Tachycardia getting even tackier!

Well, after Saturday evening's loss of two hours of my life to extreme hypoglycemia, it's put me back quite a bit and been all but housebound since. 


The temperature here in Yorkshire is hitting the mid seventies, so it would be great to get outdoors more to take advantage. Managed one wobbly stagger down the garden to see the golden leaves from the Ash and Cherry trees banking up on the lawn. So beautiful. The birds are going barmy for the balmy, enjoying this warm snap, chasing each other in the sunshine.  A few weeks ago, my Mum heard a lady proclaim that "You don't know what to wear! We shan't have any more weather!" Premature, it turns out!

This week, my occasional tachycardia has become a much more frequent companion. Like other visitors, it really should have warned me it intended to call! I'd have changed the locks, had I known! So much so, accompanied by dizzy spells and greater than usual difficulty making sense of ordinary stuff and concentrating, I've actually promised to go have myself checked out by my GP.


"Well," said one well-meaning well wisher, "it may be a recognised M.E. symptom, but they can give you things for it these days. You haven't told them, recently."

I know. I never go to the GP now, unless forced to, any more than I did before I was ill with M.E. I have to be seen regularly about my diabetes in any case. Forgive me if I'm less than hopeful of getting help with the tachycardia. Any more than the GP has been able to relieve my pain. Or disperse my grinding, draining exhaustion. Or keep my stomach and intestines from having a life of their own. TMI. Or do anything but pack me off to the M.E. (for that, read CBT/GET) clinic in Sheffield soon after I was first diagnosed by the immunology department at Sheffield Hallamshire Hospital. Then no more. No further intervention. Except to write 'M.E.' on my records clearly, a few years on.

But I care about the people who care about me, so I will make that appointment.


Even less welcome is the annual flu jab at my local surgery this Saturday. Every year now I have to debate, all alone, the pros and cons of having it. So many years it has lead to me being profoundly ill afterwards. It is still one of the most likely looking candidates, unofficially, for contributing to my complete collapse into M.E. in October 2005.


Shall I? The diabetic advice says "Yes".

Shan't I? The rather shaky M.E. wisdom says "No".

A friend whose husband is terminally ill with emphysema, on oxygen, will not have the flu jab these days, though all the advice from medics tells him to do so. My friend says, though I haven't the facts or figures personally to back this up, that GPs get £40 per every flu jab administered.

Anecdotal evidence names a GP who actually stopped one of his patients in the street as he drove away from an appointment where he had given another patient her flu jab at home. He urged the pedestrian patient to get into his car, and gave her the flu jab there and then. £40 is tempting, whatever the dare, true, kiss or promise of it.

Every time I approach the subject of how ill the flu jab has often left me within days, the old line about "it's a dead virus, it can't give you flu." is trotted out. Apart from one wise nurse, who could only say that it was up to me.

It can't give us flu. No. I know that, thank you for asking! I'm not saying it gives me flu! I'm suggesting that something seems to be happening with my immune system that reacts to whatever is in the shots. Perhaps that's why it does vary year to year. I don't know. I'm not the expert. Seemingly, nobody else is either. Again, from a very low ebb to start with, I must decide whether to take the plunge and line up for the injection.


Then I'll make my appointment for the tachycardia. I fully expect the tests, if done, will make me look like a malingering idiot as usual. Or perhaps, even at rest, relaxed at home, the fluttering, nauseous, dizzying sensation is "all in my head"?


Sarcasm over. It's a beautiful day outside of these four walls!

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!

Trying to wear that upside down frown

I can hardly move today. Crashed horizontal till evening by something that feels like burning, sickening poison seeping through my arteries, making my muscles jerk, my blood slam in my temples, my throat and chest exhausted at every breath or murmur.


Three things today focus in the back of my addled brain:


1) Summer's over. September 22nd means its autumn. My favourite season is here.

2) R.E.M. have split, or rather retired, and I feel too fragile today to listen to any of their luminously complex back catalogue. Their music has got me through some difficult M.E. days of drought. Not today. Just touches too many deep places today.

3) News is breaking that XMRV has just been shown to be unrelated to M.E. Probably. I can't process all the facts and figures today. But that little light in the dark tunnel of M.E. research seems to be being snuffed out as I type.

Good or bad? Hope it's not a chance for the media to take us backwards away from awareness. Or is this a stirring up of already muddy waters, freeing the field for more quality bio-medical research that will help sufferers everywhere to get well again?

Tomorrow, three certainties:

It will be autumn.

I want to listen to treasures from R.E.M.'s back catalogue if I can bear any sound at all.

