Transcript of Commons Adjournment Debate on ME

Liberal Democrat MP Annette Brooke led an adjournment debate on ME on 23 February 2010.

Transcript here including response from Gillian Merron (Minister of State (Public Health), Department of Health; Lincoln, Labour)

or watch the debate here

Boy, I wish this lady was my MP! It was depressing to see only about three other MPs felt this worth turning up for - all the more reason to publicise that it happened.

DANCING WITH THE SANDMAN: Defeated ? Not this carer.

DANCING WITH THE SANDMAN: Defeated ? Not this carer.

At least we have Malcolm Hooper

Nicky's Itchy Feet blog

THE NICEGUIDELINES BLOG: Psychiatric stranglehold at the expense of patients

THE NICEGUIDELINES BLOG: Psychiatric stranglehold at the expense of patients

Oh yes, Mr Gervais, you are fucking hilarious. Not.

Too angry to post properly today, so I will just say that

Ricky Gervais is an ignorant fucking twat

Please, please, never buy a ticket to one of his shows, or one of his dvds, or books, or anything. Ever again.

And please watch the video in the link.

Edit - and here's a description by someone with M.E. who was actually in the audience.

Sleepydust and spoons

Today my spoons are low so I'm settling for posting a link to

The Sleepydust Video

If you ever want to show someone a video that conveys what ME means to those who have it, this one does it beautifully.

Gettin' Manifestin' - Commitment 4

Focus today on children and young people with ME.

There is a general perception (well cultivated by certain people!) that ME strikes in the main middle-aged women. Naturally, there is a silent 'hysterical' in there between the 'middle-aged' and the 'women'! Not so - it is well documented that ME can strike any gender and age group - in some cases children as young as two. The Association of Young People with ME (or AYME, pron. 'aim') is a charity especially for young people and children with ME and of course their carers.

Parents/carers of children with ME face the particularly horrible possibility of being accused of 'colluding in their child's false illness belief' - effectively of helping them pretend to be ill. Or even the label of Munchausen Syndrome By Proxy, thoroughly discredited though that label should be by now after Sir Roy Meadows' disgrace.

If they refuse to accept that their child is mentally ill, they may find their child removed and sectioned under the Mental Health Act - as happened to Sophia Mirza (additional article here) whose cause of death was listed as CFS in 2006 and Ean Proctor (interviewed here in a video I have to warn you may find distressing but do beg you to watch) - who was removed from his parents at age 12 for five months - and whose 'treatment' by mental health staff included being thrown into the deep end of a swimming pool without float aids to try to prove he was faking paralysis (unsurprisingly, he sank and had to be pulled out). One can only imagine his terror, and the frantic distress of his family - whose 'crime' was to insist their son was not faking illness.

If I sound grim, that's because this makes me feel grim - grim and speechlessly angry. This is the twenty-first century - how can we still be permitting our asylums to be used as places to hide, even punish, the inconveniently ill? How can we allow psychiatric treatment (such as CBT) to be forced on children by threatening parents who refuse it with removal of their children? How can doctors tell the parents/carers of those with this vile illness that it is their fault their loved one is so ill?

4: Education

Guarantee that all children, young people and adults with M.E. who are well enough have access to education and receive appropriate support to fulfil their potential.

Key facts:

M.E. has been reliably diagnosed in children as young as two. The prevalence may be up to 4.6% in children, much higher than has been generally recognised.

M.E. was found to be the most significant cause of long term school absence among 885 individual sickness records received in six local education authorities (51%), followed by:

cancer and leukaemia (23%), general medical or surgical conditions (13%), musculoskeletal problems (12%), psychiatric disturbance and virus infections (5% each).

Our expectations:

Schools will have a statutory, rather than the current voluntary, responsibility to support the health and well-being of children with medical needs.

All schools will produce and implement medical condition policies, covering M.E. as part of

their duty to promote pupil wellbeing.

Ofsted inspections will include support for key health conditions including M.E. specifically.

The numbers of children affected by M.E. experiencing long term school absence will be

investigated.

Can we look at life, too, please?

Breaking into the Manifesto entries to repost an entry from Nicky's blog that covers something I feel is important and at the same time quite hard to articulate without seeming heartless: that while it is right and proper that in the aftermath of Lynn Gilderdale's death the issue of assisted suicide should arise, it has been focussed on in the press to such an extent that the illness which led Lynn to want to leave life, and the question of why she was not helped by the UK medical system while alive, are close to being rendered as invisible as ever.

