Brain Fog: Slow Down and Simplify, Please!

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

They rightly summarise how we spoonies struggle:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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


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


As Llewellyn King writes so well:


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

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!

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.

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.  

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!"

Wait a minute, Mr Postman!

I got back yesterday from my 50th birthday weekend spent at my Mum's in a nearby village.


The two bus journeys back, even though simple and with almost no walking in between, have wiped me out. Much of the weekend itself was spent asleep or horizontal. My palpitations (after the recent massive diabetic hypo), nausea, pain and dizziness have been very much part of the celebratory weekend. 


Thankfully, I managed to rest up enough to do what I'd promised at Mum's local church on Sunday. It's a small congregation who have known me since I was a child. They're too kind to spot mistakes I know I made, or judge me for having to slump in the chair at times instead of standing in the pulpit non-stop. 

I had to lie down and sleep at a friend's before the lunch she'd invited us to share afterwards. Words didn't come so easily when I didn't have them painstakingly prepared and written down in front of me. Small talk can be such a big deal with M.E., can't it? I felt like I'd got both eyes in the same socket after a few hours. I still count my blessings at what I can manage, compared to me at my very worst with M.E. though. 

Coming back through my own front door yesterday, I found myself paddling through a mountain of mail. Much was the usual junk. Some was belated birthday cards. One was the dreaded brown window envelope so many of us have been waiting for so long. D.W.P.'s return address in Belfast was printed on the reverse, and these were the first words my eyes picked out in the whole untidy pile. I opened it before I even took my coat off. Better to know than yet another day wondering.

It was good old IBM01, all four "helpful" pages, telling me about the changeover from Incapacity Benefit/Severe Disablement Allowance/Income Support to Employment & Support Allowance. Explaining that as "customers" (don't you love that meaningless, patronising term in the circumstances?) "will be considered and assessed for Employment and Support Allowance between 2010 and 2014", "We are writing to you because you are affected now".

They check they have the right contact phone number and promise to phone some time in the two weeks following date of posting (8th October). It's almost exactly three years since my last DWP medical assessment which I passed. Although I face the same health problems most days as I did back then, plus some extras, I fully expect to be disallowed this time. We all know it's no longer about disability. It's a cost-cutting exercise in which nothing and nobody is treated with medical insight or even the wisdom of common sense.


So now the sickening wait for the first brown envelope to fall is over. Now I'm waiting for my mobile to ring so they can confirm my identity, and begin to find reasons they can brand me a workshy scrounger. I don't recall being that cynical the last time I was assessed. I had no reason to. 

After that, I'll be sent the chunky health questionnaire, "Limited Capability for Work", struggle my way through that, then wait to be called to the WCA (Work Capability Assessment) and then the sword of Damocles will fall. I don't know whether I would have the strength to grind myself down and waste my last few "spoons" in an appeal. Another visit from the church next week to see if, one way or another, there is something I can do with the little sporadic health I have. That will be a lifeline, not least if the little I have to live on is snatched away.


I recently read a shocking story that these forms are first opened by postal staff! I can't even decide whether to mention this to the person who rings me. Or will that cross me off from credibility right away? Que sera sera. I just pray I have the strength to stay positive and gracious now this terrifying ordeal is beginning at last. It can never be quite as trying, draining and humiliating as living with chronic illnesses is, now, can it? Or can it?

I have to stay strong, so in future I can still be some use or encouragement to others faced with this disease. We can do this, but not alone!


In other news: tomorrow I see my GP for the first time in a while, about the recent hypo leaving me further weakened by palpitations, just to check my heart is behaving itself.


In the best news of all: my 50th birthday fundraiser for Invest in M.E. has already made over £800 for the charity, smashing my £500 target with an amazing 161% of total! Further donations are still being promised, and my page is still open for donations till 31st October at the end of the month! 


Joyce's 50th Birthday Gift For Invest in M.E. 

A HUGE thank you to everybody who has given whatever they can to make my birthday wish come true! You are potentially helping all those with M.E. to have the chance of a brighter future! Bless you! Please know what a difference we can make together. We need each other more than ever in these difficult times XXX

Know when enough's enough!

I'm so sorry I'm not really up to blogging much on this today but I really want to share this excellent M.E. article from Margaret Williams which you can read here:

Margaret Williams's article "Professor Wessely over a Barrel?"

The article says it all, really.


Sorry I'm struggling to process info today. Last night I lost two hours of my life from my memory when I had the worst hypo I have had in 27 years of Type 1 Diabetes. Believe me, I've had many many hypos over the years, with little or no warning symptoms from the start.

