Saturday, May 12, 2007

From my dear Friend Aria

I would like to suggest a very *SIMPLE* thing we can all do for Fibromyalgia Awareness Day this year, on May 12, 2007 (Saturday).
Below is a collection of articles. Simply forward this info to friends and family. Here's a list of the articles--
*1. "My Name is Fibromyalgia"* by Terri Been - a short, interesting and "classic" piece on fibromyalgia - most people will read it all the way through. I have added one sentence at the very end...YOU WILL SEE IT THERE.
*2. An article about the symptoms of CFIDS/M.E.* - very articulate and true.
*3. A poem sent in by a newsletter reader today* - many of us will relate to her struggles.
*4. Dominie's FMS/CFIDs Homepage - visit for more information.By sending all or some of these articles on or before May 12, each of us will be helping to increase FMS/CFIDS/M.E. awareness.
Pick your subject(s) - 1, 2, 3 and/or 4. Then cut and paste them into an email for friends and family, neighbors, newspapers, government officials, talk show hosts, etc. You may want to add a few of your own words like, "Just wanted you to know what I deal with everyday...." or something like that. * (I do not recommend sending this email to employers or co-workers unless you will be leaving your job soon, or if they already know about your situation and are very supportive. We have all had a "caschectomy" and don't need a "jobectomy" too!!) *In the subject line of your email, you might want to put something like: "In honor of Fibromyalgia Awareness Day," or "What I am dealing with." Please let me know if any of this brings about some positive or enlightened feedback.Dominie Soo Bush
*1. My Name is Fibromyalgia*by Terri Been Hi....My Name is Fibromyalgia, and I'm an Invisible Chronic Illness. Iam now velcroed to you for life. Others around you can't see me or hear me,but YOUR body feels me. I can attack you anywhere and anyhow I please.I can cause severe pain or, if I'm in a good mood, I can just cause you toache all over. Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now! I also took Good Sleep from you and, in its place, gave you Brain Fog. I canmake you tremble internally or make you feel cold or hot when everyone else feels normal. Oh, yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away, too. You didn't ask for me. I chose you for various reasons: That virus you had that you never recovered from, or that car accident,or maybe it was the years of abuse and trauma. Well, anyway, I'm here to stay!I hear you're going to see a doctor who can get rid of me. I'm rolling on the floor, laughing. Just try. You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL, not taken as seriously as you feel when you cry to the doctor how debilitating life is every day. Your family, friends and coworkers will all listen to you until theyjust get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of they will say things like "Oh, you are just having a bad day" or "Well, remember, you can't do the things you use to do 20 YEARS ago", not hearing that you said 20 DAYS ago. Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a "Normal" person, and can't remember what you were going to say next! In closing, (I was hoping that I kept this part a secret), but I guess you already found out...the ONLY place you will get any support and understanding in dealing with me is with Other People With Fibromyalgia....(or if you are fortunate enough to have an understanding spouse, friend or family member).*
**2. What is CFS (Chronic Fatigue Syndrome) or M.E. (Myalgic Encephalomyelitis, as it is called outside the U.S.)? **/Scroll down to read the words I have highlighted in RED--/**What is M.E.? The shorter 'cheat sheet' version** ****.*© Jodi Bassett, 2004 (updated January 2006)Myalgic Encephalomyelitis (ME/ICD-CFS*) is a debilitating acquired illness which has been recognised by the World Health Organisation (WHO) since 1969 as *an organic neurological disorder*. ME/ICD-CFS can occur in both epidemic and sporadic forms and appears to be remarkably similar to post-polio syndrome (an enteroviral triggered disorder). ME/ICD-CFS can be extremely severe and in some cases the illness is fatal. Is Myalgic Encephalomyelitis a new/modern psychological illness? No. The illness has been documented as an organic (physical) neurological disease for centuries. Myalgic Encephalomyelitis has nothing to do with fatigue? If you are tired all the time, you do not have M.E. *ME/ICD-CFS is a neurological illness of extraordinarily incapacitating dimensions that affects virtually every bodily system not a problem of chronic fatigue. *Well why is it also sometimes called Chronic Fatigue Syndrome then? This new name and case definition for the illness were created in the US by a board of 18 members, few of which had either looked at an epidemic of the illness or examined any patients with the illness. Why? Money. There was an enormous rise in the incidence of M.E. outbreaks in the late 1970?s and the 1980?s and so it was at this time that certain psychiatrists and others involved in the medical insurance industry (on both sides of the Atlantic) began their campaign to reclassify the severely incapacitating and discrete neurological disorder known since 1956 as M.E. as a psychological or ?personality? disorder in order to side-step the financial responsibility of so many new claims. As Professor Malcolm Hooper explains: A political decision was taken to rename M.E. as "chronic fatigue syndrome", the cardinal feature of which was to be chronic or on going "fatigue", a symptom so universal that any insurance claim based on "tiredness" could be expediently denied. The new case definition bore little relation to M.E.: objections were raised by experienced international clinicians and medical scientists, but all objections were ignored. Public, medical and governmental understanding and acceptance of the illness is huge mess, that is for certain but it is not an accidental mess, that is for certain too. *Note: A new term, ME/ICD-CFS, is used by some to differentiate between the many different definitions of CFS which have been created by such vested interest groups; to make it clear that it is ONLY neurological Myalgic Encephalomyelitis which is being discussed (as well as M.E. equivalent CFS as per the WHO?s International Classification of Diseases listing) and not any variation of fatiguing illnesses? which bear no relation to true neurological Myalgic Encephalomyelitis. What is Myalgic Encephalomyelitis? What is its symptomatology? M.E. is characterised primarily by *damage to the central nervous system (the brain) which results in dysfunctions and damage to many of the bodys vital systems and a loss of normal internal homeostasis.