I will still be hoping for some relief amid this horrendous disease which is about to prevent me typing or staying upright a moment longer today. As of now.

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.

Every picture hides a story

Got energy in spades...but what about an hour or two later?

I posted this photo as a joke on Twitter and Facebook today. I'd simply taken it to show my Mum the new dirt-cheap shovel I'd just had delivered from Amazon.

When she comes to help me with little garden tasks like cleaning up under the wild bird feeders, gathering leaves, a spot of snow clearing from the path to the door, a shovel is something my household toolkit has lacked for many years.

I've a dustpan. Too flimsy and small. 

I've a spade, too heavy and flat.

So, I decided to buy this cheap shovel to make life easier. Not for me, usually, but certainly for those generous, kind and fit enough to lend a hand when they can. I need a small step ladder for the same reason. Not because I could climb it, as I am at the moment. But folks who come to help with little household jobs from time to time aren't all as tall as I am!


The joke was that I was imagining this image of me brandishing the shovel is what an intruder might reasonably be expected to be confronted with in the middle of the night, with this lethal looking weapon on site!


My natural affability tells everyone who knows me this would be the furthest thing from the truth. I captioned the photo:

"They'd be shaking in their shoes. Not!"


But the punchline, from an M.E. point of view, is even further from the obvious message this image conveys on the surface.


The shovel isn't very heavy. But within an hour or two, after just lifting for this shot, my wrists and chest are on fire, the following day, from the effort of posing for it. That's the part nobody sees when we're gripped by myalgic encephalomyelitis.


We all tend to wear our outside face for the world. For me, that's the genuinely jokey, positive, laugh-a-minute, glass-half-full face. That's one reason even friends sometimes forget what that positive energy expenditure actually costs me. That's what you never see; what you don't see happens once the shutter has clicked closed and the camera is laid aside because your wrists are too weak to lift a fork or your balance too shaky to stand or sit without nausea.


Every picture tells a story.

Every picture hides a story too.

Like the iceberg we say we've "seen" when we only glimpse the tip above the frozen ocean.

The camera doesn't lie; but it can't always show the whole truth.

It's a snapshot in time; but M.E. is a fluctuating illness, within a year, a month, an hour, moment to moment.


I still want to make you smile, like I always did when I was well enough to bounce.

But please be careful you don't judge the book by its cover, when a friend with M.E. puts their best foot forward for you. Or I might need that shovel after all! Now that IS a joke, honest! :D

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

 

State Funding Promise for M.E. Research - Pinch Me, Am I Dreaming?

Professor Stephen Holgate who has been instrumental in moving the MRC towards backing funding for biomedical research into M.E. The Independent calls him "a government advisor, but not afraid to speak his mind"

Backing for M.E. Research reported today

Pinch me, am I dreaming?


That's the response of so many of us in the M.E. patient community to today's amazing news via PublicService.co.uk


So many false dawns. So much disappointment and abandonment in the past. Over the summer, in the media, so many groundless attacks on those with M.E.


Today, this wonderful news.


Alongside other patient-backed independent charity initiatives like Invest in ME this news that the Medical Research Council is looking into the possibility of funding and support for a blood bank and bio-medical research is truly the most wonderful thing I've read in all the time I've been ill.


I can't add much more today. The link above speaks for itself.


I'm just so thankful. A new hero to me, reading this, is Professor Stephen Holgate. This is why:


"The first attack on their approach came in the Chief Medical Officer's report of 2002 and we asked for a new strategy. Nothing much happened until Professor Stephen Holgate set up an MRC expert group which produced a list of biomedical research priorities and now we have funding to take this forward." 

Bless Professor Holgate! Somebody influential with the Government and Medical Research Council who actually understands M.E. 
Doing exactly what we all trust medical professionals to do. Listening. Opening his mind. Learning from others. Wanting things to be better for patients. Making things happen if they are not happening already. Being compassionate. Being proactive on his patients' behalf.

If I had the strength, I would be partying tonight! 

Stephen Holgate Professor of Immunopharmacology at the University of Southampton

More about Professor Stephen Holgate on University of Southampton website 

Prof Holgate named among Britain's Top Air Pollution & Green  Scientists in The Independent 

Giardiasis link to ME/CFS? My Bolivian souvenir

Giardia Lamblia - the little protozoa who took up residence in my gut c1991

 In 1991 I relocated to Bolivia, South America. I lived and worked there for the next two years without returning to the UK until my first furlough in late 1992, after which I did not go back.


