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?

..........................................................................................................

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

................................................................................................................................


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

Why Are We Waiting? Carry On Up The ATOS Assessment Centre

I know how uncomfortable and step-ridden one of the ATOS Work Capability Assessment Centres in Northern England is. It's the one I had my last assessment at in late 2008 at which I was passed as unfit for work. There is a ramp, somewhere, allegedly, but you have to have eaten a Sat Nav to locate it, if memory serves. Which with brain fog, it most probably doesn't!

I heard today about another friend who had her WCA there this week. She was accompanied by her husband. She has had serious health problems for some time. After having to be off work frequently through no fault of her own (she has nurse training among other skills and was doing a job interviewing patients) there was some difficulty with her colleagues making her life hell because they were having to pick up extra duties in her absence. She's conscientious, hardworking and very caring. Nobody felt worse than she did about being in this position. As her condition deteriorated again, her doctors told her she would never work again and she was forced to leave her job permanently.

When she got to this ATOS Centre in the city, she found herself in the waiting area with another man. The man was obviously in some considerable discomfort because of the low chairs with no arms. The wait dragged on. And on. Apparently four of the ATOS Health Care Professionals on duty that day were off sick. Ironic but true.

Luckily, my friend had taken the necessary medicines with her to last through the lengthy wait. The other man, who was with his wife, was having to move around in his chair and stand from time to time as well as he was able, to relieve his pain. He explained to my friend that he was afraid his back and legs would go into spasm if he remained in the uncomfortable chair. I remember when I was there, if I could have got down and laid on the floor rather than balance, draining every last ounce of spoonie energy, I ached to do so. My friend could clearly see what agony he was in, as a nurse is trained to. Perhaps ATOS had hidden cameras to prove my friend "fit for work" because she could "diagnose" someone else's pain?

The man's wife asked the girl on reception how long the wait might be. She was curtly told that couldn't be divulged. The wife was almost in tears at the cavalier treatment of her husband. My friend, unable to ignore this (as a compassionate human being?) also asked the receptionist if maybe a cushion was available to relieve the man's predicament and perhaps elevate the seat a little? No surprise that this was also stonily refused. When my friend began to reason with the receptionist, asking: "Are you a nurse? Because I am, and I'm sorry but I can see he's in distress," the receptionist merely glared.

"No, I'm not," she snapped. There was a further lengthy wait till a small cushion eventually materialised.

We can be in no doubt now that we are, as Lord Freud so tellingly put it in the House of Lords Welfare Reform Debate, "stock" to the Government and their cohorts, not real citizens with skills, integrity or a history of  hardworking contribution to the world outside their windows.

My friend asked how many other "customers" (not her word!) were already in with the HCPs, to give the man an idea how long he would have to go on waiting. She was told it simply wasn't possible to say. (Nobody ring the fire alarm, then!) My friend politely but firmly persisted. She said she could understand the need for confidentiality, but could the girl just tell her if she was next in? This was grudgingly granted. She was indeed next in the queue.

"Then can this gentleman go in front of me? He's in agony!" said my friend, feeling this was the least she could do to help.

This was sanctioned. Not with particularly good grace or any modicum of proactive help on the part of the ATOS staff.

When my friend finally got into the office for her turn, after another long wait, the HCP at the computer terminal was a nurse. The nurse looked goggle eyed when my friend began to explain the name of her condition. She knew none of the symptoms and effects but tapped incredulously away at the screen. She didn't know the medicines prescribed or their side effects. Luckily my friend had all this at her fingertips, though she expressed a little surprise that the great detail about her disease she had taken the trouble to describe on the ESA50 form, seemed not to have filtered through to the HCP.

The HCP said dismissively: "I don't even know what you're talking about," as she had to have the name of my friend's condition spelled for her to type in.

"But I put all this down in detail on the form..." my friend began.

"Oh, WE don't get that." sneered the HCP impatiently. As if!

After hearing all about the illness, the ATOS woman concluded the appointment with: "I can't help with this, you'll need to come back again and see a doctor."

So my friend has to undergo a similar ordeal again in a couple of weeks, this time with a doctor ATOS HCP. Instead of this nurse ATOS HCP. If they'd actually bothered to read the form, and it wasn't just floating round in the ether for postal staff and/or Job Centre Plus non-HCPs to disregard, maybe this double ordeal could have been avoided.

But that's not the object of the exercise, is it? That would smack of respect and businesslike good sense, even compassion. And that, by all accounts, is disturbingly thin on the ground.

