As many of you know, ME has destroyed my youngest Son’s life and had a devastating impact on my family.
Alex is bed-bound for the vast majority of the day and is housebound the remainder of the time. He has lost the majority of his friends and feels isolated from the world. He faces a bleak and uncertain future.
My wife gave up a job she loved to care for Alex full time and this has had its own impact on her, with no time for Kathryn to live the life she should have.
Matthew, my eldest son, has also had to deal with the effect that ME has had on our family. This has not been easy for him at all, and is something that no teenager should have to deal with.
You can probably imagine the impact this has had on the family that I love, and how it makes me feel.
A father (and husband) is supposed to protect his family.
ME affects more people in the UK than Multiple Sclerosis but it is little heard of, misunderstood by the medical profession in general and there is no funded research into this chronic condition.
For my birthday this year, I’m asking for donations to INVEST in ME RESEARCH. I’ve chosen this non-profit for very obvious reasons, and I hope that you’ll consider contributing as a way of celebrating with me. Every little bit will help me reach my goal. I’ve included information about INVEST in ME RESEARCH below.
Invest in ME Research is an independent UK charity facilitating/funding a strategy of biomedical research into Myalgic Encephalomyelitis (ME or ME/CFS) and promoting better education about ME. The charity is run by volunteers – patients or parents of children with ME. No paid staff & all work is performed for free.
We are a small charity but with a growing number of supporters with big hearts and determination to get the best possible research carried out to find the cause of ME and develop treatments. investinme.org
For this “Movember” for men’s health we have a matching donations period of up to £500! Plus I’ve included a couple of links to some interesting recent research projects which suggest gender differences in ME/CFS.
For those of you who haven’t heard of “Nomenbar for ME” it is LDIFME’s take on “Movember” awareness raising month for men’s health.
It’s true, in common with many other autoimmune diseases, that ME is more common among women than men with an approximate ratio of 4:1. However men of all ages, races and types still suffer from it.
Do men and women suffer from different phenotypes of the disease? Researchers at the Vall d’Hebron University Hospital in Barcelona recently tried to find out by comparing the characteristics of 1309 consecutive ME/CFS patients (Fukuda-defined). Of the 1309 patients, 119 (9.1%) were men and 1190 (90.9%) were women. The researchers found a number of significant differences between the sexes in a variety of clinical and demographic factors such as but not limited to; age of diagnosis, symptoms and coexisting conditions. It’s still impossible to say from just one such simple study whether this suggests specific phenotypes but, as the authors say, as ME is best seen as a neuro-inflammatory process and there are neuro-immune differences between the sexes it’s quite possible. Read more.
There has also been interesting findings regarding energy metabolism. It’s been proven that all ME sufferers suffer from problems with their Cytric acid cycle; basically the body’s ability to gain energy from carbohydrates. Instead it makes energy from different, lower yielding sources of energy. However it seems there’s a sex difference here too; Øystein Fluge of Haukeland University Hospital in Bergen, Norway, and his colleagues studied amino acids in 200 people with CFS, and 102 people without it. The levels of some amino acids in the blood of women with CFS was abnormally low – specifically for the types of amino acid that can be used by the body as an alternative fuel source.These shortfalls were not seen in men with CFS, but that could be because men tend to extract amino acids for energy from their muscles, instead of their blood. And the team saw higher levels of an amino acid that’s a sign of such a process.” It seems that both male and female CFS patients may have the same obstruction in carbohydrate metabolism to energy, but they may try to compensate differently,” says Fluge. Both sexes had high levels of several enzymes known to suppress pyruvate dehydrogenase (PDH), an enzyme vital for moving carbohydrates and sugars into a cell’s mitochondria – a key step for fully exploiting sugar for energy. Read more.
