Here are a few more things to think about if your pursuit of a formal diagnosis of M.E. is just not forthcoming and you are getting to the point of extreme frustration that many of us have found ourselves in. 

You KNOW you are not well, so check out these along your journey. Blindly insisting you have M.E. or it’s poor relation, ”CFS” (without all the brain scans etc. being done) can be hiding an underlying cause of something considered by the masses as truly “tangible” or medically more recognised that is properly treatable and there is no shame in it not being M.E. when the symptoms seem to match so perfectly… 

It can take many years, many dollars, many tests and a truck load of different Doctors to finally get a definitive result, so please make sure none of these nasties are lurking under the surface & throwing you off track. Get tested to rule out everything else as soon as you can. Your life can’t just be on hold forever…

1) Parathyroid disease strikes an uncanny resemblance to the symptoms of ME/CFS, so please talk to your health care professional about getting tested if they haven’t already thought of this first! It doesn’t hurt to give them a nudge - this is YOUR health we are talking about!

http://parathyroid.com/parathyroid-symptoms.htm

2) Make sure you get your blood calcium checked & a bone density test ~ don’t end up with early onset Osteoporosis/Arthritis like me… it really is very crippling and you don’t need the additional stress on top of your M.E. sufferance. This goes for men as well as women and it doesn’t matter how old you are! I was only 18 when I was told this was on my menu and dx’d in my mid 30’s.  This disease makes you old, fragile & tired way before your time and the fractures hurt like hell. Simple hugs have fractured me badly, so this is not a cuddle friendly disease! Do your best to avoid it now.

 http://www.osteoporosis.org.au/osteo_osteoporosis.php

3) Also, you’d be surprised just how many people have glucose problems and don’t even know it.  Ask your GP to perform a Fasting Glucose Tolerance Test for either a 2 or 4 hour trial as well as monitoring insulin to rule out Diabetes or insulin resistance ~ many of the symptoms are found in MEites too as it mucks up your endocrine system, but if you catch this in time and it’s Type II, there is so much that can be done to relieve your suffering before you need drugs such as Diabex XR (Metformin slow release) to assist you… 

You can get your own blood glucose monitor pretty inexpensively if not completely free from various manufacturers as they know you will test a few times a day & their huge profits are on the test strips. You will have to buy the testing strips which are expensive (unless you get dx’d as diabetic or insulin resistant, then they are often on a basic prescription charge for a few pounds or dollars). 

Home glucose monitoring is the way to go - even if you are not diabetic you should keep your blood sugar range around 4.6 - 5.0 mmol/L so your pancreas doesn’t lose the plot! Just test a few times a week, 2 hours after you start eating your meal to get a basic window into your glucose health.  Insulin is also a stress hormone and is responsible for an awful lot in the endocrine system…do you know what yours is up to right now?

Diabetes & glucose is not all about going blind and having your legs amputated! There are quite a few differing types of the disease around and it is becoming an epidemic, a bit like M.E.  You are probably  human - learn about your body & how it all works…knowledge is power after all.

See www.bloodsugar101.com by Jenny Ruhl or buy her book of the same name, this is fascinating stuff and makes perfect sense for everyone to adhere to, not just sugary people…

Be aware that high insulin levels ravage the body and chronic fatigue is a classic symptom, along with depression - not many GP’s will test your insulin serum and cortisol as well as glucose without you instigating it - it is often overlooked by lackadaisical medics (mine was ignored for over 25 years and yes, I am now a Diabetic due to being unaware & late intervention) so don’t let it happen to you! 

Also, if you have high cholesterol and a fatty liver not caused by excessive alcohol consumption (NAFLD - non-alcoholic fatty liver disease) - insist on a glucose & insulin test because this could be the culprit.

http://diabetes.about.com/od/symptomsdiagnosis/p/Symptoms.htm

I hope you find these links helpful…

Namaste.

If you click on this M.E. banner created by artist and fellow MEite, Rachel Groves, you can, thanks to Rachel and everyone linking up, meet other MEites from all over the world who have joined in the “Blog for ME” event that has been advertised on this site for the past month…

Here is my humble offering:

G’Day from an MEitess down under…

I hear you’re having a bit of a heat wave in the Northern Hemisphere at the moment (that’ll make a change and it’s only mid May, flaming June, Wimbledon and Strawberries is up next!) - we are into our Autumn here in sunny “beautiful one day, perfect the next” Queensland and already it’s cooling down rapidly…time to put one less ice-cube in the Chardonnay now & beg someone to chop some firewood (for effect only really) in readiness for deepest Winter = Christmas in July (oh, how thrilling)!

Seriously though, Australia, being such a vast continent, has its absolute extremes in everything, from the weather and the size of the mosquitoes, to the Sport (yawn) and even the way in which M.E. is accepted…or not. The latter, unfortunately, still being the firm favourite of course, but we are getting there slowly…more & more people are realising their mysterious & chronic symptoms match those of M.E. (Myalgic Encephalomyelitis) rather too closely - not “CFS”, these folk are way beyond fatigue, when all else (assuming some form of modern testing is actually even available) is eventually ruled out…we can’t all be bludgers dreaming of a fabulous life, sly on the sicko can we?  “Ooh, I’ll bung another fifty bucks in the pokies (pub slot machines), grab us another rum n’ coke will ya Noelene, it’ll cure me CFS, there’s a dahl…”.

The ingenuity (does another Rachel need to take a bow as well?) behind campaigns such as this international blogfest, is not only helping to raise awareness about M.E. today, all over the planet, but through the wonder of the Internet, we can actually truly unite and make many new friends from far & wide, swap stories, educate the public, our families, ourselves and the medical profession (snigger pinch of salt needed there), compare potential scams treatments and offer our support to each other - the historically acclaimed Nurse & reputed to be MEitess herself, Florence Nightingale (12 May 1820 – 13 August 1910), who came to be known as “The Lady with the lamp” not “The Lady with M.E.” as would be the case nowadays, would approve greatly I’m sure - it’s a worthwhile way to continue to celebrate her birth date as well as the wonderful healing she brought forth into this suffering world…Some of us could do with your unselfishly loving help here now, Flo’!

Anyone suffering with M.E. will tell you it’s an ongoing battle for decent public and medical recognition of this complex neurological illness… and that it’s still a stigma on top of having to put up with “it”. This does have a fairly negative effect upon one’s coping mechanism, sending frustration levels soaring through the roof of the Sydney Opera House sometimes…  

Personally, I’m about 23 years into my karma experience of M.E. and for me, things are not improving. I spend my days living alone, with too many cats (probably smelling of wee) and a dog for company,  mainly house or bed bound, compiling info on this site and mucking about on others - like Facebook’s Foggy Faces or Fragile Friends (Yes, I know I’m not 13, sad for a 40 something isn’t it?  - see what M.E. does to a former good woman?). Keeps me off the turps though!