During my time there, I contracted giardiasis, and was treated in the Methodist Hospital in La Paz. American missionary doctors prescribed the standard drug to treat Giardia Lamblia, Metronidazole. 

After the short, sharp earlier stage of this intestinal disease, I found it all but impossible to return to normal functioning. I lost weight. I lost energy. I became weak. I lost my appetite. My limbs and muscles became sore and painful. I had severe headaches. I had trouble sleeping. I had a constant feeling of deep, draining fatigue. The sensation I call "walking uphill through treacle". My ears sang. My eyes found it hard to bear the light.

 This went on and on. I stayed for a prolonged period recuperating with another missionary couple in La Paz, in a spare room, away from the bustle of city life. I did not improve much, or quickly.

 In time, faced with an ultimatum from the church headquarters back home that unless I could return to my post in Sucre, a plane ride away, they would have no alternative for the sake of my own health (considering my diabetes, too, as I was unable to eat healthily by this point) but to bring me back to England, I made the excruciating journey back to Sucre.

Sucre, "La Ciudad Blanca", "The White City", where I was director of the Internado Metodista

I was little better there. Fortunately (or not!), several of the students in the Internado Metodista where I was director for the church, were studying medicine or nursing at the University of Chuquisaca in the city. There were no shortage of girls willing to try out their medical skills on this captive, weakened gringo!

I have photos of me lying in my bed at the Internado, wired up to a saline drip which was taped precariously to the wall while the med student inmates tried to help me recover and keep me hydrated. I felt like I was running a temperature much of the time, even though the climate in Sucre is pleasantly temperate, free from the extremes of La Paz and at a lower altitude.

La Paz, highest capital in the world, on the Andean Altiplano overlooked by Mount Illimani

 I did complete my time there, but my health has never fully returned. All the symptoms from that time, from the IBS-like swings into diarrhoea and constipation, to the worst ravages of profound disabling fatigue, muscle and nerve pain, cognitive dysfunction, sleep disruption, new sensitivities to pollen, alcohol and strawberries etc have dogged me on and off, by boom and bust ever since.

I don't recall the giardia protozoa having such a friendly face!

 I recovered for periods enough to count myself well, and I rejoice to remember those times when I was strong enough to travel around talking about my time in Bolivia, to train as a minister in the Methodist Church and work with churches in Southampton and latterly, Rotherham.


But things were never quite right. Three bouts of shingles in my head that left me unable to work for weeks that ran into months. Then the gradual worsening of symptoms each autumn when, on diabetic advice, I would obediently undergo the annual flu jab, meant to save me from rogue virus attack! Every time worse. Then that final collapse after the flu jab in 2005 that brought me to where I am now. Always the mystifying panoply of disabling symptoms that nobody could explain or alleviate.

I had read before in articles discussing M.E./CFS that giardia is one of the conditions implicated as a trigger.


Here today, we have this thorough study from Norway, that shows nearly half of Giardia patients report IBS and chronic fatigue symptoms three years later. Some even after 8 years.

Giardia - not my favourite parasite. Could it have triggered my M.E.?

I had to have a stool sample analysed on my return from South America in the early 90s to establish that the giardia lamblia was not nesting smugly in some coil of my ravaged colon, and I was eventually given the all clear. I was glad to hear those voracious troublesome little protozoa had taken leave of my gut.


I wonder if one day, I'll find the bunting and party-poppers actually came out too soon on that score?

Giardia - the guilty party?

 But if giardia is to blame, then I have hope that further studies may unlock a cure for me, and set me free at last.
  
Norwegian Study into Giardiasis link to IBS & Chronic Fatigue

Something for the Weekend! (But Monday's a non-starter!)

 On Sunday I was planned to lead worship at a church where the congregation understands more than most about M.E.


Not only have they lost a full-time minister in their circuit to the disease, i.e. me, but one of their own beloved local worship leaders in the congregation also has M.E.


She and I discussed how we were both doing at the moment, comparing the muscle pain that makes even wearing a bra uncomfortable when the chest, diaphragm and stomach feel swollen with poison.

 We talked as only those who really undestand can, about those IBS-like symptoms and those days when even though you can get up, appetite is nil. Contemplating the complex processes of fancying food, preparing it, cooking it and having the strength left to lift fork to lips to eat it, is just one step too far!

 Overdoing things, plus passing viruses always end up flooring us both, in spite of our positive attitudes. People know us both too well in our church communities to imagine it's all in our minds, thank goodness! (Though we've both had more than enough of that attitude from elsewhere including medics!)


It was a "relatively" better day for us both. Relatively better, of course, or I couldn't have been there to take the service, nor she to be in the congregration! I was leading my one brief hour of worship per month at her church. I still can't manage any more. 

