Robert Saunders

Rob's 40th Birthday and after

Fundraising for ME Research UK
£15,193
raised of £15,000 target
by 112 supporters
Celebrating the birthday of Rob, 3 May 2013
Participants: Rob
ME Research UK

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We fund vital innovative biomedical studies to ignite research into ME/CFS

Story

Birthday message 2024:

Once again, I’m raising money for ME Research UK for my birthday on 3 May. If you would like to make a donation, you can do so here or at www.justgiving.com/Rob40

Thankfully, my health is a bit better than it was this time last year, but the reality is that I’ve still not been well enough to go out in my powered wheelchair since Dad’s funeral in October, I haven’t managed to read a book for over a year, and I am still in constant – often excruciating – discomfort.

As most of you know, I was once an academic scholar and keen sportsman who loved going out and hated being alone. That I am still that person is both a blessing and a bane. My illness has only ever heightened my motivation, but it has robbed me from being who I am for more than 3 decades. This year I will be 51, but most of my knowledge of who I am is taken from before I was unwell, when I was still a teenager, from the vicarious life I live through other people’s experiences, and through my imagination of what I might be doing if my health permitted.

Since Dad died, the uncertainty about my future has been thrown into sharper focus. Mum is now my sole carer and I don’t know what I will do when she can no longer look after me. I have no consultant, there are no appropriate services for people with my diagnosis, and there are no effective treatments.

Last year I spoke to one of Mum and Dad’s friends who had been confined to a wheelchair for many years with a rare heart condition. A couple of years ago a surgeon who told her that with advances in science and technology it would be possible to operate on her. After surgery and a few months of rehabilitation she is now as fit and healthy as any of her friends of her age – with an added appreciation of everything she is now able to do.

That could still be me; I can still be who I am beneath this illness. But it is unlikely to happen without a huge increase in investment in ME research, which continues to receive far less funding than any other illness of similar disease burden. That is why I am once again asking for donations to ME Research UK for my birthday.

Sincere thanks to everyone who has donated and supported me in different ways over the years. Without you I would have nothing.

Wishing you all a Happy Polish Constitution Day.

Rob

50th birthday message 2023:

On 3 May I will turn 50 and once again I am asking for donations to ME Research UK for my birthday. 

Since I became unwell in 1992 my life has not been without moments to cherish or small achievements, but it has been a constant struggle. I haven’t done most of the things I wanted to do before I was 21, let alone 50, but in some ways that wouldn’t matter if I could regain my health. One of the frustrations for me, which paradoxically also keeps me going, is that life could still be so good – not only if I was completely fit and healthy again, but even if I was just well enough to be able to do a few more of the things that I used to take for granted, like being able to go outside every day, or just to be in less pain and discomfort. I try to remain positive but it is getting harder, and without hope that my health could improve I don’t know that I would be able to go on. Although the epidemiological data is not a cause for optimism, I have always been confident that whatever is wrong with me, and others, could be reversed if the pathophysiology was understood. However, the only way that is likely to happen is through a significant increase in high-quality biomedical ME/CFS research, funding for which has been woefully inadequate for all of the time that I’ve been unwell – far less than for other illnesses of similar disease burden. Birthdays have been difficult since I’ve been unwell, but raising money for ME research, along with the love and support of family and friends, makes a huge difference.If you would like to make a donation for my birthday, you can do so at www.justgiving.com/Rob40Sincere thanks to everybody who has donated and supported me over the years. Rob NB I have increased my target to £15,000 after we reached my initial target of £10,000 (set before my 40th birthday) a couple of years ago. Since then we have also raised £2,667 for Invest in ME Research (www.justgiving.com/RobIiME) 

Birthday message 2022:

Once again I’m asking for donations to ME Research UK for my birthday on 3 May via Facebook and www.justgiving.com/fundraising/rob40

After my discharge from hospital in 2019, I was hopeful that if my inflammation markers (CRP) returned to normal I might notice some improvement in my long-term symptoms, but sadly that hasn’t been the case. Instead I’ve been quite a bit worse than I was before they started going up, and for the past year or so I have been significantly worse again. 

Still nobody knows why my CRP levels went through the roof. We all suspect it may have something to do with my ME but as nobody understands the pathology of ME that doesn’t really help. Meanwhile, despite some positive developments, ME research continues to receive far less funding than any other illnesses of similar disease burden. 

After nearly 30 years of illness, without hope of improvement the future is too bleak to contemplate. As I wrote last year, just to be well enough to go for a wheelchair walk every day, let alone return to anything like a normal life again, would make a huge difference. That is why I am determined to try to raise as much money as I can for research.  

