JOBCENTRE WRAG-TIME a poem

I went to the local Jobcentre

With painkillers, stick and bag

I had to go, fearing sanctions

Cos I've gone and been put in the "WRAG."

It makes me feel poorly on buses

But with hypos I mustn't drive,

So I stumbled in all of a-tremble,

And barely a quarter alive.

It took me all my precious "spoons"

To balance and to breathe,

I had to watch the pavement

As it starts to shift and seethe.

My 80 year old mother came

To help me open doors

Which invariably seem to stick

Defying gravity's laws.

My appointment was half past eleven,

Though I hadn't slept night after night.

My legs felt as wobbly as rubber

I was sickened by motion and light.

But the Jobcentre seemed rather quiet

With everyone there in their place,

No loud noises were blorting to hurt me

Which was abso-bloomin-lutely ace.

A lass who was wearing a label

Which I guess spelled out her name

Started asking me what was my business

And the reason that I came?

I explained I'm in the “WRAG” group

And I had to meet the girl

Who's my “Personal Adviser”

Who I'll call, for rhyme's sake, “Shirl.”

She looked me up, she looked me down,

She showed me to a chair,

Where in pain I tried to balance

Near to others who were there.

Some were reading adverts,

While others filled in forms,

Some jiggled kids in pushchairs

While others stifled yawns.

But everyone seemed friendly,

Efficient, polite and calm,

And as I got my breath back

One young woman touched my arm.

She said my name and greeted me

And helped me cross the carpet,

Pulled out a chair to help me

Cos by now my “spoons” had scarpered!

She reassured me from the off

She wasn't there to press me,

ATOS had done what ATOS do,

Here no one would undress me

Or frown and say “M.E.? What's that?”

You look fit as a fiddle!”

She listened and she understood

(Not influenced by Rod Liddle!)

I didn't wear my dog-collar,

So I was a bit astounded,

She knew the kind of help I'd need,

Advice was wise and grounded.

She tapped on her computer screen

To calculate & compare,

If work from home might pay at all

What hours, what skills to share.

She knew from my work history

I wasn't one for shirking,

She knew that were I well enough

I'd much rather be working.

She totted up the hours

I could work or volunteer,

On top of what I manage now,

If better health were here.

She built on what my skills are

To make helpful suggestions,

She let me pace things as we talked

And answered all my questions

She learned about my brainfog

And saw it one-to-one,

She's the face among the faceless,

I was really glad I'd gone!

I asked if I had to see her

Every month from here on in,

She said it would not be needed,

(My knees must've met my chin!)

I could call her number any time

For any advice at all,

It should be another year or more

Till my next medical call.

She was honest about W.R.B.

And all the uncertain changes,

She well understood her clients' fears

And the future's scary dangers,

So clued up and supportive,

She went out of her way

To fetch me a pack to make a claim

If needed, for DLA.

Since then I've heard two other friends

At different JCPs,

Have also had this kind of help

In different degrees.

Although it took days to recover,

From this trip to the “bowels of hell”,

I consider myself very fortunate

I've a positive tale to tell.

Before you say, “yes but, no but,

ESA's just for a year.”

I must meet that bridge when I come to it,

I'm thankful for now and here.

For now, I was saved an unequal fight

To be put in the group for “support”,

Not terminal ill, not yet a corpse,

I guess I've been put where I ought.

I know the harsh rules of D.W.P.

Won't find me a miracle cure,

With their strict time-limitation,

But the future is seldom sure!

We can only live in the moment,

And fight on for those with no voice,

Play fair even when we've been diddled,

Or grow bitter and bolshy by choice.

Back at home I was soon reminded,

How true were the things we'd discussed,

How far I am from “fit for work”

The adrenalin soon repercussed.

I slept till the daylight was dying,

As body and brain disengages

With the payback from that short journey

I just couldn't function for ages.

But at least one Jobcentre employee,

Understands disability more,

Has more now of M.E. awareness,

It won't stop me fighting injustice,

With others whom ATOS have harmed,

But I went to the WRAG, and I learned some,

As with all things, forewarned is forearmed.

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.

The dreaded DWP phonecall - but all is calm, all is bright (for now!)

