Guest Post from Wendy Boutilier - ME Awareness

May 12th International Awareness Day for Myalgic Encephalomyelitis 

On, 13th June 2006, the inquest into the death of Sophia Mirza was held in Brighton Coroners Court, England.  The cause of death was stated as

'The verdict was Acute aneuric renal failure due to dehydration arising as a result of CFS' 

Two pathologists could not agree which name to use - CFS, ME or ME/CFS.   In the end it was stated that CFS is a modern word for ME.  This is why CFS was used on the death certificate.

The pathologist also said –

'ME describes inflammation of the spinal cord and muscles. My work supports the inflammation theory. There was inflammation in the basal root ganglia.' 

REF:  http://www.investinme.org/Article-050%20Sophia%20Wilson%2001-RIP.HTM

Myalgic Encephalomyelitis also known as Chronic Fatigue Syndrome, is a controversial illness.  ME or CFS has an image problem. Sufferers are often derided as malingerers.  Many people hear the word “fatigue’’ and think sufferers are merely tired.

In the 1980s, when alarming numbers of young career minded adults complained of a virus they couldn’t shake and were diagnosed with CFS, it was dubbed `yuppie flu’’. That flippant label stuck.

Adding to the confusion is uncertainty in the medical profession: is ME / CFS a disease of the body, or of the mind? No consensus has been reached.  For decades, the Medical Profession has laughed at us, changed our diagnosis to a bogus Chronic Fatigue Syndrome, Yuppie Flu, Bodily Distress Syndrome along with other equally demeaning names.  They have kidnapped our children and refused to allow parents or outside legal help to interfere with what they think is a cure.  They have in fact, compromised the health of these young PWME even further by using suspect treatments, inevitably leading to their premature death.

We have become the only patient community who are not allowed to be sick.  Due to our limitations we are physically restricted in our activities.  We are the “invisible”, the so-called “hypochondriacs”, the “complainers” and their ears have shut down to our cries for help.  

This illness is a neurological condition called Myalgic Encephalomyelitis or ME. There are many who think it is not real and many others, even within the medical profession, who think it is a psychological condition best treated with enforced exercise, which only worsens its effects. The extreme end of the condition is virtually unknown to even the most gifted and caring of the medical profession who pass the ball to the psychiatrists.  Too many of those doctors and lay people who acknowledge the illness, often refer to it by the ridiculous name "chronic fatigue syndrome", which is almost as damaging to ME sufferers as the symptoms we suffer.  Many have suffered and died because of the unforgivable actions, and also the unforgivable inaction, of members of the medical profession.  Severe cases are committed to mental institutions to treat an illness that is purely physical and never recover from the damage.  Being treated by psychiatrists when physicians are needed working from the results of cutting-edge studies.

The question we ask is obvious: how many people with ME have to die before our illness is taken seriously and huge, well-focused efforts are made to cure it through properly funded biomedical research?

Patient advocates argue that too much emphasis is placed on psychological and psychiatric issues and not enough on the biological. The US Centre for Disease Control reported that patients were sicker and had far greater disability than those with cardiac disease, chronic obstructive lung disease and depression.

 

Professor Kenny De Meirleir is one of the world’s leading researchers of ME. At a conference in Adelaide, the Belgium-based scientist said he believed ME was caused by many different diseases.  Professor De Meirleir said patients suffered a chronic over-stimulation of an increasingly dysfunctional immune system.  “ME is a serious, legitimate illness, devastating to those who have it, with a slow and uncertain recovery for many.’’

Dr Meirleir also stated “the spectrum of disease extends to the wheelchair and the bed-bound and has a significant mortality caused by both the often severe effects of the illness and by suicide.”
https://www.youtube.com/watch?v=IOflARSgNnE 

20 web seminars with Dr. Kenny De Meirleir 
http://www.wpinstitute.org/news/news_current.html 

Facts:

Myalgic Encephalomyelitis (ME) has been classified as a disorder of the central
nervous system since 1969 – (World Health Organization International Classification of
Diseases) WHO ICD 10 G 93.3

The renaming of ME to Chronic Fatigue Syndrome (CFS) in 1988, giving misplaced
emphasis to “fatigue”, trivializes the substantial disability of the disease – which
can extend to the wheelchair or bed-bound requiring 24 hour care
ME/CFS is characterized by neurological, immunological, gastrointestinal,
cardiovascular and musculoskeletal features – severe forms can present with
paresis, seizures, intractable savage headaches and life threatening complications

Amorphous definitions and diagnostic symptom criteria have contaminated study
cohorts and corrupted research data – researchers and clinicians participating in
the 2005 Adelaide ME/CFS Research Forum unanimously endorsed the adoption of the
acclaimed 2003 Canadian Clinical Criteria

ME/CFS may include clinical syndromes linked to infectious agents and toxic
exposures – incl. Epstein Barr virus, ciguatoxin, organophosphates and
organochlorines

Prevalence estimates are 235-700 per 100,000 affecting all socio-economic and
ethnic groups, and men and women of all ages  – more prevalent than AIDS,
lung or breast cancer

Disease impact  – quality of life equivalent to late stage AIDS, chronic
obstructive lung and heart disease and end stage renal failure
Some experience recovery (average 7yrs), some partially recover and a
significant proportion (25% 20) are permanently incapacitated

Biomedical Abnormalities:

Immune System, including:
• chronic immune activation and dysfunction, evidence of persistent
viral infection  (enteroviral, EBV and HHV),
activation of the 2-5A anti-viral pathway, low natural killer cells and
cytotoxicity, T-cell abnormalities, proinflammatory
cytokines and inflammation, increased cell apoptosis (death) and allergy.
• abnormal immuno-genetic expression
Brain/Central Nervous System, including:
• objective measurement of dysfunction  –deficits in working memory,
concentration, information processing, autonomic function (incl.
neurally mediated hypotension and orthostatic intolerance)
• abnormalities –regional brain hypoperfusion by SPECT, white and gray
matter abnormalities by MRI, inflammation, hypomyelination, neurotransmitter and metabolic
dysfunction by MRS/PET and abnormal spinal fluid proteins
• abnormal neuro-genetic expression
Endocrine System:
impaired activation of the hypothalamic-pituitary-adrenal (HPA) axis and abnormalities of neuroendocrine-genetic expression
Heart and Circulatory System: hypoperfusion, impaired
vascular control  (incl. abnormal response to acetylcholine), low blood
volume, vasculitis  (incl. raised oxidative stress, inflammation and
arterial stiffness) and heart dysfunction
Muscular: structural and biochemical abnormalities including
impaired muscle recovery after exercise (exercise responsive gene expression
abnormal, worsening after exercise)
Others: gastrointestinal dysfunction including food intolerance and IBS, mitochondrial dysfunction including abnormal mitochondrial
associated gene expression and ion transport channelopathy.

by Wendy Boutilier for #May12BlogBomb