 Being there for Sunday meant I couldn't be at the circuit preachers' meeting for fellowship the following day. I can't do things day after day, still, or my body can't recoup what it loses with each effort. Since then I've been virtually housebound and sleeping for England, trying to recover. My throat's now sore and glands swollen with that brief hour of projecting, laughing, sharing, chatting, concentrating. My muscles are spasming now at the slightest move and I feel like I've just swum a polluted Thames with David Walliams this weekend! (I wish! Well done, that man!)

 My aim is now to gradually recover enough to manage something similar (preach not swim, silly!) at another church some time next month, and if all goes to plan, the month after too. We talked about how this itself was a fantastic thing to be thankful for, compared to early days when I could hardly stand and speak at the same time at all, let alone every so often on a good day. 


She had had a particularly bad time the previous week and still looked as washed out and doddery as me! (We are both in our middle years, rather than the pensioners our bodies take us for!).

When I talked to friends in the congregation that I hadn't seen for over a year, how I'm planning to raise funds for Invest in ME for my 50th birthday next month, a few asked if I had thought of talking to the Circuit Admin Assistant about it? Why not publicise this more widely, considering how many people know me from my ministry in the area in past years?


I hadn't actually thouught of that. I always feel very reluctant to push any cause related to myself, but it all fell into place as a possibility when several folks enthusiastically went on to remind about the Circuit newsletter which has regular circulation round all the different Methodist Churches in our area and has a readership beyond the pews.

 So that's next. When strength returns a bit! I'll contact the editors soon so it can be mentioned (warmly!) there, with links to the charity and to my fundraising page

Joyce's 50th Birthday Gift 4 M.E.


I really think this will help many people who know people with M.E. like myself and the worship leader, to have a chance to do something positive.


In spite of being completely wiped out by going to church this weekend, even with a door to door lift and wonderful support all the way, it was a true blessing as always. I usually don't even have the health to walk to my own local church round the corner! Many were touched and reached by my message, they said, and being in the right place at the right time, for me, the congregation's suggestions might just have unseen ripples into the future for everyone with this devastating disease.

Carpe Diem for M.E. Research with INVEST in ME

Seize the Day!

 Wonderful news yesterday that the WPI (Whittemore Peterson Institute for Neuro-Immune Disease) in Nevada USA has won $100,000 regional prize with Vivint! Yay! Well done, everybody involved! Lots of little votes paved the way to a chunk of vital funding!


It shows that where fundraising is concerned for M.E. and underfunded research, there is a real urgency to "Carpe diem!" - Seize the day!

In the UK, we can seize our day by clicking the link above and getting ourselves along to nominate INVEST in ME for its chance to be in the top ten nominees for the September Cause of the Month with Easy Fundraising UK.

If you're having a bad day, if you're just too brain-foggy today and can't concentrate to write much, you can just copy and paste info across into the form at the foot of the nominations and comments page, telling why INVEST in ME should win the funding. (See below)

We have until Monday September 17th to nominate. The resulting top 10 charities will be announced on Sep 17th and then people have till midday on September 30th to vote.


Every little effort helps!
The winner will get a donation of £200 from Viking
That could be £200 more towards bio-medical research into M.E.!


Here below's an explanation from info given on Invest in ME's wonderful website that you could cut and paste to explain why you are nominating them: copy and paste into the form on the link below and the Diem is truly Carpe-d!

I would like to nominate INVEST in ME.

They are an independent UK charity campaigning for bio-medical research into Myalgic Encephalomyelitis (M.E.), as defined by WHO-ICD-10-G93.3.
They have links nationwide and also internationally. Invest in ME are one of the founding members of The European M.E. Alliance.

Their aim is to bring together like-minded individuals and groups to campaign for research and funding to establish an understanding of the Aetiology (causes), Pathogenesis (harmful effects) and Epidemiology (the pattern of distribution of a disease through a population) of M.E. This should lead to the development of a universal "thumb-print" test for diagnosis of M.E. and, subsequently, medical treatments to cure or alleviate the effects of the illness.

Invest in ME want to establish a national strategy of biomedical research into M.E.

Please join us and help make M.E. an illness which is properly understood and where adequate funding is provided for biomedical research into ME allowing treatments and cures  to be found.

EasyFundraising.org.uk Cause of the Month September 2011

What are we waiting for? 

We can do it for M.E. together!

Then you owe yourself a quiet time with a cup of something warm and comforting in this autumn air, listening to something soothing! 

Take care of yourself XXX

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