* Therefore, although Myalgic Encephalomyelitis is primarily neurological, symptoms may be manifested by: *cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. More than 64 distinct symptoms have been authentically documented in M.E. Symptoms are also caused by a loss of normal internal homeostasis; the body becomes unable to make all the appropriate physiological adjustments that allow it to maintain homeostatic equilibrium in response to the changes to the internal and external environment that are part of everyday life. The body/brain no longer responds appropriately to homeostatic pressures, including (to varying extents): physical activity, cognitive exertion, sensory input, orthostatic stress, emotional stress and infectious stress. Symptoms include: *Sore throat, chills, sweats, low body temperature, low grade fever, lymphadenopathy, muscle weakness (or paralysis), muscle pain, muscle twitches or spasms, hair loss, nausea, vomiting, vertigo, cardiac arrhythmia, orthostatic tachycardia, orthostatic fainting or faintness, photophobia and other visual and neurological disturbances, hyperacuity, alcohol intolerance, gastrointestinal and digestive disturbances, allergies and sensitivities to many previously well-tolerated foods, drug sensitivities, stroke-like episodes, nystagmus, difficulty swallowing,, myoclonus, temporal lobe and other types of seizures, an inability to maintain consciousness for more than short periods at a time breathing difficulties, emotional lability and sleep disorders. Cognitive dysfunction may be pronounced and may include; difficulty or an inability to speak (or understand speech), to read, write or to do basic mathematics; as well as problems with memory including; difficulty making new memories and recalling formed memories and difficulties with visual and verbal recall. *What does cause Myalgic Encephalomyelitis? Are there outbreaks? There is a history of recorded outbreaks going back to 1934, a review of early outbreaks found that clinical symptoms were consistent in over 60 recorded epidemics of M.E. spread all over the world. M.E. is an acutely acquired neurological illness (with systemic effects) initiated by a virus infection. This point of view is supported by history, incidence, symptoms, similarities with other viral illnesses and a large body of medical research. So what do we know about Myalgic Encephalomyelitis so far? There is an abundance of research which shows that M.E. is an organic illness which can have profound effects on many bodily systems. Many aspects of the pathophysiology of the disease have, indeed, been medically explained in volumes of research articles. Nearly 1000 good articles now support the basic premises of M.E. Whilst it is true that there is as yet no single laboratory test which can diagnose M.E., there are a specific series of tests which enable a suspected M.E. diagnosis to be easily confirmed (MRI and SPECT scans of the brain for example). Various abnormalities are also visible on physical exam.Some of the abnormalities found in ME/ICD-CFS patients include: *extremely low blood volume (up to an astounding 50%), enzyme pathway disruptions, punctate lesions in ME/ICD-CFS brains resembling those of Multiple Sclerosis patients, sub-optimal cardiac function and abnormal cardiovascular responses, persistent viral infection in the heart, severe mitochondrial defects and significantly reduced lung functioning. *Strong evidence also exists to show that *exercise can have extremely harmful effects on ME/ICD-CFS patients in many different bodily systems; permanent damage may be caused, as well as disease progression. This is why the exercise programs being recommended? or sometimes forced on M.E. patients (including young children) to treat their supposed chronic fatigue are so dangerous and harmful as to amount to legalised torture. Patient accounts of leaving exercise programs much more severely ill than when they began them (wheelchair-bound or bed-bound or needing intensive care) are common and the damage caused often seems to be severe and either long-term or permanent. Sudden deaths have also been reported in M.E. patients following exercise.How common is Myalgic Encephalomyelitis and who gets it ME/ICD-CFS is a worldwide epidemic of devastating proportions. It is around three times more common then Multiple Sclerosis, it is also more common than lung cancer, breast cancer, or HIV (in women) with an estimated *2 million sufferers in the US, 250,000 sufferers in the UK and many more worldwide. ME/ICD-CFS affects young children, teenagers and adults, all races and socio-economic groups, and has been diagnosed all over the world. Recovery from and severity of Myalgic Encephalomyelitis ME/ICD-CFS can be progressive, degenerative (change of tissue to a lower or less functioning form, as in heart failure), chronic, or relapsing and remitting. It can also be fatal. Patients who are given advice to rest in the early stages of the illness (and who avoid overexertion thereafter) have repeatedly been shown to have the most positive long-term prognosis. ME/ICD-CFS is a life-long disability where relapse is always possible. Symptoms are extremely severe for around 30% of sufferers (leaving many of them housebound and bedbound). As Dr. Paul Cheney explains: "The worst cases have both an MS-like and an AIDS-like clinical appearance. *We admit regularly to hospital with an inability to care for self. "M.E. specialist Dr Dan Peterson found that: ME/ICD-CFS patients experienced greater "functional severity" than the studied patients with heart disease, virtually all types of cancer, and all other chronic illnesses. An unrelated study compared the quality of life of people with various illnesses, including patients undergoing chemotherapy or haemodialysis, as well as those with HIV, liver transplants, coronary artery disease, and other ailments, and again found that M.E. patients scored the lowest. "In other words", said Dr Leonard Jason in an interview, "this disease, this syndrome, is actually more debilitating than just about any other medical problem in the world. "Truly ME/ICD-CFS can be *one of the most debilitating and horrific illness there is, yet many with ME/ICD-CFS are subject to repeated medical abuse and neglect and are also forced to deal with extremely severe illness without the support of friends, family or the wider community or medical or government services (and indeed often they suffer abuse at the hands of these as well) because of the way the illness has been dishonestly ?marketed? to the public as being psychological or behavioural, or as being a problem of mere ?fatigue.? *PLEASE help to spread the truth about Myalgic Encephalomyelitis. This appalling abuse and neglect of so many severely ill people on such an industrial scale is inhuman, and has already gone on for far too long. See for more information about all aspects of ME/ICD-CFS and for references.

