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

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!