2. Wham 3. Risk. 4. Witchcraft

I grew up in Barnton Park down the road from Sarah Boyack, now SMP, in Edinburgh. Sarah, I'm sure, will join me in remembering a childhood spent riding bikes with her friends and taking long walks exploring the not-yet-developed fields that surrounded the estate and to Cramond, where the beach was sandy, not strewn with grasses as now, and the river Almond was a great attraction for walking precariously on stepping stones and where we could sail in a rickety ferry to Dalmeny to walk for miles. All in all, a very active childhood. In my twenties I continued to be active, canoeing, as I've written about, at Craiglockhart Sport Centre and down Scottish rivers and, rather less successfully, in the canoe polo squad. Then I got ME/CFS.

That was in the mid 80s. I know now it is called ME/CFS because i was given the diagnosis over 20 years later in 2009 by an infectious diseases Consultant then again in 2013 by a Neurologist.

Over the last couple of months I've started reading about ME and have learnt how people generally, but mostly the medical profession view the illness. I've taken it all on board with surprise and at times a stirring of anger. Yesterday I opened a document with a quote that stirred me to more than anger. I tend not to be an angry person but to think logically about what can be done to sort a situation. But I am struck by how utterly hopeless people with ME feel. Reading in the space of a few weeks about 30+ years of misdiagnosis, neglect and in a few cases what seems nothing less than abuse I am left with a sense of hopelessness.

However, I will stay true to myself and not start to feel hopeless or angry. What is there to do to sort the situ? What in fact was the quote that made me so angry?

Sir Simon Wessely, Professor of Psychiatry, has promoted for decades that people with ME have a false illness belief (i.e. no illness at all) and therefore must be treated by psychological support and encouraged to increase exercise, in a gradual way, but it's a must to increase exercise (many patients report this has made them worse and it is implicated in at least one death). He has fed his belief into the DWP so denying people with ME benefits and pensions and generally sustaining the Yuppie Flu idea from the 80s to portray people with ME ... me in fact, as a malingerer (is this why the Occ. health doctor told me I had no rights?)

The anger-inducing quote* from Sir Wessely was ...

"In a previous era, spirits and demons oppressed us. Although they have been replaced by our contemporary concern about invisible viruses, chemicals and toxins, the mechanisms of contagious fear remain the same...To the majority of observers, including most professionals, these symptoms are indeed all in the mind."

.... and I realise if I had lived in the 16th Century I'd have been burned at the stake as a witch!

THE QUOTE on Cort Johnson's excellent forum

RISK

I'm not averse to a bit of risk in my life. Canoeing down the rapids at Grandtully was at times hair raising, swinging on the branch of a tree (just before my fortieth birthday!) was risky, and now I realise foolish, as I badly injured both elbows, but they were risks worth taking.

So, I'm pondering risk. Someone called Annette has asked a question to the ME Association FB page about why it is taking so long for treatments to become available when trials like the Norwegian Rituximab one are showing such good results; results that seem to me unprecedented in ME history and leave me wishing I was Norwegian so I could volunteer and take part in trials. Annette mentions risks asking why patients can't take their own risks with treatments rather than waiting for trials to be completed.

My understanding of the Rituximab trials can be explained simply as ... The body produces too many B cells in the lymphatic system ... the B cells fight against infections ... if there are too many B cells, the extra ones attack the body when there is no further infection to fight. Rituximab reduces the number of B cells. For a fuller, more scientific and knowledgable explanation see the link below.

I have in my mind a set of scales. The nice old fashions type where you balance solid heavy discs on one side and perhaps ingredients on the other. On one side I weigh the risk of treatment with Rituximab, which I understand also involves steroids and the risk of side effects that these bring; on the other I weigh the risk of continuing as I am. The risk of ... the loss of a thirty year career, loss of self esteem that comes from doing a job I love and am good at, loss of essential mortgage-paying earnings (loss of house, ability to pay bills and feed the family), loss of security, increasingly the loss of control over my own life. More important is the risk of ... missing out on, not the big milestones of my girls' lives but just the mundane everyday business of living, risking sitting on the sidelines as they fast become independent young adults.

I would volunteer in a flash ... not for any treatment, but certainly for a treatment that has reported such good initial outcomes as the Rituximab trial. I understand ME symptoms may be caused by different conditions in different people but like me, many with ME have repeatedly swollen, or if not swollen then painful glands, recurring infections of throat ears, urinary tract, and it makes sense that something is going on with the immune system ... Oh to be Norwegian!

Info re the Rituximab Trial

WHAM

The only rule I remember of canoe-polo is ... when you are holding the ball, someone in the other team can push you into the water. The more skilled player can make a nifty twist of the oars and flip the canoe upright again. I did try, and a very patient teacher allowed me to try repeatedly, but I never mastered this. So, I tended to skulk in defence and avoid holding the ball as much as I could because every time I took possession a large beefy teenager from the other team would appear and push me in, before going on to score a goal.

You might ask, 'Why did I do it?' I have to say quickly that my river canoeing was more adept than my polo skills and I canoed for a couple of years before capsizing into a river. I'm sure, because I'm not a strong swimmer, it was sheer will-power rather than any particular skill that kept me in the canoe. The rapids at Grandtully were a favourite and challenging end to a day on the Tay. I did the polo because the team needed a fifth player and was often one down; they assured me that the team was better off with me as the fifth member than playing with only four, tho' I was never convinced.

I hope this isn't going to sound too cheesy but... my experience of ME is like catching the ball in canoe polo. Here comes the ball ... hey, and down you go. It's unpredictable. You can be in position of attack, go-getting, pushing to the winning line or in defence, trying to avoid the ball but the game, like life, moves quickly and ... wham ... you have the ball and down you go. The all elusive flip is the cure whether it's me trying to cure myself or me believing that one of the researchers will hit on the ... what? What might it be? One cause for ME with one specific cure? 

Unpredictable is the word that a rather scary Occupational Health doctor used to describe me when I ventured to ask if I had any rights as a disab...... 'Rights! Your employer has the right not to have someone as unpredictable as you working for them!'