It’s only fairly recently that I even fully acknowledged the first diagnosis of M.E. I was given way back in the ’80’s - when “Yuppie Flu” was all the rage/fashion/epidemic… I foolishly bought into the idea that, yes, it was all in my head and I must press on with life, regardless of what the body was screaming…oh, those foolish years, and now, I’m copping the payback. Even the second dx did not really compute, I was far too busy to be that damn sick wasn’t I? …I am a natural blond after all…OK, a little bit mousy in winter, but we don’t have much of ”winter” here in paradise, so you can see the odds are against me.

Thanks to the www. I have been able to misinform myself very nicely, “It was that bout of EBV that did it!”, “No! It was that 747 dumping fuel on me that did it!”, I have suspiciously examined myself for alien M.E. implants and even wondered if “it” could be from an air born STD! Yep, it’s been a trip around the billabong alright, a few times! Finally, I have some answers and after copious months of researching (err, reading until near blind that is) brilliant articles & reports (posted on this site too), I think I have a small handle on what’s going on with my type 7 M.E. 

Type 7 M.E. sounds like a well nippy sports car doesn’t it?  “Tell me, Zarii, what car does a gorgeously hot young (’ish) lady like yourself drive then? A Porsche perhaps, an E Type?” “Nah, mate. Actually I drive a Type 7 ME - they are just soooo alert!”…snorts some coke to keep awake…and gimps off to her clapped out Volvo with no Turbo anymore…See’s car as reflection of Self…

Talking of Type 7’s, check this out for genetically found basic M.E. levels:

http://news.bbc.co.uk/2/hi/health/7378440.stm

The worst thing to come out of being chronically ill for so many years, just soldiering on with no one giving a toss care or support network, was losing (how careless) my long term, long haired husband to an opportunistic slutty healthier specimen, my beautiful marital home, the majority of my other pets and my “life” as a very busy professional running my own Funeral & Mortuary businesses, which became almost as embalmed as I felt.  M.E. & long term ill health has taken everything from me, including my chance to have a family of my own, many friends & family, who just don’t believe in “it” or plain kindness… but, on the bright side - it never really took me, even though there were many times I thought I was lost forever in the dark, downwardly immobile abyss of M.E.  I’m still here somehow and growing stronger in Spirit by the day…

But rather than give those tedious demons another really good flogging, ”it” has also given me so much. Out of suffering comes it’s opposite - appreciation and gratitude for little things, like not having a particular annoying symptom today, or the abating of intense pain. Having eyes to look with. Functioning nostrils…that sort of thing.  

Lately, I have a better sense of purpose, new growth, a way to use my “sick me time” - and that’s mainly in advocacy/support for M.E. and my other cause Osteoporosis (as I’m almost crippled by that and arthritis), so pretty muchly, near compulsive blogging, despite the ridiculous intermittent fogginess of M.E. f*ckwittedness  dementia and M.E. dyslexia challenges…not forgetting to mention the tremours, the sweats, the muscle weakness, the mumbling gibberish, the paralysis, the TIA episodes, the nausea, the seizures, the constant migraines, the M.E. blues, the IBS, the adrenalin trips, the weeks months of insomnia, shall I go on…? Hell, I almost forgot the eternal waves of death-like exhaustion there! You know. You “get” it, even if the majority of my past GP’s think an aspirin and a sprint around the block will fix everything I’m “imagining”!  

I have also met other MEites for the first time (including in person, Rachel M - which was a recent highlight as we compared wheelchair stunt skills - neither of us have any!) and just in knowing them, learning them, that there exists some Soul out there in Cyberspace, or maybe just around the corner, who knows exactly what it’s like and the pleasure in sharing stories, hopes, dreams, tears, so much more - life with M.E. feels better…it’s called acceptance, we are the tiny tea lights flickering between life & death at the end of the tunnel. Together, I hope we will illuminate the world and flood M.E. out of the darkness of ignorance and denial so future sufferers do not ever have to question themselves or their very sanity the way many of us have been forced to by a f*cked up system.

Firm friendships are forged out of this desperate & devastating illness, and that is a simple, good happening. It’s an amazing and wonderful thing, because it is living, vibrant energy, generated purely from us near flat batteries, but we are alive with hope and bestowed with big hearts - a true blessing, and that blessing instills a little faith back into humanity through the right minded action of compassion.  Namaste my friends.

Thank you for reading me for M.E.!

Brightest Blessings to you.

Zarynity (Zarii) Bow-Dern.

<a href=”http://rachelcreative.wordpress.com/2008/04/18/blogging-for-me-cfs-2008blogging-for-me-cfs-2008/”>Blogging for ME/CFS Awareness 2008</a>

See this link to the BBC article for more details - a reason to celebrate - it’s official.

http://news.bbc.co.uk/2/hi/health/7378440.stm

Here is a link to Thyroid issues - some of these listed symptoms sound a lot like the ones we encounter in M.E. - it might be worth talking to your GP about this… Thanks to Rachel (and her GP) for making me aware of this possibility! Z

http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Thyroid_issues_the_parathyroid_glands?OpenDocument

Please blog to your heart’s content on the 12th May 2008 and help raise awareness about this illness - blog everywhere!

Here is a link to more about it:

<a href=“http://rachelcreative.wordpress.com/2008/04/18/blogging-for-me-cfs-2008blogging-for-me-cfs-2008/”>Blogging for ME/CFS Awareness 2008</a> 

HAPPY BLOGGING!

COMING TO TERMS WITH M.E.

Eventually, after a darn long haul, you’ll find yourself all M.E.’d out. You will arrive at a point where you couldn’t give a flying CFS what happens anymore. You’re worthy of a super-sized double whopping Ology and are far more of an expert in the M.E. minefield than most GP’s could ever hope to be.  You’ve read the books, spent all your money on the recommended miracle-berry juices, supplementary supplements, boot-leather flavoured root powders and latest breakthrough  wonder “treatments”.  Your parasites have even wormed their worms, you have no biotics left to anti and you’ve used your insomnia up ever so wisely surfing the Internet in the witching hours, until there is not a conspiracy theory that dares hide from your newly diagnosed paranoia about being paranoid.  You’ve signed every e-protest you could find to protest about, blogged your health woe questions on the friendliest of CFS forums, joined local support groups a plenty, got the right M.E. tee-shirts with free matching lapel pins and chanted to some psychedelic demigod from Lemuria in pigeon Swahili backwards. And…you still have M. flippin’ E.

You’ve been suffering and barely existing with the illness for a lengthy time; perhaps your friends are long gone, you’ve given up on the cold tea and crocodile sympathy (if ever there was any) and maybe even your spouse, children & family have turned their backs too.  M.E., as you will know by now, has a knack of doing this.  It can be a long, lonely road to be forced to take and one which is travelled alone whether you like it or not…not even a complimentary sip of Gatorade to help you on your way…yes, M.E. totally sucks.