Meanwhile my friend is still more upset about how that other poor chap was treated, rather than herself. That's the nature of many "scroungers," "cheats" and "scum", you see. Genuine long-term illness changes us overnight from pillars of society to something the Government, media and increasingly society at large, believe they've just wiped off the sole of their shoes. I don't know how we ended up lying in the gutter, but nobody can stop us still caring, or looking at the stars.

Mrs Overdone overdoing it again! Know when enough's enough?

Sorry if this post sounds a bit disjointed! (Or maybe that's a blessing!)

Today I'm rather sick to sit for long. My stomach is nauseous; ears ringing; can't tolerate much light or sound; wrists, arms, chest sore; stabbing pains in my hips; palpitations; burning and shivering; tender glands; voice weak and absent at times. Can't concentrate to remember what I'm supposed to be doing from one minute to the next.

Slept until almost lunch time today. Slept a lot of yesterday too. Mum called in with lunch to make sure I got something to eat and to check I was OK blood sugar wise.

No wonder really. This is real payback time after the weekend.

I managed to finish filling in my ESA50 and sent it off last Friday. I had intended pacing myself to get it fully completed without need for haste, ready for the stated deadline 8th December. That's what the letter accompanying the form said. Then last Thursday another bullying letter from ATOS. Yes, I know it's routine, but it nearly imploded me from the shock. Thursday's "form" reminder to say they hadn't yet received the form stated I risked losing benefits if I didn't return the form by 1st December!! 1st December! Was this a mistake? A trick? My mind was racing. Thank goodness I'd made a good start already, but it still meant some rushing to finish.

I used the blank section of the ESA50 intended for you to explain if you are returning the form late. Only I said it wasn't late. I fully explained the effect on someone with a chronic illness where rest and pacing is essential, of having this sudden change of deadline in mid claim. I said if they didn't move the goalposts without explanation a second time, the form should be with them by the 1st. That may disqualify me immediately for being "non compliant" to their nonsense. At least I'll be going down fighting! I did add a "thank you," more in keeping with my normal courtesy at the end of this section. I know I'm not alone in finding their duplicity utterly infuriating.

That left less than the planned period of rest leading up to Sunday's long-established commitment to take the Advent service at my local church. I had a lift there and kneelers stacked on the pulpit seat to help support me to sit at times and still be seen from the back. I had members of the congregation doing all the readings and lighting the first Advent candle in the Advent Crown. I had my stick with me to balance for the prayer of dedication over the collection plates (even then, the stewards said they were worried I looked wobbly enough to drop them!) and for coming forward to the altar rail to share the words of blessing at the end of the service. I'd had all my words written down in case of brain fog meltdown and losing my train of thought. Even with all these props in place, plus a powerful radio mic, as soon as the service was over, I hadn't much voice left for greeting people on the door afterwards. I had to slump against the wall and then sit again to make it through.

As I've said before, although it seems frustrating to be able to do so little and so seldom, I'm just so thankful to do this at least, no matter what the cost in relapsing afterwards. I always seem to have just enough resources (not from my own strength, for sure!) to do what I believe I'm called to fulfil. People here know me and most understand a little more about M.E. now, so I'm very thankful for their support, love and help.

New friends, the daughter and granddaughter of a dear couple of friends in this congregation, were visiting from Scotland and came to the service. It was wonderful to meet them, if only briefly, after the service. My friends' lovely granddaughter is a young teenager who has also had M.E. since 2008. Now she is able to attend school part-time, even though I know it must be such a struggle for her at times. She must make her family so proud! It felt good for us to meet, with her lovely mum, after long comparing notes of our situations through M.E. via her grandparents. Like me, I think she finds writing a great outlet and a joy that can be enjoyed on days when more energetic pursuits are ruled out.

I had also been invited later to other friends' Golden wedding celebrations. Ideally it would have been on a day when I wasn't doing another huge challenge, but life doesn't come with pacing built in, does it? Anniversaries come when they come, don't they? All my friends at this beautiful event completely understood my health problems, and helped to make the day as easy as possible for me, including lifts, rests etc. After lunch we had a time of photos, laughter and reminiscences back at the home of my friends' daughter. I enjoyed every minute and treasure every second.

No wonder, though, that post-exertional malaise and all the attendant symptoms are now catching up on me with a vengeance. I feel like I've been running up Mount Everest while being run over by a steam roller! More than worth it, though. I'm just very thankful I've no other major commitments this week as I try to recover! Winter may be playing its part with wind and wetness, cold and chilliness making it more of a struggle to keep well. I'm constantly fighting viral symptoms at the moment. But there are happy memories to enjoy and so much to be grateful for!

