Why set up a National ME / CFS Clinic in Ireland ?

There are five reasons why the Irish government should set up a National ME / CFS clinic :

1. The High Economic and Social Costs of the Illness  (Based on University Post-graduate  research)
2. The terrible suffering endured and deaths from ME / CFS
3. The fact that bogus doctors and bogus clinics and alternative medicine practitioners are charging exorbitant fees to patients for useless treatments which are endangering the lives of such patients
4. In the future, the clinic will become a source of foreign revenues for the Irish government and the exchequer
5. The need for more effective Decision Support Systems (DSS) to achieve greater productivity, cost-efficiency and value for money in the Irish Health Service, and support the work of a national ME / CFS Clinic and Centres of Excellence for Cancer and other illnesses

1. The High Economic and Social Costs of the Illness  (Based on University Post-graduate research)
© Copyright David Egan, Post-graduate research papers, National University of Ireland, Galway, Ireland, 2008

(i)The costs of CFS to the Irish economy and US economy

(ii) Costings for ME / CFS Clinic measured against the Benefits to the Economy  (Microsoft Excel used - click here to download Excel Viewer)

2. The terrible suffering endured and deaths from ME / CFS

It's important to realise that many people are enduring terrible suffering and many are dying of the health complications caused by ME / CFS  ( See Memorial section ) . Thousands of patients are bedridden, and many more are confined to wheelchairs or are housebound. CFS bears a resemblance to Cancer and AIDS in the sense that many CFS patients have died of opportunistic infections due to a depleted immune system. Research also shows that CFS patients have serious heart and vascular abnormalities arising from CFS, making them highly susceptible to a sudden heart attack. New research shows that CFS patients have immune system abnormalities which put them at a high risk of getting certain types of Cancer. There is also a high rate of suicide among CFS patients, this being brought about by frustration, desperation for some cure, social isolation, lack of support, constant pain, exhaustion and weakness, and financial hardships. On May 12 1995, testifying before a US Congressional briefing, AIDS specialist Mark Loveless told legislators that a CFS patient "feels every day significantly the same as an AIDS patient feels two months before death". Mr. Loveless supported his statement with data from research conducted at his own institution and morididity data provided by other CFS experts who had compared the two diseases (AIDS and CFS).

The case for an ME / CFS Clinic is clear-cut and straightforward  -  a diabetic goes to see an endocrinologist in a diabetes clinic a few times a year, someone with Cancer goes to see a Cancer specialist a few times a month, someone with heart disease goes in to see a Cardiologist a few times a year, some with rheumatism goes to see a Rheumatologist a few times a year, someone with Parkinson's disease goes to see a neurologist a few times a year, someone with lupus goes to see their dermatologist and neurologist once a year. Then they have the local doctor to follow up on this and keep it going. So there are two types of doctor assisting a patient   -  a specialist in a special clinic attached or affiliated to a major hospital and a local doctor in a doctor's practise.

In Ireland and Britain, CFS patients have no CFS specialists and no CFS clinics. All they have is a local doctor or GP. The GP or family doctor is incapable of treating and curing CFS. There is no mention of ME / CFS in medical textbooks and medical training in Ireland. The average doctor or GP knows very little or nothing about CFS, and the vast majority of them are incapable of diagnosing or treating CFS. Yet this is all that is available for CFS patients in Ireland and Britain at the moment. To worsen this situation, both Ireland and Britain do not have the high-tech testing equipment to detect the abnormalities and dysfunctions found in ME / CFS. For example, they are unable to test for RnaseL abnormalities in the immune system and do not have equipment for detecting HHV6a virus infections, mycoplasma infections, stealth virus, JHK virus, Parvovirus B19 infections of the blood, spinal fluids and brain and nerve tissues. They cannot detect neurological abnormalities in ME / CFS. In addition, the majority of doctors do not know about these special tests and what to look for in CFS. This lack of knowledge and expertise and lack of proper testing and testing equipment means the majority of CFS patients are not getting the medical treatment they require. 

Many of the medical abnormalities found in ME / CFS cannot be detected in standard blood tests in Ireland. Newer high-tech blood tests are required to identify the specific medical abnormalities found in ME / CFS patients ; these tests are currently not available in Ireland as of November 2006. A special Clinic would have the resources to invest in this technology and could serve as a focus point for diagnosing and treating the illness in Ireland. The important point to remember is that thousands of ME / CFS patients have recovered through proper and thorough medical treatment and support. An ME / CFS clinic cold focus on these treatments and start improving the lives of patients. It is folly to rely on CFS research for solutions when there are medical treatments in place today which have brought about thousands of recoveries from ME / CFS. Indeed the appalling state of CFS research means that a "miracle cure" or "miracle drug" which will magically cure all cases of ME / CFS is at least 15 - 20 years away or possibly even longer ; most patients cannot wait this long !!

