Economic and social costs of CFS

Prevalence: In Ireland over 10,000 people  have CFS. In Britain, it is estimated that 200,000 people have CFS. In the USA, in 2004, the Centers for Disease Control (CDC)  estimated that 2.2 million people have CFS, the CDC report was published in the online science journal Population Health Metrics. 
Costs of illness: In 2003, researchers at the CDC reported  that CFS costs the US economy $9 billion per year in lost economic revenues and productivity, but this study was based on one small area (Wichita) and a national figure of 800,000 people having CFS  -  giving an average of $11,250 per patient in lost economic revenues and productivity. Using the new CDC figure of 2.2 million Americans having CFS, the loss in economic revenues and productivity for the US economy is approximately $24.75 billion per year (2.2 million x $11,250). The $24.75 billion loss for the US economy does not include health care costs or payment of disability benefits, which are likely to be substantial. When these figures are applied to Ireland, the loss in economic revenues and productivity is $112,500,000  ($11,250  x 10,000). For Britain this is $2,250,000,000 ($11,250  x 200,000). These represent significant losses to national economies. Yet even these figures are an underestimate as they don't take into account health care costs or payment of disability benefits. The total cost to the American economy could be as high as $50 billion a year. The disease CFS is inflicting massive economic costs on individual countries.

Approximately 50% of the people afflicted with CFS are highly skilled people, such as professionals, tradesmen, craftsmen, small business owners who could contribute much to the economy, society and their own communities. The cost of CFS is much greater than most other illnesses yet CFS research funding is very small when compared to these other illnesses  (this is investigated in some detail below). While funding for CFS research remains low or non existent, CFS will continue to inflict higher and higher economic costs on individual European countries, the European economy and the US economy.

In addition, CFS can be deadly, thousands of people around the world have died of CFS and health complications caused by CFS , see Memorial section. CFS bears a resemblance to Cancer and AIDS in the sense that CFS patients have died of opportunistic infections and certain cancers 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. Many CFS patients have died prematurely of heart attacks.

A nation's health should be seen by governments as an investment not a cost ; indeed an investment which can reduce economic costs and increase overall economic revenues and productivity over the medium to long-term.

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Lack of funding for CFS research

Research is very under-funded both in Europe and in the USA. In fact, in most European Union countries, the governments provide no funds for CFS research, and those European governments which do provide funding, provide very small amounts compared to other diseases and illnesses. 

American dimension
The fact that a large number of Americans suffer from CFS prompted the US Congress to fund research into CFS from 1989 onwards. The CFIDS Association of America places the total expenditure of the National Institutes of Health (NIH) on CFS research from 1990 through to 2003 at $78 million. For the same period, the expenditure of the Centers for Disease Control on CFS was $68 million. Compared to the research funding given to other illnesses, this is very small and inadequate for a complex disease such as CFS. Yet these figures are misleading, in the mid 1990's monies appropriated by the US Congress specifically for CFS research were illegally diverted into researching other illnesses by administrators within the CDC. This prompted a Department of Health investigation which found $12.9 million for CFS research  was unaccounted for or "went missing", this caused uproar and a scandal. Afterwards, the CFS research program was compensated for $12.9 million by the CDC, but the end result is that 4 years of valuable research time was lost. Over $140 million has supposedly "been spent on CFS research" by the NIH and CDC from1990 to 2003, but they made no progress with CFS during that time  -  they have not identified what causes the illness, there is no standard diagnosis, no adequate treatment. There is nothing to show for this $140 million. Many Americans, both patients and doctors are asking "What was this $140 million spent on ? " . Furthermore in 2004, the NIH and CDC refused funding and research facilities for genetic research into the causes of CFS.

The inadequate research funding is continuing to be a big problem in America. Let's look at the facts: in 2004, of the 175 disease research areas funded by the US National Institutes of Health (NIH) in 2004, CFS was 170th in funds awarded. The NIH gave temporal mandibular joint (TMJ) researchers 3 times as much money as CFS; Lyme's disease was given 5 times the money CFS was; Crohn's disease 9 times, anthrax research 17 times; asthma 50 times and AIDS 500 times as much  money as CFS. The NIH has several laboratories and whole institutes devoted to researching specific illnesses but none are devoted to researching CFS. In addition to this, the NIH reported funding 1,144 external research centers for fiscal year 2003 at a cost of $2.2 billion. They have funded 3 research centers for cystic fibrosis, 16 research centers for diabetes, 21 centers for AIDS research, 3 muscular dystrophy research centers, 2 autism research centers, 5 research centers that focus on mind-body research, 2 research centers for dietary supplements, but no research centres for CFS. This is outrageous considering that over 2.2 million Americans have CFS and many are dying prematurely of health complications caused by CFS.

No clear strategic plan for dealing with CFS
The US Department of Health, the NIH, the CDC have no clear strategic plan for dealing with CFS. Research funding is often wasted on investigating peripheral or secondary symptoms in CFS, which are unimportant and trivial, while research into the root causes of CFS has been refused funding. For example, in 2004, the NIH and CDC (USA) refused to finance vitally important genetic research into the main factors involved in CFS by Benjamin Natelson. This important research could shed light on the genetic factors underlying CFS, giving patients hope of gene-based cures for the illness in the near future. Thus CFS research has stagnated, and patients are forced to keep waiting and suffering (and dying). 

Some American Progress
CFS patient groups such as The National CFIDS Foundation in the USA (www.ncf-net.org), the American Association for CFS (www.aacfs.org)  and the CFIDS Association (www.cfids.org) have both made tremendous progress in research since 1998. They have financed private research which has and is continuing to investigate the root causes of CFS. Despite very limited funds, they have made more progress than the NIH and the CDC in the area of CFS research. The US government could have made more progress in CFS research if they had given the $140 million (mentioned above) to the National CFIDS Foundation, the American Association for CFS (www.aacfs.org) and the CFIDS Association, instead of giving it to the NIH and CDC.

European dimension
There has been a serious lack of funding for CFS research among European governments and the European Union. Individual European governments and the European Union also have no clear strategic plan for dealing with CFS.

