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?

NEETs and NINMYSIPs

One of today's BBC News headlines says there is a rise in the number of NEETs in the UK.
In other words, youths 'Not in Education Employment or Training'. 

BBC News UK: 'Neet' youths figure at second-quarter high 


Yet what is happening every day to the most vulnerable people in Britain is consistently ignored by MPs or artfully misreported or slewed with spin. The sick, the elderly, the homeless hung out to dry or pushed up a creek without a paddle by those who shout about caring while they milk the myth of the "Big Society".

Considering the scandalous failure of politicians of all parties and persuasions to keep their word or act with any smidgen of integrity, the headline perhaps should read:


'Rise in the number of NINMYSIP adults in the UK.'


No Ideas, No Morals, Yet Still In Parliament.


Sorry, rant over!

You give M.E. road rage! Proposed driving ban on diabetics

 

If a new EU directive comes into place, insulin dependent diabetics may no longer be considered fit to drive. The proposed changes are due to take effect in October.

Up to 1 million people could lose their licences.

The ruling has already been called "harsh" and "unnecessarily strict".

Diabetes.co.uk covers EU proposed diabetic driving ban

This is one battle I won't be fighting. 

But I do understand why others might feel they must.

I have many friends, with and without insulin-dependent Diabetes, Myalgic Encephalomyelitis or any other chronic illness, who swear to me on a regular basis that they could not possibly live even a day without using their car. Transporting the family. Carrying the weekly shop. Commuting to work. Living in isolated spots.

The implication is almost always, that I am some kind of slightly antiquated, pitiable freak for choosing NOT to drive.

"Yes, but if you were me..." they trail off, with a shake of their heads.

The ones who take this attitude will also refer to a bike as a "push-bike" showing their distaste for the concept of applying their buttocks to the saddle in anything more than a very occasional recreational capacity.

They are the people most likely, when I say I don't drive, to say, "You ought to get yourself a little car."

Spot the patronising "little" there? I then realise I've played into their hands by saying "I don't drive" as though it was some kind of defect or lack in my personal qualities. When I can remember, I try to say "I travel by..." adding in "foot", "bike", "public transport" etc as appropriate. But I don't usually bother, because inveterate drivers, in my own experience,  are unlikely to accept that it's a happy, fully informed, free choice I make.

Free choice. I understand people's reasons for always having to drive everywhere. I've heard them often enough over half a century, as it's to elective pedestrians like me they spend most time justifying their reasons. Among other drivers, why would they need to explain? The freedom to gridlock rules supreme.

Since I was first diagnosed with Type 1 Diabetes at the age of 23, I have never had proper early warning signs of a hypoglycaemic attack. 27 years of medical efforts to "regain" these symptoms, which I didn't have from Day 1, have all failed miserably. I still, as ever, get down to 1.9 mmol/L (or if you're used to mg/dl about 34) before I can be pretty certain I'm getting low.

By then I have shimmering clouds of iridescent light in my central field of vision. The other behavioural symptoms that begin to manifest when my BG is that low, or before, render me, of course, stubbornly resistant to recognising any problem. Are you reasonable or rational when you're drunk? Or when your body's conserving every last scintilla of strength by shutting down bits of your brain? Exactly.

My diabetic control is good. On paper. My last two HbA1c's were just over 6%. My eating is regular. My self-tests of BG are frequent. Still, the erratic nature of the illness, affected by so many other factors going on inside and outside my living body, make my decision not to drive seem nothing but wisdom and a gift to the rest of humanity to me. I know this is not a crowd-pleasing opinion, but it's sincere.

Since M.E. took hold more recently, my strength, my co-ordination, my vision, my ability to concentrate on doing two things at once, let alone the complex web of reactions and decision-taking involved in driving, is not what I would hope was going on in the body of anybody else navigating today's busy roads, where children, animals or other adults are at their mercy and in their power to kill or maim.

M.E., rather than diabetes, has robbed me, for the time being, of the ability not only to contemplate driving, but also of walking comfortably without pain and subsequent exhaustion. My beloved mountain bikes lie with flat tires, wreathed in cobwebs since my collapse. Buses are nauseating, juddering torture chambers now intent on shaking me to a quivering pulp. I'm rarely well enough, or rich enough for rail travel these days, either! Cars have the same effect, of course!

