Proposed Structure and Organisation of ME Clinic
" What can we learn from those people who have recovered from ME and those who have improved significantly to resume work ? What can we learn from those dedicated, patient, considerate and highly professional doctors who treated them ? "
Organisation, Structure and Financing of ME clinic
(i) a state financed clinic which would be financed by the Irish government
(ii) a private clinic (national or foreign based) which sets up in Ireland. And receives grants, investment or other financial assistance from the Irish government. This would be a system of private - state partnership, a joint financing arrangment.
This Clinic would use the diagnostic and treatment protocols used in the most successful ME Clinics where thousands of patients have recovered from ME. The building of this clinic and the provision of medical equipment would be financed by the Irish government or a private clinic or by both the Irish government and the private clinic, in a public-private partnership. The operation of the clinic and payment of personnel would be financed by by the Irish government or a private clinic or by both the Irish government and the private clinic. At the moment there is plenty of space and a number of excellent sites inside the grounds of Merlin Park Hospital in Galway city in the Republic of Ireland. This is an ideal location for the following reasons :
Cost-Benefit Analysis: the cost of building an ME Clinic would be 45 million euros, which would include a modern clinic with several rooms, and advanced diagnostic equipment. Running it would cost a few million euros per year. Yet the total cost of the ME illness at present to the Irish economy is estimated at 1.83 billion euros per year. This is a significant loss to the Irish economy. (See Why build a Clinic section).
Diffusion of Costs and Expanding the Return on Investment
The clinic will result in savings of tens of millions of euros per year, as more patients improve and recover. And would over time approach the figure of 1.83 billion euros per year in savings. The clinic will also pay for itself in many other ways. Initially, the clinic will involve considerable outlay of funds to acquire state of the art diagnostic equipment and treatment equipment, yet the investment itself will enable the clinic to differentiate itself from other clinics and hospitals in Europe in terms of quality, accuracy, precision and excellence. This will attract more customers (patients) to the clinic and build a reputation which will sustain high customer numbers over time.
Furthermore the clinic could share it's facilities and resources for those with other illnesses. Specifically, the equipment in the ME clinic could be made available to the hospital itself and to other nearby hospitals and clinics for those with other neurological illnesses, endocrine and glandular illnesses, autoimmune illnesses, head injuries, internal injuries, and cardiac illnesses subject to designated time usage and demand levels. This would ensure that the equipment is used regularly and there is adequate payback for the intitial capital investment in the equipment, facilities and personnel. The demand for this will grow as population continues to grow, and as a higher percentage of the population ages, and and more and more people become ill or have accidents.
All of the above factors would guarantee an excellent return on investment over the long-term.
Before setting up the Clinic we propose that there would be a series of meetings between top ME experts and doctors from around the world and (i) senior officials from the Department of Health in Ireland (ii) senior civil servants from the HSE and NHS (iii) the Ministers for Health from Ireland (iv) representatives from private ME clinics wishing to set up in Ireland, and representatives from our organisation and other ME support groups (v) representatives from the Irish Medical Council and the Irish Medicines Board. This would be a Fact Finding Mission and Consultative process whereby these parties would examine the diagnostic tests and treatments and medical drugs and supplements used in the most successful ME clinics around the world. This would include the following:
North America and South America
Australasia, Asia and Africa
The top 25 ME clinics in the world above are focussed on diagnosing and treating the biomedical, biological and physical disease processes in ME. Their treatments often include multi-treatments or several treatments at the same time to treat diagnosed medical abnormalities and dysfunctions and infections.
The clinics above are international centres of excellence for treating ME, and their knowledge and insights would prove invaluable to this Irish clinic. The Irish team would analyse and discuss and debate the workings of those ME clinics which have successfully treated ME patients. From this consultative process, a detailed plan would be drawn up for a ME Clinic involving the following:
(i) how best to proceed with an ME clinic in Ireland, whether it is a state clinic, a private clinic or a state-private partnership clinic. The staffing, equipment and resource needs, and how to manage and operate such a clinic using best international practises.
These techniques, methodologies and structures would be constantly updated and improved over time to take into account new developments in the diagnosis and treatment of ME. This would provide Irish ME patients with the best treatments available, treatments which have been medically proven to work, bringing about total recoveries in the majority of cases.
The following staff would be employed full-time or part-time OR subcontracted by the clinic OR their services hired on a case-by-case basis from a nearby hospital, clinic or medical practise.
- medical doctors who are knowledgeable about ME
The support staff: 6 nurses, 1 receptionist, 1 administrator, 1 exercise technician, 2 radiologists to run scanners, 3 laboratory technicians to test samples. Nurses and / or doctors would take samples from ME patients. Clinic opening hours - 9 hours, 6 days per week.
