A Liddle bit of M.E. Awareness would go a long way!

‘Pretend disabled’ really ARE sick.

"My New Year’s resolution for 2012 was to become disabled," snorts the less than credible Mr Rod Liddle in today's Sun "newspaper", as we still generously call it, even after all these years.

Many have been hurt, enraged and angry by the ignorant bandwagon-jumping of the notoriously obnoxious hack. Some have counselled "ignore him he'll go away" tactics. Those of us who walk the sickening tightrope of life with neurological M.E. sadly have learnt this kind of attack won't just evaporate. The constant background drip of anti-M.E. jibes, the jokes from the writers of Benidorm and Ricky Gervais, the biopsychosocial psychobabble of such as Wessely, Freud et al, will not go away.

Tolerating in silence may make me feel adjusted, meek and mild. That's OK for myself, as it's my choice. But on behalf of everyone else who is affected by this disability denying counter-narrative, as a Christian, a writer, a compassionate human being, a citizen of a world where disability is a reality but equality and justice are not, I felt I had to say my piece and not let such unbridled ignorance and malevolence go unchallenged.

This is what I wrote as my complaint to the Press Complaints Commission. A bit more M.E. awareness never does any harm, if it's the right kind, so here it is:

-------------------------------------------------------------------------------------------

Please add the clause(s) you believe to have been breached:

Clause 1. Accuracy i) ii) & iii)

Clause 12. Discrimination i)

Liddle's wholly inaccurate, offensive targeting of neurological M.E. (myalgic encephalomyelitis) in this article breaches the Code by inciting disability hate crime and discriminating against a large group of extremely ill patients. Factual journalism is nowhere to be found in his dismissal of M.E. as "nothing too serious" and "one of those newly invented illnesses which make you a bit peaky for decades". Patients have died from M.E. It has been recorded as a cause of death on death certificates e.g. Sophia Mirza.

Had Liddle done the modicum of basic research and not merely been in a ferocious rush to promulgate his vitriolic misinformation aimed at those too ill to retaliate, he might have avoided bringing disgrace on his profession and inciting unwarranted contempt on patients struggling with this lifelong chronic disease (known to be more disabling in its effects at times than AIDS, MS & liver failure).

M.E. has been recognised and classified by the W.H.O. since 1969 and known by other names, in isolation and in large outbreaks for much longer. It is in no way “newly invented”, let alone “fashionable”. Neurological M.E. is so severe and life-changing in its devastation, that not even the most intelligent actor could "pretend" to mimic its measurable effects, including neurological and mitochondrial chemical changes in the body. It might be possible for a scrounger, such as Liddle purports to covet becoming, to feign the vague fatigue symptoms experienced for a few months by some who only experience a limited period of "chronic fatigue," but these people do not have neurological, multi-systemic M.E.

M.E. cannot be reliably diagnosed until a quantifiable, indisputable array of severe symptoms, observable in all systems of the body (of which crushing, toxic fatigue is but a part) has been present for at least 6 months. It is usually, often in a pattern of remitting-relapsing fluctuating severity, frequently bedbound and housebound and limited even on the so-called “better” days, a life sentence for those unfortunate to be so afflicted. After all the medical scrutiny, tests and investigations patients go through, there is no way that those with neurological M.E. could be found "faking" as Liddle, in his onslaught of vituperative, carelessly penned bile so mistakenly fantasises.

 

As for talking about "tax payers" as if they were a breed apart from disabled M.E. Patients, Liddle should do some real journalistic work and discover that the majority of adult neurological M.E. sufferers have been forced, by the severity of their condition, reluctantly to retire or leave well paid jobs and professions of every kind where they paid tax and often continue to do so as the condition takes its devastating toll on them, their families and carers.

Benefits are not chosen as some comfortable "lifestyle choice" but as a lifeline that is far from luxury when compared to the pay, lifestyle, opportunities and hopes they had before being struck down by this merciless disease in the midst of thriving careers. Other M.E. patients are children and young people with not the slightest incentive to see friends, sporty pursuits, carefree days, partying, adventures and dreams head over the diminishing horizon just so they can look forward to a life of excruciating pain, crippling exhaustion and an existence diminished by being forced to rely on "benefits".

More could, and no doubt will be eloquently said by many others about this outrageously substandard piece of gutter press, as Liddle has on this occasion broken the Code of Practice in lamentable, deliberate ways that few responsible citizens would feel it reasonable to ignore or condone. 

------------------------------------------------------------------------------------

Now I'm going to lie down and recover my equilibrium and "spoons" again.

If I'm going to be even half strong and able enough to attend my WRAG interview next week, I pray I won't be pressed to volunteer for any job half as "pretend" as the one Mr Liddle seems to have carved out for himself in the name of being a journalist.

Valerian Root - sweet dreams & cool for cats?

