Hurst Family Fundraising for ME!

Jane Hurst

I have suffered with this horrible illness – ME – for over 16 years. I also have Dysautonomia, and was recently diagnosed with Elhers Danlos Syndrome. I have too many symptoms to list, most of them invisible, but the symptoms that cause me most distress are the severe chronic pain and the disabling and very uncomfortable circulatory/cardio vascular problems. I spent the first 2-3 years of the illness completely bed-ridden & all of the past 16 years housebound (mostly bed-ridden) but due to the pain I experience now I am unable to lie down and sitting down is too painful a lot of the time, so life is extremely difficult, having to stand hunched over my bed for hours each day even though this causes me to feel very faint & exhausted. I try to be positive but if I’m honest most days are nothing short of an endurance. This is also the case for many of my fellow Severe ME/EDS sufferers.

2013 Picture Quiz

Back in 2000 I felt I just had to do something to help raise both awareness of this illness and funds for ME research. I decided I would organise a trivia quiz. It took months to compile but eventually it was complete and, thankfully, it raised over £400 for ME Research. I went on to do another 7 more quizzes and 2 years ago Geoff came on board and our 2 quizzes have raised a total of £2100 for Invest In ME. Lets Do It For ME helped us to reach this total as did our families, and of course our friends who were so generous with donations. We hope to organise another quiz later this year. Geoff’s a great quiz partner (don’t tell him I said that though!)

Profits to Invest in ME and The 25% M.E. Group

Back in 2004 I put together some Nature photocards to raise money for various ME Charities. All photos I use for the the cards are taken by either people with ME or the families of PWME. We got 20 packs of each design printed up and thankfully they sold! And incredibly they still do sell! Profits from the photocards go to Invest In ME and The 25% M.E. Group. Alongside the photocards I’ve been making my own greeting cards since 2005. Due to the illness I can usually manage two 20 minute card-making sessions a day and even during these better hours it’s often frustratingly difficult to concentrate due to the pain and vertigo I experience, this is one of the reasons I keep my designs pretty simple, plus I’m not talented enough to create anything too complex! 

Range of Designs

Supermarket Display

My family have been brilliant and organise sales three times a year at our local supermarkets and our local Farm Shop sell my Easter and Christmas cards. We all just want to do our bit to help raise awareness and funds for this horrible horrible illness that unfortunately can and does destroy lives. Over the past 13 years the cards and the quizzes have raised over £11,000 (£2000 of this was raised by the online quizzes Geoff Allen and I organised). Hopefully the cards will continue selling and hopefully Geoff and I can think of some more quiz questions so we can launch a 2014 Trivia/Picture Quiz later this year! Thanks for reading :-) Jane Hurst.

Hurst Family Sales of Jane's Cards

A big THANK YOU to Jane Hurst and family for their tremendous efforts and achievements in raising awareness and vital funds for biomedical research into myalgic encephalomyelitis, and not forgetting quiz-partner and fellow Let's do it for ME Team member Geoff Allen. Together, they embody the true spirit of our can-do community campaign 

in support of the progressive work of 

Invest in ME Research charity in developing a UK centre of excellence for ME.  

Jane has two sets of photocards now with new designs. Click below for details.

Pack 1         Pack 2 

Cards for all seasons to Invest in ME all year round!

SUMMER PICTURE QUIZ - THE WINNERS ARE ANNOUNCED!

From Jane Hurst and Geoff Allen ..

We’re delighted to finally be able to announce the winners of this years Summer Picture Quiz: In joint first place is Sarah Hill and Helen Cramp who shared the first and second prize of £70. Not far behind them were Charlene Clarke and Karen Ellis who came joint 3rd and both won organic chocolatesWELL DONE EVERYONE! Or I should say Well Done Girls, as there was only one male in the top 10! Very very poor chaps! Must do better next year .

Being serious, thanks to everyone who took part in the quiz and also a big Thank You to everyone who made such generous donations. We’re so grateful. The total amount raised for Invest In ME’s Research fund is £830!! And incredibly this has been matched by a hugely generous friend, and donated to Invest In ME’s Rituximab Research appeal. So in total £1660 has been raised for IiME . Thanks to everyone who helped promote the quiz, it’s really appreciated.

For an Answer Sheet, just email Summer-Picture-Quiz@sky.com. Oh and if anyone would still like to make a donation our Justgiving page http://www.justgiving.com/IiME-Summer-Picture-Quiz-2013 will be open for another 2 months. Thanks again and Congratulations to all the winners!

Best Wishes

Jane and Geoff

The team would like to add BIG THANKS also to Jane and Geoff for all the hard work they put in to making such a success of the second year of the Let's do it for ME summer quiz.  The original matching offer by their friend was £750 so it is extra generous of them to match the full £830 raised.  Many thanks and very well done to all involved!! 
Let's do it for ME!

SUMMER PICTURE QUIZ - WIN £50!

Summer Picture Quiz – Win £50!

Raising money for Invest In ME’s Biomedical Research Fund

PLUS all funds up to £750 will be MATCHED & donated to

Invest In ME’s Rituximab Research Fund!

