Wednesday, 24 February 2010
Tuesday, 23 February 2010
Friday, 19 February 2010
Thursday, 18 February 2010
Wednesday, 17 February 2010
Monday, 15 February 2010
Saturday, 13 February 2010
Friday, 12 February 2010
Thursday, 11 February 2010
I would like to register my strong interest in the issues which affect the 250,000 people with M.E in the
Voters in our area include a significant number who have M.E. or are their close relatives, carers and friends. We all want to see genuine recognition of the reality of this chronic fluctuating illness and an end to the inequalities we face in healthcare, welfare, research, education, employment and social care. Our carers need your support, too.
A copy of our Election Manifesto for M.E. should be attached. If it isn’t you can find it on the home page of two national charities, Action for M.E. and AYME, at www.afme.org.uk and www.ayme.org.uk
Wednesday, 10 February 2010
Saturday, 6 February 2010
The Group on Scientific Research into Myalgic Encephalomyelitis (ME) today releases its Inquiry Report “Inquiry into the status of CFS/ME and research into causes and treatment”. The report also known as the Gibson Inquiry has been ongoing for almost a year.
The Group is an offshoot of the All Party Parliamentary Group on ME and the members are as follows
Dr Ian Gibson MP (Chair)
Dr Richard Taylor MP (Vice-Chair)
Ms Ann Cryer MP (Secretary)
Rt Hon Michael Meacher MP
Dr Des Turner MP
Mr David Taylor MP
The Countess of Mar
Over the past year, the Inquiry has received written submission of evidence from medical experts, scientists, patients and patient groups across the UK and internationally. The Inquiry also held 5 oral hearings details of which are on the website www.erythos.com/gibsonenquiry.
The Group undertook this Inquiry after meeting with patient groups in 2005. CFS/ME is arguably one of the most contentious illnesses in medicine today. Even the name is a point of contention. Patient Groups refer to themselves as the ‘ME Community’ and consider CFS to be a term invented by psychiatrists who do not believe their condition exists. Meanwhile the situation in the UK is that due to a lack of research there are only symptomatic treatments available and indeed these have proved useful in some controlled trials.
It is treated with Cognitive Behavioural Therapy (CBT), Pacing, where the patient paces their energy and Graded Exercise Therapy (GET). These treatments are useful to people with a number of long term debilitating illnesses but are usually prescribed as well as medical treatment not instead of.
The Gibson Inquiry argues that we must invest massively in research into biomedical models of this illness. It is still unclear whether CFS/ME is one illness with a spectrum of severity or whether it is two separate illnesses. The most severely affected are least affected by the existing symptomatic treatments. And indeed many of the most severely affected find GET massively worsens their condition. Researching the possibility of sub groups is essential so sufferers can get the best treatment.
One problem with investigating CFS/ME is that the ‘Oxford Criteria’, the guideline for selecting patients for research trials, is very vague and focuses on fatigue rather than the numerous other symptoms of CFS/ME. As such, the knowledge we do have of the illness may have been gleaned from people who did not genuinely have the condition.
NICE has just finished consulting on their draft guidelines for treating CFS/ME. These guidelines have been widely criticised by patient groups and by the APPG on ME. Chair Des Turner described them in a meeting last week as ‘not fit for man nor beast’ Dr Ian Gibson MP of the Inquiry described them as ‘useless’.
ME patient groups have questioned the independence of reviewers in previous Inquiries and believe that the psychosocial school has received an unfair historical advantage in term of funding for research.
The Inquiry calls on the government to rectify this historical bias toward a psychological model and commission a genuinely independent panel of medical experts consisting of virologists, immunologists, geneticists, biochemists etc who can asses the international and UK evidence objectively.
The inquiry also calls on the MRC to encourage research projects into a biomedical model.
The government invested £8.5 million in treatment centres around the UK, these centres should also be used a for research programmes. The UK is supposed to be currently focusing efforts on science technology and innovation. However the UK is falling behind the rest of the world when it comes to CFS/ME and it is the patients in the UK who are paying the price.
There is also a benefits issue. While the illness remains undefined and perceived by many as psychological, patients find it almost impossible to receive higher rate DLA despite in many cases being severely incapacitated, house bound and in need of 24 hour care.
Dr Ian Gibson MP Chair of the Inquiry says
“At last there is an Inquiry which identifies the seriousness of CFS/ME. For too long the patient voice has been left out of the debate. I hope that our Inquiry will highlight the difficult issues surrounding this illness and the urgent need further research. There is a wealth of published and evidence based research on this subject, some in the UK but mostly internationally. Canada and the US are leaving us way behind on this issue. We are a Group on ME and even in our group there has been conflicting opinions on the evidence. One thing is sure, we have a fantastic opportunity here with our Inquiry and the new NICE guideline to really begin to recognise this illness for what it is to look for causes and new treatments and to really build consensus amongst doctors and patient groups”
Friday, 5 February 2010
Wednesday, 3 February 2010
Well, for some time I’ve been wanting to post more about the M.E. side of my life – how it affects me and others, what I’m learning about it, what the condition is and how attempts to find out are progressing. However, this isn’t a journey I want to force my friends to join. Hence this place, Wood of Thorns. Enter only if you wish.
Why is it called ‘Wood of Thorns’?
As you likely guessed from the picture, the title references the Sleeping Beauty tales – in particular the huge thorn hedge that grew up around the cursed castle. Not, I hasten to add because I have ever been called a ‘Beauty’ but because I feel my illness has put a wall between me and the world every bit as tangled and high as Briar Rose’s. Being struck with M.E. really does often feel like being ‘cursed' – one day I was enjoying a perfectly normal life, the next poof! it vanished, stolen as if by some wicked fairy.
Trying to manage and learn about the condition often feels very much like trying to hack my way through a tangled, thorny mess too. Especially with the blunt sword that is my brain these days.
And of course, I do sleep a lot.
What this place is
A probably-messy mixture of classroom, scrapbook and diary.
I’m trying hard to inform myself about my condition (after hiding my head in the sand failed to make it go away). Some of what I’m learning is making me sad, angry or scared and I find being able to share those things helps. As a non-scientist, I’m struggling with a lot of the things I try to read – my poor husband is getting used to anguished howls of ‘Cytokine? WTF is a cytokine?? How is anyone supposed to read this stuff?’ from my room. Here I can keep all my links and things in one place, and beg for help when my brain really won’t cope.
It’s also my way of keeping the time I spend reading and thinking about my condition within boundaries. It would be easy to fall into the trap of reading and thinking about little else and become the most boring, miserable person on earth.
What this place isn’t
It’s not a pity party. Though there will doubtless be some days when I do come on and howl.
It’s not me defining myself by my illness or feeling important because I have it. I don’t do ‘sick-chic’.
And, for the Wessely school, neither is it me indulging my bizarre ‘inappropriate illness beliefs’. Do, please, get a clue.
Why is it so...pink?
Ask Oliver Murgatroyd, the helpful ginger cat who stamped on the keyboard as I selected a template.