When all is said and done, and there is not one more bright idea left for you to try, you and IT are stuck together like incompatible conjoined twins.  You are the epitome of advocacy and activism - you deserve an ice-cream, a Nobel Prize, a Sainthood, anything in fact for recognition of what you and others like you have been and are going through.  Unfortunately, it’s time to get real.  Unless there is personal or financial gain in it, no one really gives a toss for more than 30 seconds - they just sort of glaze over…I’m sure you know exactly what I mean!

When you start to accept your M.E. is probably here to stay and you are not on the cosmic A-list for a decent remission, let alone a total reprieve, you can help yourself come to terms with your situation by knowing thyself, including IT.  This means honouring you - gearing your life around your particular limitations, no matter what anyone thinks. It is an illness that makes you do what you gotta do - not a great deal of anything mind-blowingly constructive really…very hard for healthy people to “get”. 

By now, you are used to the lazy labels, the frustrations and disappointments your illness causes.  You are finally immune and you can tell, because all that stops hurting so badly - it’s like water off a duck’s back these days. You know you’re not selfish or depressed or being precious - it is the nature of the illness which is these things.  It is demanding centre stage and you are its understudy - try explaining that to a non M.E.ite!  Forget it, save your energy right now.

Despite the dreadful loneliness, near total isolation for many and the worry over doing the simplest of chores, or feeding ourselves, we have to face the music - we have a choice to make.  We can keep on wallowing in the misery of M.E., keep on researching and chasing the cure, keep on living it every second in every way, which gets us nowhere, or we can start to make the best of a bad lot.  With careful management of the mental fatigue, we can develop our spiritual sides to counteract somewhat for what the body is lacking. Meditation is not really very hard and learning to relax those weary muscles is a big help. Retraining our minds to stop worrying about being ill is a very personal and major step forward.

I’m not suggesting we can CBT (Cognitive Behavioral Therapy) ourselves into perfect wellness, or read a best selling New Age Guru book and magically invoke it to happen, but we can stop fretting over our lack of progress a little and try to live outside of the illness a bit better.  We need to be kinder to ourselves! I for one, am very tired of my M.E. dictating and stuffing up everything I want to do!  I am ready to say enough is enough - you’ve had me in your clutches for twenty odd years and now I am escaping to a place you can’t touch me! So there! Kapppowww! Take that, you rotten life thief!  Hmm, that feels goood…

If you are well enough to sit in the garden with the elements on your face for ten minutes or have somebody take you into nature, like the beach or the country - do it while you can! Stuff the housework/paperwork or whatever irks you for today - make time to nurture you! Your Soul will appreciate the attention. Breath in the air, be unselfishly loving to you first and it will radiate out giving you a sense of inner well-being, possibly for the first time in years.

Once it is accepted that your M.E. is not going to miraculously vanish overnight, you can start to nurture the only part of you that is unscathed, the part of you so often left in the background and the part we only really start to think about when we are really, really ill and feeling as if the Grim Reaper is about to strike.  We sometimes need to remind ourselves that M.E., whilst running rampant in the chaos of our stricken bodies, can never touch our true selves - our Souls…we are safe!

We have the gift of imagination and usually the “resting” time in which to develop it, far more than busy, bustling Matrix embroiled persons.  Because of M.E. we can afford the pottering time and luxury time - as some would see it (or vital resting compensation as we see it) of indulging our minds (when not overcome by brain/idiot fog), in books and films and meditations and dreams…we can allow our Souls to grow and create. 

The wisest advice I have been given, (a few times actually, as I’m pretty dense) by fellow Islander, M.E.ite & friend Deb, is to allow my focus to stop miserably dwelling on what/who I am missing, losing out on or what has been stolen by M.E. over the years, or traumatic life events and start growing some new positive neurons, as in seeing that joy is really not too far away - all around me in fact. 

Even if I’m not up to going out that much any more due to a current relapse, or am no longer able to travel the world, or try to bungee jump, or dance or gallop on horseback in the surf, it doesn’t stop me visualising these experiences and having simple fun or finding peace and wonder in the things to hand.  I think the upside of this illness is having the privilege of quiet time to be learning to work within its boundaries and make the best of it on a daily basis according to stamina and ability. It costs nothing and takes little effort to connect to Soul by watching a butterfly or observing the moon in the sky.  Of course, overextending one’s energy credit is foolish and as any long term M.E.ite will tell you - comes with huge and often debilitating payback debits, so the trick is balance, beautiful balance at all times…

Taking time to learn to appreciate the view outside the window, or the way the light plays on the walls is taking time to notice the little things that make up the experience of being on this earth.  Not many people make the time for this in their daily, stressed-out tear around. Blessed are those of us who do have the time through being sick, even if it’s not what or the way we would choose. 

Until there is a real cure for this neurological illness, our position is precarious - with an increasing number of early deaths being attributed to it and the serious malfunctions it sadly causes.  Many of us have an inkling our days are indeed numbered…so surely it makes some sense to prepare and develop the imagination and the Soul.  It is not about religion, it’s about Spirit, yours and mine.  You know there is more to you than a bag of aching bones…it’s called your Soul… A good starting point is asking yourself how aware are you of this sense of more-ness?

For me and my M.E., it is time to pay more attention to the little things in life and I would like to think that when my time comes, my Soul will have benefited in some way from being stuck amidst the chaos of this unpredictable M.E. riddled & health challenged body. I want my Soul to be at peace, to fly free, to dance and be filled with the joy I haven’t managed to find here thus far - and I intend to look harder, to work on it.  I want to be stronger in Spirit than the old body has been here for the majority of its years… I want to transcend from human being to Soul being with minimal fuss and a sense of direction and purpose for the experiences I choose to believe await me…

See you all on cloud nine then - I hear the views are spectacular…

Blessed Be.

A link for basic Meditation techniques from around the world:

http://www.feedback.nildram.co.uk/richardebbs/meditation/meditationindex.htm

Here are a couple of links to some popular enlightening, (non religious) life teachings:

http://www.abraham-hicks.com/

And, like the man says, “The world can only change from within.” :

http://www.eckharttolle.com/

© Zarynity 2008

R.E.S.C.I.N.D.
RESTORE M.E.
Parallels with poliomyelitis, transverse myelitis and related disorders
by Judith Silverman

Why the name Myalgic Encephalomyelitis should be Restored:

The name Myalgic Encephalomyelitis is the most historically researched, documented and descriptive name for the debilitating disease that is now currently known as Chronic Fatigue Syndrome.

