Wesselygate: Heroes v Bullies = No Contest!

I'm always inspired by so many stories of humour, resilience and courage in the face of illness. Not least today.


Harry Moseley, the amazing 11 year old Birmingham lad with an inoperable brain tumour who's been giving all his energy since diagnosis to his campaign Help Harry Help Others .

I first heard of him when I rejoined Twitter this summer. He sells wristbands to raise funds for Cancer Research UK. Harry has gained friends, celebrities, kids just like himself, adults who admire his fighting spirit and optimism - and that smile! - all over the place.


As I write, Harry's Mum and family are facing the agonising wait of the results and prognosis for Harry after an MRI scan yesterday. Harry has not opened his eyes since surgery two weeks ago today, but remains responsive to stimulus from his Mum, as she encourages him with the prayers and well-wishes of his Twitfam as he calls us all. What an inspiration through the darkest times!

Also today, my friend's lass Jenn is doing a sponsored skydive for the local Barnsley Multiple Sclerosis Society in South Yorkshire. She herself has courageously battled with MS for the past six years, remaining determined and resilient in finding ways of raising funds. We're right behind her (or underneath, today, considering the altitude involved in her dive!) as she is nearing her target of £1000 and stepping out of that plane!
Jenn's sponsor page for Barnsley M.S. 

One of the most challenging parts of living with Myalgic Encephalomyelitis, for me, isn't coping with the multiple disabling symptoms. Not the pain. Not the exhaustion. Not the disrupted sleep. Not the discomfort. Not the brainfog that makes me sometimes act or sound not like myself but somebody losing their faculties! Not the inconvenience and bereavement of having to reframe my former chosen path to walk a new road. I can find all the gratitude and attitude for those things.


No, what's the challenge for me, is to face the everyday mockery and disbelief of those who think they know more than us about our illness.

To face the uncertainty of the research and the future of recovery when so much is expected and so very little delivered.

To face the well-meaning but frankly patronising comments from those I thought now understood more about me and M.E.

To face the withering, mystifying onslaught of misinformation on TV and on national and local radio, in the press, seemingly everywhere.

To face the chipping away at my whole personhood and place in society. To know some consider this hell a cushy "lifestyle choice." These days I even find myself wondering how people see me and what they actually think when they encounter the me they see from outside.

This is a challenge I'm so determined to meet. To spot the heroes and recognise the blustering bullies who try to usurp their place on the podium! Not with the anger and grief that well up at the injustice of being derided and scorned as well as being genuinely ill. But to get past that, to hang on to my humour and graciousness, laughter and compassion and courtesy in the face of it all.

To hang on for dear life to the bigger picture where the truth shines clear and I have a choice not to be dragged down into bitterness or wallow in self pity. I've managed so far through all these years of M.E., and I'm darned if a school of thought with its own vested interests, no matter how bullying and big it is and how loud its mouth and its clout, is going to bring me down now.

We have lots of real heroes in the field of M.E., too.

The scientific researchers who are evidently doing all that they can in the face of what is now showing itself up as staggering, spine chilling opposition and schoolyard bully spoiler tactics! Doctors and health professionals who do the real work of informing themselves, keeping up to date with research and trying to do the best they can for their patients. Other sufferers who keep us informed, encouraged and entertained when the picture would otherwise look blank or impossibly dark; bloggers, tweeters, Facebookers, IRL heroes who bring us hope.

These M.E.heroes are not hard to find (I have a list of some bloggers who inspire me, in the sidebar to the right, if my dodgy sense of direction hasn't deserted me!) if we look for them and don't get distracted by the headlines. Even though they may not be invested with the power of other dominant characters to get their voices heard! Talk is cheap.

I'm rooting for Harry, and Jenn, today, and all who are fighting so inspirationally, young as they are, for their illnesses to be better funded. 

 One day, we'll be able to name the illness we're fighting for, too, and faces will not go blank with ignorance, distrust or open hostility. Then the fight can go on being for the funding and the endgame. Not for the most basic awareness! 

