On the 16th July 2007 I completed a two week 190 mile long walk across England, from Robin Hood’s Bay in the east across North Yorkshire and the Lake District, to St Bees Head in Cumbria.  It was a variation on the classic Wainwright route and I walked mostly on my tod, carrying all my things on my back, 12-15mls a day for 2 weeks.  This was no walk-in-the-park, not surpisingly I had sore feet and plenty of aches and pains in the legs! But all the generous sponsorship from everyone really did focus the mind on plodding on,  and there were some very long plodding days! Many in the rain (trust me to pick this summer!).  I was constantly reminded that I'm not getting any younger and the arthritic twinging-screws are very much part of my life. But my hip replacements gave me good service as they usually do, so I just kept taking the pills and gave it my best shot!   Seriously though, without all the medical help I have received since being diagnosed with A.S. (arthritis) as a teenager, I wouldn't be able to walk 190 yds let alone 190 miles. Research into arthritic complaints, like almost all diseases, has produced treatments which have radically improved the lives of sufferers like me.

    Contrast that with the plight of M.E. sufferers (M.E. is also known as ‘Chronic Fatigue Syndrome’ – CFS). Because of a worrying lack of biomedical research due to a lack of funding there is still no real medical treatment and no cure.  Whilst some sufferers benefit from ‘pacing’ and ‘CBT’ (changing how you approach activity to minimise exhaustion), many are severely ill for years, with typically less than 1 in 10 making a full recovery.

   Our daughter Sally has M.E., her illness is a classic case.  It came on suddenly over two days with flu-like symptoms and the effect was simply devastating.  From being a 100% fit 26-year-old, full of energy and working hard, within two days she could hardly walk or even think.  That was October 2005, and despite some improvement, she has been off-sick from work since then (only now starting to manage a few hours in the office each week, a fraction of what she used to do), and is sometimes too ill to leave the house. She has to ration all activity, even socialising, and has lost the sports she loved (like rock-climbing). . Her physical stamina is typically less than 5% of normal (e.g. walking ½ mile is more exhausting than a 10 or even 20 mile walk before she was ill). And there a many poor sufferers significantly worse than her.

 The photo above is of Sally and I on our Everest base camp trek one year before she went down with M.E.  Sadly, what a contrast.  Nowadays she often can't even walk up the stairs. Her symptoms are typical of ME/CFS sufferers, mainly extreme exhaustion (particularly after activity). But it is not a ‘normal’ tired feeling we all experience after a busy day or long walk: it is a terrible ‘ill’ feeling, worse than bad flu.  Also muscle pain & weakness, inability to concentrate (‘foggy brain’), headaches, insomnia, noise/light sensitivities and more.  No wonder sufferers are offended by the idea that they are just ‘tired’!

    Unfortunately, M.E. is all too common, around 1 in 200 people suffer from it, more than many more well-known serious conditions.  In fact, we have five friends who have it.  Some have been lucky and improved a lot over the years, others still have it 15 years later.  A minority of sufferers spend years in bed in a dark room because sunlight is too painful and they can't stand the noise of someone talking.

   A tragedy of M.E. is that although it is recognised by the World Health Organisation as a Neurological disease, much of the medical establishment refuse to accept this, and brush it aside as a psychological disorder. The MRC indicates investigating M.E. should be a priority and is funding a survey into the effect of self-pacing,  but leaves it to the charities to fund serious bio-medical investigation into its root cause.  This is disgraceful because there is now much scientific evidence that M.E. is a complex physical disorder of the nervous/immune systems, possibly with viral cause.  Very little help is available on the NHS and sufferers & their carers are usually left to cope on their own whilst their lives fall apart.

  So my mission, like that of ME Research UK (www.meresearch.org.uk) and other charities like Invest in M.E. (www.investinme.org)  and Action for M.E. (www.afme.org.uk) , is to raise awareness in official medical bodies who control government funding  (like the Medical Research Council) that M.E. sufferers deserve urgent help.  They must not be brushed under the carpet and forgotten.  The cost to the economy (some estimate £6b per year), let alone the devastating effect on the sufferers and their families, is enormous.   

   M.E. can strike out of the blue to anyone at anytime.   Scary. 

   So PLEASE HELP these charities, and just as importantly talk to everyone you know, especially in the media, politics and the medical profession, to GET SOME RESEARCH UNDERWAY URGENTLY!

   Please take a couple of moments to sign this petition for a change in government attitude:-  http://petitions.pm.gov.uk/ME-is-real/

   Please check out these links for interesting info:-  http://www.afme.org.uk/res/img/resources/All%20about%20ME.pdf
http://www.meassociation.org.uk/content/view/114