group classes spread over 8 weeks. She prefers Graded Activity to GET. A survey of 33 patients in 2005-6 gave her a 90% satisfaction rating.

To wind up, NIMEA president Sylvia Bolton engaged delegates in a brainstorming session. Split into groups of three, they were asked for suggestions. One paediatrician took a supportive, rather than macho approach to the severely affected. Another was unimpressed with the efficacy of recommended treatments. The psychiatric delegation reflected on the damaging effects of mental health stigma. A DLA representative regretted the divide between ME doctors and patients.

Everyone deplored the lack of treatment provision. O.T.s said they were interested, but as things stood, there was no hope of them taking on this time-consuming condition. Two ME mothers, who were also NHS nurses, had come. Both had severely affected teenagers, and found NHS support was nil.

NIMEA identified many gaps in provision - for children, for the severely affected, and for patients distant from Belfast. NIMEA has long suspected that many of the severely-affected are not in touch either with the NHS or charities. They were dismayed to have this situation confirmed on Saturday.

A health board member had strong words of advice for the ME world - NHS provision would not increase until local MPs were alerted to the current parlous situation in Northern Ireland.

Around four pm delegates dispersed into the autumn sunshine. Dr. Willy Weir was last seen settling in front of a Rugby World Cup match, before his flight back to London.

NI MEA Initial Response to NICE Guidelines on ME/CFS

2007-08-22T01:29:00.000-07:00

22nd August 2007

The NICE (National Institute for Clinical Excellence) has today issued its guidelines on the care and treatment for those with ME/CFS.

This is the NI MEA's initial response:

" The Northern Ireland ME Association is disappointed that these new guidelines bring us no nearer a cure for this common and debilitating illness, and that so few management options are being offered to NHS patients.

The NICE guidelines are welcome to the extent that they further confirm the validity of this emerging illness, and that NHS staff of all grades have now been given detailed instructions for its management.

Also welcome are stipulations that all long term patients should be referred to dedicated specialist clinics; that all children with ME should be cared for by a paediatrician; and that severely affected patients who are housebound and bedbound should receive intensive support in their own homes.

Unfortunately, the NHS in Northern Ireland is poorly equipped to implement these new national guidelines. The ME Clinic at Belfast City Hospital is chronically under-funded; as from May 2007 it can no longer accept referrals from outside Belfast.

In March 2005 The chief Medical Officer in Belfast assured the NI MEA that NHS provision for ME patients in Northern Ireland would be reviewed once the NICE guidelines were published.

The time has now come to deliver on that promise.

Technical Problems with NI MEA Website

2007-08-10T03:17:00.000-07:00

The Northern Ireland ME Association official website at http://www.nimea.org/ is currently experiencing technical difficulties and we are doing all we can to rectify this as soon as possible.

The problems include adding new information to the site, and the website blog has been deleted until all problems have been resolved.

Please feel free to use this NI MEA blog spot in the meantime, though the NI MEA would make clear that any views expressed by participants are not necessarily those of the Association, and anyone participating is asked to maintain a normal standard of decency and responsibility to others.

Thank you.

Major Medical Conference on 8th September 2007

2007-08-08T05:16:00.000-07:00

N I

M E A

The Northern Ireland ME Association (NI MEA) would like to let all Medical and associated Professionals know about a Major Medical Conference taking place on Saturday 8th September 2007. The Venue is: Lagan Valley Island Centre, Lisburn. It is an all-day event, starting at 9.00AM. Admission is FREE, and refreshments and lunch is also provided.

* Please note - this conference is for Medical and associated professionals only*

This event is being sponsored by "Awards For All"

Our Guest Speakers are:

Dr William Weir FRCP (Lond) FRCP (Edin); Consultant Physician and Hon Senior Lecturer (School of Medicine) Royal Free Hospital, London. Dr Weir's posts have included Honorary Senior Lecturer in Clinical Tropical Medicines and he has held various medical posts including Cardiology, General Medicine and Nephrology. Dr Weir's main clinical interests are Treatment of Severe Malaria; Imported Infections; Chronic Fatigue Syndrome (ME); Diagnosis of Occult forms of TB and he ran an outpatient CFS/ME Service between 1987 - 2000. His current major research interests are the Clinical Manifestations of Chronic Fatigue Syndrome and Immunological Mechanisms in Chronic Fatigue Syndrome.