Britain : The British government has wasted over £5 million on research for psychological causes for CFS when the scientific research from around the world has clearly shown and is continuing to show that CFS is a bio-medical or physical disease in much the same way Cancer, AIDS, Diabetes are physical diseases. In fact, CFS shares many similarities with AIDS, some Cancers and heart disease, and many CFS patients have died prematurely of opportunistic infections, certain Cancers and sudden heart attacks   -  see Memorial section  and  America's Biggest Cover-Up: 50 More Things Everyone Should Know About The Chronic Fatigue Syndrome Epidemic And Its Link To AIDS  by Neenyah Ostrom. The British government has wasted millions of pounds on Cognitive Behaviour Therapy (CBT) which has proven to be useless in treating CFS and has not delivered any recoveries from CFS. The British government was wrongly advised by psychologists that CFS is just a psychological illness. Since CFS is a "new" illness, and not much was known about it in the early 1990's, the British government was easily duped by unscrupulous psychologists hungry for research grants and money. 

When an illness is "new" and not much is known about it, and the research equipment and clinical diagnostic equipment are not advanced enough to view what is going on at the cellular and sub-cellular levels, and molecular levels, then it is customary to call such an illness a psychological illness, even though the illness may not be a psychological illness but a serious organic physical illness. For example, Multiple Sclerosis (MS) was originally called a psychological illness, Diabetes, Hypothyroidism, Alzheimer's disease, some Cancers, Lyme disease, Gilbert's syndrome, Hashimotos Encephalopathy, Chlamydia, Toxoplasmosis, several Autoimmune diseases, Coeliac disease and Addison's disease were all wrongly called psychological illnesses in the past, in the same way CFS is wrongly called a psychological illness. All of these diseases cause fatigue, and a lazy doctor or psychologist will always opt for the easy option of calling it a psychological illnesses. There are cases of doctors diagnosing depression in a patient when in fact the patient had cancer and died of cancer due to it not being diagnosed in time. People are dying of CFS and the health complications caused by CFS ; CFS is a disease, and scientific research has shown us an underlying disease process  (See Scientific Evidence section).

There is intense competition between scientists, doctors, PHD students, researchers and psychologists for government research grants and funding, and some psychologists used CFS as a ploy to increase funding for their own special areas and purposes, while ignoring the scientific evidence that CFS is a physical, bio-medical illness involving immune system break-down and serious viral and mycoplasma infections (See Scientific Evidence section). Psychology research has given us no insight into the causes of CFS, no diagnosis and no effective treatments, and no recoveries. But it has enriched certain psychologists in Britain who find mis-labelling diseases a very lucrative profession. The end result is that these psychologists have defrauded the British government and British taxpayer of £5 million. They have also wasted 12 years of valuable research time in Britain. This money, £5 million, should be refunded to CFS research in Britain, or given to organisations such as MERGE and the CFS Research Foundation in Britain which are carrying out high quality research into causes of CFS. 

British Progress
There has been a change in research direction in Britain since the publication of the Report of the Chief Medical Officer (Britain) in 2002. More funds are being pumped into research which investigates the physical root causes of CFS, and less money is being wasted on psychological research. CFS support organisations such as MERGE and the CFS Research Foundation in Britain have carried out valuable research into CFS since 2000. This has been financed by private donations. The British government if it wishes to make significant progress in researching an illness afflicting 200,000 Britons should extend annual research funding to MERGE and the CFS Research Foundation, to the tune £3 million a year, and discontinue all funding for wasteful psychological research into the illness. This would enable scientists to get to the root causes of CFS with greater speed and cost-efficiency.

As mentioned above there has to be a prioritisation of all government funding of CFS research and this prioritisation has to be based on sound scientific research from around the world. Prioritising research funding focuses research efforts on the root causes of CFS and avoids wasting money on researching secondary symptoms and "pet projects" such as psychological factors and CBT which have little or no value and are a complete waste of taxpayers money. Prioritising research funding imposes discipline, integrity and structure on the research process, and this can save valuable time and resources, and achieve results which may lead to a diagnostic tool for CFS and successful treatments.
A nation's health should be seen by governments as an investment not a cost ; indeed an investment which can reduce economic costs and increase overall economic revenues and productivity over the medium to long-term.

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Need for new medical drug trials in Ireland

Certain new drugs have been found to be very effective in the treatment of CFS in the USA, Canada, Mexico and Belgium. Most Irish doctors and the Irish Medical Council have never heard about these new CFS drugs. Their knowledge on these matters is 10 -15 years out of date. This lack of knowledge means CFS patients are being deprived of treatments which could greatly improve their condition and bring about recovery in a majority of cases. Many CFS patients have been waiting several years and decades, they cannot continue waiting, people are dying of CFS and the serious health complications caused by CFS.

The Irish government should put the following drugs / treatments into trial stage or approve them for prescriptions on the basis of successful trials in Canada, the USA, and Belgium, as soon as possible.

1. Ampligen   produced by Hemispherx Biopharma, Inc   http://www.hemispherx.net
   Ampligen is being tested by the FDA in the USA for CFS and AIDS cases. Ampligen is approved for CFS and AIDS treatment in Canada.
   Research articles    
   -  http://www.hemispherx.net/content/rnd/abstract_scientfic.htm
   -  http://www.hemispherx.net/content/rnd/drug_candidates.htm
   -  What is Ampligen ?
   - ' Chronic Fatigue Syndrome :  A Biological Approach '  by Patrick Englebienne and Dr. Kenny De Meirleir 

    

2. Elastase inhibitors
   Use of leukocyte elastase inhibitors to treat patients with CFS as well as MS due to its impact on RnaseL and STAT1.