I had just eaten part of a substantial amount of carbs in an Indian meal, with some poppadom, naan bread, onion bhaji and prawn korma with my mum who is with me as usual for the weekend. Normally, a meal like that would mean high blood sugars, without extra insulin. My sugar was 5.8 before tea. Perfect. I had the normal amount of Novorapid for the carbs I could count, but aware of the fat content which might alter the absorbtion rate, I was prepared to test my blood glucose shortly after tea to see if I needed to adjust anything to maintain good control. Usual stuff.

After tea, I felt exhausted. Singing a little meant I had to close my eyes to concentrate to remember the words and co-ordinate. My chest and throat soon made me stop. Usual M.E. frustrations. A little later, very unsteady and drained/pained, but putting it  down to M.E., I remember beginning to show my Mum a favourite music video on my laptop. I don't remember it ending.

I do recall the last thing I wanted to say, but couldn't quite manage without giggling (typical of me, hypo or not!) about something one of the band was wearing. I leaned against my mum several times, helpless with laughter, to say the joke in her ear. She ended up letting me lay down on the settee while she moved to a nearby chair. She left the room to go upstairs. I apparently had got up (I don't remember) meanwhile, and passed her crawling up the stairs on my way to lie on the bed. Not unusual with M.E. I'd need to rest after various little things achieved in the day anyway, and to digest even that modest meal.

Of the next two hours I have hardly any recall. This was about 8pm. I spoke to reassure my Mum apparently, but don't remember any of this. The next two hours were spent in locked agony for me. Sweating, in pain, disorientated. Everything like a weird waking dream. Things in the room unfamiliar and nightmarish.

My Mum let me rest (neither of us had any reason to suspect a hypo straight after a carb heavy meal like that which I've eaten before with rather the opposite effect of high blood sugars!) until 9pm. When she came to check on me, I was sitting awkwardly on the edge of the bed, with a nail file in my hand and my left contact lens on the end of my middle finger. How I took it out without losing it is one of the mysteries and things to be thankful for about this episode!

My Mum could get no sense out of me (no change there then, some would say!) but she could guess by then from my floppy incoherence that I must be hypo. As I was conscious, she attempted to get some nearby Jelly Babies (I always keep boxes of them close at hand wherever I am) into me. I apparently knocked the unfortunate Jelly Baby out of her hand and tried to punch her hand away.

Many diabetics will recognise this resistance to taking sugar when the brain is shutting down onto automatic pilot. Believe us, it's not a "silly" choice or stubbornness, just an inevitable side-effect of low blood sugar. We have no choice. I don't even remember. I kept lurching the contact lens at her, unable to form words, but groaning out quite aggressively. (One of the few times you'll see any fighting talk from me towards others, no doubt!) Lucky my Mum is so wise and understanding!

She scooped my legs back into bed, making me chew several of the soft, easily digested sweets that have so often rescued me. I became amenable enough though still remember nothing but my own inner nightmare vision of all this! She prized the file out of my hand (I have no idea why I needed it, at all!) and managed to get my lens safely into its case.

When she returned at ten, I was slowly coming back to reality. I had begun to make sense of the shapes in the bedroom, and the slow realisation that this was real, not a feverish dream. I pulled at my soaked hair and realised it was indeed attached to my head. But why was my Blood Glucose Tester upstairs when I had left it downstairs, surely? Why was my contact lens case on the bedside chair and why was I all but blind in one eye?

I had no idea what day it was, or what time.

When my mum came in, she explained, and helped me ascertain which lens was still in, so I could take it safely out and put my glasses on so I could see again. I tested my blood and it was still 2.0, after all the sugar, but I was coming back from the brink. I can register a blood sugar of 1.9 with no obvious symptoms at other times, contrary to all the official line on warning signs. I wonder if one day, what I once read about M.E. contributing to unexplained sudden hypoglycaemic attacks will finally make sense of all this?

I am crashed today, but my sugars are now at last down from double figures, where they soared due to much needed sugary compensation. You'll not question again why I choose not to drive!

My Mum has helped me to put back together my fragmentary, nightmarish memories of those lost two hours, and as usual, we can laugh about it now. But this one goes down in my diabetic history as a biggy. Still never bothered a paramedic, though. I hope I never will!

Hurry up there with your inconveniently chronic or terminal disability!

Terminally ill people warned over possible benefit cut

We know it's coming.

Not just to the terminally ill who can't be made well to a time limit. But to those with illnesses that can't be wished away in a year for the convenience of those who bled away the resources others were stewarding respectfully. 


We know it's coming.

Faster than the cures for our illnesses.

Faster than the grim reaper can ride.


Faster than enough jobs can be created that the fit and strong can do.


Faster than adaptations of working conditions for the sick and weak with disabling, fluctuating long-term illnesses can be devised.

The politicians of all parties who have devised the Welfare Reform Bill with the one-year-and-you're-on-your-own rider to the Employment Support Allowance, don't hear anything coming. They're not even listening. They hope their own needs will never outstrip their ability to legislate.