When I was younger, I used to sleep so well.
In fact, I could drift off to sleep and wake up quite refreshed at whatever time I'd decided I needed to rise. I've never liked to lie-in. I love the early mornings and hearing the dawn chorus was nothing but joy to start my day.

Then came M.E.

Painful, endless nights, like lying on a burning mat, limbs shivering, muscles twitching no matter which way I lie. Hot. Cold. Stiff. Nauseous. Sometimes I can get to sleep, but the sleep is fitful, and I jerk back into consciousness every hour or so. By morning, I'm so exhausted I drop off for longer than I like to, and suddenly it's late (mid-morning is late to me!).

I try to maintain a good sleeping pattern so my body clock isn't thrown, but my body has a mind of its own. When I've overdone things, or pick up a virus, like at the start of my latest big M.E. meltdown, I can sleep the clock round and never feel refreshed or even half human in the waking hours.

I've tried lots of things over the years. I asked my GP about MELATONIN some years back, but she wasn't allowed by her own professional guidelines to prescribe it. If she had, the cost would have been covered by my medical exemption certificate for Type 1 diabetes and similar lifetime conditions. I bought some online from a reputable chemist. Quite expensive to keep that up and I didn't see any huge improvement, though for a while seemed to help with actually getting off to sleep. It's what our bodies produce naturally when we are well and functioning normally. No side effects. Widely used to counteract jetlag etc.

Likewise, in the early days of diagnosis I was prescribed low dose AMITRIPTYLINE to help painkillers to work more effectively and aid relaxation and sleep. But these had many unwanted side effects like weight gain and tachycardia and were eventually stopped. They didn't really do anything for sleep, in any case. Not sleep that felt healthy.

I was never just "stressed", in any case, apart from feeling despair at not being able to function reliably. Plus the emotional struggle any human has with coming to terms with a disability that's an invisible illness, to boot. One that gives the world and their grandma a license to tell you how you could miraculously cure yourself if only you take the quack advice they heard from their next door neighbour but one! (Cures which invariably turn out to be for CFS, or because the patient went into remission which may or may not prove permanent!)

I've tried HEAT PADS, HOT WATER BOTTLES, RELAXATION TECHNIQUES, WHITE NOISE, NATURE SOUNDS, SEA SOUNDS, TREE SOUNDS, LAVENDER, HOPS (the plant, not the exercise!), TENS MACHINES, PERRIN TECHNIQUE, DIET MODIFICATION (more than all usual modification for diabetic health), TAI CHI (when able to balance for the less demanding moves!), COUNTING SHEEP. You name it. Most of these are comforting and relaxing. My favourite of them is LAVENDER, on balance. Heavenly scent, like summer fields and open spaces. A few drops on your pillow or combined with a heat pad can sometimes be just what you need to feel good. Sweet sleep may well follow. Though sometimes it doesn't, for long!

But till some lovely spoonie friends mentioned it on Twitter recently, I had never tried
VALERIAN ROOT (Valeriana officinalis).

I discovered I could buy 90 tablets of VALERIAN (3 bottles of 30 vegetarian 500mg tablets) from Amazon.co.uk marketplace for £2.50 + £2.03 shipping. They arrived two days later.

Only down side- they pong rather like a cross between Tom cat wee and something slightly unsettling you can't quite place! They are sometimes likened to catnip for sending cats wild! The smell is quite unmistakable from the moment you break the seal on the pill bottle. Apparently Valerian teabags and liquid forms have a similar effect. So I lock the doors before taking the lid off now. Don't want to be pulled up by the RSPCA for driving the neighbourhood kitties insane with desire!

I have taken 1,2 and some days 3 per night, staggered through the evening (this is the recommended dose on the label). On the days I have taken them I certainly feel drowsier (nauseous, exhausted drowsy) before bed. That can happen with M.E. too, so a bit tricky to quantify. I have got off to sleep quite quickly too, which is a good thing. I still wake occasionally through night but get back to sleep. Again, certainly not worse than before, though would have to try it when sleep problems are at their worst.

I have certainly slept longer. Last night, with some interruptions, almost 10 hours (10.30pm - 9am) which is excellent. The trouble is still, with M.E., I don't feel much refreshed by that good long sleep. Though an outing on Saturday had all but wiped me out. Still pain, nausea, brain fog (terribly much yesterday in particular), unsteadiness and very little appetite at the moment.

As usual, we'll see how it goes. So far, so good. Apart from the stomach-churning pong! At least your cats will love you!
.................................................................................................................................

Update Tuesday 24th Jan 2012: Took 2 tabs last night around 11pm. Slept with a few minor interrruptions until 11.30am. At which point mum texting to make sure I was ok and not hypo. Managed to struggle down by just after noon. BG 12.0 (high, but not that unusual if I ever sleep late). Headache, muscles weak & "rubbery", heart pounding on and off, chest sore and fibro tender in shoulders, wrists, knees. But on that evidence, the Valerian seems to be working as a natural sleep-promoter! Zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

There's still everything to play for, Lord Freud. We'll have you eat your false promises on toast!