   -	Cefoperazone  (Pfizer Pharmaceuticals, trade name Cefobid)  -  Dr. Kenny De Meirleir has shown that it can block the elastase activity which is involved in destroying the immune systems of CFS patients
   -	Beta-lactam based antibiotics act as leukocyte elastase inhibitors
   -	Boswellia  (Boswellic acid)

   Research articles   
   -  Total Exposure - Expanded Model for RNase L Fragmentation in CFS Uncovered; The National CFIDS Foundation Announces the Use of Elastase Inhibitors as a Potential Treatment for CFS Patients (2003)
   - ' Chronic Fatigue Syndrome :  A Biological Approach '  by Patrick Englebienne and Dr. Kenny De Meirleir 
   
   

3. MG132  to stop STAT1-alpha cleavage and degradation.
   Research articles   
   -  STAT1-alpha and p53 Deficiencies are Found in Patients with Chronic Fatigue Syndrome (2003)
   - ' Chronic Fatigue Syndrome :  A Biological Approach '  by Patrick Englebienne and Dr. Kenny De Meirleir 
   
   

4. Acclydine Therapy recommended by Dr. De Meirleir  (top CFS doctor and researcher)
   Research articles
   - ' Chronic Fatigue Syndrome :  A Biological Approach '  by Patrick Englebienne and Dr. Kenny De Meirleir 
   
   

5. Isoprinosine to strengthen the TH1 part of the immune system, highly recommended by Dr. Paul Cheney (Dr. Paul Cheney has successfully treated hundreds of CFS patients in the USA)
   Research articles
   Lecture given by Dr. Paul Cheney
   
   
   

6. Dr. Paul Cheney's recommendations  (Dr. Paul Cheney has successfully treated hundreds of CFS patients in the USA) 
   For sleep -  Klonopin (generic: clonazepam) and Doxepin Elixir (10mg/ml) and Magnesium 500mg.
   For mitochondria function and immune system  - Undenatured whey protein, Reduced L-Glutathione, B-12 Injections, Kutapressin.
   See complete medical protocol at : http://virtualhometown.com/dfwcfids/medical/cheney.html
   
   

7. Compulsory mercury tests for all CFS patients. Mercury is highly toxic to humans even in small quantities. Research has shown a link between high levels of mercury in the body and ME / CFS . Mercury can interfere with mitochondria function and deplete glutathione levels both of which are indicated in CFS. Mercury detoxification has led to some CFS recoveries.  
   Research articles:
   
   

8. Scientific trials of a strong anti-viral protocol for CFS patients  -  a combination of Transfer Factor, Coconut oil, Olive Leaf extract and MGN-3. These have no known side-effects. If these trials are successful they should be made available on prescription for all CFS patients.
   Research articles   
   -  www.chronicfatiguesupport.com
   
   

9. Treat Sleep problem and provide Neuroprotection 

Dr. Paul Cheney recommends shifting the brain from excess NMDA activity to GABA activity. GABA facilitates deep sleep and a healing state. Medical research shows that certain neurotransmitters are involved in sleep - GABA, Serotonin and Melatonin. CFS patients have been found to be deficient in one or two of these neurotransmitters. Medical treatment of this problem involves increasing the activity of these neurotransmitters in the brain. A medical doctor should closely supervise sleep or neurotransmitter therapy.
Dr. Paul Cheney recommends 2-3 of the following GABA enhancers:

A.  Stimulate GABA in the brain:
A medical doctor should closely supervise this sleep or neurotransmitter therapy. Your medical doctor should specify the combination of drugs, supplements and herbs below you should take for sleep purposes.

B. Stimulation of Serotonin in the brain and nervous system:
A medical doctor should closely supervise this sleep or neurotransmitter therapy.

Some medical drugs gently increase Serotonin levels in the brain. Molipaxin 75 -100mg  or  Doxepin Elixir (10mg/ml)  1 hour before bed-time.
OR
5-HTP 200mg, 2 hours before bedtime at night. Take on an empty stomach.

Tryptophan rich Foods
Take tryptophan-rich snack(s) during the day and before bed-time.
turkey, milk, avocado, banana, wheatgerm, pumpkin seeds, chicken, tofu.
Tryptophan is converted into Serotonin in the brain.
and
Take vitamin B-Complex and Fish oils / Omega-3 oils. This helps convert Tryptophan into Serotonin in the brain.
and
Get 8-10 hours of direct sunlight every day. In Winter use a special light box. Include walking and stretching in the direct sunlight. Sunlight stimulates the production of Serotonin in the brain. Walking and Stretching improves nerve conduction.

C.  Stimulate Melatonin in the brain:
A medical doctor should closely supervise this sleep or neurotransmitter therapy.
Melatonin tablets / powder 5 - 10mg, 1 hour before bed-time

Scientific / Medical research articles concerning increasing GABA, Serotonin, Melatonin activity for solving sleep problems in CFS

-  http://virtualhometown.com/dfwcfids/medical/cheney.html  (Dr. Paul Cheney's recommendations)

-  www.chronicfatiguesupport.com

- Go to the global database of scientific research : http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed and type in the words 
"sleep"+"chronic fatigue syndrome"   -  then view / save the results
"gaba"+"chronic fatigue syndrome"   -  then view / save the results
"serotonin"+"chronic fatigue syndrome"   -  then view / save the results
"melatonin"+"chronic fatigue syndrome"   -  then view / save the results
for a full listing of scientific research worldwide
Note: You could also use the words "chronic fatigue and immune dysfunction" or "M.E." or "myalgic encephalomyelitis" as these are other other names for the illness.

- Go to the Google search engine and type in the words 
"sleep"+"chronic fatigue syndrome"   -  then view / save the results
"gaba"+"chronic fatigue syndrome"   -  then view / save the results
"serotonin"+"chronic fatigue syndrome"   -  then view / save the results
"melatonin"+"chronic fatigue syndrome"   -  then view / save the results
for an additional listing of scientific research worldwide
Note: You could also use the words "chronic fatigue and immune dysfunction" or "M.E." or "myalgic encephalomyelitis" as these are other other names for the illness.

-  www.keephope.net 
-  http://www.diagnose-me.com/ta-q.html
-  www.remedyfind.com
-  Chronic Fatigue, Fibromyalgia and Lyme disease  (2nd Edition) by Burton Goldberg and Larry Trivieri

A nation's health should be seen by governments as an investment not a cost ; indeed an investment which can reduce economic costs and increase overall economic revenues and productivity over the medium to long-term.

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A CFS Clinic -  set up as a public-private partnership which would prove very profitable for both government and private investors

A diabetic goes to see the endocrinologist 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 or Heart Specialist 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 either attached to a major hospital or a private clinic and a local doctor.

