For fellow patients in the ME world our energy is low so we must keep our spirits high. We must keep united in our search for progress, and we must stay united in our insistence that the public health agencies end the denial, recognize the epidemic of ME and search for the cause. In that vein I have selected this New Years message to help set the tone.
To keep our spirits moving forward we should embrace the promise of science and move forward in our battle as though we are entering a new year.
Yes, there is a new year ahead, Great things to come! New breakthroughs! New Treatments! More recoveries! New Specialist Centers! ? ? ?
Wait to be realist there may be an impediment to a glorious and prosperous New Year.
The name Chronic Fatigue Syndrome. The name itself has caused enormous suffering to thousands of patients, and perhaps millions worldwide. This suffering runs the gamut from ridicule and shame to deaths from negligent medical care. For the patient community this suffering is a pervasive enemy that we have to battle with everyday in addition to our disease, that for many of us causes complete disability.
This name causes confusion, all that hear the name cannot but presume it must be just a lot of tiredness. Nobody likes to hear about someone that is chronically tired.
Physicians are not much different, they have never studied the disease and must respond from their ignorance with little else than the ideas ignited by the name. They also rely on their extensive training that comforts them with the suggestion that if there are no striking abnormalities from routine examination then it is surely not an organic disease. And confidently blunder forward and do not take the patients symptoms seriously.
A protracted disregard for the patients
medical condition ensues.
Negligence and abuse often leading to permanent physical deterioration is very common. When patients challenge these practices most physicians will hold steadfast and close themselves within these beliefs comforted by the whispers of colleagues 'must be psychological'. Beliefs not based upon investigation and careful consideration of the evidence.
When in fact this is a neurologic disease with extensive systemic and metabolic abnormalities. (With much similarity to Poliomyelitis, Multiple Sclerosis, tropical spastic pareparesis, Lupus, Myasthenia Gravis, Parkinsons, Autism, mitochondrial myopathy, Sarcoidosis, . . )
A major and fundamental effect of this name is the public response or non acceptance of this disease as a serious public health matter. Consequently pubic agencies do not request or received adequate government support to pursue the basic understanding and treatments for this disease.
The principal question is where did this name come from. Dr BM Hyde in a 1998 paper discusses this question with clarity: from experience and the examination over many years of thousands of patients leading to the observation that the CFS construct is fictitious and what actually exists in nature is patients have the disease Myalgic Encephalomyelitis.
ME has had a long association with
Poliomyelitis. It should also be taken into account that when ME and Polio were
described as being similar it was done at a time when Drs were often very
experienced with polio cases and knew its features.
In 1938 the U.S. Asst. Surgeon General, Dr A Gilliam published a major report about this Polio-like illness detailing the epidemic of 1934 at
would be difficult for Drs today to acknowledge the
similarities to polio, a disease they have never had any experience with.
The question remains today. Is ME a different expression of polio?
Were there other viruses that were present along with the wave of the polio epidemics?
Did polio and its companions mutate after the polio vaccine?
Is ME an uncommon result of a common virus?
Paralysis from polio occurred in about 1 percent of those that contracted the polio virus. At the time that polio epidemics were studied many of the herpes viruses had not been discovered, were they there then contributing to these plagues. Do certain herpes viruses have a special relationship with the polio viruses in the same way HIV and HHV6 work together.
We may never know if the government continues to cover up the existence of ME by calling it fatigue and confusing the public and doctors and fostering mythical subgroups. Confusing the understanding of this disease by opening the door for the inclusion of a multitude of unexplained fatigue conditions and somatic syndromes that will choke off the support and investigation of Myalgic Encephalomyelitis.
Why should ME receive any priority over the many syndromes that might have Neurological or Immunological or Endocrine aspects, that are all Related by being under the same umbrella ?
If the government is interested in covering up the seriousness of this disease then the term CFS has worked wonders.! And they apparently have no desire to eliminate it. Though they have been asked repeatedly. And now when purportedly convened to do just that they come up with a plan that continues the use of CFS and designs a New and Better plan to make it all more confusing in order to retain the name CFS.
One might say that
you can get a good gauge of the governments interest
by how much they spend on it. Just recently with the flick of a pen they spent
500,000,000. public dollars on some vaccine just to be
prepared. Not a single patient, but just to be prepared. I do not advocate that
we should sell our blood to bin Laden anymore than I would tell anybody to
support the NCW proposal.
These would be equally as disastrous. And treasonous.
As we come to a new
year we can see there is much work to be done.
The most important will be to overturn the cover-up of Myalgic Encephalomyelitis so that we can demand a responsible level of funding from our government to find the cause and cure for our disease.
So I look forward
to a new year full of struggle toward progress.
We must unite our efforts to Restore the Name and with it focus on understanding Ramsay's descriptions and how very accurate they still are today.
So I join with the spirit of the Medical Professionals with ME in their Declaration, WE ARE PREPARED TO BE PERSISTENT.
So, remember your vigor before M.E. as you remember the days of Auld lang syne,
Happy New Year!
Need additional info? Or share your ideas or questions at firstname.lastname@example.org
SEE THESE PAGES
Click on these Links
ME the true history, a Very Important Paper Could CFS be a Fiction, learn about ME
A long time ME expert talks about the ME disease, including his experience with the 1975 Sacramento Outbreak
Medical Reports on the Neurology of ME
Medical Reports on the abnormal Metabolism in ME
Medical Reports on the Muscles in ME Ramsay was right
An example of the problems with
Vaccines - the science and the official delays
A scientific discussion of the complexities and dangers of New Unusual Infections
Evidence of Herpes Virus in Myalgic Encephalomyelitis
Gulf war - Myalgic Encephalomyelitis and Autism : interrelated causes
What is Encephalomyelitis important considerations
For your safety M.E. patients must consult an experienced M.E. health care professional. M.E. is a complex multi systemic illness and patients should seek a recognized expert or a doctor that has fully studied the history and scientific evidence about myalgic encephalomyelitis. All the materials presented here are solely for educational and non-commercial purposes.
Myalgic Encephalomyelitis Home Page http://www.oocities.com/sezar99q
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