Miss you guys!

Friends of mine whom I love dearly drive as insulin-dependent diabetics and sufferers from M.E. Many do so with no reported disadvantage to them or, I trust, to other road and pavement users. I have much anecdotal and personally witnessed examples of when insulin-dependent diabetes and M.E. supposedly in remission have helped to place others in life-threateningly dangerous situations on the road. People on the sidewalks and the hard shoulder, other road users and their own passengers have had narrow escapes indeed. Some have not been so lucky, or had the luxury (when did driving stop being a responsible privilege and become an inalienable right?) of continuing to drive.

I completely understand why many will be enraged at any suggestion that the EU can issue a one-size-fits-all law that insulin-dependent diabetics have their driving licenses revoked. One-size fits-all is rarely a good idea, and I, too, bridle in principle at one group being dictated to what it can and cannot do because of a random label. But diabetes is no random label. Neither is M.E. They are both very real, unpredictable, fluctuating illnesses.

It's a double-edged sword in my life that I can always see and often empathise with all points of view and shades of opinion. Some argue forcefully that night hypos don't somehow count, as they're not driving when they're asleep.What if they had to rush someone to hospital in an emergency in the wee small hours that left little time for precautions? I don't have the answers.

I am just explaining, for the record, much as I would defend vigorously others' rights and responsibilities who hold a differing opinion, why I personally cannot fight this particular battle without being hypocritical, if it should arise.

I don't drive. Not for health reasons alone. If I had a new pancreas and a cure for the myalgic encephalomyelitis tomorrow, I still wouldn't rush to get behind the wheel. I believe passionately that the planet is better served by my treading lightly on it and leaving it as I found it, as far as humanly possible.

To those who say "but public transport is terrible" "public transport doesn't cover A or B area" "public transport is far too expensive," I say this. Public transport never will be forced into being efficient, reliable, well-funded, cheap and  convenient until enough people demand they need it. It will never happen unless enough of us give up our "standing army" of private vehicles to make way for public transport to be truly for the public.

Born a railway child, I've depended on it and mostly delighted in it all my life. Walking is beautiful and cycling is one of the biggest delights in my life. One I long to return to when and if M.E. no longer has me so grounded as I am now.

No, carting heavy shopping and books/teaching resources to work on my back in a huge strong bag, on and off buses, in and out of panniers, was no sinecure. Not when my workplace was an hour's walk away and the shops on the way home were half an hour in another direction. There and back. A boot/trunk might stop me having to see, smell or interact with my fellow humans quite so often as I do. But that's my human choice.

The directive from Brussels is, as yet, a rumoured proposition. I personally doubt it would make it past the firewall of indignant opposition it would certainly face, not least because so few members of parliament, so few of us anywhere, embrace a life without the car.

But I can still dream, and so can you!

M.E. in the media: why let the truth get in the way of a good story?

Myalgic Encephalomyelitis is not a mental disorder.

Let me start with the simple fact. Medical research has shown it. The World Health Organisation has recognised it. Everyone with M.E. knows it to their cost. How much simpler it would be if we could walk away from M.E. after a cosy chat about our "illness beliefs" and a few phased-in press-ups!

No right-thinking M.E. sufferer wants anything but a cure and their former health back. For children and young people who never knew a healthy life before M.E. struck, just the cure and a happy normal future would do.


We do not want psychiatrists harmed or threatened. Of course not! What are people thinking? Like me, none but a handful of (as yet curiously unnamed) desperately sick individuals at the end of their tether, would wish harm on anybody. Let alone issue death threats. This is appalling to us all.

But smokescreen coverage of the "victimisation" of those seeking to turn back the clock to the days when the mistaken insult "Yuppie Flu" reigned in the minds of a largely uninformed public, has pothered up around the illness that has stolen our lives and livelihoods for so long on a daily basis. While this mass media story goes viral, it is in danger of snuffing out bona fide campaigning for scientific medical progress into M.E. treatment and cure. That would be the real tragedy.

M.E. is not a mental disorder.

It bears no resemblance to bi-polar depression, Munchhausen's By Proxy, schizophrenia or any other mental illness. Any more than M.S. was ever really "hysterical paralysis" or Tuberculosis was ever cured by shoving dying men and women out into the sun to do them good in spite of their wrong "illness beliefs"!