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. 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. For example, most western European countries do not have testing equipment to detect 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. In addition, the majority of doctors do not know 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.

The problem could effectively be dealt with in the following manner:

A specialist CFS clinic 
Set up a specialist clinic devoted specifically to CFS. The objectives of this clinic would be three-fold:   
(a) provide a diagnosis of CFS    (b) provide treatment for CFS   (c) do research into the root causes of CFS. 
This clinic could be affiliated to a regional hospital and a University or cluster of Universities. This clinic would be organised and run along the lines of the Cheney Clinic and the Hunter Hopkins Center in the USA, the De Merleir Clinic in Belgium, and the Cologne clinic run by Dr. Gorter in Germany. All of these clinics are very busy (and very profitable) because they provide highly professional care and treatment for CFS sufferers. The clinic could be operated as a public-private partnership, the state would own a certain percentage of the shares and private investors and doctors would own a certain percentage. The clinic itself would be privately run and cater for both public and private patients. Both private and public patients would be charged the same fees, there would be no discrimination against public patients. The state would cover the costs of public patients.  In addition, the state could cover 50% of the cost of building the clinic and 50% of the costs of investing in new diagnostic equipment, lab facilities, storage facilities and computerised medical technologies. The clinic's high-tech medical technologies could also be used for diagnosing and treating MS patients, AIDS, auto-immune patients and some Cancer patients as specific immune system abnormalities and viral infections are a common factor in all of these illnesses. The clinic would consist of the following:

• 4 national and international medical experts in the field of ME / CFS 
  
  

• The following staff would be affiliated to the clinic on a sub-contract basis or patient requirement basis :  an immunologist, a virologist, an endocrinologist, a neurologist, a gastro-enterologist, a counsellor, a toxicologist, a cardiologist, a hepatologist and a clinical nutritionist. They would not be employed full-time or part-time, this would save the clinic money, allowing it to access only those resources which it needs at a given time.
  
  

• 6 highly trained and experienced laboratory technicians. They would work full-time on CFS cases.

• The following support staff:  two nurses and two administrators. One nurse and one administrator per 8 hour shift. The clinic would operate a 16 hour day schedule. 
  
  

• Opening hours  - 16 hours per day, 6 days per week. Diagnosis requires significant patient-doctor time and significant amounts of time testing samples. The clinic would be run as a private business delivering efficiency and value for customers (who are patients).

• CFS Diagnosis :   

  1. Before entry into the clinic CFS patients would be screened by the Irish Health Service for illnesses which are very similar to ME / CFS  -  click here for a listing of such illnesses . Foreign patients visiting the clinic would require proof of similar screening in their own countries.

  2. The patients' doctor or GP would forward all medical files of the patient to the clinic two weeks before each appointment. These files would be examined and analysed prior to interview so as to build up a profile of each patient.

  3. At the first interview patients would receive an intensive consultation with a doctor who is a CFS expert. The patient's condition, medical history and medical files would be analysed in some depth during the interview. All samples - spinal fluids, blood, tissue samples, saliva, etc. would be taken that day and throughout the next day if necessary. If further samples are required at a later stage, the patient would complete these within 2 weeks. The clinic would have state-of-the-art diagnostic equipment capable of finding the following:

  • RnaseL abnormalities and accompanying STAT1-alpha and p53 deficiencies in CFS patients. This would also include investigation of RnaseL abnormalities in MS, AIDS, auto-immune patients, and some Cancer  patients.
    
    

  • Taqman assay, otherwise known as a fluorescent tagged, triple-probed PCR technology for detecting the following :
    Viruses: HHV6a virus, EBV, CMV, Coxsackie virus, stealth virus (from a subclass of retroviruses called "spumaviruses"), JHK virus, Parvovirus B-19, Enteroviruses mainly Cocksackie B virus in the spinal fluids, brains, blood and nerve tissues of CFS patients.  These tests could also be done for MS, AIDS, auto-immune patients, and some Cancer  patients. 
    Mycoplasmas: M. fermentans, M. penumoniae, M. hominis, M. penetrans, M. pirum,  M. incognito in the spinal fluids, brains, blood and nerve tissues of CFS patients. These tests could also be done for MS, AIDS, auto-immune patients, and some Cancer  patients. 
    Chlamydia: Chlamydia pneumonia in the spinal fluids, brains, blood and nerve tissues of CFS patients. These tests could also be done for MS, AIDS, auto-immune patients, and some Cancer  patients. ;
    
    

  • Chronic Chlamydia pneumonia infection in spinal fluids, brains, blood and nerve tissues of CFS patients. These tests could also be done for MS, AIDS, auto-immune patients, and some Cancer patients.
    
    

  • Sensitive immune system analysis of CFS patients  -  MultiTest CMI (Cell Mediated Immunity), Natural Killer Cell Function Test, Total Absolute Natural Killer Cell count, TH1 / TH2 cytokine profile, measurement of neutrophil apoptosis. 
    These tests could also be done for MS, AIDS, auto-immune patients, and some Cancer  patients.
    
    

  • Genetic screening  -  genetic factors which make one susceptible to CFS 
    
    

  • Damaged mitochondria and defective ATP production
    
    

  • Thyroid gland abnormalities  -  detected by special TRH tests
    
    

  • Chronic Ciguatera poisoning
    
    

  • Liver screening and Glutathione status
    
    

  • Brain hypo-perfusion and lesions on the brain
    
    

  • High Beta 2 micro-globulin levels ; High levels of circulating plasma RNAs ; High levels of quinolinic acid, a serious neurotoxin ; High serum ACE levels ; Raised levels of urinary toxins  -  CFSUMI, beta-alanine, Tartaric Acid and Arabinose ; Coagulation abnormalities revealed by  Prothrombin Time (PT)  Activated Partial Thromboplastin Time (PTT) by photo-optical method,  Fibrinogen by nephelometry method
    
    

  • Thorough Pituitary gland and Hypothlamus analysis  -  both structural and functional
    
    

  • Thorough Adrenal gland analysis   -  both structural and functional
    
    

• Subcontract out highly complex or expensive tests which would require additional (expensive) equipment to foreign laboratories which use such equipment and highly skilled personnel. In this way we can leverage our telecommunications, technology and contacts to achieve the very best in testing and diagnosis for ME / CFS patients. Links would be established with laboratories with an international reputation for excellence.
  