Disabled people everywhere still reeling at the result in the Lords tonight.

Result: Contents (supporting Lady Tanni Grey-Thompson's amendment calling for a pause to the change of DLA to PIP): 213
Not Contents (voting with the Government) 229

Baroness Grey-Thompson refused to back down in the face of Lord Freud's bullying and haranguing, and took it to a vote. While that vote was narrowly lost, not least because of the Lib Dems (only two of them had the backbone, compassion and wisdom to vote against the Tories' speeding train of crushing Welfare Reform), the voice of the disabled, now focused through the breathtaking sacrificial efforts of all involved in the "Spartacus Report" has started to be heard. Started to rock the belligerent boat that is the Government's plan for the sick. The blundering amoral machinations of Lord Freud can temporarily muffle those clear, brave voices. We've seen that tonight.

But we will never now lie down and be silenced.
Now we know the score.
We can gradually, spoonily, make Lord Freud eat every single one of those ingratiating  false promises he made in order to "win" and keep us quiet tonight. As if!
For we are Spartacus.
We have one another and we are one another's strength.
We have the moral high ground the Government has long given away in its scramble to scratch its own back and feather its own grubby nest.

We won't give in.
We go on with gratitude and thankfulness to those who deserve it.
From our sickbeds and our forgotten corners, we can move forward in hope and determination to be exactly who we need to be. With fluctuating conditions, mental health issues, deteriorating and terminal illness, every type of disability and health challenge.

No. We might not fit in your assessment tick-boxes. We might not be conveniently "fit for work".
But we are here. One way or another, we won't be going away just because it makes you uncomfortable in your ivory tower!

There is still everything to play for! We are Spartacus, and we aren't about to roll over and give in. Disability means living with challenges every day, and the Welfare Reform Bill is yet another one to build up our wobbly muscles on!

We've so much to build on, now. So many new friends and champions.
Onwards and upwards, spoonie Spartaci! xxx

Today's the day! So will the Lords do the only right thing?

So today's the day. The last chance for the Lords to vote for an amendment to call for a pause to the proposed changes to DLA (Disability Living Allowance). If not it will be seamlessly morphed into the unfit for purpose PIP (no, not the dodgy boob implants, the equally dodgy Personal Independence Payment!) that may well make unbearable and unlivable the lives of the most vulnerable disabled citizens in our country. They were promised they would never be betrayed. Through the tireless efforts of the disabled through the "Responsible Reform" Report, a new amendment has been tabled.

Again this is the eleventh hour. Again the disabled are fighting for their lives.

With M.E., plus Type 1 Diabetes with frequent severe and unannounced hypos, it has taken all my strength and last shred of dignity just to be transferred from IB to ESA. Even though incompetent and duplicitous ATOS have now plopped me unceremoniously into the incorrect WRAG (Work Related Activity Group), I'm pathetically relieved and thankful they deemed me of limited capability for work at all, given the current level of wrong decisions going to appeal. When I turn up crashed, brainfogged and crippled in my dogcollar at the Jobcentre again, we'll see exactly where their areas of expertise lie.

I have never applied for DLA (Disability Living Allowance) myself, just because, although I have long periods when I seem to fit its most stringent criteria, I find it hard enough to claim the ESA I need to survive, without having yet another ongoing claim where officials can look on me as if I have crawled out from under a stone. If I can manage, I will. The criteria for qualification for PIP were released yesterday here.

I am often like Katy in Case Study 1, but living alone. In that scenario I would qualify for PIP with "enhanced rate Daily Living component" and "enhanced rate Mobility component". At other periods my health may mean I more resemble Rachel in Case Study 2 who qualifies for nothing. Sorry my fluctuating serious lifelong illnesses are inconvenient enough not to fit the tick boxes. Sorry my body refuses to a)recover or b) die for your convenience! No wonder I daren't apply!

The whole PIP assessment thresholds leave you confused and despairing at the sheer lack of coherence and understanding of disability. There is so much emphasis on the upper body that you have to ask yourself if the DWP think all disabled people are mermaids, without legs or crotch.

Ironically, if I can go back to work, the fluctuating and lifelong conditions I have mean I might probably need to claim DLA for extra transport and mobility costs, etc. One day, any one of us might.

So here's the email I've just sent to about 90 Crossbench peers, following a flurry of tweets last night.

If the Government don't tamper with any more balls, sanity and victory may be almost within our grasp!

Email to Crossbench peers:

This morning, the following amendment has been tabled :

Clause 80 - Amendment 50E
BARONESS GREY-THOMPSON
BARONESS WILKINS
LORD LOW OF DALSTON
BARONESS CAMPBELL OF SURBITON

Page 58, line 26, at end insert—

“( ) The Secretary of State must lay before Parliament an independent review of the plans for implementation of the assessments under section 79 before the provisions are brought into effect, and such plans must in particular provide for—

(a) a trial period before any assessment process is implemented fully for new applicants and those transferring from DLA;

(b) disabled persons organisations to be involved in formulating the assessment process.