As usual we are inviting “guest blogs” this month from men with ME telling their story. Email us at fundraising4ME@gmail.com or contact us via Facebook or Twitter if you want to participate
Visit this year’s JustGiving page solely dedicated to Movember. Remember there is a £500 matching donations period so help us reach our target to raise more for IiMER! Donations can also be made offline but please state when donating offline if it’s specifically for Movember for men’s health www.justgiving.com/fundraising/nomenbar4me
My name is James Wythe, I’m 27 and currently living in the Bournemouth area, I have developed a passion for healthy living and cooking after falling very ill 6 years ago. My new blog focuses on gluten, wheat, dairy, egg and sugar free foods. Most of my time is spent either in the kitchen creating quick and healthy allergy free meals or thinking about new dishes I can make. Here is a link to my blog. www.healthylivingjames.co.uk
It all started when I fell ill in December 2010 just after completing my sports science BSc Degree at Bournemouth University (where I was playing golf for the University and also the Dorset County 1st team). I thought my illness was just a touch of food poisoning but for some reason I didn’t recover and the symptoms just seemed to get worse and worse. I tried to push through this but reached a point where I had to be rushed into hospital for suspected brain tumour. I had several brain scans but I was so weak at that point having lost nearly 3 stone in weight that I couldn’t eat, drink or even stand up!
On my third trip to hospital I was kept in for 11 days. I was tested for everything they could think of, however all the tests came back “normal”. At that point I had also become hypersensitive to more and more of the medication they were giving me. I also had a severe allergic reaction and developed a sensitivity to light, smells and certain foods. The doctors were unable to give any diagnosis apart from saying that I had some kind of viral infection, so they just sent me home and told me to rest and take it easy for a while.
I did go home and rest, unfortunately I didn’t recover or feel any better, in fact I just got worse. I was bed bound, unable to stand up or walk by myself. I couldn’t watch TV or look at my phone as I was extremely sensitive to the light which would give me awful headaches but to make matters worse, I suffered with severe insomnia often going days without any sleep at all. This made it impossible to see my friends and made me feel really isolated.
After multiple attempts to get help from the doctors they finally, after nearly 6 months, diagnosed me with M.E. (Myalgic Encephalomyelitis) also known as CFS (Chronic Fatigue Syndrome). I was told there was no “cure” and all I could do was rest and wait.
I started to follow some Facebook pages about M.E to gain more knowledge and came across a page called Let’s Do It For M.E (LDIFME) who were raising money for UK charity Invest in ME to do extensive research into the illness particularly into the gut. Over the next few months I contacted all friends and family members and managed to raise £3000 (The charity raised funds to match the donation making a total of £6000) towards the research which really helped them hit the £100,000 goal they had set. If you wish to donate to this charity or find out more about M.E then go to ldifme.org/foundation-research-project/
Hi everyone! Seems it’s that time of the year again already, the nights are beginning to draw in and it’s time to don our fluffiness mittens and cosiest pyjamas as we approach Winter. But under the cover of darkness, Invest in ME Research loyal supporters and volunteers are still beavering away…
Donations are still coming in to our Give It Uptober fundraising page and Sophie Tennent is being sponsored to give up Facebook for November. Many thanks to all supporting – justgiving.com/fundraising/GIUtober
Zoe Johnson’s school held a non-uniform day raising an impressive £895.78 and bringing the total raised by Zoe over this year for Invest in ME Research to a whopping £2965.78! Read Essentially Zoe. Support Zoe’s fundraising at justgiving.com/fundraising/Zoe-C-Johnson
Karen Morris and Stu Nimmo are featured in Salford Star magazine.
Read about our Salford Stars here.
Amazing Makayla Nunn and Tommy’s 4ft Horse Jump for Invest in ME Research is also in the news. Read all about it here. Support Makayla and Tommy at justgiving.com/fundraising/Makayla-Nunn2
Tina Rodwell is the mother of a brave boy aged 11. The Rodwells are fundraising for Invest in ME Research because “They are determined to find an answer”. Read Tina’s story and support The Rodwells at justgiving.com/Tilly-Moments
John Adam is running The Brighton 10k on 20th November for Invest in ME Research. Read his story and support him at justgiving.com/John-Adam4
Victoria McNiff is organising The Mighty Deerstalker for Invest in ME Research, because 14 year-old Kirsten has severe ME. The event takes place on 11th March 2017. It is “probably the hardest off-road-Tweed-clad-pipe-lit-plus-four-and-headtorch-wearing run that exists, and the biggest nightrun in the U.K.” Victoria wrote, “The more the merrier” if any one else wants to do it for the charity. Read her story and support the event at justgiving.com/fundraising/InvestinMEforKirsten
Sally Hogarth is doing The Guys 10 Mile Road Race for Invest in ME Research in December because, “One of my best friends, Hayley, was diagnosed with Myalgic encephalomyelitis (M.E) a few years ago and I have witnessed how it has rapidly changed her quality of life. Even though she is suffering deeply with this disease, she is still one of the strongest and loveliest people I know.” Read Sally’s story and support her at justgiving.com/fundraising/Sally-Hogarth
Stacy Hart’s Runnin On Empty free and fun competition closes midnight Wednesday 9th November. Find it on Facebook here.