  

• CFS Treatment :  

1. Determine exact number of abnormalities and dysfunctions in each CFS patient. Then determine the relevant Sub-group and accompanying treatment plan.

2. Establish best international practises in the diagnosis and treatment of CFS. Constantly upgrade and improve these practises over time.

3. Keep up to date with the latest CFS research findings from around the world. Use the research to refine and improve the diagnostic process and treatment process for CFS patients. 

• Set up and maintain a Computer Database of:   (a) all CFS research from around the world   (b) all leading CFS experts and their research works (c) all those people who have fully recovered from CFS around the world and the doctors who treated them
  

• Set up a computerised model of all of the cellular and sub-cellular dysfunctions and abnormalities involved in CFS, and how they are related to each other. Make it available to international researchers. Update this model regularly as new scientific information becomes available. Use it to identify the root causes, more accurate diagnosis, and effective treatments.

• Regular monitoring of patients so as to scientifically assess the effectiveness of medications and supplements.
  
  

• Carry out research into the root causes of CFS. Apply for funding from national and international governments, support groups and the general public. All research would be prioritised  -  see Research Prioritisation process
  
  

• Setting up drug trials and supplement / herb trials and closely monitoring their effectiveness. In particular, set up trials with the drug Ampligen in Ireland. Ampligen has been found to be effective and highly successful in the treatment for ME / CFS in the USA, Canada and Belgium. Ampligen is still being tested by the FDA in the USA, and it is available on prescription in Canada and Belgium.

• Public Relations:  Use the medical and scientific research from the Clinic and foreign clinics to inform the Media and Press, the Irish Medical Council and the government about ME / CFS and the fact that it is a serious debilitating physical illness. 
  
  

• Establish computer links and video-conferencing with 
  (i) similar clinics in other countries eg. USA, Canada, Australia, Britain, France, Belgium, Japan, South Korea
  (ii) leading researchers worldwide
  (iii) top CFS research laboratories around the world
  (iv) successful alternative medicine clinics worldwide
  (v) international pharmaceutical companies. 
  
  These computer links could be used to collaborate on diagnosis, scientific trials, treatment and research

• Paying for itself
  There are over 10,000 people with CFS in Ireland. There are also 12,000 people with MS, AIDS, some auto-immune diseases and certain Cancers who have similar medical abnormalities as CFS patients. These would include immune abnormalities, viral infections, amyloid formation and protein misfolding, auto-immune and inflammatory conditions. There is considerable overlap between these illness, they will require identical diagnostic equipment, research equipment and treatment equipment. This is high-tech equipment which is not yet available in Ireland and most EU countries in 2005. 
  
  The clinic should have sufficient capacity to expand it's operations in the future as it is highly likely that this Irish CFS clinic will attract patients from other European countries, from south America, the middle east and several Asian countries. These 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. It is to be expected that hundreds, possibly thousands of foreign patients will travel to an Irish CFS clinic which offers proper medical diagnosis and treatments. This will result in increased business for the clinic and a substantial inflow of foreign revenues for the clinic. Such is the extent and leverage of the technologies mentioned above they will have application in diagnosing and treating other illnesses, such as MS, AIDS, some auto-immune diseases, and some Cancers,  thus attracting even more customers or patients over time. This will prove a very profitable arrangement for the Irish government and private Irish investors.

A nation's health should be seen by governments as an investment not a cost ; indeed an investment which can reduce economic costs and increase overall economic revenues and productivity over the medium to long-term.

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What can be done to advance CFS diagnosis in Ireland

Most research equipment and clinical diagnostic equipment is ten or more years out of date in Ireland and Britain. The existing labs and equipment cannot test for the serious medical abnormalities found in CFS. Thus seriously ill patients cannot get an accurate diagnosis of their condition, and find it very difficult to get disability payments. If the diagnosis cannot be made then a treatment cannot be implemented. It's about time that there was new investment in new technology in the state's laboratories. The government needs to invest in new research and diagnostic equipment capable of finding the following:

• RnaseL abnormalities and accompanying STAT1-alpha and p53 deficiencies in CFS patients. This would also include investigation of RnaseL abnormalities and STAT1-alpha and p53 deficiencies in AIDS, MS and some Cancer  patients.
  
  

• Taqman assay, otherwise known as a fluorescent tagged, triple-probed PCR technology for detecting the following :
  Viruses: HHV6a virus, EBV, CMV, Coxsackie virus, stealth virus (from a subclass of retroviruses called "spumaviruses"), JHK virus, Parvovirus B-19, Enteroviruses mainly Cocksackie B virus in the spinal fluids, brains, blood and nerve tissues of CFS patients.  These tests could also be done for MS, AIDS, auto-immune patients, and some Cancer  patients. 
  Mycoplasmas: M. fermentans, M. penumoniae, M. hominis, M. penetrans, M. pirum,  M. incognito in the spinal fluids, brains, blood and nerve tissues of CFS patients. These tests could also be done for MS, AIDS, auto-immune patients, and some Cancer  patients. 
  Chlamydia: Chlamydia pneumonia in the spinal fluids, brains, blood and nerve tissues of CFS patients. These tests could also be done for MS, AIDS, auto-immune patients, and some Cancer  patients. ;
  

• Sensitive immune system analysis  -  MultiTest CMI (Cell Mediated Immunity), Natural Killer Cell Function Test, Total Absolute Natural Killer Cell count, TH1 / TH2 cytokine profile, measurement of neutrophil apoptosis.
  