On behalf of all genuinely sick and disabled people, their families and carers , may I ask you to make it an urgent priority today to vote for this vital amendment to the Welfare Reform Bill?

Following the wise, compassionate and reasoned “Responsible Reform” (also known as the Spartacus Report), the rest of society is starting to grasp the deeply flawed nature of the proposed reforms as they stand. Without a pause today, devastating and unjust changes will be rushed into law. The amendment calls for a pause to reconsider and amend before it is too late. 

We all understand how essential is giving disabled citizens a life that is not just barely tolerable, but which gives them a chance to thrive and enable them to use all their gifts and talents to enrich society, while having quality of life themselves with all their added costs and difficulties in accessing what others take for granted. The Welfare Reform Bill as it stands, without serious amendments, will cost the country so much more in the long run than has been mendaciously suggested by some.

I respectfully beg you to help by doing your part to understand the real issues and vote for what is right.

Thank you so much for your time and attention,

yours sincerely,

etc

Sent to: andrew@amawsonpartnerships.com,
alastair@aberdares.co.uk,
adebowalev@parliament.uk,
afsharh@parliament.uk,
michael.allenby@btinternet.com,
altond@parliament.uk,
amosv@parliament.uk,
armstrongr@parliament.uk,
best@parliament.uk,
p.bew@qub.ac.uk,
abhatia@casley.co.uk,
bilimoria@parliament.uk,
birtj@parliament.uk,
BOOTHROYD@parliament.uk,
brabazoni@parliament.uk,
bramallen@parliament.uk,
lady.briggs@googlemail.com,
butlerslosse@parliament.uk,
campbelljs@parliament.uk,
carswellr@parliament.uk,
deechr@parliament.uk,
dafydd.elis-thomas@wales.gov.uk,
errollm@parliament.uk,
finlayi@parliament.uk,
freybergv@parliament.uk,
fritchiei@parliament.uk,
greenfieldsuuk,
greengrosss@parliament.uk,
greenwaya@parliament.uk,
greythompsont@parliament.uk,
crlguthrie@gmail.com,
halla@parliament.uk,
harriesr@parliament.uk,
hastingsm@parliament.uk,
haymanh@parliament.uk,
hennessyp@parliament.uk,
hoffmannl@parliament.uk,
HoggS@parliament.uk,
HOPEJAD@parliament.uk,
howarthv@parliament.uk,
howee@parliament.uk,
hyltonr@parliament.uk,
ingep@parliament.uk,
janvrinr@parliament.uk,
jaymh@parliament.uk,
listowelf@parliament.uk,
LLOYDAJ@parliament.uk,
kakkara@parliament.uk,
lowc@parliament.uk,
LUCER@parliament.uk,
lord.mackay@scotcourts.gov.uk,
mancej@parliament.uk,
McFarlanej@parliament.uk,
marm@parliament.uk,
martinm@parliament.uk,
mawsona@parliament.uk,
meachermc@parliament.uk,
mckeem@parliament.uk,
murphyel@parliament.uk,
neubergerj@parliament.uk,
nichollsd@parliament.uk,
northbournec@parliament.uk,
oloann@parliament.uk,
oneillm@parliament.uk,
ouseleyh@parliament.uk,
oxburghe@parliament.uk,
palmerad@parliament.uk,
patel_naren@hotmail.com,
pattenc@parliament.uk,
prasharu@parliament.uk,
ramsbothamd@parliament.uk,
richardsonk@parliament.uk,
rookerj@parliament.uk,
roperj@parliament.uk,
ROSSLYN@parliament.uk,
SaltounF@parliament.uk,
sandwichj@parliament.uk,
skidelskyr@parliament.uk,
dalrymplej@parliament.uk,
SternVH@parliament.uk,
dennis@hdstevenson.co.uk,
stirrupg@parliament.uk,
sutherlands@parliament.uk,
tanlaws@parliament.uk,
taylorjdb@parliament.uk,
tombsf@parliament.uk,
walkermjd@parliament.uk,
walpolerh@parliament.uk,
warnockh@parliament.uk,
watsonm@parliament.uk 

Brainfoggy aimless unscripted rambling - marginally easier than typing?

Brainfoggy aimless unscripted rambling, for a change. Maybe marginally easier than thinking, composing, typing, editing, re-editing a written blogpost. But a whole lot more embarrassing and cringeworthy?

Nobody would guess public speaking was a big part of my profession in teaching, ministry, meetings etc!

Gives a glimpse into how, even on a relatively "good" (???) day, brain fog can make it a challenge to scramble your way from one word/thought to another. The subject matter was hardly complex! I can still spot the odd word in there I didn't intend, e.g. International Space CENTRE instead of "STATION"! But what the heck! M.E. whittles things down to what's important. Who gives a flying ferret about it, anyway, apart from perfectionist "don't say anything wrong" me? Nobody! Get over it! Haha - thank crikey I've never pretended to be an oil painting! Lol!