Last year we launched our take on Movember Awareness of men’s health ‘No-Men-Bar for Myalgic Encephalomyelitis’ as there’s a much higher ratio of women to men with ME, in common with other autoimmune diseases. Please contact us if you’d like us to feature your story this month. You can find a range of stories at the end of the 2015 intro blog for Nomenbar for M.E. Geoff Allen has severe ME and a very generous friend of his is offering matching donations up to a maximum of £1500 (excluding Gift Aid, that is an extra bonus, so please remember to check the Gift Aid box if you pay UK tax). The page to use to double the value of your donations is Matching Movember – justgiving.com/fundraising/Geoff-MMO
“I helped my 10 year old son to the bathroom as the crippling pain rippled through his leaded body. His lips were dry and cracked even though he had drank an ocean of water that day. His complexion had that grey alabaster look, with those deep panda markings that have become my nemesis.
As I helped him back to his room, he explains how embarrassed he feels about it all and I gently chastise him that things could be a lot worse. I quickly think of some comic element to lighten the load, and tell him of anecdotes of times I have helped his big brother and sister out. We have to take every movement real slow as he is dizzy and feeling sick. He sits at the end of the bed while I arrange the special pillow so that his head is elevated, and his sore neck is supported. I put eardrops in, to sooth his sore ears and Olbas Oil to clear his congested sinuses. There is nothing I have found that will help with his sore throat.
He would normally ask me to leave, but he is too weak and in too much pain to do so. I lay next to my son until the temperature in his legs has warmed. His body rigid with pain, I try not to think of the future because no one can say what will happen to my 10 year old son. There has been very little research done on the pathway of this disease, even though 25,000 children suffer in this way every day in England.
He has not been to school for months and he is desperately missing every aspect of life. He is jailed in our home by a dysfunctional body, crippled by M.E. Disbelieved by most medical staff not taught how to treat this long standing illness and portrayed as malingerer by politicians, with the threat of the Education Services and Social Services never very far away from my thoughts. This worry stagnates my concerns into despair. As a mother you are blamed from every angle, even by your own self. I haven’t slept properly for a couple of years now, and everyone keeps telling me to look after myself, but how do you do that, when you don’t feel safe and uncertain about the future? Which part of my life is on solid ground?
I try not to think back to the life we had, the fun of movement the joy of being a family so rudely taken from us. Just to jump in the car and go visit, have friends and family around, have a life. I have to pull from the here and now to gain the strength to make a buoyant life. There are many people out there with all sorts of illnesses and disabilities. I turn on the shower and cry it out.
I dress before he wakes and organise a day where he does not have to think. I worry about which foods his tummy will accept. I don’t put on the perfume I love to wear or deodorant because this will set off the migraine like headache, which will add to his already painful head. I cut out the Christmas decorations in the hope he will feel well enough to help. If not, I will quietly get on with it while we watch a film. I will pick a film we have seen a thousand times before, because this is all he will be able to do today. Watching a well viewed film is classed as an activity, unbelievable isn’t it?
He wants to go shopping and we have a month before Christmas. He wants to buy me two presents at the shops. Apparently I’m worth two! We have looked on line but he is determined to go out and he has even relented to using a wheelchair. We don’t have a blue badge to make our lives easier which is a shame, but we will manage. In my mind I think of taking him to eat somewhere special, of the music they put on for Christmas, the decorations, the lights, and life. For just a little while we could live. The payback of Post Exertional Malaise will be worth it? Wish us luck x”