  

• Genetic screening  -  genetic factors which make one susceptible to CFS 
  
  

• Damaged mitochondria and defective ATP production
  
  

• Thyroid gland abnormalities  -  detected by special TRH tests
  
  

• Chronic Ciguatera poisoning
  
  

• Liver screening and Glutathione status
  
  

• Brain hypo-perfusion and lesions on the brain
  
  

• High Beta 2 micro-globulin levels ; High levels of circulating plasma RNAs ; High levels of quinolinic acid, a serious neurotoxin ; High serum ACE levels ; Raised levels of urinary toxins  -  CFSUMI, beta-alanine, Tartaric Acid and Arabinose ; Coagulation abnormalities revealed by  Prothrombin Time (PT)  Activated Partial Thromboplastin Time (PTT) by photo-optical method,  Fibrinogen by nephelometry method
  
  

• Thorough Pituitary gland and Hypothlamus analysis  -  both structural and functional
  
  

• Thorough Adrenal gland analysis   -  both structural and functional

Doctors would then be able to diagnose CFS, identify the relevant sub-group the patient belongs to and offer effective treatment.  

Alternatively the government could (i) encourage a number of top American diagnostic firms and laboratories to locate in Ireland, creating jobs and future investment potential in the process, and then sub-contract out all CFS and MS diagnosis to these firms. Or (ii) sub-contract out all CFS and MS diagnosis to these firms by sending samples to these firms in the USA. 
Whichever of the three methods above  the government chooses, it can be assured of top quality and highly accurate diagnosis for these illnesses.

What can be done to advance CFS research in Ireland

More national government funding is required for effective CFS research which investigates the root causes of CFS and how they are related to the various abnormalities and dysfunctions found in CFS. The following research areas are in order of importance and funding priority:

1. Genetic factors in CFS. 
   Chart the changes in gene expression in CFS. In 2005, scientific researchers found abnormalities in 16 genes (Journal of Clinical Pathology, 2005 ; 58: 826-832). The following genes were abnormally expressed
   ABCD4, PRKCL1, MRPL23, CD2BP2, GSN, NTE, POLR2G, PEX16, EIF2B4, EIF4G1, ANAPC11, PDCD2, KHSRP, BRMS1, and GABARAPL1, IL-10RA.
   Click here for full research paper.  
   Further research and studies will reveal other gene abnormalities in CFS. The following areas would be vitally important : 

   -	The genetic reasons for the RnaseL abnormality and accompanying STAT1-alpha and p53 deficiencies and how all of this contributes to immune system dysfunction and other abnormalities found in CFS.
   -	Genetic reasons for increased  neutrophil  apoptosis, over-activation of the TH2 cytokines, and under-activation of TH1 cytokines, altered interferon production, low NK cell numbers and activity, weakened cell mediated immunity.
   -	Genetic reasons for the mitochondria dysfunction found in CFS
   -	The genetic effects of infection by specific viruses and / or mycoplasmas  and  exposure to certain toxins and heavy metals found in CFS patients

   Can these processes be blocked and / or can the pathways be restored to normal by gene based therapies ?  ;

    

2. RnaseL abnormality
   The reasons for the following:
   (i) the cleavage of the 80 kDa form of RnaseL into 37 kDa RnaseL. The accompanying high  LMW RnaseL (37 kDa)  to  HMW RnaseL (80 kDa) ratios found in CFS patients
   (ii) the cleavage of STAT1-alpha protein, and accompanying STAT1-alpha deficiencies
   (iii) the cleavage of p53 protein, and accompanying p53 deficiencies
   (iv) the abnormal caspase activity and disrupted cell apoptic process
   (v) The cleavage of RnaseL leads to  the presence of RnaseL fragments. 3 RnaseL fragments have been found to be significant: 
   Fragment 1, an ankyrin binding repeat domain which is known to interact with various transport proteins. It is is capable of NF-kappaB mimicry ; 
   Fragment 2,  the 2-5A binding fragment that has catalytic activity and thus is able to degrade RNA ; 
   Fragment 3, shares homology with chain A of Cdk6 (Cyclin dependent kinase). It  of Cdk6 chain A mimicry ;
   Research article:   Total Exposure: Expanded Model for RNase L Fragmentation in CFS Uncovered; The National CFIDS Foundation Announces the Use of Elastase Inhibitors as a Potential Treatment for CFS Patients (2003)
   (vi) Cell Apoptosis (cell death) increases initially in CFS and then is inhibited when the levels of Rnase L related fragments reach a certain point
   (vii) cleavage of Actin ;
   
   All of the above factors (i) to (vii) above interfere with the 2-5A synthetase / RNaseL pathway which is part of the anti-viral and anti-mycoplasma defense mechanism in cells. RnaseL destroys both viral messenger RNA and human messenger RNA. An over-active RnaseL destroys human messenger RNA preventing synthesis of essential human proteins and putting cells into significant dysfunction. Research by Suhadolnik, De Meirleir  and De Becker show that the abnormal RnaseL in CFS is over ten times as destructive as normal Rnase L, and this destructive phase continues indefinitely for years.
   
   What is causing all of these abnormalities and how is it doing it ? The chief suspects are: 
   - human luekocyte elastase (tests carried out by Dr. Kenny De Meirleir seem to confirm that elastase is the main culprit)
   - calpain 
   - protease
   - other proteolytic enzymes
   - ATP deficiency and abnormal mitochondria degeneration and destruction
   - environmental chemicals and toxins
   - mercury poisoning
   - other heavy metals
   - ciguatera poisoning
   - prolonged and excessive release of stress hormones. Part played by Adrenal gland burn-out, HPA axis dysfunction.
   - specific viruses: HHV6a virus, EBV, CMV, Stealth virus (from a subclass of retroviruses called "spumaviruses"), JHK virus,  Parvovirus B-19, Enteroviruses mainly Cocksackie B in spinal fluids, blood, brain, nerve tissue and muscle tissues:
   - specific mycoplasmas: M. fermentans, M. penumoniae, M. hominis, M. penetrans, M. pirum,  M. incognito. 
   - chlamydia: chlamydia pneumonia
   - does one of the above infections initiate an immune response which somehow leads to the cleavage of the 80 kDa form of RnaseL into 37 kDa RnaseL, the cleavage of STAT1-alpha protein, etc. and the beginning of CFS.
   
   Each of the above factors must be analysed in some depth in order to determine their part in the cleavage of the 80 kDa form of RnaseL and  the cleavage of STAT1-alpha protein, the abnormal caspase activity, the STAT1-alpha and p53 deficiencies, etc.
   