3. The fact that bogus doctors and bogus clinics and alternative medicine practitioners are charging exorbitant fees to patients for useless treatments which are endangering the lives of such patients
As there is no proper medical treatment for ME / CFS and no ME / CFS clinic in Ireland many desperate ME / CFS patients are going to bogus doctors and bogus clinics and to dubious alternative medicine practitioners who are making ridiculous and fraudulent claims and charging exorbitant fees to ME / CFS patients. They have put patients on strange herbs, supplements and drugs which are expensive and have worsened the condition of most patients. There are cases of patients being admitted to hospital as a result of taking these bogus treatments. This is an unacceptable situation. The only remedy is for the Irish government to impose stricter regulations and licensing requirements on these bogus doctors and practitioners and close most of them down. And secondly set up a National ME / CFS clinic which will actually treat ME / CFS patients according to officially recognised and best international medical practises.

4. In the future, the clinic will become a source of foreign revenues for the Irish government and the exchequer
There are 200,000 people with ME / CFS in Britain and there are no ME / CFS clinics in Britain as of October 2006. This is likely to continue for another decade or more. The British government continues to refer ME / CFS patients to psychiatric clinics which are of no use to ME / CFS patients. There have been no reports of any improvement or recoveries of ME / CFS patients in such psychiatric clinics. In fact there are several reports of ME / CFS patients becoming worse after visits to such clinics. This is due to the fact that ME / CFS involves a dysfunctional immune system, serious viral infections of the muscles, brain and nervous system, endocrine abnormalities, cardiac abnormalities, etc.. The sad fact is that British patients are dying of ME / CFS because their government do not have proper ME / CFS clinics to treat them. This failure of the British government presents a market opportunity to provide a clinic which actually treats ME / CFS patients enabling them to recover.

The Irish ME / CFS clinic should have sufficient capacity to expand it's operations in the future, as it is certain that it  will attract thousands of patients from Britain and other European countries. This expansion could be accompanied by the building of two or three more ME / CFS clincs in other parts of the country in order to cope with strong and sustained domestic and foreign demand. Several European countries are continuing to neglect CFS patients, with the result that many are suffering and dying of the illness. The unpleasant truth is that government inaction, stagnation, and gross incompetence in relation to CFS diagnosis and treatment is disabling and killing patients in many countries. Patients are desperate for effective diagnosis and treatments in Europe, Russia, the Middle East, and Asia. This will result in increased business for the Irish clinic and a substantial inflow of foreign revenues for the clinic. These foreign revenues will directly benefit the Irish government and the exchequer. It will also benefit the local economy as foreign patients and their families stay in local accommodation and spend money on food, drink, transport and other services. This will prove a very profitable arrangement for the local economy, the Irish government and for private Irish investors who invest under the terms of a Health Trust  ( Click here for details about such a Trust ).

By investing in such a clinic the Irish government would be helping over 10,000  ME / CFS patients. As more and more Irish people recover from the illness this will reduce the cost of this illness to the Irish exchequer and taxpayer. Overall, the Irish government will benefit from a reduction in health and disability costs, and a large increase in foreign revenues and a substantial financial return on their investment.

5. The need for more effective Decision Support Systems (DSS) to achieve greater productivity, cost-efficiency and value for money in the Irish Health Service, and support the work of a national ME / CFS Clinic and Centres of Excellence for Cancer and other illnesses
The Irish Department of Health, the HSE and the CSO do not estimate the direct and indirect costs of chronic illnesses and disabilities. This is a remarkable failure given the massive sums of money spent on health each year. In 2008 the Irish government spent  € 14,861,000,000 on health and this accounted for 25% of the total government budget ¹. They also spent  € 17,538,000,000 on social welfare, and this accounted for 30% of the total government budget ¹. A significant proportion of social welfare spending would have been devoted to disability. Yet the Irish government has:

The Irish government informs people about the expenditures involved, and the importance of keeping taxes low, yet it has no means of analysing, tracking, monitoring, collating, categorising and deeply understanding the problems which it is seeking to address. No means for accurately measuring the productivity of personnel, medical technology, materials and resources. The Irish government has no idea where the money is going. The Irish government could benefit immensely from nationally and internationally integrated ERP and DSS systems which would help them to do the tasks mentioned above. It would also enable them to make better quality decision-making and a better allocation of resources and exercise better control of costs, value-for-money, productivity and resources.
Many of the world's most successful companies and healthcare systems have introduced such integrated DSS, ERP and CRM systems and this has enabled them to better serve their customers, and grow strongly in a highly competitive global marketplace. A better allocation of resources would enable Clinics and Centres of Excellence to attain the necessary resources to achieve their objectives and also make more efficient use of these resources over time.

References
1. The Department of Finance, Ireland.

Click here to view the proposed Structure and Organisation of this ME / CFS Clinic