Still, it's saved my finger joints, wrists etc. a bit of pain. Saved my body, if not my blushes!

PS It's taken all day to upload this, in the end, as Blogger v McAfee seem to have refused to play ball together. Not sure if sound/picture will come out co-ordinated either - they did on my laptop! Perhaps that's a mercy!

Brain-dead is a tragedy. Compassion-dead is a "lifestyle choice"

Sorry brain fog from yesterday's info meltdown overload reigns today. I will be mostly cutting and pasting two emails I managed to send yesterday to avoid complete incoherence today!

It was exhausting emotionally, but also exhilarating to watch the passionate, compassionate arguments from peers like Lord N Patel, Baroness Meacher, Lord McKenzie and others who last night voted to defeat three especially vicious aspects of the Coalition government's Welfare Reform Bill. The "Spartacus Report" and its tenacious disabled champions were instrumental in fighting for what's morally right over what is mean and mendacious.

It was dispiriting to find that the BBC was still obdurate in refusing to mention the Spartacus Report in any major bulletin, and its failure to report the government defeats in the Lords in more than a dismissive side note, way down the running order on News at Ten, with obvious spin to scupper the impact.

Even more devastating to hear that Lord Freud had tried "dirty tricks" tactics to override the earlier defeats in an unprecedented late night vote. And that he actually got away with it.

I managed two emails while adrenalin was driving my indignation last evening. Spoons have to be expended while the iron is hot, sometimes, even if it leads to crash and post exertional payback. Many noble disabled campaigners like Sue Marsh, Kaliya Franklin and many others, have fought altruistically for us all, and also made their own conditions worse in the process for the common good. They inspire us all.

I noted that Baroness Benjamin voted with the government, even after I lobbied her politely about ESA last month and the House of Lords sent me a postcard to say she had noted my letter. My fond memories of her on "Play School" are a bit tainted now, but never mind. She was on the losing side!

The first transcript here is a copy of a second email I have sent to my MP Kevin Barron, following the response I got on sending him a copy of the Spartacus Report on Monday, when he emailed me to say:

I have read the report this morning and I will do all I can to let the Government know of its conclusions.

Yours

Kevin Barron MP

I hoped to encourage him to build on the result of the Lords vote and maintain this impetus when the Bill comes back to the Commons:

Dear Mr Barron,

 

Thank you for your email reply yesterday and for your promise to do all you can to let the government know of its conclusions.

 

In line with the research and conclusions in the Responsible Reform Report, genuinely disabled citizens, including many of your own constituents here in Rother Valley, have been relieved and encouraged by today’s defeat of the government in the House of Lords in three votes on various key amendments: namely

 

-to retain automatic eligibility for ESA for young disabled people who are unable to work

-to impose a two year time limit for ESA claimants, overriding the government’s proposal that claimants be reassessed after 12 months

-to exempt cancer patients from the proposed ESA limit

 

I hope you will see, from the wise, compassionate and reasonable arguments raised today in the Lords against the demeaning and immoral nature of the current proposals for Welfare Reform, that it is vital such remarkable victories of civilised action are upheld and strengthened when they come back to the Commons. I look forward to seeing your continued support at that stage if you are able.

 

Thank you again for your support and help for the most vulnerable in our society,

 

your sincerely, etc

Then, to Chris Patten, BBC Chairman, to express concern at lack of coverage:

Dear Mr Patten,

 

Many people on the social networks this evening have been pointing out the obvious pro-Coalition bias of the ‘BBC News at Ten’ coverage of the Welfare Reform Bill currently being voted on in the House of Lords. It seemed pretty blatant, after the government suffered a triple defeat on amendments to protect young disabled people, cancer sufferers and to extend the period of time limited ESA, that the news item was being deliberately pushed down the order in order to “sink” the bad news. It was clear that papers were being shuffled and Huw Edwards was being fed questions to bias the reportage. Instead of the actual newsworthy defeat, viewers were treated to a smoke and mirrors whitewash making the whole thing seem like an embarrassing little blip. Somehow the piece was “spun” to blame the deficit on the disabled people affected, then to imply such a vote shows a need for reform of the House of Lords!

 

Exasperating as this is, it is a bias we see from the Corporation most of the time, and have reluctantly learned at least to tolerate. What is more chilling is the way the BBC News has deliberately failed to give any coverage to the “Responsible Reform” Report (popularly known as the “Spartacus Report”) released this week, revealing the Coalition’s mendacious misleading of the public on the facts of the Welfare Reform Bill. Why is this? The inflated license fee we pay for an ever diminishing handful of watchable “flagship” dramas and HD documentaries should surely buy us the basic right to expect coverage of issues the rest of the country can’t ignore? Just because some of these come in the wrong party colours, don’t toe the party line, or reveal the outright lies being fed to voters, surely this is hardly a valid reason for pretending they don’t exist in the rarefied air of BBC current affairs?