Nicky writes:

Some journalists have taken advantage of the recent Kay Gilderdale trial in the UK to discuss assisted suicide. See, for example, this piece from the Guardian by Madeleine Bunting:http://www.guardian.co.uk/commentisfree/2010/feb/08/assisted-dying-danger-vulnerable

I don't read the Guardian, but I do read the Guardian Weekly, where the same article was published under the heading "It's hard to fathom the reality of death". This is my letter to the editor in response:

Dear Editor:

Madeleine Bunting neatly side-steps the real issues emanating from the Kay Gilderdale trial (It's hard to fathom the reality of death, 12 February). This trial may have shown "the English legal system working at its best", however Lynn Gilderdale's many years of suffering with myalgic encephalomyelitis (classified by the WHO - ICD-10 G93.3 - as a neurological illness) have patently shown the British health service (NHS), the medical research council (MRC), and British investigative journalists working at their worst. Ms. Bunting may have difficulty fathoming the reality of death. I have difficulty fathoming the reality of life with a disease that many doctors, researchers, and members of government deem unworthy of their full attention. Why is no one questioning how the British medical system let down this young woman and continues to let down people with ME? No one with ME should feel so abandoned and without hope that they would want to take their own life - this is the real failure at issue here.

Gettin' Manifestin' - Commitment 3

Research today, and already I see an addition I'd like to have seen in this particular manifesto commitment. To the first sentence below I would simply like the words 'and acted upon' inserted at the end of the sentence, so that the commitment would read:

See that robust scientific evidence of the biology of this disease is obtained and disseminated across all government departments and acted upon. (my addition in itals)

It seems to me that the problem right now is not that information isn't out there - it is that it is being persistently and systematically ignored because it suits certain agendas for this to be so.

In his witness statement to the NICE guidelines judicial review, Dr Ian Gibson reminded us of one very basic fact:

"We should not forget that ME patients have a legitimate right to aspire to a cure. Far too many doctors appear to have lost sight of that objective."

When being bombarded with information from all sides telling you you are crazy, malingering or simply attention-seeking, it can be easy to lose sight of that aspirational right as a patient too. When we ask for decent research into our condition, we aren't asking for the moon on a stick with sprinkles! Wanting to know why you are sick, and how you might be made better, has never seemed to me an indication of insanity. Isn't it just what any sick person wants?

3: Research

See that robust scientific evidence of the biology of this disease is obtained and disseminated across all government departments.

Key facts:

In 2006 the Gibson Inquiry into the progress of scientific research on M.E. found that the issues outlined in 2002, in a Report to the Chief Medical Officer, had not been addressed. It said:

“Although some interesting biomedical research has been done in the UK precedence has been given to psychological research and definitions. The UK should take this opportunity to lead the way in encouraging biomedical research into the potential causes of CFS/M.E. Further research is the single most important area in this field.”

In 2008 the MRC set up a new Research Expert Group under the leadership of Professor Steven Holgate, Southampton University, to review current research, identify research opportunities and encourage new research to understand the causes of CFS/ME.

Our expectations:

Substantial resources will be committed to identify the cause of this marginalised condition once and for all.

The Medical Research Council will update its highlight notice on M.E., in response to the findings of the Gibson Inquiry which said that more funding should be allocated to “research into potential causes, which might lead to better diagnostic tests...Investigating potential sub-groups must be a strong priority.”

Identify whether advice can be given to those with significant infections in order to prevent them from developing M.E. This should include the possibility of establishing testing and treatment for Xenotropic Murine Leukemia Retrovirus (XMRV), herpes and enteroviruses and other infections which may be found in people with M.E.

Clinical trials of medications which have been found to be helpful to some people with M.E.

M.E. will be designated as a reportable health condition to enable the robust collection of data on the number of children, adults and young people with M.E. in the UK, the degrees of severity experienced by different groups, demographic data, and any family history of the condition.

Wild Roses

A break from the manifesto for valentine's day. I want to say a few words about the people who venture within my thorny limits and how much they make this new and reduced life bearable.

Top of the list: my husband Anthony. M.E. is very much the 'third person' in our marriage. It affects everything we do...and can't do. It broke some of our dreams. It changed and narrowed our future. And yet, Reader, he married me. He has adjusted to being sole bread winner, care-giver and owner of a much fatter wife than expected...and has done it all without once making me feel a burden or in his debt. He astonishes me every day and I am privileged to share my life with him.

My family: my mum and dad, in their 70s for goodness' sake, who come down and ask if they can help me clean house, or what they can do to make things easier. In a normal life, things would be the other way round and I would be taking care of them at this time in our lives. I love them for never making me feel crazy, or a disappointment. My brother and sister-in-law who patiently answer health questions (both are GPs) when I am too worried about appearing as an over-anxious patient to approach my own doctor (lovely though he is). My nieces and nephew, who had to understand very young why Aunty Jane could no longer romp so very much or pick them up and swing them about - and who have curled up with me for a nap when I faded completely.

