A Clinic For Ireland
We are of the belief that a dedicated clinic for ME/CFS sufferers is needed in Ireland. In fact, data from a 2002 Irish ME Trust questionnaire to General Practitioners indicated that over 85% of responding GPs favoured the setting up of such a clinic.
In that same year, it was suggested in the UK Chief Medical Officer’s report of 2002 that clinics could be set up incorporating multi-disciplinary teams. In practice, although the UK Government has allocated £8.5 million for the establishment of these clinics, recent history has shown that the management structure of the clinics comprises psychiatrists, psychologists and occupational therapists, etc., with the apparent predetermined intention of offering only exercise programs and cognitive behavioural therapy to combat symptoms.
The UK CMO report of 2002 did however, advocate certain testing procedures as outlined below:-
Physical examination - The physical examination is essential, and it should be repeated as indicated by symptoms and clinical course. Findings are frequently normal in CFS/ME, but the examination may be helpful in excluding other conditions.
Basic screening tests - There is no validated diagnostic test for CFS/ME but several basic screening tests should be undertaken to exclude a wide range of conditions.
Basic screening tests
The tests include:
- full blood count
- C-reactive protein (CRP) concentration
- blood biochemistry tests including concentrations of creatinine, urea, electrolytes, calcium, phosphate, glucose, liver enzymes, and markers of thyroid function
- simple urine analysis
Other tests will be determined by the history or examination - e.g. rheumatoid factor and ANA with prominent joint or skin features and antibodies to gliadin and endomysium when coeliac disease is part of the differential diagnosis.
Specialised tests - These may be required within the differential diagnostic process, so as to exclude particular conditions that are suggested by specific types or mixtures of symptoms, or abnormal findings on physical examination or investigation. For example, in patients with suggestive symptoms, it is wise to carry out screening tests for a range of rheumatic diseases (including tests for rheumatoid factor and ANA [antinuclear antibodies]), because these disorders are in the differential list. By contrast, tests that are currently used in research, for example for specific immune markers or neuroimaging, are not necessary as part of routine clinical evaluation.
UK Health Minister Stephen Ladyman stated:
- "CFS/ME is a debilitating and distressing condition that affects people of all ages. As the causes are still not fully understood, it is also a condition that poses a challenge to medicine and the NHS. These new centres and local teams mean that we can start developing focused, local services that will make a real difference to people's lives. The support, empathy and understanding of health professionals is an important factor in the care of people with this condition
It is our view however, that the existing NHS CFS/ME clinic model in the UK is not something which would be welcomed by sufferers in Ireland as it will not try to get to the root of the individual’s problems. It should also be noted that clinics can operate in different ways. Neurologist Dr Abhijit Chaudhuri managed a very well thought of ME/CFS clinic in the Southern General Hospital in Glasgow until his funding was cut and he had to relocate. Dr Chaudhuri operated this clinic only on Friday, seeing first time callers in the mornings and follow up referrals in the afternoons.
Our own Department of Health are not unsympathetic to the plight of ME/CFS sufferers. Subsequent to a meeting with the Irish M.E. Trust following publication of the UK CMO Report in 2002, Chief medical officer, Dr Jim Kiely stated:
I welcome the publication of the report and appreciate the enormous amount of work which went into it. It provides an excellent reference document for all those with an interest in the subject. I recognise that CFS/ME is a source of significant morbidity in the community and that, when so little is known about the cause of the illness, there is serious concern about how the illness is diagnosed and those who suffer from it are treated. I agree that health care professionals of all types need to have a far greater awareness of and capacity to identify the illness, diagnose it and manage the illness and those who suffer from it.
Welcome words indeed. But what about the establishment of a clinic? Not a number of clinics. Not the Euro equivalent of £8.5 million sterling. Just one clinic, somewhere, perhaps operating on one day a week to start off with. A room in a hospital with dedicated personnel?
A subsequent meeting was held with officials from the Department of Health in which the IMET put forward the view that a clinic for ME sufferers was necessary in Ireland to create a better framework for diagnosis within the broad umbrella term of CFS and so lead to better avenues for treatment. The Department of Health however, seemed content in the belief that General Practitioners were coping fairly well when presented with this possible diagnosis. We asserted that, as outlined in the IMET mail shot to GPs, 85% of responding doctors indicated that they would welcome an established clinic for referral and back up.
