1. Patients launch $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!
Hyperparathyroidism: An Often Overlooked Differential Diagnosis to ME/CFS
Andrew Gladman puts hyperparathyroidism under the microscope, exploring what the disease is, how it can mimic ME/CFS in presentation and how it is treated.
Discuss the article on the Forums.

Letter that I just wrote to my MP

Discussion in 'Action Alerts and Advocacy' started by thefreeprisoner, Jan 26, 2010.

  1. Hi all,

    Here's a letter that I just wrote to my MP. Feel free to copy, paste and edit as you see fit, if you wish to write to your own MP in similar fashion. Now is a VERY good time what with Kay Gilderdale in the news.



    Dear xxx xxxxxxxxxx,

    I was shocked to hear about the recent trial of Kay Gilderdale following the suicide of her daughter Lynn Gilderdale who suffered from a severe form of M.E. (myalgic encephalomyelitis) which causes pain, muscle weakness, disturbed sleep, inability to balance and other cognitive difficulties.

    I have suffered from this same condition at two points in my life (in 2004 and then again for the last 3 months) and have been housebound and generally unable to walk for most of that time.

    However, there is nothing the doctors can do for me, because since 1959 when the disease was first discovered, the MRC has put barely any money into finding a biological cause for it (especially when compared with rarer diseases). There is no proper blood test and no cure. Treatments offered currently have only marginal effects and it some cases can make the condition worse.

    Given that ME is more prevalent in the population than Multiple Sclerosis (estimates put the figure at 250,000 sufferers -- that's more than the entire city of Nottingham) and that life expectancy is reduced by 25 years, we need research and we need it urgently, before thousands more happy, hard-working people suffer the same fate as Lynn, dying slowly in agonising pain, unable to move.

    I would love to be able to visit you for an appointment to talk about this but I am unable. Please call me if you wish to visit so I can explain to you more fully the effects of this condition and what might happen if it deteriorates.

    In the meantime, please can you encourage the Government to allocate much more funding to research into the biomedical cause of M.E. This funding should represent the appropriate amount of money lost to the UK economy which runs into the billions due to sufferers' inability to work. Currently the amount of money allocated to M.E. research is derisory. If a cure for M.E. was found then many thousands of people would be released from reliance on benefits and back into full-time work.

    Yours sincerely,
  2. Jenny

    Jenny Senior Member

    Messages:
    1,224
    Likes:
    176
    London
    Brilliant Rachel!

    That's spurred me on to seize the moment. I used your structure, adapted the content a bit, said a bit about the travesty of the NICE guidelines and sent it to my MP.

    I've been meaning to write to her for months.

    Thanks so much!

    Jenny
  3. flybro

    flybro Senior Member

    Messages:
    581
    Likes:
    5
    pluto
    excellent rachel

    Thank you

See more popular forum discussions.

Share This Page