My lovely in-laws, who are quite used to me sleeping through half our visits and simply act as if this is nothing unusual.

My doctor, who makes no fuss, doesn't treat me like a malade imaginaire and is always willing to give me a telephone consultation when travelling is difficult, and admit my husband to appointments in case I can't remember what gets said. And who never treats my depression and M.E. as interchangeable. I'm so lucky to have him.

My cats. Who light up my life. They don't expect intellectual conversation, and the longer I spend in bed the happier they are!

My friends. Everyone who gets M.E. loses touch with many friends and learns to treasure the ones who go the extra mile to keep the friendship going. One of my friends makes the time to ring me every week, just for a chat. As if we were having a casual coffee together at the end of the working week. She understands that just talking on the phone can be tiring and never makes me feel bad if I have to end the call abruptly. Sometimes hers will be the only human voice besides Anthony's that I have heard that week. One friend works locally and visits for overnight stays - and never complains when we always feed him effortless pizza, or I disappear to bed early. One involves me in some of her sewing projects, even though all I'm good for these days is tacking and hemming - without her, this would be a creative part of my life that had vanished. One friend involved me in her wedding plans, by finding something I could do in small doses beforehand. Others stay in ongoing, casual contact via email, Facebook and the like - and give me the blessing of normal daily contact.

I doubt these people have any idea how much they brighten my life.

They are the roses in my wood of thorns.

Gettin' Manifestin' - Commitment 2

Considered changing the title to 'Manifesto Allegretto' but realised that would betray (1) my age and (2) my sad on-going fondness for small fuzzy creatures who live on Wimbledon Common...

People with M.E. have great difficulty accessing benefits. Those who persevere through the appeals process are almost always granted them at final appeal. By then, many have made themselves iller in the struggle. I've heard of people deliberately sent to non-local assessment centres, where they are promptly told 'you managed to get here so you can't be that sick'.

Yesterday, I read a post from a father whose wheelchair-bound daughter was deemed 'not unable or virtually unable to walk' in a letter declining benefit. That bears repeating I think. A girl who holds onto furniture to walk inside the house, and can only travel outside the house in a wheelchair is not unable or virtually unable to walk. Really? In whose looking-glass land? And trust me - almost every day brings some variant of that story.

It would appear 'the system' relies on us being too sick to fight for what is ours by right. In my case, that was true. Anthony and I decided that we would not spend my limited energy on a fight. We would be better off financially if I did, but the experience of others suggested I'd also get a lot sicker in the process, and the energy used on fighting would be energy I couldn't spend making our life together as normal as possible. I am very, very lucky to have been in a position to make such a decision. Too many are not and are as I write worsening their illness fighting a battle they should never have to be fighting in the first place.

2: Welfare

Bring about a fundamental shift in attitude in welfare policy and practice towards chronic fluctuating illnesses.

Key facts:

Because M.E. is a chronic fluctuating illness, patients who are too ill to work (and their

carers) are exceptionally vulnerable within the welfare benefits system. Their health suffers and

too many experience a relapse in the struggle to access, claim and retain the benefits they need.

Our surveys consistently show that Department for Work and Pensions (DWP) and Jobcentre Plus staff – including doctors and assessors in subcontracted medical services – do not understand the fluctuating complexities of M.E.

The problem is illustrated by the high number of awards made at the appeal stage after rejection of the first claim.

Our expectations:

Sufficient safeguards will be put in place to protect people who are genuinely unable to work from being pressurised into unsuitable work or work-related activity prematurely, when a return to such activity could be detrimental to their health.

Introduction of up-to-date and accurate M.E. training within local authority Social Services

departments, the Department for Work and Pensions (DWP), Jobcentre Plus and subcontracted

medical services.

A full review of the guidance on M.E. for new and existing assessors and other staff in the Department for Work and Pensions

Gettin' Manifestin' - Commitment 1

As I posted yesterday, I'm going to post the commitments looked for by the AfME 2010 Manifesto in full. You'll find the first one below - I've tried to add some useful links to give it context.

1: Health

Put an end to inequalities in health provision faced by adults, young people and children with M.E.

Key facts:

On 6 May 2009, Lord Darzi told the House of Lords: “It is the responsibility of Strategic Health Authorities to ensure that services are available – and sufficiently funded and staffed with appropriately trained staff – to meet the health and social care needs of those of their local population diagnosed with CFS/M.E.”