Following many Dáil questions to the Minister for Health both before this meeting and afterwards, Minister for Health Micheál Martin concluded:
Officials of my Department, including the Chief Medical Officer, have met with representatives of the Irish ME Trust, both this year and last year. The Department's Chief Medical Officer has pointed out the limitations on the health care system's ability to provide a full range of services to those who are already diagnosed with CFS/ME. These limitations are the same as for those who suffer from other chronic diseases. The allocation of resources needs to be based on priority health needs and on evidence as to what interventions are seen to be most effective in combating these conditions.
The health system and particularly acute services are under pressure due to demand for emergency services and elective services. Within this context, there are limitations on the capacity of the health care system to respond to demands for increased or additional services. It is therefore, difficult in the circumstances to identify funding to establish specialised units for CFS/ME sufferers.
In view of the meetings which have taken place, I do not believe a Departmental liaison person needs to be appointed as suggested by the Irish ME Trust. However, I would like to assure the Deputies that my Department will continue to keep the issue of providing services to CFS/ME sufferers under review, taking account, in particular, of the experience of initiatives in other countries.
During our discussions, it became clear that the Department sensed a stumbling block because there was not general consensus among consultants on the best way forward for treatment. This is the same situation in the UK and elsewhere but that has not stopped departmental agencies there collaborating with ME/CFS groups in order to install some referral system. We enquired as to whether an agreement in principle could be reached on the establishment of services provided these apparent obstacles could be overcome. We got no such commitment.
Following further lobbying and Dáil questions Minister Martin then agreed to look further into this whole area. In response to further Dáil questions and letters to his Department, he affirmed:
Officials of this Department, including the Chief Medical Officer, have met with representatives of the Trust. Arising from these discussions, the Department has asked the Eastern Regional Health Authority to examine the service and financial issues involved in establishing an identified pathway of care for the management of those who are diagnosed with ME/CFS and report back to the Department.
The Department has recently met with the Eastern Health Authority on the matter. It has been agreed that the examination to be undertaken by the ERHA in identifying a care pathway for CFS/ME patients involves consideration of the service requirements across the health system. It will need to address primary care, acute care and community care service requirements. It is not possible to put a time scale on the work to be carried out but the ERHA have been asked to give the matter priority. The ERHA will liaise with the Irish M.E. Trust in undertaking their assessment of service requirements.
That was February 2004. Although this liaison did take place, the issue was put on the back burner due to the overhaul of the Regional Health Boards and the establishment of the Health Service Executive. Minister Martin was also replaced as Minister for Health by Mary Harney TD. Communication was then dispatched to Minister Harney to see how matters could be progressed.
In May 2005, the HSE (health service executive) set up a steering group to examine “best care treatment pathways “for people diagnosed with ME/CFS. What we specifically wanted was for the minister to appoint a liaison officer to look at this whole area in terms of diagnosis, care plans, and the cost to the nation. In any case this Steering Group was formed and comprised of representatives of the HSE, the Irish ME Trust and the Irish ME/CFS Association. A researcher and assistant were appointed and this Steering Group met periodically until September 2007 when a final draft report was compiled by the researchers following face to face interviews with ME sufferers, about 200 completed questionnaires and an examination of the international experiences in other jurisdictions through desktop research.
Whether by accident or design, both the IMET and the Irish ME/CFS Association felt that this report was slanted towards the psychological bias and that particular perception of what ME was and we could not justify supporting it. We felt the report did not accurately reflect people’s expressed views which we believe supported the establishment of an ME clinic in Ireland dealing with the complex nature of this illness.
We still believe that the best way forward for ME in Ireland les with the establishment of a clinic which will investigate suspected cases of ME/CFS using the Canadian Consensus Document for diagnosis of ME/CFS because we believe that this diagnostic criteria has the best chance of sub grouping a large number of suspected ME/CFS cases who are currently given this diagnosis based on the Fukuda criteria of 1994 which was initially constructed for research purposes and allows by default a large number of people to be given the diagnosis of ME/CFS who quite simply don’t fit into this category.
Evidence of progress on a large scale can be seen in the endeavours of the Whittemore Peterson institute in Nevada USA http://www.wpinstitute.org/. We were very pleased to be able to invite Dr Daniel Peterson to Dublin in May 2008 for a lecture and are in a position to invite a health official from our Department of Health to visit this campus when it opens in 2010. This diagnostic and treatment centre for ME/CFS can demonstrate the way forward to health officials so that they may replicate this model (scale not important) and see for themselves the avenues for treatment which won’t rely on exercise for ME.
We want our Department of Health to once again consider appointing a liaison officer as a point of contact between up to 12,000 sufferers in Ireland and the Department and in turn let this individual learn about what is going on with this illness. Only with this knowledge can the Department of Health be accurately informed which in turn will lead to better health care for our citizens.