Dr Jonathan Kerr BSc; MD; PhD; FRCPath. Dr Jonathan Kerr was born in Northern Ireland and qualified in Medicine from Queens University. He is Clinical Senior Lecturer in Inflammation and Honorary Consultant in Microbiology at St George's University, London. Dr Kerr has worked as a Microbiologist in Belfast, Manchester and London. His interest in ME/CFS began during a study of paraovirus B19 infection, when he showed that a percentage of infected cases developed ME/CFS which persisted for several years. He is currently the principal investigator in a research programme on ME/CFS at St George's. This involves development of a diagnostic test using mass spectrometry, analysis of human and viral gene expression.

Dr John Gow MIBiol; CBiol; PhD. Professor Gow is currently the Director of the Centre for Forensic Investigation at Glasgow Caledonian University. Before that he was Senior Lecturer in the Department of Neurology at University of Glasgow & southern General Hospital, Glasgow. He worked with Professor Peter Behan in that department from 1990 until Prof Behan's retirement in 2001. Professor Gow has had an interest in ME/CFS since 1990 and has published more than 20 papers on the subject. He carried out the first whole-geneome DNA microarray assay on patients with CFS/ME and produced a complete gene signature for CFS/ME. His Research department is currently developing a diagnostic test for CFS/ME.

Dr Noel Scott MRCP; MRCPsych;FRCP. Dr Scott is a Consultant Psychiatrist at Belfast City Hospital. He studied medicine at Queens University and was appointed to BCH in 1981 with special responsibility for Psychiatry of Old Age, south Belfast sector. It was here that he quickly established the first Psychogeriatric Service in Ireland. His interest in ME/CFS started in the early 1990's when he was asked by Physician colleagues to see patients with the illness at BCH Tower Block. He decided to visit the ME Clinic in Romford, Essex, run by Professor Leslie Findley. Following this visit he resolved to set up a service in Northern Ireland for those with ME/CFS along similar lines. Following his Pilot Service in 1997/1998 the CFS Service began in 1999. it remains the only facility in Northern Ireland for patients with ME/CFS - Dr Scott is in exploratory talks with the NI MEA on a project to expand the CFS Service throughout the Province.

Dr Larry Martel FRCP. Dr Martel was born in the USA, and attended Brown University where he qualified in 1967 and went on to attain a Masters in Medical Sciences in 1969. He obtained his Doctor of Medicine degree at Harvard University in 1971 and from there started his initial training in Paediatrics at the Children's Hospital Medical Center in Boston from 1971 - 1974. Dr Martel is currently the Consultant Community Paediatrician with Down and Lisburn Trust, and the Ulster Hospital Trust, and his special areas of interest include children with chronic illnesses, developmental delays and ADHD. His is also the Paediatric Advisor to the NI MEA and has been involved with several cases of moderate to severe ME in children and young people in NI.

In addition to our guest speakers, we will also have in attendance:-

Dr Sylvia Bolton, BSc, BA, MA (Ed) who is the Education Advisor to the NI MEA. Dr Bolton specialises in Special Educational Needs. She will be very happy to answer any queries that any of the delegates may have in relation to school/college and the affects on education posed by ME/CFS.

Mr Terry Kelly. Mr Kelly is an Information Officer with Disability Action, the leading Welfare Charity in the Province. He acts as the Welfare/Benefits Advisor to the NI MEA and has assisted many of our members in relation to Benefits claims etc, and will assist any GP who may wish to find out more in relation to Patient Benefits Forms.

Mr Horace Reid will also be making a presentation on behalf of the NI MEA in relation to the NICE Guidelines, which are due to be published later this month (August). The NICE guidelines on ME/CFS is the biggest development in relation to this illness in the past 5 years. Mr Reid will be outlining the implications the guidelines will have on ME/CFS patients and NHS Staff.

We would urge any Medical Professional - including Medical Students - to attend this conference, as it will not only give more information on the illness itself, but provide all the current developments in Bio-medical research. Places are limited. If you would like further information, or wish to reserve a place, then please contact:

Jo Calder; Northern Ireland Administrator at:

Information Line (028) 90 439831 (24 hours)

email: jo@nimea.org

28 Bedford Street Belfast BT2 7FE