On a world scale, there's more good news from Norway. After the encouraging trials of Rituximab in the treatment of CFS (however they are actually defining it), and their Government's apology to M.E. patients for the lack of awareness and treatment in the past, comes real positive action. The Norwegian Health Minister Anne-Grete Strom-Erichsen pledges 2 million krone to the two doctors involved for further research, as well as promising a national M.E. centre in Oslo!

If only sorry wasn't such a dirty word to the UK powers-that-be. Please catch up, UK! We're still here, struggling. Advent is a time of hopeful preparation. That makes my spirit sing with joy and celebrate everything around me as miracle and gift.  But medically, bodily, even pacing shouldn't justify the medical profession and politicians  keeping us waiting  for ever, if it's in their power and possibility to be faithful to those they care for!

Believing six impossible things before breakfast

"Alice laughed: "There's no use trying," she said; "one can't believe impossible things."
"I daresay you haven't had much practice," said the Queen. "When I was younger, I always did it for half an hour a day. Why, sometimes I've believed as many as six impossible things before breakfast."
-Lewis Carroll in "Alice in Wonderland"

Here is a letter that passed between Lord Freud, Minister for Welfare Reform and the Countess of Mar, the prominent advocate for M.E. awareness. Freud reply to Mar.pdf

It clearly states: "Therefore, for the avoidance of doubt, I can be clear that the Department does not classify CFS/ME as a mental health disorder."

Yet I equally clearly heard another male peer express as a fact that it was not known whether the disease was wholly mental or would one day be cured physically. This was during Monday's House of Lords discussions of proposed amendments to the Welfare Reform Bill (stopped myself typing "catastrophic" there - didn't I do well?). Apart from his giving no convincing or indeed any satisfactory responses to his noble friends' many probing questions, I did not hear Lord Freud or anyone else correct him.

So who will speak the truth in our own assessments with ATOS and the DWP? The silence is deafening.

In other news, I see M.E. biomedical researcher Judy Mikovits is likely to be released from jail tonight after being arrested last Friday on felony charges relating to her dismissal in September from the Whittemore Peterson Institute in Nevada.
Inmate Mikovits meets judge
When will the truth be heard in this distressing case?

I think as M.E. patients, we are getting pretty skilled at "believing six impossible things before breakfast". It takes practice, but we get so much of that these days. Hard to swallow like our swollen throats and glands. Hard to get our head rounds in the midst of brain fog. But practice makes perfect.

Jon Snow on Channel 4 News: new knight in shining armour for the hardest hit

Still struggling to fill in my "ESA 50" aka "Limited Capability For Work Questionnaire" and send it back to the DWP before December 8th.

Briefly stopped crying and dying inside at the humiliating catalogue of all that's wrong with me being revealed on the dreaded unhelpful and endless 20 page form (again!) as I watched the Channel 4 news with Jon Snow tonight. New benefit system dogged by 'endless appeals' Stopped sobbing to see the spectacle of masterful Jon Snow ripping at the flabby underbelly of Employment Minister Chris Grayling's defence of the slow car crash that is the Welfare Reform Bill.

"You could halt this reassessment failure now," Mr Snow pressed Grayling like a bulldog worrying a wasp.

At long last, instead of the BBC's propaganda and outright lies, Channel 4 tells it like it is. Pray God it's not too late.

Elsewhere today, Lord Freud in the Lords sounded like a smug puppet who had lost his script as other peers asked him questions about the Bill for which he had no answers. Again. Questions he tried to sidestep or in the face of which he seemed to be trying to hypnotise his opponents into a stupor with his whining, ingratiating but wholly compassion-free voice. Slowly but surely, the tide must turn. Mustn't it?

This on the same day Channel 4 News also revealed proof government plans to privatise NHS. Well done, Channel 4. A voice in the wilderness, calling for the proud and privileged to turn around at the brink of the precipice. A call for those in power to avoid another national disaster, the outrageous scapegoating of the hardest hit and most vulnerable citizens. A call to sort out these flawed Work Capability Assessments and prevent a return to the dark ages of stigma and more suicides for those wrongly labelled the "undeserving poor," left with no scrap of hope or means to face the future.

Thanks, Jon Snow and the Channel 4 team for helping me wipe the tears from my eyes and see more clearly again.

Back to the form. Courage. I can do this, whatever the outcome. Just knowing the truth is out there, whatever double speak and spin Big Brother Cameron chooses to put on it.

Here we go round the mulberry bush...

Landline rang this morning just after ten.

Hate landline as I don't know who it is till I pick up. So can't get myself prepared with necessary info. On landline I often end up gabbling like an idiot and forgetting what I need to say through brainfog. Plus it's usually going to be some telesales pusher who's got past the Telephone Preference Service filter.