Meanwhile, as we find ourselves still in this tunnel of controversy, the fight is also to keep from self-destructive hate and loathing of ourselves and others, or becoming paralysed by despair and cynicism. We need urgently to hang onto hope, not in some projected future utopia, but right here and now in the scratchy bedsheets and blaring sensory overload of our lives with M.E.!

shouty opinions, get you down or stop you being who you still are deep down inside!




Let's fix our eyes on the heroes who inspire us. With dignity, honesty and compassion we can grasp the facts with hope and determination, so we can do our part as well as we possibly can. Then those bullies will gradually slip back into soft focus where they belong! 


Invest in ME

M.E. Association

M.E. Research UK 

Whittemore Peterson Institute for Neuro-Immune Disease 

I don't know why I've got M.E. (NOT an ode to Simple Simon!)

I don't know why I've got M.E.

It can't be accidental.

Now Simon Wessely smiles his smile

And says it's mostly mental.

I used to do all sorts of things

Working, playing, thriving.

But these days I am just so sick

I'm only just surviving.

Those flu jabs and those viruses

They always made me ropey,

For weeks and months I used to feel

So iffy, crashed and dopey.

I drove myself to carry on,

So much still to achieve,

But some days I'm too weak to walk.

My sickness just won't leave.

It took an age to diagnose,

It took so long to name.

Now there's a brolly called CFS,

Which isn't quite the same!

They sent me off to talk it out

They called that CBT.

The exercise that made me flop

Was GET, you see.

On days when I can make some sense

Inside my foggy brain,

I try to raise awareness.

Simon says I'm not quite sane.

And every time I do things,

Simple stuff I used to manage

With minimum of effort,

Causes untold pain and damage.

My limbs are sometimes cold to touch,

Or burning like a fire,

Simon says it's in my head,

I'm just a workshy liar.

The words I used to work with

In my ministry and writing

Go AWOL as I try to think.

My energy? Gone like lightning.

My muscles twitch and tremble.

When I walk, the ground's like rubber.

Nausea's now a way of life,

Yet I'm some benefit bludger?

The floor that once seemed smooth and flat

Is now like mountaineering.

A blowtorch must have scorched my eyes,

Strange ringing dogs my hearing.

I'm bruised from walking into things

I'm crushed from all I've lost.

They're sure it's biomedical

Yet Simon won't be crossed!

He has his little theories

He cooked up years ago,

But science is making progress,

What the heck does Simon know?

The papers give him headlines,

The journos lick his boots.

Is it our paranoia

To suggest they're in cahoots?

The powerful health insurers,

Drug companies, MPs,

And NICE which isn't nice at all,

Who lives in a myth like these?

Often M.E. gets my body down,

But I won't lie down in spirit;

Some day biomarkers will mark our cure.

That's worth the wait, now, innit? 

Till then, we've got each other, guys,

To help keep a positive smile on.

One day our brains will be free of fog,

And the likes of Simple Simon!

Simple Simon Says: Sing-a-long-a-Graded ExerciseTherapy?

Hope this might bring a smile to your day.


It popped into my head as I wrote the previous blog post and thought about the untold damage a certain Simple Simon is doing to all the M.E. community with his media shenanigans.


This little song was all the rage when I was a kid and got to number #4 in the UK charts back in 1968.


Perhaps the original inspiration for the Wessely School version of GET for M.E.?

LYRICS: I'd like to play a game that is so much fun
And it's not so very hard to do
The name of the game is Simple Simon says
And I would like for you to play it too

Put your hands in the air
(Simple Simon says)
Shake them all about
(Simple Simon says)
Do it when Simon says
(Simple Simon says)
And you will never be out

Simple Simon says put your hands on your head
Let your back bone slip Simon says
Put your hands on your head
(Simple Simon says)
Bring them down by your side
(Simple Simon says)
Shake them to your left
(Simple Simon Says)
Now shake them to your right

Put your hands on your head
(Simple Simon says)
Bring them down by your side
(Simple Simon says)
Shake them to your left
(Simple Simon says)
Now shake them to your right

Now that you have learnt
To play this game with me
You can see it's not so hard to do
Let's try it once again
This time more carefully
And I hope the winner will be you

Clap your hands in the air
(Simple Simon says)
Do it double time
(Simple Simon says)
Slow it down like before
(Simple Simon says)
Ah, your looking fine
(Simple Simon says)
Now clap them high in the air
(Simple Simon says)
Do it double time
(Simple Simon says)
Slow it down like before
(Simple Simon says)
Ah, your looking fine

Don't try this at home!
Doing it in double time may, in fact, damage your health!
Hope this may help to keep you smiling through your bad days!
You're not alone!