The dictionary definition of the name Myalgic Encephalomyelitis means pain in the muscles (myalgic) and inflammation of the brain and spinal cord (encephalomyelitis). The controversy seems to be about the inflammation in the brain and spinal cord. Supposedly there is no evidence that this inflammation exists. I disagree!

Some of the manifestations of CFS/ME such as orthostatic hypotension demonstrate that an inflammatory process has already taken place. Orthostatic Hypotension has both neurogenic and non neurogenic causes. I am going to present some of the parallels of symptoms of people with CFS with those of “accepted” neurologically based diseases such as poliomyelitis, Guillian Barre, Transverse Myelitis and MS.

Myalgic Encephalomyelitis shares a common history with the poliomyelitis virus. Research done by Dr. Sabin in 1947 demonstrated that a “mild” type of poliomyelitis “Summer Grippe” did not have to paralyze in order to damage the brain and spinal cord. Something to remember is that you have to lose over 50% of your motor neurons before you become paralyzed. Most of us were not paralyzed.

The following is a list of reasons why the name Myalgic Encephalomyelitis must be restored in order for relevant past research to be considered, and point current research in the correct direction in order to result in helpful treatment protocols and a cure for ME/CFS.
Historical significance of epidemics of M.E. and poliomyelitis.

Proof that nonparalytic polio causes neurological damage which later may be expressed as post polio syndrome or CFS/ME.

Polio-like paralysis still occurring today—-Transverse Myelitis (Acute Encephalomyelitis) and Guillian Barre Syndrome (a disorder of the peripheral nerves similar to postinfectious encephalomyelitis).

Both TM and GB share as causation factors: (a) adverse reactions to vaccinations and (b) infectious viral and bacterial trigger agents also common to CFS/ME patients.

MRI (lesion) evidence and similarities in MS, TM, GB and CFS/ME. Transverse Myelitis (TM), Guillian Barre (GB), and MS are accepted neurogenic, causes of Orthostatic Hypotension.
TO EXPAND ON THE LIST ABOVE OF ITEMS 1 THROUGH 5:

Historical Significance of Poliomyelitis and Myalgic Encephalomyelitis; and proof that nonparalytic polio causes neurological damage which later may be expressed as post polio syndrome or CFS/ME: (#1 and #2 above)

There has already been excellent research done on this subject by Dr. Richard Bruno, a post polio researcher at Englewood Hospital and Medical Center in New Jersey which concluded that “Potentially half of those diagnosed today with CFS may in fact have had Summer Grippe or undiagnosed non-paralytic polio as children in the years before the polio vaccine became available. . . . http://www.englewoodhospital.com/ASP/fullstory-arch.asp?storyid=17

Please read Doctor Bruno’s recent article concerning Parkinson’s Disease and “Polio survivors with severe daily fatigue had significant word-finding difficulty.”
http://www.englewoodhospital.com/ASP/fullstory.asp?storyid=49

for Dr. Bruno and Dr. Sabin (Summer Grippe) and the treatment of PPS go to http://members.aol.com/harvestctr/pps/lib2.html

In Dr. Bruno’s Parallels between PPS and CFS he documents the parallel histories of poliomyelitis and M.E. “Beginning in Los Angeles in 1934 and continuing for more than twenty years, there were over a dozen outbreaks of a disease that was at first diagnosed as poliomyelitis, then as “abortive” or “atypical” poliomyelitis and finally named “Myalgic Encephalomyelitis.”

. . . . Unlike poliomyelitis, there were frequent complaints of numbness or parasthesias, usually no respiratory involvement, infrequent paralysis or muscle atrophy and almost invariable no fatalities.” Dr. Bruno also reports on the experiments that Dr. Sabin did with specimens from the “Summer Grippe” children that showed that spinal cord and brain stem neurons were killed by the “mild” nonparalytic poliovirus. Dr. Bruno said, “Sabin showed us that even a “mild” poliovirus infection could cause neuron damage that, although not apparent in terms of causing polio-like symptoms, was very real.”

The history of our illness (ME) goes back long before the outbreak at Incline Village in the 1980’s.

———————-
Polio-Like Paralysis still occurring today: (#3)

But what about people who were not even born until after the advent of the polio vaccines who now have ME/CFS. There are still other infectious agents that are attacking peoples neurological systems and paralyzing some, and leaving others with damage that could present as numbness of the extremities and/or damage to the autonomic nervous system—-such as orthostatic hypotension (NMH).

The names of two of these illnesses are: Transverse Myelitis (Acute Encephalomyelitis) and Guillian Barre. Please note that the CDC also recognizes the similarity of both Transverse Myelitis and Guillian Barre to poliomyelitis. I have quoted just a few sentences below, but you can read their entire monthly report, if you wish, at the following site. (The report is about the oral polio vaccines in China and is updated to 2000.)

http://www.cdc.gov/mmwr/preview/mmwrhtml/00044717.htm
“Since 1994, no cases of indigenous wild poliovirus infection have been detected in China despite substantial improvements in surveillance. In addition, the number of reported polio cases decreased 99% during 1990-1995. The remaining cases since 1994 were reported as polio based on clinical criteria (none were laboratory confirmed) and may represent misclassification of other causes of polio-like illnesses (e.g., Guillian-Barre syndrome or transverse myelitis) and vaccine-associated polio.”

(side note) My doctor is now treating a number of patients who recovered from either Transverse Myelitis or Guillian Barre Syndrome, and now have been diagnosed as having Chronic Fatigue Syndrome. I am one of those patients. Is CFS/ME really PPS? I believe the symptoms are similar if not identical.

———————-
Both TM and GB share as causation factors: (a) adverse reactions to vaccinations and (b) infectious viral and bacterial trigger agents also common to CFS/ME patients: (#4)

Since I was initially misdiagnosed as having Guillian Barre Syndrome, I have been receiving their newsletter for years and have noticed the similarity in symptoms and viruses/bacterias that were being researched as potential causes. I will not go into more detail but suggest you go to the Guillian Barre website and read their latest Medical Issue: articles such as the “Residual Effects following Guillian Barre” and the one that talks about the Campylobacter jejuni Infection and all the other suspected bacterial and viral connections. http://www.webmast.com/gbs (Click on Medical Issue Online)

You should then go to the Tranverse Myelitis site at http://www.myelitis.org and read the article written by Dr. Joanne Lynn concerning Transverse Myelitis: Symptoms, Causes and Diagnosis. Dr. Lynn’s article will familiarize you with some of the Viral and Bacterial infections that seem to present at the same time as the acute paralysis. You will recognize them: herpes, Epstein-Barr, enteroviruses (poliomyelitis, Coxsackie virus, echovirus), mycoplasma, lyme, influenza, HIV etc.

. . .Vaccination is well known to carry a risk of the development of acute disseminated encephalomyelitis (ADEM) which is an acute inflammation of the brain and spinal cord.