It was the secretary at the Diabetic Eye Screening desk. Same one I rang last month after I received a letter to say I'd had an earlier letter inviting me to make an appointment at the Diabetic Clinic for screening. I hadn't had any such letter. This letter I did get, said records showed I'd not had a screening with an approved optometrist. I had; the ophthalmologist at the same hospital which the Diabetic clinic had themselves referred me to after picking up some retinal bleeds about three years ago. I've been going to this same optometrist regularly several times a year since that referral.

So I had rung a few weeks ago to ask if I needed screening as well. This same receptionist had said then that this had arisen because they had had a letter from my GP to say I'd been discharged from the Ophthalmologist back into the screening system. The bleeds had gradually healed themselves but, as I'd pointed out, I had just got a new regular appointment through for this week in Ophthalmology. The GP obviously knew of some mythical discharge letter from Ophthalmology that even they didn't know about, since they'd just called me for another regular check-up.

On Wednesday, at said check-up, I'd deliberately asked the consultant whether his tests, looking at my retina, the Optical Coherence Tomography and other tests still counted as my "diabetic eye screening" (how could it not?). But he said I still needed to see the diabetic eye screening guys. OK.

So, I dutifully stood corrected and rang the receptionist back yesterday to say their letter was right after all, and please could I make an appointment with their screening programme at the diabetic clinic again? She said she'd need to talk to the ophthalmologist's secretary, as Ophthalmology now had my notes, and she'd send me an appointment for early December.

Follow?  Me neither. But, "Patient Fully Compliant", in the words the pharmacist once wrote on a form when doing the yearly review of all my medicines. (Or "Fully Complaint" as she actually put!).

So today, this phone call from the receptionist. She apologetically explained that she had indeed spoken to the Ophthalmologist's secretary, who said that as I had an appointment in another four months with him, I did not, in fact, need to be seen by the Diabetic Eye Screening as well. That would be just doubling up all the tests. As I'd thought from the start. There's a limit to how many duplicate photos of the back of my eyes they actually want!

Confused? I began to think maybe for a change I'm the only one who isn't.
Common sense told me from the off that the Ophthalmology was doing the lot now (remember it was the Diabetic Clinic during routine annual screening that referred me there originally!)

But common sense is no match for expensive computer systems that seem unable to pass a message from one hospital department to another in the same building. Common sense is a stranger when consultants say one thing while their secretaries struggle to follow what should really be happening.

Common sense isn't worth a bean in the tide of automatic mailings, wasted phone calls, paper and time. When the GP seems to be getting paperwork that bears no relation to what's happening up the road in the various hospital departments and clinics! We wonder why there's no money in the N.H.S.!

At least after hours of waiting, the consultant found no oedema in my retina after ultrasounding it in the O.C.T., in spite of some further deterioration in my vision this time.
It's crashed me M.E.-wise but retina-wise, not doing so bad for my three decades with diabetes!
Now just waiting to hear from Cardiology...

Hypo versus Heart Monitor in the wee small hours!

Starting to ignore some more minor heart flip-flops through the day as I don't want to run out of diary or look like a hypochondriac if this this turns out to be "normal" arrhythmia I'll just need to put up with!

Documenting most of them, though.

Boy, these attached electrodes are pretty heavy duty! Woke at 3.45am bathed in sweat, rigid, jerky, disorientated. My PJs were visibly saturated with hypoglycemic fight-or-flight sweat. I'd already had a little sugar and carbohydrate to raise a borderline 3.9 BG before bed to stay safe. It was then up to 8.8 so not entirely happy it did one of it's periodic plummets just a few hours later. A BG test winked an alarming 1.5 in the dead of the night. Not so alarming to me, after all these decades. I imagine professionals would have me whipped into hospital or at least have paramedics at hand if they saw the same, going by the book.

I had more jelly babies (instant sugar fix kept handy wherever I am.) Then crawled down for a couple of plain digestives (20g carb). I was so wet from hypo sweating I was totally amazed the heart monitor electrodes were still attached so firmly and not washed away in the drenching! By then I had gone from sweating to shivering, sore and even more trembly and jerky. That's when I'm "normal" with M.E.! I remember being most concerned not to let the heart monitor drop when trying to manage the emergency drill. I suppose that's why the NHS is right to put faith and funds into a piece of equipment which can cost £1,900 according to this site: BMA Medical supplies LifeCard CF Holter Monitor !

Slept a little, exhausted, by dawn and now feel like death minimally warmed up. I do think it's perhaps the best thing that could have happened, though, on sober reflection, as my heart flip-flops its way through the morning. These palpitation symptoms, along with the accompanying odd, faint, nauseous feelings at times, were relatively unnoticed apart from maybe imperceptible racing during the worst of the hypo. My chest only resumed giving its little flops and "electric" tickles in the aftermath.

