Jabsolutey not fabulous!

Still struggling with fluttery heart and attendant nausea, dizzy spells etc on top of all usual stuff after lengthy hypo week last Saturday.


Could only walk very short distances, very very slowly at weekend. Mum actually said she'd not known me so slow for as long as she could remember. She has just gone to make appointment with my GP to check out that all OK in cardiac department as she puts my prescription in.

Had flu jab on Saturday morning. One of the male GPs at practice, giving the jab, listened empathetically to my usual "Diabetic - yes, M.E.- possibly no" dilemma. He obviously saw the possible past problems with the flu jab in my case as signs of a weakened immune system. He took M.E seriously, even if he had no answers. He seemed interested in my 50th birthday invitation to raise funds for bio-medical research so we'll one day have the answers. Had the jab anyway, but he was supportive and understanding, which I always take as a sign of progress and hope.

Absolutely flattened now. Heart thumps and flutters seem worse in evening and when rising from sitting/lying, but other times too, more regularly than in recent past. Not anxious, so no reason this symptom should have suddenly become pronounced. Palpitations can be harmless or a signal of something else. It's not pain, rather a feeling of a change of beat or butterfly breath (if butterflies had breath!) just to the right centre of my chest. Sometimes 7-8 times in an hour, maybe, other times less frequently and hours when not noticed at all. That's when I'm actually asleep, I guess!

 No doubt it won't show up on a stethoscope during a five minute appointment. At least I will have checked, for well-wishers' and loved ones' sakes, if nothing else.


Everything feels swollen. Sore throat. Can't think of words. Can't remember stuff that's obvious. Blood sugars through roof much of time since jab. Burning hot patches in limbs, organs, torso. Left eyelid swollen and eye sore. Shivery. Diarrhoea intermittently, then gone. Scalp and neck sore. Dizzy. Nauseous. No real appetite. Balance way off. (Using stick in house today). Exhausted just breathing. Feeling compulsion to lie down on floor wherever I am. Too jerky and hot to sleep through night.


Just a normal M.E. day (not) at the office, I suppose.

 Quite a few good folks and friends wanting to call by this week to mark my 50th on Friday. Then I've promised a service in the village where I was born on Sunday. I have to be well enough for that hour, plus lunch a dear old friend has offered afterwards. Need to see another friend who is terribly sick over the weekend too while I'm over there. Looks overwhelming from here at the moment, but nil desperandum!


So I'll leave it there for now and get properly horizontal again.
Look on the bright side - when you're flat you can't fall any further!

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!

Please Invest in M.E. to Celebrate my 50th Birthday!

 ...soon!

So, I hit the big 50 next month.

Spirit still in my mid 20s - often barely in double figures tbh!

Body often feels like it belongs to a VERY badly-preseved centenarian!

Well, instead of the bubble bath and smellies, to mark my half century of years on earth, I'm hoping that together we can raise the big £5-0-0 towards the dream of everyone with M.E.

That dream CAN become reality: real bio-medical research, leading to effective treatment and one day, a real cure for the illness that has robbed so many of us of huge chunks of our lives and livelihoods!

How?


Well, through this page -
 
Joyce's 50th Birthday Gift for M.E.
 
from today till the end of October, you can help by donating however much you feel you can for UK charity Invest in ME
In collaboration with the wonderful Let's Do It For ME! a patient-driven campaign run in cooperation with Invest in ME to raise funds to establish a UK centre of excellence for biomedical ME research and treatment, you can make such a life-changing difference.

Simple!

Putting the dispiriting summer of dodgy journalism and misinformation behind us, let's go forward together and make a positive move that will change the world for all PWME (People with M.E.).

Learn more by clicking on any of the links above.

Can we do it?   

In the words of Bob the Builder, YES WE CAN!

Joyce's 50th Birthday Gift for M.E.

Thank you so much in advance!

  

More info from the M.E. ASSOCIATION
Full definition of the disease and its symptoms (the science bit!) International Consensus Criteria for Myalgic Encephalomyelitis

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

The Truth Is Out There!

The Truth Is Out There. The Truth About M.E./CFS/CFIDS.

But some powerful bum steers have hit the tarmac with a bigger bang, since last I wrote.


Did anybody else notice how soon after the news of Dr Myhill's exoneration of all misconduct charges by the General Medical Council, the pernicious nonsense peddled by Prof Simon Wessely hit the papers? Of course you did!


BBC News covers "victim" Wessely


Daily Mail covers "victim" Wessely


The Economist (where will this end???) covers "victim" Wessely


Top News US covers "victim" Wessely


Visit Bulgaria covers "victim" Wessely

Top News New Zealand covers "victim" Wessely 

Followed up by the slack journalism in the Times by Stephanie Marsh on Aug 6th 
Doctor's hate mail is sent by the people he tried to cure 

and the hackery of Rod Liddle on 31st July with his dismissively mocking
Shoot the medical messenger - see if that'll cure you

So that's pretty much worldwide coverage, then. Raising awareness of M.E.? Sadly, for all the wrong, mistaken reasons. How now to explain all this to friends, neighbours and strangers who have taken this new story on board over their cornflakes, I can't begin to know. 