   Can this process be blocked and / or can the pathways be restored to normal ?
   Why is the drug Ampligen effective in many cases, and why is long-term treatment necessary ?
   
   

3. Effects of Rnase L (37 kDa RnaseL) :
   RnaseL destroys both viral messenger RNA and human messenger RNA. An over-active RnaseL destroys human messenger RNA preventing protein synthesis within cells and putting cells into significant dysfunction. Research by Suhadolnik, De Meirleir and De Becker show that the abnormal Rnase L (37 kDa RnaseL) in CFS is over ten times as destructive as normal Rnase L, and this destructive phase continues indefinitely for years. 
   What are the full effects of LMW RnaseL (37 kDa RnaseL) and RnaseL fragments on:
   - human messenger RNA
   - protein synthesis within cells and other cell functions  
   - mitochondria function & ATP production. Does it contribute to the abnormally high build-up of lactic acid in the cells of CFS patients ?
   - the liver
   - the immune system
   - the kidneys
   - growth hormone production
   - HPA glands
   - muscles
   - brain and nervous system
   
   How is the RnaseL abnormality and accompanying STAT1-alpha and p53 deficiencies related to other immune system dysfunctions such as 
   - suppression of TH1 cytokines and over-activation of TH2 cytokines
   - increased  neutrophil apoptosis
   - altered interferon production
   - low natural killer cell numbers and activity levels
   - weakened cell mediated immunity ? 
   Can this process be blocked and / or can the pathways be restored to normal ? ;

   According to Dr. Paul Cheney (who has successfully treated hundreds of CFS patients) the above effects form Phase I of CFS ; this can last from a few months to a few years.
   Can this process be blocked and / or can the pathways be restored to normal ? ;
   
   

4. Elastase is involved in CFS,  it can inflict the following : 

   -	cleaves insulin-like growth factors and their binding proteins. It induces a significant proteolytic cleavage of IGFBP-3 ? Why is the IGFBP-3 / IGF-1  ratio greater than 3.5 in many CFS patients ? Why is this leading to low growth hormone levels ?
   -	the cleavage of the 80 kDa form of RnaseL into 37 kDa RnaseL  (tests carried out by Dr. Kenny De Meirleir seem to confirm this)
   -	cleaves T4-binding globulin, adversely affecting thyroid hormones
   -	cleaves corticosteroid binding globulins, adversely affecting corticosteroids and adrenal hormones
   -	elastase regulates Stromal cell-derived factor-1 (SDF-1) / CXCR4 binding. This is very significant because Human Herpes Virus-6 (HHV-6) uses the CXCR4 receptor for infection. HHV-6 virus infection has been found in a majority of CFS patients
   -	cleavage of Actin. This has also been found in Behcet's disease.
   -	Elastase is also involved in chronic inflammation, and several inflammatory diseases

   Most of the above factors are involved in CFS. What are the full effects of elastase in CFS  -  immune system effects, hormone effects, HPA axis effects, neurological effects, liver effects, mitochondria effects ? Can it explain the wide variety of dysfunctions and abnormalities found in CFS ?
   What starts or brings about this destructive elastase activity ?
   Can this elastase activity be blocked and / or can the pathways be restored to normal ? ;
   
   

5. According to Dr. Paul Cheney (who has successfully treated hundreds of CFS patients) LMW RnaseL by destroying messenger RNA and blocking protein synthesis disrupts the production of liver enzymes and leads to impaired Liver detoxification. This leads on to a build-up of toxicity in the body which forms Phase II of CFS. This increased level of toxicity damages the brain and several organs and glands, worsening the effects of CFS. This can last from two years to ten years or more. 

   -	What are the full effects of LMW RnaseL ( 37 kDa RnaseL)  and RnaseL fragments on liver functions and detoxification in CFS patients ?
   -	Do CFS patients have impaired Liver detoxification and a build-up of toxicity in the body and if so, what is causing it ? Is this related to the depletion / deficiency of growth hormone and Glutathione found in most CFS patients ?
   -	Why is there a urinary marker called CFSUM 1 in CFS and how is it related to intestinal infection and toxicity ?

   Can these processes be blocked and / or can the pathways be restored to normal ? ;
   
   

6. According to Dr. Paul Cheney (who has successfully treated hundreds of CFS patients) the build-up of toxicity in the body becomes cumulative over time, damaging the brain, mainly the subcortex in the brain, the hypothalamus, the pituitary gland and adrenal gland, the immune system, muscles, cell functions, mitochondria & ATP production, and nervous system. This ongoing damage has a particularly devastating effect on CFS patients, causing severe fatigue. Thus patients remain in a state of sickness over many years. This forms Phase III of CFS ; this can last from three to twenty years or more. This toxicity leaves people highly susceptible to premature deaths from cancers, opportunistic infections and heart attacks.
   What are the full effects of this toxic build-up on the following :

   -	Hypothalamus, the pituitary gland and adrenal gland. Identify structural and functional defects, and hormonal deficiencies. Concentrate firstly on the lack of growth hormone, cortisol and anti-diuretic hormone, which are the main hormonal deficiencies found in CFS patients.
   -	Subcortex in the brain
   -	Mitochondria & ATP production. Including the abnormally high build-up of lactic acid in the  cells of CFS patients.
   -	Glutathione levels in the body
   -	Immune system function

   Does this build-up of toxicity play a part in the progression and worsening of CFS ?  
   Can this process be blocked and / or can the pathways be restored to normal ? ;

    