It seems a crazy and contradictory situation to be thankful for being told you are "unfit for work". Does that make someone a scrounger or a conscientious realist? I hope you can understand my gratitude that for now, while I am too ill to leave bed or house some days, this is the best outcome for me for the time being.

An older gentleman from the DWP rang me this morning at 9.48am. I thought he was about to tell me I was being called in for a Work Capability Assessment (the much-criticised and humiliating DWP medical) carried out by ATOS.

On the contrary, he was very gentle and full of reassurance. Nothing to worry about, it was a "courtesy call" to tell me the outcome of my filling in the ESA50 last month. Because this is just a couple of days before the post shuts down over Christmas, he wanted me to know the outcome, just in case the official letter doesn't reach me in the next few days. He hopes it will come tomorrow, but can't be sure with the Christmas rush.

He explained that my migration from Invalidity Benefit (IB) to the new equivalent Employment and Support Allowance (ESA) has been successful. He also stated that I should not be contacted again for WCA for 18 months. The change over should happen about January 17th, and the rate will remain the same. I asked whether this meant Support Group (SG) or Work Related Activity Group (WRAG) and he said the latter, which is right, and what I had hoped.

This usually entails 6 Work Focused Interviews (WFI) with a personal adviser. These cover matters like dealing with your illness, acquiring skills, voluntary work etc that may help prepare for a future return to work. Basically, tackling any barriers that need to be overcome in order to return to employment. The sort of things always uppermost in my plans and the focus of my efforts even on my very worst days. (Also a more structured equivalent of the work related interviews I had in 2008 with a personal adviser at the local JCP in the weeks after my original claim once SSP had run out).

I will need to be careful to try and be well enough to attend these WFIs when called, as this is part of the contract, even though at the moment (until and if the hotly contested 1-year time limit on contributions-based ESA comes in through the Welfare Reform Bill in April 2012) there is no sanction if you cannot find a job by the end of the 6 WFIs. That is tomorrow's worry, even if it remains today's fight on behalf of all those who have not been fortunate enough to have been placed in the correct group. Please don't think this post is smug or triumphalist. I feel for everyone who has fallen foul of the deeply flawed system through no fault of their own.

Figures I have seen claim that, of those who apply for ESA:
6% - Support Group
16% - Work Related Activity Group
 36% -claim withdrawn
3% -  claims in progress
39% - "fit for work"

Sorry if these aren't the latest statistics. I've seen various figures quoted and am now so brain-fogged, I can't sift them for the most recent! This info is taken from here

Point I'm trying to make is I feel very fortunate I have been put in the WRAG, at least, just from medical information without the full ATOS medical. Perhaps they looked back at the one I had in 2008 and saw from my records that my illnesses (Type 1 diabetes, no hypo symptoms & M.E.) have not improved, and have in some ways deteriorated.

I would be interested to see the ESA85 medical report from which such a decision was taken, but won't do this with any intention to appeal. The support group is limited to very specific cases, and if the time comes when I fit those criteria, it will no doubt be apparent to those putting me through the various work-related hoops!

More determined than ever to keep trying to raise awareness and fight for the many people in dire need who have been cut adrift. When I was fit to work in years past, I always tried to be compassionate to those who were hardest hit in society. I won't be stopping now. Though at the moment, I must leave the blazing ferocity of the laptop screen and rest in a darkened room! Certain nightmares have been put on hold, for now. If I was any more thankful and grateful, my heart might well explode!

MRC announces ME/CFS research projects worth £1.6m

M.E. Associations breaks the news embargoed until today

This sounds like great news, if it is funding for biomedical research.

I'm not really sure what to think, yet. Any ideas on the people behind the various projects?

There doesn't seem to be an immediate drive to separate Myalgic Encephalomyelitis and its causes from "Chronic Fatigue Syndrome" with its flabby umbrella of symptoms muddying the waters. M.E./CFS is still referred to as "the illness". Frustratingly, CFS is referred to first, i.e. CFS/ME many times in the press release. Is this going to be more smoke and mirrors?

I sincerely pray it won't just be more money down the drain, like the PACE trials.

Much to be cautiously hopeful about for 2012.

Shuttlecocks and Shattering Shocks

BBC News: Is the new disabled work benefit working?