Every day the dreaded envelopes flop onto doormats. The letters that herald the day that the innocent, the genuinely sick and those crushed by circumstances they never courted, never expected, yet honestly and hard-workingly paid their taxes towards, comes creeping up on every last one of us.


But I won't despair. I still have that luxury!

I've always lived within my modest means. I sit on second hand furniture bought cheaply when I was still working and could have afforded better. My choice, I'm not needing applause! My mum inspires my way of being. Simple stuff matters to me. I count myself blessed.

Few things I own are new or flash or worth stealing, let alone fretting over. As even those basic things like food and heat get less and less affordable, I'm adapting. What's the alternative I could live with? If those I've tried to be a useful friend to while ever I could, can help, they will. If not, I will starve and shiver with no regrets. Why would I regret what others have on their own conscience or not? Things I can't change by indignant bluster?


Nobody can make you bitter or feel guilty if you are not. They will try. We know they will try. But if you let them change your heart and chip away your joy and resilience, they really have won, haven't they?

Even if I end up in the gutter, you won't stop me looking at the stars.


Till then, on behalf of compassion, respect and all that's good and beautiful, I will quietly fight on.

The cost of living with ME: Tread softly because you tread on my dreams

New research into chronic condition reveals long-term cost to UK economy

On the one hand, it's disappointing how M.E. hits the media today mainly because its effects are a drain on the UK economy at a time of austerity.


On the other hand, there is a note of concern, even compassion, hidden in the practical call for our disease to be more effectively addressed.


M.E. has cost the country a lot.


M.E. has cost many of us our careers, our former quality of life, our perception as worthwhile human beings in the eyes of society and press, our future prospects, our dearest dreams.

So this new study by the University of Bristol is timely.
It outlines the impact of the illness on employment and productivity.
But it also reminds people everywhere of the hidden, denied suffering behind those figures:

"In addition to the moral imperative, there is clearly a powerful economic argument for addressing the needs of this greatly neglected patient group," says Sir Peter Spencer, CEO of Action for M.E.

In the end, M.E. patients are long past caring whether it comes via "the moral imperative" to look our way after all these wasted years, or because of the "powerful economic argument" which is the only language those in power understand. We care only that it comes at last.

As Dr Esther Crawley, lead author of the report puts it:


"Above and beyond these financial costs, ME or CFS has a huge impact on quality of life. "

With M.E., we are called to live with that reduced quality of life day in, day out.
This, alongside yesterday's news item I discussed here, we have every reason to feel hopeful again.

“There is an urgent need for more adequate NHS provision for those affected by this often life-ruining illness that is costing so much." The words of Colin Barton, Chair of Sussex and Kent ME/CFS Society.


The hopes and dreams of all of us. 

We have to trust they won't be trampled on this time.

Tread softly because you tread on my dreams - W.B. Yeats

 

The 7 Genomic Subtypes of ME/CFS; the future looks bright and it's down to us!

BMJ Article on the 7 genomic subtypes of ME/CFS

Quotes from the text outlining the 7 subtypes:

'Subtypes 1, 2 and 7 were the most severe.

Subtype 3 was the mildest.

Clinical features of each subtype were as follows:

Subtype 1 (cognitive, musculoskeletal, sleep, anxiety/depression);

Subtype 2 (musculoskeletal, pain, anxiety/depression);

Subtype 3 (mild);

Subtype 4 (cognitive);

Subtype 5 (musculoskeletal, gastrointestinal);

Subtype 6 (postexertional);

Subtype 7 (pain, infectious, musculoskeletal, sleep, neurological, gastrointestinal, neurocognitive, anxiety/depression). 

Conclusion: It was particularly interesting that in the seven genomically derived subtypes there were distinct clinical syndromes, and that those which were most severe were also those with anxiety/depression, as would be expected in a disease with a biological basis.' 

I remember when this study was first publicised, how interesting and hopeful it seemed. Hopes rose that the time when proper full clinical diagnosis, and possible treatment, even a cure, was just around the corner. Hopes rose that there would no longer be any arguments over ME being psychological, but that any anxiety/depression would be seen as just another explicable side effect of a biological disease. Just as depression is a common side effect of diabetes or many other long-term chronic illnesses.

 Then the summer's shenanigans damped us down for a while. The media and others seemed intent on blowing down our castle in the clouds puff by puff.

Reading this again today, I am filled with fresh hope. After all the disheartening bad press about shadowy death threats from crazed activists, after all the rage and vitriol poured out on those who seem not to think it urgent that all of us with M.E. should have our lives back asap.


Now, there's something to aim at that is in all our hands to influence, even the sickest. Now, there is targeted focus for fundraising towards the new vision for a Centre of Excellence for Research and Treatment of M.E. from Invest in ME

If discoveries like the one about possible ME/CFS subtypes detailed above are already happening, how much more is likely to be possible once funding and facilities are in place?