The Newsletters are interesting in that it demonstrates that similar research (stem cell) that is taking place at Johns Hopkins is also taking place at Salk Institute here in San Diego. This research will hopefully benefit: parkinsons, ALS, TM, PPS. Will it also benefit CFS/ME patients? http://www.myelitis.org/newsletters/newsletter3-2-04.htm

Johns Hopkins currently has a dedicated researcher named Doctor Douglas Kerr who is studying Transverse Myelitis and is in charge of the Transverse Myelopathy Center at Johns Hopkins: http://www.med.jhu.edu/jhtmc/

I am currently corresponding with a person who developed TM after mono. But remember one does not have to be paralyzed in order to have sustained neurological injuries. For those of us whose trigger illness was Mononucleosis, please be aware that some of the complications of mono are encephalitis, seizures, brain inflammation, nerve abnormalities, etc. (Merck Manual pages 919-920) Some mono sufferers need to take steroids to curb the swelling in the airway passages. Our lymph nodes and areas around the eyes also swell. Who says that spinal cords and brains do not. Many of us could not even get out of bed for months.

————————–
MRI (lesion) evidence and similarities in MS, TM, GB and CFS/ME. Transverse Myelitis (TM), Guillian Barre (GB), and MS are accepted neurogenic, causes of Orthostatic Hypotension. (#5)

I developed orthostatic hypotension after being ill from mononucleosis. Unfortunately this was not diagnosed until four years later. In the meantime, because of my symptoms of cognitive dysfunction, lack of balance and unusual gait and a history of transverse myelitis, my physicians referred me for an EEG and then MRI because they thought I had MS. Though I had seizure activity on the EEG, there were no white spots (lesions) on the MRI so I don’t have MS.

So why are (lesions) white spots on a brain MRI of a CFS/ME patient usually ignored and yet when they appear on a brain MRI of someone who has had transverse myelitis, the patient is diagnosed with MS? Isn’t it true that CFS patients symptoms so closely resemble those of MS patients that unless the patient carries the prior “label” of CFS in their file, that CFS patients can and are being diagnosed as having MS if they have the white spots (lesions) on the MRI.

Not long ago, I read a very fine article on Co-Cure by a prestigious physician from Harvard concerning some of the ways to differentiate a CFS patient from a MS patients (this is assuming they both have those spots on the MRI). CFS patients have a history of orthostatic hypotension and people with MS probably have a prior history of TM or foot drop. (I think I am the missing link since I have all three.)

I believe that Orthostatic Hypotension is the key to proving that there is an inflammation process that is taking place in CFS and that the name of Myalgic Encephalomyelitis is totally appropriate.

You can read all about Orthostatic Hypotension (except in CFS/ME, since for some reason CFS is not mentioned in this article) in “Evaluation and Treatment of Orthostatic Hypotension” which appeared in the American Family Physician at http://www.aafp.org/afp/971001ap/engstrm.html

A few sentences from this article are: “Sudden-onset dysautonomia or dysautonomia evolving over weeks may occur alone or in conjunction with orthostatic hypotension accompanied by mild sensory or motor findings. Some of these patients have Guillain-Barre syndrome with autonomic dysfunction as the predominant clinical abnormality.

Secondary failure of the autonomic nervous system (due to a systemic disease resulting in lesions of the central or peripheral nervous system) is a more common cause of neurogenic orthostatic hypotension. The lesions can occur in the brain, brainstem, spinal cord or peripheral nervous system. “

Please note in this article that Neurogenic Causes of Orthostatic Hypotension include: MS, TM and GB. These three illnesses along with poliomyelitis all share some similarities to CFS/ME. ((TM and GB both are linked with encephalomyelitis processes. (See the TM and GB websites and Merck Manual page 321 - Home Edition)).

(Just as a side note, Dr. Rowe currently has a research project going on at the Johns Hopkins with Gulf War Vets that are experiencing Orthostatic Hypotension.)

CONCLUSION:
The bottom line to this very long post is that CFS/ME patients have developed many of the same symptoms and lesions on their MRIs that people who have had a documented paralyzing neurological insult such as Polio, MS, TM and GB.

There is plenty of evidence that points to inflammation and therefore the name Myalgic Encephalomyelitis is totally appropriate.

The restoration of this name (M.E.) will restore and retain the historical significance of the connection between M.E. and poliomyelitis and all other polio-like illnesses.

To change the name CFS to anything else will only aid in obscuring valuable clinical information gained over the past 50 years concerning the pathology of the illness and possible future beneficial treatment protocols for M.E. patients.

Judith Silverman

Permission to Repost Entire Article.

Behind M.E. Cellar Door…

 © Zarynity 2008

The Vintners & Brewers of the world oughta be worried, very worried. As billions of people find themselves falling victim to the neurological nightmare illness of M.E., around 95% of them will find, for some befuddling reason, they just can’t handle alcohol anymore.  Not even the wee’est of drams. It goes with the territory of course and it’s peculiar reaction with your M.E. riddled, half-dead body.

It seems to be, that if you decide (against your newly found intuition) to ingest a swig of that favourite sun-downer tipple, if you still even fancy one that is, that you will not only subject yourself to mega fast accelerated side effects of becoming totally paralytic on maybe a couple of sips (or even the vapour), but that you will undoubtedly find yourself in bed for a week or six recovering from the worst hangover and exacerbated M.E. symptoms you could imagine. You are experiencing toxic shock on an already toxically shocked body…

With taxes on alcohol being pretty high, you’d think the superpowers woulda thunk of the economic loss before they poisoned us all with their bio-weapon of mass destruction - M.E. (defused and accepted as the term “CFS” in mind controlled Countries so they can smugly tell you you’re imagining it all anyway. Hell, now you really need a drink).

Never mind, put away the corkscrew & icepick, there’s always your best friends to fall back on - M.E.-ade and warm, malty comfort beverages….just like Grandma used to enjoy.

Bugger. I loved my Bollinger…

For more:

http://www.newomen.com/displayarticle208.html

Oh, and also (be aware):

http://www.anapsid.org/cnd/activism/brucellosis-scott.html

Here is a copy of an unedited group email by Jodi Bassett from A Hummingbirds Guide to M.E.

*please repost widely* *please repost widely* *please repost widely* *please repost widely* *please repost widely*

PLEASE read this paper if you are a M.E. advocate or sufferer and you use or support the terms ‘ME/CFS’ or ‘CFS/ME’…

—–

Problems with the use of ‘ME/CFS’ by M.E. advocates (Summary)
By Jodi Bassett, March 2008

Myalgic Encephalomyelitis (M.E.) is a debilitating neurological disease
which was formally classified as an organic neurological (CNS) disease in
the World Health Organisation’s International Classification of Diseases in
1969 with the code G.93.3.

