Hold the press! We have a scoop! One person in London has recovered from chronic fatigue*!
Hold the press! We have a scoop! Several hundred thousand people throughout the UK with ME/CFS are suffering in 'the shadows*', are not being believed, are being ridiculed ... by the UK press, by UK academics and doctors and by UK CFS/ME practitioners.
That, to me is balance.
This is the introduction to my next blog about balanced reporting of ME/CFS in the press. My 500 words will be carefully thought out so it may be tomorrow before it appears.
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In the meantime, today's blog is about the effect on people of living with ME/CFS.
I visited my very dear aunt and uncle yesterday. My uncle is 91 and my aunt is 89. They both dispute this because they feel ... and also look ... years younger. I last saw them in ... August! I've been flattened, not by tiredness but by an exhaustion that defies definition; by recurrent infections; week-long migraines (that have been eased by a change of medication); by sore limbs and joints; by days when I could barely get out of bed. My family listen with dread when I say I'm going to lie down for five minutes ... it usually extends to three or maybe four hours and any plans for the day are squished. When I was little, my sister and I dreaded our mum saying, wait just five minutes ... we started to call it a 'mummy-five-minutes' and we knew it could last for many many more minutes or even hours (often because our mum, an avid reader, was gripped by a book she was reading.) I'm now the mum with the 'mummy-five-minutes' that are spent ... sleeping. (Incidentally, my mum also had a phone-voice! Did anyone else's mum have a phone voice? We had a rather poshly spoken 'aunt, who wasn't really an aunt, and we could always tell when mum was speaking to her on the phone because her voice became plummy.)
I digress ... back to topic... how ME/CFS affects lives. To answer this let's ponder what we would do if a real cure could be found for ME/CFS? I'm looking for one word but it'll take a few more until I reach that word ... I'd be a better support to my sister who's just started chemo after a cancer diagnosis, I'd take the dogs for a walk every day with my children, I'd stop daytime sleeping, I'd visit my aunt and uncle once a week, I'd go back to working full-time to a job I love, then have time for activities in the evening and weekends like most of my colleagues do - joining choirs is the popular one at the moment, which often prompts bursts of singing in the office, I'd ... there's loads more but the word I'm looking for is PREDICTABLE ... I'd make plans and I'd follow them through ... I'd be predictable.
PLEASE MAKE A COMMENT WITH ONE WORD THAT WOULD DESCRIBE WHAT YOU WOULD DO IF A REAL CURE COULD BE FOUND FOR ME/CFS AND, IF YOU WANT, WRITE MORE TO DESCRIBE WHY YOUVE CHOSEN THAT WORD.
.... Oh, and I would put the Christmas tree back in the attic!
5. A Scottish Retuximab Trial.
It's making me angry that I have been likened to someone possessed by spirits and demons (see previous blog.) I am averting my anger by thinking of solutions. My first thought is JK Rowling who is well known for financially supporting MS charities ... and ME is not far from MS ... a consonant apart if nothing else.
I want this blog page to be the equivalent of me standing on the roof of the Scottish parliament with a megaphone, which vertigo - and likely the police - more than ME/CFS would stop me from doing. I'd be shouting about how the UK establishment have shunned and belittled people with ME/CFS for decades and how I think Scotland's academics and doctors are above the cronyism that seems to have perpetuated the belief in the UK of ME/CFS being all-in-the-head and akin to witchcraft of the sixteenth century (you can see that Wessely's quote has really ruffled me!) I'd be shouting about how I hope the day will come when ME/CFS will be recognised as a physical illness such as MS or cancer and that the years of telling people to exercise and think happy thoughts (how the Telegraph recently reported it) will be ridiculed, as doctors would be if they gave cancer patients the same advice in order to shrink tumours.
In the UK, the Psychology approach to treatment is well entrenched and historically has had most of the UK government's ME/CFS funding. But now UK money is being raised for a Rituximab drug trial ... in London! (see link below). Nobody in Scotland will benefit. I would like to take the risk of being part of a trial. I wonder if Scottish MPs could recognise how very desperate Scottish people with ME/CFS are. I wonder if Scottish MPs could support funding for research in Scotland that ties in with the very promising outcomes of the Rituximab trials in Norway.
I'd love to ask Scottish MPs in Holyrood and at Westminster to find out more about ME and how it is devastating people's lives. I wonder if it is known how many people in Scotland are diagnosed with ME/CFS. In the UK it has been quoted as 250,000 for the last three decades, never increasing as more and more people are felled by this crushing condition.
I'd like to ask that ME/CFS practitioners in Scotland take a step away from the PACE trial whose methods have been widely questioned and that has prompted academics and doctors from around the world to write to the Lancet (see link below) asking for data to be released under the FOI act so that results of this much criticised trial can be verified. Only three British doctors joined nearly fifty others to write this letter. A sign that the British establishment is closing ranks?
I'd love to see a Scottish Haematologist join Norwegian colleagues and set up a B-cell/Rituximab research project in Scotland, with Scottish government funding.
I'd love to see Scotland financially supporting biomedical research for ME/CFS in Scotland. Any politicians, haematologists ... charitable fund-givers in Scotland listening?
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