Russell Fleming, Content Manager, ME Association.
ME Awareness Week will take place from Monday 11th to Sunday 17th May and we would really appreciate hearing about your life with M.E.
Getting your stories out there is one of the best ways to raise awareness about M.E. and improve understanding. We would very much welcome your stories and photos around our two central themes for ME Awareness in May:
- The Lost Years:
The things you have missed out on and the things you have had to adapt to because of M.E. - A Focus on Symptoms:
The M.E. symptoms you particularly struggle with and/or the ones you have found ways to manage together with any tips or advice you’d like to pass on to others.
To the many who have sent in their stories already, we are very grateful for your support and will be featuring them online in May, with our main focus still on ME Awareness Week.
For members of the ME Association, a bumper edition of ME Essential magazine should be received during the first week of April. It features some of our themed stories, together with samples of the posters and graphic designs we will be making available to everyone in May.
We will be continuing with our very popular fundraising theme – Go Blue 4 ME – although fundraising events are now of course restricted and will be held online where possible. For details and support, please contact our fundraising manager, Tony Britton (Phone: 07946 760811).
Coronavirus stories
ME Awareness in May will obviously be affected by the coronavirus and the Government restrictions like social distancing and self-isolation.
Community events are cancelled but we can still try to make our voices heard during this special time of ME Awareness particularly as more people are now at home and online using social media.
With the news media now so focused on coronavirus and likely to be for some time to come, we think that we stand a better chance of getting your stories and our message onto their platforms and reaching even more people, if they contain something about the virus and how it is affecting your ability to continue with normal life.
We are therefore extending the Symptoms theme to include stories from people with M.E. affected by the coronavirus itself and/or the Government restrictions:
- Have you experienced the coronavirus infection? How were you able to manage?
- How have the restrictions affected your ability to manage M.E.?
- Have the restrictions affected your M.E. symptoms?
- What tips or advice do you have for others affected by M.E. in these difficult times?
- What are your main concerns as a disabled person?
- Are you able to source groceries and medications?
- Has it affected your reliance on carers?
- How have you had to adapt daily life to adopt the restrictions now in place?
- Is life today any different to the life you lead normally as someone with M.E.?
Extended deadline
We are extending the deadline for all stories relating to our central themes for ME Awareness in May: The Lost Years, Symptoms, The Coronavirus.
If you do have a story you would like to share, then please send it to us via email (Feedback@meassociation.org.uk) no later than Friday, 10th April.
This will give us time to ensure your story is shown on our website and social media and we will do our best to get it in the news media as well.
- We will also feature a selection of stories in the Summer issue of ME Essential magazine which is published in July. If you want a little more time to write your story, then please send to: cavey@meassociation.org.uk no later than Friday 22nd May.
Your stories should be between 500-1500 words and we will need some personal photographs. We require some personal background, where you live in the country, how long you have had M.E. and the main content should be in keeping with one of our themes (above).
Thank you.
The ME Association
Please support our vital work
We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.
If you would like to support our efforts and ensure we are able to inform, support, advocate and invest in biomedical research, then please donate today.
Just click the image opposite or visit our JustGiving page for one-off donations or to establish a regular payment. You can even establish your own fundraising event.
Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive ME Essential – quite simply the best M.E. magazine!
ME Association Registered Charity Number 801279
While writing this I am again thinking “why me?”.I don’t know when am I going to stop thinking about this question,may be never.All started 8 years back after I had my son born.I don’t know what happened exactly that changed my body systems upside down or other way round that none works normally.How badly it has affected my life .The saddest thing is there is no treatment for this condition and this makes me cry almost everyday.We human beings are so advanced in other technical fields.We are preparation to go to other planets, we have so many other developments that make us think that we human beings are the most intelligent beings in this world and we know everything.But sadly people like me think we humans are nothing and we have achieved nothing in the field of medical science.I suffer everyday every moment but there is no medical treatment found for this condition,and there will be various many conditions for which we don’t know the treatment.So , I don’t know when we human being will be able to find cure for conditions like CFS/ME.Will the scientists find the cure when I won’t be in this world…looks like that!Forget about the cure the health professional around us won’t say anything about the condition.They won’t even tell you clearly what is the name of the condition and what all options are available for us.We will be seeing hundreds of people but won’t get a helpful reply from anyone.In Uk we see GP first,it’s sad to say the GPs don’t know anything about CFS then how will they plan care for us.When a GP ,being a doctor doesn’t know how to handle patients like us then hoe do we expect any understanding about CFS from our family members.I have been suffering from this everyday problem everyday but I don’t know what to do to remove all the pains ,aches and tiredness.The only person who knows what’s happening is only us and our own family members won’t understand what is it and why I am behaving in certain way.What they see is why she is not behaving normal,why she is grumpy,rude,angry all the time.How will a normal person without CFS feel our pain in the body, the aching pain is always there,24hrs,even while sleeping,even after getting up ,all day .How is it possible to be happy if we have pain and aches and tiredness all the time.For me all kind of developments and latest technologies are worthless.What is the use of these developments if people like us are suffering each moment and they are around people who doesn’t understand what is and how we are suffering each moment and we will be dying feeling the same till our last stage and still our own family won’t be able to feel what we went through.
The only request I have with doctors and scientist are that please some of you research about CFS and find the cure please please please.Otherwise we will leave this world leaving behind people thinking how bad persons we were who were only angry and frustrated all our life.Please,government let your GPs know about the management of CFS through a proper channels,rather then GPs seeing us like a depressed middle aged women who don’t have anything in her life and comes every other day for something.At least inform them that there is this condition called CFS and let them explain to the patients as well as their family about what all happens in this condition because people think we are lazy and doing drama for attention.What will be drama from a CFS patient who themselves are constantly going through the pain,ache,tiredness,unwell ness and fade up up the reactions of people around them and their expectations.
But still thinking “why me”,what did I do that I have to suffer all my life,was it my fault or my body’s fault or weakness that it couldn’t handle the stress in that post natal period,why couldn’t I handle stress thinking that it’s temporary and good time would come and had patience but rather it reacted so badly and left me in this worse condition for ever.Or was it my family who should have more thought full and would have protected me from this life long painful condition.Doesnt matter whose fault was that but the fact is I am the one who is suffering every moment with pain and weakness and my family who gave me this condition don’t want to understand what CFS is and they don’t remember about my illness unless I show them myself in bed with pain and crying.The days I don’t cry that means I am fine and I should be doing all the work like a normal person.Why it’s so difficult for people around me to understand that the pain is always there ,I cry when it’s untolerable and I get sad and depressed thinking about it.If I get up and behave normal doesn’t mean that I am alright,it means I am trying to live without complaining about my condition but I expect from from people mainly my family that please remember about my condition and don’t expect me to behave absolutely normal person,though I don’t express it.