Tuesday, 17 February 2015

The IOM Disaster

Taken from the ME Global Chronicle No 9 February 2015

The IOM recently published its report into ME and has renamed the illness to Systemic Exertional Intolerance Syndrome (SEID). This will be a controversial decision and will encounter considerable opposition from patients and doctors. Let us look carefully at the facts.

The name itself tells us nothing about the illness as many illnesses including Cancers and MS cause substantial “exertional intolerance”. Yet these illnesses do not have “exertional intolerance” in their name. The report accepts the illness as a serious biological illness but fails to accept this and quantify this in its diagnostic criteria. Unfortunately the new IOM criteria uses most of the same criteria used in the Fukuda criteria of 1994.

It uses a substantial reduction in physical activity and profound fatigue lasting for more than 6 months unrefreshing sleep and cognitive impairment. The addition of Orthostatic Intolerance being the only new addition to the criteria. What about the immune system abnormalities? the mitochondria abnormalities? the neurological abnormalities? the HPA axis abnormalities? the infections consistently found? the cardiac abnormalities? the genetic abnormalities? the gastrointestinal and microbiome abnormalities? These important biological factors were omitted, left out.

The IOM diagnostic criteria is far too vague, loose unclear and ambiguous. The IOM criteria cannot diagnose or treat any illness. The IOM criteria advises doctors not to carry out intensive biological tests to decipher the illness factors in the patient. This is extraordinary, as medicine and science is about identifying and establishing facts and not about making assumptions and presumptions regarding fatigue for 6 months or more.

The new IOM criteria does not deconstruct this complex multi-system illness illness into it’s constituent parts so as to diagnose and treat with precision. This means that patients will not get a proper of diagnosis of ME / CFS or SEID and thus they will not get proper treatments.

Millions of patients will continue to be left in a limbo and many of these will continue to be vulnerable to premature deaths as a result. The following list is a sobering reminder of what happened in the past when vague, ambiguous, unclear and loose criteria were used to diagnose the illness - http://www.ncf-net.org/memorial.htm

In addition the IOM criteria includes co-mormid illnesses in the diagnosis of SEID, and Depression and mental illness are included. This means many of those people with Depression and other mental illness will qualify for a diagnosis of SEID or ME / CFS. This will add these patients to the mix of SEID and ME/CFS patients and this will confuse doctors and researchers, and cause inconsistent research findings and further confuse the research field and the meta analysis of papers. It’s a disaster. It is this inability to accept well known biological makers for the immune system, mitochondria, neurological system, HPA axis, heart etc. which condemns doctors, researchers and civil servants to continue to repeating the same mistakes over and over again, while patients suffer, become more frustrated, and die.

The malign influence of some London psychiatrists continues in the field of ME / CFS and this is evident in the new IOM criteria. The emphasis on fatigue and exertion intolerance and the omission of biological markers proves this point. The excessive research monies wasted by the NIH and British government and other EU governments on CBT, GET and other psychiatric nonsense has robbed the field of quality research into biological factors for over 20 years. Yet despite these setbacks, there are many high quality research papers proving consistent biological makers in the illness.

There are some known biomarkers for the illness – http://www.me-ireland.com/ - Biomarkers - and some forward thinking medical clinics which use these and diagnose and treat the illness - http://www.me-ireland.com/ - Diagnosis and Treatment . The Norwegian government feels that the immune system abnormalities are important and is continuing to fund research into the use of Rituximab in ME / CFS and this should produce some results by the end of 2015. The Open Medicine Institute (OMI) is continuing to fund raise for high tech research into ME /CFS combining immune system, neurological system, gastrointestinal, genetic and endocrine factors in a large research project. This will produce some findings by the end of 2015. The Rituximab and Microbiome projects in Britain are due to begin soon. Also Dr. Lipkin’s microbiome study is to begin in the near future. These provide realistic hope in terms of identifying all biological markers for the illness.

The fine art of deconstructing complex, multi-faceted systems / illnesses into their component parts and understanding their nature and their dynamics and linkages with each other has been lost. The old educational style which focussed on the Trivium form of learning has been replaced with new types of education emphasising superficial analysis and learning, and hasty, inadequate solutions. The quick analysis, the superficial diagnosis, the speedy dismissal, the soundbite, the inability to listen carefully and to investigate, the shallowness of assumptions and presumptions, the lack of depth, the lack of curiosity, the lack of deeper facts and meaning, the lack of clarity are all too common today. This is blocking scientific and medical progress and condemning many people to mediocrity, low quality and failure, and is causing great suffering and frustration for many people worldwide. 

David Egan

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