I don't hold out much hope for this programme tonight. I don't get a good feeling from this BBC preamble by Helen Grady.

An M.E. sufferer who is "one of the country's top wheelchair badminton players" and "a regular at live action role-play festivals"? Some mistake in the report? Some mistake in the diagnosis? I don't pretend to know.

Perhaps it's just my ignorance. I thought being top at badminton must mean you can do more than apply yourself in "short bursts". I know shuttlecocks are light pieces of equipment. Badminton isn't squash. But even from when I played it very occasionally years ago, before M.E.completely shut down my neuro-immune system, I know it's one heck of an energetic game. Far beyond anything I could manage now. Is it just because I'm now 50, having suffered M.E. in remitting-relapsing deteriorating pattern since at least my 20s, and the M.E. sufferer in the above-linked article is still only 27?

I sat talking to visitors today. Sat slumped, propping my head to help my neck to support it so as not to appear rude or bored. Two low-maintenance dear old friends this morning who did most of the talking. One dear old friend this afternoon, to whom I showed a slide show of photos on the laptop as we chewed over some family history brick walls, a shared interest that brought us together. My Mum even stayed long enough to make the tea for us to save me some extra "spoons".

Now I am utterly crashed. Head spinning. Throat hurting and hardly any voice left. Wrists too sore to type for long. Eyes blurred. Unsteady. Ears singing. Heart palpitating. Feverish and shivery. Nausea and pain making eating tea difficult. Forgetting my words. Exhausted to point I need to sink down right here on the carpet, if I didn't risk not being able to get up again. Hot and cold by turns because my autonomic nervous system is completely up the spout.

Even without badminton or any outing today, many things with M.E. are way out of bounds now to me. Co-ordination, concentration and strength to drive, for one (though diabetes type 1 with no hypo warnings rules that out in any case). Badminton or any strenuous sport, for another. Self-propelling myself in a wheelchair for yet another. Even carrying and using my walking stick is making my hands, wrists, arms, shoulders and chest unbearably sore this last week.

A dear family member, also diagnosed with M.E. much younger than me, who got treatment right away, does drive now, does some teaching and plays some tennis and does some cycling. So I know it's possible, in remission. But she is always aware of her limitations. At her worst, she has the huge frustration of knowing she can't keep it up, either safely, or at all.

I have to lie down, now. I can't say more about this today. I refuse to whine. I won't criticise. But I fear the backlash here, yet again, from people convinced that with full-blown M.E. we are all fit for the Olympics and driving from Land's End to John O'Groats on a regular basis. We are patently not. Not all of us. That's all I know. Am I living on a parallel planet? ATOS are sponsors of the Paralympics. Is this propaganda for them?

No doubt I need to shut up, rest and listen to the programme with an open mind, if  possible, even if with a pretty foggy brain!

I doubt after my little goals today I'll still have the concentration to listen reliably. Neither the concentration, the stamina or the heart. Not in Christmas week. Not when the tiniest unexpected, even delightful moment, can soak up the last bit of energy and health at my fingertips. Not while we're still reeling at the news that renowned and tireless diability rights campaigner Sue Marsh (if only poor Sue was really able to do all she does and not be made disablingly sick and tired!) joins the legion of genuinely very sick and disabled refused help: Guardian: Comment is Free: Sue Marsh: No disability living allowance for me. Nowhere to turn for many more

The description of tonight's programme runs:-Can You Touch Your Toes, presented by Anita Anand, will be broadcast on BBC Radio 4 at 20:00 GMT on Tuesday 20 December.

If I manage to listen to "Can You Touch Your Toes" with eyes shut and brain engaged, I'll try to blog about it later or maybe tomorrow to open a forum here for any reactions.

I began by saying I don't hold out much hope. But I still do. I always will. Or that really would be the end of the road.

Footnote: Having listened now, I really haven't much inclination to add to my comments above. Spoons are precious to all of us. My experience of M.E.bears little resemblance to what was implied on the programme. I can't speak for others.  That ATOS and the WCA is deeply flawed was clearly demonstrated, though. I'm off to practise for enforced work as a draught excluder. Night all. Tomorrow's another day.