At least with the Holter monitor in place, it may actually be possible to get to the bottom of these problems.
It goes back tomorrow to the local Cardio department, so need to rest up properly after all that lonely early hours drama. Need to save up some energy "spoons" to be able to get through that plus a diabetic eye screening tomorrow afternoon. One return bus journey only for the both, so still think that's another fortunate turn.

Maybe at the end of all this, we'll actually have a Cardio/Diabetic/ M.E. understanding vibe going on. Or maybe the light-headedness has made me even more stupidly optimistic than usual!

Have a heart! Yes, I do!

Well, I definitely DO have a heart. It's official!

Had my echocardiogram this morning at hospital, followed by being fitted with electrodes and the 48 hour ambulatory heart monitor (Holter tape).

With M.E., just making the bus journey at a fairly crowded, early time of day was more stressful than the whole hour long visit to the quiet, restful Cardiology suite! I was shivering cold on the journey in, sickened as usual by the motion, noise and light, my body struggling to regulate its temperature. But the journey is only ten minutes, so I'm very thankful for that! As usual, my mum stayed over to make the trip with me, helping by carrying bag, stick, coat and cardigan when needed! She really is such an angel in every awkward health situation. (Not to mention saving the taxpayer endless money in Carer's Allowance/DLA as she appears when most needed and asks nothing but love!)

On arrival at Cardio reception we were shown into the waiting area. Only two male patients waiting to be seen before me, so managed to spend the time resting and recovering with my eyes closed mostly.

Only about ten minutes after my appointment time, I was called in for the Echo. The lass operating the equipment got me to strip off above the waist while she got ready with another young woman at a computer screen outside the curtained-off couch and echo machine. Sporting my fetching hospital gown, (soon unlaced again to allow access to all areas!), I was to lie on my left side on the couch, right hand resting on my legs, left supporting my head.

By now, to be honest, my head was spinning a bit. The most difficult thing was probably maintaining that slightly uncomfortable positon without giving the impression my unsteady discomfort was in any way attributable to the very capable and efficient echocardiographer! I managed a few jokey comments along the way, but spent most of the time with my eyes half closed trying to put all my energy into maintaining my position and keeping still and quiet for the scan (i.e. without twitching or keeling over!)

This was the standard Transthoracic echocardiogram. It was a cold autumn day for icy gel to be applied, so a good connection would be made between the hand-held transducer and my hot little chest!  My muscles are so sore with the M.E. that the first contact with the business end of the transducer was rather painful. I was honest about it when the operator asked, but assured her it was me being tender, not her being heavy handed! The high frequency ultrasound waves pinged through my upper chest before the transducer was moved to underneath my left breast in several positions to view the heart from different angles. These sound waves bounced off the hidden corners of my heart. The glugs and roars audible from time to time convinced me it was still beating!

Then I hauled myself back over onto my back and the transducer moved to the top of my stomach/between my breasts and finally onto my neck with raised chin. These last few places are the ones where my current palpitations are most often felt. I must have had 3-4 heart "skips" during the whole process. No idea if these showed up or not till I see the consultant again.

Then this part was over and I cleaned up the copious amounts of jelly from my torso. Only need some custard to go with it, I joked feebly. I found the bit I'd missed near my throat when I put my jumper back on. I could see the missed gel seeping through then, as if I'd dropped my breakfast down me!

Back into the waiting area where my mum was sitting like a pack horse under a mound of my cast off belongings and outer clothes necessary for a cold draughty bus ride. She was talking to the wife of another patient, similarly burdened by her husband's outer garments while awaiting his return from the land of mysterious beeps.

 A few minutes and I was called into another side room for the fitting of the 48-hour heart monitor. You can see the equipment used, if you haven't had the joy of this procedure before, in the accompanying photos in this blogpost.

The lovely nurse who called me through fitted the electrodes while another younger nurse helped to explain and do the paperwork. They were very helpful indeed. Although the department normally asks for the monitor to be disconnected and returned to Cardio Reception between 8.30am-9.30am on the third day, because I have a diabetic ophthalmology appointment on Wednesday afternoon, they were more than happy to let me drop the monitor off later when I'm in the hospital for that. This was such a blessing and relief, as it means two sickening, exhausting bus journeys saved in the same day which would have probably knocked me out for the rest of the week.

I've got a spare set of electrodes in case the originals get wet or detached. I've an A4 sheet ruled as a diary to record date/time/activity/symptoms. Whenever I feel the palpitations, or any breathlessness, dizziness/faintness or chest discomfort, I simply record the time and symptom in the diary, also pressing either the yellow or green buttons on the monitor to make it easier for those analysing the tape to spot the relevant moments recorded. All simple. Even the electrodes are colour coded in order of placement on the body - like traffic lights. Red on the left lower chest side, yellow on the upper right chest and green on the right side of lower chest. Even having trouble with telling your right from your left, the diagrams should keep you ticking over!