 

 

with thanks,

yours sincerely etc

 

One battle's sort of won. But the war's very far from over.

 

What we can never achieve alone, we can do together. Cos we are disabled, and we are Spartacus!

Spartacus Report gives disabled people a voice at the eleventh hour

#SPARTACUSREPORT Press Release


#SPARTACUS REPORT into proposed Disability Reform


Twibbon to support #Spartacusreport


The voices of those seeking to tip the genuinely sick over the precipice and down into the pit of contempt where human compassion and reason cannot penetrate, reached a deafening pitch long ago. Voices of politicians, tabloids, journalists, the media, even some less perceptive or cannily duped members of the public, clamoured to misidentify the 0.5% of benefit cheats with the 99.5% who have done nothing wrong but fall prey to illnesses that come as part and parcel with inhabiting the human body. These unfounded, murderous opinions have taken over the airwaves like white noise. Too long the truth about disability reform, told from the inside by disabled people themselves, has been drowned out.

But we are still here. With our complicated, messy lives, inevitably filled with fluctuating agonies, or mental illness, invisible suffering, lifelong and degenerative diseases. Plus our added struggles to access transport, public facilities, our careers, our friends and families, housing, mobility. We are still here, and the Spartacus Report, a clear, reasonable, passionate voice for all disabled people, is now here too.

At long last, at the eleventh hour, days before the final votes drag the Welfare Reform Bill, blindfolded, gagged and weeping at its own unfitness for purpose, through Parliament, we have found our voice. The Spartacus Report, funded, tweeted, shared, compiled, publicised, emailed, sent, advocated entirely by disabled people with the few energy "spoons" and fragments of healthy moments they have. Launched yesterday by the concerted efforts of a huge section of disabled voters with access to social media. Now backed by charities, celebrities, councillors, medics, along with so many disabled people and their carers and supporters who know this desperately needed Spartacus Report speaks for them as nothing else has been allowed to do in the current climate.

If time and spoons are scarce, please at least read and share the shorter press release on the link above, if it speaks for you too. Wear the publicity twibbon on your profile, as I am proud to do. If you can, share the full report to all who will listen, to help them hear the truth. It is entirely possible that the person you reach with the report may never have heard the full truth before. The government certainly hopes so. They have pulled out every stop to make sure the facts uncovered here about widespread opposition to their WRB proposals never come to light.

Or if, like I might once have done, you cockily think you will never need such a voice, because you are well, working hard, thriving and with a level playing field before you, think again. Disability is no respecter of persons. Neither is the system being put in place, dismantled, tinkered with and made a monster of; if the WRB goes ahead, we will all be at the mercy of its vicious disregard for human need in the years to come.

Spartacus was a famous leader in Roman times who headed an uprising of oppressed people, fighting for their freedom against a slave-owning oligarchy. We disabled people of the 21st century in the UK have no desire for violence, hatred, war, vitriol or physical weapons. Personally, I believe our armoury lies in reasoned argument, shared hope and encouragement, patience, resilience, persistence, humour, a holding onto the truth and a call to the deepest wells of the human spirit, that no regime relying on greed or propaganda can ever wholly crush.

I support the spirited, truthful voice of the Spartacus Report.
If you do too, please don't hesitate to show the world you too are breaking the silence with a voice that can no longer be ignored.

Blessings to you and yours.

Brain Fog: Slow Down and Simplify, Please!

One of the better definitions of "Brain Fog" in M.E. I found recently here at www.brainfog.org

They rightly summarise how we spoonies struggle:

brain, n. soft, soggy, vaporous, cloud located in upper cranium between ears.

fog, n. soft, soggy, vaporous, cloud located everywhere else.

brainfogged, adj. when one is so completely foggy of heeed that they make sense to none but their own kind.

Cognitive dysfunction just doesn't cut it as an explanation, does it?  If you say you've got 'cognitive dysfunction', people raise an eyebrow in disbelief. If you've got letters after your name and educated to postgraduate level, having made a living with a large element of public speaking, they seem to think you can't be serious that this is a problem?

Mind you, brain fog also tends to be underestimated when you hit middle age. Everybody thinks they know it and suffer from it. They mix up a couple of words or lose their car keys and think this is what you're talking about in relation to M.E. It elicits as many "join the club" comments as "tired all the time" makes people imagine they understand what you're going through. It's why certain people still deliberately inhabiting the underside of stones continue to insist that "chronic fatigue syndrome" is an adequately descriptive nom de plume for myalgic encephalomyelitis.

With true organic M.E., this Brain Fog, which I can rarely type correctly first time without it ending up as "BRIAN fog" (!) that makes it sound too cuddly, often worsens alongside a slump in other symptoms. It's not just some sign of getting older. How we wish!