You don't understand M.E. - on The Wright Stuff

Thus runs the blurb for a slot on Matthew Wright's "The Wright Stuff" this morning. It's about the latest study on M.E. and school absenteeism:

'Part 5: You Don’t Understand M.E.!
Then: You don’t understand M.E! A new study suggests one in 100 school kids are battling chronic fatigue syndrome, a major reason for absence. What’s more most are undiagnosed which is perhaps not surprising as the symptoms include extreme tiredness, lapses in concentration and mood swings. It’s clear a lot of you want to talk about ME and the way the rest of us react to it, so that’s what we’ll do.'

Sorry this has adverts. Sorry it needs scrolling through till you get to the M.E.bit. For once, IT WILL BE WORTH IT! (It's after the 4th ad-break from about the 52nd minute onwards).

I was frankly sceptical before I managed to watch it on Channel 5 catch-up. We've had our bellyful of tomfoolery, after all, haven't we, with yesterday's offerings from the Food Hospital?
I only noticed it when it was mentioned on an M.E. chat group.

So I waited till I'd recovered from a lovely but exhausting Christmas visit from friends who really DO understand M.E. Then I tuned in, all but peeping between my fingers from behind the settee. Well, lying on the settee, anyway.


IF YOU WATCH NOTHING ELSE THIS CHRISTMAS, PLEASE WATCH THIS! IT'S THE MAINSTREAM M.E. COVERAGE YOU HAVE BEEN WAITING FOR ALL YOUR LIFE!
You Don't Understand M.E. on "The Wright Stuff" Channel 5 15th Dec 2011


Matthew argued it was "still the most misunderstood" illness in a build-up link earlier in the show, so I took that as hopeful! By the end I was almost weeping with thankfulness and joy!

Snippets include: Matthew Wright saying M.E. has been "given horrible nicknames in the past". He made the effort to pronounce myalgic encephalomyelitis correctly and list many of the symptoms over and beyond fatigue.

There was sympathetic balanced comment on the "confusion" over the disease in the popular imagination. Virus, glandular fever, genetically inherited, cycle of good and bad times, crippling - you'll hear all these words spoken with true feeling! A miracle in itself!

Esther Rantzen and Emily were shown in a photo (from the Mail Online site - but don't despair!). Guest Anne Diamond only said how she considered Esther a tuned-in mum, so she took seriously that this was a real crippling disease.

It was questioned, considering all that's known about M.E., whether it was feasible, as this latest study claims, that early diagnosed teens can get well from this in 6 weeks.

So refreshing to hear the tone of the discussion and helpful content being broadcast to the nation. Excuse me if my hasty notes are a bit sparse. I know you'll want to listen for yourself, when well enough, anyway!

 Why not listen to it as an early Christmas presie to yourself? It'll get you in the mood to celebrate even if you can't raise your head off the pillow!

Anne Diamond spoke from a parent's point of view. The need to know when something is just teenage malaise, and when it is the serious neurological disease M.E. I couldn't get used to all the worried, shocked expressions on the faces of the panel and the audience alike as they heard the truth, many of them for the first time!

Anne said there was evidence (evidence!!! wheeeeee!) that there clearly is something there. She compared it to her personal experience and campaign for recognition of Cot Death. Cot Death used to be pooh-poohed too, but is now recognised and taken very seriously.

Another guest, Steve Furst was asked if it might be psychosomatic, but countered at once that understanding is in many ways embryonic, so that's not something people can assume at all. Genius!

It's all about education, I believe one of the panel said. Oh yes, it is! Amazingly, this programme has been the best thing I have EVER seen, for educating the wider public and dismantling the rubbish that's the usual fare we're served about M.E. in the media, in doctor's surgeries and elsewhere.

It was said, from the study, the implication is that it is easier to treat if caught early. Later diagnosis means the disease can have had a hold, doing untold damage for many years.

Then they took three callers on the phones. All three wonderful callers made the time left really count, and none of us will be able to thank them enough. Not a word was wasted.