On 2 December 2009 the All Party Parliamentary Group on M.E. presented its Inquiry report on NHS services for M.E. to the Minister of State for Health Services. The report described

evidence of gross discrepancies in the quality of care provided by Primary Care Trusts for patients with M.E. and found the variations in availability and access to services unacceptable.

Only 2% of respondents to Action for M.E. and AYME’s most recent health survey felt their GP was well informed about M.E.

NICE published its guideline on the diagnosis and management of CFS/M.E. in 2007. Concerns have been raised that recommended treatments such as graded exercise therapy (GET) have harmed many patients.

Our expectations:

M.E. will be included in all pre- and post-registration training of healthcare professionals.

Increased funding to primary care trusts, ring-fenced to enable access to specialist services for all patients, including domiciliary visits for the severely affected.

The review of the National Institute for Health and Clinical Excellence (NICE) guidance on chronic fatigue syndrome/ myalgic encephalomyelitis will be properly informed by patient reported outcomes and the widest possible medical consultation.

Every GP will be enabled to make a timely diagnosis and refer to an appropriate specialist, provide treatment and management advice tailored to the specific symptoms the person has, and a long-term condition care plan.

The role of alternative therapies that patients have reported as helpful in alleviating the symptoms of M.E. will be incorporated into the NHS.

Care of patients with ME will be included in the Quality and Outcomes Framework for General Practice.

Gettin' manifestin'

Action for M.E. has issued its 2010 election manifesto for M.E.

Its aims are summarised as follows, but it's well worth a look at the whole document. In fact, I'll post an aim a day for a week!

Summary:

1. Put an end to inequalities in health provision faced by adults, young people and children with M.E.

2. Bring about a fundamental shift in attitude in welfare policy and practice towards chronic fluctuating illnesses.

3. See that robust scientific evidence of the biology of this disease is obtained and disseminated across all government departments.

4. Guarantee that all children, young people and adults with M.E. who are well enough have access to education and receive appropriate support to fulfil their potential.

5. Ensure that all young people and adults with M.E. who are well enough have access to employment and will receive appropriate support to fulfil their potential.

6. See that all adults, young people, and children with M.E. receive optimal respite care, support and information.

7. Make sure that all carers of adults, young people and children with M.E. receive optimal support and information.

AFME have also put together a campaign letter that can be sent with a copy of the manifesto to local politicians, press, etc. If you have time to send this to your local candidates, even by email, please do. If you don't have M.E., please consider still sending this letter or your own variant on it. Only when enough concern is expressed about our condition by non-sufferers will we break through the barrier of 'M.E. patients and campaigners are crazy people'.

Dear____________________________________

I would like to register my strong interest in the issues which affect the 250,000 people with M.E in the UK, and to ask what YOUR commitment will be to tackling their problems.

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

Thank you.

____________________________________

Signed

We think you ought to know, you're feeling very depressed

By coincidence, I'd been planning to talk a little about the 'D' word here when I ran across Andrea Pring's copy of email sent to the Telegraph which says a lot of what I would have wanted to.

I want to talk about depression and M.E. from a point of view I don't see voiced very often - the experience of people like myself who already suffered depression, and were undergoing treatment for it, and then later developed M.E. in addition. I can hear the psychiatric lobby already. "Aha, you see that proves it! She had one mental illness, so now anything she gets must be a mental condition! Score!" or the more insidious "So M.E. is just the latest form your depression has taken." And, guys, I'd just like to say - bullshit.

I was diagnosed with depression years before M.E. came along. It did not 'morph' into M.E. - it remains firmly in residence alongside it, the co-habitees from hell. I am not depressed 'because I have M.E.' - though it does make fighting the depression harder. I take anti-depressants because I am a depressive; was one before M.E., probably will be whether the M.E. goes away or not. Not because M.E. is a mental illness. OK?

It seems confusion between the two conditions arises because tiredness is a feature of both. But in my experience, the kind of tiredness is very different.

The tiredness and sleep disruption I associate with depression goes like this: I can't face getting up because the world is so black, what's the point, something awful will just happen and I don't have the mental strength to cope. Coupled with at the end of the day forcing myself to stay awake way into the small hours because, hey, I survived that day and until I give in and sleep, the next scary day can't begin.

Where as the tiredness I associate with M.E. is mental and very, very physical - sitting down for a rest halfway upstairs, having my arms ache from holding a book to read, 'I'd love to get up but my limbs feel like they have toothache, I'm dizzy, and the light hurts my eyes'. And then there is the hallmark of M.E. - delayed impact of 'overexerting', where you overexert on Monday and pay for it with illness on Wednesday.