7. Mitochondria :
   Scientists have consistently found abnormal mitochondria degeneration and destruction in CFS patients (see Scientific Evidence section ). What is causing this ?
   Why is there defective mitochondria function in CFS patients ? Why are the mitochondria not completing the aerobic processes that metabolise glucose, to form complete oxidation ?  Why is there an abnormally high build-up of lactic acid in the cells of CFS patients ? Scientists already know that if mitochondria can't function properly, pyruvate is converted to lactate acid and other organic acids. Does this explain the intracellular acidosis and extracellular alkalosis found in CFS ?
   What exactly is causing this mitochondria dysfunction ?
   -  LMW RnaseL (37 kDa RnaseL)
   -  STAT1-alpha and p53 deficiencies
   -  Lack of human messenger RNA
   -  Lack of protein synthesis
   -  Deficiency of SOD and / or Glutathione. This would force the body to cut back on or shut down the aerobic energy conversion process.
   -  Glutathione reduction induces an increase in citrate levels, which can inhibit 2,3 DPG. Citrate is a very potent inhibitor of 2,3 DPG in the red cells. A deficiency of 2,3 DPG leads to a reduction of oxygen to the mitochondria.
   -  Alkaline blood (Alkaline blood inhibits oxygen transport to the mitochondria)
   -  Mercury poisoning. Mercury can interfere with and block Glutathione.
   -  The build-up of  toxins and heavy metals within the body
   -  Viral and / or mycoplasma infection
   -  DNA Gene Re-arrangement or Alterations in Normal Expression
   -  Growth Hormone Deficiency
   
   Can this process be blocked and / or can the pathways be restored to normal ? ;
   
   

8. Why is there Chronic Ciguatera poisoning in a majority of CFS patients ? ;
   Can this disease process be blocked and / or can the pathways be restored to normal ? ;
   
   

9. Brain :  
   - Reasons for brain hypo-perfusion and lesions
   - Reasons for dysfunction of the subcortex
   - Reasons for cortisol and serotonin abnormalities
   - Why is there excess NMDA activity in the brain and a deficiency of GABA activity ?
   
   Can this disease process be blocked and / or can the pathways be restored to normal ? ;
   
   

10. The full effects of the following infections in the spinal fluids, blood, brain, nerve tissue and muscle tissues of CFS patients:
    specific viruses: HHV6a virus, EBV, CMV, Stealth virus (from a subclass of retroviruses called "spumaviruses"), JHK virus,  Parvovirus B-19, Enteroviruses mainly Cocksackie B.
    specific mycoplasmas: M. fermentans, M. penumoniae, M. hominis, M. penetrans, M. pirum,  M. incognito. 
    chlamydia: chlamydia pneumonia  
    
    

11. Are the crimson crescents in the mouth related to an ongoing viral infection ? Is it a form of Kasposi's Sarcoma ?
    
    

12. Why is there a unique urinary marker called N-methylpyrrolidine found in a significant number of CFS patients ? This is associated with  amyloid formation and protein misfolding, is this part of CFS ? The expression of the Huntington's protein in CFS patients,  using gene expression analysis at the CDC points towards amyloid formation and a neuro-degenerative process in CFS.
    Is this related to the RnaseL abnormality, STAT1-alpha and p53 deficiency or to elastase activity or to Chronic Ciguatera poisoning ?
    Can this disease process be blocked and / or can the pathways be restored to normal ?   
    
    

13. The interactions between all of the above abnormalities ;

If there is a lack of CFS researchers or technological resources within a country then the national government should sub-contract out research to top researchers in other countries who will be able to carry out the research work and deliver the results.

(c) Give CFS research the same priority in funding as AIDS research. Why ?  Research by Anthony Komaroff of Havard Medical School and other Harvard researchers confirmed that brain abnormalities in CFS were very similar to those found in AIDS Dementia Complex ( Richard B. Schwartz et al., ' SPECT Imaging of the Brain: Comprison of Findings in Patients with Chronic Fatigue Syndrome, AIDS Dementia Complex, and Major Unipolar Depression ' American Journal of Roentgenology 162 (April 1994): 943-51 )
CFS shares many characteristics with AIDS  -  see America's Biggest Cover-Up: 50 More Things Everyone Should Know About The Chronic Fatigue Syndrome Epidemic And Its Link To AIDS  by Neenyah Ostrom   and people are dying of CFS. Viruses such as HHV6a virus have been found in CFS patients and AIDS patients. Research now shows that HHV6a virus has a symbiotic relationship with the HIV virus and speeds up the progression to full blown AIDS. Research findings into CFS can be used for AIDS research and future CFS findings would prove helpful to AIDS research.

(d) Research Standards
make all CFS research funding dependent on meeting the following standards:

• Researchers must divide CFS patients into internationally recognised and standardised Sub-groups for research purposes. This would be done via testing and diagnostic markers.
  
  

• Ensure that specific international standards for taking, storing and examining samples from CFS patients are applied in all CFS research cases. This must be applied for all CFS research in all countries. Standardisation produces more accurate and consistent results.
  
  

• The new research must provide new and deeper insights into the area in question and how it contributes to other abnormalities and to the dynamics of CFS. Research must add value to past research not just duplicate it.
  
  

• Several areas of CFS  eg. RnaseL abnormalities, genetic abnormalities, mitochondria damage and virus, mycoplasma infections, and HPA axis dysfunction, etc. should be investigated simultaneously in patients so as to understand the complex interactions involved in CFS. 
  
  

• The whole CFS research field is full of research results which partially explain just one abnormality found in CFS, what about it's relationship to all of the other abnormalities ? We must improve upon this. There must be a new research requirement  that individual scientific findings and trials provide us not just with an understanding of one abnormality or dysfunction but an understanding of how one abnormality leads onto other abnormalities and so on. Each scientific trial must provide us with a deeper understanding of the area investigated and it's role in other abnormalities and the complex interacting systems involved in CFS. This will involve greater collaboration and cooperation between researchers investigating different areas of CFS.
  
  

• Some researchers have created patents for CFS diagnosis and failed to share research findings and material with other researchers in the field. Government's in the EU and USA should make it a legal requirement to share such research results with other researchers, the global scientific community and the general public, and subject the research to peer review. This knowledge would give scientists and researchers a greater understanding of what causes CFS, where to focus research efforts and how to develop an effective treatment.
  
  

• All government funded research should be subject to regular random audits so as to ensure that funding is being used for the research purposes specified in the application forms.

A nation's health should be seen by governments as an investment not a cost ; indeed an investment which can reduce economic costs and increase overall economic revenues and productivity over the medium to long-term.

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What can be done to advance CFS research in the European Union

Implementing a clear strategic plan for dealing with CFS

(a) The European Union government should introduce a totally new approach to CFS research. Firstly, in all government funding of CFS research there should be a prioritisation given to the root causes of CFS. Click here to view a listing of such research priorities. Prioriti