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

Countdown to the big "L" - Invest in M.E. with me to celebrate!

L = 50 in roman numerals.


Today's my last day of being in my "life begins at 40"s.

Looking forward to enjoying some of my favourite "L" things:

Love!

Laughter!

Luvverly people!

Loopiness!

Lingering autumnal smells!

Lustrous autumn colours!

Life-enhancing memories! 

Lockhouses, lighthouses and lots more family history!

Looking through binoculars at my beloved wild birds!

Re-Laxing! (Well, that one was close! Cut me some s-Lack!)

Listening to TMBG, REM, Sparks & other of my favourite music! (John Linnell counts towards the "L" pleasures, too)!

Learning how SWFC have done in the footie! (Maybe not!)

Lying down to recover from frantically enjoying all the above!

Lots of other stuff that doesn't begin with an "L" but I love it anyway!

In spite of M.E. trying its hardest to chip away the will to live for the last couple of decades, it still hasn't managed that, and never will!


Here's to tomorrow! (No big parties or outings this year - just a couple of understanding, loving friends around for a while and then to my Mum's for the weekend & some more fellowshipping - and fellow-ess-shipping!). Here's to the next half century!

Thanks a million to everybody who has already sent me love for my birthday tomorrow, and a special hug to all who have already donated to my charity choice,  Invest in M.E.


If you'd like to celebrate my big half century birthday with me by donating towards the future of all M.E. patients, to fund research, real effective treatments and the hope of a cure, please visit my page:


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


Even if you can't donate, please just take a look and maybe encourage others to learn a little more about M.E. Together we can bust those myths, push forward the boundaries, lay the trail into a brighter future for everybody!


Love and blessings XXXXX

Hope is the Thing with Feathers

 News is breaking here from Dr Jamie Deckoff-Jones MD, that the Nevada based WPI (Whittemore Peterson Institute) research program has been closed by the institute's CEO, and the facility is now locked down. It's former principle investigator, Dr. Judy Mikovits, is in discussions concerning other institutions to which she may move to continue her grant-funded research.

The whole worldwide community of M.E. patients and carers is at a loss what to think. Where does this leave us? What should we believe? Where should we put our efforts now?


Much of hope, spoons and support has been invested by so many.

Emily Dickinson's poem springs to mind:

Hope

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

Hope feels fragile at trying times. It can get very buffeted about when devastating, disorientating news like this breaks on which much is pinned. But the wordless tune has to carry us through towards a future where the truth will certainly finally be known.

As with other diseases, MS, AIDS/HIV, TB, the path to understanding and treatment doesn't always go smoothly or quickly. But I'm hanging in there with gratitude for all who have done their bit towards pushing forward that cutting edge of research and advocacy. You are all heroes and flame-fanners to me!

In a week when I am asking friends, relations and well-wishers to donate to Invest in ME for my 50th birthday here: Joyce's 50th birthday gift for M.E. (already over half way to target, and only a couple of unhelpful psych nay-sayers coming out the woodwork so far!) Invest in M.E has made clear it is independent of the meltdown that seems to be engulfing its US counterpart. Its statement is here and makes its own position clear. I also hope all research may quickly get back on course following whatever derails it. Lives depend on it.

Please let's never give up hope. Let's gently pull together and keep each other hoping and laughing through the gloom and disappointments. We'll always have each other and good people with integrity fighting on our side. I truly believe tomorrow is in safe hands, in spite of every setback.


No word yet on the main Whittemore Peterson Institute website.

No word yet where Dr Judy Mikovits will be continuing her funded research into the retroviruses that are so heavily implicated in the etiology of M.E.

No word at all in the media, as of 3pm, Monday October 3rd 2011 in the UK.

Nothing but disconsolate tweets on Twitter and the social media.

But that "thing with feathers" will one day have a joyful tweet to twitter about the truth, causes and cure of these diseases that are our constant companions today.
Hanging onto that hope with both hands through this "chillest land" and "strangest sea" till tomorrow dawns!

...............................................................................................
First official news I have seen at 8.30 pm UK time: not adding much to what was understood earlier in the day:
Wall Street Journal Health Blog 3rd October 2011

Finally, at 10pm UK time, a statement from the WPI itself.

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

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