1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
In Brief: The Adrenal Glands and ME
The second in a new series of ‘In Brief’ articles, where Andrew Gladman provides a helpful insight into the science behind fairly common topics, exploring how they relate to ME/CFS. This time he discusses the adrenal glands and why they can be such a talking point ...
Discuss the article on the Forums.

COUNT ME IN Facebook Campaign

Discussion in 'Action Alerts and Advocacy' started by Judy Frederiksen, Feb 17, 2011.

  1. http://www.facebook.com/event.php?eid=104227606318513 if you do facebook.


    " COUNT ME IN

    A global event from your own home to WPI

    20th of every month

    Event creators: Maxine Middleton, Vikki Walker, Paul Kayes, Jo Best.

    Last month, on 20th December, 4 papers were published in Retrovirology, with a 5th that was a commentary on the other 4, claiming that findings of the retrovirus XMRV were due to contamination by mouse DNA.

    The original studies had been in patients with prostate cancer and also Myalgic Encephalomyeltis (also called Chronic Fatigue Syndrome in some countries hence our use of ME/CFS here) and were published after extensive peer-review in the prestigious journal Science in October 2009.

    The studies published last month related only to PCR testing scientists finding XMRV and MLVs had previously warned of the limitations of using only PCR to find XMRV and were already well aware of these risks in research, ensuring that their own results were not affected by contamination.

    Greg Towers of The Wellcome Trust Sanger Institute stated that XMRV does not cause ME/CFS, a claim that cannot be supported by these contamination papers. It was then widely publicised that these papers cast doubt over previous research.

    Many of us fear this could have an adverse effect on funds for further biomedical research for ME/CFS and other neuro-immune diseases, and could prevent other scientists from getting involved in this important research, which is of particular interest to patients with ME/CFS, but is also relevant to those with other conditions such as Fibromyalgia, Atypical MS, Autism, Gulf War Syndrome and also some cancers.

    The Whittemore Peterson Institute is a non-profit organisation that was set up because the founders' daughter Andrea Whittemore, has Myalgic Encephalomyelitis. Their mission is to find a cure for neuro-immune disease and they are leading the way in this cutting edge research.

    WPI President, Annette Whittemore, issued the statement here on 4th January 2011 in response to these contamination papers: http://www.wpinstitute.org/news/docs/WPI_XMRV_010111.pdf

    A retroviral link with ME/CFS was first discovered by Elaine deFreitas 20 years ago but did not gain funding and was dismissed. WPI has itself has been turned down 6 times for research grants from public funds. Many patients are now determined that this will be not be allowed to happen again. We have been left to remain far too sick for far too long and, tragically, many have not lived to see the dawn of this new and exciting avenue of biomedical research.

    Patients have had enough of certain researchers and practitioners appearing intent on either ignoring or disputing all research that does not accord with their false belief that ME/CFS is not an organic disease.
    ME sufferer Maxine had the idea of using the 20th of each month to donate to the Whittemore Peterson Institute to show our trust and support for the integrity and quality of their ground-breaking scientific research.

    We realise that this research may conclude that our disease is not caused by a retrovirus - but until then it is a very plausible explanation for the chronic, on-going nature of the illness and its numerous and varied symptoms, and is not incompatible with other viral involvement in the disease. ME has always been known to be post-infective, hence its alternative name at the World Health Organisation International Classification of Diseases -10 G.93.3 - of Post-Viral Fatigue Syndrome (for UK, CFS is annexed to this).

    It simply makes sense to us that this vital research continues until definitive answers are found.

    Many of us each donating a little each month will add up to a lot and will show how many of us support the work of WPI by helping them to help us.

    We believe that this fund-raising campaign will send a powerful message to our governments that we demand high quality biomedical research aimed at confirming - rather than denying - the biological cause of our disease, and will also encourage researchers around the world to go forward with this vital and long-overdue biomedical research.

    If you think this campaign is a good idea and would you like to show your support for The Whittemore Peterson Institute for Neuro-Immune Diseases in their mission to find the true cause and a cure for neuro-immune disease then click YES on this event page to say, COUNT ME IN.

    We are liaising with the WPI for the easiest ways for those of us who wish to make a small monthly donation via credit or debit cards,or PayPal, and we will let you know as soon as the accounting system has been set up and is ready to roll all donations will be paid directly to the WPI.

    If you feel strongly that you want to start donating straight away, then you can donate via the WPI website or the Cure for ME Causes on Facebook: if using PayPal, put COUNT ME IN under "special instructions".

    http://www.wpinstitute.org/help/help_donation.html
    (no minimum amount)

    http://www.causes.com/causes/399439-cure-4-me?m=97969829
    (causes has a $10 minimum amount)

    With thanks to Angelina and Kelleen at WPI for their help and advice."

    Let's spread this initiative across the whole world wide web! So far, it's on FB, Foggies and PR as well as here. Anyone on Co-Cure? All the rest? Bloggers?

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