One recent study funded by ME Research UK, which gives me hope, found that endothelial cells (those which line blood vessels) exposed to blood plasma from people with ME seem to behave differently from cells exposed to plasma from healthy people. It’s only a very small study which needs to be replicated, but it makes a lot of sense to me and it may also be relevant to some people suffering from Long Covid: https://www.meresearch.org.uk/decreased-no-production/

I was also pleased to read that ME Research UK is funding a PhD student to work with the DecodeME team at Edinburgh University who are analysing the genetics of ME to try to understand its causes and mechanisms: https://www.meresearch.org.uk/newly-funded-phd-genetics-research/

Sincere thanks to everyone who has supported me over the years and helped to fund this and other important work. It really makes a huge difference.

Rob 

Birthday message 2021:

Once again I am asking for donations to ME Research UK for my birthday via Facebook and Justgiving.

I know it’s been a tough year for many people, but most of the hardships I have endured have had little to do with the pandemic. I have become accustomed to not being able to get outside for 6 months over the winter, but I promise it doesn’t get any easier with experience. And this year has not only been harder because we haven’t been able to have visitors, but also because the lockdowns and other restrictions have held a mirror up to my experience. As pleased as I am that the dangers of Covid-19 appear to be receding in the UK, and as happy as I am for others, I cannot deny that it can also be hard to witness other people’s joy at the start of a journey towards normality when life continues to be so restricted for me because of my health. 

The other day I read a blog which raised the question of whether it is possible to be happy when one is living with ME. I have often wondered if I might have been able to come to terms with my limited physical and mental capacity if I could feel reasonably well by staying within my limits. I’m sure I would still have been exceedingly frustrated at times but I could imagine that I might have been able to find a level of contentment that I might have described as happiness, at least for long enough to write that I was happy. The difficulty for me, and one I have wrestled with almost constantly since I became unwell in 1992, is that I never feel well or comfortable enough to feel content. I find satisfaction in achieving things, like writing, helping others in small ways, and spending time with those I love, but such pleasures do not obscure the constancy of my physical discomfort. They help to sustain me, and give me a reason to go on, but without some hope of improvement, however faint or diminishing it may be, I don’t know that I would still be here. That is why I, like so many people with ME, use so much of my limited capacity to campaign for more and better research. It continues to be a tortuous journey, and I often feel that I have reached my limit of endurance, but somehow I trudge on.One of my small achievements has been raising money for ME research. Since 2013, when I first started asking for donations instead of presents for birthdays and Christmases, we have raised over £9,200 for ME Research UK. I’m really hoping that we might be able to reach my target of £10,000 this year. Thank you for your support. Rob

Christmas 2020 Message: 

Once again I’m asking for donations to ME Research UK instead of Christmas presents this year.Thanks to huge investment in research it looks increasingly likely that effective vaccines will enable the much of the world to start returning to something like normal again some time next year. Unfortunately, life is likely to continue much as ever for me and other people with ME/CFS unless somebody manages to figures out what is wrong with us and how to put it right. Although I was delighted that DecodeME (a genome wide association study which hopes to identify the causes of ME/CFS) received £3.2 funding this year, the sad truth is that ME/CFS is one of the last illnesses to be studied in this way, and ME/CFS continues to receive far less funding for research, relative to disease burden, than all other illnesses. I know lockdown has been tough for everybody, and I do not underestimate the hardships that many people are having to endure but, for me, just to be well enough to go for a wheelchair walk every day would be a huge relief. I know that I manage to put on a positive front most of the time but things have been almost unbearably difficult for many years now. All that keeps me going is hope and love – and it is has been hard to retain hope when so little has been done to try to find answers for so long.  More positively, we have now reached 89% of the £10,000 target I set on my 40th birthday. Before the pandemic I was planning to organise a big event (which I was not expecting to be well enough to attend) to raise the last couple of thousand pounds needed to reach my target. I’m still hoping I may be able to organise a fundraising event in 2021 or 2022. In the meantime, all donations of any size will be very gratefully received. 

