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

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!