The actual monitor itself is as light and small as a mobile phone and clips easily onto the waistband of trousers, skirt etc. The wires tuck away discreetly and the electrodes itch from time to time but are hardly noticeable.

I'm completely frazzled now. Hardly surprising! All this and a phone call on my return, from a good friend not seen since I was working full time as a minister on the South Coast has left me struggling to put one finger and thought in front of the other. There'll not be many "activities" on my diary page for the rest of the day, I reckon!

I'll keep you posted! They'll book me a follow-up session with the cardiologist after the monitor's returned on Wednesday. Hope this'll help reassure anybody going through similar.

The tragedy behind the casual cruelty of the WRB: R.I.P. Mark and Helen Mullins

The magnificent Sue Marsh of  Diary of a Benefit Scrounger was on TV tonight. Sue explained in her eloquent, passionate words exactly why it is vital that people hear the real human needs masked by the current tide of disability hate kindled by the BBC, the tabloids and broadsheets and by politicians across the board. Why the Welfare Reform Bill being bulldozed through by the Coalition Government is no more "fit for purpose" than so many genuinely sick and disabled citizens are, in spite of the flawed processes of ATOS and the DWP, realistically "fit for work".

Nobody can see what it might have cost Sue in health even to make it to the studio. Or the effect her efforts might have had on her own health afterwards.

Sue Marsh: Is Everyone Entitled to Welfare? on 4thought TV 

I left a comment about Sue's inspirational segment on "Is Everyone Entitled to Welfare" tonight (8.55pm Channel 4 8th November 2011)  on the 4Thought TV site:

"Sue summed up so well the real, urgent plight of those who are genuinely disabled and totally dependent on benefits for day to day survival. 1 minute 44 seconds seems short airtime to counterbalance the media's increasing bias against welfare recipients, but Sue made every second count, so thank you so much. The suicides in Bedworth announced today are a tragic illustration of the chilling truth behind Sue's words."

The suicides I refer to are unlikely to make the national news.* It doesn't suit the propaganda machine to reveal that a good, conscientious, loving couple like Helen and Mark Mullins from Bedworth near Coventry, felt they would rather die side by side then continue to starve and freeze. Or to be classed and branded on national TV as scroungers and pitiable parasites.

The propagandists would like you to believe most benefit claimants drive Bentleys, sail yachts, have houses abroad, swing the lead, or act like wheelchair using Andy to a duped carer like Lou in a warped sketch from some private "Little Britain".

Mark and Helen didn't even have a fridge or freezer. They made the handouts from a soup kitchen, to which they weekly trudged six miles on foot, last them all week, warmed up on a one ring stove. 

Bedworth 'suicide pact' couple found lying side-by-side 


Helen was told she could not work by Job Centre Plus. The DWP equally maintained she could not qualify for incapacity or disability benefits. Quick to cut and pronounce. Blind to suffering. Slow to plug the leaky gaps in their own systems that let the icy winds of poverty blow through the lives of innocent, vulnerable citizens. Numbers and tick lists instead of names and real people like Helen and Mark.

Please take a couple of minutes to listen to Sue. Then hear Mark, with Helen at his side interviewed last year when they had been stuck in the system without help for more than a year already. They do not strike me as people who were eager to beg or wheedle. So they chose the only other way they could see out of a Catch 22 situation. Tragically they are not alone. Nor will they be in future.


The uncertainties of inhabiting a human body means that anybody, even the most smug and self assured, may tomorrow find themselves in an identical dilemma.


Please reflect before you glibly dismiss millions of your fellow human beings as less than human and so beneath your contempt and concern. This tragedy is a memento mori for all who think themselves immune from sickness or crippling downturns.

Today self reliant and smug. Tomorrow a statistic in a bureaucrat's closed file.

* Update: 9th November - I apologise that I was wrong that this would get no national coverage. The story was actually picked up today by the Daily Mail Army Veteran and his wife die in tragic 'suicide pact' after becoming 'too poor to live through the winter'
and tonight on the Channel 4 news.  

Ricky Gervais using Humpty Dumpty language?