Jo (32) from Dorset had been diagnosed at 15 when doing her GCSEs. She told of being bedbound for a year and needing to use a wheelchair at times, her mum having to carry her up the stairs. You could see the guests wince at the revelation of such real suffering. Jo explained articulately that although much improved, she didn't consider herself cured even now, and had an "awful immune system". They concluded that if it's M.E. then, it's unlikely it could be cured in just 6 weeks! It was acknowledged that depression, suicidal thoughts, mental anguish only follow from the unremitting severe suffering, and are not a cause of the disease. Jo had improved after having an op on her ovaries, but nobody knew if this was connected. Just like a friend of mine who is in remission from severe M.E. after cancer treatment. One day we will know if these other treatments are affecting the body systems attacked in M.E.!

Jo said she had lost most of her friends, who grow tired with waiting about for someone who can rarely join in.

Duncan from the Orkney Islands was the second caller. His wife is ill with M.E.He explained how short term memory loss is one of the long term side effects she suffers. This makes it impossibly difficult to hold converstions on the phone. How familiar does this sound? How refreshing to hear the truth spoken to help everyone out there to begin to understand. Comments came from the panel like "Shattering!" "Terrifying!" "The lack of help!" and "To be treated as if there's nothing wrong with you!" The message was certainly hitting home at last, with not a nay-sayer in sight!


Will was the third and final caller and also spoke so well. Matthew Wright was genuinely sorry, wishing they had more time for the subject. The studio phones were apparently ringing off the hook. He ended the segment, regretfully, by saying he couldn't think of a phone-in so disquieting. He finally promised, "We will do it again!"

I promise this one will restore your faith in at least a section of the media. I hope the awareness it has begun to raise will be the biggest winter snowball ever. I hope, like me, it brings you hope and joy this season! XXX

Is it just M.E.? Or am I sick and tired of being a bit peckish?

Food Hospital on Channel 4 last night caused such a shock wave of disbelief and anger through the online community of Tweeps with M.E. It's a wonder it wasn't top trending! Ulcerative colitis only got in the trending list yesterday, of course, because the news had broken that celebrity UC sufferer Darren Fletcher, Manchester United footballer, announced the disease would force him to take a long break from the game. M.E. hasn't made such headlines since the last of the umpteen times Emily Rantzen claimed to be "cured" by the Lightning Process before relapsing again!

Food Hospital's episode including "Chronic Fatigue Syndrome" came on the same day as BBC Breakfast revealed 1 in 100 secondary schoolchildren were "sick with M.E." This, of course, after being "diagnosed" in haste with some then "fully recovered" after six months. No Canadian Criteria used, naturally, where a whole range of diagnostic symptoms that include much more than mere "tiredness" have to last for at least six months anyway!

Viewers to the Today (link on yesterday's blogpost) programme were fed the old lie that "M.E." (the auto-immune, neurological, severe and chronic endocrine disease) was identical to the woolly umbrella term "CFS" (a collection of symptoms that can apply to any number of different ailments). All the old myths and dangerous half truths.

Then comes "Food Hospital" with its patronising, simplistic smorgasbord of pseudo-science. People wonder why PWME (People with M.E.) despair, faced with this relentless tide of misinformation. We all needed to take the phones off the hook last night to avoid the calls of well-meaning "friends" seduced by this plausible tosh, telling us they'd just seen a mainstream programme that showed a "cure" for our oh-so-annoyingly persistent multi-systemic physical disease!

The cure? Simple! The girl (Steph) who had been feeling less than well for some 13 years when she was a student, quite evidently had Chronic Fatigue Syndrome. NOT M.E., though no doubt one of the 52% of GPs "confident" in diagnosing M.E., or the 48% who still can't be bothered to learn about it, had told her she had M.E. In no way is this that poor lass's fault. I'm sure we all wish her well and health to enjoy the rest of her life.

The food experts, while peddling all the usual lies that M.E. could still be psychological in nature rather than physical, took a rough survey of Steph's perceived symptoms. Turns out she wasn't eating regularly. Most of her vague headache symptoms, aches and tiredness were down to blood sugar issues and dodgy eating habits.

Hey presto! The prescription?

1.Nibble a bit of dark chocolate (serotonin levels, blah blah blah, nothing new there) which she admitted on camera actually had no effect whatsoever.

2. Regular healthy eating. Which most of us, not least those of us with co-morbid conditions like Type 1 Diabetes, have followed with absolutely no effect on other complex M.E. symptoms.