M.E. is NOT a mental disorder.


There seems no end of confusion about this fact. Not helped by the recent onslaught of misinformation, half-truths and lies in the media.

Let me repeat in case anybody is still in doubt:

 M.E. is not a mental disorder.

I understand the confusion. There's a whole Tower of Babel being erected in the press with a confusion of voices shouting from their own corners out of vested interest.

Scientific research is costly. More costly than the cheap talking therapies and often hugely damaging regimes of exercise forced on muscles and mitochondria that are made all the more sick by such tactics. Those M.E. patients like myself who have always driven ourselves to our limits however we felt, have already discovered to our cost the dire consequences of such determination to show our bodies "tough love"!


Scientific biomedical research into M.E. is expensive. But it's not a luxury. It is vital.

So far it has shown the truth that M.E. is a physical illness, not some vague conglomeration of imaginary symptoms making sufferers turn from hard-working, articulate, driven, fully-functioning pillars of society into benefit-bludging, lazy hypochondriacs. Who on earth do you think you are labelling? Are your memories so pathetically short? Where were you knockers, disbelievers and haters when we were saving your lives in the operating theatre or baptising your babies, successfully fighting your lawsuits or striding along optimistically helping to change the world where we all paid tax while we could? That was us M.E. sufferers, just like you! We were (and would love to be again!) your co-workers, crisis solvers and your children!

Recent articles in papers like the Sunday Times and Observer, may have misled you. They probably intended to. By doing so they enable the government, DWP and paid psychiatrists to feel justified in forcing some of the sickest and most vulnerable people in our society, with an illness every bit as disabling as M.S. or polio, into work they are too fluctuatingly, severely ill to fulfil without relapse, or into cheap and ineffective forms of treatment, which is actually designed to manage mental health problems, or psychosomatic syndromes yet often causes M.E. patients to crash and burn.

These treatments include the cheap-to-fund non-invasive and unscientific cognitive behavioural therapy (CBT) or graded exercise therapy (GET) aimed at weaning patients off damaging sickness-perpetuating habits and thought patterns. This does not work with physiological, multi-systemic diseases like M.E., M.S., Cancer, Tuberculosis, Polio, Myasthenia Gravis or Diabetes Mellitus. So why is this the only funded "treatment" available for M.E.? Why? How can our mental aberrations make us too dangerous to donate blood?



Contrary to what has been stated in the media, please listen to the words and understand:

Neurological DOES NOT mean neurotic. 


 Physical disease DOES NOT mean psychological disease.

Physiological illness DOES NOT mean psychosomatic illness.


It really is that simple.

M.E. has been classified by the World Health Organisation and M.E. researchers who are not tied to proving a money-saving, non-scientific theory to keep truthful enquiry at bay as follows:

a serious multi-system neuroimmune disorder affecting the central, autonomic and peripheral nervous systems as well as the immune, cardiovascular, respiratory, neuroendocrine, gastrointestinal, musculo-skeletal, visual and reproductive systems. 


Is that clear enough?

Yet again the papers have rushed into a feeding frenzy on the say-so of certain individuals, borrowing each others' tag lines and taking the easy route to a sensational story.

Why let the truth get in the way of a good story?


Why?

Unfortunately it's too late to ask those who have already died of the effects of M.E. like Sophie Mirza, Lynn Gilderdale and others who make up the 3% of M.E. patients for whom it proves fatal with deaths due to tumours, cardiac failure, brain death and liver failure, sudden collapse after overexertion or exercise and the effects of a slowly worsening illness or, horrifyingly in the 21st century, inappropriate medical "care". Around 30% of M.E. cases are progressive and degenerative. More info on these stats: The Hummingbirds' Foundation for M.E.


Why let the truth get in the way of a good story? I think we all know by now why it must not be allowed to.

Let's go on raising awareness of M.E. in whatever peaceful, respectful but dog-with-a-bone determined ways we can, if we can, whenever and however we can.

If you're still in doubt how medical science is still being ignored at the highest level of UK decision-making in favour of the dangerously contrary all-in-the-mind model of M.E., you can read this post in the excellent blog Dancing with the Sandman:


Letters from Malcolm Hooper Emeritus Professor of Medicinal Chemistry University of Sunderland, to Iain Duncan Smith MP DWP and Andrew Lansley MP Sec of State for Health