Here's how we can already start helping to make that difference:

Let's Do It For ME! is a patient-driven campaign to raise awareness and vital funds for a UK centre of excellence for translational bio-medical ME research, clinical assessment, diagnosis and treatment for patients, training and information for health care staff, based at the Norwich Research Park in the UK and aiming to work collaboratively with international biomedical researchers.

As stated in my last post here

I've set up a page to encourage those in my life to their bit towards funding for the future of all diagnosed with ME/CFS in the UK. After less than a week, I'm a modest 8% of the way towards my personal fundraising target. And I'm still only 49! This is a real birthday present for my 50th birthday that will keep on giving something back to all of us for lifetimes still to come!

That really will be something to celebrate!

Puppy head chewing blight

It's not everybody who gets to read the same page of a biography of Georgiana, Duchess of Devonshire a dozen times while having their scalp chewed by an over-eager puppy.


That's how I spent part of last night.

So it seemed.


My M.E. is rather flared and crashed. Probably from doing a bit too much. Or a virus I might be fighting. I can't keep warm. Yet as ever, beads of sweat are never strangers! Everything is sore. Swallowing feels like necking razor blades.

My appetite has dwindled this week. Just as well! Cooking takes even more 'spoons' than having the energy to fancy eating. I didn't have the energy to plan it well or sort the shopping while I had a bit of Mum's help over the Bank Hol. I have to eat judiciously of course, to keep my blood sugar in order. But it's soup and simples this week. That's where having to get rid of the freezer when forced to downsize when I lost my job really hits home!

No, of course I didn't read the page a dozen times. I didn't count. But my eyes kept doing the distance without taking it in. Again and again. Why will lines not stay parallel for a change? Then the eyes got too sore to go on. Head too banging to keep them open. My chest nagged to be allowed to liquefy on the carpet. You know the score! By then my wrists were too sore and fluttery to keep the book at the right angle, possibly from typing too for a minute too long while blogging and Twittering.

Maybe it was sitting up to pay the September bills. The Methodist year begins today, the day I used to start another exciting year working for the Methodist Church, for the decades pre-M.E. I'm still not completely over that particular bereavement even after five years unable to work. 

Nobody's missing me now, on this day, or wondering why I haven't turned up for a meeting, funeral, baptism, wedding or visit! It passes like all the others on the calendar as my colleagues and congregations get on with their busy lives! Enough of that stream of consciousness! The day will come when I can rejoin them all, and not just muster strength for a few minutes in the pulpit each month to help out and "keep my hand in," after which I'm fit for nothing else for days! That's improvement from bed bound, at least occasionally, I remind myself.

No, of course an eager puppy wasn't chewing my scalp. My darling dog died a couple of years ago and I've been too sick to contemplate getting another companion yet. That will be a beautiful day indeed! The aforementioned chewing pup was actually just nerves in my head still feeling the damage from three bouts of shingles. It's like having severe toothache in your noddle! I'd sooner have had the puppy. I can't house-train or cuddle my shingle-mashed nerve endings!

I went to bed early with a hot water bottle, mittens, plus a shawl on top of a slanket. Reminding myself that the calendar would need changing today to September this morning, not December! I love these glam summer fashions! I'll be setting a trend, no doubt, looking on the bright side! At least the thermals are still in the drawer. For now!

Lying awake, I've now hatched a cunning plan, inspired by others online doing similar things. I'm going to use my upcoming 50th birthday next month to raise funds for M.E. biomedical research. No, not donating my body, silly, I still need it! I'll be setting up a page to raise money for independent charity Invest in M.E. or for the M.E. Association .

Watch this space.

I need to consider things like:

-how easily does the cause stick in the minds of older friends (a few find it hard enough to keep up with emails and Google stuff, let alone do anything more complex!)


-where the funding actually goes

-how easy people will find it to donate

Etc. Etc. Etc. Wise, balanced decisions take extra energy on days like this!





www.everyclick.com and www.justgiving.com seem tried, tested, and easy to use, to me anyway, so I just need to give it more thought.

In my will, made back in the early days of my diagnosis, I'm leaving modest legacies, should any of my dwindling cash remain by the time of my demise, to the M.E.A. and M.E. Research UK, though in light of current concerns, I wonder if changing that last named charity to Invest in M.E. might better ensure the bequest actually goes where it's needed and will best be used.

I've still time to think about it all, as I've a whole month to enjoy being in my forties! Hopefully even longer still before my last will and testament comes into effect! For now, it's back to bed, though, says my killjoy bod!


P.S. I love my friends! One of them who really "gets" my sense of humour has just messaged me: "love and prayers for a respite from this puppy head chewing blight"! 

My own lad pictured here was always up for a laugh, too!

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 

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.