“I don’t know what you mean by ‘glory,’ ” Alice said.
    Humpty Dumpty smiled contemptuously. “Of course you don’t—till I tell you. I meant ‘there’s a nice knock-down argument for you!’ ”
    “But ‘glory’ doesn’t mean ‘a nice knock-down argument’,” Alice objected.
    “When I use a word,” Humpty Dumpty said, in rather a scornful tone, “it means just what I choose it to mean—neither more nor less.”
    “The question is,” said Alice, “whether you can make words mean so many different things.”
    “The question is,” said Humpty Dumpty, “which is to be master      that’s all.”
    Alice was too much puzzled to say anything, so after a minute Humpty Dumpty began again. “They’ve a temper, some of them—particularly verbs, they’re the proudest—adjectives you can do anything with, but not verbs—however, I can manage the whole lot! Impenetrability! That’s what I say!” <sup>*

Just reading an article in today's online Guardian Culture Section Ricky Gervais: "Bring on the Haters"

How like Humpty Dumpty's stance on semantics Gervais' own perception of the controversy over his use of certain offensive words is.  


I'm not a "hater". I've probably cried with laughter at "The Office" as much as anyone. But I know the "in real life" derision and misperception fostered by his previous jokes about M.E. He joked at one stand-up show how he'd seen someone collecting for M.E.:

-M.E.? Not MS - not the crippling wasting disease. No, the thing that makes you say 'I don't wanna go to work today'.

There was a genuine M.E. sufferer in the room that day. She had to endure the humiliation of the whole room applauding and exploding with laughter at what was, whether Gervais would admit it or not, her expense and the expense of all M.E. sufferers who face the very ignorant attitudes being celebrated and reinforced in the said joke.


Then, recently, we have the outrage caused by the comedian's latest tweeting of an offensive word used to belittle people with Downs Syndrome. Gervais claims he has it on his own authority that the word has changed its meaning. 

Many have challenged him. Yet even in this latest article, all but the brave mum of two disabled children with whom he deigned to discuss the matter, are now labelled as his "haters". Again he paints himself as the hero and victim of the sphere where he dreams he has rewritten the rules of meaning. A tiny world focused away from empathy, compassion and any sense of connection with the lives of others more vulnerable than Mr Gervais.


As his new series' title says: "Life's Too Short".


Life's too short to forget your humanity and the responsibilities that go hand in glove with the rights of free speech. Otherwise, you're just like Humpty Dumpty in his sneering superiority that a word means what you "choose it to mean - neither more nor less". Life's too short to forget that words belong also to the hearer once they are spoken or written. Every mystified, indignant Alice can challenge you then. You can go on believing your own propaganda of course. But it doesn't save you from falling off the wall.</sup>

Panorama "Britain on the Fiddle": Straining out a gnat and swallowing a camel?

I was so incensed at the biased and inaccurate Panorama "Britain on the Fiddle", aired tonight 8pm BBC1, I sent a letter of complaint to the BBC.

BBC1's Panorama: "Britain on the Fiddle" 8pm 3rd November 2011

I was too sick to complain after John Humphrys' grievously patronising and offensive program on a similar theme last week. I used the few spoons I have left today to speak out. After all, the only thing needed for evil to triumph is for the good to do nothing. I'm not good, but evil mustn't be allowed to thrive unchallenged like this on national TV.


It breaks my heart to read all the despairing, hurting tweets, blogs and sobs from fellow disabled citizens of Great Britain on the social networks tonight.


We still have each other, and knowing others are in similar situations of being falsely branded cheats and fiddlers is something that keeps me strong in dark hours like this. My dander is well and truly up! Me and millions like me, eh?


This is what I said:


To: panorama.reply@bbc.co.uk


Subject: Re : Britain on the Fiddle, 8pm-9pm, BBC1 3rd November 2011

Panorama tonight (“Britain on the Fiddle”) was a travesty of all that I believed the BBC stands for.

Do we pay the extortionate license fee in order to have your so-called researchers peddle the government’s propaganda against the sick and vulnerable?

Does our license fee buy us the privilege of sitting through the drivel honed to incite disability hate crime I saw tonight and last week with John Humphreys’ appalling contribution to the anti-disability jigsaw you and such as the Daily Mail seem set on perpetrating?

I am incensed that such lies go unchallenged on this prime-time programme. I am disgusted that it is left to ordinary viewers such as myself to point out the errors here.

Who convinced the BBC to make another programme about benefit cheats? Did the DWP tip you off to a handful of cases so you could strain out a gnat and swallow a camel? We all know such people exist and agree, of course, they should be dealt with. What has kept them unchecked at liberty till now but slack and self-serving government departments?

However, sickness benefit fraud, according to the DWP stands at 0.5%. It isn’t “on the rise”. Of the £22 million lost by the government to fraud and error, only 4 million is accounted for by such cheats. The remaining £18 million is , as I understand it, lost through the errors and incompetence of the departments administrating benefits themselves. The government overpayments are costing the country more than sickness and disability benefit fraud put together. When can I expect to see your expose on that? Given your obvious bias and spouting of coalition propaganda, I am not holding my breath!