Happily, most of them already know how little this is a state of mind, and those who knew me before I was ill, understand how the physical illness I fought for years finally took its worst toll, thriving on my opposition to lying down under its tyranny!

A few calculated words from a man who knows full well that time will prove him wrong, and has all the painful fight for M.E. research been swept away in a tide of headline-grabbing rhetoric and half-truths?

A drop of misinformation in already muddied waters. The ripples from this one have gone far indeed!

Amazing how, suddenly, all the decades of research on the physical causes and deeper understanding of this crushingly painful, debilitating neurological multi-systemic disease  (that definition's NOT coming from M.E. patients, but from scientists, researchers, doctors and the World Health Organisation who must also be insulted and mystified that Simon Wessely is now a self-proclaimed "leading expert in M.E.' ???) which rarely gets a mention in the media, has been outstripped by an outmoded and, franky, wholly incorrect analysis of the disease!



You know by now, I'm an optimist. My optimism hasn't been so sorely tried in the years since M.E. (not that woolly umbrella that lets the poison rain in, called "CFS") was diagnosed in my case. I was full of life, optimism, joy, hard work, fun, plans. I still am, ready for when M.E. ceases to pull the carpet unexpectedly from under me.

These articles have made me determined, after a period of sober reflection, that there is all the more need for those of us who can, to keep positive and do all we can to go on holding out for the day when the truth is known and the correct treatments and cures will finally come our way. Sadly for those like Sophie Mirza and Lynn Gilderdale, it will come too late.


The Truth is Out There. 

Not just on the X Files, either.

Professor Wessely knows it, and maybe that's why he has used what influence he has with the media and government to rekindle old ideas and theories about M.E. (experts have called it that, incidentally, not those of us who didn't know any name for the disease that snatched our lives and livelihoods away) that distract the eyes of the world from what is right under its nose, with horrifying sensationalism and sleight of hand.


The Truth is Out There.

We have to keep on believing that, and not letting playground bullies kick us when we are furthest down! Sticks and stones may hurt our bones (if not as much as M.E.!) but calling will not hurt us (when we've stopped weeping in disbelief at the lies levelled at derailing real scientific enquiry!)


Much has already been written to point out the glaring errors in these articles. I've been so thankful for them. We all have:


Actual BBC caller suffering from M.E. speaks the truth

Niceguidelines.blogspot.com - one of so many excellent posts 

Letter on MEA Website 


Letters responding to Rod Liddle's article in The Sunday Times


I have pushed myself to the maximun over the last few weeks. Doing a tiny part of what used to be my full-time vocation, now vountarily and with consequences that make me immobile and inarticuate now for ages afterwards. Receiving those visitors who can only get away to see me in the summer. Luckily they understand my limitations!


All in my head? I think we all know it isn't, whatever we read in the papers. Or hear from little green men.

Blood-y marvellous!

Just read an interesting post on another excellent blog here:


niceguidelines.blog


There is a new article which claims that 4.5% of those diagnosed with M.E./CFS have developed the disease after receiving a blood transfusion.


This adds to the debate surrounding the blood ban imposed on us in the past year in the UK.
Those of us officially diagnosed with M.E. can no longer give blood. Now this new study indicates that whatever organism/virus causes or triggers M.E. symptoms, may have its origins in the blood.


This doesn't take us much further down the route to a cure or treatment, sadly. 4.5% hardly sounds like a significant proportion.


I was one of those who have had many potential "trigger" events along the way i.e. shingles (herpes zoster virus), giardiasis, as well as several years of being severely crashed after the annual flu jab recommended for me as a Type 1 diabetic. The truth is out there. Somewhere. Medical science will one day hold the answers.


A little crashed at the mo after cutting a couple of twigs in the garden. The bushes have infinitely more energy than my immuno-compromised little body. Even with all my stubborn fightback impulses that refuse to be infinitely kept under by this darned disease!


Tomorrow is diabetic clinic. The moment of truth when I discover if I'm going to be taken to task for discontinuing my statins. Will my cholesterol be raised beyond reason without them? One diabetes specialist nurse and even the last diabetes consultant I saw 6 months ago suggested I try to come off them to see whether my M.E. muscle/nerve agonies and weakness improved without the statins notorious influence. Let's see which way the old swings and roundabouts go this time. Watch this shaky space!

XMRV video on YouTube

You ban us from giving blood in the UK.
Yet you still mutter it's all in our heads?

*facepalms (very) gently*

Worth a watch if you want to understand why.