Buildings & Equipment Resources
Necessary equipment would include
While samples could be taken from patients and sent to specialist private laboratories for:
While the following diagnostic services could be contracted out to nearby hospitals:
Inpatient facilities for severely disabled
The location of an ME clinic within the grounds of Merlin Park hospital in Galway city would be strategically important. Merlin Park Hospital typically has 15 - 20 beds free per week. These free beds could be made available to severely ill ME patients. Up to 20% of ME patients are bedridden and are very disabled. Another 20% have moderate to severe mobility impairments. There is abundant space in Merlin Park Hospital grounds for expansion, and it should be possible to build an inpatient facility for the ME clinic to accommodate 60 patients. This inpatient facility could be attached to both the ME clinic and Merlin Park Hospital and avail of hospital personnel and resources. Inpatient stays could be limited to 4 days so as to avail of thorough diagnostic services and accompanying treatment assessments. This 4 day time limit would enable more patients to be admitted over the course of a month, a year, thus ensuring a high throughput over time.
ME Diagnosis :
(1) Self referral or family referral or GP referral to the ME Clinic would be accepted.
(2) Exclusionary Tests. After referal to the clinic, the GP's and hospital consultants of ME patients would supply the clinic with the full medical files of each ME patient. This ideally would be done electronically or through the Internet. ME patients would be screened for illnesses which are very similar to ME - Illnesses very similar to ME & Co-existing and co-mormid Illnesses with ME
All of this would help separate those who have ME from those who have other illnesses with similar symptoms to ME.
(3) At the first interview patients would receive an intensive consultation with a doctor who is a ME specialist. The patient's condition, medical history and medical files would be discussed and analysed in some depth during the interview. At this interview the ME specialist would use all of the following 3 medical diagnostic protocols:
Overview charts of chronic state of ME / CFS would also be used to help identify and track the constituent parts and dynamics of this complex illness. Click on the following link for diagrams depicting the chronic state of ME / CFS
All samples - blood, spinal fluids, nerve tissue, muscle tissue and intestinal tissue samples, urine, saliva, etc. would be taken in one day and then stored. This would be done with the assistance of the ME specialist and the nurse. These samples would be either sent to the laboratory in the clinic or to the local hospital or sent to national or international laboratories for tests. Some appointments may have to be made in a general hospital, for example, MRI / CAT / PET scans of the brain and special neurological tests. These appointments could be set up in a hospital near to where the patient lives and expedited within 4 weeks of the patient visiting the Clinic. This systematic scheduling of tests and scans would save the patient's time and the doctor's time enabling them to make a diagnosis and establish which infections, abnormalities and dysfunctions are present inside 4-5 weeks.
(4) Assessment of Diagnostic tests
(a) Determine if the person actually has ME through identifying the exact number of infections, biological dysfunctions and abnormalities present in the patient, and correlation of these with International Diagnostic criteria mentioned above.
(b) The phase of the illness. Tests on 285 ME patients and 200 controls in 2013 by Hornig et al. in New York show that there are significant differences in biomarkers between patients who have the illness for 3 years or less, and those who have it for more than 3 years. This explains the slight differences between patient groups which consistently appear in scientific studies. (Preliminary findings of Hornig et al., September 2013). This ties in to the findings of Dr. Paul Cheney who has stated there are 3 phases of the illness - phase 1, 2, 3. This is important as ME progresses over time, and the patient usually develops multiple biological dysfunctions and abnormalities and can become very disabled.
(c) Subgrouping: based on infections and biological abnormalities and dysfunctions found. And other relevant factors such as: - what phase is the patient in, how long does he/she have the illness ? is the patient in remission or having a relapse ? does the patient have a co-morbid or co-existing illness with ME ? what infections does the patient have and where are they located ? is the patient severely ill, moderately ill or mildly ill. Was it gradual onset ME or rapid onset ?
5. ME Treatment
Elimination of any infections and toxins should be the first treatment option, followed by or combined with immune system normalisation, resolving of sleep problems and HPA axis and Neurological treatments, and other treatment options depending on the results of the diagnostic tests. Combining treatments such as treatment for immune sytem abnormalities with ani-viral or anti-mycoplasma or anti-pathogen treatment may achieve better results for some patients.
Treating factors which have high probability of being the root cause
Further Treatment Measures
(6) Research into the root causes of ME
Research Prioritisation process: The cost of ME is much greater than most other illnesses yet ME research funding is very small when compared to these other illnesses (this is investigated in some detail below). While funding for ME research remains low or non existent, ME will continue to inflict higher and higher economic costs on individual European countries, the European economy and the US economy. The Clinic could serve as a focal point for ME research in Ireland. The Clinic could be allocated a ME research grant every year and the Clinic's ME experts would decide which research projects they wish to finance in Ireland and Britain. All ME research funding would be prioritised - see Research Prioritisation process . This prioritisation process would focus exclusively on the root causes of the illness and not the secondary symptoms.
International collaboration would include the establishment of computer links, network links (Intranet, Extranet, VPN) and video-conferencing capabilities with the following:
These computer links could be used to collaborate on diagnosis, scientific trials, treatment and research. This would serve to further refine diagnostic and treatment protocols.
© Campaign for an Irish ME clinic. Charity number APP 21042.