The Stigma of M.E. : Daily Telegraph's silly season gets sickeningly serious

'Protesters have got it all wrong on ME' by Max Pemberton in today's Telegraph

So, in spite of false hope over the weekend that this piece of dangerous misinformation had been withdrawn, it appeared in print to rain on the parade of thousands of M.E. sufferers this morning.


When I could get my thoughts together, I respectfully tweeted Max Pemberton earlier:

@MaxPemberton 'ME & stigma of mental illness' I compliantly attended CBT/GET til the OT recognised I was (quote) "Really ill". Still v sick

Many more reactions and comments also appear in response after the article. These restore perspective to counterbalance the depth of ignorance shown here. Sadly, the headline is what many people will register as gospel truth: in shorthand, that M.E. = mental illness.

Middlewood Hospital, Sheffield, formerly South Yorkshire Asylum, more recently near to site of Fairlawns M.E. Clinic

Worse still, though I fully support removing every last ounce of whatever stigma remains for those who live with actual mental illness, this article implies I am ashamed to be associated with mentally ill friends! How is this even legal? M.E. patients are only horrified to be labelled incorrectly, to be denied hope of a future restored to the vigorous individuals we were born to be!

Max Pemberton blithely informs us:

The biggest hurdle faced by doctors is persuading people to actually attend and engage with treatment. They resist because they refuse to be seen as mentally unwell. It does seem bizarre that those with such a debilitating disease would refuse treatment because it was given by a psychiatrist. Most people are more than happy to be seen by a specialist – more than one if required.

I was offered both CBT and GET back in 2006/7 when I was first diagnosed with the illness I had been fighting on and off in boom/bust fashion for more than a decade. My GP said she had sent several patients like myself to Fairlawns in Middlewood, Sheffield, to their M.E. Clinic there. I suppose she was at a loss to offer anything more than a dose of amitriptylene to help the highest dose of painkillers to work. She would perhaps, on reflection, also have been advised to help these Government funded M.E. clinics justify their existence?

Fairlawns Medical Centre, Middlewood Road, Sheffield, with Fairlawns M.E. Clinic, part of the Sheffield Polyclinic

CBT and GET were not mentioned, by name, during my referral to the clinic. I went along compliantly to every session with the Occupational Therapist at Fairlawns M.E. Clinic on Middlewood Rd, Sheffield.

Middlewood is still synonymous in South Yorkshire with old Middlewood Lunatic Asylum, Wadsley, that our forebears knew. But I didn't resist, as this was surely merely a modern M.E. clinic based in the same location. I certainly felt no stigma. I was relieved to try anything that might help me to bear the barrage of disabling bodily symptoms which now frequently confined me to bed or to the house.

The OT received me in a room with helpfully muted lighting. She quickly realised I knew much about coping with chronic illness, from a quarter century coping with erratic hypoglycaemic attacks from Type 1 Diabetes.
 

She learned how I was a resilient, adventurous, successful, popular Methodist Minister. Before ordination I had been a schoolteacher and had later become the first English Methodist mission partner to live and work in Bolivia, South America in the early 90s.

The Fairlawns OT discovered how a long bout of giardiasis had derailed my health during my time in Bolivia, after which I was never quite the same. (I've read since that giardiasis was found in a quarter of US M.E. cases here though have no way of knowing if the link is significant in my case.)

Daffodils in Middlewood Park, looking towards Fairlawns Medical Centre

The OT listened how on my return from working abroad, I continued to work often long hours 24/7 after training at Cambridge in theology and for the itinerant ministry, and was ordained in 1999.