When suffering from depression alone, I could also still experience 'good tiredness'. You know, the good-achey-buzz and satisfied feeling that comes after a spirit-lifting walk, or a session of gardening, even a spring clean! Physical exercise was one of my principal and most effective weapons against the Black Dog. God I miss it now. Because once M.E. came along, 'good tired' became a thing of the past. Exercise now = feeling bad. M.E. somehow sucks the 'up' out of exercise. It doesn't just make me feel tired. It makes me feel ill.

So - with depression, exercise can make your body and mind feel better. With M.E., it can (and usually does) make you sicker. Depression did not stop me walking 100km across Iceland for charity. M.E. stops me walking up the hill to the nearest bus stop.

When the (very supportive) doctor who diagnosed me with M.E. (and yes, she did mention it first - I don't know where the public impression of hordes of crazies demanding that they have M.E. comes from) cast about for things she could do to help me, it turned out that her only realistically available resources were a drug (amitriptyline) and CBT (Cognitive Behavioural Therapy). She agreed that seeing a dietician might well be beneficial, but that 'I could forget it if I wasn't diabetic, the waiting lists were years long'.

Amitriptylene was prescribed to help with rotten sleep patterns and myalgia. But of course it goes on your record as an anti-depressant. The doctor was very clear to me that she did not consider my condition a mental illness, but CBT was the only resource she could readily access for me. It was to help me manage the impact of the illness on my life (just as it is used in that way to help sufferers of other chronic conditions - as a supplementary treatment), not 'cure' it. But what goes on the record? Yep - treatment at a psychiatric out-patient centre. This, my dears, is how we get the label.

One of the accusations leveled at those of us who would like M.E. researched as the neurological illness WHO says it is rather than labelled a psychological problem, is that we 'just don't want to accept the stigma of being mentally ill'. So let's be crystal. I don't have any problem with 'admitting' I have a mental illness. I've had one for years and years; it is called depression. I do have a big problem with a physical illness being described as a mental one, because I have experienced the difference. Especially when it appears to be done with some fairly hefty ulterior motives.

Chronic pain/fatigue causes work incapacity - petition

Gosh, two posts in one day. This is just a very quick one to ask you to sign the petition I was just pointed at and, if you feel able, to ask your friends to sign it too.

Petition to recognise specifically that chronic pain and chronic fatigue can cause incapacity to work.

Inquiring Minds

I have added The Gibson Inquiry to the links on this page. I'm going to be working my way slowly through it this week and will post as I go along. (Note: often referred to in the M.E. community as 'the Gibson Report' but be aware that this can cause confusion with the Gibson report into the Omagh bombing.)

Below I quote the Press Release that announced the Inquiry's conclusion in 2006. In full - don't worry, it's not all that long! - because it sums up the current situation of M.E. in our country very well. Which is sad, really, because it aimed to change it.

In 2006, this report called for an end to the psychosocial school's dominance over the treatment and diagnosis of M.E. in the UK, and urged investment also be made in biomedical research. It hasn't happened. It raised concerns over the connection/vested interest of several 'M.E. experts' from the psychiatric 'faction' due to their direct links with insurance companies, benefits agencies and drug companies who produce anti-depressants. It raised very serious concerns over GET (Graded Exercise Therapy). Apparently, the government shares none of these concerns, because I haven't been able to find that anything at all has changed since the report (witness the rush to sideline the XMRV findings in America, which I'll get to in a whole 'nother post).

With a general election looming at us, I'll be sending copies of the Gibson Inquiry's report to all our local candidates and asking how their parties plan to act on its findings...

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

Lord Turnberg

The Countess of Mar

Baroness Cumberlege

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”

Repeat after me: I am living in the Now...

An M.E. sufferer named Leanne posted her story on the Action for M.E. facebook site today. In the last paragraph, she says:

" I used to want to get back to the person I was before I became ill, but I have let that go now. I want to explore who I am now."

That is where I too, finally, am. I don't have my old life, and I don't want to spend all my present life pining for it or making myself ill trying to have it back. I refuse to consider this a 'defeat'. My 'now' life is pretty damn good, and I'm certainly not done exploring!

One of the challenges I have run into the last few years is - how do you adjust to small goals, feel proud of small achievements, without becoming, well, small? And how do you do it without at the same time writing small problems and bad things up large too, leading to endless tempests in teacups?

Balance, says my good angel. A good scenery-chewing over trifles never hurt anyone, says my bad.

What am I doing here??

Why did I decide to make a blog devoted to the M.E. side of my life when I already hang out on Facebook and LiveJournal?

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.