The War on M.E. supported by our CFS and CFIDS organizations?

[Guest guest]

John Anderson <truthshineon

Via CO-CURE

 

The War on M.E.

supported by our CFS and CFIDS organizations?

 

The invention of the CFS term and its vague definitions have been a terrible

insult and injustice to the human rights of patients suffering systemic

medical neglect of the most debilitating epidemic disease currently sweeping the

planet.  Now that awareness of the history preceding the imposition of this

damaging terminology has become well known around the world, the WHO classified

and

scientifically confirmed disease Myalgic Encephalomyelitis and its

definitions remain the only legal and moral terminology acceptable.

 

The WHO ICD and the CDC must update the neurological classification of ME as

confirmed by the Ramsay, Canadian Consensus and Hyde definitions, and they

must remove Chronic Fatigue Syndrome from the same neurogenic category - CFS by

its various definitions is not a neurological condition nor a synonym for

ME.  CFS is a diagnosis of exclusion and therefore it does not describe any

disease process, it is just a label for any undiagnosed condition presenting

with

chronic fatigue as a symptom.  All patients deserve a proper medical diagnosis,

not a CFS label and misguided psychiatric interventions that do cause harm to

those suffering from neurological ME.

 

The trivialising and insulting term CFS has resulted in the loss of 20 years

funding for thorough research and treatments - this funding has been wasted on

useless fatigue and behavioural studies and the distracting invention of the

biopsychosocial model and functional somatic syndromes, despite the 50 years

of increasing scientific and genetic evidence for the serious pathophysiology

of Myalgic Encephalomyelitis.  The correlation

of outbreaks of ME and Poliomyelitis that were documented from 1934 and which

provide important clues to the aetiology of the disease have also been

negligently overlooked.

 

The government needs to be reminded of its legal and constitutional

obligation to urgently fund biomedical research and education of the medical

community

to uphold the rights of ME patients to be diagnosed and treated with as much

dignity as any other severely disabling neurological condition is awarded. 

Further, any " fatigued " patient who does not fit the ME diagnosis has the right

to an accurate diagnosis and treatment

of the underlying medical condition that is currently being mislabelled as

CFS.

 

There is no formal education of the medical community and doctors are so

misinformed, untrained and inexperienced that they cannot diagnose and treat

these

severely ill patients in the mistaken belief that they suffer from some

unimportant fatiguing state they only know as CFS.  Some patients have lost

their

lives to ME because they were unable to find a doctor who believed in them.  So

many of us struggle to find a doctor who knows anything about this disease or

how to treat it and we are left to manage this disease ourselves.  Where are

our basic human rights here?

 

The information promoted by the CDC's CFS website, its PR marketing company

the CFIDS Association of America (CAA), and their CFS Awareness Campaign is a

huge disservice to all patients and researchers.  They incorrectly state that

there are no diagnostic tests or treatments, there is no mention of ME as the

distinct neurological disease recognised since 1956 and classified by the WHO

since 1969, no justification for the invention of CFS to replace ME in 1988, or

serious investigation of the missed diagnosis of other conditions hiding

behind the obfuscation of CFS.

 

There is no mention of the internationally acclaimed Canadian Consensus

Guidelines, the Ramsay and Hyde definitions, or the documented epidemics dating

back to the 1934 Los Angeles outbreak - yes the first recorded outbreak of ME

occurred in

America!  The " evidence " is further skewed by the flawed CDC genetic research

which selectively supports " allostatic stress " - while ignoring the

neurological, immune, cardiac, mitochondrial dysfunction and evidence of

persistent

viral infection found by Dr

Jonathon Kerr's genetic research published in the Journal of Clinical

Pathology.

 

Changing the name to Myalgic Encephalopathy with a CFS based definition is

another unjustified and damaging name change.  Current research presented as

recently as the 8th International IACFS/ME Conference supports the historic name

and definitions of Myalgic Encephalomyelitis with more evidence of CNS

inflammation, vasculitis and myelin damage.  However " encephalopathy " can be

taken to

mean " altered brain state "

which together with a CFS based definition will only compound the

misconceptions and invite further irresponsible psychiatric interventions that

have

damaged patients and taken precious funding away from essential biomedical

research.

 

And so it will get worse.  The CDC will find a way to inflate the numbers of

fatigued people to fit their made-up definition of Chronic Fatigue Syndrome

under the name Myalgic Encephalopathy and the CAA will get more funding for an

even greater PR campaign.  The CDC will then justify the need for even more

government funding for research into this alleged " allostatic stress syndrome " ,

which will only result in psychiatrists also benefiting financially to do even

more irrelevant fatigue and

behavioural studies, while ignoring the real suffering and growing death toll

from Myalgic Encephalomyelitis.

 

It is " all in their heads " if they believe that they can cure a neurological

disease with CBT and GET.  It is very concerning that so much obvious

misinformation can be presented as fact.  As a consequence I am beginning to

question

whether the media hype about the potential " bird flu " epidemic is nothing more

than a fear tactic to cover the real ME pandemic that is currently

devastating millions of lives around the world.  They are

spending billions of dollars stockpiling antiviral medications for something

that may never happen, and failing to provide antiviral and other treatments

now for those desperately suffering or dying from this debilitating disease.

 

It is also a concern that are there still so many CFS and CFIDS charities

perpetuating the misinformation and myths about CFS.  Why do so many of these

organizations remain ignorant of the most critical and basic facts which have

damaged all of us for

the last 20 years?  If they do not know the 70 year history of Myalgic

Encephalomyelitis and its epidemic association with Poliomyelitis, and are not

promoting Myalgic Encephalomyelitis and its definitions, the longstanding WHO

neurological classification, or declaring the scientific evidence and diagnostic

tests that do confirm the disease, then who are they advocating for and how do

they justify their existence?

 

There are genuine ME charities and some very dedicated researchers that

desperately need our support and deserve our gratitude for their tireless

efforts

advocating for the recognition and scientific understanding of Myalgic

Encephalomyelitis.  When will the government and the CFS/CFIDS charities also

act

responsibly and ethically to fund and promote genuine education, research and

treatment of this disabling epidemic disease?

 

John Anderson