In 2000, still putting my frequent crashes into M.E.-like symptoms down to my severe diabetes, erratic since my diagnosis in 1984, down to my body's regular bad reaction to the recommended flu jab each autumn, down to frequent viral infections, I succumbed to the first of three severe bouts of shingles in my head and neck. I was sick for months with M.E.-like disabling symptoms. My second shingles bout followed in 2004 and the third most recently in 2008.

Fairlawns ME Clinic main reception to Polyclinic, Sheffield

The OT began to understand, that although I completely willingly carried out every part of the suggested Graded Exercise Therapy, filling out the provided charts and talking things through with her on each appointment in true CBT fashion, it was doing me harm rather than healing, apart from the relief of having a professional "M.E. specialist" to talk to. To be clear, the OT explained the clinic was not actually offering a cure, but a coping/pacing strategy, such as I already used for diabetes.

They treated children and adults through the centre, she told me, though I actually rarely saw anyone else waiting to be seen in the gloomy corridor. My Mum, who supported me through each journey and afterwards when crashed, sat by the water cooler when I was in the session. She never saw any other patient either, sitting in the waiting room or being checked in on those long afternoons. Were the others always in the morning? I have no idea at all.

Another M.E. Patient's recent experience of Fairlawns M.E. Clinic, Sheffield 

It was I who called it CBT to the OT, eventually, as no doubt her instructions were not to affirm the patients illness beliefs or suggest any terminology herself to influence my progress or perceptions.

She accepted with sympathy and regret how ill and relapsed these trips out to Middlewood Fairlawns M.E. clinic made me. She wondered after several such draining sessions if just phoning or emailing might do me just as much good, as spending days bed bound after each session because it took me two bus rides and half an hour on the Sheffield Supertram to get to my appointments with her, seemed to be doing more harm than good.

She said that she could see I knew as much as she could tell me in terms of understanding my condition. 

She seemed impacted by my description of my progress as like a tide coming in. The good days and the bad days (in reality just bed bound, housebound days, and self-styled "good" days when I could actually get around to do a little before my whole system was too enervated to carry on again, simply seen through the eyes of an eternally thankful optimist who refuses to moan!) 

She took on board how there were some days when the recovery seemed to come in slowly up the beach like a tide, yet the extra efforts made would then slide me back like low tide leaving me exhausted and in agony among the rock pools. Sometimes during a session she would see me struggling to function, to marshal my thoughts through the brainfog, to sit in the chair and cope with even the muted lighting. 

Once she actually exclaimed: "You really ARE ill, aren't you!" as if this came as a new revelation to her!

What does that tell you about how M.E. patients are perceived?

The so-called experts in these centres are told how CBT/GET is supposed to work, but when they are faced with the real patients, as intelligent and positive as they are, obviously not depressed or mentally ill, they still have to go through the motions and fill in their reports. Is this the truth of it?

When I was too ill to travel to my final session, the only one I missed, the OT sent my final 'end of treatment' report over from Sheffield to go on my medical records with copies for me and my GP. I was to sign my approval before it was finalised. There was also a feedback tick-box form, as I recall. I saw she had written that the "treatment" had been positive and had helped me, and that I was much better. This was far from an accurate reflection of my situation, as I thought she knew!

Sheffield Supertram bound for Middlewood

I wrote back a letter to my OT at Fairlawns reminding her what I had said about my progress through M.E, being not so much a linear improvement but a boom and bust, random tide coming in and out. Every bug I caught or effort I made could still scupper me and have me every bit as ill as before. The CBT was at best a comforting chat that was agonising to travel to. The GET was structuring what bits of activity I could manage at times, but were not achievable on other days, whatever my graphs and tick charts might say! 

It had been helpful to talk through coping and pacing strategies with an understanding professional. But it had not actually cured my illness in any way, any more than appointments with my diabetic consultants actually "cured" my diabetes. We could learn from each other, patients and doctors, but the diseases remained uncured. Neither diabetes nor myalgic encephalomyelitis is solved by these purely psychological interventions.

I would say there is value, limited as it is, in CBT, on the days, if there are such days, when you feel up to it. Others who are bed bound permanently and intubated would not even be able to contemplate such approaches, let alone benefit from them! Many tell of the deep damage that such approaches have done to their already fragile health, as they did to what little strength I had at the time. It cost more in post-exertion collapse than it helped in any way.