M.E. is a distinct, scientifically measurable and testable, acute onset,
organic neurological disease. ‘CFS’ in contrast, is not a distinct disease.

The man-made financially motivated ‘CFS’ definitions describe no distinct
patient group. ‘CFS’ doesn’t exist. The use of the mixed term ‘ME/CFS’ by
some former M.E. advocates (and others) makes no sense at all, but is
unfortunately becoming far more common.

Many of those M.E. advocates who use the term ‘ME/CFS,’ say, (correctly!)
that the distinct neurological disease M.E. and the man-made bogus disease
category of ‘CFS’ are NOT the same.

But they then often also say things like; ‘ME/CFS is a serious disorder
which occurs in epidemic and sporadic forms, is initiated by a virus (most
likely an enterovirus), and is defined by severe fatigue…’ etc. which
incorrectly imply that the name and definition of ‘CFS’ is synonymous with
authentic M.E.

‘ME/CFS’ advocates often (bizarrely) pour scorn on the Wessely school’s use
of the term ‘CFS/ME’ and complain about how ridiculous it is that anyone
could think that ‘ME/CFS’ and ‘CFS/ME’ were the same thing. You also
sometimes read comments like; ‘This recent (M.E.) CFS study showed that
patients had….’ which implies again, that ‘CFS’ is just another name for
M.E.

It’s crazy! You just can’t argue that M.E. and ‘CFS’ are not the same, and
then use the term ‘ME/CFS’ (or ‘ME-CFS’ or ‘CFS/ME’) and expect to be taken
seriously or to get the points across that we desperately need to. Using
these terms CONTRADICTS whatever else you say about M.E. and ‘CFS’ not being
the same. It makes what you are saying completely nonsensical and illogical.

That’s only the start of the problem however.

Why is ‘ME/CFS’ being used so much more often?

It seems like using ‘ME/CFS’ is really just about popularity, very often,
sadly. That it is just about playing both (or all) sides and so keeping the
maximum number of people superficially happy generally, and superficially
happy with the individual advocate or group. These mixed terms are accepted
by many propaganda supporting ‘CFS’ researchers and ‘advocacy’ groups, by
people misdiagnosed with ‘CFS’ who don’t have M.E. as well as by some
genuine neurological M.E. patients. So supporting these vague mixed terms
makes an advocate or advocate group popular with the largest possible number
of patients and patient groups etc. But is that really a good enough reason
to work against the best interests of the patient group (or groups) they
claim to be advocating for?

None of the justifications made by individual advocates or advocacy groups
for using the term ‘ME/CFS’ hold up. These are some of the most common;

a.. The claim that we have to use the term ‘CFS’ (and so ‘ME/CFS’) because
some of the recent research (at least partly) involving M.E. patients has
been done under the name ‘CFS’ is bogus.
Of course we should reference such research that is relevant, but this
could very easily be done by writing a short explanation of the confusion
between M.E. and ‘CFS’ and including this in each article or piece of
research. This is the type of vital basic information that even without the
terminology issues, we need to get out there as a first priority anyway. To
say this notification has to be done with the terminology itself is
ridiculous. Yes the term ‘ME/CFS’ lets you claim some of the relevant to
M.E. ‘CFS’ research, but you also blindly claim the other 95% (or more) of
‘CFS’ research which isn’t relevant to M.E. and which directly harms M.E.
patients (etc.).

b.. The claim that ‘ME/CFS’ is about getting those M.E. patients
misdiagnosed with ‘CFS’ to be able to find information about M.E. also
doesn’t
hold up to scrutiny.
Again, yes, this is something that it is very important that we do, but it
is misleading to suggest that this can only be done using the main
terminology we use. It could be done so simply with a short explanation
included in each text. This way you would also avoid giving patients
misdiagnosed with ‘CFS’ who DON’T have M.E., the mistaken (and harmful) idea
that they do have M.E. and that M.E. and ‘CFS’ are the same, and so on.

c.. The claim that ‘ME/CFS’ is a temporary term, and that eventually the
‘CFS’ part will just drop off and our only chance for change is gradual
change is false.
This exact strategy has been tried and tried again for the last 20 years
and it has failed totally. Trusting that if we compromise ourselves now (by
mixing M.E. and ‘CFS’) that we will be rewarded with something that we want
to happen but which harms the interests of the vested interest group
involved - without any type of force being exerted on our part - is just
fanciful, unfortunately.

d.. The claim that we have to use this term because it is used in the 2003
Canadian ‘ME/CFS’ definition is also bogus.
Yes, specific parts of the paper are relevant to M.E. to some extent and
worth supporting, but this is NOT a pure M.E. definition, it is at best a
mix of M.E. and ‘CFS’ and does not select a 100% M.E. patient group. For
each good part of the paper there is also another scientifically
questionable and psychologically biased part. It reinforces some of the most
harmful myths about M.E. It does not justify the use of ‘ME/CFS’ by genuine
M.E. advocates.

For every problem ‘ME/CFS’ supposedly solves, it creates many more far worse
problems, and these same primary problems can all be solved simply in other
ways that have NO HUGE DOWNSIDES!

So who does benefit from Myalgic Encephalomyelitis being mixed with ‘CFS’?

That is the real question we should all be asking. The answer of course is,
yet again, powerful financial vested interest groups such as the medical
insurance industry, the vaccine industry, the government and others who are
directly saving themselves millions or even billions of dollars through this
‘CFS’ and ‘ME/CFS’ obfuscation.

It is hardly a coincidence that Professor Simon Wessely - the most powerful
and influential of the group of doctors who have made themselves the tools
of insurance companies - is the person credited with inventing the mixed
term ‘CFS/ME.’ The mixing of M.E. and ‘CFS’ in this way serves vested
interest groups well.

This is why so many of the very worst government reports (and so on) in the
UK, Australia and the Netherlands which talk about patients as if they were
mildly ill malingerers who could easily improve if not recover from their
‘fatigue’ if only they could be convinced to try CBT or GET, and so on, (a)
often use terms such as ‘CFS/ME’ or ‘ME/CFS’ in the titles and throughout
and (b) very often mix in some of the facts about M.E. (ie. symptoms,
history, severity/disability etc.) with bogus information about ‘CFS’ while
of course the entirety of the all important CONCLUSIONS given (ie.
aetiology, psychological status, improvement of symptoms, response to
treatments and recovery rates) are drawn exclusively from non-M.E. ‘CFS’
patient groups.

‘ME/CFS’ and ‘CFS/ME’ lets these groups have it both ways. They get to
continue happily with their unscientific and unethical ‘CFS’ obfuscation
agenda, and they get to do so with far less opposition from the patients
they’re harming, or even with the support of some of these patient groups.
This is why articles and studies which mix together facts about M.E. and
‘CFS’ are even more dangerous and harmful in many ways than pure ‘CFS’ ones.

