Home Page: Welcome to MIMES
BAY ISLANDS & REDLAND SHIRE ON-LINE INFO SITE
Breaking News from UK: Go to:
http://news.bbc.co.uk/2/hi/health/7378440.stm
Everyone, please sign the ~*GUEST BOOK*~ and feel free to leave a comment if you wish…it’s nice to see who has visited!
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Thank you very much for visiting this site and I extend a warm & foggy welcome to you. 
I hope that you will find it to be of some interest. It has been independently created by me, Zarii, a Macleay Island/ Redland Shire resident and M.E. sufferer for over 20 years, to help provide information, awareness, education, links & encourage local contacts concerning the debilitating neurological illness MYALGIC ENCEPHALOMYELITIS otherwise known as M.E. and ofttimes linked with the broad spectrum term “CFS” - Chronic Fatigue Syndrome and FM - Fibromyalgia. (See in the left hand column under Pages: Info & Issues… for further mention of that enlightening subject.)
As there appears to very little awareness around this particular small community concerned with chronic pain and silent suffering, I feel it would be appropriate to include some links, info and posts concerning other illnesses that are considered similar under the broad spectrum viewpoint.
Please keep in mind that whilst I endeavour to supply objective or interesting information, it takes a lot of time, effort and patience to source good articles, links, write posts/pages etc. and review things for here. Neither MIMES nor myself endorses any particular method, product, treatment or individual mentioned on this site unless otherwise stated. Look in Archives for feature articles of interest. This site is a slow work in progress for sure and contributions are most welcome!
NEW TO “CFS” FIBRO OR M.E.? ~ GO STRAIGHT TO *x* ~NEWBIES~ *x* FOR QUICK-LINK INFO ↑
~ MIMES MINI NEWS REEL ~
Please blog for ME/CFS on this day ~ join in to raise awareness!
Go to general interest or Activism/Awareness for link.
RECOMMENDATIONS:
I encourage anyone suffering from M.E./CFS/FM or who finds themselves in a similar neurological/physical crisis to check out the highly comprehensive data this site provides on the matter: http://www.geocities.com/tcjrme/
LATEST POSTS:
*X*~NEWBIES~*X* A quick-link minimal guide to the top sites for urgent access to ME/CFS/FM & Advocacy info…
SEX & M.E. Things to consider…always a popular “hit”.
ACTIVISM/AWARENESS: Support the “Peaceful Protest” outside The Royal Society of Medicine in London if you can - it’s happening on Monday, 28th April 2008, 1pm-6pm, Bigwig Shrinks will be confering that it’s definitely all in your head otherwise! Raise a whisper if you can…see article…
WAXING LYRICA-L: A silly Zarii rant on Pfizer’s new old drug for treating FM - Lyrica. Pfizer says FM is real! So now your Doctor will believe you’re having fibromyalgic pain…hopefully lots of it. Pain = lots of Lyrica = lots of commission… Pfizzle pfazzle… also can make you very fat, dizzy and blOAted…
M.E. THEORIES: Did aliens implant you with “CFS”? Or was it something in the water? Otherworldly spectulation, conspiracy theorists and much more…links & rants - join in the lunacy…
MEDICAL CONTACTS:
Please add to our Pages list if you are lucky enough to find an interested, independently thinking GP, or better still, a Specialist who understands M.E./CFS/FM etc. The situation in most areas is appalling and it’s high time we were heard and not written off as crackpots - The suffering has to stop before there are any more deaths and there is only one way to do that - Unite and make them listen before any more of us have our lives deliberately destroyed through medical ignorance and neglect… Come on, get passionate while you still can!
Check out the mega-blog in Categories: Macleay Island ~ Do you have a touch of Island Sleeping Sickness?! Are you being organically anaesthetised by Mangrove gases? A lighthearted, yet poignant pondering…
In Pages: Losing M.E. Self ~ An ironic, yet tongue-in-cheek blog about the reality of living with the knowledge M.E. and other neurological illnesses can dumb you down…fast! = M.E. Dementia.
MIMES MOOTS:
At this time, MIMES has had one informal meet & greet at Pats Park, last year, complete with gluten free bickies! It would be nice to have another sometime soon or even attempt a BBQ but it’s a difficult thing to plan ahead with many of us being stuck in a highly unpredictable illness. Please email me or phone if you’re interested in getting together - see contact details at the bottom of this page. (((HUGS)))
MURMERING MIMES:
A local fellow, a former severe M.E. sufferer of 30 years, who has made amazing progress has some wonderful insights and theories on neurochemistry. He has kindly offered to provide a talk anytime there are a few of us wanting it, so that was very community spirited of him - hopefully the offer won’t be wasted. Contact me if you’re curious too. Thanks!
MIMES á la foggy MEALS
I for one, would like to see a bit of community spirit happen here and try and organise an emergency soup/food round up…
Those who are a whizz in the kitchen or are able to make nutritious simple soups, could easily make a little extra to pop in the freezer for those of us experiencing times of severe relapse. Vegan soup such as Pumpkin feeds all! As my M.E. fluctuates a lot between 20-40% in my current relapse, I will try to deliver (free) to the doorstep where needed, but reliability may be a factor. An able bodied supporter or more energetic MEite would be ideal. I’m happy to lend my vehicle to any licensed driver if I’m too sick to do it myself. I know when I’m really bad, I get sick of having to live on Sustagen or Lucozade! Sometimes I go without food altogether as no strength to stand and make anything. It doesn’t cost much to make an extra serve of something good. Doesn’t have to be soup either, but easily digestible foods are essential. Containers would have to be marked if the contents included lactose, gluten, nuts or other known allergens. I can store extra food in my freezer if necessary to aide quicker delivery. What do you think?
MIMES VOLUNTEERS NEEDED - Oh, no, not that subject!
I will state the obvious anyway and I realise a few people will be “suddenly very busy or far too ill” - we need volunteers for very basic help shopping on a reliable weekly run, lawn trimming and basic light housework. Emergency pet care when someone is in hospital etc. Am I dreaming here?! I can do what I can do - the mind is willing but the body ‘aint always able… You try getting any subsidised help in any of these things and because you have M.E./CFS you will be told to get over it!
Unless you have a more “credible” illness (regardless of ME/CFS since 2002 being a W.H.O recognised genuine illness - albeit the Wesleyan crusade’s focus is on psychiatric rather than the equally recognised neurological dysfunctional aspect of it) you don’t stand a hope in hell of getting any help especially on the Bay Islands. That’s why it’s time to help ourselves and I have faith that we can if we are all willing to do something, no matter how small - even raising awareness that we exist and M.E. is real, on-line would be a help! We need to communicate - get a phone tree or email loop started. I’ve asked around a bit and people are all for this as long as it’s free and they don’t have to help. Well, we are all precious and all in the same boat. Selfishness and self-centeredness will guarantee it sinks before it gets a chance to float. M.E./CFS is by nature an isolating, lonely illness - but it doesn’t have to be so bad if people are willing to bring about positive change.
I know of some Bay Island dwellers who have other “acceptable” chronic illnesses and they are having difficulty too. I was told that although they have a part-time subsidised worker assigned to them, this angel is rarely seen as is often having to be on the mainland attending “patient care modules” or is off sick, a lot - I hope they aren’t coming down with a case of ME/CFS then… It’s not the service’s fault as such, it’s a national disgrace for such an affluent country. More on the politics in another blog later! Grrrr! 
I hope a few kind souls will step up and offer some help not just to our cause but other members of our community suffering in similar ways. It’s what’s needed and only we have the power to make that happen, so come on, pay good karma forward and brighten some-one’s day, even if you are sick yourself…
ON M.E. SOAPBOX (What’s new?)
This rave is not suitable for the front page of such a wonderful site! Please click on the same title under Pages if you want to know what my latest gripe is…you’ll be shocked and you could be next if you have a neurological illness…
MIMES MINI COMMUNITY FORUM
This site is also designed to serve as a mini forum for questions and answers and personal story sharing etc. It’s also fine to just let off some steam or socialise! Whilst I am not a medical doctor or making any claim to be an expert, I will do my best to find out the answer to anything related you may be wondering about and maybe having difficulty sourcing.
The Internet is jam packed with wonderful M.E/CFS/FM sites and some are kept up to date and others, alarmingly, seem to be unattended, with long dead or misleading information. There are many differing schools of thought regarding this illness, its causes, its progression and prognosis. I will aim to provide an objective view of things, once we have established some basic myth busting! I highly recommend you read through the site and links before commenting. Education is the key!
MIMES MUSINGS
I invite anyone, whether you are a sufferer, carer or supporter, to please leave your comments or better still, contribute your own experience to this little site. It would be interesting to have a comparison of symptoms and how they affect your life and the lives of those around you. Please write away to your heart’s content. You can remain anonymous or use a nom de plume, whatever you are comfortable with. I am the only moderator/editor at this point and know you’ll understand if it takes me a while to post your longer essay style contributions - as you know, the nature of this illness is highly unpredictable, on a moment to moment basis. I will do my best as health permits…
M.E./CFS/FM SUPPORT IN S.E.QLD
The nearest information network & support system I could find in South East Queensland is a registered charity, The ME/CFS/FM Support Association of S.E. Qld. Inc. now based in Toowoomba - a little out of the way for many Brisbane’ites, especially us Bay Islanders. Apparently, Queensland Health has asked them to serve as the peak body for all areas of Qld. I’m sure they do a great job. Their link is under ME/CFS Support in the right hand column.
MIMES CONTACT DETAILS
So, in closing, I hope this humble site will bridge a rather wide gap, (pardon the pun), from this tiny Island, to the World via the marvel of the Internet…we need to pull together in this community urgently. There are a surprisingly high number of M.E./CFS/FM sufferers existing here with virtually no support at all…some of these folk are extremely ill.
To post longer stories, or for personal enquiries you can contact me privately via e-mail on: zarynity@yahoo.com
Or Phone: 3409 4704 (Strictly M-F 12-2pm only please and NO visitors without an appointment ~ thank you)
MIMES = What you sometimes have to do with your hands to explain what you mean when your brain is so foggy it won’t form the words to speak! Just an ironic synchronicity!
Blessings and take care,
Zarii.
Disclaimer: Information published by or linked from this site, including comments on medical treatments, is not intended as medical advice to readers. It should not take the place of medical advice or care from a licensed health care provider. Views and beliefs expressed here are not necessarily those of the site creator.