But suddenly, we are informed by Max Pemberton that:

It wasn’t until psychiatrists such as Prof Wessely started treating the condition psychologically that real progress was made. 

  

Some major brainwashing seems to have taken place here. Or maybe it's simply that headlines that have sensational death threats, hate campaigns, protests etc sell more rags than column after column of facts about scientific research or yet another story about one of these pitiable hypochondriacs who

"believe that their condition is the result of a viral infection or exposure to environmental toxins. Research to date has failed to support conclusively this hypothesis, much to the chagrin of sufferers, who feel frustrated and angry that doctors remain sceptical that this is the actual cause of the illness."

Another rehash of the same noxious fantasy Prof Simon Wessely continues to peddle. If this spoke of other races, the elderly, homosexuals or other groups in modern society, there would perhaps be well-trodden paths to protest how we are being so unjustly mocked and libelled.

There is now a growing undercurrent of robust rebuttals of this sloppy journalism and outright vilification of vulnerable M.E. patients. So there must be. From everyone who has a voice or a pen. Or we will find history rewritten in an unfamiliar typeface, using a language of contempt and denial we do not recognise.

 

M.E. in the Media: A Little Nut Who Held its Ground (Irony Intended!)

Wessely's "Mind the Gap" article in 'The Spectator' 27th August 2011 with many interesting comments

This was the upsetting, quite devastating article we woke up to yesterday. Just in time to celebrate a peaceful Bank Holiday weekend in the UK. More of Professor Simon justifying his position and earlier high-profile articles in the UK press.

August has been quite a month. It's often called "the silly season", isn't it? The summer news-slump when all sorts of wacky, weird and wonderful stories hit the headlines while the world is on holiday and needs a break from the heavy stuff?

For us who are genuinely sick with M.E.,who don't ever get a holiday from its devastating effects, this proved to be a bouncing bomb of a story, frisking along gaining momentum through August with poisonous and dispiriting ripples spreading out beyond the visible horizon. Some of us were reduced to tears. Positive, witty, resilient souls reduced to sobs of despairing shock. Not again? No more surely? Where will this all end?

On Twitter, on Facebook, and other social internet outlets, M.E. patients kept each others' spirits up and found ways, by humour or by putting together responses to the half-truths being perpetuated here and elsewhere, of seeing a way forward together. I am so thankful for the strength and gracious, clear-sightedness of other M.E. bloggers, Tweeters and like minded friends on the Internet. 


Some of the responses to Wessely's latest oh-so-reasonable, avuncular cant gave me solace. If you click the link above, there is even a measured response from another psychologist who has personally felt the sting of a backlash (Wessely's amorphous "death threats") from activists who themselves haven't got M.E. but use the frustration of M.E. patients abandoned by the medical establishment, as an excuse for unleashing their vitriol. Yet she still sees that Wessely's psychogenic aetiology model for M.E./CFS is essentially flawed from a scientific point of view.

Other comments bear witness to the professor's shortness of memory on treatments he authorised a quarter of a century ago, but in the article distances himself. Treatments to expose the "playacting" of a child with M.E. and the role his concerned parents allegedly played in perpetuating his illness. We are all aware that 'sectioning' of M.E, sufferers still occurs throughout the 'civilised' world.

Many of us have respectfully tweeted journalists jumping on the bandwagon. Pointing out inaccuracies. Pointing out poor logic. Begging for a bit of integrity and balance in these articles. I had no sooner tweeted Max Pemberton about his own deeply insulting and truth-bypassed article in the Telegraph:

@MaxPemberton: 'Many claim that their condition is the result of..' Patients make no claims.They're diagnosed! Shockingly inaccurate #mecfs

than the said article seemed to have been withdrawn. [Update: the article WAS published in the Telegraph on Bank Holiday Monday 29th August 2011]. Others within the M.E. community were also pointing out the factual errors in many of his words.