Take Part on Facebook - Only £2 to enter
You don't have to enter the quiz to help reach the matched donation amount by donating £2
Closing Date - 25th October 2013

Hello! Can you name the very famous man below? If so, then you’re one point closer to winning £50! It's taken us a fair few months to compile (health reasons), but we promise this years quiz is more fun and yes it’s not as difficult as last years’!

It’s all about pictures: pictures you must identify, and sometimes answer questions on, from categories that include TV, Nature, Music & Puzzles. It’s only £2 to enter and first prize is a whopping £50! 2nd prize is £20 and luxury organic chocolate is 3rd prize.

All prize money has been donated, so EVERY penny you give will go to Invest In ME's Biomedical Fund. Also, once again, a very generous friend has agreed to match all money raised (up to £750) & donate it to The Invest In ME's Rituximab Research Fund. Please see our Just Giving Page for further details. So, every pound you give will be worth DOUBLE FOR CHARITY.

To enter, it’s simple, first you pay for your quiz entry by either using TextGiving - simply text SPQZ88 followed by the amount: £2 (+ a donation if you choose) to 70070 or JustGiving: CLICK HERE Then send your name (as it appears on your Facebook account) and the word “Paid” in an email to: Summer-Picture-Quiz@sky.com. We’ll email you an answer-sheet and you are then free to add yourself to the Summer Picture Quiz Facebook page.  

You can return to the quiz page as often as you like before completing your answer sheet. Closing date is: 25th October 2013. Finally, if you can share this message, that would be fantastic.

Thank you  and GOOD LUCK!
Jane Hurst and Geoff Allen

2012 Summer Trivia Quiz - Winners Announced!

    

Raising money for Invest In ME and The Pain Relief Foundation.

Thanks to everyone who bought a Trivia Quiz this year and also a huge thank you to everyone who made such generous donations. We’re so grateful. We were really impressed with the high standard of the quiz entries. It was very close, but we do have a winner of the 1st prize of £40, Chris Simmons from Norwich, who scored an incredible 99/100! 2nd Prize of £15 goes to Helen Catling from Peterborough and the posh organic choc for coming in 3rd goes to Owen James from Hunstanton. Well Done!!

The total amount raised for Invest In ME is £1,203 and amazingly this was matched (£1000 by one friend and £203 by two others) and donated to The Pain Relief Foundation. The prizes had also been donated so that all the funds raised went to the causes. Thank you SO much for your amazing generosity.


Finally thanks to Jo Best & Paul Kayes for spreading the word so effectively, and to Rowan , Charlene and Mum for being top quiz sellers! and everyone else who helped us especially Paul and all the Hursts and Allens :-)

For an answer sheet just email calamity-jane@sky.com. Oh and if anyone has outstanding quiz-sale funds or would still like to make a donation our Justgiving page: http://www.justgiving.com/Summer-Trivia-Quiz-2012 will be open for another 3 months (these donations will not be matched though). Thanks again :-)

Love,

Jane and Geoff
PS. We promise next years Quiz will be easier! Honest!

 

Jane Hurst                                    Geoff Allen

      









   



                       

Both Geoff and I have suffered with Severe ME for over 14 years - Prior to ME we both enjoyed full, active lives. We worked, we travelled, played sport, had social lives, and, well, put simply, we had our freedom and our health. Sadly ME has taken all this away, as it has for so many of our friends.  Pain and distressing neurological symptoms dominate each day, in fact most days can feel like nothing short of an endurance test.  This quiz had been organised to help raise money for Invest In ME, a charity that campaigns for vital biomedical research into ME, with the hope that one day a cure will be found for this blimmin horrid illness.  Incredibly, all money raised by this quiz was matched by a hugely generous friends and donated to The Pain Relief Foundation (Charity No. 277732).  This is a charity which funds research into the causes and treatment of chronic pain.  Millions of people in the UK alone, including many with ME/Fibromyalgia, experience severe chronic pain.  It goes without saying that it’s hugely distressing to live with on a daily basis, especially when  pain drugs aren’t tolerated which is often the case for ME sufferers, therefore research into the causes and treatment of chronic pain is vitally important.

Here is some more general info on ME: 

ME is recognised by the World Health Organisation as a serious neurological illness. It affects around 240,000 people in the UK alone. It is a potentially severe, disabling and chronic condition affecting the immune and central nervous system, and varies greatly in its severity and duration. Some people do recover or at least make a partial recovery, but for many, symptoms remain for decades. These symptoms include incapacitating exhaustion after even the slightest activity, together with malaise, nausea, joint and muscle pain, and disturbances of major body systems eg.respiratory, auto-immune and cardio-vascular. Severe chronic pain and major digestive problems are also common. Very severely affected sufferers can experience paralysis, severe light & noise intolerances & some even require tube or intra venous feeding.

ME Awareness Month - no wait - come back!

The following is from a letter written by Geoff Allen, edited and contributed to by Jane Hurst and emailed to their friends during May Awareness Month, with kind permission to repost.