Am I to take it my license fee pays for you to choose to ignore real issues like this, in order to make Mickey Mouse knee-jerk programmes like this, which serve only to fuel unwarranted contempt, indignation and hatred against innocent citizens who have fallen prey to life-crushing disabilities and unemployment through no “lifestyle” choice of their own?

The cases you so gleefully paraded on this disgusting excuse for investigative journalism are, as you wholly failed to emphasise to your viewers, rare and extreme.

In the wake of your “documentary”, which documents nothing but your Corporation’s forelock-tugging to the powers that temporarily be, the 5 million disabled people who fight every day not only against the humiliating odds stacked against them in this weakest-go-to-the-wall society, but increasingly against the misrepresentation of their situation you are currently churning out to your ultimate discredit, are prey to terror they have neither courted nor deserved thanks to your casual cruelty.

I hope you feel no satisfaction in sinking to this level. I trust when one day you or yours are trapped by genuine disability and unable to escape into these fairy tales of Britain en masse “on the Fiddle” (the clue is in your title that this is exaggeration and, frankly, something far short of the truth we once trusted you to broadcast), you will not regret the degree of hatred you have fostered for people just like yourselves.

Disgusting. Shame on you, BBC.

Just received the automated response from Panorama. Sadly, the reply they promise if my email "requires a response" will be too late. The programme is now out there. The damage, distress and grief they have caused are spreading like ripples in a poisoned pool.

I hope they can sleep. I'm not sure I can, insomnia, discomfort or not.

 

Shhhh! Do you want to know a secret? We all do!

The Official Secrets Act: strange bedfellow for M.E./CFS?

This disease has robbed me of my prime of life: why do you want to keep me in the dark? 

So much for the Hippocratic Oath. So much for integrity! 

The lunatics have taken over the asylum!

The disgusting corporate secrecy about M.E.

I've just reread this information from Invest in M.E. after quite a while trying to save spoons by not reminding myself of the depth of the baffling injustice here. There's still a dent in the wall from last time I read it! Nothing's changed.

Tweeting with a friend about it today, I realise I am no nearer to having an explanation.  Why this sickening, perverse secrecy about the physical illness that has robbed us all of chunks of our lives and left us prey to every sling and arrow from the disability haters and arrogant welfare reformers who believe their arbitrary time limits can spirit away "chronic conditions" that medical science has yet to cure?

Why oh why do the Medical Research Council even have "secret" files on M.E./CFS? How can they possibly justify sitting on them, invoking the Official Secrets Act, till the 2070s? It's like something out of James Bond, only without the glamour and blockbuster theme music! I am still shaken, and very much stirred.

This article points out that the secrecy seemed to begin when the discredited psychiatric lobby came to prominence with their touting of CBT/GET to torture us and convince the world we are malingering fugitives from bedlam and the workplace.


One alas-not-so-secret document quoted, the 2007 NICE Clinical Guideline, trots out the old CBT advice: " “The first duty of the doctor is to support as much useful function as possible and avoid the legitimisation of symptoms and reinforcement of disability”.




You don't need to "legitimise" what was never illegitimate in the first place! Life-crushing disability descended willy-nilly without any need for reinforcement!

 I can only conclude that, as the psychiatric lobby realised with rising panic and horror that bio-medical science was about to reveal the organic multi-systemic autoimmune mechanisms in M.E., so consigning their frankly flawed analysis to the dustbin of historical dead ends, they marshaled all their weapons to keep the "truth" in their pockets.

☞ Hence Simon Wessely's flirtation with with stardom as darling of the press this summer. 

☞ Hence the mockery and disbelief that seems still to be sanctioned about the illness.

☞ Hence the postcode-lottery-think-of-a-number-and-double-it Russian Roulette we face of getting health professionals who even understand, let alone help and treat us in an enlightened way

☞ Hence the obscene clampdown on these unseen M.E. documents until most of us are conveniently dead and beyond redress.

Disclosure would not suit the egregious oafs who refuse to back down, apologise or admit they were wrong or minimise all the damage they have caused to so many for so long.

Or am I wrong? Have you a different explanation? Have you a fresh insight on this? I'd so value hearing from anybody else who perhaps can throw any further light on this, or just needs to express what they feel about it.

"The law is a ass - a idiot!" says Dickens' Mr Bumble in Oliver Twist.

The law is erring on the asinine side here, I suggest. But what do I know?


But time's not on my side. And, perhaps mercifully, I won't get a chance to "only live twice!"