It was then that I learnt that a link is only good while the newspaper involved has the linked article available! Someone else on Twitter asked if I could point them in the direction of the Pemberton diatribe. I couldn't find it when I clicked my saved link to the Telegraph again! A bit like Orwell's Big Brother in '1984' rewriting history to suit the powers that be and leaving us wondering helplessly if we were just hallucinating. We can't afford, in the current hostile climate, to be tricked into thinking it's us who don't know what we're talking about! It's really NOT all in our minds!

We can be thankful, at least, that the Pemberton hackery stayed in cyberspace and did not go to print. [Update: Sadly, it did - Telegraph 29th August 2011]. For those who blinked and missed it, the wonderful team behind XMRV Global Action was clever enough to transcribe the article, before it was snatched from scrutiny, here:


XMRV Global Action's note of the text of Max Pemberton's article in The Telegraph "Protesters have got it all wrong on ME"

Maybe this isn't the best quote about our need for patient, dogged perseverance in holding out for a turn in the tide of true M.E. Awareness. 'Nut' is an emotive term, if anywhere near the Wesselyan lips! But through this long month of buffetings from the media, it made me smile and be even more determined to go on chipping away towards better awareness and better science for M.E.:

"The greatest oak was once a little nut who held its ground." ~Author Unknown

We must hold our ground. Peacefully. But with the most stubborn, unwavering determination and persistence. Nothing Wessely, or his sycophantic nay-saying echoes, can ever say or write will change the fact that M.E is a neurological, multi-systemic illness, needing much more of an organic scientific cure than a sticking plaster of CBT/GET.

We have truth on our side, and need to pull together with the little sparks of strength we can muster, against all these odds.

Lucretius puts it another way:

'The drops of rain make a hole in the stone not by violence but by oft falling.'

I feel like a drip or a nut this weekend. Don't we all? But the stone is not impenetrable and this little oak's still willing to struggle its way towards the clearing above. 

Links to various other responses to the articles:
 
The big issue: Extremism has no place in the quest to find a cure for ME

Professor Malcolm Hooper's full response to Observer reported in Dancing with the Sandman's blog today

Hanging on the telephone? Not any more!

Happy August Bank Holiday to friends, followers and visitors to my blog, both fellow spoonsters and spoonie sympathisers plus any casual passers-by who are very warmly welcome too.


Here in Yorkshire, England, we know the Bank Holiday Weekend's almost upon us. Here are the clues:

Rain - check.

Forecast of more rain - check. 

Cold enough to need a jumper - check.

Heavier rain - check. 

BBQs cancelled - check. 

Summer Music Festival fans bedecked in wellies and rainproofs - check.

Mates who are parents longing for the kids to get back to school - check.

Totally knackered with trying to do extra things in preparation for the rest of the world shutting down for said weekend - oh, sorry that's just me! (And every other PWME who's even well enough to do extra things for a moment in the first place!)

I know from all the years when I worked most Sundays and the occasional Bank Holiday in various jobs and vocations in my pre-M.E. life, how evenings, mealtimes and holidays themselves are often the very times targeted by phone companies to ring your number in the hope of catching someone at home.


So today, I'll pass on some of the best advice on getting rid of unwanted callers I've yet been given. Hope it may save you some spoons in the next few days or in the future!

It may help those of us who find it a difficult task to communicate clearly when put on the back foot, and may also help everyone else in modern society who wants saving from the tyranny of the phone!


In the past, just saying "Sorry, this is a church property..." had the effect of putting the most eager sales rep off their stroke, in my position. But it's not everybody's line of defence!


Since M.E., even ignoring the phone, as I often have to, doesn't always work. Why do certain people still ring the landline, where I can't screen them, instead of my mobile, where I can easily sort the wheat from the chaff? No matter how often I explain the difficulties?

This way is supposed to make those annoying phonecalls from any particular telemarketing company stop, as these tactics below will flip your number off their lists.


The Telephone Preference Service has definitely cut down on junk callers (and junk mail via its sister service) for me. But still some of what I call WEEDOs ("We(e)do not have the callers number to return the call") and WITHYs  (withheld number) manage to get through from time to time.


I used to say things like "Sorry, wrong number..." and put the receiver down asap when a call centre employee pronounced my rather obscure name incorrectly. Once I knew they didn't know me!