Hello dear friend,

As you may or may not be aware, May is ME awareness month. In the main I think only ME people seem to be aware of ME awareness month, therefore I thought I'd spread the word a little (if that's ok). Normally I let this event pass without really marking it apart from posting a few things on my Facebook page but this is different for a number of reasons. Firstly a fab article appeared in the Daily Mail on 11th May and I just had to share it with you. There have been many damaging and misleading articles written by lazy and ill-informed journalists over the years, and as you can imagine, these have been hugely distressing to read. And very difficult to counter, too, of course. But Sonia Poulton's article in the Mail is a revelation. I've been waiting for an article like this to appear for the last 10 years! It's brilliant. She understands the numerous problems people with ME encounter, not just with the illness, but also with the way so many ME sufferers are mistreated by the medical profession, and how the illness is badly misunderstood by the general public. So, it's great to see an article that attempts to set the record straight and explodes most of the myths and misperceptions about ME. I know you're all enormously busy and have full and hectic lives, but if you could find the time to read it, I would be so grateful. It would mean a lot to me if you did. I'm sure most of you already have a good understanding of the majority of the problems already but it would still be great if you could read it and perhaps pass the link on to friends and associates. And, should anyone ever question the fact that ME is a physical condition, perhaps you could show them this article. I'll even print out some copies for you if you like! 

One of the other great things about this article is that it mentions a film called 'Voices from the Shadows' which was made by an ME friend's family and features little old me. Well, old me anyway. Har Ha. I'm only in a couple of shots but I absolutely steal the film with my boyish good looks and charismatic screen presence. It also features my good friend Naomi who has been mistreated terribly by the medical profession since she became ill aged 12 (she's 35 now). I've not seen the film (can't watch DVDs unfortunately) but I'm assured it's very good and demonstrates the mistreatment and downright abuse some sufferers have been subjected to. It won an audience favourite award when screened at the recent Mill Valley Film Festival in America too. The film was made principally to send to medical professionals and journalists to try and counter the misinformation (and damn right lies) about ME that remain in the public domain. And in the case of Sonia Poulton (my heroine!) it has achieved its aim. She didn't believe ME existed and seeing the film has changed her opinion. Brilliant. The film recently came out on DVD and I have bought several copies in the hope that lots of people will watch it. It's quite a tough sell tho esp when I know I'm preaching to the converted in all your cases. But I still would be so grateful if you could watch it as it is such a powerful piece of work, not only is it very informative, but most importantly it highlights the reality of this wretched illness. It's only an hour long but obviously I'd be so chuffed if you could find the time to watch it and then help spread awareness of the terrible plight of ME sufferers - especially the long term severely affected like myself and Naomi (& my many other severely affected ME friends. And there in lies the problem. The prognosis for the severely affected is not good. Most ME sufferers improve a bit over time but, despite what most people think, ME is incurable. If you hear of people in the press making a miraculous recovery, especially using one of these controversial psychological techniques, the chances are they didn't have proper neurological ME to begin with. As it stands at the moment ME's a life sentence. This will not change unless research is carried out. That's the huge problem we face. (Btw there are so many other problems with ME too but I won't go on about them now!). As I said, the main problem is a chronic lack of research funds, coupled with the fact that the medical community isn't very interested in tackling ME unfortunately. The illness is just too complicated and the situation will never really improve until there's a massive injection of money into research which we hope will then lead to a major research breakthrough - like a diagnostic test for example. That would make a huge difference.

Shockingly, there's still no dedicated research centre for ME either (unlike all the other major illnesses). It's completely unacceptable. How can things ever change for us when so little research is being carried out? As a result, there's still no bespoke treatment for ME. It's the illness with the largest number of sufferers not to have a dedicated bespoke drug. There are drugs available to try, but they are all for illness management rather than treating the root cause of the disease. Also a lot of the drugs that may help aren't licensed for treating ME so it's almost impossible to get them prescribed. Its a nightmare! We need more trials but there's just precious little research going on at the moment. And also the severely affected ME sufferer, like myself and many of my friends, are almost never included in the trials so that's a problem too especially as we're the ones who need the most help. It's all rather tough to take especially when you've been ill for so long and are dealing with frightening and often very painful symptoms day after day, and the situation just isn't changing for the better. However, I hope this article by Sonia together with the Voices film will prove to be a watershed for people with ME. That's my sincere hope anyway and that's one of the reasons I'm sending this email to you. This film is so important and we just need as many people as possible to see it. Awareness can bring about change. It could also mean we get our lives back. It gives us hope at least, which is SO important when living with a chronic illness. (I said I wouldn't go on about it but I did. Sorry. It's so difficult to hold back sometimes! I'm sure you understand).

Geoff Allen

Thanks so much for reading this. I really appreciate it. I'm sure you've got enough problems of your own without me banging on about ME. Promise I won't mention it again. Well not a few weeks anyway. Ha. Hope you're all ok and life is treating you well.

Much love to you and all your family, pets etc. And thanks again for reading. Speak soon.

Lots of love
Geoffrey

Jane Hurst