Next thing we know, Steph is swimming. Slow but sure signs of recovery. They had to stick a bit of Graded Exercise Therapy (GET) in there, to placate the Psych school, didn't they? She's back at work, too, and Bob's your "fit for work" uncle! DWP kept happy (if deluded) too! Sorted! Simples!

-CFS caused by the above - cured. Tick.
-M.E. caused by faulty neuro-immune/endocrine damage - no dice. Cross.

Twitter was on fire. For genuine PWME, knowing we have each other's understanding is one of the few things that stop us despairing. Stop us going crazy under the added pressure of the media and government's refusal to show M.E. as it actually is. Not the way it would be convenient; that is, if it could morph seamlessly into Chronic Fatigue and then melt away with a bit of diet and lifestyle gobbledegook leaving patients glowing with health and grateful to every quack and charlatan.

WARNING: Don't watch the codswallop on the first link below if you actually have Myalgic Encephalomyelitis rather than a bit of mild "chronic fatigue" without
a) watching your blood pressure
b) having a pillow to punch and/or bite
c) being in a mood to laugh rather than cry
d) realising some of these buffoons will one day have to eat their words

The Food Hospital Series 1 Ep7 on Channel 4 First Broadcast 8-9pm 13th Dec 2011 Serious chronic neuro-immune disease or a bit tired and hungry? PWME watch at own risk! Opinions expressed on this blog are my own.

Dr Esther Crawley talks to John Humphreys on BBC Radio 4  (John Humphreys surprised it can be genetically inheritable, and happy to revive "Yuppie Flu" and "M.E. properly called Chronic Fatigue Syndrome" etc. Makes you realise what he was actually thinking when he was in the flat of a woman with M.E. in his benefit cheats programme.)

Dr Ian Gibson talks on BBC Radio Norfolk about who & what is really behind this refusal to accept M.E. as a neurological disease  Dr Gibson is honest about the real vested interests that insist M.E. is psychiatric. Namely the man who "runs the whole show." (*cough* Simon Wessely ??? *cough*). Surprise, surprise. So refreshing to hear someone with real expertise saying what so many have long suspected. We're not out of the woods. But somebody must be running scared by the truth!

A voice crying in the wilderness?

The Welfare Reform Bill is now in the final stages of being read and voted through the House of Lords.

Yesterday came the dire news that under Universal Credit, all but the most severely disabled children's money will be halved. Yes - disabled children's means of support snatched away to pay for greedy bankers' mistakes. It is nearly Christmas. But tragically this isn't Dickens' "A Christmas Carol" we're reading in front of cosy fires. It's the reality of living in the UK.

This comes as we're still reeling from the announcement that cancer patients undergoing chemo are to face the shambolic humiliating pantomime of the Work Capability Assessment, that is proving so deeply flawed.

In more positive news, I got excited to see M.E. had crept into the midst of top news stories today. It was about BMJ Open's research here: BMJ Open: Unidentified CFS/ME is a major cause of school absence . The item on BBC Breakfast Time this morning can be watched here: BBC Breakfast : Chronic Fatigue Syndrome 'affects one in 100 pupils'

Can the Government continue to ignore and downplay M.E. after this? The cynic in me says of course they can. And will. The believer and fighter in me says, we have to move forward in hope and thankfulness. We can still light a candle in the dark.

Not wholly surprisingly, the impression viewers were left with is that M.E. is identical to the umbrella term "chronic fatigue symdrome"; and the mistaken myth that the disease myalgic encephalomyelitis can be cured in the shake of  lamb's tail by a spot of CBT and GET before being fully diagnosed.

Meanwhile, it's taken most of my spoons to get through the simplest tasks in the lead-up to Christmas. Last week I "paced" myself through sending, emailing, addressing, personalising my usual batch of around 200 cards. That put me out for the count for days afterwards.

On Saturday, with lots of support from my mum, I managed to put up a tiny nativity set on my window ledge and decorate our small tree that sits on the floor where I don't have to stretch much. Trailed tinsel round a few surfaces. Stuck the cards along the closed piano lid. Pinned "Peace on Earth" banner to one wall. Placed a few candles on the mantelpiece. That was all I could manage, and plenty to make the room look ready for the quiet time chronic sickness demands I spend. Don't get me wrong. Jesus' birthday will be filled with joy for me and mine just the same!