That only leads to repeated call-backs. But then I heard from a friend the way to end these energy-sapping intrusions for good.

THREE MAGIC WORDS!

"HOLD ON, PLEASE..."

You say this, put the receiver down off the hook, and don't speak again or let them know you are still there. Yes - DON'T hang up immediately (as I always used to do), but make them wait.

Having to waste time like this, the telemarketer will have to hang up quite quickly themselves, in order to fulfil their own targets.

Your number should be taken off their list to save them making the same time-consuming mistake again! Genius!

When you hear the telemarketer's phone's "beep-beep-beep-beep!" tone showing they have hung up, so can you! Job done with minimum spoons used up, only three little words spoken.

Then there are those ominous silent calls from the machines that probe to make sure someone is actually present on the dialled number, in order to then queue up a real sales rep to ring you later.

As soon as you hear the click that tells you it's one of those automated diallers, the second failsafe trick is to hit the "#" (hash) button on your phone 6 or 7 times before hanging up. That apparently will confuse the machine that dials your number and stop the company having you on the automatic ring-back list.

Simple.

I've now got:

(Salesperson) "Hold on, please..."

(Machine) #######

Written boldly on a card by my landline. When brainfog descends, I know exactly what to say to make them stay away!

Hope this helps you too!

Have a happy holiday. Be gentle with yourselves!

M.E. in the media: the aftershocks continue

All the news that's unfit to print?

Earthquakes always have aftershocks, don't they? Just read this in 'The Times Higher Educational Supplement' online.

Just when we were starting to think that maybe, just maybe, certain muck-spreaders and mischief-mongers (oh no, could that be counted as a death threat?) had done their worst, the Times Higher Ed decides to recycle the recent press feeding frenzy and now to concertina all the accusations into one punchy paragraph.

I haven't the strength left to be surprised or disappointed (does that make me mentally unbalanced, I wonder?) It's the same old, same old, compressed into a handy pill-sized gobbet of "news" summary that makes it look like irrefutable fact.

Surely these unnamed hordes of M.E. suffering extremists must have a hell of a lot more energy than you or I to terrorise the poor ickle psychs like this?

I quote, peeping through my fingers:

• Scientists researching chronic fatigue syndrome - also known as myalgic encephalomyelitis, or ME - are being targeted by activists who are now as dangerous as animal rights extremists, it has been claimed. The militants, who object to any suggestion that the illness has psychological causes, have turned up at lectures with knives, punched scientists in the street and issued death threats, it was reported on 21 August. They are also said to have bombarded researchers with Freedom of Information requests, made countless complaints to university ethics committees, and falsely alleged that scientists pursuing work in the subject are in the pay of drug and insurance companies. Myra McClure, head of infectious diseases at Imperial College London, told The Observer: "I published a study which these extremists did not like and was subjected to a staggering volley of horrible abuse. One man wrote he was having pleasure imagining that he was watching me drown. He sent that every day for months."

www.timeshighereducation.co.uk


Sadly, this is neither higher, nor educational.

Hopefully not to the psychiatric school beginning with "W"!

N.B. There was also a cartoon to go with the Times Higher Ed article, but this was later withdrawn. Hopefully they will not later claim this was because they received death threats!
If your health and blood pressure are up to it, the said cartoon can be seen here. Thanks to Dr Speedy at Niceguidelines blogspot for preserving a link to it for the sake of truth!



Many thanks for the 'heads up' about the THES article from @Velogubbed on Twitter. Her own wonderful M.E. and writing related blog can be enjoyed here:


http://velo-gubbed-legs.blogspot.com/

If you haven't read her fantastic book about her life with M.E. yet, please do yourself a favour and put that right: 'The State of Me' by Nasim Marie Jafry is available on Amazon and good bookshops.

Fair Warning: Coping With Unexpected Visitors

I really appreciate all my lovely friends and followers online, who make every day brighter with communication that can be paced as needed, since most of us really understand M.E. and are in a similar boat.

Real friends love us for who we really are

I really appreciate other IRL (In Real Life) friends and people, too. The closest of these usually understand that ideally I need fair warning of visits, calls, etc so I can save up some "spoonie" energy to make the most of them, if at all possible.