This is a poem I wrote about how I'm feeling today, which isn't good...

I tremble.........
why can't I pour myself a glass of milk?
a simple task
but yet
it feels like I am moving mountains
after several attempts
and making a mess of things
I give up..........a simple task

I walk.........just a few steps to the bathroom exhaust
meI sit there for 20 minutes to
my body aches and is exhausted
just to walk these few steps
a simple task

I plan the day out
I am going to clean
invite a friend over for coffee
cook supper
who am I kidding....

such simple tasks

washing my hair and bathing is a full day for me
cleaning the bathroom never gets done
I have to stop in the middle
and recuperate
a simple task

Dear Lord
when will I see the sun again
the wind against my back
birds flying in formation

I could take a walk
but who would help me
when I am so weak I cant get up
how will I get back home?
a simple task

I think I will lie down and rest a bit
just the fantasies of being normal
wear me out
maybe tomorrow I can do just one
simple task

*4. Dominie's FMS/CFIDS/M.E. Hompage * m has many helpful and supportive articles for people suffering with *neuro-endocrine-immune disorders*. Dominie was diagnosed in 1982 and since 1996 has maintained a health website for other sufferers. She writes a free weekly newsletter of encouragement and information, which can be requested from her site or by writing to Dominie at Recent back issues of the newsletter can be found at You can also search the site for specific topics.

For those of you who don't know I suffer from this horrible disability, along with degenerative disk disease, and a few bulging disk, and a variety of other things. So when I get to quilt it is a great thing!

No comments: