Please read, i am trying to raise awareness

Discussion in 'Fibromyalgia Main Forum' started by viks, May 6, 2003.

  1. viks

    viks New Member

    hiya i am trying to raise awareness of ME and severe ME, this is the offical press release from the site brainfog, wondered if you vould take a min or two to read it and maybe send it out to friends and family? Thank you, love n hugs viks xxx

    hiya, this was written by someone from a site called brainfog (it has a poem on by me though), the idea is toget as many people to sit up (excuse the pun!)and listen to what CFS really is.





    ME Awareness Week 2003

    May 12th - May 18th



    - sent to you on behalf of all the members of the international online
    association 'BRAINFOG!!' -



    The following piece of writing was written by Vikki George. She is just 18
    years old. Although she has had the symptoms of the illness ME/CFS for much
    of her life, she has been officially ill for 9 years. For someone so young,
    she has endured so much but somehow she has managed to keep going. She is a
    remarkable inspiration to so many of her fellow Brainfoggers from all around
    the world who are also living with this isolating and debilitating illness.



    She wrote this powerful piece of writing as a way of conveying her life to
    those who believe this illness is just about fatigue when it is in fact
    about so much more! For many people, this extreme degree of ME is a reality
    and not one that we often hear about, as communication at this level can
    often be impossible:



    Can you imagine?

    Can you imagine waking up not able to move, not even a finger,

    Wiggle a toe, move an arm or a leg?

    Can you imagine laying there not able to move, but vomiting,

    Being too scared to breathe, choking till your parents roll you over?

    Can you imagine being so ill you can hear the voices of your parents but not
    know who they are?

    Or hear English but not understand a single word?

    Can you imagine going months on end without seeing anyone outside the
    family?

    Not a single soul, not even a milkman or a passerby.

    Can you imagine being in so much pain that you just want to give up?

    Feeling like there are thousands of hot pins sticking in you?

    Can you imagine going years and years with a continuous migraine,

    Not easing for a minute or a second of your life?

    Can you imagine going over a year without sitting up or being propped up,

    Feeling so dizzy that you can't see straight?

    Can you imagine feeling like you are moving, falling over backwards,

    And at the same time rotating sideways all the time?

    Can you imagine going 6 months without going downstairs in your own house?

    Not seeing the living room, kitchen, garage, or garden?

    Can you imagine life like this?

    I don't need to imagine, after all, I live like this every single day.

    Still think ME is just about feeling tired?



    by Vikki George - Feb 03



    ME Awareness Week - 12th 18th 2003

    ME Awareness Week coincides with the birthday of Florence Nightingale, who
    after returning from the Crimean war spent a long period of her life
    housebound whilst displaying the symptoms of ME. Until now there has been
    little acknowledgement of the devastating impact ME can have, despite it
    being around since at least the 19th century.



    Now for the first time in history, the UK Government officially recognises
    the illness. The Chief Medical Officer, Sir Liam Donaldson issued a major
    report in January of this year describing ME as 'a disease in the wilderness
    '. He also conceded the terrible prejudice, which has afflicted the lives
    of the thousands of people who develop the illness each year.



    What is ME?

    ME (Myalgic Encephalomyelitis) / CFS (Chronic Fatigue Syndrome) is an
    incurable chronic condition which has many symptoms, commonly including
    pain, exhausting fatigue, sore throats and swollen glands, difficulty in
    thinking clearly, and an overwhelming malaise which has been described as a
    feeling of being "poisoned". It is an extremely debilitating illness, which
    leaves many people with ME, bed or house bound for many months and in many
    cases for years on end. The causes of the illness remain a mystery despite
    years of research which has shown many anomalies in the immune, nervous and
    endocrine systems of sufferers. The best available estimate is that it
    currently affects 240,000 people in the UK, 40,000 of whom are children.



    Because of the mystery surrounding ME, there is widespread ignorance and
    misunderstanding about it on the part of the general public and sadly of
    many GPs. This increases the difficulties facing sufferers. A recent
    report by the Chief Medical Officer (CMO) has done much to validate the
    illness, and the Medical Research Council (MRC) have now finalised a
    Research Strategy. But this is only a very small drop in the ocean. The
    only thing that is really known about it is that it has ruined many
    thousands of lives across the globe and will continue to do so for years to
    come unless Awareness is heightened and more is done to fund Research so
    that a cure can be found.



    What is 'The Brainfog Association'?

    'The Brainfog Association', www.brainfog.org is an international online
    community founded and created two years ago by Ally, an ME sufferer from
    Sussex, England, now 27 years old. It was designed specifically to offer
    support and help to people worldwide with the illness ME through fun,
    friendship and understanding. It is named after one of the common symptoms
    of ME - an inability to think clearly. Brainfog currently has over 700
    members, who rely heavily on it to provide crucial social contact in the
    isolated and lonely world of the chronically ill. Although it is quite
    clearly a website for people with ME, there is one obvious difference from
    many other online ME support groups; this is clear from the motto of the
    website: 'BRAINFOG!! - Keeping the lighter side of ME and life, well and
    truly ALIVE!!'



    If you would like more information about ME and the website Brainfog, please
    e-mail Ally on ally@brainfog.org or visit the 'The Brainfog Association' at
    www.brainfog.org

    Alternatively, if you feel you are in the position to offer a donation to
    'The Brainfog Association' to help fund the ongoing development of the
    website / forum, please e-mail the Brainfog Treasurer, Fiona Sanderson at
    treasurer@brainfog.org for details.



    Useful references

    BRAINFOG !!: http://www.brainfog.org/

    Action for ME: http://www.afme.org.uk/

    The ME Association: http://www.meassociation.org.uk/

    25% ME Group: http://www.25megroup.org/

    CMO Report: http://www.doh.gov.uk/cmo/cfsmereport/index.htm

    MRC draft research strategy:
    http://www.mrc.ac.uk/index/public-interest/public-press_office/public-press_
    releases_2003/public-1_may_2003a.htm

  2. sujay

    sujay New Member

    Vikki, thanks so much for working to raise awareness of this disease. As a family physician I cared for FM/CFS/ME patients for over 20 years. I thought I was sympathetic, but I didn't have a clue. I finally realized this when I got sick in the fall of 2001. What really broke my heart, though was seeing my bright, beautiful, athletic son come down with the same symptoms at the age of 10. But there's hope, Bikki, because both of us are now well on the road to recovery. I check all my patients for coagulation abnormalities (see Jellybellies wonderful posts on hypercoagulation and ISAC for details), and if they can't afford the tests I still work under the assumption that that may be an underlying problem (though treatment options are much more limited without more clinical studies to back up this theory.) See if your doctors will look into the possibility of Hughes' Syndrome (sometimes referred to as Anti-Phospholipid Antibody Syndrome). The ISAC Panel from HEMEX Labs is very helpful, and Dave Berg would be happy to talk to your doctor, as would I. Please let me know if I can help in any way. Just don't give up your fight or better help. I've got young people going to college and piloting airplanes who once thought they'd never get out of bed except for visits to the doctor.
  3. billiegail

    billiegail New Member

    Thank you for sharing and I'll pass it along.
  4. insomniac1

    insomniac1 New Member

    hi i am so sorry to here how you are i cant immagine it altho i have been dx with cf and fm i am not as severe as you i will pass along your message and i will pray for you take care kris
  5. Bambi

    Bambi New Member

    so ignorant and confused about CFS. I had a close friend with it and I've read a lot about it but I still don't really know just what it is. My friend was just exhausted all the time,
    had trouble just standing at times was too much
    for her. It was a tiredness that she just couldn't fight or overcome. Then when I got diagosed with FM I read a lot and HAVING it it's
    easier to understand the FM. Some of what you read says CFS doesn't have the FM pain and some
    says it does. My friend had pain but not like I
    do. She was always pitying ME my pain, but the
    way she looked and felt all the time I thought she was worse off than I was. Does CFS have the
    severe pain like FM or not? I am truly asking out of interest and not trying to be rude. Hugs,
    Bambi
  6. tansy

    tansy New Member

    Thanks so much for posting this topic and the brilliant and very personal poem describing just how awful severe ME is.

    Like you I've been reminding people that May 12th CFS day in the states and that it's ME Awareness week from May 12th - 18th.

    It's such an opportunity for us, with the help of family, friends, and colleagues, to get the message across.

    I hadn't known about Brainfog, yet more useful information on this site.

    Cheers

    Tansy