On days when pain, exhaustion, light intolerance, gastrointestinal issues and nausea etc are worse, brain fog wants its extra pound of flesh out of us, too.

For me, this means words (usually the most obvious nouns, phrases, verbs) go completely AWOL. Sparrows become strawberries. If you're lucky enough to hit on a word at all! Yes, it can be comic. But it sometimes fosters a feeling of frustration and almost panic, as people "helpfully" and usually wrongly, supply the missing word. Conversation becomes a form of cryptic crossword. I usually lose.

Now, on the infrequent occasions I'm well enough to speak to a group, every word has to be written down in case I lose my thread as my energy and voice quickly drains away. Extemporising is a luxury of the past. That's also why phone conversations are such a nightmare. Unprepared, you can't work out who is at the other end. Facts aren't at your fingertips; spoons and mobility are lacking to fetch them from distant cupboards or locked doors in the brain. There's nothing to pin your thoughts around and it can feel like exposed floundering in the dark. It's exhausting and humiliating.

With Brain Fog, sometimes I can't hold an idea, word, number, or phrase in my head long enough to use it. I read a phrase time and time again, losing the sense a moment later, which makes reading anything with a plot more than a little challenging! M.E. bloggers will all know the frustration of trying to remember an idea they wanted to write about, but forgot before they could even make a note of it!

Multiple choice is another minefield or a ladder into a dungeon with missing rungs. People will ask a question, and instead of pausing on a choice on which you can focus and decide, suddenly the first choice is followed with a barrage of alternatives. Meal choices, TV programmes, appointment dates. We can't process information as easily at such times. Even when the Brain Fog is just a bit misty!

Just give us a "yes" or "no" choice, once in a while, and please speak slowly! We aren't being awkward, we're just being chronically sick.

M.E.'s darkest moments: I am worn out from groaning!

Llewellyn King: ME/CFS: Into 2012 without Cure or Care

The link above is a wonderful article exposing the reality of M.E.
I confess I wept on reading the quote from the lady who, speaking about her worst moments with M.E. when bedridden and housebound completely, wrote in an email to Mr King:

"I am not sure I can hang on another year, when every day is so hard to get through. Just a few weeks ago, a doctor laughed at me and said there was no such thing as [my disease], and my husband just sat there, not once backing me. That was more hurt than I can carry for another year. I pray every night, 'Now I lay me down to sleep and please, Lord, take me before I wake.' ”

I reckon we have all been to that precipice point when housebound and bedridden. I recall turning my face to the wall, as best as I could, when I could hardly roll over in bed, one time when my M.E. was at its very worst and sobbing "My life is OVER!" Even with deep faith and conviction that God is in charge, exhaustion brings agonising wilderness moments when we feel nothing but alone. Just like the Psalms constantly cry out from the darkest corners of agony, it's 100% natural as children of faith, we grieve for the full potential we see sucked out of us by devastating weakening illness. Even if, in our heart of hearts we're convinced our lives are valuable whatever our disability, our emotions often tell a bleaker tale.

Could we claim to be fully human if  such moments were alien to our experience? We shouldn't feel ashamed of our tears and rage, or count it as weakness. We just need to support one another through the darkest hours. If we have a faith, we need to embrace the truth that sometimes we need resources outside our own limited striving, to lift us gently up from the pit of despair and to hold us cradled when the last spoon of strength we have is utterly spent, till the worst storms pass and even though so sick we can look from a new perspective.


"Be merciful to me,Lord, for I am faint; O Lord, heal me, for my bones are in agony
My soul is in anguish. How long, O LORD, how long?
I am worn out from groaning; all night long I flood my bed with weeping and drench my couch with tears. 
My eyes grow weak with sorrow" (Psalm 6 verses 2, 3, 6 & 7)

I wish I'd a pound for every time since M.E. struck me down that these words express what I sometimes feel. We know we're not alone feeling these emotions. They've been part of being alive since God was a lad!

What a travesty and disgrace it seems that such heartfelt pleas as Mr King's are still so needed after all this time as a New Year rallying call. Haven't we been campaigning and raising awareness long enough for the world, the medical establishment, the governments, the public, the researchers to take for granted the urgent need for progress right now to cure and care?


But we know different and I'm so grateful for Mr King's articulate call to action. We need to whisper it, croak it, shout it, demonstrate it till truth and justice and healing dawn at last. Personally, I believe God's big enough, loving enough and patient enough to carry us till that day. Even if you are convinced that God is just wish-fulfilment fairytale bunkum, there's still a reason to hang on in there for your own sake and the sake of spoonie friends everywhere, to help make the world sit up and take notice of what's right and what's worth fighting for.


As Llewellyn King writes so well:


"A cure this year is unlikely, but better understanding can start today. Now...Maybe in 2012 the voiceless victims of ME/CFS will be heard, even faintly."

"Spooney!" said the clerk...what the Dickens? M.E. Brain Fog strikes again!