Merry Christmas to you all, Rob   

NB All royalties I receive from the sale of my book are also donated to ME Research UK: www.strangerandstranger.net 

2020 Message: 

Once again I am asking for donations to ME Research UK instead of presents for my birthday on 3 May.As many of you know, before the lockdown I hadn’t been well enough to get out of the house since September. These days I am usually able to get outside in my wheelchair a few days a month when it’s a bit warmer, but for about 10 years I didn’t even manage to get into the garden. While the confinement has been difficult, the symptoms of the illness have been harder to endure, affecting both my physical and cognitive capacity. Just to feel comfortable would be a blessed relief. I do not underestimate the threat of Covid-19, or the hardships that many people are facing, but I hope that one of the positives that may come from this experience will be a greater empathy for people who are housebound and isolated because of chronic illnesses like ME, and a greater appreciation of the need for investment in research. The Covid-19 pandemic will hopefully end with the development of a vaccine before too long, but my lockdown is likely to continue unless effective treatments are developed for ME. Studies show that ME receives far less money for research than other illnesses of similar disease burden. That is why I have invested so much of my limited capacity in campaigning, and why I am so desperate to raise money for ME Research UK. 

Thanks to everybody who has supported me. 

Rob

2014 Message:

Following the success of my sponsored 40th birthday, I have decided to keep this page open indefinitely so that people can make donations to ME research UK for all my future birthdays and Christmases.

I’m not asking never to be given any presents ever again. If there is something particular that you would like to give me, it will always be gratefully received. But if you’re just thinking that you want/ought to give me something – anything – but are not quite sure what, then please make a donation.

Without wishing to sound curmudgeonly, I have often struggled with the waste and materialism of Christmas and birthdays. When so many are in such need, it seems perverse to spend so much on our insatiable wants.

With my needs having been so stark for so long, while biomedical ME research has been so badly neglected, that perception has grown ever stronger. There is little I would not forgo just to know what is wrong with me, let alone to feel well and live a normal, healthy life again.

Understanding and effective treatments for people diagnosed with ME will only come about through biomedical research. Unfortunately, money for such research is still woefully inadequate – far less than for other diseases of similar impact.

The money raised for my 40th birthday (£1386 + Gift Aid ) gave me a much needed lift. I have now set an ambitious target of £10,000, with no time limit. To reach or even surpass such a total would be a great achievement.

In addition to your donations I will also be adding money that I raise by selling my photos and cards (www.photosforMEresearch.co.uk), and any other money-making schemes I conceive. 

Thank you for your support. 

Rob

To help reach the £10,000 target I am now including money raised by Mum and Dad through various fundraising activities such as the Probus walk and lunch they hosted, and organising the refreshments and raffle at the village craft fair.

My 40th Birthday message (2013):

In an attempt to take something positive from turning forty I’ve decided to use the occasion to try to raise some money for ME Research UK.

As well as seeking donations from anyone who would like to support the cause, I am also asking those who might otherwise have given me a present to make a donation instead. Cards, letters and messages will all be very welcome but no presents this year please.

Birthdays have not been the easiest time for me since I’ve been unwell, and significant birthdays are harder than those in between.

My eighteenth was great. Mum and Dad laid on a lavish dinner party for about twenty of my friends, after which we all descended into the basement to carry on partying for most of the night. It was a fun time in my life and an evening that I will never forget, not least because it was the last party I had.

Subsequent birthdays have been less cheerful, although I am grateful to have such happy memories from my college days. Others, like Emily Collingridge, have been less fortunate. She suffered an excruciating and prolonged death in hospital last year at the age of 30 after battling against severe ME since the age of six. (If you have not read her story, I would urge you to do so on the ME Association website: www.meassociation.org.uk/?p=10880)

For the twenty years that I have been unwell, government funding of biomedical ME research through the Medical Research Council has been non-existent at worst and inadequate at best*. There is no diagnostic test and there are no effective treatments. Consequently, supporting charities such as ME Research UK is vitally important.

For all the pain, misery and loss, I know that I am lucky to have the support of family and friends, which many with my diagnosis do not. I know that many of you have given generously in the past but if I could persuade you to make a donation to ME Research UK for my fortieth birthday it will surely help to make it a happier occasion.

Thank you for your support. I look forward to inviting you to my next party.

Rob

 *According to data available from the ME Research UK website (http://www.meresearch.org.uk/mrcaward.html), annual government funding of biomedical ME research through the MRC from 2003-2008 averaged less than £0.06 million. Prior to 2003 it was virtually nil (Hansard, HL Deb, 5 November 2002, c95W). The MRC’s gross research expenditure for 2009/10 was £758.2 million. 

NB You can now donate to this page by texting BDAY73 £1 [your amount] to 70070.

About the charity

ME Research UK

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ME Research UK exists solely to fund high quality biomedical studies into the causes and treatment of ME/CFS. This illness affects approximately 250,000 people in the UK but is neither well understood nor, in many cases, properly recognised. We fund highly regarded, peer-reviewed research worldwide.

Donation summary

Total raised
£15,192.97
+ £762.75 Gift Aid
Online donations
£12,227.07
Offline donations
£2,965.90

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