The ‘ME/CFS’ concept: (a) is confusing, (b) is illogical, (c) strongly
reinforces the same misinformation which is the cause of our problem (ie.
that M.E. and ‘CFS’ are the same), (d) benefits the interests of the same
vested interest groups which benefit from ‘CFS’ in the exact same way, (e)
reinforces the position of vested interest groups that ‘CFS’ is a real
disease and that their bogus ‘CFS’ work/research is scientifically valid,
(f) does nothing to counter the real problems which are the definitions of
‘CFS’ and the involvement of vested interest groups in what should be a
purely scientific discussion, (g) greatly reduces the credibility of M.E. by
aligning it with the bogus disease category of ‘CFS,’ (h) lessens the impact
of the legitimate facts about M.E., (i) can work to cut M.E. off from its 70
year history, previous case studies, research and definition, and its
correct WHO classification and so on; just as ‘CFS’ does, (j) harms M.E.
patients and those misdiagnosed with ‘CFS’ who don’t have M.E. in the same
way ‘CFS’ does, and (k) holds back the fight for justice and recognition of
authentic neurological Myalgic Encephalomyelitis immeasurably.

The mixing of M.E. and ‘CFS’ was invented by these vested interest groups
and it is a tool they use to good effect and as much as possible. Clearly,
legitimate M.E. advocates using THE SAME TWISTED AND OBSFUCATING STRATEGY is
not a good idea and is only going to further their interests instead of
ours.

What can M.E. advocates learn from how other diseases have gained
recognition and justice finally?

Us using ‘ME/CFS’ now is as short-sighted as it would have been for HIV and
AIDS activists years ago, when the name was “Gay Related Immune Deficiency
Syndrome’ or GRIDS, to have pushed for the acceptance of ‘HIV/GRIDS’ or
‘AIDS/GRIDS.’ Or if multiple sclerosis advocates had pushed for the
acceptance of MS/Hysterical paralysis years ago instead of just MS. People
pushing now for the so-called ‘compromise’ of ‘ME/CFS’ is just the same -
just as unwise - except that ‘ME/CFS’ is far, far worse.

This is because our problem isn’t just that the term ‘CFS’ is offensive and
inaccurate but that the term ‘CFS’ is inextricably linked, and synonymous
with the DEFINITIONS of ‘CFS’ and that this fictional ‘CFS’ disease
construct is, along with the unethical involvement of groups with financial
vested interests in what should be a purely scientific discussion, the cause
of our entire problem!

If the aforementioned groups had not chosen to fight hard for what was
scientifically correct and right, instead of settling for the same sort of
unnecessary hijacking of reality that ‘ME/CFS’ advocates are suggesting.
then who knows how much this may have held these patient groups back, or for
how many years or decades their positive outcomes may have been delayed
because of it?

Successful advocacy campaigns have achieved success in the past through
guts, determination, a willingness to fight for the facts and what is
scientifically right, refusing to compromise (or sell) themselves and their
integrity. We have to do the same if we want the same type of success.

This isn’t just about terminology, it is about definitions

The terminology is often used interchangeably, incorrectly and confusingly.
But the DEFINITIONS of M.E. and ‘CFS’ are very different and distinct, and
it is the definitions of each of these terms which is of primary importance.
Having said that, very often, advocates that have compromised with the
terminology have also compromised and warped the definition of M.E. too.

So very often, where there’s smoke there’s fire!

When people use the term ‘ME/CFS’ it should set alarm bells ringing for you
to be very wary that they haven’t also ‘compromised’ and warped the
definition of M.E. and the known scientific facts about M.E. and that they
don’t now consider people with Fibromyalgia, various post-viral fatigue
syndromes or Lyme disease as ‘ME/CFS’ patients or as so-called ‘ME/CFS
sub-groups’ or support any other of the ‘CFS’ myths as relating to M.E.

Most often when the term ‘ME/CFS’ is used, the text refers to a bizarre mix
of facts relating to both M.E. and ‘CFS’ or instead purely facts relating to
any of the various bogus ‘CFS’ definitions. (The same applies to the terms
‘CFS/ME,’ ‘CFIDS’ ‘and Myalgic ‘Encephalopathy’ etc.)

In conclusion…

‘ME/CFS’ just doesn’t make sense. Why weaken our position so much for no
good reason? - because make no mistake, the unadulterated facts about M.E.
(the outbreaks of M.E. and the links to polio outbreaks (and the polio
vaccine), how much we know about M.E. and how much we knew even before 1988,
who is behind ‘CFS’ and why, and all the needless deaths and abuse knowingly
caused by the ‘CFS’ scam) are a far more compelling true story than any
wishy-washy and contradictory tales defending ‘CFS’ or ‘ME/CFS.’

We have to learn to see past the SUPERFICIAL and be far more critical about
which information (and advocates and groups) we accept as being
scientifically sound, relevant to us, and in our best interests too. The
fact that an article might merely mention some facts about M.E. along with a
lot of ‘CFS’ propaganda, or say that ‘CFS’ or ‘ME/CFS’ is ‘real’ or ‘is not
psychological’ or merely mention some physical abnormalities or implicate
various viruses in some way, or use the term ‘ME/CFS’ or ‘CFS/ME’ is nowhere
near good enough.

(Most of the very worst articles and reports do many or even all of these
things!)

Many supporters of ‘ME/CFS’ have a tie to the big vested interest groups
involved, while others are motivated by their own vested personal interests.
Undoubtedly, some M.E. patients are simply too severely ill and disabled to
do more than very basic reading or to engage in any type of critical
thinking and so have been persuaded to support ‘ME/CFS’ by other advocates
they’ve trusted to steer them in the right direction - and have had that
trust cruelly abused. There are no doubt many different reasons for the rise
in ‘ME/CFS.’ But regardless of the different motivations, the results will
be just the same unfortunately. That’s the problem.

If you open your mind and forget for a minute about how commonly ‘ME/CFS’ is
used and about all the justifications you’ve been given for it - and look at
it logically - it really is hard to come to any other conclusion than that
‘ME/CFS’ can only impede our fight for justice and recognition.

The time for hoping for non-confrontational gradual change, compromising
ourselves for our abusers and trying endlessly to work within the completely
bogus ‘CFS’ framework ON THEIR TERMS has to be over. 20 years is enough.

The definition of INSANITY is doing the same thing over and over and
expecting a different result.

It is time that we fought for authentic Myalgic Encephalomyelitis in name,
definition and World Health Organization classification, without compromise.
It is also time we all fought for the bogus financially motivated disease
category of ‘CFS’ to be completely abandoned - without compromise - for the
sake of every patient group involved; M.E. patients and all those
misdiagnosed with ‘CFS’ who do not have M.E. alike.