Some days I can't concentrate to read. You've probably found the same problem? I think it's a very common experience for people with M.E.

One day on Twitter, I couldn't work out, after looking at it several times, whether what I was seeing was my own Twitter name or somebody else's with very similar letters. With M.E.-related cognitive dysfunction and brain fog, inputted info sometimes gets mangled on the way in - and out!

The times I have to check and recheck what I write would have to be seen to be believed by anybody not sharing our enforced 'Spoonie'-dom! This often brings laughter. On really bad days, it brings tears of sheer frustration through exhaustion! Even after endless checks, some real "howler" mistakes slip through. As a grammar Nazi by natural inclination, few things are more galling to me than seeing errors I've made in print just through M.E., when before, I could have spotted them a mile off! The silver lining here is the empathy this frustration can give us for friends with dyslexia who deal heroically with word blindness all day, every day. Not just when brain fog descends.

Reading and writing are some of my principle joys in life. So naturally, I notice the changes to perception and information processing M.E. has brought.

Over Christmas, I was rereading Charles Dickens' "Great Expectations" on Kindle. I love Kindle. Light as a feather to lift and hold. Adjustable text size for aching eyes. Adjustable brightness for light-sensitivity. No cumbersome pages springing back or weighty tomes hurting your fragile wrists. Much as I love "real" books, with M.E. they present untold problems, though I hate to admit it as a book lover.

It shows how much M.E. changes your life when your mind immediately reads a capital "ME" as "M.E." in most contexts. I was getting tired and struggling. I was rereading a sentence, a paragraph, a short phrase time and again just to take in the meaning and follow the plot!

I was reading Chapter 20, where the hero Pip travels to London to be schooled to become a "gentleman" and fulfil the eponymous 'great expectations' predicted for him. In the lawyer Jaggers' office, Pip witnesses a heated exchange between Jaggers and a man called Mike.

I read the line:

"You infernal scoundrel, how dare you tell ME that?"

Of course, the capital letters "ME" at first jumped out at me as a reference to our illness! This wasn't helped when over the (virtual) page, came the line:

"Spooney!" said the clerk, in a low voice, giving him a stir with his elbow.

I don't recall associating either the capital letters ME or the word 'spooney' with a devastating neurological disease last time I enjoyed a Dickens novel! Really need to get out more, don't I? If only, eh?

Ed Miliband's Happy New Year to the Hardest Hit

Now Ed Miliband gets tough with onslaught against "evil" of benefits scroungers

Happy New Year to the genuinely sick, disabled and hardest hit in society.

Labour joins ConDem's vicious rhetoric of recent months, tarring everyone genuinely unable to work, or unemployed through lack of jobs in the current economic cuts, with the same stigmatising brush as the 0.5% of claimants who aren't genuine.

Why don't they root out this tiny minority once and for all? So the genuine, struggling 99.5% of citizens can be freed from vitriol and opprobrium they have never deserved?

Either this article outlines a parroted-for-votes, tabloid-licking ignorant whine that shows no basic understanding of issues we expect from the politicians we all elect, or it is sinister in the extreme. This is not even an intelligent ploy to win Labour votes!

Evil or plain stupid? You can't have it both ways.

Many today are exasperated beyond measure, from every shade of the political spectrum. The "facts" here are hyped half-truths and downright lies. The real policies to move us forward are conspicuous by their absence.

What a cruel joke to remember how Kaliya Franklin (@Bendygirl) used all her strength, persistence and perspicacity to show Miliband the difference between "scroungers" and the genuinely disabled and chronically or fluctuatingly sick. Watch again, incredulous as you may be after today's U-Turn from Ed Miliband's moral compass here 

Kaliya Franklin, from her wheelchair at the 2011 Labour Party Conference last September, won the argument with Miliband so recently, he cannot possibly claim to have forgotten his pledges and promises in the wake of their meeting so soon. Shame on him.

Here he blithely regales us with his New Year Message for 2012:

"When politicians shrug their shoulders in the face of other people’s despair, they are not just abdicating responsibility, they are making clear choices. That is as true now as it was in the Great Depression during the 1930s." Politics can make a difference: Ed Miliband New Year Message

With the quote above, he surely writes his own political epitaph.

With no difference now discernible between the major parties' lines about the most vulnerable in society, we must look elsewhere for compassion to carry us through what we can be sure are desperate days. Days that put me in mind of words ex-Laureate Ted Hughes wrote in his poem 'November', still true about the trials faced by so many this January.

Only Hughes was just capturing the merciless weather. Animals caught by poachers or gamekeepers hung helpless but stoical on a fence. This is hate treatment meted out to vulnerable, ordinary human beings with no redress or resources to fight back, in many cases. But the tide has to turn one day.


In the drilling rain. Some still had their shape,
Had their pride with it; hung, chins on chests,
Patient to outwait these worst days that beat
Their crowns bare and dripped from their feet.