What energy and health "spoons" I've got left I used to cajole my addled braincells into writing a letter and an email to try and do my little bit to challenge the worst Scroogeliness of the Government.

First was a letter to Baroness Benjamin, Lib Dem peer in the House of Lords. Well, I used to watch her on BBC's children's programme 'Play School' playing with Hamble, Jemima and Big and Little Ted. Maybe she owes us one? Seriously, she has a heart for children. I wrote to ask her to oppose the proposed one year time-limiting of ESA (Employment and Support Allowance), which will impact on children within affected families too.

The second was an email to David Cameron, the PM. The Commons, not least his partner in crime Nick Clegg,  have been giving him a rough ride this week over his veto on the EU. Yesterday I did my part to encourage him to reconsider this halving of benefits to the families of disabled children. Neither issue may affect me directly, you may say. But, "we're all in this together" is true in my mind, even if David Cameron only mouths it when it suits. In the words of the Manic Street Preachers: "If you tolerate this, your children will be next."

Now we know this to be true, how can we stay silent?

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Letter sent to Baroness Benjamin (Lady Floella Benjamin) via the House of Lords:

Dear Lady Benjamin,

Time-limited Employment and Support Allowance: Welfare Reform Bill Report Stage & Third Reading

I am writing to ask if you would consider voting against time-limited Employment and Support Allowance (ESA)? The proposal is to limit this to just one year, and can still be opposed, I believe, in the coming Welfare Reform Bill Report Stage and Third Reading.

People with serious illnesses and disabilities are in despair at the prospect of being left with no income, scarcely able to function at home most days, let alone work. While I live alone, I feel I have to ask your help for others, including young people, who will be adversely affected by losing means tested ESA after twelve months if they live with somebody who happens to be fortunate enough to have an income at that time.

I am a Methodist Minister, ex-junior school teacher, formerly the first English Methodist Mission Partner to Sucre, Bolivia. In 2007 I was forced to retire from my calling and profession by the neurological auto-immune illness Myalgic Encephalomyelitis, against which I had already been battling for over a decade since contracting giardiasis working in South America. If ESA were to be limited to one year, it would imply some miraculous cure is envisaged by the Government within that year. 
 
Like me, many disabled people are unable to work, even were jobs actually available, through no fault or “lifestyle choice” of their own. 
 
People with serious, lifelong, degenerative or fluctuating relapsing-remitting conditions will all be affected by this, children, young people and adults alike. People with Multiple Sclerosis, Myalgic Encephalomyelitis, some forms of Cancer, Parkinson’s Disease, Cardiovascular, Renal & Pulmonary Diseases, Mental Illness and many others will be left cut adrift from all hope and help, in spite of much empty rhetoric we hear to the contrary from Lord Freud and others. Meanwhile the media increasingly demonises all sick and disabled people and paints them with the same brush as benefit cheats and scroungers.

The one year time limit proposed for ESA is surely unfair and at best mystifying to right-thinking citizens? Where are the jobs or cures that make it reasonable or humane?

I know that at your Liberal Democrat conference earlier in the year, members voted overwhelmingly to oppose any such arbitrary ESA time limit. I respectfully plead with you, on behalf of all the genuinely long-term sick who are now living in dread of this, and so many other crushing blows from the Welfare Reform Bill, that you stand up for the most vulnerable members of society.

Many thanks for your understanding,
yours sincerely,
etc

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Email to David Cameron about cuts halving benefit to disabled children:


Concerning benefits for families with disabled children


Dear Prime Minister,

I am concerned about the 50% cut to benefits for many low income families with disabled children which was, to the horror of all right thinking citizens, voted through the Lords today.

Families with disabled children incur higher hidden costs, as I'm certain you know. These costs are worryingly high in wintertime. Many families with disabled children are forced to keep their heating on when mobility is impossible.

Any cuts to these household budgets already reined back to the bone are frankly inhumane. Your Government is proposing that within the Universal Credit, Disability Additions will be 50% lower than their current rate. £1400 less per year is more than these families can cope with. Why would you target unnecessary cuts at the most vulnerable disabled children?

I hope this Christmas you can find it in your heart to relent at the brink of this immoral and deadly mistake.
Yours sincerely etc