Let’s do exactly what these vested interest groups are hoping we WON’T do!

——-

For more information please see the far more detailed full-length text
(which also includes some excellent quotes from many other M.E. advocates
and experts on this topic) at:
http://www.ahummingbirdsguide.com/problemswithmecfs.htm

See also: The Terminology and Definitions Explained and What is Myalgic
Encephalomyelitis?

To download or print copies of this text in Word or PDF formats, click on
the link above.

A final plea: It is never to late for YOU to abandon ‘ME/CFS’ and to start
fighting for M.E. in name and definition. We need you fighting hard and
strong for M.E., yesterday! Any type of blame etc. for the past is
irrelevant and unhelpful. What matters is now, and stopping things becoming
even worse. The need is so urgent.

Permission is given for these documents to be freely redistributed by e-mail
or in print for any not-for-profit purpose provided that the entire text
(including this notice and the author’s attribution) is reproduced in full
and without alteration. Please redistribute this text widely.

If you would like to link to this paper, please do so by using the links to
my site provided rather than a reposting of this text on a third-party
website as only the version on my site has live links and will continue to
be updated.

Thank you to all those M.E. advocates who offered valuable criticism and
suggestions as I was writing this paper.

Best wishes everyone,
Jodi Bassett
–
A Hummingbirds Guide to Myalgic Encephalomyelitis:
www.ahummingbirdsguide.com
–
‘Any disease process that has major criteria, of excluding all other disease
processes, is simply not a disease at all; it doesn’t exist. The CFS
definitions were written in such a manner that CFS becomes like a desert
mirage: The closer you approach, the faster it disappears.’ Dr Byron Hyde
M.D. 2006

The current confusion over the name in the US is that CFS, the fabricated
condition that somehow became officially synonymous with the real disease
Myalgic Encephalomyelitis, is to be cunningly renamed Myalgic
Encephalopathy. The problem is that both names share the initials ME, and
since Myalgic Encephalopathy will retain the terribly misleading CFS
criteria this name is nothing more than a clever diversion to draw our
attention away from the real issues. John Anderson, M.E. advocate
The entire concept of a “New Name” is wrong. There is no need for a “new
name” for an “old falsehood”. There already IS a correct name, Myalgic
Encephalomyelitis with a correct ICD code. We need the correct name and the
proper definition, not a new face on an old lie that still functions to
obscure and deny the reality of Myalgic Encephalomyelitis. We need to
educate ourselves, families, doctors, social service people, politicians,
journalists, etc about the existing disease Myalgic Encephalomyelitis. Not
fall into yet another ploy of those who have hidden the truth. M. Beck, M.E.
patient since 1983

CARE 4 M.E. CENTRES

Are imaginary ~ just like this killer disease…

I am crying as I struggle to type this message through my own weak body. I’m hardly capable of crying anymore, so this is a big deal. Huge. I am so very, very, bloody sad… Why?

Because I know of  a young woman with very severe M.E. who is dying.  She is not just dying, she is dying alone in this world, hidden away behind the closed doors of hope.  You will never know of her or that she even existed. Abandoned long ago by her family & friends, so common an effect of this cruel, slow killer, she is waiting for death to come. Her heart is giving out hour by hour and there is no help.

All avenues have been exhausted. She has tried so very hard to be heard in her whispers. Her relapse is promising to be final this time. Endless, incorrect medical tests revealing no culprit - just stealing her life force away from the sheer effort she somehow mustered over the years to attend these futile appointments. There is nothing left to do but wait it out and pray her incredible suffering is over swiftly.  No one goes to her dwelling place. Not a soul. No one phones. She doesn’t exist to anyone.  She is a medicare number, that is all …

I will only know she has left the space of this earth when her short e-mails dwindle to a complete stop. She will not be missed by anyone except her very few on-line contacts.  Her body will not be found for days or weeks.  I already know I may eventually become the alert.  She is one of us home alones in the on-line community.  Sites like this have been her only contact with any form of caring humanity for years…the only place she feels understood. We are her only friends and we are as invisible as she…united in the torture of this hellish disease.

I care deeply about this person I have never met and never will get to meet. I want to scream until I am spent, HELP HER! This could be your child, your sister, wife or mother. HELP HER, HELP US ALL!  Is there really nothing and nowhere to turn  for so many severely affected MEites?

The continued social and medical denial of this appalling neurological illness means that the need for an M.E. Respite Centre in almost every State or City worldwide is now an EMERGENCY. This young woman should not be going through this alone for God’s sake!  We do not allow our animals to suffer the way she is suffering…

I put the call out for you all to start making real some noise about this and say enough!  Stop contributing to such cruelty by your silence.  This is not acceptable! 

I call to all the powers that be, to those who are immune and deafened by yet another charitable cause crying for help. To the Governments, to the Pharmaceutical Industries, to the Corporate and Business worlds, the generous Richard Branson’s of this world, the Media giants, those in sports, entertainment and the arts, and to the wealthy, blessed individuals who have the money to help buy or donate to the cause a suitable, peaceful place that can become a Care 4 M.E. Centre right here in Australia, an old farm, an old motel, land, cabins, anything! Right now, before we have another Alison Hunter, Sophie Mirza or a nameless victim of M.E. to bury. I will do it with my bare hands if that’s what it takes - please do something positive to help me achieve this - you can’t take your money with you but you can change so many lives and death experiences for the better…

There are Ronald MacDonald Houses, Cancer Respite Centres, AIDS Clinics, Junkie Rehab Centres, Day & Night Respite Programs, you name it, it’s out there…all except some proper, practical help for sufferers of severe M.E. and related neurological illnesses. What is going on? Why are we not even on the wish list? Please hear me on this woman’s behalf…and the millions of home alone sufferers facing the same fate…

Please tell me what to do. I don’t know where to start with this.

Thanks for reading it…

Blessed Be. Zarii xxx

A news report about M.E. death & Sophie Mirza:  

I noted the primary cause of death on the Death Certificate states Renal failure as a consequence of chronic fatigue syndrome, not actually M.E. as they are reporting.  Even the media doesn’t know the difference and in my opinion, this is continuing to sleight the family as well as the M.E. community.  The Coroner should have used the correct W.H.O. definition of M.E., not the psychiatric term “CFS”,  considering everything poor Sophie was put through:

http://www.youtube.com/watch?v=0Y_T5ylWUv4&feature=related

A link to Sophie’s Story:

http://www.25megroup.org/Campaigning/Awareness%202006/Sophia’s%20story/sophia’s%20story%2006.htm

A link to Alison’s Story:

http://www.ahmf.org/smh040502.html

A link to Casey’s Story:

http://www.cfids-me.org/marys/cfsacf05.html

A link to Your Story: hhtp://www.?_________htm I hope not.