Not everyone does make allowances, of course.  It's so difficult for the energy-rich to get their heads round the idea of "pacing". Heaven knows, it's hard enough for us to get our heads round, isn't it? Newly diagnosed or old soldiers in the field of M.E. or other challenging illnesses alike, we can find this "pacing" lark a stumbling block when faced with chaotic old "real life". (My spellchecking just discovered that I'd originally typed "fiend of M.E." instead of "field" there - a Freudian slip, eh, guys?)

Eaten by the monster of M.E.?

I can't blame friends who want to do things with me "on spec". I don't blame them. How could I? I love them and would never want to snub or hurt them! They make life worth living, even at the toughest times when I can't see them at all.

Friends - something to celebrate and treasure! But that does mean energy outlay!

When they see me, it's because I'm strong enough to see them. I guess it's harder for them to picture me after they've gone, or I'm back indoors etc, exhausted and nigh-on catatonic with post-exertional malaise and sickening pain and nausea.

They're off again, by then, getting on with their own busy lives, unaware what it's cost me to spend some time being "my old normal self" for a bit! I would rather it was this way round than them never coming or contacting or doing something off the cuff for fear of making me ill! That wouldn't be living at all, like times when I'm housebound altogether through illness. 

Real life doesn't always support "pacing". It's full of spontaneity and serendipity. Just like me at my best!

A mate of my Mum's gave a sticker to all the lasses in their little prayer and fellowship group that I'm sometimes physically a part of, when I'm well enough to make the two bus journeys that lie between our villages. It's one of those yellow stickers sponsored by the South Yorkshire Police (and no doubt other forces round the country) that warns door-knockers:

"DOORSTOPPERS: SAY NO TO DOORSTEP CALLERS.
We will NOT buy at this doorstep from doorstep callers...
...if you don't have an appointment THEN DON'T BOTHER KNOCKING"

I'd had it stuck on the door less than a day when two separate doorstep hawkers knocked as usual. Nobody reads it. I still struggle to the door if I can (usually if I ignore it it'll turn out to be a colleague or friend, by sod's law, a bit like phone calls!)


Being an accommodating sunny soul, I usually find myself having the conversation about unwanted double glazing or the unwelcome switch of utility company anyway, when I'm well enough to stand and talk at the same time. The only time I respectfully pointed out the yellow notice, the young guy outside in the rain looked so crushed, it was me who felt bad for hours after! 

It's afterwards, frazzled and slumped that I'll passive-aggressively remember why many would just have grumpily gesticulated at the notice and slammed the door. (If you knew me in real life, you'd realise that is just NEVER going to happen!). So I end up looking like this instead:

The only folks who seem to read the warning are visiting friends or colleagues from church who laugh and say, as I let them in:


"Hahaha - should I go away again? I haven't got an appointment!"


I guess the hint's never taken by the people who actually DO rob and bankrupt energy like a vacuum sucking up crumbs! This notice says nothing about illness on it, of course. Maybe there are so many stickers about from "Beware of the Dog" to "Wet Paint" that door-to-door workers simply filter them all out?

OK. Maybe not...

I'd rather NOT put anything about my illness on the outside of my house, apart from 'M.E. Awareness' posters that don't identify me as an M.E. sufferer. Believe me, that's not because I'm ashamed. Simply because I don't want to make myself more vulnerable to opportunists. 

Well, this morning's energy is already accounted for in blogging (and all the checking, rechecking, blurred vision, rests, false starts, rechecking, rechecking, correcting, losing it all by accident etc that entails!). I had to save a thimbleful of energy "spoons" today, as it's Thursday, to put out the recycling bin. Then the box. Then the bag for newspapers. Not all at once! Mercifully I don't have much in any of them this week. But summer's going fast, and I can't afford not to have the green bin emptied, ready for any moment between raindrops when my Mum can help with the mowing and I happen to have the strength to dead-head a rose!

Somebody else with the same idea!

So that's me spent for now. People think my doorbell is disconnected as a joke. As if! We need to keep our energy recycled too!


Fair warning. Can't say fairer than that?

 Please can I recycle my energy and cells while we're at it?