stranger and stranger

Pensées sur mon anniversaire

The following email appears as an addendum in stranger and stranger. It was sent to all my friends and relatives in my email address book on my 27th birthday in the year 2000. A lot has changed in the world since then but I am still unwell, as are many hundreds of thousands of people with ME/CFS.

Birthdays are never easy when you are unwell but writing today on my 44th birthday I feel more positive about the prospects of understanding my illness than I have done in previous years due to the progress that is being made in biomedical research. After years of neglect by doctors and medical institutions, some of the world’s leading scientists are finally starting to take an interest in ME/CFS. In the past year several papers have been published which reveal significant metabolic, neurological and immunological abnormalities, giving patients around the world desperately needed hope of diagnostic tests and effective treatments (see links below).

03 May, 2017

In the last few years I have been asking for donations to ME Research UK and Invest in ME Research instead of presents for birthdays and Christmases. If you would like to make a donation please go to: www.justgiving.com/RobIiME.

My 40th Birthday message on JustGiving

In an attempt to take something positive from turning forty I’ve decided to use the occasion to try to raise some money for ME Research UK.

As well as seeking donations from anyone who would like to support the cause, I am also asking those who might otherwise have given me a present to make a donation instead. Cards, letters and messages will all be very welcome but no presents this year please.

Birthdays have not been the easiest time for me since I’ve been unwell, and significant birthdays are harder than those in between.

My eighteenth was great. Mum and Dad laid on a lavish dinner party for about twenty of my friends, after which we all descended into the basement to carry on partying for most of the night. It was a fun time in my life and an evening that I will never forget, not least because it was the last party I had.

Subsequent birthdays have been less cheerful, although I am grateful to have such happy memories from my college days. Others, like Emily Collingridge, have been less fortunate. She suffered an excruciating and prolonged death in hospital last year at the age of 30 after battling against severe ME since the age of six. (If you have not read her story, I would urge you to do so on the ME Association website

For the twenty years that I have been unwell, government funding of biomedical ME research through the Medical Research Council has been non-existent at worst and inadequate at best*. There is no diagnostic test and there are no effective treatments. Consequently, supporting charities such as ME Research UK is vitally important.

For all the pain, misery and loss, I know that I am lucky to have the support of family and friends, which many with my diagnosis do not. I know that many of you have given generously in the past but if I could persuade you to make a donation to ME Research UK for my fortieth birthday it will surely help to make it a happier occasion.

Thank you for your support. I look forward to inviting you to my next party.

Rob

*According to data available from the ME Research UK website, annual government funding of biomedical ME research through the MRC from 2003-2008 averaged less than £0.06 million. Prior to 2003 it was virtually nil (Hansard, HL Deb, 5 November 2002, c95W). The MRC’s gross research expenditure for 2009/10 was £758.2 million.

External links to articles about ME/CFS research

HOME · READ · BUY · ABOUT · REVIEWS · CONTACT · F-TEST · MORALITY TEST
AFTERWORD · MISCELLANEA